“I Had Asperger Syndrome. Briefly.”

An interesting Op-ed from the New York Times titled “I had Asperger Syndrome. Briefly” explores the process, and history, of asperger syndrome. Benjamin Nugent writes,

The general idea with a psychological diagnosis is that it applies when the tendencies involved inhibit a person’s ability to experience a happy, normal life. And in my case, the tendencies seemed to do just that. My high school G.P.A. would have been higher if I had been less intensely focused on books and music. If I had been well-rounded enough to attain basic competence at a few sports, I wouldn’t have provoked rage and contempt in other kids during gym and recess.

Here We Go Again: Canada Bars Family of Autistic Teen

Recently, we told you about an immigration restriction case involving a family living in Montreal. We then told you about the resolution of that case.

As evidence that the recent case was not an isolated incident, this Ottawa Citizen article describes a similar case.

Continue reading

I Hate “Special Needs”

Of course I don’t hate so called people with “special needs”; I hate the label “special needs”.  I’m no fan of other forms of “politically correct” language (for example, visually impaired, partially sighted, or people with disabilities).  But at least I can understand the motivations behind employing these terms.  The word blind (to the uninformed) connotes the complete absence of sight.  I would rather expand the widely-accepted meaning of the word blind, but I get the motivation behind introducing a term that suggests an inability to see very well without being completely blind.  Similarly, I understand the desire to want to emphasize that the physical variation isn’t the entire person.  I don’t like the way the phrase “people with disabilities” implies that the person possesses the disability rather than it being imposed by social factors, but we do wrong if we fail to acknowledge anything more about a person than the physical variation that results in disability, and “people first language” is trying to address that wrong.

That said, I can’t find worthwhile motivations behind the use of the term “special needs”, and I strongly reject the sentiment expressed by the term.  What it implies is that there is a group of people who possess a set of needs that differ from… differ from whom? From those who are normal I suppose.  What is overlooked by this attitude is the ways in which social factors (e.g., power and status) can shape needs and determine which ones get marked off as “special”.

Continue reading

Parenting, testing, disability, autism

In a recent comment on an older post of Kristina Chew’s, “Eugenics, Fear, and Pain” over at Change.org, one parent says:

I found out three days ago both of my children are positive for the PTEN mutation. There is a link between PTEN and autism. I think it’s that one in every 5 people with the mutation have autism–very strong odds. I opted for genetic testing with my son. The triple screen came back very abnormal. He had 1:6 odds of Down Syndrome. I opted out of an amnio. I’m glad I did because he did not have Down’s and I’m unsure they could have told me if he had the PTEN mutation. Since only 1 in 250,000 people have this mutation I highly doubt he would have been checked for it. I didn’t know I had the mutation until 2007 even though I had every sign there is–just no name. We did not do genetic testing with our daughter. I guess the point of this is sometimes problems exist that aren’t detected. No one is guaranteed what society sees as a “perfect” child. My daughter was placed on the PDD spectrum before her second birthday. We didn’t understand the link at the time as this was around the same time as my PTEN diagnosis. She’s so beautiful and smart. The only problem is reaching her through language sometimes but intervention is changing that. Last night she was speaking to me quickly as she does and I didn’t understand her. I slowed her down and BOOM there was meaning. It’s frustrating for her in not being able to get her point across easily but she’s making great strides.

I just cannot fathom anyone not thinking my child’s life is worth it. As someone who has been through 24 operations and 3 diagnoses of cancer by age 30, my quality of life hasn’t been the greatest. My own father once said if he had known what I would go through he wouldn’t be sure he and mom would have had me. I cannot begin to explain how painful that was. Continue reading

Pet pills, “ASD”, sexual morality, exclusion, and a fairytale

and not all five in one post, but each in its own, as I run 5 more posts from What sorts from roughly mid-2008 to early 2009.

Is your dog on Prozac?

Autism spectrum research and disability language alternatives

PZ Meyers on the enhancement of sexual morality: a modest proposal

The ethics of exclusion, the morality of abortion, and animals

A fairytale for my grandchildren

On reasonable accommodation

Here’s the beginning of a recent autobiographical post from AbnormalDiversity, where you can go if you want to read the whole thing. It tells us a lot about how universities are organized, and what our social priorities are.

