Autism is poorly understood. ‘We Are Not Broken’ author becomes self-advocate to change that – KION546

By Matt Villano, CNN

Write about what you know. That’s why Eric Garcia wrote his 2021 book, “We’re Not Broken: Changing the Autism Conversation.”

As an autistic individual reporting on politics as a senior Washington correspondent for The Independent, Garcia, 31, had grown frustrated with the lack of understanding of autism as a disorder and some of the stereotypes of autism. people “on the spectrum”.

He set out to humanize autism by explaining its history, cataloging the lack of support for neurodivergent people, and shining a light on autistic people of all kinds.

Garcia shines a light on what it’s like to be autistic and presents a strong statement in support of self-advocacy, a growing movement among autistic people to voice their own needs instead of neurotypical people speaking for themselves.

April is Autism Acceptance Month, and CNN recently spoke with Garcia about the current state of the autism community and how society can become even more inclusive.

This conversation has been edited and condensed for clarity.

CNN: What’s it like to be autistic?

Eric Garcia: I was diagnosed when I was 8 or 9, so autism has been part of my identity for most of my life. I don’t know if it makes me better or worse at my job. It makes me a different journalist. I’m a bag of nerves when it comes to getting ready to pick up the phone and call someone. It’s terrifying. (The) very idea of ​​calling someone on the phone terrifies me. At other times, being in a situation where I’m covering a rally – being in a noisy situation – sometimes it can be overwhelming from a sensory perspective. I don’t drive, so it’s an obstacle.

At the same time, I think in the same way that it could be sensory hell for me to interview someone because I can’t read their facial expressions, because I’m autistic, I can tell when someone is either lying or not straight with me. I’m more inclined to ask follow-up questions until I get the (truth). I don’t think I would be able to focus so intensely on my pace or special interests if I weren’t autistic. I also don’t think I would put all the care and focus and research that I do into every piece if I weren’t autistic.

There are definitely obstacles that autism creates for me. I don’t want to erase them. Autism is a disability that comes with impairments. I think neurotypical people also have certain deficiencies that they have to overcome: politeness, the desire to be liked, things like that. I don’t think I would be the same journalist I am today if I weren’t autistic.

CNN: Why did you write a book on autism?

Garcia: The book was a response to an experience I had in 2015. I was at a party and someone asked me if I wanted a drink. I said I hadn’t been drinking because I’m on the autism spectrum and taking a drug that can’t mix with alcohol. Someone said I should write about this. I started thinking about autism back then. At the time, people said vaccines caused autism. About a year later, Donald Trump was saying it, and a lot of people believed what he was saying. Elsewhere in politics, there were only bad policies on autism. The overriding premises were to avoid autism and avoid autistic people instead of making it easier for everyone. I had to do my part to change it and set the record straight.

CNN: What did you learn from bringing the book back?

Garcia: I had known Jenny McCarthy and Jim Carrey and what they said about vaccines for years, but I had no idea how deeply rooted that philosophy was. While researching this book, I learned all about the history of autism, who funded the original studies, and how we came to understand a little more about what autism is and how different people experience it. differently. Learning all this was interesting for me. I didn’t know much about the community. I didn’t really understand myself very well. By telling this story, I learned more about myself.

I also had to let go of a lot of my ableism towards people with autism who have difficulty speaking and recognize that they are just as important as anyone else. This project forced me to get rid of my own prejudices about them. I also learned to let go of the idea of ​​high-functioning autism and low-functioning autism. People who function well have disabilities and need accommodations, and people who function poorly can do amazing things. It’s not either-or.

CNN: Why is self-advocacy so important for people with autism?

Garcia: For a very long time, from the 1940s to the 1970s, discussions of autism were led primarily by clinicians and psychologists — not autistic people. Then the parents led the discussions – in most cases parents of autistic children are neurotypical, so again it was people from outside the community. The reality, I think, is that people with autism should always be included in any type of decision-making. Many members of the autistic community feel the same degree of skepticism toward applied behavior analysis (a type of individual therapy for people with autism that was designed and is often administered by neurotypical people).

NC: How can the corporate push for neurodiversity help the autism community?

Garcia: I think it’s great that big companies are prioritizing hiring people with autism. Including autistic people in the construction of these workplaces is good policy because it at least opens the door to more autistic people being heard. I also think that this effort is full of problems. Anyone can be neurodivergent. It’s not about being a different “version” of normal. We should build businesses around the notion that everyone deserves the opportunity to have a job. If a company gets it right, before it starts hiring people with autism, it will focus on the resources it already has and make them accessible to all neurodivergent people, not just those with autism.

NC: IF you are a neurotypical person, how can you create more space to present yourself to your autistic friends or family members?

Garcia: It’s not difficult. You just listen to people with autism and raise their voices. These are the same things that every marginalized group in America has demanded. We deserve to be treated with dignity. With autism, it’s important to listen to those who can talk but also those who can’t – literally those autistic people who aren’t verbal. I want to emphasize this. It’s up to autistic people like me to amplify the voices of autistic people who don’t speak. Just as I demand that neurotypical people listen to autistic people, I must also demand that they listen to autistic people who don’t speak.

NC: What do you think of Autism Acceptance Month?

Garcia: This topic is something the autistic community has mixed feelings about. It is important to recognize that the whole idea of ​​A Month to Recognize Autism was not created by autistic people – it was created by neurotypical people. Carter Woodson (who was a black man) created what became known as African American History Month. The women promoted what became Women’s History Month. The LGBT community created what became known as Pride. For the autistic community, it has never been like this.

Originally, the month was known as Autism Awareness Month. It was created by non-autistic people, and the idea was to make sure people knew about autism. It was like saying, “Be on the lookout!” At least the name Autism Acceptance is more inclusive. It is about embracing us, welcoming us and including us.

CNN: What’s the next big hurdle for the autism community?

Garcia: From there, we must change the priorities in terms of research and diagnosis. Right now you see a lot of research on biology and not lifespan. This must change. We don’t know much about autism and aging. We don’t know how autism manifests along racial lines or gender lines. We are not as good at diagnosing autism in girls as we are in boys.

On a larger scale, we need to consider how our crisis responses integrate the autism community. Covid has disproportionately killed people with disabilities. Today we are seeing a movement of reopening the world happening too quickly, and this is something that will hurt people with autism. In the future, I would like to see more autistic people being given the opportunity to speak for themselves and more and more neurotypical people listening to autistic people. Neurotypical people just need to make the effort to listen.

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Matt Villano is a writer and editor in Healdsburg, California.

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