Today the Interagency Autism Coordinating Committee (IACC) and the Office of Autism Research Coordination (OARC) released the 2011 IACC Strategic Plan for Autism Spectrum Disorder Research. The Strategic Plan provides a ‘blueprint’ for autism research as well as providing up-to-the-minute information about possible causes of autism, an overview of treatments for autism, information about where to find services, and a sense of the #1 question parents of autistic children might prefer not to think about, but have to: What does the future hold?
The IACC coordinates efforts concerning autism within the US Department of Health and Human Research. The 16 new research objectives in the Strategic Plan include some topics of particular importance to me, based on the needs and challenges my teenage autistic son Charlie lives with: use and accessibility of interventions for non-verbal people with ASD, health promotion for people with ASD, and issues related to safety for people on the spectrum. I’m hopeful that there can be a greater focus on such areas as alternative and augmentative communication, the long-term health needs of individuals on the autism spectrum from dentistry to more practitioners trained to treat autistic adults, and, yes, safety: There are too-frequent reports about autistic children and adults abused by support staff, aides, and others; whenever I read of such cases (such as the tragic death of 20-year-old Bryan Nevins after he was left in a locked minivan last summer), the first thought that comes to mind is this could have been avoided if appropriate training and supervision of staff had been in place.
Other research areas that the Strategic Plan calls for are: protocols for genetic testing; interventions to improve the functioning and quality of life for autistic individuals of all ages across the lifespan (much research so far has tended to focus on ‘early intervention’ for very young children); an improved understanding of the challenges associated with accessing community housing for autistic individuals.
The IACC regularly solicits input from ‘stakeholders’—parents of autistic children, autistic individuals, therapists, teachers, and others—about the Strategic Plan, drafts of which are made available online prior to the meetings. The IACC holds regular meetings that the public can be present at and in previous years I was able to attend some of these. These meetings (at least those I attended) ended with people—primarily autistic self-advocates and parents of autistic children—reading pre-submitted comments. And I do think the committee members take these comments very much into account; in earlier years, the Strategic Plan did not have such an extensive focus on services and the delivery of services, alternative and augmentative communication, and health and quality of life concerns for autistic individuals into adulthood.
Indeed, after hearing the testimony of one mother, Idil Abdull, about the high autism rate for Somali children in Minneapolis, the IACC notes that it ‘reacted quickly to investigate the prevalence of ASD in the Somali community in Minnesota.’ The IACC has begun to provide financial support to the Minnesota Department of Health to collect prevalence data according to the the established surveillance methods of the Centers for Disease Control and Prevention (CDC), as used by the Autism and Developmental Disabilities Monitoring (ADDM) Network.
Only two decades ago, autism was thought to be a rare disorder; it is not diagnosed 1 in every 110 children. In September of 2009, President Obama had specifically cited autism, along with cancer and heart disease, as one of three health conditions being targeted for major scientific research investment through the American Recovery and Reinvestment Act. Let’s hope the IACC’s new Strategic Plan points to real answers to the very real challenges that many individuals and those who care for them face every day.
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