EIL: Everything I've Learned

Eric Michael Garcia on What It Means to Be #ActuallyAutistic

October 06, 2021 Mark Armstrong Season 1 Episode 5
Eric Michael Garcia on What It Means to Be #ActuallyAutistic
EIL: Everything I've Learned
More Info
EIL: Everything I've Learned
Eric Michael Garcia on What It Means to Be #ActuallyAutistic
Oct 06, 2021 Season 1 Episode 5
Mark Armstrong

Eric Michael Garcia is an autistic journalist whose new book is We’re Not Broken: Changing the Autism Conversation.

Garcia is the senior Washington correspondent for The Independent, following editorial roles at the Washington Post and The Hill. He’s also been a correspondent for National Journal, MarketWatch, and Roll Call, and has written for The Daily Beast, The New Republic, and Salon.com

As a child, he was diagnosed with Asperger’s Syndrome, which is now diagnosed under the broader ASD (autism spectrum disorder). We talked about the history of the autism diagnosis, how it has evolved, how the language around it has changed, and how autistic people are using social media (like the #ActuallyAutistic hashtag on Twitter) to speak out in a media ecosystem that historically marginalized or ignored them.

Related links: 

Support the Show.

Show Notes Transcript

Eric Michael Garcia is an autistic journalist whose new book is We’re Not Broken: Changing the Autism Conversation.

Garcia is the senior Washington correspondent for The Independent, following editorial roles at the Washington Post and The Hill. He’s also been a correspondent for National Journal, MarketWatch, and Roll Call, and has written for The Daily Beast, The New Republic, and Salon.com

As a child, he was diagnosed with Asperger’s Syndrome, which is now diagnosed under the broader ASD (autism spectrum disorder). We talked about the history of the autism diagnosis, how it has evolved, how the language around it has changed, and how autistic people are using social media (like the #ActuallyAutistic hashtag on Twitter) to speak out in a media ecosystem that historically marginalized or ignored them.

Related links: 

Support the Show.

Eric Michael Garcia: There's no right or wrong way to be autistic. I think for a long time, I wasn't connected or plugged in to the community, and I often wondered if I was being autistic quote-unquote, “the right way.” I didn't know all these things. And later on what I realized is that there's no right or wrong way to be autistic.

Mark Armstrong: Hi, everybody. This is Everything I've Learned, a podcast about lessons, mistakes, and turning points. I'm Mark Armstrong, founder of Longreads, and today's guest is Eric Michael Garcia, an autistic journalist and author of the new book We're Not Broken: Changing the Autism Conversation. I really love this book, and we had a great conversation about the history of the autism diagnosis, how it's been misunderstood over the years, and how the #ActuallyAutistic hashtag on social media has allowed autistic people to speak out for neurodiversity and disability rights in a media ecosystem where they've been previously marginalized or ignored.

As a child, Eric was diagnosed with Asperger's Syndrome, which is now diagnosed under the broader autism spectrum disorder. His book started to take shape after he wrote an essay for National Journal in 2015 on what it's like to be an autistic journalist in Washington, D.C. Eric is now the senior Washington correspondent for The Independent, and previously he was an assistant editor at the Washington Post’s Outlook section, and an associate editor at The Hill, as well as correspondent for National Journal, MarketWatch, and Roll Call.

Thanks again for giving this podcast to listen. If you like the show, give us a rating and a comment in Apple Podcasts. You can also tell me about something you've learned by leaving me a voicemail. Go to EIL.show/voicemail. And in fact, we already have our first voicemail and it's from Ken Otterbourg:

Ken Otterbourg: So last year during the pandemic, my girlfriend and I started a little jam company, and we put on the label suggestions for a happy life: Look at the sky. Make art. Read, walk, laugh, love. Seek justice. Be kind to yourself, to others, and to the planet. Learn about birds. Work hard, play harder. Clean less. Know which way is north. Get a dog. Thank someone every day. Call your friends. Build a fire. Tell the truth. Listen to others. Listen to yourself. When in doubt or trouble, always eat jam. 

That about does it. 

Mark Armstrong: So that's it. That's how the voicemails work. Thanks again, Ken, for sharing your jam wisdom. Um, so who's next? Go to EIL.show/voicemail. And I hope to hear from you soon.  

