Autism Speaks Newsroom @ INSAR 2019

Autism Speaks research featured at international autism conference

April 26, 2019

Watch our Flash Talks with Autism Speaks-funded researchers about their findings presented at INSAR.


More than 30 research studies funded by Autism Speaks will be featured at the annual meeting of the International Society for Autism Research (INSAR), this year in Montreal, Canada, May 1-4. Autism Speaks is also a longtime sponsor for the conference, the world’s largest gathering of autism scientists, doctors, therapists, caregivers and individuals on the autism spectrum.

Autism Speaks science staff, funded researchers and clinicians will give oral research presentations, present posters and serve as expert panelists on the latest developments in autism research. Presentations at INSAR offer the early findings of one or more highly promising research projects that were competitively selected by the INSAR leadership.

“This year’s INSAR meeting will feature many innovative Autism Speaks-funded studies, reflecting our mission to rapidly discover more about autism so that we can provide solutions for people with autism and their families quickly,” says Autism Speaks Chief Science Officer Thomas Frazier. “Across disciplines including genetics, neurobiology, diagnosis, and treatments, INSAR is an opportunity for the autism science community to highlight and share the most meaningful advances in our understanding of autism and effective interventions that improve lives.”

Continuing coverage of INSAR news will be updated throughout the week.

You can view the full lineup of Autism Speaks-affiliated presentations and activities in the program book.

Day 1: Wednesday, May 1

International autism conference focuses on translating science into solutions

Watch the opening press conference.

MONTREAL (May 1, 2019) -- Organizers opened the annual meeting of the International Society for Autism Research (INSAR) on Wednesday with a preview of select studies highlighting how genetic and biological research in autism is translating into practical solutions for individuals with autism and their families.

INSAR president Simon Baron-Cohen, Ph.D., of the University of Cambridge, said the focus for this year’s meeting was a balance between early-stage biological studies and research that has more immediate impact on quality of life.

“Scientists need to keep a very good dialogue with autistic people and their families,” said Dr. Baron-Cohen at the opening press conference. “This is the place where we listen and learn.”

This year’s meeting features more oral presentations than in previous years, featuring the best ongoing research into issues affecting individuals with autism, said Joseph Buxbaum, Ph.D., of the Icahn School of Medicine and chair of the scientific review committee for INSAR. Dr. Buxbaum is also an Autism Speaks Medical and Scientific Advisory Committee member.

“We wanted to expand the scope of autism research in these presentations,” Dr. Buxbaum said. “There have been enormous breakthroughs in the past couple of years.”

The scientific review panel chose studies representing a range of fields:

  • Issues facing individuals with autism across the lifespan, including transition to adulthood as well as co-occurring conditions like sleep problems, GI problems, and a range of mental health conditions
  • Biomarkers linked to autism and how they can be used to diagnose autism and treat symptoms
  • Technological advances that are fueling big-data studies as well as innovative interventions

Many studies slated for presentation this week incorporate genetics, highlighting the importance of major genetic studies including Autism Speaks’ MSSNG database of whole-genome sequences of individuals with autism and their families, said Stephen Scherer, Ph.D., of The Hospital for Sick Children (SickKids) of Toronto and research director for MSSNG.

This focus on translational research that combines genetic and clinical data is an opportunity to more rapidly uncover ways to tailor treatments to an individual’s health needs using personalized medicine, Scherer said. Scherer’s study slated for INSAR presentation creates stem cells from genetic samples to look at how they respond to different conditions.

“We need to have a lot of data to really figure out what’s going on,” said Dr. Scherer. “We’re very excited as a worldwide community to take this and move the science and the translation forward.”

