Left Brain Right Brain

Mr Schafer’s continuing campaign to drive a wedge between classic (Kanners) autism and Aspergers Syndrome continues apace. However, those of us who are afficionado’s of Mr Schafers note an increasing use of modified language coupled with more disingenuous ploys. In his latest report he says (and remember the overall goal here is discrediting the link between AS and Kanners autism):

Presently, anyone with a mental disorder can label themselves as “autistic”, presumably to avoid whatever stigma attached to their actual particular diagnosis. Who is to know otherwise who is really autistic? The differential diagnoses in these areas can be quite difficult for the experts (let alone for any amateur.)

Which is all very true but why is he saying it? I could call myself an elephant if I wish but it doesn’t make me one. The ‘who is to know who is really autistic’ line is patently a dig at the autistics who have challenged Mr Schafer but who have refused to publish their private medical diagnosis’ on the internet for his personal approval. Yes, anyone can call themselves autistic and I’ve no doubt that some who claim autism aren’t really autistic, just as some who claim some kind of expert knowledge on diagnostic criteria are also patently inexpert, but really there are bad apples everywhere in every social setting. Attempting to write off an entire section of society as part of a group of decievers is as facile as it is incorrect.

We are starting to witness ugly sociopath and sometimes violent behavior from people who claim to be “autistic”. They display behaviors that have little similarity to any disorder on the spectrum, Asperger’s or autism. The immediate source of concern from myself and other parents over the proper use of spectrum labels is our witnessingn of some of these self-diagnosed “autistics” banding together for political advocacy.

Sounds scary huh? Well, maybe it would if it was representative. First Mr Schafer rolls out his patented ‘Remote Diagnostic’ machine and decides everyone is sociopathic. He then immediately links that very emotive, intimidating and wrongly used word with a group of people who, at worst, disagree with him. I’m in no doubt that Mr Schafer has been on the recieving end of some threats and abuse by some people – some of whom may be autistic, some of whom may not – but the point is this: Mr Schafer is blatantly and quite shamefully attempting to make political gain out of this by associating this almost certainly tiny idiotic minority with the larger advocacy movement. He also interestingly makes a blanket statement regarding how ‘other parents’ are concerned. Well, I’m not. I think the autistics (and yes, Mr Schafer, they are, by every criteria you care to nuzzle at, autistic) have the spectrum labels pretty much spot on – as do every important autism researcher on the planet. The only people who don’t are the CAN/GR/MMR/Epidemic apologists who refute scientific evidence with their own increasingly irrelevant and error-strewn theories.

The thrust of their advocacy is to redefine autism as not being a disability, but rather a lifestyle that society should learn to accommodate and not treat or “fix”. They have already had some success at this in the media, to our horror.

A lifestyle? Deary me, Mr Schafer, if I were a lesser man I would feel myself getting quite annoyed at your patronising, wilfully ignorant stance. I’ve never spoken to any autistics either in person or online who have tried to promote their autism as a lifestyle choice. Yes, they promote acceptance – do you ever wonder why it is that you do not? Yes, they also turn away in horror at the idea of a cure. They are autistic, they are who they are and you want to find a way to stop them being who they are. I find it bewlidering that you can’t see that people would be upset by that – your attitude smacks of those who used to treat Emily Pankhursts supporters as insane and commit them.

I’m personally glad to witness the success they’ve had as it mirrors my own beliefs that society should be more tolerant and accepting of difference (the drive to eradicate what we don’t understand immediately is something I’d imagned long dead in the West’s colonial past) and I think your gross and I suspect deliberate misrepresentation of autism as a lifestyle choice and your further association of those who disagree with you as purveyors of that choice is arrogant, misrepresentative…and a little bit desperate.

No one had problems with anyone on the spectrum calling themselves “autistic” before these exploiters started to take advantage of our loose usage of the term. This is what is behind our fears. Their efforts to make everyone and themselves feel better about autism by redefining it innocuous will come at the expense of everyone on the spectrum

Yet again, more misrepresentation – I’ve never heard any autistic speak of autism as innocuous. A simple look at sites such as autistics.org reveal people who suffer greatly with some of their comorbid conditions or whos autism has led them through struggles that would reduce Mr Schafer to well, maybe appreciate their view a little more? Yet, they refuse to be defined by their struggles and wish to be proud of who they are. They don’t wish to make other autistics feel better by redefining it as innocuous, they wish to make other autistics feel better by standing up and being heard in the face of what is becoming an increasingly desperate and deliberate demonisation and belittling by people who know they are losing the argument.