So without further ado here is my conversation with Eric Michael Garcia. 

Mark Armstrong: Eric, thanks again for being here. 

Eric Michael Garcia: Thank you very much for having me.

Mark Armstrong: Your book is fantastic. And I think one very important aspect that we need to address up front is that I found several Van Halen references in it. 

Eric Michael Garcia: [Laughs] Yeah.

Mark Armstrong: You noted that you and your dad disagree on who is the best Van Halen lead singer. So, I wonder if you could clear that up for us once and for all. 

Eric Michael Garcia: Yeah, so, my dad is a Sammy Hagar fan. I am a David Lee Roth guy. And we actually saw both reunion tours — the really terrible one in 2004 that ended with like everybody hating each other. And then I won tickets in 2007 on a radio contest to see the Van Halen reunion with Wolfgang on base. And like, I remember it was it was a back and forth where, like, it was a contest between me and another guy.

And they asked him who sang Panama, and he said, Sammy, and as soon as I, okay… I know I won this. But yeah, this is where my dad and I have a very substantive disagreement and I don't think we'll ever come to a consensus.

Mark Armstrong: So thank you again for being here and, I think a good question to start with would be: What does it mean to be autistic in 2021? And I think there are two parts to this question. What does it mean from, say, a medical perspective, and then what does it mean to be autistic socially sort of day-to-day in 2021?

Eric Michael Garcia: So as of right now, ever since 2013, autism has existed under an umbrella diagnosis in the Diagnostic and Statistical Manual of Mental Disorders as a condition that deals with… a condition that inhibits social interaction and also sometimes, but not always, can lead to repetitive behavior, difficulty communicating, and, reading social cues or reading certain facial expressions. As far as what it means to be autistic, socially, that's the real thing.

Because disability, as we know, is a social construct. And I think what it means today is that I don't think there's ever been both a better time to be autistic, but I don't think that it has ever been as a contentious topic for which there are plenty of people who have a very strong opinion. And I think that now what you're seeing is you're seeing an era where plenty of autistic people are now able to speak for themselves. And what they're facing, I guess you could say, was the old guard of parent advocates and clinician advocates. 

This is obviously isn't clear cut. There are plenty of parents who support neurodiversity. But I think that it's led to it becoming inherently thorny topic whenever you bring it up on the internet. 

Mark Armstrong: What led you to the point of deciding -- you you've worked as a journalist covering both politics and the economy. What led you to report and write this book and focus on the autism conversation? 

Eric Michael Garcia: Yeah. So the beginning of this began in 2015, I was at a party with a guy by the name of Tim Mak, who now is a reporter at NPR at the time he was a reporter for The Daily Beast. I went to a party at his house and he offered me a drink and I said, Oh, I don't drink because I'm on the autism spectrum. And instead of him saying, Oh, come on, have a shot with me, he said, Wow, there's a lot of people in D.C. who are autistic. You should write something about that. And I thought, no, I don't want to be the autistic guy. And then B, I'm still young in my career and all that. So I was working at National Journal again, I was covering the economy. I was covering politics, covering labor, really liked that.

I really liked it. And I still do. What happened was the print edition of National Journal was going to close doors at the end of 2015. So I pitched this idea of that story that Tim had suggested. And then my friend, Richard Just, who was the editor of the magazine, said, well, why should this piece exist.

And I said, well, I think we focus too much on trying to cure autistic people and not enough time trying to help them live fulfilling lives. And if you remember, this was in 2015, and at that time, if you remember, like the beginning of 2015, there was like all those measles outbreaks from Disneyland. 

Then later in the year, Donald Trump is running for president. And they asked him, What do you think about vaccines? He tweeted about autism and vaccines, and he says that autism has become an epidemic. He blames the vaccines. The thing to me was that, wait, those people in California who aren't vaccinating their kids, they're liberals — they’re a bunch of hippies, I grew up in Southern California. And then Donald Trump, for whatever… people say he's an unorthodox Republican, or he was not really conservative -- whatever, he's still a Republican. And what it said to me was, Wow, there are a lot of people on both sides of the political spectrum who get a lot wrong about autism.