Four other studies were highlighted at the opening press conference:

  • GI symptoms in individuals with autism have been linked to patterns in the genetic and bacterial makeup of their GI tract in a study by Ruth Ann Luna, Ph.D., of Baylor College of Medicine, whose study received grant funding from Autism Speaks. These findings lay the groundwork for identifying treatments that may be effective for individuals who have certain GI markers associated with GI symptoms and resulting behavioral issues.
  • Children who are screened by their pediatricians for developmental progress at well-child visits can potentially be identified as high-risk for autism by using a combination of two screening measures commonly used by pediatricians. Researcher Whitney Guthrie, Ph.D., of Children’s Hospital of Philadelphia, found that combining these screening tools helped identify 75 percent of children by age 30 months who would later be diagnosed with autism – far more than either screening measure alone. This earlier identification between 9 and 30 months may lead to earlier diagnosis and treatment of developmental issues such as autism.
  • To help develop tools to improve sleep for children with autism, researcher Olivia Veatch, Ph.D., of the University of Pennsylvania, is using genetic data from individuals with autism to see how their sleep-related genes compare with typical individuals with insomnia. This big-data approach is one of the ways that genetic data collections are speeding up precision treatments for people with autism in areas like sleep that affect quality of life.
  • A new technology to help improve personal safety is being developed by Julia Parish-Morris, Ph.D., of Children’s Hospital of Philadelphia, in partnership with tech company Floreo. Dr. Parish-Morris developed a virtual reality program that allows individuals with autism to practice having safe interactions with police. Researchers hope the program, which helped ease anxiety among participants and improved their ability to have safe interactions with police, could be used widely among schools and families at home to prepare to safely interact with police and in other emergency situations.

Day 2: Thursday, May 2

Group of studies show sleep problems make other health and family issues challenging

MONTREAL  (May 3, 2019) -- A collection of studies presented at the International Society for Autism Research’s annual meeting yesterday demonstrate how sleep problems in children with autism make other health and family issues more challenging, pointing to a need for physicians to assess sleep problems when caring for individuals with autism.

The studies, based on a collaboration of researchers from three sites in Autism Speaks’ Autism Treatment Network and funded by the Interactive Autism Network, found that poor sleep in children with autism led to more problem behaviors, lower parent employment, more sensory problems, and more health problems for the children and their caregivers.

Children with autism and severe sleep problems had more problem behaviors and went to the doctor more often than children with autism who did not have severe sleep problems. Their parents were also more likely to be overweight or have diabetes, anxiety or depression.

Severe sleep problems in children with autism led to caregivers reporting a need to stay home to care for their child rather than work outside the home. Those who did work also missed more days of work than parents of children with autism who did not have severe sleep problems.

Measuring sleep problems was a separate question the researchers studied. Looking at a common sleep questionnaire given to parents at well-child visits, researchers found that it accurately picked up severe sleep problems when parents rated their child’s sleep very poorly. But of parents who reported only mild sleep problems, between 54 and 67 percent of those children actually had severe sleep problems.

Because sleep leads to more problem behaviors, stress and health problems, this collection of studies suggests that health care providers who are treating patients with autism should talk with them about sleep as a way to help manage those other issues.

Find all of the Autism Speaks sleep resources here, or download Autism Speaks’ Sleep Tool Kit for parents and caregivers, including video tools for creating healthy bedtime routines and daytime habits.

Researchers included Daniel Coury of Nationwide Children’s Hospital in Columbus, Ohio, Amanda Bennett of Children’s Hospital of Philadelphia, and Beth Malow of Vanderbilt University in Nashville, all of which are sites that collaborate through Autism Speaks’ Autism Treatment Network. The network develops tools for providers and families to help manage medical conditions that commonly co-occur in individuals with autism. The research team also included Alison Marvin of Kennedy Krieger Institute and J. Keily Law of Kennedy Krieger Institute and Johns Hopkins University.


Day 3: Friday, May 3

Most health providers are not supporting transition to adult care for patients with special health care needs, study finds

MONTREAL (May 3, 2019) -- On Thursday, Autism Speaks-funded researcher Lisa Croen shared her findings that most health care providers are not using transition best practices to support adolescents and young adults with special health care needs as they transition to adult health care, but nearly all of them want more training to do so.

In a major shift toward non-biological research at the annual meeting of the International Society for Autism Research (INSAR), transition to adulthood research emerged as a key focus area. Roughly 50,000 individuals with autism reach transition age each year, and that number is expected to grow to reflect increases over the last decade in the rate of autism diagnoses in younger children as they age.

