The DSM and Prevalence

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence. 

 Dr. Allen Frances, the lead editor of previous version of the manual, says that the diagnostic instructions are confusing, so the diagnosis will vary from rater to rater and place to place. “It will be even more impossible than it is now to determine rates of autism and why they shift so much over time.”   A more recent study says that prevalence estimates are likely to decline under DSM-5 – but it cautions that policies for service eligibility and diagnostic tools will change in response to the revised criteria. Clinicians may react by looking for more symptoms to back up ASD diagnoses.

And DSM-5 is not the last word.  Whereas the titles of previous editions included Roman numerals (DSM-III, DSM-IV), the new one instead has an Arabic numeral to make it easier to designate revisions. The future will bring DSM-5.1, DSM-5.2, and so on, which may include further changes in the way we describe and diagnose autism.

 Allen Frances at NYT:

The rapid rise in autism cases is not because of vaccines or environmental toxins, but rather is the result of changes in the way that autism is defined and assessed — changes that I helped put into place.

In the late 1980s and early 1990s, I chaired the task force charged with creating the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders, or the D.S.M.-IV. Sometimes called the “bible of psychiatry,” the D.S.M. influences medical practice, insurance coverage, education and treatment selection.

In the third edition of the D.S.M., published in 1980, autism was tightly defined and considered extremely rare. Criteria for the diagnosis required a very early onset (before age 3) of severe cognitive, interpersonal, emotional and behavioral problems.

But my task force approved the inclusion of the new diagnosis, Asperger’s disorder, which is much milder in severity than classic autism and much more common. In doing so, we were responding to child psychiatrists’ and pediatricians’ concerns for children who did not meet the extremely stringent criteria for classic autism, but had similar symptoms in milder form and might benefit from services.

Based on careful studies, our task force predicted that the addition of Asperger’s disorder would modestly increase the rate of children given an autism-related diagnosis. Instead, the rate increased more than 16-fold, to one in 150 from an estimated one in 2,500 in the span of a decade. It has been climbing more gradually ever since and is one in 31 today. Our intentions were good, but we underestimated the enormous unintended consequences of adding the new diagnosis.

The resulting explosion in cases included many instances of overdiagnosis — children were labeled with a serious condition for challenges that would better be viewed as a variation of normal. It also sowed the seeds of conspiracy theories and anti-vaccine beliefs as people wondered how to explain the rising cases.

Many large studies have come to the same conclusion: Vaccines don’t cause autism. The role, if any, of environmental toxins is still to be determined, but there is no known environmental factor that can explain the sudden jump in diagnoses. The changes we made to the diagnosis in the D.S.M.-IV can.

Why did autism-related diagnoses explode so far beyond what our task force had predicted? Two reasons. First, many school systems provide much more intensive services to children with the diagnosis of autism. While these services are extremely important for many children, whenever having a diagnosis carries a benefit, it will be overused. Second, overdiagnosis can happen whenever there’s a blurry line between normal behavior and disorder, or when symptoms overlap with other conditions. Classic severe autism had so tight a definition it was hard to confuse it with anything else; Asperger’s was easily confused with other mental disorders or with normal social avoidance and eccentricity. (We also, regrettably, named the condition after Hans Asperger, one of the first people to describe it, not realizing until later that he had collaborated with the Nazis.)

Musk and Autism

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families -- including casual prejudice against disabled people.  

Trump has a long history of using the r-word, and Lordy, there are tapes.

Elon Musk has said that he is autistic, so it is odd that he uses the word, a term that bigots throw against autistic people.

Julia Metreaux at Mother Jones:

In September, Elon Musk amplified a post from Autism Capital—a pro-Trump X account that he often reposts—that read: “Only high T alpha males and aneurotypical people (hey autists!) are actually free to parse new information with an objective ‘is this true?’ filter. This is why a Republic of high status males is best for decision making. Democratic, but a democracy only for those who are free to think.” Musk called the claim, which originated on the infamous web forum 4chan, an “interesting observation.” His repost was viewed 20 million times.

...

A society with too much empathy—the kind of society Musk claims we live in—wouldn’t be full of ostracized, bullied kids who grow into adults like him. A society that supported, or at least more thoughtfully approached, autistic traits wouldn’t produce 4chan boards full of his Aspie supremacist fans. It would allow people like Musk to speak openly about being autistic, without retreating from the word, and to engage with initiatives led by autistic people, not figures like Health and Human Services Secretary Robert F. Kennedy Jr. who describe autism as an “injury” that renders people incapable of holding jobs, making art, or playing sports.

Aspie supremacists do real harm to autistic people in their embrace of gendered, racialized stereotypes, and in drawing spurious lines between themselves and anyone they consider “severely” autistic. Musk may simply be a jerk, but he’s a jerk with a tremendous platform—and one whose fans loudly, publicly connect his shitty personal behavior and fascistic policies to “mild” autism.

“It’s really frustrating to be caught in this place where we’re trying to be inclusive of all autistic people, and there are such polarizing opinions and perspectives about autism,” says Jules Edwards. “It causes this additional challenge when we’re advocating for inclusion and access, trying to educate people about what is autism versus the idea of ‘good autism’ or ‘bad autism.’”

Bill Gates Identifies as Autistic

In The Politics of Autism, I discuss autism history.  Some speculate that many famous innovators and scientists were on the spectrum.  Elon Musk identifies as autistic.  And now, so does Bill Gates.  Watch the first two minutes of this WSJ interview:

https://www.wsj.com/arts-culture/bill-gates-memoir-410d7ff5?mod=itp_wsj,djemITP_h 

If I were growing up today, I probably would be diagnosed on the autism spectrum. During my childhood, the fact that some people’s brains process information differently from others wasn’t widely understood. (The term “neurodivergent” wouldn’t be coined until the 1990s.) My parents had no guideposts or textbooks to help them grasp why their son became so obsessed with certain projects, missed social cues and could be rude and inappropriate without seeming to notice his effect on others.

What I do know is that my parents afforded me the precise blend of support and pressure I needed: They gave me room to grow emotionally, and they created opportunities for me to develop my social skills. Instead of allowing me to turn inward, they pushed me out into the world—to the baseball team, the Cub Scouts and other families’ dinner tables. And they gave me constant exposure to adults, immersing me in the language and ideas of their friends and colleagues, which fed my curiosity about the world beyond school.

Even with their influence, my social side would be slow to develop, as would my awareness of the impact I can have on other people. But that has come with age, with experience, with children, and I’m better for it. I wish it had come sooner, even if I wouldn’t trade the brain I was given for anything.

Musk and Self-Diagnosis

In The Politics of Autism, I discuss autism history.  Some speculate that many famous innovators and scientists were on the spectrum.  Elon Musk identifies as autistic.

Stuart Vyse at Skeptical Inquirer:

On May 8, 2021, in an awkward opening monologue, Elon Musk created a small controversy when he claimed to be making history as the first person with Asperger’s to host Saturday Night Live. The next day, Marlow Stern of The Daily Beast pointed out that former cast member Dan Aykroyd has Asperger’s Syndrome and returned to host in 2003. As a secondary issue, the intelligencia were quick to point out that the Asperger’s diagnosis was eliminated in 2013 and blended into Autism Spectrum Disorder (American Psychiatric Association 2013), so more accurately Musk had autism or ASD. However, rarely mentioned in the aftermath was the origin of his diagnosis. According to his biographer Walter Isaacson (2023), Musk was never diagnosed by a qualified mental health professional. He diagnosed himself. And Musk is not alone. He is part of a growing do-it-yourself trend: self-diagnosis.

Two Views of Autism

In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

H. Holden Thorp has a piece at Science titled "Bridging Two Views of Autism."

Last week, Science, Science Advances, and Science Translational Medicine published an extensive set of papers from the PsychENCODE Consortium, a multi-institutional collaboration whose aim is to study the genetics of neuropsychiatric disorders such as bipolar disorder, autism spectrum disorder, and schizophrenia. The papers, collectively called PsychENCODE2, apply advances in single-cell and multi-omic technologies to postmortem brain tissue to elucidate factors that may help explain and develop treatments for neuropsychiatric conditions. The new insights gained from these considerable data will hopefully inspire new ways in which the clinical community can find common ground with researchers, something that is not always guaranteed in the contentious mental health field.

In autism, perhaps more than any other such condition, there is great tension between the researchers focused on the mechanisms and potential treatments of autism as a disease and the neurodiversity community that views autism as a difference to be accommodated, not a disease to be cured. As an autistic person and a journal editor, I live in both worlds and talk to folks on both sides. It is unlikely that many of the most passionate adherents to either model will overcome their disagreements anytime soon. The neurodiversity community, which believes that it is a biological fact that people experience and interact with the world around them in many different ways, views a disease model as disrespectful to the humanity of autistic individuals, whereas the medical model community is motivated by a desire to end suffering for autistic patients—especially those who require lifelong support—and their families. I take great inspiration from both camps: the exceptional neuroscience, on one hand, and the compassion and strength of the autism community, on the other. I’m also an optimist who is always looking for common ground, which does exist if you look for it.

Perhaps most notably, the continued development of a solid biological explanation for autism helps dispel early notions, propagated most prominently by psychiatrist Leo Kanner in the 1940s, that autism was a result of toxic parenting, not a biological difference, and that autism was a very narrow category applying only to individuals with considerable impairment. Kanner also claimed to have been the first to describe autism instead of the physician Hans Asperger, who had a broader vision for autism similar to the idea of the autism spectrum we consider today. Yet, Asperger referred patients to Nazi eugenics programs, which is partly why Asperger’s syndrome is no longer used as a diagnostic term for autistic individuals. Given this fraught background, it’s no wonder that there has always been tension in the field. Laura Klinger, executive director of the University of North Carolina’s TEACCH program that is rooted in the neurodiversity approach, agrees that establishing the biological basis of autism should not come with controversy. “Understanding how people become neurodiverse is an important research question,” she said.

Complicating matters, placement on the autism spectrum is often accompanied by other conditions, such as anxiety, depression, epilepsy, and gastrointestinal problems. Klinger and neuroscientist Simon Baron-Cohen, who leads the Autism Research Centre at the University of Cambridge, both told me that although autistic people may push back on the idea that there are biomarkers for autism, rejecting the notion that it is a disease that should be treated, more insight into the coexisting conditions may be welcomed. A PsychENCODE2 study suggests that further research may lead to the ability to categorize autism into subtypes that occur along with these other diagnoses. Klinger’s own research centers on therapy for anxiety, depression, and cognitive decline in autistic adults. “If there was something in the genetics that would allow me to be more personalized in my therapy,” she said, “that would be a great advance.” Such progress would help Klinger and other clinicians know when to prioritize treating autism with therapy or treating the coexisting conditions with pharmaceutical approaches.

More work lies ahead for better understanding the biological details of mental illness. At the same time, acceptance and support for individuals with mental health conditions and neurodevelopmental disabilities will hopefully continue to grow. Tension between how to respond to these two trends will persist, but the scientific community can work to find ways in which both are mutually reinforcing.

Another Insurrectionist Tries the Autism Defense

In The Politics of Autism, I write:

There is no evidence linking autism to planned violence, but in recent years, mass shootings by young men have led commentators in the mainstream media and on the Internet to suggest such a connection. After the 2007 Virginia Tech massacre, for instance, news reports said that the shooter was on the spectrum. The speculation made little sense to anyone who understood autism. Whereas autistic people have language delays and deficits, the killer had learned English as a second language — and learned it well enough to major in the subject in college. Later on, it turned out that he had an entirely different problem, a social anxiety disorder. Adam Lanza, who committed the Sandy Hook massacre in 2012, may have had an Asperger’s diagnosis, but his father emphasized that his behavior stemmed from the psychiatric illnesses that he also had. Nevertheless, the media speculated about Lanza’s place on the spectrum, which worried autism parents. One mother of an autistic child wrote: “This is the first time I'm truly afraid for him. Afraid of what may happen to my son with autism at the hands of a stranger; a stranger who has chosen to buy into the media-fueled misinformation that individuals diagnosed with an Autism Spectrum Disorder are dangerous and capable of horrendous acts of terror and violence.”

Daniel Barnes and Ryan J. Reilly at NBC News:

 A Jan. 6 defendant, in opening arguments at his trial before a jury Wednesday, compared himself to Supreme Court Justice Brett Kavanaugh and said he liked that members of Congress were fearing for their lives during the Capitol attack.Brandon Fellows at the U.S. Capitol in 2021.U.S. District Court for the District of Columbia

Brandon Fellows was initially arrested 10 days after the Capitol riot in January 2021. He first faced misdemeanor charges but was later indicted on a felony charge of obstruction of an official proceeding and aiding and abetting.

Fellows had been held in pretrial custody since mid-2021. He was detained because, while he was on pretrial release in his Jan. 6 case, he called his probation officer’s mother and reportedly harassed a former girlfriend, in violation of a state protection order. In recent court filings, he called U.S. District Judge Trevor McFadden corrupt and biased.

Jury selection took place Tuesday, and opening arguments began Wednesday, with Fellows representing himself before jurors.

Fellows told jurors that he believes Jan. 6 "was a beautiful day." He said he’s on the autism spectrum and had been diagnosed with Asperger’s syndrome, as well as attention-deficit/hyperactivity disorder.

Fellows referred Elon Musk, calling the owner of the social media platform X, previously known as Twitter, a "high-functioning person" he looked up to, and he said people with Asperger's "are more susceptible to manipulation." He told jurors that he would express beliefs they would find abhorrent.

“I truly do like the fact that those senators and congressman were in fear for their lives,” Fellows told jurors near the end of his roughly 19-minute opening statement, doubling down on statements he had made on social media in the wake of the riot.

AJ McDougall at The Daily Beast:

A Jan. 6 defendant who represented himself in court after being accused of smoking marijuana in a senator’s office during the Capitol attack was held in criminal contempt on Tuesday, with the judge overseeing his trial smacking him with a five-month jail sentence before jury deliberations in the case were even set to begin. Brandon Fellows, 29, has been in custody since June 2021 on a federal felony charge of obstruction of an official proceeding and aiding and abetting, as well as a number of other misdemeanors. As his trial, which began last week, wrapped up on Tuesday, Fellows took the stand. Asked about sitting down in the office that belonged to Sen. Jeff Merkley (D-OR), Fellows remarked, “I didn’t know it was a senator’s desk. It felt very comfy.” He also insisted that the rioters “had the right to overthrow” the government on Jan. 6. Later, as U.S. District Judge Trevor McFadden explained to Fellows that he had forfeited his right to a rebuttal, Fellows replied, “I would expect nothing less from a kangaroo court,” according to NBC News. His contempt sentence was first reported by a Politico journalist. The jury is expected to begin deliberating on Fellows’ charges on Wednesday morning.

Asperger and Other Labels Are Controversial

From the preface to The Politics of Autism.

A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.

The term "Asperger Syndrome" is falling into disuse because of changes in the DSM and revelations that Hans Asperger was a Nazi collaborator.

 Zoë Corbyn at The Guardian:

Autistic Not Weird’s [Chris] Bonnello periodically surveys the autistic community on a range of autism-related issues (his 2022 survey had more than 11,000 respondents, mostly from the UK and US, about two-thirds of whom were autistic). While in 2018 about 51% said they used Asperger’s syndrome in relation to their own personal situation or when discussing autism, in 2022 it had plummeted to under 19%. The Hans Asperger revelations occurred between the surveys, notes Bonnello, and while it isn’t personally why he moved away from Asperger’s, it was likely a big driver.

...

Yet while many self-advocates now embrace life on the spectrum, there are different views among experts about whether things are working quite as they should, and how to fix them. One issue is whether people who would have been diagnosed with Asperger’s previously are falling through the cracks under the new system. Fred Volkmar, a professor of child psychiatry at Yale University, led the group that first introduced Asperger’s under DSM-IV. (He was originally on the DSM-5 group but resigned over process issues.) A specific problem Volkmar still sees a decade on is that the definition of ASD was effectively made more stringent under DSM-5 – and people at the margins, who might have qualified for Asperger’s or atypical autism, are missing out on a diagnosis as a result. Those people need identifying too so they can get support. The reduction rate in diagnosis under DSM-5 for those with Asperger profiles was recently estimated, based on a meta-analysis of studies, to amount to about 23% – though Volkmar thinks the number is likely to be higher.

Yet Catherine Lord, a professor of psychiatry at UCLA, who was on the DSM-5 group, disputes that a significant minority of people are getting lost. The reality of DSM-5, she says, is that it simply just isn’t very specific. Symptoms, for example, don’t even have to be current (they can be historic). “Almost all of us, by history, would meet some of the criteria for autism,” she says.

“If people are slipping through the cracks, then other people are slipping in,” says Francesca Happé. Diagnosis rates have increased exponentially over the past 20 years in the UK, she says, with the biggest increases in women and people over the age of 19. And the best interpretation isn’t that DSM-5 has necessarily changed much but that diagnosis is being more widely applied and there’s a historical backlog (in the past, adult diagnosis was uncommon and it was seldom considered that women could have Asperger’s or autism)

Amy Schumer on Her Husband's Autism

 In The Politics of Autism, I discuss depictions of ASD in popular culture.  

Christy Pina at Hollywood Reporter:

Amy Schumer’s opening monologue on Saturday Night Live touched on abortion access, the upcoming midterm elections and her husband’s autism spectrum disorder.
...

Schumer also discussed her husband, Chris Fischer’s, autism spectrum disorder, which used to be called Asperger’s until it was discovered that Dr. Hans Asperger had Nazi ties. “Kanye?” she joked, before going on to say that Fischer’s diagnosis has been really positive for their family.

“We understand so much more about his behavior,” she said. “And it’s given him so many tools like, now if somebody’s in the middle of a long, boring story, he will straight up just walk away. And when people find out that he has autism, like they don’t know much about it. They’re like, ‘Oh does he love to count? Should we drop a bunch of straws on the floor, and he can gather them and count them?’ I’m like, ‘Yeah, that sounds pretty fun.'”

See the clip starting around 3:42: 

Autistic Pride Day

In The Politics of Autism, I discuss the neurodiversity movement.   

From Firstpost (India):

To create more awareness about autism in society, Autistic Pride Day is celebrated on 18 June. The day draws attention to individuals with Autism Spectrum Disorder (ASD) and celebrates their identity as unique individuals.

