Useful Article to Explain Autism Diagnosis to Kids

The Interactive Autism Network has posted a clearly written article designed to help parents discuss an autism spectrum disorder diagnosis with their child. The article, ASD Diagnosis: What Do We Tell the Kids? uses sensitive language and explanations that outline how kids with autism have many different profiles. It has information for siblings, too.

These elements all make the article useful for families who are looking to understand how to communicate with their children—and also makes it potentially valuable as a tool to help explain what is going on in your family to others, from grandparents and extended family members to friends who may have trouble relating to what's going on in your house.

The article explains:

"Each individual with ASD is different. Some are diagnosed at 2 and others at 12. Some are spending their day in a protected special education environment, and others are out in typical elementary, middle, or high school classrooms with some level of assistance, or none at all. Some are intellectually disabled, and some have IQs in the normal or even gifted range. Regardless of intellect, emotional maturity generally lags behind that of typical peers. All of these factors, and more, will influence a parent’s decision about when to inform a child about the ASD diagnosis."

The article encourages parents to "assess what your child already knows and is ready to hear" and to explain the news at the right level, to be positive about a child's capabilities and, overall, to tailor the information to a child's own situation while explaining that autism is "a different kind of disability."

"People have a disability when something isn't working quite right, and they need extra help because of it. For example, a person who is blind may need a seeing-eye dog. People with ASD have a different kind of disability. They can see just fine, but they have trouble with other things. Sometimes they get 'stuck' on a behavior or topic, and they have a hard time understanding how other people think and feel—that's why sometimes it's hard to figure out what people want, or how to make friends. People with ASD need extra help with these things."

This article includes a list of references to research articles and additional resources including other articles from the National Autistic Society in the U.K., from the Autism Society of America, as well as links to resources for families, adults looking at what kinds of information to disclose to employers and others, the well known Sibshops support group for siblings of people with disabilities, and publishers who specialize in books about autism.

This is the kind of article, even if you are not ready to discuss anything, will help you lay the groundwork to study the issue so you can make informed decisions later. Take a look.

A Survey for Parents of Kids with Autism to Help Design Parenting Courses

At Lesley University in Cambridge, Mass., educators are planning a set of courses specifically designed to help parents of children with autism spectrum disorders. Elizabeth Stringer Keefe, the coordinator of the Severe Disabilities Graduation Special Education Program at Lesley, has posted a survey for parents to fill out online. It's anonymous, takes about 10 minutes to answer 10 questions, and the responses collected about the kinds of services children are receiving, and what concerns parents have, will guide the course designers.

Click on this link to take the survey.

I learned about this survey after writing to Elizabeth to ask about a day-long program on April 10, 2010, at the university, Realizing the Full Potential of Students with Asperger's Syndrome. The program is for special education administrators, teachers, occupational therapists, speech and language pathologists, psychologists, other educators as well as parents. The fee for the event is $65 and proceeds go to benefit the Asperger's Association of New England, an important advocacy and education group based in the Boston area.

The program includes four speakers, including Ellen Korin, a special educator and author of Asperger's Syndrome An Owner's Manual; Stephen Shore, a professor at Adelphi University and author of Beyond the Wall: Personal Experiences with Autism and Asperger's Syndrome, among other works; Karen Levine, a developmental psychologist and instructor at Harvard Medical School who co-founded the Boston Children's Hospital Autism program; and Ross Greene, associate clinical professor of psychiatry at Harvard Medical School and author of The Explosive Child.

This Asperger's program is the third annual speakers event Lesley has organized. Here is what Elizabeth explained to me in an e-mail:

Having been a classroom teacher, a consultant (I still consult to schools in the area of ASD) and now a university professor, I realize more than ever that training for those who work with children with ASD must go beyond standard teacher licensure. This is an area of specialty that cannot be covered to the extent necessary in teacher licensure programs, unfortunately, and requires a specific skill set and understanding. So, calling for specialized training for those working with kids with ASD is one initiative of my program.

In recognition that the cost of training is sometimes an impediment to teachers, parents and other professionals, I made a second initiative of the program the commitment to provide low-cost professional development for anyone working with this population.

