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.
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