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.
Left Brain Right Brain 
Recent Comments