The Cognitive Distortions that Feed Neurodiversity Radicalism

A young woman on the spectrum sheds light on some forces behind anti-parent cyberbullying.

A series of cognitive distortions leads to the excesses of neurodiversity radicalism, including parent shaming, writes the author. [Stock photo of funhouse mirrors]

A series of cognitive distortions leads to the excesses of neurodiversity radicalism, including parent shaming, writes the author. [Stock photo of funhouse mirrors]

By Lucy Kross Wallace

A year ago I was en route to becoming the type of "neurodiversity activist" who cyberbullies autism parents in the name of tolerance. 

I had every hallmark of such an activist: a recent ASD diagnosis, a desire to partake in the social justice that surrounded me, irrational self-confidence, ignorance of the more severe end of the autism spectrum, and a Tumblr account. 

Clearly, if I’m writing this blog post, a lot has changed since then. While I don’t wish to excuse my former self or the behavior of anyone who harasses parents or trivializes autism, I do want to elucidate a series of cognitive distortions that accelerate radicalization. Eventually, these distortions can motivate extreme behavior, including harassing autism parents online, calling them “MaRtYr MoMmIeS,” and accusing them of wanting to murder their children. Disturbing as these actions are, my experience as a former ideologue shows that there’s a way out of this rabbit hole.

Autism as an Identity

The path toward neurodiversity radicalism begins with the adoption of autism as an identity and the perception that being autistic grants a person authority on all autism-related matters. My slide into this mindset started innocently enough. After years of mental illness and unsuccessful treatment, I finally had a diagnosis that explained my impairments and idiosyncrasies, enabling my doctors to help me transition from psych ward patient to college student. Reading about autism online gave me a vocabulary to describe my experiences and reassurance that I was "different, not less."

But of course, in classic Asperger’s fashion, I took this useful framework to an unhealthy extreme. "Autism is a part of who I am" became "autism is a critical part of who I am," which then became "autism is who I am." I was inspired in particular by the Autistic Self Advocacy Network, whose slogan – "nothing about us without us" – invoked a sense of urgency, suggesting that any failure to insert oneself aggressively into conversations about autism constituted a betrayal of the cause. The motto "autistic people are the real autism experts" appealed to me for the same reason. It offered automatic street cred that I could use however I wanted. Who wouldn’t want to be more knowledgeable than a doctor or parents pouring themselves into care for autistic children simply by virtue of having a certain diagnosis?

Identitarianism Fosters a False Equivalence

Next, due to the concept-creep associated with the word "autism" and the collapse of multiple diagnoses into one autism spectrum category, we suffer an illusion that different people with “autism” have more in common than they actually do. In my dark days of advocacy, I fought fiercely against the notion that my autism was any less severe than anyone else’s, drawing on bizarre, nonsensical analogies I’d found online that equated autism to cupcake flavors and insisted that a single person can be both high- and low-functioning. Of course, these arguments were ridiculous, but admitting that my autism was relatively mild would have forced me to surrender my sense of authority.

Normalization of dysfunction

The radicalization is accelerated by advocates’ stringent adherence to the neurodiversity tenet that autism is "natural" and "normal." This argument constitutes a logical fallacy and immediately crumples upon close examination, as autism is no more natural than earthquakes, syphilis, wildfires, or dementia. Moreover, the research literature strongly suggests that autism has abnormal physiological roots beginning early in brain development.

The “natural” argument is much easier to make for those with milder autism, where it may indeed be the case that stigma overshadows intrinsic impairments. For instance, there is substantial evidence to suggest that when high-functioning autistic girls "camouflage" and attempt to fit in with their peers, they run the risk of developing mental illness. This predicament highlights the importance of acceptance, rather than attempting to "fix" autism, for some people on the spectrum. It would be erroneous to overgeneralize this conclusion, but this is precisely what neurodiversity advocates do.

The fallacy of mutual exclusion

While there may be no one exemplar for neurological health, some people are clearly impaired. We can respect and love people with disabilities while hoping to remedy their impairments whenever possible. And we can fight discrimination without downplaying the value of prevention and medical intervention. Both concepts can and should exist simultaneously; they are not mutually exclusive.

Negative filtering

On Tumblr, my fellow activists and I complained endlessly about instances of "ableism," neglecting the enormous strides our society has made in accessibility and inclusion over recent decades. Negative filtering is also evident when neurodiversity advocates scorn "autism warrior parents" whose experiences are dismissed the moment they question neurodiversity doctrine.

There is also routine discounting of the positives (e.g., the parent’s love for their child), and routine catastrophizing, for example, claiming that a negative comment about autism will somehow result in a parent (no matter how devoted and loving) wishing to abuse or even murder their child. When the activist goes on to harass the parent, she genuinely believes that she is speaking out against an enormous injustice and that "silence is compliance."

