Last Week’s Top Posts

I guess it goes without saying that the rise and fall of the New York University Center’s “Ransom Notes” dominated much of the news about autism last week. Other highlights:

• BBDO
  We travel to Brooklyn, the Bowery, and elsewhere in and around lower Manhattan courtesy of the PATH train, the subway, and New Jersey Transit.
• 14-year-old girl types that she was sexually abused
  A 14-year-girl from West Bloomfield (Michigan) has accused her father of raping her repeatedly while her mother did not intervene; the girl, who is autistic, does not speak and communicated about the alleged abuse via a keyboard at school, with an aide supporting her hand.
• How Will Ransom Notes Go Down in History?
  I’ve been kind of getting the feeling that the negative response to “Ransom Notes” is being viewed positively by its creators: The public’s attention is attention, after all.
• Ransom Notes Campaign is Over
  Around 2.30pm on December 19, the Ransom Notes ad campaign becomes, indeed, history.
• 70% negative: Response to the Ransom Notes campaign
  The WSJ Health Blog interviews Dr. Harold Koplewicz, director of the NYU Child Study Center, who said that “He has received thousands of phone calls and e-mails since the ads became widely publicized, about 70% against the campaign.”
• This Is Only the Beginning
  A simple and concrete suggestion about what to do to get started on more of the “real work” after the “Ransom Notes” ad campaign: You can contact the Request for Information (RFI): Research Priorities for the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorders (ASD).
• How Do We Educate the Educators?
  How does a parent stay calm and cool at an IEP or other school meeting—-and how can a parent help a teacher feel better about having students on the spectrum in class?
• Getting the Facts Straight in Louder Than Words
  On an error in one passage that is emblematic of McCarthy’s rather haphazard use of facts and information in her account of how she “recovered” her son Evan from autism.
• Who Remembers Secretin?: Let the Parent Beware When Seeking Treatments for Autism
  Since the use of CAM and experimental medicine is “common” in “treating” autistic children, it would behoove parents to consider Dr. Coplan’s suggestions about “snake oil” and, too, to remember the secretin story, when it was widely touted as a possible “wonder treatment” for autism a few years ago.

Also this week, the National Institute of Mental Health issued a “Request for Information (RFI): Research Priorities for the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorders (ASD).” The purpose of this RFI is to “seek input from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, state and local programs for ASD, and the public at large about what they consider to be high-priority research questions”: By January 4, 2008 (that is Friday of next week), please send in your input (no more than 2 pages) to iacc@mail.nih.gov. From the RFI:

The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research. The IACC includes both Federal and public members who are active in the area of ASD research funding, services, or advocacy. In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input. This RFI is a first step in receiving broad input at the beginning stages of plan development.

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?

Please be sure to get your responses in and help make some news about autism in 2008 and beyond.