You have to hand it to Mr Schafer. As a dealer in misinformation and alarmist tactics he’s second to none. Oh sure, he occassionaly lapses into a more open view of what he really thinks of people with autism:

those who would define Aspergers or autism as little more than an odd-ball minority lifestyle made up of ‘geeks’ and savants with ticks doing tricks……the very real, if not romantic ‘culture of autism’ in which anyone who taps a pencil can opt themselves in as a member.

But most of the time he’s actually very good at how he spins his misinformation. If Alistair Campbell or Karl Rove ever need a stand in, I’d be happy to write Mr Schafer a glowing recommendation. Here’s part of a response he wrote to a woman asking for his ideas on who has the final say on how autism as a spectrum disorder is classified:

There are eight established Asperger’s care and advocacy groups on the east coast with good community reputations who refer to themselves as autism organizations, despite clinical Asperger’s being different from clinical autism. Why would such groups seem to go out of their way to confuse the public so? By referring to Asperger’s as autism, it helps paint Asperger’s as a serious disorder, which is understandable. But it also trivializes autism, making it appear to be less serious than it is. Those self-described autistic people who demand that autism not be cured or treated highlight the threat this blurring presents to people who really have autism.

Wow! Now, concentrate hard here because there’s so much spin and misinformation going on here that its easy to miss the true genius of Mr Schafers abilities in misinformation. Lets take them one by one.

First, the biggie – “despite clinical Asperger’s being different from clinical autism”. Lets just stand back and admire that for awhile. Until recently, Mr Schafer hasn’t used the word ‘clinical’ in his reports at all. His line has been that Aspergers is not autism – end of story. Obviously the constant chip chip chipping away from autistic advocacy groups has rendered Mr Schafer more ammenable to using more appropriate language. However, through the clever use of this phrase he makes it appear that he’s maintaining the exact same position – well done Sir!

Unfortunately there are serious flaws with even this statement. First of all, Mr Schafer is not to the best of my knowledge, a diagnostician except of the armchair variety and hence any interpretation of diagnostic criteria on his part should be viewed with at best, healthy scepticism. Secondly and more substantively, a lot of properly accredited and qualified autism researchers and clinicians are very unhappy with the recent change in the diagnostic criteria that leads Mr Schafer to be able to make his statement at all.

The diagnostic criteria in the DSM, which provide a differentiation between autism and Asperger’s syndrome, have been examined by several research studies over the last five years. There has been some criticism from clinicians and research that the criteria do not identify the disorder Hans Asperger originally described. The four cases he described in his original paper would be diagnosed, according to DSM criteria, as having autism not Asperger’s syndrome. (Miller and Ozonoff 1997). If one was to use the DSM criteria, Asperger’s syndrome would be a very rare condition.

Dr Tony Attwood

Which is to say, that yes, Mr Schafer is correct, there is a difference between clinical autism and clinical Aspergers but that it only exists through the reclassification of Aspergers into something that was not described by the man who first classified Aspergers Syndrome. A disengenuous solution ingeniously expoited by the ever-ready Mr Schafer. After all, as he himself says:

Some experts have problems with these definitions, and who is to say they’re wrong. It’s just the only standard out there for defining the labels. The fuzzier the labels are, the more room there is for mischief.

You cheeky scamp Mr Schafer! Next you’ll be telling us that Aspergers and autism don’t fall under the exact same set of Pervasive Development Disorders or Autisitc (note that word!) Spectrum Disorders however I suspect that seeing as, at bottom, both Kanners autism and Aspergers syndrome actually do depend on the same set of basic differences you’ll be scuppered. Bad luck.

