23-year-old Alex Kwan is autistic and the team manager for the West Albany High School football team. Yesterday’s Oregonian describes how, for Kwan, football has become a “safe haven, a place where he is embraced for his differences instead of mocked because of them.” That’s real teamwork, yes?

Be warned. This post contains a disparate slew of references to martial arts (kind of in a Kung Fu Panda vein); chocolate (M & M’s, even); the use of the r word in Tropic Thunder; Thailand; lots of flies. (And autism, but you knew that.)

No, we didn’t once again see Po the Panda executing his moves against an opponent to get that last pad thai noodle or chocolate bar, with insects buzzing in the background. All the items listed in the first paragraph appear in Chocolate, a martial arts movie from Thailand with an autistic heroine who really knows how to kick her way around. From a review on Film School Rejects:

["Tattooed hottie"---that's a quote, please note---Zin] gives birth to an autistic girl she names Zen, and we’re treated to another montage of doctor visits, M&M’s, transvestites, and fly eating. Soon Zen is a teenager and Zin has been diagnosed with cancer and desperately needs expensive chemotherapy. Zen and her friend, Moom, discover a black book filled with people who owe her mom money, and the duo sets out to collect the debts. Lucky for them, this particular form of autism has granted Zen increased physical prowess in other areas. She can catch anything thrown at her thanks to her highly developed spatial awareness, she’s able to befriend the fattest kid in town without lowering her own coolness factor, and she can master martial arts moves she’s seen on TV (Tony Jaa footage actually) and in the streets outside. So get ready for flying fruit, knives, and fat kids… there’s a s[***]load of ass-kicking coming.

That ass-kicking takes over thirty minutes to start, but once it does, prepare to be awed. Zen (Jeeja[---"new Thai sensation, Yanin Vismistananda"]) is cute and convincingly “special” (in a Lifetime Movie Channel kind of way) when she’s calm, but fierce and fast once the fighting starts. She mimics stances and moves from Jaa to Bruce Lee including the latter’s famous thumb swipe over the nose and guttural, high pitched growl.

The fight scenes are convincingly painful to watch, but more impressively, Zen’s skills seem to increase with each successive encounter. Her fists, feet, and Chan-like acrobatics all become faster and more precise as the movie goes on. This makes sense narratively as she’s technically learning to fight throughout the movie, but it can make for some awkwardly disjointed clashes early on. A brawl in a fly-infested slaughterhouse impresses with flying knives and Jeeja’s skillful pole fighting. All of these smaller fights pale beside the film’s finale though, when she finds herself outside on a foot-wide ledge two to three stories above the street. Neon signs jutting out from the wall, opened windows, and the hard street below all play painful roles in this amazingly choreographed clash.

…

But can Claire Danes playing Temple Grandin match Jeeja’s kicks?

BethBkl about autism tattoos.

RAJ about mice models of autism.

Sue comments on sometimes moving is all you can do.

Fielding J. Hurst on the teenager who attacked an autistic teen and posted a video on YouTube.

“Doesn’t make eye contact”: It’s often noted that autistic individuals don’t do this. Science Daily reports on new research that it’s society and cultural norms that influence how people recognize each other’s faces:

Lead researcher Dr Roberto Caldara [of the University of Glasgow] said: “In a series of eye-movement studies, we showed that social experience has an impact on how people look at faces. Specifically we noticed a striking difference in eye movements in Westerners and East Asian observers. We found that Westerners tend to look at specific features on an individual’s face such as the eyes and mouth whereas East Asian observers tend to focus on the nose or the centre of the face which allows a more general view of all the features. One possible cause of this could be that direct or excessive eye contact may be considered rude in East Asian cultures.”

Teaching a child to “look at me” is common among teaching (and in particular ABA) programs. We never had such a program for my son (who’s been taught primarily via ABA) but have worked on teaching him to focus his eyes and look at things. I used to have “bad eye contact” myself (I was really, really shy as a child) and learned to look at people in the eyes after attending college and graduate school on the East Coast (at some highly competitive institutions) and from years of teaching.

But maybe eye contact is more than a little over-rated.

A positive (I think?) but somewhat puzzling use of the word “autism” in today’s News Track India, in an article about the use of violence and damage to public property by protesters.

