Monday, April 30, 2007

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

Sunday, April 29, 2007

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.

Thursday, April 26, 2007

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.


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.”

Monday, April 23, 2007

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 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, 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

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

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.

Friday, April 20, 2007

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.

Wednesday, April 18, 2007

CDC Director Cites Autism as Urgent Concern, and Other News

Autism is an urgent priority for the Centers for Disease Control, according to director Dr. Julie Gerberding (pictured at left). Gerberding told a Senate panel on April 18 in Washington that she understands the frustrations of parents and families of people with autism spectrum disorders that there are not available "more answers about the causes and possible cures," she said, according to a report in The Atlanta Journal-Constitution (see article online here).

Gerberding also said: "The profound lifelong impact of autism spectrum disorders, tremendous costs to the affected individuals and their families, the lack of known causes or cures and concerns about the increased rates of diagnosis all make autism spectrum disorders one of our urgent realities."

The Journal-Constitution added:
"Although the CDC has been criticized by some autism activists and members of Congress, Gerberding said the Atlanta-based agency is best equipped to do the surveillance and research needed to understand and respond to the disorder."

Gerberding was speaking to the Senate panel while elsewhere in Washington, The Institute of Medicine was holding a special workshop on opportunities for researching environmental triggers for autism. The Institute website said it was expecting to set up space for an overflow crowd, based on its fully subscribed preregistration process.

For a preview of this autism-environment workshop, see here.


There was talk in the House this week about two bills:

Rep. Michael F. Doyle, D-Penn., filed HR 1881, an act "to improve support and services for individuals with autism and their families." Doyle, who is from the Pittsburgh area, filed the bill on April 17 with three co-sponsors, New York Democrat Eliot Engel, New Jersey Republican Christopher Smith and Mississippi Republican Charles "Chip" Pickering.

The bill would spend an estimated $350 million to improve services for people with autism and their families, according to an online report from the Pittsburgh Post-Gazette. See the report here. While the newspaper doesn't cite a companion bill in the Senate, Doyle's proposal sounds like one unveiled last month by Senators Hillary Clinton and Wayne Allard. For more on that proposal, called The "Expanding the Promise for Individuals with Autism Act," click here.

Smith told the Post-Gazette he is optimistic that President Bush will support this kind of legislation.

In another piece of legislative news, the Atlanta Journal-Constitution story cited above reported that two House members, Dave Weldon, a Florida Republican, and Carolyn Maloney, a New York Democrat, planned to reintroduce a bill they filed last year to end what they call a conflict of interest at the Centers for Disease Control relating to vaccines: that the agency is responsible for both promoting vaccines and ensuring their safety, the newspaper said. The bill failed last year.

Pennsylvania Bill Would Require Insurers to Cover Autism Treatment

At the state Capitol in Harrisburg, Pennsylvania House Speaker Dennis J. O'Brien, who has an autistic nephew, told a gathering of several hundred autism advocates that he was pursuing "legislation that would require private health insurers to cover treatment" for autism spectrum disorders, the Associated Press reported. See the report here, via The AP's estimates suggest that when applying the latest CDC autism prevalence figures of 1 in 150 American children, that means approximately 560,000 children and young adults have autism.

Canada's Top Court Won't Hear Case Brought by Parents of Autistic Kids

A group of Ontario parents have been seeking court ordered support for behavioral therapies which in the United States is typically called ABA (applied behavior analysis) but in Canada is sometimes called IBI for intensive behavioral intervention. The Supreme Court of Canada said April 13 that it would not hear the parents' latest appeal in the case.

The Ontario Autism Coalition says on its home page that while the court would not hear the case, the advocates would continue to press for legislative relief to support these therapies under Canada's national health care plan.

Read press reports here on the court decision here in the Toronto Star and here from the Sarnia, Ontario Observer.

Also see:

Canadian Parliament Panel Urges New National Policy

Sunday, April 15, 2007

How Far Would You Travel for a Successful Outing With Your Autistic Child?

On Sundays near where we live, there's an "open gym" for children with autism and their families. The program is free -- supported by grants from organizations such as the Autism Alliance of Metrowest and Toward Independent Living and Learning -- and available on Sunday afternoons for the coldest six months of the year. Its attractions include a mini-trampoline, platform swings and other swings, a couple of pole-vaulters pads to jump into and other play equipment.

