A confession: Years ago, when my family first began to learn about autism, I didn't think much about "Autism Awareness Month." It seemed like an innocent gesture, but also a naive wish for good will and public recognition for a condition that wasn't well understood. And, it seemed to me back then, it was one effort (among many) to grab a spotlight for a public tired of such things.
I have changed my view. This month, in the midst of some demanding times at work (which have left me fewer chances to post to Autism Bulletin), I didn't have much time to think about autism awareness. And yet the issue found me, as I took a walk near my home yesterday and saw a sign hanging at the public library proclaiming to passersby that it is Autism Awareness Month.
I realized this Autism Awareness Month is an essential symbol, and, potentially, a supportive lifeline to parents who must know: You are not alone.
You are not alone when you struggle with a challenging behavior problem, at home, at a family gathering, a house of worship or at the mall.
You are not alone when you find yourself sitting with people who have trouble understanding what you are going through—be they friends, family members, educators or health care professionals.
You are not alone when you have to make difficult choices, be they decisions about finances or careers, or just about how you would spend family time—choices that many other families are not put in a position to make.
And you are not alone when you find creative reasons to celebrate. Good behavior? Celebrate! Avoiding bad behavior? Celebrate! An advance in swimming, reading, eating, sitting at a table, brushing teeth, pretend play, peer communication, [fill in your favorite here]? Celebrate!
And so we are not alone when we recognize that it's Autism Awareness Month, and give credit to the efforts of advocates around the world who have not only elevated the profile of autism as an urgent public policy issue but have helped us understand we are not alone.
Some examples, from my e-mail in-box:
• April 2 was World Autism Awareness Day, an effort involving Autism Speaks, a leading advocacy group. Organizers scheduled events in more than 20 countries and at the United Nations in New York to discuss autism spectrum disorders, remove the stigma associated with the diagnosis and build societal supports for families.
• The head of the Autism Society of America rang the opening bell at the NASDAQ stock market on April 3.
• Toy retailer ToysRUs continued its efforts in past years by highlighting products that are suited to kids with disabilities. They worked with Autism Speaks to create the list. Clearly, this is geared to make sales for the retail chain, but they did choose to create this list which you can find here.
Those were just some of the events. Maybe you noticed them, or maybe you noticed media coverage about them.
Then again, maybe you didn't because you have too much to do, and you barely have time to do much of anything except to keep your life going. That would be understandable.
Just know that there are people like you doing the same.
Tuesday, April 22, 2008
Monday, March 31, 2008
Audio: Interesting Show on Autism at "Studio 360"
"No matter how hard he tries he knows he can't fit into the NT [neurotypical] world."
That's how radio producer Tamar Brott describes Jonthan Mitchell, a 52-year-old writer who has Asperger's. He is very high-functioning on the autism spectrum, and he writes stories that delve into his feelings of alienation, longing, obsession and rejection of special education programs. A profile of Mitchell is the first five-minutes of an illuminating hour-long public radio program on the arts and society at Studio 360 with Kurt Andersen.
A key reason you might want to listen to the program is Andersen's conversation with Blythe Corbett, assistant professor of clinical psychiatry, at the M.I.N.D. Institute, University of California at Davis. The Institute is a leading venue for autism research, and Corbett discusses in very clear language how scientists are examining research trends in genetics, environmental and other threads of inquiry to help them understand the origins of autism spectrum disorders. (The gist is that researchers are in the early stages of their work, and they are looking at a combination of factors that could include genetics, environmental factors, parental age and more.)
Below, find an audio clip of the first 11 minutes of the episode, which profiles Mitchell and introduces the rest of the show:
That's how radio producer Tamar Brott describes Jonthan Mitchell, a 52-year-old writer who has Asperger's. He is very high-functioning on the autism spectrum, and he writes stories that delve into his feelings of alienation, longing, obsession and rejection of special education programs. A profile of Mitchell is the first five-minutes of an illuminating hour-long public radio program on the arts and society at Studio 360 with Kurt Andersen.
A key reason you might want to listen to the program is Andersen's conversation with Blythe Corbett, assistant professor of clinical psychiatry, at the M.I.N.D. Institute, University of California at Davis. The Institute is a leading venue for autism research, and Corbett discusses in very clear language how scientists are examining research trends in genetics, environmental and other threads of inquiry to help them understand the origins of autism spectrum disorders. (The gist is that researchers are in the early stages of their work, and they are looking at a combination of factors that could include genetics, environmental factors, parental age and more.)
Below, find an audio clip of the first 11 minutes of the episode, which profiles Mitchell and introduces the rest of the show:
Other parts of the show discuss an art project organized by the M.I.N.D. Institute, and discussions of Amanda Baggs, a well-known autistic video blogger and neurodiversity advocate, and the film Autism: The Musical.
