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Dr-David-Banner

Distortion Of Asperger (the aftermath)

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Dr-David-Banner

What sprang to mind today was the definition of the essence of Asperger Syndrome: helping those who can't cope with a neurotypical society. That's how it started with over 200 Austrian school kids who had to go to a special school. Yesterday I read an article by a blogger who raised the question: What would Hans Asperger have said had he known that his isolated research would have morphed into a whole social phenomenon by 2000? Personally, although social media awareness to the masses hasn't been totally negative, I feel I had been taken in by much of the glossy image of those few years. The first chinks in the armour came  about in a way that rattled my cage when UK Asperger patient Gary Mckinnon got into hot water. He had hacked into a NASA database in a bid to expose a UFO cover up. He was a fragile character and typically Aspergic. It would be fair to state his compulsive special interest in Ufology and software had totally over-come his reason, or full social awareness. What struck me as very odd was when psychologists pointed out Gary's Asperger diagnosis was a valid mitigating circumstance, they were shouted down on lots of the Aspie networking forums. Now, for me, although I figured Mckinnon had broken laws, I could understand the illogical drive of compulsive interests, typical in high autism. So, what shocked me was that scores of people on AS forums seemed clueless as to the overall picture. Indeed they were very vocal that AS cannot be a factor in such cases. I should point out that at that time on Asperclick, Mckinnon was defended by veteran members. People disapproved but partly related. So, you could say the seeds of doubt were sewn. Now I find many other people were experiencing the same doubts. Somehow a serious psychological/neurological disorder, equated by Asperger to psychopathy and schizophrenia, was being gradually morphed into a kind of neurodiverse society for the offbeat. As ever, much of the fault lies with Americanisation. I mean in the same way a gay person has to join semi-political rights causes and have a label. Did the ancient Greek, for example,have to tick boxes on forms to emphasise orientation?  So, America once again pounced on a new movement - neurodiversity. Thousands were diagnosed as autistic and even formed societies. I discovered Hans Asperger did accept that human beings do deviate from the neurotypical standard but really his primary objective was to help shipwrecked kids. These were kids that tripped over, scrawled on paper, rocked, mumbled and stared into space. It wasn't diagnosis for the sake of a definition but a need to solve major developmental problems. Some people are now saying a decision was taken not long ago to try and undo the merging of neurodiversity into clinical autism. It is hard to predict whether the fairly modern aspie diversity movement will die out as clinical autism diagnosis predominates. Or whether Aspergers detailed studies will be cast aside.

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Dr-David-Banner

My site on the whole Asperger phenomenon is now being created. For the moment it is in Russian. It may take some weeks.

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Dr-David-Banner

"Peter Szatmari, another child psychiatrist who was part of the DSM IV effort:

Szatmari does not bemoan the removal of the Asperger’s diagnosis from the DSM. He considers the lack of consensus among clinicians clear evidence for its failure.

In fact, he even struggles to clarify to his patients and their family members exactly what it is they’re dealing with.

“People ask me if Asperger’s is the same or different as high-functioning autism,” he reports. “And I say, ‘Yes.’”

The confusion extends outside of patient-doctor conversations. At the height of the Silicon Valley tech bubble, Wired magazine published a questionnaire developed by autism expert Simon Baron-Cohen, a self-report test for Asperger’s syndrome.

Siegel, whose office is in San Francisco, recalls that the questionnaire caused such a stir among the techie set that she was flooded with responses.

"'I ended up telling my intake coordinator, 'If they leave you the number of their secretary to call back, do not call them back,'” she says. “If they have a secretary, they do not have Asperger’s syndrome.'"

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Comment: That is what had me baffled some time ago - the distinction they made between HFA and Aspergers.

I scored high on Baron Cohen's test but had to chucke when it seems lots of others did as well.

 

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Sanctuary

You raise a good point about online tests. There is always the possibility that these tests "over-diagnose" ASD, sometimes because the answers suggestive of autism could apply to most people at some time, e.g. almost everyone has felt socially awkward at times or become frustrated by small talk. Individuals may also tend towards self-deprecation, downplaying their social and communication skills, either out of modesty or lack of confidence. Test results always need to be compared with "normals" so comparisons can be made. This did happen with the quiz / test for the Channel 4 programme "Are You Autistic?" where average test scores were given for males and females on and off the spectrum but for many other tests no comparison is made. It may be that many people who take the tests get results indicative of ASD but these may be self-selecting where those who think they may have the condition are far more likely to take them.

This is why tests can only be used to do the most basic pre-screening and even then they must be careful to avoid the opposite error of wrongly indicating someone isn't on the spectrum. All the answers to questions need to be discussed with experts. However the most important thing to explore is the impact on someone's life. Someone who genuinely has ASD will be significantly affected by it, usually suffering difficulties in their lives. Often in the case of children and maybe teenagers it is these difficulties (real or perceived) that prompt parents, teachers or others to investigate whether ASD is at play - the child generally hasn't instigated the process (and may not even want a diagnosis). By contrast adults are usually self-referrers and some may only have suspected ASD after taking tests or reading or hearing about it from some source (this is what happened in my case).

