On Sept. 30, 2011, President Barack Obama signed the Combating Autism Reauthorization Act (CARA) into law.
The original Combating Autism Act of 2006 created a number of initiatives that are now bearing fruit. Under that piece of legislation, funding provided to the Health Resources and Services Administration (HRSA) and the Maternal and Child Health Bureau (MCHB) developed the Combating Autism Act Initiative (CAAI) to further address autism spectrum disorders and other developmental disabilities.
Under this initiative the MCHB expanded training programs in Developmental and Behavioral Pediatrics and created two Autism Intervention Research Networks—one focused on physical health interventions and one on behavioral, mental, social, and/or cognitive health interventions. These research networks were to focus on intervention research, tool validation for interventions, guideline development and information dissemination to health professionals and especially families impacted by autism spectrum disorders and other disabilities. The results of this work will soon find its way into the hands of both professionals working with children and families and to the families themselves.
These efforts will focus on a number of areas important to families dealing with autism. One important area that is being focused on (and has more typically been the domain of non-traditional practitioners) involves the many associated medical conditions often seen in children with autism including seizures, sleep problems, gastrointestinal problems, psychiatric conditions, nutritional deficiencies and metabolic conditions. Into this effort the Autism Treatment Network (ATN), an effort supported by Autism Speaks, and involving 17 treatment and research centers in North America, has taken on the task of the Autism Intervention Research Network on Physical Health (AIR-P).
The fundamental mission of the AIR-P is to initiate research that can lead to improved care for children on the autistic spectrum (ASD) and they have developed a five year plan to focus on the treatment of associated medical conditions in children with ASD.
Activities funded under this initiative have focused on several areas including an assessment of nutrition, non-pharmacological treatments to improve sleep in children with ASD, the training of professionals, and the development of tool kits for parents and professionals (that are now available online at www.autismspeaks.org) that are aimed at empowering parents and individuals with ASD.
Clinicians in the network partner with family advisory committees to develop new ideas for tool kit development. One such example is a medication decision aid called, “Should My Child Take Medicine for Challenging Behavior.” Other tool kits have focused on topics such as blood work in children with ASD, sleep, visiting the dentist and the use of visual supports to facilitate medical care. Studies have begun to focus on the use of psychotropic medication as well as complementary and alternative medicine use. Centers are evaluating issues related to quality of life in children with ASD and their families.
While much work remains to be done and funding still needs to be provided, these are indeed exciting times. I truly believe that information is power and misinformation is toxic. I vote for information.
Daniel B. Kessler, M.D., is a developmental and behavioral pediatrician and medical director of the Children’s Developmental Center at Easter Seals Southwest Human Development. His private practice, where he provides evaluation and treatment for children and adolescents, is located at Southwest Human Development.
The views he expresses in this series are based on his training, his reading of the literature and his more than 30 years of experience taking care of hundreds of kids on the autism spectrum. This is his final article in the series, which begins here.