"Real" Autism

Read Sarah Kurchak on "real" autism. 

Where I saw the first irrefutable proof of myself, though, so many others saw a referendum.

“But you’re not really autistic,” an acquaintance posited a few weeks later, when I was still testing out how and if to introduce this new explanation for everything into casual conversation. “You can have conversations. You’re out at a bar. I have a friend who’s autistic. Like, real autistic. You can tell. And he could never do this.” He took my wandering eyes and distracted response as signs of concession, not as a testament to my at least somewhat obvious autism, and moved on. I soon got used to this type of exchange. I’m still hoping that I’ll eventually get better at handling it.

Ari Ne'eman - ABA and Behavior Suppression

UPDATE: This article is from 2014. It was circulating through my feeds and I didn't notice the publication date. Still useful stuff from Ari. Happy Friday!

The New York Times has a long feature on "the kids who beat autism." It is the article you expect it to be. They do talk to Ari Ne'eman, though, in order to portray it as balanced. Here's what Ari says:

Ne’eman and others strongly support treatments that improve communication and help people develop cognitive, social and independent-living skills. But they deeply resent the focus on erasing autism altogether. Why is no longer being autistic more of an optimal outcome than being an autistic person who lives independently, has friends and a job and is a contributing member of society? Why would someone’s hand-flapping or lack of eye contact be more important in the algorithm of optimal than the fact that they can program a computer, solve vexing math questions or compose arresting music? What proof is there that those who lose the diagnosis are any more successful or happy than those who remain autistic? 

“We don’t think it is possible to fundamentally rewire our brains to change the way we think and interact with the world,” Ne’eman says. “But even if such a thing were possible, we don’t think it would be ethical.” He and others argue that autism is akin to homosexuality or left-handedness: a difference but not a deficiency or something pathological. It’s a view that was memorably articulated in 1993 when a man named Jim Sinclair wrote an open letter to parents of autistic children, igniting what would come to be known as the neurodiversity movement. Autism, Sinclair wrote, “colors every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person — and if it were possible, the person you’d have left would not be the same person you started with. . . . Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (nonautistic) child instead.’ . . . This is what we hear when you pray for a cure.” 

Ne’eman says society’s effort to squelch autism parallels its historical effort to suppress homosexuality — and is equally detrimental. He points out that in the 1960s and ‘70s, Lovaas’s team used A.B.A. on boys with “deviant sex-role behaviors,” including a 4-year-old boy whom Lovaas called Kraig, with a “swishy” gait and an aversion to “masculine activities.” Lovaas rewarded “masculine” behavior and punished “feminine” behavior. He considered the treatment a success when the boy looked “indistinguishable” from his peers. Years later, Kraig came out as gay, and at 38 he committed suicide; his family blamed the treatment. 

Neurodiversity activists are troubled by the aspects of behavioral therapy that they think are designed less for the well-being of autistic people and more for the comfort of others. Autistic children are often rewarded for using “quiet hands” instead of flapping, in part so that they will not seem odd, a priority that activists find offensive. Ne’eman offered another example: “Eye contact is an anxiety-inducing experience for us, so suppressing our natural inclination not to look someone in the eye takes energy that might otherwise go toward thinking more critically about what that person may be trying to communicate. We have a saying that’s pretty common among autistic young people: ‘I can either look like I’m paying attention or I can actually pay attention.’ Unfortunately, a lot of people tell us that looking like you’re paying attention is more important than actually paying attention.” 

Indeed, Ne’eman argues that just as gay people “cured” of homosexuality are simply hiding their real self, people deemed no longer autistic have simply become quite good at passing, an illusion that comes at a psychic cost. Autism activists point out, for example, that one-fifth of the optimal-outcome participants in Fein’s study showed signs of “inhibition, anxiety, depression, inattention and impulsivity, embarrassment or hostility.”

And that's all I recommend you read of the article. YMMV.

Pacific Standard: Why American Keeps Criminalizing Disabled Children of Color

I have a longform piece for Pacific Standard today. I've been working on it for about 6 weeks. Please read and share throughout your networks, if you are so inclined. TWs for abuse of children by authorities.

"Why would a school cop in Florida throw a slender, autistic fourth-grade student to the ground? You might assume that the child must have presented some kind of serious threat to himself or others, that other skilled experts had already tried de-escalating interventions, and that there was no other choice. Such was not the case for 10-year-old Seraph Jones. This spring, a school cop threw him down and held him against the ground with sufficient force to cause rug burn.

It turns out that Seraph's worst day at school—so far—happened because he was clicking a key too loudly, then ended up trapped in a situation where he had no good way to safely calm down."

Do Not Politicize Barron Trump

In late summer, someone I respect told me that rumors were circulating around Barron Trump being autistic, based on his behavior on camera at the RNC. I looked at the rumors, found them believable but not confirmable, and felt it would be unethical to report on them in any way.  Still, I knew that if Trump won, the rumors would eventually go mainstream, find an outlet or a celebrity to promote them, and then I'd need to respond.

