NY Times Interview with ‘We Are Not Broken’ author

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The political journalist Eric Garcia has autism, and he wrote his new book, “We’re Not Broken,” to “hopefully debunk various myths” about the condition. In his introduction, he notes that there are many such myths: that autism only affects white males; that there’s a connection between autism and violent behavior; that those with autism are only capable of holding jobs in technology; that they can’t have relationships or live independently. Though there are elements of memoir in the book, Garcia says his experience is just one small detail in a much larger picture of a wide variety of people who suffer in “a world that penalizes them for not playing by its rules.

When did you first get the idea to write this book?
I was at the magazine National Journal in 2015, and I went to my editor, Richard Just, and said: “I think we focus too much on curing autistic people, and not helping them.” That piece was published in December 2015, which led to my agent reaching out to ask if I wanted to turn it into a book.

The next logical question to me was: What would it look like if you stopped trying to cure autistic people and tried to find work for them?

I want people to stop laughing at the idea that autistic people are the best experts on their experience.

What’s the most surprising thing you learned while writing it?
I learned how big the L.G.B.T.Q.+ community is within the autism community. I’ve been to a lot of autism events where there’s plenty of L.G.B.T.Q.+ people, but I hadn’t thought , “This is a thing.”

Another thing was that the spike in autism diagnoses wasn’t just caused by changes in the DSM [“The Diagnostic and Statistical Manual of Mental Disorders,” a book used in the medical field to classify conditions] in the 1980s, but also because the Americans With Disabilities Act of 1990 included autism as a disability, and that meant that schools had to report how many students they were serving. That created the larger thesis of my book, because it said that the whole reason people like myself — I was born in 1990 — got to have resources was because of deliberate public policy decisions.

In what way is the book you wrote different from the book you set out to write?
I initially set out to be a lot more ambitious. I wanted to focus internationally, to report around the world. But because of time restrictions and then the pandemic, things changed.

What creative person (not a writer) has influenced you and your work?
If you read the book’s chapter titles, a lot of them come from songs. I wanted to be a musician growing up, so I’m just as inspired by Black Sabbath as I am by journalists like Steve Silberman or Ta-Nehisi Coates or Rebecca Traister. I’m just as influenced by Bob Dylan lyrics or by N.W.A. as I am by Woodward and Bernstein.

In 2006, Congress passed the Combating Autism Act. When President George W. Bush signed the bill into law, he said, “I am proud to sign this bill into law and confident that it will serve as an important foundation for our Nation’s efforts to find a cure for autism.” The law’s bipartisan passage was a year after Autism Speaks was founded by Bob and Suzanne Wright in response to their grandson Christian’s autism diagnosis. Autism was entering the public discourse and becoming a cause for mobilization by elites. But this push has not made autistic people’s lives better.

I know because growing up in Southern California as a teenager with what was then known as Asperger’s Syndrome, I absorbed all this messaging about autism. I remember as a rock-and-roll-and-heavy-metal loving teenager, seeing an ad with Tommy Lee of Motley Crue and Roger Daltrey of the Who panicking about the rates of autism diagnoses in children. Gene Simmons of Kiss warned in that same ad that it affected more kids than childhood cancer, Type 2 diabetes and cystic fibrosis combined.

this moral panic took hold, which opened the door for bad-faith actors like Dr. Andrew Wakefield and former model Jenny McCarthy to play to people’s fears about vaccines based on spurious claims.

In the 15 years since the Combating Autism Act was signed, there is little evidence that efforts to find a cure for autism have borne fruit that has improved our lives. Even as Autism Speaks and other organizations have moved on from focusing on a “cure,” much of the research continues to be on the causes and risk factors. According to the Interagency Autism Coordinating Committee’s Portfolio Analysis Report, in 2018, both public and private entities in the U.S. spent $387,680,492 on autism research, including public and private funders. In that year, 42 percent of research money was spent on biology, 19 percent on risk factors and 13 percent on treatments and interventions. Conversely, only six percent of the money was spent researching services and half of that was spent on lifespan issues.