OK, so I’ve found out that the midterm in my women and gender studies class requires that I write three essays during the course of the exam, and I know that it’ll be really painful to write that much by hand in a short time, especially when I’m anxious. Well, since difficulty with writing can be a feature of autistic people, and I’m registered at the university as an autistic student, shouldn’t I be able to use a computer to write my exam?

Not so fast! They can’t just take my word for it! They need a doctor’s note, which means I need to bug my Dad about making an appointment with the doctor, so that I can go and tell her what I need and she can write it down. Why is this necessary, again? My doctor doesn’t actually know what accommodations I need, she’s literally just writing down whatever I tell her, so why can’t I just tell them directly?

But anyway, we get the doctor’s appointment, a couple of weeks after I first figured out that I needed it. Then I miss it. We reschedule, and finally I’ve got a doctor’s note saying I need to use a computer for essay exams.

Cognitive Disability and its Challenge to Moral Philosophy

Readers of the blog who followed our Thinking in Action series of blog posts on the above-named conference, held in New York in September 2008, as well as others, might be interested in having a look at the finished papers from that conference. They have now been published in a special issue of the journal Metaphilosophy (which strikes me, at least, as a strange venue). The table of contents is below and from here you can link to the abstracts for each of the papers; for the full versions, you need an individual or institutional subscription, it seems. To see some videoclips from the conference, together with critical commentary, check out the Thinking in Action posts themselves; nearly all of these directly discuss the talks at the conference corresponding to some of the papers listed below. The videos are both closed captioned and have transcripts with them to enhance accessibility.

thanks to shortintro for the blog comment that drew this to our attention.

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ARTICLES

INTRODUCTION: RETHINKING PHILOSOPHICAL PRESUMPTIONS IN LIGHT OF COGNITIVE DISABILITY (p 307-330)
LICIA CARLSON, EVA FEDER KITTAY
Published Online: Sep 18 2009 11:37AM
DOI: 10.1111/j.1467-9973.2009.01609.x

Abstract | References | Full Text: HTML, PDF (Size: 161K)
Save Article Continue reading

Kristina Chew on Eugenics, Fear and Pain

Kristina Chew on autism at change.org, writing in response to her son Charlie’s new neurologist’s request for genetic testing, in a post that begins:

The new neurologist has requested that my son have some genetic testing done, specifically for the PTEN and MECP2 genes, both of which have been connected to autism (and the latter to Rett Syndrome). Which means, there’s been some evidence linking these genes to individuals on the spectrum, but nothing definitive.

Here’s my comment: I’m sure that your neurologist will have an interesting response to the question: what’s the point FOR CHARLIE of genetic testing? Continue reading

An “Outbreak” of Autism?

The New York Times reported yesterday on an ongoing epidemiological survey into a clustering of autism cases among Somali families in Minnesota.  Given such a clustering there are a number of possibilities that might be true, among them:

  1. It is a statistical fluke.
  2. It is the result of misplaced pattern recognition, similar to seeing faces in clouds or patterns in the bombs dropped on London in WWII.
  3. There really is a significant statistical difference among Minnesotan Somali families.

Of course figuring out which of these is really the case will certainly not be easy for the investigators.  As the article points out, the process of diagnosing autism is less that ideal and since there is no known cause the investigation cannot be as targeted as anyone might hope.  Additional complexities, like the involvement of anti-vaccine advocates and the possibilities of racially biased diagnoses further muddy the waters.

If you would like to read the article, you can find it here.

If you are interested in reading more about what is being seen by some as an “autism epidemic” then you might also want to look here.

Think Differently About Autism

From the National Autistic Society, in the UK, a short video on bullying, Asperger Syndrome, and what it’s like; h/t to Asperger Square 8. The video forms part of the NAS’s I Exist and Think Differently about Autism campaigns, which have been ongoing for the past year or so.

Description of video, partial transcript, and further information and links beneath the fold. Continue reading

We stand for …

This is a great video created by DeedeeMom, and shown on his YouTube channel. It was created for the YouTube “What do you stand for?” competition in 2007.

The video is short; it has music in the background but no talking and all the text is fully displayed. The text in the video reads: Continue reading

Ian Hacking’s critique of the Theory-of-Mind-deficit theory of autism

[This post is the eleventh in our series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September. You can go to the Thinking in Action 10 pack, which links to the first 10 posts in the series; and the posts run Tuesdays and Fridays, for the most part. The post below concerns talks by Ian Hacking and Victoria McGeer on theory of mind and autism at the conference.]

