Eric Garcia: Changing the Autism Conversation

(Photo of Eric Garcia by photographer Kristin Herbruck)

One of the people I love most in the world is autistic. They have shaped who I am in profound ways and made my life far richer, more interesting, and even more fun. I’ve never felt that they needed to be  “cured,” even when it has been challenging to figure out how to support them best.

Neurotribes author Steve Silberman helped shift how we think about autism by sharing a well-researched historical perspective. Today’s interviewee, Eric Garcia, wrote a book that takes this conversation even further by combining his personal experience as an autistic man with his understanding of public policy as a DC-based political reporter. His book, We’re Not Broken; Changing the Autism Conversation, urges us to focus not on how autism might be “cured,” but on how we can better support autistic people so they can lead fulfilling lives. 

When did you first realize you were autistic and when did you finally accept and embrace that identity? How did you go from the kid who was bullied in school to the accomplished writer who embraces his identity as an autistic man and advocates for others?

I don't think it's as simple as going from point A to point B. These things are an ongoing process. I still deal with internalized stigma, learning what my limits and boundaries are as well as things I impose on myself or what others force on me. And there were probably moments before I arrived on the schoolyard when I was ok with myself. 

When you are a kid, you don't know anything about diagnoses from a doctor or why you even go to a doctor. Really, you care about the diagnostic labels your classmates give you and, immediately, when they see you going into special ed classes, they label you with the "r" word or as "stupid" or whatever and that makes you the subject of their ridicule. 

I first realized I was connected to a larger group of people when I saw CNN's Sanjay Gupta interview the late Mel Baggs. Even though Baggs didn't speak with their mouth, they moved like me, expressed themselves like me and stimmed like me. But really the big change came when I started writing about autism six years ago. That made me realize how interconnected our fates are and made me see autism as an individual identity.

When, how, and why did you decide to become a journalist? When did you first realize the impact you might have through writing?

I wanted to be a musician growing up, and I used to want to play guitar in a heavy metal band. So I used to buy guitar magazines all the time and read everything I could. Then my guitar teacher suggested I try getting into music journalism. Back in the day, Guitar World magazine was my favorite publication to read and they used to have this segment called "Dear Guitar Hero." One day, I submitted a question to Mick Mars from Mötley Crüe. A few months later, I saw that he answered my question. Seeing my name in print and seeing a rock star answer it was incredibly powerful. 

Later, I signed up for my high school newspaper and during the 2008 presidential election, they needed someone to watch the primary results. All the people on CNN interviewing Barack Obama, Hillary Clinton and John McCain seemed like they were having fun. So that set me on my course. I remember when I first moved to DC and met Dana Bash.  She was one of those reporters and I told her that she was a big influence on me in high school.  She joked that by saying that, I was revealing how young or how old she was.

What was it like trying to get those first jobs as an autistic person? Job interviews are tough for everyone, but I imagine they are even harder for people who struggle with social cues and small talk. How did you convince people to hire you?

That's a tough question and I want to preface it by saying that this is an intensely personal question and what works for one person, won't work for everyone. 

Initially, I didn't disclose to employers and I think it was mostly because of some internalized ableism and fear that I would be judged. I worried I wouldn't even get an interview if I disclosed that I was disabled. I didn't want people to judge me on the job. 

Once I "came out" (for lack of a better term) as autistic, it has created this self-sorting kind of thing. Has it cost me some jobs? Probably. But I will never know because the people who wouldn't hire me because I'm autistic never reached out. Conversely, employers who were open *did* reach out. At the same time, I kind of blanch at talking about the difficulty that autistic people face when doing job interviews because it puts the onus solely on the autistic person and doesn't ask employers to change. If we're ever going to fix the chronic problems of employment, employers have to change as much, if not more, than job-seekers.

What kinds of accommodations and support did you receive growing up to help you navigate school, college, life, and work? Did having a diagnosis help?

When I was in K-6, I was often taken out of classes to focus on handwriting or get help with things like math. In college, accommodations included getting more time on tests and doing them in an isolated setting. At work, it's mostly been about being allowed to wear headphones so I am not in an overwhelming environment. Having a diagnosis was instrumental to all these things. It is still insufficient and the process for obtaining accommodations is incredibly dehumanizing, as my friend David Perry has said. 

Words are your medium of choice. Do you have any ideas as to how we might move away from functioning labels when describing autistic people? (When we describe people as “high functioning,” we close our eyes to their challenges and disabilities; when we describe them as “low functioning”, we deny their strengths.). What should we use instead?

I'm not a fan of the terms since I think they flatten the experiences of every type of autistic person. The term "high-functioning" erases the legitimate needs of autistic people who can speak or hold employment. If they are high-functioning, then they must not really need *that* much help, right?

Conversely, calling someone "low-functioning" sets expectations subterranean. How can you expect anything of them? And that can lead to society not spending much money on them or providing adequate services. I tend to prefer the terms "high-support needs" and "low-support needs" because they are descriptive of what services autistic people require, rather than how the world perceives them.

What are the biggest misconceptions neurotypicals have about autism? 

I think the biggest one is that autism only affects kids. To boot, that child is often seen as a suburban white boy, which excludes women, people of color and queer people. Even the concept of autistic people being "perpetual children" ignores the fact that autistic people can and *do* grow up. That severely limits what we think of as possible for autistic people for everything --  from education and employment to the idea that they can have fulfilling relationships and enjoy a healthy sex life if they so choose. 

There's also the idea that autistic people are unempathetic. This has perpetuated the notion of the cold-hearted or even rude super-genius that you see in pop culture. But autistic people can and do care about other people's emotions, even if they can't understand them immediately. 

The last one is that autism is a problem that needs to be ameliorated, rather than a group of people who deserve rights and need the world to be made more accommodating.

How can neurotypicals be better allies? What should we be pushing for in terms of both culture change and concrete policies?

Listen to autistic people. 

That's the main thing I would say. Autistic people are always in a precarious predicament because if they are nonspeaking, have an intellectual disability, or require higher supports, their needs are immediately discredited because people wonder how could they possibly understand what they want. 

You see this with transphobes like JK Rowling warning about autistic people being forced into being transgender. Aside from the rank transphobia behind the idea that transgender people are trying to secretly trick people, it also discredits transgender autistic people's agency. 

On the flip side, when people like myself speak up, parents often say “you are not like my child" or "neurodiversity excludes kids like mine." In truth, I have more in common with their child than they realize and I want that child to have all the same rights and protections I do. 

If you could travel back in time, what advice would you give to your 17-year old self? 

I’d say that you think you are alone, but you're not. Just how you found solace in metal music, there are millions of other people who are like you and even though we might all be different permutations of autistic, we are bonded by this common thread. This common thread will help you navigate your own identity and give you a community, which is what you crave because you don't feel like you belong in any niche area.

Thank you, Mr. Garcia!