International Meeting for Autism Research (London, May 15-17, 2008): Capturing Parents' Experience: Online Treatment Survey for Families of Children with Autism Spectrum Disorder (ASD)

Thursday, May 15, 2008

Champagne Terrace/Bordeaux (Novotel London West)

P. Law , Medical Informatics, Kennedy Krieger Institute, Baltimore, MD

A. R. Marvin , Medical Informatics, Kennedy Krieger Institute, Baltimore, MD

J. Nestle , Medical Informatics, Kennedy Krieger Institute, Baltimore, MD

C. Anderson , Medical Informatics, Kennedy Krieger Institute, Baltimore, MD

C. Cohen , Medical Informatics, Kennedy Krieger Institute, Baltimore, MD

C. Foster , Medical Informatics, Kennedy Krieger Institute, Baltimore, MD

K. Law , Medical Informatics, Kennedy Krieger Institute, Baltimore, MD

G. Lund , Medical Informatics, Kennedy Krieger Institute, Baltimore, MD

Background: Families of children with ASD choose from a vast array of possible interventions - with various levels of empirical support - to treat core deficits, behaviors, and related symptoms of autism.

Objectives: To determine which treatments/interventions families of children with ASD are using.

Methods: Families of children with ASD registered to participate in a web-based U.S. national research registry and database. Parents reported on current treatments by selecting from a list of 348 interventions and adding any unlisted interventions.

Results: Treatment data was reported for 4470 affected children. 66% of children were receiving speech therapy, 53% occupational therapy, and 41% ABA or ABA-based therapies. 18% attended social skill groups, 17% used PECS, 15% used Visual Schedules, 15% received physical therapy, and 13% used Social Stories. 40% of children were reported to be using at least one medication. The most commonly used medications were Risperdal/risperidone and Ritalin (and equivalents), each used by 9% of children. 17% of children were reported to be on at least one special diet, the most common being casein-/dairy-free and/or gluten-free. 30% were taking at least one dietary supplement, the most popular of which were melatonin (9% of children), probiotics (9%), vitamin B12/methyl-cobalamin (7%), multivitamins (6%), magnesium (5%), zinc (5%), and calcium(5%). Parents specifically indicated that 23% of children were receiving some form of sensory integration dysfunction therapy; however, the majority of these children were also listed as receiving occupational therapy, reflecting a natural overlap. 8% of parents engaged in prayer/spiritual practices.

Conclusions: Although many families are using autism interventions with strong empirical support (e.g. ABA, Risperdal), many are also using interventions for which such support is weak or nonexistent. The need to evaluate treatments that are in wide use despite a lack of support for their efficacy may help guide research priority setting.

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