 Yesterday, Rosie O'Donnell (whose history speaking on autism isn't good) tweeted the following, the video has half a million views, so:

Barron Trump Autistic? if so - what an amazing opportunity to bring attention to the AUTISM epidemic https://t.co/Acgy1Qxyqi via @YouTube

— Rosie (@Rosie) November 22, 2016

My simple take is this - Do not politicize Barron Trump. Do not try to out people - anyone in any context - as disabled. Do not be ableist or spread stigma to serve political agendas.

A few more thoughts:

• You do not know whether Barron Trump is or isn't autistic. 

The video is not especially convincing, just pictures of a ten-year-old boy who is sometimes restless and rarely smiles when on camera in front of millions of people. He could be autistic, because autism is a common natural variation in the human neurotype, but he could also not be. Stop speculating.

• It is both unethical and cruel to speculate about a child's disability.

In fact, it's best not to speculate about anyone's disability, as such speculations inevitably reveal more about stigma than about the individual. 

• Barron Trump is not a public figure

Yes, horrible right-wing media outlets politicized both Sasha/Malia and Chelsea Clinton. Those people were horrible. Don't be like them.

• I have written about Donald Trump's views on vaccines. They are deeply troubling.

There's an assumption that Trump's antivax ideas come from his own experience. He's said:

You take this little beautiful baby, and you pump—I mean, it looks just like it's meant for a horse, not for a child, and we've had so many instances, people that work for me...

Just the other day, 2 years old, 2½ years old, a child, a beautiful child went to have the vaccine, and came back, and a week later got a tremendous fever, got very, very sick, now is autistic

Reminder: There is no autism epidemic. We diagnose differently now. Vaccines do not cause autism. 

[This paragraph was edited for clarity] Really, though, it doesn't matter who Trump was talking about. If his own son or not, the point is that vaccines do not cause autism. 

• I am going to fight against antivaxxers in the CDC, in HHS, as the Surgeon General, in the FDA. Barron Trump is not a pawn in that fight.

Someday, I hope we have more openly actually autistic public figures, including presidents and other elected officials. I hope we have children who live in a world where talking about their neurodiversity is no more controversial than describing their hair color. We do not live in that world. 

My experience over the last year has shown me how quickly the Left is willing to go ableist. Let's try to do better on this one.

Dr. Jill Stein - "I'm not aware" of evidence linking vaccines and autism

I will be writing more fully on this elsewhere, but here's a storify of Dr. Jill Stein's tweets about autism and vaccines. I was initially very pleased, but have been convinced that "I'm not aware" is still trying to walk the lines between anti-science conspiracy mongers and the rest of the electorate. Worse, Stein allegedly posted "there is no evidence ..." first, before deleting and changing to the more hedging tweet.

Either see the tweets below or (recommended) click over to Storify, where the interface is better.

Autism, Academia, and Why Media Representation Matters

Earlier in the week, Scott Weingart had a brave, essay on being autistic in academic, published in Inside Higher Education.

Admitting mental illness or neurodevelopmental disorder is dangerous, unless you're a middle-class white man diagnosed on the autism spectrum. If you're black and/or a woman, or if you have depression or anxiety, you may be deemed too unstable to work in a modern business or too dangerous to trust as a neighbor. But if you're well-adjusted white dude who scores low on the autism severity spectrum? Have a job at Google!

It's from this acknowledged position of privilege that I choose to come out, under my own name and from a non-tenure-track staff position at a major research university. According to several independent professional diagnoses over the course of my life, I am both autistic and ADHD. (Whether either or both of these actually constitute a “disorder” I leave to the reader.)

It is terrifying to admit this.

I want to highlight one paragraph in particular, under the theme - representation matters. I frequently post about the importance I place in media. Here's Weingart:

My decision to write this essay was precipitated by the CBS TV show Elementary. The show currently features a budding romance between two autism-spectrum characters, and watching it now makes me realize how much I wish I had seen it growing up. Things that have never made much sense might have been easier for me to understand. Maybe if I had seen more familiar faces going through similar difficulties, I would have sought help sooner.
So here I am, presenting my face to the world: I am an autistic academic.

Looking forward to following his work.

Two Deaths and the Cult of Compliance

Two deaths of disabled men at the hands of law enforcement have been in the news lately.

One was black, a veteran, and a mental health crisis spun him into custody, where an officer (allegedly) broke his neck. The other was white, nonverbal, autistic, and walked away from his group at a park, where an officer (allegedly) slammed him to the ground and caused his death.

Here are the stories.

Elliot Williams died in 2011, but a new lawsuit and released surveillance video have made it news.

Elliott Williams spent the last five days of his life in a Tulsa County jail, paralyzed and lying on the cold concrete floor. But despite the 37-year-old Oklahoma man’s pleas for help, guards did nothing to save him, a lawsuit claims.

At one point, jailers dumped Williams’s limp body into a shower and left him there for an hour. The dying inmate “would not stand up but we did give him a shower anyway,” a captain later testified, according to a sheriff’s office internal report.

Another officer saw Williams face down in the shower, screaming, “Help me!” according to the internal report.

“He’s acting like he’s paralyzed, but we know he’s not,” a mental health worker told Williams’s dad, court papers allege.