Black-and-white thinking

Neurodiversity devotees tend to favor dichotomous thinking over nuance. On multiple occasions, I began reading articles on autism, only to shudder the moment I noticed a phrase like "affected by autism" or "living with autism." I had internalized the neurodiversity preoccupation with language so thoroughly that these innocent words were enough to make me discard an entire article, deciding that its contents were irredeemably bigoted. These rigid judgments fed into my belief that the world was composed of good people and ableists, matching the “you’re either with us or against us” attitude that characterizes the neurodiversity movement.

Personalization

I immediately connected conversations about autism to my own experience, never missing a chance to pipe in with my (often uninformed) opinion. This distortion plays a significant role in the harassment of autism parents: thanks to the neurodiversity movement’s obsession with language, a parent’s use of perfectly reasonable terms like “suffering from autism” or “severely autistic” are taken as personal insults, met with a self-referential chorus of “what about me?” Advocates concern themselves only with their own identities and needs, rejecting realities of severe autism that could sully their preferred portrait of the disorder. In other words, they see themselves as victims of phrases that were never meant to apply to them.

Out the Other Side

Ultimately, I was driven away from neurodiversity not by its positions but by its attitude/actions toward detractors. As I explored various criticisms of neurodiversity, I was struck by advocates’ refusal to acknowledge these concerns and by the vitriol hurled at critics.

The turning point came when I read two scathing responses to Jonathan Mitchell’s eminently reasonable criticism of the neurodiversity movement. The author of the first response mocks Mitchell’s struggles to navigate dating ("Perhaps if he’d stop making sexist remarks and would stop talking…about smearing feces, he’d have better luck with women") and intimates that Mitchell is responsible for his own unhappiness ("He is focused on something that will never happen [i.e., an autism cure]"). The second response, by a writer using the ironic pseudonym "Humble Aspie," begins with a clumsily photoshopped parody of a 1936 Nazi propaganda poster. Aspire to being a pure bred aryan [sic] winner? the caption reads. Join Self Loathing Autistic People #autisticdarkweb. Needless to say, this appalling attempt at satire trivializes the atrocities of the Holocaust and confirms Mitchell’s observation that neurodiversity proponents "are frequently less than cordial to those who disagree with them" – to put it mildly.

I didn’t end up reading the rest of "Humble Aspie’s" article. Instead, I slammed my laptop shut and decided that my neurodiversity days were over. If your version of justice involves cyberbullying and slander, count me out.

The Way Forward

While certain advocates have demonstrated cruel and egregious animosity toward neurodiversity dissidents, I suspect that most #ActuallyAutistic internet users would never be so vicious toward victims in real life. Social media distances us from one another, allowing us to see others as avatars for ideology rather than human beings. Much of the support for the hatred of "autism warrior parents" is tacit: casually liking a Tumblr post or a tweet, reblogging the occasional sarcastic meme, passively buying into stereotyped depictions of "curebie moms." These decisions’ apparent smallness belies their cumulative effect, making it easy for internet users to worsen the problem of bullying without grasping the consequences of their actions.

Meanwhile, those who genuinely oppose the neurodiversity doctrine may be reluctant to speak out for fear of being harassed and abused. There is no alternative to neurodiversity that offers the same instant friends, prepackaged identity, expert branding, trending hashtags, catchy slogans, appealing merchandise, and support from popular media outlets. This renders opposition to the movement virtually invisible, discouraging open criticism.

I see three crucial components of working toward change. First, we need condemnation of this bullying on a much broader scale. Leading advocacy organizations and responsible clinicians, providers, and researchers must take a firmer stance against anti-parent bullying. Explicitly stating that harassment is unacceptable should be a no-brainer.

Second, activists should engage in self-reflection and demonstrate the same awareness that they demand from others. My propensity for rigid thinking and hyperfixation contributed to my neurodiversity obsession. Once I recognized this and challenged my rigid thought patterns, I developed a much more balanced mindset, gained empathy for families and individuals affected by severe autism, and stopped wasting time on pointless quarrels about language.

Finally, I think that much of neurodiversity radicalism lies in fear – fear of stigma, fear of discrimination, and fear of being overlooked. I didn’t get the help I needed for years because doctors assumed that because my autism was mild, I should be able to manage on my own. It wasn’t until I became severely ill that anyone paid serious attention to my diagnosis. But as the National Council on Severe Autism has stated in its FAQs, the reality of low-functioning autism doesn’t mean that high-functioning autistics don’t deserve support or don’t have a real disability. This is not a competition, and when we treat it like one, everybody loses.

Lucy Kross Wallace is an undergraduate student at Stanford University.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.

My Sons with Autism Are Isolated and Traumatized — and Pennsylvania Wants It That Way

“They are living a life of hell without purpose or choice.”

Recent photo of holes in the walls of the twins’ Pennsylvania group home.

