By Autism Speaks Autism Treatment Network (ATN) Coordinator Amy Hess, at Nationwide Children's Hospital, in Columbus, Ohio; and ATN Coordinator Alicia Curran, at the Thompson Center for Autism and Neurodevelopmental Disorders, in Columbia, Missouri.
As mothers of teenage boys with autism, we both know – first hand – how important it is to find physicians who understand how to care for children with autism. Unfortunately, the need for such expertise far outstrips the availability in most communities.
As a result, healthcare appointments can be anxious affairs for both physicians and patients. Unfortunately, discomfort on the part of a physician can lead to hesitancy in treatment and a tendency to refer children with autism to specialists for relatively routine healthcare needs.
Expanding autism expertise in healthcare is one of the four strategic goals of the Autism Speaks ATN. (See above.) Every one of the 14 centers in the ATN provides such specialty care. But our 14 centers aren’t enough to meet the great and growing need of the autism community.
In addition, our two ATN centers (in Ohio and Missouri) serve many families who drive long distances to reach our clinics. They have limited options for autism-sensitive primary care in their own communities. These families need local providers who understand their children’s health needs and can address issues that arise between their specialist appointments at our ATN centers.
To help address this need, our centers have both developed model training programs for family doctors, pediatricians and other primary care physicians. This work is being led by developmental pediatrician Kristin Sohl, medical director of the University of Missouri’s Thompson Center, and Karen Ratliff-Shaub, medical director of Nationwide’s Nisonger Center.
Through local workshops and webinars and virtual learning networks, our experts are sharing strategies that improve care for children with autism. They are enabling more and more primary-care physicians to help manage autism-related medical conditions. This includes addressing such commonly co-occurring conditions as sleep difficulties, gastrointestinal programs, seizure disorders and attention deficit and hyperactivity disorder (ADHD).
Another essential part of this training is helping physicians and their staff understand the communication and learning styles of children with autism. For example, they’re learning strategies for how to approach a child who has autism during a medical appointment and how to prepare, or desensitize, the child to ease potentially stressful medical routines such as taking blood pressure, performing X-rays and drawing blood samples.
Essential training materials include the broad range of Autism Speaks ATN/AIR-P tool kits for medical professionals. (Downloadable from the Autism Speaks website here.)
Our trainers also introduce “adaptive devices” that can ease the medical procedures that tend to be particularly stressful for children who have autism. Examples include a ShotBlocker or Buzzy for patients who will be receiving an injection.
Other examples of adaptive procedures include the use of headphones with calming music and having a parent demonstrate a potentially intimidating procedure before asking the child’s cooperation.
By helping primary-care providers become comfortable working with children who have autism, we know we can reduce the long wait times that result when families are instead referred on to an autism specialist.
In 2014, our two ATN centers created a workshop that enabled us to share the importance of building relationships with primary care providers and offering our training to a wider audience. Last summer, our team presented at the 2014 International Patient-Family Centered Care Conference, in Vancouver, British Columbia. And last fall, we presented at the Association of University Centers on Disabilities Annual Conference, in Washington, DC.
These conferences served as ideal platforms to share the work we’re doing and to inspire other health systems to replicate or efforts.
As moms of children with autism, we know how important a local provider is to a child’s team. It’s essential to our ATN mission to provide all families with adequate support.
We are proud to use the lessons we have learned raising our children to help make these positive changes – not only for our boys – but for all children affected by autism around the globe.
If you’d like to learn more, please contact us at ATN@autismspeaks.org.