Stakeholder meeting October 29: Study of Health Outcomes in Children with ASD and Their Families

26 Oct

The United States National Institute of Mental Health has called a meeting to discuss a study on health outcomes on children with ASD and their families. The meeting will also be a chance for community input.

I don’t see an easy way to provide input in advance of the meeting.

There are many topics I can think of for input, but a big piece of information would be to question why this is limited to children with ASD?

Meeting Announcement

Study of Health Outcomes in Children with ASD and Their Families – Stakeholders’ Meeting

October 29, 2010
NIH Neuroscience Center
6001 Executive Blvd.
Conference Room C
Rockville, MD 20852

Sponsored by:

National Institute of Mental Health (NIMH)

NIMH recently awarded a two-year contract to The Lewin Group to conduct a study of health outcomes in children with autism spectrum disorders (ASD) and their families. The objective of this study is to advance our understanding of ASD, including variables related to diagnosis, health conditions, and health care outcomes, using existing administrative data.

NIMH will host an informational stakeholders’ meeting, inviting participation from individuals with ASD, parents of children with ASD, community care providers, ASD researchers, and patient advocates. The Health Outcomes research team will provide an overview of the goals, objectives, and methods of the study. The meeting is also a venue for input from the community about the particular health issues that are of the greatest concern, as well as ASD-specific challenges or complications related to health care service provision and utilization

The meeting will be open to the public, and will be held on October 29, 2010, 2:00pm to 4:00pm EDT at the NIH Neuroscience Center. Participation by webinar is also possible. To register for in-person attendance at the meeting, or for webinar participation, please go to: http://dgimeetings.cvent.com/d/ydq5rc/4W .

It seems likely that this study will address questions such as whether there is a higher incidence of gastrointestinal problems in autistics, and how GI issues evolve with time in those kids who have it. I would expect attention on questions such as whether autistic kids are more prone to infections and/or get more antibiotics, how medicated these kids are, the incidence of epilepsy, the incidence of apraxia, and how these conditions progress with time.

I hope a good method is made for input for this meeting, other than attendance.

3 Responses to “Stakeholder meeting October 29: Study of Health Outcomes in Children with ASD and Their Families”

  1. stanley seigler October 27, 2010 at 03:50 #

    FYI Stuff

    stanley seigler

    mo stuff:
    Autism Rate May Be Leveling, Study Shows
    By Michelle Diament October 25, 2010
    After rising inexplicably for years, the rate of schoolchildren with autism may be stabilizing, new research suggests.

    In a study looking at special education classifications for elementary school students in Wisconsin from 2002 to 2008, researchers writing in the November issue of the journal Pediatrics report that autism occurrences look to be stabilizing across school districts in the state at a rate of about 1 percent.

    The latest estimate from the Centers for Disease Control and Prevention shows autism occurring at a similar rate of one out of 110 children nationally.

    Interestingly, while the number of children with autism grew in Wisconsin schools where few had the disorder to start, the rate remained largely unchanged in schools with higher prevalence at the beginning of the study. The result: by 2008, the rate of students with autism statewide became more equal across school districts.

    “The disparity in prevalence between districts decreased considerably during the study period,” researchers from the University of Wisconsin wrote in Pediatrics. “If we assume that these trends will continue, then we would expect the overall (statewide) proportion of children served under the autism category to continue to increase in the near future and perhaps to level off in the range of the highest prevalence districts today.”

    Autism is one of 11 disability categories available to Wisconsin school districts to classify special education students. Children do not need a medical diagnosis of autism to be placed in the category by their school.

    The findings could have implications beyond Wisconsin, according to Dr. John Harrington, who was not involved in the study but who wrote a commentary about the findings that also appears in Pediatrics.

    “If our population-based prevalence rates for ASD are matching our school-based rates then we can start making educated decisions for planning how to teach and transition this large group of students to adulthood and beyond,” Harrington writes.

    http://www.disabilityscoop.com/2010/10/25/autism-sped-prevalence-study/10843/
    More in Autism »

  2. vmgillen October 27, 2010 at 18:58 #

    Cute little kids are an easier “sell” than scary adults… cute little kids have parents who aren’t as burned out with battle fatigue… but, seeing the comment right above this re incidence levellig off (really?) I hope, as the parent of an adult who is “ain’t kidding very involved” autistic there will be steadily more and more attention to the adult population – goodness, just your comment alone is a good indicator of future trends.

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