Friday, August 31, 2007
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:
2. Autism services
3. Health insurance
SOURCE: Google Analytics
Monday, August 27, 2007
Lorri Unumb, a parent and law professor who is one of the South Carolina autism services advocates, said it makes sense for citizen advocates to gather periodically to share ideas and best practices—just like industry groups do.
"The goal is to share resources, ideas, and strategies with each other," Unumb said in an e-mail message. "I am quite certain that the insurance industry is sharing strategies on how to defeat insurance legislation throughout the states. We need to learn from each other's lessons and inspire the parents and professionals in states that are just beginning the journey."
The meeting, slated for Sept. 22 in Charleston, S.C., is geared toward parents, who Unumb said are effective advocates for change at the state level. The one-day event is the second of its kind and will follow a similar agenda to a previous meeting held in February. Participants expect to share information geared to the workings of government decision-makers, such as a cost-benefit analysis of early intervention services for young children with an autism diagnosis; a review of employers and insurers who voluntarily provide coverage for Applied Behavior Analysis (ABA) and other services; and current insurance statues and Medicaid programs in the 50 states.
Unumb said she also expects to discuss how advocates can address issues and questions that come up at the state level, such as whether ABA is considered an experimental treatment (it's not) and other issues of autism awareness and grassroots political organizing.
Advocates from at least nine states, including Washington, Oregon, Arizona, Kansas, Oklahoma, New York, Minnesota, Indiana and South Carolina are expected to attend the meeting, Unumb said.
I'm not aware of a public announcement of this meeting on the web, but you can read some notes about Unumb's work in South Carolina at the blog she set up earlier this year, called South Carolina Autism Insurance Bill.
South Carolina Legislature Overrides Veto to Pass Autism Insurance Law
Sunday, August 26, 2007
Causes are hotly debated. Some scientists are focusing on a genetic mutation as a possible cause. Others say that childhood vaccines or environmental toxins may be involved.
Regardless of cause, evidence that a growing number of children are being diagnosed as autistic is everywhere. Agencies on Long Island that provide social, educational and training services for children and adults with autism can't keep up with the growing demand. Residential facilities in Nassau and Suffolk report waiting lists ranging from two to five years.
But the lack of standard reporting requirements for schools or pediatricians means that agencies and schools don't know what they face, even in the immediate future. There is a glaring lack of hard data—actual figures—on the incidence of autism among children and adults in specific regions and communities on Long Island.
Without such information, it's hard to plan for services or to provide funds for them—even though it's apparent that the problem is growing to such an extent that some advocates call autism a major health care crisis with no end in sight.
The Newsday editors are diplomatic; "hard to plan" is an understatement, as parents of children on waiting lists for services now can attest. A lack of options for education, social support services, employment training, housing—just about every aspect of life—makes long-term planning like a steep climb in dry sand for most families.
The editorial, a welcome sign that awareness of the autism challenge is spreading, calls on Congress to appropriate funding for the Combating Autism Act signed into law in December 2006, and also urges the Centers for Disease Control to make more precise autism diagnosis figures available to Long Island. The newspaper suggests the creation of a council that can coordinate services among state, county and local service agencies that aren't doing enough of that now. The piece concludes:
But above all, along with the awareness of autism's manifestations, there needs to be valid information about its prevalence in every region, Long Island among them. Without such basic data, the extent of the problem will remain as puzzling as its causes. That's no way to deal with a disorder that can wreck the lives of so many.
Newsday's editorial follows up on articles by reporter Delthia Ricks. In one of her pieces, Ricks talked to genetics researchers at Cold Springs Harbor Laboratory about what they believe is promising research into the causes of autism spectrum disorders. Read "Researchers: New Understanding of Autism Near," by clicking here.
Wednesday, August 22, 2007
Mike Wasmer, co-founder of the Kansas Coalition for Autism and member of the task force, has posted a useful summary of the proceedings on the organization's home page. His report outlines some of the challenges that any state facing a rising population of children with autism spectrum disorders would have to grapple with, among them:
* The lack of federal funds that Medicare has available to provide Kansas in the short run for home- and community-based autism services. Basically, the state expects to get enough money to provide such services for 25 children. "Because of the limited number of spaces, there will obviously be a long waiting list," Mike Wasmer's report notes.
