Saturday, September 4, 2021

We're Not Broken: Talking with Autistic Journalist Eric Garcia About Changing the Autism Conversation

Eric Garcia wants you to know that autistic people like him, like editors here at TPGA, like all our editors’ children, are not going anywhere—and that this is true regardless of how much support each individual autistic person needs to live their best life. Garcia’s new book We’re Not Broken: Changing the Autism Conversation talks about what we can all do as parents, advocates, educators, policymakers, and allies to ensure that the autistic people who have alway been part of our communities can thrive through having their disabilities acknowledged and accommodated, while recognizing and fostering their abilities.

TPGA editor Shannon Rosa talked with Eric about several of the themes in his book. 

Book cover with a white background. Large colorful letters occupying most of the image reads, "We're Not Broken". Smaller black text underneath reads, "Changing the Autism Conversation". Smaller colorful text underneath reads, "Eric Garcia".

[Image: Book cover with a white background.
Large colorful letters occupying most of the image reads 
"We're Not Broken". Smaller black text underneath reads  
"Changing the Autism Conversation". Smaller colorful
text underneath reads, "Eric Garcia".]

Thinking Person’s Guide to Autism: Why don’t you tell us a little bit about the book and your reason for writing it?

Eric Garcia: I’d have to go back to 2015. This was when I was in a party in Washington. I met a guy named Tim Mak, who offered me a drink. I said, “I can’t drink, because I’m on the autism spectrum, and the medicine I take doesn’t mix with alcohol.” And instead of him saying, “Oh, don’t be a wimp, just have a drink,” he said, “Oh, there’s tons of autistic people in DC, and you should write a story about that. This is a legitimate thing.” I said, “Do you think they work in politics or journalism?”

And then he got on my case the second time he saw me, and I thought, “Maybe.” And then what happened was that I was working at National Journal at the time, and the print magazine was going to shut down at the end of the year. And Richard Just, who was my editor at the time said, “I kind of want to have go for broke stories.” So I pitched my story I’m Not Broken: What This Washington Reporter With Autism Wants You to Understand, and he challenged me, saying “Why should this piece exist?” And I said, “Well, we focus too much on trying to cure autistic people, and not enough on trying to help them live fulfilling lives.” And he said, “There’s your piece right there.” 

And if you remember, this is around 2015, and Donald Trump was starting to lead in the polls on the Republican side, and I’m a political journalist, and if you remember that September, he mentioned that he thought that autism was an epidemic, and he talked about the vaccines, and… Trump is a serial liar. We know this. But, as much as Trump is a serial liar, and as much as he has no regard for the truth, he was saying something a lot of people believed. He wouldn’t have lied about that if it wasn’t already a germ of an idea that had been spreading for a long time. 

Also, earlier that year, 2015, there had been an outbreak of measles at Disneyland, and that made me think: California, those aren’t a bunch of conservatives; those are a bunch of liberals. Hippies who don’t vaccinate their kids because they don’t want them to be autistic. And so what all this meant to me is what Steve Silberman said: The autism conversation has been dominated by vaccines for so long that we haven’t really done a good job of talking about how to improve autistic people’s  lives. And I’m a political reporter; that’s my job. 

So I wrote that piece in The Atlantic, and then I was on to the next question which was, “What has this misunderstanding of autism meant for public policy?” Because everybody’s lives are written in public policy. And then, that led me to think, “What are the gaps and how do autistic people navigate them?” And then more importantly, what do what do about it? What if we built a world that was welcoming to autistic people, and our laws were welcoming and accepting of autistic people? And that’s basically what this book is about. That’s the long answer. 

TPGA: That’s a perfect introduction. I was fascinated by the way you called yourself a member of the “Spectrum Generation.” I was wondering if you could talk about what that means both in general and personally.

Garcia: I kind of stole that idea from Rebecca Cokely, because she talks about the “ADA Generation,” which is the first generation to really benefit from the Americans With Disabilities Act. The Spectrum Generation kind of overlaps with the ADA Generation but not completely—it’s a Venn Diagram. But the Spectrum Generation is the first generation who were able to get diagnosed under the version of the DSM that understands autism as a spectrum. And as a result they got diagnosed, when they probably previously wouldn’t have gotten diagnosed. 

And more importantly, because the Americans with Disabilities Act (ADA) and the Individuals With Disabilities Education Act (IDEA) passed in 1990, around that same time, a lot of people got accommodations that they otherwise wouldn’t have. 

Everyone talks about the ADA, understandably. But I argue that IDEA might be an even bigger deal for autistic people, because under IDEA the federal government mandated that schools had to report which autistic students they were serving. And that was how you got an increase in diagnoses, and an increase in tracking and detecting autism, and therefore more people got educational accommodations.

