The top five stories posted in June 2007:
1. Texas Governor Signs Autism Insurance Bill
2. Special Federal Court to Hear Autism Case on June 11
3. A New Blog for Applied Behavior Analysis Junkies
4. South Carolina Legislature Overrides Veto to Pass Autism Insurance Law
5. Vaccine Court Starts Hearing Autism Case, and Other News Briefs
The most popular tags or "labels" for readers researching articles on Autism Bulletin this month:
1. autism services
2. ABA
3. Asperger's
4. health insurance
5. legislation
SOURCE: Google Analytics
Saturday, June 30, 2007
Thursday, June 28, 2007
Note to E-Mail Subscribers
A note to e-mail subscribers of Autism Bulletin:
The e-mail feed did not appear to work for stories posted on June 27. You can find them here:
Pennsylvania Governor Urges Passage of Autism Insurance Bill
A Tale from Scranton, Pa.: Classroom Teachers Need More Support If Inclusion Programs Are to Work
The e-mail feed did not appear to work for stories posted on June 27. You can find them here:
Pennsylvania Governor Urges Passage of Autism Insurance Bill
A Tale from Scranton, Pa.: Classroom Teachers Need More Support If Inclusion Programs Are to Work
Advocates for Disabled Kids Take Issue with Journal Story
An Autism Bulletin reader pointed out to me today that a group of advocacy organizations for disabled children took issue with a story in The Wall Street Journal on June 25, "Mainstreaming Trend Tests Classroom Goals."
The Journal piece highlights the challenges that public school teachers are facing in helping disabled kids in their classrooms due to a lack of training and support. The advocacy groups interpreted the article as a slap against the idea of inclusion programs, because, it said, it gave voice to teachers' complaints that educating disabled children was difficult and driving some of them from the profession.
In response, the advocacy groups statement cites a litany of research sources that support the idea that inclusion, when done well, not only benefits disabled kids with a higher quality education than they would receive in separate classrooms for special education; the practice also benefits the educators and school community.
Find the statement here, on the website of the American Association for People With Disabilities. The groups helpfully post a copy of the Journal article, presumably with permission, on their website here.
Other organizations represented by the statement are: the National Down Syndrome Society, the National Down Syndrome Congress, the National Center for Learning Disabilities, and international advocacy group TASH. A key passage about the value of inclusion programs reads:
One factor not mentioned in the statement, which I would have expected: what are the benefits which typically developing students may experience through exposure to and collaboration in class with disabled peers? I would expect researchers to have identified some.
I read the Journal article differently than these advocacy groups, which is not to say their interpretation lacks merit. I took away the message, backed by evidence the reporter cited, that teachers in Scranton, Pa., lacked the proper training and support to make their inclusion settings work for everyone. The article suggested that this was a sad truth facing teachers, disabled kids and their families around the nation. Read more about the story here.
If you have thoughts to add about this important issue, please do so here or e-mail me at michaelsgoldberg AT yahoo.com.
The Journal piece highlights the challenges that public school teachers are facing in helping disabled kids in their classrooms due to a lack of training and support. The advocacy groups interpreted the article as a slap against the idea of inclusion programs, because, it said, it gave voice to teachers' complaints that educating disabled children was difficult and driving some of them from the profession.
In response, the advocacy groups statement cites a litany of research sources that support the idea that inclusion, when done well, not only benefits disabled kids with a higher quality education than they would receive in separate classrooms for special education; the practice also benefits the educators and school community.
Find the statement here, on the website of the American Association for People With Disabilities. The groups helpfully post a copy of the Journal article, presumably with permission, on their website here.
Other organizations represented by the statement are: the National Down Syndrome Society, the National Down Syndrome Congress, the National Center for Learning Disabilities, and international advocacy group TASH. A key passage about the value of inclusion programs reads:
Students labeled as having severe and multiple disabilities may appear to have such challenging impairments, and their needs appear to be either so basic (e.g. simple communication skills; appropriate manipulation skills; learning to sit) or so complex (e.g. requiring nursing intervention, G-Tubes, etc) that teaching these students in highly academic, typical classrooms seems improbable, and at the least, impractical. YET – research and best practice shows that this type of student learns more with the almost constant stimulation and numerous and spontaneous opportunities to interact with peers. Special educators, no matter how highly motivated or skilled, cannot provide the necessary ongoing stimulation in self-contained classrooms.
One factor not mentioned in the statement, which I would have expected: what are the benefits which typically developing students may experience through exposure to and collaboration in class with disabled peers? I would expect researchers to have identified some.
I read the Journal article differently than these advocacy groups, which is not to say their interpretation lacks merit. I took away the message, backed by evidence the reporter cited, that teachers in Scranton, Pa., lacked the proper training and support to make their inclusion settings work for everyone. The article suggested that this was a sad truth facing teachers, disabled kids and their families around the nation. Read more about the story here.
If you have thoughts to add about this important issue, please do so here or e-mail me at michaelsgoldberg AT yahoo.com.
Wednesday, June 27, 2007
Pennsylvania Governor Urges Passage of Autism Insurance Bill
Pennsylvania Gov. Edward G. Rendell today released a statement urging the General Assembly to pass a bill that would require health insurers to provide coverage for "proven medical treatments" for people with autism spectrum disorders up to age 21, with a cap of $36,000 per year. The bill, called Senate Bill 550, has already passed the state Senate but has not proceeded to a House vote.
"Pennsylvania has made great strides in our effort to 'Cover All Kids' with health insurance, but there is a large group of children for whom coverage is lacking due to a mistaken belief by insurance companies that autism is not a treatable medical condition," Rendell said. "By requiring private insurers to cover the medical services they should already be covering, we can make taxpayer dollars go further and help thousands of young people."
Read full text of the governor's statement here. Read text of Senate Bill 550, as recently amended, here.
The language of the bill specifically calls on managed care providers to create a network of credentialed autism services providers; it also says that while the dollar cap holds at $36,000 per year, insurers may not limit the number of appointments per year a patient may attend.
What kinds of services can be covered? The exact details are to be worked out, according to the Senate-approved version of the bill. It states:
The legislation goes on to say that any newly approved treatment must be covered within 120 days of the publication of these new rules.