And lastly, a third initiative of my program is to support our non-profit community partners, who support families and professionals outside of school settings. In my view this sets a good example for both the teachers that leave my program and for other colleges and universities. So, the last 3 events I have hosted for the series are charity events for a non-profit, with 100% of proceeds going to support the organization (my time is donated as well). This year I also asked Ellen Korin, and Drs. Levine, Greene and Shore to donate their time and they graciously obliged.

One consequence of the rising incident of autism spectrum disorders is an increase in the number of parent education opportunities. Finding the time to attend one of these events can be difficult—but it's essential to check out the opportunities near you, if only to understand what's going on. Especially in challenging seasons as the parent of someone with autism, it helps to see that these events are happening because it demonstrates that you are not alone, that there are people working to provide information, ideas, approaches to help.

One last point about educational events: if it costs money to attend, make sure to check out the source who is providing the information, to see if it is reputable. Or, simply seek out an event that's free of charge to attend (for it's possible you will have to pay for child care, already).

Support Group for Siblings of Disabled Now on Facebook

The Sibling Support Project, a Seattle-based non-profit group that works to help siblings of people with disabilities, has started an online group on Facebook, the huge social networking website. You need to join Facebook's free service to become a part of the group. Learn more about that by visiting the SibNet on Facebook page.

This is clearly more of a benefit to the adult siblings of people with disabilities. It's a valuable reminder for families of children with autism spectrum disorders that the needs of siblings continue on as kids grow up.

If you pay attention, there's a stream of media coverage that gets at the issue. National Public Radio broadcast a piece on January 1 about Marissa and her younger brother Andrew Skillings, who is 11 and has Asperger's, a form of autism. You can read, see photos and hear about their relationship by clicking on "Coping with an Autistic Brother" at npr.org. Here's a quote from Marissa:

"Sometimes, if I get really frustrated, I just wish I could change everything: Sell him to the zoo and buy new parents," Marissa says. "But then the times when I'm actually appreciating things and I'm not in the moment when I'm steaming mad, I do appreciate what I have."

"I don't think I'd change anything, 'cause this is my life and this is what I'm used to. Andrew wouldn't be like the Andrew I know and love if he was different, because autism is his whole personality."

You can find more articles related to siblings on Autism Bulletin.

Autism Advocates Scheduled to Meet with Obama Transition Team

A small group of autism advocates are scheduled next week to discuss disability and health care policy with President-elect Barack Obama's transition team, according to one of the advocates invited to the event.

Ari Ne'eman, president of the non-profit organization Autistic Self Advocacy Network (ASAN), has communicated with other advocates for people with autism that he was invited to speak with members of Obama's team, and said he seeks input from others in the community. In an e-mail message distributed by The Autism Acceptance Project, Ne'eman, wrote:

Early next week, the Autistic Self-Advocacy Network (ASAN) has been invited to give input to the Office of the President-elect at two meetings relating to disability policy in the upcoming administration. The first meeting will focus on autism policy issues specifically while the second will focus on health care policy from the disability perspective. The meetings will be small, intimate and include representatives from several other autism and/or disability organizations as well.

I'd like to take this opportunity to invite people to give their thoughts as to what issues matter to them in relation to Autism Policy and Health Care Policy in the upcoming administration. We've been asked to take 2-3 policy priorities into the first meeting and will want to represent some of the specific needs of autistic self-advocates in the second. As an organization that seeks to represent the needs of the community of autistic people and to fight for the rights of ourselves, our families and our supporters, we want to hear from you.

The Autistic Self Advocacy Network is based in Washington, D.C., and was founded by Ne'eman, who explains in his website biography that he's a student at the University of Maryland-Baltimore County. Ne'eman, who has been diagnosed with Asperger's, runs this group along with others with autism spectrum disorders. The group's website notes: "ASAN's public policy initiatives involve advocating for greater support and understanding for adults and children on the autism spectrum."

What priorities would you advocate? Here's the contact information for Ari Ne'eman via e-mail: aneeman@autisticadvocacy.org.

Also see:

Autism Society Urges Families to Voice Concerns to Obama's Transition Team

Audio: Interesting Show on Autism at "Studio 360"

"No matter how hard he tries he knows he can't fit into the NT [neurotypical] world."

