Dear Ms. Lutz,
On behalf of the Association for Science in Autism Treatment (ASAT), we would like to thank you for your article, “Making Severe Autism Visible,” which outlines two upcoming projects aimed at disseminating information about some of the struggles individuals with autism and their families face on a daily basis. As you stated, individuals severely affected are commonly misrepresented in the media, if discussed at all, and we commend you for attempting to “advance this dialogue,” particularly related to more serious behaviors like aggression and self-injury. Unfortunately, the misrepresentations of people with intellectual and developmental disabilities leads to confusion amongst the most important political decision -makers and educational professionals responsible for implementing and changing policies which impact the treatment of those affected and their families.
ASAT is committed to disseminating accurate, evidence-based information to a variety of audiences such as parents, professionals, and the media. As you clearly pointed out in your article, the media tend to highlight “success stories” about some of the most capable individuals diagnosed with autism, which may inadvertently minimize the daily struggles many other families face when impacted by behaviors such as elopement, pica, self-injury, aggression, and property destruction. By promoting discussion about these severely challenging behaviors, you open the forum for families going through these situations to feel understood, and for the public looking from the outside in a chance to understand.
As common as misrepresentations of individuals with autism are, so are misconceptions about effective therapies, and often times valuable time, money, and resources are spent on ineffective methods. Our autism treatments page outlines many effective and ineffective approaches in an attempt to promote evidence-based practice, and put individuals with autism in touch with more effective strategies such as those based on the principles of Applied Behavior Analysis. The outcomes of treatment vary across all individuals, because autism is a large spectrum and individuals have such a range of skills and deficits, but this is why services throughout one’s lifetime should be individualized.
The book titled, “Immersed: Our Experience with Autism,” by parents Bruce and Valerie Hall, as you stated, use narratives and pictures to share their experience as parents of twin sons with severe autism to support other families in similar situations. The authors hope to help the general population understand severe autism through their lens. We are hopeful that treatments of the severe problem behavior described in the trailer will be discussed in the book to help promote sound, effective therapies with a foundation in science to support and guide the decision making of families.
After watching the trailer, “Aging Out” by filmmaker and parent Melissa Colins-Porter, we appreciated devastating points made about the lack of services provided to individuals with autism when they reach the age of 21. Many will require a lifetime of significant care, and as one of the speakers in the trailer pointed out, “It’s every family’s dream to thrive, not to just survive.” The need for effective services, with a commitment to science, are desperately needed in the adult autism community. As time goes on, more and more individuals are graduating from a richer education to a complete lack of services and this, unfortunately, adds to the stress of families. The challenge is a lack of funding for adult programs and limited human resources of professionals with adult expertise. Our Lifespan page provides resources pertaining to increasing independence, preparing for employment, facilitating community participation, and serves as a general guide for parents and individuals with autism navigating and preparing for life after school.
We are hopeful that our organization, complete with resources on effective strategies and founded on the principles of science, in conjunction with writers like you, will be part of the movement to disseminate accurate information to those in and out of the autism community. Ideally, this will effect policymaking, treatment outcomes, and help bridge the gap between the individuals with autism and their families and the general public.
Sincerely,
Briana Tingler, MA and David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment
