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BEING TOLD OR BEING TOLD OFF?
by Michelle Dawson
forethought re the distinction
The autism/Asperger distinction is the result of the best scientific evidence now available. This distinction is evident in differences in peaks of ability. These differences measure consistently so long as the diagnostician has not, as some have, arbitrarily adopted diagnostic priorities--like social reciprocity, or ďempathizingĒ--to suit himself. Other observations related to development, and to what scientists rudely call co-morbidities, tend to confirm the distinction shouting from the peaks, so to speak.
Of course this subject is a quagmire in which remaining upright is practically impossible. Acknowledging the distinction does not disrespect the importance of similarities, but hereís a small sample of the scientific fallout of making autism and Aspergerís interchangeable:
1.) Consistencies in the developmental course and the abilities of autistics across all levels of measured intelligence are erased;
2.) Peaks of ability, and their role as precursors for splinter and savant abilities, cease being characteristics of a specific diagnosis and unparsimoniously become the random and incidental quirks of individuals;
3.) ďLow-functioningĒ autistics are classified by level, rather than kind, of intelligence; they are then segregated and relegated to behaviourists, while cognitive scientists blithely pursue their social deficit theories (come to think of it, this one has already been afoot for more than a decade); and
4.) Intelligence in autism/Aspergerís, now shorn of all striking consistencies and distinctions, remains always and only a matching variable which nobody has any cause to study.
I need to be told what my diagnosis is and why this diagnosis. If I didnít care about why I wouldnít be here.
If you diagnose me as an undifferentiated Asperger/autistic, I need to be told why all the more. If I'm not aware that scientists have taken up sides on this issue, I need to be told about this and again told why. Whatís the problem? Why canít you guys figure this out? And if you very firmly are in the no-significant-difference faction, I may ask you not just about your science but about your ethics and priorities. Usually, I've noticed, when Asperger/autistic merges, "low-functioning" autistics are jettisoned into oblivion with a shrug. Since I identify totally with the cast-offs, I need to be told why you are setting them--or is it us?--aside.
If you differentiate--maybe having noticed that the similarities across all "levels" of autism are significant, and that discarding them in order to lump in Aspergerís insults parsimony and ethics both--I need to be told all of this. You will be letting me know that I am worthy of this information. If I start with accurate information, I am less likely to be pushed around. I am less likely to have my mind and my diagnosis recruited by autismís hundreds of hungry and greedy agendas.
I need to be told that autism versus Aspergerís is not a value judgment or a contest. It is not better/worse or us/them. And if my diagnosis is Aspergerís or if it isnít, I need to be told that Aspergerís is not and has never been a "mild" form of autism.
It might help for me to know that while prevalence rates for the spectrum as a whole are in recent studies consistent, the prevalence rates for each diagnosisóautism, Aspergerís, and that none-of-the-above phenomenon of PDD-NOSóare anything but. While I would never accuse you of improvising, I need to be told that many diagnosticians are winging it.
I need to be told that my diagnosis is great news. Whether autism or Aspergerís, Iím among some of the best and most fascinating human beings who ever existed. I have a lot to live up to and this I need to be told.
And I need to be told that my diagnosis is terrible news. I may risk my employment or my liberty by honestly stating who I am. I will as a matter of course be left out of the entire public, legal, political, and scientific discourse about myself. If I object to this, my character and sanity will be called into question. After all, I'm autistic. My role is limited to telling my story then leaving the room while the real people get down to business. I need to be told that all the work I do will always be completely compromised by my diagnosis. My work will only be used to verify my symptoms. Then it will be dismissed. If I should have any ideas in areas that count, like research and the law, I will need to have them promoted by persons who are not so ruthlessly disabled by prejudice, intolerance, and ostracism.
I need to be told why this prejudice and intolerance and ostracism are not censured, prosecuted, and punished as they would be were they applied to persons who are non-autistic. I need to be told.
Also I need to be told that autism research and treatments have been developed and designed to fulfill the needs of a wide array of non-autistic persons. If I have this accurate information, I will better be able to read the research and assess the treatments. In fact, I need to be told that I have a positive obligation to be conscientiously critical of autism research and treatments which are shoddy in their conception, execution, and/or ethics. There is no shortage of shoddiness in these areas. I need to be told that peer review sometimes fails, and that these failures have been most flagrant in the research and treatment of atypical persons judged by society and scientists to have no rights or worth. So autism research will tell me more about autism researchers than about autistic people, and this is unlikely to change any time soon.
As for autism societies, I need to be told with emphasis that, in spite of their names, they will neither represent nor welcome me. Unlike other disability organizations, autism societies practice and promote the intolerance and exclusion of those they are mandated to serve. The situation varies from country to country, but there exists no autism society that is about autistic people. Donít tell me about FEAT groups and CAN and DAN and Safe Minds and so on, I will get emotional and I know thatís not permitted. There also exist specific groups for Aspergerís. If I look, Iíll find not one solitary Aspergerís person in the very fancy governance of the one Canadian organization claiming to represent them.