That's how radio producer Tamar Brott describes Jonthan Mitchell, a 52-year-old writer who has Asperger's. He is very high-functioning on the autism spectrum, and he writes stories that delve into his feelings of alienation, longing, obsession and rejection of special education programs. A profile of Mitchell is the first five-minutes of an illuminating hour-long public radio program on the arts and society at Studio 360 with Kurt Andersen.

A key reason you might want to listen to the program is Andersen's conversation with Blythe Corbett, assistant professor of clinical psychiatry, at the M.I.N.D. Institute, University of California at Davis. The Institute is a leading venue for autism research, and Corbett discusses in very clear language how scientists are examining research trends in genetics, environmental and other threads of inquiry to help them understand the origins of autism spectrum disorders. (The gist is that researchers are in the early stages of their work, and they are looking at a combination of factors that could include genetics, environmental factors, parental age and more.)

Below, find an audio clip of the first 11 minutes of the episode, which profiles Mitchell and introduces the rest of the show:

Other parts of the show discuss an art project organized by the M.I.N.D. Institute, and discussions of Amanda Baggs, a well-known autistic video blogger and neurodiversity advocate, and the film Autism: The Musical.

Find the Studio 360 website with a writeup of this episode by clicking here.

Autism Bulletin's 2007 Advocates of the Year

The past year saw important news for the autism community, including a big push by the American Academy of Pediatrics to make its members more aware of the need to diagnose autism spectrum disorders early, and big wins in South Carolina and Texas by advocates seeking to get health insurance companies to cover autism services.

Autism Bulletin's 2007 Advocates of the Year list includes the people and organizations behind those big events. It also includes other people and groups who made a difference—including a number of individuals nominated by readers. Thanks to everyone who shared their thoughts on these individuals' important efforts. Here are the picks for Autism Bulletin's advocates of the year:

The American Academy of Pediatrics.
It was big news in the fall when the American Academy of Pediatrics issued a call for doctors across the United States to offer routine diagnostic screenings for autism spectrum disorders. The group that has 60,000 members also published papers to educate its members about autism and what treatments offer important help for people on the spectrum, and a special package for doctors to educate themselves about ASD. The move is important as an awareness campaign, but its impact could have larger repercussions as it firmly legitimizes therapies such as Applied Behavior Analysis (ABA) which some insurers, school officials and medical professionals considered "experimental" and provides concrete baselines for service levels (25 hours per week, 12 months per year) for such therapies.

The South Carolina Parents Who Won "Ryan's Law."
There were tears, hugs and celebrations in the lobby of the South Carolina capitol building last June, and they were justified: the state Legislature had just overridden the governor's veto to pass legislation that requires health insurers to cover services for children with autism up to age 16. Not only did these parents and other advocates led by Lorri Unumb (Ryan's mom) and Lisa Rollins work tirelessly to educate state lawmakers about the need—and relatively modest costs—for such coverage. They have organized advocates from around the nation to share strategies and tactics to work for similar legislation in others states. We saw legislation pass in Texas and have been watching as advocates working in Michigan, Arizona, California and Florida, among other states, seek to follow South Carolina's lead.

Sandee and Jeff Winkelman, Who Argued for Parents' Rights (and Won).
The parents of Jacob Winkelman of Parma, Ohio, fought and won the right for parents across the nation to argue on behalf of their disabled children in federal court. In a 7-2 decision in May, the U.S. Supreme Court ruled that federal special education law grants parents "independent, enforceable rights" separate from their children and therefore they can pursue those rights in court—without a lawyer if necessary—so they can advocate for their child to receive a free and appropriate education. Other parents of autistic children understood the Winkelman's plight: when you have to pay tens of thousands of dollars for autism-related services and schooling, who has the money for a lawyer to fight for services in court? The Supreme Court said they didn't have to be lawyers to fight the good fight.

Senator Hillary Rodham Clinton.
Clinton, the New York Senator who is in a dogfight for the Democratic presidential nomination, this year demonstrated a willingness to be a front-and-center advocate among policy makers in Washington D.C. for people with autism and their families. In March, Clinton and Sen. Wayne Allard, a Colorado Republican, filed legislation that would expand autism services and research. Then this fall, on the campaign trail, Clinton made the loudest call for increased spending on research, education and support services for people with autism, pledging to spend $700 million per year if elected. Yes, it's that time of the political season when we hear lots of promises. And other candidates (only Democrats so far) have noted the need to do something more for people with autism. But no one else has made such pointed, specific proposals for autism. At least not yet.

