Input to the IACC Due September 30th (that’s tomorrow)

Tomorrow, September 30th, is the deadline to submit a comment regarding the Interagency Autism Coordinating Committee (IACC)’s Draft Strategic Plan for ASD Research. Feedback is sought from ASD stakeholders which means—as you’re reading this blog—you: individuals with ASD and their families, scientists, health professionals, therapists, educators, officials of state and local programs for ASD, and the public at large. The draft Strategic Plan can be accessed via this webpage (scroll down for a link to a PDF file). (The draft Strategic Plan does not include cost estimates for implementation; a workgroup has been formed to advise about the IACC budgetary requirements needed to fulfill the research objectives described in the draft Strategic Plan.)

Responses to the plan should be directed to iaccservices@mail.nih.gov . The IACC will review the workgroup recommendations at its next meeting on November 21, 2008. Please limit your response to two pages (approximately 1,000 words) and mark it with the RFI identifier NOT-MH-08-021 in the subject line. Go here to see the official RFI notice NOT-MH-08-021, and here is the IACC website.

The draft Strategic Plan addresses these questions:

• When should I be concerned?
• What are the early warnings signs?
• Are there typical characteristics that are part of an ASD diagnosis?
• How much variation is there in symptoms and severity associated with ASD?

• How can I understand what is happening?
• What is happening early in development?
• Are there known biological differences that help explain ASD symptoms?
• Are there subgroups of people with ASD that have been identified?

• What caused this to happen and can this be prevented?
• Is there something in my genetic or family history that poses a risk for ASD?
• How might genetics and/or the environment influence the occurrence of ASD?
• Could an exposure to something in the environment lead to the development of ASD?

• Which treatments and interventions will help?
• When should treatments or interventions be started?
• What are the medical issues I need to know about?
• How do I know that treatments are both safe and effective?

• Where can I turn for services?
• What types of services and supports should I seek and where can I find them?
• What is my state or local government doing to provide services for ASD?
• What is the cost of interventions and how will it be paid?

• What does the future hold?
• What will my family member be like when he/she gets older?
• What is known about adults with ASD and how can I plan for the future?
• How does American society support individuals with ASD?

When does one first detect signs of autism in a young child and how “severe” is a child’s autism, and how come my autistic child can’t do somethings (like talking) that other autistic children can? What causes autism—-how did this happen? What can I do as far as medical as well as educational treatments? And what about getting by day by day—-what about services, where do I find them, are some towns or even states better than others? And what will happen to my child as she or he grows up—-what if my child still needs a lot of supports and staff when I’m old?

That’s my paraphrasing of the main questions the draft Strategic Plan addresses. For each question, the draft Strategic Plan identifies an Aspirational Goal as well Research Opportunities, Short-Term Objectives, and Long-Term Objectives. I’ll quote the Aspirational Goals:

• Children with or at risk for ASD will be identified by 24 months and receive appropriate interventions.

• Discover how ASD affects development which will lead to targeted and personalized interventions.

• Causes of ASD will be discovered that inform prognosis and treatments and lead to prevention/preemption of the challenges and disabilities of ASD.

• Interventions will be developed that are effective for reducing both core and associated symptoms, for building adaptive skills, and for preventing the disabilities associated with ASD.

• Communities will implement high quality, evidence-based and cost effective services and supports across the lifespan for people with ASD.

• Advances in intervention, education, and services will support and enable individuals on the autism spectrum to lead fulfilling and productive lives in the community.

How to develop services and education to enable my son to lead a “fulfilling and productive” life and in the community—-that’s my main focus in the comment I’m writing. I’m in favor of devoting as many resources as we can to actual, alive and breathing autistic individuals. I’m always interesting in finding out more about the causes of autism. But I’m not sure resources are best used to find out how to prevent autism in children who have yet to be born, when so many children (like the child of the mom I just spoke to on the phone tonight) don’t have enough services and don’t have the right kind of educational program. That’s when life with autism feels hopeless and endlessly awful, and yes, there’s been a lot of time when our life with Charlie has been extremely difficult and when we’ve been through way too much; when he’s been through way too much: He’s only 11 years old, but he’s moved households eight times, been labeled a danger to himself and others, been in effect expelled from the schools in one public school district, had people look at him in not kindly ways and mouth “something,” just because he is who he is.

I talk, sometimes rather ad infinitum if not ad nauseam here about school and the importance of high quality education and program for autistic individuals. Charlie has always done best, and been happiest, when the better part of his day has been busy and his mind kept engaged and stimulated. Sitting in a regular classroom with other children does not provide this for Charlie; I know he’d try to sit and listen, but after a few minutes he would probably be asking for a break. We’re lucky that he’s in a classroom where the teachers and therapists know how to individualize their teaching to what Charlie needs, and who have helped him to manage his anxiety and, slowly, communicate this more to us.

And maybe it seems like a small small thing to talk about “better services,” and that we should rather  seeking ways to prevent autism and cure it. I really am convinced that, not too long ago, Charlie would have been packed off to a residential placement relatively early and I think, I hope, we’re slowly on our way to developing ways to enable autistic individuals to be educated and be included in as many ways as possible in their communities and at home. And really to do this right for all autistic individuals and their families—-this is something to aspire to indeed.