Most Popular Articles on Autism Bulletin, April 2007

The top five Autism Bulletin articles posted in April:

1. Nick News Focuses on Autism on April 22
2. Unconfirmed Diagnosis in Virginia Tech Tragedy; Related Notes on Autism in Korea
3. CDC Director Cites Autism as Urgent Concern, and other News
4. Autism Awareness Month Coincides with Uptick in National Media Coverage
5. Don Imus, Loud Advocate for 2006 Autism Bill, Loses His Soapbox

Most popular categories or "labels" for readers researching articles on Autism Bulletin this month:

1. Asperger's
2. ABA
3. Autism services
4. Legislation
5. Sports

Source: Google Analytics

Where Are All The Adults with Autism?

"If There's No Autism Epidemic, Where are all the Adults with Autism?" is an interesting essay posted by Roy Richard Grinker and Kristina Chew, each of who has a child with autism. The essay suggests that these adults are all around us, in approximately the same 1 in 150 prevalence that the government cites for children. The difference in perception is now that doctors, educators and parents are poised to look for signs of autism where in the past societal norms classified people as mentally retarded or schizophrenic. Here's a brief snippet:

Just because we cannot count adults with autism does not mean that they do not exist; nor does it mean that the prevalence rate for autism in adults must be lower than it is in children. Adults with autism are, in fact, becoming increasingly visible as autism awareness continues to rise and as more and more adults begin to identify themselves as autistic, and speak and write about their experiences of growing up and living with autism. Their invisibility is not a sign that autism is a childhood epidemic, but rather of how different our knowledge of autism is today.

Read the entire essay here.

Each of the writers is an academic, each is the parent of an autistic child, and each has been writing about this experience. Grinker, an anthropologist at George Washington University, this year published Unstrange Minds, about his research into the history of autism and the efforts by parents and doctors in different cultures to help children get treatment. Chew is an assistant professor of classics at St. Peters College in Jersey City, N.J., who writes the Autism Vox blog.

Wisconsin Governor Calls for Autism Coverage, and other News Briefs

Governor James Doyle of Wisconsin this week said he believes insurance companies should cover autism services for children. Doyle, a Democrat, said he would support legislation filed April 23 by Senate Majority Leader Judy Robson "which would require group insurance policies to provide treatment and care for children with autism spectrum disorders."

The governor's brief statement urges Wisconsin lawmakers to withstand the expected opposition of the health insurance industry: "This proposal will help provide the care and support that children across our state living with autism need and deserve. I hope the Legislature will work in a bipartisan way and side with the children and families living with this disease, and not with the big insurance companies."

You can see Doyle's statement here. A political blog at The Milwaukee Journal-Sentinel explains here that lawmakers last week removed a provision from Doyle's budget to require autism coverage. Senator Robson's statement in support of her measure explains a Senate budget panel removed language from the governor's budget on Friday, April 20. She announced her intent to file her autism coverage bill on Monday, April 23. Read her statement here. Both Robson, a Democrat, and Doyle's statements included this note:

Autism treatment services are already covered by insurers in Kentucky and Indiana and resulted in a less than 1% percent bump in insurance premiums in those states.

OTHER NEWS BRIEFS:

Blair hosts autism advocate

As promised in March (see background here), British Prime Minister Tony Blair met with a leading autism advocate to discuss his autism awareness campaign. Ivan Corea is a leading advocate and campaigner for autism awareness and better services for autistic children and adults. Blair told Corea he supports efforts to improve services. No. 10 Downing Street issued a brief statement on the meeting which you can see here. See the website for Corea's Autism Awareness campaign here.

Yale wins important autism grant

The Yale Child Study Center said it has received a five-year, $7.5 million grant from the National Institutes of Health as part of its designation as an Autism Center of Excellence. See the press release here.

A description of the research the grant will fund, according to Yale:

The [research] team plans three longitudinal projects focused on infants with autism aged 12 to 24 months. Another project involves neuroimaging studies of a cohort of children evaluated at various stages in their development, first at two years of age, then at four and eight and finally at 10-years-old. The researchers hope to trace underlying mechanisms of brain growth and specialization of individuals with autism. A fifth project focuses on a family of genes and linked proteins found to be associated with forms of autism.

The lead researcher is Ami Klin, the Harris Associate Professor of Child Psychology & Psychiatry in the Child Study Center.

Hollywood buys rights to Daniel Tammet's book

Warner Bros. Pictures has bought the rights to make a movie of Daniel Tammet's book, "Born on a Blue Day," according to Hollywood trade newspaper Variety. See the story here. Tammet is a very smart and interesting young man who has a great facility with numbers and languages and also happens to have Asperger's. Read more about him here: "Brainman" Daniel Tammet's Great Ride.

