Magazine article Clinical Psychiatry News

Autism Services Not Reaching Some Families: Survey Uncovers Barriers to Earlier Intervention for Children with Asperger's and Minority Children

Magazine article Clinical Psychiatry News

Autism Services Not Reaching Some Families: Survey Uncovers Barriers to Earlier Intervention for Children with Asperger's and Minority Children

Article excerpt

MONTREAL -- Among children diagnosed with an autism spectrum disorder, those with Asperger's syndrome, minority children, and those whose families do not follow one of the major autism treatment approaches fall behind others when it comes to early intervention services, service intensity, and family involvement in providing treatment services, an analysis shows.

The findings highlight the need to develop family-level interventions for disseminating information, enhancing decision making, and supporting parents to assure adequate access to effective service elements for all children with an autism spectrum disorder (ASD), Kathleen Thomas, Ph.D., said at the 5th International Meeting for Autism Research.

As part of a 4-year study aimed at assessing family and child use of effective autism program elements funded by the National Institute of Mental Health, Dr. Thomas and her colleagues at the University of North Carolina at Chapel Hill recruited a sample of 383 families with a child aged 11 years or younger with an ASD diagnosis to participate in a combined telephone/in-person survey.

Sixty percent of the sample was obtained through the university's Neurodevelopmental Disorders Research Center Subject Registry; forty percent was obtained through direct recruitment from schools and developmental services agencies within the state.

The survey assessed demographics, access to services, use of services, payment for services, and overall satisfaction with services. The response rate among recruited families was 91%. The mean age of the children represented in the survey was 7 years; 71% of the children were white, and 87% were male.

Most families (58%) reported having private insurance, 21% received Medicaid alone, and 8% had both. About 70% of the children had a diagnosis of typical autism, 21% were diagnosed with Asperger's syndrome, and the rest had other diagnoses along the autism spectrum. The average age at diagnosis was 4 years.

Ninety-five percent of the families participating in the survey reported involvement with a major autism treatment approach.

"Because the participants were from North Carolina, most of the families use TEACCH [Treatment and Education of Autistic and Related Communication Handicapped Children, which was developed at the University of North Carolina and was the first statewide program for treatment and services for people with autism], although a fair number also reported using programs built on the 'applied behavior analysis' model, as well as some others," Dr. Thomas said. "Surprisingly, 5% of the families said they were not really following any formal approach."

On average, the children were receiving four service sessions per week in school and eight service sessions per week out of school, four of which the family was involved in providing. …

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