A number of peaceful ways-silent procession, pickets, demonstration, flag march protest, candlelight protest, hunger strike, signature campaign-can be adopted by a person/community for his voice to be heard by the concerned authority.

“Protestors” along with the “brain child” of protest indulged in violent means need to practice autism. They need to look into their conscience. Pause before doing or manoeuvring any such practice! Think about your family!

Autism seems to be equated here with peacefulness—with non-violence. Perhaps it’s a bit of a stereotypical use, but after the past two weeks of “savage language about autism,” equating “autism” with positive action and a positive state of mind is a message that’s good to hear.

Autism not a problem for 12-year-old Muhammad Danial Zainuddin. Danial is autistic and was only able to “mumble a few words” when he started school at the age of 6—-at 12, he is a “straight A pupil and one of the creme-de-la-creme of his school.” He also won a Second Place in the the state Special Education Quran Recital competition, the New Straits Times reports. Danial’s achievements speak for themselves and one can only imagine how things might be different if, when hearing autism, more people said (instead of “tragedy,” “death sentence,” “awful,” and the like)—

not a problem; lots that can be done, and always lots of hope.

I’ve been learning a lot from a recent discussion here about autism genetics. My own interest in the topic arises from what it reveals about how Charlie is linked to us, to our family. While neither Jim’s nor my family has had a child with an autism diagnosis prior to Charlie, we’ve both noted autistic traits in relatives in both of our families.

I’m Chinese American on both sides. I’m third-generation; both sets of grandparents emigrated to the US from Toysan County (Toysan is the Cantonese pronunciation of Taishan, the county’s name in Mandarin). All but a few of my very distant relatives are now in the US. Jim is Irish American by way of Hudson County in New Jersey and Brooklyn: Charlie’s Hapa. Nonetheless, I sometimes wonder what it would have been like for him to have been born in China. What it is like to be autistic in China and to be a family raising an autistic child in China?

There’s a new documentary out called Children of the Stars which tells the story of the family of Feng Jia Wei, who is 5 years old and autistic. He and his parents, Feng Lei and Hao Yue Chun, travel across China to attend an 11-week-course in Applied Behavior Analysis (ABA) at the Stars and Rain school to help him:

In a small village on the outskirts of Beijing, there is a unique little school that runs an 11-week course specifically for autistic families. This school relies entirely on charitable donations and has very rudimentary facilities. Its name is “Stars and Rain”.

The film tells the story of the Feng Jiawei family who, after being on a waiting list for nearly 2 years, finally make the long journey to “Stars and Rain” to participate in the course. They desperately hope the school will teach them how to understand and cope with their autistic 5-year-old son. Their boy cannot speak and is often violent – especially towards his mother. The local schools will not take him and the family feel ostracized from society.

As there is limited community help for autistic people in China and no social security system, the parents are extremely concerned about their future prospects as a family. They know that if they cannot get their son to integrate into society and attend a standard school, then life will be very bleak. Their fear is that their son will never be able to get meaningful employment or support himself.

Should that become a reality, they have already decided on a drastic and tragic plan - to commit a family suicide. They know that when they are too old to work and cannot provide for their son, he will have to beg. They feel he will not survive on the street so they want to die peacefully together by taking a lethal poison. This plan is not uncommon among autistic families in China.

Jim and I have traveled far to find the best education for Charlie, but not as far as Feng Jia Wei’s family, and not just for an 11 week course, but for continued years of school and therapies. I’ve been watching the trailer over and over: A little boy is shown not holding out his hands to catch a ball which bounces off his chest (this was exactly our experience teaching Charlie to catch a ball; he had to learned to track the ball and time when to hold up his hands). Feng Lei asks his son:

Wo shi shei? [Who am I?]

And Feng Jia Wei says:

Baba. [Daddy.]

Huge smile from Baba, big hug, heartmelt.

Children of the Stars also features Tian Hui Ping, who founded the school “Stars and Rain” in 1993 and who is the mother of an autistic child, and Feng Yun Hong, Feng Jia Wei’s teacher. The film was directed by Rob Aspey and produced by Alexander Haase; you can contact them and also here’s more about how you can help.

