How is self-advocacy affecting the word "autistic" and perceptions of what autism is? I debated myself about posting this. However, it is part of the book draft I am preparing to release and I consider it an important discussion to have. I know someone won't like what I've written, but maybe it can get people thinking about language.
Autistic vs. with Autism
Self-identity is part of how we build relationships and connections. An important development over the last decade is the rise of self-described “autistic activists” as a community. However, this has also caused tension.
One of the many heated debates within autism communities is the proper term to use for individuals with autism spectrum disorders. I use a variety of constructs in this book. This isn’t part of an agenda. No matter which term I use, I realize someone will be offended. “Autistic” has the advantage of recognizing that autism is technically a descriptive label without an identified cause. We know that autistic traits are used for diagnoses, but we have yet to discover what causes autism.
Personally, I don’t have a problem with “autistic adult” or “adult with autism.” My autism diagnosis is like having blue eyes. I am both a “blue-eyed adult” and an “adult with blue eyes.”
“But autism is serious, not like eye color!” some might protest.
Okay, but that doesn’t tell me which linguistic construct is better. The deaf community hasn’t agreed on a preference either. Some deaf individuals would rather be called individuals with deafness. There are even cure vs. non-cure debates within the deaf community. Some argue deafness is merely a trait, one that can be changed in some cases, while others consider it inherently a part of their identity. In the deaf community, how you refer to yourself is affected by your position on medical treatments for hearing impairment. Let’s just agree that you can describe yourself as you prefer, as long as it is reasonably clear and accurate.
This lexical debate is trumped by a logomachy of serious importance to many advocates, activists, clinicians, and researchers. Should we use “autism” to describe everyone diagnosed with an autism spectrum disorder? Some families of individuals with serious impairments insist “autism” or “autistic” should only be used when referring to classic autism. I understand this point of view, and sympathize with families who feel their needs are minimized by the inclusion of those, like myself, who are capable of independent living.
Further complicating the matter, some autistic activists are troubled by phrases like “severely impaired” or “low-functioning.” There is an entire academic discipline dedicated known as “Disability Studies” aligned with the “Rhetoric of Disability.” The debates about language and disability (including the word “disabled”) fill countless volumes.
I’ve come to accept that someone will be offended no matter what language I use. Sincerely, I do attempt to minimize the potential for conflicts by disclosing my background and stating, without hesitation, that the parents of individuals with classic autism do have unique concerns. I intend absolutely no offense by using the term “autism” as shorthand for the entire spectrum.
I look forward to reading your book. I find you very reasonable and in many ways open to new thoughts and not dogma centered. With that in mind, I've taken the liberty of adding a qualifier to the end of your sentence and ask your feelings about it.
ReplyDelete"Let’s just agree that you can describe yourself as you prefer, as long as it is reasonably clear and accurate, including if you diagnosed yourself.
That would be the only change I would make.
Self-diangosis is a complex debate, one I tend to avoid as a researcher since I cannot include self-diagnosed individuals in any research projects. I understand self-diagnosis helps some people, but I am limited by both legal and ethical constraints within a university.
ReplyDeleteI'm not sure how to deal with that in a text for which final version approval is likely to involve an academic committee. In past research, I was restricted to interviewing those who could document a diagnosis by the university IRB, which is a reasonable requirement since it implies a standardization of terminology.
I imagine someone self-diagnosed would still learn something from reading the text, even if I do not address self-diagnosis.
I do notice self-diagnosis is a much greater issue with the autism community than almost any other group, including ADD/ADHD support groups. I wonder why this is the case. Maybe that's a research topic?
This is a conversation researchers will need to have in coming years.
I introduce my lectures with a Zen Koan, and then go on to say that Autism is an ism as Buddhism is an ism.
ReplyDeleteAnd believe you me grasshopper, there is a Tao of Autism too :)
I am as I have said before an Autist before they took the R out.
Well I managed once again to get Kent's knickers in a twist when I declared the following which is worth repeating because it is true:
There are three autisms.
The first is a neurological hotchpotch of differences
The second is the individual’s interface with whatever social structures are currently in place
The third is the whole social discourse around the other two.
It’s actually the third of those which is most disabling, because that is the one that decides whether you have human worth or not.
Yeah Kent they said the same about Ian Dury when he declared himself to be "Spasticus Autisticus" http://www.youtube.com/watch?v=LSo9OErEmM4 the pusillanimous public missed the entire joke, disabled people got it right away.
I refer you to the theme of this years Autscape "who owns autism" who does? Not the effing clinicians or the politicians, we do!!!
Yes all of us, including those whom the "Aspergians" would love to disown.
I am not only autistic I am a neurodivertista, viva la revolucion :)
@Author
ReplyDeleteWho or what is Kent? (Kent State? Kent County?) What is an Aspergian versus an aspie or an autie? None that has ever quite registered with me. Can't say I'll ever understand, not if I haven't after many years.
The notion of "ownership" of autism is also confounding. It's a word, with a clinical definition. The only words "owned" are copyrighted fake words registered with a government -- and I think that concept is absurdly funny.