This is not to say that everything was great afterwards. You’re a parent, and you probably know better than I do that the federal government has never kept up its part of the bargain: It was supposed to fund 40 percent of special education, but it has only ever funded about 14 percent

So I’m not saying that these policies are perfect, by any stretch. The government has never fully funded, or even lived up to the promises of, the IDEA or ADA. But those were the beginnings, those were the seeds. And now a lot of that initial generation is either growing up or has grown up. These are the people like myself, Ari Ne’eman, Julia Bascom, people who otherwise wouldn’t have gotten diagnosed, who otherwise wouldn’t have gotten services in school. They were able to go to college. They were able to get jobs. They were able to do these things that previously it was thought autistic people couldn’t do. 

TPGA: Now that we have more people who are identified, and who able to access these services, what I see in the parent realm is that the services tend to go to people who have class, race, and educational advantages. So, who’s being left out of the Spectrum Generation?

Garcia: This goes back to the beginning of the story of autism in America, which is that every one of the autistic children Leo Kanner studied at Johns Hopkins University in Baltimore were either Anglo-Saxon or Jewish. Which makes me laugh, because I know Baltimore, and it is not predominately Anglo-Saxon or Jewish. 

The way we diagnose kids overwhelmingly leads to Black and Latino kids getting diagnosed with behavioral disorders instead of autism. It also excludes a lot of women and femme people, to say nothing of transgender males and nonbinary people. We also ignore a lot of people for whom English is a second language. As M. Remi Yergeau points out in their book Authoring Autism, if autism is a rhetorical condition, and if the main way we diagnose autism is through rhetoric, then that puts plenty of autistic people for whom autism is not their first language at a huge disadvantage. 

TPGA: For the benefit of our readers who have difficulty with academic terms, can you explain what you mean by a “rhetorical condition”?

Garcia: I’m bastardizing this, and you should probably talk to Remi Yergeau about this, but the way we discuss autism is mostly through spoken words. Because there are no biomarkers for diagnosis, instead we rely on parents telling us things like, “Well, my child is not responding to their name.” Autism as a condition exists through stories and rhetoric. 

And similarly, it’s also a condition through which people who have agency, the ones who can speak, are the ones whose words are taken seriously, because they can speak with their mouths, and not with a text communication device. Autism being a rhetorical condition means that people who have control over how to define it, who are considered authorities on it, are usually the people who tell the stories, who can tell the stories.

TPGA: That goes right into my next question, about how “experts” can move autism conversations either forward or backwards, depending on how much they are listening to autistic people. What do you want to see there? What would be a good example of this disconnect?

Garcia: I’m sure you saw the news about the Interagency Autism Coordinating Committee (IACC)'s new slate including nonspeaking autistic members? If I had my druthers IACC would be more than half autistic people, more like three-quarters. Because a lot of people might read this book and think that I’m anti-parent. I’m not anti-parent. I interviewed you [a parent] for this book, so you know I’m not anti-parent, right?

And a lot of people might think that I’m anti-science or anti-research. I’m not. I think that everybody, that researchers and parent-advocates and advocates of their loved ones do play a key role. But I also think that these people should recognize that it’s not their lives that are being lived. Yes, they’re affected by it tangentially, but ultimately it’s about autistic people’s lives, themselves.

One thing that I didn’t think about until I actually filed my manuscript: Growing up, my psychiatrist would eventually say, “Not you, him!” in a very thick Salvadorean accent, whenever my mom would answer for me. And that always stuck with me, and I have a lot of respect for her for that. Because she would be very adamant, implicitly saying, no, I need to listen to Eric's input. That’s very rare, because when peole thought of autism as "childhood schizophrenia," or as a form of brain damage, then people didn’t think that autistic people could know what’s best for them.

In my book, I say that the 1990 House of Representatives report on IDEA said that autism has suffered an historically inaccurate identification with mental illness, and that including autism in the IDEA was “meant to establish autism definitively as a developmental disability and not as a form of mental illness.” That’s really important because at the time a lot of autistics were either in institutions or crowded care settings, or weren’t diagnosed, so their words weren’t taken seriously for a long time. I guess you could say they still aren’t, completely, but autistic people didn’t really get a foot into public policy until the 2000s. And really didn’t get their legs in—those who have legs—until the 2010s, or even the 2020 presidential campaign. 

I’d like to see more autistic people have input into policy, and their opinion be included as the primary and the foremost opinion that’s taken seriously in any kind of public policy.

TPGA: Okay, and so the point in differentiating between autism and mental illnesses is of course not to stigmatize mental illnesses, but just to point out that they are separate conditions and the support needs and the advocacy and the agency of the two communities, even though they overlap, are separate.

Garcia: Right, exactly. That’s what the report said. I wasn’t able to get the actual report when I was writing. But yeah, it’s saying that autism and mental illness are two distinct, different things. And it’s important to say that autism is a disability, not a mental illness.