Studying biology is not inherently bad, but focusing and spending so much on what causes autism to the detriment of learning what can improve autistic people’s lives today shows how our society has misplaced priorities.

it is divorced from the legitimate health needs such as how that biggest killer of autistic people with intellectual disabilities is epilepsy while those without intellectual disabilities are also at risk of dying from circulatory diseases like heart disease or suicide.

All of these problems illustrate how too frequently society disables autistic people as much as autism itself does—and lest I be misinterpreted, autism is indeed a disability with impairment

Nowadays, these autistic people are asking that they have input in the policies that will determine their futures.

Autistic people advised presidential candidates as diverse as Pete Buttigieg, Elizabeth Warren and Bernie Sanders when they proposed disability policies in the 2020 Democratic primary.

autistic people are asking the world to lay down its arms and make peace with us.

A whole cluster of autistic people have a sub normal iq & executive functioning ability. Another cluster of those with normal iq suffer from heavy stimming distraction, adhd and poor attention & working memory issues that make us less efficient & more prone to making errors, all of which makes us less attractive to employ than other disabled people.

Until biological interventions come along to address these (something the author & her ND support base is against) these clusters of autistic people will never work or live independently.

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

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

There are certainly impediments that autism creates for me. I don’t want to erase them. Autism is a disability that comes with impairments.

Why did you write a book about autism?
Garcia: The book was a response to an experience I had in 2015. I was at a party, and someone asked me if I wanted a drink. I said I didn’t drink because I’m on the autism spectrum and I take a drug that can’t mix with alcohol. Someone said I should write about it.

CNN: What did you learn in the process of reporting the book?
Garcia: I knew about Jenny McCarthy and Jim Carrey and what they were saying about vaccines for years, but I didn’t know how deeply rooted that philosophy was. In researching this book, I learned all about the history of autism, who bankrolled the original studies, and how we came to understand a little more about what autism is and how different people experience it differently. Learning all this was interesting for me. I didn’t really know a lot about the community. I didn’t really understand myself all that well. By reporting this story, I learned more about myself.

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

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

IMO we need the autism research establishment to take a closer look at these methods, to sort out the wheat from the chaff, rather than dismissing them wholesale as fake, given that they seem to be (together with a lot of physical therapy and occupational therapy) one of the most effective means by which some non-speakers have been able to learn to type independently.

The author like many of her in the ND movement ... (something the author & her ND support base is against) ... One can sum up the view of the author & her type, as long as she remains unhindered by the pathological issues that destroy the lives of less functional more negatively effected autistic people & she has her victimhood identity label to use where she feels will benefit her all is good in the autism world.

We're not against biological interventions to address specific issues that many autistic people themselves want dealt with. We're against Procrustean-bed approaches that aim to make people totally NT.

IMO the autism research establishment should prioritize finding more and better ways to help non-speakers communicate.
....
Also it would probably be good to have medical treatments for the apraxia that is at the root of many non-speakers' inability to speak or even to type.

Beyond prioritizing the needs of non-speaking people, the autism research establishment should do large surveys of autistic people -- including, to whatever extent possible, literate non-speakers and people with at least mild intellectual disability -- to find out what specific issues autistic people feel are most urgently in need of being addressed via medical (or other) treatments. Some of the issues you mentioned would probably be high on the list.

The cluster of autistics with above-average/gifted IQ is equal in number to the one with below 70 and everyone else falls in the middle. It's worth noting that the top 15% corresponds to the NT top 2%.

Mona's post exemplifies the primary goal of ND: to improve quality of life for ALL of us, not to minimize the existence of disabling features of autism.

It is not like this type of thing has not been done with other conditions. Hearing aids, implants, glasses and contact lenses do not cure visual and hearing impairments, they treat them.

There are no guarantees. Autism is very different then those physical and visible conditions. No guarantee of success also means no guarantee of failure. Is the person who presents as severely autistic, non verbal, intellectually disabled, constant violent meltdowns truly beyond much hope? Are the causes of constant violent meltdowns in an individual frustration with inability to communicate, actual pain caused by severe sensory sensitivities? The going assumption is the cause is autism, that is that, all that can be done is a rigorous system of rewards and punishments to minimize autistic behaviors.