* The range of issues a state task force needs to tackle. A passage from the report states:
The Task Force needs to provide a preliminary report of legislative recommendations to the Legislative Educational Planning Committee (LEPC) by November 2007, and a final report by November 2008. The LEPC will review these recommendations and determine if legislation is introduced.
The Task Force is forming several subcommittees to consider:
Subcommittees will be holding meetings prior to the next meeting of the Task Force as a whole on September 20, 2007. Clearly, there are additional issues that need to be tackled by the Task Force than are being addressed by the above subcommittees. However, we need to narrow our focus in order to get concrete recommendations to the LEPC by the November 2007 deadline. Additional topics will be addressed prior to submission of the final report in November 2008.
- Best practice recommendations for educating individuals with autism.
- Strategies to increase the number and availability of qualified service providers to children with autism in all areas of Kansas.
- Health insurance coverage for services related to autism.
- Accessing education resources and funding.
- Public dissemination of information and the need for an autism registry.
The Kansas task force's next meeting will be 9:30 a.m., Sept. 20, in Room 313-S at the Kansas Statehouse.
Kansas Appoints Autism Task Force with Goal of Improving Access to Services
Saturday, August 18, 2007
A restaurant outing also be unusually welcoming, as Amy Leonard Goehner, a writer at Time Magazine and mother of 13-year-old Nate, who describes a special program organized at T.G.I.Friday's restaurants in New Jersey recently. You can find Geohner's August 15 article, "Dining Out with an Autistic Child," by clicking here.
Geohner praises Alexandra Abend, a 16-year-old who has a younger brother with autism, for working with the restaurant chain to organize Autism Family Nights at 35 T.G.I.Fridays; the staff at the restaurants got some awareness training about autism and how to treat families when they came in (don't worry if someone gets upset; bring the check quickly). Goehner urges other restaurants to see the opportunity for increased revenue by showing a bit of understanding.
"Launching a program like this takes time and dedication, and unfortunately, for those of us with autistic children, time and dedication are already monopolized," Goehner writes. "But here's hoping that T.G.I.Friday's—or someone—sees an opportunity, where most just see a screaming child."
Friday, August 17, 2007
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."
Thursday, August 16, 2007
The Google News feed is one of many sources of ideas for stories here, so I thought I would show it to you. Please let me know if you like this feature, if you find it useful and interesting (or not). You can leave a comment at the end of this post or e-mail me at michaelsgoldberg AT yahoo.com.
And if you are a new reader of this blog or get these posts via e-mail, you can see other links in the column at right: important articles from this blog, important court decisions, government documents, books and other useful websites for parents of children with autism spectrum disorders.
As Sharon Begley of Newsweek recounts in the August 20 issue, researchers found that the second method showed that autistic children performed, on average, much better. Read the article, "The Puzzle of Hidden Ability," here.
The article picks up on a study published in the August 2007 journal Psychological Science, "The Level and Nature of Autistic Intelligence," by autism researchers in Montreal and the University of Wisconsin-Madison. See abstract for the study here. One of the researchers, Michelle Dawson of the Riviere-des-Prairies Hospital in Montreal, tells Newsweek that the traditional IQ test known as Wechsler that calls for talking to a stranger is unfair, comparing it to "giving a blind person an intelligence test that requires him to process visual information."
