Saturday, March 21, 2009

Racial and Class Aspects of Homebirth

Via Feministing, I found this thought-provoking article by Miriam PĂ©rez (who blogs at RH Reality Check, Feministing and Radical Doula) about additional barriers to safe, midwife/doula-assisted homebirth poor women and women of color face.

Some of those barriers are:

Lack of insurance coverage
"I work in a (very) low-income Medicaid clinic in Sacramento [California], and the women all have Medicaid or Family Pact as insurance," [Certified Professional Midwife JayVon] Muhammad explains. "Medicaid doesn't cover homebirth, so even if women choose to have homebirth, they are not covered, leaving no choice at all. As a result, when women show an interest, and very few do, they don't have a choice. They are forced (due to lack of money, and insurance) to deliver in the hospital."
Documentation worries
In recent years, particularly since 9/11, obtaining passports and other citizenship documentation has become increasingly difficult. The crackdown has focused on people born to midwives at home. Immigration authorities have begun questioning the validity of documents from these midwives and holding these individuals to a much higher burden of proof. This has had a disproportionate impact on Latinos and other immigrants, requiring them to go to great lengths to obtain passports and other documentation. [Washington, D.C. doula] Claudia Booker thinks this fear of citizenship being questioned may keep low-income people from leaving the hospital to give birth.
Lack of awareness
Doulas and midwives who work in low-income communities of color see the barriers as being social in addition to financial.
"My clients don't know a thing about homebirth, nor do they understand why they would even consider such a thing," explains Muhammad. "They are not educated about the benefits of birthing out of the hospital or birthing without interventions."

Experience of homebirth as something done because there was no other choice
Claudia Booker ... explains that women in low-income communities of color stopped giving birth outside of hospitals at least three generations ago. There is also a sense, she noted, that giving birth at home is "what poor people do and [that homebirth] was something we did because we had no option." This history reflects a larger transition among US women giving birth at home to hospital birth, which happened in the 1920s. Low-income communities, and particularly African-American ones, took longer to make this transition because of poverty, racism and lack of access to hospitals.
While for well-off white women, giving birth at home might sound like a way to take control over one's own pregnancy and delivery, and secure more choices, to poor women of color it could just as easily look like a loss of those choices they have only recently gained.

As one of the commenters points out, this reflects a "two-tiered system of giving birth in America." Of course, our entire health-care system is multi-tiered, with only the top tier providing anywhere near the level of care people need.

Read the whole thing!

Wednesday, March 18, 2009

Somali Autism-Cluster Scare Has Worrisome Fallout

In my last post, I focused on the technical details of disease clusters, how they are studied, and the particulars of the autism clusters in Stockholm and Minneapolis. Now, with this post, I'd like to concentrate on some of the more human aspects of these stories.

Autism is not very well-understood by anybody, but it's an especially foreign concept to a lot of the Somali immigrant families profiled in the news stories.

[M]any Somali parents are baffled and scared.

"It's beyond denial," said Hassan Samantar, a parent advocate at the Pacer Center for disabled children. "There was no word for this in Somali. We've seen Down syndrome and schizophrenia, but loosely termed --- our word is more like 'crazy.' People are calling it 'otismo' or 'the American disease.' And some are saying it's something you did or something your parents did, and the curse is catching up with you."

Many Somali parents here do not read English or watch American television, he said, so they first hear of autism only when a pediatrician suggests testing a child.
Because neither autism in general nor the unusually high prevalence of autism in some immigrant communities has yet been very well explained --- there are many competing, potentially overlapping hypotheses of how autism develops, with only part of the picture filled in with any confidence --- there's a gap in the public discourse about autism that certain less-than-scrupulous parties are eager to step in and fill.

Antivaccine activists are campaigning among [Somali immigrants in Minneapolis], which worries public health officials, especially because some families go back and forth to Somalia, where measles is still a significant cause of childhood death, according to Unicef.
In November, J. B. Handley, a founder of Generation Rescue, which advocates treating autistic children with wheat- and dairy-free diets, vitamins and chelation to remove mercury, wrote an open letter to "Courageous Somali Parents."

He warned them not to trust the state health department and suggested they slow down their children's shots and get exemptions to school vaccination requirements. He also offered to pay for some to attend an antivaccine conference.

The appeal has had an effect. Many parents, including Ayub's, now say their children's autism began after seizures that started after they got shots.
(As an aside, I'd like to point out how misleading it is for the Times to list a highly dangerous procedure like chelation alongside relatively benign alternative therapies like vitamins and special diets. Vitamins and special diets might not do much, but people don't die from them).

Fear of vaccination is also growing more common among Somalis in Stockholm:

Idiopathic autism is a challenging condition for parents. Along with genetic aspects, several other explanations have been discussed, including the influence of diet, intestinal inflammation, and vaccination. In a geographical area of Stockholm, with a relatively large Somali immigrant population, many parents of Somali children have refrained from letting their child be given the measles, mumps and rubella (MMR) vaccine because of the controversial (and now refuted) link between MMR vaccination and autism. In that specific area of Stockholm, vaccination frequency was 69.5% in 2005, and 71% in 2006, in comparison to about 95% in most other areas in Stockholm. In this area in the northwestern part of Stockholm, parental concern about the risk of vaccination coincides with concerns from teachers and autism assessment teams about a seemingly higher than expected proportion of Somali children having autism.
(Quoted from the Introduction of Barnevik-Olsson, Gillberg and Fernell, 2008).

While the solitary crank who refuses to vaccinate has been annoying people as long as vaccines have existed, it's more worrying when groups of people refuse to vaccinate. For one person, or a few who are isolated from each other, they can at least get by with herd immunity and never even come into contact with the pathogen. But if you have an enclave of people without immunity, you run the risk that the disease might become endemic among them.

These Somali immigrant communities are at an additional risk because of the frequency of trips made to and from Somalia, where measles is still common.

In a climate of fear, people look for certainty. The lack of clear, easy answers about autism from the scientific community has driven many of the more fearful parents into the arms of people who do have easy answers, even when those answers are false and potentially very dangerous.

Both the purveyors of deceptively simple answers and those in the media who create that climate of fear are wrong.

Tuesday, March 17, 2009

Autism in Somali Immigrant Communities: Epidemic, Coincidence or Genetic Pattern?

EXECUTIVE SUMMARY: Health-care and special-education professionals in the city of Minneapolis, Minnesota are noticing what they think is an unusually high proportion of severely autistic children within Minneapolis's Somali immigrant community. The Minnesota Department of Health is looking into it, trying to determine whether there really is a higher rate of autism prevalence among Somalis in Minneapolis.

A similar study was done last year in Sweden, looking at autism prevalence among Somali immigrants in Stockholm. While that study did find an elevated rate of diagnosed ASDs among Somali children, the group of Somali children with autism diagnoses was so small (seventeen individuals) that the finding of increased autism prevalence should not be taken very seriously.

Both the Swedish study and the planned Minnesota study involve looking at special-education statistics for their estimates of how many children --- both in the general population and within the Somali immigrant population --- have autism diagnoses. There are several problems with these data, particularly in Minneapolis, whose autism programs are open to all Minnesotans and thus can be expected to draw people from all over the state.

ResearchBlogging.orgVia the What Sorts of People? blog, I found this New York Times article about a possible "autism cluster" in the Somali community of Minneapolis, Minnesota.

What is an autism cluster?

A "cluster" is an unusual aggregation, real or perceived, of health events that are grouped together in time and space and that is reported to a public health department (CDC 1990). Several breakthroughs and triumphs in infectious disease control have resulted from the epidemiologic evaluation of clusters of cases.
Investigations of noninfectious disease clusters have also resulted in notable examples of breakthroughs linking a particular health effect to an exposure, such as angiosarcoma among vinyl chloride workers (Waxweiler et al. 1976), neurotoxicity and infertility among kepone workers (Cannon et al. 1978), dermatitis and skin cancer among people wearing radioactively contaminated gold rings (Baptiste et al. 1984), adenocarcinoma of the vagina and maternal consumption of diethylstilbestrol (Herbst et al. 1971) and phocomelia and consumption of thalidomide (McBride 1961).
Whenever a cluster of a noninfectious disease occurs, questions arise as to what could have caused it:
While there is little research on autism clusters, reports of cancer clusters are so common that health agencies across the country respond to more than 1,000 inquiries about suspected ones each year. A vast majority prove unfounded, and even when one is confirmed, the cause is seldom ascertained, as it was for Kaposi's sarcoma among gay men and mesothelioma among asbestos workers [or any of the conditions listed in the above quotation].

It is "extraordinarily difficult" to separate chance clusters from those in which everyone was exposed to the same carcinogen, said Dr. Michael J. Thun, the American Cancer Society's vice president for epidemiology.

Since the cause of autism is unknown, the authorities in Minnesota say it is hard to know even what to investigate.

According to the "Autism and the Somali Community" page on the Minnesota Department of Health website, the MDH is currently analyzing data on Somali children in the Minneapolis Autism Program, and will release a report on its findings on April 1*.

Until then, we've still got a similar study of the prevalence of autism in the children of Somali immigrants in Stockholm, Sweden. The methods this study's authors (Dr. Martina Barnevik-Olsson, Dr. Christopher Gillberg** and Dr. Elisabeth Fernell) used were quite similar: as the MDH plans to do, Olsson, Gillberg and Fernell reviewed records of all Somali children (either Somali-born, or children of Somali-born parent/s) diagnosed with an autism spectrum disorder and enrolled in autism support programs, determining the prevalence of autism both within the Somali community and in the larger city, and also trying to identify any common factors in the children's medical histories.

The Swedish study did find an elevated prevalence rate among the Somalis of Stockholm: Somali children were about three or four times as likely as non-Somali children to have a diagnosis of autism or PDD-NOS. (Prevalence rates for these groups were 0.7% and 0.19%, respectively).

Unfortunately, the group of Somali children diagnosed with an ASD was made up of only seventeen people. Those seventeen, as a percentage of the 2,437 Somali children living in Stockholm, represented a bigger chunk of their demographic than the 484 autistic children not of Somali descent did, but with smaller numbers percentages get less reliable.

The study's authors acknowledge this, and also one other potential weakness of their study's design (one the Minneapolis study will probably share):

One limitation of this study is the retrospective collection of data, relying on clinical notes that had not been intended for research. Only the autistic disorder or PDDNOS diagnoses for the Somali children were checked and reconfirmed. The data are therefore not complete and must be seen as preliminary.
There were some interesting things they found out, however preliminary and unconfirmed:
Our clinical impression is that this group of Somali children constitutes a rather homogeneous group in the autism spectrum with regard to four characteristics: (1) the age at which the developmental deviation was noted (12-24 mo.); (2) the presence of a definite intellectual impairment in all 17 individuals, mostly of a moderate to severe degree; (3) the fact that motor function was not impaired, except in one child; and (4) the fact that the activity level was exceptionally raised in the vast majority of the children.
All individuals had learning disability. This is a developmental disorder in which genetic background factors have a prominent role. Recessive inheritance has been especially demonstrated in severe learning disability. In many parts of the world, especially the Islamic countries[***], marriages between close relatives are common. In a previous study from Stockholm county, covering a population with a high rate of non-European/non-North American immigrants, the prevalence of severe learning disability was found to be 3.7 and 5.9 per 1,000 respectively, in the European and in the non-European population.

The clinical profile shared by the seventeen Somali children in the Swedish study --- particularly the predominance of learning disability and intellectual impairment --- also seems to show up in the Minnesotan children.

From a article:

About a quarter of all autism [sic] children who attend autism classrooms for students functioning too low to be mainstreamed in regular schoolrooms are Somali. Special education specialists said that indicates that the degree of autism Somali children are developing is on the severe end of the autism spectrum.

"I'm not seeing Aspergers syndrome and the full spectrum of autism in Somali children. It is the more classic forms of autism in general; it is the more severe forms of autism that we're seeing in our Somali babies that are born here," said Anne Harrington, early childhood special education coordinator for the Minneapolis district and a specialist on the topic.

And from the Times story:

In the last decade, [Harrington] said, "we've begun seeing a tremendous number of kids born here who have the most severe forms of autism."
"They had classic symptoms," [pediatrician Dr. Daniel S. McLellan] said. "Really impaired language, didn't watch faces, didn't make eye contact, didn't communicate with gestures, just lost in their own worlds. Nobody would mistake it for anything else."

While the Minneapolis Somali community is likely to be larger than its Stockholm counterpart (a conservative estimate from the State of Minnesota puts the number of Somalis living in the state at 14,000-15,000, with most of them living in Minneapolis), there are some other problems likely to emerge with the special-education statistics.

From a news story published last September by the Simons Foundation Autism Research Initiative:

Epidemiologists are generally skeptical of disease clusters, and this one is no exception.

"Those numbers [referring to an earlier finding that Somali children make up 6% of Minneapolis schoolchildren and 17% of its special-ed students designated autistic] are strikingly different, but it's not really an appropriate comparison," says Judy Punyko, an epidemiologist at the Minnesota Department of Health.

The Minneapolis statistics include only children from certain age groups and only those attending public schools, Punyko notes. What's more, Minneapolis autism programs have an open-enrollment policy, meaning they often accept children from other school districts, potentially skewing the prevalence numbers for the district. "I want to get the real numbers and understand these numbers before we move on," Punyko says.

In August, Punyko created a study group of 12 experts --- including epidemiologists, physicians, school administrators and special education teachers --- to compare the autism prevalence across all Somali children in the city with age-matched controls.

Even then, she adds, educational data may be incomplete or inaccurate. The 13 special-education categories reported to the state and federal government are intended to help provide a child with the best available educational services. If a child has two conditions, such as autism and developmental delay, they can only be assigned to one primary category; Minnesota does not require a medical diagnosis of autism to be included in the category. Finally, some schools, especially those in the poorer districts, often overlook milder forms of autism.
So, like the Swedish researchers, the Minneapolis researchers will have to deal with data that probably weren't collected with the same level of rigor they'd normally use to collect epidemiological data. I also suspect that those poorer school districts probably house a lot of Somali immigrant families, which, given the tendency of those districts not to notice "milder" autism, would make the above-cited observation about Somali "clusters" having a disproportionate share of severely autistic children a self-fulfilling prophecy.

*Yes, April Fool's Day. I don't think there's much of a chance of this being a big practical joke, but I am always a bit leery of papers published on April Fool's Day.

**Gillberg's name was already familiar to me, as he's done a lot in the field of autism research, but one thing I hadn't known before Googling him was that he'd proposed a set of diagnostic criteria for Asperger syndrome. They're not the criteria the DSM currently uses, but apparently they're quite faithful to Asperger's original descriptions.

***I'm going to interject here that "the Islamic countries" is a very unhelpful geographic category. Is he aware of just how many countries, in how many different parts of the world, have a lot of Muslims in them? It makes about as much sense as talking about "the Christian countries" --- you could be speaking of Europe, Australia, the Phillippines, Central America, South America, North America, and also large swathes of south and central Africa! Similarly, "the Islamic countries" include huge areas of Asia (all of the Middle East, and much of south and central Asia), Africa, parts of Europe, and Indonesia.

Barnevik-Olsson M, Gillberg C, & Fernell E (2008). Prevalence of autism in children born to Somali parents living in Sweden: a brief report. Developmental medicine and child neurology, 50 (8), 598-601 PMID: 18754897

Sunday, March 15, 2009

This Is Cool

Apparently the Coterie Theatre (a children's theater in Kansas City) is putting on a play about a character who is different from other children and, try as he might, can't quite fit in.

From the "Resource Guide" on the play's webpage:
From the playwright: "Atypical Boy is a cautionary tale of a world that presents a comic anti-model of behavior. It is not intended to be realistic." The title character lives in a far away land where conformity is compulsory. Boy cannot conform. Others make desperately silly attempts to fix him, but neither they nor he can change his differences.

Labeled a "monster" by the others, Boy finds himself alone and disenfranchised in a world filled with monsters. In his exile Boy clashes with Hugo, ruled by his outrageous monster side, and is drawn to Girl, who struggles to remain human. At a point near the end of the play, the action will stop at the most unresolved point, and a 10 to 15 minute interactive forum will take place. At this point the audience can give the stage characters advice.
This Playbill News story reveals that Atypical Boy was commissioned by the Jim Eisenreich Foundation for Children with Tourette Syndrome, with the idea that it might help raise awareness of "complex issues concerning people living with invisible disabilities":
"While Atypical Boy does not mention TS or any specific disability, it uniquely addresses issues about acceptance, how we treat others, and forming relationships in an entertaining and thought provoking manner," said Jim Eisenreich, foundation founder and former Major League baseball player. "My hope is that every person who attends the play, whether they have a condition like TS or not, considers how our actions and words can both hurt and heal."
Though the play sticks to general themes, I did spot a few things in the stories I read about it (I haven't seen it yet --- I would like to, since it looks really neat, but it's hard for me to get into Kansas City proper, since I live way out in the suburbs, don't drive, and am loth to take up three or four hours of my parents' time just to ferry me out to see a play) that I thought had special significance to autistic self-advocates.

First, there's this:

(Image taken from this review in the Kansas City Star).

In this scene, Boy is taken to a Behavioral Intervention Center and shocked in an effort to make him normal. Both the use of electroshock and the use of the phrase "behavioral intervention" call up autism-specific associations: the Judge Rotenberg Center in Massachusetts, where each student (many, but not all, of whom are autistic) is outfitted with a backpack-like device that will zap them whenever a staff member presses a button; early experiments using shock (and other "aversives," such as yelling, slapping, shaking or restraint) to try to train autistic children to act normal.

Another thing autistics may find particularly familiar is the metamorphosis of some characters into monsters. Boy gets labeled a monster, and in his travels he meets a real monster who used to be human. Boy has to choose whether he will become a monster, too, or stay human despite being called a monster.

One thing I wonder is, why does only the monster have a name? He's named Hugo, while Boy and Girl are not named. That's interesting to me --- I can see that, in the world of the play, any expression of individuality --- of difference from others --- is monstrous; maybe the name is part of that. Embrace the monster, become too far removed from your fellow humans, such that you are no longer even one of them, and you become a perfect individual. You're the only thing walking around that looks, talks, or feels like you, so you're no longer a human, you're a (your name).

Anyway, that's that.

Atypical Boy will be performed at the Coterie March 10 through March 29, every day but Monday. Its Coterie run is the world premiere; maybe in a few seasons it will come to other cities in the US, too. It definitely sounds like a fun, interesting thing for autistic (or otherwise neurodiverse) families to go to; I'd urge Kansas City area parents to check it out!

Wednesday, March 11, 2009

Oh No, An Analogy!!

While drafting my epic-length response to Jonathan Mitchell's comment on this post, an analogy occurred to me.

First, some context.

Jonathan wrote:
Autism is still a disability that prevents people from being able to talk, causes them to smear feces on walls and be totally dysfunctional in its most severe cases. Trying to make the glass half full by describing it as a different form of brain wiring rather than a disease indeed does not change the contents of the glass. It is still a bad thing that needs to be cured no matter how much phoney baloney spin you and the rest of the ND put upon it and try to make a glass half full.
I responded (in part):
...I do not think the idea of a cure for autism is anything more than a colossal blind alley. I strongly doubt its possibility, for one thing, given how many different genes have been shown to play a role in its heredity, and the tiny share of all cases of autism each gene is found to explain; and for another, I think it's ridiculous to try to engineer away an entire category of people on the grounds that *SOME* of those people lead miserable lives for reasons that might be partially attributable to their genetic makeup.
As I was writing that, it occurred to me that there does exist a category of human being that, however internally heterogeneous it may be, differs from what is often held up as the default, "typical" human being in a lot of ways, and whose overall failure to thrive in comparison with the default group is often blamed on this other group's tricky psychological and physiological differences. Yet, despite this group's disability, no serious person would ever suggest curing them of their chromosomal condition*.

