Follow-Up on the House Committee Hearing on Autism

Content Warning: Discussions of vaccine-causation, presumptions of incompetence, silencing of Autistic people

I wrote this for the ASAN December Newsletter, which can be found here.

On November 29, 2012, the House Committee on Oversight and Government Reform held a hearing on the federal response to issues related to autism. Initially, there had been no Autistic witnesses invited to testify on this, nor had there been any representatives of organizations founded and run by Autistic people. This initial lack of input from Autistic people was concerning and generated considerable response. Following this response from the community, two Autistic witnesses were invited: Ari Ne’eman of the Autistic Self Advocacy Network, and Michael John Carley of the Global & Regional Asperger Syndrome Partnership.

The stated purpose of the hearing was to get a clearer picture of what is being done for Autistic people, what has yet to be figured out, and what needs Autistic people and their families have. Ari Ne’eman noted that despite the large budget for autism research, very little research is done into improving services for Autistic people and their families, with only 1.5% of the National Institutes of Health funding for autism research dedicated to assessing or meeting the needs of Autistic adults. He called for an increase in funding for research that will actually improve the quality of life and the ability to communicate for Autistic people. In fact, both Autistic witnesses noted the current imbalance in research and the need to use research money on projects that can improve support for Autistic people, rather than exploring issues related to causation. Mr. Ne’eman noted that if even a tenth of the budget currently allotted to researching causation were available for communication needs, non-speaking Autistic people would have greater access to Alternative and Augmentative Communication (AAC), allowing them to communicate their own wants and needs, both to Congress on their own behalf and to their family and service providers on a daily basis.

Also discussed were issues that can interfere with diagnosis, such as the possibility that the gender imbalance in diagnoses may be a self-fulfilling prophecy, wherein girls do not fit the stereotypical idea of autism and therefore go undiagnosed. Additionally, Autistic people of color are generally diagnosed later in life than Autistic Caucasians, and middle to upper class Autistic people are diagnosed earlier than Autistic people from low-income families. As a diagnosis is required for most relevant services, the disparity in diagnosis is a significant difficulty in making sure that Autistic people and their families get the supports they need.

In response to talk of autism as an “epidemic” and a “tragedy,” both Autistic witnesses had responses. Mr. Ne’eman noted that it is more than possible to determine if the rate of autism is even actually rising, questioning the factual accuracy of the “epidemic” language. Research into determining the rate of autistic spectrum disorders in adults as the criteria are currently interpreted can be done and, if the rates are similar to the rates among children, then the term “epidemic” is inaccurate as well as disheartening. He noted that a recent study in Britain suggests that the rates may, in fact, be similar, with findings that approximately 1% of British adults are Autistic. Mr. Carley of GRASP chose to mention that Autistic people generally can understand what is said in front of them and read what is written about them, noting that hearing such terrible things about yourself as being called a burden, a tragedy, or an epidemic can contribute further to our often too-low self-esteem, and that everyone needs to hear about what they cando as they grow, not just about what they can’t do. The hearing demonstrated that while there is much funding for research, the funding for services, for improving services, and for helping Autistic people communicate are all insufficient, and that the voices of Autistic people are urgently needed in the discussions of how to fix these insufficiencies.