The Asperger's Association of New England.
It was almost a year ago that a murderous stabbing in a Lincoln-Sudbury High School bathroom in the Boston suburbs shocked the region where I live. It turned out that the 16-year-old who allegedly killed a fellow student has an Asperger's diagnosis, a fact which his lawyer has made central to his defense. The Asperger's Association of New England took it upon itself to invite the public to discuss the diagnosis and assert that physical violence is not at all typical of people with the condition. The group's leaders fielded many media calls and sought to enlighten the public and spread awareness about Asperger's. A footnote to the tragedy: local media have reported the special education program which the Asperger's student attended is no longer hosted at the high school.

Angela Mouzakitis, BCBA.
ABA needs more voices like that of Angela Mouzakitis. Mouzakitis publishes the blog Applied Behavior Analysis: Current Topics, and is a board certified behavior analyst (BCBA) who teaches in the graduate special education program at City University of New York's Queens College. Her essays are always professional, sometimes technical and academic—but throughout she conveys a passion for helping kids on the autism spectrum, for creating new educators who share her passion. Along the way she demonstrates an open-minded approach to practitioners of other kinds of therapies.

Parents and Siblings Who Teach Others About Autism

Karra Barber is the mother of a teenager with Asperger's Syndrome who has brought energy to her advocacy work in California. Her website has a useful list of Asperger's support programs in California, among other resources. A reader writes that she was a leader in the founding of a summer camp for film-making for kids who have trouble communicating at Saint Mary's College in Moraga, Calif.

Morton Ann Gernsbacher, a psychology professor at the University of Wisconsin at Madison and past president of the Association for Psychological Science, has made understanding autism one of her research priorities since her son received an autism spectrum disorder diagnosis. An Autism Bulletin reader notes that Gernsbacher's work to make therapists aware about autism and to battle prejudicial perceptions of people with ASD is essential.

Renee Henderson, a Philadelphia-area mother and advocate, has established a group called Autism Sharing and Parenting, which organizes support groups and parent workshops in Philadelphia and Montgomery Counties in Pennsylvania. A reader writes that Renee, who started the group three years ago, spends many hours helping families make daily picture schedules using Boardmaker, and providing a helpful and supportive ear, and adds: "She is making a difference by teaching parents how to become better advocates for their children, by providing parents with the information, tools and resources needed to improve their quality of life."

Nicholas Lombardi, who is now 12, was in the mall with his younger brother Joey and his mom when Joey took off his shoes and started running. "As the people stared I found my self very angry," Nicholas writes in an essay published on the Autism Speaks website. "Not at him, not really at them, but maybe at autism. I wished there could be a way… to have people understand. A voice." Nicholas decided to create a button for his brother and other autistic kids to wear that says "I'm not misbehaving, I have autism. Please be understanding." Sales of the button in English and Spanish, has raised more than $8,000 so far at Autism Speaks online store.

Recognizing Continued Advocacy Efforts

As noted in the 2006 list of advocates, there are a number of organizations who deserve credit for their ongoing efforts on behalf of people with autism and their families. These include advocacy organizations like the Autism Society of America (which this year announced a partnership with Easter Seals to improve access to services), and Autism Speaks (which merged with Cure Autism Now). Though both groups are large and as such, have their critics and controversies, they are amassing the resources needed to make a national impact.

Others who have continued and expanded their worthy efforts include:

* The center builders, such as The Friends of Children with Special Needs in Fremont, Calif. and the Autism Center of Pittsburgh, an outgrowth of the advocacy and support work at AutismLink.

* Medical researchers. The projects funded by public and private sources, both in the United States and abroad, are aimed at new understanding of autism's potential causes and treatments. See "Large Children's Health Study Cites Autism as One of Key Target Areas" and "British Researchers Unveil Brain Imaging Center" as two examples.