Next up is Mr Schafers statement that:

By referring to Asperger’s as autism, it helps paint Asperger’s as a serious disorder, which is understandable. But it also trivializes autism, making it appear to be less serious than it is…

Mr Schafer cleverly omits telling us who exactly would be ‘trivialised’ by this painting of Aspergers as a serious disorder. Mainly as one suspects not many people would be. The truth, as experienced by numerous people on both flavours of the spectrum, is that both are pretty serious. It does make one wonder why Mr Schafer is quite so determined to seperate Aspergers and autism, despite medical data stretching back decades that quite baldly and repeatedly states they are linked. I personally have to come to the conclusion that he is growing ever more concerned at the growing amount of people within the actual autistic movement (i.e. autistics and their parents) who challenge his misinformation and spin in growing numbers and with growing confidence to share the truth – if he can seperate the two then he can dismiss the Aspergers autistics as irrelvant to his push for a cure. It must be deeply irritating that there simply is no evidence to support his position of seperation.

Next, Mr Schafer goes over his position once more:

Those self-described autistic people who demand that autism not be cured or treated highlight the threat this blurring presents to people who really have autism.

Ahh, a masterstroke: using the traditional scare tactic and doubling the scare factor by making it an unfounded, unsubstantiated and medically incorrect statement! Truly in the annals of spin and misdirection Mr Schafer is a magician. ‘Self-described’ people indeed – genius! Or it would be if these autistics actually were ‘self-described’. Unfortunately the evidence is, at best, out on this issue and very very likely to indicate the exact opposite. Far from being ‘self-described’ these people are actually merely circumspect with their private medical data. Ironically, the only person who seems to make a habit of off-the-cuff diagnosis is (drum roll…) Mr Schafer. In fact, he’s so good he can even make off-the-cuff diagnosis of people over the internet! Surely I can’t be the only one simply amazed that diagnosticians are not clamouring at Mr Schafers door to learn the secrets of his (no doubt patented) Automatic Autism Judger.

Sadly Mr Schafer’s spin cannot stand up to the rigorous process of ‘checking for oneself’. Upon undertaking this process one discovers that (gasp!) no autistics claim to not want any treatment (or at least the ones I’ve spoken to anyway). They do ask that society treats them with enough respect that they are not labelled as part of a ‘disease’ or ‘ticks with tricks’ or ‘an odd-ball minority lifestyle made up of ‘geeks’ and savants’ or that they can reach a position where people respect them for their difference instead of trying to cure the incurable. But treatment? Oh yes, autistics ask for that. They are fully aware of when they need help and under what circumstances our role as supportive parents can make life easier.

Mr Schafer is also a staunch opponent of the opinion that the rise in autism rates can be attributed to better detection and diagnostic criteria. He says:

It was the new criteria for autism defined in the DSM IV that was the impetuous for the charges of the autism epidemic being
an illusory artifact of different diagnosing. In other words, this argues that there has always been an autism rate of 1 to 166 and only now because of the new definitions it appears to be a big increase. This is ridiculous because it would mean that there are still hidden hoards of autistic people from before the new definitions still walking around un-or-misdiagnosed.

You have to admire the tone, the authority it all sounds so commanding doesn’t it? It almost sounds like he knows what he’s talking about. Almost. Mr Schafers view that its ‘ridiculous’ to assign the autism ‘epidemic’ to better diagnostics is addressed by medical experts – people who actually do know what they’re talking about and who are also experts in the field of early detection of ASD:

However, the signs of Asperger’s syndrome in very young children may be more subtle and easily camouflaged at home and school. On reflection, parents (especially mothers) and teachers have often been concerned about some aspects of the child’s cognitive development, in particular their social reasoning, but their concerns may have been intuitive, and difficult to describe to clinicians. It is not until the child is expected to show more advanced cognitive abilities that formal assessments indicate significant
delay

Dr Tony Attwood

So, when Mr Schafer, a non-entity in the field of medical diagnosis, calls the idea of ‘hidden hordes’ of people walking around ‘ridiculous’, a world renowned expert on ASD and diagnostic criteria says that its not only very likely its actually a feature of the very type of autism Mr Schafer is so intent on denying. Not irony exactly but still a bit pithy.

So whilst we have to admire Mr Schafers increasing attempts at spinning the data we have to deduct marks for the ease of refutation.