The next question was, well, if we focus too much on trying to cure autism and not enough on trying to help autistic people live fulfilling lives, that must mean that we have a lot of bad policy. And then, What does it mean to be autistic?

So, I hit the road. I went to Nashville, Tennessee. I went to West Virginia, I went to Michigan, I went to Pittsburgh. I went to the Bay Area, to try to figure out what it's like to be autistic across America.

And I think that what essentially happened was I was trying to figure out why, we've had very, very bad ideas about autism because for so long, it was so misunderstood. So for me, I mean, I'm a political journalist at my core. That's what I am.

While I respect people who write autism memoirs, I felt that that was not really my style. So I felt ultimately that the best way to understand autism was, well, if we have bad ideas, you know, then we've probably created some really bad policies, some policies that are kind of harmful for autistic people.

That was really what led to me wanting to write this as to figure out how did we misunderstand autism so much and how have so our, our misunderstandings of autism created some really bad policies and really bad really deleterious effects for autistic people.

Mark Armstrong: Tell me a little bit about what are those misunderstandings and misperceptions. 

Eric Michael Garcia: Certainly. So I think you need to go back to the beginning of our understanding of autism. The first time it's ever mentioned is around 1911. So we're talking 110 years ago. It starts with a Swiss psychiatrist by the name of Eugen Bleuler who used it to describe a sort of a childhood schizophrenia.

So that's the beginning, is that we're discussing it as childhood schizophrenia. And then it is later included in the Diagnostic Statistical Manual of Mental Disorders in 1952, again, in the section on schizophrenic reactions occurring before puberty. It cataloged a condition under psychotic reactions in children.

It appears again as a form of schizophrenia in 1968 in the DSM-2. And then it appears finally as a separate diagnosis from schizophrenia in 1980, and the criteria is very narrow. It had to have been an onset before 30 months of age. There had to be a pervasive lack of responsiveness to other people and gross deficits of language development.

At the same time in 1943, a guy by the name of Leo Kanner, conducts one of the most first widely read studies about autism in English. And he's doing it at Johns Hopkins university, not too far from where I live, in Baltimore, Maryland. I live in DC.

And while his study, was in many ways a landmark study, what’s interesting is that even though he wrote that autistic children were born with a quote, “innate inability to form typical social contact with people,” he also noticed that there are, quote, “there are very few really warm-hearted fathers and mothers” of autistic children. And later he said that they were quote, “kept neatly in a refrigerator, which didn’t defrost.” Kanner had this germ of an idea, but then it really gains traction with Bruno Bettelheim in the 1960s.

And he's the one who writes in his book, The Empty Fortress, quote, “I state my belief that the precipitating factor in infantile autism is the parents’ wish that the child did not exist.” And it called autism, “a state of mind that develops in reaction to oneself and an extreme situation entirely without hope.”

So that becomes the prevailing zeitgeist. And probably the most important thing is that as John Pitney a professor at Claremont McKenna college, It basically took autism off the public policy table. Because if it's caused by unloving parents, then public policy can't fix this. And this is in the 1960s and the 1970s. So this is like around the time of like a lot of good government ideas. So like Ralph Nader, Unsafe at Any Speed, or things like consumer safety are really big or, clean water. These are, these are all… Nixon creates the EPA around this time. But autism gets taken off the table. 

And around this time, this is also the beginning of the modern, I guess we could say the modern, disability rights movement in the 1970s. So what happened is for a long time, these ideas permeated. And then, you know, thankfully it was people like Bernard Rimland and Ruth Christ Sullivan, who kind of relegated these ideas to the trash bin as they belonged. But the kind of adverse effect was at the same time, Bernard Rimland also promoted a lot of bogus cures, like with B vitamins or diet, or talking about gluten and milk and things like that.

