lundi 17 août 2015

Autism, Then And Now: Sweeping New Book Puts ‘Epidemic’ In Perspective

Autism, Then And Now: Sweeping New Book Puts ‘Epidemic’ In Perspective

In May of 2000, Wired magazine writer Steve Silberman was covering an Alaskan cruise for a hundred distinguished computer programmers, and asked one of the most distinguished, Larry Wall, creator of the programming language Perl, if he could interview him later on at home.

“Sure,” was the answer. “But just so you know, we have an autistic daughter.”

Six months later, Silberman was writing about another high-profile Silicon Valley family, and asked for another home interview. The reply was eerily similar: Yes, but “I should tell you, we have an autistic daughter.”

Soon after, Silberman recalls, he was sitting at a San Francisco cafe and telling a friend about that odd coincidence, when “a woman at the next table blurted out, ‘Do you realize what’s happening? I’m a special-ed teacher in Silicon Valley. There is an epidemic of autism in Silicon Valley. Something terrible is happening to our children.”

Author Steve Silberman (courtesy)

Author Steve Silberman (courtesy)

He got a chill — the kind of chill that makes him want to start reporting and researching. At that point, he says, “I was very naive about autism. Like most people at the time, everything I knew about autism I had learned from ‘Rain Man.’ ”

He is naive no longer. First, he wrote a landmark article in Wired, “The Geek Syndrome,” about why the autism diagnoses in Silicon Valley might be going up. (The theory: People carrying genes for autism who were working in the technology industry had more social opportunities to meet one another and have children together than they’d ever had in history — a process that geneticists call “assortative mating.”)

And now, Silberman has written “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” a history of society’s changing attitudes toward autism, as seen through the eyes of parents, clinicians and autistic people themselves. It’s due out Aug. 25 and — if my appreciation for its breadth, depth and power is any indication — it’s likely to make a big splash. (Also provoke some controversy, given its unflinching takes on some of autism’s more contentious issues, from possible causes to biomedical “cures”.)

I asked Silberman to answer what seem to me the most burning questions about autism: Is prevalence really rising? How to explain kids who lose their diagnosis? What does the research promise? Our conversation, lightly edited, beginning with more about “The Geek Syndrome”:

SS: The article came out, it was very well received, and I got tons of email about it — and then I kept getting email about it for 10 years, which is very unusual. But here’s the thing: When I wrote the article, most of the families I talked to were keenly interested in what had caused their child’s autism. Some believed that it was vaccines, some believed that it was environmental contaminants, some thought it was genetics.

But by the time a decade had gone by, what they were worried about was not what had caused their child’s autism; what they were worried about was the shocking lack of services for autistic teenagers and adults — like transitional services to help them go from school to the workplace, services to help them learn how to live independently in the community, and so on.

So I began to be haunted by the fact that my narrow focus on the dynamics of autism in high-tech communities had, in a sense, led me astray, and that there was a much larger problem for autistic people and their families worldwide, which is the availability of services. That’s what parents are really wrestling with on a day-to-day basis.

neurotribes

So you moved with the times…and also, services are something we can actually do something about right now.

Exactly. That’s actually a more profound statement than one might think. Some very well-meaning people think that society’s best investment would be to ‘cure autism.’ Well, we’ve been working on curing schizophrenia for a very long time, and for decades, psychoanalysts were working on ‘curing’ homosexuality. But these are very, very complex genetic conditions, and have a lot of contributing factors; perhaps a much more humane thing to do is to ensure that autistic people and their families have access to happier, healthier, safer, more secure, more engaged and more productive lives. That goal is within our reach right now and doesn’t depend on the next medical breakthrough.

You’ve done a lot of reporting over the years into potential risk factors for autism in the environment — this week’s cause-of-autism du jour — and you know what happens to those stories: They make a big splash, everyone’s talking about them, and then they quietly go away.

If we look at what has been blamed for causing autism over the last few years, it’s everything from autoimmune dysfunction, impaired sugar metabolism, antidepressants in the water supply, mitochondrial disorders, living near a freeway, too little oxytocin, too much testosterone… the list goes on and on.

Might some of those things contribute to autism? Sure. But what we have to remember is that there have been, in recent years, at least three big studies that look at the crucial question: Is autism actually increasing in the population or is it just that we’re getting better at diagnosing it, and becoming more aware of it as a society, and learning how to spot it in early childhood?

