Eric Garcia’s outstanding book, “We’re Not Broken: Changing the Autism Conversation,” highlights how a lack of input from autistic people “can perpetuate stigmatizing ideas about autism,” which leads to his call to include autistic people in the conversations that concern them. As an autistic mother of autistic children, I couldn’t agree more with the main argument of Garcia’s book: “Society should stop trying to cure autistic people and instead help autistic people live fulfilling lives.” In the same vein of Steve Silberman’s “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” Garcia’s book uses rich storytelling and insightful reporting to uncover not only the long history of how autistic people have been mistreated but also how they continue to be ignored.
Garcia has the unique perspective of a journalist who is also autistic. Based in Washington, he has worked at The Washington Post, National Journal, Roll Call and the Hill. Seamlessly weaving his own experience with profiles of autistic people in cities coast to coast, Garcia has accomplished what he set out to do — to write a “book showing exactly what it was like to be autistic across America.”
In a chapter on public policy, Garcia interviews Pennsylvania’s Jessica Benham, the first openly autistic woman elected to a state legislature. He traces historical changes in the diagnostic criteria for autism alongside shifts in public policy, including the signing of the Americans With Disabilities Act and the Individuals With Disabilities Education Act. Detailing the harmful history of narratives that “paint autism as tragic,” Garcia shows how autistic people were systematically left out of conversations that related to them and were even told that they should be wiped out.
When he was a teenager, Garcia writes, he saw a public service announcement on VH1 starring his favorite metal-band musicians from Mötley Crüe, Kiss, Led Zeppelin and Black Sabbath calling for an end to a mysterious disease plaguing children: autism. This sentiment, Garcia shows throughout his book, continues today even if the delivery methods have changed, in the form of “anti-vaccine quackery” that has hit autistic people hard. The majority of research funding is still spent on finding a cure for autism rather than improving the lives of autistic people.
In his chapter on health care, Garcia compares the undesirable medical model — identifying autism as the problem — with the desirable social model: the need to accept autism. Sadly, autism advocacy often pits autistic self-advocates against parents advocating for their autistic children. They often disagree on whether autism is a disorder or a difference, what causes autism, and how, if at all, to treat it. As both a self-advocate and an advocate for my autistic children, I find myself caught in the middle of these groups that don’t seem to want to talk to each other.
As Garcia notes, the divide between self-advocates and parents is perhaps biggest when it comes to the treatment of autism, specifically applied behavior analysis (ABA). Self-advocates often criticize ABA for trying to make autistic people act the way society perceives as normal, while many parents say that their autistic children wouldn’t be able to function without this behavioral intervention. My main critique of his book is the lack of rigorous reporting or discussion of treatments for autism, especially alternatives to ABA. The call to change the autism conversation about health care should investigate in depth the issues that have divided many autistic people and caretakers of autistic people, in hopes of finding common ground.
Garcia’s gender and race chapters are a fresh take on how the autism conversation should be more inclusive. “Autism has been viewed as something that exclusively affects cisgender boys and men,” writes Garcia, which means that girls, women, trans and nonbinary people are often underdiagnosed and ignored. He highlights how autistic people of color are overlooked because of the perception that autism is a White condition.
Garcia also demonstrates his inclusiveness by interviewing autistic people across the spectrum of high and low support needs. He convincingly shows that no matter where autistic people fall on the spectrum, their differences are not as wide as one might think, and they share more in common with one another than neurotypical people.
While Garcia’s call to change the autism conversation is relevant to all who have a general interest in autism, the book focuses on the lives of autistic adults. Drawing on his experiences and interviews of mainly autistic adults, he explores matters from college education to independent housing to employment to romantic relationships.
As a late-diagnosed autistic adult, I often struggled to navigate these life experiences because I wasn’t aware of my differences. I wish I’d had Garcia’s book when I was a young adult. Then, I would’ve known how accommodations could have helped me succeed in my early college days, understood why I had trouble living independently, learned why I was uncomfortable in job interviews and accepted my difficulties with dating.
“We’re Not Broken” is exactly the book we need to lead the way in changing the autism conversation. It belongs on the shelf next to “NeuroTribes” as essential reading on autism and neurodiversity.
We’re Not Broken
the Autism Conversation
By Eric Garcia
304 pp. $27