City Mouse, Country Mouse, Autistic Mouse

There's one more thing from Unstrange Minds that stuck in my head, that I didn't think to include in this post and which probably deserves its own post anyway, given how much stuff was already in the other post.

Anyway, in the chapter on autism in South Korea, Roy Richard Grinker alludes to something I've seen mentioned before, and am curious about.

While describing differences between rural South Korean villages and the capital city of Seoul in how these communities treat their autistic members, Grinker mentions some research conducted by the World Health Organization comparing how well people with mental illnesses fare in developed vs. developing countries:

An agricultural area often belittled by Koreans and long neglected by the government, Cholla-do remains the most underdeveloped region in one of the richest countries in the world. Cholla residents are familiar with discrimination and adversity and find it hard to improve their class and social status. They consider it a great success to make one's career in Seoul, where more than 25 percent of South Korea's 44 million people now live.
...
Still, after asking a few questions here and there (Are there any children who don't speak well? Are there children here with brain disorders?), I found a sixteen-year-old boy and a nine-year-old girl in a mountainous county. Everyone seemed to know about them. And when I talked to the barber and the local grocery-store owner about them, there was no hint of discomfort or pity. Peter, as his mother wanted him to be called, was good with bicycles and served as a messenger for two villages, delivering letters and packages with a broad smile. He saw a doctor once every two months and was medicated with a small dose of an antipsychotic drug that calmed his anxiety and some of his repetitive movements. The girl, Soo-Rin, was in the village with her single mother only on weekends because she attended a special school for children with Down syndrome, cerebral palsy, and mental retardation. But everyone knew her too. Her room at home was lovely, pink with lace curtains, stuffed animals, and Disney characters. Her mother said she takes a medication at school to help her pay attention, but she didn't know what it was called. In these villages, you can find proof of something the World Health Organization has been arguing for years: People with mental disorders do better over time in remote, nonindustrial societies than in urban, industrial ones.

I'd read about that research before, in Robert Whitaker's book Anatomy of an Epidemic; in that book, he argues that the reason the people in developing countries are more likely to recover from acute mental illnesses, and don't become chronically mentally ill as often as people in developed countries, is because people in developing countries often don't have access to psychiatric medication, which Whitaker argues actually worsen a person's condition over time.

Grinker lists an earlier book by Whitaker --- Mad in America --- in his bibliography, along with a book-length follow-up to this study (full text here), but he is not making Whitaker's argument here. Instead, he thinks the people in the rural villages are more accepting than the people in the cities:

This is not to say that life for the disabled is easy in the villages --- even someone with a mild speech impediment, who is otherwise normal, will have just as much trouble finding a spouse as an urban dweller with the same problem. And parents can be just as devastated. One man confessed to me that in his despair he once took his young autistic son high up in the mountains, intending to slit his throat, but couldn't bring himself to do it. But for most parents of disabled children, life in the rich city of Seoul is more stressful than in the more humble village. One of the paradoxes of rural life is that people in the villages tend to be relatively accepting of diversity. Little remains secret, and there seems to be a place for everyone. In the rural areas, people assume that things would be much better for their children in the city. But in the city, in the sprawling, indistinguishable apartment complexes of Seoul, most people do not know their neighbors, even though they watch them as closely as they can. The pressures to measure up can seem overwhelming, and families try to keep anything that might reflect badly on their status hidden from view. The moment you bring your disabled child outside in this densely populated city is the moment you are confronted by strangers, people who will watch and judge you.

Later on, he says something that would seem to rule out Whitaker's non-drug hypothesis: the children he met in the rural villages were taking psychiatric medications, while very few of the children he met in Seoul were taking any.

He sees this as symptomatic of the prevailing viewpoint in Seoul that autism is basically a death sentence; if nothing can make an autistic child non-autistic, what's the point of drugs or therapies? It all just costs money, and with drugs there's also the matter of side effects to consider.

(I actually thought his interviewees' concern about the side effects of psychotropic drugs was sensible; I thought Grinker in this passage was being way too uncritical of US psychiatrists' willingness to prescribe these drugs to children when so little is known about their long-term or developmental effects. I think his point about the all-or-nothing mentality is a valid one --- and that mentality is certainly not restricted to South Korea! --- but I don't share his faith that drugs always lead to better quality of life. Indeed, often their use is a symptom of the same societal rigidity that he blames for making urban life so much harder for autistic people to participate in than rural life.)

Anyway, his mention of those WHO studies reminded me that I had wanted to read them (and there are still more follow-ups, meta-analyses and similar studies from more recent years, too), and post about them.

Strangers in an "Unstrange" Land

I just finished Roy Richard Grinker's book Unstrange Minds: Remapping the World of Autism, and I very much recommend it to just about anyone with an interest in autism.

It's written from a parent's point of view, and mostly (it seemed to me) for an audience of other parents, but there's a lot in it to interest people outside that core audience, too. There's a lot of historical stuff about the first descriptions of autism, and about how psychologists have tried to understand it over the past six decades or so; Grinker's father, grandfather and great-grandfather were all psychoanalysts (psychiatrists, too --- his grandfather founded the Archives of General Psychiatry), so he has a very strong grounding in the history of psychology and psychoanalysis.

He also addresses the question of whether there is or is not an autism epidemic, going into some detail about how diagnostic categories have changed, how the availability of special-education services varies by diagnosis, and how the ways of measuring the prevalence of autism have changed.

The first edition of the DSM to have "autism" as a category was the DSM-III, published in 1980. The criteria for "Infantile Autism" were fairly specific:

A. Onset before 30 months of age
B. Pervasive lack of responsiveness to other people (autism)
C. Gross deficits in language development
D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, and pronominal reversal.

(There was also a category for people meeting all of these criteria, but with the condition not appearing until after 30 months of age; there were also "residual state" diagnoses for people whose speech problems or unresponsiveness had lessened to the point that they no longer met the above criteria).

The DSM-III-R criteria were somewhat looser, getting rid of the age-of-onset criterion and collapsing the "residual states" into Autistic Disorder itself --- you could have an autism diagnosis even if you did not currently meet all the criteria, as long as you had met them before.

The loosest criteria of all were those of the DSM-IV, which I had already known, but what I didn't know was that their flexibility wasn't all by design:

[T]here was an error in the final manuscript. It is not well known, even among experts, but in 1993, when the authors of the child psychiatry section of the DSM were editing the proofs of the new DSM-IV, which would be published in 1994, they missed a critical mistake. For PDD-NOS, the largest group of autism spectrum disorders, they had intended to write as the criteria, "impairment of reciprocal social interaction and in verbal or nonverbal communication skills." A different text was accidentally published. It said, "impairment of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present." The authors had wanted someone to qualify as autistic only if they had impairment in more than one area, but the criteria, as published, required impairment in only one area for a diagnosis of PDD-NOS.

Another interesting aspect of his discussion of autism diagnoses hinges on the different priorities of clinicians and researchers, and his idea (well-buttressed with quotations from prominent psychiatrists) that autism diagnoses are often made not because "autism" accurately describes the child being evaluated, but because they think the special-education services targeted at autistic children will do the most good for that child. That would go a long way toward explaining the "diagnostic substitution" that's occurred over the years, with more children being classified as "autistic" at the same time as fewer children are being classified as having plain old intellectual disability. (Grinker also includes a parallel instance of a diagnostic category that no one would argue is actually becoming more common --- traumatic brain injury --- becoming more widely used over the same period of time, due to changes in the U.S. Department of Education's disability coding system).

The part of the book that was most interesting to me was the series of chapters on cultural attitudes toward autism in three other countries: India, South Korea and South Africa. For each country, Grinker profiles one or two families with autistic children, usually starting with the mother, and letting her tell the story of how she came to suspect that there was something different about her child, and how she overcame varying degrees of stigma, disbelief and lack of services to get her child therapy, special education and a place to live when she could no longer take care of him/her.

