It wasn’t too long ago that high-level political figures couched autism as a disease that needed to be cured or eliminated, as opposed to a disability society needed to accommodate.
Take Hillary Clinton: During a speech in 2007 on the heels of her first presidential run, the then-Democratic senator said, “We have to continue on the track of greater research and understanding, where we get to a point where we prevent and cure anything along the autism spectrum.”
As journalist Eric Michael Garcia explains in his book, "We’re Not Broken: Changing the Autism Conversation," that sort of rhetoric fell by the wayside when autistic people like himself became more aggressive at articulating needs to powerful political figures. It’s part and parcel with the central tenet of his book about the disability that can affect a person’s ability to communicate and interact socially: Autistic people should lead the conversation about what autistic people want, not people who speak for them.
“Politicians are only as good as the information that gets to them,” Garcia said in an interview this week with St. Louis Public Radio that was part of an event with Left Bank Books.
Garcia notes that parents, researchers and clinicians were the primary advocates for autistic people for most of the 20th century. But that began to change when younger people who faced more opportunities because of factors such as the Americans with Disabilities Act started showcasing their power to political parties.
One example of this is when autistic people joined a coalition of disability rights advocates in protesting the potential repeal of the Affordable Care Act in 2017. Garcia said that caught the attention of Democratic political figures.
“What happened is that gave them a lot of political cachet among Democrats, because they were seen as the people who were protesting in front of Mitch McConnell’s office,” Garcia said. “They were seen as the people who in many ways saved this landmark piece of Democratic legislation.”
Garcia’s book gives voice to a diverse group of autistic people who note how the disability could be perceived differently based on race, gender or where someone falls on the spectrum. He pushes back especially against the idea that people with lower support needs don’t need as much accommodation as autistic individuals with high support needs.
And while Garcia stresses that family members and people with autism often share interests, he added that parent-driven autism organizations are finding that “autistic people are speaking out and saying where there are holes in their arguments.”
“I think a lot of autistic people who previously weren't being consulted now have the means and the political capital to speak out,” Garcia said.
Vaccine falsehoods affecting COVID-19
Garcia’s book also draws a line between the discredited and false idea that vaccines cause autism to the hesitancy around the COVID-19 vaccine.
He notes that in the 1990s, it was a somewhat mainstream position to believe there was some connection between autism and vaccines. He points out how powerful politicians like Sen. Tom Harkin of Iowa asked pointed questions about the topic in a 2009 committee hearing.
“What was especially shocking about Harkin asking these questions was that he was the chief sponsor of the Americans with Disabilities Act,” Garcia wrote in the book. “Harkin’s history as a disability advocate — he delivered a floor speech in sign language upon the act’s passage in 1990 — implies he was not acting maliciously. Rather, as a policymaker, he was echoing his constituents who had asked him about the vaccines.”
Garcia said many became convinced of the link between vaccines and autism thanks to people like Andrew Wakefield, a former physician who later had his paper on the topic revoked.
“He did what a lot of conspiracy theorists do,” Garcia said. “He offered a really simplistic solution to a very nuanced and complex answer. It’s also important to remember that up until the 1970s, parents were blamed for autism.”
“It placed blame on somewhere else, when really there was no one to blame,” he added. “People were just being born.”
Even though people like Wakefield have been roundly discredited, Garcia contends his ideas sowed the seeds of misinformation and distrust about the COVID-19 vaccines.
“It laid the groundwork,” Garcia said. “There is this weird almost singularity of conspiracism and sowing of doubt and all this kind of misinformation that I don’t think you would have seen if you had not seen that initial push in fear.”
But Garcia sees progress. He said that in the 2020 election, presidential candidates like Pete Buttigieg said: “We’re seeing an increased prominence in autism because more people are open and being more candid about it.”
“That is in a span of 11 years that you see a seismic shift in how political rhetoric could change,” Garcia said.
Follow Jason on Twitter: @jrosenbaum