And the conclusion of all three studies — including one in Sweden in 2015 that involved over 1 million children, including 19,000 twin pairs, and one in England by a researcher named Terry Brugha — was that the rates of autism have not really been going up. What has been going up is the rates of diagnosis. So it’s an epidemic of recognition, really.

So given the latest, biggest, best studies, it really does look like that’s what’s going on, and not an actual rise in prevalence?

Right. Let me play my own devil’s advocate for a moment and say that maybe there has been some true increase in prevalence in autism in recent years. The question is, how much of that is a tiny layer on top of this huge iceberg of our increased ability to recognize and diagnose autism? Those studies — and we need more of them, because the assumption that we’re in the middle of an ‘autism epidemic’ is so widespread, even among people who fund research — all suggest that what we really need to be doing is taking care of the autistic people who are already here.

And the problem is that many of the environmental risk factor studies proceed from the question: Is this a plausible mechanism that could create a risk factor for autism? And it turns out many, many different things may contribute to autism and no two cases of autism are the same.

And that’s true for genetics, too: We’ve found over a thousand candidate genes for autism but every genetic case of autism is subtly different from the next. So we can continue to focus on: Is it Monsanto, is it GMOs, is it WiFi? Or we can deal with the fact that there are many, many more autistic adults than there are autistic children, and yet a recently released report from the Government Accountability Office found that the NIH investment in research on improving the lives of autistic adults has actually gone down.

Huge amounts of money — millions and millions of dollars — are going into chasing down environmental risk factors or fishing expeditions in large genetic databases. Is this interesting as science? Yes, it’s fantastic. These days, any scientist who’s working in autism has a full-employment plan courtesy of the NIH and the hysteria over the alleged epidemic. I have a lot of friends who work in autism science.

But at the same time, we’re conveniently ignoring the fate of the autistic people who are struggling to get by, day to day, with inadequate health care, inadequate access to employment, and suffering from chronic anxiety and other co-morbidities of autism, which are also under-researched.

One of the themes of my book is what’s called neurodiversity: the notion that variations in human cognitive style are not an error of nature that needs to be fixed, but a kind of diversity that could prove to be a strength for our society over the long term, just like biodiversity proves to be a survival advantage for a rainforest.

Some people say, well, neurodiversity, that’s all well and good, but shouldn’t we be trying to help the kids who are suffering and their families? Absolutely, yes! One of the main things that parents of autistic children and autistic people themselves deal with is seizures: About a third of people diagnosed with autism suffer from epilepsy at some point in their lives. So we should be looking into that instead of saying let’s send another million dollars to a genomic institute in China to chase down another 20 candidate genes.

About the autistic kids who ‘lose the diagnosis’ — what do you find the most persuasive explanation?

The phenomenon of children losing their autism diagnoses as they get older, which is often framed as “recovery,” is nothing new. Michael Rutter, the great British pioneer of autism genetic research, reported in 1970 — when the criteria for diagnosis were still very strict and narrow — that by the time the kids he studied got to adulthood, 1.5 percent of them were ‘functioning normally,’ and another quarter of them were functioning at a good-to-fair level.

A follow-up on that study in 1999 found that 17 percent of the kids had lost their diagnosis by the time they reached adulthood. So losing the diagnosis is not something that is particularly scarce. But the question is, what does losing the diagnosis really mean? It’s very easy to fixate on that as the goal.

But even many of the surprisingly large number of children who have lost their diagnosis over the years still have residual difficulties with language, attention span, executive functioning and emotional regulation.

So if we think that ‘recovery’ is going to absolve us as a society — ‘Who cares about investing in services? These kids can recover, let’s just have more of that!’ — that’s an illusion. Even many kids who lose the autism or pervasive developmental disorder diagnosis end up being re-diagnosed with ADHD or depression or chronic anxiety.

Remember that autism is a diagnosis that there are no biomarkers for yet, though there’s a lot of research into that. It’s not something that shows up on a brain scan — you get the diagnosis because clinicians observe you for several hours and decide that the overall constellation of your behavior is indicative of autism. It’s not like HIV where suddenly there are untraceably low levels of a virus in somebody’s blood. It’s all subjective clinical observation.

Because autism has been so stigmatized, there’s almost a fetish about the loss of diagnosis, but those kids and those adults are often still struggling.

And check this out: The very first patient of Leo Kanner — the guy who took credit for discovering autism in the 1940s — whose name is Donald Triplett, is doing very well now: he’s traveling around the world, he worked in a bank for a long time, he loves to see foreign countries and foreign cultures. Is he ‘recovered’? No — he’s still very autistic. But his skills have increased and broadened with maturity, just like they do for anyone else.

