The trend for more kids to have autism makes the society worry if this is a new threat to the health of the young nation coming with it.

Surely autism is not something that was noticed just a while ago, many parents are trying to focus public's attention on this problem and demand from the scientific society to find explanations and solutions to this problem. As any big problem autism created many trends in explaining the problem and its reasons.

For example, ultra sound diagnosis at early stages of pregnancy are rumored to create a possible effect of autism on the kids. Gender "curse" as out of 5 kids diagnozed autism statistically there are 4 boys and 1 girl, and so on and so forth. Add to this cases when some kids have been thought to be autistic, whereas in reality they just head the hearing problems and could not interact socially.

These informational puzzles create a real mess in the heads of people instead of showing them the way out.

To clear the picture and shift away the scary stigma from autism. Let's have a look at 3 major theories that try to explain autism.

Theory of Mind

Within the framework of this theory every human being is capable of understanding what thoughts or ideas trigger people to do some actions. This gives us a pocibility to "foresee" these actions and act adequately. For example, you are at the cross roads waiting for the greet traffic light, you know that a person next to you is standing and also waiting for the same light to cross the street. Hence, you can "foresee" that when the light is green, he or she will start crossing the street. No big magic. But having that in mind you would not put let's say a suitcase right in front of this person, because you know that when the light gets green he/she will go forward and will need to step over it.

Still, let's be frank - we can only suppose that we know what is inside the mind of another person, based on our experience and logics. In reality the mind of another person is a black box for us.

Autistic people cannot make predictions of what another person will do in standard situations. This makes them not well adopted to many routine situations in life. But still, maybe they are not that incorrect being unable to foresee the actions of other people?

Executive Function

Whenever we do something routine, we are a little above the thing. We see our actions as the line of things to do that will give us some results. Autistic children tend to get dissolved in the process - they just do and do and do and this doing become everything for them. Perhaps, it is possible to say that they do just for doing instead of trying to find sense why they are doing so.

That is why a typical picture of a kid with autism is a kid that "got stuck" on the same action - line of toys, one and the same symbol on the paper, etc.

But then let's put up a question to ourselves. Are we really better because we do something for a purpose? No. We are just different. Which makes the issue of standards pretty lame with autism.

Central Coherence

We see ourself as part of the bigger picture: I go to the office because I need to do a job because I need money because I need to have food, clothes and place to live, because, because, because. Once again, we can say that people who do not have autism can for a split of a second get above the situation like they show in the movies of zooming out picture and end up with the whole globe seen from the satellite.

Kids with autism do not do like this. They are living exactly in this very moment. Yes type of living causes them many problems in our society where we expect others to understand what is going on.

Summary.

The idea behind this post was simple. Try to show how different theories understand autism and show that autism is an issue of other standards of social behavior - different from our. But as you can see, even logically we can make a conslusion - autism is not a stigma, they are not stupid of absent minded. They are just different in some issues.

Maybe this is the key to the problem?

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For more information about autism please consult autism informational portal or grab this autism RSS feed.

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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.

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)

"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.

 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.

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.

This article is in today's Guardian.

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.

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.

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.

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.
  • Sharon is one among many parents who writes honestly and thought provokingly about raising an autistic child. http://thefamilyvoyage.blogspot.com/
• 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.
  • Probably http://ballastexistenz.autistics.org/ But as she may not wish to be tagged I offer The Joy of Autism as an alternative. Both challenge existing preconceptions about autism.
• 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.

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.

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,

Regular readers of Michelle Dawson's blog [and, if you are not a regular reader, I commend it to you] will be aware that the major autism societies in Canada are fervent believers in the ability of intensive behavioural intervention, by which the mean the applied behaviour analysis of Ivor Lovaas,  to normalize the behaviour of autistic children. They are persistent in their attempts to make such treatment mandatory for all autistic children and are not above using misinformation to win their case.  

These self appointed 'autism advocates' argue that unless autistic children receive IBI/ABA in the early years they will be unable to learn and will face a lifetime of institutional care. Like the mercury malicia in the USA they sieze upon headline figures for autism prevalence and suggest that all of these are victims of an epidemic that robs children of their humanity and condemns them to live out a worthless existence unless they can be recovered. They ignore the existence of Canada's autistic adults and when adults like Michelle Dawson challenge them and speak out for recognition and acceptance, she is vilified.

So I was pleased to read today of this research project in Canada

Researchers from the University of Calgary, University of Manitoba and University of Saskatchewan are looking to shed some light on the often-misunderstood world of autism.The group of professors and students from the division of applied psychology are conducting a study that focuses on 100 youth aged 17-21 diagnosed with high-functioning autism, or Asperger's syndrome. The study is designed to look at the under-studied adolescent demographic and assess the positive aspects of these points in the autism spectrum.