I want to be clear I’m not stigmatizing against the mental illness community. But they’re a very specific subset and a very specific group with very different needs than the disability community. Sometimes those needs overlap, but it would be a mistake to say that their needs are the same.

TPGA: Yes, exactly. And this actually leads right into my next question. Similar to the way that there are false links between mental illness and violent behavior, there’s also no link between autism and violent behavior.

Garcia: Yeah.

TPGA: We have studies, and you talk about this in your book, how autistic people are more likely to be victims than they are to be perpetrators. So, why do these harmful stereotypes persist and what should we be studying instead? It’s so clear that so many people of color who are autistic are disproportionately represented in terms of being arrested and being condemned. When we talk about wrongfully imprisoned autistic people of color like Neli Latson, who was finally just exonerated. So what do you want to see in these discussions instead? What do you want people to know about autism and violence?

Garcia: So I’m sure you saw that the lawyer for Capitol rioters and "QAnon Shaman" Jacob Chansley, said that his client and all the Capitol Rioters are on the autism spectrum. He said a lot of horrible things about them. And then in the same way, Dylan Roof's lawyers were arguing that he’s autistic. Even just recently, the lawyer for the Capitol Gazette shooter tried to use autism as an excuse.

TPGA: Lawyers tried to autism as an excuse for the Toronto van attack guy as well.

Garcia: Yeah, Jesus Christ, man. We should be, the autistic community should be, unequivocal that there is absolutely no link between autism and violence. There are plenty of autistic people who don’t do these things. There are plenty of autistic people who are, as I said in the book, more likely to be victims of interpersonal violence—not just women but trans people and non binary people. 

I think people make these associations because because autism is still criminally misunderstood, and so it’s easy to kind of throw whatever you want and blame whatever you want on autism. 

I’ve often said that Democrats and Republicans screw over disabled people equally when it comes to guns. And I’m not a both-sideser. Sometimes one party’s right, sometimes the other one is. My dad’s a Republican, and my mom’s a Democrat. But I think that Republicans use mental illness and disability to divert any discussion about guns. Meanwhile, Democrats tend to use mental illness and disability to say, we’re not going to take away everybody’s guns. We’re just going to take away the guns of the people who shouldn’t have them.

But there are plenty of autistic people who shoot guns. I’ve shot guns; I was in Boy Scouts. But such subjects wind up being a way for politicians to gain points or advance their agenda without actually serving anybody, or looking at what really works.

This is to say nothing of how many autistic people have been killed by police, or have been wrongly incarcerated. That’s a very, very fraught discussion, and through research in the book, I came to realize that I don’t think that any kind of training for police dealing with autistic people can actually work. I’m not convinced. 

So if we’re going to research things, why don’t we research what are some alternatives to helping autistic people, instead of police? Other things, just the simplest things, like seizures which are a large cause of a lot of autistic people dying. I’d rather see research on that. I’d rather see research on increased life expectancy for autistic people. 

But more than that, we know that it’s not just the length of years that matters for any group of people, it’s the quality of those years. I would like to see more on how we can improve the quality of autistic lives.

TPGA: Well, again, we just had a new IACC seated. Their goal is to advise on autism policy, and you talked about how currently research in autism is primarily going to care and causation with only a very small proportion going to quality of life of existing autistic people rather than theoretical autistic people. So what would you like to see the IACC do about this, to the extent that they are able to influence policy?

Garcia: Once again, I’m not necessarily against research in biology. I think it can actually help a lot of people.

TPGA: Well, again, with regards to bringing up epilepsy. I know plenty of autistic people who don’t want their autism cured. I don’t know a single person who doesn’t want their epilepsy addressed.

Garcia: I think we need to be realistic, in that most research is not actually helping autistic people right now. So I’d like to see more research money go into services and lifespan issues. What are the ways we can help autistic people with intellectual disabilities graduate, go to college? Not just college or high school, you know? What would be the best educational settings for autistic people so that they can be integrated into classes with their peers, their neurotypical peers or their non-neurodivergent peers, and what also are the ways that schools as a whole can be accommodating? What are the ways that employers can be accommodating?

TPGA: So, true inclusion as opposed to nominal inclusion.

Garcia: Yes. Like, there are a lot of autism hiring initiatives. You live in the Bay Area, you know. By tech companies and financial institutions. I’m not knocking those, I get why they’re doing them. But what I would like to see is okay: autistic people are getting a foot in the door, which is a good thing. But how do we facilitate if they want to be promoted. That they want to manage a team? I think that managing people is a good skill, and I think that there’s a misunderstanding that autistic people can’t manage other people. They absolutely can, they’ve just never been given the opportunity, so we don’t know what it looks like to have an autistic manager.

