Tuesday, January 30, 2007

Additions to Autism Bulletin "sidebar"

A brief note to readers: I've made some recent additions to the Autism Bulletin sidebar -- that's the column on the right-hand side of this web page -- designed to help parents and new readers navigate this site and the avalanche of information out there on the web.

The additions include: Links to a list of books recommended for parents, and a list of autism resources (clinics, support groups and professionals) around the country, both from the Yale Child Study Center. And links to special reports, including the list of 2006 advocates of the year, and the recent news in review for January.

As always, suggestions and comments are welcome, both here and via e-mail at michaelsgoldberg AT yahoo DOT com.

Yale Center to Study Development of Infants Who Show Autistic Signs

The Yale Child Study Center received a $3.5 million grant from the National Institute of Child Health and Human Development to conduct a five-year study into the earliest manifestations of autism in infants, and how such children subsequently develop communication skills and other functions.

The leader of the five-year study is Dr. Fred R. Volkmar, a child psychiatrist, Yale Medical School professor and leading researcher on autism at Yale who has been a key figure in defining what an autism spectrum disorder diagnosis entails. A short bio at the Yale Child Study Center website explains that Volkmar "was the coordinator of the International Field Trial for autism and related disorders, which developed the definition of autism used in DSM-IV (Diagnostic and Statistical Manual of the American Psychiatric Association, Fourth Edition, 1994).

The researchers issued a press release last week (read it here) that describes the project as "an ongoing, multidisciplinary research program on autism and related developmental disorders" that "focuses on developmental aspects and outcomes for affected patients." The release also says:

Autism is a developmental disorder that has a profound effect on socialization, communication, learning and other behaviors. In most cases, onset is early in infancy. Information on the earliest development aspects of autism in children has been limited even though three to four of every thousand individuals are affected.

The interdisciplinary program brings together existing and new expertise, infrastructure and resources focused on diagnosis, early detection, causes and treatment of autism.

The Yale Daily News, the university's campus newspaper, today reports that this autism research grant could benefit early childhood and special education programs that the Child Study Center has been working on in the New Haven, Conn., area. Read the story here.

Sunday, January 28, 2007

Review of Recent Autism-Related News

A roundup of recent news covered in Autism Bulletin:

Research news

A consortium of 11 universities led by researchers at University of Michigan is tackling a DNA study with samples from 3,000 patients to better understand the nature of autism spectrum disorders. Read more here.

News from around the states, and Canada

A leading advocacy group for people with Asperger Syndrome, the Asperger's Association of New England, sought to reassure the public that the condition was not known to precipitate violent behavior; this came in the wake of a fatal stabbing at a Boston area high school on Jan. 19, in which the alleged perpetrator has an Asperger's diagnosis. You can read more here, and also here (the Asperger's Assocation) and here (column by Boston area parent Susan Senator).

Missouri Gov. Matt Blunt proposed spending $3.9 million to improve autism diagnostic and treatment services. Blunt made this proposal in his state of the state speech on Jan. 24. Read more here.

Texas lawmakers are poised to consider a bill that would make it possible for families to use school vouchers to send autistic children to private school. The idea runs headlong into a longstanding debate in Texas over school vouchers. Story here.

A New York assemblyman filed a bill that would make health insurers cover services for the diagnosis and treatment of autism spectrum disorders. More information here.

A New Jersey appeals court ruled Jan. 17 that a health plan for state workers improperly denied coverage for parents who sought services such as occupational therapy for their autistic children. Read coverage, including links to court decisions, here.

Arizona is piloting a program to address a wide gap in available services for kids with autism. More on that development here.

Pennsylvania lawmakers elected a new Speaker of the House who has a nephew with autism and pledges to put autism-related services at the forefront of his agenda. More on that development here.

A Washington State autism task force has submitted a set of forward-thinking recommendations designed to support people with autism throughout their lives. The governor and Legislature are supposed to consider what to do next. More on this issue here. The Washington report follows on the heels of another effort in Kentucky to define the scope of the problem and propose solutions for people with autism.

The Ontario government said it would provide autism-related services for 225 children on the province's waiting lists. The province said it also would train more teachers. But families pointed out the waiting lists continue to grow faster than investments in services and people to deliver them. Read more here.

Technology news

British autism researchers released a special DVD intended to help teach children with autism to recognize emotions. Read more here.

Note to readers

Dear readers: Do you find this "news in review" format useful? Please let me know by posting a comment here or sending me an e-mail (michaelsgoldberg AT yahoo DOT com). Thank you for reading Autism Bulletin.

Thursday, January 25, 2007

Missouri Governor Cites Autism in State of State Speech; Seeks Funding for Services

Missouri Gov. Matt Blunt, a Republican elected in 2004, made health care his biggest priority in his state of the state speech delivered yesterday. Near the end of a long discussion of "quality, affordable health care" he called for $3.9 million in funding to improve diagnostic and treatment services. Here's the passage from his speech:

We have a moral obligation to protect the innocent and vulnerable. Our children are among the most vulnerable. As I travel the state, I have visited with family after family that is dealing with autism. Autism Spectrum Disorders affect more lives than pediatric cancer, diabetes and AIDS combined. Early diagnosis of autism dramatically improves the development of children who have the disorder. Fortunately, these autistic disorders can be reliably diagnosed very early in a child’s life–sometimes as early as six months. To focus on diagnosis and improvements to autism treatment I am asking you to approve my recommendation of 3.9 million dollars.
You can read the whole speech here (the above quote is on page 4 of the PDF document). The St. Louis Post-Dispatch didn't mention the line in its news story published online today, but noted in general that the governor was trying to counter his "tightfisted image" by demonstrating he cares about people who can't afford health care. Click on this link to read the news story.

It's too soon for me to tell how this budget line item compares to previous years spending plans in Missouri. This report from the News-Leader in Springfield, Mo., says that the plan calls for spending $500,000 on an early childhood center for kids with autism in the Ozarks.

The Post-Dispatch story quotes Democratic voices in the state saying that the governor's entire plan for Missouri lacks details. So we'll have to see what happens to this idea.

It is interesting, however, that autism spectrum disorders made it into the governor's speech at all.

Wednesday, January 24, 2007

Autism Takes Stage in Texas School Voucher Debate

Leading newspapers in Texas are reporting that a leading state lawmaker is working on a bill to create a school choice program for children with autism who can't find appropriate special education programs to attend.

This idea puts a special education wrinkle on a school voucher issue that public school advocates and legislators have blocked in past years because they said it siphons away public dollars from school programs that need them to succeed. The Houston Chronicle newspaper notes: "School voucher programs repeatedly have died in the Texas Legislature, but the Senate Education Committee chairwoman is eying a whittled down school-choice option that might be harder for lawmakers to resist."

You can read the Chronicle story, "Autism Fuels Calls for School Vouchers," online here via TexasInsider.org, published December 18 when Sen. Florence Shapiro, a Republican from Plano (near Dallas), started talking about this plan that would enable families to use state money to pay for private autism education programs. Another story published by the Austin American Statesman today highlights the efforts of parents to drum up support for Shapiro's bill -- which she has not filed yet.

It is clear that demand for autism service is growing in Texas, almost doubling in the past five years to about 17,282 students in the 2005-06 academic year, according to state figures cited by the Chronicle.

This issue, complicated already by its recent history in Texas politics, is finding a mixed reception among advocates, including those for people with disabilities. The Disability Policy Consortium, a Texas umbrella group, says it opposes the voucher program for kids with autism to attend private schools, according to the American Statesman. One reason: state voucher funds might not cover the cost of private education programs, and therefore would exclude those who couldn't afford to pay. Another: private schools could decide which students to accept.

Tuesday, January 23, 2007

New York State Bill Would Make Health Insurers Pay for Autism Services

A state assemblyman from the Bronx has filed a bill that would make every health insurance policy "which provides coverage for hospital, surgical or medical care coverage" also cover services for the diagnosis and treatment of autism spectrum disorders.

The Business Review of Albany, N.Y., reports in this article that the proposal filed by Peter Rivera, a Bronx Democrat who chairs the Assembly's mental health committee, faces questions from an employers' group called the Employer Alliance for Affordable Health Care, which is seeking a state-wide review of health insurance costs and benefits. The business publication also notes that Eliot Spitzer, the new governor, has said he wants to make sure all children in the state receive health insurance.

You can read the text of the bill online here. Notably, the bill's language states that health insurers could not refuse to cover treatments they consider experimental.

