The Interagency Autism Coordinating Committee (IACC) is meeting today from 9am to 4pm, at the National Institutes of Health Neuroscience Center, Conference Room A (6001 Executive Boulevard, Rockville, MD 20892). You can listen in virtually via a webinar:

Use this link:

https://www1.gotomeeting.com/register/446892042

Or, you can attend via conference call at these numbers:

USA/Canada Phone Number: 888-455-2920
International Phone Number: 212-287-1838
Access code: 3857872

The agenda for today’s meeting is to complete the review of the IACC Strategic Plan for ASD Research Strategic Plan. The Strategic Plan addressed six questions:

1) 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?

2) 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?

3) 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?

4) 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?

5) 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?

6) 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?
There’s more about the six questions here.

Review of the plan was on the agenda for the November 21st meeting, which I attended. The committee had to consider each and every revision; many of the revisions were made by Lyn Redwood, Vice President of Safe Minds (= “Sensible Action for Ending Mercury-Induced Disorders”).

Starting here, I live-blogged some of the November 21st meeting. A sense of some of the discussion about revisions to the Strategic Plan is evident here, in an exchange about research regarding a hypothetical vaccine-autism link between Redwood and Dr. Edwin Trevathan, Director of the National Center on Birth Defects and Developmental Disabilities at the CDC.

Dr. Thomas Insel, director of the NIMH, referred to the the detailed rewording of certain sections of the Strategic Plan as “wordsmithing. Many of these revisions were in reference to defining autism as a “biological” and “biomedical” disorder, and to vaccines. Whenever, it seems, these two particular topics were mentioned in the Strategic Plan, Redwood had made revisions and, in many cases, rather extensive ones. Generally the other committee members did not propose such extensive revisions, and generally the other committee members did not speak too much or at much length.

Regardless, midway through the November 21st meeting, the committee was still on the third question and Dr. Insel said that he wanted to complete the revision of the plan, and talked about meeting in December.

I really wanted to hear what the IACC had to say about the full Strategic Plan and was disappointed that they were only able to get not even halfway through the revisions. In particular, I wanted to be present at the discussion about questions 5 and 6, and especially about services and supports for autistic adults. A presentation about services for autistic adults was scheduled in the latter half of the meeting, to be given by Ellen Blackwell, MSW, of the Centers for Medicare and Medicaid Services, and Lee Grossman, President and CEO, Autism Society of America, and I learned a great deal from this, especially about different possibilities for housing for Charlie when he’s an adult.

And one hopes that we can stay focused on addressing the needs of autistic individuals here and today and tomorrow.

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.”"

Charlie and I went to the playground today.

That probably doesn’t seem to be anything much to report, especially given other things going on this week. Charlie and I haven’t been to the playground in a while—in several months—and there was a time when we went at least twice a day. After school and before dinner. Mid-morning (on a weekend or holiday) and sometime after 3pm. Many posts when I first started blogging recount those hours of Charlie climbing and trying to walk up slides with the summer sun beating down on us.

With the sun just starting to set, Charlie climbed up a rope net. He’s so tall now that he really only had to reach out his hands to grasp the wood edge and pull himself up. He tramped up the slides several times, then went down the rope net. I walked around, trying to guess if the stormclouds would finally leave the sky—-today was a crazy weather day, sunny one moment and a driving downpour the next. Yes, I no longer have to keep constant watch on Charlie, lest he lose his balance or forget to duck so his forehead doesn’t bump a metal bar. Just in the past few weeks, he seems to have gained a inch or so: The playground poses no challenges, not anymore.

Jim was giving a lecture in Manhattan; after the playground, Charlie said “yes” to brown noodles—-shrimp chow fun from a Chinese restaurant that proclaims “NO MSG!” on its menu. We each got a plastic dish of steaming, slightly gooey-sticky noodles with green onions. Charlie opened both fortune cookies. One said,

Success is a journey, not a destination.

Too appropriate—life with Charlie is a journey of faith, love, grit, and hope.

The other fortune said,

Watermelon [and gave the Chinese word, xi gua].

This post tells a bit about Charlie’s longstanding fondness for this particular fruit (we’ve got a half-plus in the fridge right now).

It was a peaceful mom-and-boy kind of evening, with Jim calling to check in. In years past—when Jim was teaching at night and commuting from central New Jersey up to the Bronx daily—-there were a lot of mom-and-boy kind of days. Sure, we’d go out—Charlie did gymnastics class in those days, and some verbal behavior sessions, and there were inevitable trips to Target, grocery stores, malls, and book and toy stores—-but these were interludes in the long stretches of time. Sometimes, it was a tough day and it just seemed better to shut the door to strangers with raised eyebrows.

Yes, it got lonely, though, of course, we were never alone, me and Charlie together. I started blogging in June of 2005 in part because I just wanted to connect. As Charlie’s behavior problems increased, we could feel ourselves keeping more and more to ourselves, becoming more and more isolated. I blogged and—yes, it’s not the same as meeting people face to face and shaking hands and drinking coffee at the same table—-but when you blog, you don’t have to get a babysitter, and you can do it anytime—when Charlie was sleeping, or when Jim took him on a bike ride. And certainly it’s through the internet and blogging that I’ve “met” more people who have a stake in what gets said about autism.