Detention officers, nurses, and even a jail psychiatrist accused Williams of “faking” an illness. His family says they declined to administer medical care or transport Williams to a hospital—until it was too late.

Williams died in a pool of his own saliva and vomit. Notice that although he had psychiatric disabilities, what killed him was an officer deciding that a threatening step required slamming him to the ground, during which he suffered the neck injury.

Meanwhile, just Wednesday, Paul Gianelos walked away from his group at a park, so his caregivers called the police to help find him. For reasons that aren't clear, when Gianelos wouldn't quickly comply with orders to get in the car, the officers - at least one of whom had Crisis Intervention Team training - decided to escalate the situation (instead of, for example, calling for help from the professionals who cared for Gianelos). From WUSA9 in DC:

Fairfax police say a 20-year veteran officer with crisis intervention training, spotted
Gianelos along Annandale Road, about a mile from the park. Police say the officer tried to talk him into coming back to the group home outing. Gianelos apparently refused, and police say he became combative and began to struggle with the officer. Gianelos was handcuffed, and fell, hitting his head. Rescue crews were called and police say when Gianelos was being transported, he went into cardiac arrest and died.

We don't have more details yet, but I've read a lot of these reports, and I suspect we'll find out that the officer simply decided that compliance, rather than patience, was mandatory.

For new readers, here's some information on the cult of compliance and law enforcement.

• Original post.
• Label/tag search on the site.
• Ferguson and the Cult of Compliance (Al Jazeera America, 8/15/2014)
• The Outrage of Handcuffing Children in Schools (CNN.com, 8/5/15)
• The Corrosive Cult of Compliance in Our Schools (Al Jazeera America, 4/22/15)

 And many more. 

#CripTheVote - Voting and Autism

It's voting day in Illinois. Today I'm going to vote in my first consequential presidential primary of my life. In all other primaries since 1992, the decision had been pretty much made by the time the primary got to me (except in 2008. IL was consequential, but Obama was obviously going to win his home state, so ...).

I'm most excited about voting for Kim Foxx for Cook County States Attorney, hoping to throw out Anita Alvarez, who has not held bad cops accountable for their actions. 

Here's a piece from the Washington Post on a woman helping her autistic son register to vote. It mentions the hashtag #CripTheVote, which is nice to see. Twitter activism has real impact!

Recently, however, I noticed the Twitter hashtag #CripTheVote, which is a rallying call to political candidates to take note of this huge constituency. As a disability rights advocate, I retweeted dutifully. The shadow of sadness for Nat never quite cleared, though, and one day I found myself angry about it: Why couldn’t Nat vote? Who was to say that he couldn’t make such decisions for himself?

Jessica Wright's "Missing Generation of Autistics"

As I (and many people smarter than me) frequently say - there is no autism epidemic. Rates are increasing largely, perhaps solely, due to changing how we diagnose autism.

Now Jessica Wright, for Spectrum (and republished by The Atlantic), has written an enormously important piece on the "missing generation" of autistic individuals.

Last year, Scott Hartman moved into his own apartment for the first time. He quickly learned to balance his budget, squirreling away money to buy a Blu-ray player or Xbox games. He started taking long walks to his favorite fast food joints: Hardee’s, Papa John’s, Chick-fil-A, Taco Bell. To get to the science museum or the library, his other favorite destinations, he is learning the intricacies of public transportation.
Scott can enjoy these simple pleasures because two years ago he was finally diagnosed with autism. He was 55.
For decades, Scott had struggled to find his place in the world. Misdiagnosed with schizoaffective disorder and manic depression (now called bipolar disorder), he spent much of his life in and out of group homes and psychiatric institutions, often heavily medicated: At one point, he was taking 18 pills a day.

Wright talks to a number of researchers who have been working to locate people like Hartman. Many were diagnosed with schizoaffective disorder or bipolar disorder and given medication designed to treat such conditions. Because they had neither, the medicine didn't help.

The article is tragic. So many lives spent in isolation, medicated or otherwise, due to our lack of understanding about autism, our lack of tolerance for neurodiversity. It's also a vital piece of evidence to push back at the epidemic language.

There is no autism epidemic. We're just getting better at understanding it.

Autism Rates now 1 in 45 - Still no Autism Epidemic

Quick post today as I am in transit. Anti-vaxxers and pro-cure folks in the Autism community are making much of the claim that Autism rates are now 1 in 45. 

As always - there is no autism epidemic.

The great Emily Willingham has more:

For the 2011-2013 survey, parents answered a series of three questions. The first asked if their child had intellectual disability. The second asked if their child had any developmental delay. And the third question listed several conditions, from Down syndrome to sickle cell anemia to autism spectrum disorder (ASD), and parents were asked if their child had been diagnosed with any of them.
But 2014 brought some tweaks, and those tweaks made a difference. The intellectual disability question came first again. But the second question directly asked parents if their child had an ASD diagnosis. The third question then asked about any other developmental delay. More than 10,000 parents are interviewed in each year of this survey.
The simple change to emphasize the autism question resulted in the near doubling of prevalence from 2011–2013 to 2014. Underscoring that this increase reflects a shift in how parents responded to the questions, the prevalence of ‘other developmental disorders’ dropped in that same time period from 4.84% in 2011-2013 to 3.57% in 2014. Intellectual disability prevalence remained pretty much the same in the two periods, and the collective prevalence for all three conditions (intellectual disability, ASD, and other developmental disorders) also remained stable.
What a difference a question can make. But that might not have been the sole influence on the results.

