Autistic Pride and Ownership
I just added the following two paragraphs to my narrative. Normally, I would not publish a new addition to this blog, but I felt that the statement was, at least to me, especially significant.
These days, I will refer to myself, conversationally, as an autistic or, in those instances where more precision may be required, either as an Asperger’s autistic or, informally, as an aspie autistic. I know of other autistics, particularly other autistic activists, who also follow this basic convention. There has been a history of oppressed peoples taking ownership over designations which had been historically associated with socially stigmatized statuses. On its most basic level, owning a word deprives the bigot of a portion of her power to hurt the targeted individual.
For instance, Quaker was at first a term of derision for members of the Religious Society of Friends, while Shaker was a taunting appellation for members of the United Society of Believers in Christ’s Second Appearing. Even the initial use of the word, Christian, was, in the ancient Roman Empire, gibelike. In recent years, the pejorative fat has been embraced by the National Association to Advance Fat Acceptance. Some lesbians now openly speak of themselves as being dykes, and many lesbians and gay men routinely refer to themselves as queer. (There is even a queer theory in the humanities and social sciences.)
One may argue for a substantive, or at least mitigatory, value in calling oneself an Asperger’s autistic when others have tried to flee from the autistic label. As I have grown ever more self-conscious in the biographical social alienation of my autistic self, ownership has, to me, become a statement, an affirmation, of autistic pride, a sentiment I would, nonetheless, immediately distinguish from a platitudinous arrogance or banal superiority. As I am proud to be an autistic, I am, within the compasses of my other selves, proud of being a sociologist, a journalist, a ventriloquist, and so forth.
My 13 year old son has a diagnosis of Autistic Disorder. HE is autistic.
YOU have a diagnosis of Aspergers Disorder. There is no need to confuse the two distinct disorders.
Is there?
The issue is more complex than what is indicated by the DSM-IV-R and the ICD-10. When the new edition of the DSM comes out in 2-3 years, the published reports I have seen say that (Kanner’s) autism, Asperger’s autism, and PDD-NOS will likely be subsumed under “Autism Spectrum Disorder.” In the peer-reviewed literature which I have read, that terminology is commonly in use already.
I agree that the Pervasive Developmental Disorders are commonly referred to as Autism Spectrum Disorders. The label PDD may well be “officially” replaced by ASD but why should disorders such as Aspergers and Autistic Disorder be merged?
Asperger’s by definition excluded intellectual or cognitive deficits. Autistic Disorder does not and the challenges faced by a person with Autistic Disorder and intellectual deficits are enormous. They are of a different nature and have different life consequences than those faced by a person with Aspergers.
My experience includes 10 years of advocacy on behalf of persons with Autistic Disorder and Aspergers. I have appeared in court on a pro bono basis on behalf of some persons with Aspergers and have seen the very real challenges they faced. But they are still different challenges than the persons I have seen living in Mental Health institutions. And I have visited two such facilities here in New Brunswick, Canada. The knowledge that my severely autistic son might reside there after I am deceased is very sobering.
I am a sociologist, not a psychiatrist or psychologist, so I am not qualified to discuss the technicalities of merging (Kanner’s) autism, Asperger’s autism, and PDD-NOS under a single rubric. However, I have access to extensive online data, including scholarly journals, through my employer, and I have conducted several literature reviews on various related subjects.
My understanding is that most scientists do not, for instance, believe that a legitimate distinction can be made between so-called “high-functioning autism” (not an actual DSM-IV-TR category) and Asperger’s. Discussions on this subject are still ongoing (in the APA), and I don’t believe that a firm decision has been made on whether to collapse the two categories into one.
However, almost all of the papers I have read agree that Asperger’s, however labeled, is a type of autism. For that reason (and others), I feel justified in using the term “Asperger’s autism.” I also feel very fortunate that, in spite of my past, I was able to obtain a Ph.D. and become a tenured college professor. Most Asperger’s autistics are not that materially successful. Some remain on disability for most of their lives.
After reading through the article, I just feel that I need more info. Can you share some more resources please?
Hi, Ted:
Do you mean resources which are available for persons on the autistic spectrum? If so, a good place to start is The Autistic Self-Advocacy Network.
Mark Foster