27 Feb 2008

Wired on autism

Who'd have guessed, a (mostly) accurate, informative article about autism in the media!

The article in Wired, features Amanda Baggs and Michelle Dawson, so I shouldn't be too surprised; they're both incredible, knowledgeable and smart women who have done much to challenge the many myths about autism.

The first interview in the article is with Amanda, and describes how the increasing popularity of her YouTube video, caught the attention of the media;

By 300,000, the TV people came calling, hearts warmed by the story of a young woman's fiery spirit and the rare glimpse into what has long been regarded as the solitary imprisonment of the autistic mind. "I've said a million times that I'm not trapped in my own world,'" Baggs says. "Yet what do most of these news stories lead with? Saying exactly that."
(my emphasis)

How anyone could spout that "trapped" nonsense, especially after watching Amanda's videos, and reading just about anything she has written, is just astonishing, but somehow, some people manage it.

The journalist tells how he got the opinion of an (unfortunately unnamed) "world leading authority on autism" to view the video, and he commented that such a severely autistic person as she couldn't possibly have produced it unaided.
I think someone needs to read and learn some more.

The technological advancements over the past few years have benefited autistic people, perhaps even more than they have benefited everyone else;

Baggs is part of an increasingly visible and highly networked community of autistics. Over the past decade, this group has benefited enormously from the Internet as well as innovations like type-to-speech software. Baggs may never have considered herself trapped in her own world, but thanks to technology, she can communicate with the same speed and specificity as someone using spoken language.

Personally, the community available via the internet, has been invaluable to me, as a parent seeking advice, knowledge and like-minded people.

Amanda describes the growing autistic advocacy movement;

"I remember in '99," she says, "seeing a number of gay pride Web sites. I envied how many there were and wished there was something like that for autism. Now there is." The message: We're here. We're weird. Get used to it.
(my emphasis)

Oh I love it! How much better my son's future will be thanks to the hard work, research and activism of people like Amanda, Michelle, Ed, Autism Diva, Joel, Larry and so many others.

The new approach to autism research by some neuroscientists is described;

[Autism] shouldn't be thought of as a disease to be eradicated. It may be that the autistic brain is not defective but simply different — an example of the variety of human development. These researchers assert that the focus on finding a cure for autism — the disease model — has kept science from asking fundamental questions about how autistic brains function.

This is a much more interesting question.

Neuroscientist Thomas Zeffiro is quoted as saying;

If Amanda Baggs had walked into my clinic five years ago, I would have said she was a low-functioning autistic with significant cognitive impairment. And I would have been totally wrong.

The origins of the categorisation of autism by Kanner and Asperger are described, as well as their views on autistic intelligence;

Kanner spoke of an array of mental skills, "islets of ability" — vocabulary, memory, and problem-solving that "bespeak good intelligence." Asperger, too, was struck by "a particular originality of thought and experience." Yet over the years, those islets attracted scientific interest only when they were amazing — savant-level capabilities in areas such as music, mathematics, and drawing. For the millions of people with autism who weren't savants, the general view was that their condition was tragic, their brainpower lacking.
and later

In 1943, Kanner wrote that while many of the children he examined "were at one time or another looked upon as feebleminded, they are all unquestionably endowed with good cognitive potentialities."

Why were the observations of the first two autism researchers on the matter of intelligence, almost ignored?

Also featured in the Wired article, is Laurent Mottron, a psychiatrist working in Montreal and who said;
"I wanted to go as far as I could to show that their perception — their brains — are totally different." Not damaged. Not dysfunctional. Just different.
Mottron has focused on the enhanced visual, spatial, and auditory skills of many autistic people when compared to neurotypicals, whereas most other researchers ignore what they term these "anomalous peaks of ability," to focus on the better funded questions like what is wrong, what causes it and how do we cure it.

I found this section most interesting;

Mottron draws a parallel with homosexuality. Until 1974, psychiatry's bible, the Diagnostic and Statistical Manual of Mental Disorders, described being gay as a mental illness. Someday, Mottron says, we'll look back on today's ideas about autism with the same sense of shame that we now feel when talking about psychology's pre-1974 views on sexuality. "We want to break the idea that autism should definitely be suppressed," he says.

