Think Differently Campaign and Treating Autism

The Independent today published a letter signed by leading members of Treating Autism, [TA] a UK charity which believes that autism is treatable using the biomedical methods championed by Defeat Autism Now!  Their main complaint against the National Autistic Society’s Think Differently Campaign is that it paints too rosy a picture of autism, ignores the suffering of their children and refuses to acknowledge that autism is treatable using the aforementioned biomedical methods. Here is the letter in full, interspersed with my comments

We, parents of autistic children, wish to repudiate the National Autistic Society and its claim to speak for us and our autistic children. In particular, we demand the withdrawal of the latest leaflet (“Think Differently about Autism”) calling for public understanding of autism, complete with a website of supportive celebs.

Hope for people with autism does not lie in celebrity endorsement and a pretence that autism is normal but in the torrent of medical research pouring out of the United States. A model of autism as a genetic predisposition combined with precipitating environmental damages is being developed in the US, with new discoveries almost weekly. These developments offer real hope for those affected by autism.

The leaflet does not pretend that autistic people are normal. What is normal about the words on the front of the leaflet, “He gave you lovely hugs but then he’d bite you.” ? The autism model emerging in the United States is just a hypothesis. Nobody disputes the truism that autism results from a combination of genetic and environmental factors. But I am unaware of any “environmental damages” that have been reliably identified in the scientific literature.

What is the contribution of the NAS at this exciting time? The only contribution is a leaflet with pictures of people who “choose not to speak” and a plea for public understanding. The public should know that the NAS is riven with feuding between those who believe autism is “normal” and those who believe it is a disability which should be treated.

Actually the leaflet pictures one young adult who “prefers not to speak.” I am certain that the NAS would not have used those words without checking first with the young man in question and his family.

The NAS reflects the diversity of opinion that exists within the world of autism and we have some vigorous debates. But they are conducted with mutual respect by people who continue to work together for the greater good of all autistic people and their families. That is why the NAS has experienced 20 per cent growth this year. Not what you’d expect from an organization “riven with feuding.”

One of our number signed this letter en route to a conference run by the National Autistic Association of America whose speakers include a representative from the US-government National Institute of Health speaking on the part played by the environment in the autism epidemic. Only an ocean but a world away from the patronising claptrap put out by the National Autistic Society of the UK.

This is potentially misleading. Thomas Insel of the NIH is speaking at the NAA conference. But he is not a member of NAA and it is unlikely that he is going there to endorse the NAA opinion that there is an autism epidemic caused by the mercury content of vaccines, which can be cured by chelation.

The  NAS has a research arm called Research Autism. It has a website. None of this US research gets a mention. People with autism are sometimes said jokingly to be on another planet. It must be the one where the NAS is a well-informed, authoritative campaigning organisation and a powerful voice for change.

Research Autism has been established with NAS support but is independent of the NAS. It seeks to promote evidence based research on the efficacy of interventions for autism. If the US research is not mentioned it is because it does not satisfy Research Autism’s criteria for inclusion.

Autistic people sometimes refer to themselves as coming from another planet and they are not joking. They are made to feel like aliens by the lack of understanding and acceptance that they encounter on a daily basis. If the Think Differently campaign helps to change that, both it and the NAS will have nothing to be ashamed of.

a real debate about curing autism.

A recent report in the Guardian provoked some furious responses in their  Comment is Free section. The story itself was a fairly innocuous account of another study by Simon Baron-Cohen in support of his theory that exposure to elevated levels of testosterone in  the womb carries a predisposition to autism. The furore came in response to the final paragraphs.

If it does turn out ultimately that testosterone is a causal factor in autism it may not be possible or even ethical to do anything to change it though. Previous studies suggest that the level is mostly down to the child’s genes. Researchers don’t know which environmental factors are important.

There is a very live debate about whether autism should simply be recognised as an atypical pattern of development like left handedness which doesn’t necessarily need treatment,” said Prof Baron-Cohen, “It just needs to be recognised as different and maybe supported educationally but not cured or eradicated.”

This is my summary of the criticism generated by Simon Baron-Cohen’s statement.

The very idea! How dare anyone suggest that it is OK to be autistic? It may be OK for high functioning Asperger types and their parents. But what about those of us who struggle daily with severely autistic children who cannot speak, who tantrum and self injure, who cannot manage their basic physical needs without support  and are going to end up in life-long residential care?

