Wednesday, October 27, 2021

Spectrum 10K and Cognitive Dissonance in Autism Research

The Thinker, Rodin
 Photo by AndrewHorne, Public domain, via Wikimedia Commons
[image: A photo of Rodin's sculpture The Thinker, which is a naked
man sitting on a rock, hunched over with his head resting on his encurled fist.]

Mary Doherty
twitter.com/AutisticDoctor
www.linkedin.com/in/mary-doherty-5b84b186/

Spectrum 10K, the largest study of autism in the UK, was launched on August 24, 2021 amid a flurry of media attention—only to be paused less than three weeks later following an outcry from the autistic community (of which I am a member.) Concerns were raised around ethics and data management, but the primary issue is the potential use of such research for eugenic purposes.

I am peripherally associated with the biomedical autism research community, as a member of the AIMS-2-Trials Autism Representatives Steering Committee, and ECRAN, the associated early career researcher network. My involvement in such a controversial project stems from my desire to potentially influence the research agenda for the benefit of the autistic community: Many autism researchers have never known an autistic person, except as a research subject, and interacting as professional peers has been illuminating for many. (My perspective is outlined in a talk given at an ECRAN workshop in 2020 entitled Stigma and Unconscious Bias.)

As a medical doctor—a consultant anaesthetist—my knowledge of autism genetics and genomics research is basic. I mix up the terminology, and watch colleagues wince when I say genetics instead of genomics, although I know the difference. (I experience the same automatic wince when researchers use person-first language or misuse the term 'neurodiverse.')

My own research interests focus on healthcare access for autistic adults and issues facing autistic medical professionals, therefore I bring a range of perspectives as I consider my response to Spectrum 10K. I have sufficient knowledge of the current autism research agenda, the history of autism, and current advances in reproductive medicine to be seriously concerned about this project and similar research underway worldwide.

On the one hand the Spectrum 10K team states their values on their website, including a clear anti-eugenics stance:

“Spectrum 10K is anti-eugenics. To be precise, we do not work towards or advocate for termination of pregnancy in relation to a foetus who may later be diagnosed as autistic. We are aware of and abhor the awful history of eugenics, including how science has been used to justify many atrocities globally.”
On the other, this project is basic science dressed up as helping autistic people with co-occurring medical conditions. But ultimately it is a genomics project which will add to the evidence base around polygenic scores (PGS) for autism. These polygenic risk scores for medical conditions are already being used to select embryos during in vitro fertilization (IVF). There are already toddlers in this world who were selected as embryos based on polygenic scores for various medical conditions; the implications of this new direction in reproductive medicine were recently discussed in a leading medical journal. Such a test is not available for autism yet, but we have to ask if this is where the research is leading?

As for the AIMS-2-Trials, it is an international consortium of research teams and industry partners who are “exploring the biology of autism to tailor treatments and develop new medicines” and who also claim to oppose eugenics: “AIMS-2-TRIALS is not developing a genetic test and is ethically opposed to eugenics. It is also unlikely that a genetic test will ever be specific or accurate enough to predict whether a person will develop autism.”

While Spectrum 10K and AIMS-2-Trials are separate projects, there are researchers common to both. And both stake their anti-eugenics positioning on the expectation that a genetic test “specific or accurate enough to predict whether a person will develop autism” is unlikely. But are such claims disingenuous, given the current move towards using polygenic risk scores in reproductive medicine?

While such possibilities are denied, a preprint from a Spectrum 10K research team suggests otherwise. This study, not yet peer reviewed, suggests that polygenic scores (PGS) correlate with clinical profiles, and appear to show an apparent protective effect of autism PGS on co-occurring developmental disabilities. (This means that common genetic variants associated with autism are less likely to be associated with co-occurring intellectual disability, but ‘de novo’ or rare high impact genetic variants are more likely to be associated with intellectual disability.)

Recent and related discussions with leaders in the biomedical autism research field has led me to the astounding realisation: The possibility of paving pathways for eugenics may not be simply inadequately considered, but not considered at all. There is no attempt to hide the search for stratification biomarkers (biological features which can be used to group autistic people into subtypes), and it is unclear what the research community expects to be the outcome of such work. 

I have no doubt that the individual researchers I have encountered are well-meaning and sincere in their desire to positively impact the world. However, there appears to be a total lack of awareness of current reproductive medicine practices' bias against neurodivergent people, never mind the implications. For example, autistic people or even those with a family history of autism are currently prohibited from acting as sperm donors for IVF, with sperm banks subject to legal action for failing to prevent autistic children being born. Since 2013, it is accepted practice in Western Australia to use sex selection during IVF to reduce the likelihood of an autistic child (sex selection is not allowed in general, except where there is a history of autism).

Additionally, there is the ever-growing list of conditions that can be detected by preimplantation genetic diagnosis (PGD) and therefore prevented. Given the stigma associated with autism, and the focus on costs attributed to potentially life long care needs, the desire to add autism to that list seems to be driving much of the current research agenda. 

Also, a recent, questionable paper by Blaxil et al claims that the increasing costs of autism poses a “serious threat to the economic future of the U.S,” and the authors propose a prevention strategy, citing a lack of evidence for reduced costs using an intervention strategy. Their “prevention” scenario assumes that strategies and opportunities are already “used by wealthy parents to lower their children’s risk of ASD” and suggest these “can be identified and made available rapidly to lower income children and ethnic minorities.” Criticisms of the paper are currently under consideration, but nonetheless, it was peer reviewed and published in Journal of Autism and Developmental Disorders.

So we know that society, if given a chance, will prevent us autistic people from existing. We know it is happening already, as detailed above. Is it possible, is it credible that biomedical autism researchers at the cutting edge of autism genetics research are genuinely unaware of developments in allied fields? Is this a result of working in silos, in which scientists are so isolated from those in other disciplines that they have no idea of how their works might intersect or overlap?  

Spectrum 10K and similar projects will inevitably lead to polygenic scores being used to select for or against autistic people, particularly as data sharing alliances increase across the world. Therefore, as work on differentiating between groups of autistic people using polygenic scores and stratification biomarkers is ongoing, the obvious question arises: Is this an attempt to select for those who may be deemed useful, while preventing others with more complex needs from existing? 

This is the essential question, the proverbial elephant in the room, as stratification is the subject of much current autism research. Yet this is not a straightforward quest. While on a superficial level the challenges associated with autism may appear to be split into separate "functioning" categories, the reality for autistic people is much more complex and fluid. Those who are familiar with the autistic world know this, yet the search for a genetic basis on which to segment our population continues.

Many autism researchers, however, are unfamiliar with the autistic world, and seem to assume that autism is to be avoided or prevented, even if it’s no longer considered acceptable to use the word “cure.” Or do researchers only avoid using that term in autistic company? What about in labs where autistic people are excluded, or forced to remain incognito? I hear valiant efforts to use appropriate terminology in spaces where we are known to be present, only to hear the same professionals revert to person-first language and functioning labels once back in the apparent security of their professional sphere. Are the considerations being shown to autistic concerns in Spectrum 10K and other autism research realms merely performative? 

There is a cognitive dissonance that arises from the contradictions inherent in stating “we do not want a prenatal test for autism to be developed," while simultaneously producing basic science which will inevitably lead to that outcome. As an anaesthetist, that is akin to saying I don’t want patients to be aware during surgery, while failing to administer anaesthesia. The inherent contradictions in this positioning are baffling. How is it credible that scientists working in this field are unaware of these developments in the wider field of reproductive medicine, as appears to be the case? 

The alternative is that they are aware but are being disingenuous, and I don’t know if that is worse. I also have no clue whether individual scientists are being honest or not. It’s likely that there are some in either group. Is it possible that some within the biomedical research community are well-meaning but na├»ve, and also being manipulated by those with darker motives or commercially driven intent? Or are they so compartmentalized in their thinking that they see no inherent conflict in pursuing autism genetics research while espousing an anti-eugenics stance? 

While ethical issues in genomics research are common across all specialties, medical conditions are generally acknowledged to be worth preventing. Curing cancer is in no way akin to eugenics, but autism is different. Autism is not an illness, and autistic people have the right to exist. Our community has already been the target of eugenics, such as Aktion T4 in Nazi Germany and the paediatric euthanasia programme at Am Spiegelgrund. Hans Asperger, once lauded as a hero, is now hated by many, following revelations he condemned to death those children considered to be unbearable burdens to their families. Yet how can those who exhort us to “learn from history and not repeat its terrifying mistakes” fail to appreciate that their current work may lead to similar outcomes? Do they genuinely differentiate between active killing of those autistic people deemed unworthy of life, and prenatal prevention? 

Or is this the hidden agenda? Is there a tacit understanding among scientists that the actual goal is in fact to prevent the births of those deemed "undesirable," while keeping those who might contribute to society? My heart breaks at this thought. Is there societal support for this potential outcome, driven by the cost of care needs?

Scientists being unaware of the potential for harm unleashed by their work being used in unanticipated ways is not new. Scientific regret is well documented, as exemplified by Oppenheimer, Einstein, and even Nobel, as regret was the catalyst for establishment of the Nobel Peace Prize. But the scientists involved in Spectrum 10K cannot claim ignorance. They have been told, loud and clear by the autistic community, from the earliest days of EU AIMS, Aims-2-Trials and since, culminating in the outcry over and boycott of Spectrum 10K.

Spectrum 10K is currently paused to “co-design and conduct a meaningful consultation.” The approach of setting a research agenda, then including autistic people in a tokenistic manner—as with AIMS-2-Trials A-Reps—is no longer sufficient. The autistic community, including autistic researchers and scientists, must be involved at the highest levels when decisions are made regarding the autism research agenda. We cannot be kept busy with token consultations while the real decisions are made elsewhere.

The gulf between the biomedical research and the autistic communities is far deeper than realised by the research community. An apology is needed for past harms to our community by biomedical research, but perhaps this needs to start with exploring what those harms have been. As we see in non-pharmacological autism interventions, the harms may not be obvious to non-autistic people. For example, alongside financial costs, mental health issues for autistic people are often suggested as a target of biomedical autism research, without any appreciation that the current intervention and research agenda may in fact be exacerbating mental ill-health

As a community, autistic people have documented our research priorities, and causes of autism or “cures” do not feature prominently. We want research that will directly and positively affect our lives. We recognise that biomedical researchers generally do not have the skills to conduct the type of research we want, but the skills they do have can potentially be used for our benefit. Genomics offers enormous potential for improving human health. Knowledge in this area is accelerating at an astonishing rate, with debates raging around the ethics of genome editing, and regulation urgently required to avoid discrimination against vulnerable groups

Autistic people are a vulnerable community, and as stakeholders in this debate, we deserve full and transparent engagement. We cannot allow the scientific process to continue in a direction that results in elimination of other autistic people, only for researchers to express regret when the inevitable outcomes occur. Scientists may claim that regulation is the role of society, not science. Yet who guides society on such matters, if not scientists with knowledge of the field? 

These are difficult issues. If the obvious conclusion is valid; that PGS or other interventions may be used either to avoid autistic babies, or to avoid those deemed to have a higher likelihood of complex needs, then this must be openly acknowledged. If the biomedical research community is blindly forging ahead with lack of awareness or insight, this is an altogether different—but no less pressing—problem. In either case, the only way forward is absolute transparency, open debate, and a truly participatory approach to future research.

Friday, October 22, 2021

About That Study on "Preventing" Autism Diagnoses, and How Autism Researchers Can Do Better

Source: Wikimedia Commons
[image: Photo of a smiling Black toddler with curly black hair up in puffs, sitting in a 
Black adult's lap, while a smiling medical professional interacts with them.]

Patrick Dwyer, MA
Lucas Harrington, PsyD
Ava Gurba, BS
 

Last month, researchers in Australia led by Andrew Whitehouse published a new study: a trial of a “pre-emptive” intervention for infants assessed to have an elevated likelihood of later developing autism.  Internet furor immediately ensued, with some headlines proclaiming that the new intervention could prevent as many as two-thirds of autism diagnoses. Many neurodiversity advocates were naturally horrified by these ominous headlines, but was the media portrayal accurate?

What were the researchers trying to do?

The researchers who conducted the study claimed that it “chershes neurodiversity”: that instead of being about suppressing autism, the intervention aimed to help the caregivers of these possibly-neurodivergent babies better understand their children and adapt the environment to be more supportive of the infants’ needs.  The researchers said that the “inaccurate” media headlines “misrepresented” what they were trying to do.

If the study really was about helping caregivers understand neurodivergent children, it could be very much in line with the neurodiversity movement’s goals. Damian Milton’s concept of the “double empathy problem”—which is supported by empirical research—highlights that it is not only autistic people who struggle to understand neurotypicals, but also neurotypicals who struggle to understand autistics.

So if the goal of this controversial study was really trying to address the double empathy problem for caregivers of young children, in a manner aligned with the neurodiversity movement and with autistic people’s priorities, did the researchers succeed?

How close did the researchers come?

Although the researchers did come quite a bit closer to succeeding in this than many of the headlines about their work would suggest, in many ways their study also illuminates just how far autism research still has to go, in order to reach the standards the community can trust. Nevertheless, the intervention itself was probably the area in which the researchers’ study came closest to meeting the community’s standards and expectations.

The intervention—which is summarized in one of the paper’s supplements—does indeed explicitly aim to help parents understand and have empathy for the child’s point of view. In particular, it aims to promote parental attunement to the child’s unique, individual way of socially connecting with the caregiver, making sure that the child does not become discouraged or disinterested after efforts to connect are overlooked or misunderstood. This is very well-aligned with the goals and objectives of the neurodiversity movement.

The researchers also tried to keep track of whether the intervention caused adverse events (they reported it didn’t), which is something that autism intervention research has historically tended to ignore. Thus, although it’s not quite clear how the researchers judged whether adverse events were caused by the intervention, their work made progress over prior research by simply considering the possibility the intervention could cause harm.

Furthermore, the intervention involved weekly sessions with parents that were only about two hours long each.  A lot of pressure gets placed on parents of young neurodivergent children.  While this intervention did recruit parents to drive its effects, it doesn’t seem like this time commitment would cut into other important parent-child activities.

One potentially concerning part of the intervention protocol says that it includes “reinforcement” of interpersonal interactions between babies and caregivers. That word often conjures up images of artificial manipulation, as in the case of children being rewarded with food and praise for doing things they would not otherwise be willing to do. This can often encourage the child to “mask” their autistic traits, hiding their true feelings and needs in order to receive approval or tangible rewards from others. Pressure to mask is a common concern among autistic advocates and masking is associated with a number of negative mental health outcomes.

However, reinforcement also occurs naturally, when the natural outcome of a behavior encourages the person to repeat their behavior in the future. For example, if a baby points at something and receives it, they are naturally reinforced for pointing, meaning that they are encouraged to continue doing so because it helped adults accurately understand and meet their needs. 

We emailed the authors of the study to learn more about their intent, and they clarified that parents were encouraged to respond naturally to baby-initiated interactions: if the baby’s behaviour suggests that they are trying to communicate or request something, the caregiver should respond accordingly. This teaches the baby that reaching out to others can be a positive and worthwhile experience. Thus, the “reinforcement” in the protocol seems to be nothing more than good, empathetic parenting.

Where did they fall short?

Although the intervention itself may have been consistent with the community’s expectations and goals, the researchers probably did fall short by failing to make this clear in the main body of the paper, or even the supplement. Ideally, community members shouldn’t have to send follow-up emails to reassure themselves of key details about research studies.

Moreover, although the authors of the paper were careful to frame their work in a neurodiversity-aligned way when they responded to backlash from the autistic community, their original paper is written in a very traditional, medical model-aligned manner. The first sentence describes autism as a “disorder” characterized by “impairments,” and much of the rest of the paper is devoted towards explaining how the intervention may have reduced autism “symptom severity” and made children less likely to receive an autism diagnosis. This is, of course, totally inconsistent with the goals of the neurodiversity movement. It might even risk resurrecting the spectre of the “refrigerator mother” by implying that parents, as the deliverers of the intervention, can control whether their children become autistic or not.

Why are the authors saying one thing in their paper, while talking about how the intervention “cherishes neurodiversity” elsewhere?  They probably weren’t trying to be duplicitous, especially since the intervention itself seems inoffensive, but many of the institutions of academia do tend to encourage orthodoxy—one might even say rigidity and insistence on sameness!—in academic papers. For example, the authors may have decided to write their paper the traditional way in order to get it through peer review more quickly; one of the downsides of academic peer review is that any departure from convention tends to elicit knee-jerk criticism. Moreover, researchers unfamiliar with the neurodiversity movement would have needed a neurodiversity framing to be justified and explained, lengthening the paper, and medical journals (such as the one the authors published in) tend to require short, simple papers.

Unfortunately, the authors made a choice to focus on how their intervention affected “autism symptoms” and autism diagnosis. Admittedly, studies take time to run—they chose their outcome measures more than five years ago, and they may well have regretted the choice later—but it was clearly not a choice in line with the priorities of neurodiversity advocates.

Did the study actually reduce autism diagnoses?

One important question is whether the media hype was justified: Did the study actually reduce the odds of autism diagnosis?  Statistically, it’s quite a bit more complicated than some of the simplistic media headlines suggest.

Crucially, the claim that “two thirds” of autism diagnoses were prevented is based on a tiny number of children. Of the 89 children that were examined by the researchers when they reached the age of three years old, only 12 children could clearly be diagnosed with autism.  Three of the diagnosed children had received the intervention, and nine were controls. These are extremely small numbers!

Could it have been a fluke?  If you repeatedly toss twelve coins, chance alone will sometimes give you more heads than tails, or more tails than heads...

Indeed, fewer children who received the intervention were indubitably neurotypical—only five—than children in the control group, eight of whom were assessed as clearly neurotypical.  Does this mean the intervention, while reducing the odds of autism, also reduced the odds of being neurotypical?

The researchers used a statistical test (i.e. a “Fisher exact test”) to determine whether children’s likelihood of being clearly autistic, clearly neurotypical, or potentially neurodivergent differed between intervention and control groups more than would be expected by chance. The result did not quite achieve statistical significance, meaning that the intervention group wasn’t necessarily either less autistic or less neurotypical than the control group: both trends might well have been flukes. As such, the media headlines about two-thirds of autism diagnoses being “prevented” were very premature!

It’s also worth noting—as the researchers did—that not all children can be reliably diagnosed as autistic when they are three years old. It’s possible that some children in the very large potentially-neurodivergent group, who fell short of meeting the formal autism diagnostic criteria, will still receive an autism diagnosis later in life. The intervention might have reduced autistic traits enough to delay diagnosis, but not prevent it.

Unfortunately, news media that need to sell headlines don’t always closely scrutinize research papers for these sorts of caveats. Moreover, sometimes it’s hard to spot the caveats unless you have the specialized training and knowledge that comes from being a researcher. Since plenty of people in the autism world who aren’t researchers are very interested in—and very affected by—autism research, we as a field need to do a better job clearly and transparently communicating the limitations of our work.

Did the study actually reduce autism traits?

Only follow-up monitoring will tell whether more study participants will come to meet autism diagnostic criteria as they grow older, but the researchers did say that they already have evidence showing that so-called “autism symptoms” were lower in the intervention group than the control group.

But what does it actually mean to have fewer “autism symptoms”? The main measure used by the researchers—the Autism Diagnostic Observation Schedule-2 (ADOS-2)—assesses a wide variety of autism-related traits, ranging from functional skills (e.g., pointing to communicate) to harmless differences (e.g., unusual phrasing), to possible stress responses (e.g., repetitive movements). On a positive front, a child could look “less autistic” because they are more skilled or less stressed, while still maintaining a fundamentally autistic neurology. Alternatively, a child could look “less autistic” because they have learned to suppress unusual behaviors, (i.e., mask their autism), without improving—and perhaps even hurting—their quality of life. ADOS-2 scores alone do not give us enough information to assess whether the outcome is desirable.

What do researchers need to do better?

Too often, neurodiversity and community perspectives are treated as an afterthought or a distraction, rather than a scientific priority. The aftermath of this study poignantly illustrates the need for widespread change. No matter how well-designed an intervention is in the laboratory, stigmatizing messages of “disorder” and “prevention” will damage the public’s trust in its potential. How can the field of autism research begin healing the rift with the autistic community?

On an individual level:

The authors of this study did many things right that should be repeated by future work. In addition to directly addressing the double empathy problem, they reportedly partnered with autistic people, and they investigated whether the intervention caused harm. One area of improvement would be being more transparent about these efforts so that the community can know how thoroughly their concerns were addressed. Researchers should also take care to communicate clearly, so that their work cannot easily be distorted or misrepresented in the news media.

More broadly, researchers need to fundamentally shift how they think about autism. Researchers often continue to conceptualize the neurotype solely in terms of deficits, despite ample evidence of associated strengths as well as harmless/neutral differences. A neurodiversity-informed framework would not ignore the challenges associated with autism, but rather balance that perspective with acknowledgement of valued aspects. A neurodiversity-informed researcher would select or develop outcome measures that reflect the autistic community’s goals for themselves, such as quality of life and mental health, rather than assuming that fewer “autism symptoms” or lack of an autism diagnosis is inherently good. Indeed, a neurodiversity-informed researcher might worry about whether falling short of diagnostic criteria could leave people without necessary supports.

Partnering with the community

It is very difficult to achieve the competence to navigate these complex issues without direct community voices. Although the researchers said their study emerged out of ongoing community partnerships, it’s unclear what this entailed. For researchers to secure community trust and establish genuine collaborations, autistic partners must represent a range of perspectives (e.g., race, gender, level of support need), and have meaningful power to challenge traditional researchers’ biases. If community collaborators are meaningfully included in the research team, community collaborators could, to name just a few examples:

  • Ensure that outcome measures and intervention goals reflect community priorities;
  • Ensure that intervention methods are likely to be helpful, not harmful; and
  • Anticipate how community members will engage with and respond to research papers, and revise the framing to be respectful and sensitive.

Perspectives of autistic parents may be particularly valuable and insightful regarding how to create supportive environments for autistic children.

Systemic changes needed in our field

Researchers may be frustrated by the slower pace of community collaboration. This is understandable, because many researchers face intense career pressure to publish lots of papers quickly (“publish or perish,” some say). However, this systemic issue merely emphasizes how our field must change. Partnering with the community should not be seen as “slowing down progress” any more than a thorough literature review is “slowing down progress.” Research results cannot be considered meaningful if important context has been excluded in the name of saving time. 

Unfortunately, there is no shortage of systemic barriers facing those idealistic researchers who are already attempting to partner with the community or re-evaluate traditional assumptions. It can be difficult to secure funding or publication for efforts that require readers to rethink their assumptions. Journal editors often require tight word counts, leaving little room for nuance.

It will be hard for the community to trust research until the autistic perspective is meaningfully represented at every level, from grant funding to ethics approval to journal peer review. Some of these changes are beginning to occur, with autistic researchers and other community members reviewing grant applications at the AIR-P Network, journal submissions at Autism in Adulthood, and to some extent NIMH grant applications, but much more needs to be done. This will require not only greater inclusion of community members in these processes, but also proactive support for developing autistic autism experts, who are often excluded from education and employment by lack of accommodation or even direct stigma. These sorts of large-scale systemic changes would help researchers, autistic laypeople, and parents gain confidence that research is truly working towards the best interests of the people it aspires to help.

In summary, it appears that many concerns about this infant intervention were misplaced. The core message of Whitehouse et al. is no different than what neurodiversity advocates have been saying all along: neurodivergent children, like their neurotypical peers, will be more socially engaged when they are treated as human beings with meaningful perspectives and intentions.

At the same time, we do not intend to say that the outcry from the autistic community was unreasonable. This incident has highlighted much deeper issues in the field of autism research. Why did the authors feel the need to dress up their message in the language of pathology and prevention? What if the headlines had read, “Autism doesn’t have to be a problem if children are understood and supported”? Exciting new visions are emerging for research that can be easily embraced by the neurodiversity movement. We must all do our part to further these efforts and help create a future where new generations of neurodivergent children are accepted, understood, and able to thrive.

Monday, October 18, 2021

Jordyn Zimmerman on This Is Not About Me, a Remarkable New Film

Photo of Jordyn Zimmerman, a smiling white woman with long curly brown hair.
[image: a photo of Jordyn Zimmerman, 
a smiling white woman with long curly brown hair.]
Jordyn Zimmerman is the subject of the phenomenal new documentary This Is Not About Me. Her story is one example of the difficulties non-speaking autistic people endure when they aren't given appropriate communication options—and also how they can blossom when communication becomes possible. We interviewed Jordyn via email to talk about themes from the new film, as well as her own experiences and hopes.

You can watch the This is Not About Me trailer, and rent the film, at thisisnotaboutme.film.

Thinking Person's Guide to Autism (TPGA): You are now pursuing a Master's degree. Can you talk about why you chose this educational path, and your career goal?

Jordyn Zimmerman (JZ): As you see in the film, I had many experiences which made me who I am today. I want to change the system so students do not have the difficulties I faced with obtaining an education and/or accessing effective communication. I am also very passionate about every student exercising their right to a truly inclusive education.

TPGA: Can you talk about the work it takes to learn to communicate through AAC? (I ask because some people assume AAC is an instant miracle.)

JZ: Learning to communicate through AAC is not easy and there are no words that describe the complexity (and frustration) it entails. Initially, besides using it here and there, I was pretty resistant to the iPad. I did not want to hold it or carry it—however, once a strap was put on it and I began to wear the iPad, I became more excited about its use. 

Still, it took a lot of practice before I transitioned from symbols to typing, and then typing complete sentences. When I really got the hang of it and was able to share so much about my body and what I was feeling, it was exhilarating and beautiful.

TPGA: Do you consider autistic traits like stimming to be good, bad, or neither? Can you talk about that?

JZ: I definitely do not consider stimming to be bad. It is simply a motion to generate a sensory response and/or to help soothe our bodies as we become accustomed to the environment we are in at that time. Sometimes, I become totally engrossed in my hands and make sounds with my mouth. 

TPGA: How did running for exercise help you while you were a student at Mentor High School?

The repetitive motion and rhythm of running definitely helped to stimulate and regulate my body so I could handle more of  the sensory input I was processing each day.

TPGA: Tell us about Buster, the large dog who makes an appearance in the film. What kind of a dog is he, and what was his role in supporting you?

JZ: Buster is a Cane Corso, which is an Italian breed of Mastiff. He was a trained service dog, who is now retired. Buster supported me throughout my day at school—providing deep pressure by physically laying his head or whole body on me, attending to me when I was upset, stopping me from running into traffic, and alerting staff when I needed help. 

TPGA: You mentioned that people didn’t know what inclusion was when you started college. Can you explain what inclusion really means?

JZ: Inclusion means everyone participating together and feeling a sense of belonging. Successful inclusion isn’t about everyone doing the same thing or doing everything perfectly, but people share the same outcome—though, how they get there may be different. The entire community must collaborate and embrace this idea.

For Ohio University Sparkles [the inclusive cheer team Zimmerman founded], this meant forgetting about the “what ifs.” It did not mean Sparkles doing the same stunts as the OHIO Cheer team, but it meant doing stunts side-by-side and together. It meant adapting to different challenges and celebrating the strengths of everyone. 

TPGA: What messages would you like to give to autistic students who don't feel heard, or understand, or supported, as you once were not?

JZ: I was you and I see you. 