Three lessons.

1) Autism and neurodiversity are natural parts of the human condition.
2) The high rate has to do with changing diagnostic questions.
3) Always read Emily Willingham.

 

 

Steve Silberman wins everything! (Or, how paradigms change).

Steve Silberman, author of Neurotribes, has won the Samuel Johnson prize for non-fiction, a prestigious U.K. award. It's the latest of many prizes, glowing reviews, and appearances high on best-seller lists for this magnificent work on the history and meaning of autism. It directly challenges all the pity and tragedy narratives, without erasing lived experiences of difficulty by autistic people or family members. It's deeply rooted in the social model of disability, emphasizing the ways in which people become disabled by a society geared only towards the typical. It's widespread readership and visibility has the potential to shake how people only casually linked to the disability world perceive autism, perhaps shifting the flow of dollars and celebrity support away from "cures" to acceptance and accommodation.

I read the book this summer and had planned to review it, but instead got caught up in the Autism Speaks tangle, and interviewed Silberman for this piece, and by the time my writing log had cleared, the book was well launched. It's an amazing piece of research and writing, not the least because Silberman negotiates a challenge that I face as well: He's not autistic.

Neurotribes is a masterful work of allyship. Silberman is thoughtful and intentional in terms of how he represents autistic people, and I know he holds himself accountable to the group he's trying to represent. Autism Speaks is worried, and while I've heard plenty of grumbling that the mega-charity only cares because a famous neurotypical author has weighed in, none of that grumbling has been directed at Silberman (to my knowledge. I'm sure there are exceptions. There are always exceptions).

A book like this can have enormous impact on a paradigm. It has to come at the right moment, when society is ready for its message. It has to build on years and years of work by people inside the movement. This is a problem. It shouldn't take an elite voice like this to get people to listen, but when you're competing with Autism Speaks and their 60 million dollar a year budget, it's hard to get a counter-message through. Neurotribes is, at least in some circles, providing a hefty counter-weight to the tragedy/epidemic narrative of autism.

Sesame Street and #BoycottAutismSpeaks

In April 2014, Sesame Street announced a partnership with Autism Speaks. Autistic indivduals and their allies quickly organized to push Sesame Street to do better, and not listen solely to a group dedicated to perpetuating the worst stereotypes about autism.

The results are pretty good. From an LA Times article on the process:

Children with autism vary in their traits significantly: some can talk, while others can’t. Many of them are sensitive to noise. Some have trouble keeping eye contact, and many of them experience the world differently, so they’ll touch different objects to explore the sensation of texture. Perhaps because of this range, autism is also extremely controversial. While some organizations, such as Autism Speaks, consider autism a syndrome that calls for research to help mitigate its effects, others, such as the Autism Self-Advocacy Network, simply view autism as an alternative way of expressing oneself.
So by stepping into the fray, and by choosing the traits for one character to represent autism, Sesame Street risked facing backlash.

“Sesame can be a great convener of different interests,” Westin said. “We were able to bring people at opposite ends of the spectrum, pun intended, from Autism Speaks, to the Autism Self-Advocacy Network. Those groups see certain things differently, but what they had in common is they wanted to give families and children tools.” Both groups have released statements supporting the initiative...

Ultimately, after working with these groups and experts from such institutions as the Yale Child Study Center, they decided on these characteristics for Julia: She can talk. She cannot make extensive eye contact. And she flaps her arms when she gets excited. “We chose things we thought would be most helpful and most typical,” Westin said. On top of these markers of autism, Julia is very curious and smart.

 It's good to see that Sesame Street was willing to listen to actually autistic people and create a positive, realistic, autistic muppet.

Autism Speaks - Is Unity Possible?

I have a new piece up at Al Jazeera America this morning on Autism Speaks.

Autism Speaks is the mega-charity of the autism world. Founded in 2005, it has an annual budget of $60 million, is known for its ubiquitous awareness walks and has a handsome array of celebrity backers. In some quarters of the disability rights movement, however, it has long been reviled for silencing and shaming autistic people.

The organization is criticized for the lack of autistic people on its board of directors and among its senior leadership. Its advertising materials also present autism in the worst possible light. One video portrays autism as a terrifying stalker, saying, “I am autism … I know where you live.” Critics claim it spends hardly any money onactually helping autistic people and that it supports abusive therapies. Worst, its mission calls for a possible cure for autism, which for many autistic people is tantamount to a call for genocide.

Autism Speaks disputes all these characterizations, but well defended by its giant piles of money, the mega-charity is usually able to ignore its critics. However, when best-selling author Steve Silberman recently published a high-profile op-ed in the Los Angeles Times criticizing the group, Autism Speaks responded with a call for unity. Could its willingness to engage suggest that it is on its way to becoming a less divisive member of the disability rights movement?