Find the Studio 360 website with a writeup of this episode by clicking here.
Saturday, March 22, 2008
Information About "Autism: The Musical" Documentary on HBO
The documentary "Autism: The Musical" is scheduled to appear on HBO starting March 25 at 8 p.m., and run various times through April 27. The documentary, directed by Tricia Regan, follows a group of autistic children and their families as they prepare to participate in a musical production in Los Angeles.
Tricia Regan gave an interesting interview with an online video program called The Alcove with Mark Molaro, in which she discusses her experiences filming the families and kids in this documentary. She explains how she saw how having an autistic child changes the lives of parents and their families, and how she came to see these families as heroic.
I found Regan's comments to be sensitive and interesting and so I have embedded a copy of the 18-minute video interview below. (If you have trouble seeing it you can also find it here.)
Tricia Regan gave an interesting interview with an online video program called The Alcove with Mark Molaro, in which she discusses her experiences filming the families and kids in this documentary. She explains how she saw how having an autistic child changes the lives of parents and their families, and how she came to see these families as heroic.
I found Regan's comments to be sensitive and interesting and so I have embedded a copy of the 18-minute video interview below. (If you have trouble seeing it you can also find it here.)
Also see:
Wednesday, March 05, 2008
McCain Says He Believes Vaccine Preservative Is Factor in Autism's Rise
Sen. John McCain of Arizona, the presumptive Republican presidential nominee, has gone on record as saying he believes that a mercury-containing preservative that was used in vaccines administered to young children is behind the rise in autism spectrum disorder.
The statement has created much buzz in the blogosphere because it taps into a raging controversy in the autism community about the causes of autism spectrum disorders and whether thimerosal, a mercury-containing preservative that is used in some vaccines, and used to be more widely used in routine shots very young children get, is a factor. While there are passionate advocates who believe there's evidence for this, there have also been a number of scientific studies published in recent years which have failed to establish this link, including a study published in January (see: California Study: Autism Cases Rise In Spite of Vaccine Changes).
McCain's statement came in response to a question at a forum Feb. 29 in the days before the Texas primary, according to the ABC News Political Punch blog. Here's a snippet from the coverage:
The statement has created much buzz in the blogosphere because it taps into a raging controversy in the autism community about the causes of autism spectrum disorders and whether thimerosal, a mercury-containing preservative that is used in some vaccines, and used to be more widely used in routine shots very young children get, is a factor. While there are passionate advocates who believe there's evidence for this, there have also been a number of scientific studies published in recent years which have failed to establish this link, including a study published in January (see: California Study: Autism Cases Rise In Spite of Vaccine Changes).
McCain's statement came in response to a question at a forum Feb. 29 in the days before the Texas primary, according to the ABC News Political Punch blog. Here's a snippet from the coverage:
At a town hall meeting Friday in Texas, Sen. John McCain, R-Ariz., declared that "there’s strong evidence" that thimerosal, a mercury-based preservative that was once in many childhood vaccines, is responsible for the increased diagnoses of autism in the U.S. -- a position in stark contrast with the view of the medical establishment.
McCain was responding to a question from the mother of a boy with autism, who asked about a recent story that the U.S. Court of Federal Claims and the National Vaccine Injury Compensation Program had issued a judgment in favor of an unnamed child whose family claimed regressive encephalopathy and symptoms of autism were caused by thimerosal.
"We’ve been waiting for years for kind of a responsible answer to this question, and are hoping that you can help us out there," the woman said.
McCain said, per ABC News' Bret Hovell, that "It’s indisputable that (autism) is on the rise amongst children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates that it’s got to do with a preservative in vaccines."
McCain said there’s "divided scientific opinion" on the matter, with "many on the other side that are credible scientists that are saying that’s not the cause of it."
The ABC News article goes on to cite a number of studies and statements from the medical establishment refuting McCain's view.
There is great interest among parents and families of people with autism spectrum disorders in this election year, and for good reason: the next president will have an influence over federal research dollars devoted to autism research; what kind of approach the Department of Education (and its experts on special education) will pursue in administering special education laws; how much federal aid to devote to education; what kinds of actions to take (or not take) in addressing the needs of disabled Americans; what kinds of judges to appoint to make decisions in cases involving disabled citizens including those with autism; and more (like whether to make autism an issue at all).
It's no wonder that more than half of Autism Bulletin readers who have voted in an unscientific poll cite "autism services" as a key issue in their vote. (See, Where Do Autism Services Fit Into Your Views on the Presidential Race?)
So McCain's views are interesting on this issue, and have raised hackles in the scientific community, as this post from The Chronicle of Higher Education indicates.