Background:

Theory of Mind and its deficit:

“Theory of Mind” (ToM) is a philosophical interpretation of a certain kind of cognitive psychology. The idea is based on what has been called folk psychology. This describes our ordinary understanding of each others’ behavior as analogous to a scientific psychological theory. Each individual’s own folk ToM hypothesizes that other people have unobservable (to the observer) intentions, beliefs, and desires. These hypothesized mental states are seen as analogous to theoretical conjectures in science. On this notion, we begin in childhood to construct a theory of mind about other people, and we elaborate that theory as we develop and mature. An underlying assumption is the double-edged notion that A) human behavior is based on (perhaps caused by) internal, language-like inferential structures in the brain (e.g. beliefs and desires), and B) we hypothesize (in our ToM) that other humans have the same kind of language-like structures that we ourselves use in reasoning about the world.

cartoon illustration of Theory of Mind; you hypothesize the cartoon character's innards

Beginning of a cartoon illustration of Theory of Mind; you hypothesize the cartoon character's innards

[To observe ToM for the above cartoon click here. Watch right away — on some browsers it only runs once. Your “theory” is about why the cartoon character is going downtown.]

ToM-deficit as a theory of autism:

Psychologists Simon Baron-Cohen, Uta Frith and others built a theory of autism based on the ToM notion of cognitive psychology. People on the autistic spectrum often have difficulties interpreting the behavior of neurotypicals. For example, autistic children fail at certain “pretend” tasks at a later age than neurotypical children (especially tasks involving deception). These difficulties are said to be caused by a failure in the autistic children’s ToM process, which autistic children learn at a later stage than neurotypical people, and possibly never learn at all.

Hacking’s alternative:

Hacking rejects ToM in general, not only in the ToM-deficit theory of autism. He replaces it with a Wittgensteinian Form-of-Life (FoL) theory of language and social knowledge. On this view, language and social interaction is a norm-based practice, and such practices cannot be analyzed in terms of internal, language-like “theories” about the domain governed by the norms. Practices cannot be reduced to theories; you cannot learn to rollerskate by reading a book. The ToM notion that we infer people’s intentions based their behavior is a mistake (says Hacking); we intuitively and directly see people’s intentions. He callse these intuitive “seeings” of mentality are “Köhler phenomena” (after the Gestalt psychologist who, Hacking says, inspired Wittgenstein). The intuitive skills of neurotypicals are falsely described by ToM, and so autistics are falsely described as having a deficit of ToM.

Autistic Narratives:

Hacking proposes that the autistic narratives may actually contribute be constituting (rather than merely describing) the nature of autistic experience. This is especially true of reports of pre-linguistic experience that many autism narratives report — experience that which occurred before the autistic individuals (who wrote the narratives) had achieved linguistic communication. This final claim relates to Hacking’s earlier studies of fugue states and multiple personality conditions. These psychological conditions were, in part, constituted by the ways in which people decided to describe them. This is Hacking’s version of social constructionism, which avoids some of the epistemological relativism that accompanies other versions of constructionism. Continue reading

NYT on DSM-V

A few snippets from Benedict Carey’s recent New York Times article Psychiatrists Revise the Book of Human Troubles on the ongoing revisions to the Diagnostic and Statistical Manual of Mental Disorders, expected to be published in 2012:

Is compulsive shopping a mental problem? Do children who continually recoil from sights and sounds suffer from sensory problems — or just need extra attention? Should a fetish be considered a mental disorder, as many now are? Panels of psychiatrists are hashing out just such questions, and their answers — to be published in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders — will have consequences for insurance reimbursement, research and individuals’ psychological identity for years to come. The process has become such a contentious social and scientific exercise that for the first time the book’s publisher, the American Psychiatric Association, has required its contributors to sign a nondisclosure agreement.

You can read the whole article right here.

NY Times article: This Journey Began Before Starting Line

Photo of Nadine McNeil embracing her 18-year-old son, Tyler.  Nadine McNeil will compete in her fourth marathon, but it will be the first for Tyler.  Photo by Rob Bennett for the New York Times

By CHARLES WILSON

Published: October 31, 2008

Nadine McNeil will reach the crest of the Verrazano-Narrows Bridge on her handcycle soon after 7:30 Sunday morning. Moments later, she will roll swiftly past her 18-year-old son, Tyler, who is autistic. This will be her fourth marathon, and Tyler’s first. She has grown uneasy this week thinking of the moment when she will leave him behind.  “I can’t look back,” she said. “For 18 years, I’ve always known every moment where Tyler is. On Sunday, I won’t.”