The day is run by people with ASD instead of non-governmental organisations. The rainbow infinity symbol represents Autistic Pride Day as it characterises the diversity of people with ASD and the infinite opporunities within the autistic community.

What is autism or ASD?

According to the World Health Organisation, ASD “constitutes a diverse group of conditions related to development of the brain.” The disorder is characterised by difficulties in social interaction and communication. People with ASD often have atypical behaviours and patterns such as unusual reactions to sensations as well as difficulty in moving on from one activity to another.

According to the WHO, about one in 100 children is diagnosed with autism.

History of Autistic Pride Day

Autistic Pride Day was first marked in 2005 by the Aspies For Freedom (AFF) organisation so that people with ASD could celebrate their neurodiversity and differences. Since then, the day has been marked globally every year.

Elon Musk

In The Politics of Autism, I discuss autism history.  Some speculate that many famous innovators and scientists were on the spectrum.  

Last year, Kathleen Doheny wrote at WebMD:

When billionaire Tesla founder Elon Musk revealed he has Asperger's syndrome on his recent Saturday Night Live hosting gig, many applauded his transparency and the ability to speak about a condition that's often stigmatized.

Others, while still appreciating the honesty, point out that Asperger's is outdated terminology. It is no longer viewed as a diagnosis in the Diagnostic and Statistical Manual of Mental Disorders, the "bible" used by mental health professionals to diagnose conditions. Instead, it falls under the umbrella of autism spectrum disorder (ASD). The DSM was last updated in 2013.

ASD is now defined by the American Psychiatric Association as "a complex developmental condition that involves persistent challenges in social interaction, speech and nonverbal communication, and restricted/repetitive behaviors." The association emphasizes that there is a wide range of abilities and characteristics in those who have the condition.

 Charlotte Colombo at The Independent:

Tomorrow is Global Awareness Accessibility Day: an annual awareness day dedicated to improving access and inclusion in digital spaces for everyone out there who identifies as neurodivergent or having a disability. But today, a video is going viral of a senior Twitter exec calling Elon Musk a “looney tune”, “mentally handicapped” and “special needs” on account of him being autistic.

In a lot of ways, the leaking of this clip, rife with ableist slurs, isn’t even about Musk, but about how deep-rooted ableism remains even in 2022. It doesn’t matter that Autism Awareness Day was just last month, or how many people in the public eye share their diagnoses, or the number of books, movies and documentaries released about autism.

In Musk’s case, it doesn’t even matter if you’re quite literally one of the most powerful people in the world. The fact remains that for autistic people, we will still be seen as inherently “lesser” because we are neurodivergent.

.

Greta Thunberg and Asperger Awareness

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."  Perhaps the most prominent is climate activist Rachel Thunberg.

At The Journal of Autism and Developmental Disorders, Micah Hartwell, Ashley Keener, Sara Coffey, Tessa Chesher, Trevor Torgerson & Matt Vassar have a brief report titled "Public Awareness of Asperger Syndrome Following Greta Thunberg Appearances." 

Results from our study suggest that Thunberg’s increased media attention during the climate summit and subsequently being named Time’s person of the year was strongly associated with increased public awareness for AS. More than 1.3 million searches for AS occurred in September in concordance with the UN summit, nearly double the volume from the previous month. The search trend for AS remained well above the forecasted values through the end of the year. In turn, the executive director of the Asperger/Autism Network stated the organization sees increased call volumes, specifically related to acquiring a diagnosis, when prominent figures such as Thunberg receive heightened media attention and reveal their diagnosis (Ortiz 2019). Additional evidence of increased help-seeking behavior during this period may be supported by the increased internet traffic for the Asperger/Autism Network (AANE) and Autism Speaks websites.

Trump insulted her. 

Rush Limbaugh Says Greta Thunberg Is "Not Well"

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families -- including prejudice.  Rush Limbaugh recently followed Trump's example by disparaging Greta Thunberg.

Rex Huppke at The Chicago Tribune:

“The first thing to notice about Greta Thunberg is that she's 16 years old. She claims she has Ansperger's type — Ausperger's — or autism — Asperger's — some kind of problem in that area.

“And so she is made the Person of the Year by Time magazine, which is what? A political news magazine. Greta Thunberg has been introduced into the political arena by the worldwide left, including the Democrat Party. They have made her a political figure. They do this on purpose.

“So she’s out tweeting and politicizing, and she is free to lie and say whatever she wants to say about climate change and who’s responsible for it. And nobody is permitted to question her, you see, because she has — what did they call it? She is in the autism spectrum, so you can’t disagree, you can’t question, because she’s not well.”