The different test, called Raven's Progressive Matrices test, yielded different results. Begley writes:
For the study, children took two IQ tests. In the more widely used Wechsler, they tried to arrange and complete pictures, do simple arithmetic, demonstrate vocabulary comprehension and answer questions such as what to do if you find a wallet on the street—almost all in response to a stranger's questions. In the Raven's Progressive Matrices test, they got brief instructions, then went off on their own to analyze three-by-three arrays of geometric designs, with one missing, and choose (from six or eight possibilities) the design that belonged in the empty place. The disparity in scores was striking. One autistic child's Wechsler result meant he was mentally retarded (an IQ below 70); his Raven's put him in the 94th percentile. Overall, the autistics (all had full-blown autism, not Asperger's) scored around the 30th percentile on the Wechsler, which corresponds to "low average" IQ. But they averaged in the 56th percentile on the Raven's. Not a single autistic child scored in the "high intelligence" range on the Wechsler; on the Raven's, one third did. Healthy [typically developing] children showed no such disparity.The article points out that the results of these tests often have an influence on what kind of expectations parents and educators place on a child and can have lifelong implications. And while the Wechsler test is widely used, the Raven's test could be a truer measure of intelligence, one that enables evaluators and parents alike to discover an intellectual abilities they weren't aware of previously.
Sidenote comment: Begley is an award-winning reporter, whose work I have read for a long time in the Wall Street Journal before she joined Newsweek. She's consistently terrific. But in this story, she allows a quote from an unnamed person who basically disparages parents of disabled kids everywhere -- and parents of autistic kids in particular -- as willing to trade a severe diagnosis for better special education services. Here's the passage:
If many autistics are more intelligent than an IQ test shows, why haven't their parents noticed? Partly because many parents welcome a low score, which brings their child more special services from schools and public agencies, says one scientist who has an autistic son (and who fears that being named would antagonize the close-knit autism community).I've read this canard before, but never with solid evidence to back it up. I'm disappointed that such a distinguished writer would stick this unfounded comment in there from a person who won't stand up and say who he is, and on what he bases this opinion. A scientist no less. Readers deserve better.
Wednesday, August 15, 2007
Jayne is scheduled to publish a book,
"Act Early Against Autism," in March 2008, which recounts what she has learned as the parent of a child who was diagnosed with an autism spectrum disorder; according to her website, the book will include chapters on therapies her son found beneficial and insights into the financial demands that an autism diagnosis can place on a family.
Tuesday, August 14, 2007
South Carolina was the location for a major victory for advocates of autism services and insurance coverage earlier this year.
Assuming the pieces air as scheduled, they will be available for listening on the web. If you don't want to navigate NPR's website to find the clips, you can look back here for links to the segments.
UPDATE: Find the story focusing on Massachusetts schools' struggling to deal with a rising population of autistic children, aired Aug. 15, at NPR by clicking here. Reporter Larry Abramson spends time with public school teachers going through an ABA training session at the private May Institute, a school for children with autism. He also talks to educators, parents and kids.
While the story doesn't use the term applied behavior analysis explicitly, it describes ABA in concept. Glen Dunlap, the lecturer leading a teacher training session explains "teachers need to take a scientific approach to the problem" of getting autistic kids to learn. Teachers "must team up with their colleagues and take copious notes on the child's behavior. When does he act out? What seems to cause the most disturbing behavior? After months of work, the child's teachers succeeded in reining in his behavior."
"It takes a lot of work, but many public schools are managing to work with autistic children in mainstream classrooms, because they have to," Abramson reports.
UPDATE NO. 2: Find the link to South Carolina advocate Lisa Rollins' interview with NPR's John Ydstie by clicking here. In a key excerpt, Rollins describes the arguments she and other advocates made in favor of covering autism services like ABA for young children:
Rollins says the parents who backed the bill argued that autism is similar to a stroke or to Alzheimer's disease, neurological conditions that are covered by insurance.
"We also pointed out to legislators that it was the economically smart thing to do, because these early interventions can make the difference between a child going to a residential care-type of institution, nursing home facility, for the rest of their lives or being able to be a typical kid and be therefore a contributing member of society."
Bonus link: On its web page, NPR linked to Autism Bulletin's map of state insurance laws.
South Carolina Legislature Overrides Veto to Pass Autism Insurance Law
Sunday, August 12, 2007
"It shows the NIH's commitment to intensify our efforts to find causes and new treatments for autism," said Alice Kau, program manager for autism at the National Institute of Child Health and Human Development, a section of the NIH.