Recent photo of holes in the walls of the twins’ Pennsylvania group home.

By Jody Weaver 

Our sons Matt and Dan are 27 year-old identical twins with severe forms of autism. They have lived together in a residential group home for the past five years, with each year becoming worse.

They have experienced increased anxiety, aggression, self-injurious behaviors, weight gain, depression, rages, increased medication use and overall poor health. They have endured living in the community in a cul-de-sac with neighbors who resent their presence. Countless police calls and ambulance rides to the ER. Both Matt and Dan have become isolated and traumatized. In general, they are living a life of hell without purpose or choice.

But it wasn’t always this way.

Before they aged out of school, they were safe, confident and happy in a Camphill residential farmstead-based learning program. They lived and worked with peers and coworkers growing organic food, caring for animals, learning trades and living an authentic purposeful life. There was no feeling of isolation and fear and often immersed in nature, which met their acute sensory needs. They had room to explore and be themselves and enjoy what nature had to offer.

But this all ended at the age of 21. 

They “fell off the cliff” and into Pennsylvania’s nightmarish adult system. Our state has one of the most restrictive interpretations of the Medicaid HCBS Setting Rule. This means that instead of having a choice that meets their need for structure, purpose and outdoor space, a small group home setting became the only option.

This has meant churning through several different homes, endless hours trapped in houses watching TV or lying in bed, poor food choices, hours of van rides or maybe a walk in a mall or around a neighborhood. They have hated it since day one and their behaviors have shown it.

They have demolished several houses multiple times. They have destroyed rooms of furniture, kicked countless holes in walls, pulled cabinets off walls and flushed so many items down the toilet that the plumbing backed up and flooded the house. The worst part of these increased behaviors is that they have physically injured and hurt staff. Staff have sustained many hits and blows to various parts of their bodies, bite wounds requiring up to 20+ stitches, broken arms and noses, fractures, ripped clothing and broken glasses, and worst of all, one sustaining a mild brain injury. 

These aggressive behaviors reflect just how frustrated, depressed and unhappy they are in their current situation. How do I know this you ask? Because our home has NEVER encountered any destruction or holes in walls by either of them. No items have been broken, ripped or destroyed. The four of us go out shopping together and eat in restaurants without any issues. Occasional behaviors are addressed and redirected and we persevere as was the case during their time in the Camphill environments. 

Now their behaviors are interpreted as their fault and they are sent to be locked up in a hospital room by the very system that is supposed to serve and protect them!

But what are the alternatives? We are unable to care for them at home, and Pennsylvania has erected nothing but roadblocks to other options. As hard as we have tried to find or create a program suitable for our sons, Pennsylvania’s answer is always “no.”

Per congressional mandate, Medicaid Home and Community Based Service (HCBS) dollars are supposed to pay for services to support severely disabled adults like Matt and Dan. There is nothing in the legislation or regulations that restricts those options to “small group homes.”

Pennsylvania’s implementation is so restrictive that it will not allow HCBS recipients to live and work at the same address. It will not allow congregate settings, even for those who benefit most from an open and roomy setting with peers. Also, it arbitrarily prohibits rural settings. They call them “isolating” when in reality, our sons have never been so isolated as they are now in this group home.

Now, our sons’ terrible situation has become even worse.

In October 2020, Matt and Dan transitioned from one group home to another with a new agency. Within the first 13 days, 911 was called 17 times due to a crisis situation with Dan. Each time, Dan was severely head banging on walls, furniture, door frames, tables and headbutting staff. He was engaged in aggressive behaviors, excessive property damage and was considered a safety risk to himself and staff. He was taken to the Hershey Medical Center Emergency Department and locked up in a Psych holding room under observation. He was held under a 302 for a total of 13 days waiting for an inpatient hospital placement. 

We were told by hospital staff that he went unattended because he had aggressive behaviors: when we visited he was not bathed, not shaved, hair not washed, teeth not brushed. Vomit matted his hair and he was often severely dehydrated. We bathed and cleaned him up at each visit and brought him food and plenty to drink. Finally, after three weeks, we could no longer watch him deteriorate in that locked empty cinderblock room! We took him home with us and declined any further inpatient waiting list. 

During Dans’ time home with us, his entire case management team (parents, agency, ODP, county, licensing, etc) has been meeting every Friday via Zoom to discuss the situation. After two and a half months, the team decided it would be good to slowly begin to transition Dan back to the group home. 

Around this same time, Matt also had aggressive behaviors and ended up in the same Psych room at Hershey on two different occasions for several days. He too exhibited dangerous explosive behaviors with excessive property damage and aggression towards staff. Matt was able to transition back to the group home after both incidents, but is having difficulty managing his anxiety. 

Last week Dan returned to the group home for a brief three-hour visit with his brother and to have dinner together. Within one hour of dropping him off, he became so violent against himself and staff that four police cars were called to the scene. An ambulance arrived and strapped him in a gurney and once again transported him back to the same locked room at Hershey.

We arrived at the group home just as the police and the ambulance were arriving. What transpired was a nightmare. There was a tug-of-war between a staff person and Dan with a large crock pot that had been cooking a roast for about six hours, filled with hot liquid. There were many frozen bags of vegetables taken from the freezer and beaten against the cabinets strewn across the kitchen floor. Many broken hard plastic dinner plates smashed throughout the dining area. Multiple holes in the walls throughout the house. Staff was assaulted repeatedly, while trying to use pads to intervene. 

Dan yelled “No, no, no” and “Mommy, Mommy, Mommy” as they loaded him into the ambulance. 

On the following call, Dan’s team recognized it was not safe for him to return to the group home nor our home given his recent behaviors. The group home provider went over Dan’s history of violent behavior and said they were afraid he would eventually seriously hurt himself or someone else if he returned to the group home. The provider even asked the question if they would be held liable if Dan seriously harmed himself. The question was asked in which setting would he be most appropriate and the provider answered, “a farmstead or lifesharing community.”

Ashley Kim Weiss, national coordinator for the nonprofit group Together for Choice, pointed out that CMS’s HCBS Settings rule does not prohibit disability specific settings and Dan is regressing and endangering himself and others because Pennsylvania is forcing Dan to be in a setting that does not meet his needs.

Some people on the call tried saying that the federal rule prohibited disability-specific settings, but Weiss shot back that this was untrue. She feels at some point someone should be held liable for all the human trauma caused by PA’s misinterpretation of the Settings Rule.

Pennsylvania’s extreme and unfounded interpretation of the Settings Rules is a mockery of the “person-centered planning” process that the HCBS Rules require. Now, one or possibly both of them face being institutionalized. How is this not a violation of their civil rights? Pennsylvania is actively harming the same group of people it’s supposed to serve and protect using our tax dollars via Medicaid.

We desperately need to expand options for community living that meets the actual needs and choices of those with severe autism. 

Jody Weaver is the mother of two sons with severe forms of autism. She lives in Pennsylvania.

Biden’s Opening Disability Policy Gambit Would Eliminate Crucial Programs for the Severely Disabled 

His plan would prohibit jobs for severely disabled people like my autistic son and daughter

Under the President’s plan, all job options would be off the table for disabled people like the author’s son Jonny, pictured here, rendering them, at best, permanent volunteers.

Under the President’s plan, all job options would be off the table for disabled people like the author’s son Jonny, pictured here, rendering them, at best, permanent volunteers.

By Jill Escher

I recently wrote about how the Biden administration’s shift toward basing federal policy on facts, metrics and reality should be good news for the growing population disabled by severe autism and related disabilities.

So we should be worried about Biden’s non fact-based — and dangerous — opening move: the pursuit of the elimination of non-competitive employment for Americans with severe disabilities. As reported by Disability Scoop, “In his first major undertaking, President-elect Joe Biden wants to do away with a decades-old option to pay workers with disabilities less than minimum wage.”

Now, it goes without saying that a great many individuals with disabilities have the mental and functional capacity to engage in competitive work, for at or above minimum wage. We should fully support Biden’s desire to provide a transition to competitive employment for every single disabled individual who wishes to meet the demands of the marketplace.

But doing away with section 14(c) of the Fair Labor Standards Act (FSLA) is an unnecessary scorched-earth tactic that will prohibit all work programs, including those serving the other, less capable, portion of the disability spectrum. 

With so many jobs and programs at stake, we should ask, why such an extreme measure? Where are the facts and data to support eliminating all non-competitive jobs for all those with disabilities? What metric for success justifies throwing out that precious job-program baby with the social-justice bathwater? 

There is in fact no data indicating that the proposed policy would help the more intensely disabled population, and, worse, the proposal to nix their jobs comes with no assurance of viable alternatives. Presumably those who lack intellectual or functional capacity to compete for minimum wage jobs are to sit at home all day in the care of their parents (who will no longer be able to work themselves, exacerbating the economic fallout) or group home providers. If they want purposeful work their only option would be as no-wage volunteers. How does that provide justice?

Moreover, FLSA 14(c) programs are not just about the wages, they often offer multiple benefits unavailable in the competitive workplace, including close supervision, therapeutic care, ongoing coaching, and social and recreational activities. A standard job supervisor is unlikely to treat seizures, change diapers or menstrual pads, allow for poor performance or absenteeism, or handle getting punched or scratched, to put it mildly. There is nothing "discriminatory" about jobs that protect the severely disabled from being fired or from the vicissitudes of the free market. Further, seen from a broader perspective, 14(c) paychecks often represent a small part of a suite of benefits, including SSI as well as Medicaid waiver programs. The job earnings — which are subject to an exacting certification process to ensure the wage is commensurate with the worker’s actual productivity — needs to be seen as part of a whole package of benefits that allow our most vulnerable citizens to participate in and contribute to society. 

If the Biden administration stands by its fact-driven approach to policy, it will accept the realities of severe disability instead of the data-free fantasy often touted by high-functioning disability rights advocates that "all people with disabilities can earn minimum wage," when any reasonable observer can see this is simply untrue. My own autistic children, for example, are nonverbal, cannot follow even simple directions without continual guidance, and exhibit an array of disruptive behaviors . It is not just unlikely, it is impossible that they would ever be hired for competitive-wage jobs. The Biden plan would extinguish any hope for their future employment. In addition, a fact-based approach would be mindful of the staggering increase in the population with severe autism (growing at least 10- to 40-fold, depending on the data source), who will need vastly more, not fewer, options for day programming and supported forms of employment for those incapable of attaining competitive work. 

The bottom line is this: retaining a non-competitive work option for the severely disabled does nothing to negate or undermine expansion of competitive employment for those capable of integrated minimum wage jobs. Both work options can and should peacefully coexist to serve a dramatically diverse disability population. 

Any pragmatic, fact-based, and indeed compassionate and humane, approach would leave 14(c) intact for our disabled fellow citizens who lack capacity for competitive employment. Please, Biden administration, let's base policy on real-life people, real-life metrics, and not a feel-good fantasy.

Jill Escher is President of the National Council on Severe Autism, an autism research philanthropist, and a housing provider for adults with autism and developmental disabilities.


See also:

NCSA Letter: We must retain non-competitive employment options for Americans with severe disabilities

"We are prepared to go to war" to save our disabled kids’ jobs

Federal Bill Would Put Jobs Out of Reach for Severely Autistic Adults

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.

Steve Silberman’s Phony History of Autism Dealt Another Blow

More NeuroTribes fictions revealed in new scholarly paper

nt book.jpg

By Jill Escher

When Steve Silberman’s grandiose fabrication of the history of autism, NeuroTribes, was published in 2015 I was stunned that anyone would take the book seriously. As explained in my 2016 review, the book was clearly an ideology-fueled work packed with “abundant and serious flaws,” including its baseless denial of any increase in autism and its characterization of autism as a mere form of neurodiversity, a “strange gift” caused by nothing more than age-old genetic variants. 

Many academics have also underscored the book’s web of misrepresentations, most recently a paper in the Journal of Autism and Developmental Disorders by historians Marga Vicedo and Juan Ilerbaig of the University of Toronto. But first some background is warranted.

In NeuroTribes, Silberman tried to sell his preposterous fable not by deploying any data or reasonable discussion of the science but instead via a sort of plot device — by conjuring a dramatic struggle between the “autism” of Leo Kanner and that of Hans Asperger. He essentially accused Kanner, one of the leading child psychiatrists of his day and well known for writing the 1943 paper first describing the condition, of malevolently sidelining countless millions of people with autism by hewing to a narrow definition of the disorder. The latent “tribe” of people with autism (who somehow escaped notice not only of Kanner but basically every clinician and chronicler through the millenia) only began to receive due recognition decades later through the English translation of work by Dr. Asperger, who we are told heroically saved many of his “tribe” from the terrible fate of extermination at the hands of the Nazis.

Great story. Too bad it’s fake.

Over the years the book has received blow after blow of discrediting by scholars and autism experts. Work by Herwig Czech, a historian of medicine at the Medical University of Vienna, showed Asperger was no hero, but instead complicit in the murder of mentally disabled children, a willing cog in the wheel of the Nazi quest for “racial hygiene.” Similarly, historian Edith Sheffer, author of “Asperger’s Lost Children,” put Asperger’s work into the correct historical context, explaining his role in creating categories to serve regime interests, including “autistic psychopathy” (which has little to do with autism as we know it today, rather, it was more akin to a personality disorder, or more accurately, a failure of the child to conform to the fascistic social spirit, as explained in my review here). Both Sheffer and Czech make it clear Asperger’s participation in the murderous regime was in the service of Nazi goals, and an active choice on his part. 

Autism experts James Harris, MD, former director of Child Psychiatry at Johns Hopkins, and Joseph Piven, MD, of University of North Carolina, addressed “recent media accounts and books” without mentioning Silberman by name, to correct his misrepresentation of Kanner as a proponent of parent-blaming, noting that Kanner had long fought against psychoanalytic theories that blame mothers. Dr. Harris called NeuroTribes a “biased portayal” driven by a “neurodiversity agenda” and has explained in detail how Kanner was a deeply compassionate clinician, and not the calculating egomaniac described in the book. Neuroscientist Manuel Casanova, MD agreed, saying the book “maligned Kanner’s role in the history of autism while praising that of Hans Asperger,” a “biased appraisal of history … made for the sole purpose of upholding some erroneous views stemming from the Neurodiversity movement.” Casanova also stresses that NeuroTribes “trivializes the plight of those more severely affected and who can’t benefit from just having better accommodations.”

Now the Canadian scholars highlight more of the book’s flaws. According to Silberman, Kanner was also a plagiarist of Asperger’s ideas, via an intermediary named Georg Frankl, a child psychiatrist who had fled Austria for the United States in 1938. However, Vicedo and Ilerbaig show that Kanner did not misappropriate Georg Frankl’s ideas or his research, as presented in NeuroTribes. The researchers note that Kanner presented his views on autism as early as 1941 and that his “proposal that autistic disturbances of the affects constituted a hitherto unidentified condition that was inborn and different from childhood schizophrenia was new.” They demonstrate that Kanner developed his views based on observations of Donald T., the first patient described in his paper, and several other children with autistic features, his knowledge of the existing literature on childhood conditions, and his interactions with many scholars. They showed Frankl was not a ‘middle man’ who passed Asperger’s ideas or specific views from Vienna to Baltimore and that Kanner adopted. 

They also correct other misrepresentations by Silberman, including his assertion that Kanner concealed his connection with Frankl, that Frankl owed Kanner his life (Kanner did not help Frankl flee Austria or save him “from the gas chambers,” as Silberman wrote), his suggestion that Kanner was tainted by a lust for fame, and factual errors about Kanner’s work history, 

The average person might ask, why does all this matter? Because to spin his fantasy of autism as neurodiversity, Silberman had to tear down Kanner. Kanner was the first to identify autism as its own category of psychiatric pathology. Kanner said autism was a very rare condition in the 1940s (and in succeeding decades). Kanner characterized autism as a serious medical condition, not a glorious diversity. So Kanner had to be slimed for Silberman’s obsession with “autism’s always been here in these vast numbers but evil clinicians like Kanner ignored it” crazy narrative. To do that, Silberman employed his vivid imagination, and not actual facts.

I said it in 2016 and I'll say it again here: 

"In closing, NeuroTribes is a phase—some complacency-manifesto-wreckage on the road toward progress in the understanding of this explosion of abnormal neurodevelopment we call autism. While I believe that like many trendy autism mishaps before it, NeuroTribes, too, shall pass, I also fear it may do lasting damage to our society's collective quest for the truth about this extremely serious explosion of brain-based disability."

Jill Escher is the President of the National Council on Severe Autism, an autism research philanthropist, a housing provider to adults with autism, and the mother of two children with nonverbal forms of autism.

References:

Casanova M. Neurotribe or Diatribe? Cortical Chauvinism website. November 16, 2015.

Casanova M. On Silberman, Austria and on Re-writing the History of Autism. Cortical Chauvinism website. March 4, 2016.

Czech, H. Hans Asperger, National Socialism, and ‘race hygiene’ in Nazi-era Vienna. Molecular Autism, 2018.

Escher J. NeuroTribes: One Step Forward, Two Steps Back for Autism. Germline Exposures website. March 28, 2016.

Escher J. The Horrifying History of Hans Asperger. Autism Society San Francisco Bay Area website. July 9, 2018.

Harris, JC. Review of Neurotribes, by Steve Silberman, and In A Different Key, by John Donvan and Caren Zucker. Journal of the American Academy of Child and Adolescent Psychiatry, 2016. 55;729–735 (paywalled).

Harris JC and Piven J. Correcting the record: Leo Kanner and the broad autism phenotype. Spectrum News website. April 26, 2016.

Sheffer, E. Asperger’s children: The origins of autism in Nazi Vienna. New York: W.W. Norton. 2018.

Silberman, S. Neurotribes: The legacy of autism and the future of neurodiversity. New York: Avery. 2015.

Vicedo M and Ilerbaig J. Autism in Baltimore, 1938–1943. Journal of Autism and Developmental Disorders, 2020.




Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.


When Covid Strikes the Autism Caregiver

Covid’s incapacitation of autism parents offers a glimpse of what’s to come in the future.

(Stock photo)

(Stock photo)

By Kimberly Christensen

We are a family of five, blessed with three daughters, the oldest of whom, age 21, has severe autism. We have been diligent about mask wearing, not socializing and not traveling. Traveling has never really been an option even in pre-Covid days because, honestly, severe autism doesn’t do air travel or even airport bathrooms. None of our children are attending school because I have asthma and we knew if I caught Covid, it would be bad. 

I was right.

I didn’t expect Covid to strike us all at the same time. My husband caught it first and was bedridden. Our daughters fell ill the next day running low fevers. I woke up the following day with a sore throat and as soon as the fever started, I was in a panic. Our autistic daughter needs round the clock care to manage her behaviors and assist with daily living skills such as toileting, showering and meal preparation. 