And it seems a very reasonable criticism to make. If your child is miserable or angry and has little chance of living an independant life why shouldn’t you want to cure him? I know parents who are actively seeking a cure for their child, who also argue for more acceptance and understanding from society for autistic people. Some of these parents are very supportive of autistic adults who have made it plain that they do not want to be cured. When I questioned this, one told me that she respected ANON’s right to be accepted for who he was but her child could not make that choice. He was low functioning and non-verbal. She would love him to progress to ANON’s level and be able to choose for himself. Until then she was going to carry on looking for a cure.

Reading through the comments on the Guardian website one or two things struck me. Parents who were angry with Professor Baron-Cohen were at pains to emphasise the negative aspects of their children’s autism. mickeydolenz wrote

Would I like my 2 autistic boys to live independently of me in the future? Absolutely. Would I want them to have families of their own? Absolutely. Would I want them to not be continuously frustrated and angry at the world around them? Of course. I really can’t see the argument against curing.

Then purelymedicinal, responded, declaring herself as Mrs Mickey D, and saying that she did not believe in a cure for autism because it was genetic. Then, when mogrammy intervened to argue that autism was a biomedical illness and the answers were all in Bryan Jepson’s new book mickeydolenz retorted,

mogrammy – no, sorry – that’s twaddle. It is a neurological condition – and that’s not theory, it’s fact. It’s utterly repugnant that snake-oil merchants like the one you cite make their living from the vulnerable.

Someone else chimed in to defend the Gluten Free/Casein Free diet and recommend Luke Jackson’s book on the subject. Luke is autistic. He is a clear example that Asperger’s Syndrome is not a mild form of autism. it can be just as severe in its own right as any ASD. The diet does not help with his autism. It helps with his food intolerances. mickeydolenz replied to this as well.

I utterly love my autistic children to pieces and I am at turns fascinated and depressed by their behaviour, as well as piss myself laughing with them. But I am ever curious as to how their brain works and how to unlock their world.

I am glad that mickey can laugh with his kids and that they are not “continuously frustrated and angry at the world  around them,” as he argued at the start of the discussion. This is not a cheap shot at mickey. At the start of the discussion he was angry at the idea that autism could be a positive thing. By the end he was arguing against the idea that his children’s lives would be forever joyless unless he bought the snake oil.

After someone posted an alert on one of the egroups on Yahoo the discussion was swamped for a while by mercury fanatics. But mickey, his wife and others kept the discussion going. They were asking questions and interested in each others answers rather than hammering home a point of view. I learned a lot from reading this discussion.

It confirmed that there are not just two camps – the curebie fanatics and the neurodiverse – slugging it out with each other in the blogosphere. The question is more complex than that.

I would like to think that those of us who advocate for autism acceptance are equally open to argument and discussion. We are not fanatics or timeservers. We are people who live and laugh and love and want, not better children, but a better world for our children. (with apologies to Paul Foot)

Apna Asmaan

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“Learning to accept autistic kids is crucial.” 

So says Kaushik Roy, the father of a son who, according to his father “is mildly autistic, a slow learner and not like regular children.”  Roy is a successful businessman with a passion for film that is hardly surprising when you consider that he is the nephew of  Bimal Roy, one of India’s most successful film directors.

Perhaps more surprisingly, he took time out from a demanding business career to make a film, inspired by his son.  Apna Asmaan is a film I really want to see after reading Kaushik Roy’s inspirational comments on the film’s web site. There is also an interview in which he says

The film started in a personal way though it is not autobiographical. It started with a dream in 1999. I dreamt that my younger son Orko (who is mildly autistic, a slow learner and not like regular children) was doing extremely well in life, became famous but did not recognise me. Immediately, I told my wife Nina. This triggered the thought. My son was fine the way he is and he had started drawing and painting. We saw in him the urge to do something and he was also proud of the recognition he got when people appreciated his work. We had an exhibition of his paintings too.

[...]

To some extent, Apna Asmaan is real – the frustration of the parents when they have such a child is real. But the story had to unfold like a drama. I wanted to make a point come through the film – that is, learning to accept is critical. If not, the parents will be unhappy.

The brain booster in the film is allegorical. Turning a disabled child into a genius – though this is fictional, it is hugely relatable in India. People are looking at magical remedies – even visiting babas. So I brought this in and there are two doctors — one rational and the other maverick.