Let's be clear - I am deeply skeptical. In writing this piece, I went to a number of autistic people for comment and quote them in the piece, all of them focusing on similar issues: Center autistic people in senior-leadership, get past this tragedy language, and, as Lydia Brown said, don't just listen to straight white upper class autistics.

That's really what I thought I'd write about. I also got a comment from Shannon Des Roches Rosa, the parent of an autistic teen and senior editor at Thinking Person's Guide to Autism, in order to show that parents' groups can in fact work beautifully with groups run by and for autistic individuals. Because being a parent is complicated and we DO NEED organizations by and for us too, we just can't let those organizations lose sight of bigger issues. Shannon told me:

The Autistic Self-Advocacy Network and other autistic-led orgs are very clear on such community-wide matters: "Nothing About Us Without Us." I don't think there can be unity until AS incorporates autistic leadership, and changes their mission and funding to prioritize autistic-led goals. There's no halfway on anything, for me, until that happens. What I think many people don't understand -- because of AS's dismissal of autisticadvocates as "not like our children" -- is that autistic advocacy incorporates disability understanding and accommodations, and does a better job of prioritizing the needs of autistic people of all ages and their families than AS is doing now. If we got AS's funding and marketing power behind the messages and services autistic people actually need, I think that would naturally create more unity.

You might note that this quote isn't in the piece, and that's because journalism happened. I did my due diligence. I called for comment. And then I followed up when, surprisingly, I got one.

The last time I went to Autism Speaks for a comment, I got a call promising one, and then nothing. I wrote this for the New York Times, and then a certain amount of drama broke through. Autism Speaks contacted my editor, denouncing me, claiming they had left me a voice mail, and demanding their own column. I still don't know if they called the wrong number, if spokesperson A was lying to his boss, VP B to cover himself for not getting back to me, or if VP B was also lying. I'd like to believe in human error (wrong number) than lies, but since Spokesperson A had successfully called before and had my email, I'm not sure.

Mostly, Autism Speaks has a reputation for ignoring critics. As I said in the paragraphs above - with their bankroll, they can afford to ignore us peons. When autistic people criticize them, they say that such high-functioning people are "not like 'our' children," and then use that as another opportunity to demonize autism as stalker.

But still, I reached out to Autism Speaks, and I got an official comment. It said, among other things, that lots of autistic people work for AS. I asked to speak with one, and got put in touch with Kerry Magro.

Magro is a motivational speaker, author and the social media coordinator for Autism Speaks. He has autism. He got involved with Autism Speaks through awareness walks in college, received an internship from them and eventually accepted a fulltime job offer. He would be delighted to see a person with autism on the board, but is unstinting with his praise. “Everything I've seen with Autism Speaks,” he said, “is a lot of embracing individuals with autism.”

Then I asked Magro about whether he needed to be cured. His response revealed a pathway forward:

For a long time, when I was a kid, when I was having speech difficulties, when I was having trouble making friends, when I was having a lot of communication delays, I always wanted supports to help me progress. Autism Speaks’ mission is to help in the lives of people who have autism. Cure — in the way I’ve always seen it — is just being able to give supports to people [so that they] can live the best lives possible whether it be physical, occupational, speech therapy, etc. I hope that we are able to put supports in place to help our kids progress.

Notice how Magro isn’t arguing against Autism Speaks’ mission, but he also isn’t using the language of epidemic. If Autism Speaks isn’t going to listen to its critics, maybe it could learn to listen to its own employees.

Will it happen? I can't say. But Liz Feld is stepping down as president of Autism Speaks, so there's a moment here for change. It won't be radical change. It won't turn AS into the organization that I wish they were. But it's possible.

And here's my closer.

Every movement has its center and its peripheries. It should come as no surprise that the most privileged elements — white, monied, neurotypical — dominate the center of the autism advocacy movement, or that such do-gooders find it difficult to accept as valid any criticism of their efforts. 

As a white, relatively monied (in that I have a nice house and a reliable income), neurotypical man ... I think about this all the time, trying to be a useful member on the periphery.

Call for Stories: Neighbors Trying to Control Your Disabled Child

Yesterday I published a brief post on Flowers v. Gopal, in which some rich California folks are trying to declare a neighboring autistic child a public nuisance. I'll have more to say about the case, including answering the, "but but he wasn't a nice kid!" comments I'm getting (short version: If he didn't have autism and they wanted to sue, they'd use personal injury law or something, not public nuisance. Public nuisance law presupposed it's uncontrollable. Anyway).

I'd like to collect other stories about the ways that neighbors have tried to control your disabled child through the legal system - either lawsuits, calling the police, or calling child protective services or departments of children and family services (or whatever your state has), or trying to get the school to expel your child because of their behavior to other children, etc. 

You can post them in comments (now with Disqus, which hopefully will work better). You can post them on my Facebook threads. You can send them to me over email. If you send them to me over email, I can keep them confidential.

Please share widely.

Autism Speaks and the No True Scotsman Fallacy

I wrote about Autism Speaks a few weeks ago, and my email box has been lively with parents telling me to "check my facts" or sorrowfully wanting correct my ""unsound and terribly flawed" information.