I spent a wonderful couple of days with Mark Rimland, whose father Bernie Rimland invented the biomedical cure movement. Mark is a wonderful guy, but he’s still profoundly autistic. At the same time, he’s one of the happiest, sweetest, most earnest and hilarious people I’ve ever met. He’s a very gifted artist, he gives his own gallery shows in Los Angeles, and he’s still extremely autistic.

But what he has — which turned out to be of more value than the biomedical treatments his father tried on him — is a supportive community who loves him for who he is. Everybody in his neighborhood understands that he’s odd and he’s eccentric, and some of them know it’s autism and some of them don’t, but they make space for him because they love him.

One of the things I like best about ‘NeuroTribes,’ aside from the very vivid historical story it tells and the characters brought to life, is that a lot of it has quite a positive spin, as if asking, ‘What if we just look at this with a more positive twist?’

Yes, and I’ll tell you why. It’s not about taking some Pollyanna attitude and looking on the bright side, and there is a lot of suffering and tragedy in my book too. Autism is tough for both people on the spectrum and their loved ones, particularly in the absence of adequate support and resources.

But there been a lot of research into how the parents of disabled people feel about their lives, and it turns out that parents suffer more if they frame their child’s disability in an intensely negative light and feel hopeless about their child’s future. So when I read blog posts by anti-vaccine activists who call their children ‘brain-injured’ and depict them as hapless victims of a global conspiracy between big pharma and corrupt government officials — obviously that’s a very negative way to frame your own kids, who may grow up to read those posts someday.

We need better stories to tell about the potential of our children and these people who are really our neighbors. Once you learn to see what autism looks like, said Hans Asperger, you see it everywhere. Autistic people are all around us, though we don’t always recognize them. It’s not just some kid in a clinic a thousand miles away — it’s also the woman who lives across the street, and keeps to herself, and knows the name of every bird and flower in the neighborhood, and calms her anxiety by knitting.

So what stories are we going to tell about those people? Are we going to say, ‘Oh, they were brain injured by a big pharma conspiracy?’ Or are we going to say, ‘These people are valuable, and they have contributions to make to society that society has not yet tapped. So let’s make reasonable accommodations, as we have for blind people and people who use wheelchairs. Let’s make reasonable accommodations so they can come to class and find a job and contribute the gifts of their atypical minds to the evolution of society.’

And as you write, it’s now autistic people themselves who are taking control of their own stories. Which leads me to my little linguistic post-script question: You write that we should use ‘autistic’ as a noun for people who have autism. But that goes against what I’ve been taught about using ‘people with’ language — you say ‘people with diabetes’ instead of ‘diabetics’ because they’re not defined by the diagnosis. So…Really?

Yes, because autistic people prefer it to “with autism.” Because as Jim Sinclair, the guy who was the pioneer of the autism rights movement, said in an essay called ‘Why I Dislike Person-First Language’, ‘Saying “person with autism” suggests that autism is something bad — so bad that is isn’t even consistent with being a person.’ You don’t call someone ‘a woman with athleticism’ — you call her an athlete.

I completely respect the desire in some disabled communities to highlight the fact that these are people we’re talking about, not walking disabilities. But autism is a very special case, and it’s because autism and the families of autistic people have been so stigmatized for decades.

One of the main reasons why it appears that autism came up out of nowhere in the early ‘90s is because before that, autistic kids were often institutionalized because of the mistaken belief that ‘refrigerator mothers’ were the cause of autism. I spoke to parents who were literally told by their psychoanalysts to remove their children’s photos from the family album after they were put in institutions. The children literally disappeared. Because bad parenting was implicated as the cause, it was a source of shame and stigma for the families involved. So families became isolated from each other.

That was the great revolution of the autism parents movement, which was also started by Bernard Rimland, the same guy who launched the ‘cure autism’ movement, and a woman named Ruth Christ Sullivan, whose son, Joe Sullivan, was one of Dustin Hoffman’s real-life models for the character Raymond Babbitt in ‘Rain Man.’ As a young woman, she had been active in the civil rights movement in the South, and once she realized that Joe was autistic, and that there was no help for families like hers whatsoever, and that kids like Joe were excluded from schools, she said, ‘Well, parents like us need our own movement!’ And so, in the 1960s, she launched what is now known as the Autism Society of America.

I want my book to remind people that the original goal of the autism parents’ movement was not to cure their children or discover the cause of autism, it was to change the world so that it was a more comfortable place for autistic people and their families.

Readers, reactions?

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