I have no idea if this film will make it to general release in the west. I do hope so. And I would appreciate the opinions of my Indian readership  [Ajai? Merry?] on this film.

autism, demons and disordered thinking

Kev has just blogged about an interesting discussion on ABMD, an email list devoted to biomedical interventions for autism. The bare bones are that a parent asked some obvious questions about how many recovered kids there were and where was the research that followed them up. From the subsequent replies three points struck me.

 1. The Biomedical Approach is not a cohesive whole

Within the biomedical movement there are different strands of opinion. I remember discussions ten years ago about biomedical interventions in which vaccines were barely mentioned, if at all. The received wisdom then was that autistic kids were more prone to infections than their NT peers. Ear infections seemed a common culprit based on parental anecdotes and strep was in there too. (NB Both these infections regularly afflict non-autistic kids as well.) Antibiotics were prescribed that got rid of the infections but also disrupted the beneficial bacteria in the children’s guts. This led to yeast infections which led to leaky gut syndrome and allowed partially digested proteins to pass through the gut into the blood stream.

Some of these proteins would cross the blood brain barrier in sufficient quantities to bind with receptors in the brain and create a condition analogous with opium addiction. When your child was happy, flapping and rocking, he was actually high on the effects of these proteins that had a narcotic effect on his brain. And when he was tantrumming, self injuring and screaming he was suffering the withdrawal symptoms because he needed another fix of the foods that fed his addiction.

The ‘cure’ was simple enough. Exclude the guilty proteins with a gluten and casein free diet. Heal the gut with antifungal drugs and use vitamin supplements to restore a healthy balance. The science behind this theory has never been adequately tested. It could be that some autistic people do have a natural tendency to react badly to certain foods. Avoiding these foods will avoid the bad reactions. Will it avoid the autism? That depends on whether the dietary problems cause the autism or the autism causes the dietary probems. Or it may just be an unrelated coincidence.

Even if it turns out to be nonsense this is fairly benign nonsense. Plenty of people with food intolerances survive on a diet that excludes dairy, wheat and similar grain products. So can autistic people. But somewhere along the line vaccine damage and heavy metal poisoning got factored in and remedies like mega doses of vitamins, chelation, lupron injections and other powerful biochemical interruptions to the systems of autistic children were introduced. I take comfort from the fact that parents and physicians who favour the old dietary and nutritional interventions are not all convinced by the science or the ethics of the newer, more radical interventions.

2. Recovery Does Not Mean Cure

Some of the parents reported how their child had ‘recovered’ from autism and continued to improve on biomedical interventions. Others reported on ‘recovered’ children who were still autistic! Recovered seems to mean being mainstreamed for many parents. If the kid can manage in a regular classroom they are deemed to be ‘cured’ or ‘recovered’ or ‘rescued’ or whateve the word of the day that is used to describe inclusion.

Essentially these parents are saying that, “Bad things happen to kids who stand out, who are different. The fault is with the child. If I can make my child indistinguhable from his peers he will be accepted. I want a Stepford child.”  The kid has to act normal whether he is or he isn’t.

3. Parents intervene because we have to do something.

A lot of parents seem to be long term users of biomedical interventions who persist despite the lack of success. They remind me of the parents in the Autism Speaks video who were following the same interventions. At the time I wrote this.

Some of those in the video referred to doctors’ appointments, therapies and interventions costing tens of thousands of dollars a year. But the parents seemed not to expect them to work. They talk of a lifetime of battling with autism and expect their children to still be autistic when they, the parents are dead.

Autism is characterized as a barrier to be overcome. But they do not hold out much hope for their own children. They are trying every therapy under the sun but the big picture is about research that will lead to prevention and cure.

For me the video is not about autism as such. It is about a particular psychological response to autism. There is an ideology around autism that helps to shape that response. In opposing the video I am not denying the experiences of parents. I shared many of those experiences when my son was growing up. I am not denying the lack of services or support. I am not denying the lack of understanding outside the autism community. I am not denying that autism itself can be the source of immense difficulties.

I am concerned to deny the ideology that demonizes autism and distorts the facts in order to justify itself.

These parents persist in fighting their demonized version of autism because they have to. To do otherwise would be to give up on their children – the ultimate betrayal. If only they could give up on their demons instead and accept their children for who they are. That is when the real fight begins, when you fight with your child against a system that denies their right to acceptance, understanding and support.

A tale of two autisms

The Sunday Times has published a thoughtful piece on autism by Mark Henderson, entitled ‘We ask ourselves, can we separate Alex and autism?’ 

