Science News | Autism Speaks https://www.autismspeaks.org/science/science-news en Tune in: July 26 meeting of the Interagency Autism Coordinating Committee https://www.autismspeaks.org/science/science-news/tune-july-26-meeting-interagency-autism-coordinating-committee <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> A regularly updated listing of meetings, webchats, webinars and podcasts of interest to the autism community </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Autism Speaks Chief Science Officer Tom Frazier will update IACC on scientific programs and strategic planning</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="500" height="281" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/iacc_thumb_500.jpg?1500475932" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/iacc_hero_1_0.jpg?1500475871" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">July 17, 2017</span> </div> </div> </div> <h3 style="color:blue;"> You&#39;re invited: July 26 meeting of the Interagency Autism Coordinating Committee (IACC)</h3> <p><em><strong>Agenda will include update on Autism Speaks science program and strategic planning</strong></em></p> <h3 class="rtecenter"> &nbsp;</h3> <p><strong><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/iacc_room_shot_685.jpg" style="margin-right: auto; margin-left: auto; max-width: 100%; display: block;" /></strong></p> <p>The federal Interagency Autism Coordinating Committee (IACC) will hold its next quarterly meeting on <strong>July 26</strong>, at the National Institutes of Health in Bethesda, Maryland, and via live webcast. The full-day meeting is open to the public and includes a public comment period.</p> <p>Autism Speaks Chief Science Officer Thomas Frazier will update attendees on the organization&#39;s science program and its current strategic planning process, which includes solicitation of feedback from the broader autism community.</p> <p>Autism Speaks encourages members of the autism community to participate in the meeting and make their views known. <strong>Learn more and register to provide public comment </strong><a href="https://iacc.hhs.gov/meetings/iacc-meetings/"><strong>here</strong></a><strong>.</strong></p> <p>The IACC is charged with overseeing and coordinating autism-related research and services across federal agencies and departments within the National Institutes of Health.&nbsp;</p> <p class="rtecenter"><strong>View archived IACC webcasts&nbsp;<a href="https://iacc.hhs.gov/meetings/multimedia/">here.</a></strong></p> <p class="rtecenter"><strong>Look for information on upcoming IACC meetings&nbsp;<a href="https://iacc.hhs.gov/meetings/">here</a>.</strong></p> <h3 class="rtecenter" style="color: red;"> <strong>****</strong></h3> <p class="rtecenter"><span style="font-size:20px;"><strong><img alt="" border="0" src="http://www.autism-insar.org/resource/resmgr/images/Summer_Institute/17SummerInstitute_BannerEnew.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></strong></span></p> <p>The International Society for Autism Research is hosting a free series of six online seminars related to culture and diversity in autism research.</p> <p> The seminars will run Thursdays from July 13th to August 24th (<em>excluding July 20th</em>), covering topics such as autism in low-resource settings, adaptation of assessments or intervention for diverse communities, and biomarker findings across the autism spectrum in diverse samples.</p> <p> The presentations are designed for students, post-doctoral fellows, other early-career investigators, stakeholders, and families interested in autism research.</p> <p>&nbsp;</p> <p class="rtecenter">&nbsp;<em><strong><a href="https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.autism-insar.org%2Flink.asp%3Fe%3Djessica.sachs%40autismspeaks.org%26job%3D2994682%26ymlink%3D137652843%26finalurl%3Dhttps%253A%252F%252Fautisminsar%252Esite%252Dym%252Ecom%252Fevents%252FEventDetails%252Easpx%253Fid%253D980716&amp;data=02%7C01%7Cjessica.sachs%40autismspeaks.org%7C1ef669cb60584fc11e6a08d4c4b55814%7C5e19f50f01744cac878b851ca149b7cd%7C0%7C0%7C636349730533557095&amp;sdata=oPbSMmLoLft7MsvCXUf%2FbwqeiQvaweMDjXIGMn2McRQ%3D&amp;reserved=0" target="_blank">Registration is free and available worldwide</a></strong></em>. &nbsp;</p> <p><strong>Session 1: </strong><em>Access to Services Across Diverse Communities: Service Expansion to Rural and Underserved Areas</em><br /> <strong>Presenter:</strong> Aubyn Stahmer&nbsp;<br /> <strong>Date:</strong> 13 July 2017<br /> <strong>Time:</strong>&nbsp;1:00 pm EDT</p> <p> <strong>Session 2:</strong> &nbsp;<em>Ethics and Participation in Autism Research</em><br /> <strong>Presenter: </strong>Elizabeth Pellicano<br /> <strong>Date:</strong> 27 July 2017<br /> <strong>Time: </strong>10:00 am EDT</p> <p> <strong>Session&nbsp;3:</strong> <em>Cross Cultural Views of ASD - An Anthropological Perspective</em><br /> <strong>Presenter:</strong> &nbsp;Roy Richard Grinker&nbsp;<br /> <strong>Date:</strong> 3 August 2017<br /> <strong>Time: </strong>TBD</p> <p> <strong>Session 4</strong>: <em>Autism and Bilingualism: What Do We Know? What Do We Need to Know?</em><br /> <strong>Presenter:</strong> Sue Fletcher-Watson<br /> <strong>Date: </strong>10 August 2017<br /> <strong><strong>Time: </strong></strong>10:00 am EDT</p> <p> <strong>Session 5:&nbsp;</strong><em>Structural Inequalities in ASD Diagnosis and Services at the Intersection of Race, Class, and Gender</em><br /> <strong>Presenter:</strong> Jennifer Singh<br /> <strong>Date:</strong> 17 August 2017 &nbsp;<br /> <strong>Time:</strong>&nbsp;1:00 pm EDT</p> <p> <strong>Session 6:</strong>&nbsp;<em>A&nbsp;presentation on topics related to autism research in India, particularly epidemiological aspects and the development of screening and diagnostic tools. Title: TBD</em><br /> <strong>Presenter: </strong>Nidhi Singhal&nbsp;<br /> <strong>Date: </strong>24 August 2017<br /> <strong>Time: </strong>12:00 pm EDT</p> <div> &nbsp;</div> <h3 class="rtecenter"> ... Archived webcasts ...</h3> <h3 style="color: blue;"> Thanks to those who joined the July 18 &quot;Autism and Health&quot; Facebook LIVE chat with Autism Speaks Chief Science Officer Thomas Frazier. If you missed it, here&#39;s the archived webcast:</h3> <p>&nbsp;</p> <p>&nbsp;</p> <div class="media_embed" height="350px" width="560px"> <iframe allowfullscreen="true" allowtransparency="true" frameborder="0" height="350px" scrolling="no" src="https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2Fautismspeaks%2Fvideos%2F10155513990597497%2F&amp;show_text=0&amp;width=560" style="border:none;overflow:hidden" width="560px"></iframe></div> <p>&nbsp;</p> <h3 class="rtecenter" style="color:blue;"> <strong>***</strong></h3> <p>&nbsp;</p> <div class="media_embed" height="315px" width="560px"> <iframe allowfullscreen="true" allowtransparency="true" frameborder="0" height="315px" scrolling="no" src="https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2Fautismspeaks%2Fvideos%2F10155350525557497%2F&amp;show_text=0&amp;width=560" style="border:none;overflow:hidden" width="560px"></iframe></div> <p>&nbsp;</p> <p> <strong>On June 2nd, </strong>Autism Speaks Chief Science Officer Thomas Frazier answered questions about autism research during a Facebook LIVE Chat with the Autism Speaks community. View the archived webcast above. &nbsp;</p> <h2 class="rtecenter" style="color: blue;"> <strong>***</strong></h2> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/may_2017_epi-webinar_.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p><strong>Learn how research on epigenetically regulated genes provides insights into autism&rsquo;s gene/environment interactions.</strong></p> <h2 class="rtecenter" style="color: blue;"> <strong>* * *&nbsp;</strong></h2> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/zylka_epi_webinar_hero.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" />On March 13, Mark Zylka, of the University of North Carolina Neuroscience Center, described his research using genetic analysis to gain insights into environmental risk factors for autism, with a panel discussion and comment period led by Valerie Hu, of George Washington University, with time allotted for audience questions. It was moderated by Autism Speaks Interim Chief Science Officer Mathew Pletcher and Autism Science Foundation Chief Science Officer Alycia Halladay, as part of an ongoing webinar series supported by the Escher Fund for Autism, Autism Speaks and the Autism Science Foundation.&nbsp;</p> <h3 class="rtecenter" style="color:blue;"> View the archived webinar below.</h3> <p>&nbsp;</p> <p>&nbsp;</p> <div class="media_embed" height="360px" width="640px"> <iframe allowfullscreen="" frameborder="0" height="360px" mozallowfullscreen="" src="https://player.vimeo.com/video/208658025" webkitallowfullscreen="" width="640px"></iframe> <p height="360px" width="640px"><a href="https://vimeo.com/208658025">2017-03-13 Exploiting genetics</a> from <a href="https://vimeo.com/autismspeaks">Autism Speaks</a> on <a href="https://vimeo.com">Vimeo</a>.</p> </div> <p>&nbsp;</p> <p>&nbsp;</p> <p>***</p> <p><strong>On Feb. 22nd, </strong>Donna Murray, Autism Speaks vice president for clinical programs and head of our Autism Treatment Network, hosted a Facebook Live chat, answering questions related to:</p> <p class="rtecenter"><a href="https://www.facebook.com/autismspeaks/videos/10155038232502497/"><strong>Improving healthcare for people on the autism spectrum</strong></a>.</p> <p>You can view the archived webchat below or by clicking&nbsp;<a href="https://www.facebook.com/autismspeaks/videos/10155038232502497/">here</a>. Check out the comment section for related resources and links.</p> <h2 class="rtecenter" style="color: blue;"> <strong>* * *&nbsp;</strong></h2> <p>&nbsp;</p> <div class="media_embed" height="315px" width="560px"> <iframe allowfullscreen="true" allowtransparency="true" frameborder="0" height="315px" scrolling="no" src="https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2Fautismspeaks%2Fvideos%2F10155038232502497%2F&amp;show_text=0&amp;width=560" style="border:none;overflow:hidden" width="560px"></iframe></div> <p>&nbsp;</p> <h2 class="rtecenter" style="color: blue;"> <strong>* * *&nbsp;</strong></h2> <p> <iframe allowfullscreen="true" allowtransparency="true" frameborder="0" height="315" scrolling="no" src="https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2Fautismspeaks%2Fvideos%2F10154953956272497%2F&amp;show_text=0&amp;width=560" style="border:none;overflow:hidden" width="560"></iframe></p> <p>On Jan. 25, Autism Speaks VP for Genomic Discovery Mat Pletcher hosted a Facebook Live chat about the Autism Speaks research program. View the archived chat - including an extended question and answer session - above.</p> <h4 class="rtecenter" style="color: red;"> <strong>* * *&nbsp;</strong></h4> <p><strong>* * *&nbsp;</strong></p> <p><strong><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/atn_webinar_thumb.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></strong></p> <h3 style="color:blue;"> <br /> <strong>Advances in autism research and healthcare</strong></h3> <p><em>Webinars sponsored by the Autism Speaks Autism Treatment Network &amp; the Autism Intervention Research Network on Physical Health</em></p> <p>&ldquo;Advances in Autism Research &amp; Care&rdquo; is a monthly webinar series sponsored by the Autism Speaks Autism Treatment Network as part of its federally funded role as the nation&rsquo;s Autism Intervention Research on Physical Health. In focus, the webinars alternate between research reports by ATN/AIR-P investigators and trending topics in autism healthcare.</p> <p>Though focused on educating healthcare providers, the webinars are open to the public. Members of the autism community are particularly welcome.</p> <p>Research webinars feature current AIR-P research study investigators, while care focused themes cover hot topics in the field of autism, and promote idea generation for future research.</p> <h4 class="rtecenter" style="color: blue;"> <strong>Watch archived recordings of past ATN/AIR-P webinars&nbsp;<a href="https://www.youtube.com/channel/UC7INEshgb5A2AvvKPOmM4QQ">here</a></strong><strong>.</strong></h4> <p class="rtecenter">Contact&nbsp;<a href="mailto:awolfe2@mgh.harvard.edu">Audrey Wolfe</a>&nbsp;for more information about this webinar series.</p> <h3 style="color:blue;"> <strong>The potential role of epigenetics in sex differences in autism</strong></h3> <p>&nbsp;</p> <div class="media_embed" height="315px" width="560px"> <iframe allowfullscreen="" frameborder="0" height="315px" src="https://www.youtube.com/embed/T_7PAiKj1tg" width="560px"></iframe></div> <p>&nbsp;</p> <p> Presented on Nov. 15, 2016, by neuroscientist <a href="http://www.med.upenn.edu/apps/faculty/index.php/g293/p4061130">Tracy Bale</a>, of the Perelman School of Medicine at the University of Pennsylvania, with an introduction by neurodevelopmental neuroscientist <a href="https://statelab.ucsf.edu/donna-werling">Donna Werling</a>, of the University of California-San Francisco. <strong>Watch the archived webcast <a href="http://asfpodcast.org/?p=275">here</a>.&nbsp;</strong>This webinar is part of the Environmental Epigenetics of Autism Webinar Series co-organized by Autism Science Foundation, Autism Speaks and the Escher Family Fund for Autism.</p> <h3 class="rtecenter" style="color:red;"> &nbsp;</h3> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/autism_brainnet_webinar_hero.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <h3 class="rtecenter" style="color:red;"> Listen to the archived podcast <a href="http://asfpodcast.org/?p=257">here</a>.&nbsp;</h3> <p>Autism BrainNet is dedicated to advancing the highest quality research on autism through the generous post-mortem donation of brain tissue from families affected by the disorder. To learn more about the program &ndash; including information about registering your family &ndash; click <a href="https://autismbrainnet.org/">here</a>.</p> <p>&nbsp;</p> Science autism health care autism research autism webinars epigenetics of autism Facebook Live Chat IACC Interagency Autism Coordinating Committee Fri, 07 Jul 2017 18:53:10 +0000 Jessica Sachs 313596 at https://www.autismspeaks.org Autism and Health: A Special Report by Autism Speaks https://www.autismspeaks.org/science/science-news/autism-and-health-special-report-autism-speaks <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Advances in understanding and treating the physical and mental health conditions that frequently accompany autism </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Advances in understanding and treating the physical and mental health conditions that frequently accompany autism</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/special_report_hero.jpg?1493064346" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/special_report_hero.jpg?1493064364" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">May 26, 2017</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/special_report_hero.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>This spring, Autism Speaks issued the first in a series of annual, in-depth reports on special topics in autism &ndash; <em>Autism and Health: Advances in Understanding and Treating the Health Conditions that Frequently Accompany Autism</em>.</p> <p>The last decade has brought tremendous advances in understanding and addressing the many physical and mental health conditions that frequently accompany autism. We now know that autism is a whole-body disorder for many people on the spectrum. Its common co-morbidities include epilepsy, gastrointestinal distress, sleep disturbances, eating and feeding challenges, attention deficit and hyperactivity disorder (ADHD), anxiety, depression, schizophrenia and bipolar disorder.</p> <p>While each new piece of high-quality research adds to our understanding of autism, it also adds to the complexity of developing the best practices to address the diverse needs of the autism community.</p> <p>So in this, our inaugural special report, we have gathered the most-authoritative research on autism-associated health conditions and the latest guidelines on treatment and support for those affected by them.</p> <p>This report &ndash; and much of the research behind it &ndash; would not be possible without the passion and generosity of our community of volunteers, donors and families.</p> <h4 align="center" style="color: blue;"> <strong>You can download a copy of the 35-page report from our website</strong><br /> <strong><a href="https://www.autismspeaks.org/sites/default/files/docs/facts_and_figures_report_final_v3.pdf">here</a>.</strong></h4> Science anxiety ASD autism autism and health bipolar depression Epilepsy GI premature mortality schizophrenia sleep Special Report by Autism Speaks Thu, 06 Jul 2017 07:30:50 +0000 Jessica Sachs 323301 at https://www.autismspeaks.org Autism Speaks at the International Meeting for Autism Research 2017 https://www.autismspeaks.org/science/science-news/autism-speaks-international-meeting-autism-research-2017 <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> A look at more than 50 presentations by Autism Speaks science staff and funded researchers at IMFAR 2017, May 10-13, in San Francisco </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>A look at more than 50 presentations by Autism Speaks science staff and funded researchers at IMFAR 2017, May 10-13, in San Francisco</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/as_at_imfar_2017_thumb.jpg?1493406981" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/as_at_imfar_2017.jpg?1493406816" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">May 09, 2017</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/as_at_imfar_2017.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /><br /> Autism Speaks is proud to be a major sponsor of the International Meeting for Autism Research (IMFAR), taking place May 10 - 13 in San Francisco. The annual meeting is the world&rsquo;s largest gathering of autism scientists, doctors, therapists, parents and individuals on the spectrum.</p> <p>Events include more than 50 scientific presentations by Autism Speaks science staff and affiliated researchers supported by project grants and other resources. You can view the full lineup of Autism Speaks-affiliated presentations and activities in the program book below.</p> <p>&ldquo;I&rsquo;m particularly pleased to see how this year&rsquo;s presentations reflect the growth in research focused on teens and adults,&rdquo; says Autism Speaks Chief Science Officer Thomas Frazier. &ldquo;It&rsquo;s crucial that we first grow our understanding of their needs across autism&rsquo;s full spectrum. This will enable us to develop and adapt strategies to better address areas of particular need, including the successful transition to work and independent living, as well as treatments for associated physical and mental health issues.&rdquo;</p> <h3 class="rtecenter" style="color:red;"> Update&nbsp;</h3> <p><em>This year&rsquo;s IMFAR press conference featured two Autism-Speaks funded studies: on the benefits of teaching parents how to improve interactions with babies at risk for autism and of using body sensors to monitor agitation and stress in nonverbal study participants and students who have autism. Watch the archived press conference at the bottom of this page.&nbsp;</em></p> <p><iframe class="scribd_iframe_embed" data-aspect-ratio="0.7729220222793488" data-auto-height="false" frameborder="0" height="600" id="doc_96779" scrolling="no" src="https://www.scribd.com/embeds/346929336/content?start_page=1&amp;view_mode=scroll&amp;access_key=key-EDZsemcENLhlRZ5mIMQA&amp;show_recommendations=true" width="100%"></iframe></p> <p class="rtecenter"><strong>Download the AutismSpeaks@IMFAR2017 program <a href="https://www.autismspeaks.org/sites/default/files/docs/as_grantees_at_imfar_2017_final_with_new_cover_1.pdf">here</a>.</strong></p> <h3 class="rtecenter"> <strong>View the IMFAR 2017 press conference below, including study presentations by Autism Speaks-funded researchers Jonathan Green and Matthew Goodwin.</strong></h3> <p>&nbsp;</p> <div class="media_embed" height="400px" width="400px"> <iframe allowfullscreen="true" allowtransparency="true" frameborder="0" height="400px" scrolling="no" src="https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2FIMFAR2017%2Fvideos%2F1915206751838859%2F&amp;show_text=0&amp;width=400" style="border:none;overflow:hidden" width="400px"></iframe></div> <p>&nbsp;</p> <p>&nbsp;</p> Science autism research Autism Speaks IMFAR 2017 International Meeting for Autism Research Fri, 05 May 2017 13:00:00 +0000 Jessica Sachs 323471 at https://www.autismspeaks.org FDA invites autism community to guide May 4 meeting on medicine development https://www.autismspeaks.org/science/science-news/fda-invites-autism-community-guide-may-4-meeting-medicine-development <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Participate in person or online; panelists include Autism Speaks Chief Science Officer Thomas Frazier, the father of a child who has autism </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Participate in person or online; panelists include Autism Speaks Chief Science Officer and autism researcher Thomas Frazier, the father of a child who has autism</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/fda_pfdd_autism_community_hero_.jpg?1493400646" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/fda_pfdd_autism_community_hero_.jpg?1493400658" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">April 25, 2017</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/fda_pfdd_autism_community_hero_.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /><br /> The Food &amp; Drug Administration (FDA) invites people living with autism, family members and advocates to participate in a meeting and panel discussion on Patient-Focused Drug Development for Autism, Thursday May 4, from 1 to 5 pm Eastern. In particular, the FDA seeks the community&rsquo;s views on treatment approaches and personal stories of how autism affects daily life.</p> <p>Patient-focused drug development incorporates the patient&rsquo;s voice in the development and FDA evaluation of new medicines.</p> <p>Panelists at the May 4 meeting will include Autism Speaks Chief Science Officer Thomas Frazier, the parent of a child who has autism. A clinical psychologist and autism researcher, Dr. Frazier directed the Center for Autism at Cleveland Clinic Children&rsquo;s Hospital before recently joining Autism Speaks.</p> <h3> <strong>The meeting will focus on two main discussion topics. </strong></h3> <p>First, the FDA wants to hear directly from affected individuals and family members about the symptoms that have the most significant effect on their lives. This includes learning about major worries and curtailed activities that are important to you.</p> <p>Second, the FDA wants to hear about how you currently manage autism-related challenges. This includes:</p> <p>* What you see as significant drawback to current treatments,</p> <p>* What you want to see in new treatments, and</p> <p>* What factors you consider when making decisions about managing autism-related symptoms and challenges.</p> <p>The meeting will be held on the FDA&rsquo;s Silver Spring campus and streamed via live webcast. To learn more and register, visit <a href="https://autismpfdd.eventbrite.com/" target="_blank">Public Meeting on Patient-Focused Drug Development for Autism</a>.</p> <p>In addition to inviting input at the public meeting, the FDA asks members of the autism community to share their perspectives and answer a series of related questions through the Federal Register public docket <a href="https://www.federalregister.gov/d/2017-04229">here</a>. This docket link will remain open until July 5, 2017.</p> Science Autism Spectrum FDA Food and Drug Administrations new medicines for autism Patient Centered Drug Development self advocacy Thomas Frazier Tue, 25 Apr 2017 17:31:53 +0000 Jessica Sachs 323466 at https://www.autismspeaks.org IACC announces its top autism research advances of 2016 https://www.autismspeaks.org/science/science-news/iacc-announces-its-top-autism-research-advances-2016 <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> The U.S. Interagency Autism Coordinating Committee (IACC) has published its annual summary of advances in autism research, with portfolio analysis and searchable funding database </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>The U.S. Interagency Autism Coordinating Committee (IACC) has published its annual summary of advances in autism research, with portfolio analysis and searchable funding database</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/iacc_reports_2017_hero.jpg?1493234716" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/iacc_reports_2017_hero.jpg?1493234708" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">April 24, 2017</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/iacc_reports_2017_hero.