And he also was one of the biggest promoters of Andrew Wakefield's really bogus idea that vaccines cause autism. They testified at the same congressional hearing back in 2000. What happened is we've basically been affected by, decades, of misunderstanding about autism, and that has led to some really adverse policy consequences. So for example, the first real discussion about autism, in any type of policy, begins with its inclusion in the Developmental Disabilities Act, which was signed by President Gerald Ford. And it's included, under the rights of persons with developmental disabilities. But then it isn't included anymore -- it isn’t even discussed that much more -- until the Individuals with Disabilities Education Act is passed -- which is a reauthorization of the Education for Handicapped Children Act. And what it did is it included autism as a disability. And it said specifically, quote, “autism has suffered from an historically inaccurate identification with mental illness” and that including autism in IDEA was quote, “meant to establish autism definitively as a developmental disability and not a form of mental illness.” 

And what did that mean? What it essentially meant was that students with disabilities are entitled to a free and appropriate public education. And now autistic students are, included in that too. So what happened is it also meant that the schools had to report how many autistic people they were serving to the U.S. Department of Education.

So what you saw is in the 1990s, combined with the changing diagnostic criteria that expanded in the 1980s -- with infantile autism, and then pervasive developmental disorder, not otherwise specified, and Asperger's syndrome and a whole other list of things, and then combined with the fact that schools need to report this to the federal government, you saw a big spike in autism diagnoses from the 1990s until the 2000s, just because it hadn't been diagnosed a lot. But what happened is it created a moral panic about an epidemic of autism. And in that void, Andrew Wakefield stepped in.

Mark Armstrong: And the idea, from Andrew Wakefield and others was this, idea connecting vaccines and autism, and then also organizations or treatments that claim to quote-unquote “cure” autism. Is that right? 

Eric Michael Garcia: It led to Andrew Wakefield testifying before Congress and plenty of politicians, Democrats and Republicans, talked about vaccines. In fact in 2008, Obama talked about skyrocketing autism rates. And he pointed out that some people in the audience might think that it was because of the vaccines, John McCain talked about it. And then at the same time, you also saw the passage of the first real individual piece of legislation on autism was the quote unquote, “Combating Autism Act” in 2006.

And that was rooted, as you can imagine, in the idea that autism was something that needed to be combated and eradicated.

Mark Armstrong: I feel like we've hit this, we've hit this point right now during the pandemic where we're seeing sort of an outgrowth of this vaccine fear in a completely different context, right? 

Eric Michael Garcia: Right. I've argued this and I've said this multiple times that the current vaccine panic about COVID wouldn't exist today without the autism-vaccine panic of the 1990s and the 2000s. It’s essentially – I love this analogy, so work with me. Basically the autism and vaccine panic is to the current COVID vaccine panic what The Hobbit is to The Lord of the Rings. You don't get one without the other, and it lays the groundwork. And we wouldn't have this kind of paranoia about vaccines if there wasn't already an appetite for sowing doubt about vaccines because of fear that children might become autistic.

And this really goes to my other problem with anti-vaxxers, which is that, yes, they're public health menaces. We know that. But the other underlying argument -- think about what the argument is. It's saying it would be better for your child to have measles and die than to become autistic. That's the argument.

And it basically says that autistic lives aren't worth anything and that they're not valuable whatsoever. And that's the message that autistic people have been ingesting for the past two decades. You know, I think a lot about one person who I interviewed, their name was Eryn Star and they're gender nonconforming, And they told me specifically that their mom blamed herself for her child becoming autistic. And you have to think about that. What does that say that when an autistic person hears their mother blamed themselves for who they are? And it creates this kind of twisted psychology, where both the parent blames themselves for letting their kid get vaccinated.

And the autistic person blames themselves for their parents thinking this. And it creates this really distorted idea and viewpoint and perspective where the parents see their children as defective, and they see themselves as defective. And there's no way to really be a good, loving parent when you have this kind of distorted view of your child and the condition your child has.

Mark Armstrong: I want to go into a little bit about some of the history around the diagnosis itself. Because there are a lot of different facets to who gets diagnosed in the first place, when it comes to gender, race, socioeconomic status, geography. How does that factor into sort of the broader history and to where we are today? 

Eric Michael Garcia: Yes. So, I mean, it's important to remember that, in 1943, in the initial study that Leo Kanner did, nine of the original 11 children that he surveyed were from Anglo-Saxon families. And the other two were Jewish. He later said all but three of the families of most of the children were represented in either Who's Who in America or American Men of Science or both.