The Review also quotes Wendy Harnisher of the Capital District Biomedical Support Group for Autism Spectrum Disorders, who said she knows people "who have had to choose between bankruptcy and losing their homes or getting the best available treatment for people with autism."

Monday, January 22, 2007

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.

Friday, January 19, 2007

Waiting Lists Grow For Families in Ontario Even as Province Raises Funding for Autism Services

The government of Ontario, Canada, said it would provide autism-related services for 225 children on the province's waiting lists in a $13 million (Canadian dollars) boost to autism programs. This waiting list issue has been a controversial one, spurring a class-action lawsuit by more than 1,000 families in 2004 (see story here via CBC News). The government's announcement (which you can read here) includes a long list of efforts that Ontario is undertaking to train more specialists in behavior-based therapies to help kids with autism.

To judge by media coverage so far, the controversy about waiting lists are still top-of-mind. In an interview Thursday night with the Canadian Broadcasting Corp. (CBC), Mary Anne Chambers, Ontario minister of children and youth services, was asked whether this announcement was "a drop in the bucket" when there's so much demand for services.

Chambers defended the government, saying that the province had doubled its spending on autism services in the past two years, and that a key decision in July erased a previous restriction on autism services that caused them to end when a child turned six years old. The lifting of that restriction has increased the demand for services, along with the rise in the number of people with an autism diagnosis. "There will still be kids on the waiting list, and it will continue to grow. This is not a temporary situation," she said, adding that the government was working its way down a long list of priorities to serve people with autism.

Estee Klar-Wolfond, founder of The Autism Acceptance Project based in the Toronto area, told the CBC that while she was glad to see Ontario think in terms of long-term support for people with autism, there needs to be a broader approach to providing therapies than the behavior-based approach called IBI, or Intensive Behavioral Intervention. (IBI is derived from the principals of Applied Behavior Analysis, or ABA.) She also advocated for the involvement of people with autism in future policy-making bodies.

This CBC News story online has a recap of this announcement. The Ottawa Sun newspaper notes here that the waiting list for autism services stood at 1,280 families as the government announced its increase in services.

Thursday, January 18, 2007

N.J. Court Rulings: State Workers Health Insurance Covers Autism Services

The New Jersey Superior Court of Appeals ruled Wednesday in two separate cases that the health insurance program administrator for state workers wrongly denied requests of families who sought autism services including speech and occupational therapy for their young child diagnosed with autism spectrum disorder.

These cases represent legal rulings in one state, and for one group of people (children of state employees), but illustrate a larger skirmish taking place around the country between health insurers who would rather see someone else bear the cost of autism-related services and families who are told such services are an essential path to progress.

You can read the 23-page decision in the case of Jacob Micheletti and Joseph Micheletti v. State Health Benefits Commission here (via Rutgers University law library). The gist of the case: the state workers' health insurance administrator violated state law by not providing equal coverage to a person with a "biologically based mental illness" (BBMI) such as autism. The administrator had denied the request for speech and O.T. due to a narrow, "literal" reading of a state law which stated that such services were not required since they were not "restorative" -- that is, they were not designed to bring back abilities the autistic child used to have. Instead, they were designed to foster new abilities.

The appeals court judge, Donald G. Collester, wrote that the state law's spirit "is to afford greater coverage to those afflicted with BBMIs. However, the State Health Benefits Commission's exclusion of treatment for autism eviscerates that purpose." He further wrote:
In this case the denial of coverage for Jake's prescribed treatment is couched in terms of the contractual exclusion of benefits for non-restorative speech, physical and occupational therapy, but the medical evaluations of Jake indicate that the therapy is the only treatment modality for an autistic child. Denial of the treatment amounts to exclusion from coverage of a class of dependents, notably afflicted children, based on the nature of their mental illness, which is beyond the limits of the statutory authority of the SHBC.

The exclusion as applied by SHBC is contrary to the goal of the State Health Benefits Program because it would lead to the anomalous and unacceptable conclusion that while medically necessary treatment for autistic children is mandated for dependents of those insured by "carriers," an unfortunate State employee who has an autistic child must bear the entire cost of necessary treatment in addition to the emotional burden of having a child afflicted by this incurable and mysterious illness. This result runs contrary to the core of the State Health Benefits Act.
In a separate but similar case in which a state employee appealed the denial of health insurance coverage for O.T. services to a child with autism -- after receiving coverage for 22 months worth of services -- Judge Edith K. Payne also ruled in favor of the family. Payne noted that the health insurance administrator decided to preclude coverage for O.T., speech and physical therapy for children with autism and Pervasive Developmental Disorder "after a rise in such claims had been recognized" by its medical director.