She’s not well. That’s what set me off. While you can pick and choose the offensive aspects of those comments, the casual remark that Thunberg is “not well” highlights Limbaugh’s reckless disregard for anyone who isn’t just like him.

Greta Thunberg Wins Honor, Trump Insults Her

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."  Perhaps the most prominent is climate activist Rachel Thunberg:

Rachel DeSantis at People:

The Swedish 16 year old — who was named TIME‘s Person of the Year on Wednesday, making her the youngest person to ever be given the honor — hasn’t shied away from flipping the script on her Asperger’s, at one point referring to it not as an obstacle but as her “superpower.”

“Being different is a good thing,” she told PEOPLE in October. “It’s something we should aspire to be.”

The pride with which she embraces her diagnosis has not been lost on others with Asperger’s, who now view Thunberg as a role model. Case in point: the trending Twitter hashtag “Autistics for Greta.”

“She is my SHERO!” user @hmcooperauthor wrote in September. “Such a fearless, articulate young woman. We might be considered ‘odd, weird, quirky….’ Or whatever adjectives that you prefer to insert but I’m convinced folks on the Autism Spectrum have superpowers that you all just don’t…”

User @ThruThePrismArt agreed, writing, “I’m on the spectrum. Anyone who underestimates Greta has NO IDEA how powerful the autistic brain is when set to a specific goal. The strength of being #ActuallyAutistic is LIMITLESS.”

...
Those strengths have served Thunberg well, as she explained on CBS This Morning that her Asperger’s actually helps her in seeing the world through a different lens.

“In some circumstances it can definitely be an advantage to have some kind of neurotypical diagnosis, to be neurodiverse, because that makes you different, that makes you think differently,” she said. “And especially in such a big crisis like this, when we need to think outside the box. We need to think outside our current system, we need people who think outside the box and who aren’t like everyone else.”

Trump insults her:

So ridiculous. Greta must work on her Anger Management problem, then go to a good old fashioned movie with a friend! Chill Greta, Chill! https://t.co/M8ZtS8okzE

— Donald J. Trump (@realDonaldTrump) December 12, 2019

The Neurodiversity Challenge

In The Politics of Autism, I discuss the neurodiversity movement. 

At The New York Daily News, Rob Hahn writes about his son's college application experience:

In emails I exchanged with the university’s associate vice president of undergraduate enrollment, I addressed, among other things, whether my son’s Asperger’s was adequately considered in the admissions process. Bobby wrote about the condition in an application essay, and his high school counselor also addressed some of the challenges.

The responses I received, one of which focused critically on how Bobby’s GPA compared to other applicants, indicated ignorance or simply apathy when it comes to matters related to autism and other forms of neurodiversity.

Bobby’s experience and my email exchange with the university official led me to create “The Neurodiversity Challenge.” Through this initiative, I communicate with and strongly encourage institutions of higher education and corporations to do a better job in three areas: one, understanding more fully the value of neurodiversity; two, actively recruiting, admitting and hiring more neurodivergent individuals; and three, celebrating neurodiversity by publicly highlighting how these individuals contribute uniquely to the overall diversity of a school or business.

Attacks on Greta Thunberg

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists"

But entering the public arena also means unfair criticism.

Lydia Wilkins at The Independent:

Like young people the world over, I was delighted to hear that Greta Thunberg, the youth climate activist, has set sail for New York on a zero-carbon boat. The 16-year-old is making her way across the Atlantic with plans to travel through the US, Canada and Mexico, culminating in an appearance at the annual UN climate changeconference in Chile in December.

And though I was shocked at the extent of the vitriol levelled at her as she started her voyage, I was not surprised to see her under attack.

From journalist Sarah Vine, who questioned whether Thunberg’s GQ cover appearance was “a bit….. weird?”, to multi-millionaire Aaron Banksmaking comments about "freak yachting accidents”, some of the responses to her latest campaigning are simply cruel.

Many have pointed out that she's facing a disproportionate amount of abuse because she's a young woman. That may be part of it, but there's a bigger issue – the fact that she is honest and open about her diagnosis of Asperger syndrome.

Scott Waldman at Scientific American:

But the success of Thunberg — who describes herself on Twitter as a "16 year old climate activist with Asperger" — remains a sore point for those who reject mainstream climate science and some who have helped shape or encourage the Trump's administration rollback of climate policy.

They frequently point to Thunberg's autism, claim she is used by her parents and compare her call to young people on climate change to "Hitler Youth." They have pointed to her "monotone voice" and framed her as a "millenarian weirdo" with the "look of apocalyptic dread in her eyes."

A recent opinion piece in The New York Times prompted an outcry among climate hawks and Thunberg's allies, who said the newspaper was validating these types of personal attacks on the teenage activist.