One of the issues with Autism Speaks is that they define Autism as tragedy. Then, when confronted by autistics who are clearly not tragic, they respond, "Well your autism is not like our autism," or "you are not like our children."

Here's an insight, I think. The definition of autism employed by Autism Speaks and its defenders depends on the "No True Scotsman Fallacy." From Wikipedia -

No true Scotsman is an informal fallacy, an ad hoc attempt to retain an unreasoned assertion.[1] When faced with a counterexample to a universal claim ("no Scotsman would do such a thing"), rather than denying the counterexample or rejecting the original claim, this fallacy modifies the subject of the assertion to exclude the specific case or others like it by rhetoric, without reference to any specific objective rule ("no true Scotsman would do such a thing").[2]

Person A: "No Scotsman puts sugar on his porridge."
Person B: "But my uncle Angus likes sugar with his porridge."
Person A: "Ah yes, but no true Scotsman puts sugar on his porridge."

That's how Autism Speaks deals with autistic people.

AS says: - People with autism can't ...
Autistic person says: I can!
AS says: No true person with autism can ...

It allows them to dismiss autistic critics as not relevant or not the people they are working to "save."

There are, of course, parents who are struggling, but lots of parent groups recognize that the diversity of the autistic spectrum is a strength, a way to build a movement, rather than a threat to fundraising based on sorrow.

Neurodiversity, Colonialism, and the Cult of Compliance

Neurodiversity is a powerful concept, taking the ideas of intellectual and psychiatric disability and wrestling them into the diversity narratives. In the diversity narratives, we don't try to cure or fix, but to accept, understand, accommodate, assist, and hopefully eventually move to a place where we recognize same-ness in our differences. Bringing disability into the diversity conversation is good for disability rights movement, but it's better for the diversity movement, as disability is a universal aspect of the human condition. As my friend K. says - disability isn't a niche group; it's us.

Which brings me to this essay by Sean Donohue on neurodiversity (and pagan thought).

My senses take in torrents of information that sometimes overwhelm my capacity to process them, making me miss things that would seem obvious to most, but at other times (and sometimes simultaneously) make me aware of subtle presences in the world that elude others’ attention. My brain process processes information in non-linear ways that make it easy for me to perceive patterns and connections in the world but difficult to complete a step-by-step process like paying the electrical bill. I have a complex relationship with language — sometimes loquacious and poetic, other times completely non-verbal. When I speak in metaphor, people tend to take me literally, and when I speak literally people often assume that I am speaking metaphorically, because my baseline assumptions about the world differ from those of the vast majority of people around me, and they always have.

What this essay then does is explore the ways that colonialism attacks neurodiversity, what's threatening about autistic thought to the colonial mindset, and how to work against it. I think the writing is excellent and it's a very different approach to what I've been calling the cult of compliance.

Compliance is an important word in autistic discourse, because of a huge, and controversial, therapeutic emphasis on compliance training (finding ways to force autistic people into certain kinds of typical behavior). More on that another day. For now, it's focus on colonialism (I think you could write similarly about neoliberalism).

It follows that the remaking of the world requires a remaking of language — something the colonizers understood. Capitalism depends on commodification, the process of turning parts of the world into objects which can be traded in the marketplace. But you can’t commodify a forest or a mountain if people call it by a name which recognizes it as alive. Patriarchy depends on the enforcement of gender roles. But you can’t enforce patriarchal gender roles within a culture that has no words that denote gender, such as the Tlingit, unless you rob people of their language.
So the process of colonization requires either a process of forced conversion and inculturation — the liberal alternative — or a process of eradication. In both Ireland and North America, British capitalism, engaged in both. But forced inculturation was more cost efficient than mass slaughter and also left the colonizers with a labor force to extract value from stolen land.

 Worth reading, I think.

Autism Speaks Critiques - Resources and a Plea for Neurodiversity

UPDATE: My NYT piece has been delayed. Still in the works but probably 10 days or so from now, for various reasons. Stay tuned!

Today I am going to have a piece in the New York Times about Autism Speaks and a recent parenting dilemma. I thought it might be useful to have some resources here. I'll post the link to the piece when it's up.

• Here's the master post of resources on Autism Speaks from "The Caffeinated Autistic." It's the best places to start.
• Here's a letter to Autism Speaks signed by many disability rights organizations, and written by Ari Ne'eman, president of the Autistic Self Advocacy Network. ASAN is my go-to place for information on autism. 
• My posts: Say no to Blue-Washing and Disability is not War are both directly about Autism Speaks. I also reference them in my piece on London McCabe's murder. 

From the letter:

We, the undersigned organizations representing the disability community, are writing to urge you to end your support for Autism Speaks. We profoundly appreciate your interest in supporting the autism and broader disability communities. Our work is about empowering and supporting people with all disabilities, including adults and children on the autism spectrum, to be recognized as equal citizens in our society and afforded all of the rights and opportunities that implies. Unfortunately, Autism Speaks’ statements and actions do damage to that work and to the lives of autistic people and those with other disabilities. It is our hope that we may work together in a spirit of partnership to find new and less controversial ways for you to show your commitment to our community.

