Last fall, President Obama signed the Combating Autism Reauthorization Act, which ensures that Federal autism research and services programs will continue without disruption. The act also directs the Interagency Autism Coordinating Committee (IACC) to continue charting a course for autism spectrum disorder research while simultaneously advancing the delivery of needed services.
Shortly after the act was signed, I received a call asking if I’d agree to be nominated to serve on the Committee. I agreed. Yesterday, I received the news of my appointment by HHS Secretary Kathleen Sebelius.
Read the official release here
As a member of the IACC I will do my best to encourage research into tools, therapies, or treatments that will help remediate autistic disability in all its many and varied forms. I’m keenly aware of the breadth of the autism spectrum, and the very different needs and issues of our community members. I will do my best to advocate for all autistic people.
Those of you who follow me online know that I’ve served on public and private autism science boards for several years. This appointment represents an opportunity to continue that work at a different level and I am honored to have been chosen.
IACC is also involved in planning the delivery of autism services, and I know that’s an area of great concern. I grew up as an autistic person in a time when people like me didn’t receive many services. I have a son, now 21 years old, who grew up with Asperger’s in a more aware era. Those experiences will inform me as I work with other IACC members to best structure and allocate our service resources.
In the past, people have asked my stance on neurodiversity and some people’s expressed desire for an autism “cure.” I’ve written quite a bit about that over the years but I’d like to restate those views briefly here.
I support the idea that the world needs a diverse pool of thinkers, some of whose minds may be rather different from the norm. I take pride in being one of those non-standard individuals. In my life, I’ve seen many instances where my “different” brain allowed me to solve problems others failed to unravel. That’s the good side of difference. At the same time, I have experienced disability while watching others succeed at common life tasks that I could not complete, or completed only with difficulty.
My life experience has shown me both sides of being different. I celebrate people who succeed by being unique, while supporting the development of tools to help us in the areas where we struggle, and allow more of us to live independent and productive lives.
I believe all people deserve to be treated with respect. I’m very concerned by the growth of both online and schoolroom bullying, and I want to see more and better accommodation for autistic people in schools and workplaces.
When it comes to calls for an “autism cure,” I should first say that I strongly support all work that remediates autistic disability. For some that might be speech therapy. Others struggle with social skills, loneliness, and chronic unemployment. The ways in which autism disables us are many and varied and I support research to mitigate all those things.
Autism is a crushing disability for many people, and I strongly support research that will relieve that burden to autistic individuals, families, and society. I know it’s easy to look at autistic people like me, and draw wrong conclusions as to the true burden autism places upon the average person. As much as I celebrate diversity, I cannot celebrate any condition that prevents a person from living independently, forming relationships, and joining society in a productive manner. With the CDC’s announcement of its newest prevalence data the need to achieve this goal is even greater than before.
I support genetic research that helps us understand the foundations of autism and thereby leads to better treatment and improved quality of life. I’m aware of the controversy regarding the possible future development of prenatal tests for autism, but I do not let those concerns blind me to the vast potential genetic research offers to autistic people living today.
Though I strongly support the goal of remediating autistic disability, I am opposed to the particular phrase “curing autism” because that implies ridding the world of people like me. I’m all for curing disability, but autistic people – in our many forms – are essential to humanity’s success and I celebrate our present and future existence.
When an autistic person hears outsiders call for a “cure for autism” he or she often takes that as a personal attack, just as a Jewish person would be offended by a call to “rid the world of Jews.” I’m sure many who call for a cure do not understand that autistic people see their words that way; I hope greater awareness will result in a recognition that we are entitled to a rightful place in the world, without hiding our place on the spectrum, even as we hope and strive to live our lives free of disability.
When I talk to mothers and fathers who say, “I wish I could cure my son’s autism,” and I explore that phrase with them, I most often find we want the same thing. We want a person who grows up comfortable, happy, productive, free of suffering, and able to engage humanity and the world as he or she chooses. We have a long way to go in reaching that goal, but I am confident we are making meaningful progress.
I hope my service on the IACC helps us attain some of those shared goals.
John Elder Robison
In the words of the IACC website,
Objectives and Scope of Activities
The Committee will (1) develop and annually update a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or ruling out a diagnosis; intervention, and access to services and supports for individuals with autism spectrum disorder; (2) monitor Federal activities with respect to autism spectrum disorder; (3) make recommendations to the Secretary of Health and Human Services (Secretary) regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan; (4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder; (5) develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements; and (6) submit to the Congress such strategic plan and any updates to such plan.
Description of Duties
The Committee will coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder to combat autism through research, screening, intervention and education. The Committee's primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, and to coordinate autism-related programs and initiatives. The Committee will serve as a forum and assist in increasing public understanding of the member agencies' activities, programs, policies, and research, and in bringing important matters of interest forward for discussion.