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>The <a href="https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fiacc.hhs.gov%2F&amp;data=02%7C01%7CJessica.Sachs%40autismspeaks.org%7C64d89bf7508943ba127508d48c0a9cf8%7C5e19f50f01744cac878b851ca149b7cd%7C0%7C0%7C636287424603496834&amp;sdata=OXBgYickMDAKlskvJxlP6hzgdHiKmqsDlHQ0gy0ED%2BA%3D&amp;reserved=0">Interagency Autism Coordinating Committee (IACC)</a> has published its annual list of the past year&rsquo;s highlights in autism research &ndash; <em><a href="https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fiacc.hhs.gov%2Fpublications%2Fsummary-of-advances%2F2016%2F&amp;data=02%7C01%7CJessica.Sachs%40autismspeaks.org%7C64d89bf7508943ba127508d48c0a9cf8%7C5e19f50f01744cac878b851ca149b7cd%7C0%7C0%7C636287424603496834&amp;sdata=QEnEvzZC1ZtiPJre%2FNTc5hPDZ1v%2FjIQbDi7Eu5Cbx%2B4%3D&amp;reserved=0">2016 IACC Summary of Advances in Autism Spectrum Disorder Research</a></em>. The 20 selected reports include new findings on:</p> <p>* The challenges faced by high-risk siblings of children with autism,</p> <p>* Molecular changes underlying the biology of autism,</p> <p>* Risk factors for neurodevelopmental disorders,</p> <p>* Promising communication interventions,</p> <p>* The effects of federal and state policy changes on autism services, and</p> <p>* Health and employment outcomes for adults on the spectrum.</p> <p>Follow the title link above to learn more and download the full report.</p> <p>In addition, the IACC has published <em><a href="https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fiacc.hhs.gov%2Fportfolio-analysis%2F2013%2Findex.shtml&amp;data=02%7C01%7CJessica.Sachs%40autismspeaks.org%7C64d89bf7508943ba127508d48c0a9cf8%7C5e19f50f01744cac878b851ca149b7cd%7C0%7C0%7C636287424603496834&amp;sdata=cnn0JQbW11lEhUoOm7hPAaVZ36vRaiET%2F6HiZfmrOds%3D&amp;reserved=0">2013 Autism Spectrum Disorder Research Portfolio Analysis Report</a> </em>&ndash; an analysis of autism research against the goals laid out in the <em><a href="https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fiacc.hhs.gov%2Fpublications%2Fstrategic-plan%2F2013%2F&amp;data=02%7C01%7CJessica.Sachs%40autismspeaks.org%7C64d89bf7508943ba127508d48c0a9cf8%7C5e19f50f01744cac878b851ca149b7cd%7C0%7C0%7C636287424603496834&amp;sdata=0d8OKAen73dtDJz7sfkkQ1tDgNpn3yxXkjRhgrKMSqM%3D&amp;reserved=0">2013 IACC Strategic Plan Update</a>. </em>This information is also available in a searchable form in the recently redesigned and relaunched online <a href="https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fiacc.hhs.gov%2Ffunding%2Fdata%2F&amp;data=02%7C01%7CJessica.Sachs%40autismspeaks.org%7C64d89bf7508943ba127508d48c0a9cf8%7C5e19f50f01744cac878b851ca149b7cd%7C0%7C0%7C636287424603496834&amp;sdata=mZFPEKK5Ba3MMgCt4shjNdnF8q2X40Kw%2F615XMkMYWg%3D&amp;reserved=0">IACC/OARC Autism Research Database</a>.</p> <p>For more information about the IACC&rsquo;s publications and activities, visit <a href="https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fwww.iacc.hhs.gov&amp;data=02%7C01%7CJessica.Sachs%40autismspeaks.org%7C64d89bf7508943ba127508d48c0a9cf8%7C5e19f50f01744cac878b851ca149b7cd%7C0%7C0%7C636287424603496834&amp;sdata=J1FsraeHg9%2FuTNGE%2Fc2ki9or2BMvQBGknYPoDlfKnvk%3D&amp;reserved=0">www.iacc.hhs.gov</a>.</p> <p>&nbsp;</p> Science autism research IACC Interagency Autism Coordinating Committee Mon, 24 Apr 2017 19:34:04 +0000 Jessica Sachs 323381 at https://www.autismspeaks.org Autism and the transition to adult healthcare: Guidelines for lifelong care https://www.autismspeaks.org/science/science-news/autism-and-transition-adult-healthcare-guidelines-lifelong-care <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Parents of teenager with autism and complex medical needs seek guidance for the transition from pediatric to adult healthcare </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Parents of teenager with autism and complex medical needs seek guidance for the transition from pediatric to adult healthcare</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/got-questions-400-x-300_3.jpg?1492100825" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/teen_doc_courtesy_ohiostateuwexnermedctr_2.jpg?1499894750" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">April 20, 2017</span> </div> </div> </div> <h3> <br /> Our teenage son, who has autism, will soon be aging out of the pediatric practice where he has a medical team coordinating care for a number of medical issues. As we start planning his transition to adulthood, we&rsquo;re wondering whether there are medical guidelines for the lifelong care of individuals with autism.</h3> <p><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/teen_doc_courtesy_ohiostateuwexnermedctr.jpg" style="margin-right: auto; margin-left: auto; max-width: 100%; display: block; border-width: 0px; border-style: solid;" title="Photo courtesy Ohio State Wexner Medical Center" /></p> <p><em><img align="left" alt="" border="0" src="http://www.autismspeaks.org/sites/default/files/docs/dan_coury_3.jpg" style="padding:5px;margin-right: 5px; border: 0px;" />&nbsp;</em><br /> <em>Today&rsquo;s &ldquo;Got Questions?&rdquo; response is from developmental pediatrician Daniel Coury, medical director of&nbsp;</em><a href="http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/visual-supports"><em>Autism Speaks Autism Treatment Network (ATN)</em></a><em>. Dr. Coury is also the chief of developmental-behavioral pediatrics at Nationwide Children&rsquo;s Hospital, in Columbus, Ohio.</em></p> <p>Thank you for your very important question. Too many young adults with autism fall off the map, so to speak, in the transition from pediatric to adult healthcare. Within the <a href="http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/what-atn">Autism Speaks Autism Treatment Network</a> (ATN), we&rsquo;re working hard to help families prepare for this transition, beginning in adolescence.</p> <p>I&rsquo;m happy to report that one of our centers &ndash; the Vanderbilt Kennedy Center, in Nashville &ndash; has taken the lead in developing the kind of guidelines you seek.</p> <p><strong>Vanderbilt&#39;s online guidelines for healthcare providers</strong><br /> <a href="http://vkc.mc.vanderbilt.edu/etoolkit/"><em>Health Care for Adults with Developmental Disabilities</em></a> is an online tool kit for primary-care physicians. Importantly, it contains a healthcare &ldquo;<a href="http://vkc.mc.vanderbilt.edu/etoolkit/physical-health/health-watch-tables-2/checklist-autism/">Checklist for Autism</a>.&rdquo; This checklist guides the physician through autism-specific considerations and recommendations for medical issues including sleep, dental health; gastrointestinal health, sexuality, mental health and much more.</p> <p>The &ldquo;considerations&rdquo; section of the checklist highlights physical and mental health conditions that frequently co-occur with autism. The &ldquo;recommendations&rdquo; section lists useful exams and tests with their suggested frequency.</p> <p>When it&rsquo;s time for your son to transition out of pediatric care, we suggest that you bring this checklist to his new primary care doctor. What&rsquo;s more, the recommendations aren&rsquo;t limited to adults. They likewise include guidance on pediatric healthcare. So you may want to share it with your son&rsquo;s current medical team as well.</p> <p>If your son&rsquo;s new doctors have little experience with autism, you might likewise share the Vanderbilt tool kit&rsquo;s section on &ldquo;<a href="http://vkc.mc.vanderbilt.edu/etoolkit/general-issues/communicating-effectively/">Communicating Effectively</a>&rdquo; with patients who have developmental disabilities.</p> <p><strong>ATN/AIR-P treatment guidelines</strong><br /> Not coincidentally, many of the guidelines in the Vanderbilt tool kit&rsquo;s &ldquo;Autism Checklist&rdquo; are based on best-practices developed by clinicians in the ATN. This work has been made possible by the ATN&rsquo;s role as the federally funded <a href="http://www.airpnetwork.org">Autism Intervention Research Network on Physical Health</a> (AIR-P).</p> <p>Last year, the journal <em>Pediatrics </em>published a number of our best-practices research reports in a special supplement. You can access the entire supplement &ndash; or direct your son&rsquo;s physicians to it &ndash; <a href="http://pediatrics.aappublications.org/content/130/Supplement_2">here</a>.</p> <p>We look forward to the day when we have Autism Centers of Excellence for adult healthcare modeled after the ATN&rsquo;s pediatric care centers. Until then, our clinicians continue to educate community physicians on the special healthcare and communication needs of individuals with autism throughout their lifespan.</p> <p>We wish you and your family the best. Please contact us again to tell us how your son is doing.</p> <p><img align="left" alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/atn_logo_2015.jpg" style="padding:5px;margin-right: 5px; border: 0px;" /></p> <h4 style="color: blue;"> <br /> <strong><em>* Learn more about the Autism Speaks Autism Treatment Network&nbsp;</em></strong><a href="http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/what-atn"><strong>here</strong></a><strong><em>. <p> * Find the ATN center nearest you&nbsp;</p></em></strong><a href="http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/where-can-i-find-atn-location"><strong>here</strong></a><strong><em>. <p> * Explore our archive of ATN expert-advice blogs and news stories&nbsp;</p></em></strong><a href="http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/atn-news-and-blogs"><strong>here</strong></a><strong><em>.</em></strong></h4> <p class="rtecenter"><strong><em>Got more questions?</em></strong><em>&nbsp;Send them to GotQuestions@autismspeaks.org.&nbsp;</em><br /> &nbsp;</p> Science AIR-P ATN autism medical guidelines Autism Speaks Autism Treatment Network Dan Coury Daniel Coury Got Questions healthcare for individuals with autism medical guidelines for care of individuals with autism Vanderbilt Sun, 12 Feb 2017 10:05:55 +0000 260726 at https://www.autismspeaks.org Populations in movement: Addressing the needs of migrants with autism https://www.autismspeaks.org/science/science-news/populations-movement-addressing-needs-migrants-autism <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> In recognition of World Autism Awareness Day, United Nations panel discusses challenges and solutions to providing services to refugees and other migrants </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>In recognition of World Autism Awareness Day, United Nations panel discusses challenges and solutions to providing services to refugees and other migrants </p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/waad_un_2017_thumb.jpg?1490995828" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/waad_un_2017_hero.jpg?1490995845" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">March 31, 2017</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/waad_un_2017_hero.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /><br /> In recognition of World Autism Awareness Day 2017, a panel of international leaders convened at the United Nations Headquarters in New York City to discuss challenges and opportunities for the delivery of care and services to migrants with autism and other developmental disabilities. The event&rsquo;s co-hosts included the permanent UN missions of Qatar, Bangladesh, China, India and Turkey, together with Autism Speaks.</p> <p>Held annually at the UN headquarters, the event brings together international leaders to develop solutions for the most-pressing issues facing the global autism community. This year&rsquo;s panel focused on the largely unmet need for autism services and supports in an increasingly mobile world &ndash; with more individuals and families moving in search of security and opportunities than ever before.</p> <p>Moderated by CBS News foreign affairs analyst <strong>Pamela Falk</strong>, the panelists included:</p> <p>&bull; <strong>Werner Obermeyer</strong>, deputy to the executive director of the World Health Organization (WHO) Office at the United Nations;</p> <p>&bull; <strong>Suzanne Sheldon</strong>, senior advisor and team leader for the <a href="https://www.iom.int/global-compact-migration">Global Compact on Migration</a>, International Organization for Migration to the UN;</p> <p>&bull; <strong>Donald Wertlieb</strong>, of the Tufts University department of child development and coordinator of the Early Childhood Development Task Force for the <a href="http://www.gpcwd.org/">Global Partnership for Children with Disabilities</a> and the United Nations International Children&#39;s Emergency Fund; and</p> <p>&bull; <strong>Melissa Diamond</strong>, founder of a <a href="https://aglobalvoiceforautism.org/">Global Voice for Autism</a>.</p> <p>&bull; <strong>Zsuzsanna Szilvasy,</strong> president of <a href="http://www.autismeurope.org/about-us/our-structure/autism-europe-s-executive-committee.html">Autism Europe</a>.</p> <p>The organizers will summarize the panel&rsquo;s recommendations in a consensus document that they will share with all UN member states and post on the Autism Speaks website when completed.</p> <p align="center"><strong>View the archived video of the panel discussion &ndash; </strong><strong>&ldquo;Populations in Movement: Addressing the Opportunities and Challenges to Ensure Care and Services to Migrants with Autism and Developmental Disabilities&rdquo; &ndash; </strong><br /> <strong>at </strong><a href="http://webtv.un.org/"><strong>UN Web TV</strong></a><strong>. </strong><br /> (Scroll down the page to &ldquo;Recent On-Demand Videos.)</p> Science autism services Bangladesh China GAPH India migrants Qatar refugees Turkey United Nations World Autism Awareness Day Global Autism Public Health World Autism Awareness Day Thu, 30 Mar 2017 19:53:12 +0000 Jessica Sachs 322171 at https://www.autismspeaks.org World’s largest autism genome database shines new light on many ‘autisms’ https://www.autismspeaks.org/science/science-news/world%E2%80%99s-largest-autism-genome-database-shines-new-light-many-%E2%80%98autisms%E2%80%99 <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Latest study from the Autism Speaks MSSNG program identifies 18 new autism-linked genes, deepening understanding of autism’s broad spectrum </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Latest study from the Autism Speaks MSSNG program identifies 18 new autism-linked genes, deepening understanding of autism’s broad spectrum</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/new_mssng_thumb_2017_copy.jpg?1488485069" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/new_mssng_hero_2017.png?1488484918" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">March 06, 2017</span> </div> </div> </div> <p><em>Eighty percent of the 61 gene variations discovered through MSSNG to date affect biochemical pathways that have clear potential as targets for future medicines</em></p> <p> <img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/new_mssng_hero_2017.png" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" />The newest study out of the <a href="http://www.mss.ng">Autism Speaks MSSNG project</a> &ndash; the world&rsquo;s largest autism genome sequencing program &ndash; identified an additional 18 gene variations that appear to increase the risk of autism. The new report&nbsp;appears this week in the journal&nbsp;<em>Nature Neuroscience</em>.&nbsp;It involved the analysis of 5,205 whole genomes from families affected by autism &ndash; making it the largest whole genome study of autism to date.</p> <p>The omitted letters in MSSNG (pronounced &quot;missing&quot;) represent the missing information about autism that the research program seeks to deliver.</p> <p>&ldquo;It&rsquo;s noteworthy that we&rsquo;re still finding new autism genes, let alone 18 of them, after a decade of intense focus,&rdquo; says study co-author Mathew Pletcher, Ph.D., Autism Speaks&rsquo; vice president for genomic discovery.&nbsp;&ldquo;With each new gene discovery, we&rsquo;re able to explain more cases of autism, each with its own set of behavioral effects and many with associated medical concerns.&rdquo;</p> <p><strong>Identifying subtypes to advance personalized treatment</strong></p> <p>To date, research using the MSSNG genomic database has identified 61 genetic variations that affect autism risk. The research has associated several of these with additional medical conditions that often accompany autism. The goal, Dr. Pletcher says, &ldquo;is to advance personalized treatments for autism by deepening our understanding of the condition&rsquo;s many subtypes.&rdquo;</p> <p>The findings also illustrate how whole genome sequencing can guide medical care today. For example, at least two of the autism-associated gene changes described in the new paper are also associated with seizures. Another has been linked to increased risk for cardiac defects, and yet another with adult diabetes. These findings illustrate how whole genome sequencing for autism can provide additional medical guidance to individuals, families and their physicians, the investigators say.</p> <p><strong>Many genes; a few key pathways</strong><br /> The researchers also determined that many of the 18 newly identified autism genes affect the operation of a small subset of biological pathways in the brain. All of these pathways affect how brain cells develop and communicate with each other. &quot;In all, 80 percent of the 61 gene variations discovered through MSSNG affect biochemical pathways that have clear potential as targets for future medicines, Dr. Pletcher adds.</p> <p>Increasingly, autism researchers are predicting that more-effective, personalized treatments will come from understanding these common brain pathways &ndash; and how different gene variations alter them.</p> <p><strong><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/ryan_and_steve.jpg" style="padding: 5px; margin-left: 5px; border: 0px; float: right;" title="Lead study author Ryan Yuen, left, and senior author Stephen Scherer, both of The Centre for Applied Genomics at the Hospital for Sick Children (SickKids), in Toronto. " />Not one autism, but many</strong></p> <p>&ldquo;The unprecedented MSSNG database is enabling research into the many &lsquo;autisms&rsquo; that make up the autism spectrum,&rdquo; says the study&rsquo;s senior investigator, Stephen Scherer, Ph.D.</p> <p>For instance, some of the genetic alterations found in the study occurred in families with one person severely affected by autism and others on the milder end of the spectrum, Dr. Scherer notes. &ldquo;This reinforces the significant neurodiversity involved in this complex condition,&rdquo; he explains. &ldquo;In addition, the depth of the MSSNG database allowed us to identify resilient individuals who carry autism-associated gene variations without developing autism. We believe that this, too, is an important part of the neurodiversity story.&rdquo;</p> <p>Dr. Scherer is the research director for the MSSNG project and directs The Centre for Applied Genomics at the Hospital for Sick Children (SickKids), in Toronto. MSSNG is a collaboration between the hospital, Autism Speaks and Verily (formerly Google Life Sciences), which hosts the MSSNG database on its cloud platform.</p> <p><strong>Beyond traditional genetics</strong><br /> Traditional genetic analysis looks for mutations, or &ldquo;spelling changes,&rdquo; in the 1 percent of our DNA that spells out our genes. By contrast, the MSSNG database allows researchers to analyze the entire 3 billion DNA base pairs that make up each person&rsquo;s genome.</p> <p>In their new study, the investigators went even further &ndash; looking beyond DNA &ldquo;spelling&rdquo; variations to find other types of genetic changes associated with autism. These included copy number variations (repeated or deleted stretches of DNA) and chromosomal abnormalities. Chromosomes are the threadlike cell structures that package and organize our genes.</p> <p>The researchers found copy number variations and chromosomal abnormalities to be particularly common in the genomes of people affected by autism.</p> <p>In addition, many of the copy number variations turned up in areas of the genome once considered &ldquo;junk DNA.&rdquo; Though this genetic &ldquo;dark matter&rdquo; exists outside of our genes, scientists now appreciate that it helps control when and where our genes switch on and off. The precise coordination of genetic activity appears to be particularly crucial to brain development and function.</p> <p><strong>An unprecedented resource</strong><br /> Through its research platform on the Google Cloud, Autism Speaks is making all of MSSNG&rsquo;s fully sequenced genomes directly available to researchers free of charge, along with a toolbox of analytic tools. In the coming weeks, the MSSNG team will be uploading an additional 2,000 fully sequenced autism genomes, bringing the total to over 7,000.</p> <p>Currently, more than 90 investigators at 40 academic and medical institutions are using the MSSNG database to advance autism research around the world.</p> <p>Autism Speaks is also funding the creation of a community portal that will allow study participants to explore their genomic information and share experiences with others who have similar genetic profiles.&nbsp;</p> <p><strong>For more about the MSSNG, visit&nbsp;</strong><a href="http://www.mss.ng/"><strong>www.mss.ng</strong></a><strong>.&nbsp;</strong></p> Science Autism Speaks Mathew Pletcher MSSNG Nature Neuroscience Stephen Scherer whole genome sequencing Mon, 06 Mar 2017 16:02:18 +0000 Jessica Sachs 317536 at https://www.autismspeaks.org Thomas Frazier joins Autism Speaks as Chief Science Officer https://www.autismspeaks.org/science/science-news/thomas-frazier-joins-autism-speaks-chief-science-officer <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Renowned clinical psychologist and autism researcher leads science program focused on life-enhancing research with real-world benefits </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Renowned clinical psychologist and autism researcher leads science program focused on life-enhancing research with real-world benefits</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/frazierthumb.jpg?1484862531" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/frazierbluelogo.jpg?1484862902" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">January 19, 2017</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/frazierbluelogo.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>Autism Speaks is pleased to announce that clinical psychologist and autism researcher Thomas Frazier II, PhD, has joined the organization as its chief science officer effective April 1, 2017.</p> <p>Dr. Frazier comes to Autism Speaks from Cleveland Clinic Children&#39;s, where he has directed its Center for Autism since 2013. Previously, he was the autism center&rsquo;s research director.</p> <p>Dr. Frazier&rsquo;s clinical interests include the assessment and behavioral treatment of children with autism spectrum disorder. His research includes pioneering work on the potential under-diagnosis of autism in girls and women, and the development of new and more-effective screening methods for identifying autism risk in babies.</p> <p>Dr. Frazier has published more than 100 research articles in peer-reviewed journals and presented more than 150 scientific abstracts and invited talks at national and international research conferences. Among the most recent of his many awards is a National Institute of Health Career Developmental Award supporting his multidisciplinary clinical research on the biological effects of autism-linked gene changes.</p> <p>Dr. Frazier is also the father of a son on the autism spectrum.</p> <p>&ldquo;I am excited to join Autism Speaks as chief science officer,&rdquo; said Dr. Frazier. &ldquo;As a parent and researcher, I have valued Autism Speaks since its inception as a driving force in advocacy and science for the autism community. I look forward to advancing research that will increase understanding of autism&rsquo;s causes, improve screening and diagnosis and develop effective interventions.&rdquo;</p> <p>&ldquo;With a career at the forefront of autism care and research, Dr. Frazier is uniquely suited to guide Autism Speaks as it embarks on its second decade with a powerful focus on life enhancing research with real world benefits,&rdquo; said Angela Geiger, president and CEO of Autism Speaks.</p> <p>Dr. Frazier received his undergraduate degree magna cum laude in psychology from John Carroll University, in University Heights, Ohio, and completed both his master&rsquo;s and doctoral degrees in clinical psychology at Case Western Reserve University. His postgraduate training includes an internship in clinical neuropsychology at Ann Arbor VA Medical Center and a fellowship in clinical neuropsychology at The Cleveland Clinic&rsquo;s Department of Psychiatry and Psychology, Section of Neuropsychology.</p> Science News Angela Geiger autism research Autism Speaks Chief Science Officer The Cleveland Clinic Thomas Frazier Thu, 19 Jan 2017 21:38:16 +0000 Jessica Sachs 316786 at https://www.autismspeaks.org You’re invited: Research-related webinars & webcasts of interest to the autism community https://www.autismspeaks.org/science/science-news/you%E2%80%99re-invited-research-related-webinars-webcasts-interest-autism-community <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/iacc_thumb_6.jpg?1475868068" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/iacc_hero_1.jpg?1475868146" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">January 16, 2017</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/iacc_hero.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>The National Institutes of Health invites the autism community to participate in the next full meeting of the Interagency Autism Coordinating Committee (IACC) on Wednesday, April 26,&nbsp;from 9 to 5 Eastern, on the campus of the National Institutes of Health. The meeting is open to the public, in person or via webcast and conference call. (See details below.)</p> <p>Under the mandate of the&nbsp;<a href="https://iacc.hhs.gov/news/2014/iacc-reauthorized-autism-cares-act.shtml">Autism CARES Act</a>, the IACC coordinates all autism research and service activities within the US Department of Health and Human Services. It is charged with ensuring that a wide range of ideas and perspectives are considered and discussed in a public forum.</p> <p>The meeting will be accessible in listen-only mode via live webcast (go to <a href="https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Fvideocast.nih.gov%2F&amp;data=02%7C01%7CJessica.Sachs%40autismspeaks.org%7C900c4239af904911b2e408d475f63686%7C5e19f50f01744cac878b851ca149b7cd%7C0%7C0%7C636263147750580011&amp;sdata=cHYY3GOWOs7ESXdrOePP%2BdjQhYXucG5I1fzujj9vwJU%3D&amp;reserved=0">http://videocast.nih.gov</a>) and conference call (from the US and Canada, call 800-857-9708; access code: 4617338).</p> <p>For in-person attendance, pre-registration is recommended via the <a href="https://na01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fiacc.hhs.gov%2Fmeetings%2F&amp;data=02%7C01%7CJessica.Sachs%40autismspeaks.org%7C0ce909f66a5941071c7208d47600ceb7%7C5e19f50f01744cac878b851ca149b7cd%7C0%7C0%7C636263193240909154&amp;sdata=VX7pYLNvr1TQfdrgxxVHaVjuDl5%2B3VtEMnobxPgYr1A%3D&amp;reserved=0" target="_blank">IACC Meetings</a> page. Seating is limited to room capacity on a first come/first served basis, with expedited check-in for the pre-registered.&nbsp;</p> <p>For more information, including directions, the day&rsquo;s agenda and related materials when they become available, visit the&nbsp;<a href="https://iacc.hhs.gov/meetings/" target="_blank">IACC Events</a>&nbsp;page and/or call 301-451-9436.</p> <h3 class="rtecenter" style="color:red;"> * * * * * &nbsp;</h3> <h3 class="rtecenter"> Autism Speaks CEO updates Interagency Autism Coordinating Committee on organization&#39;s &quot;Next Ten&quot; strategic plan</h3> <p>On Jan. 13th, Autism Speaks Chief Executive Officer Angela Geiger updated the federal Interagency Autism Coordinating Committee (IACC) on Autism Speaks new strategic plan at the committee&#39;s&nbsp;first quarterly meeting of 2017, at the National Institutes of Health, in Bethesda, Maryland. (Her presentation begins 30 minutes into the webcast.)</p> <h3 align="center" style="color:blue;"> <strong>View the archived webcast <a href="https://iacc.hhs.gov/meetings/multimedia/">here</a>.</strong></h3> <p>Under the mandate of the <a href="https://iacc.hhs.gov/news/2014/iacc-reauthorized-autism-cares-act.shtml">Autism CARES Act</a>, the IACC coordinates all autism research and service activities within the US Department of Health and Human Services. It is charged with ensuring that a wide range of ideas and perspectives are considered and discussed in a public forum.</p> <p>Interested in presenting comments at the next quarterly meeting or sending written comments on an issue important to you? Send them to <a href="mailto:iaccpublicinquiries@mail.nih.gov">iaccpublicinquiries@mail.nih.gov</a>.</p> <p>For more information, including the full day&rsquo;s agenda when it becomes available, visit the <a href="https://iacc.hhs.gov/meetings/" target="_blank">IACC Events</a> page.</p> <p><strong><em>View past IACC meetings and their agenda&rsquo;s </em></strong><a href="https://iacc.hhs.gov/meetings/iacc-meetings/archives/"><strong><em>here.</em></strong></a> <strong><em>View Autism Speaks coverage of past IACC meetings </em></strong><a href="https://www.autismspeaks.org/site-wide/iacc"><strong><em>here</em></strong></a><strong><em>.&nbsp;</em></strong></p> <p>&nbsp;</p> Advocacy Science Advocacy autism research Autism Votes IACC Interagency Autism Coordinating Committee Wed, 12 Apr 2017 16:59:09 +0000 Jessica Sachs 314021 at https://www.autismspeaks.org MSSNG Supporters https://www.autismspeaks.org/science/science-news/mssng-supporters <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Autism Speaks is immensely grateful for the supporters, who have made this cutting-edge research a reality. </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Autism Speaks is immensely grateful for the supporters, who have made this cutting-edge research a reality.</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/mssng_hero.jpg?1480611132" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/mssng_hero_6.jpg?1480611138" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">December 01, 2016</span> </div> </div> </div> <p>MSSNG is made possible by donors who understand the promise of investing in the breakthroughs of tomorrow, today. Autism Speaks thanks our sponsors for being visionaries in support of the autism community.</p> <h4 style="color: blue;"> Autism Speaks is immensely grateful for the supporters, who have made this cutting-edge research a reality.</h4> <ul> <li> Frank Bennack</li> <li> Bloomberg Philanthropies</li> <li> Carbonell Family Foundation</li> <li> Barry Cohen</li> <li> Cuong Do</li> <li> Barry Feirstein</li> <li> Vincent Forlenza</li> <li> Thomas Garfinkel</li> <li> The Gordon and Llura Gund Foundation</li> <li> The Hearst Foundation</li> <li> Matt Higgins</li> <li> The Homestead Foundation, Inc.</li> <li> Allen Jefferson</li> <li> Mel Karmazin</li> <li> Brian Kelly</li> <li> KRG Children&#39;s Charity</li> <li> The Albert &amp; Tammy Latner Family Foundation</li> <li> Leonard &amp; Judy Lauder Fund</li> <li> Daniel Lewis</li> <li> Charles Lorimer</li> <li> Michael Lukacs</li> <li> Gary Mayerson</li> <li> Michael Moser</li> <li> NFP Canada</li> <li> Reuter Foundation</li> <li> Stuart Savitz</li> <li> David &amp; Allison Scharf</li> <li> Henry J &amp; Kathleen Singer Family Foundation</li> <li> AJ Vaynerchuk</li> <li> Stephen and Diane Volk</li> <li> Wasily Family Foundation</li> <li> Bob Wright</li> </ul> <h4 style="color: blue;"> <a href="http://act.autismspeaks.org/site/Donation2?df_id=1896&amp;mfc_pref=T&amp;1896.donation=form1">Join as a MSSNG supporter today</a></h4> Science MSSNG Wed, 30 Nov 2016 18:58:37 +0000 peter.pugliese 315331 at https://www.autismspeaks.org MSSNG in the news: ‘Study aims to crack autism code’ https://www.autismspeaks.org/science/science-news/mssng-news-%E2%80%98study-aims-crack-autism-code%E2%80%99 <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> CBC’s The National spotlights MSSNG researchers and families – sharing hopes for global and personal solutions </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>CBC’s The National spotlights MSSNG researchers and families – sharing hopes for global and personal solutions</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/the_national_thumb.jpg?1477574857" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/the_national_hero_.jpg?1477574863" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">October 27, 2016</span> </div> </div> </div> <p>&nbsp;</p> <div class="media_embed" height="315px" width="560px"> <iframe allowfullscreen="" frameborder="0" height="315px" src="https://www.youtube.com/embed/bX-IIeETQ2o" width="560px"></iframe></div> <p>&nbsp;</p> <p>This week, The National &ndash; the nightly news program of Canada&rsquo;s CBC network &ndash; spotlights&nbsp;the Autism Speaks MSSNG project, the world&rsquo;s largest open-access genomic database on autism. MSSNG is producing ground-breaking discoveries into the causes and&nbsp;biology of autism, while providing meaningful information for families.</p> <p>In the 15-minute segment &ndash; &ldquo;Study Aims to Crack Autism Code&rdquo; &ndash; we meet two families profoundly affected by their participation in MSSNG. They describe how the results of their genome sequencing give them perspective and hope for their children&rsquo;s future.</p> <p>The segment also features geneticists Mat Pletcher, Autism Speaks&rsquo; interim chief science officer and vice president for genomic discovery, and Steve Scherer, MSSNG research director and head of the Centre for Applied Genomics at the Hospital for Sick Children, in Toronto.</p> <h4 style="color: blue;"> Learn more about MSSNG <a href="https://www.mss.ng/about">here</a>.&nbsp;</h4> Science CBC families participating in autism research Mat Pletcher MSSNG Steve Scherer The National Thu, 27 Oct 2016 13:30:04 +0000 Jessica Sachs 314562 at https://www.autismspeaks.org Folinic acid improves communication, eases autism symptoms in small study https://www.autismspeaks.org/science/science-news/folinic-acid-improves-communication-eases-autism-symptoms-small-study <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Benefit greatest in kids who have antibody that might block vitamin’s transport into brain cells – a potential indicator of who will respond to treatment </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Benefit greatest in kids who have antibody that might block vitamin’s transport into brain cells – a potential indicator of who will respond to treatment</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/as_research_thumb_4.jpg?1476476869" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/as_research_hero_0.jpg?1476476877" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">October 18, 2016</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/images/zales/science-685-x-385.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>In a small pilot study <a href="http://bit.ly/2cKlNqV">funded by Autism Speaks</a>, treatment with folinic acid &ndash; a naturally occurring form of folate &ndash; improved communication and eased autism symptoms in language-impaired children who have autism. The gains were greatest in a subgroup of children who tested positive for an <a href="http://medical-dictionary.thefreedictionary.com/Autoantibodies">autoantibody</a> that may partially block&nbsp;this vitamin from entering brain cells.</p> <p>Folinic acid is a more metabolically active form of folate (also known as B9) than is folic acid, the synthetic form of folate found in many prenatal and children&rsquo;s vitamins.</p> <p><img align="right" alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/funded_by_logo_2016.jpg" style="padding:5px;margin-left: 5px; border: 0px;" /><strong><a href="http://nature.com/articles/doi:10.1038/mp.2016.168">The findings</a> appear today in the scientific journal <a href="http://www.nature.com/mp/index.html"><em>Molecular Psychiatry</em></a><em>. </em></strong></p> <p>&ldquo;Though caution is needed with any small study, we hope these results will lead to the kind of large trial needed to fully validate a promising experimental treatment for a subset of individuals with autism,&rdquo; comments Autism Speaks Interim Chief Science Officer Mathew Pletcher. &ldquo;If confirmed by further research, this would exemplify the promise of personalizing treatments for autism&rsquo;s many causes and subtypes.&rdquo;</p> <p>In the study, the researchers randomly selected 48 nonverbal or minimally verbal children with autism (average age 7 years) to take either two daily doses of folinic acid (up to 50 mg per day depending on body weight) or a look-alike dummy pill. Folinic acid occurs naturally in many foods (lentils, liver and many green vegetables), but at much lower levels.</p> <p>Neither the researchers, the children nor their families knew who received the actual treatment (23 children) and who received the placebo (25 children) until after the 12-week trial concluded. Before and after the trial, the researchers administered standardized tests to measure verbal communication and behavioral symptoms of autism.</p> <p>As a group, the children who took the folinic acid showed greater improvements in both verbal communication and behavioral symptom severity. However, the improvements were significantly greater among a subset of ten children in the folinic acid group who tested positive for an autoantibody. According to the researchers&#39; theory, the antibody may interfere with the transport of the nutrient into brain cells.</p> <p>The researchers propose that high doses of folinic acid helped improve brain function by overcoming this blockade and restoring normal folate levels inside brain cells. The theory is based on <a href="http://www.nature.com/mp/journal/v18/n3/full/mp2011175a.html">previous research by the group</a>, which detected this folate-blocking autoantibody in 60 percent of children who have autism, but just 3 percent of children with developmental delays that do not involve autism.</p> <p>The findings are also in line with a large body of <a href="https://www.autismspeaks.org/science/science-news/top-ten-lists/2011/prenatal-vitamins-and-after-conception-may-decrease-autism-r">research</a>, by other scientists, showing that women who take prenatal vitamins containing folate have a lower risk of having children affected by autism.</p> <p>&ldquo;These observations suggest that identifying autism and the presence of folate receptor autoantibodies early in life may present an opportunity to prevent at least some of autism&rsquo;s developmental deficits with folinic acid treatment,&rdquo; says senior researcher Edward Quadros, of the State University of New York Downstate Medical Center. Before such treatment can be recommended, larger studies are needed to confirm safety and effectiveness.&nbsp;</p> Science autism autism research Autism Speaks autism study folic acid folinic acid vitamin B-9 Tue, 18 Oct 2016 13:00:38 +0000 Jessica Sachs 314221 at https://www.autismspeaks.org Podcast on including the minimally verbal in autism research https://www.autismspeaks.org/science/science-news/podcast-including-minimally-verbal-autism-research <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Autism Speaks-funded researcher Helen Tager-Flusberg describes ways to broaden autism research to include a neglected population </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Autism Speaks-funded researcher Helen Tager-Flusberg describes ways to broaden autism research to include a neglected population </p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/ipad_pointing_thumb.jpg?1473186557" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/ipad_pointing_hero.jpg?1473186580" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">September 06, 2016</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/speech-generating_ipad_hero_2.jpg " style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>In this month&rsquo;s <em>Autism Matters </em>podcast, host <a href="http://www.gold.ac.uk/psychology/staff/crane-laura/">Laura Crane</a> interviews Autism Speaks-funded researcher <a href="https://plu.mx/autismspeaks/u/autismspeaks-htflusberg">Helen Tager-Flusberg</a> about innovative ways to include nonverbal and minimally verbal children and adults in autism research.</p> <p>&ldquo;In part [this is] because of the challenging behaviors they present alongside their very limited means for communication,&rdquo; Dr. Tager-Flusberg <a href="http://aut.sagepub.com/content/early/2016/06/25/1362361316654605.abstract">writes in this month&rsquo;s issue of <em>Autism</em></a>.</p> <p>In the podcast and its related article, Dr. Tager-Flusberg discusses some of the methods she has successfully used to include this often-neglected group in her studies. She also discusses some of the advances in understanding autism that have resulted from involving those who have little or no language. &nbsp;</p> <h4 style="color: blue;"> <strong>* Listen to the podcast </strong><a href="http://traffic.libsyn.com/sagepsychology/Autism_Matters_Podcast_Number_19_-_Minimally_verbal_individuals_with_autism.mp3"><strong>here</strong></a><strong>:</strong></h4> <h4 style="color: blue;"> <strong>* Read about Dr. Tager-Flusberg&rsquo;s Autism Speaks funded research and fellowships </strong><a href="https://science.grants.autismspeaks.org/search/results.php?newsearch=1&amp;source%5B%5D=both&amp;status%5B%5D=both&amp;search=Tager-Flusberg&amp;title%5B%5D=&amp;investigator%5B%5D=&amp;postal_code%5B%5D=&amp;distance=100+miles"><strong>here</strong></a><strong>.</strong></h4> <h4 style="color: blue;"> <strong>* Learn more about the Autism Matters podcast series &ndash; and listen to past podcasts </strong><a href="https://na01.safelinks.protection.outlook.com/?url=http%3a%2f%2faut.sagepub.com%2fsite%2fpodcast%2fpodcast_dir.xhtml&amp;data=01%7c01%7cJessica.Sachs%40autismspeaks.org%7cf2859f4a70694078dc7d08d3d5d54233%7c5e19f50f01744cac878b851ca149b7cd%7c0&amp;sdata=bMx8H8Kd2mQqUtBAmLgT55%2bni%2fOU76UmDHkvbfm1wX8%3d"><strong>here</strong></a><strong>. </strong></h4> <p align="center"><strong>Also see &ldquo;<a href="https://www.autismspeaks.org/blog/2012/11/06/autism-speaks-and-signs">Autism Speaks (and signs)</a>&rdquo;</strong></p> <p>&nbsp;</p> Science autism research autism study Helen Tager-Flusberg minimally verbal Nonverbal participating in autism research Wed, 07 Sep 2016 08:32:05 +0000 Jessica Sachs 313106 at https://www.autismspeaks.org Diabetes drug counters weight gain associated with autism medicines https://www.autismspeaks.org/science/science-news/diabetes-drug-counters-weight-gain-associated-autism-medicines <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Study offers hope for children and teens who struggle with common a side effect of medications for reducing autism-associated agitation </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Study offers hope for children and teens who struggle with a common side effect of medications for reducing autism-associated agitation </p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/teen_doc_courtesy_osu_thumb.jpg?1472488982" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/weight_gain_atn-airp_hero.jpg?1472562539" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">August 29, 2016</span> </div> </div> </div> <p><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/teen_doc_courtesy_osu_0.jpg" style="margin-right: auto; margin-left: auto; max-width: 100%; display: block; border-width: 0px; border-style: solid;" title="Image courtesy Ohio State University Wexner Medical Center" /></p> <p>In a small new study, a commonly used diabetes drug curbed the troublesome weight gain that is a common side effect of the only two medicines approved for reducing agitation in children and teens with autism.</p> <p><img align="right" alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/atnwork_w_shadow_1.jpg" style="padding:5px;margin-left: 5px; border: 0px;" />The promising <a href="http://archpsyc.jamanetwork.com/article.aspx?articleid=2546510">results of the study</a> &ndash; which took place at four centers in the <a href="http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/what-atn">Autism Speaks Autism Treatment Network</a> (ATN) &ndash; appear in the latest issue of <a href="http://archpsyc.jamanetwork.com/"><em>JAMA Psychiatry</em></a>. The research was made possible by the ATN&rsquo;s federally funded role as the nation&rsquo;s <a href="http://www.airpnetwork.org/">Autism Intervention Research Network for Physical Health</a>.</p> <p>Risperidone (brand name Risperdal) and aripiprazole (Abilify) are the only medicines approved by the U.S. Food and Drug Administration for reducing agitation and irritability in children with autism spectrum disorder (ASD). These medicines become important when serious agitation &ndash; including aggression &ndash; does not respond to non-drug, behavioral therapy. However, both risperidone and aripiprazole commonly produce significant weight gain &ndash; a worrisome side effect given obesity&rsquo;s many associated health risks.</p> <p><strong>Controlling a serious side effect of autism medications</strong><br /> &quot;It&#39;s critically important that we investigate new ways to support healthy outcomes as early as possible for those who are on these medications,&quot; says pediatric neurologist Evdokia Anagnostou, the study&rsquo;s principal investigator and co-director of the Autism Speaks ATN at Toronto&rsquo;s Holland Bloorview Kids Rehabilitation Hospital. &quot;Use of antipsychotics to help manage irritability associated with ASD can sometimes be long&shy;-term, which means we need to provide families with solutions that support lasting optimal health in their children,&quot; she emphasizes.</p> <p>Over the course of 16 weeks, the researchers tracked changes in body mass and performed blood work on 60 study participants, ages 6 to 17. Twenty-eight of the children and teens took the diabetes drug metformin in addition to their usual dose of risperidone or aripiprazole. The rest took an inactive placebo pill along with their behavioral medicines. Neither the researchers nor the participating families knew who received the metformin and who received the dummy treatment until the end of the study.</p> <p><strong>A clear difference in weight control</strong><br /> As a group, those taking the placebo continued to gain weight over the course of the trial. By contrast, the group taking metformin saw an overall reduction in weight. Most remarkably, three participants taking metformin experienced an 8 to 9 percent decrease in body mass. The researchers saw no changes in obesity-associated metabolic measures such as insulin sensitivity and cholesterol. The 16-week study period may not have been long enough to detect such health benefits, they write.</p> <p>Overall, the metformin was &ldquo;well-tolerated,&rdquo; the researchers report. However, as a group, those taking metformin had more days of gastrointestinal issues such as constipation and diarrhea than did those taking the placebo. (This side effect was not associated with individual weight loss.) In addition, the researchers discontinued metformin in five children because of increased agitation or sedation that may or may not have been caused by the drug.</p> <p>Given the promising results of this small pilot study, the researchers call for follow-up studies enrolling more children for longer periods.</p> <p>&ldquo;Medications such as risperidone and aripiprazole are appropriate only for severe behavioral problems when non-drug approaches have not been adequate,&rdquo; adds developmental pediatrician Paul Wang, Autism Speaks&rsquo; head of medical research. &ldquo;It&rsquo;s good to know that metformin has the potential to help manage the weight gain that often accompanies these medications.&rdquo; (Dr. Wang was not directly involved in the study.)</p> <p>The Autism Speaks ATN centers participating in the study included the Holland Bloorview Kids Rehabilitation Hospital, in Toronto; Ohio State University Wexner Medical Center and Nationwide Children&rsquo;s Hospital, in Columbus; the University of Pittsburgh; and Vanderbilt University, in Nashville.</p> <p class="rtecenter"><em><strong>For more on this study, see the video below, courtesy The Ohio State University Wexner Medical Center.</strong></em></p> <p>&nbsp;</p> <div class="media_embed" height="315px" width="560px"> <iframe allowfullscreen="" frameborder="0" height="315px" src="https://www.youtube.com/embed/Pf-ERYusgDs" width="560px"></iframe></div> <p>&nbsp;</p> <h4 style="color: blue;"> <strong><em><img align="left" alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/atn_logo_2015.jpg " style="padding:5px;margin-right: 5px; border: 0px;" />* Learn more about the Autism Speaks Autism Treatment Network&nbsp;</em><a href="http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/what-atn">here</a><em>.<br /> * Find the ATN center nearest you&nbsp;</em><a href="http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/where-can-i-find-atn-location">here</a><em>.