January 4th is Friday—-Responses to the NIMH’s Request for Information about Autism Research Priorities is Due

What better way to start the new year than making your voice heard to the NIMH with your suggestions in response to a Request for Information (RFI): Research Priorities for the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorders (ASD).

Please send responses to iacc@mail.nih.gov no later than January 4, 2008.

Keep in mind that research does not only refer to scientific studies on genetics, the environment, neuroscience, and the like: Research also refers to research about the delivery of services and treatments. Some commenters have pointed out, for instance, that there are already resources about the use of restraints and of seclusion: How, then, can more and (ideally) all school districts and centers and programs know about these resources, and have qualified professionals to train and supervise staff? Further: Aversion therapy that involves the use of electric shock is still used in this country at the Judge Rotenberg Center: What about research about the efficacy, or non-efficacy, of such a treatment? (which I personally have serious reason to question.)

For more information, read a condensed version of the NIMH’s RFI below; for the full version, go here.

On November 30th, the Interagency Autism Coordinating Committee met and approved a process to develop a Strategic Plan for research on autism. Notes the NIMH’s Request for Information (RFI):

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.

Information Requested

We are interested in receiving your input and ideas about what are high-priority questions and issues for advancing research on ASD. We ask for your constructive and specific suggestions in the following areas (please refer to the above descriptions for each area).

What topics or issues need to be addressed to advance research on the:

1. Treatment of ASD?
2. Diagnosis of ASD?
3. Risk factors for ASD?
4. Biology of ASD?
5. Other areas of ASD research?

Responses

Please send responses to iacc@mail.nih.gov no later than January 4, 2008.

Please limit your response to two pages and mark it with this RFI identifier NOT-MH-08-103 in the subject line. The responses received through this RFI will be collated, summarized, and provided to scientific workshop participants in January 2008. Summarized results will also be made available to the public. Any proprietary information should be so marked. Respondents will receive an email confirmation acknowledging receipt of their response, but will not receive individualized feedback.

I read this statement to the IACC meeting on November 30th, and much of what I said is at the core of the response I’m now writing. In addition to a request for research on education and schools, I am including a request for research on how to train teachers and therapists to teach autistic children to best manage self-injurious and aggressive behavior: My son has struggled with both of these types of behaviors for the past few years and now rarely engages in them. There are strategies and training that teachers, therapists, and parents can learn to deal with these behaviors, and these methods can make a significant difference in the lives of autistic children.

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