Autism advocates in Pennsylvania held a rally on June 25 in support of another autism insurance bill, House Bill 1150, which also calls for covering autism services, with a similar cap of $3,000 per month. The bill was referred to a legislative insurance committee on April 30, according to the Assembly's website. (Read text of the House bill online here.)
The state Speaker of the House, who has a nephew with autism, has made bolstering autism services a key issue on his agenda. Parents and families and advocates have been rallying for it. And now the governor has weighed in.
For recent coverage of Pennsylvania, see:
Pennsylvania House Elects Speaker With Autism Agenda
Pennsylvania Governor Calls for Autism Funding Hike
"Pennsylvania has made great strides in our effort to 'Cover All Kids' with health insurance, but there is a large group of children for whom coverage is lacking due to a mistaken belief by insurance companies that autism is not a treatable medical condition," Rendell said. "By requiring private insurers to cover the medical services they should already be covering, we can make taxpayer dollars go further and help thousands of young people."
Read full text of the governor's statement here. Read text of Senate Bill 550, as recently amended, here.
The language of the bill specifically calls on managed care providers to create a network of credentialed autism services providers; it also says that while the dollar cap holds at $36,000 per year, insurers may not limit the number of appointments per year a patient may attend.
What kinds of services can be covered? The exact details are to be worked out, according to the Senate-approved version of the bill. It states:
Treatment for autism spectrum disorders shall include the following care prescribed, provided or ordered for an individual diagnosed with an autism spectrum disorder by a licensed physician or psychologist if the care is determined to be medically necessary: psychiatric care, psychological care, rehabilitative care, therapeutic care, pharmacy care; [and] any care, treatment, intervention, service or item for individuals with an autism spectrum disorder which is determined by the department of public welfare, based upon its review of best practices or evidence-based research, to be medically necessary and which is published in the Pennsylvania Bulletin.
The legislation goes on to say that any newly approved treatment must be covered within 120 days of the publication of these new rules.
Autism advocates in Pennsylvania held a rally on June 25 in support of another autism insurance bill, House Bill 1150, which also calls for covering autism services, with a similar cap of $3,000 per month. The bill was referred to a legislative insurance committee on April 30, according to the Assembly's website. (Read text of the House bill online here.)
The state Speaker of the House, who has a nephew with autism, has made bolstering autism services a key issue on his agenda. Parents and families and advocates have been rallying for it. And now the governor has weighed in.
For recent coverage of Pennsylvania, see:
Pennsylvania House Elects Speaker With Autism Agenda
Pennsylvania Governor Calls for Autism Funding Hike
A Tale from Scranton, Pa.: Classroom Teachers Need More Support If Inclusion Programs Are to Work
"Inclusion doesn't work unless class sizes are greatly reduced."
"Children are suffering due to lack of support."
"We need more help!"
These quotes are from classroom teachers in the Scranton, Pa., public school system, where two-thirds of 750 teachers surveyed listed the inclusion of special education students in mainstream classrooms as their top concern. The quotes are included in a June 25 front-page article in The Wall Street Journal entitled "Mainstreaming Trend Tests Classroom Goals," which lays out why the trend of including disabled children in public school classrooms is creating problems and why experts believe it is a key factor behind teacher turnover and a shortage of qualified teachers across the nation.
If a student in your family with an autism spectrum disorder is in a mainstream classroom or may have this opportunity in the future, this article would be good to read. The article uses stories from Scranton to illustrate that:
* Teachers don't get enough training to know what to do with children who have a wide range of disabilities, including autism. Without the right kind and amount of training, they can't educate these children effectively to help the entire class progress.
* There aren't enough special education staff to support disabled students and the classroom teacher. Among staff who are in place, special education aides typically are high school graduates and receive little training.
* The results not only create problems for the classroom. They create tension between parents and educators, and potentially among families who share a classroom. The "regular education" students feel neglected, even as the special education students fail to make much progress. So while the policy of mainstreaming, the idea of including disabled kids in mainstream classrooms fulfills goals laid out in federal law to provide every child with a qualified teacher in the least restrictive setting possible, the effect is to burn out teachers who don't have the training and support to make it work.
The bottom line message: while inclusion is a worthy goal -- mainstreaming has the potential to teach kids with all kinds of abilities important lessons they can learn from each other -- it's hard to see how inclusion can work well without the necessary resources. Districts like Scranton -- and one can see how there are many Scrantons across the U.S. -- need to hire more people, train them properly and support them. The people on the front lines of our education system need to be put in positions where they can succeed.
The Journal is a subscription-only publication, but if you can find Monday's newspaper at the library, or have a friend or colleague at work who can share this story with you, it would be worth your time.
"Children are suffering due to lack of support."
"We need more help!"
These quotes are from classroom teachers in the Scranton, Pa., public school system, where two-thirds of 750 teachers surveyed listed the inclusion of special education students in mainstream classrooms as their top concern. The quotes are included in a June 25 front-page article in The Wall Street Journal entitled "Mainstreaming Trend Tests Classroom Goals," which lays out why the trend of including disabled children in public school classrooms is creating problems and why experts believe it is a key factor behind teacher turnover and a shortage of qualified teachers across the nation.
If a student in your family with an autism spectrum disorder is in a mainstream classroom or may have this opportunity in the future, this article would be good to read. The article uses stories from Scranton to illustrate that:
* Teachers don't get enough training to know what to do with children who have a wide range of disabilities, including autism. Without the right kind and amount of training, they can't educate these children effectively to help the entire class progress.
* There aren't enough special education staff to support disabled students and the classroom teacher. Among staff who are in place, special education aides typically are high school graduates and receive little training.
* The results not only create problems for the classroom. They create tension between parents and educators, and potentially among families who share a classroom. The "regular education" students feel neglected, even as the special education students fail to make much progress. So while the policy of mainstreaming, the idea of including disabled kids in mainstream classrooms fulfills goals laid out in federal law to provide every child with a qualified teacher in the least restrictive setting possible, the effect is to burn out teachers who don't have the training and support to make it work.
The bottom line message: while inclusion is a worthy goal -- mainstreaming has the potential to teach kids with all kinds of abilities important lessons they can learn from each other -- it's hard to see how inclusion can work well without the necessary resources. Districts like Scranton -- and one can see how there are many Scrantons across the U.S. -- need to hire more people, train them properly and support them. The people on the front lines of our education system need to be put in positions where they can succeed.
The Journal is a subscription-only publication, but if you can find Monday's newspaper at the library, or have a friend or colleague at work who can share this story with you, it would be worth your time.
Tuesday, June 26, 2007
Missouri Autism Panel Schedules Hearings
Missouri's new autism panel has scheduled five hearings this summer across the state to gather testimony and information for a report on "the state of autism in Missouri" its members are scheduled to deliver to the state Senate by October 31.
The 16-member committee, made up of lawmakers, parents, doctors and health officials "will look at services, teaching, training and research and then make recommendations for improving the quality of life for those with autism and their families," according to a statement released by the panel's chairman, State Sen. Scott T. Rupp. "We need to find solutions now that address the dramatically increasing concerns for families, service providers and policy makers," said Rupp, a Republican from Wentzville.
The tentative schedule of public hearings begins this week and carries on through the summer:
Citizens can also submit testimony by e-mail (to mdestefano@senate.mo.gov) or by mail to Senator Scott T. Rupp, Attn. Blue Ribbon Panel on Autism, State Capitol Building, Room 426, Jefferson City, MO 65101, FAX: 573-526-4766.
For more background on the Missouri autism panel, see this article.
The 16-member committee, made up of lawmakers, parents, doctors and health officials "will look at services, teaching, training and research and then make recommendations for improving the quality of life for those with autism and their families," according to a statement released by the panel's chairman, State Sen. Scott T. Rupp. "We need to find solutions now that address the dramatically increasing concerns for families, service providers and policy makers," said Rupp, a Republican from Wentzville.
The tentative schedule of public hearings begins this week and carries on through the summer:
- June 29, 10 a.m. to 4 p.m., in the Senate Lounge at the State Capitol in Jefferson City.
- July 20 in Cape Girardeau
- August 10 in Springfield
- August 31 in St. Louis
- September 21 in Kansas City.
Citizens can also submit testimony by e-mail (to mdestefano@senate.mo.gov) or by mail to Senator Scott T. Rupp, Attn. Blue Ribbon Panel on Autism, State Capitol Building, Room 426, Jefferson City, MO 65101, FAX: 573-526-4766.
For more background on the Missouri autism panel, see this article.
Saturday, June 23, 2007
Set of Five Autism-Related Bills Head to New Jersey Governor
New Jersey lawmakers finished passing a set of five autism-related bills on June 21. The measures include:
- A $500,000 program to establish a registry of autism spectrum disorders in the state.
- A program to provide instruction in autism and other developmental disorders awareness and methods of teaching to help students with these disabilities.
- Increased early intervention services for young children with autism.
- Extends funding for autism-related medical research and treatment at $4 million per year, paid through a $1 surcharge on motor vehicle and traffic violations.
- Establishing a New Jersey Adults with Autism Task Force.
The release earlier this year of a government study about the prevalence of autism cases -- an estimated 1 in 150 births, rather than 1 in 166 births previously estimated -- caught the attention of New Jersey policy-makers when they saw the Garden State had the highest incidence, about 1 in 94 births, of the 14 states surveyed in the Centers for Disease Control study. (For more on the CDC study, see this article.) Within weeks, New Jersey legislators were working on a set of bills, including the important but often-neglected issue of how to better serve adults with autism. (For background, see here.)
"New Jersey has taken a significant step forward in its efforts to solve the puzzle of autism," Assembly Speaker Joseph Roberts Jr., D-Camden, told the Associated Press. "For families whose loved ones are locked in the grasp of this disorder, today's actions send a signal that New Jersey will put its vast resources to use on their behalf." You can read the Associated Press article here via Philly.com, the website of the Philadelphia Inquirer and Philadelphia Daily News.
More information on the bills is available at the New Jersey Legislature's website. You can use the bill numbers below at the legislature's home page to search for more details. Links to the bills as they were introduced are below:
1. Statewide autism registry, passed by the Assembly 80-0, Senate 37-0.
Assembly Bill 2306 (A2306), also known as Senate Bill 2723 (S2723), find the original version as filed here.
2. More instruction in awareness and teaching methods for students with autism and other developmental disorders, passed Assembly 80-0, Senate 37-0.
Bill A4055, S2558. Find the original version as filed here.
3. Early intervention program to address needs of children with autism, passed Assembly 80-0, Senate 37-0.
Bill A4056, S2568. Find the original version as filed here.
4. State task force for adults with autism, passed Assembly 79-0, Senate 36-0.
Bill A4057, S2559. Find the original version as filed here.
5. Extended funding for autism medical research and treatment. Passed Assembly 75-4, Senate 36-0.
A 4059, S2569. Find the bill as originally filed here.
Tuesday, June 19, 2007
A New Blog for Applied Behavior Analysis Junkies
Angela Mouzakitis, a board certified behavior analyst (BCBA) who teaches in the graduate special education program at City University of New York's Queens College, has only been blogging for a few months, but she has things to say that could enlighten parents and families of children with autism spectrum disorders who want to understand more about topics applied behavior analysis (ABA).
ABA is the method of behavioral management -- of using positive reinforcement to encourage and shape positive behaviors while discouraging and eliminating negative behaviors -- that is widely used in teaching people with autism everything from bathroom etiquette to talking, reading and writing. But for a range of reasons -- it's challenging to do well, it's labor intensive, it's demanding on everyone involved, if not done well it can make conditions worse -- ABA has a PR problem. (Notice how the presenter in this article, What Makes An Effective Home-Based ABA Provider, advises behavior analysts to avoid generating negative perceptions of ABA service providers.)