Positive aspects of autism? what will Canada's 'autism advocates' have to say about that? When they publish their results,

the team hopes to dispel some of the stereotypes in mainstream media and pop culture.

Many of these stereotypes are being reinforced all the time by the propaganda coming from the mainstream autism societies. It is good to see that while they may be setting the political agenda regarding autism in Canada, there is still an independent tradition of enquiry amongst Canadian academe.

THE AUTISM ACCEPTANCE PROJECT

This is as good a time as any to remind people of The Autism Acceptance Project, [TAAP] which is also based in Canada. The website has just had a makeover and carries the inspiring title, "Tapping into Human Potential and Dignity." and remember to add TAAP founder Estee Klar Wolfond's blog to your feed along with Michelle Dawson's.

6th INTERNATIONAL MEETING FOR AUTISM RESEARCH [IMFAR]  

Michelle Dawson is not only a campaigner for the rights of autistic people. She is also a researcher and will feature at IMFAR this year with one oral and two poster presentations. You can read the abstracts on Michelle's blog:

THE AUTISM AWARENESS CENTRE

I know very little about Maureen Bennie, except that she is the driving force behind the Autism Awareness Centre,

Canada's National Provider of ASD Conferences

Leading the Way for Change!

She is also a parent of two autistic children and is running home programmes of Intensive Behavioural Intervention with both of them. I checked out the website because I am going to one of their conferences in the UK this year. I was pleasantly surprised. Maureen reviews a lot of books on the website and has some positive things to say about autism.

How To Understand Autism the Easy Way requires a beginning-to-end read because all of the chapters hinge on the first chapter's explanation of social and computer thinking. The author does a beautiful job of explaining what it is like to autistic through the concept of social and computer thinking. The writing resonates respect and a positive outlook on this disorder. It is clear that Alex Durig feels a sense of awe about these individuals. The reader will feel this awe and develop a new awareness of autistic perception not explored in other books. [How to Understand Autism - The Easy Way by Alex Durig]

Norm Ledgin successfully puts to rest the negative connotations an Asperger’s diagnosis usually has. He’s devoted his literary energy into seeing the positive aspects of Asperger’s Syndrome. Society generally looks upon people with different or unusual traits as abnormal, but Ledgin sees the Asperger’s traits as great gifts. He uses famous role models to emphasize the point of what these unusual traits have contributed to society and have made us richer for it. [Asperger's and Self-Esteem: Insight and Hope by Norm Ledgin]

Readers can empathize and smile at the joys of life this young man has experienced in his short lifetime. You will realize autism does not have to be a deficit but a different way in which to view the world. [The Mind Tree by Tito Rajarshi Mukhopadhyay ]

I have no wish to minimize the serious problems that advocates for autism acceptance and understanding face in Canada. But, as Ian Dury reminds us, there are reasons to be cheerful.

Now that there is a real possibility of a cure for Rett Syndrome some time in the future, will it undermine the movement for autism acceptance and encourage those whose aim is normalization? Some will certainly see it that way. But in the short to medium term I predict that it will increase the tension between organizations like Autism Speaks that are funding research into genetic causes for autism and those like NAA and Safe Minds who think they already know the cause and the cure and are only interested in research that confirms their prejudices. 

Well, it has happened. J. B. Handley, the driving force behind Generation Rescue and Put Children First, is circulating a letter entitled Bernie versus Bryna: The Trouble with Autism Speaks 

Bernie refers to Bernard Rimland, the recently deceased founder of the Autism Research Institute [ARI] and Defeat Autism Now! [DAN] Rimland has done more than anyone to promote the idea that autism can be treated with alternative therapies like megadoses of vitamns, special diets and chelation for heavy metal poisoning. Bryna refers to Bryna Siegel who wrote The World of the Autistic Child and is very much in the autism mainstream.  Handley is upset because Autism Speaks is sponsoring a conference hosted by Jump Start in San Francisco this Friday [March 9th] at which Siegel is the keynote speaker. This is why.

Bryna Siegel diagnosed my son. My son was the first client of "JumpStart" when it was still a part of UCSF and just in its infancy. Bryna Siegel told us that the GFCF diet was a "placebo for parents." She has testified in court for vaccine manufacturers to ward of Thimerosal lawsuits (something she does not disclose to you while telling you the vaccine-autism link has been disproven.) She thinks the Danish studies thoroughly refute the Thimerosal-autism hypothesis. She told us our son had no "theory of mind" and that he'd probably never talk.

