Government Panel Seeks Input on Autism Research Priorities

What should the nation prioritize to advance research on the treatment of autism spectrum disorders (ASD)? On the diagnosis of autism? Risk factors for autism? The biology autism? Or other areas?

The National Institute of Mental Health has issued a request for information to members of the autism community asking for information on what community members believe should be the priorities for autism research.

The deadline for submitting information is January 4, 2008. The Interagency Autism Coordinating Committee established by the Combating Autism Act of 2006 will use the input to develop a strategic plan. The request is aimed at people with autism spectrum disorders, their families, advocates, scientists health professionals, therapists, educators, state and local programs for ASD, and the general public.

You can read the request for information here. An excerpt from the document explains:

The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research. The IACC includes both Federal and public members who are active in the area of ASD research funding, services, or advocacy. In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input. This RFI is a first step in receiving broad input at the beginning stages of plan development.

To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:

• Treatment – includes ASD treatment, intervention, and services research that aim to reduce symptoms, promote development, and improve outcomes. This area includes the development and evaluation of medical, behavioral, educational, and complementary interventions for ASD. In addition, this area includes research studies that evaluate the effectiveness of treatments in real world settings, disparities in ASD treatment among specific subpopulations, practice patterns in ASD programs and services, and their cost-effectiveness.
• Diagnosis – is concerned with the accurate and valid description of ASD (phenotype) both at the individual and the population level. The public health impact of ASD can be better understood by such studies. In addition, this area concerns itself with the diversity of what constitutes ASD and the characteristics of the condition over the lifespan.
• Risk Factors – has to do with investigations of the factors that contribute to the risk of having an ASD in a given person or population. This includes genetic studies of clusters or sporadic occurrences of ASD, studies that focus on environmental factors, e.g., intrauterine events or exposure to toxins, which could lead to ASD, and the interaction between these factors that concentrate risk for ASD.
• Biology –studies the underlying biological processes that lead to developmental and medical problems associated with ASD. This includes research in the area of neurosciences but does not confine itself to neurosciences. Therefore, research on other organ systems, interactions between organ systems, and/or other disease processes are included in this area.

The development of the strategic plan is expected to take approximately six months and will include several additional opportunities for public input.

Send your ideas to the Interagency Autism Coordinating Committee at iacc@mail.nih.gov. Please read the guidelines before doing so, such as the need to mark proprietary information and the requested two-page limit for comments.

Also see:

* Advocates, Parents Among Those Appointed to Autism Committee at National Institutes of Health

Autism Speaks Pushes Health Insurance Coverage in Florida, California and Michigan

Advocacy group Autism Speaks today announced it would work to pass legislation in Florida, California and Michigan to require health insurers to cover autism services such as ABA.

The group's leaders Bob and Suzanne Wright said they plan to meet with Florida Governor Charlie Crist and legislative leaders in what they hope will be a bipartisan effort to pass legislation requiring health insurers to cover autism-related therapies like Applied Behavior Analysis (ABA) "and other structured behavioral therapies, which are the most effective forms of treatment and have the best outcomes, both in human costs and in long-term economic benefits."

"It's time for insurance companies to step up and assume some of the financial burden now shouldered by families and school districts," said Bob Wright. "The autism community is mobilized and determined to go state-by-state state and knock on every legislator's door until these unreasonable insurance laws are changed. It's time to remove these barriers to care."

The announcement cites the fact that so far, Indiana, South Carolina and Texas are the only states which require insurers to cover autism-related services and asserts: "Nationwide, few private insurance companies or other employee benefit plans cover Applied Behavior Analysis and other behavioral therapies. In fact, most insurance companies designate autism as a diagnostic exclusion, meaning that no autism-specific services are covered, even those that would be used to treat other conditions."

As part of this advocacy effort, Autism Speaks posted a paper citing arguments in favor of autism insurance coverage. You can see the PDF document here. It's the same document that advocates in Arizona published on their website. For more on that, see "Arizona Advocates Prepare for Autism Insurance Push."

