International Meeting for Autism Research (London, May 15-17, 2008): A Large Scale Study of 7,450 Parents of Children with Autism Spectrum Disorder

Friday, May 16, 2008

Champagne Terrace/Bordeaux (Novotel London West)

10:30 AM

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

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

K. Law , Medical Informatics/Interactive Autism Network, Kennedy Krieger Institute, Baltimore, MD

P. Law , Medical Informatics/Interactive Autism Network, Kennedy Krieger Institute, Baltimore, MD

Background: A number of studies have focused on family members of children diagnosed with an Autism Spectrum Disorder (ASD). Family studies provide an opportunity for researchers to explore the genetic aspects of ASD, as well as the social/psychological impact of the disorder on family members. Parents serve an important role in ASD-research both as potential research participants and as a source of reliable information.

Objectives: To present preliminary analysis of data from 7,450 parents enrolled in a national online ASD registry and research database.

Methods: In less than 10 months, 7,450 parents consented to participate in the Interactive Autism Network (IAN) registry and research database. Through a series of online questionnaires, parents provided basic data on demographics, educational background, and medical history.

Results: Of the 7,450 parents enrolled in the study, the vast majority (87.3%) are mothers. Mothers also report a higher rate of previous participation in ASD-related research projects (20% versus 12% for fathers). This preliminary report focuses on parental history of language/learning problems and mental health disorders. Key findings include: 25% of fathers and 17% of mothers report a speech/language delay, a learning disability, or having received speech therapy/special education services. 46% of mothers and 22% of fathers report having been diagnosed with or treated for depression. In addition, 26% of mothers and 13% of fathers have been diagnosed with or treated for an anxiety disorder.

Conclusions: Mothers of children with ASD are significantly more likely to enroll in ASD-related research studies, or to report a history of depression or anxiety, when compared to fathers. In contrast, fathers are more likely to report a history of speech or learning issues. Additional research on parents of children diagnosed with ASD may provide further insight into biological and sociological factors related to autism.

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