<br /> * Explore our archive of ATN expert-advice blogs and news stories&nbsp;</em><a href="http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/atn-news-and-blogs">here</a><em>.</em></strong></h4> Science Abilify AIR-P aripiprazole ATN Autism Intervention Research Network for Physical Health Autism Treatment Network diabetes metformin Risperdal risperidone School Age Transition Age weight gain Your ATN@Work Autism Treatment Network Mon, 29 Aug 2016 16:57:46 +0000 Jessica Sachs 312921 at https://www.autismspeaks.org Unraveling the mystery of autism: one person at a time https://www.autismspeaks.org/science/science-news/unraveling-mystery-autism-one-person-time <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Newsweek spotlights revolutionary research on the genetics that make each person’s autism unique – with a special nod to Autism Speaks MSSNG project </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Newsweek spotlights revolutionary research on the genetics that make each person’s autism unique – with a special nod to Autism Speaks MSSNG project</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/newsweek_genomics_thumb.jpg?1470930938" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/newsweek_genomics_hero.jpg?1470930945" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">August 11, 2016</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/newsweek_genomics_hero.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>&ldquo;If you&rsquo;ve seen one person with autism, you&rsquo;ve seen one person with autism.&rdquo; So begins Newsweek science writer Aimee Swartz&rsquo;s in-depth look at a new wave of research into autism&rsquo;s complex genetics with the aim of developing more personalized treatments.</p> <p>&ldquo;<a href="http://www.newsweek.com/unraveling-mystery-autism-one-person-time-489213">Unraveling the mystery of autism: one person at a time</a>&rdquo; shines a spotlight on the Autism Speaks MSSNG (pronounced &ldquo;missing&rdquo;) project and the Simons Foundation&rsquo;s SPARK project. Autism Speaks is also supporting SPARK through recruitment efforts at ten of its 14 <a href="https://www.autismspeaks.org/science/resources-programs/autism-treatment-network/where-can-i-find-atn-location">Autism Treatment Network</a> (ATN) sites and at many of its major <a href="http://www.autismspeakswalk.org/site/c.igIRL6PIJrH/b.7683511/k.2EFB/Walk_Now_for_Autism_Speaks_Home.htm?msource=findawalk">Walks</a>.</p> <p>Ms. Swartz writes:</p> <p>MSSNG goes beyond SPARK&rsquo;s plan of sequencing the exome&mdash;it will look at all 3.2 billion letters of genetic code in the human genome to get a more &ldquo;holistic&rdquo; view of the genetic underpinnings of autism, says Mathew Pletcher, interim chief scientific officer at Autism Speaks.</p> <p>With more than 5,000 [now 7,000] genomes already fully sequenced, the MSSNG data set has allowed scientists to discover new parts of the genome involved in autism that were previously missed, using techniques that look at only parts of the DNA. &ldquo;It also revealed that the disorder&rsquo;s genetic underpinnings are way more complex than previously thought,&rdquo; Pletcher says.</p> <p><strong>Read the full Newsweek feature story <a href="http://www.newsweek.com/unraveling-mystery-autism-one-person-time-489213">here</a>.&nbsp;</strong></p> Science ATN Autism Treatment Network MSSNG personalized treatments for autism whole genome sequencing Thu, 11 Aug 2016 16:01:46 +0000 Jessica Sachs 312266 at https://www.autismspeaks.org MSSNG study expands understanding of autism’s complex genetics https://www.autismspeaks.org/science/science-news/mssng-study-expands-understanding-autism%E2%80%99s-complex-genetics <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> &gt;Largest-ever whole genome autism study yields clues on how autism-linked gene changes arise in sperm, eggs and embryos. </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Largest-ever whole genome autism study yields clues on how autism-linked gene changes arise in sperm, eggs and embryos</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/mssng_thumb_5.jpg?1470065332" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/steve_ryan_mssng_hero.jpg?1470074079" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">August 04, 2016</span> </div> </div> </div> <div> <img alt="" border="0" class="caption" src="https://www.autismspeaks.org/sites/default/files/images/zales/steve_ryan_mssng_hero.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" title="In the largest-ever whole genome autism study, Ryan Yuen and Stephen Scherer used one of the world’s largest supercomputers – the high-performance computing facility at The Hospital for Sick Children – to analyze the whole genomes of 200 families in the Autism Speaks MSSNG project." /></div> <div> &nbsp;</div> <div> <div> A <a href="http://www.nature.com/articles/npjgenmed201627">new study</a> out of Autism Speaks&rsquo; <a href="https://www.mss.ng/news">MSSNG</a> program expands understanding of autism&rsquo;s complex causes and may hold clues for the future development of targeted and tailored treatments.</div> <div> <strong>&nbsp;</strong></div> <div> Learn more about <a href="https://www.mss.ng/">MSSNG</a>, Autism Speaks&rsquo; historic whole genome sequencing project here.</div> <div> &nbsp;</div> <div> The new research focuses on newly arising, or de novo, gene changes in the germline cells that produce a parent&rsquo;s eggs or sperm. <a href="https://www.autismspeaks.org/science/science-news/top-ten-lists/2011/de-novo-genetic-changes-provide-new-clues-autism">Previous studies</a> have shown that these mutations can be major contributors to autism through their effects on early brain development.</div> <div> &nbsp;</div> <div> <a href="http://www.nature.com/articles/npjgenmed201627">The report</a>, appearing in <em>npj</em><em> Genomic Medicine, </em>is the largest-ever whole genome study of autism, involving 200 children with the condition and both their unaffected parents.</div> <div> &nbsp;</div> <div> These 600 fully sequenced genomes came from <a href="https://www.mss.ng/news">MSSNG</a> (pronounced &ldquo;missing&rdquo;), the world&rsquo;s largest collection of autism genomes and a collaborative effort of Autism Speaks and The Hospital for Sick Children (SickKids), in Toronto. More than halfway to its goal of sequencingmore than 10,000 autism genomes, MSSNG has made this unprecedented resource freely available for worldwide research into the causes and personalized treatments for autism.</div> <div> &nbsp;</div> <div> Geneticists Stephen Scherer and Ryan Yuen, of SickKids, led the study team, which also included scientists with the University of Toronto, Google, BGI-Shenzhen (China) and Autism Speaks.</div> <div> &nbsp;</div> <div> <div> In their analysis, the researchers found:</div> <div> &nbsp;</div> <p> <strong>* An abundance of autism-linked changes in DNA outside of the gene-coding regions of the&nbsp;</strong><strong>genome.</strong> Traditional genetic testing largely ignores the non-coding regions of the genome &ndash; which make up 98 percent of our DNA. Coding DNA spells out our genes. Non coding DNA had long been considered &ldquo;junk,&rdquo; with no known function. Geneticists now appreciate that it helps regulate the activity of our genes. This regulation is particularly crucial for healthy brain development, which involves genes turning on and off at precisely the right times. This represents the most comprehensive assessment to date on the contribution of non-coding variants to autism,&rdquo; Dr. Yuen says. &ldquo;As such, it provides an important road map on how whole genome sequencing can advance autism research in the future.&rdquo;</p></div> <div> &nbsp;</div> <div> <strong>* A clear difference between the de novo mutations that come from the mother versus the father. </strong>The study confirmed<a href="https://www.autismspeaks.org/science/science-news/father%E2%80%99s-age-linked-increased-genetic-mutations-children"> previous findings</a> that most autism-linked de novo mutations come from the father and tend to increase with his age.</div> <div> <a href="https://www.autismspeaks.org/science/science-news/father’s-age-linked-increased-genetic-mutations-children"><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/images/science/science_news/fathers.jpg" style="margin-right: auto; margin-left: auto; max-width: 100%; display: block; border-width: 0px; border-style: solid;" title="Also see, “Father&amp;#39;s&nbsp;age linked to increased genetic mutations in children with autism.”" /></a></div> <div> &nbsp;</div> <div> <div> However, the researchers also found that clustered, or concentrated, stretches of de novo mutations tend to come from the mother. &ldquo;This new finding may be evidence that different types of gene-change and gene-repair mechanisms are at work in men versus women,&rdquo; Dr.Yuen says. Indeed, the clustered mutations from the mother tended to occur near stretches of deleted or repeated DNA called copy number variations (CNVs) &ndash; a type of mutation that the research team <a href="https://www.autismspeaks.org/science/science-news/autism-genome-project-delivers-genetic-guidebook-individualized-treatment">had previously linked to autism.</a></div> <div> &nbsp;</div> <div> In addition to genetic changes in egg and sperm, the analysis turned up autism-associated mutations that likely occurred in the embryo soon after fertilization. &ldquo;These genetic changes can arise due to environmental insults [such as exposure to toxic chemicals],&rdquo; Dr. Yuen says.</div> </div> <div> &nbsp;</div> <div> <div> <strong>* A new way to explore epigenetic risk factors for autism.</strong> The team also developed new methods to look at changes in the epigenetic control of gene expression. <a href="https://www.autismspeaks.org/node/123021">Epigenetics </a>is the study of proteins that wrap around our DNA to help regulate gene activity. These epigenetic controls can be disrupted by some &ndash; perhaps many &ndash; of the environmental influences suspected of increasing autism risk. Examples include exposure to certain pollutants, nutritional deficiencies and inflammation during pregnancy. Using their new test, the researchers found significantly disrupted epigenetic patterns in just over 1 percent of the genomes they analyzed.</div> <div> <h4 class="rtecenter" style="color: #459fd9;"> <strong><em>To learn more, see <a href="https://www.autismspeaks.org/node/123021">&ldquo;What is epigenetics and what does it have to do with autism.&rdquo;</a></em></strong></h4> <p><strong>* A cascade effect, with one altered gene affecting the expression of many other genes involved in brain development.</strong> &ldquo;Using new statistical methods and the whole genome sequence as a framework, we found genes with mutations that led to a cascade of changes in gene expression,&rdquo; Dr. Yuen says. This may help explain how the hundreds of rare gene changes associated with autism may converge to affect a few vital pathways in early brain development, he notes.</p> <div> <div> &ldquo;These findings advance our efforts to improve diagnostics and precision healthcare for autism,&rdquo; says geneticist Mathew Pletcher, Autism Speaks interim chief science officer and a co-author on the report. &ldquo;There&rsquo;s so much about the causes of autism that we would miss if we focused only on the gene-coding regions of the genome. This demonstrates again why whole genome sequencing is so important.&rdquo;</div> <div> &nbsp;</div> <div> &ldquo;These findings represent a step toward better understanding the interplay between the genetic and non-genetic factors that contribute to autism risk,&rdquo; Dr. Scherer adds. &ldquo;But we need to analyze many more whole genomes &ndash; such as the number being sequenced through MSSNG &ndash; to fully understand these intriguing findings.&rdquo; Dr. Scherer is project director for the Autism Speaks MSSNG program and directs the Centre for Applied Genomics at Toronto&rsquo;s Sick Children&rsquo;s Hospital.</div> <div> &nbsp;</div> <div> Dr. Yuen&rsquo;s research was supported by an <a href="https://science.grants.autismspeaks.org/search/grants/identifying-genetic-variants-y-chromosome-males-autism">Autism Speaks Meixner Postdoctoral Fellowship in Translational Research</a>. Read more about Autism Speaks research fellowships <a href="https://www.autismspeaks.org/science/grants-program">here</a>.</div> </div> <div> &nbsp;</div> </div> </div> </div> <p>&nbsp;</p> Science News autism and epigenetics autism causes autism speak gene genomics MSSNG Ryan Yuen Stephen Scherer Study The Hospital for Sick Children Thu, 04 Aug 2016 13:00:38 +0000 311816 at https://www.autismspeaks.org Aug 9 webinar on understanding causes and treatment of autism https://www.autismspeaks.org/science/science-news/aug-9-webinar-understanding-causes-and-treatment-autism <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Autism Speaks-funded researcher Jacqueline Crawley will discuss the development of animal models that advance medicines development.</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/crawley_webinar_thumb.jpg?1469801302" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/crawley_webinar_hero.jpg?1469801309" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">July 29, 2016</span> </div> </div> </div> <div> <h4> <strong><em>Autism Speaks-funded researcher Jacqueline Crawley will discuss the development of animal models that advance medicines development.</em></strong></h4> <div> <a href="https://attendee.gotowebinar.com/register/5478124644257887746"><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/images/zales/crawley_webinar_hero.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></a></div> <div> Neuroscientist Jacqueline Crawley, an Autism Speaks funded researcher, invites the autism community to attend her free webinar &ndash; Autism: Understanding the Causes and Developing Effective Treatments &ndash; on Tuesday, Aug. 9, from 2 to 3 pm Eastern.</div> <div> &nbsp;</div> <div> <div> Dr. Crawley is the Robert E. Chason Endowed Chair in Translational Research at the <a href="http://www.ucdmc.ucdavis.edu/mindinstitute/">University of California-Davis MIND Institute</a> and a professor of psychiatry and behavioral sciences at UC Davis. Her research seeks to understand the causes of autism and explore possible treatments. She uses laboratory mice to evaluate the consequences of autism-linked genetic mutations and the potential benefits of pharmacological interventions.</div> <div> &nbsp;</div> <div> <div> Autism Speaks has funded Dr. Crawley&rsquo;s development of improved animal models of autism with <a href="https://science.grants.autismspeaks.org/search/results.php?newsearch=1&amp;source[]=science&amp;status[]=both&amp;search=Crawley&amp;title[]=&amp;investigator[]=&amp;postal_code[]=&amp;distance=100+miles">two research grants. </a>This work is part of <a href="https://www.autismspeaks.org/science/science-news/autism-speaks-launches-preclinical-autism-consortium-therapeutics">Autism Speaks Preclinical Autism Consortium for Therapeutics (PACT).</a></div> <div> &nbsp;</div> <div> Dr. Crawley&rsquo;s webinar is part of the Brain &amp; Behavior Research Foundation&rsquo;s weekly <a href="https://bbrfoundation.org/meet-the-scientist-august-2016">Meet the Scientist</a> series.&nbsp;</div> </div> <div> <h3 class="rtecenter" style="color:blue;"> <strong><strong><em><a href="https://attendee.gotowebinar.com/register/5478124644257887746">Register for her Aug. 9 webinar here.</a></em></strong></strong></h3> <p class="rtecenter"><strong><strong><em>Can&#39;t make the webinar? Look for it in The Brain &amp; Behavior Research webinar archives <a href="https://bbrfoundation.org/meet-the-scientist-webinar-series#recordings">here</a>.</em></strong></strong></p> </div> <p class="rtecenter"><strong>&nbsp;</strong></p> </div> </div> <p>&nbsp;</p> Science autism Autism Speaks Causes causes of autism Jacqueline Crawley Meet the scientist treatments Webinar Fri, 29 Jul 2016 14:17:49 +0000 311781 at https://www.autismspeaks.org You’re invited: Webchat on remote training to improve autism care https://www.autismspeaks.org/science/science-news/you%E2%80%99re-invited-webchat-remote-training-improve-autism-care <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Autism Science Foundation hosts Aug 3 chat with Autism Speaks ATN pediatrician Kristen Sohl on remote training and consult services for doctors </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Autism Science Foundation hosts Aug 3 chat with Autism Speaks ATN pediatrician Kristen Sohl on remote training and consult services for doctors</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/echo_chat_thumb.jpg?1469466738" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/echo_chat_hero_.jpg?1469466766" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">July 25, 2016</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/live_chat-_kristin_sohl_685.png" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>Did you know that most primary care doctors receive less than a month&rsquo;s training in developmental disorders such as autism?</p> <p>The <a href="http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/what-atn">Autism Speaks Autism Treatment Network</a> (ATN) is evaluating a solution, as part of its federally funded role as the nation&rsquo;s Autism Intervention Network for Physical Health (AIR-P). <a href="https://www.autismspeaks.org/wordpress-tags/echo-autism">ECHO Autism</a> is a live, web-based training and consultation program developed and pilot-tested at the Thompson Center for Autism and Developmental Disabilities (Columbia, Missouri) &ndash; one of 14 ATN sites across the U.S. and Canada. The program is now being rolled out at 10 ATN sites across the United States.</p> <p>On August 3 at 3:30 pm (Eastern), the Autism Science Foundation is hosting a live webchat with Thompson developmental pediatrician Kristin Sohl, whose team developed and evaluated ECHO Autism. Dr. Sohl welcomes questions on how the program can help improve autism-related healthcare in communities that lack autism specialists.</p> <p align="center"><strong>Register to join the Aug. 3 webchat </strong><a href="http://bit.ly/29JVraV"><strong>here</strong></a><strong>.</strong></p> <p align="center"><strong><em>Also see &ldquo;Your ATN@Work: </em></strong><a href="https://www.autismspeaks.org/blog/2016/06/28/distance-training-improves-autism-care-shortens-diagnosis-time"><strong><em>Distance training improves autism care, shortens diagnosis time</em></strong></a></p> Science ATN ATN@Work Autism Treatment Network Your ATN@Work Mon, 25 Jul 2016 17:17:17 +0000 Jessica Sachs 311571 at https://www.autismspeaks.org Interagency Autism Coordinating Committee: Quarterly meeting highlights https://www.autismspeaks.org/science/science-news/interagency-autism-coordinating-committee-quarterly-meeting-highlights <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> National research and policy updates on adult support, interventions for anxiety, inflexible behavior, severe self-injury and more </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>National research and policy updates on adult support, interventions for anxiety, inflexible behavior, severe self-injury and more </p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/iacc_thumb_5.jpg?1469044803" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/iacc_hero_0.jpg?1469052460" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">July 20, 2016</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/iacc_hero.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>At this week&rsquo;s quarterly meeting of the federal Interagency Autism Coordinating Committee (IACC), researchers presented new findings on improving support for college students and adults on the spectrum as well as advances in understanding and treating for autism-related anxiety, severe self-injury and other disabling behaviors. The meeting&rsquo;s public comment period brought impassioned calls for more research on a broad range of concerns.</p> <p>Under the mandate of the <a href="https://iacc.hhs.gov/news/2014/iacc-reauthorized-autism-cares-act.shtml">Autism CARES Act</a>, the IACC coordinates all autism research and service activities within the US Department of Health and Human Services. It is charged with ensuring that a wide range of ideas and perspectives are considered and discussed in a public forum.</p> <p>The meeting highlights below include links to related materials and written remarks. In addition, the IACC will post the archived webcast of the full-day meeting on its <a href="https://iacc.hhs.gov/meetings/multimedia/">multimedia page</a> in the coming days.</p> <p>In opening the meeting, IACC chair <a href="https://iacc.hhs.gov/about-iacc/members/bios/#bruce-cuthbert">Bruce Cuthbert</a> introduced the committee&rsquo;s newest member, <a href="http://www.cdc.gov/ncbddd/aboutus/biographies/shapira.html"><strong>Stuart Shapira</strong></a>. A pediatric geneticist, Dr. Shapira is chief medical officer for the National Center on Birth Defects and Developmental Disabilities at the Center for Disease Control and Prevention (CDC).</p> <p><strong><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/samantha_crane_280_0.jpg" style="padding: 5px; margin-left: 5px; border: 0px; float: right;" title="Samantha Crane" />* </strong><a href="https://iacc.hhs.gov/meetings/iacc-meetings/2016/full-committee-meeting/july19/#samantha-crane"><strong>Samantha Crane</strong></a>, of the Autistic Self Advocacy Network, reported on progress in states developing and implementing policies supporting adults with autism and other developmental disabilities. Ms. Crane directs public policy efforts for the Autistic Self Advocacy Network.</p> <p>She noted that Tennessee is the first state to have met new Medicaid rules for providing effective, personalized services through its community-based programs. &ldquo;Tennessee conducted extensive site assessments, communicated with broad array of stakeholders, partnered with other agencies like managed care organizations and created strong accountability guidelines,&rdquo; she noted. As a result, its community services &ndash; including sheltered workshops &ndash; are required to provide each participant with a personalized plan, with an emphasis on training programs that promote skills, community integration and employment.</p> <p>Ms. Crane also spoke encouragingly about the <a href="https://www.autismspeaks.org/advocacy/advocacy-news/helping-people-disabilities-gain-independence">Transition to Independence Act</a> now before Congress. If passed, it will provide funding to states that create innovative and effective programs to help people with disabilities achieve gain employment and integrate into their communities.</p> <p><strong><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/margaret_miller_280.jpg" style="padding: 5px; margin-left: 5px; border: 0px; float: right;" title="Margaret Miller" />* </strong><a href="https://iacc.hhs.gov/meetings/iacc-meetings/2016/full-committee-meeting/july19/#margaret-miller"><strong>Margaret Miller</strong></a><strong>,</strong> of the Autism Society, said that her organization is developing meaningful milestones and indicators to judge the effectiveness of services that help people with autism transition to adulthood, with a special focus on gain meaningful employment and housing that maximizes independence and community integration.</p> <p><strong><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/pam_feliciano_280.jpg" style="padding: 5px; margin-right: 5px; border: 0px; float: left;" title="Pam Feliciano" />* </strong><a href="https://iacc.hhs.gov/meetings/iacc-meetings/2016/full-committee-meeting/july19/#pamela-feliciano"><strong>Pam Feliciano</strong></a>, of the Simons Foundation, described the organization&rsquo;s newest research initiative &ndash; Simon&rsquo;s Powering Autism Research for Knowledge (SPARK). (See &ldquo;<a href="https://www.autismspeaks.org/science/science-news/simons-launches-nationwide-program-accelerate-autism-research">Simons launches nationwide program to accelerate autism research</a>.&rdquo;)</p> <p><strong><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/anne_roux_280.jpg" style="padding: 5px; margin-left: 5px; border: 0px; float: right;" title="Ann Roux" />* </strong><a href="https://iacc.hhs.gov/meetings/iacc-meetings/2016/full-committee-meeting/july19/#anne-roux"><strong>Anne Roux</strong></a>, of the Drexel Autism Institute, described the institute&rsquo;s new national-indicators report on vocational rehabilitation &ndash; noting that people with autism still have more difficulty finding employment than any other disability group. (See &ldquo;<a href="https://www.autismspeaks.org/news/news-item/drexel-releases-report-vocational-rehabilitation">Drexel Releases Report on Vocational Rehabilitation</a>.