Alex is 12 years old and described as being “at the less extreme end of the autistic spectrum.” This was not always the case. He regressed when he was 14 months old, losing speech and becoming so withdrawn that nursery staff thought he was deaf. Reading his mother’s description of his early years Alex’s autism is plain to see. But he had to wait til he was 5 to get a diagnosis. Julia, his mum, would welcome improvements in genetic screening if it meant that children like Alex did not have to wait so long for a diagnosis but some of her worries chime with those raised by Dr Russell that are discussed on my previous blog.

“It took an age to get Alex the help he needed,” she said. “The earlier you know, the better, and if this could help us identify autism as young as possible it would be wonderful.

“But I would not want a situation like Down’s syndrome, where you tell parents while the child’s in the womb and you have to make a decision.

“We also ask ourselves how much of Alex’s personality is Alex, and how much is the autism. Can we even separate the two?

“If you asked us could we have prevented it, we would have to think. Obviously in some ways it would be better for him, but he is happy in himself.”

Questions like these are bound to come up more often as advances in genetic research offer the prospect of earlier diagnosis and even the possibility of prevention or cure. Whether or not these possibilities ever materialize is not the point. But they are undoubtedly powerful levers for releasing the massive funds that genetic research consumes.

[NB. research costs may be massive in relation to the biological sciences. But they are still small by comparison to the costs incurred in particle physics.  The Large Hadron Collider at Cern is costing in excess of 4 thousand million USD. Michael Wigler at Cold Springs Harbor has a budget of 14 million USD for his research programme into autism.]

The hype that surrounds genetic research is often encouraged by scientists eager to claim their portion of the research pie. This makes it even more important that journalists approach the topic dispassionately and are sensible to the dangers that Dr Russell raised in her article for Communication.

So it was a pity to read Mark Henderson’s latest offering in the Times, Hunting the gene that traps children in their own world which proclaims that

Parents and scientists are hoping that a new detailed analysis based on human genome will bring a big breakthrough within a year.

in the space of 4 paragraphs we get the following [emphasis added]

one of the most controversial and feared medical diagnoses of modern times

but it prompted thousands of parents to agonise over the cruel condition that seems to leave children walled off in a social and emotional world of their own, apparently beyond their love.

A disorder that was once rare has become alarmingly common,

the condition retains a brutal mystery.

This is exactly the sort of language that fuels fears about autism. It suggests that research into the prevention and cure of autism is almost an obligation. Those of us who argue for autism acceptance are accused of wishing a nightmare disorder on children. But children like Alex know happiness. They are not beyond love. They have a future. Or at least they might have a future if they are seen as people who can prosper with help and understanding, rather than the victims of a brutal mystery, at best to pitied, at worst to be feared.

All this is merely the preamble to a story about some research that is not even finished yet!

Within the next year a new study is expected to identify many of the genes that underlie autism for the first time.

I am always suspicious of claims made for a study that is still in progress. This is hype. And we have heard it many times before.  My thanks to Michelle Dawson for reminding me that in February, 2004  Thomas Insel of the NIMH said this about autism in the New York Times

“My sense is that we are close to the tipping point in this illness, and that over the next couple of years we will have, not all of the genes, but many of the genes that contribute.”

Funnily enough, we are at the same tipping point three and a half years later.

The medics tell me we are at a tipping point,” said Dame Stephanie Shirley, the millionaire computer entrepreneur and philanthropist, who is the chairman of the research charity Autism Speaks and the mother of an autistic son.

My guess is that researchers always feel as though they are on the brink of a fantastic new discovery. That is what sustains them through the painstaking daily grind at the lab bench or crunching data in front of a computer screen.  But the rest of us would rather wait for the results before we get too excited.

The article ends with another quote from Dame Shirley.

“It is quite possible that in five to ten years, we will have a real understanding of this disorder,” she said. “That’s a timescale that means today’s children may be helped.”  

I am sure that Dame Shirley is already doing a lot to help her autistic son. But genetics is the science de jour. There is a popular belief that all behaviour is the product of specific brain areas that in turn are the product of the DNA code carried in our genes. Unlock the genetic code that governs our brains and we can manage our minds. We have been here before.

Once upon a time psychoanalysis was supposed to have all the answers. It gave way to behavioural science. New brain scanning technology marked the rise of cognitive neuroscience. Genetics is currently in the ascendency. Will it prove more productive than previous paradigms or do we need a new way of trying to grasp the reality of what it means to be human, maybe one that includes autism rather than trying to eliminate it? It is significant that all the genetic research so far has tried to identify genes associated with the deficits and impairments associated with autism. Nobody to my knowledge is trying to identify the genes responsible for the autistic strengths identified by researchers like Mottron and Gernsbacher.