Enter into this context Angela Mouzakitis' blog, called Applied Behavior Analysis: Current Topics. Not all entries appear written for laypeople, but most of the ones I have scanned are interesting. Take a recent essay on "the table, the chair and Applied Behavior Analysis," in which she explains why it's wrong for ABA therapists to insist on doing discrete trials at a table with very young children who are upset. She writes:
What's interesting about Angela's post is her ability to explain both the discipline and creativity involved in delivering quality ABA services. Another recent post on "Parent Anecdotal Records" does a similar good job explaining the need for parents to collect accurate information about what happens at home, and suggestions for how to do it well.
ABA is the method of behavioral management -- of using positive reinforcement to encourage and shape positive behaviors while discouraging and eliminating negative behaviors -- that is widely used in teaching people with autism everything from bathroom etiquette to talking, reading and writing. But for a range of reasons -- it's challenging to do well, it's labor intensive, it's demanding on everyone involved, if not done well it can make conditions worse -- ABA has a PR problem. (Notice how the presenter in this article, What Makes An Effective Home-Based ABA Provider, advises behavior analysts to avoid generating negative perceptions of ABA service providers.)
Enter into this context Angela Mouzakitis' blog, called Applied Behavior Analysis: Current Topics. Not all entries appear written for laypeople, but most of the ones I have scanned are interesting. Take a recent essay on "the table, the chair and Applied Behavior Analysis," in which she explains why it's wrong for ABA therapists to insist on doing discrete trials at a table with very young children who are upset. She writes:
The focus of the first couple of weeks of session should be getting to know the child, performing assessments in the natural environment through observation of the child's interaction with family, people, and the environment. Language samples should be monitored. As the child becomes more comfortable and begins to get excited to see his therapists, more structured programs can be implemented. However, the majority of ANY session, with ANY age child, should not be at the table. This is a tool used in therapy, but not the only one, and certainly should not be the focus of an ABA program.
This is a challenge for many therapists and families. Many of us are married to the table, and find it challenging to pull away from the table and engage the entire environment that a child lives in. While challenging, it is necessary, and requires talented and creative therapists to be able to use all aspects of a child's environment.
Therapists will not leave the table on their own and may require training and coaxing to leave it. The table is easy. Sitting a child in a chair, once instructional control is established and running cards and programs, is easier than identifying learning opportunities in the natural environment. Training is necessary. Often natural environment instruction is perceived as playing in the natural environment and questioning a child on labels, colors and shapes in everyday objects. Natural environment teaching requires planning, programming, and data collection and monitoring.
The bottom line is that the child's instructional environment should from the beginning be positive and enjoyable. If the child is screaming when he sees a therapist, crying at the table, something has gone terribly wrong and must be changed. ABA therapy for children with autism does NOT equate discrete trial teaching in a chair at a table. The principles need to be applied to teach a child functional language and skills that will promote independence in his life. This should be done in any and all environments that a child will experience. Divorce the table.
What's interesting about Angela's post is her ability to explain both the discipline and creativity involved in delivering quality ABA services. Another recent post on "Parent Anecdotal Records" does a similar good job explaining the need for parents to collect accurate information about what happens at home, and suggestions for how to do it well.
Monday, June 18, 2007
The Autism Puzzle Shows Its Complexity in Autism Speaks Controversy
That members of the same family disagree on how best to deal with a child's autism is not news. (Concerns about divorce among parents of autistic kids recently led the National Autism Association to announce a new program to provide marriage counseling to keep parents together.)
What is news is that members of the Wright family -- founders of Autism Speaks, arguably the nation's most successful charity at raising public awareness, advocating for Congressional support and collecting dollars for autism research -- are disagreeing, vehemently, in public, about the way to deal with every child's autism. The New York Times' front-page story today, "Autism Debate Strains a Family and Its Charity" illustrates how people united in their desire to help people with autism can come into conflict.
The quarrel between Bob and Suzanne Wright and their daughter Katie Wright, stems from comments Katie made to David Kirby, author of "Evidence of Harm," which argues that mercury in vaccines given to young children is a cause of rising autism rates. (You can access a portion of the interview here via AutismMedia.org.) Katie's son Christian has autism and his diagnosis in early 2004 led her parents to form Autism Speaks. The organization has absorbed other advocacy and fund-raising organizations including the National Alliance for Autism Research and recently Cure Autism Now.
In her interview with Kirby, Katie Wright praised both her parents as wonderful, strong advocates. And she insisted she was not commenting as a representative for Autism Speaks; but at the same time, she argued that it was time for groups like Autism Speaks to put genetics-related research on the back burner in favor of looking into the possible environmental causes for autism spectrum disorders. "I think that people who have been doing this a long time, pioneers who were doing this in the early 1980s when nobody was paying attention, these people are more conservative researchers and parents, are so resistant to change, I think they are frightened that they could have been going down the wrong path," she said, adding, "It's clear to me that we have been going down the wrong path in research. ... It's time to step aside" and let the parents of younger children take the lead, she said.
Her remarks sparked dueling statements, first from Autism Speaks disavowing Katie's remarks as not representing the group. Then Katie Wright posted a statement expressing disappointment in Autism Speaks, and reasserting that "it is my greatest hope that Autism Speaks as well as the scientific and medical community will fulfill their promises and commit themselves to the environmental, biomedical and therapeutic research so urgently needed." (The quote comes from a longer statement posted on the home page of the National Autism Association.)
The Wright's family drama illustrates a number of themes, not the least of which is the desperate urgency that parents like Katie feel to help their children. That's undeniable and widely shared. But it's also clear that the biggest challenge facing the autism community -- including people with autism, their families, clinicians, educators, researchers, service providers, advocates, policy makers, advocates -- is that its members frequently and loudly present themselves as belonging to several different communities.
There are people who believe in behavioral approaches. Those who see dietary restrictions and supplements as essential. Those who believe environmental causes, like mercury preservatives in vaccines, are autism's cause and therefore must be the primary focus for research and experimental treatments. Those who see the benefits of prescription medication. Those who see a combination of some of these as the way to go. Others who emphasize acceptance as the most important approach. And that doesn't cover everyone.
So it's not difficult to find, say, a group of families who have autistic children and find all of these beliefs and varied approaches represented in the gathering. They may be united in their desire to help their children, but they are not united in how to go about it.