But what if the cause is radically different communication and behavior styles that can be at least partially bridged? I assume that that some autistics are so “severe” they can never be even minimally functional but a lot of people assumed to be “beyond hope” can have their and those that care for and about them lives noticeably improved if autistic communication styles were better understood. Assumptions are all we got right now. That won’t change unless ND movement based approaches are not tried.

You made me think of an 11 year old I was asked to work with some years ago in a public school special education program. I was warned that he needed to be restrained on a daily basis; according to his IEP he was nonverbal and mentally ret*d.

Long story short: In the time I was working with him, he never had to be restrained and he enjoyed having conversations over lunch (mostly in Spanish). He was incredibly frustrated by his teacher and classroom aides who treated him with a bizarre inflexibility that made it seem as though they had absolutely no understanding of autism - one aide told me she treated him no differently than her own children (as if this were a good thing). He was nonverbal with them because, as far as he was concerned, they didn't understand anything anyway. That boy's best life will probably never include a full-time job but understanding and accommodating for his differences would certainly help him more than just trying to "train" him.

The NT, normative developmental approach to autism has been based on many false assumptions because of a lack of participatory research and the questions you raise are important. They are being addressed by NT and autistic researchers. The difference is what I call the "obviousness factor". In 2012, autistic Damian Milton's "double empathy problem" proposed that communication problems are bidirectional, putting another nail in the coffin of the theory of theory of mind - they don't understand us as much as we don't understand them. That idea was of course something we autistics always knew. Now Milton has many NT proponents.

My suspicion is that forum members who are opposed to ND are under the impression that media representations, which might make some feel like their experience is being minimized, are wholly reflective of the conceptualization of neurodiversity, but they are not. The ND movement is a natural consequence of increasing numbers of diagnosed neurodivergent scholars/researchers. Even if some autistic difficulties seem to get swept under the carpet in popular media, that isn't the case in the peer-reviewed literature.

The cluster of autistics with above-average/gifted IQ is equal in number to the one with below 70 and everyone else falls in the middle. It's worth noting that the top 15% corresponds to the NT top 2%.

Mona's post exemplifies the primary goal of ND: to improve quality of life for ALL of us, not to minimize the existence of disabling features of autism.

Roughly 45% of autistic adults are ID, the reason for this is there is a large border group of around 25% between 70-85 IQ, that is not included as the 33% or so of ID autistics at 8 years old. This is removed in adulthood half join the normal IQ band, the other ID.

Above the normal IQ range things get a bit more tricky and controversial, is high IQ really a measure of capability?, Many of us lack the dignity of living independently or being able to hold down a job and require NT`s to help us get by one way or another.

If i had more severe symptoms, a super IQ but couldnt live on my own or travel i would gladly swap it for an IQ of 85 and a "normal existance".

Im not sure where your getting your stats from anyway or what`s classed as "gifted", which is subjective and has to be looked at from the context of deficits and what is taken away from the person that should be a normal right of existance as an human adult.

When I first started posting I was citing my references but that seemed a bit much, so I stopped. The stats I referenced came from the Nederlands Autisme Register (https://www.nederlandsautismeregister.nl/). They've been officially tracking the autistic population there for 10 years. Convention is that below 70-75 IQ is the threshold for mental retardation and 130+ is gifted. IDD is a rather broad (and sometimes subjective) classification system. IQ is a measure of cognitive ability and has an extremely high predictive value for developmental outcomes across the lifespan. It is a trait, like height, not a measure of worth and extremely high IQ comes with its own problems. I do live on my own and travel, but I would gladly swap my IQ for 85.

"Normal existence" as defined by you, me, a normal person? The boy I spoke of has a very different normal than I do and is no less dignified because of it. I don't see why not being able to live independently or have a job would make someone undignified; we all have our limitations. There is no indignity in needing help and as autistic culture matures it is increasingly likely that help will come from a fellow autistic. It is true that some of us cannot hold jobs. It is also true that some of us are fortunate to not only work, but to work in the fields that most impact the experiences of autistic people. That's a good thing and it doesn't happen when autism is viewed through a medical model of pathology.