I do not have a crystal ball. For what it is worth, in my opinion genetic research will expand our knowledge and our understanding. But it will not lead to any sort of a cure or an end to autism. Given our current level of knowledge that is probably for the best.

‘It is not a disease, it is a way of life’

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This article is in today’s Guardian. guardian-story.jpgguardian-story.jpgguardian-story.jpg

It provides a useful introduction to the positions of some of the supporters of autism acceptance, including myself and fellow bloggers Kev Leitch and Larry Arnold.

The article begins:

Today, an event run by and for autistic people kicks off in Somerset, the latest act of a burgeoning autism rights movement. Emine Saner reports on the campaign to celebrate difference, rather than cure it.

It contains some really good insights from the people she interviewed. For example, Gareth Nelson (pictured above) of Aspies for Freedom says:

I don’t think you should cure something that isn’t purely negative, It’s the same as black people, who seem to be more at risk of sickle cell disease than white people but you’re not going to attempt to cure ‘blackness’ to cure sickle cell.

The only unfortunate thing about the article is that it does play up the role of Aspies for Freedom (AFF) at the expense of other initiatives. I was surprised to read that:

Nelson, with his wife Amy, who also has AS, is leading the UK’s autism rights movement.

And I am not convinced that AFF has 20000 members when the discussion forum on their webite has less than 6000 members and many of those are from overseas. This is unfortunate as one of the strengths of the emergent movement for autism rights and acceptance for autistic people is that there are many voices and all are free to explore important differences as well as points of agreement. As an example, Larry Arnold and I work together within the structures of the NAS and are in broad agreement on many issues. But we differ sharply in our attitude to the role of scientific research in autism.

I would also have liked to read more about Autscape. This event is unique in Europe. It takes its inspiration from a similar event in America called Autreat. Like the AFF, Autscape began three years ago but it makes no leadership claims. Instead it aims to:

  • Serve as a haven created by autistic people. An autistic space.
  • Provide a venue where the majority of speakers will be autistic.
  • Create possibilities within the conference for autistic people to communicate and socialise with other autistic people on their own terms.
  • Educate and inform on issues arising from within the autistic community.
  • Advocacy and self-advocacy.
  • Promote acceptance of autistic people in their own environments.
  • Enhance the lives of autistic people through empowerment, advocacy, and a nice relaxing time.

But these minor criticisms should not detract from a very valuable article in which the author shows respect for autistic people and accurately reports their views.

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When your normalcy gets too big.

NTs who struggle with theory of mind.

Last week I spent a very pleasant and productive two days attending a conference organized by Autism West Midlands and the Autism Awareness Centre. It was very well organized and the content was both interesting and practical. I also had the pleasure of meeting Maureen Bennie, one of the organizers, whom readers may remember from an earlier blog post of mine. My only regret was that I had to leave early to catch my train and so missed the closing presentation, “Understanding My Autism” by John Simpson. 

The headline speaker was Temple Grandin. Having read her books and heard her speak before, I found little that was new in  her presentation. She did make it abundantly clear that she struggled with abstract concepts and had to be able to associate them with visual images or concrete examples. But during questions a few people seemed unble to grasp this and asked questions in very general terms. When Temple asked them to be more specific they continued to speak in generalities.

So much for our neurotypical talent for empathy and theory of mind. It seems to me that we sometimes assume that others share our point of view rather than actually try to see things through their eyes. And when they do not share our point of view we sometimes feel threatened. I have even had one parent ask why I was trying to harm her children because I was critical of chelation! In my mind empathy is about being able to identify with the other and accept difference. Expecting everyone to  share your viewpoint may work most of the time, but it seems less like EMpathy and more like MEpathy to me.

REsearch or MEsearch

To return to the conference, the bulk of the presentations were by Kari Dunn Buron. She has written a booklet, originally titled “When my autism gets too big,” which has been retitled for marketing reasons as “When my worries get too big,” and “The Incredible 5-Point Scale.” I have already found them useful, both for helping students  to identify their emotions and to manage their behaviour, and for helping staff to reframe their attitudes and responses to student behaviour.