* Educators. This year, Autism Bulletin started an autism schools map project to build a directory for parents seeking options. The map is filling up with examples of organizations committed to helping kids, from the Claremont Autism Center in California to the Connecticut Center for Child Development to the Florida Autism Center for Excellence (FACE) School in Tampa.

Others Worth Noting

* Ivan Corea and others at the National Autistic Society in the United Kingdom, whose advocacy and awareness efforts included a meeting with former Prime Minister Tony Blair.

* Writers who shared their experiences as parents, including Roy Richard Grinker and Portia Iverson. And Tim Page, who wrote movingly of growing up with Asperger's.

* The British author Nick Hornby, who uses his success to sustain the TreeHouse school in London he helped to found, and even from time to time, uses his book reviews in The Believer to spread awareness, though his own experiences, when he writes about autism.

* IEP Advocates like Barbara Ball of Newton, Mass., upon whom parents rely for advice and support.

Thanks to all of these individuals and organizations for their efforts.

Autism Bulletin Featured on AutismPodcast.org

Usually at Autism Bulletin, there's an effort to share answers and insights for parents of kids with autism spectrum disorders. So it was an interesting experience to be a guest on Michael Boll's Autismpodcast.org to talk about my work on this blog and also about being the parent of a young child on the spectrum.

You can find the recording of the conversation by clicking here.

Michael Boll is a teacher by training and, like many Autism Bulletin readers, he found himself thrust into this role of having to learn all about autism spectrum disorders, what to do about it to help his son and family, all the while carrying on with other parts of his life.

If you are new to Autismpodcast, the website hosts 61 episodes and counting. They include talks with Andy Bondi and Lori Frost, the founders of the Picture Exchange Communication System (PECS), Steven Gutstein, founder of Relational Development Intervention (RDI) and Alex Plank, creator of wrongplanet.net, an online resource for people with Asperger's.

Top Autism Bulletin Posts, August 2007

Usually this quick roundup looks at stories published during the previous month that resonated most with readers. This month I've collected the list without regard to when an article was posted, since National Public Radio's story about autism insurance coverage included a link to Autism Bulletin, the most-read stories all had to do with that issue. (See more about NPR's story, including a summary of the coverage and links to it, by clicking here.)

The top five stories are:

1. Map of State Autism Insurance Laws, Updated
(July 16, 2007)

2. Texas Governor Signs Autism Insurance Bill
(June 17, 2007)

3. Colorado Passes Early Intervention Plan That Applies to Autism, and Other Legislative News
(May 16, 2007)

4. South Carolina Legislature Overrides Veto to Pass Autism Insurance Law
(June 7, 2007)

5. Pennsylvania House Passes Autism Insurance Bill; Fate of Measure Unclear
(July 16, 2007)

Most popular "Labels" or "Tags" this month:

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

SOURCE: Google Analytics

A First-Person Account of Growing Up with Asperger's

In the years since the phrase became a cliché, I have received any number of compliments for my supposed ability to "think outside the box." Actually, it has been a struggle for me to perceive just what these "boxes" were—why they were there, why other people regarded them as important, where their borderlines might be, how to live safety within and without them. My efforts have been only partly successful: after fifty-two years, I am left with the melancholy sensation that my life has been spent in a perpetual state of parallel play, alongside, but distinctly apart from, the rest of humanity.

That is how Tim Page, a journalist, Pulitzer Prize-winning music critic and author describes his life growing up with Asperger's before the term was commonly known, in a passage from his moving essay titled "Parallel Play" in the August 20 issue of The New Yorker. The magazine recently beefed up its website, but it doesn't include every article online; if you have someone in your life with Asperger's, it would be good to get a copy of this issue.

Page, who is 52, was diagnosed in 2000. He spoke with "All Things Considered" host Robert Siegel on August 13 (find the six-minute-long interview here). In their conversation, Page says he was very young, three or four years old, when his family understood something was different about his development. "It was a question of what that difference was," he says, adding that he had some strengths along with many weaknesses.

Growing up, Page says he did poorly in school, and educated himself on details that interested him. Later, he found a copy of Emily Post's book "Etiquette" and found that by poring over it, he learned to understand some of the nuances of people's behavior which he otherwise could not comprehend. "It explained to me why people behaved the way they did. I got the gist of it. I got the idea of why people didn't talk on and on about things," he says.

Page says that his diagnosis helped him make better sense of his life, and he wished to help some others like him by writing about his experience.

"I'm much more drawn into the human race. I'm happier, more in control," Page says. Asperger's "is not something that goes away. There is no cure for it, but there is living with it. It's a different way of processing information. It can be quite difficult when you are young."

Most Popular Articles on Autism Bulletin, May 2007

The top five stories posted in May 2007:

1. 17 States Require Some Insurance Coverage for Autism Services, Recent Survey Finds

2. Why Families with an Autistic Child Need to Celebrate Mother's Day Frequently; Plus Some Suggestions

3. Colorado Passes Early Intervention Plan That Applies to Autism, and More Legislative News

4. Question for Parents of Autistic Kids: How Often Do You Take a Break?

5. U.S. Supreme Court Affirms Parents' Rights in Case Involving Autistic Child


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

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

SOURCE: Google Analytics.

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

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.

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

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

MTV's "True Life" Features Teens With Autism

MTV's "True Life" series features documentaries that tell the stories of young people from their point of view. Past editions of the show (see website here) have brought viewers into the lives of young people who are trying to lose weight, working to survive high school, trying to make it in Las Vegas, moving back in with Mom and Dad.

The episode scheduled to show March 18 is called "True Life: I'm Autistic" and it features profiles of three teens with different profiles, all on the autism spectrum. Author and advocate Valerie Paradiz has posted background information on the show which features her 16-year-old son Elijah Wapner, who has Asperger's and has worked as stand-up comedian in New York City. In this piece written a year ago during the filming of the show, Ms. Paradiz explains that she hopes the show will give her son -- whom viewers can see and especially hear during his own voiceover narration -- the chance to speak for himself to a world that doesn't understand autism spectrum disorders. In this article on her website, Valerie Paradiz explains more about the show and publishes a description of the True Life episode from its producers. It's short and to the point, written for a mainstream audience who has heard something about autism but knows very little or nothing: Here it is:

True Life: I’m Autistic

About 1.5 million Americans are believed to have some type of autism, a developmental disability that impairs a person's social interaction and communication skills. Because of recent news stories about the rate of autism diagnosis rising to 1 in 150 births, this disorder has captured the media’s attention.

Yet to most us, autism is still mysterious, and we tend to keep people with autism at arm’s length. Few of us understand what autism really means, and even fewer know what it’s like to live with.

In this episode of True Life, we get up close and personal with three young people with autism. Each is affected by autism in a unique way (autism is considered a “spectrum disorder” that affects individuals differently and with varying severity). Yet they’re all capable of amazing things.

Jeremy, 17, has autism so severe, he can’t speak, make appropriate facial expressions or make gestures. Because he has so much difficulty communicating, he’s never had any friends his own age. Now he’s learning to use a portable machine that speaks the words he types, and he’s reaching out to peers at his high school. He’s even decided to host a party at his house for the first time in his life. Can Jeremy break through and make friends at his high school?

Jonathan, 19, is an autistic savant – someone who has both a severe disability and an extraordinary talent, like a math or music skill. In Jon’s case, he creates astonishing charcoal drawing and paintings without ever having taken lessons. Lately, though, Jonathan’s been having sudden, mysterious outbursts that are derailing his life and creative ability. Because of his autism, he can’t articulate what’s happening when he has these outbursts. His parents have tried every test and medication imaginable, but nothing has worked. Can Jonathan and his parents stop these outbursts so he can get back to his art?

Elijah, 16, has Asperger’s Syndrome, a high-functioning type of autism that can be nearly invisible to people who don’t know about autism spectrum disorders. Asperger’s affects his ability to process speech and non-verbal social cues, but to most people, Elijah would simply appear quirky. His goal is to become a comedian, but he also wants to hide his autism from people who wouldn’t be sensitive to it. Now he’s going to a comedy festival in Las Vegas, where he’s being pressured to make jokes about autism in his act. Will Elijah find the courage to reveal himself onstage?

Their autism sets them apart. But can they reach through their disability and connect with the world? Find out on “True Life: I’m Autistic.”