It's not what you'd call fancy, and it's mom and dad who provide the supervision here. But in the constant search for constructive activities and supportive environments, we've come to rely on it. So much so that our children, one who is on the autism spectrum and another who isn't, each mentioned the idea of saying goodbye to Paulie, the great guy who acts as host and safety-rules keeper, before we left today, the last session until the fall.

This gym is a place to meet other parents and sometimes you end up giving or gleaning tips about coping with different issues; many other times, you just nod to each other and offer silent support.

Today, one mother told us it was nothing to travel 30-plus minutes with her two kids to visit this open gym and, after thinking about it, I agreed with her. It made me wonder how valuable such a constructive family time is to other parents around the country. And so I'm asking you with this poll below. How far would you travel for a successful outing with your autistic child?

E-mail subscribers who cannot see the poll question can go here to vote.

How far would you travel (each way) for a successful two-hour outing with your autistic child?

Powered by Quimble

Also see:

What Do You Tell the E.R. Staff About Your Child's Autism?

Friday, April 13, 2007

Don Imus, Loud Advocate for 2006 Autism Bill, Loses His Soapbox

After a racist and sexist outburst aimed at the African American players on the Rutgers University women's basketball team last week, radio "shock jock" Don Imus lost his job broadcasting a syndicated daily radio and cable television show, "Imus in the Morning." Both the CBS Radio Network, which syndicated the Imus show nationally on the air, and NBC News, which simulcast the show via the MSNBC cable network, cancelled the show. You can read the CBS announcement here, and the NBC announcement here, and see a Today show video clip with the head of NBC News, Steve Capus discussing this decision, here.

Both Imus and his wife Deirdre were staunch supporters of the Combating Autism Act which Congress passed last year. Don Imus used the soapbox of his radio and television shows to advocate for the legislation -- and especially to decry the efforts of Rep. Joe Barton, a Texas Republican who held up the bill in a House committee over the summer before releasing it during a lame duck session of Congress. Imus prompted a flood of phone calls to Barton's office, making the Congressman a target of advocates and additional media scrutiny.

There's no question that the air time Imus used made a positive impact on a piece of legislation that many hope will make a concrete difference in the lives of Americans with autism spectrum disorders. (See related story, "2006 Autism Advocates of the Year," here.) This was not the only cause Imus signed up for, either; in his last broadcast on April 12, Imus raised money for three charities including his cattle ranch which hosts kids with cancer, and another related to sudden infant death syndrome. This was his eighteenth year doing such a radiothon, The New York Times reported.

For people who have followed Imus for years, the hateful speech he spewed against a women's basketball team, calling them "nappy-headed ho's" fit into a long-running pattern. Gwen Ifill, the television journalist and host of Washington Week on PBS, cited Imus' history of racist, anti-Semitic and offensive remarks in moving remarks on television this evening and in a moving opinion article in The Times this week. Her point: why should a middle-aged white guy with a microphone feel the need to verbally beat up a group of young women who look different than he does?

"This country will only flourish once we consistently learn to applaud and encourage the young people who have to work harder just to achieve balance on the unequal playing field," Ifill wrote. "Let’s see if we can manage to build them up and reward them, rather than opting for the cheapest, easiest, most despicable shots."

We would want that kind of attitude for disabled children and adults with autism, of course. To create a country where we applaud and encourage them. And build them up, in spite of the challenges they face. Because we know they are susceptible to their share of cheap shots from people who won't or can't understand them and their disabilities.

I write this not having listened to Imus' show much -- a few times, to be honest -- but it's difficult to reconcile these two portraits of the man: one who chose to use a mass medium to sway a portion of the public that the nation needs a law to help a group of disabled people. And one who developed a legacy of hateful speech which ended up costing him his job, and with it, his platform.

Sunday, April 08, 2007

In Special Autism Issue, Medical Journal Cites Economics, Early Diagnosis

Cover The American Medical Association's Archives of Pediatrics and Adolescent Medicine published a special autism edition for its April 2007 issue that includes coverage of four important issues including the costs of autism services, a simple test for early diagnosis, the influence of autistic children on the development of younger siblings and an editorial citing the benefits of early diagnosis and treatment and more.

You can find good information about the articles in this issue by going to this resources website set up for the media. With one exception, the full-text versions of the articles are available online only to subscribers or for a fee. This article provides information on two of the articles. A future post will cover more information from this journal. Here is a rundown of the two articles, starting with the piece that is available free online.

1. The Costs of Autism Cases.

Autism costs society an estimated $3.2 million per patient for medical and other services and indirect costs including lost productivity taken over life of a person with autism spectrum disorder. That's according to Boston-based researcher Michael L. Ganz of Abt Associates and Harvard School of Public Health. Ganz's projections cover the life of a hypothetical group of people, born in 2000, and diagnosed with autism in 2003, and his report projects the costs out, in real dollars to the year 2066. He notes that the costs start off very high, then taper off and then "spike again in early adulthood, due to things like adult care and lost productivity. From the press release on Ganz's report:

“Direct medical costs are quite high for the first five years of life (average of around $35,000), start to decline substantially by age 8 years (around $6,000) and continue to decline through the end of life to around $1,000,” Dr. Ganz writes. “Direct non-medical costs vary around $10,000 to approximately $16,000 during the first 20 years of life, peak in the 23- to 27-year age range (around $27,500) and then steadily decline to the end of life to around $8,000 in the last age group. Indirect costs also display a similar pattern, decreasing from around $43,000 in early life, peaking at ages 23 to 27 years (around $52,000) and declining through the end of life to $0.”

Over an individual’s life, lost productivity and other indirect costs make up 59.3 percent of total autism-related costs. Direct medical costs comprise 9.7 percent of total costs; the largest medical cost, behavioral therapy, accounts for 6.5 percent of total costs. Non-medical direct costs such as child care and home modifications comprise 31 percent of total lifetime costs.

Because these costs are incurred by different segments of society at different points in an autistic patient's life, a detailed understanding of these expenses could help planners, policymakers and families make decisions about autism care and treatment, Dr. Ganz notes. "Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood," he concludes.

Parents will note that Ganz concludes the results of his study suggests "that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood."

Noted. You can see an online version of this study, "The Lifetime Distribution of the Incremental Society Costs of Autism," including statistical tables, by clicking here.

Also noted: autism costs society more than $35 billion per year in direct and indirect expenses, Ganz writes.

2. A simple, early autism test: If baby doesn't respond to name at age one, watch for diagnosis of developmental delay.

Researchers found that 12-month-olds who don't respond when their names are called "may be more likely to be diagnosed with an autism spectrum disorder or other developmental problem at age 2" -- and so pediatricians should do this simple test at one-year checkups to rule out such a diagnosis or identify children who need further monitoring.

Baby responding to her name is "one of the most consistently documented behaviors in infancy that distinguishes children later diagnosed with autism from those with typical development or developmental delays," the researchers write in this report. The driver for this study is the potential for early intervention making a real difference for children diagnosed with autism spectrum disorders. See an abstract of the study, "A Prospective Study of Response to Name in Infants at Risk for Autism," here.

Researchers at the M.I.N.D. Institute at the University of California at Davis, the University of California at Sacramento, and the University of California at Los Angeles performed the study. They looked at children who were younger siblings of children who had autism, and therefore have a risk for ASD, and a control group. At age 12 months, the researchers write, 100 percent of the control group responded on the first or second name call, while 86 percent of the children in the risk group did.

Also see: "60 Minutes" reported about the M.I.N.D. Institute research into early diagnosis. See more about that here.

Thursday, April 05, 2007

Autism Awareness Month Coincides with Uptick in National Media Coverage

Maybe it was the 14-state study published by the Centers for Disease Control that shows the prevalence of autism spectrum disorder cases is 1 in 150 children. Maybe recent news reports about the interesting research into the origins of autism, including genetic traits and environmental triggers have an influence. Maybe the awareness and advocacy efforts of groups big and small have made a dent in the national consciousness. Or maybe it's simply that everyone -- including the producers and editors who work at national media outlets -- knows a family affected by autism and "Autism Awareness Month" lends a good reason to cover the issue with an emphasis on explaining what autism is, how it's diagnosed and the issues families face.

Among the pieces this week:

* National Public Radio on April 5 broadcast a brief report about the Interactive Autism Network, a new program at the Kennedy Krieger Institute in Baltimore, to connect parents to information about research into autism spectrum disorders and how they may be able to participate.