This post does have a serious point. Mr Schafer has made his position clear. He will do anything to further his aims. This includes deliberate attempts to mould the facts to meet his version of the truth and misrepresenting an entire group of people. Speaking as the parent of an autistic child diagnosed with severe classic Kanners autism I say for the record that I neither trust him nor appreciate his attempts at wilful misleading of parents. If he had any decency he’d at least retract or admit to the inaccuracies in his beliefs. I doubt he will though and more parents will join the queue to rid the world of their children.

All quotes from Mr Schafer found on Yahoo Groups.

You may or may not have heard of Lenny Schafer. He runs the Schafer Autism Report – an email digest which collects news stories related to ASD’s and comments on them. He’s staunchly pro-cure.

At the moment, he’s the darling of a wide range of parents who have autistic children who also believe they want a cure for their children.

This puts him firmly in opposition to groups such as autisitics.org who are a group of people on the spectrum who do not wish to be cured. They claim that a cure is tantamount to ‘killing’ them in terms of who they are. An ASD is so deeply part of who they are that they claim to remove or attempt to remove it is effectively removing their individuality. They do not see an ASD as an illness to be cured, more a (different) reality to be experienced.

These two groups are in frequent collision with each other. The group at autistics.org say that for parents to wish to cure their children is a basic denial of their childrens human rights to be who they are. The group vocally represented by Lenny Schafer say that to deny their children the possibility of a cure (should one ever exist) denies them the right to participate fully in life.

Both views, on the face of it, have some merit. They’re both definitely born out of a desire to do the best thing for autistic people. However, look past the surface legitimacy of the Schafer led group and you see a loose conglomeration of alarmists using very questionable tactics.

The first tactic the Schafer group uses is to say that as parents they are the only ones allowed to speak for their childrern. This is true up to a point. I certainly feel that as my daughters advocates, my wife and I are best placed to say what is best for Megan. However, lets not forget that Megan (or any autistic person) is not ill. What they have is part of them in the same way that I am right handed and dark-haired. In terms of speaking for my daughter on issues to do with autistics life experiences, the group at autistics.org are vastly better placed then me to represent her. Why? Because they, like her, are on the autistic spectrum.

One of the most obvious things about any child is that they grow up. They grow up and develop a sense of who they are and like any person affiliate themselves to particular viewpoints and opinions (politics, football teams, human rights etc). As they do this who are we to decide that who they are is something we as non-autistics are entitled to cure? I’ve spoken to a lot of autistics both in person and online and I can honestly say I have never met any who wish to be ‘cured’. The wish for a cure seems to be the sole province of non-autistics.

This brings me neatly on to the second tactic, Schafer et al employ. They claim that those at austics.org and the other groups associated with them are comprised of individuals who aren’t actually autistic. This claim rests of on two points. Firstly, they say that some people within these groups are not on the spectrum whatsoever. To prove this they ask to see the official diagnosis of the group members. As far as I know, no one from the group opposing a cure has provided details of their diagnosis and why the hell should they? A persons medical diagnosis is their own private business. It speaks volumes about the depths that Schafers group is prepared to sink to if they consider that publishing one’s private medical business or forwarding it to anyone else is an acceptable rebuttal. Secondly, they claim that of those people at the autistics.org group who are on the spectrum, most of them are high functioning and/or Aspergers. Why is this an important distinction? Well because they back up this by claiming that those who are high functioning cannot possibly empathise with those who have a more severe form of autism (note how they seem to feel that they as non-autisitics they can empathise with their childrens autism). Schafer himself has undertaken a bizarre campaign to actually remove Aspergers Syndrome from the ‘list’ of syndromes that the phrase ASD covers. Do any leading theorists in the field of ASD believe Schafers claims that Aspergers is not an ASD?

Professor Simon Baron Cohen (Professor of Developmental Psychopathology and Director of the Autism Research Centre at Cambridge University. Fellow of Trinity College, Cambridge) certainly doesn’t seem to feel this. In a letter to Aspies For Freedom Professor Baron Cohen states:

As you may know, I was one of the first to write in the scientific literature that autism and asperger syndrome could be viewed not as a disability but as a difference. That was some 5 years ago.

