· October 2 ·
The Autism CARES Act was officially signed into law by President Trump.
This is not good news for the autistic community, but Autism Speaks and the Autism Society of America, both harmul “autism charities” who have little to no autistic people involved in their organizations, lobbied heavily for Autism CARES and are celebrating its passage.
The Autism CARES Act of 2019 is a reauthorization of existing legislation and was formerly called the “Combating Autism Act.” Because autistic activists and the Autistic Self Advocacy Network were very vocal about their opposition about the name and the intent of the legislation to “combat” autism with the hashtag #StopCombatingUs, the name of the bill was changed to Autism CARES in 2014, but the actual intent of the legislation to “combat” autism has not changed at all since 2006. An amendment to improve autistic representation in research about autism introduced by Rep. Jan Schakowsky (D-IL) that would have been added in 2014 was shut down in Congress due to lobbying by Autism Speaks for more cure and treatment research.
The reauthorization of Autism CARES provides $1.8 billion in funding for autism programs at the Centers for Disease Control and Prevention, National Institutes of Health, and the Health Resources and Services Administration. The National Institutes of Health has gotten a majority of the funding for every reauthorization period of Autism CARES. In the Combating Autism Act 2006 budget, $960 million out of $1.2 billion, or 81% of the funding, went to the National Institutes of Health. $77 million went to the CDC, or 6.5%, and only $48 million, or a little over 4%, went to the Department of Education. In 2010, only 2.4% of the NIH research went towards services related research for autistic people, and only 1.5% went to research on the needs of autistic adults, and these figures have not changed much since 2006.
This bill has bipartisan support and was sponsored by Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA). President Bush and President Obama also signed reauthorizations of Autism CARES or the “Combating Autism Act.” That being said, because Trump is good friends of Bob Wright, co-founder of Autism Speaks, he likely influenced Trump into signing Autism CARES. Trump happily tweeted after signing the bill, “Today, I was proud to sign the Autism CARES Bill! We support research for Americans with Autism and their families. You are not forgotten, we are fighting for you!” No, you are fighting to cure and treat us. You are not fighting for us, you are fighting autism. That is what this bill has always been about, “combating” autism.
There are a few positive changes since the last reauthorization period of Autism CARES. One is that for the first time, the Department of Health and Human Services will provide a report to Congress on the well being of autistic people of all ages. The phrase, “Across the lifespan” will also be added in several parts of the legislation to acknowledge that autistic adults exist and that autistic children grow up to become autistic adults. But if they really wanted to acknowledge that, lawmakers would have spoke to autistic adults about the legislation. But no autistic people were involved in the drafting of this legislation. The Autistic Self Advocacy Network was not involved or consulted when drafting this legislation. No autistic adults were consulted about their needs. We were shut out in legislation about us.
Ironically, Autism CARES does not care about the autistic community. It does not care about our involvement. It only “cares” about combating us, just like in the past. The Autism CARES Act needs to be reformed to provide grants for AAC devices for autistic people who communicate differently, more of the budget needs to be allotted for the Department of Education and transition services for autistic adults, and funding for housing options, affordable healthcare, and higher education should also be priorities for Autism CARES. Let’s hope in the next reauthorization period of Autism CARES, we are listened to and involved.
Read the press release of the passage of Autism CARES
Read my own research about Autism CARES
Read the The Autistic Self Advocacy Network’s statement on Autism CARES here from 2014:
Language of Autism CARES Act of 2019
Note: I photoshopped the A$ and NIH logos in this picture to depict their involvement with Autism CARES. Here is a link to Trump’s original tweet: