To learn about the lives of young adults with ASD, families with children born 1974-1984, diagnosed as preschoolers and followed into adolescence were contacted by mail. Of 76 eligible, 48 (63%) participated in a telephone interview. Global outcome scores were assigned based on work, friendships and independence. At mean age 24, half had good to fair outcome and 46% poor. Co-morbid conditions, obesity and medication use were common. Families noted unmet needs particularly in social areas. Multilinear regression indicated a combination of IQ and CARS score at age 11 predicted outcome. Earlier studies reported more adults with ASD who had poor to very poor outcomes, however current young people had more opportunities, and thus better results were expected.
The Social Communication Questionnaire (SCQ) is a parent report screening measure for autism spectrum disorders (ASDs) based on the Autism Diagnostic Interview-Revised (ADI-R). To examine its validity in a young sample, the SCQ was given to parents of 151 children at a mean age of 5 years, before assessment in tertiary autism or preschool clinics. Overall sensitivity was .71, the same for both clinics, but specificity was better for the preschool clinic (.62) than for the autism clinic (.53) reflecting fewer false-positives in the former. The "hit rate" was 65% with 28% of the children with autism missed by the SCQ at a cutoff score of 15 (false-negatives) and 38% of the nonautistic misidentified as having an ASD (false-positives). Item validity analysis, contrary to what was previously published, indicated that only 15 or 46% of the items distinguished between children with and without ASD in this much younger sample. False-negatives were somewhat higher functioning. The SCQ would seem to be a useful tool for identifying young children in need of further assessment and assisting in routing them to the appropriate clinic, especially if used in conjunction with a screening by a community professional. There remain questions about the "best" cutoff score to use and whether a shorter version, based on the items that distinguished autistic from nonautistic, would be more reliable and valid with younger children. Furthermore, it may be that an adjusted score is required when parents omit items or with nonverbal children who cannot be scored on some of the items.
Forty-nine 2 years olds with social and language characteristics suggestive of autism were identified by community professionals and screening tools, then given a diagnostic assessment and reexamined at age 4 1/2. Agreement between autism clinic and screenings was high, with 88% receiving a diagnosis on the autism spectrum. The children were lower functioning relative to the autism population, thus more likely to be identified early. Reliability of diagnoses from 2 1/2 to 4 1/2 was high with 79% staying in the same diagnostic category, but more so for clear autism than for PDDNOS. About a third improved over 20 IQ points and similar number similarly declined. Changes were not related to amount or type of intervention but were related to the children's characteristics. Higher functioning children with milder autism were the most improved.
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