The grants announced Aug. 2 went to six universities around the country; in total, the researchers will receive about $13.3 million per year for the next five years, Kau said in an interview with Autism Bulletin. The NIH soon will begin evaluating another group of grant funding applications and plans to announce another round of research awards in 2008, which will increase the agency's spending on autism research to approximately $24 million annually, she said.
The research awards this year, and in 2008, represent an effort to establish "autism centers of excellence" or "ACEs" and to consolidate two existing research programs, called STAART, or Studies to Advance Autism Research and Treatment, and CPEA, or Collaborative Programs of Excellence in Autism. (See the press release from Aug. 2 here.)
The STAART program established eight research centers around the country: Boston University, Kennedy Krieger Institute, Mt. Sinai Medical School, University of California at Los Angeles, University of North Carolina at Chapel Hill, University of Rochester, University of Washington and Yale University. This website about the STAART program has more background about the research going on at some of these facilities, including outpatient studies that examine relationship building interventions, drug trials and the relationship between behavior and diet in young children.
This website has more information about the CPEA research efforts, including the status of specific research projects (whether peer-reviewed papers have been published yet, for example). These research efforts are exploring a range of issues, including genetic traits of autism and whether there's a causal link between the Measles-Mumps-Rubella vaccine and autism spectrum disorders. The website indicates it was last updated in September 2006.
Of course, the research takes time before it yields results that affect the lives of people with autism and families of those people. Kau said we'll have to wait a while before we see the results of these and other research studies about autism. "It's still very exciting," she said of the latest funding round.
* National Institutes of Health Reorganizes Autism Research Program, from Autism Bulletin
* Autism Activities at NIH, federal government website last updated October 2006.
* National Institutes of Health, press release from October 25, 2001, "New Children's Environmental Health Centers to Study Causes of Autism and Other Disorders," link here.
Thursday, August 02, 2007
The announcement means that the government research agency will consolidate two existing programs into a single research effort called the Autism Centers of Excellence (ACE). The NIH announced a set of grants under this program (see more information below), and said there would be another round of grants awarded in 2008. The announcement does not say how much money the government is awarding through these research grants; I have sent a question to the NIH and will let you know what I learn.
You can read the NIH press release here.
The NIH said the Autism Centers of Excellence will include both research centers designed to "foster collaborations between teams of specialists, who share the same facility so that they can address a particular research problem in depth." And example given: "specialists in brain imaging might collaborate with behavior researchers to determine if a particular behavior is associated with a difference in brain structure. They might also consult with a team of genetics experts to find a hereditary basis for their observations."
The research networks involve researchers at many locations around the nation, all working on a single question. This is valuable, the NIH said, because these many researchers can recruit volunteers around the country to participate in a study.
Data gathered by these research funding recipients will go to the National Database for Autism Research, a web-based application housed at the NIH for autism researchers around the world to share information.
National Institutes of Health Director Dr. Elias Zerhouini said the consolidation of two existing programs -- the Studies to Advance Autism Research and Treatment, and Collaborative Programs of Excellence in Autism -- is "needed to capitalize on the gains made by the NIH research effort in autism."
That makes sense, but Autism Bulletin readers may also recall that during last year's long debate before Congress passed the $945 million Combating Autism Act to boost autism research funding and services, there was a lot of discussion about reforming the way the NIH goes about researching autism and other medical conditions. (Joe Barton of Texas, a key Republican committee chairman at the time, sought to block the bill used his desire to reform NIH as an argument. See past coverage here and here.)
The Grant Recipients
The NIH published a list of six Autism Centers of Exellence grant award recipients. They reflect an interesting variety of research efforts going on around the country. The recipients are below, with information provided by the National Institutes of Health:
— Edwin H. Cook (University of Illinois at Chicago): Researchers at the University of Illinois at Chicago ACE Center will focus on understanding the repetitive behavior seen in ASD. Known as "insistence on sameness," this behavior is a hallmark of ASD. Examples of insistence on sameness consist of wanting to wear the same clothes every day, taking the same route to work or school, or becoming fixated on certain subject matter, such as buildings or cars. Center researchers will focus on genetic factors as well as brain chemicals and brain functions that could account for repetitive behaviors in people with ASD, and test whether genetic differences influence how individuals respond to certain medications intended to reduce the occurrence of these behaviors.