A parent who attends this workshop and asks a question about biomedical treatment will be told by an "expert" that biomedical treatment does not work. I should know, that's what she said to me and my wife.

And, that's my point about Autism Speaks: way too much Bryna and not enough Bernie.

Handley believes that there is an autism epidemic caused by mercury in vaccines. He believes in special diets, supplements and chelation therapy. He is using them to try and cure his son. He is mad at Autism Speaks founders Bob and Suzanne Wright because they have not publicly embraced and endorsed DAN and ARI. He finds this particularly galling because their autistic grandson is being treated by a DAN practitioner.  

But that is not the whole story. The Autism Society of America [ASA] and ARI announced a research partnership in October last year. But Rimland died shortly afterwards and there is little evidence on either organization's website of progress in this area. At the same time Autism Speaks has been making real headway. Its video, Autism Every Day, received widespread coverage, including a showing at the Sun Dance Festival and was heavily promoted among politicians in the run up to approval for the Combatting Autism Act. Autism Speaks marked the anniversary of its successful merger with the National Association for Autism Research [NAAR] in February by finalising a merger with Cure Autism Now. [CAN] Autism Speaks was quick to announce its role (courtesy of CAN) in the recent widely publicized report of the Autism Genome Project. Autism Speaks has also established itself in the UK and in Canada. While its US website still affirms its commitment to

funding global biomedical research into the causes, prevention, treatments, and cure for autism.

the UK website has a much more inclusive statement that avoids mentioning cures. 

Autism Speaks is a registered charity that raises funds to accelerate biomedical research to determine and understand the causes and biological basis of autism spectrum disorders; and through that understanding to discover and promote new ways of improving the quality of life for all those affected.

This is part of an inevitable process of accommodation. Autism Speaks has an ambition

to become a worldwide organisation by developing communication, organisational and fundraising models that encourage funders, researchers and those affected by autism to work collaboratively across geographies to ensure that the needs and priorities of each are met.

Collaboration means compromise. Working in the mainstream means that you adapt to the consensus. In the UK the consensus is more congenial to autism acceptance than it is in the USA.  So Autism Speaks has adapted. Some advocates for neurodiversity remain deeply suspicious. I tend towards a cautious and watchful acceptance of their good faith, in the UK at least. Handley, on the other hand, is outraged because he suspects that Autism Speaks are going to drop their support for biomedical interventions to cure autism and accept that autism is more genetic than environmental. These are his complaints against Autism Speaks.

1.      You do not mention DAN! or biomedical treatment on your website, and you have no link to DAN! or ARI or any of the groups on our side of the fence.
2.      When you eulogized Bernie Rimland on your website, which would cause him to roll-over in his grave I am certain, you did not even mention biomedical treatment or recovered children, this is a glaring, glaring omission that speaks volumes about the mindset of the people running your organization.
3.      Your scientific advisory board is populated with some of our world's worst enemies, including some who have stated on the record that there is no autism epidemic. And, your research choices support this. (The only environmental research you can claim to have sponsored deals with prenatal insults with the notable – and commendable – exception of Richard Deth).
4.      When I met with AS in the Fall, I asked a simple question: "Are you sending anyone from your organization to the DAN! Conference?" After some silence and stumbles, everyone turned to Andy Shih and his answer was basically "No." The only person in the room more annoyed with this answer than myself was Katie Wright.
5.      None of the research ideas presented to you by Laura and Lyn have received further study or consideration, as far as I know.
6.      Kevin Barry, our former President, was hired by Autism Speaks. On his first day of employment, Mark Roithmayr informed Kevin that he was only there "as a favor to Katie" [ the mother of Bob and Suzanne Wright's autistic grandson]
7.      You succeeded in completing alienating Deirdre and Don Imus, our community's most important public advocates.
8.      The clarification by Alison Singer regarding her unambiguous statement to the Wall Street Journal only further clarified how far Autism Speaks is from the environmental camp. I'm pretty sure we are soon going to see funding to try to unravel the "genetic epidemic" we are experiencing.

I will not go into all these points right now. I expect other Autism Hub bloggers will have something to say about this. Handley ends by giving the email addresses of some  Autism Speaks luminaries for you to complain to. If they have managed to annoy Handley so much I suggest that congratulations and encouragement to do more of the same are in order.

Mark Roithmayr: mroithmayr@autismspeaks.org

Bob Wright: Bob.Wright@nbcuni.com

Suzanne Wright: suzanne.wright@nbcuni.com
With extreme annoyance and frustration,

JB Handley

It could be, JB, that you might be wrong. Just something to think about.