Still I can’t forget the sense of shared experience and recognition I felt when, some years ago, I was at a conference and, when I asked why I was there, said “I have a child with autism.” “So do I,” both of my breakfast companions said, almost simultaneously.

I try to only go to things now that are nearby, in New York or Philadelphia (Washington D.C. is a bit of stretch, to tell the truth). Charlie seems to miss me more now that he’s older, for the sake of his sense of order (and mine, too).

Right now the Autism One conference is being held in Chicago. “Healing” and “recovery” from autism aren’t things I worry about, as you know if you’ve been reading here for a while (and you’ll also know I’m not world’s biggest fan of the conference’s keynote speaker, Jenny McCarthy). I was interested to see that AutismOne features a whole section on “Health and Happiness,” and specifically on “Mom’s Health and Happiness.” Sessions have topics like “Let Go through Radical Self-Forgiveness” and “The Blame Game” and “Are You Predisposed?”—topics which remind me that, for all that we say that “no one believes in the refrigerator mother theory of autism,” parents (mothers in particular) are still blaming themselves. Not because of being “cold” or “withdrawn” parents, but because of their genes, or of something they ate or didn’t eat during pregnancy, or because they realized they lived too near a power plant. And for sure, parents feel an (invisible) accusatory finger pointed at them when child “misbehaves in public,” or when something tragic like this happens.

So sure I’ve got my views about vaccine court and the ethical lapses of some research about thimerosal and autism. The news that got me excited today was about Pennsylvania allowing Medicaid funds to be used for autistic adults: I think a lot these days about Charlie’s future, about job possibilities and where he’ll live. Already Jim and I have reached another milestone in our life parenting our boy growing up into a teenager: Jim has given Charlie his last piggy back ride (and has a sore back to prove it).

I think a lot about how I hope Charlie will know that we’re always with him, even if we can’t–won’t—always be here beside him. And I hope he can always keep a piece of the peaceful easy-feeling we shared one May evening, on the playground and over chow fun with a taste of watermelon, one more evening on our journey together—who knows the destination?

A study in the March 2008 volume of Pediatrics on psychotropic medication use among Medicaid-enrolled children with autism spectrum disorders noted that there is “ongoing debate” about the uses of psychotropic medications. Only Risperidone, an atypical neuroleptic, has received FDA approval to treat autistic children for aggression and irritability. The AAP study also noted that “medication use is common among children with ASDs and seems to be increasing.” The study sample included 60,641 children under the age of 21 with an autism spectrum disorder diagnosis or an Asperger syndrome diagnosis.

Most of the children in the study were 6-11 years old (45%); most were male (78%) and white (50%); and most were eligible for Medicaid because of disability (71%).

Of these children, 56% used at least 1 medication during 2001; among those who received any medication, 20% used 3 concurrently. The most commonly used medications were neuroleptic drugs (31%), then antidepressants (25%), stimulants (22%), mood stabilizers (21%), anxiolytic drugs (12%), and sedatives (3%).

While older children were more likely to take medications than younger children, it was noted that “use was quite common” in children aged 0 to 2 years (18%) and 3 to 5 years (32%). And,

Among 0- to 2-year-olds, sedatives were most common; among 3- to 5- and 6- to 11-year-olds, both neuroleptic drugs and stimulants were most common; and in the oldest 2 age groups, neuroleptic drugs were most common.

The researchers acknowledge certain limitations to their finds, due to the children all being enrolled in Medicaid:

Use among the Medicaid population may be higher than in the general ASD population because Medicaid typically has less restrictive formulary and copayments than private insurance. Also, Medicaid-eligible children may be more severely affected than the general population of children with ASDs; that 70% of children in this study qualified for Medicaid because of their disability provides some evidence of this.

As I have noted before, my son has been taking both Risperdal (Risperidone> and Zoloft (Sertraline) for a few years, to help him with aggressive and self-injurious behavior and anxiety. We tried Ritalin for a very few days; it did increase Charlie’s ability to focus, but it also made him haunted and nervous and completely suppressed his appetite. We have tried very hard to keep the dosages as low as possible and have only used these medications in combination with educational therapies. Prior to Charlie taking Risperdal and Zoloft, we tried giving him various nutritional supplements, whose effects were temporary at best in helping him with his most difficult behaviors. I consider the medications another tool to help Charlie, and one that we have to monitor very carefully, due to Charlie’s limited language and speech.

More than a few people have raised questions about the long-term effects of these medications on children and on giving a child more than one medication. I was surprised to see how many young children—-aged 0-2—are given some type of psychotropic medication. The researchers single out the “high levels of use of many different psychotropic agents, often in combination” as a concern, especially in these being given to young children “in whom the effects of these medications on development have not been well studied.” They also note a need for more studies in the use of sedatives for young children, and about the use of psychotropic medications in combination for children with autism. I would also appreciate studies about the long-term use of these medications in children—debate on this issue will indeed be going on for more than a little while.