IIn 2006, Congress passed the Autism Fighting Act. As President George W. Bush signed the bill, he said, “I am proud to enact this bill and I am confident that it will serve as an important foundation for our nation’s efforts to find a cure for autism.” The bipartisan passage of the bill came a year after Bob and Suzanne Wright founded Autism Speaks in response to their grandson Christian’s diagnosis of autism. Autism entered the public discourse and became a mobilization element of the elites. But that boost hasn’t improved the lives of autistic people.
I know because as a teenager in Southern California I grew up with what was then known as Asperger’s Syndrome and absorbed all of these messages about autism. I remember seeing an ad as a teenager who loved rock and roll and heavy metal panicking Tommy Lee of Motley Crue and Roger Daltrey of The Who about the frequency of diagnoses of autism in children . Kiss’s Gene Simmons warned in the same ad that it affects more children than childhood cancer, type 2 diabetes and cystic fibrosis combined.
Of course, autism is not a fatal disease like any of these other diseases, and the rise in diagnoses has been caused by improvements in both diagnostic criteria and public policy. There were more cases because we were looking for more cases. Even so, this moral panic spread that bad faith actors like Dr. Andrew Wakefield and former model Jenny McCarthy opened the door to play off people’s fears of vaccines on the basis of false claims. While the proponents of a cure for autism weren’t as pernicious as the anti-Vaxxers, they were rooted in the same pernicious idea: that autism must be eradicated, and therefore autistic people were somehow harmed individuals.
In the 15 years since the Combating Autism Act was signed, there is little evidence that efforts to cure autism have borne fruit that has improved our lives. Even though Autism Speaks and other organizations have stopped focusing on a “cure”, much of the research continues to focus on the causes and risk factors. According to the Interagency Autism Coordinating Committee’s Portfolio Analysis Report, both public and private entities in the United States spent $ 387,680,492 on autism research in 2018, including public and private donors. That year, 42 percent of research funding was spent on biology, 19 percent on risk factors, and 13 percent on treatments and interventions. Conversely, only six percent of the money was spent on researching services and half of that was spent on lifespan questions.
Studying biology isn’t inherently bad, but focusing and spending so much on what causes autism at the expense of learning what can improve the lives of autistic people today shows how our society has misplaced priorities. The spending reflects values and at the moment it is clear that the needs and wants of autistic people are not being heard clearly.
And that’s not because there is a lack of research into the life expectancy of autistic people. Many autistic people still struggle to find employment – a study showed that autistic people in their early 20s had a lower employment rate than their disabled peers – not to mention autistic people who are undiagnosed or later diagnosed, which is often The case is for women, femme-presenting and people of color. Similarly, it is separated from legitimate health needs, such as that epilepsy is the greatest killer of autistic people with intellectual disabilities, while people without intellectual disabilities are also at risk of dying from circulatory diseases such as heart disease or suicide. Similarly, many autistic people I interviewed for my book deal with homelessness and poverty while others do not have access to programs like Supplemental Security Income because they are not “disabled enough” even if they have difficulty getting a job to find.
All of these problems illustrate how often society disables autistic people as much as autism itself – and that I am not misinterpreted, autism is, in fact, a disability with impairments. But failure to address this will continue to make daily life insurmountable for autistic people.
Fortunately, in the years since then, a new generation of autistic advocates has started articulating their needs. The Spectrum Generation was diagnosed as a criterion for autism in the Mental Disorders Diagnostic and Statistics Handbook, which was expanded in the 1980s and 1990s, and benefited from the promise of free adequate public education contained in the Disabled Education Act is guaranteed. Those two factors failed to fully deliver on their promises – many diagnoses were lumped into the larger framework of Autism Spectrum Disorder, while the federal government did not fully fund promised disability education spending. But these initiatives gave this generation (of which I belong) their first experience of rights and a better understanding of themselves.
Today these autistic people demand that they influence the policies that determine their future. The Combating Autism Act was later renamed the Autism Cares Act when it was re-approved in 2014 and re-authorized in 2019. Similarly, when appointing new members to the IACC, the full range of autistic people was considered, including minimally speaking people like Hari Srinivasan and people with intellectual disabilities like Ivanova Smith.
The ability of autistic people to determine our own destiny is only as good as the choices we are given as a direct result of political choices and culture. You deserve to help shape this decision-making process. In return, autistic people are calling on the world to lay down their arms and make peace with us.
Sign up for Inside TIME. Be the first to see the new cover from TIME and get our most exciting stories straight to your inbox.
Thanks very much!
For your security, we have sent a confirmation email to the address you entered. Click on the link to confirm your subscription and receive our newsletter. If you do not receive a confirmation within 10 minutes, please check your spam folder.
Comments are closed.