At one point during her presentations Kari described how she had organized a year’s sabbatical to visit experts in the various disciplines that were relevant to her work with autistic children and teens. Many of them were totally unfamiliar with each other’s research. For example Nowicki and Duke coined the word dyssemia for the nonverbal social communication deficit described in their book, Helping the Child Who Doesn’t Fit In.  Their Dyssemia Rating Scale describes a lot of the difficulties experienced by autistics. But these guidelines were developed at a time when autism was generally associated with mental retardation. Their first book was published two years before Asperger Disorder was added to the DSM-IV. A child who, inter alia, was often described by other children as dumb, but usually is average or above average in intelligence had a better chance of being identified as dyssemic than autistic, if they were identified at all. Nowicki and Duke closed down their website, Dyssemia Inc in 2006, perhaps after they learned about Asperger Syndrome from Kari Dunn Buron?

From Theory to Practice

Kari also quoted Ami Klin as saying that in autism, educational practice lags behind research by 20 years. I took this as a reference to the dominance of ABA in North America and a hint that it was based on outdated research. But I could be wrong. Kari’s basic message was that

Autism is a disorder of social cognition and problems of social understanding can cause social anxiety which can lead to challenging behaviour.

As a consequence, instead of directly addressing the behaviour, Kari suggests we teach our students skills to help identify and manage their stress by making wise choices. But we cannot expect our students to do that unless we as parents and educators also make wise choices.

The Unwise Choice

“That is wrong! He has to stop! It is my job to make him stop!” This leads to confrontation; time spent in crisis; negative routines. If you are successful the person is controlled but at what cost to him and to you?

The Wise Choice

“Well. that was uncomfortable. He could learn another way. It is my job to teach him.” This leads to teaching time devoted to learning positive routines. The person is empowered and we all do a lot better.

This is cribbed wholesale from one of Kari’s conference handouts.  I like it because Kari is asking us to do exactly what we expect of our students  - to reflect upon  the situation and weigh up our options before we act. We do not always manage it, despite all our advantages in social cognition. Yet we expect our students to do it. This brings me back to the start of the conference when some of Temple’s interlocutor’s failed to understand her but still expected her to read their minds.

I am sure I have made similar mistakes in the past and I expect to make mistakes in the future. Kari enjoins us to learn from our mistakes, to regard problematic behaviour as evidence of a learning difficulty and to use autistic strengths to correct it. While I found Kari’s overall message positive and helpful and respectful of autistic people, I wonder if, from the autistic side, it appears that we NTs are the ones with a disorder of social cognition when it comes to understanding them. Perhaps someone should write a booklet for us, “When my normalcy gets too big,” and give us a 5 point scale.

Blogging about Thinking

Kev just nominated me for a Thinking Blogger award.

The official rules for participation in the Thinking Blogger Awards meme are as follows:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to this post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the ‘Thinking Blogger Award’ with a link to the post that you wrote.

thinking blog

Ilker Yoldas, the originator of this meme, also enjoins us to “Please, remember to tag blogs with real merits, i.e. relative content, and above all – blogs that really get you thinking!” Apart from feeling a buzz because Kev has nominated me in this category, I also feel obliged to choose carefully. This may be a bit of fun. But it is serious fun. It gives me an excuse to think about the themes that have informed this blog since its inception in November 2005.

  • Debunking autism quackery and exposing its exploitation of parents’ fears.
    • This is really about exposing bad science and Ben Goldacre’s weekly BadScience column in the Guardian, also published as a blog, does this and so much more. He has taken down the Geiers, Wakefield, and their media friends like Melanie Phillips. http://www.badscience.net/
  • Championing real parental concerns for their children because when these concerns are dismissed by mainstream practitioners it drives parents into the hands of the purveyors of autism quackery.
  • Educating the professionals about the reality of autism because up to date knowledge is making existing practise redundant.
    • Michelle Dawson is a remarkable autistic adult whose collaborations with Profesor Mottron in Canada and  Professor Gernsbacher in the USA have done a lot to forward this aim. http://autismcrisis.blogspot.com
  • Arguing for neurodiversity and autism acceptance because they can provide the basis for a positive intervention in the lives of of autistic people.
  • Recognizing that within science there are legitimate differences and disputes. We can be on different sides while exercising mutual respect.
    • I would recommend a website but I have already exhausted my quota. Maybe next weekend I will find time to blog about this question exclusively. It does seem to me to be of the utmost importance that, as the cultish believers in anti=science sink into obsurity, we successfully engage with the intellectually valid disputes within the life sciences in which we find giants like Pinker against Rose and, if he had not died before his time from cancer, Gould against Dawkins. Arguments about genetic determinism and autopoeisis go to the heart of the disputes within the autism community about the consequences of seeking a cure versus the potential benefits of respect for the condition of autism.