&rdquo;)</p> <p><strong><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/edlyn_pena_250.jpg" style="padding: 5px; margin-right: 5px; border: 0px; float: left;" title="Edlyn Peña" />* </strong><a href="https://iacc.hhs.gov/meetings/iacc-meetings/2016/full-committee-meeting/july19/#edlyn-pena"><strong>Edlyn Pe&ntilde;a</strong></a>, of California Lutheran University, described her research study on the supports needed for students with autism to successfully transition to college. Her study involved interviewing parents, as she wasn&rsquo;t able to recruit enough students for the study. Of note, she found that the vast majority of parents were white, had family incomes of $90,000 or more, and had themselves attended college. &ldquo;The findings suggest a pattern of inequitable access to college for students with autism,&rdquo; she said. She called for greater efforts to engage and support parents and students from marginalized backgrounds to provide them with the resources they need to access and succeed in post-secondary education.</p> <p><strong><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/susan_daniels_200.jpg" style="padding: 5px; margin-left: 5px; border: 0px; float: right;" title="Susan Daniels" />*</strong> <a href="https://iacc.hhs.gov/about-oarc/staff/bios/#susan-daniels"><strong>Susan Daniels</strong></a>, director of the U.S. Office of Autism Research Coordination, announced that the IACC had finalized the working groups that will update the committee&rsquo;s strategic plan, with an emphasis on diverse points of view. The working groups will be meeting via conference line by October, with all calls open to the public. Check the IACC website for schedules and details.</p> <p>Dr. Daniels also noted that the strategic plan update remains open for public comment through the end of July. Learn more <a href="https://www.autismspeaks.org/science/science-news/iacc-seeks-public-comment-2016-strategic-plan-autism">here</a>.</p> <p>* <strong>Julianna Rava, </strong>science policy analyst with the U.S. Office for Autism Research Policy, shared the latest breakdown of private and public funding across the seven areas of the IACC strategic plan. <strong>See graphic below.</strong> (Note: Throughout the meeting, committee members and presenters echoed the need to fund more research focused on supporting people with autism across the lifespan.)<br /> <img alt="" border="0" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/iacc_funding.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" title="The U.S. Office of Autism Research Coordination analyzed funding for autism research from private and public sources for 2013. " /></p> <p><strong>Public Comment Period </strong></p> <p>The meeting&rsquo;s regularly scheduled public comment period allowed brief presentations of three minutes each.</p> <h3 align="center" style="color: blue;"> <strong><em><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/public_commenters.png" style="margin-right: auto; margin-left: auto; max-width: 100%; display: block; border-width: 0px; border-style: solid;" title="Participants in the public comment period included parents with a broad range of concerns. See link to their full comments below. " /><br /> Read the full written text of all public-comment presentations </em></strong><a href="https://iacc.hhs.gov/meetings/iacc-meetings/2016/full-committee-meeting/july19/oral_public_comments_071916.pdf"><strong><em>here</em></strong></a><strong><em>.</em></strong></h3> <p>Several parents urged more research investigating vaccination and hypoxia (oxygen deprivation) as contributing to autism. Other parents urged improved autism training for general education teachers and greater support for <a href="https://www.iidc.indiana.edu/pages/An-Introduction-to-Possible-Biomedical-Causes-and-Treatments-for-Autism-Spectrum-Disorders">biomedical interventions</a>. A music therapist urged expanded recognition of the benefits of music therapy for improving socialization, language and learning among children with autism. An early intervention provider who was also the parent of a child with autism described the dramatic social and behavioral improvements seen after she and other parents removed all electronic media from their homes. A representative of Madison House Autism Association called for greater research and support for adults who have autism.</p> <p><strong>Panel on challenging behaviors</strong><br /> An afternoon panel featured overviews of research on better understanding and addressing severe behavioral challenges associated with autism. (See references and materials for this panel below.)</p> <p><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/denis_sukhodolsky_240.jpg" style="padding: 5px; margin-left: 5px; border: 0px; float: right;" title="Denis Sukhodolsky" />* <a href="https://iacc.hhs.gov/meetings/iacc-meetings/2016/full-committee-meeting/july19/#denis-sukhodolsky"><strong>Denis Sukhodolsky</strong></a><strong>, </strong>of Yale Child Study Center, described advances in addressing severe anxiety and irritability in children and adolescents with autism. Cognitive behavioral therapy, in particular, is helping many people whose autism is complicated by severe anxiety, he said. The approach involves highly structured methods for exposing people to their fears in ways that feel safe. While generally effective, the method does not work for all children or adults who have autism. He emphasized the importance of developing new, effective approaches to help these people with their debilitating fears.</p> <p>In children and adults with autism, severe irritability &ndash; including tantrums, aggression and self-injury &ndash; often results from interrupting restricted interests and the inability to communicate. He described success with individualized therapy that seeks to understand the underlying frustrations and negotiate compromises.</p> <p>He expressed hope that new early interventions can prevent the development of severe irritability &ndash; which tends to worsen with age and become particularly problematic in adolescence and adulthood.</p> <p><strong><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/bodfish_240.jpg" style="padding: 5px; margin-right: 5px; border: 0px; float: left;" title="James Bodfish" />* </strong><a href="https://iacc.hhs.gov/meetings/iacc-meetings/2016/full-committee-meeting/july19/#james-bodfish"><strong>James Bodfish</strong></a>, of Vanderbilt University School of Medicine, described his team&rsquo;s research developing family-based early interventions to reduce or prevent the development of severely restricted interests and behaviors that interfere with quality of life. Dr. Bodfish noted that this work included the research of Autism Speaks Weatherstone Fellow <a href="https://science.grants.autismspeaks.org/search/grants/nonsocial-interests-and-reward-processing-autism-spectrum-disorders">Kathryn Unruh</a>, who is investigating nonsocial interests and motivations in toddlers affected by autism with the goal of tapping these interests to improve social learning and development.</p> <p><strong><img align="right" alt="" border="0" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/frank_symons_240.jpg" style="padding:5px;margin-left: 5px; border: 0px;" title="Frank Symons" />* </strong><a href="https://iacc.hhs.gov/meetings/iacc-meetings/2016/full-committee-meeting/july19/#frank-symons"><strong>Frank Symons</strong></a>, of the University of Minnesota, described his research into severe self-injury associated with developmental disorders, including autism. Parents are understandably desperate for help, he noted. But after three decades of research, we still have little understanding of what drives the behaviors and whether or not they involve increased or decreased pain perception. His current research focuses on identifying red flags that suggest a young child is predisposed to self-injury, which tends to worsen with age. Such warning signs could signal an opportunity to intervene in ways that prevent or decrease such behaviors. At present, little is known on how to accomplish this.</p> <p><strong>The next full meeting of the IACC is scheduled for October 26</strong>. &nbsp;</p> <h4 align="center" style="color: blue;"> <strong><em>The IACC will post the archived webcast of the July 19 meeting on its </em></strong><a href="https://iacc.hhs.gov/meetings/multimedia/"><strong><em>multimedia page</em></strong></a><strong><em> in the coming days</em></strong><strong>.</strong></h4> <h4 align="center" style="color: blue;"> <strong><em>Did you know that the IACC is updating its strategic priorities and wants input from the autism community by July 29?<br /> Learn more </em></strong><a href="https://www.autismspeaks.org/science/science-news/iacc-seeks-public-comment-2016-strategic-plan-autism"><em>here</em></a><strong><em>.</em></strong></h4> <p><strong>Additional reporting by Autism Speaks advocacy interns Jaime Travers-Fein and Maxamillia Moroni.&nbsp; </strong></p> <h4 style="color: blue;"> <strong>Materials related to panel on challenging behavior</strong></h4> <p>Anderson, C.&nbsp;<a href="http://www.iancommunity.org/cs/simons_simplex_community/aggression_and_asd" target="_blank" title="New Research on Children with ASD and Aggression">New Research on Children with ASD and Aggression</a>&nbsp; (Internet) Interactive Autism Network. Feb. 2012</p> <p>Boyd BA, McDonough SG, Bodfish JW.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/21584849" target="_blank" title="Evidence-based behavioral interventions for repetitive behaviors in autism">Evidence-based behavioral interventions for repetitive behaviors in autism</a>&nbsp; J Autism Dev Disord. 2012 Jun;42(6):1236-48.</p> <p>Duerden EG, Oatley HK, Mak-Fan KM, McGrath PA, Taylor MJ, Szatmari P, Roberts SW.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/22422338" target="_blank" title="Risk factors associated with self-injurious behaviors in children and adolescents with autism spectrum disorders">Risk factors associated with self-injurious behaviors in children and adolescents with autism spectrum disorders</a>&nbsp; J Autism Dev Disord. 2012 Nov;42(11):2460-70.</p> <p>Fitzpatrick SE, Srivorakiat L, Wink LK, Pedapati EV, Erickson CA.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/27382295" target="_blank" title="Aggression in autism spectrum disorder: presentation and treatment options">Aggression in autism spectrum disorder: presentation and treatment options.</a>&nbsp; Neuropsychiatr Dis Treat. 2016 Jun 23;12:1525-38.</p> <p>Fung LK, Mahajan R, Nozzolillo A, Bernal P, Krasner A, Jo B, Coury D, Whitaker A, Veenstra-Vanderweele J, Hardan AY.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/26908468" target="_blank" title="Pharmacologic Treatment of Severe Irritability and Problem Behaviors in Autism: A Systematic Review and Meta-analysis">Pharmacologic Treatment of Severe Irritability and Problem Behaviors in Autism: A Systematic Review and Meta-analysis.</a>&nbsp; Pediatrics. 2016 Feb;137 Suppl 2:S124-35.</p> <p>McGuire K, Fung LK, Hagopian L, Vasa RA, Mahajan R, Bernal P, Silberman AE, Wolfe A, Coury DL, Hardan AY, Veenstra-VanderWeele J, Whitaker AH.<a href="http://www.ncbi.nlm.nih.gov/pubmed/26908469" target="_blank" title="Irritability and Problem Behavior in Autism Spectrum Disorder: A Practice Pathway for Pediatric Primary Care. ">Irritability and Problem Behavior in Autism Spectrum Disorder: A Practice Pathway for Pediatric Primary Care.&nbsp;</a>&nbsp; &bull; Pediatrics. 2016 Feb;137 Suppl 2:S136-48. doi: 10.1542/peds.2015-2851L. Epub 2016 Feb 1.</p> <p>Minshawi NF, Hurwitz S, Fodstad JC, Biebl S, Morriss DH, McDougle CJ.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/24748827" target="_blank" title="The association between self-injurious behaviors and autism spectrum disorders.">The association between self-injurious behaviors and autism spectrum disorders.</a>&nbsp; Psychol Res Behav Manag. 2014 Apr 12;7:125-36.</p> <p>Moskowitz, L.&nbsp;<a href="https://www.autism.com/treating_tips" target="_blank" title="Assessing and Treating Challenging Behavior in Individuals with ASD ">Assessing and Treating Challenging Behavior in Individuals with ASD&nbsp;</a>&nbsp; Tantrumming and Aggression. Autism Research Institute, n.d.</p> <p>Richards C, Moss J, Nelson L, Oliver C.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/27158272" target="_blank" title="Persistence of self-injurious behaviour in autism spectrum disorder over 3&nbsp;years: a prospective cohort study of risk markers.">Persistence of self-injurious behaviour in autism spectrum disorder over 3&nbsp;years: a prospective cohort study of risk markers.</a>&nbsp; J Neurodev Disord. 2016 May 5;8:21.</p> <p>Sukhodolsky DG, Smith SD, McCauley SA, Ibrahim K, Piasecka JB.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/26745682" target="_blank" title="Behavioral Interventions for Anger, Irritability, and Aggression in Children and Adolescents.">Behavioral Interventions for Anger, Irritability, and Aggression in Children and Adolescents.</a>&nbsp; J Child Adolesc Psychopharmacol. 2016 Feb;26(1):58-64.</p> <p>Sukhodolsky DG, Vander Wyk BC, Eilbott JA, McCauley SA, Ibrahim K, Crowley MJ, Pelphrey KA.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/26784537" target="_blank" title="Neural Mechanisms of Cognitive-Behavioral Therapy for Aggression in Children and Adolescents: Design of a Randomized Controlled Trial Within the National Institute for Mental Health Research Domain Criteria Construct of Frustrative Non-Reward">Neural Mechanisms of Cognitive-Behavioral Therapy for Aggression in Children and Adolescents: Design of a Randomized Controlled Trial Within the National Institute for Mental Health Research Domain Criteria Construct of Frustrative Non-Reward</a>&nbsp; J Child Adolesc Psychopharmacol. 2016 Feb;26(1):38-48.</p> <p>Sukhodolsky DG, Bloch MH, Panza KE, Reichow B.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/24167175" target="_blank" title="Cognitive-behavioral therapy for anxiety in children with high-functioning autism: a meta-analysis. ">Cognitive-behavioral therapy for anxiety in children with high-functioning autism: a meta-analysis.&nbsp;</a>&nbsp; Pediatrics. 2013 Nov;132(5):e1341-50.</p> <p>Symons FJ, Gilles E, Tervo R, Wendelschafer-Crabb G, Panoutsopoulou I, Kennedy W.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/25185892" target="_blank" title="Skin a and self-injury: a possible link between peripheral innervation and immune function?">Skin a and self-injury: a possible link between peripheral innervation and immune function?</a>&nbsp; Dev Med Child Neurol. 2014 Sep 4.</p> <p>Symons FJ, Tervo RC, Barney CC, Damerow J, Selim M, McAdams B, Foster S, WendelschaferCrabb G, Kennedy W.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/25918119" target="_blank" title="Peripheral Innervation in Children With Global Developmental Delay: Biomarker for Risk for Self-Injurious Behavior?">Peripheral Innervation in Children With Global Developmental Delay: Biomarker for Risk for Self-Injurious Behavior?</a>&nbsp; J Child Neurol. 2015 Nov;30(13):1722-7.</p> <p>Wolff JJ, Bodfish JW, Hazlett HC, Lightbody AA, Reiss AL, Piven J.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/23200289" target="_blank" title="Evidence of a distinct behavioral phenotype in young boys with fragile X syndrome and autism.">Evidence of a distinct behavioral phenotype in young boys with fragile X syndrome and autism.</a>&nbsp; J Am Acad Child Adolesc Psychiatry. 2012 Dec;51(12):1324-32.</p> <p>Wolff JJ, Clary J, Harper VN, Bodfish JW, Symons FJ.&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/22716264" target="_blank" title="Evidence for reciprocal interaction effects among adults with self-injury and their caregivers">Evidence for reciprocal interaction effects among adults with self-injury and their caregivers.</a>&nbsp; Am J Intellect Dev Disabil. 2012 May;117(3):225-32.</p> <p><a href="https://www.autismspeaks.org/family-services/tool-kits/challenging-behaviors-tool-kit" target="_blank" title="Challenging Behaviors Tool Kit">Challenging Behaviors Tool Kit.</a>&nbsp; Autism Speaks: Family Services. Challenging Behavior Toolkit, 2012</p> <p>&nbsp;</p> Advocacy Science adult transition services Adults autism research funding priorities for autism research IACC Interagency Autism Coordinating Committee School Age Transition Age young children Wed, 20 Jul 2016 20:08:41 +0000 Jessica Sachs 311461 at https://www.autismspeaks.org Agenda for July 19 meeting of Interagency Autism Coordinating Committee https://www.autismspeaks.org/science/science-news/agenda-july-19-meeting-interagency-autism-coordinating-committee <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Attend in person or by webcast; check back for coverage as IACC addresses national priorities in autism research and services </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Attend in person or by webcast; check back for coverage as IACC addresses national priorities in autism research and services</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/iacc_meeting_hero_thumb_1.jpg?1468599109" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/iacc_meeting_hero_1_2.jpg?1468599133" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">July 18, 2016</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/images/features/iacc_meeting_hero_1.jpg?1447945748" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /><br /> The federal Interagency Autism Coordinating Committee (IACC) has posted the <a href="https://iacc.hhs.gov/meetings/iacc-meetings/2016/full-committee-meeting/july19/#agenda">full agenda</a> (see below) the quarterly meeting on Tuesday, July 19, from 9 to 5 Eastern, at the National Institutes of Health, in Bethesda, Maryland.</p> <p>Under the mandate of the <a href="https://iacc.hhs.gov/news/2014/iacc-reauthorized-autism-cares-act.shtml">Autism CARES Act</a>, the IACC coordinates all autism research and service activities within the US Department of Health and Human Services. The law requires the committee to consider and discuss a wide range of ideas and perspectives in a public forum.</p> <h4 align="center" style="color: blue;"> <strong>Register to attend in person </strong><a href="http://apps1.seiservices.com/iacc/"><strong>here</strong></a><strong>. </strong></h4> <h4 align="center" style="color: blue;"> <strong>Join remotely by live webcast or conference call </strong><a href="https://videocast.nih.gov/summary.asp?live=19333&amp;bhcp=1"><strong>here</strong></a><strong>.</strong></h4> <p>For more information, also visit the <a href="https://iacc.hhs.gov/meetings/" target="_blank">IACC Events</a> page, and check back for coverage of the meeting on autismspeaks.org.</p> <h4 align="center" style="color: blue;"> <strong><em>Did you know that the IACC is updating its strategic priorities and wants input from the autism community by July 29?<br /> Learn more </em></strong><a href="https://www.autismspeaks.org/science/science-news/iacc-seeks-public-comment-2016-strategic-plan-autism"><strong><em>here</em></strong></a><strong><em>.</em></strong></h4> <p><strong><em><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/iacc_agenda_1.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></em></strong></p> <p><strong><em><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/iacc_agenda_2.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></em></strong></p> <p><strong><em><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/iacc_agenda_3.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></em></strong></p> Advocacy Science autism policy autism research IACC Interagency Autism Coordinating Committee public comment Mon, 18 Jul 2016 13:01:57 +0000 Jessica Sachs 311331 at https://www.autismspeaks.org State insurance mandates increase access to affordable autism care https://www.autismspeaks.org/science/science-news/state-insurance-mandates-increase-access-affordable-autism-care <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Autism Speaks issues statement in response to positive findings and need to overcome remaining barriers to care </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Autism Speaks issues statement in response to positive findings and need to overcome remaining barriers to care</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/insurance_state_map_thumb_0.jpg?1468272845" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/insurance_state_map_hero_0.jpg?1468272849" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">July 11, 2016</span> </div> </div> </div> <p><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/mapgif_may2016.gif " style="margin-right: auto; margin-left: auto; max-width: 100%; display: block; border-width: 0px; border-style: solid;" title="Autism Speaks has been instrumental in advancing legislation that has delivered meaningful insurance coverage for autism-related healthcare law in 44 states." /></p> <p>State mandates requiring commercial health plans to cover the cost of services for children with autism have resulted in more children being diagnosed and treated for the disorder, according to <a href="https://archpedi.jamanetwork.com/article.aspx?articleid=2532586">research published this week</a> in the journal <a href="https://archpedi.jamanetwork.com/journal.aspx"><em>JAMA Pediatrics</em></a>. Until recently, most health insurance plans did not cover the high costs associated with such care.</p> <p>In addition, the researchers noted that the number of children diagnosed and receiving therapy for autism increased the longer a state mandate was in effect &ndash; from a 10 percent increase the first year to more than 18 percent after three years. However, the number of children diagnosed and receiving care remained far below the estimated prevalence of autism in the United States, the study found, suggesting that many families lack access to affordable autism services for their children. &nbsp;</p> <h4 style="color: blue;"> <strong>Autism Speaks issued a statement in response to these findings: </strong></h4> <p><em>This study reinforces Autism Speaks&rsquo; long-standing position that autism insurance mandates are a critical tool to ensure every individual receives the evidence-based health care for autism they deserve. Autism Speaks is pleased the laws the community has worked so hard to get passed have increased the detection and treatment of autism. We have committed significant resources to enact, implement and enforce policies that ensure every autism family has access to the health care they need. </em></p> <p><em>As noted by the study&rsquo;s authors, barriers that impede access to care continue to exist, and regulatory issues remain. As we work with autism families around the country, we regularly see situations in which willing providers are unable to join networks; the credentialing process takes half-a-year to complete; reimbursement rates are set at unreasonably low levels; and discriminatory restrictions spring up regarding time and location of services, parental involvement, and more. We will continue our work with families and regulators to address these issues.</em></p> <p><strong>For more on this research, also see:<br /> <a href="https://www.autismspeaks.org/science/science-news/study-suggests-insurance-mandates-help-close-gaps-autism-care">Study suggests insurance mandates help close gaps in autism care</a></strong></p> <p><strong><img align="left" alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/mandell.jpg " style="padding:5px;margin-right: 5px; border: 0px;" />Read about Dr. Mandell&rsquo;s Autism Speaks-funded research<br /> on the economics of autism&nbsp;<a href="https://www.autismspeaks.org/site-wide/david-mandell">here</a>.</strong></p> Advocacy Science Advocacy autism insurance reform Autism Votes insurance mandates Mon, 11 Jul 2016 21:33:08 +0000 Jessica Sachs 311221 at https://www.autismspeaks.org Interagency Autism Coordinating Committee to meet July 19 https://www.autismspeaks.org/science/science-news/interagency-autism-coordinating-committee-meet-july-19 <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Learn how you can participate; check back for updates and coverage as IACC addresses national priorities in autism research and services </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Learn how you can participate; check back for updates and coverage as IACC addresses national priorities in autism research and services</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/iacc_meeting_hero_thumb_0.jpg?1466525381" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/iacc_meeting_hero_1_1.jpg?1466525416" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">June 22, 2016</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/images/features/iacc_meeting_hero_1.jpg?1447945748" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>The federal Interagency Autism Coordinating Committee (IACC) invites the autism community to participate in its next quarterly meeting &ndash; Tuesday, July 19, from 9 to 5 Eastern at the National Institutes of Health, in Bethesda, Maryland.