The article continues with a brief profile of Michelle Dawson, and her unconventional route into autism research, and her recent first authorship of a study called "The Level and Nature of Autistic Intelligence." This work compared two types of test used to assess intelligence and:

suggests the Wechsler scores give only a glimpse of the autistics' intelligence, whereas the Raven — the gold standard of fluid intelligence testing — reveals the true, or at least truer, level of general intelligence.

The Wechsler Scale is described as one which;

assesses crystallized skills like acquired vocabulary, making correct change, or knowing that milk goes in the fridge and cereal in the cupboard — learned information that most people intuit or recall almost automatically.

As such, it must be recognised that this is an inappropriate tool to use with people who have difficulty with verbal communication. Dawson is paraphrased as saying;

you wouldn't give a blind person a test heavily dependent on vision and interpret their poor score as an accurate measure of intelligence.

Indeed. It can be hoped that other autism researchers follow her lead, and that it becomes common practice to use the obviously more suitable Raven test in the future.

Obviously, the usual journalistic balance is achieved by quoting those who disagree with this direction;

In the vast majority of journal articles, autism is referred to as a disorder, and the majority of neuro-psychiatric experts will tell you that the description fits — something is wrong with the autistic brain. UCSF's Merzenich, who agrees that conventional intelligence-testing tools are misleading, still doesn't think the difference model makes sense. Many autistics are probably smarter than we think, he says. But there's little question that more severe autism is characterized by what Merzenich terms "grossly abnormal" brain development that can lead to a "catastrophic end state." Denying this reality, he says, is misguided. Yale's Volkmar likens it to telling a physically disabled person: "You don't need a wheelchair. Walk!"

Volkmar's remark is nonsensical and misguided. No-one is suggesting such a thing. More accurate research can only benefit autistic people. Knowing how my son's brain works, will help me know how to target his education better, to suit his skills and difficulties. Knowing that many, or most autistic people are much more intelligent than supposed, means there is a moral imperative to help them to find better ways of communicating, since that is usually the primary difficulty. How much effort has really been spent on trying to teach the autistic people languishing in group homes, how to type, use picture symbols, sign language, or other forms of augmentative communication. I would say this work is the absolute opposite of what Volkmar claims; it's more like, "Here, have a wheelchair, you can become mobile."

The Wired article continues;

Should autism be treated? Yes, says Baggs, it should be treated with respect. "People aren't interested in us functioning with the brains we have," she says, because autism is considered to be outside the range of normal variability. "I don't fit the stereotype of autism. But who does?" she asks, hammering especially hard on the keyboard. "The definition of autism is so fluid and changing every few years." What's exciting, she says, is that Mottron and other scientists have "found universal strengths where others usually look for universal deficits." Neuro-cognitive science, she says, is finally catching up to what she and many other adults with autism have been saying all along.

This is great news and can only benefit people like my son.

(Amanda would like people to know that "treated with respect" was a quote from D.J. Savarese, and another misleading part of the interview is mentioned in her latest blog post.)


Club 166 said...

By Mottron:

"...Yet most scientists who come across these skills classify them as "anomalous peaks of ability," set them aside, and return to the questions that drive most research: What's wrong with the autistic brain? Can we find the genes responsible so that we can someday cure it? Is there a unifying theory of autism? With severe autistics, cognitive strengths are even more apt to be overlooked because these individuals have such obvious deficits and are so hard to test. ..."

I think an important point is that perhaps we are placing too much emphasis on "fixing what is missing" in autistics, and not enough time "developing their strengths".

If the gold standard for success is being able to support oneself in society, perhaps we should be paying much more attention to supporting those unique skills that each autistic individual has, while still supporting efforts at doing things like increasing their ease of communication.


Anonymous said...

I remember a Dr telling me once that I should say "I have epilepsy" instead of calling myself an epileptic. He said that by saying "I have" is saying that it is part of me but so is the fact that I love literature and the theatre, therefore it does not discriminate. It has been one of the best bits of advice I have ever been given.
Miche xx

Sharon McDaid said...