Disablism and autism

April was Autism Awareness Month in the USA. Its ending coincides with Blogging Against Disablism Day, May 1st. On this day we are invited to write on any subject, specific or general, personal, social or political, anything which states an objection to the differential treatment of disabled people.

So I thought I would write about the misrepresentation of autism in the media. There was  a lot of that last month. There were attempts to link autism to the tragedy at Virginia Tech. There were misleading press reports in the UK that ABA had doubled the IQ of autistic children. I could have selected any of the media coverage of an “autism epidemic” caused by exposure to environmental toxins, vaccines. Then there are all the articles which refer to autism as “this devastating disease.”

Instead I have chosen to focus on an article that does not contain a single mention of the words disease, epidemic, vaccines, mercury or cure. On the face of it this article is on our side. The take home message is that autism is a spectrum disorder with a massive range of abilities as well as disabilities. Instead of trying to cure them we can help autistic children by adapting our behaviour to meet their needs, especially their need to be able to reliably predict what is going to happen next. Quality education delivered by professionals who understand autism is the key to success. Multi-disciplinary diagnostic teams are necessary to make sure that autism is not missed or misdiagnosed as ADHD, OCD etc.

The problem is that it is easy to spot disablist thinking in the blatantly discriminatory articles. But the effect can be just as damaging in ostensibly sympathetic articles like this. Sometimes it can be more damaging because we are so relieved to read an article that appears to be on our side that we do not notice its implicit acceptance of many of the stereotypes that we are up against.

This is what I mean.

Last year, the department’s statistics showed 1,036 autism-afflicted students on file, said Susan Constable, director of the Autism Support Center for the department

Just as gay students are not afflicted with gayness, autistic students are not afflicted with autism. It is not something external to their lives. It is integral to who they are.

“Autism is no longer a low-incidence disorder in Rhode Island or nationally,” said Constable.

No longer? This suggests that, in line with the views of advocates of an autism epidemic, autism is on the increase. But the speaker falls into the trap of equating administrative incidence with actual incidence. The truth is that we do not know if autism has increased. We do know that about the time that US school districts were told to start recording autism the diagnostic criteria were broadened and trying to compare figures then and now is like trying to compare apples with oranges.

 Statistics indicate that more children will be diagnosed with autism this year than with AIDS, diabetes and cancer combined, according to the Autism Society of America. If diagnosis continues at this rate, the society estimates that autism could touch 4 million young people in the next decade.

The article states that the best treatment for autism is education.But it is the comparison with AIDS and cancer that will stay in the reader’s mind. The common cold is more common than AIDS, diabetes and cancer combined. But nobody ever compares the incidence of the common cold to cancer. By doing so with autism you inevitably suggest that the two are comparable qualitatively as well as quantitatively. 

Many teachers know they’ve had little or no training, but will still need to reach children with autism, Constable said.

Reach children with autism? This reflects the idea that autistic children are somehow cut off or unreachable. We return to this alien affliction of autism that stands between us and the child. So what is this training for? To understand the child and reach out to them on their own terms or to tear down the barrier of autism and rescue the child within?

These are all comon sense errors. You accept the common sense assumptions that dominate society rather than subject them to critical analysis. But once you do this you can easily slip into factual errors.

“Regressive is the type of autistic child that we are seeing really increase,” Constable said. “We know that there is a definite genetic link to autism because we see families who have two or more children with autism, but the numbers are growing too fast for this to be just genetic. There are definitely some environmental contributions that play a part in it but there have been no conclusive studies as to what those areas are.”

The erroneous assumption that an increase in  recorded cases equates to an increase in actual cases is repeated. Genetic autism is taken to mean identifiable from birth and is counterposed to regressive autism which is assumed to have an environmental cause and therefore environmental insult must account for the increase in numbers. In fact there is no evidence that regressive autism has increased. Nor is there any evidence to suggest that regressive autism is triggered by an environmental insult. There are many late onset disorders that are probably genetic in origin. Alzheimers is probably the most dramatic illustration of this.

And this is the point. Adopting faulty premises leads to faulty conclusions and the acceptance of unproven hypotheses as facts. Even the most well intentioned people can end up repeating damaging ideas as facts if they lack a theoretical framework that alerts them to this possibility.