Who are these people? Why, they're women!

Compared to men, women are much more likely to have certain psychiatric disorders (e.g., anxiety and depression), less likely to be working, more likely to be working an unrewarding, low-paying menial service job, and much, much more likely to be poor. They are also more likely than men to engage in self-injurious behavior or attempt suicide, although men succeed in killing themselves much more often than women do.

Most people's** first impulse is not to blame all of these things on any inherent physical or psychological feature of womanhood, however.

Even when there might be innate physiological factors that work to women's disadvantage, though --- our seriously inconvenient reproductive biology springs to mind, as does the possibility of sex differences in brain chemistry contributing to women's greater share of mood disorders --- nobody uses that to argue that femaleness itself is a pathological condition that should be cured!

That's as it should be, and also as it should be for autism.

EDIT: It turns out this analogy has been made before --- by Joseph, back in 2006! His post is a lot funnier than mine, too.

*Yes, this statement is a bit problematic, in that it glosses over the extent to which womanhood has been, and still is, pathologized. There is a significant difference, however, between the way women are pathologized and the way autistics are pathologized: certain aspects of women's lives --- menstruation, pregnancy, menopause --- might be medicalized, but every aspect of autistic people's lives, up to and including the mere fact that we exist, is seen as a major medical crisis to be stopped. I feel reasonably certain that, if someone were to call all women diseased, and call for a cure that would turn them into men, almost everybody would consider that person crazy. And that's the important thing for this analogy.

**I am optimistically excluding antifeminists from "most people" here. I do think that, while most people might indeed be mistaken about the extent to which sexism exists in the industrialized West, they are usually willing to grant that women in other parts of the world have it pretty bad, above and beyond what men in poorer countries experience.

Tuesday, March 3, 2009

Autism, Neurodiversity and Self-Esteem

Joseph of Natural Variation has an intriguing post up about differences between autistics who think of their autism in neutral, mixed or positive terms* --- and who therefore tend to think of it as a difference to be accommodated rather than a disease to be overcome or cured --- versus those who see their autism only in terms of difficulties, and wish they were not autistic.

Joseph's post was a response to this post by Jonathan Mitchell of Autism's Gadfly, which cited this article in the journal Dyslexia (Joseph provided a link to this annotated Powerpoint presentation on the same research) on the BRAIN.HE project, which interviewed 27 neurodiverse college students about their attitudes and experiences.

From the abstract:

Participants generally held one of two views about their identity as "neurodiverse": a "difference" view --- where neurodiversity was seen as a difference incorporating a set of strengths and weaknesses, or a "medical/deficit" view --- where neurodiversity was seen as a disadvantageous medical condition. The former view was associated with expressions of greater career ambition and academic self-esteem, while the latter view was associated more with processes for obtaining the Disabled Students' Allowance.

While Jonathan Mitchell attributes the rosier outlook of the students who thought of themselves as "different" rather than "broken" or "damaged" to the former group's having fewer objective challenges than the latter, Joseph suggests that the difference might lie entirely in the two groups' worldviews. If you know your mind works differently from most people's, it makes sense that your appraisal of your own abilities and potential will vary with the value you assign to those differences. If you see them all as pathological, and yourself as something less than a whole person, of course you won't think much of your chances for future success and happiness. At the same time, if you see yourself as having special gifts to offset your difficulties, you'll probably be more optimistic, both about your future and about your present accomplishments.

The report itself doesn't give enough information to rule out either of those possibilities. In terms of methods, this was a qualitative rather than quantitative kind of study, and thus most of its "data" were in the form of common themes emerging from the students' life stories. As the focus of the report was on the students' attitudes and experiences, rather than on academic or life outcomes, there was no information given about the students' relative aptitudes, "functional levels" or whether these correlated in any way with self-esteem or beliefs about neurodiversity.

