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Autism Speaks ATN Centers Bring “Tool Kit Talks” to Distant Families

 

 

 

 

 

 

 

 

Blog post by (clockwise from top left) Alicia Curran, Kristin Sohl, Martha Porras Hernandez and Larry Yin. Ms. Curran is the site coordinator for the Autism Speaks Autism Treatment Network (ATN) center at the University of Missouri’s Thompson Center for Autism & Neurodevelopmental Disorders, in Columbia, and Dr. Sohl is its principal investigator and medical director. Ms. Porras Hernandez is the site coordinator for the ATN center at Children’s Hospital Los Angeles, and Dr. Yin is its co-principal investigator and medical director.

As many readers of this website know, the Autism Speaks Autism Treatment Network (ATN) has developed a wide range of important and practical tool kits for families. This work is made possible by the ATN’s role as the federally funded Autism Intervention Research Network on Physical Health (AIR-P). And these tool kits can be downloaded free of charge from the Autism Speaks website, here.

Each tool kit offers information and strategies to help families through their journey of raising a child with autism. They are designed for self-directed learning. However, our ATN teams at the University of Missouri’s Thompson Center and the Children’s Hospital Los Angeles have found we can enhance the kits' effectiveness with workshops that reinforce their key messages and provide families with opportunities for interaction with our specialists.

In addition, we’re dedicated to taking ATN tool kits and expertise beyond the doors of our centers. We are broadening our reach to families in ways that have taken us down rural roads in southern Missouri and, via video conferencing, across the Pacific to the island of Guam.

Our centers have long shared the goal of providing personal training to families and professionals in our surrounding communities and beyond. Thanks to the support of the Autism Speaks community and AIR-P funding, this vision has become a reality.

Today we’d like to share with you two exciting pilot programs we developed.

Taking tool kits “on the road” in Missouri
Our Missouri Thompson Center team created a framework for “Tool Kit Talk” workshops. Our first workshops highlighted Strategies to Improve Sleep in Children with Autism Spectrum Disorders and the Guide for Managing Constipation in Children.

This summer, we launched a series of Tool Kit Talk workshops in six communities across our state. Taking the workshop “on the road” provided a fantastic opportunity for collaborating with health systems outside the University of Missouri’s medical network. (See slideshow below.)

Building relationships with primary care physicians and hospitals throughout Missouri is particularly important to the Thompson Center, as we recognize coordinated care improves the outcomes of our children and families, many of whom travel out of their communities to receive specialized autism care at our ATN center. Rural regions are a priority as they tend to have limited autism resources.

We structured the workshops to serve a diverse audience and encouraged both families and healthcare professionals to attend. Our panel of instructors provides detailed explanations of concepts, paired with real life experiences. Site Coordinator Alicia Curran, for example, is a parent of a 13-year-old son with autism and shares many of her family’s experiences.  

Each workshop includes ample opportunity for questions and answers. We have seen how this both fosters understanding of the material and encourages networking among parents and professionals. This networking, we believe, is one of the most valuable components of our workshops. It provides enduring benefits that continue long after we pack up our materials and return to our center.

By the end of each workshop, participants have an abundance of resources – including hard copies of the tool kits discussed and pre-loaded flash-drives containing the entire collection of Autism Speaks tool kits.

Thanks to the success of our first two workshops, the Thompson Center team continues to host “Tool Kit Talks” throughout Missouri. Our goals include developing additional workshops and sharing videotaped sessions beyond our state.

Hands across the waters
Meanwhile, our ATN team at Children's Hospital Los Angeles developed a unique telemedicine collaboration that is providing tool kit training to parents and healthcare professionals in Guam. These trainings have featured strategies from several ATN/AIR-P guides, including those on sleep and constipation, as well as Challenging Behaviors, Visual Supports and  Feeding Behavior. (See slideshow below.)

In this collaboration, we partnered with faculty members in the University of South California’s California Leadership Education in Neurodevelopmental and Related Disabilities Training Program and the University of Guam Center for Excellence in Developmental Disabilities Education, Research and Services as well as members of Autism Community Together (ACT) – a parent organization in Guam.

Families working with professional service providers are in the best position to care for children with complex developmental concerns. Parent leaders from ACT attended the training sessions and are now supporting other families facing similar difficulties in Guam. At the same time, our goals include meeting the need for training professionals who specialize in the delivery of healthcare to children who have or are at risk for neurodevelopmental and related disabilities. 

Telemedicine is just the newest strategy our ATN team is using to extend the reach of our support services far beyond our own backyard. In developing it, we recognized the family is the constant in a child’s life. While doctors and teachers come and go, the family provides a constant source of support. We see our telemedicine parent trainings as particularly crucial for providing information to communities that have access to relatively little support for families affected by autism.

1. Introduction to Behavioral Health Treatments, moderated by child psychologist Irina Zamora.

2. Sleep and ASD with Sleep Quick Tips, moderated by pediatric sleep specialist Iris Perez.

3. Managing Constipation in Children with ASD, with developmental-behavioral pediatrician Thusa Sabapathy and registered dietitian Hope Wills.

4. Visual Supports and ASD, with speech-language pathologist Aaron Tanner.

Upon completion of the fourth training module, our parents in Guam wanted more! Our provider team held a fifth training session around Exploring Feeding Behaviors in Autism, with occupational therapist Kimberly Rice and registered dietitian Hope Wills. Parents, community organization representatives, regional center representatives, educators and other healthcare workers attended this training, and each attendee received Autism Speaks tool kits on all of the topics covered from this series.

Our CHLA AS-ATN team is now working with the Southern California Clinical and Translational Science Institute to video-record these telemedicine trainings. We hope to create a library of on-line tool kit trainings that we can share through our own family resource center, regional center libraries and the entire Autism Speaks Autism Treatment Network.

As we compare notes, our ATN teams in Missouri and Los Angeles are excited about future workshops and telemedicine collaborations in our states and around the world. We hope to develop additional workshops and programs and hope that they will inspire other centers as well.

We want to thank the Autism Speaks community for helping us make our vision a reality.


Learn more about the Autism Speaks Autism Treatment Network here.
Find the ATN center nearest you 
here.
Explore our archive of ATN expert-advice blogs and news stories 
here.

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The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.