But also, what happens if autistic people are either crashing and burning at a lot of work, or they’re growing and leaving? John Marble talks about this in my book. What happens when an autistic person finds that they’re not satisfied, that they’ve kind of worn out all their options, they’ve kind of outgrown their job?

TPGA: You did address this in part in your book, when you wrote that the concept of loyalty in autistic people might not be entirely due to what neurotypical people think of as loyalty, but due to a lack of opportunities or conceptualization of what it means to actually have your career grow.

Garcia: Right, a lot of autistic people are worried that this is going to be the only job that they have and as a result it can lead to employers exploiting them. I’ve been at jobs where it’s run its course. And everybody has those moments. But how do we help autistic people when they decide, I want to go to a different job, or I want to start my own business?

TPGA: What are some specific examples for you, because I know you’ve actually changed jobs a few times just in the short time that I’ve known you. So how do you personally know when it’s time to change? Are your job changes an outgrowth of learning these skills on your own? Or has this been externally imposed?

Garcia: I’d been a reporter for a while. I didn’t have anything against anybody, but I want to be able to grow. So when I decided I wanted to learn to be an editor,  I left Roll Call to join The Hill, and then I went to the The Washington Post. And then I realized I missed reporting and writing. So now I’m at The Independent and I’m a senior Washington correspondent.

Autistic people change jobs and they should have the right to change jobs as much as everybody else. Nobody’s career is static. My stepdad worked at AT&T for 35 years and retired two years ago, a year and a half ago. That’s not the case for a lot of people anymore. It’s not even the case for my mom. So autistic people deserve to know how to navigate their jobs, too.

TPGA: Absolutely. So in terms of quality of life, one of the things I was grateful to you for addressing is the unhelpful and harmful binary that people, like yourself, who have lower support needs don’t have any struggles, and then people like my mostly non-speaking son with intellectual disability only have struggles, and can’t do anything. Do you think there’s a way for autistic commonalities to be highlighted in a way that helps parents of kids see them, so we parents and autistic adults can do more fighting together, instead of against each other as so often happens?

Garcia: I kind of worry about, it’s almost like class warfare, isn’t it.

TPGA: Yeah.

Garcia: The funny thing is, whenever parents or anybody says "You don’t know what it’s like to be autistic like my son," it's like, you’re right, I don’t know what it’s like because autism exists differently in every different person. But I want the same things you want for your kid. I want them to be happy. I want them to have a fulfilling life. I want them to have friends and all that. I want all the same things that you want, that I want for anybody else.

I think that it comes down to language. I’m a journalist, and as much as journalists like to say that we can’t show a bias, or we can’t—the language we choose is, in and of itself, a very biased act. When we choose to use phrases like high functioning or low functioning, that doesn’t do a service to anybody. As opposed to saying high support needs or low support needs, or even a different term that we haven’t come up with yet.

I think that what matters mostly is—and hopefully my book does this—showing autistic commonalities. One of the things that I was really adamant about doing, in the chapter where I profile your son Leo and your family, is writing about Leo's story side-by-side with Autistic Self Advocacy Network (ASAN) Executive Director Julia Bascom's story.

TPGA: I appreciated that.

Garcia: And I did that very deliberately, because I think Julia is somebody who most people see as an important political figure, public policy figure.

TPGA: Yes, people see her accomplishments at ASAN, and so make all these assumptions about how her life must be.

Garcia: Right, but what I really wanted to do is show how similar Leo's and Julia's experiences are. And people might say, oh, well, she’s able to speak, she’s able to be independent. But she requires a lot of support. Everybody requires some kind of scaffolding. And I think that highlighting the similarities between Leo and Julia, as well as their differences, is really important. 

TPGA: Yes, thank you. Along a similar vein, you talked about your own struggle accepting accommodations in your educational career, and I was wondering, what message do you want disabled students who hesitate to access the accommodations that they need, deserve, and are legally entitled to—what do you want them to take away from your book?

Garcia: What you just said, which is that it’s their right as students. It’s the law.

TPGA: And yet I still see so many students who just do not want to ask for these accommodations, because they don’t want to be singled out.

Garcia: Like I said before, we’ve never really funded disability services in America the way we should. So, what’s politics all about, at the end of the day? It’s not money. It’s about scarce resources and who gets what. That is the plainest, must blunt, most brutal truth and nobody likes to talk about it. That’s what politics is. It’s about who’s going to have their suffering alleviated, and who’s going to suffer. That sounds really crude, but that’s what it is.

And I think that because we’ve never fully funded services for disabled students, then as a result a lot of disabled students who may get to university feel like, well, by virtue of me making it to university, I must not be really disabled. Also people may have had really bad experiences with getting services and accommodations.

TPGA: Though, for you, it sounds like getting accommodations was transformational, and integral to your academic success, right?