Surely the complex and varied nature of autism spectrum disorders, and how they affect the lives of the people touched by them, makes this dynamic impossible to avoid -- at least until we have more answers. More clarity about what autism is, and what different autistic subtypes are. More information about its causes. More answers about effective treatments that resonate with more people. More supports in more communities for more individuals and their families. And more understanding.
What is news is that members of the Wright family -- founders of Autism Speaks, arguably the nation's most successful charity at raising public awareness, advocating for Congressional support and collecting dollars for autism research -- are disagreeing, vehemently, in public, about the way to deal with every child's autism. The New York Times' front-page story today, "Autism Debate Strains a Family and Its Charity" illustrates how people united in their desire to help people with autism can come into conflict.
The quarrel between Bob and Suzanne Wright and their daughter Katie Wright, stems from comments Katie made to David Kirby, author of "Evidence of Harm," which argues that mercury in vaccines given to young children is a cause of rising autism rates. (You can access a portion of the interview here via AutismMedia.org.) Katie's son Christian has autism and his diagnosis in early 2004 led her parents to form Autism Speaks. The organization has absorbed other advocacy and fund-raising organizations including the National Alliance for Autism Research and recently Cure Autism Now.
In her interview with Kirby, Katie Wright praised both her parents as wonderful, strong advocates. And she insisted she was not commenting as a representative for Autism Speaks; but at the same time, she argued that it was time for groups like Autism Speaks to put genetics-related research on the back burner in favor of looking into the possible environmental causes for autism spectrum disorders. "I think that people who have been doing this a long time, pioneers who were doing this in the early 1980s when nobody was paying attention, these people are more conservative researchers and parents, are so resistant to change, I think they are frightened that they could have been going down the wrong path," she said, adding, "It's clear to me that we have been going down the wrong path in research. ... It's time to step aside" and let the parents of younger children take the lead, she said.
Her remarks sparked dueling statements, first from Autism Speaks disavowing Katie's remarks as not representing the group. Then Katie Wright posted a statement expressing disappointment in Autism Speaks, and reasserting that "it is my greatest hope that Autism Speaks as well as the scientific and medical community will fulfill their promises and commit themselves to the environmental, biomedical and therapeutic research so urgently needed." (The quote comes from a longer statement posted on the home page of the National Autism Association.)
The Wright's family drama illustrates a number of themes, not the least of which is the desperate urgency that parents like Katie feel to help their children. That's undeniable and widely shared. But it's also clear that the biggest challenge facing the autism community -- including people with autism, their families, clinicians, educators, researchers, service providers, advocates, policy makers, advocates -- is that its members frequently and loudly present themselves as belonging to several different communities.
There are people who believe in behavioral approaches. Those who see dietary restrictions and supplements as essential. Those who believe environmental causes, like mercury preservatives in vaccines, are autism's cause and therefore must be the primary focus for research and experimental treatments. Those who see the benefits of prescription medication. Those who see a combination of some of these as the way to go. Others who emphasize acceptance as the most important approach. And that doesn't cover everyone.
So it's not difficult to find, say, a group of families who have autistic children and find all of these beliefs and varied approaches represented in the gathering. They may be united in their desire to help their children, but they are not united in how to go about it.
Surely the complex and varied nature of autism spectrum disorders, and how they affect the lives of the people touched by them, makes this dynamic impossible to avoid -- at least until we have more answers. More clarity about what autism is, and what different autistic subtypes are. More information about its causes. More answers about effective treatments that resonate with more people. More supports in more communities for more individuals and their families. And more understanding.
Sunday, June 17, 2007
Texas Governor Signs Autism Insurance Bill
Without fanfare, Texas Gov. Rick Perry signed a bill to amend the state insurance code to require some health plans to cover autism-related services for children older than 2 and younger than 6 years old. The Houston Chronicle cited Perry's signing the bill (House Bill, or H.B. 1919) in a story posted June 16 which summarized a number of the governor's legislative actions. (See story here.) The governor's website confirms Perry signed the bill, which includes other issues related to health insurance for individuals with brain injuries. Perry's office has not yet posted a statement about why he signed the bill, in spite of a powerful business lobby's opposition. (Read more background here.)
You can read text of the bill, H.B. 1919, via the Texas Legislature website, by clicking here. The new law takes effect September 1, 2007 and spells out what kinds of autism-related services must be covered, including evaluation and assessment services; applied behavior analysis; behavior training and behavior management; speech therapy; occupational therapy; physical therapy; and medications and nutritional supplements "used to address symptoms of autism spectrum disorder."
With the passage of new insurance laws in Texas and South Carolina, I've updated a map of what state legislation around the United States says about autism-related services. See the map below on this blog, here or here.
You can read text of the bill, H.B. 1919, via the Texas Legislature website, by clicking here. The new law takes effect September 1, 2007 and spells out what kinds of autism-related services must be covered, including evaluation and assessment services; applied behavior analysis; behavior training and behavior management; speech therapy; occupational therapy; physical therapy; and medications and nutritional supplements "used to address symptoms of autism spectrum disorder."
With the passage of new insurance laws in Texas and South Carolina, I've updated a map of what state legislation around the United States says about autism-related services. See the map below on this blog, here or here.
Wednesday, June 13, 2007
Advocates Establish Autism United to Offer Community Services; First Efforts Based on Long Island
Autism United, a new coalition of advocacy groups and service organizations based on Long Island, N.Y., announced its plans to provide community-based services, information and fund-raising for research in a press release June 12. Read the press release here, and see the group's new website AutismUnited.org.
The first two projects are to create a resource center (named in honor of a state legislator, Harvey Weisenberg), and to perform "a comprehensive study to provide an accurate count of the number of people with autism living on Long Island." Plans also call for projects in other states with money collected through fund-raising walks. The first event is scheduled for September 30 at Belmont Lake State Park in Babylon, N.Y.
Participating organizations include Long Island chapters of the Autism Society of America and the National Autism Association, as well as A-Champ (Advocates for Children's Health Affected by Mercury Poisoning) and Lifespire, a non-profit organization that helps people with developmental disabilities to live in their communities.
The first two projects are to create a resource center (named in honor of a state legislator, Harvey Weisenberg), and to perform "a comprehensive study to provide an accurate count of the number of people with autism living on Long Island." Plans also call for projects in other states with money collected through fund-raising walks. The first event is scheduled for September 30 at Belmont Lake State Park in Babylon, N.Y.
Participating organizations include Long Island chapters of the Autism Society of America and the National Autism Association, as well as A-Champ (Advocates for Children's Health Affected by Mercury Poisoning) and Lifespire, a non-profit organization that helps people with developmental disabilities to live in their communities.
Texas Autism School Voucher Bill Appears Stalled
While researching bills in the Texas Legislature, I looked up Senate Bill 1000, a proposal to allow parents to use public school vouchers to send their autistic children to be educated in schools of their choice, including private schools, using state money. The bill appears to be stalled in the Senate, with no action reported in the House. (Find it here, via the legislature's website.)
This bill got some attention earlier this year among education policy watchers. (See "Autism Takes Stage in School Voucher Debate," here.) While proponents saw the idea as a way to help children with autism spectrum disorders, critics (including educators who have opposed school voucher plans in general) opposed the measure as an attempt to open the door to broader attempts to use public funds for private schools.
This bill got some attention earlier this year among education policy watchers. (See "Autism Takes Stage in School Voucher Debate," here.) While proponents saw the idea as a way to help children with autism spectrum disorders, critics (including educators who have opposed school voucher plans in general) opposed the measure as an attempt to open the door to broader attempts to use public funds for private schools.
Texas Governor Has Until June 17 To Decide Fate of Autism Insurance Bill
Texas Gov. Rick Perry's staff today told NBC 5 TV News in Dallas that he had not yet made up his mind about signing or vetoing House Bill 1919, which would require health insurance plans in Texas to cover autism services for young children. The station carried a news report visiting with several parents of autistic children, who explained that signing the bill would enable them to provide more services for their kids without having to pay for it all out-of-pocket (or not getting the service at all). See a video of the report by clicking here. Perry must decide what to do by June 17, the TV station said.
You can read past coverage on the Texas proposal here. Click here to read the text of the bill via the Texas Legislature's website.
While the TV report highlights parents who support the bill, the proposal has opponents, too. The Houston Chronicle reported June 5 that The Texas Association of Business has come out against the bill because it would increase health care costs for employers. "We want to leave the discretion up to the employers and let them decide what health plans (to provide) and not the state," a business group spokesman told the newspaper. Read that article here.
You can read past coverage on the Texas proposal here. Click here to read the text of the bill via the Texas Legislature's website.
While the TV report highlights parents who support the bill, the proposal has opponents, too. The Houston Chronicle reported June 5 that The Texas Association of Business has come out against the bill because it would increase health care costs for employers. "We want to leave the discretion up to the employers and let them decide what health plans (to provide) and not the state," a business group spokesman told the newspaper. Read that article here.
Monday, June 11, 2007
Vaccine Court Starts Hearing Autism Case, and Other News Briefs
The United States Court of Federal Claims opened its first test case into the allegation that childhood vaccines such as measles-mumps-rubella shots, or the mercury-containing preservative thimerosal, led to children developing autism. This report from the Associated Press, carried on The New York Times website, explains that the court will hear nine test cases that represent almost 5,000 other vaccine damages claims across the country.
The report foreshadows what is to come in court over the coming months: families whose children have suffered greatly will present evidence that there could be a causal link between the vaccines and their children's condition. Lawyers for the government will argue that the causation theories lack scientific research or factual evidence to support them.
For more background on the vaccine court case, and information about accessing available court records and proceedings, see this article. For The Washington Post's take on the case, see this article. And for a critique of The Post's article and some links to past research studies on the vaccine-autism issue, see this article at STATS.org, the statistical fact-checkers at George Mason University.
More on the 'Epidemic' Debate
Just in time for the court case, The Times also today published an Op-Ed that seeks to debunk the idea that there's an autism epidemic. But while the authors outline a clear thesis, their argument is not new and it's not clear what the piece adds to any public policy debate.
In "A Spectrum of Disputes," by Paul T. Shattuck, an assistant professor at Washington University's School of Social Work, and Maureen Durkin, an epidemiologist at the University of Wisconsin, report that they have analyzed mountains of data, including school records in all 50 states. They have determined that because of relatively recent rules changes (schools started counting autism cases in 1991), and because school and medical records don't necessarily match, it's possible that the nation has become better at counting autism spectrum disorder cases -- and therefore one cannot say there's an epidemic.
Read the article online, for a limited time, by going to the Times site here.
After a long discourse on their research methods and findings, the author's conclude:
If we don't have to deliver a verdict on whether there's an epidemic, why bother with this essay, why now? Because the public's attention is focused on the vaccine court case? (The op-ed writers say they fear that the court case will drag out a debate about whether we face an epidemic.)
Do parents and advocates need the label of an epidemic to win support for better treatment options? Does the country need to see that "e-word" to sense the urgency? The article doesn't suggest a thought about this, at least not explicitly.
For more on this subject, see:
Media Picks Up "Unstrange Minds" as Hook to Debunk Cries of "Autism Epidemic"
Good Showing for Autism Documentary
"Autism: The Musical" a documentary that showcases the lives of five autistic children and their families in Los Angeles, took home an audience award at last weekend's Newport Film Festival. That's according to the director, Tricia Regan.
Regan also said in an e-mail message that HBO had agreed to televise the documentary in April 2008.
Read more about the film here.
The report foreshadows what is to come in court over the coming months: families whose children have suffered greatly will present evidence that there could be a causal link between the vaccines and their children's condition. Lawyers for the government will argue that the causation theories lack scientific research or factual evidence to support them.
For more background on the vaccine court case, and information about accessing available court records and proceedings, see this article. For The Washington Post's take on the case, see this article. And for a critique of The Post's article and some links to past research studies on the vaccine-autism issue, see this article at STATS.org, the statistical fact-checkers at George Mason University.
More on the 'Epidemic' Debate
Just in time for the court case, The Times also today published an Op-Ed that seeks to debunk the idea that there's an autism epidemic. But while the authors outline a clear thesis, their argument is not new and it's not clear what the piece adds to any public policy debate.