Ending on a positive note of autism awareness

This story in the online version of the Watertown, Wisconsin Daily Times, reports that sixth-grader Ethan Schlicher won an autism awareness essay contest by penning a piece about his friend, Brandon Baluyot. Ethan wrote:

“The best thing Brandon takes out of our friendship is probably to be respected and feel like any other kid. I have taken wisdom out of our friendship. I have also learned the importance of never judging a person by their appearance or abilities.”

Unconfirmed Diagnosis in Virginia Tech Tragedy; Related Notes on Autism in Korea

In the landslide of media coverage of the Virginia Tech tragedy in which a gunman murdered 32 people and himself on April 16, there was one line that stood out to parents of kids with autism spectrum disorders: the killer in the case, Seung-hui Cho, had been diagnosed with autism, according to a great aunt.

The Associated Press reported that Cho's great aunt said the family had received the diagnosis sometime after emigrating to the United States in 1992. The news service added in a follow-up report that the great aunt "said the family was told in the U.S. that Cho suffered from autism -- but no records show such a diagnosis." (You can read the dispatches here, via The Age newspaper in Australia, and the later story here via Washingtonpost.com.) A long article in the April 22 edition of The New York Times entitled "Before Deadly Rage, a Life Consumed By a Troubling Silence," made much of Cho's lack of speech, his non-existent or extremely awkward social interactions, and a court's declaration of his mental illness, but the report did not mention autism. (If you have seen more definitive information about this case, please post a comment at the end of this article.)

So what are we to make of this?

The facts of the case are important. One could deduce a diagnosis from assembled pieces of media coverage and compare them to the Diagnostic and Statistical Manual of Mental Disorders (the American Psychiatric Association reference which describes autism spectrum diagnosis criteria). But without medical records or a doctor's testimony one would have an incomplete picture of Cho's case.

That uncertainty does nothing for people like parents who already are worried about the negative associations that an autism connection would have on their children. In this community, there are persistent concerns about a negative stigma. There's already an ongoing fight to gain support from society at large, already a struggle for understanding and acceptance. That's why AutismLink.com, an advocacy group and service center in Pittsburgh, issued a statement urging the public not to blame Cho's actions on autism. It is why, in the wake of a murder at a Boston area high school in January, the Asperger's Association of New England urged the public to avoid generating a sweeping negative stereotype about people with Asperger's (for background on that case, see here.)

In an effort to understand this dynamic swirling around the Virginia Tech tragedy, I wrote to Roy Richard Grinker, professor of anthropology and the human sciences at the George Washington University. He has a daughter with autism and he has studied how different societies -- including South Korea -- are dealing with autism. He published Unstrange Minds: Remapping the World of Autism (New York: Basic Books, 2007) and created an associated website at Unstrange.com.

I am going to post Professor Grinker's note in full below, which emphasizes that he is not a doctor and so is not qualified to talk about medical diagnoses. But as a matter of the societies in which Cho grew up, Grinker notes that: "It is unlikely that he would have been diagnosed in Korea. In the U.S. it is also unlikely, if only because Korean-Americans are on the whole very reluctant to seek mental health care (since it is just so stigmatizing). Doctors I've interviewed (including Korean-American doctors) tell me that by the time a Korean person gets to a mental health professional that person may be acutely mentally ill."

Why is that unlikely? Professor Grinker's note below explains more. It's long, but if you read it you get to understand how the ever-changing societies in which we live influence how that society views a disability like autism. Here's the note:

In my experiences in Korea, South Africa, and India, autism, when defined adequately, has been less stigmatizing than the other categories that are more commonly used, like mental retardation, possession by a demon, or, in India, paagol (Hindi), "mad." But illness categories are meaningful only if there is something one can do with them; thus, for many adults today in the U.S. who require public assistance it makes little sense to carry an autism diagnosis in states where services to adults with autism are provided only under the category of mental retardation. Pediatricians and psychiatrists in India, for example, put it quite simply: “What is the benefit to my patients of an autism diagnosis?” Since autism is not well understood in India, and there are few government services for the category of “autism,” they see little point in making the diagnosis. Instead, they use a category everyone knows – mental retardation – even if it is inaccurate. As one physician in New Delhi told me, “The treatments in India for someone with mental retardation and autism are identical.”

In Korea the situation is a bit more complicated. Autism is less stigmatizing than mental retardation but for autistic kids without mental retardation, autism is more stigmatizing for the family than the preferred diagnosis, Reactive Attachment Disorder (which, in cases where there is no demonstrable pathological care-taking environment, can be construed as a version of the refrigerator mother). Here is why autism is more difficult a category for the family as a whole.