So how did we get here? It is simple. A loud and unrepresentative minority have been capturing media attention and helping to set the agenda. It is time for a loud and representative majority to restore the balance.

Language, culture and autism

Mike Danatos left this interesting comment on one of my pages. I decided to blog it because it deserves a wider circulation.

I am currently a Grad Student in an ABA program at Rutgers University. I am interested in pursuing doctoral research on autism. My review of the current understanding of autism depicts a clearly Anglo-centric view derived from research and interventions that have historically been based in either the United States or Western Europe.

Two of the DSM-IV criteria (social, language) are likely to evidence significant variability in the non-Anglo world. Uta Frith reports in her research that it is not surprising that children with autism “confuse deictic terms and even personal pronouns.” Does this observation apply only to children whose ‘natural’ language is English? Does the confusion change with an arguably more complex language such as Portuguese?

A genetic study of autism in Costa Rica reported that one of the major hurdles to overcome was that the standard research instruments (ADI-R, and ADOS) were only available in English and were unlikely to be translated by the intellectual property owners because of a perceived lack of market to repay their investment. A similar problem exists for IQ tests where no norms exist for Latin American countries.

An unprecedented amount of money has been spent in the last decade on Anglo-centric autism research including more than $100 million in 2006. A new study to understand autism in the non-Anglo world has recently begun yet the research is limited to countries on the Asian continent. There is currently a dearth of research on autism from a Latin American perspective and this is a huge gap in knowledge.

The importance of this gap can be brought into clearer focus by consideration of the tens of billions of dollars that are spent in the US annually on ‘special education’, the increasing proportion of students from Hispanic origins in the public school system and the unfortunate prevalence of significant misdiagnosis of special education needs of minority students.

I would be very interested in hearing thoughts, opinions, diatribes, etc on this issue.

So would I.  Is there any research into how different mother tongues might affect the presentation of the language difficulties in autism? As an example, I do not know if such a language exists, but you could not have pronoun reversal in a language that had no personal pronouns.Social and cultural aspects of autism including, but not restricted to language differences, are potentially as important as the genetic and medical aspects that get most of the attention. Roy Grinker, in his new book, Unstrange Minds, looks at autism as a world wide phenomena and includes an extensive section on Korea, where Reactive Affective Disorder, which is essentially blamed on bad parenting, is actually preferred as a diagnosis over autism. An interview with the Guardian reported that,

In such a setting, reactive attachment disorder is a popular diagnosis, Grinker believes, because the condition simply blames the mother: That’s the more culturally appropriate diagnosis, you see, because it means there’s just this one person – the mother – who’s to blame.”

The alternative, to admit to a genetic element, would bring shame on all the family. This may be a factor affecting the perception of autism in other communities were family traditions are strong and women traditionally have a subordinate role. This excerpt from Roy Grinker’s website shows how serious the problem is. And also how things are changing for he better.

Milal School. This is a wonderful school for children with autism called Milal School in an area of Seoul called Ilwon-dong. For me, it is a symbol of how things are changing for the better in Korea. When it was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism. Today, the Milal school is a jewel in the Ilwon-dong neighborhood where hundreds of neighbors volunteer. The architect was given an award for the building. And the gym is used for community events, such as concerts and church services. In the afternoon, when school lets out, families come by to pick up their children and sometimes take a leisurely walk in the neighborhood, for all to see. 

Cultural differences may be a factor in other aspects of autism research. When I attended the NAS International Conference in London two years ago a delegate from South Africa pointed out that nearly all of the genetic research was based on North American and European data with virtually no input from the southern hemisphere.

More recently, supporters of the link between vaccines and autism have tried to cast doubts on the validity of research by Eric Fombonne that demonstrated no connection between MMR and autism. They did this because he combined data on autism from anglophone districts of Canada with data on vaccines from francophone districts. There is a full discussion of the critique of Fombonne’s study at Interverbal; Reviews of Autism Statements and Research.

While it is extremely unlikely that language differences affect reactions to the MMR vaccine could cultural differences impact upon the diagnosis levels in francophone and anglophone parts of Canada? This is not an idle question. Autisme Europe won a case against France before the European Commitee of Social Rights in Strasbourg, in part because the cultural dominance of psychodynamic theory in France was instrumental in denying French autistic children an appropriate education. Could such a bias affect francophone communities around the world? It is worth noting that Fombonne is a French psychiatrist who does not adhere to psychodynamic theories of autism.

So, thank you, Michael Danatos. Your question raises all sorts of interesting possibilities.