In "A Spectrum of Disputes," by Paul T. Shattuck, an assistant professor at Washington University's School of Social Work, and Maureen Durkin, an epidemiologist at the University of Wisconsin, report that they have analyzed mountains of data, including school records in all 50 states. They have determined that because of relatively recent rules changes (schools started counting autism cases in 1991), and because school and medical records don't necessarily match, it's possible that the nation has become better at counting autism spectrum disorder cases -- and therefore one cannot say there's an epidemic.
Read the article online, for a limited time, by going to the Times site here.
After a long discourse on their research methods and findings, the author's conclude:
We want to be very clear: our results do not mean we have nothing to worry about. Scientific and clinical advances have improved our ability to identify autistic children and to differentiate their unique needs from those of children with other types of developmental disabilities. But schools and other social service systems are unable to keep pace with these changes or give the children the help they need.
Research to discover what causes autism, including possible environmental triggers, must be a top priority. However, autism is not purely a medical puzzle — as we invest in new ways of understanding autism, we have a corresponding responsibility to invest in the capacity of our schools, medical centers and social workers to provide up-to-date treatment for those with the condition and support services for their families. In the end, we should not have to deliver a verdict on whether there is an epidemic to fulfill these obligations.
If we don't have to deliver a verdict on whether there's an epidemic, why bother with this essay, why now? Because the public's attention is focused on the vaccine court case? (The op-ed writers say they fear that the court case will drag out a debate about whether we face an epidemic.)
Do parents and advocates need the label of an epidemic to win support for better treatment options? Does the country need to see that "e-word" to sense the urgency? The article doesn't suggest a thought about this, at least not explicitly.
For more on this subject, see:
Media Picks Up "Unstrange Minds" as Hook to Debunk Cries of "Autism Epidemic"
Good Showing for Autism Documentary
"Autism: The Musical" a documentary that showcases the lives of five autistic children and their families in Los Angeles, took home an audience award at last weekend's Newport Film Festival. That's according to the director, Tricia Regan.
Regan also said in an e-mail message that HBO had agreed to televise the documentary in April 2008.
Read more about the film here.
Thursday, June 07, 2007
South Carolina Legislature Overrides Veto to Pass Autism Insurance Law
By unanimous votes in both the House and Senate today, South Carolina lawmakers overrode Governor Mark Sanford's veto to pass legislation that requires health insurers to cover services for children with autism up to age 16. The bill takes effect July 1, 2008.
You can read the text of the new law here, via the Legislature's website, and more background about the new law here. The text is known as S. 20 and also as Ryan's Law, in honor of the son of one of the legislation's strongest advocates, Lorri Unumb. Lorri sent a dispatch to a list of supporters, describing the scene in the State Capitol today, when families and other supporters of the autism bill lobbied for an override vote today, less than 12 hours after the governor's late-night veto. She recounts watching the lawmakers in the House chamber, deciding to hold a roll call vote. She writes:
You can read the text of the new law here, via the Legislature's website, and more background about the new law here. The text is known as S. 20 and also as Ryan's Law, in honor of the son of one of the legislation's strongest advocates, Lorri Unumb. Lorri sent a dispatch to a list of supporters, describing the scene in the State Capitol today, when families and other supporters of the autism bill lobbied for an override vote today, less than 12 hours after the governor's late-night veto. She recounts watching the lawmakers in the House chamber, deciding to hold a roll call vote. She writes:
A roll call can be a little dangerous – the governor can see which of his friends cast affirmative votes against his veto – so I got nervous again. As each legislator cast his or her vote, his or her name on the display board changed colors. “Green” meant a vote in favor of the override, and I can’t tell you what color signified a vote to uphold the veto, because there were none! 114 members voted, and, one by one, 114 names turned green on the big board.
And then the tears began to flow. But it wasn’t just Marcella [another mother and advocate] and me crying this time. ... My husband beside me started tearing up. Derrick and Sandrine Howle in the front row were crying. Everywhere I looked around in the balcony, a parent, a grandparent, an aunt, a cousin, a friend of a child with autism was weeping. Just then, all members of the House rose to their feet, turned toward us in the balcony, and erupted into applause. They gave us an emotional standing ovation for the tireless efforts of this grassroots gang, and they clearly felt proud of helping us override what some called a “cruel” veto.
Tears, hugs, and celebrations continued in the lobby of the State House, with senators and legislators coming out to greet and congratulate us. So many expressed the sentiment that they were honored to be part of this effort, which to them represented the political system at its purest – citizens petitioning their government for help and succeeding (though not without great difficulty and heartache).
What's interesting about this victory by autism advocates is the perseverance involved. One can imagine that, over the course of two years spent lobbying lawmakers, there were other things that they might have had to accomplish. While they were explaining to countless people why autism services are important, there could have been doctors' appointments for their children. When they were spending time building awareness about the benefits of such services, and arguing why people across the state should help pay for them, they might have had to work on their kids' individualized education programs. Or home behavior management strategies. Or, perhaps, making a living.
And when the governor vetoed the bill, late at night, Lorri Unumb and her fellow advocates could have folded. But they didn't. They were at the State Capitol less than 12 hours later, urging support one more time. And they won.
So, why did Gov. Sanford veto this bill? Well, as he explains in this veto message (a PDF file), he thought it cost too much, an estimated $10 million in its first year, that would add a projected $48 to the average citizen's health insurance premiums. He also objected to the idea of a government mandate for health care when, in his opinion, the free market is best at keeping costs down and deciding what should be covered. Lastly, Sanford said that the state was spending more on special education services and that these should benefit autistic children and their families.
The governor is a Republican, but so are a majority of members in both the House and Senate. And they, members of both parties, today voted unanimously to override Sanford's veto.
Wednesday, June 06, 2007
Advocates to Visit South Carolina Capitol after Governor Vetoes Autism Insurance Bill
South Carolina Governor Mark Sanford has vetoed legislation that would amend the state's insurance rules to provide for autism services coverage. This news comes tonight from Lorri Unumb, a leading advocate for the bill called "Ryan's law" and named for her son who has autism. The bill had large margins of support in both the state House and Senate, so advocates may lobby for a veto override.