There's lots more, but if you start on the master post, you'll find your way through the critiques. They do not speak for autistic people. They do not speak for many parents. I do not believe they do more harm than good.

One response to the Autism Speaks problem is to emphasize the concept of neurodiversity. Neurodiversity asks us to reframe our understanding of the many ways that peoples' minds work. Instead of thinking about disabled and normal, consider diversity. 

It so happens there's a new project, NOS Magazine, that has just launched a kickstarter. NOS = not otherwise specified, for conditions that don't quite fit into clear diagnostic categories. This kind of journalism and representation is exactly what the disability community needs, and I'm asking you to support them if you can.

Thanks!

There is No Autism Epidemic

How we talk about disability matters. For example, I have often criticized Autism Speaks and anti-vax groups (not the same - AS is not AntiVax, they have other problems) for the way they talk about autism as a disease needing a cure. I assure you, my autistic friends are not diseased. Moreover, it's absolutely clear that autism rates - in terms of numbers of diagnoses - are skyrocketing. The question is why. Antivax folks say it's because of vaccinations (N.B. It's not). Autism Speaks says, I believe, that they don't know why the "epidemic" is happening and they need to study it and stop it.

Meanwhile, the counter-argument is that there is no autism epidemic, we are just diagnosing it more accurately and have expanded the definitions.

Here's a new large-scale study from Sweden. It took ten years and nearly 20,000 twins (190 with autism) and all children in Sweden (over a million, 4000 with autism) and concluded this:

The prevalence of the autism symptom phenotype has remained stable in children in Sweden while the official prevalence for registered, clinically diagnosed, autism spectrum disorder has increased substantially. This suggests that administrative changes, affecting the registered prevalence, rather than secular factors affecting the pathogenesis, are important for the increase in reported prevalence of autism spectrum disorder.

We are diagnosis autism differently as our understanding of the neurological condition has developed. Many, many, more people are being diagnosed as on the spectrum, and this is a good thing, as it enables neurotypical society to become more accepting and more inclusive of a wider range of behaviors. For autistic people who benefit from various kinds of therapies, and some certainly do (this is a controversial issue I'll save for another post), a diagnosis enables a therapist to work with them correctly.

So let me say it again:

1) More accurate diagnosis of autism is a good thing.
2) There is no autism epidemic

How Not to Report on Violence against Disabled Children

In Spokane, a woman stabbed her autistic son in the neck. Here is 100% of the information on the victim (link here):

Court documents say the 17-year-old son had several cut marks on his neck and throat, but officials say his wounds were not life threatening.

The rest of the piece is about how hard life must have been on the mother, building sympathy for her. It perpetuates the idea that autism is so terrible that it must be cured, eradicated, vanished. That violence against autistic people is reasonable. That (to cross news stories for a minute), it's better not to get vaccinated than to risk autism (NOTE: Vaccines do not cause autism. END NOTE). This kind of little news piece is part of the problem.

I wrote about this after the death of London McCabe.

London had autism. Media coverage of his death has widely focused on the stresses and challenges of raising a child with autism. In other words, the stories are about his mother and her problems finding help, not the dead boy.

This is a mistake. In all cases of violent crime, but especially those involving people with disabilities and their caregivers, we need to mourn the victims, rather than explain away their deaths. Unfortunately, whenever these terrible kinds of tragedies take place, which they do far too often, we do just the opposite.

Here, then, is a perfect example of what not to do.

And here's the thing, even if the mother's story is in fact tragic and filled with difficulty, even if she's struggling with all sorts of issues, even if she needed support that she didn't get, that's not the story we should be telling after an event like this. I want to tell stories about parents needing and getting more help, while advocating for policies that change lives. I tell these stories all the time, highlighting individuals and organizations, arguing for or against laws, and so forth.

But after an act of violence, we need to tell the boy's story. We tell about his life. We make sure that he's represented as a full person who didn't want to get stabbed in the neck. We must not blame the disability.

This story does exactly the opposite, going to a local parent at the Northwest Autism Center who ALSO talks about how hard her life is, not how meaningful her child's life is.

Disability community - we need to call this out, give better models to journalists, write to the NW Autism Center, and otherwise change this mode of journalism.

Definitions of Autism and Jerry Seinfeld

On CNN - in "London McCabe's Death Matters" - I argued that the way we talk about autism, our ideas about the condition, our ideas about disability more generally, shape the worldview that can lead to child murder. The correlation in these cases is not lack of services or money, but ideas about disability. Correlation is not causality and any individual case may have all kinds of factors, including serious mental conditions, but the correlation is there. And so I argue we need to write victim-centered narratives.

In this blog post, I want to think about how hardship narratives in the autistic parenting community perpetrate what I think are dangerous ideas about autism because they demand that autism = struggle. To do that, I'm going to look at responses to Jerry Seinfeld's interview in which he came out as possibly on the autistic spectrum.

Response to Seinfeld was varied. From the welcomes (but stop supporting Autism Speaks) to get out! It's these latter that interest me.