Garcia: It’s integral to a lot of people’s academic success, and why wouldn’t it be? I think that more people should come out as disabled. And I get why people feel like, oh, I shouldn’t use accommodations because I’m not really disabled, because I don’t have the difficulties some other people have. But when you do that, you wind up selling yourself short. You wind up limiting yourself.

And even if accommodations and resources are scarce, that’s not a reflection on your disability. That’s an indictment of our society and our country and our government, or your state university, your private university, that chose that the funds, that said we’re going to spend money on this or we’re not going to spend money on this. How much we choose to spend on disability services doesn’t make you any more or less disabled.

TPGA: Can you talk about some of the disconnect you see between disability and autism advocates and parents, when it comes to policies, like, employment, supported employment, and housing choice? 

I personally see a socioeconomic disconnect. I see a lot of parents who want their children to live in nice places, and who do advocacy that doesn’t necessarily include everybody, because they’re not used to having to think about everybody. And I also see parents getting really angry about their children, saying, well, my child will never be able to hold a full time job, and you talked about how, the employment safety net was never intended to include everybody, that’s not the point. So I was wondering if you could talk about that a little bit.

Garcia: It's interesting that, by virtue of wealthy people being wealthy, a lot of times they don’t have experiences with things like Medicaid. Or they don’t have experience with having a sub-minimum or minimum wage, or things like that.

But I think more than that—I’m trying to choose my words carefully—a lot of umbrage is because a lot of people see what they’re doing as a charitable thing. A lot of people who run these congregate residential settings think they’re doing a good thing. And for a long time, that was seen as the right thing to do.

TPGA: And the supported workshops as well.

Garcia: Yes, it’s important to remember that that clause, 14(c) was in the Fair Labor Standards Act of 1938. 

TPGA: Which was signed by a disabled president, right?

Garcia: Which was signed by President Roosevelt, yeah. The very name of The Fair Labor Standards Act was seen as the right and charitable thing to do at the time. But as our understanding of fairness has improved and evolved, I think a lot of people worry about, well, does this mean that I’m a bad person if I put my kid in a sub minimum wage workshop? 

And at a very personal level, we need to say that you’re not a bad person because that was the prevailing paradigm at the time. Now, of course, if a person has an agenda, or they’re doing it with malicious intent, then of course we should call them out on it. But a lot of times these people are doing it because they were told it was the right thing to do.

TPGA: I couldn’t agree more. But the thing is, now we’re at a point where we have a lot of battles at the federal and state and local policy level about what the best practices are for people with disabilities, and we have parents discounting and openly dismissing the lived perspectives of people from the disability community who’ve actually done sub minimum wage work and who’ve actually lived in institutions. And I find that frustrating.

Garcia: Let’s talk about the Judge Rotenberg Center, which is still using electric shocks on disabled people. Who are the biggest supporters of it? It’s parents. Even though we have consistent records of people saying that being shocked is a painful experience. It’s almost as if the parents have become so entrenched, and their interest is so vested, that they’re not willing to entertain any other alternative.

In talking about Donald Trump in my book, it was very important to me to say that it isn't just that he was full of it about autism, but that he got his information from Bob Wright, who co-founded Autism Speaks. These things don’t exist in a vacuum. And that’s incredibly important. Because a lot of these people already have access to social, financial, or political capital, they are able to influence the conversation in a way a lot of self-advocates couldn’t by virtue of them not having a lot of money.

TPGA: And then also, if we’re to go back to the Judge Rotenberg Center (JRC), and drawing on many aspects of the conversation that we’ve been having: A lot of the parents at the JRC are coming from an environment where they’ve never had autistic-informed information, or support to help their children live their best lives, or help them understand why their autistic and disabled kids might be behaving the way they are.

And I still see so many parents putting their kids through really dodgy alternative treatments, or believing that ABA therapy is the only thing that will help their child. So until we have policy that helps support autistic children from diagnosis day one and helps identify them earlier, I’m not sure we’re going to escape the likes of the JRC.

Garcia: This is one of those things I deliberately didn’t write about, because I don’t have a good answer to it. But I think that what needs to happen is that while everyone talks about early diagnosis, you also need to get early good information.

TPGA: That’s what we try to do.

Garcia: That’s why I’m a fan of Thinking Person’s Guide to Autism.

TPGA: Thanks.

Garcia: And I’m not just saying that because you're interviewing me. But what matters primarily is getting good autism information, and that’s a task, I’m not going to diminish it. And when you have an onslaught of different voices, and when the internet gives equal weight to the cranks and to self-advocates, it becomes really hard to differentiate the signal from the noise. And everybody says they have the best interests of the kid at heart. The people who advocate for shock therapy are saying that as much as you do. They’re making the same promises that you are. 

So I don’t really know how we get through. It’s the same question I think about as a journalist. In the book, I wrote about how my dad is a Fox News-watching Republican. He thinks that the people who rioted at the Capitol aren’t Trump supporters. I don’t know how to get through to him. I know people from my high school who now buy into human trafficking conspiracies, and they’re not going to believe me because I’m part of the mainstream media.