We meet Golden and Suzanna Khumalo, and their son, Big Boy, who moved from Soweto to Cape Town in South Africa to get their son to a psychiatrist, and away from Golden's parents and ex-wife, who blamed Big Boy's autism on, respectively, displeased ancestors and witchcraft. We meet a woman named Merry Barua, in Delhi, India, who founded a school for autistic children called Open Door, which she began for her own son, in the absence of any other school that met his needs. We also meet two families from South Korea: a woman named Seung-Mee, with an autistic daughter named Soo-Yong, who joined a Christian church because the church members were the only people she ever met who really seemed to accept her or her daughter, and another family with three children, one of whom is autistic and kept hidden from the world. Autism is a highly stigmatized condition in South Korea, and one that reflects poorly on an entire family, so often doctors will diagnose a child with an attachment disorder instead. Grinker does think it's getting better for autistic people there, though: a recent film about an autistic marathon runner is lessening the taboo somewhat, and giving people the idea that autistic people can do more, and have fuller lives, than they had previously thought.

There was one aspect of autism that I thought this book didn't go into very much, though: he doesn't include very many quotes from autistic people themselves. (I can only remember one, actually --- at the very end, talking about a college class on autism he taught where one of the students had Asperger's syndrome). This didn't bother me as much as it might have, since he wrote about his autistic daughter Isabel in such an empathic way; rather than simply describe her behavior as if she were some kind of space alien, he gives context for everything she does, and tries to convey something of her feelings. He lets us see her grow up, learn things, acquire skills, and pursue her special interests. He writes from a caregiver's point of view, and everyone he interviews is also a caregiver, but he writes about his daughter with such love, respect and understanding that I never got the feeling that he thought of her as a burden, as an extension of himself or as anything but her own person.

Stigma

I thought this paragraph in the Discussion section of the article I posted about yesterday was so interesting it deserved its own post:

Although researchers have not found cultural variability in phenotypic expression of ASDs, cultural variables may affect prevalence estimates. Indications generally suggest ascertainment bias toward lower prevalence in South Korea since Koreans consider autism to be a stigmatizing hereditary disorder; autism (chap'ae) impugns the child's lineage on both sides and threatens the marriage prospects of unaffected relatives. As a result, autism is often untreated, misdiagnosed as attachment disorder, or unreported in records. Although our total population approach avoided clinical and administrative obstacles associated with stigma, it is possible that some parents, fearing a diagnosis, chose not to report ASD symptoms or to participate in diagnostic evaluations.

I don't know if this blog has any Korean readers --- if any of you are reading, I'd love to hear your thoughts on the accuracy of the quoted passage.

Taking the passage at face value, it seems to me that the difference in stigma associated with autism in the U.S. and in Korea is more a matter of where the stigma is directed than whether a stigma exists at all. Autism is very much a stigmatized condition here; it's just that the family members aren't seen as tainted with faulty genetics (and thus less marriageable) as much as they are alternately pitied and lionized for living with an autistic person. The stigma here is directed almost entirely at the autistic person hirself, although of course parents and caregivers who make choices that don't fit with the current ideas of what's best for an autistic child come in for some serious disapproval, too.

Coming Unstuck in Time

Neuroskeptic posted about this case study of two autistic young men who experience "time slips" --- extremely vivid memories, as if they are reliving the past instead of just remembering it:

CASE 1

Case 1, a male patient, was 16 years old at the time of his first visit to our hospital. He had not shown any delay in language development but had been isolated and unable to make friends since his infancy. In addition, he was extremely clumsy. He was extremely afraid of developing liver dysfunction. He had been bullied by a classmate when he was in the 8th grade; thereafter he refused to go to school and began to stay indoors. One day, he clearly recalled bullying incident that had occurred a few years earlier and re-experienced the feelings of fear and frustration as if he were once again experiencing that event. Thereafter, he often had similar experiences, even though he did not purposely intend to recall the event, and he became strongly distressed. He and his family stated that the recalled content was always the same. He thought that the distress could only be relieved by obtaining revenge on the boy who had bullied him, and he visited the boy's house with a knife. He was subsequently admitted to the emergency ward of our hospital.
...
The patient continued to experience the [time slip] even after he was hospitalized. If he saw any man with an appearance similar to that of the boy who had bullied him, he recalled the same experience of being bullied and became violent. The patient's doctor and the ward staff observed that the patient made no effort to avoid the recall stimuli but instead seemed to approach the stimuli. ...

CASE 2

Case 2, a male patient, was 27 years old at the time of his first visit. He had shown no marked clinical signs of delayed language development. However, since an early age, he had exhibited disturbed reciprocal sociality and did not have any close friendships. His interest was limited to collecting figures of comic characters. He began to be bullied during junior high school. He entered senior high school but quit during the second year. Thereafter, he tended to seclude himself at home. One day, he watched his neighbor discarding a cigarette butt in front of his home. Thereafter, he began to be annoyed by that memory. Almost every time he heard the voice of that neighbor or saw that man, he would leave his home and curse at the neighbor. His behavior became more violent and he eventually threatened the neighbor with a wooden sword. Because of this event, his family brought him to our hospital as an emergency patient.
...
In this case, an acoustic or visual stimulus (the voice or appearance of the neighbor) provoked the [time slip] resulting in the recollection of the same visual scene accompanied by the vivid emotions that he had experienced at the actual time. He took no measures to avoid remembering the event and tended to advance closer to the neighbor.

The authors of the paper observed four cases of time-slipping autistic patients in all; two of the troublesome recurring memories involved bullying at school, and two involved bad experiences with neighbors. All of the instances of time slipping that they heard about were bad; the memories triggered strong, unpleasant emotions and drove all four young people (three male and one female) to violence.

I mentioned in the comment thread at Neuroskeptic's blog that I experience this kind of vivid, immersive reminiscence --- it can be like those described in the article, where I remember being bullied or some other unpleasant experience with no buffers between me and it, but most often the things that come up are emotionally neutral, and not even necessarily episodes from my life; they might just be something I've seen before.

An example of the latter sort of memory might be my remembering, for decades, a random doodle I drew in preschool. Even now I can call it up --- a monster's face, with scraggly green teeth and a huge lumpy oval of a head. I even remember what color markers I used to draw it. I have similarly clear memories of making colored spinners out of paper plates, cutting off the edges, using a compass to bore a hole through the middle, and drawing a checkered pattern of concentric rings in contrasting colors. I would string a long piece of yarn through it, with a big, bulky knot on one end, and then spin it so that it would climb up the string and into the air, like a brightly colored UFO. This would captivate me for hours; I probably spent most of my schooldays in fifth or sixth grade doing this.

Most of these are really fragmentary, though; a single image, or a single multisensory impression. I don't really have flashbacks where I relive an incident, as the guys in the article seem to be doing. Even when I do recall an episode, it's only fragmented impressions that come back with this immediacy; the whole episode I have to reconstruct with narrative memory, as most people do.

I said on Neuroskeptic's blog that I considered my randomly retrieved archived sensory impressions to be a visual analogue to echolalia --- I hear echoes in my head of many of the things I hear, and sometimes I feel compelled to repeat them aloud; these memories are like visual echoes. However old they are, they persist, and sometimes they'll find their way into my conscious mind and I will hear the sound, or see the image, again. Even if I first saw it ten, fifteen, or twenty years ago.

Autism Manga!

I finally got my hands on the first volume of Keiko Tobe's ongoing manga series, With the Light: Raising an Autistic Child, which I think does a wonderful job of showing how its protagonist (the young mother of an autistic boy, who in this first volume grows from a newborn to an elementary-school-aged kid) adjusts to the discovery that her son's life probably won't go the way she had fantasized before he was born.

Near the beginning of the story, when Sachiko (the protagonist) first learns that her fussy, temperamental baby boy, Hikaru, is autistic, she goes through a period of mourning.

She cries when she sees other people's cute, talkative, well-mannered toddlers (like the one shown at left) and thinks to herself that Hikaru will never be like that.