Experts say relying on ad hominem attacks has significant collateral damage in that they dissuade people with intellectual and developmental disabilities from speaking publicly. While the language of describing someone as a "puppet" or abused by adults may appear coded, it's clearly a dog whistle that signals her words should be discounted because her mind works differently, said Steve Silberman, author of "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity."

"It's classic autism bashing," he said. "They feel at liberty to do it because autism has been framed as a pathology for decades, so they feel like they don't have to hold back, than just 'other' her, turn her into a freak when she's actually making more sense than 95% of the adults who have addressed this issue for the last 30 years."

Autistic Woman Is a Contestant for Miss Florida

In The Politics of Autism, I discuss depictions of ASD in popular culture.  Autistic people continue to smash stereotypes.

Ray Sanchez at CNN:

Growing up with autism, Rachel Barcellona was told to limit her expectations.

"I was basically promised that I would never graduate any school really or have any friends," she told CNN affiliate WFLA. "Pretty much everything bad was going to happen to me because I have autism."

Later this month, Barcellona, 22, will make history as the first contestant with autism to take the stage of the Miss Florida pageant.

"I want to use my voice to inspire hope to others," Barcellona told CNN affiliate WFTS in April after being selected to speak at the United Nations for World Autism Day.
...
On the website of the Dyspraxia Foundation USA, Barcellona wrote that she has Asperger's syndrome, loves to sing opera and hopes one day to open a school for children with disabilities. She also described her struggles with epilepsy, the neurological disorder dyspraxia, and the learning disorder dyscalculia.

"The phrase, 'You don't look autistic,' I get that all the time," Barcellona told WFTS. "And I just want to say, 'What does autism look like to you?'"

Texas Lawmaker on the Spectrum

n The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists"

Lauren McGaughy reported last week at The Dallas Morning News:

A Texas lawmaker spoke publicly for the first time Thursday about his struggle with autism.

Rep. Briscoe Cain revealed he has Asperger's Syndrome during a speech on the House floor marking Autism Awareness Month. Flanked by his colleagues at the front microphone of the chamber, the Deer Park Republican said it was time for him to tell his story.

"I, along with countless others who experience these challenges brought on by Asperger's and autism, communicate and express myself in a way that's different from others. If I don't maintain eye contact with you, it's not an intentional nonverbal cue of disrespect. Body language, reading it, and appropriate use of it does not come naturally for those on the spectrum," Cain said.

...
 "Members, right now I suspect many of you are thinking to yourself, 'So that explains it.' And yes, your assumptions are correct — that's why I'm highly intelligent," Cain joked. "The media doesn't often get it right, Fox News included. But when they portray every person with Asperger's as some sort of eccentric genius, well, then, they probably got it right. ... The bottom line is if I have to go to the back mike with a point of order that might potentially derail your bill, it's probably just a big misunderstanding. So just go with it.

Changing the Name of Asperger's Syndrome

In The Politics of Autism, I write about the dangers of eugenics and euthanasia.

In A Different Key, John Donvan and Caren Zucker found that Dr. Hans Asperger worked with Nazis in Austria.  We are now learning more details. 

Edith Sheffer, author of Asperger's Children, spoke to NPR's Michel Martin:

I came to this research because my son was diagnosed with autism and Asperger's syndrome. That's one of the reasons it's so complicated because the diagnostic criteria are overlapping. And like any parent, I read what I could about the diagnosis. And the blurbs that I found in parent manuals or online or on his Wikipedia page, as you said, described him in these heroic terms. My very first file that I looked at in the archives, however, was his district Nazi Party file that was reporting on his political reliability. And there were about 20 documents, and they're commenting on his support for the regime's racial hygiene measures, for his support for sterilization policy, racial policy. There was a document written by an SS officer saying that while Asperger was in a position to expose activities that were happening, he chose not to. So really, from the very first file. And to me, it's very surprising that this history has not come out yet.
...
There are a few reasons why I think we should get rid of the name. One has to do with medical ethics. Eponymous diagnoses are granted to honor individuals who are describing a condition for the first time and to commend their work as human beings. And in my opinion, Asperger merits neither. The second reason to rename the diagnosis is that it no longer exists as an official diagnosis according to the American Psychiatric Association. In 2013, it was reclassified as autism spectrum disorder. And so today, you can't receive a diagnosis of Asperger's syndrome in the United States. It remains an official diagnosis in other countries that go by the World Health Organization's standard, but even that is being reclassified because it's seen as indistinct from other criteria for autism.