This must have cost her a lot in terms of nervous energy and sensory overload. Thank you again, Amanda for sacrificing your time and energy and privacy. And for anyone else reading this, please show your appreciation by following these links.

Amanda's blog [Be aware that all the media attention has been very stressful and Amanda may be taking  break for now.]

New Scientist

Amanda's video, "In my language"

Amanda on CNN

Amanda's guest blog on Anderson Cooper 360

And do visit Autism Diva's commentary as well.

1. It is far more common in girls than in boys.
2. We know what causes it - a mutation of the gene MECP2 on the X-chromosome.

Because it is genetic, Rett parents have not been chasing cures like some autism parents. This has made Rett syndrome a relatively quack free zone, so far. On Thursday a team of researchers led by Dr. Bird of the University of Edinburgh announced that they had successfully activated the MECP2 gene in mice using Tamoxifen and that this had led to a reversal of Rett like symptoms and an improvement in brain function. Kev and Kassiane have both blogged their concerns that the purveyors of autism quackery will try to exploit this and I share their concerns. Fortunately Dr. Bird is not only a very good scientist. He is also an able communicator. The Rett Syndrome Research Foundation have published a video of Dr. Bird talking about this research in which he says, 

Tamoxifen only works in this context because the mice have been set up to respond to it by activating the MECP2 gene. But in order to get them to do that it was necessary to alter the struture of the gene in specific ways. It would have absolutely no effect in humans.

So, why all the fuss?

Firstly, this confirms the work of Dr. Huda Zoghbi who discovered the link between MECP2 and Rett Syndrome in 1999. I find this particularly satisfying because it was Dr. Bird who discovered the MECP2 gene in 1990. More importantly it suggests that if scientists can find out how to correct the mutation in the MECP2 gene in humans it may be possible to reverse the symptoms of Rett Syndrome. Girls have two copies of the X-chromosome, one from each parent. Research suggests that most of the mutations are inherited from the father. If scientists could find a way to inactivate the chromosome carrying the mutated gene and activate the normal back up would it work like the mouse experiment? That is the hope and the expectation expressed by Dr. Bird. It is still a long way off. The paper concludes that

The experiments do not suggest an immediate therapeutic approach to RTT, but they establish the principle of reversability in a mouse model and therefore raise the possibility  that neurological defects seen in this and related human disorders are not irrevocable.

Autism Acceptance and Neurodiversity

Rett parents have long practised acceptance out of necessity and got on with the job of seeking those treatments and therapies that help their children. In the broader autism movement there have been similar arguments from necessity. Time spent seeking a non-existent cure is lost time. It is much better to get on with the job of relating to your autistic child and finding ways to help them. The quest for a normal child can impede that relationship and the child may feel your disappointment and be affected by it. The most terrible thing my son ever said to me was, "I wish I could have been the little boy you never had." There is every possibility that non-verbal, apparently low functioning autistic children may harbour similar thoughts. So autism acceptance may be therapeutic, both for children and their caregivers

There are also arguments from diversity. These have arisen from within the autistic community, based on the concept of neurodiversity. Autism is seen, not as a defective way of being, but as a different way of being. There are autistic strengths as well as weaknesses. But science continues to see autism purely in terms of deficit. We should seek to celebrate diversity instead of trying to stifle it.

Some would go further and argue that autism is neither a medical nor a scientific phenomenon. Rather it is a social construct with a history that is open to deconstruction and reinterpretation. Larry Arnold discusses these ideas on his blog, most recently in his entry Autism, it's not what you think, it's how you do.  

The ideas of neurodiversity speak to a wider audience than just parents. Though parents like myself have been persuaded by their arguments. Autistic adults are campaigning over human rights, not just for themselves but on behalf of autistics who are subject to questionable treatment in schools and institutions. Clinicians and researchers are being encouraged to move away from a disease model of autism and to start from a position of respect for the autistic condition. Autism organizations are being asked to take account of the opinions of autistic people and to include autistic people in their governing bodies. The National Autistic Society has made great strides in this respect. The page on their website entitled "Is there a cure?" begins with this quote from Joshua Muggleton, an autisic teen.

 "We are not born to suffer. We are born to thrive. If you live in a dry area and your garden receives little water, you plant plants which like dry soil. But when you are given a plant that likes wet soil, you don't kill it, you water it, you spend one of your 1440 minutes each day watering that plant. Because you know, that given the right care, that little bit of effort can produce spectacular blooms. And so it should be with children like us."

The page ends like this.