This case is called Walter Markiewicz v. State Health Benefits Commission, and you can see the 19-page ruling here.

New Jersey state officials today were figuring out whether they were going to appeal the rulings, according to a newspaper report online in The Courier Post, based in the southern part of the state.

Tuesday, January 16, 2007

Video From British Autism Researchers Teach Children To Recognize Emotions

Which face is happy? "The Transporters" provide lessons in recognizing emotions.

The British government, working with autism researchers at Cambridge University's Autism Research Centre, have produced a new video program called "The Transporters" designed to help young children with autism learn how to recognize emotions, and to practice generalizing what they learn. The government plans to make 30,000 DVDs of the video program available to children with autism in the U.K. via the National Autistic Society.

While it does not appear that this video is available outside of Britain, the materials associated with the project provide some good background information for parents in other countries about the use of video technology to teach about emotions. You can read the government announcement issued last week by clicking here, and you can see a video preview of the program at a special Transporters website, with explanations about the thinking and research behind the video. I would recommend this page from the website which covers information for "parents, teachers and carers" -- issues such as using facial features to convey emotions, and generalizing lessons learned in the video to other situations in daily life. The materials say:

Bringing the understanding of emotions from the series to the real world is a principal educational aim of the series. There are several things you can do to help with this. Look for similar emotional expressions on TV, in films and newspapers, as well as in real life when watching other people. Talk about what happened, who the characters were, how they felt and how they showed their feelings.

Choose pictures from magazines that convey different emotions. Try to work out what the people could be thinking or saying, looking at the similarities to emotions in the series. Associate the emotions presented in the series with the child's immediate environment. Discuss examples from their lives. Ask the child to mention such examples from his or her experience. Ask the child to create similar stories to those in the series with his or her own toys.

Since children with autism spectrum disorders often show little interest in other people's faces and emotions, the video program puts human faces onto very familiar transportation vehicles. The vehicles move in a predicable fashion, on the road, over a railroad track; the researchers say the children are responding to them. "What we're trying to do is to bring them back into the social world. By putting emotions onto the vehicles, they learn to understand the social world," says Simon Baron-Cohen, a prominent British autism researcher who is director of the Autism Research Centre.

In addition to the typical range of emotions -- happy, sad, angry, afraid, surprised -- the Transporters stories cover more complex feelings such as jealous and joking. Baron-Cohen says that the video stories are tailored not only to show these emotions, but also to create a context for what gives rise to the various feelings in stories that last four or five minutes. Each episode, designed to appeal to children between the ages of 2 and 8, covers one or more emotions. There's a quiz for children to take after each episode, asking viewers to identify the emotions on the faces like those above.

British actor Stephen Fry is the narrator, so the program sounds a bit like Jeeves the butler speaking to the kids. If anyone knows of a similar project in North America that is worth watching, please feel encouraged to leave a comment here or e-mail me.

Monday, January 15, 2007

Media Pick Up "Unstrange Minds" As Hook to Debunk Cries of "Autism Epidemic"

Both Time and the online magazine Slate have picked up the main thesis in Roy Richard Grinker's new book, "Unstrange Minds," which as Slate's writer puts it, "makes the case that the rise in autism diagnosis is nothing more than an epidemic of discovery."

It's important to note these articles, along with a U.S. News and World Report piece highlighted here last week, because as more media outlets focus on this book, Grinker's well-regarded work will become grist for arguments in the policy debates over funding for research, and questions about services in schools and other facilities, that eventually affect people with autism and their families. (You can find today's Slate piece, "The Autism Numbers, Why there's no epidemic" here. The Time article, "What Autism Epidemic?" is available here.) This is the kind of media attention that threatens to take the public's focus away from pursuing results -- What causes autism? What can we do about it? -- and instead shines a light on semantics and debates about definitions: What is an epidemic, anyway? Do we need to worry about something that is not "an epidemic"?