So far, this is McCain's only statement so far relating to auitsm during the campaign. A search on the McCain for President website using the word "autism" turns up a blank.
If you know of more statements by John McCain relating to autism, that involve more than the vaccine issue, please post a comment here.
Also see:
• Obama Unveils Disabilities Plan, Includes Autism in Agenda
• Autism Makes Ripple in Presidential Race as Clinton Promises to Spend $700 Million Per Year
• Where Do Autism Services Fit Into Your Views on the Presidential Race?
Saturday, February 23, 2008
More on Colorado Autism Insurance Case: Q&A with Tappert Family's Lawyer
R. Craig Ewing is managing partner at Ewing & Ewing, the Englewood, Colorado law firm which represented the Tappert family, who recently won an arbitration case for their health insurer to cover autism-related services for their young daughter Abby. Mr. Ewing last month agreed to respond to some questions I sent him via e-mail.
You can read more about the case in this article: Colorado Family Wins Insurance for Autism Services. A related article cited in the transcript below is here: After Colorado Arbitrator's Decision, More Information About Lovaas Model of Applied Behavior Analysis.
A key issue in this case was that the arbitrator's finding that Applied Behavior Analysis (ABA) is not an experimental therapy, but in fact an early intervention best practice for children with autism spectrum disorders—and a service the insurer should cover. With advocates around the nation seeking to win support for legislation expanding such insurance coverage, Mr. Ewing suggests this arbitration decision could shed some light on what it takes to win support from organizations who may seek to deny such benefits.
The following is a transcript of his responses to questions:
1. How important is the arbitrator's decision?
We believe that the arbitrator's decision is quite important in that it recognizes that ABA therapy is medically necessary when children with autism engage in self-injurious behaviors. We also believe that it casts doubt on many other insurer's medical policies (also known as clinical guidelines) that equate all forms of ABA therapy with "Lovaas therapy."
I note with interest the letter from Scott Cross and Vincent J. LaMarca, BCBA on your website [see the letter here]. The arbiter's comments regarding Lovaas therapy are based upon the expert testimony of Dr. Phillip S. Strain and his review of Anthem's medical policy. I am attaching Dr. Strain's affidavit as well as Anthem's medical policy for your review. As you will note in reviewing the same, Anthem (as well as many other insurers) deem ABA therapy to be experimental and investigational because of the scientific criticisms of Dr. Lovaas' research. Thus, it is important to distinguish pivotal response training and other forms of ABA therapy from "Lovaas therapy" in order to defeat the rationale advanced by many insurers.'
To the extent it is not confidential, I am very interested in sharing the information I gleaned through discovery on the Tappert case with Mr. Cross, Mr. LaMarca and others at the Lovaas Institute for the purposes of working with them to rebut the position taken with respect to Lovaas therapy by many insurers/third party administrators in the United States.
I am also enclosing United Healthcare's medical policy. As you will note, it relies on the criticisms of Dr. Lovaas' research as a basis for deeming all forms of ABA therapy "experimental and investigational."
2. How far-reaching might the Tappert's victory be?
The Tappert's victory opens the door for coverage for ABA therapy of the type Abby Tappert receives for Colorado residents who purchased the Anthem policy at issue. This is a major breakthrough for this subset of people.
While the Arbitration Award (opinion) is not direct legal authority in the same sense that a decision from the Colorado Court of Appeals or Colorado Supreme Court would be, it is written by William G. Meyer, a highly respected former Denver District Court judge. The opinion is thoughtful and well reasoned and no doubt it will be used by attorneys to support their clients' claims for autism coverage.
In his opinion Judge Meyer's states: "It appears both from the greater weight of the references and credible testimony that ABA therapy is the standard of care in treating autism." This statement should resonate with any judge or fact finder who confronts these issues.
3. What role did Colorado state law play in your advocating this case on behalf of the Tapperts? How does the law as it stands now in Colorado help or hinder your efforts?
The fact that the Tappert policy was not subject to the Employee Retirement Income Security Act of 1974 ["ERISA"] made the case easier with respect to the standard of review employed by the arbiter. In terms of Colorado state law, Colorado's common law that requires ambiguous terms of an insurance policy to be interpreted in favor of coverage was helpful in this case.
4. Have you been following developments in other states, notably South Carolina and Texas, that have sought to pass legislation to require insurers to cover ABA and other autism-related services? There are other states which are considering similar moves, and I am wondering if this arbitration decision gives advocates of autism services coverage any points they may use to argue in favor of their efforts?
Since becoming involved in this case, I have become very interested in the legislation regarding autism in other states. Given that approximately 1 in 150 children have been diagnosed with autism, funding for treatment must be addressed. It is my opinion that a neutral [party]'s recognition that ABA therapy is the standard of care for the treatment of children with autism may be useful to others seeking to enact legislation to require insurers to cover this expensive, but much needed treatment. I am hopeful that with more decisions recognizing the efficacy of ABA therapy, legislators will be more inclined to find ways to fund this treatment.
One last note: Mr. Ewing declined to say for publication on this blog whether he saw how insurers who study the Tappert case might try to bolster their efforts to deny coverage of ABA or other autism services.
You can read more about the case in this article: Colorado Family Wins Insurance for Autism Services. A related article cited in the transcript below is here: After Colorado Arbitrator's Decision, More Information About Lovaas Model of Applied Behavior Analysis.
A key issue in this case was that the arbitrator's finding that Applied Behavior Analysis (ABA) is not an experimental therapy, but in fact an early intervention best practice for children with autism spectrum disorders—and a service the insurer should cover. With advocates around the nation seeking to win support for legislation expanding such insurance coverage, Mr. Ewing suggests this arbitration decision could shed some light on what it takes to win support from organizations who may seek to deny such benefits.
The following is a transcript of his responses to questions:
1. How important is the arbitrator's decision?
We believe that the arbitrator's decision is quite important in that it recognizes that ABA therapy is medically necessary when children with autism engage in self-injurious behaviors. We also believe that it casts doubt on many other insurer's medical policies (also known as clinical guidelines) that equate all forms of ABA therapy with "Lovaas therapy."
I note with interest the letter from Scott Cross and Vincent J. LaMarca, BCBA on your website [see the letter here]. The arbiter's comments regarding Lovaas therapy are based upon the expert testimony of Dr. Phillip S. Strain and his review of Anthem's medical policy. I am attaching Dr. Strain's affidavit as well as Anthem's medical policy for your review. As you will note in reviewing the same, Anthem (as well as many other insurers) deem ABA therapy to be experimental and investigational because of the scientific criticisms of Dr. Lovaas' research. Thus, it is important to distinguish pivotal response training and other forms of ABA therapy from "Lovaas therapy" in order to defeat the rationale advanced by many insurers.'
To the extent it is not confidential, I am very interested in sharing the information I gleaned through discovery on the Tappert case with Mr. Cross, Mr. LaMarca and others at the Lovaas Institute for the purposes of working with them to rebut the position taken with respect to Lovaas therapy by many insurers/third party administrators in the United States.
I am also enclosing United Healthcare's medical policy. As you will note, it relies on the criticisms of Dr. Lovaas' research as a basis for deeming all forms of ABA therapy "experimental and investigational."
2. How far-reaching might the Tappert's victory be?
The Tappert's victory opens the door for coverage for ABA therapy of the type Abby Tappert receives for Colorado residents who purchased the Anthem policy at issue. This is a major breakthrough for this subset of people.
While the Arbitration Award (opinion) is not direct legal authority in the same sense that a decision from the Colorado Court of Appeals or Colorado Supreme Court would be, it is written by William G. Meyer, a highly respected former Denver District Court judge. The opinion is thoughtful and well reasoned and no doubt it will be used by attorneys to support their clients' claims for autism coverage.
In his opinion Judge Meyer's states: "It appears both from the greater weight of the references and credible testimony that ABA therapy is the standard of care in treating autism." This statement should resonate with any judge or fact finder who confronts these issues.
3. What role did Colorado state law play in your advocating this case on behalf of the Tapperts? How does the law as it stands now in Colorado help or hinder your efforts?
The fact that the Tappert policy was not subject to the Employee Retirement Income Security Act of 1974 ["ERISA"] made the case easier with respect to the standard of review employed by the arbiter. In terms of Colorado state law, Colorado's common law that requires ambiguous terms of an insurance policy to be interpreted in favor of coverage was helpful in this case.
4. Have you been following developments in other states, notably South Carolina and Texas, that have sought to pass legislation to require insurers to cover ABA and other autism-related services? There are other states which are considering similar moves, and I am wondering if this arbitration decision gives advocates of autism services coverage any points they may use to argue in favor of their efforts?
Since becoming involved in this case, I have become very interested in the legislation regarding autism in other states. Given that approximately 1 in 150 children have been diagnosed with autism, funding for treatment must be addressed. It is my opinion that a neutral [party]'s recognition that ABA therapy is the standard of care for the treatment of children with autism may be useful to others seeking to enact legislation to require insurers to cover this expensive, but much needed treatment. I am hopeful that with more decisions recognizing the efficacy of ABA therapy, legislators will be more inclined to find ways to fund this treatment.
One last note: Mr. Ewing declined to say for publication on this blog whether he saw how insurers who study the Tappert case might try to bolster their efforts to deny coverage of ABA or other autism services.
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