The choice of these big states is interesting as we enter a presidential election year in which health care is an important issue. So far in the campaign autism has been mentioned briefly, if notably, by Democrat Hillary Clinton. (See "Autism Issue Makes Ripple in Presidential Race.") Autism Bulletin readers responding to an online poll posted Dec. 17 identified autism services as the most important factor in their presidential choice.

It's an election year at the state level, too, and that's where the autism insurance battles will be fought. Autism Speaks said it plans to continue advocating for passage of a bill in Pennsylvania that was pending earlier in 2007 and faced opposition from business lobbyists.

Autism Speaks is one of the nation's biggest autism advocacy groups, and funds research and education initiatives as well as advocacy efforts. It was founded by the Wrights who have an autistic grandson. Bob Wright is the former CEO of NBC.

Also see:

* Michigan to Hold Hearing on Autism Insurance Legislation

* Related Autism Bulletin coverage of the health insurance issue

New on Autism Bulletin's Sidebar: Special Education and Disability News from PatriciaEBauer.com

Readers new to Autism Bulletin should check out what I call the "sidebar" which is the column on the right side of this website that has lists and links to other resources. I've added a new one today.

PatriciaEBauer.com is the blog and website providing news and commentary on disability issues authored by Patricia E. Bauer, a veteran journalist and editor. She notes on her website bio that she and her husband helped to establish the Pathway Program at UCLA, a post-secondary program for young adults with intellectual disabilities. They are the parents of two young adults, one of whom has Down syndrome and is a survivor of leukemia.

Note for e-mail subscribers: other resources in the sidebar include autism news via GoogleNews, links to reports and books I have found useful, recent court decisions involving special education law, other resources and some how-to articles such as how to plan a community outing.

After Colorado Arbitrator's Decision, More Information About Lovaas Model of Applied Behavioral Analysis

Last month, an arbitrator ruled in favor of a Colorado family which fought to have its health insurance company reimburse them for autism-related services for their young daughter—specifically for Applied Behavior Analysis (ABA) sessions which the insurance company denied. The arbitrator ruled that the insurer, Anthem Blue Cross Blue Shield, improperly denied the family's claims for two years worth of services worth about $110,000.

You can read more background in this Autism Bulletin story from December 9: Colorado Family Wins Insurance for Autism Services. One of the points the arbitrator made in her decision was that "Anthem erroneously equates ABA therapy with Lovaas therapy—an approach which has received considerable justifiable scientific criticism. ABA therapy is based upon incidental teaching and pivotal response training, which Dr. Strain testified is the standard of care when dealing with autistic children."

That quote puzzled me because I had read Ole Ivar Lovaas, now a professor emeritus at University of California at Los Angeles, was one of the founders of ABA. So I wrote to the Los Angeles-based Lovaas Institute, which provides autism services using Lovaas' method, and asked them to help me understand more about them and what this arbitrator could have been talking about.

Below is the response I received from Scott Cross, clinical director, and Vincent J. LaMarca, of the institute's human resources department. Both cite their credentials as board-certified behavior analysts, or BCBAs.

On behalf of Dr. Lovaas and the Lovaas Institute, thank you for your inquiry. I can understand from the blog posting why you would have questions about the relationship between “Lovaas therapy” and ABA.

First, you are correct that in laymen’s terms “Lovaas therapy” is “a type of ABA.” In fact, we are more likely to refer to our program as the “Lovaas Model of Applied Behavior Analysis.” We provide behavioral treatment, based on the principles of applied behavior analysis, researched under the direction of Dr. Lovaas, and replicated by other professionals at other sites throughout the world.

Second, the quote from the arbitrator is somewhat curious. On one hand, it states “Lovaas therapy…has received considerable justifiable scientific criticism.” On the other hand, it promotes applied behavior analysis (ABA) by mentioning the Surgeon General report and the National Institute of Mental Health’s publication. This is curious because, after stating, “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior,” the Surgeon General report’s next sentence states, “A well-designed study of a psychosocial intervention was carried out by Lovaas and colleagues (Lovaas, 1987; McEachin et al., 1993).” The National Institute of Mental Health’s publication also mentions Dr. Lovaas. Immediately after citing the Surgeon General report, it states that the work of Dr. Lovaas “laid a foundation for other educators and researchers.”

It’s possible that what is really meant in the arbitrator’s decision is that Anthem was wrong in making a decision on applied behavior analysis by only consulting studies associated with the Lovaas Model of Applied Behavior Analysis. Applied behavior analysis is a scientific discipline with a wealth of research. While Dr. Lovaas is honored to have contributed to that research, it is but the tip of the iceberg. One need only peruse the Journal of Applied Behavior Analysis to understand why a claim that ABA therapy is “investigational and experimental” is incorrect. There are a multitude of research articles demonstrating the efficacy of applied behavior analysis in teaching new skills to children, adolescents, and adults with autism.

Finally, it is somewhat disconcerting that the testimony, as depicted in the arbitrator’s decision, appears not only to place the Lovaas Model and applied behavior analysis in opposition (as it shouldn’t), but also to downplay some of the Lovaas Model’s treatment procedures in early intervention. It is an enormous oversight that discrete trial teaching (while not the only ABA instructional strategy) is left out of the testimony as an important component of an ABA program. Consider that all of the multi-site replications have been initially discrete trial based and have explicitly stated so in their method sections.

Behavioral treatment for children with autism is currently undergoing a lot of branding, with Verbal Behavior, the Lovaas Model, and Pivotal Response Teaching as the three names used most frequently. To what extent this is helpful or harmful to treatment is an important discussion in which we at the Lovaas Institute are currently taking part with other professionals. We would agree that there is a need for researchers to clarify the similarities and differences of different approaches as well as to study which approaches are more helpful for which children.

In the meantime, I would point out that while the Lovaas Model of Applied Behavior Analysis may have received scientific criticism, the National Academy of Science report (mentioned by Dr. Strain) also states that the Lovaas Model (a.k.a. Young Autism Project) “has generated the most rigorously controlled early intervention research published to date.”

And since that publication in 2001, two replication studies of the Lovaas Model have been published by independent authors, again demonstrating the effectiveness of our approach (Sallows & Graupner, 2005 and Cohen et al., 2006).

Sallows, Glen O. & Graupner, Tamlynn D. (2005). Intensive Behavioral Treatment for Children with Autism: Four-Year Outcome and Predictors. American Journal on Mental Retardation, 110 (6), 417-438.

Cohen, Howard, Amerine-Dickens, Mila, Smith, Tristram. (2006). Early Intensive Behavioral Treatment: Replication of the UCLA Model in a Community Setting. Journal of Developmental & Behavioral Pediatrics, 27 (2), 145-155.

Sincerely,

Scott Cross, PhD, BCBA

Vincent J. LaMarca, BCBA

Where Do Autism Services Fit in Your Views on the Presidential Race?

With the Iowa caucuses and New Hampshire primary just weeks away, the question came up at a gathering I attended over the weekend: how important is a presidential candidate's stance on autism services to your vote?

The consensus I heard among four voters at the table was that the issue has to be on the candidate's list of action items. Last month, Sen. Hillary Rodham Clinton of New York made autism an issue in her campaign by pledging to fund $700 million per year to expand research, diagnostic efforts and services for both children and adults with autism spectrum disorders. (See "Autism Issue Makes Ripple in Presidential Race as Clinton Promises to Spend $700 Million Per Year." A number of Democrats—Barack Obama, John Edwards, Christopher Dodd and Bill Richardson—mention support for autism services in their record. I couldn't locate any recent notes online for any of the Republican candidates.)

With so much going on in the country and world, it seems difficult at this stage of the presidential race to isolate autism as a campaign issue—even for those of us for whom it is a constant, daily presence. So I'm asking you, Autism Bulletin readers, to weigh in. I've created a poll below, where you can click on your choice for the most important issue. If you don't see your issue listed, you can post your comment below. E-mail subscribers can go here to see the poll.