----

This Is Not About Me from This is not about me on Vimeo.

[image: Graphic with a yellow background. 

Black text on the left reads, "this is not about me: a story about growing up non-speaking". On the right are black-and-white photos of Jordyn, a young white woman with a large gerber daisy blossom superimposed over her face, and a small Boston terrier-looking dog.]

Disclosure: Thinking Person's Guide to Autism is a partner on the This Is Not About Me film.

Friday, October 8, 2021

Little Victories: Publishers Need to Stop Framing Resenting Autistic Children as "Love"

Shannon Des Roches Rosa
twitter.com/shannonrosa

"What does the story you tell matter, if the world is set upon hearing a different one?" -Ta-Nehisi Coates

After my autistic son was diagnosed 18 years ago, I went looking for autism and parenting guidebooks. And while I found exactly zero mainstream resources for helping him be a happy and well-adjusted autistic person, I did find a sizable industry centered on "fixing" him, whether through ABA therapy, specialized diets, supplements, or worse

It's not surprising that humane strategies for parenting autistic children were not selling books in 2003, as the autism zeitgeist had only just moved on from blaming autism on "refrigerator mothers" and exploded into an autism-vaccine-epidemic panic. That era's media outlets would typically only frame autistic children as damaged goods who needed to be reshaped into "normal" children.

But we have long since debunked the autism epidemic and vaccine causation myths, plus autistic people are increasingly writing their own stories about the supports they needed as kids—so why does the publishing industry keep pumping out books about parents shaming their kids for being autistic, like To Siri With Love, or forcibly traumatizing their autistic kids, like Autism Uncensored? These books receive rapturous praise and acclaim from the mainstream media, while parallel outrage and horror from autistic people and their allies are mostly ignored.

[image: Cover of the graphic novel Little Victories, by Yvon Roy.]
Our autistic kids, and their parents, deserve better. And that is why I fume when new books like Yvon Roy's Little Victories are touted by the mainstream press as "tender" and "uplifting." There is nothing to praise about a dad's determination to "overcome" autism; such stories are horrifying to parents like me who fight for acceptance, and to autistic people who just want accommodations and understanding so they can live their lives. 

Little Victories is yet another book about a parent resenting having a autistic child (even while very obviously loving them). About forcing that autistic child to make eye contact. About forcing him to tolerate sensory sensations that are painful for him. About forcibly disrupting a child's routines so he won't "cling" to them, even though autistic children find sameness soothing and reassuring

These are the "little victories" this graphic novel celebrates, even though anyone who pays attention to what autistic people themselves say understands that such approaches are much more likely to harm autistic children than to help them.

Little Victories is an example of a "heroic" autism parent memoir trend that needs to die. But why is it that Roy thinks he is the only one who can help his son, that he doesn't need to consult experts (let alone autistic insights), and that he can figure out what his son needs all on his own? Maybe it's a matter of ego, but I think it's also likely that Roy couldn't find the kind of resources that he and his son needed, and so he took his own path. And, in his ignorance about autism, made some really bad choices.

There is no shortage of parents clamoring for books to help them parent their autistic kids, but instead of misguided books like Little Victories, they need books that take them through an honest and compassionate journey from diagnosis to understanding. That show autistic children being recognized and adored for who they are, not being "lovingly" forced to submit to society's narrow social norms. That celebrate what THEIR love and joy look like, rather than what their parents think they should be. That explain what THEIR socializing looks like, rather than what parents think "social skills" mean. That teach what THEIR communication needs are, rather than forcing them to communicate acceptably and with speech-only. That talk about what THEIR boundaries are, rather than bulldozing their personal space "for their own good."

I wish Little Victories was that book, especially as people love learning through storytelling. But it isn't. So please, avoid this deceptively heartwarming tale. It mostly only models how to make questionable choices as a parent of an autistic child, and that can only hurt autistic children. 

And, publishers? Maybe start publishing books on autism and parenting that don't suck.

----

Disclosure: I accepted a complimentary copy of the book from the publisher because I am a cockeyed optimist.

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. 

----

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.”]


----

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.