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Ultramarathoner with autism inspiring others after crushing 100 mile goal
03:59 - Source: CNN
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 senior Washington correspondent for The Independent, the 31-year-old Garcia had grown frustrated about the lack of understanding of autism as a disorder and some of the stereotypes of people “on the spectrum.”

Eric Garcia

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

Garcia spotlights what it’s like to be autistic and presents a strong statement for self-advocacy, a growing movement among autistic individuals to articulate their own needs instead of having neurotypical people speak for them.

April is Autism Acceptance Month, and CNN recently talked 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 being 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 am a bag of nerves when it comes to getting ready to pick up the phone and call someone. It’s terrifying. (The) whole 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 loud situation – sometimes it can be overwhelming from a sensory perspective. I don’t drive, so that’s an impediment.

At the same time, I think that just in the same way that it might 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 lying or not being straight up with me. I am more inclined to ask follow-up questions until I get the (truth). I don’t think I would be able to focus as intensely on my beat or on 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 each piece if I weren’t autistic.

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

Garcia's 2021 book, "We're Not Broken: Changing the Autism Conversation," aimed to set the record straight on autism.

CNN: Why did you write a book about 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 didn’t drink because I’m on the autism spectrum and I take a drug that can’t mix with alcohol. Someone said I should write about it. I started thinking about autism at the time. Back then, people said vaccines were causing autism. About a year later, Donald Trump was saying it, and a lot of people believed what he said. Elsewhere in politics, there were just bad policies about autism. The overarching premises were to avoid autism and to avoid autistic people instead of making things easier for everyone. I had to do my part to change it and set the record straight.

CNN: What did you learn in the process of reporting the book?

Garcia: I knew about Jenny McCarthy and Jim Carrey and what they were saying about vaccines for years, but I didn’t know how deeply rooted that philosophy was. In researching this book, I learned all about the history of autism, who bankrolled 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 really know a lot about the community. I didn’t really understand myself all that well. By reporting this story, I learned more about myself.

I also had to shed a lot of my ableism toward autistic people who have difficulty speaking and recognize they are just as important as anyone else. This project forced me to shed my own bias about them. I also learned to shed the idea of high-functioning and low-functioning autistic. High-functioning people have impairments and need accommodations, and low-functioning people can do amazing things. It’s not either-or.

CNN: Why is self-advocacy so important for autistic individuals?

Garcia: For the longest time, from the 1940s to 1970s, discussions about autism were driven mostly by clinicians and psychologists – not people who were autistic. Then parents drove the discussions – in most cases, parents of autistic kids are neurotypical, so again, it was people from outside the community. The reality, I think, is that autistic people should always be included in any kind of decision-making. Many members of the autistic community feel the same degree of skepticism about Applied Behavior Analysis (a type of one-on-one therapy for people with autism that was devised and is often administered by neurotypical individuals).

A group marches this month in Cape Town, South Africa, to demand  services and support for families with children who are autistic.

CNN: How can the push toward neurodiversity in the corporate world help the autistic community?

Garcia: I think it’s great that big companies are prioritizing hiring autistic people. Including autistic people in building these workplaces is a good policy because at the very least it opens the door to greater listening of autistic people. I also think this effort is full of problems. Any person can be neurodivergent. It’s not a question of being a different “version” of normal. We should build companies around the notion that everyone deserves the opportunity to have a job. If a company is doing it right, before they start hiring people with autism, they will focus on the resources they have already and make them accessible to all neurodivergent people, not just those who are autistic.

CNN: If you’re a neurotypical person, how can you create more space to show up for your autistic friends or family members?

Garcia: It’s not difficult. You just listen to autistic people and elevate 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 speak but also those who cannot speak – literally those autistic people who are not verbal. I want to emphasize this. It’s on autistic people like myself to amplify the voices of nonspeaking autistic people. Just as I demand neurotypical people listen to autistic people, I need to demand they listen to nonspeaking autistic people, too.

CNN: How do you feel about Autism Acceptance Month?

Garcia: This subject is something the autistic community has mixed feelings about. It’s important to recognize that the whole idea of a month to acknowledge autism wasn’t 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. Women promoted what became Women’s History Month. The LGBT community created what became known as Pride. For the autistic community it was never like that.

Originally the month was known as Autism Awareness Month. It was created by people without autism, and the idea was to make sure people knew autism existed. It was as if to say, “Be on the lookout!” At least the name Autism Acceptance is more inclusive. It’s about embracing us and welcoming us and including us.

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

Garcia: From here, there needs to be a change of priorities in research and diagnosis. Right now, you see a lot of research toward biology and not toward life span. That must change. We don’t know a lot about autism and aging. We don’t know how autism manifests itself along racial lines or gender lines. We also aren’t as good at diagnosing autism in girls as we are at diagnosing it in boys.

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On a broader scale, we need to look at how our responses to crises incorporate the autistic community. Covid has disproportionately killed people with disabilities. Today we’re seeing a move to reopen the world happening too quickly, and it’s something that will hurt autistic people. Down the road, I’d like to see more autistic people having 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.

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