And what that did is it made autism seem like a white condition or a male condition, because eight of those children were boys and three of them were girls. So oddly enough, I was watching a documentary when I was researching this. It's a 2002 documentary titled Refrigerator Mothers. You have to like download it through some other thing. It took a while for me to get it. But this one Black mother named Dorothy Groomer suspected back in the day that her son Steven might be autistic. And the clinicians told her son told her her son Steven couldn't possibly be autistic because she was not one of those cold and unloving refrigerator mothers. Think about that for a second.

That, because we had this preexisting idea that… Let's break that down. There's this idea that Black people can't be refrigerator parents. There's this idea that Black people can't be autistic. And there's this idea that upper class Anglo-Saxons can't be loving parents. It’s this really twisted ideology.

So what's happened is for decades, there's been a diagnosis gap. In a 2007 study, it showed that African-American children had 2.6 times the odds of receiving some other diagnosis compared to white children. That gap is narrowing now, but autistic kids, Black autistic people, still get diagnosed much later.

White or Black children, are still 1.2 times more likely to be diagnosed than Hispanic children, according to the CDC and their developmental disabilities monitoring network. And on top of that, there's a big gap in women getting diagnosed. Plenty of women don't get the proper diagnosis or they have to have intellectual disabilities. Or what happens is that other, their other disabilities get diagnosed and autism gets overlooked. Because we had this kind of set idea of who could be autistic, we write off anybody else.

Mark Armstrong: Now, you are a third generation Mexican American. when were you diagnosed. 

Eric Michael Garcia: So I have a really interesting story. I was diagnosed when I was… well, I first began the process, I should say, when my parents were living in Wisconsin. My mom read a newspaper article about autism screenings for preschoolers and kindergartners. And she took my sister in.

There was this ad in the paper. Initially, evaluators wanted to send me on my way. And then it was only after they decided to take a second look at the results. And they asked my mom to bring me back in for more tests. And back then, this was in like 1994. So autism -- Asperger's Syndrome was a relatively new diagnosis.

And so we went back and forth, went through a lot of different things. Then midway through the evaluation my dad got a job in Folsom, California, and that's really… and then I started getting… and again, I got overlooked because as my mom says, I didn't exhibit signs of aggression or any of those kind of typically coded, what's typically coded, signs of autism.

And because I didn't exhibit those kinds of stereotypical behaviors that cause people to get diagnosed. And it wasn't until I got the services for special education, because my dad's boss was married to somebody who worked in special education at the time. And then I think we finally got the full diagnosis when we were living in San Antonio, Texas. And that’s when things really took a turn for the better, as far as getting the services and getting the kind of understanding that I otherwise wouldn't have had. But like, you have to understand this was like, this means it was like a four-year ordeal.

I had to be, from like the moment that they detected something to the moment that there was an official label. And take into account that my family is super assimilated. I don't speak Spanish. English [isn’t] our second language. So we had all these capacities a lot of other people don't have. There's a big language gap with autism. A lot of the tools are still solely in English. There are a lot of people who, let's take for example, there was a study in 2013 that sampled 267 primary care pediatricians in California found that 30.4% offer general developmental screenings and 42.9% offered screenings for autism spectrum disorders, but only 17.7% offer general developmental screenings in Spanish and only 28.7% offered screenings for autism spectrum disorders in Spanish.

Think about that. That's in California, where there's plenty of Spanish speakers, right? And this is a fraction of that. So it becomes all the more difficult to get the diagnosis.

Mark Armstrong: It's interesting, you know, for all of the, press about this explosion in autism diagnoses, it seems, you know, what you're reporting bears out is that there's still quite a bit of underdiagnosing happening, because of all of these factors. 

Eric Michael Garcia: Yeah, absolutely. There's still far too many misunderstandings about it, and there's still far too many underdiagnoses or undiagnosed people. So a commonly stated statistic is showing that 75 to 85% of autistic people are either unemployed or underemployed. But again, we can't really even trust that because we don't know how many… we really don't know how many autistic people there are.

And either those who are unemployed or even those who are employed. We don't know how many autistic workers there are. I interviewed this one guy, Chris Williams, who didn't get diagnosed until he was far -- already had his children and he was already working.