The researchers tracked four things: students' view of neurodiversity (which they split into two categories, "Difference/Strengths" and "Medical/Deficit"); students' experience, if any, of being called names (like "stupid" or "lazy") by unsympathetic teachers; students' "academic self-esteem" (which I imagine means how good a student you think you are); and students' plans for the future (which fell into three categories, Ambitious, Uncertain and Negative, or various combinations of those). They found that most of the students who viewed themselves in terms of the medical model of disability, with its focus on deficits, were uncertain or pessimistic about their futures and more likely to have low academic self-esteem.

13 of the participants viewed their neurodiversity as an entirely negative matter. These participants frequently used negative or medical terminology[**] when talking about their labels which indicated that they felt in some way broken or damaged. Of the 13 students who had this view, 8 indicated low academic self-esteem and expressed confusion and uncertainty about their future plans.

As Joseph says, these findings could be explained just as well by either hypothesis. The less-optimistic students could just be less gifted, and their pessimism a realistic appraisal of their likely prospects. They could just as easily be pessimistic because they have learned to see themselves in a pessimistic light.

While nothing in the study clearly supports one hypothesis over the other, I did see something that cast just a little bit of doubt on the contention that the more confident, optimistic students are objectively smarter or better adapted than the gloomier ones: Almost every student (six out of seven) who had been called unflattering names by a teacher went on to develop a difference- or strength-based view of hirself (rather than a deficit-based one), and most of them (five out of six) had good academic self-esteem and half of them (three out of six, with two of the remaining three not answering the question) saw themselves having bright futures. This group of students also represented more than half (six out of eleven) of the Difference/Strength group. Clearly, the Difference/Strength group cannot be so brilliantly high-functioning as to have sailed through their earlier schooling without a hitch, if so many of them have been singled out for individual denunciation by various teachers.

The researchers explain this by invoking the students' determination. When their teachers antagonize them, the students become motivated to prove the teachers wrong.

This post has already gotten long, so I will end here for now. I would like to look at some of the literature on self-esteem, though, to see if I can't throw some light on what factors do and don't influence it. Ideally, I could also dig up some specific research into self-esteem in autism, though so far I haven't found any such articles. I would, even speaking from a position of total ignorance so far, be willing to hypothesize that different factors influence self-esteem in autistic people than in NTs.

*Miss Gonzo Galore pointed out in comments that it is misleading to speak of "pro-" or "anti-neurodiversity," as most autistics have probably not politicized the issue. I think this is quite likely true, and thus have used a somewhat more broad-based framing terminology.

**As a side note, I think I should point out that just using "negative or medical terminology" to talk about one's neurological wiring doesn't have to imply any particular attitude toward that wiring. It could just reflect how one has learned to talk about one's differences, which are often very hard to articulate. I will often use both medical terminology *AND* "negative" phrasing (as in, "I don't do X" or "I completely lack Y") because 1) the medical term for a thing is often the first --- or only --- name I've ever seen for that thing, and it's easier to name something than to describe it; and 2) when describing how my mind works to NTs, I often find it's easiest to start by telling them what their minds do that mine doesn't do. From there, I can move on to what I do instead.

Edward Griffin, David Pollak (2009). Student experiences of neurodiversity in higher education: insights from the BRAINHE project Dyslexia, 15 (1), 23-41 DOI: 10.1002/dys.383

Sunday, March 1, 2009

I Am Literal-Minded

The vast, vast majority of paintings I do, I do from life --- and often the subject matter will be dictated by what's in front of my face when I get the urge to draw something.

Exhibit A:

These paintings were actually an art-class assignment: for some reason (maybe to test our color-mixing ability?) the teacher spread out a bunch of crayons on the table and told us to paint them.

Now, this wasn't assigned. The painting below is of a subject I freely chose.

Yes, it is the first thing that caught my eye. It was painted with those very same paints, too! How's that for recursion?

Did I mention I'm literal-minded?