TPGA: This is why I’m really grateful to see the surge in increased representation of autistic and disabled journalists in the last few years. People like you and Sara Luterman and others. A problem for me, as somebody who initially fell for autism misinformation, was that the autism journalism at time of my son's diagnosis was all pure fury and fear and panic and crisis. For the first ten years of my son’s life, not one person ever told me that my son could be autistic and happy. Not one. That's no longer the case.

And I think a lot of the onus of more positive and realistic autism reporting is on mainstream journalists like you, so I’m just very grateful to you for doing that with this book, and in general.

Garcia: Yeah, but to be honest, like I said, then there are people who are never going to trust me because I work for the mainstream media.

TPGA: Well, you’ve got to reach whoever you can.

Garcia: And there are trade-offs with everything. So, on one end, some people are never going to believe me because I worked for the “fake news” media and on the other hand, I have a growing audience, hopefully. So you always have to weigh those things out. And I don’t know the right way to cut through the noise and cut through the BS, But that’s not an autism problem, that’s a media problem.

TPGA: One thing I've learned from the work we've been doing, is that while you cannot reach everyone, you reach more people than you may think. So again, I’m really grateful to you for writing this book. I hope it gets the audience it deserves.

Garcia: Thank you.

TPGA: Is there anything else you’d like to add, anything I haven’t covered?

Garcia: The only thing I can think of is what I said at the end of my book: I know that I inevitably got things wrong. And I’m going to keep getting things wrong. Even the stuff that I started writing when I started writing about autism in 2015. I got major stuff wrong that I don’t believe anymore. But what I hope is that I got enough right that it could lay the groundwork for people who can fix what I got wrong.

TPGA: Great. And hopefully, in your next book.

Garcia: Yeah, exactly. And what I also want to say is that I’m not going to stop writing about autism or disability politics after this. This is a life-long thing and I want to keep on. As you said, in the next book. I want to keep writing about this because there are things I learned after I turned in the last manuscript that I wish I had known earlier. So I’m going to keep doing this because there’s so much stuff that I didn’t have a chance to get to, as well as the stuff I had to cut. That is my hope.

TPGA: I look forward to your ongoing work and advocacy. I appreciate this again, Eric. 

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Note: I forgot to ask Eric about his book's beautiful reporting on autistic parenting, so instead please enjoy a direct book quote:

[image: #KindleQuotes graphic, quoting Eric Garcia from his book
We’re Not Broken: Changing the Autism Conversation. Black text on a light gray background
The text reads, “When I am with the Willamses in their home with their kids,
there is no doubt in my mind about whether autistic people can or should be parents.
To the contrary, Chris and Cori being aware of their autism makes them better parents
to their three children; it makes them especially attuned to their kids’ needs and also 
willing to advocate for them when other assume they are not entitled
to the same things neurotypical kids are.”]


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Interview transcription by Keffy

Wednesday, September 1, 2021

Grieving While Autistic

Jess Hudgins
sawfishladyblog.wordpress.com

Content note: This essay discusses death, disordered eating, and suicidality.

The Beginning 


On January 11th 2021, at 10:20pm, my father died. My heightened sensitivity to sensory input decided to record all of it, so very many things I don’t want to remember. The smell of sanitized plastic, the warmth of his skin against my cheek fading away, the way I held on to him until hospital security dragged me out screaming. 

I would like to draw you a picture of that day. I would like to explain in the vivid details that for better or worse I can’t forget. I would like to tell you exactly what it feels like to have someone call a time of death for your father who can’t possibly be dead, except he is. Instead I’ll describe the bright white light of the moon that was streaming into my bed room the whole night. And the white skeletons of the bare winter trees blowing around in the wind. The yellow hoodie which I never wore again. The familiar smell of my room in my childhood home. All these things I remember vividly. And perhaps this is where I begin. At this experience everyone labels as grief.

Illustration showing a bright white moon through bare white winter trees A person wearing a yellow hoodie with the hood up is sitting on a bed, crying.
Drawing by Jess Hudgins
[Image: Illustration showing a bright white moon through bare white winter trees
A person wearing a yellow hoodie with the hood up is sitting on a bed, crying.]

Getting Though the Next Two Weeks


I would like to say the night he died was the worst day of my life, but it wasn’t. It was all the days that followed, each somehow worse than the one before it. Everyday took me further away from him. The first week passed with near constant panic attacks and then in a Clonazepam-filled haze prescribed by my doctor. 

I could only feel was what was missing. I couldn’t hear his voice. I couldn’t smell him near me. There were no more cuddles and no more hugs. That the sensory input of love and family that I had known every day since I born was no longer in my life. And it was acutely painful, my skin hurt. My chest hurt. I would wake up in the night screaming for him. Everyone said that it would get better after the first few weeks. It never did. 