The Slate piece, by Arthur Allen, who has a new book about the history of vaccines coming out this month, says people such as quarterback Doug Flutie, Rep. Dan Burton and NBC Chairman Bob Wright (a founder of Autism Speaks) have cried "autism epidemic" as a way to get more research funds. The point the writer makes is that people respond to hyped up language; they rally for funds, pass laws, demand services, boycott immunizations, and so on. The problem, he says, is that Grinker's research shows that there is no evidence of an epidemic. Time's article, by Claudia Wallis, is more succinct in bullet-pointing Grinker's research on why there are more autism cases in the U.S.: broader medical definitions, increased special-education reporting requirements, less social stigma associated with the diagnosis, "financial incentives" to get Medicaid without financial need, and the "relabeling" of kids once called mentally retarded or learning disabled as autistic.

There's nothing wrong with these discussions, of course, unless you buy into the underlying assumption that the Slate and Time writers make: that without a popular belief that the rising incidence of autism cases represent an "epidemic" there would be less urgency about the issue. There would be fewer efforts to raise money, fund research, pass legislation, increase supports for people on the autism spectrum and efforts to help their families. There would be less advocacy for all these things. Maybe there would be no Combating Autism Act.

I look forward to reading "Unstrange Minds" to gain more understanding about the history of autism diagnoses and how different cultures treat their children. (You can find out more about the book, and read an excerpt, by visiting the author's site here.) I also want to understand better the context in which reports like these from Time and Slate pick up Grinker's work as newsworthy. Because I would expect more of these reports to be published.

Friday, January 12, 2007

A Very Small Step Forward for Autism Services in Arizona

In an opinion article published this week in the Tuscon Citizen, Robert Meza, a Democratic state representative from Phoenix, comes right out and says "The inability to find quality treatment for children with autism is the norm in Arizona-- not the exception."

Meza goes onto to recount his experience following along with the mother of a young daughter in the search for quality autism services. He writes:

She soon learned that the local autism organizations that offer ABA provide therapists with only a few hours of training, no curriculum and minimal supervision. These well-intended individuals are being sent into families' homes-- into situations for which they are unprepared. And all the while, the parents, having read all of the research, hold out for miracles.

Reading this op-ed article with the headline "New hope in cards for families living with autism" (you can find it online here) one might expect that there's big change afoot in Phoenix. But that's not exactly the case. The reason for hope is a "small pilot program" to provide applied Behavior Analysis (ABA) services at a facility run by the Center for Autism Related Disorders, which started at the University of California at Los Angeles and now runs facilities in several states.

Meza deserves credit for highlighting this program. Let's hope there's more where it came from.

Wednesday, January 10, 2007

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.

Monday, January 08, 2007

Eleven Universities Join To Study DNA Samples from Autism Patients in Search of Cause

The goal of the Simons Simplex Collection Autism Research Initiative is to gather and bank DNA samples from 3,000 autism patients over the next three years, according to a statement released today from the University of Michigan. (See a copy of the statement here.) The project, funded by the Simons Foundation Autism Research Initiative, is slated to cost $10 million per year for the first two years of the project. Catherine Lord, a psychology and psychiatry professor and director of the University of Michigan Autism and Communications Disorder Center, will lead the consortium research effort. She says: "Collecting this data will greatly speed up the process of finding the causes of autism."

Researchers from Yale, Harvard, Boston University, Columbia, Washington University, the University of Washington, The University of Illinois-Chicago, Emory University, McGill University in Montreal and UCLA are also participating in this research project. The initiative plans to create a collection of "simplex" samples, that is, samples from families with one child with autism, so it can "support research across a range of areas with an adequate sample to address different sub-types" of autism spectrum disorder. The University of Michigan statement says:

While there are core deficits that define Autism Spectrum Disorders (ASD) there is also a great deal of heterogeneity among children and adults with ASD in terms of behaviors, level of functioning and co-morbid conditions such as mental retardation or obsessive compulsive disorder.

Recent findings in the molecular genetics of autism and in family transmission patterns suggest that there are likely several, if not many, autisms. Researchers say it is important to identify subtypes of autism that are associated with risk factors or etiologies in order to develop appropriate treatments or prevention strategies.

This kind of far-reaching research effort meshes with the approach demanded by the Simons Foundation, whose current call for research proposals insists on scientists sharing information and describes this 11-university project as a key component of its vision "to bring the very best scientists in the world to focus on the molecular genetics, cell biology and cognitive neuroscience of autism and related disorders." A statement on the foundation website adds: "Recent progress in each of these areas of investigation indicate that the time is now right for major advances in our understanding of the risk factors, causes and potential treatments of autism."