And, the June 26th Patriot Ledger profiles The Five Project, a Massachusetts-based organization that seeks to fund workshops about autism for parents and caregivers as well as teachers in Beijing and Nanjing; to form support groups for families of people with autism and another for young adults with mental illness and their families; and (hopefully) to send American experts about autism to China and to make it possible for Chinese educators to come to the US to receive training in teaching autistic children.

The autism epidemic commeth — or, more accurately, it goeth. The threat of such a terrible scourge—–lots of children with autism—is behind the calls for “safer vaccines” and “change the schedule!” by anti/pro-safe vaccine rallyers at Wednesday’s Green Our Vaccines (which acronyms nicely into GOV) rally. Get out those toxins, change that schedule, flush that mercury out of those shots and don’t let it get into our kids’ bodies: If we don’t do this, we’re doomed, untold numbers of still-normal toddlers and yet-to-be-born (and even conceived) children could become……..autistic…….if we don’t so something about those shots, and then we’ll have more autism than anyone can handle or pay for…….

This is apocalyptic and scaremongering language typical of arguments for a link between vaccines and autism. Yes, there are more children diagnosed with autism and states and school districts report big increases—-but these increases in the prevalence rate of autism always need to be considered in view of the changes in the very definition and in people’s understanding of what autism is. The diagnostic criteria for “autistic disorder” were significantly broadened with a revision of the DSM-IV in 1984. The rates of autism diagnosis increased from 1994-2003—and, as Professor Paul Shattuck has found, the rates of diagnoses of mental retardation and learning disabilities decreased in the same time period.

Claims of an autism epidemic are based very much on what people feel: Because they’re hearing more about autism, and because more people are talking about autism, and because more children are being diagnosed with autism, people have been saying “epidemic!”. Clinicians, educators, and parents have a better understanding of autism and are better able to detect it and, while some bystanders can get that nervous look when you say your child is autistic, the shame and stigma that parents used to experience when it was believed that they caused autism—the refrigerator mother theory—-has lessened.

There is, one could say, an epidemic going on—-a figurative “epidemic” of understanding and awareness about autism. I’m not so sure my own son would have been diagnosed with autism in previous generations; he would probably have received a diagnosis of “mental retardation” and “emotional/behavioral disorder.” But now I can say he has “classic autism” and people know what I mean. How can you measure a change in knowledge?

And so goeth the claims of an epidemic of autism—the June 6th Times (UK) has an article entitled “The autism epidemic commeth, which heralds the publication of a book entitled Unstrange Minds: Remapping the World of Autism by anthropologist Roy Richard Grinker, who is also the father of a teenage girl with autism, Isabel. The book was published in January 2007 here in the US and started off something of a storm of discussion about whether or not there is an autism epidemic. Prof. Grinker says no, as noted in this January 2007 interview in Time magazine.

But that’s only some of what Unstrange Minds is about: Prof. Grinker looks at autism at other times, carefully tracing the evolution of “autism” in the DSM, and in other places (India, South Korea, and South Africa). The book provides much needed historical and cultural background and context behind the current interest—some might say fascination—-with autism.

Personally, the main reason I like the book (I’ve referred to it here from time to time, and first reviewed it here) is for the story of the diagnosis, education, and growing up of Prof. Grinker’s daughter, Isabel, and for his own account of the effect of all this on himself and his family. Much as I strive to know as much as I can about research, treatments, and the latest issues regarding autism, it’s the personal stories of autistic individuals, parents, teachers, and others that I’m most drawn in by. Whatever you might think about the “autism epidemic” and about vaccines, Prof. Grinker’s account of his daughter is more than worth reading.

Theories commeth and goeth, and good stories about great kids growing up endure.

There’s been plenty of debate about whether or not there is an epidemic of autism; about whether or not the increase in the prevalence rate of autism (now 1 in 150) is due to our being better able to diagnose and count cases of autism, or whether there is some actual something that can be pointed to that is actually causing more children to become autistic. Recently, I’ve noted mention of an “autism pandemic,” a term which strikes me as a not exactly subtle attempt to make the rise in the prevalence rate of autism seem to be a much more extreme, and scary, phenomenon than various autism organizations claim that it is.

According to the US Department of Health and Human Services, the definition of an epidemic is

disease outbreak in which some or many people in a community or region become infected with the same disease, either because the disease has been brought into the community by an outside source (such as a traveler infected with the disease, or an insect that carries the disease and infects people with its bite), or because a pathogen (a virus or bacteria) has changed in a way that either enables it to evade the immune system or has made it more virulent–that is, stronger and more aggressive. Some epidemics occur when an entirely new disease, such as AIDS, or a new version of an old disease, such as influenza, emerges.

We of course associate the word “epidemic” with disease and illness, but the ancient Greek root words of “epidemic” do not have such associations. Epi is a prefix meaning “among” or “upon” and demos is a noun meaning “people” (as in “democracy” = “people-power,” as kratos means “power”). The word “epidemic” is used by the ancient Greek medical writer Hippocrates; he uses the term “epidemic” to describe an illness that has spread “among a people”; that is widespread and common.

Pandemic—the pan is ancient for “all”—is defined as:

an epidemic that spreads throughout the world, as influenza did in 1918. Pandemics may involve an old disease, such as smallpox or the bubonic plague, or they may occur when a new disease or a new form of an old disease develops and spreads.

Thus, saying that something is an “epidemic” or a “pandemic” is matter of degree. Epidemics are widespread in general; pandemics are “throughout the world.”

Certainly—in part because of the internet, which makes it possible to read newspapers and websites and more from countries all around the world from one’s home computer—one reads about autism being everywhere throughout the whole wide world, and every day. The notion of autism awareness is going global: We now not only have Autism Awareness Month, we have World Autism Awareness Day. But whether this is the reason to declare an “autism pandemic” is not at all clear. But just because it has suddenly occurred to us in the West that “there’s autistic persons in Ghana, South Korea, Thailand, Dubai, India, and everywhere,” and that there are autism organizations worldwide, hardly means that there is now an “autism pandemic.” It does mean that we are much more aware that there is — and we shouldn’t be surprised — autism in all and any countries around the world, among peoples of all races and ethnicities (my own half-Chinese son, Charlie, being in this category).

The claim of an autism epi/pandemic resurfaced yet again with a sensational claim from journalist David Kirby in a post that appeared on May 8th on the blog Age of Autism under the title IF AUTISM HAS ALWAYS BEEN WITH US…, and which then appeared, in edited form, also on May 8th, in the Huffington Post, under the title US Medicine: 97% of All Autism Cases Went Undected [sic]- Until Now?:

Investigators could only find, “a total of 645 adults diagnosed with autistic spectrum disorders in Scotland,” the audit said, adding that, “we know that this is a significant underestimate of the total number of adults with autistic spectrum disorders from the comments received with these figures and also the large amount of missing data in this table.”

[graphic]

I would bet a billion pounds that there are many more than 645 adults with autism in Scotland. So yes, this is probably a significant underestimate.

But by how much? Is it possible that only one in every 110 adults with autism in Scotland is standing up and being counted?

Let’s look at the numbers. There are approximately 34,000 young people with autism in Scotland, born during the 16 years from 1987-2002. That is an average of 2,125 cases per birth cohort. But among older people, born during the 31 years between 1955 and 1986, there are only about 600 reported cases, or just over 19 cases a year.[Age of Autism]

Check out the graph and you’ll see that Kirby made a significant error. Sullivan wrote on Left Brain/Right Brain in Adults, Autism and Scotland on May 10th:

Based on this, he has determined that if the true incidence of autism is constant, about 1 in 110 of the adults are missing from the count.

OK, go back and click on that image for me. I know you skipped over it, but, go take a look at the bigger version.

Did you see it? Yep, the number is not 34,000, but 3,400 adults with autism in the Scottish survey. A factor of 10. Don’t worry if you missed it. Mr Kirby (who spent some time ‘analyzing’ the data) and at least 20 people who responded to his post missed it too.

At this point, I can hear the screams of “So what, that’s just a small mistake. You are trying to distract us all from the big picture.” Because, in the end, even though Mr. Kirby is off by a factor of 10 and there aren’t 100 times more kids than adults receiving services with an autism label in Scotland, there is a roughly factor of 10 difference in the administrative prevalence of autism.

A factor of 10 is still big. I’d argue it’s huge.

I have to say, if I’m balancing our checkbook, a factor of 10 is definitely huge: One more zero and the possibilities, while not infinite, are pleasant to contemplate (paying off the really large therapy bill; not wincing quite so much at the price of a gas…….). Mike Stanton at at Action for Autism also points out Kirby’s error, notes how “misleading” the figures are, and reviews the changes between the original Age of Autism article, and the revised article on the Huffington Post.