— Eric Courchesne (University of California, San Diego): Researchers at the UCSD ACE Center also will use brain imaging to track brain development in children believed to be at risk for autism spectrum disorders. Unlike other ACE program projects, which will attempt to identify forerunners of ASD in the siblings of children with ASD, the UCSD researchers will study infants who have been referred by their physicians. The physicians will make the referrals on the basis of a checklist of behaviors that are similar to those of older children with ASD. The primary goal of this center is to identify brain or other physical differences that might predispose a child to autism. The UCSD Center will collect some of the first information ever obtained on how the brains of very young children with autism process and respond to information.
— Geraldine Dawson (University of Washington). Researchers at the University of Washington ACE Center will seek to identify genes and other potential factors that may predispose an individual toward ASD, as well as factors that might protect against them. In addition to genes, the researchers will try to determine the risk of ASD by examining communication difficulties, early behaviors, patterns in the sounds babies make, and brain structure and activity patterns. Researchers will also try to determine whether certain types of interactions between the parent and baby can decrease the chances for ASD.
— Nancy J. Minshew (University of Pittsburgh): Researchers at the University of Pittsburgh ACE Center will study how people with ASD learn and understand information. Research shows that the ability to organize information into categories is critical to language development. The Pittsburgh researchers will use brain imaging techniques to study how infants at risk for autism and toddlers diagnosed with the disorder place information into categories. Researchers will also use brain imaging techniques to study which parts of the brain are activated in people with and without ASD when processing information and emotions.
— Joseph Piven (University of North Carolina at Chapel Hill): In hopes of identifying brain differences in children who develop ASD, researchers at this Network of sites operating under the direction of the University of North Carolina will use brain imaging techniques to compile images of the brains of very young infants. Some of these children may go on to develop ASD. Their brain images will be compared to those of other infants, to identify differences between children who develop autism and those who do not. While previous studies have documented the enlarged brains often seen in ASD patients, little is known about the abnormal processes during early brain development in children with ASD. The research could offer new insights that lead to earlier diagnosis of ASD.
— Marian D. Sigman (University of California, Los Angeles): Researchers at the UCLA ACE Center will seek to understand how ASD affects the ability to communicate. The researchers will try to find clues to language-related communications problems by looking at genes, behavior and brain structure and functioning. The researchers also are interested in disorders that affect the mirror neurons. Mirror neurons are brain cells that become active either when a person performs an action or watches the action performed by someone else. When many patients with ASD are asked to imitate behaviors, images of their brains show that their mirror neurons are less active than those of other people. The researchers will try to stimulate the mirror neurons of people with ASD by having them follow a set of instructions to complete a task.
Wednesday, August 01, 2007
You can read a July 30 press release about the bill here. “The number of children diagnosed with autism is escalating at an alarming rate,” Yarmuth said in his statement. “Yet, our methods of working with these children have failed to adequately address the challenges confronting them. This legislation will lead to solutions that ensure all children get a quality education and realize their vast potential.”
The text of the bill does not identify any particular method of educating children with autism spectrum disorders, apparently leaving that to the task force to identify them. The Education Secretary would be responsible for appointing the task force, and the bill's initial language would assign it to do identify and spread the word about about these educational strategies and best practices. The task force would also report to Congress about:
- (1) Learning models, interventions, and services that demonstrate improvements in reading, writing, and math proficiency for individuals with autism.
- (2) The cost-effectiveness of these learning models, interventions, and services, and their applicability for local education agencies.
- (3) Professional development needs of educators who serve individuals with autism.
- (4) Methods for incorporating State-, local- and community-based programs and services into the classroom to provide comprehensive support for individuals with autism.
- (5) Identification of barriers to successful implementation of programs and services related to the education of and provision of services to children with autism and recommendations to address those barriers.
- (6) Dissemination of findings to Congress, all relevant agencies, and States and United States territories to improve the quality of learning for individuals with autism.