Hi Miche, I almost always say "autistic person" because that is what most people call themselves, and I follow their own preferences. The reasoning for this is explained by this article, Why I dislike person first language. The reasons given are that autism is an essential, inseparable part of the person, like gender and nationality. You're not a person with femaleness, gorgeousness and Irishness, you're a gorgeous, Irish woman! Also, distancing the characteristic from the person suggests it is something bad.

You obviously make the decision on how you want want your epilepsy to be referred to. I would never call you an epileptic. I wouldn't have called Mum a cancer patient but a woman with cancer; the cancer was always referred to as separate, something that just happened to occur and wholly negative.

Joe, I agree with that. It can only help to see what an individual is skilled at, and in no way means that person has less entitlement to the necessary support.

abfh said...

Volkmar is sounding increasingly more desperate as he struggles to defend the lucrative position he created for himself when he played a major role in adding Asperger Syndrome (and the general concept of the autism spectrum) to the DSM-IV in 1994.

He deliberately promoted a false stereotype that all autistics need extensive help from psychiatrists to do the simplest things in life, while conveniently ignoring the large number of autistic adults who already were (and, in some families, had been for generations) successfully integrated into society.

A more accurate wheelchair analogy might be to say that Volkmar and his accomplices grabbed people who were walking along the street, forced them into wheelchairs, tied their legs so that they couldn't move, and then pointed to them and said, "Look at how much help these unfortunate people need because they can't walk without their wheelchairs!"

Anonymous said...

Actually, the full thing I said about the gay pride sites, was that there were a lot of bad ones back then. But there were so many that I had the luxury of saying "These ones are bad."

So then, I was thinking, I wish there were enough autism-positive sites that I could have the luxury of thinking "Wow, these ones are really crappy," instead of just being grateful any existed at all.

And I think we've gotten there, for better or for worse.

Sharon McDaid said...

I didn't know that about Volkmar, Abfh. There's a heck of a lot I don't know, but thanks for lessening the list slightly!

Your wheelchair analogy is more apt too.

Thanks for the clarification Amanda. I can see the increased number of autism-positive sites in just the past few years, and I suppose it is a sort of luxury to have sufficient numbers to include the good and not so good.

Alyric said...

This is terrifically important, and thank you for thinking of it:

"Why were the observations of the first two autism researchers on the matter of intelligence, almost ignored?"

A really good question. I vaguely remember reading somewhere that Kanner got quite distressed by what was being called 'autism' circa 1972. I shall have to go and look it up - trying really hard here to remember where the heck I read something and to come up with the right citation:) It's worth a mini treatise at the very least.

Otherwise, the Wired article is about the best thing I've read in quite a while.

Alyric said...

Here t'is

Kanner 1965..

"Moreover, it became a habit to dilute the original concept of infantile autism by diagnosing it in many disparate conditions which show one or another isolated symptom found as a part feature of the overall syndrome. Almost overnight, the country seemed to be populated by a multitude of autistic children, and somehow this trend became noticeable overseas as well. Mentally defective children who displayed bizarre behavior were promptly labeled autistic and, in accordance with preconceived notions, both parents were urged to undergo protracted psychotherapy in addition to treatment directed toward the defective child's own supposedly underlying emotional problem."

Courtesy of the mecca for historical information - or anything else on autism: neurodiversity.com


Sharon McDaid said...

Thanks for that Alyric.

dinah said...

Sharon said "Knowing that many, or most autistic people are much more intelligent than supposed, means there is a moral imperative to help them to find better ways of communicating, since that is usually the primary difficulty. How much effort has really been spent on trying to teach the autistic people languishing in group homes, how to type, use picture symbols, sign language, or other forms of augmentative communication."
That moral imperative is why the Autreach IT project exists - got a long way to go but it's happening, see http://autreach.co.uk
In say three years time it may have had a real impact. Both Mental capacity and disability rights codes of practice now include the right to access information and communication technology. I hope there will be lobbying for the equivalent worldwide - it worked in the UK.

Sharon McDaid said...

Hi Dinah and thanks for highlighting the work by Autreach.

Scope are running a campaign about the need for communication aids which will hopefully help more people.