So we don't even really know how many autistic workers there are. 

Mark Armstrong: Yeah, that, you know, I saw this headline a couple of years ago in USA Today where it's, the headline said, “Florida's first autistic lawyer.” How do you know that? 

Eric Michael Garcia: Yeah. I should say, I know Haley really well, Haley Moss, who was that person sworn in. And it's important to remember, Haley is the first openly autistic lawyer. She's not the first autistic lawyer. She'll be the first to tell you that. But it was a nice headline, you know… And also it shows that we didn't know a lot about autism. So whenever you say that it's “the first autistic whatever,” it's only the first openly autistic someone. It's not… I remember a few months back, Elon Musk saying that he was the first person with Asperger's Syndrome to host SNL. Well, that's not even necessarily true. Dan Aykroyd, who got diagnosed much later, he hosted SNL and it wasn't until he was well into adulthood that he got diagnosed as being autistic. So that in and of itself, whenever you talk about the first autistic, this is the first autistic that, it's really inaccurate.

Like I remember a few years ago, one White House intern in the Trump Administration, Xavier DeGroat, who I know and have met personally, there was a lot of stuff on Fox News about how he was the first autistic White House intern. Well, not true. I am autistic and I interned at the White House, you know. I just wasn't open about it, you know?

Mark Armstrong: Yeah. So, well, tell me a little bit about that. When did you, start to open up about it within your work, within your relationships? What was that sort of evolution like for you? 

Eric Michael Garcia: I think it started really when I was in college, when I realized I needed services. For a long time. I didn't want to talk about being autistic. I didn't want to mention it, and I used some disability services when I was at community college, but then it wasn't until I got to the University of North Carolina that I realized, Okay, wait, I really need services. And I need these supports. Then I realized, okay, I should probably talk about these things, and I should probably discuss them to get better services, both in my classes and get better accommodations. Not because I wanted special treatment, but just because I wanted to be able to succeed and keep my head above water.

And it wasn't until like, I hung out with one of my friends, like with some of my friends one night when we were at a bar and I mentioned, I can't drive because I'm on the spectrum. And then one of my other friends was like, Oh, me too. And I was like, Oh, I don't think I've met anybody else who's openly on the spectrum before, you know? And then later on when I was working and it wasn't until I wrote that piece for National Journal, beause for a long time, when I was working, I didn't disclose that I was autistic because I didn't want to make a big deal of it. And also, I didn't want people to look at me differently.

And I also didn't want people to say that, Oh, well, he's autistic. He seems to be doing well, so he must not really be disabled, you know? And it goes to why I'm not a fan of terms like “high-functioning” and “low-functioning,” because I think they really erase the needs of both groups and the potential for both groups.

It wasn't until I was in my twenties and it's still, I should say. I don't think that it's a linear trajectory. Cause I, you know, it ebbed and it flowed. Like, I was open about it in college, then I didn't talk about it when I was at work. And then I talked about it at work and then I didn't talk about it. And then I wrote that piece. And then for awhile, I didn't think about it, you know? So it had these highs and lows.

Mark Armstrong: Obviously you've got a book now and you're promoting the book. How has it been in terms of, going back through your life and looking at the decisions you've made around that and how you, how you work with it now? 

Eric Michael Garcia: Yeah. I mean, like it's funny because like, I think back, I go back and especially when I was researching stuff for this book, I was like, What the hell were you thinking? I'm like, Oh my God, why did you do that? And like, there are definitely things that like, I wouldn't recommend anybody else do. I wouldn’t recommend you going to a university in a state that you’ve never lived before, and you hadn't even visited, point blank. And I wouldn't recommend, you know... actually, I take it back. Because I don't know if you because like disclosing you're autistic at work can be such a double-edged sword, so I don't know if I can or can't recommend it. There were so many things that I go back and I think, Oh wow, maybe I should have done this. But then on the other end I'm like, Well, what would have been the other effects had I done that?

Because autism is so misunderstood, every understanding would have been accompanied by a misunderstanding, and vice versa.