In Korea, children American clinicians might diagnose with autism are often diagnosed with reactive attachment disorder (RAD). RAD is sometimes described pejoratively as “lack of love” (aejong kyolpip), a term that, for Koreans, conjures images of orphans craving affection and care. In Korea, RAD is thought to be a condition mimicking autism, caused by a mother’s absence of attachment to her son (this is the Korean version of the “refrigerator mother”). In fact, some clinicians in Korea even prefer to drop the word “reactive,” because, from their perspective, that word identifies the pathology in the child rather than the parent. By calling RAD simply “attachment disorder” (aechak changae), the blame can be more clearly placed on the mother.

RAD is a diagnosis that many parents prefer, even though it directly indicts the mother as a pathological caretaker. First, unlike autism, RAD or lack of love can be ameliorated by giving love; it’s not a permanent condition. An autism diagnosis, however, is seen as a statement that your child has no future. Autism, at least in Korea, is widely considered to be untreatable and many parents who try various therapies, like speech therapy, vitamin regimens, or herbal medicines, give up after a while if their child is not cured. The Seoul-based psychiatrist Dong-Ho Song, who is one of the best trained and busiest child psychiatrists in Seoul, and who is an important member of our Autism Speaks-funded project, had a patient who had been diagnosed with RAD first at the age 18 months and then subsequently by several other doctors throughout his early childhood. He was almost eleven when he came to Dr. Song and received his first diagnosis of autism.

Second, RAD or lack of love is not a genetic condition so it doesn’t impugn the family and harm family members’ marriage prospects in the same way a genetic disease might. This fear of autism as a genetic disorder is found in India and other countries as well, where parents fear that they will be marginalized from the social networks they feel they are entitled to. Thus, while RAD may stigmatize the mother, autism stigmatizes the whole family, past, present, and future.

Third, and perhaps most importantly, the [RAD] diagnosis makes sense to Koreans. Korea has been undergoing rapid social change for the last fifty years, emerging from the total devastation of the Korean War to becoming one of the richest countries in the world. Conservatism and resistance always accompany social change, and women make easy targets. Mothers are entering the workforce in unparalleled numbers, and Korean sociologists and child health experts are responding. They argue that women no longer know how to care for children. They leave their children with grandmothers or nannies and thus cannot bond with their children. Psychologists and psychiatrists thus ask: “Is it any wonder, then, that the children of working mothers have language and social deficits?”

The result is that many Korean parents are unwilling to put their child at risk for being diagnosed “incorrectly” with autism when they are already comfortable with their child’s existing diagnosis of RAD.

Now, as for the shooter at VTECH, Cho Seung-Hui, first, I am not a clinician, as you know. But second, as far as I know from reading the press, there is not much information on him as a child. It is unlikely he would have been diagnosed in Korea. In the U.S. it is also unlikely, if only because Korean-Americans are on the whole very reluctant to seek mental health care (since it is just so stigmatizing). Doctors I've interviewed (including Korean-American doctors) tell me that by the time someone gets to a mental health professional that person may be acutely mentally ill. Again, I am not a clinician, but I suppose it's possible that some clinician somewhere could have at one time used the word autistic as an adjective to refer to -- remember again that I am not a clinician -- the flat affect and introverted personality of someone who would grow up to have schizophrenia. Remember that in the DSM I and DSM II "autism" was mentioned in the criteria for childhood onset schizophrenia. You can see the criteria on my website at unstrange.com

DSM refers to the Diagnostic and Statistical Manual of Mental Disorders from the American Psychiatric Association. Its criteria for diagnosing autism originated with a childhood schizophrenia and has evolved over the years. You can see the link to the criteria to which Professor Grinker refers by clicking here.

How Far Parents Would Travel for A Good Time with Their Autistic Child

Parents are ready to go, and to go far, for a successful outing with their children who have an autism spectrum disorder. The graph above represents the results of a poll Autism Bulletin posted this week, asking parents how far they would travel each way to have a successful, two-hour outing with their autistic child.

Let's stipulate that this is an informal poll, not scientific; in fact, if it's true that the stronger you feel about an issue the more likely you are to participate in a poll like this, then it makes sense that the idea of traveling any distance for a successful outing was the most popular answer.

So far, close to 20 readers responded -- you can still do so here. What's clear from this small sampling is that the idea of a constructive activity in the community has moms and dads ready and willing to get going, and that the top answer reflects a willingness to travel far and wide for such an opportunity.

You can read the original post with the poll question here.