I was terrified my husband and I would end up in the hospital with no one to care for our autistic daughter. I reached out to our Regional Center worker (we live in California) to see about temporary placement in case we were both hospitalized. The only response I received was that a few residential care homes were working with clients that had been exposed to the virus, but our daughter may need to isolate for 10-14 days. She already had the virus at that point.

Fortunately, my husband was bedridden for only 3 days. He had a mild case and recovered quickly. All three of our daughters were relatively mild too. But I had two Emergency Room visits, ran a fever of 103 for five days and developed pneumonia in one of my lungs. I spent three weeks barely able to get out of bed, and a month later I still consider myself recovering. I’m incredibly thankful that my husband was well enough to be her caregiver during that time. But I still have this fear of what would have happened if we were both hospitalized.

Covid has shed a spotlight on the weaknesses in our current system that depends on parents as full-time caregivers for our developmentally disabled adult children. We need more support, more housing, more trained professionals who know and understand how to care for our children. We need this especially now during a global pandemic that threatens the health and safety of us all.

Kimberly Christensen is the mother of a young woman with severe autism. She lives with her family in California.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.

The Reason I Jump: D- Documentary, A+ Propaganda

New film’s noble aims are gutted by the pushing of pseudo-science

reasonjump.jpg

Film Review

By Jill Escher

The new film The Reason I Jump, due for release on January 8, is a multifaceted adaptation of a best-selling book ostensibly written by Naoki Higashida, a 13 year-old Japanese boy with autism.

I say ostensibly because at the time it was published in English I searched for evidence that the book was indeed written by the autistic teen, but came up empty. Autism experts also strongly questioned the validity of the authorship (see Fein and Kamio 2014). So I was relieved to learn of this new documentary because finally, I thought, we would have the chance to see the author typing or letterboarding his poetic words.

But no. No Naoki. The protagonist, about whom there remains much controversy, was conspicuously missing from the film. Instead we have an adorable young actor with autism who runs and squints and explores as a narrator reads passages from the book. We also meet the book’s English language co-translator and popularizer, the acclaimed British novelist David Mitchell, who is the father of a boy with autism, as well as five young adults with autism whose stories the filmmakers loosely weave into the book’s narrative about a hypersensitive, secretly talented and processing-disorganized inner life with autism.

Along this journey we are asked to simply take it on faith that Higashida (and not, say, his parent or facilitator) authored the book. This struck me as absurd until I realized the film was not in reality a documentary adhering to any norms of journalistic standards but instead an act of heartfelt propaganda. This leap of faith required of the viewers is foundational to the fim’s mission: to convince you that despite what you see on the surface, you must suspend your disbelief and see nonverbal autism as a sensory-motor deficit masking fairly normal cognition. 

If only we ignored patent impairments and presumed normal cognition! If only we taught our kids to point to letterboards to spell out complex thoughts! Then we would stop systematically suppressing our children’s inner genius, the film suggests. And in this battle for a transcendent neurodiversity, actual evidence hardly matters.

Now, it goes without saying that spreading the gospel of autism acceptance and lauding achievements of people with autism are unequivocally Good Things. We are fortunate, for example, to meet an exceptionally talented young artist from India named Amrit who creates colorful, joyous tableaus of people, drawn with a tightly controlled expressiveness. But the film also celebrates debunked and discredited facilitated communication, recently enjoying something of a spiritual revival under labels such as Spelling to Communicate or RPM. It insinuates that parents who fail to “presume competence” are somehow oppressive and failing their disabled children. It sells autism as a type of locked-in syndrome or large-scale apraxia, a wishful-thinking assertion that flies in the face of logic and decades worth of evidence.

Aside from the absent Mr. Higashida, the uncritical embrace of facilitated communication was most evident in the portrayal of two friends in the U.S., Ben McGann and Emma Budway, and an interview with Elizabeth Vassoler, founder of Spelling to Communicate. Emma’s mother is shown holding a letterboard and prompting the two young adults to answer questions about Argentine history. Ben, who is a board member of the Autistic Self Advocacy Network, taps repeatedly on the board while Emma’s mother reads out letters (which may or may not correspond with Ben’s tapping, as it struck me that there were more taps than letters read) which spell out that his civil rights were denied when he was in special education.

Now, are Ben and Emma actually expressing complex thoughts independently? Perhaps they were — every person with autism has a different range of competencies — but my point is that you really can’t tell. For example, that Emma spells out “WIFE” in response to a question about Eva Peron could have been practiced off camera, it could have been prompted by how her mother held the board, it could have been cherry-picked from among other takes that were less successful. We are not given enough information to reach conclusions.

