Global Crisis

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, 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.

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.

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.

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 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 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.

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. 

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.

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

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.

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.