"Brainman" Daniel Tammet's Great Ride

Daniel Tammet has an amazing talent for numbers and mathematics -- he has recited, error-free, the number pi to more than 22,000 digits in a performance that lasted five hours. But when he was a child, he found social interactions overwhelming and suffered the bullying of other kids. It was after a series of epileptic seizures that his mathematical talents emerged, he says.

It wasn't until he was 25 years old that Tammet learned he has Asperger's syndrome, a high-functioning form of autism spectrum disorder. As The New York Times points out today in a profile of Tammet, he "has made a difficult and self-conscious journey out from his own mind." He has learned to carry on a conversation, and to try to look people in the eye without staring at them. You can read the feature on Tammet, "Brainman, At Rest In His Oasis," at The Times website here.

The "Brainman" of the story headline echoes the title of a one-hour documentary that features Tammet and his skills. You can see a video clip here, via the Google Video website. This clip shows Daniel meeting Kim Peek, the man on whom Dustin Hoffman's character in "Rainman" is based. This clip features more about Kim and his amazing reading comprehension and memory; but notice how Daniel calmly interacts with both Kim and his father in this 4-minute clip. Then read this nugget from The Times article, describing his one-on-one interview with a reporter:

Not so long ago, even a conversation like this one would have been prohibitively difficult for Mr. Tammet, now 28. As he describes in his newly published memoir, "Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant" (Free Press), he has willed himself to learn what to do. Offer a visitor a drink; look her in the eye; don't stand in someone else's space. These are all conscious decisions.

The book, which has received good reviews in Britain, is a brisk-seller on Amazon.com after Tammet was featured in a "60 Minutes" interview last month. (See a clip at CBS News here.)

Tammet has his own blog, Optimnem, which lately reads like any budding celebrity's catalog of media mentions and public appearances. This passage from an entry titled "Public Speaking" represents something all parents of kids with a disability can appreciate:

Since the launch of Born On A Blue Day this past summer I've been invited to speak in a wide range of places. I've ... spoken in front of both a few dozen people and several hundred, in schools and libraries and theatres.

I have quite a quiet voice so the first thing I always have to remind myself to do is speak up. I introduce myself and my book and talk about my life. Afterwards I'm asked all sorts of questions by members of the audience.

The most enjoyable part of this for me is speaking in schools for children with special learning needs, including autism. The parents and teachers who attend my talks are always very complimentary about what I have to say.

My main message in them is that difference needn't be disabling, that it's ok to be different and that everyone is unique in some way and should feel it possible to live out that uniqueness. When we do that, autistic or not, we give ourselves the chance of happiness.

Asperger's Association Responds To Tragedy at Boston Area High School

In the wake of a fatal stabbing at a Boston area high school, the Asperger's Association of New England issued a statement today that sought to reassure the public that "physical violence is not at all typical of people with Asperger Syndrome" while also providing support to teens with Asperger's and their families.

The statement came after a 16-year-old boy with Asperger's was charged in the stabbing death of a 15-year-old classmate at Lincoln-Sudbury Regional High School in suburban Boston. The teen, John Odgren, faces charges as an adult under Massachusetts law. He pleaded innocent in court on Friday in the stabbing death of James Alenson.

If you live in the Boston area, you know this tragedy was a big topic of discussion among families of every kind at suburban gatherings all during this past weekend. For parents of kids with Asperger's and other autism spectrum disorders, there was a doubled-over feeling of grief and concern. There was the unspeakable horror at the news -- a child's life lost in a senseless act of violence. And there was the additional concern about the public's response to the knowledge that the teen charged in the crime has this serious disability.

The Asperger's Association statement follows in that vein. It says, in part:

Our hearts go out to both families, and to the entire school community.

Physical violence is not at all typical of people with Asperger Syndrome (AS). AANE has worked with thousands of families, teachers, and other professionals for more than a decade. In that time, we have never before heard of a comparable event. We hope the public will remain open minded and open hearted, and not compound this tragedy by forming a sweeping negative stereotype about all people with AS.

The Association also offers its services "as a source of information and support to anyone affected by the recent tragedy" by providing information, support and referrals to parents, teachers and other professionals. The Association encourages parents of teens with Asperger's to contact its office to attend a support group meeting that was scheduled for tonight. And the group promises to issue more information about its activities and support resources.