First - Here's a discussion about the removal of Aspergers Syndrome as a separate diagnosis, instead redefining Autism as a broad disorder with an expanded spectrum. That's really the subtext for a lot of these pieces.

The general dynamic is that autistic people are welcoming Seinfeld, while parents who are struggling mightily (and I do not deny the veracity of those struggles) want to exclude not only Seinfeld, but by extension anyone with autism who is doing pretty well.

Here's an example from "Age of Autism," an anti-vaccination group linked directly to the kind of "cure-based" discourse I talked about in my CNN piece. The author, a struggling parent, writes: "Screw You Jerry Seinfeld." The complaint is that because Seinfeld is so rich and successful, his embrace of the autism label somehow diminishes the struggles that the author is having.

And you can watch Jerry struggle with basic social engagement and making friends on his new show where he socially engages his many friends, who happen to be the most famous, popular and clever people in the world, on his new show, “I Can't Look You In The Eye or Answer Wh Questions Without Prompting.” No... that's not it. It's called “Comedians in Cars Getting Coffee.” A follow-up to the most famous comedy show of the late 20th century in which Jerry spent many years making witty banter that was frequently entered into the English lexicon. Not that there's anything wrong with that.

That reminds me... do you remember that hilarious episode where Jerry walked around his apartment on his tiptoes while flapping, wiped his poop on the wall, got lost for three days in Manhattan, was tortured by bullies and then had a seizure? Me neither.

Because again, Jerry apparently has the kind of autism that is not dysfunctional, even though autism by definition is dysfunctional. He has a non-impairing impairment. Because autism, it’s just a different way of being– even though, again, by definition, being listed in the Diagnostic and Statistical Manual of Mental DISORDERS means that it is a disorder... which means that it is disordering, dysfunctional and impairing.

 In the Down syndrome community, which is of course chromosomally based in terms of diagnosis so there's less wiggle room, there's a general tendency to cheer success. My child can do many things, but I know many people with Down syndrome with MUCH better speech and hence greater degrees of integration. I would never want to exclude such people from my son's community. But here, from Age of Autism, we have a voice trying to separate the successful from the struggling.

And it's not just the crank groups like Age of Autism. In Salon, Columbia University creative-writing professor Marie Myung-Ok Lee wrote essentially the same piece, only with clearer prose and less ranting.

Seinfeld said he hopes his announcement will help diminish the stigma of autism, an unequivocally laudable intention. Retroactively self-diagnosed adults or high-functioning autistics like Temple Grandin indeed may be living proof that one can overcome huge obstacles and live with and even flourish despite autism. Every day, dead people, too — Mozart, Newton, Einstein — are also retroactively diagnosed with autism.

What I fear is that these public faces of autism will allow society, and more important, policymakers, mentally off the hook. You can have autism and get a Ph.D.! It helps you write jokes! Your charming quirks and aggravating behaviors are now explainable. 

To veer to the other end of the spectrum, the sporadic — but steady — news of overwhelmed parents killing their own children warns of a crisis building in our own homes. Many of these cases have been mothers, but before we explain it away, as it has been, with gendered suggestions of mental illness, attention seeking, etc., let’s also remember this story about a father — and high-ranking former Bush official — who shot his autistic 12-year-old son in a murder-suicide inside their suburban McLean home.

Three problems.

First, again, the discourse of overwhelmed parented in these murder cases is not the dominate correlation. The dominant correlation relates to ideology about the fundamental nature of disability.

Second, Lee doesn't dig into the evidence behind the "news of overwhelmed parents," but just assumes that this discourse is accurate. It isn't.

Third, although I believe that Lee and the others genuinely fear that, somehow, a highly successful person with a disability might somehow erode support for those whose delays and difficulties are more acute. They aren't just making up the fear. They feel it. But why? No one cites any examples or evidence for how a successful person with autism might erode support for those for whom the challenges are more acute. As near as I can tell, it's just a gut feeling. I think it's mistaken.

The author suggests:

Being a parent of a child with severe autism in no way diminishes my respect and admiration for Jerry Seinfeld and others striving for autism acceptance. What I am proposing is separating the high-functioning end of the spectrum — perhaps calling it something else — so that we can focus on the urgent and looming issue at hand.

We had that. It was called Asperger's Syndrome. The Aspie diagnosis was a point of identity for some inside the community, but it was deemed non-scientifically accurate because there was no clear line between Aspie and Autism. Rather, there's a very large spectrum. That's our best understanding of what the condition actually is. How it makes us feel shouldn't override the science.

And here's the part where my critique of Lee gets personal. She's at one of the great universities of the world. She has a book coming out on the future of medicine from Simon & Schuster. And she concludes:

It’s only a matter of time before another child is killed, and we won’t even remember their names. We need to call autism what it is: a public health emergency, no less deadly and devastating than Ebola.

She's right that it's only another time before another child is killed. It's not, though, a public health emergency. It's a discourse and representation emergency. It's a political emergency. It's a language emergency.

I see Seinfeld's coming out as a positive, helping to shift the conversation, at least potentially. I see this Salon piece as very troubling, feeding into a kind of othering that isn't helpful and might, in fact, correlate strongly with those who do the worst things imaginable to their children.