Mark Armstrong: Yeah. It seems like, social media has been has been huge in terms of increasing the number of autistic voices online and advocating. Tell me a little bit about the hashtag #ActuallyAutistic community and how that has helped change the conversation. 

Eric Michael Garcia: I think it's helped tremendously because I think for the longest time autistic people… one thing that it's done is that it's given us a connection that I don't think we otherwise would have been entitled to. I think that for so long, we were thought of as individual and isolated cases. For a long time, autism was seen as a very rare thing. So one thing that it's done is it's shown how common autism is, right. And the other thing is it's led to plenty of autistic because… we've had so many conversations about autism while also talking past autistic people. This has enabled us to have substantive discussions and to really include our voices in it.

I'd say like a good 90% of the people I interviewed for the book I interviewed and I first met because of the #ActuallyAutistic hashtag or autism Twitter, or something along those lines. Or it was somebody who I knew from autism Twitter that introduced me to another person, you know?

So, it's created, and it's democratized this world and it's shown how varied autism is. But almost kind of paradoxically, it shows how varied autism is and how it can exist in so many people. Also it's shown the massive commonalities and how similar all of us are. And that has been incredible.

I don't think you can discount the impact it has had on the community and our ability to speak for ourselves. You know, I think the perfect example of this is, earlier this year with Sia, when she put out her movie Music. Ten years ago, that movie probably would have gotten an Academy Award. But when you had so many autistic people pushing back on it, there was no way that the film industry could ignore that, there was no way that Sia could ignore it, to the point that she deleted her Twitter, because you can no longer discuss autism without expecting autistic people to discuss it.

And like, you know, there was this article on Today show’s website about how there's a war between parents of autistic people and autistic people. It's not that there's a war, it's just that now parents of autistic people can't talk about their kids in exploitative ways, and not expect that autistic people won't push back and say, this isn't acceptable. You shouldn't talk about your kids like this.

Mark Armstrong: And something I noticed is your book jumps fairly quickly into college and adulthood — areas that seem to have been historically under-covered when it comes to, autistic people's lived experiences. So was that a conscious decision? 

Eric Michael Garcia: It was and it wasn't. I think that like, the book in and of itself has a lot of autobiographical content. And a lot of it is just, I don't remember a lot of stuff from my high school years, or I should say that my memory is clouded by me being a teenage brat.

You know, and it's colored by me seeing myself as the protagonist in my main story. And I think then as I've gotten older, I can be more mature about other parts. But, I really felt that like, we have so many images of children. Why don't we focus on… because eventually we spend more time alive as adults than we do as children. But for some reason, all the discussion is around children and I have nothing against autistic kids, you know, or focusing on autistic kids. That's good. But that's only a small part of autistic people's lives, hopefully, you know?

Mark Armstrong: A lot of the discussion online and I believe your book attributes it to Cal Montgomery, that we don't actually know what being autistic looks like by itself without some form of trauma mixed into it. Where are we now in terms of that.

Eric Michael Garcia: It's definitely different from when I was a kid, you know. I'm going to bring up Eryn Star again. They had an autism diagnosis, right? And they got it fairly young. I didn’t, but at the same token, they had to deal with the trauma of, you know, anti-vaccine BS.

Whereas I didn't have to deal with that, you know, because that was not a thing when I was growing up. So it's different in some ways, but in other ways, you know, and then there are also plenty of autistic people who've gone through ABA. I never went through ABA, and a lot of autistic people say that ABA is traumatic… 

Mark Armstrong: Yeah. What is ABA? 

Eric Michael Garcia: Applied behavioral analysis. It's basically it's behaviorism and it's essentially breaking down to the most basic moments and using conditioning and using rewards and using, you know, aversives, and basically trying to help, uh, deal with smaller things. But a lot of autistic people think it's conditioning, or don't like the use of aversives or worry that it's trying to make autistic people do more neurotypical. Again, there's a double-edged sword with that. So in some ways autistic people are in a better place than I was certainly when I was growing up. And in other ways, they're gonna deal with the slings and arrows of autism that I don't think a lot of other people do… every time there's some kind of visibility, that also means that there are going to be people who are going to target you.

Mark Armstrong: Your book ends on a very optimistic and hopeful note for the next generation of autistic people. What do you see going forward?