In view of this, I very much need to be told about what happens to a group of people who are entirely at the mercy of decision-making processes which exclude them. Autistics and Aspergerís people, among ourselves, show clearly the pattern of futility lived by persons helpless to influence their own lives in any significant area. We are treated like small stupid unruly children, not bright enough or responsible enough to know who we are and what we need. No group of persons treated this way has ever had good social or economic outcomes. We are doing better than we should be, given our matching straitjackets of denigration and ostracism.
And you must remind me that regardless of the extraordinary against-all-odds accomplishments of Aspergerís people and autistics, we are still invariably considered to be a devastating burden on society. I need to be told that I am not a burden. I am not another sad and tragic statistic requiring endless expensive services. I will, however, be used this way by dishonest non-autistics who, honestly, should be denounced for their irresponsibility then treated for their emotional problems.
I need to be told that every message directed towards me as an autistic will inform me that my only hope is to train myself--my thoughts, my actions, my life, and my soul--to conform properly to the needs and expectations of non-autistics. And I need to be informed that I should reject all such messages while smiling at the bigots who emit them.
I need to be told that if I think things are hard for me, instead of whining, I should consider what autistic children have to contend with. They are called hollow shells by their own parents. They are said to have no personality, no soul. Their parents go to court to get monetary damages for not having the proper "consortium" with their children, because their children, being autistic, are the wrong kind of children. Yes, Iím aware that autistic children would be alert to their parentsí views, you donít have to tell me.
Then I need to be told that I canít just wait around for Rosa Parks to materialize. After all, she was prepared for her role and had an organization behind her. This is not going to happen in autism, so it is up to me entirely. I have to think that way, and yes it is for sure not fair. Every day Iím going to have to get on that damn bus and sit down and not get up. Even though Iím not fit to tie Ms Parkís shoes, and nobody seems to learn from what I do, I must every day get on that goddamn bus and refuse to give up my seat and get dragged away, humiliated. I cannot wait for someone else to do this. That is not allowed. And you donít want to be obliged to tell a whole other generation what you are now having to tell me.
Then I might ask you why you are not doing anything yourself. I thought you would ignore that question.
I need to be told why Aspergerís people and autistics are judged the way ballerinas would be if you looked only at their feet. You would see deformity, pain, ugliness. You would refuse to consider the strength, determination, and beauty that resulted in those feet. The feet must be like non-ballerina feet! And so the treatment begins. Every increment of improvement in the feet is recorded and praised. The strength, determination, and beauty of the ballerina, always having been considered useless and worthless, are neither missed nor mourned as they are corrected into extinction. Can you explain why it is that we who are autistic or Asperger are judged this way? Because I need to be told.
But mostly, and always, I need to be told why it is wrong to be autistic. And donít avoid the question. Because if there were nothing wrong about being autistic, this whole business--diagnosis, disclosure, whatever--would be a piece of cake.
afterthought re the question
Not having an official diagnosis may be risky, resulting in the non-diagnosed Aspergerís person or autistic being drugged and incarcerated. Both trying to get an official diagnosis, and finally having one, also pose risks. My experiences in these areas have been extreme. And I have been diagnosed 7 1/2 timesódonít ask. One of my diagnoses resulted eventually in the demolition of my career and the successful prosecution of the destructive diagnosing ďprofessionalĒ, in that order--so caveat autistic. I have also been diagnosed by the most thoughtful and diligent diagnostician anywhere. Failing to notice this at the time of the interview, I instead criticized this scientistís science, and if I remember properly, his ethics as well.
Then, in an effort to be followed at a centre geographically accessible to me, I went through yet another diagnostic interview, this time with a scientist famous in his field.
ďYou do demographics,Ē I said brightly.
ďNo, no,Ē he said, ďI do epidemiology.Ē
And he explained the difference in clear and simple words. So then I asked my question. ďWhy is it wrong to be autistic?Ē
He replied that no, he doesn't see it that way, as autism being something wrong.
I said, ďIf that were true, then you would be doing demographics, and not epidemiology.Ē
[Authorís explanation: this work was commissioned as a chapter in a book about diagnosis, disclosure, and related topics re Asperger syndrome. I was invited to participate even though my diagnosis is not Asperger's. My assignment was to expound on how to break the diagnosis to the diagnosed. I fulfilled my contract early in 2004, but the publishers did not fulfill theirs. Since this work was designed to be timely, long ago, and since I have no way of knowing if or when the planned book will materialize, Iíve taken the publish-and-be-damned route.]
|© Michelle Dawson 2004 | Published August 29, 2004|
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