What about Dr Tony Attwood (Honours degree in Psychology from the University of Hull, Masters degree in Clinical Psychology from the University of Surrey, and Ph.D. from the University of London). He says:

Dr Hans Asperger, an Austrian paediatrician, originally described Asperger’s Syndrome in 1944. The syndrome has more recently been classified as an autistic spectrum disorder.

Also in a letter to the afore mentioed Aspies For Freedom, Dr Attwood states:

Thank you for your message and I share your concern with regard to the zealous way in which some people would want to cure autism. I think by doing this we would lose one of the essential aspects of the human condition.

So thats two very big-hitters in the scientific community who patently disagree with Schafers opinion that Aspergers Syndrome is not an ASD. They also have clear reservations about a cure. Schafer, I might say, has zero medical training to the best of my knowledge. Not that this stops him from making frequent medical diagnosis’. This formed part of a recent response to a letter to The Schafer Report from Lenny Schafer himself:

Given their (the group at autistics.org one assumes) apparent lack of diagnosis documentation, the misanthropic attitude and behavior of those in this group appears to be more like Borderline Personality Disorder, which is a
differential diagnosis to Aspergers.

I repeat again, unlike the expert researchers quoted, Lenny Schafer to the best of my knowledge has no medical training. He also claims that because the people at autistics.org are capable of communication this means they are not autistic. Baron-Cohens and Attwoods total lack of indication of the same reasoning in their communication with Aspies For Freedom tends to indicate otherwise.

Once more for the record – Lenny Schafer, to the best of my knowledge has no medical training.

Lorna Wing, possibly the biggest hitter of them all in the field of ASD research presents an excellent overview of the issues in identifying Aspergers as related to autism. She states:

In the light of this finding, is there any justification for identifying Asperger syndrome as a separate entity? Until the aetiologies of such conditions are known, the term is helpful when explaining the problems of children and adults who have autistic features, but who talk grammatically and who are not socially aloof Such people are perplexing to parents, teachers and work supervisors, who often cannot believe in a diagnosis of autism, which they equate with muteness and total social withdrawal. The use of a diagnostic term and reference to Asperger’s clinical descriptions help to convince the people concerned that there is a real problem involving subtle, but important, intellectual impairments, and needing careful management and education.

In other words, Aspergers Syndrome is a useful label to give to those not on the spectrum to help them differentiate between the needs of someone with Aspergers and someone with classic (Kanners) autism. No one, despite the best efforts of Scahfer to muddy the waters here, is claiming that Aspergers and classical autism are the very same thing. What the group at autistics.org are claiming (with the full suppoprt of Baron-Cohen, Attwood and Wing it seems) is that they are based on the same triad of differences that constitute an ASD.

The third tactic that the Schafer group utilises is basic fear-mongering. They claim that the group at autistics.org say that no one should help autistic children. This is a lie. They say that the group at autistics.org say that no autistic child should recieve therapy. This is also a lie. What they do say is that there are certain types of therapy which are bordering (and in some cases crossing the line) into abuse (see examples of Lovaas abuse. Please note however that this form of ‘treatment’ is on the decline). Moreso, what they do say is that they need help, that all autistics need help and that this, despite the best efforts of Schafer and his ilk to obscure the fact, is not the same as wanting or needing a cure. A cure removes the autism completely. Interventions into specific situations (comorbidity is the ‘official’ word here) that are aligned to the autism are vital. Below is a quote from an autisitic friend who sums it up perfectly:

I don’t want to be cured. I want a world that understands and I would want help that is effective in helping a child.

Schafer and his suppporters are incapable of seeing this particular shade of grey. To them everything is black or white.

I have to wonder at the mentality of someone who would perpetuate such misleading information and claim to be fighting the good fight (Schafer claims that fighting for a cure for autism is the ‘most noble cause there is’). I can feel pity for Schafer and I know that in his heart of hearts he feels he is doing what is best for his kids but even more I feel pity for his kids should a cure ever come into being. He would administer such a thing in a heartbeat, never thinking that his child, as mine, could be treated for their comorbid conditions and grow up to live a fulfilling life and still be autistic.