</p> <p>Under the mandate of the <a href="https://iacc.hhs.gov/news/2014/iacc-reauthorized-autism-cares-act.shtml">Autism CARES Act</a>, the IACC coordinates all autism research and service activities within the US Department of Health and Human Services. It is charged with ensuring that a wide range of ideas and perspectives are considered and discussed in a public forum.</p> <h4 align="center" style="color: blue;"> <strong><em>Did you know that the IACC is updating its strategic priorities and wants input from the autism community by July 29?<br /> Learn more </em></strong><a href="https://www.autismspeaks.org/science/science-news/iacc-seeks-public-comment-2016-strategic-plan-autism"><strong><em>here</em></strong></a><strong><em>.</em></strong></h4> <p>Interested in presenting comments at the July meeting or sending written comments on an issue important to you? Send them to <a href="mailto:iaccpublicinquiries@mail.nih.gov">iaccpublicinquiries@mail.nih.gov</a>. Deadline to request to present in-person comments is 5 pm ET July 5, with submission of an associated written statement by 5 pm July 11. Submission of written comments for distribution to IACC members is 5 pm July 11.</p> <p>Autism Speaks will post the meeting agenda on its website when it becomes available &ndash; typically a week before the meeting. For more information, also visit the <a href="https://iacc.hhs.gov/meetings/" target="_blank">IACC Events</a> page.</p> <h4 align="center" style="color: blue;"> <strong>Pre-register to attend the July 19 meeting </strong><a href="http://apps1.seiservices.com/iacc/"><strong>here</strong></a><strong>. </strong></h4> <h4 align="center" style="color: blue;"> <strong>Join remotely by live webcast or conference call </strong><a href="https://videocast.nih.gov/summary.asp?live=19333&amp;bhcp=1"><strong>here</strong></a><strong>.</strong></h4> <p><strong><em>View past IACC meetings and their agenda&rsquo;s </em><a href="https://iacc.hhs.gov/meetings/iacc-meetings/archives/"><em>here.</em></a></strong></p> <p><strong><em>View Autism Speaks coverage of recent IACC meetings </em><a href="https://www.autismspeaks.org/site-wide/iacc"><em>here</em></a></strong><strong><em>.&nbsp;</em></strong></p> Advocacy Science IACC Interagency Autism Coordinating Committee Wed, 22 Jun 2016 16:11:43 +0000 Jessica Sachs 310421 at https://www.autismspeaks.org IACC seeks public comment on 2016 strategic plan on autism https://www.autismspeaks.org/science/science-news/iacc-seeks-public-comment-2016-strategic-plan-autism <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Autism Speaks CEO Angela Geiger urges autism community to make their voices heard to shape national priorities for autism research, policies and services </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Autism Speaks CEO Angela Geiger urges autism community to make their voices heard on national priorities for autism research, policies and services </p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/iacc_meeting_hero_thumb.jpg?1466019492" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/iacc_meeting_hero_1_0.jpg?1466019394" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">June 22, 2016</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/images/features/iacc_meeting_hero_1.jpg?1447945748 " style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>The <a href="https://iacc.hhs.gov/">Interagency Autism Coordinating Committee (IACC)</a> invites the autism community to help identify priorities for its 2016 update to <a href="https://iacc.hhs.gov/publications/strategic-plan/2013/"><em>The IACC Strategic Plan for Autism Spectrum Disorder</em></a><em>. </em></p> <p><img align="right" alt="" border="0" src="https://iacc.hhs.gov/images/publications/pub-sp2013-lg.jpg " style="padding:5px;margin-left: 5px; border: 0px;" />The update will cover research, services and policy issues related to the seven questions outlined in previous IACC strategic plans, last updated in 2013.</p> <p>These topics include:</p> <p>* When Should I Be Concerned?</p> <p>* How Can I Understand What Is Happening?</p> <p>* What Caused This to Happen and Can It Be Prevented?</p> <p>* Which Treatments and Interventions Will Help?</p> <p>* Where Can I Turn for Services?</p> <p>* What Does the Future Hold, Particularly for Adults?</p> <p>* What Other Infrastructure and Surveillance Needs Must Be Met?</p> <p>&ldquo;This is a unique opportunity for our community to help shape funding priorities at the national level,&rdquo; says Angela Geiger, president and CEO of Autism Speaks. &ldquo;We ask for people with autism, families and stakeholders to reach out and allow their voices to be heard to ensure that the strategic plan represents the concerns and needs of every individual on the spectrum.&rdquo;</p> <h3 align="center" style="color:blue;"> <strong>The comment period will remain open through July 29, 2016.</strong></h3> <h3 align="center" style="color:blue;"> <strong>Click </strong><a href="https://iacc.hhs.gov/meetings/public-comments/requests-for-information/2016/strategic-plan.shtml"><strong>here</strong></a><strong> to submit your comments.</strong></h3> Advocacy Science autism research IACC IACC Strategic Plan for Autism Interagency Autism Coordinating Committee Wed, 22 Jun 2016 09:40:17 +0000 Jessica Sachs 310226 at https://www.autismspeaks.org INSAR Summer Institute: Free online seminars on familial aspects of autism https://www.autismspeaks.org/science/science-news/insar-summer-institute-free-online-seminars-familial-aspects-autism <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> The International Society for Autism Research reprises its popular summer webinars – this year on autism and the family </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>The International Society for Autism Research reprises its popular summer webinars – this year on autism and the family</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/insar_summer_thumb.jpg?1464792794" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/insar_summer_685.jpg?1464792802" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">June 02, 2016</span> </div> </div> </div> <p><img alt="" border="0" src="https://pbs.twimg.com/media/CE_S6EeUkAIonAT.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>The <strong>International Society for Autism Research (INSAR)</strong> is hosting a free series&nbsp;of six weekly online seminars on research into the familial aspects of autism.</p> <p>The INSAR Summer Institute 2016 will run Thursdays from June 23 to July 28 (times vary) and will cover topics including family risk factors, parent-led interventions, autism in adulthood and autism symptoms in siblings who don&rsquo;t meet the full criteria for an autism diagnosis.</p> <p>The presentations are&nbsp;geared for students, post-doctoral fellows and other early career investigators interested in autism research. Clinicians and established researchers can benefit from overviews of topics outside their expertise. The public &ndash; including families affected by autism &ndash; are likewise welcome&nbsp;</p> <p><strong>Sessions offered:&nbsp;</strong></p> <p>June 23, 3 pm Eastern: Anthony Bailey &ndash; Familial Risk Factors and Comorbidities&nbsp;</p> <p>June 30, 2 pm Eastern: Joseph Piven &ndash; Infant Siblings of Children with ASD&nbsp;</p> <p>July 7, 1 pm Eastern: Connie Kasari &ndash; Parent and Family-Led Interventions&nbsp;</p> <p>July 14, 11 am: William Mandy &ndash; Sex Differences in ASD&nbsp;</p> <p>July 21, 7 pm: Patricia Howlin &ndash; ASD in Adulthood</p> <p>July 28, 10 am: John Constantino: The Broader Autism Phenotype&nbsp;</p> <h4 align="center" style="color: blue;"> <em><strong>Registration&nbsp;is free and available worldwide. </strong></em><br /> Visit the <a href="http://www.autism-insar.org/research-opportunities/summer-institute2016"><strong>INSAR website</strong></a> for program details and free registration for a <strong><em>myINSAR</em></strong>&nbsp;account. (INSAR membership not&nbsp;required)</h4> Science autism and the family autism research familial aspects of autism family risk factors for autism INSAR INSAR Summer Institute International Society for Autism Research sex differences in autism Thu, 02 Jun 2016 14:54:47 +0000 Jessica Sachs 309696 at https://www.autismspeaks.org Developing medicines for autism: Insights from tuberous sclerosis https://www.autismspeaks.org/science/science-news/developing-medicines-autism-insights-tuberous-sclerosis <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Mustafa Sahin discusses how fine-tuning clinical trials of tuberous sclerosis drugs can advance broader development of autism medicines </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Mustafa Sahin discusses how fine-tuning clinical trials of tuberous sclerosis drugs can advance broader development of autism medicines </p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/sahin_imfar_thumb.jpg?1463140261" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/sahin_imfar_hero.jpg?1463140273" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">May 14, 2016</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/sahin_imfar_hero.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>Today at the International Meeting for Autism Research (IMFAR), Harvard neurologist Mustafa Sahin discussed how clinical trials of experimental medicines for tuberous sclerosis have a unique potential for advancing treatments for many types of autism.</p> <h4 align="center" style="color: red;"> <strong><img alt="" border="0" src="http://ww1.prweb.com/prfiles/2014/05/13/11851382/gI_82237_IMFAR.png" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /><br /> Read all our coverage of IMFAR 2016 here.</strong></h4> <p>Tuberous sclerosis complex (TSC) is a rare genetic disorder that involves the early growth of non-cancerous tumors in the brain and body. Around half of children diagnosed with TSC go on to develop autism.</p> <p>Dr. Sahin and his research team recently concluded a <a href="http://www.accordclinical.com/clinical-study/types-of-clinical-trials/phase-ii-clinical-trials/">phase II clinical trial</a> testing the ability of the anti-tumor drug everolimus to improve cognition and reduce symptoms of autism, epilepsy and disturbed sleep in children with TSC. <a href="https://science.grants.autismspeaks.org/search/grants/randomized-phase-2-trial-rad001-an-mtor-inhibitor-patients-with-tuberous-sclerosis-complex">A research grant from Autism Speaks</a> helped fund the study, alongside support from the <a href="http://www.tsalliance.org/">Tuberous Sclerosis Alliance</a> and the healthcare company Novartis.</p> <p>In <a href="http://bit.ly/1UztOkz">news reports</a> over the last three years, several families reported dramatic improvements in some of the 47 children with TSC and autism who participated in the study. Dr. Sahin cautions, however, that his team has only recently unmasked which children received the actual medicine and which received a look-alike dummy pill. Only now can they begin analyzing whether the medicine is associated with significant improvements in cognition and symptoms.</p> <p>&ldquo;It&rsquo;s so important to do <a href="http://www.thefreedictionary.com/double-blind+study">double-blinded</a> studies like this,&rdquo; he explains, &ldquo;because we know that <a href="http://medical-dictionary.thefreedictionary.com/open-label+trial">open-label trials</a> give us higher rates of optimistic results that can&rsquo;t always be replicated.&rdquo; In other words, blinding a trial helps researchers factor out the positive effect of expectations &ndash; both theirs and those of participating families.</p> <p>At IMFAR this week, Dr. Sahin was able to report that the children in the study experienced very low rates of possible side effects &ndash; an important indicator that everolimus is safe and well tolerated.</p> <p><strong>Gaining new insights from clinical studies</strong><br /> At the heart of Dr. Sahin&rsquo;s IMFAR presentation were his recommendations for improving future clinical testing of everolimus and other experimental medicines for autism.</p> <p>In particular, he recommended the use of brain imaging (MRI) and high-tech analysis of electroencephalography (EEG) to track how experimental treatments change physical brain structures. In his research with tuberous sclerosis, for example, such methods would allow researchers to track changes in the altered brain connections frequently seen with tuberous sclerosis and some other types of autism.</p> <p>Such brain-structure changes may prove to be important indicators of when a treatment is helping or is likely to help someone who has tuberous sclerosis and/or autism. &ldquo;Our goal is to identify whether there are other subtypes of autism that involve alterations to the same pathways &ndash; and so may also benefit from the same treatments,&rdquo; Dr. Sahin says.</p> <p>Indeed, one of the major unanswered questions in autism research is <em>which</em> brain regions and <em>which</em> types of brain cells are involved in the condition, experts agree. Brain imaging and EEG analysis promise to provide important insights in this area, Dr. Sahin suggests.</p> <p>In recent years, he notes, whole genome sequencing has associated autism with upwards of a thousand different genetic changes. This has fostered interest in finding whether some or many of these different gene changes affect common brain pathways &ndash; and so, may respond to the same or similar treatments.</p> <p>Ensuring that each clinical trial builds on the last one is the best way to advance the development of autism medicines, Dr. Sahin concludes. &ldquo;We will likely go through this circle of discovery several times to come up with safest and most effective medications for tuberous sclerosis and other forms of autism. It will take a number of trials, each one giving us better and better results as we go forward.&rdquo;</p> <p>Dr. Sahin also credited studies in animal models of autism for contributing to &ldquo;crucial insights into how to develop better therapies.&rdquo; By way of example, he noted that <a href="http://bit.ly/24y1NQH">Autism Speaks Preclinical Autism Consortium for Therapeutics</a> (PACT) is supporting the improvement of animal models and other tools for early testing of promising medicines.</p> <p>In closing, Dr. Sahin expressed confidence that within the next decade, basic research and clinical trials will together deliver an effective medicine to ease the core symptoms of at least some types of autism.</p> <h4 align="center" style="color: blue;"> <strong>Read Dr. Sahin&rsquo;s IMFAR abstract &ndash; &ldquo;Clinical Investigations in TSC&rdquo; &ndash; here.</strong></h4> <h4 align="center" style="color: blue;"> <strong>For more on Dr. Sahin&rsquo;s research, also see<br /> &ldquo;</strong><a href="https://www.autismspeaks.org/science/science-news/progress-report-precision-therapies-autism"><strong>Progress report on precision therapies for autism</strong></a><strong>.&rdquo;</strong></h4> <h3 align="center" style="color:red;"> <strong>Photos from IMFAR 2016 below.</strong></h3> <p></p> <div class="media_embed"> <div height="" id="cp_widget_666a13cd-63e4-4684-bdb2-7c0d83c88207" width=""> <strong>...</strong></div> <p> <strong height="" width=""></strong></p> <script height="" type="text/javascript" width=""> var cpo = []; cpo["_object"] ="cp_widget_666a13cd-63e4-4684-bdb2-7c0d83c88207"; cpo["_fid"] = "AYJAYeN__i06"; var _cpmp = _cpmp || []; _cpmp.push(cpo); (function() { var cp = document.createElement("script"); cp.type = "text/javascript"; cp.async = true; cp.src = "//www.cincopa.com/media-platform/runtime/libasync.js"; var c = document.getElementsByTagName("script")[0]; c.parentNode.insertBefore(cp, c); })(); </script><p><noscript height="" width="">Powered by Cincopa &lt;a href=&#39;http://www.cincopa.com/video-hosting&#39;&gt;Video Hosting Platform&lt;/a&gt; for Business solution.&lt;span&gt;Autism Speaks at IMFAR 2016&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Duke University child psychologist Geraldine Dawson, president of INSAR, welcomed more than 2,000 attendees to IMFAR 2016, saying &ldquo;there&rsquo;s nothing like this &ndash; people coming together from around the world to discuss autism research findings and exchange ideas.&rdquo;&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 600&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 800&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;James Bodfish of Vanderbuilt University addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 96&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 8&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285808&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615700&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:51:44 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 480&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 640&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;M. Daniele Fallin of Johns Hopkins University addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 122&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285794&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615294&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:23:18 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Rene Gardner of Karolinska Institutet addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 98&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285767&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615281&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:39:01 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;David Mandell of University of Pennsylvania addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 108&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285708&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615325&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:45:20 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Stewart Motstofsky, Kennedy Krieger Institute, IMFAR Scientific Program co-chair addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 119&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285794&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615294&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:18:52 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;IMFAR opening press conference panel.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 137&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285519&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615311&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 1&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:11:48 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Alison Singer of Autism Science Foundation and IMFAR PR committee chair addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 128&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 14&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285697&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615478&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:09:59 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Dr. Geraldine Dawson, Duke University, INSAR president welcomes the media at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 78&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285561&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615333&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:13:46 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Jason Wolff of University of Minnesota addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 117&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285750&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615228&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:30:11 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;At the annual meeting of the Autism Speaks Toddler Treatment Network at IMFAR, Angela Lellox discussed how government policy and appropriations affect access to early intervention services. Ms. Lello is Autism Speaks&rsquo; senior director of public policy.&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2560&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 1440&lt;/span&gt;</noscript></p></div> <p></p> <p>&nbsp;</p> Science autism autism research Autism Speaks Autism Spectrum IMFAR 2016 medicines development Mustafa Sahin tuberous sclerosis Sat, 14 May 2016 12:00:38 +0000 Jessica Sachs 308846 at https://www.autismspeaks.org MRI tracks treatment success in adult mouse model of autism https://www.autismspeaks.org/science/science-news/mri-tracks-treatment-success-adult-mouse-model-autism <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Autism Speaks fellow uses brain scan to show how gene activation reverses volume loss in parts of the brain affected by Rett syndrome, a genetic condition that usually includes autism </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Autism Speaks fellow uses brain scan to show how gene activation reverses volume loss in parts of the brain affected by Rett syndrome, a genetic condition that usually includes autism</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/mouse_mri_thumb_0.jpg?1463150785" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/mouse_mri_685.jpg?1463150212" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">May 13, 2016</span> </div> </div> </div> <p><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/mouse_mri_685.jpg" style="margin-right: auto; margin-left: auto; max-width: 100%; display: block; border-width: 0px; border-style: solid;" title="Autism Speaks Weatherstone Fellow Rylan Allemang-Grand places a sedated mouse into mouse-sized MRI chamber for brain scanning. His research is advancing the development of noninvasive methods for tracking treatment response in future trials of gene therapy for Rett syndrome, a condition that usually includes autism. Photo by Jacob Ellegood." /></p> <p>Today at the <a href="https://www.autismspeaks.org/science/science-news/imfar-2016">International Meeting for Autism Research</a> (IMFAR), Autism Speaks Weatherstone Fellow Rylan Allemang-Grand described how magnetic resonance imaging (MRI) could be used to track treatment response to gene therapy in future clinical trials for Rett syndrome.</p> <p align="center"><strong>Mr. Allemang-Grand is pursuing his Autism Speaks research project &ndash;<br /> &ldquo;</strong><a href="http://bit.ly/1QWGWta"><strong>Monitoring treatment-induced neuranatomic changes in a mouse model of Rett syndrome</strong></a><strong>&rdquo;</strong><strong> &ndash; at Toronto&rsquo;s Hospital for Sick Children.</strong></p> <p>Rett syndrome affects primarily girls and produces a progressive and debilitating form of autism that includes loss of language and motor control as well as profound medical problems. Its symptoms stem from a defective copy of a gene called Mecp2. Mecp2 is known as a &ldquo;master gene&rdquo; because it regulates the activity of many other genes vital to development and health.</p> <p>Because a defective Mecp2 gene has such broad effects, many experts agree that <a href="http://1.usa.gov/1QWFWFs">gene therapy</a> may offer the best chance for treatment.</p> <p>Though gene therapy for Rett syndrome could be years away, in 2007 geneticist Adrian Bird showed that, in theory, the syndrome could be reversed by restoring or replacing the Mecp2 gene. He did so by creating a genetic off-on switch in mice. This allowed him to keep the Mecp2 gene turned off during the mouse&rsquo;s development to cause the animal equivalent of Rett syndrome. When he then switched the gene on, it partially reversed the disorder&#39;s symptoms &ndash; even in severely affected adult mice.</p> <p>In his IMFAR presentation, Mr. Allemang-Grand described how, using MRI brain scans, he was successful in tracking how activation of the Mecp2 gene in Rett-syndrome mice restored normal brain development &ndash; at least in some parts of the brain. His results went further than previous research by showing that some parts of the brain respond much more strongly to reactivation of the Mecp2 gene than do others. &ldquo;It may be that we need other targeted treatments to rescue certain parts of the brain,&rdquo; he said.</p> <p>In addition, Mr. Allemang-Grand found that reactivating the Mecp2gene when the mice were just 50 days old produced a stronger response (greater increases in brain volume) than did waiting until the mice had reached adulthood at 80 days. This may indicate that &ldquo;the earlier the better&rdquo; when it comes to gene therapy for Rett syndrome.