Particularly, she wishes he would call her "mommy." Hikaru doesn't speak, you see.

He also won't make eye contact, and avoids directly interacting with anyone.

This makes Sachiko miserable at first --- she feels like Hikaru is rejecting her, and at the same time her marriage is suffering because her husband, Masato, works long hours and gets angry with her when he comes home and Hikaru is having a tantrum and can't be calmed down, which happens often.
Sachiko is loneliest in this first part of the story, when she doesn't yet feel anything but grief toward her son, and she's estranged from her husband, and her husband's family thinks she's a lousy wife and mother, and she can't bear to be with her friends anymore because their typically-developing children depress her.

The only person in her life who offers her a sympathetic ear is her frail, elderly mother, from whom she keeps most of the less-pleasant parts of her life secret for fear of making her worry.

But the story doesn't stay in this rut for very long; little by little, Sachiko learns to spot the signs that Hikaru loves her, and since love is the main thing she wanted from him, this makes her happy.

Here's the scene that represents this turning point:

As sugar-coated as this might seem (Oh, he really does love me! He picked me some flowers!!), most of what happens after this point (as well as all that's come before) makes it clear that Sachiko's life is not easy. (Neither is Hikaru's, though --- that's one of the things I like most about this portrayal of a family with an autistic member: the author/artist clearly empathizes with Hikaru as well as Sachiko, and neither pits one against the other nor treats one as an extension of the other).

One of the major things that changes, once Sachiko realizes she loves Hikaru, is that she starts to notice external, systemic barriers Hikaru faces, and fights to change them. That's another thing I really like about this book --- it explicitly places Hikaru's autism, and Sachiko's efforts to get his mainstream elementary school to admit and accommodate him* in a wider context of societal ableism. Characters who are initially hostile to Sachiko and Hikaru showing up at their child's school or day care are often shown to have a disabled family member of their own (in one lady's case, an elderly mother who has trouble walking and needs physical therapy) whose struggles to get their needs met in a society that doesn't see them, and isn't built with them in mind, brings the initially hostile character around to Sachiko's side.

Hikaru does learn to thrive in his new environment, but it's very much a team effort that allows him to do so. His mother, his father, his special-ed teacher, the other teachers in his school (who have all had a crash course in Understanding and Dealing with Hikaru Azuma, courtesy of the principal), and his classmates all do their part in keeping Hikaru safe and happy, and in teaching him, little by little, to talk, to play with other children, to share, and to be polite and friendly.

The main reason Hikaru does so well, it seems, is that other people are willing to meet him halfway: find out what he understands, what he wants, and start there.

If you're a manga reader, you might want to pick this one up. While it's true that Sachiko, and not Hikaru, is the point-of-view character, and as such we see Hikaru primarily through her eyes rather than his own, I still think there's a lot in this story for autistic readers to appreciate. For me, the radically pro-disability-rights sentiments expressed in this story (in Sachiko's growing conviction that her son should be able to participate in society as fully as he can, and that, to make that wish come true, she'll need to enlist many other people's cooperation) and the explicit tie-ins to other disabilities, made With the Light a lot more interesting than most raising-an-autistic-child memoirs.

It was also interesting to see some indications of how people in Japan think of autism, particularly which misconceptions are common there. It seems like the Japanese lay understanding of autism is rooted a lot more in folk psychology than it is here. In America, I think we mostly think of autism as a disease, and a very big, scary one at that. In Japan, I got the impression from With the Light --- and its helpful Translator's Notes! --- that autism is seen as an extreme manifestation of introversion. (The Japanese term for autism, I read, translates roughly to "self-closing syndrome" or "cloistering syndrome").

*This book gave me the impression that the usual practice in Japan is for disabled students to go to their own specialized schools, though sending disabled students to mainstream schools isn't unheard-of, either. In the U.S., it's a lot more common for disabled students to go to the same schools as everyone else, even if they stay in separate special-ed classrooms all day.

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.
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Via 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 MinnPost.com 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