The report preceded a profile of Eunice Kennedy Shriver who founded the Special Olympics and who has been a lifelong advocate for people with cognitive disabilities. The report, which you can find here, conveys one person's indefatigable commitment to achieving respect and acceptance for people with disabilities. Here's a short excerpt from the piece:

Every year, Shriver brings a parent of a disabled child and someone who works in disabilities to Washington. They work on Capitol Hill for the year, then most go back to their states, where they have become a new generation of leaders.

Earlier this month, more than three dozen former Kennedy Fellows gathered in the ballroom of a Washington hotel to hold their first-ever reunion. There was a sense in the room that this might be a last chance to honor Shriver. She has been hospitalized several times; two years ago she had a small stroke.

Shriver stepped carefully to the podium. When she got there, she made clear that she will keep fighting for people with intellectual disabilities.

"We've got to be so proud of what our special friends do and their future," said Shriver, "Their possibility of really bringing to the world something that really resembles peace and hope and faith and love – that's what they can do. And we're so proud of them. And we want to keep going all the time, the next 20 years. I'm going. You come with me?"

* ABC News has broadcast several pieces this week. One well-done piece from the April 4 edition of "Nightline" highlights the social problems and bullying faced by young people -- a sophomore at Ramapo College in New Jersey, and an adolescent in Millburn, N.J., Middle School -- growing up with Asperger's syndrome, and the efforts that they and educators are making to form social relationships. You can see a video version of the story here, and a text version of the story here.

Another piece from "Good Morning America" discusses how to recognize the signs of young children with autism. This video segment (see it here) takes less than two minutes, but vividly shows an infant, alert at 6 months, turns into a shy one year old and then a two year old who can't attend to someone calling his name or seeking his attention.

* The Oprah Winfrey Show on April 5 dedicated an hour to "The Faces of Autism," a program that was scheduled to include clips from the Autism Speaks video "Autism Every Day," as well as a pediatrician who is mother to two sons with autism spectrum disorders. For more on the show, see this website.

We should expect more programs to come this month. If you find a particularly interesting broadcast or report related to autism, you can share a comment here or send me an e-mail at michaelsgoldberg AT yahoo DOT com.

Also see:

Nick News Focuses on Autism April 22

MTV's "True Life" Features Teens with Autism

Very Early Diagnosis Subject of "60 Minutes" Story

Sunday, April 01, 2007

Nick News Focuses on Autism on April 22

Nick News with Linda Ellerbee, the award-winning children's news program on the Nickelodeon cable network, announced it is going to "look at the lives of kids struggling with different levels of autism" in the show "Private Worlds: Kids with Autism" which premiers April 22 at 8:30 p.m. eastern and pacific times.

You can read a press release on the show here. See the Nick News website here.

The press materials explain that Ellerbee's show covers everything the "regular" news covers -- from President Clinton's impeachment to the issue of genocide from the Holocaust to the Sudan -- only for a children's audience. Notes on this autism program, which of course coincides with autism awareness month, convey a plain-spoken, down-to-earth style and include the following:

Private Worlds: Kids and Autism begins with the story of Andrew, a severely autistic fifth grader. It's difficult to understand what life is like for Andrew because he can't communicate his feelings. His family can't go places or do things with out considering his needs, or without worrying he might do something inappropriate in public. Though Andrew will never get entirely better, the family is doing what it can to make his life as full as possible.

The special also introduces viewers to Bond, a 15-year-old with Aspergers Syndrome, generally considered a more high functioning form of autism. He's smart and articulate, but still has problems socializing. Temple Grandin tells her amazing story through her groundbreaking books about being autistic, and implores kids not to tease their autistic classmates. Matt is fourteen and has "Savant Syndrome," which means he possesses an extraordinary gift, in his case, the ability to play the piano. "Savant syndrome" is rare, but it happens.

A final segment highlights how other kids can be a part of the lives and worlds of kids with autism. We meet kids who are part of a special hockey program where kids with autism play with typical kids. Their story shows us that kids with autism have a lot to offer as friends. Private Worlds also features commentary from kids who are not autistic, but speak about what it's like to be around kids who are.

Also see:

MTV's "True Life" Features Teens with Autism

CNN's Larry King Live" Features Autism Talk on March 21