</p> <p>Comments Autism Speaks Interim Chief Science Officer Mathew Pletcher:</p> <p>&ldquo;It&rsquo;s encouraging to see that the gene therapy approach continues to show great promise as a transformative therapy for some subtypes of autism, even after childhood. If these approaches are going to be approved for use by people with Rett syndrome, we will need non-invasive methods to measure the benefit that the therapies would producing.&nbsp;Rylan&rsquo;s research is an important step on the path to a possible clinical trial.&rdquo;</p> <h4 class="rtecenter" style="color: blue;"> For more on gene therapy for Rett syndrome, also see this past news coverage:<br /> <a href="http://bit.ly/1QWHy21">Gene therapy reverses Rett syndrome in animal model</a><br /> <a href="http://bit.ly/1QWHzD4">Experimental diet supplement eases autism-like behaviors in mice</a></h4> <h4 align="center" style="color: red;"> <strong>For more coverage from IMFAR 2016,&nbsp;</strong><a href="https://www.autismspeaks.org/science/science-news/imfar-2016"><strong>click here</strong></a><strong>.</strong></h4> <p class="rtecenter">&nbsp;</p> <div class="media_embed"> <div height="" id="cp_widget_666a13cd-63e4-4684-bdb2-7c0d83c88207" width=""> <strong>...</strong></div> <p> <strong height="" width=""></strong></p> <script height="" type="text/javascript" width=""> var cpo = []; cpo["_object"] ="cp_widget_666a13cd-63e4-4684-bdb2-7c0d83c88207"; cpo["_fid"] = "AYJAYeN__i06"; var _cpmp = _cpmp || []; _cpmp.push(cpo); (function() { var cp = document.createElement("script"); cp.type = "text/javascript"; cp.async = true; cp.src = "//www.cincopa.com/media-platform/runtime/libasync.js"; var c = document.getElementsByTagName("script")[0]; c.parentNode.insertBefore(cp, c); })(); </script><p><noscript height="" width="">Powered by Cincopa &lt;a href=&#39;http://www.cincopa.com/video-hosting&#39;&gt;Video Hosting Platform&lt;/a&gt; for Business solution.&lt;span&gt;Autism Speaks at IMFAR 2016&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Duke University child psychologist Geraldine Dawson, president of INSAR, welcomed more than 2,000 attendees to IMFAR 2016, saying &ldquo;there&rsquo;s nothing like this &ndash; people coming together from around the world to discuss autism research findings and exchange ideas.&rdquo;&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 600&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 800&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;James Bodfish of Vanderbuilt University addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 96&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 8&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285808&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615700&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:51:44 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 480&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 640&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;M. Daniele Fallin of Johns Hopkins University addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 122&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285794&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615294&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:23:18 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Rene Gardner of Karolinska Institutet addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 98&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285767&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615281&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:39:01 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;David Mandell of University of Pennsylvania addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 108&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285708&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615325&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:45:20 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Stewart Motstofsky, Kennedy Krieger Institute, IMFAR Scientific Program co-chair addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 119&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285794&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615294&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:18:52 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;IMFAR opening press conference panel.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 137&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285519&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615311&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 1&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:11:48 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Alison Singer of Autism Science Foundation and IMFAR PR committee chair addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 128&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 14&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285697&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615478&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:09:59 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Dr. Geraldine Dawson, Duke University, INSAR president welcomes the media at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 78&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285561&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615333&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:13:46 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Jason Wolff of University of Minnesota addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 117&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285750&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615228&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:30:11 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;At the annual meeting of the Autism Speaks Toddler Treatment Network at IMFAR, Angela Lellox discussed how government policy and appropriations affect access to early intervention services. Ms. Lello is Autism Speaks&rsquo; senior director of public policy.&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2560&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 1440&lt;/span&gt;</noscript></p></div> <p>&nbsp;</p> Science autism Autism Speaks IMFAR 2016 International Meeting for Autism Research Rett Syndrome Rylan Allemang-Grand Weatherstone Predoctoral Fellowship Sat, 14 May 2016 13:00:40 +0000 Jessica Sachs 308856 at https://www.autismspeaks.org Autism Speaks leadership delivers annual IMFAR update https://www.autismspeaks.org/science/science-news/autism-speaks-leadership-delivers-annual-imfar-update <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> President and CEO Angela Geiger and Interim Chief Science Officer Mat Pletcher welcome autism researchers and stakeholders and deliver update on research priorities </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>President and CEO Angela Geiger and Interim Chief Science Officer Mat Pletcher welcome autism researchers and stakeholders and deliver update on research priorities</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/imfar_angela-mat_thumb.jpg?1463146426" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/imfar_angela-mat_685.jpg?1463146433" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">May 13, 2016</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/imfar_angela-mat_685.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /><br /> As a major sponsor of the International Meeting for Autism Research (IMFAR), Autism Speaks has the honor, each year, of addressing attendees with an update on the organization&rsquo;s research activities and priorities.</p> <p>On Friday, Autism Speaks President and Chief Executive Officer Angela Geiger welcomed IMFAR attendees, expressed how pleased she was to join Autism Speaks and reaffirmed the organization&#39;s commitment to research.</p> <p><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/angela_remarks_sized.jpg" style="padding: 5px; margin-left: 5px; border: 0px; float: right;" title="Autism Speaks President and CEO Angela Geiger welcomes IMFAR attendees, reaffirming Autism Speaks’ “continuing and steadfast commitment to science.”" />&ldquo;The one thing I want you to take away from my remarks this morning is Autism Speaks&#39; continuing and steadfast commitment to autism research,&quot; Ms Geiger said. &quot;We look forward to a renewed focus on how we collaborate and what we accomplish.&rdquo;</p> <p>Following Ms. Geiger&#39;s remarks, Autism Speaks Interim Chief Science Officer Mathew Pletcher delivered the organization&rsquo;s annual update to the autism research community and its stakeholders. Below are his full remarks:</p> <p>&nbsp;&ldquo;Thank you all for attending and participating in this year&rsquo;s International Meeting for Autism Research. I really appreciate the opportunity to come before you this morning to tell you about some of the work that we&rsquo;re conducting and supporting in furthering our mission at Autism Speaks.</p> <p>From the earliest days of our organization, it&rsquo;s been the central pillar of Autism Speaks to support the research community in developing a deeper understanding of the causes of autism as well as the developing new and improved therapies for individuals with autism.</p> <p>One of the main mechanisms we&rsquo;ve used to pursue this goal has been the awarding of grants. We continue to maintain a very active grant portfolio at Autism Speaks. There are currently 79 active projects that Autism Speaks supports through its grant program. These grants providing a total of $24.7 million in support.</p> <p><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/mat_250.jpg" style="padding: 5px; margin-left: 5px; border: 0px; float: right;" title="Autism Speaks Interim Chief Science Officer Mathew Pletcher updated IMFAR attendees on the organization's research priorities." /></p> <p>The research conducted through our grant program covers a diverse area that includes the development of new cell and animal models, work to understand the genetic and environmental causes of autism, as well as the development of improved biomarkers and diagnostic techniques.</p> <p>We&rsquo;ve also looked for opportunities to seed new areas of research that may not be attracting investment from the NIH. Areas that are exciting and novel, yet still need support to develop that key data set that will eventually attract federal funding.</p> <p>One of the new areas that we&rsquo;re focusing on is the microbiome and its relationship to the GI issues suffered by many people with autism. We want to help explore possible connections between these GI issues and some of the behavioral issues also observed in autism.</p> <p>We also continue to make it a priority to help support individuals just starting their careers in autism research. We recognize that in order to attract the best and brightest to the field of autism research, we need to be able to support them at the earliest stages of their careers.</p> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/mat_slide_1_0.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /><br /> Just last week we announced the awarding of four new fellowships to individuals undertaking pre-doctoral training. Ann Martin at the University of Utah, Eric Rubenstein at the University of North Carolina, Steven Sinisky at Duke University and Sophie Schwartz at Boston University received our Weatherstone and our first ever Royal Arch Mason fellowships to conduct their early training and research.</p> <p>One of the more ambitious projects that we&rsquo;ve undertaken in the last couple of years is our MSSNG program. MSSNG is a public private partnership that involves Autism Speaks, Stephen Scherer at Sick Kids Hospital in Toronto, and Google. This effort is generating 10,000 whole genome sequences from individuals in families affected by autism, then making that data available in combination with deep phenotypic characterization of those individuals &ndash; all available in an open-science format on the Google Cloud Platform.</p> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/mat_slide_3.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>This project has been running at full steam over a year, and at this point we&rsquo;ve completed the sequencing of nearly 7,000 full genomes. Of these, 5,000 are already openly available to the autism research community. In fact, at this point 93 different researchers from 40 institutions in nine countries have applied for and received permission to work on the MSSNG dataset.</p> <p>This work is already showing tangible results.</p> <p>Last year, Stephen Scherer published the first paper out of the MSSNG dataset <em>in Nature Medicine</em>. We are currently aware of two additional papers under review that likewise make use of the MSSNG data set and will continue to expand our knowledge around the characterization of genetic subtypes of autism.</p> <p>We are also entering a very exciting phase of MSSNG. In addition to the fact that we will likely reach our goal of 10,000 whole genome sequences publically available by the end of this year, we are initiating work now to build a community portal.</p> <p>The community portal will serve as a way to return the genetic data we&rsquo;re developing through MSSNG to the families who so kindly agreed to participate in MSSNG and share their genetic information and their clinical and health data with the research community.</p> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/mat_slide_4.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>Obviously as an organization that represents the families, we feel it&rsquo;s essential that they have the opportunity to benefit &ndash; not sometime in the future &ndash; but now from this valuable data and be able to use it in their own journey with autism. We are making sure to make this happen through the building of the community portal.</p> <p>As we continue to think about where projects like MSSNG will go, one of the big areas of focus is connecting the data to clinical care and being able to use it in the development of personalized care plans.</p> <p>One of the ways that we think we can do this is through the Autism Speaks Autism Treatment Network, which represents 14 clinical centers of excellence for the delivery of care to individuals and families with autism. More than 30,000 children and teens with autism receive treatment through the Autism Treatment Network in the course of each year.</p> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/mat_slide_5.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>And we look forward to be able to take the data coming out of MSSNG and bring it into this clinical setting and be able to understand how that genetic data can improve outcomes through this kind of partnership.</p> <p>At the same time, our Autism Treatment Network itself is looking at new and better ways to provide care to the autism community. One of these initiatives is ECHO &ndash; the Extensive for Community Health Outcomes. The goal of the ECHO initiative is to use the technology and principles of tele-health and tele-mentoring to spread the expertise and the understanding and the best practices developed within the ATN. In delivering this expertise to underserved populations, ECHO can help ensure that people who don&rsquo;t live within easy driving distance of one of the 14 ATN sites will still have the opportunity to benefit from that collective knowledge.</p> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/mat_slide_6_0.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /></p> <p>Finally one last project that I&rsquo;d like to make mention this morning is the development of the Preclinical Autism Consortium for Therapeutics, or PACT. This is a collaboration involving Mustafa Sahin, Jackie Crawley and Carrie Jones at Boston Children&rsquo;s, UC Davis and Vanderbilt.</p> <p>The goal of PACT is to develop and validate a number genetic mouse and rat models of autism in both behavioral assays and molecular endpoints. The purpose is to address a gap in the current drug development pipeline.</p> <p>If we hope to attract more industry investment in the development of new therapeutics, it&rsquo;s critical that we have in place the tools that will allow us to properly access the potential of any new therapeutic ahead of a clinical trial. In fact, we received early validation of this model. Multiple small biotech companies have come forth and expressed interest in utilizing the tools that PACT has developed to evaluate their proprietary small molecules and determine if in fact there is a path forward for the use of them in individuals with autism.</p> <p>I&rsquo;d like to conclude by saying that we at Autism Speaks are always looking to receive feedback and engage in conversation with the research community on how we can best make use of our resources. During the course of today, you&rsquo;ll find a number of us at the Autism Speaks booth just outside this room. We welcome each of you to come and join us at the booth and engage in conversations around on how we can better serve the research community and what we can do together to move forward this entire area of research for the benefit of every single person who has autism. Thank you.&rdquo;</p> <h3 align="center" style="color:red;"> <strong>For more coverage from IMFAR 2016,&nbsp;</strong><a href="https://www.autismspeaks.org/science/science-news/imfar-2016"><strong>click here</strong></a><strong>.</strong></h3> <h3 class="rtecenter" style="color:blue;"> <b>More photos from IMFAR 2016 below.</b></h3> <p></p> <div class="media_embed"> <div height="" id="cp_widget_666a13cd-63e4-4684-bdb2-7c0d83c88207" width=""> <b>...</b></div> <p> <b height="" width=""></b></p> <script height="" type="text/javascript" width=""> var cpo = []; cpo["_object"] ="cp_widget_666a13cd-63e4-4684-bdb2-7c0d83c88207"; cpo["_fid"] = "AYJAYeN__i06"; var _cpmp = _cpmp || []; _cpmp.push(cpo); (function() { var cp = document.createElement("script"); cp.type = "text/javascript"; cp.async = true; cp.src = "//www.cincopa.com/media-platform/runtime/libasync.js"; var c = document.getElementsByTagName("script")[0]; c.parentNode.insertBefore(cp, c); })(); </script><p><noscript height="" width="">Powered by Cincopa &lt;a href=&#39;http://www.cincopa.com/video-hosting&#39;&gt;Video Hosting Platform&lt;/a&gt; for Business solution.&lt;span&gt;Autism Speaks at IMFAR 2016&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Duke University child psychologist Geraldine Dawson, president of INSAR, welcomed more than 2,000 attendees to IMFAR 2016, saying &ldquo;there&rsquo;s nothing like this &ndash; people coming together from around the world to discuss autism research findings and exchange ideas.&rdquo;&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 600&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 800&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;James Bodfish of Vanderbuilt University addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 96&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 8&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285808&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615700&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:51:44 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 480&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 640&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;M. Daniele Fallin of Johns Hopkins University addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 122&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285794&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615294&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:23:18 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Rene Gardner of Karolinska Institutet addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 98&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285767&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615281&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:39:01 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;David Mandell of University of Pennsylvania addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 108&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285708&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615325&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:45:20 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Stewart Motstofsky, Kennedy Krieger Institute, IMFAR Scientific Program co-chair addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 119&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285794&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615294&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:18:52 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;IMFAR opening press conference panel.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 137&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285519&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615311&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 1&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:11:48 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Alison Singer of Autism Science Foundation and IMFAR PR committee chair addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 128&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 14&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285697&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615478&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:09:59 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Dr. Geraldine Dawson, Duke University, INSAR president welcomes the media at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 78&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285561&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615333&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:13:46 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Jason Wolff of University of Minnesota addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 117&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285750&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615228&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:30:11 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;At the annual meeting of the Autism Speaks Toddler Treatment Network at IMFAR, Angela Lellox discussed how government policy and appropriations affect access to early intervention services. Ms. Lello is Autism Speaks&rsquo; senior director of public policy.&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2560&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 1440&lt;/span&gt;</noscript></p></div> Science Autism Speaks science program IMFAR 2016 International Meeting for Autism Research Mathew Pletcher Fri, 13 May 2016 13:32:14 +0000 Jessica Sachs 308831 at https://www.autismspeaks.org Tightening the link between autism research and quality of life https://www.autismspeaks.org/science/science-news/tightening-link-between-autism-research-and-quality-life <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> Today at IMFAR, Paul Shattuck challenged scientists and their funders to rethink how we ensure that autism research is improving lives </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>Today at IMFAR, Paul Shattuck challenged scientists and their funders to rethink how we ensure that autism research is improving lives</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/imfar_shattuck_thumb.jpg?1463141668" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/imfar_shattuck_685.jpg?1463141673" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">May 13, 2016</span> </div> </div> </div> <p><img alt="" border="0" src="https://www.autismspeaks.org/sites/default/files/docs/imfar_shattuck_685.jpg" style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /><br /> Today at the International Meeting for Autism Research (IMFAR), keynote speaker Paul Shattuck challenged his fellow academics &ndash; and the agencies and organizations that fund them &ndash; to rethink how they ensure that record-setting investments in autism research are improving lives across the lifespan.</p> <p>Dr. Shattuck is the director of the Life Course Outcomes Research Program of Drexel University&rsquo;s A.J. Drexel Autism Institute, in Philadelphia. Dr. Shattuck is also a member of the Autism Speaks Family Services Committee.</p> <p>&ldquo;There have been many calls to &lsquo;move the needle&rsquo; on adult outcomes,&rdquo; he said. &ldquo;But we still need to build the gauges to see if adult outcomes are truly improving over time.&rdquo;</p> <p>By what few measures are available, he said, it appears that, overall, young adults on the autism spectrum are doing poorly despite historic expenditures into research and interventions.