Violence and Autism

In The Politics of Autism, I write:

There is no evidence linking autism to planned violence, but in recent years, mass shootings by young men have led commentators in the mainstream media and on the Internet to suggest such a connection. After the 2007 Virginia Tech massacre, for instance, news reports said that the shooter was on the spectrum. The speculation made little sense to anyone who understood autism. Whereas autistic people have language delays and deficits, the killer had learned English as a second language — and learned it well enough to major in the subject in college. Later on, it turned out that he had an entirely different problem, a social anxiety disorder. Adam Lanza, who committed the Sandy Hook massacre in 2012, may have had an Asperger’s diagnosis, but his father emphasized that his behavior stemmed from the psychiatric illnesses that he also had. Nevertheless, the media speculated about Lanza’s place on the spectrum, which worried autism parents. One mother of an autistic child wrote: “This is the first time I'm truly afraid for him. Afraid of what may happen to my son with autism at the hands of a stranger; a stranger who has chosen to buy into the media-fueled misinformation that individuals diagnosed with an Autism Spectrum Disorder are dangerous and capable of horrendous acts of terror and violence.”

Laurie Monsebraaten at The Toronto Star:

Reports the man connected to Monday’s van rampage on Yonge St. may suffer from Asperger syndrome, have shaken advocates in Ontario’s autism community.

Asperger syndrome has been associated with autism spectrum disorder, a complex neuro-biological disorder that affects the ability to verbalize thoughts, manage anxiety, cope with changes to routine and participate in unstructured social situations. Symptoms also include repetitive behaviours and fixations.

But violent behaviour is not typically associated with the disorder, said Margaret Spoelstra executive director of Autism Ontario.

“Autism and mental health (problems) are not synonymous. Autism is a neuro-biological disorder. But it is not about violence,” she said Tuesday. “Autism is not the reason someone gets behind the wheel of a van and plows through a crowd of people.”

Alek Minassian, 25, of Richmond Hill, is alleged to have been behind the wheel of a white rental van that struck pedestrians at Yonge St. and Finch Ave. He is facing charges in the deaths of 10 people, and attempted murder charges for 13 others who were injured.

In 2009, the Richmond Hill Liberal quoted Minassian’s mother Sona in a story about the loss of Helpmate, a local social service organization that helped her son, who she said has Asperger syndrome. The story did not name the son.

More on Asperger and Nazism

In The Politics of Autism, I write about the dangers of eugenics and euthanasia.

In A Different Key, John Donvan and Caren Zucker found that Dr. Hans Asperger worked with Nazis in Austria.  We are now learning more details. 

Herwig Czech has an article at Molecular Biology titled "Hans Asperger, National Socialism, and “Race Hygiene” in Nazi-era Vienna." The abstract:

Background

Hans Asperger (1906–1980) first designated a group of children with distinct psychological characteristics as ‘autistic psychopaths’ in 1938, several years before Leo Kanner’s famous 1943 paper on autism. In 1944, Asperger published a comprehensive study on the topic (submitted to Vienna University in 1942 as his postdoctoral thesis), which would only find international acknowledgement in the 1980s. From then on, the eponym ‘Asperger’s syndrome’ increasingly gained currency in recognition of his outstanding contribution to the conceptualization of the condition. At the time, the fact that Asperger had spent pivotal years of his career in Nazi Vienna caused some controversy regarding his potential ties to National Socialism and its race hygiene policies. Documentary evidence was scarce, however, and over time a narrative of Asperger as an active opponent of National Socialism took hold. The main goal of this paper is to re-evaluate this narrative, which is based to a large extent on statements made by Asperger himself and on a small segment of his published work.

Methods

Drawing on a vast array of contemporary publications and previously unexplored archival documents (including Asperger’s personnel files and the clinical assessments he wrote on his patients), this paper offers a critical examination of Asperger’s life, politics, and career before and during the Nazi period in Austria.

Results

Asperger managed to accommodate himself to the Nazi regime and was rewarded for his affirmations of loyalty with career opportunities. He joined several organizations affiliated with the NSDAP (although not the Nazi party itself), publicly legitimized race hygiene policies including forced sterilizations and, on several occasions, actively cooperated with the child ‘euthanasia’ program. The language he employed to diagnose his patients was often remarkably harsh (even in comparison with assessments written by the staff at Vienna’s notorious Spiegelgrund ‘euthanasia’ institution), belying the notion that he tried to protect the children under his care by embellishing their diagnoses.

Conclusion

The narrative of Asperger as a principled opponent of National Socialism and a courageous defender of his patients against Nazi ‘euthanasia’ and other race hygiene measures does not hold up in the face of the historical evidence. What emerges is a much more problematic role played by this pioneer of autism research. Future use of the eponym should reflect the troubling context of its origins in Nazi-era Vienna.