I spent long days in bed. Every second that passed was split between feeling like I was getting further away from my father, and wanting enough time to pass that it didn’t hurt so much. I couldn’t do anything for myself. I didn’t even know where to begin, I didn’t know what order things should happen in. 

There is really so much that needs to be done when someone dies. My friend was the one who called in for leave at my work. She did everything for me to the point that I still don’t know everything that she did. I truly would not have made it through those first few weeks without her. I lay there letting the world pass me by. 

Every morning I woke and the first thing I remembered was that was dad was dead and this black water would rush over me. Some days I never slept at all so I didn’t have to wake up. I didn’t shower, or wash my face. I couldn’t even open my mouth to speak. I had never been non-speaking before. 

My cat got fed because she was loud enough to scream at me. But I don’t know when I noticed that my snake was out of water. I don’t know how many days I had left him there like that. And I felt a new wave of loss a sorrow, that life would keep going without Dad. Whether I wanted it too or not. I guess that was the first checkpoint along my trail of grief. It couldn’t possibly, but life was moving on. 

After that the cat got fed, my fish got fed, and my snakes always had water.

The First month


I wasn’t actually aware that I stopped eating. More like I forgot that I actually needed to eat. I would put something in my mouth and swallow like I had done everyday day before. But the action of swallowing was so very unpleasant, it was difficult and I hated the feeling of food in stomach even more. It was a sensation I had never been so aware of. The slow, heavy feeling of eating. I know many of my autistic peers have texture and taste aversions, but I got an immense dislike for the feeling of anything in my stomach. I got an immense dislike for the process of eating in general. 

People kept sending me food, I know they were trying to be helpful, but I ate very little and when I did it would immediately make me throw up. I slowly just gave up eating entirely. 

One night I was having another panic attack—or I thought I was having panic attack, I had panic attacks all the time. I sat up in bed to look for those deep breathing Gifs on my phone. I sat up and a realized I couldn’t sit up. 

I slid down on to the floor. I tried to stand up but I couldn’t stand either, so I crawled into the living room. I was having a panic attack but my heart wouldn’t stop racing no much how much deep breathing I did. I tried again to stand up but I just fell back down. I lay there on the floor wondering if I was going to die. I didn’t much care if I did. But Dad would care. And in that moment, that was enough. I decided to call for an ambulance. 

I remember the bizarre sensation of making words come out of my mouth for the first time in weeks. 

“I don’t know if I’m having panic attack or a heart attack” I told them. It didn’t even feel like my voice. 

I remember telling them to take me to the hospital that had been good to my friends suffering through mental health crises. I remember the nurses sticking in an IV and drawing lots of blood samples. I know they asked me lots of questions but I stopped answering somewhere in the middle. I sat there in bed silently crying and they let me, and felt glad I remembered the nice hospital’s name. 

They brought me lots of warm blanket and those hospital socks like my father always used to wear so he didn’t slip on floor.

My potassium had gotten dangerously low, and my heart was having trouble beating. They asked if I wanted to stay there and I shook my head. They reminded me to eat more, and they called a taxi to take me home. 

I made a deal with myself to self to eat 1,000 calories a day after that. 

And the Next Month 


My mind and body physically hurt. There’s no other way to describe it. The world which was once full of so much love, so many hugs, and endless physical affection was now gone. Now there was only me. I would hug myself so hard to try shut out the loneliness, but dad hugs are a very special thing. It’s no replacement for the physical sensation and warmth created by those you love. And being constantly and acutely aware that it is gone forever can send you down some dark holes. 

I did try reaching out for mental health help. The first group lied to me multiple times and misrepresented their intentions. They scared the crap out me and threatened me with hospitalization when I said I was scared of them. I didn’t call the mental health hotline again. 

The second group I sought therapy with called for a police wellness check because I couldn’t stop crying. 

I know autistics get killed by police all the time during wellness checks. And I was completely overloaded. I covered my ears and squeezed my eyes shut but the police wouldn’t go away. If the therapist hadn’t still been on Zoom when they arrived I actually think I maybe would’ve been arrested or shot. 

And the third clinic was nice but they waitlisted me for many weeks. People who weren't autistic kept telling me to try a different hotline, and I think that was the first time I fully grasped that they don’t have to worry about getting shot just because they react differently. 

And then I started thinking there was no help for me at all. I had been traumatized to the point that I couldn’t try reaching out again. 

It ended up being a circle in my head. Dad would want you to live. Dad is dead. If I die I’ll be where ever he is. I’m not really afraid of dying any more. But dad would want you to live. 

One night I walked out into the snow, down to the small stand of trees near my apartment. There was stream there, half frozen, and the moon was full. The trees were bone white and it reminded me of the night my dad died. I sat behind some tree roots tucked into the dark where no one on the trail would see me. 