</p> <p>By way of example, Dr. Shattuck noted the &ldquo;<a href="https://www.autismspeaks.org/news/news-item/drexel-releases-report-vocational-rehabilitation">National Autism Indicators Report</a>&rdquo; that his team released earlier this month. (Autism Speaks Vice President of Adult Services Leslie Long served on the report&rsquo;s advisory panel.)</p> <p>The report found that nearly 18,000 people with autism used state-funded vocational rehabilitation programs in 2014, more than double the number five years earlier. But only 60 percent of these people left the program with a job. And 80 percent of these worked just part-time at a median weekly rate of $160, putting them well below the poverty level.</p> <p>In part, he proposed, we&rsquo;re doing so poorly in supporting the transition to adulthood because such a thin sliver of autism research funding is going toward lifespan issues such as developing effective supports to improve success in employment and community integration.</p> <p>The recent &ldquo;<a href="https://www.autismspeaks.org/science/science-news/iacc-announces-selections-top-advances-autism-research">Portfolio Analysis Report</a>,&rdquo; by the Interagency Autism Coordinating Committee (IACC) put that sliver at just 1 percent of total autism research expenditures in 2012, Dr. Shattuck noted. (See graphic below.)&nbsp;</p> <p>&ldquo;I don&rsquo;t have all the answers,&rdquo; he said. &ldquo;But the fact that there are cries to move the needle on adult outcomes in the context of tiny outlays in support of adult research reminds me of a quote attributed to Henry Ford: &lsquo;If you always do what you&rsquo;ve always done, you&rsquo;ll always get what you&rsquo;ve always got.&rsquo; The only way we can move the needle on outcomes is to first move the needle on funding for a research agenda that prioritizes services and life course questions.&rdquo;</p> <p>Adding to the urgency, Dr. Shattuck said, the Workforce Innovation and Opportunity Act, passed last year, requires all states to dedicate at least 15 percent of their vocational rehabilitation budgets to programs for transition-age youth (teens and young adults).</p> <p>&ldquo;So here we are embarking on a huge policy experiment, with state governments spending huge amounts of money, but with little guidance and no plan for measuring whether any of this effort is having the desired impact of improving to lives,&rdquo; he warned.</p> <p>The solutions must go beyond traditional academic research, Dr. Shattuck warned. &ldquo;It takes a lot of outreach with legislators and their staffers, on both state and federal levels,&rdquo; he said. &ldquo;It&rsquo;s not the kind of effort that is traditionally valued in academia with our culture of peer-reviewed journals as the way to impress other academics.&rdquo;</p> <p>At the same time, he noted that his team&rsquo;s 2015 &ldquo;<a href="http://drexel.edu/autisminstitute/research-projects/research/ResearchPrograminLifeCourseOutcomes/IndicatorsReport">National Autism Indicators Report: Transition into young adulthood</a>&rdquo;&nbsp;was selected by the IACC as one of the most influential papers of the year. &ldquo;That helps counter critics who say that the applied indicators work we&rsquo;re doing isn&rsquo;t real science that merits funding.&rdquo;</p> <p>In conclusion, Dr. Shattuck noted that when he started his career in the field of autism research in the 1990s, it was &ldquo;a tiny field&rdquo; but one where a small handful of research and advocacy organizations were making a strategic effort to get researchers to turn their attention to neglected areas of research. &ldquo;I think what we need is a return to such a big vision strategy on the funding side to incentivize work in the vital area of lifespan issues.&rdquo;</p> <h4 class="rtecenter" style="color: blue;"> Autism Speaks has funded and continues to fund lifespan research and support programs, including work by Dr. Shattuck. To learn more about these programs, also see:</h4> <p>* More than <a href="https://science.grants.autismspeaks.org/search/results.php?newsearch=1&amp;source%5B%5D=family+services&amp;status%5B%5D=both&amp;search=&amp;topics%5B%5D=Young+Adults%2FAdults&amp;title%5B%5D=&amp;investigator%5B%5D=&amp;postal_code%5B%5D=&amp;distance=100+miles">$3 million in grant funding</a> for services for adults who have autism</p> <p>* <a href="http://www.thespectrumcareers.com/">TheSpectrumCareers.com</a>, a jobs portal for adults with autism</p> <p>* <a href="https://www.autismspeaks.org/family-services/bilt">Building Independent Lives through Training (BILT)</a>, an online course for those who support the daily living needs of adults with autism</p> <p>* The Autism Speaks <a href="https://www.autismspeaks.org/family-services/tool-kits/employment">Employment Tool Kit</a>, <a href="https://www.autismspeaks.org/family-services/housing-and-community-living">Housing and Residential Supports Tool Kit</a>, <a href="https://www.autismspeaks.org/adult-tool-kit">Adult Diagnosis Tool Kit</a> and <a href="https://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit">Transition Tool Kit</a></p> <p>* <a href="https://www.autismspeaks.org/advocacy/advocacy-news/housing-and-community-living-initiative">Housing and Community Living Initiative</a> to increase access to home and community-based services&nbsp;</p> <h3 class="rtecenter" style="color:red;"> <strong>Follow all our IMFAR coverage <a href="https://www.autismspeaks.org/science/science-news/imfar-2016">here</a>.</strong></h3> <h3 class="rtecenter" style="color:blue;"> <strong>View photos from IMFAR 2016 below. <div class="media_embed"> <div height="" id="cp_widget_666a13cd-63e4-4684-bdb2-7c0d83c88207" width=""> ...</div> <script height="" type="text/javascript" width=""> var cpo = []; cpo["_object"] ="cp_widget_666a13cd-63e4-4684-bdb2-7c0d83c88207"; cpo["_fid"] = "AYJAYeN__i06"; var _cpmp = _cpmp || []; _cpmp.push(cpo); (function() { var cp = document.createElement("script"); cp.type = "text/javascript"; cp.async = true; cp.src = "//www.cincopa.com/media-platform/runtime/libasync.js"; var c = document.getElementsByTagName("script")[0]; c.parentNode.insertBefore(cp, c); })(); </script><p> <noscript height="" width="">Powered by Cincopa &lt;a href=&#39;http://www.cincopa.com/video-hosting&#39;&gt;Video Hosting Platform&lt;/a&gt; for Business solution.&lt;span&gt;Autism Speaks at IMFAR 2016&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Duke University child psychologist Geraldine Dawson, president of INSAR, welcomed more than 2,000 attendees to IMFAR 2016, saying &ldquo;there&rsquo;s nothing like this &ndash; people coming together from around the world to discuss autism research findings and exchange ideas.&rdquo;&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 600&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 800&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;James Bodfish of Vanderbuilt University addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 96&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 8&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285808&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615700&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:51:44 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 480&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 640&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;M. Daniele Fallin of Johns Hopkins University addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 122&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285794&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615294&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:23:18 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Rene Gardner of Karolinska Institutet addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 98&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285767&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615281&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:39:01 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;David Mandell of University of Pennsylvania addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 108&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285708&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615325&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:45:20 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Stewart Motstofsky, Kennedy Krieger Institute, IMFAR Scientific Program co-chair addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 119&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285794&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615294&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:18:52 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;IMFAR opening press conference panel.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 137&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285519&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615311&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 1&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:11:48 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Alison Singer of Autism Science Foundation and IMFAR PR committee chair addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 128&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 14&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285697&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615478&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:09:59 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Dr. Geraldine Dawson, Duke University, INSAR president welcomes the media at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 78&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285561&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615333&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:13:46 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Jason Wolff of University of Minnesota addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 117&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285750&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615228&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:30:11 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;At the annual meeting of the Autism Speaks Toddler Treatment Network at IMFAR, Angela Lellox discussed how government policy and appropriations affect access to early intervention services. Ms. Lello is Autism Speaks&rsquo; senior director of public policy.&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2560&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 1440&lt;/span&gt;</noscript></p></div> <p> </p></strong><br /> &nbsp;</h3> Science Adults autism life course research autism research Drexel IMFAR 2016 IMFAR keynote International Meeting for Autism Research Paul Shattuck Sat, 14 May 2016 13:45:51 +0000 Jessica Sachs 308851 at https://www.autismspeaks.org Autism and the microbiome: Case study delivers surprises and guidance https://www.autismspeaks.org/science/science-news/autism-and-microbiome-case-study-delivers-surprises-and-guidance <div class="field field-sub-title"> <div class="field-items"> <div class="field-item odd"> First findings from Autism Speaks gut-brain research project will guide study of microbiome’s role in autism-related GI issues and behavior </div> </div> </div> <div class="field field-news-teaser"> <div class="field-items"> <div class="field-item odd"> <p>First findings from Autism Speaks gut-brain research project will guide study of microbiome’s role in autism-related GI issues and behavior</p> </div> </div> </div> <div class="field field-news-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_news_image" width="400" height="300" alt="" src="https://www.autismspeaks.org/sites/default/files/images/news/microbiome_thumb_0.jpg?1462893979" /> </div> </div> </div> <div class="field field-feature-image"> <div class="field-items"> <div class="field-item odd"> <img class="imagefield imagefield-field_feature_image" width="685" height="385" alt="" src="https://www.autismspeaks.org/sites/default/files/images/features/microbiome_685.jpg?1462893987" /> </div> </div> </div> <div class="field field-publish-date"> <div class="field-items"> <div class="field-item odd"> <span class="date-display-single">May 13, 2016</span> </div> </div> </div> <p><img alt="" class="caption" src="https://www.autismspeaks.org/sites/default/files/docs/microbiome_685.jpg" style="margin-right: auto; margin-left: auto; max-width: 100%; display: block; border-width: 0px; border-style: solid;" title="Best known for helping us digest our food, the intestinal microbiome has effects throughout the brain and body. " /></p> <p>Today at the International Meeting for Autism Research (IMFAR), microbial geneticist Ruth Ann Luna reported the <a href="https://www.autismspeaks.org/sites/default/files/docs/luna_microbiome_imfar_abstract.pdf">first results</a> from her team&rsquo;s pioneering investigation into the intestinal microbiome&rsquo;s role in autism-related GI distress and behavioral problems.</p> <p><img alt="" class="caption" src="http://www.tmcnews.org/wp-content/uploads/2015/03/Drs-Versalovic-Luna_003-350x350.jpg" style="padding: 5px; margin-left: 5px; border: 0px; float: right;" title="Pathologist James Versalovic, director of the Texas Children’s Microbiome Center (left), and Ruth Ann Luna, the center’s director of medical metagenomics, are co-investigators on one of the first major research projects in the Autism Speaks Gut-Brain Research Initiative. Photo by Scott Dalton, courtesy Texas Medical Center." /><a href="http://bit.ly/1XjpMO4">The study</a> is one of the first major projects funded by the Autism Speaks &ldquo;<a href="http://bit.ly/26XSWGu">Gut-Brain Research Initiative</a>.&rdquo; Dr. Luna directs the medical metagenomics program at the Texas Children&rsquo;s [Hospital] Microbiome Center, in Houston.</p> <p>The microbiome includes trillions of intestinal microbes that help us digest our food. In recent years, research has shown that this microbial community also helps regulate the immune system and that imbalances can affect health throughout the brain and body. In particular, some autism researchers have found that some &ndash; perhaps many &ndash; children with autism have unusual species or imbalances of gut bacteria. Still other studies have made clear that GI problems are unusually common among children with autism.</p> <p>Dr. Luna&rsquo;s IMFAR presentation &ndash; &ldquo;A Case Study of the Gut Microbiome in ASD: Correlation of Microbial Profiles with GI and Behavioral Symptoms&rdquo; &ndash; described several stand-out findings from a two-week study analyzing the bacteria found in daily stool samples from a child affected by autism and gastrointestinal (GI) issues. For comparison, the researchers also analyzed the bacteria present in the stool of the child&rsquo;s unaffected sibling.</p> <p>Among their notable findings:</p> <p>* All of the daily stool samples from the child with autism contained four organisms that earlier research had associated with autism. These included <em>Sarcina ventriculi</em>, <em>Barnesiella intestihominis,</em> <em>Clostridium bartlettii, </em>and <em>Clostridium bolteae.</em> By contrast, none of these bacteria appeared in the stool of the unaffected sibling.</p> <p>* The bacterium <em>Haemophilus parainfluenzae </em>appeared in the stool of the child with autism during a three-day period when the child experienced GI pain, diarrhea and a spike in challenging behaviors including self-injury.</p> <p>* On a separate two-day period, another spike in <em>H. parainfluenzae </em>correlated with another increase in self-injurious behavior &ndash; but this time without any change in stool consistency or obvious signs of GI pain.</p> <p>The appearance of <em>H. parainfluenzae </em>in the child&rsquo;s stool came as a surprise to the researchers. This bacterium normally resides in the respiratory tract, where its overgrowth can cause ear, throat and lung infections. None of those sicknesses were present in the child or family members during the study period, Dr. Luna said.</p> <p><strong>Guidance for larger study</strong><br /> The primary purpose of the case study was to help the team develop the best methods for their larger autism microbiome investigation. For example, they wanted to determine whether a single stool specimen could accurately capture a child&rsquo;s intestinal microbiome. In other words, does the gut&rsquo;s microbial community remain stable or does it change significantly from day to day in significant ways.</p> <p>Based on the intriguing results of this first case study, the researchers plan to collect daily stool samples from a subset of the study participants in the larger study underway.</p> <p>&ldquo;In our larger study, we hope to determine whether there are subgroups of children with autism who can be helped by having their gut microbiome characterized &ndash; in addition to the usual diagnostic tests for autism,&rdquo; Dr. Luna says. &ldquo;In these cases, there may be new treatment pathways that can significantly improve behavioral issues and GI distress &ndash; even when outward GI symptoms such as constipation or diarrhea aren&rsquo;t obvious.&rdquo;</p> <p><strong>Participants still needed</strong><br /> The Texas Children&rsquo;s Hospital study continues to recruit children with autism and their unaffected siblings, as well as children in families unaffected by autism. Participation involves the collection of stool samples and a series of surveys and diaries completed by parents. Interested families can contact Dr. Luna at <a href="mailto:raluna@bcm.edu">raluna@bcm.edu</a>.</p> <h4 align="center" style="color: blue;"> <strong>For more on this research, also see Dr. Luna&rsquo;s blog: &ldquo;</strong><a href="https://www.autismspeaks.org/blog/2015/03/04/gut-feeling-unlocking-mysteries-autism-autism-speaks"><strong>A gut feeling: Unlocking the mysterious of autism with Autism Speaks</strong></a><strong>.&rdquo;</strong></h4> <h3 align="center" style="color:red;"> <strong><img alt="" border="0" src="http://ww1.prweb.com/prfiles/2014/05/13/11851382/gI_82237_IMFAR.png " style="margin-right:auto;margin-left: auto; max-width:100%; display: block;" /><br /> For more coverage from IMFAR 2016, </strong><a href="https://www.autismspeaks.org/science/science-news/imfar-2016"><strong>click here</strong></a><strong>.</strong></h3> <h3 class="rtecenter" style="color: blue;"> <strong>More photos from IMFAR below.</strong></h3> <p></p> <div class="media_embed"> <div height="" id="cp_widget_666a13cd-63e4-4684-bdb2-7c0d83c88207" width=""> <strong>...</strong></div> <p> <strong height="" width=""></strong></p> <script height="" type="text/javascript" width=""> var cpo = []; cpo["_object"] ="cp_widget_666a13cd-63e4-4684-bdb2-7c0d83c88207"; cpo["_fid"] = "AYJAYeN__i06"; var _cpmp = _cpmp || []; _cpmp.push(cpo); (function() { var cp = document.createElement("script"); cp.type = "text/javascript"; cp.async = true; cp.src = "//www.cincopa.com/media-platform/runtime/libasync.js"; var c = document.getElementsByTagName("script")[0]; c.parentNode.insertBefore(cp, c); })(); </script><p><noscript height="" width="">Powered by Cincopa &lt;a href=&#39;http://www.cincopa.com/video-hosting&#39;&gt;Video Hosting Platform&lt;/a&gt; for Business solution.&lt;span&gt;Autism Speaks at IMFAR 2016&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Duke University child psychologist Geraldine Dawson, president of INSAR, welcomed more than 2,000 attendees to IMFAR 2016, saying &ldquo;there&rsquo;s nothing like this &ndash; people coming together from around the world to discuss autism research findings and exchange ideas.&rdquo;&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 600&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 800&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;James Bodfish of Vanderbuilt University addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 96&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 8&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285808&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615700&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:51:44 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 480&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 640&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;M. Daniele Fallin of Johns Hopkins University addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 122&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285794&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615294&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:23:18 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Rene Gardner of Karolinska Institutet addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 98&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285767&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615281&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:39:01 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;David Mandell of University of Pennsylvania addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 108&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285708&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615325&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:45:20 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Stewart Motstofsky, Kennedy Krieger Institute, IMFAR Scientific Program co-chair addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 119&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285794&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615294&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:18:52 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;IMFAR opening press conference panel.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 137&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285519&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615311&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 1&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:11:48 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Alison Singer of Autism Science Foundation and IMFAR PR committee chair addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 128&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 14&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285697&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615478&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:09:59 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Dr. Geraldine Dawson, Duke University, INSAR president welcomes the media at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 78&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285561&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615333&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:13:46 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;Jason Wolff of University of Minnesota addresses the press at the IMFAR press conference.&lt;/span&gt;&lt;span&gt;flash&lt;/span&gt;&lt;span&gt; 24&lt;/span&gt;&lt;span&gt;cameramake&lt;/span&gt;&lt;span&gt; Apple&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 3264&lt;/span&gt;&lt;span&gt;dir&lt;/span&gt;:&lt;span&gt; 117&lt;/span&gt;&lt;span&gt;alt&lt;/span&gt;:&lt;span&gt; 7&lt;/span&gt;&lt;span&gt;lat&lt;/span&gt;:&lt;span&gt; 39.285750&lt;/span&gt;&lt;span&gt;long&lt;/span&gt;:&lt;span&gt; -76.615228&lt;/span&gt;&lt;span&gt;orientation&lt;/span&gt;&lt;span&gt; 6&lt;/span&gt;&lt;span&gt;camerasoftware&lt;/span&gt;&lt;span&gt; 9.3.1&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 5/11/2016 3:30:11 PM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2448&lt;/span&gt;&lt;span&gt;cameramodel&lt;/span&gt;&lt;span&gt; iPhone 6&lt;/span&gt;&lt;span&gt;IMFAR 2016&lt;/span&gt;&lt;span&gt;At the annual meeting of the Autism Speaks Toddler Treatment Network at IMFAR, Angela Lellox discussed how government policy and appropriations affect access to early intervention services. Ms. Lello is Autism Speaks&rsquo; senior director of public policy.&lt;/span&gt;&lt;span&gt;originaldate&lt;/span&gt;&lt;span&gt; 1/1/0001 6:00:00 AM&lt;/span&gt;&lt;span&gt;width&lt;/span&gt;&lt;span&gt; 2560&lt;/span&gt;&lt;span&gt;height&lt;/span&gt;&lt;span&gt; 1440&lt;/span&gt;</noscript></p></div> <p></p> <p>&nbsp;</p> <p>&nbsp;</p> <p align="center">&nbsp;</p> Science autism research Autism Speaks Gut-Brain research initiative autism's gut-brain connection Barnesiella intestihominis Clostridium bartlettii Clostridium bolteae GI disorders and autism Haemophilus parainfluenzae IMFAR 2016 James Versalovic Ruth Ann Luna Sarcina ventriculi Texas Children's Microbiome Center Fri, 13 May 2016 09:34:04 +0000 Jessica Sachs 308696 at https://www.autismspeaks.org