Where does the money come from? It turns out that Jim and Marilyn Simons are billionaires whose daughter was diagnosed with autism at age 6. He is a well-known mathematician who became a successful hedge fund manager. An interesting 2005 article from The Wall Street Journal described the Simons' drive to get science going on the autism problem, though his approach in funding research is described more as a venture capitalist than a philanthropist, the paper says. (A copy of the article, "A hedge-fund titan stirs up research into autism," is available here, via the helpful online archive of The Pittsburgh Post-Gazette.)

A note of perspective from the Journal article about the importance of the Simons' philanthropy. The article says:
Autism researchers lack a "good solid clue," says Thomas Insel, head of the mental-health institute at the government's National Institutes of Health. The doctor adds: "We have no lesion. We don't know what systems in the brain are involved. So we are at the very early stages. It's like cancer or diabetes research 25 years ago."

Sunday, January 07, 2007

Anthropologist Casts Light on Austim Views Around the World

Roy Richard Grinker arrives at his research into autism from two vantage points: first as the father of 15-year-old Isabel, who has autism. Second, from his background as an anthropologist and professor at George Washington University. And what he tells U.S. News and World Report is that the society into which an autistic child is born influences greatly whether the child will be diagnosed and have access to important services.

Grinker explains to U.S. News some of the social scientific research he has done for his new book Unstrange Minds: Remapping the World of Autism (Basic Books). You can read the magazine interview from the January 15 issue, by clicking here.

Grinker says he found stories of desperate circumstances, such as families in South Korea who hide children and keep them hidden from neighbors, afraid that an autism diagnosis will affect the whole family's future, such as the marriage prospects of siblings, and the market value of their apartments. He also found families in India who educated themselves, became experts and found ways to help their kids make progress. (Other travels took him to Africa, Appalachia and the National Institutes of Mental Health, according to the book blurb quoted on Amazon.com.)

These research experiences inform Grinker's view that countries like the United States are doing a better job counting autism cases, and so the numbers of diagnoses are rising; it's as if our society's rising ability to confront developmental disabilities has brought on the labeling of more cases.

Grinker's own child is doing well based on his comments -- she played the cello recently in a recent high school concert, for example -- and his latest research appears to have given him some personal solace. He tells the magazine:
There are some people who would say that the use of the term autistic to refer to such a wide range of people impoverishes the term. But speaking as a father, the expansion of the term is wonderful, because my daughter is not treated as an alien who should be institutionalized. If you go to India or South Korea and see how many people with autism are hidden away, you see how far we've come.
Professor Grinker's web page at George Washington University he recently received a $120,000 grant from the National Alliance for Autism Research (now part of Autism Speaks) to conduct the first ever epidemiological study of autism in Korea.

Thursday, January 04, 2007

Pennsylvania House Elects Speaker With Autism Services Agenda

Rep. Dennis O'Brien, a Philadelphia Republican, is the new House Speaker in Pennsylvania. It's a national story because of the politics of the situation -- even though the Pennsylvania House of Representatives has a slim Democratic majority, the members on Wednesday elected a moderate Republican as speaker because they favored him over a previous Democratic leader. But an important byproduct of this political development is that it has the potential to puts autism services on the front-burner in state affairs, The Pittsburgh Post-Gazette reports in this article.

O'Brien has autism in his family, and served as co-chair of the state's autism task force. The newspaper reports:

At the top of his agenda is funding programs for children with disabilities such as autism, a neurological disorder that his 21-year-old nephew has.

"Children with disabilities are now going to have a place at the table and a place in the budget," Mr. O'Brien said.

When it comes to helping children with disabilities, Mr. O'Brien does more than talk. He volunteers, he leads and he speaks up when an agency or a care provider is falling short of their responsibilities, Mrs. Richman said. [Estelle Richman is state Secretary of Public Welfare Estelle Richman, whom the newspaper reported has known O'Brien for 15 years.]

He is a leading advocate for children with autism. He is a member of the Center for Autistic Children, chairman of the House Autism Caucus and honorary chairman of the state's Autism Task Force.

There were no other autism advocates quoted in the newspaper account, but the advocates from Pittsburgh-based AutismLink sounded an optimistic note in their e-mail blast about O'Brien's selection. It was titled: "Breaking News from Harrisburgh!"