Eric Michael Garcia: I see going forward. I mean, I see it already with people like Dara McAnulty, and I see it with Greta Thunberg and I see it even with autistic people who email me now, who are college students and who are high school students and who are comfortable in their diagnoses. I see it in things like the Pixar short film Loop, which cast an autistic actor to play an autistic person. I see it on the internet all the time. 

So I see them as being able to… again, I know I probably got some things wrong, and I'm sure 20 years, 30 years down the road, there are going to be some people who say, Garcia got a lot of things wrong. Screw Garcia, you know? I welcome that. I'm sure that I got plenty of things wrong and I hope that I can correct them. I hope I can live to correct them. But what I hope is that I help them to be more seen. And I hope that I help them have a kind of working language that where they can adopt the best things and they can discard the other things they don't like. Or if I didn't even create the create language, at least I hope to popularize and propagate it in a way that it hadn't before, and give credit to the people who created these lines.

Mark Armstrong: For neurotypical folks who are listening, how can they continue to advocate for autistic friends and loved ones. 

Eric Michael Garcia: I think the first thing is to just ask. And a lot of people will get mad at me when I say just ask, because they say, well, my kid can't speak or they only make noises. When your kid is making noises or when they’re just stimming, they're speaking to you and you need to listen. Stimming is trying to adapt to an environment. And when they're making noise, they're still trying to communicate. And it's up to you to try to learn what that means. If they're having a meltdown, that's still communication, as you know, Lauren Melissa says, who you should follow on Twitter. Her handle is a @autienelle. 

So I think that it's really important to include and listen to them. And then also it's important to include autistic people in any decision-making process. And when you're a neurotypical person who cares about autism and you have a loved one, reach out to people… my doors are always open. My DMs are open, so you can reach out to me, but reach out to your community.

There are autistic people on the internet who could you talk to. One of the things that helped was using the hashtag #AskingAutistics. Was it incredibly helpful -- It was helpful for me as an autistic reporter, trying to learn more about it. So, there are plenty of things that you can do, and you may think that, Oh, well, I might not be able to learn something from autistic people who are able to speak if my kid can't speak, we probably can. And conversely, you could probably learn something from autistic people with limited speaking capacity, even if your kid can't speak. I write about it in the book -- even though I'm a speaking autistic person, one of the first times that I saw autism on television was with Mel Baggs, the late Mel Baggs, when they were being interviewed on CNN by Sanjay Gupta. And even though their autism looked very different on the surface than mine, the way they carried themselves, the way they stimmed, the way that they found satisfaction and soothing… through putting their face against the page of a book, it all was so similar. And it felt like… for the first time I felt like I was seeing myself on television. So you can learn from different permutations of autism. It doesn't matter.

Mark Armstrong: What are you learning about yourself during this process of having reported out the book and writing the book and now… 

Eric Michael Garcia: I think I learned that, there is a possibility to build a world for. And there is a possibility to be a human being and live a fulfilling and good life. And that there's no right or wrong way to be autistic. I think for a long time, especially because I, even though I had known I had Asperger’s and then later ASD … for a long time, I wasn't connected or plugged in to the community. And I often wondered if I was being autistic, quote-unquote, “the right way” if I didn't know all these things And later on what I realized is that there's no right or wrong way to be autistic. Just like there's no right or wrong way to be a man or there's no right or wrong way to be a woman or a right or wrong way to be Black or white or whatever. You can create a new image for yourself. You can create a new space for yourself. You can build this world for yourself in a way, and this niche for yourself and you can be a different type of autistic. And you can then create a space for other autistic people to inhabit that space. If they feel like they don't have another space.

Mark Armstrong: Eric, the book is fantastic. Thank you again for coming on and being here. 

Eric Michael Garcia: Thank you very much for having me.

Mark Armstrong: Okay. That was my conversation with Eric Michael Garcia. The book is called We're Not Broken: Changing the Autism Conversation, and I think it's a really worthwhile read.

So go check it out. Thank you again to Eric for coming on and thank you for listening. If you like the show, leave me a rating and a comment at Apple Podcasts. Thanks again. And I'll see you soon.