Croen, a researcher at Kaiser Permanente Northern California (KPNC), surveyed pediatricians and adult primary care providers in the KPNC network about their knowledge of the six core elements of health care transition for teens and young adults with special health care needs, including autism.

As many as 80 percent of providers reported they did not have or know about any department-wide procedure for this transition of care through their health system employer.

Despite that, about half said their departments were providing education about transition practices generally. Ninety percent said they wanted to have more training to support transition of care.

About half of pediatric providers and 60 percent of adult providers rarely or never use their own practices for planning transition of care, regardless of departmental policies. Even more providers rarely or never discuss the legal concerns during transition of health care or use a standard tool to assess their transition needs. Roughly half of providers surveyed did not communicate with the former or new provider.

Croen’s study found that the average age of transition planning was happening between ages 16 and 18, although the American Academy of Pediatrics has recommended for several years that planning begin by ages 12 to 15.

Croen concluded that researchers should look for ways to develop and implement training policies for health care providers to ensure that they are providing comprehensive transition to adult care for people with autism.

Autism Speaks provides transition resources for families, including our Transition to Adulthood Tool Kit.

Day 4: Saturday, May 4

In areas with few specialists, training caregivers may benefit children with developmental disorders in test sites in Africa, Canada

MONTREAL (May 4, 2019) -- Underserved regions around the world lack resources – like qualified professionals and educational services – for supporting individuals with autism and other developmental conditions. Many may also lack basic health care and schools.

When there are no specialists, care for these individuals often falls to parents and other family members. Recognizing this, the World Health Organization developed a training program for parents and other caregivers of children with autism that would supplement any local resources.

With technical support from Autism Speaks, the Caregiver Skills Training program is being tested in 28 sites around the world. Researchers presented test data from rural and urban sites in Africa and Canada on May 4 at the annual meeting of the International Society for Autism Research.

Researchers found that adapting the program to each community with the input of local stakeholders was a critical step toward supporting individuals with autism and their families at the local level when little or no supports are available.

“The reason we undertook this exercise is really because we recognize that the vast majority of our families, our communities around the world, they have almost nothing,” said Andy Shih, Ph.D., Senior Vice President, Public Health and Inclusion at Autism Speaks. “This is really a first step in trying to address that issue.”

Caregiver Skills Training is designed to train non-specialists to teach caregivers in remote or underserved areas. The test sites looked at ways to adapt the program for areas with little or no health or social services.

At testing sites in Ethiopia, where 80 percent of the population lives in rural areas, researchers compared specialist-led training in an urban setting in Addis Ababa with training led by non-specialist facilitators in two groups in the rural village of Butajira.

While participants in both settings found the training useful and that it improved their overall well-being, adapting the program to rural areas had its own challenges, including travel distance to the training sessions, caregiver literacy levels, and the amount of time needed for facilitators to prepare for training sessions.

In contrast, the highly structured health systems in Québec province brought different challenges. There, researchers gathered a group of 15 health and education professionals to test the program and create a feedback system to inform researchers and collaborate on adapting the program locally.

Trainers found language barriers were greater than they expected – caregivers in this region spoke more than 40 different languages. Many caregivers were also experience unmet health and social needs, while also receiving other treatments during the training period that could influence the CST measurements.

Part of the training includes tools, such as illustrated guides, to show caregivers things they can do to improve social and communications skills in their children with autism or other developmental disabilities.

But many times, local custom or family norms meant the materials needed to change with the location.

For example, in the two South African sites of Ikageng Township and Barolong village, children do not typically help with cooking family meals. Training materials showing that activity were changed to show children instead helping with clean-up, a more common role for kids there.

Program officials expect to continue to adapt the program, building on successes and considering challenges when designing local versions of the program in new locations. Ultimately, they hope the program will support individuals with developmental disorders like autism in their home community and give them information to caregivers about the best ways to help them live full lives.

“If we can start to chip away at this large population of families who have almost nothing, we are making an important contribution to our community,” Shih said. “Over time, hopefully, there will be a new normal globally in terms of access to evidence-based support, no matter where you are, no matter where you live.”

Find out more about the Caregiver Skills Training program

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