I had looked it up and it said in these circumstances it would take an adult 45 minutes to get hypothermic. I don’t know exactly why I had chosen hypothermia, but it seemed better than dying in my apartment and sitting there for days while my cat and my fish went hungry. 

It took a surprising amount of time. 

My friends knew I was depressed, but maybe I felt like they didn’t understand how hard getting help is, or how abusive the mental health system can be to non-neurotypical people.

I’m not neurotypical and couldn’t compartmentalize like they did. I couldn’t just ‘get it together’ and I could stop feeling it all at once. And so I sat there in snow listening to sounds of winter darkness around me. 

And I waited. And I waited. And I think I was getting a little bored so I took out my phone. There was another autistic woman I had been messaging from a community group and she offered to come over and just sit with me and talk for a while. 

And I realized hypothermia was probably a bit more complicated than they describe online so we left the forest and went back to my apartment. 

Illustration of a hand-drawn line graph titled "Actual Pain Over Time" with an X axis labeled "Time" and a Y axis labeled "Pain" At first the line is 3/4 up the Pain axis, is quavering but stable, and is labeled "Like static confusion" next the line goes up and down within a 10% range and is labeled "Daddy where are you" Next a small downspike is labeled "Ate food didn't throw up" Then the line goes off the Pain axis threshold and is labeled "DADDY!" Then the line comes down to the top of the pain scale and is labeled "Random good day suspicion" Then the line goes off the chart again and is labeled "Whereareyou?!" Finally the link comes back down into visibility before going off again, and is labeled "He's not going to answer is he?"
Illustration by Jess Hudgins
[image: Illustration of a hand-drawn line graph titled "Actual Pain Over Time"
with an X axis labeled "Time" and a Y axis labeled "Pain"
At first the line is 3/4 up the Pain axis, is quavering but stable, and is labeled "Like static confusion"
next the line goes up and down within a 10% range and is labeled "Daddy where are you"
Next a small downspike is labeled "Ate food didn't throw up"
Then the line goes off the Pain axis threshold and is labeled "DADDY!"
Then the line comes down to the top of the pain scale and is labeled "Random good day suspicion"
Then the line goes off the chart again and is labeled "Whereareyou?!"
Finally the link comes back down into visibility before going off again, and is labeled "He's not going to answer is he?"]


And After 


In my head my dad feels like a decompiling computer. A life is linear, there is long ago, and there is now. But for my father, things are happening all at once. Christmas ten years ago and Christmas this year are all memories I have at the same time. It’s unsettling. I hate it so much. It hurts to process things this way. 

I don’t know how I got to where I am now. But maybe it was just watching the slow crawl of time outside my window. From winter to spring and then spring to summer and now summer to the first reaches of autumn. 

I picked up all the replacement joints my father had in his knees and hips from the crematorium. I wrapped them in my favourite pillowcase covered with tropical fish. I sleep with them every night and hug them when I’m lonely. I have some of his clothing on the shelf and it’s comforting to have around, too see the familiar patterns.

I covered my house in orchids, like my father had done so many years ago. 

Some of my animals became sick in the spring. My snake Sara had issues with eating and my fish Max had a tumor in his tail that began to get infected. I swear, Max held on for as long as he could, until he knew I was strong enough to say good bye. And so I held on for him, because I knew he was relying on me. I will love him forever for that. I honestly think he saved my life. 

Photo of a small orange, black, and white pet fish.
Photo © Jess Hudgins
[Image: Photo of a small orange, black, and white pet fish.]

I lost my job in early spring. I struggled with money for a while. I eventually got into a therapy but I’m not sure how much it helped. It would have helped more earlier on, like right after my dad died. I feel sad that I had to go through so much of this alone. 

My blankie has suffered some serious wear and tear these past few months. 

I eat regularly again. I’ve gone back to my dance classes. I’ve started talking to people about doing a PhD. Which means I’ve been thinking I at least have a future. It’s a thing that exists even if I can’t quite imagine it. 

I still don’t get many hugs. I still feel emptiness in the space my father used to be in. I still miss my him every day. I still wrap arms around myself and wish that it was him hugging me. I still cry daily.

My father left me a life-changing amount of money. It’s vulgar seeing his life reduced to numbers. And I think, if give this back, can I have my father again?

I have accepted this as a new normal for my life. I know it would be sadder to not be feeling this loss so acutely. I am scared for the days when the memories start to fade and I can’t remember my dad as well as I do now. I saved his voicemails on my phone but I don’t listen to them as much as I used to. I still can’t think of him as past tense. 

There’s a new fish named Emile who lives in Max’s tank. I like Emile a lot. Time, it seems, will keep trudging on. 

There is one thing I am absolutely sure of: I will always be so very grateful that he is my father.