Sunday, February 27, 2011

Neurodiversity and Autism Advocacy

I am unsure of my emotions regarding this research project:

SpringerLink - Health Care Analysis, Online First™
HEALTH CARE ANALYSIS
DOI: 10.1007/s10728-011-0169-9

Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement
Pier Jaarsma and Stellan Welin
Neurodiversity has remained a controversial concept over the last decade. In its broadest sense the concept of neurodiversity regards atypical neurological development as a normal human difference. The neurodiversity claim contains at least two different aspects. The first aspect is that autism, among other neurological conditions, is first and foremost a natural variation. The other aspect is about conferring rights and in particular value to the neurodiversity condition, demanding recognition and acceptance. Autism can be seen as a natural variation on par with for example homosexuality. The broad version of the neurodiversity claim, covering low-functioning as well as high-functioning autism, is problematic. Only a narrow conception of neurodiversity, referring exclusively to high-functioning autists, is reasonable. We will discuss the effects of DSM categorization and the medical model for high functioning autists. After a discussion of autism as a culture we will analyze various possible strategies for the neurodiversity movement to claim extra resources for autists as members of an underprivileged culture without being labelled disabled or as having a disorder. We will discuss their vulnerable status as a group and what obligation that confers on the majority of neurotypicals.
I'm not a "neurodiversity" advocate, but I believe this research risks characterizing autistic individuals advocating for themselves as somehow "wrong" to use Civil Rights movements as models for advocacy. Why is it wrong to compare diversity with any other movement for equality? The real resistance to this idea comes from families of the more severely affected autistic children and adults. Those with severe impairments have other needs and concerns, but that doesn't mean their families can reject the calls from diversity advocates for respect.

I demand respect and acceptance for me as I am, not as others might want me to be. What's so strange about that? And I do believe autism is a naturally occurring "abnormality" that helps humanity. It is, potentially, a trait that helps the community survive. I'm not claiming that autism is desirable, but that like other things we consider "wrong" or "unhealthy" that autism has evolutionary benefits.

You might be unfamiliar with such theories, but evolutionary biologists suggest some "illnesses" and "diseases" can be beneficial in specific contexts. See the book Survival of the Sickest for some insights on this. Differences, even ones that are potentially deadly, can be beneficial to the human species.

10 comments:

  1. What does a Civil Rights model offer the lower functioning autistic?

    Why is it wrong to compare diversity with any other movement for equality?

    Because some of that "diversity" isn't good for people, especially the typical low functioning ones. Spending one's life dependent on others is no way to live and we should seek ways people can have a rich and meaningful life as much as possible. ND has nothing to offer the low functioning as I see it.

    I'm unsure why you would have ambiguous emotions about this research.

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    1. What about the older guy in loving lampposts who lives by himself and has a job, yet still needs a person to come check on him, and help him self care?

      Would he be better served in an institution, with restricted visiting hours, and unable to help provide for himself?

      That's a matter of services. That's a matter of politics. That's a matter for Neurodiversity.

      What about that hypothetical kid, the one who doesn't speak, and doesn't self care too well? His/her education is important, very important, to his/her future. That is also a matter of legislation. Both parents and Autistics want extended care for individuals like this.

      http://thautcast.com/drupal5/content/autism-education-25-not-enough

      Why CAN'T the neurodiversity movement get involved in matters like this? Actually, we do.

      http://www.change.org/petitions/judge-rotenberg-educational-center-please-stop-painful-electric-shocks-on-your-students

      This was started by Non-Autistics (who may or mayn't be pro-neurodiversity), but the response from the Autistic community and at least one other pro-neurodiversity person has been amazing.

      So you see, what we need are some commonly agreeable "I'll scratch your back and you can scratch mine at the same time" kind of dealings. I know that the metaphor is physically impossible, but if we can find a course that is consistently, always helpful to both sides, then there will be less to disagree on.

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  2. Ambivalence seems logical because teens and adults with Asperger's Syndrome or PDD-NOS diagnoses have good reason to seek acceptance and fair treatment from schools and employers -- that is a civil rights issue, one covered by ADA in workplaces and IDEA in schools.

    But, that ambivalence is a recognition that parents and support providers for those with serious impairment do not have the same perspective. I clearly admit that is the case and don't consider these to be comparable situations.

    However, the parents of the severely impaired should not dismiss the unique position of the mildly impaired. Too often, the two extremes do not recognize or respect these different needs and goals.

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  3. "However, the parents of the severely impaired should not dismiss the unique position of the mildly impaired. "

    C.S., where is your evidence that this occurs at all. If your experience is one that is high functioning, with little personal knowledge of raising a child with LFA, how can you understand these parents views and are you seeing reactionary responses to the plethora of HFA individuals asserting rights but ignoring the LFA.

