If you weren’t able to listen in to yesterday’s meeting of the IACC meeting, this is a brief summary:

In the morning, the committee members reviewed the draft of the Strategic Plan and “wordsmithed” various additions and revisions suggested by various members of the IACC. These revisions included:

• the use of “may” or “can” in regard to describing the effects of Early Intervention
• mention of “comorbid” and “co-occurring” (medical) conditions
• a lengthy discussion about vaccines and about what science and evidence there is to refute or support a link (it was decided to include the statement “the weight of the available evidence does not support a link between autism and vaccines”—more details about this are below)

Much more of the draft of the Strategic Plan remains to be reviewed and there was talk about the committee reconvening in December to finish reviewing the revisions.

Paula Durbin-Westby of the Autistic Self-Advocacy Network (ASAN) gave a well-received presentation on the need for ethics in autism research. There’s a need for research on the strengths of autistic individuals, she said, and on the positive aspects of difference, and it’s necessary that autistic individuals be fully represented on the IACC.

In the afternoon, there were detailed presentations on Medicare and Medicaid and on waivers (prompting the Chair of the IACC to note that these systems are as or even more complex that various topics in biochemistry); on the pressing need to focus on adult issues (will the employment rate for autistic persons be better in the future?, Dr. Cathy Pratt asked); on the waivers and other programs in Pennsylvania’s Bureau of Autism Services; and on the Autism Spectrum Disorder Pilot Program in Connecticut.

Pamela Beck spoke about her 24-year-old son Brandon Beck and the self-direction model. The Executive Directors of two agencies providing services and supports for adults in California (Dr. Jeffrey L. Strully of Jay Nolan Community Services) and in Maryland (Ms. Emily Homer of VOCA of Maryland D.C.) described the realities and successes of their programs, and of the intense need for staff: What are traits of staff who are really good at supporting people?

After comments from six members of the public, the meeting was adjourned.

There’s more to note—-will end for now with a quote from Lee Grossman, President and CEO of the Autism Society of America:

“”it’s what we hear the community is asking the most for—lifespan services.”"

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.

Researchers are “confident” that it will become “routine to diagnose autism for children just 18 months old and sometimes even younger” after a five-year study to be conducted by researchers at the University of Michigan, the University of California-Davis and the University of Washington. A total of 108 children between the ages of 12-24 months who have “symptoms of autism” will be enrolled in the study, the University of Michigan notes. The researchers in the study include Catherine Lord, University of Michigan professor of psychology, psychiatry and pediatrics, and director of the U-M Autism and Communication Disorders Center, and UC Davis M.I.N.D. Institute researcher Sally J. Rogers and University of Washington Autism Center researchers:

Lord is confident U-M research will make it routine to diagnose autism for children just 18 months old and sometimes even younger.

The intervention to be tested—the Early Start Denver Model—fuses developmental and relationship-based intervention techniques with applied behavior analysis teaching strategies. It focuses on using play and positive reciprocal interactions to teach a developmental curriculum designed for each child based on current abilities and interests. The individualized approach makes the model easy to adapt for younger children.

A combination of the developmental curriculum, teaching techniques based on applied behavior analysis, and warm, engaging social exchanges between an adult and the child is used to achieve measurable treatment goals targeting affective connection, social relatedness and communication skills.

As the parent of a 10 1/2 year old son with autism who was diagnosed when he had just turned two years old in July of 1999—and who had been showing symptoms of autism by the time he was 18 months and subtle gross and fine motor delays throughout his babyhood—-what is most noteworthy about this new study is how familiar the “Early Start Denver Model” sounds to me. The combination of intensive ABA and play, “positive reciprocal interactions” with “warm, engaging social exchanges between an adult and the child” is pretty much what Charlie did when he started an intensive ABA program in September of 1999; it’s a combination that Charlie seems to like and to learn best from: Not that every child will, or that every child will continue to do this combination of therapies in a 1:1 setting as Charlie has. Charlie did not simply “benefit” from Early Intervention; he needed it and we needed it to learn, at that early time in his life how to help him.

That said, in any discussion of Early Intervention, and about the need to “hurry, hurry, hurry” and “intervene” in a child’s delayed developed and perhaps even prevent autism, I have to note that there are some things that Charlie has learned not because of our intense efforts to teach, but because he has gotten older. Yes, growing up raises new questions and concerns, but an older Charlie is—like older children of any diagnosis—an older child, able to understand more, do more, help us, try to be independent. For us, it was good to get an early diagnosis and start learning about autism and about how best to help Charlie, and to understand how being the parents of a disabled child is full of much that is different and unexpected—–and too good to miss a moment of.