More information when it becomes available.
For background, see:
South Carolina Lawmakers Poised to Pass Autism Insurance Bill
More information when it becomes available.
For background, see:
South Carolina Lawmakers Poised to Pass Autism Insurance Bill
Special Federal Court to Hear Autism Case on June 11
The online archive of documents in the "Autism Docket" at the United States Court of Federal Claims shows a list going back five years, though the claims that vaccines cause autism are older than that. This special court in Washington, D.C., set up by a 1986 act of Congress, exists to hear claims that vaccines cause injuries. On Monday, June 11 at 9 a.m., in a 450-seat courtroom, lawyers will begin presenting evidence to support their argument that the measles-mumps-rubella (MMR) vaccine, when administered with other vaccines containing the mercury-containing preservative thimerosal, cause children to develop autism. (Find information about following the court proceedings at the end of this article.)
As this piece in the June 5 edition of the legal news site Law.com explains, the so-called Omnibus Autism Proceeding is a historic legal case, a test of the 1986 law designed to reward damages to people injured by vaccines while holding drug companies who make the vaccines harmless (the government collects money for a vaccine damages fund). One reason this case is such a big deal is the scale: approximately 4,800 autism cases pending at the vaccine court, far more than any other type of injury.
A scan of some recent documents in the Autism Docket shows how difficult it can be to collect thousands of people's cases into one legal process, as the judges, or special masters as they are called, have been trying to do in this case. On Monday, the lawyers in the court will be arguing just one child's test case (that of Theresa Cedillo, in a case called Cedillo v. Secretary of Health and Human Services), and just one theory of vaccine injury (the theory that MMR vaccine+thimerosal in vaccines=autism). Other theories include MMR vaccine by itself causes autism and that thimerosal-laced vaccines cause autism, and the court expects to hear those later, according to this update published May 25 (it's a 9-page PDF file).
And as many readers will know, there have been a number of studies by government and academic researchers which have failed to find a vaccine-autism link. At the same time, strong voices like those of David Kirby, the author of Evidence of Harm, and advocacy groups such as SafeMinds.org, have emerged to cast doubts on those research efforts and the motives of the researchers and organizations involved. (See this press release, "University of Missouri Study on Link Between Autism and Mercury a Discredit to Sound Science," for a recent example. The university's own press release about its research, "Study Finds No Link Between Autism and Thimerosal," is here.)
The dueling press releases are but a symbol of the media battle that's been playing out for some time, and which we should expect to pick up in the coming days as the court session begins.
It's begun already. This piece in The Boston Sunday Globe warns Americans that the autism vaccine case, if it goes the wrong way, threatens the whole vaccine industry; the author argues that negative judgments and big plaintiff awards discourage drug makers from investing in new vaccines -- even though they don't have to pay the vaccine damages themselves. And Arthur Allen, the author of a recent book celebrating the history of vaccines, warns in this piece in Slate.com that because the special vaccine court's legal standards lack the rigor of the scientific community, it's not hard to imagine the autism plaintiffs winning big. (He also takes some proponents of the autism-vaccine link to the verbal woodshed.)
You can listen to the court proceedings for yourself, or read court session transcripts, starting June 11. Go to the court's website and register for access to a live, via-telephone, audio feed. Or access transcripts promised to be posted in a timely manner. Find information on audio feeds, and to register, click here. For other information, see this court website.
Also see:
Scientists Raise Voices Against Autism Parents' Vaccinophobia
As this piece in the June 5 edition of the legal news site Law.com explains, the so-called Omnibus Autism Proceeding is a historic legal case, a test of the 1986 law designed to reward damages to people injured by vaccines while holding drug companies who make the vaccines harmless (the government collects money for a vaccine damages fund). One reason this case is such a big deal is the scale: approximately 4,800 autism cases pending at the vaccine court, far more than any other type of injury.
A scan of some recent documents in the Autism Docket shows how difficult it can be to collect thousands of people's cases into one legal process, as the judges, or special masters as they are called, have been trying to do in this case. On Monday, the lawyers in the court will be arguing just one child's test case (that of Theresa Cedillo, in a case called Cedillo v. Secretary of Health and Human Services), and just one theory of vaccine injury (the theory that MMR vaccine+thimerosal in vaccines=autism). Other theories include MMR vaccine by itself causes autism and that thimerosal-laced vaccines cause autism, and the court expects to hear those later, according to this update published May 25 (it's a 9-page PDF file).
And as many readers will know, there have been a number of studies by government and academic researchers which have failed to find a vaccine-autism link. At the same time, strong voices like those of David Kirby, the author of Evidence of Harm, and advocacy groups such as SafeMinds.org, have emerged to cast doubts on those research efforts and the motives of the researchers and organizations involved. (See this press release, "University of Missouri Study on Link Between Autism and Mercury a Discredit to Sound Science," for a recent example. The university's own press release about its research, "Study Finds No Link Between Autism and Thimerosal," is here.)
The dueling press releases are but a symbol of the media battle that's been playing out for some time, and which we should expect to pick up in the coming days as the court session begins.
It's begun already. This piece in The Boston Sunday Globe warns Americans that the autism vaccine case, if it goes the wrong way, threatens the whole vaccine industry; the author argues that negative judgments and big plaintiff awards discourage drug makers from investing in new vaccines -- even though they don't have to pay the vaccine damages themselves. And Arthur Allen, the author of a recent book celebrating the history of vaccines, warns in this piece in Slate.com that because the special vaccine court's legal standards lack the rigor of the scientific community, it's not hard to imagine the autism plaintiffs winning big. (He also takes some proponents of the autism-vaccine link to the verbal woodshed.)
You can listen to the court proceedings for yourself, or read court session transcripts, starting June 11. Go to the court's website and register for access to a live, via-telephone, audio feed. Or access transcripts promised to be posted in a timely manner. Find information on audio feeds, and to register, click here. For other information, see this court website.
Also see:
Scientists Raise Voices Against Autism Parents' Vaccinophobia
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