Stanton notes that he is “much more interested in the questions and the answers that will arise from the recently announced Audit of Adults with Autism” and also that “real data, fit for purpose is an all too rare occurrence in debates about autism.” Indeed yes, and especially for all that terms like “autism epidemic” and “autism pandemic” get thrown around, the fact is that there are a lot of autistic people of every age out there who have many needs. Some need, as The Scotsman notes, better school placements and teachers with real training in teaching autistic children; everyone needs more understanding that goes beyond basic “awareness.”

And perhaps, the more we know about autism, the more we can see it—-to the point that there seems to be so much autism out there that it is reaching epidemic, even pandemic proportions.

Seems, but that does not mean that there actually is an “epidemic” or a “pandemic”—-be careful about those numbers.

That’s the question I keep seeming to run into among parents: Where to live to get the best possible services for an autistic child? Over at About.com, Lisa Jo Rudy asks where should families move for better autism resources and notes that “in the United States, autism resources vary radically from state to state, county to county, and even town to town.” (She notes that she has heard “good things” about New Jersey (where we live now; my husband is a native); Minnesota (where Charlie was diagnosed); and North Carolina (where Charlie has yet to visit….). Today’s Atlanta Journal-Constitution also asks “where are the best schools for autism around Atlanta.”

And needless to say the search for a school to educate autistic children is hardly limited to the US. While I’ve heard of parents from around the world moving to the US for schools, more autism schools are being opened around the world. Here are some in Asia: In China, Ma Chen, who has an autistic daughter, has started three autism schools in China. In Thailand on Koh Samui, Emma Dyas is hoping to start a school for children with autism and other educational needs; as she wrote here earlier:

There are currently no educational facilities for children with autism on Samui and to send their children to schools elsewhere is simply too expensive for most Thai families. With this in mind we are trying to assess the possibility of changing this. We would like to set up a non-profit school for children with autism and other special educational needs on Samui at no, or minimal cost to the parents of these children. This idea is in it’s most formative stages. So far we have a suitable site ( our current location that we will be moving from next year), however we will need the following; corporate sponsorship to cover the costs of running and appropriately outfitting the school and Teachers and other experienced staff. Any information on organizations that could help us, or any individuals who have any ideas, information, would be interested in working with us or have experience to share would be most gratefully received.

There are autism schools elsewhere in Asia, Open Door in New Delhi, founded by Merry Barua, and the Milal School in Seoul, South Korea.

We took the chance and moved from the Midwest back to New Jersey after hearing about the state’s private autism schools. Charlie was not able to get into one of these, and we’ve moved a number of times to find the public school district with the right program and services for him, and hope that our current school district will be the one to see Charlie through all the way into adulthood. We’ve been fortunate that circumstances that we’ve had the resources to do this; I think that Charlie being an only child has made these moves easier (not that they’ve been easy!). And—keeping mind the current shortage of housing for disabled adults here in New Jersey—I’m not at all sure where Charlie might end up living as an adult.

Where where where……

The Star (Malaysia) notes that 1 in 625 Malaysian children is autistic, which would be a much lower prevalence rate than the 1 in 150 figure among children in the US. But some think otherwise:

If this were to be taken as a standard in Malaysia, there would be more than 3,000 new cases each year nationwide.

Said [National Autism Society of Malaysia (Nasom) chairman Teh Beng Choon]: “The question is how different are we in Malaysia from the US? That’s a pretty scary number. Everyone should be concerned.”

Dr Hasnah Toran, a senior lecturer in Early Intervention, Autism and Assessment from Universiti Kebangsaan Malaysia’s Education Faculty, believed the situation in Malaysia is closer to that of the US as revealed by the recent research.

“There are various problems with the survey conducted in Malaysia (which said that one in 625 Malaysian children is autistic). For one, it was only conducted in Perak [one of the 13 states of Malaysia]. That represents only the tip of an iceberg in relation to the birth rate around the country. I’m not convinced (of the figures) because each time I walk into a school, I can see some students displaying autistic symptoms,” she said.

Suggests the difference that awareness and understanding of autism can make, wherever in the world you are.