Wednesday, January 03, 2007

Washington State Autism Task Force Tackles Life-Long Service Issues

When the Washington state lawmakers returns to Olympia next week, they and Gov. Christine Gregoire will have before them an innovative set of 27 recommendations for improving services to people with autism. The state commissioned this report when it created the Caring for Washington Individuals with Autism Task Force. It's not clear what the policy makers in Olympia plan to do with those recommendations. But like another recent effort in Kentucky, the Washington task force's advice helps parents around the country what one state considers good ideas for providing these services. (To go to web page that has a series of links to the 16 pages of draft recommendations, bibliography and other information, click here. To see a recent Autism Bulletin story on a similar effort to come up with legislative proposals in Kentucky, click here.)

The 15-member Washington task force includes researchers, state officials, Senate and House members, parents and service providers. The task force says that the state should help people with autism from the time they are diagnosed (with a goal of that happening by 18 months of age) and throughout their adult lives. The report states:
It is our goal to ensure that persons with Autism Spectrum Disorder (ASD), regardless of age, race/ethnicity, and geography are included in their communities and receive appropriate and timely individualized, multidisciplinary, evidence-based, legally required services throughout their life. Early screening and intervention are essential and significantly improve outcomes for children with ASD. ADS is, however, a lifelong condition, and ongoing, appropriate treatments and family supports are required to enable adults with ASD to live productive lives in their own communities.
OK, so how do you do that? That's what the recommendations cover. They say that Washington state should:
  • Create four regional autism centers "to provide community based diagnostic services," along with health care and "appropriate evidence-based therapies such as speech, occupational therapy, ABA (applied behavior analysis)" and training programs for people with autism for their lives.
  • Ensure comprehensive health services, including medical care, vision, dental care and behavioral health services for people with autism.
  • Start publicly-funded autism-related services within 15 days of diagnosis.
  • Increase the state's ability to identify and track people with ASD and the services they receive.
  • Screen all children before age three, with a goal of screening by 18 months of age. Screen adults for incidence of high-functioning autism and Aspergers.
  • For children from birth to age 5 suspected of having autism, provide at least 25 hours of publicly-funded services per week, 12 months a year, for children suspected of having an autism spectrum disorder from birth to age 5.
  • For children in kindergarten through grade 12, provide a minimum of 30 hours per week of appropriate, publicly funded services.
  • Provide appropriate educational services for people with autism through age 21.
  • Provide continued multidisciplinary supports, therapies, vocational assistance and other services to autistic adults. Do this through regional autism centers, human services agencies and community organizations.
  • Develop education programs for all graduating students with ASD to help them succeed in post-secondary education programs, vocational/technical school, supported employment, community living, recreation and leisure opportunities. The goal here is to make people with autism "contributing, tax-paying citizens in their community," and the report notes "almost all [people with autism] can be successfully employed with appropriate supports."
  • Include autistic adults in Washington's Working Age Adult Policy, which means day services provided to them are designed to put them "on a pathway to employment."
  • Develop a guidebook for parents, service providers and others to help them understand what autism is and what they should do. Put the book online, in public libraries statewide and in CD format.
  • Increase the availability of childcare providers for kids with autism. Provide respite services for families and personal care help for people with autism.
  • Provide social services and support to parents and siblings of people with autism as a way to preserve families and prevent out-of-home placements.
  • Increase the options for residential and long-term care when out-of-home placements are needed.
  • Train professionals and educators who work with people with autism so they can understand the complexity of the disorder.
  • Commission a study on how to finance these services across state and federal agencies.
  • Pass legislation to require insurance coverage of "evidence based, medically necessary interventions and services for individuals with ASD across the lifespan." The report states "employer-based private health insurance plans are generally inadequate in terms of financing ASD services" though it says there are some model exceptions to the rule.
  • Pay for more community-based parent and family support organizations to meet the emotional needs of families and provide information about dealing with an autistic family member.
  • Fully fund regular education and revise the state's complex formula for special education costs so that early childhood autism services don't burden local school districts.
  • Create incentives, such as a student loan forgiveness program, to attract more doctors, dentists and other health care professionals to work with Washington's autistic population.
  • Establish a tax incentive for employers who provide jobs for people with autism.

It's an impressive list -- one that other states and the federal government could study for ideas to copy -- and it will be interesting to see what happens in the coming year.