Given the sordid history of outright fraud in facilitated communication (FC), a practice that resulted in false criminal accusations against parents, the deprivation of autistic subjects of their true voices, loss of out of pocket costs for desperate parents, and outright condemnation from the American Speech Language Hearing Association (which likewise has taken the position that Spelling to Communicate lacks an evidence base), it behooves us in the autism community, not to mention any responsible filmmaker, to start from a place of healthy skepticism. Why does a facilitator have to hold the letterboard? Why can’t the spellers point to letters fixed on a table or music stand? Why can’t other people, say one of the film crew, hold the board instead? The director did not even scratch at the surface, instead he simply diverts our attention, and emotions, with dramatic background music. Moreover, this second wave of FC is notorious for resisting attempts to objectively ascertain the independence of the spelling, perhaps in light of how easily tests as simple as blinding the facilitator exposed the fraudulence of FC in the past.

Of course many people with significantly disabling autism and related disabilities can independently communicate through typing or assistive communication devices, such as those using graphical icons. I would never criticize independent communication. My concern here is only with the facilitated aspect. I have even defrauded myself on this account. My precious nonverbal daughter had learned to write her name independently so I thought she would be ready for more. With only the lightest possible touch on her arm she spelled “DOG,” “CAT,” “PIG,” and similar. So after much practice when it seemed she had mastered such words I removed any touch, and very carefully and clearly, with visual cues, asked her to spell them. She wrote “SOPHIE,” “SOPHIE,” and “SOPHIE.” I learned that even the very lighest of prompts can radically change output, a phenomenon documented numerous times in the scientific literature.

To be fair, the film has certain notable strengths. For example, a visit to a gutsy family in Sierra Leone fighting a culture that saw their disabled daughter Jestina as a devil child, though narratively disjointed from the rest of the film, was a clear highlight (indeed this topic deserves a film of its own). In addition, a young British man named Joss, whose parents are two of the film’s producers, is shown with his full autistic impairments on display, and with an admission he had to be placed in a care home due to aggression. When Joss’s father chokes up sharing his fears about Joss’s care after their deaths, he speaks for all us autism parents facing the same horrific predicament. Additionally the film’s creative attempts to invoke the chaotic audio-visual world of autism are commendable.

At the end, we see Ben and Emma preparing to move into their own independent living apartments, seemingly bringing some closure to the “what happens when we’re dead” question invoked by Joss’s father. But on this account the film fails us again, as we are provided no information whatsoever about the arrangement, how it was achieved, how the supports operate, who is paying, etc. As with most of the film, we are fed grandiose ideas, vibrant cinematography and an emotional musical score, but little of substance.

[You can learn about opportunities to view the film here.]

Jill Escher is the President of the National Council on Severe Autism, an autism research philanthropist, a housing provider to adults with autism, and the mother of two children with nonverbal forms of autism.

References and resources:

American Speech Language Hearing Association, Facilitated Communication and Rapid Prompting Method: CEB Position
https://www.asha.org/ce/for-providers/facilitated-communication-and-rapid-prompting-method-ceb-position/

Donvan J, Zucker C. In a Different Key. 2016 Crown Publishers, New York. (See Chapters 33, 34 documenting past abuses of FC.)

Fein D, Kamio Y. Commentary on The Reason I Jump by Naoki Higashida. J. Developmental & Behavioral Pediatrics 2014;33(8): 539-542. (Here, unfortunately paywalled but you can read the first page.)

Mostert M. Facilitated communication since 1995: a review of published studies. J Autism Developmental Disord. 2001;31:287–313. (Here, but unfortunately paywalled. The abstract reads: “Previous reviews of Facilitated Communication (FC) studies have clearly established that proponents' claims are largely unsubstantiated and that using FC as an intervention for communicatively impaired or noncommunicative individuals is not recommended. However, while FC is less prominent than in the recent past, investigations of the technique's efficacy continue. This review examines published FC studies since the previous major reviews by Jacobson, Mulick, and Schwartz (1995) and Simpson and Myles (1995a). Findings support the conclusions of previous reviews. Furthermore, this review critiques and discounts the claims of two studies purporting to offer empirical evidence of FC efficacy using control procedures.”)

Schlosser RW et al. Rapid Prompting Method and Autism Spectrum Disorder: Systematic Review Exposes Lack of Evidence. Review Journal of Autism and Developmental Disorders, 2019. https://doi.org/10.1007/s40489-019-00175-w. (Here, but unfortunately paywalled. The abstract reads: “This systematic review is aimed at examining the effectiveness of the rapid prompting method (RPM) for enhancing motor, speech, language, and communication and for decreasing problem behaviors in individuals with autism spectrum disorder (ASD). A multi-faceted search strategy was carried out. A range of participant and study variables and risk and bias indicators were identified for data extraction. RPM had to be evaluated as an intervention using a research design capable of empirical demonstration of RPM’s effects. No studies met the inclusion criteria, resulting in an empty review that documents a meaningful knowledge gap. Controlled trials of RPM are warranted. Given the striking similarities between RPM and Facilitated Communication, research that examines the authorship of RPM-produced messages needs to be conducted.”)

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