Although this page has been written primarily for the parents of newly-diagnosed children, it may be helpful to note the viewpoints of some adults with autistic spectrum disorders. There is a growing movement amongst autism activists who don't think in terms of 'curing' a 'disorder' but instead of celebrating difference. Please take time to read their viewpoints below.

It then links to stories about the Autistic Liberation Front, to Autistics.org, Neurodiversity.com and Don't Mourn For Us.  Whenever I get impatient with how slowly the NAS is moving I return to that page before turning to Michelle Dawson's blog that documents the uphill battle with Canadian autism advocates who see normalization as the only option for all autistics whether they want it or not.

Is our position under threat?

Now that there is a real possibility of a cure for Rett Syndrome some time in the future, will it undermine the movement for autism acceptance and encourage those whose aim is normalization? Some will certainly see it that way. But in the short to medium term I predict that it will increase the tension between organizations like Autism Speaks that are funding research into genetic causes for autism and those like NAA and Safe Minds who think they already know the cause and the cure and are only interested in research that confirms their prejudices. 

Neurodiversity has  nothing to fear from sound research like Dr Bird's. It helps to clarify our understanding of autism and adds to our understanding of neurology. Rett itself is a spectrum condition. Kerr et al  have identified both strengths and weaknesses in Rett Syndrome and discuss the complexity of the symptom mix. Rett Syndrome has always seemed a very atypical pervasive developmental disorder. Whereas most PDDs are diagnosed on the basis of behaviour, Rett has distinct physical symptoms. These can be very distressing and potentially life threatening. I see no contradiction between wanting to relieve those symptoms and valuing diversity.

Part of the problem is that a lot of our thinking about neurodiversity has been shaped by our opposition to those who have sought to demonize autism and to eradicate it by any means necessary. Autism Diva has compared their position with the more positive attitude of Rett parents prior to Dr Bird's research.  And now there is hope for a possible cure they are not crying out to Cure Rett's Now! In a video of parental responses one father expressed a hope that he might hear his daughter speak before he died, even if he had to wait until he was eighty.

Dr. Bird's research raises important questions about getting the balance right when discussing treatments and cures in the context of respect for neurodiversity. It is a challenge, not a threat, and one that I welcome.

"The third thing that I have noticed is how diverse the personalities of adults with Autism are. Abrasive, apologetic, sympathetic to others, self centred, shy, confident. Just like the rest of us, with strengths and weaknesses. Each personality emerges unique, often after immense struggles. And, when you read the life stories there is often very little clue in a person’s childhood about the way they will turn out.
One young woman with Autism described two children, identical in every respect. They have the same problems. They inhabit the same environment. But they react in different ways and their conditions are interpreted differently. One is labelled autistic, the other is gifted but odd. In other words, there is no point in trying to pick the winners or match services to projected outcomes. The only way to pick a winner is to back them all. "

I was quite pleased with this passage from my book when I wrote it back in 1998. Now I am not so sure. I thought I was advocating equal rights for all autistics but the justification for this was the questionable premise that this was the only way to discover all the gifted and talented autistics who would benefit society. Once we have identified the "winners" what happens to the "losers" after that?

That thought never occurred to me when I wrote the passage above. I was arguing for services for all autistic children and had not thought really about the situation for autistic adults apart from arguing that,

"any adult services that are put in place need long term planning and adult services do need to be put in place. As I mentioned earlier, parents should not be expected to assume the burden of adult care. And the more independence the adult with Autism can achieve the easier the transition that will have to be made after the parents have died."

In retrospect this looks quite horrible: glittering prizes for the few and the "burden" of community services for the rest, apart from those who will need even more burdensome insitutional care. That was not my conscious intention. I was writing from a parent's point of view, a poor put upon parent who was forced to fill the gaps in a creaking system that was failing to provide the services that I wanted to meet my agenda for my child. My agenda at that time was to teach my son how to please other people, fit in at school and stay out of trouble so he could join the priveleged few who made it through the system. It was only much later that I learned to listen to my son. As I pointed out in another book (Asperger Syndrome in Adolescence edited by Liane Holliday Willey, Jessica Kingsley Publishers 2003)

"The best advice that Mattie got was from Dave, a clinical psychologist, who asked him to think about what he wanted. Prior to this Mattie had always been encouraged " [by me as much as any teacher or other professional] "to meet other people’s demands and expectations. Dave was the first person to give Mattie permission to put his desires before our expectations."

So, if I am anything to go by, even well intentioned parents who think they respect autistic culture and have some understanding of autism can get it wrong. It is easy to beome entrenched in our thinking when taking up cudgels on behalf of our children. The danger is that we define our ideas in terms of what we are fighting against. But sometimes we need to reflect on and modify our thinking about what we are fighting for.