    I have Asperger's Syndrome, diagnosed AS, not the kind where one takes Simon Baron Cohen's online test, but honest to god hard core AS diagnosed by a major university's autism center. I've been told by ASAN's house attorney, someone that diagnosed themselves with an ASD that I am somehow lower functioning than what is typical for AS. Yet, like you, I have a Ph.D. However, because I attend a support group, worked longer for my degrees, I am somehow lower functioning than the typical AS population.

    I started off supporting ND but changed after I saw the low standards for admission to club ND.

    I have a child with moderate autistic disorder. I'm surrounded by adults and children with autistic disorder. Autistic disorder is nothing like AS, nothing. As is typical of any movement, the ones most affected by the low quality of life are being ignored and I think that is true of all of ND. Just take a look at the Autism Hub. How many low functioning, non verbal autistic people are represented? None. Why is that? Well, because they can't.

    I don't agree with your thesis that there are two extremes. I think there is only one extreme. I was a part of that extreme for a period of time. There is no representation other than through parents for a LFA. NONE. I am a parent with AS. I see both sides. The ND side simply ignores the LFA. Their issues aren't the same. To pretend they are is not healthy and not helpful for either side. When HFA equate their situation with the LFA, then they lose credibility with the at large public, as they should. When parents of the LFA dismiss the struggle of the HFA, its most often a reactionary response to some person with HFA trying to insist they know what life as a LFA is or what is important for LFA's.

    ND is a political movement, pure and simple and it is only for the HFA. That's my opinion.

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  4. As I posted, I'm not part of any neurodiversity movement. There are, as in any movement, the radicalized members (usually the loudest) who end up causing the larger movement public relations problems, to be kind.

    However, the conflicts seem to be reaching "research" status, which troubles me. Do we really need to study the neurodiversity movement? Do we need scholarly papers on the movement?

    As the journal abstract argues, there is a problem with asking for additional resources and arguing for supports while a the same time not wanting to call autism a disability or disorder. Either it is an impairment or it isn't -- but the "ND" movement does try to have it both ways: spend money supporting us, but don't imply we need support. (Again, see the abstract posted.)

    I'm also opposed to self-diagnosis. Because I was considered "mentally retarded" from birth, my experiences are nothing like those of many of the self-diagnosed people I've met. They didn't endure the various therapies / treatments, but have "quirky" personalities. Those are different experiences, certainly. Only a handful of the self-diagnosed people have true non-verbal periods, for example.

    Those activists with diagnoses do include non-verbal or limited-verbal individuals. However, those people are constantly challenged or labeled as frauds. That's not fair, either.

    There must be ways to bridge the various groups, though I do believe the new DSM-V criteria are only going to produce more, not less conflict. The minimally impaired will be an even larger percentage of diagnosed individuals, and that will affect public perceptions and possibly public policies.

    Again, my primary complaint is that this study seems intent on creating more conflict. Though it also is reporting a problem that already exists between advocacy communities.

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  5. - And I must stress, as I do often, that I am not now, and never was, diagnosed with Asperger's Syndrome. I've only had the autism, brain trauma, and retardation diagnoses.

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  6. Best blog entry I've seen on this topic:

    http://actionforautism.co.uk/2008/06/25/autism-hub-and-neurodiversity/

    Agree or not, it is well written and thoughtful.

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  7. Personally I'd like to see the full journal article before passing final judgement. Looking at the abstract though I do think that it is at least good that debate over issues like neurodiversity is being had even though I disagree in part with what the abstract says.

    After all "truth does emerge from the clash of two opposing opinions" and there are genuine issues generated by neurodiversity as a political concept that by the way is open to interpretation and different definitions. So it is good to see at least that people are at least critically examining the concept in whatever shape or form.

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  8. CS, I don't think Stanton's piece is well written or more importantly, well informed at all and I'm familiar with it from reading it 2 years ago. I could easily dissect it and render it useless by giving clear video evidence of its detachment from reality. However, that would sort of be a useless exercise and a hijacking of your blog here. However, if you would like, I'll give you my take on why he is dead wrong and misinformed.

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  9. I don't understand the reference to video evidence.

    I don't read many blogs, unless asked to do so. I don't even read "Left Brain / Right Brain" regularly anymore. I skimmed the blog on diversity and it seemed to be a polite, reasonable defense of diversity -- though personally I'm not supportive of some self-advocates and their approaches to some issues.

    I can respect their beliefs without fully agreeing. As long as they treat others with respect, of course.

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