The Boston area media coverage of this murder understandably has been intense the past few days. This story is a big deal, as this clip from the Associated Press picked up in California shows. (The story described the murder's aftermath and reports that youth charged in the crime was very interested in crime forensics.) This Boston Globe story reports that fellow students heard the youth talking of trying to kill someone, and that he was alienated from other kids.

Reports like this one in the MetroWest Daily News have cited Odgren's enrollment in a special education program hosted by Lincoln-Sudbury designed to help integrate teens with disabilities into the general high school program.

An Articulate Woman Who Happens to Have Asperger's

The Boston Globe this week published stories focusing on three Boston area college students with Asperger's syndrome. If you have two minutes to spare, click on this link to reach a page that takes you to an audio recording and slide show of Nomi Kaim, a 23-year-old woman who walks 4 miles to her class at Harvard Extension School as a way to calm her body and mind.

The audio clip is remarkable for Kaim's self-awareness. She is articulate in explaining her challenges with "executive functioning" makes it difficult to organize her thoughts to do chores at home or schoolwork. "I can spend a lot of time and energy on the logistics of life," she says, which leaves her less time and energy to look for friends.

The accompanying article on Kaim, by Irene Sege, does an admirable job of laying out other emotional and social challenges facing this young woman who received a diagnosis after leaving Bryn Mawr College because it was so intense for her. Through the support of her family, medication and her own determination, she appears to be doing well.

A second story visits with two other college students -- one doing better than the other both in classes and social situations -- to illustrate the point that like every case on the autism spectrum, every case of Asperger's is slightly different. (Note: if you keep clicking on Globe links, the website will ask you to register.)

The information presented here is reminiscent of a recent New York Times report about students with Asperger's going to college and the accommodations that their schools sought to make. You can read a recap of that report by clicking here.

Going to College with Asperger's

Valerie is a math whiz who aced the SATs, but she has trouble picking up social cues, such as when her Carnegie Mellon classmates pushed her to the sidelines during a group project. (She received her Asperger's diagnosis while taking a year off from college.) But with the right supports, including a life skills coach her family hired as well as a supportive college administrator, Valerie earned her degree. She now has a retail sector job in Pittsburgh and still hangs out with her "nerdy" friends from college.

While acknowledging the big challenges facing students with Asperger's, this is a clearly drawn success story, the centerpiece of a New York Times "Education Life" magazine issue published November 5. The issue is headlined "A Dream Not Denied," and kids with disabilities including autism spectrum disorders take center stage. You can read about Valerie and other college students in the feature story "Students on the Spectrum" by clicking here. The story is about more than one young woman's accomplishments; it points out that colleges like Marshall University, Keene State College in New Hampshire, MIT, Boston University and a number of community colleges are hustling to figure out the best way to serve a growing number of students with developmental disabilities like Asperger's. For example, the story points out that:

"A top expert estimates that one in every 150 children has some level of [autism] spectrum disorder, a proportion believed to be rising steeply. With earlier and better intervention, more of these children are considering college, and parents, who have advanced them through each grade with intensive therapies and unrelenting advocacy, are clamoring for the support services to make that possible."

This article also notes that the Individuals with Disabilities Education Act requires colleges to provide some supports, but that college educators and administrators are working to figure out how much and what exactly to do. One disability specialist in Minnesota says interventions to provide social skills training at college is the least they can offer. "We would provide an interpreter to a hard-of-hearing person. Why don't we provide an interpreter [of social situations] for somebody with Asperger's?"

Other stories in this special education section describe the architectural designs at St. Coletta of Greater Washington, a school that serves children and adults with autism spectrum disorders and mental retardation. See the slide show at The Times website by clicking here. Buildings on the campus are color-coded to help students know where to go; there's a lack of nooks and crannies for kids with autism to hide out, unproductively; a sensory room for children to relax when they get overstimulated; and residential programs that teach non-verbal kids to use signs to prepare meals and food shopping lists.

The third article of note in this issue is all about college students with the developmental disability of Down Syndrome; read it (here) to see how parents of these kids work, constantly work, to help their children reach their full potential. And how some colleges are opening their doors to them, providing supportive environments.