Though joint parent-child appearances in the New York City Marathon are not uncommon — Rod Dixon, the race’s 1983 champion, is returning this year to run the race with his daughter — the path that brought Nadine, 42, and Tyler to the marathon is an unlikely one. Nadine had a stroke when she was 8 and lost the use of her right arm and her right leg. Tyler, her only child, is severely speech-delayed. Even now at 6 feet 4 inches, he communicates verbally by using one or two words at a time.

Nadine has poured her life into her son. Tyler, in turn, is what she calls “my right arm.” He compensates for her disabilities by tying her shoes. He does her buttons and zippers. If she tries to put on her coat, he will immediately rush to her side and gently lift her right arm into the sleeve.  Neither would have ever made it to this year’s starting line without the other.  Read the entire article here: http://www.nytimes.com/2008/11/01/sports/othersports/01marathon.html?th&emc=th

Positively Autistic

Autism Awareness icon

Autism Awareness icon

CBC News has just run a special, Postively Autistic, that many will find of interest–the link to the site is beneath the fold below as well as a transcript. The video runs 19 minutes, and features Amanda Baggs, Ari Ne’eman, and Michelle Dawson, amongst others. The site for the special also contains a lot of other information. General drift: representation of autism as a positive human variation that stands in need of social acceptance, and links this view to the disability rights movement and the idea of neurodiversity. It’s a bit more choppy than I would have liked, and has very articulate autistics (like Baggs and Ne’eman) speaking for auties as a whole. Maybe this is a good way to start with introducing the idea of autism as a form of natural human variation, but we might push further and represent more of this variation, some of which folks will find more disturbing. (Here having Dawson in here is a bonus, since while she’s incredibly articulate, she also conveys a few more clues about the kind of variation one might find on the spectrum. Sadly, there’s not an extra piece on her, only on Laurent Mottron, whom she works with in Montreal, on the CBC website. I suspect that was a personal choice of Dawson’s.)

To be sure, this is not a way of saying Continue reading

CFP: Special Issue of Disability Studies Quarterly on Autism

Submission deadline: Jan. 1 2009
Projected publication date: Summer 2010

Co-editors: Emily Thornton Savarese, University of Iowa, and Ralph James Savarese, Grinnell College

We are looking for completed articles, from a disability studies perspective, on what the medical community refers to as ASD (Autism Spectrum Disorder). We are especially interested in pieces that engage the so-called “low-functioning” end of the spectrum, where increasingly those presumed retarded and lacking social awareness are writing back to the empire of science. As the field of disability studies has theorized cognitive difference, it has had to refine its cherished social-constructionist approach, making sure to account for physiological distinctiveness in the organ of sensibility, a distinctiveness that has been interpreted in a myriad of ways, most quite prejudicial. We are interested in the burgeoning neurodiversity movement, which has self-consciously resisted such prejudicial interpretations, often revealing the “science” of autism to be anything but reliable and objective. How to talk about autistic difference? How to represent it? How to convey its gifts and challenges? Who can talk about it? What role should parents play in this representational arena? What role should teachers, doctors, researchers, therapists, media entities, and academics play? What kind of interdisciplinary approaches are needed to understand, respect, and even cherish autism? Continue reading

Victims of Violence with Autism

Recent murders, violence, and abuse of children and adults with autism or Asperger syndrome are an incredibly disturbing trend. The following cases are only a sample of the many cases reported within the last month:

19 September 2008 – Margate, FL, USA NBC6 News reports that two men were arrested in connection with a sexual assault of “an autistic girl.” Continue reading

Posts on Cognitive Disability: A Challenge to Moral Philosophy

If anyone has any reactions to talks they’ve heard at the Cognitive Disability conference in NYC sponsored by SUNY Stony Brook and run by Eva Kittay and Licia Carlson that has just finished, please post away, either as a comment here (anyone) or in your own post (if you’re a What Sorts blogger). Kristina’s link to her Autism Vox post on Ian Hacking’s talk is a start.