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Dr-David-Banner

Asperger Syndrome is very complex. I can't help but conclude that the mixture of assumptions, crossed wires and even myth have led to the ditching of it as a diagnostic. Personally I think the best research ever done was in Vienna under Hans Asperger. There is a problem though. All of Asperger's patients were unteachable in normal school. Or, as in the case Willow described, there was conflict with other students or bullying. That due to the autism condition. These children had to be sent either for private tutoring, or to Asperger's clinic. I had pretty much all the symptoms they had: motor clumsiness, bad posture, unable to be taught in groups, OCD, scrawly and crooked writing, weird scientific interests and exclusion. So, Asperger only got to study children who were removed from normal school. That means those with less severe autism never boarded in the clinic. Indeed Asperger never had any female patients so he speculated autism for them differed or developed more over time. Therefore to diagnose severe autism school and childhood is a key factor. After that, if gets more complicated as some autistic children managed to pass through the regular school system. I had a friend with severe AS who did great at maths in a regular catholic school. Straight A grades. At the moment I am helping a family where the patient was not diagnosed with AS (by any specialist) and yet I noticed the following: Very awkward posture and motor movement. The person started to act out playing golf in the middle of a crowded room. To me that is normal but neurotypicals never act out of script or risk ridicule. I also witnessed hand-flapping but the individual denied he engaged in that stimming. Thus, psychologists were not getting a full picture. Stims really matter and hand flapping is very typical in autistic children. One thing Asperger stated as fact is one autistic can far more easily detect another. Or even react. I also.started to analyse NTs. You can see how their body movements communicate and they use facial muscles a lot. Their eyes have a certain communication. As Asperger noted, autists communicate as if into a vacuum with no real change in tone in pronounced cases. 

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Dr-David-Banner

One of these days NTs are going to notice my analysing their behaviour. And how about the word game? To play it you recite a list of key words and the subject has to respond with whatever associative word comes to mind. As in, dog/bone hate/crime - and so on.

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Dr-David-Banner

"Wing was the author of many books and academic papers, including Asperger Syndrome: a Clinical Account, a 1981 academic paper that popularised the research of Hans Asperger and introduced the term "Asperger syndrome". Although groundbreaking and influential, Wing herself cautioned in her 1981 paper that "It must be pointed out that the people described by the present author all had problems of adjustment or superimposed psychiatric illnesses severe enough to necessitate referral to a psychiatric clinic ... (and) the series described here is probably biased towards those with more severe handicaps."

There you have the "rift", I think. Wing herself noted that the patients in Asperger's clinic were significantly handicapped. This is because the regular schools couldn't process the children that were then sent to Asperger's special school. Wing then tried to address the symptoms as they relate to more socialised people. Many of these people would have struggled at normal school but still have been able to pass grades or make friends, eventually hold down a job.

When the diagnosis was developed by Wing in the eighties, people everywhere sought out diagnosis. Many mid-range autistic people got evaluation.

Recently problems started to surface. I'm told psychologists were actually struggling over agreement in lots of diagnostic areas. There were cases of psychologists un-diagnosing the diagnosed or diagnosing the un-diagnosed. Then, self-diagnosis developed a surge in the 1990's with the "Aspie Movement". Many of these people had correctly diagnosed a condition they'd struggled with for years. They were often intelligent, well-read individuals who simply knew they had these issues and discovered more over time, through forums and group support. Some others, however, (as in the case of the techs doing Baron Cohen's test), may have only been a bit "quirky".

At some point the whole thing started to get confusing. It was decided to scrap Asperger Syndrome and adopt "autism spectrum". I can't help but think too the removal of the familiar "Aspie" label was carried out in the hope diagnosis would become more serious.

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Dr-David-Banner

Having read the descriptions of Fritz and Helmut and so on, I would not say they were clinical cases. They were severe cases and I related totally to their situation. The motor issues, ball catching, inability to learn normally in class and fetishes, such as holding onto toys or dolls as treasured items. I think what all Asperger's patients had in common was he only got to see those who had been removed from regular school. For adults it was too late. One more point is Asperger's study was based mainly on Austrian German speaking boys. Possibly cultural aspects contributed to the puzzle.

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Dr-David-Banner

I must be getting intolerant of lack of knowledge as I age. Casually reading a BBC article on how modern psychology has developed the study of AS. Initial warning signs soon triggered by the pic of Einstein at the top of the page. Personally I don't think Einstein had the syndrome. I think he did have the proverbial "dash of autism" but no sign of major meltdowns or typical symptoms. The article then gets worse to the point I cringed. Males with AS collect masses of information on dinosaurs and girls collect Barby costumes. I also cringed when said article stated children with AS don't experience learning difficulties. Every patient Asprger had did poorly at school because the teaching methods were based on group interaction. What he actually stated was the boys were often intelligent but needed individual schooling to address their differently wired brains.

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