I'm definitely more lost after reading that response. I'm left feeling disconnected, which isn't unusual for me. Makes me wish human languages were more like computer code.
"There are three autisms.
ReplyDeleteThe first is a neurological hotchpotch of differences
The second is the individual’s interface with whatever social structures are currently in place
The third is the whole social discourse around the other two."
Which one of your three autisms is this one Larry:
http://www.youtube.com/watch?v=JTG9O3em-rU
This is a common autism in my world. I wouldn't refer to them as hotchpotch, but very homogeneous. The fact that they are very homogeneous and our district has a few hundred of them means that this is not at all as vague as to call it a hotchpotch of autism.
This type of rhetoric CS is what I see all the time from some so called self advocates. A seemingly, to me at least, ugly, narrow, dismissive, sinister, and ignorant reaction to the real challenges faced by the LFA.
Until we all say "I see you" and address it on a local and personal level, we are bound to remain imprisoned in our walled garden of "disability studies."
That video is a very common presentation of an adult with classic autism in my experience. I'm surrounded by autistics like this along with the higher functioning ones like you and me in my support group.
Part of the problem for any paper, any book is to present all sides honestly because there is simply too much dogma surrounding ASD. If you can accomplish that, you will really have accomplished something.
I "see" Larry, I "see" you, I "see" me, but I also "see" them. The three of us have little in common with "them" and should make sure we always convey that we don't when we are speaking and writing as an "autistic".
I have seen some change in the self advocacy movement over the last couple of years, but there are some real "dead enders" still out there that may never acknowledge the LFA with the same fearless advocacy as the HFA.
You need a degree in Meeja studies before the true majesty of the concept of "ownership" can be appreciated. It's very similar concept and discourse found in Scientology's Operating Thetan concept (OT III-VI).
ReplyDeleteIn so many ways.
For example, Scientology is very much at one with the idea that mental problems are a construct of psychiatry and society.
And that by pure mental effort (& $63,000) one can create all manner of glorious multi-factorial conceptions at the same time as expelling Xenu's renegades (ie mental and psychological discontinuities typically manifesting as BatShitCrazyNess in normal, paranormal and anormal individuals.
At this point in any discussion of this type, one should bring to mind Kant's fine words
“A categorical imperative would be one which represented an action as objectively necessary in itself, without reference to any other purpose.”
When one considers this in light of his later statement
“All the interests of my reason, speculative as well as practical, combine in the three following questions: 1. What can I know? 2. What ought I to do? 3. What may I hope?”
it would seem that Mr Rex is a very hopeful boy indeed. Or as the Germans would say
“Faith tötet alle Vernunft”
Author, I invite you to read the article "Autism's First Child in the Atlantic http://bit.ly/i4DNuv
ReplyDeleteI actually invite everybody to read this article.
@Kellee
ReplyDeleteAh but I have.
@ Anonymous "hotchpotch" may have been a bad of choice of word there, but there you see the whole traitor notion of language, on person sees in a word something other than the author intended by it simply because they have a different set of experiences.
The third autism of my set is the discourse that choses to construct me with ad hominem arguments because those who are in it have not been what I have been or seen what I have seen, so they only suppose in a way they want to, and make me and anyone else only what fits with the schema they find the least unsettling to there own world view
Was Zum Teufel nah what I mean 'arry if you don't own autism then you might as well not own a claim to be human at all, because all of the other discourse is dehumanizing devaluing and ultimately destroying us, all of us, all.
ReplyDelete@CS fortunately I am allowed to address the topic of self diagnosis in my research, still unsure whether I have anything conclusive to say about it however, the data will lead where it will.
ReplyDeleteOwnership
ReplyDeleteOne does not "own" the word, one "owns" the concept, the discourse that is carried with and by it, one is then not colonised by others who would say in there saying what you are, also with that what you should be, and when you believe that false premise of what they say you are and what you are not because you should be (according to them) something else then you are well and truly owned, false consciousness as the Marxists would say or self oppression, Stockholm syndrome or whatever ....
I am very glad I am not a humanities theorist. It would take a year or more for me to break down some of replies, and I'm certain I would not comprehend them even then. The moment someone starts talking about things I can't ponder, I'm lost. And, according to plenty of supposed experts, my inability to ponder these things makes me less than human. I've never passed a single "Theory of Mind" test. Oh, well.
ReplyDeleteLinguistic-based philosophy seems to a Anglo-American tradition, and I'll allow those departments of philosophy and rhetoric that wish to claim it to do so. It is definitely outside my comprehension.
I like computers and cats. People are too confusing most days.
Oh well!
ReplyDeletehttp://www.youtube.com/watch?v=KE4HGlmtOcg
And if you think Peter Green was/is neurotypical then there are few spanners lost from the toolbox there.
Thee and I, somewhere lost in what can only be described by highly complex mathematical formulae, words notwithstanding. Clouds clashing and merging in Hilbert Space