A survey of parents' reactions to the diagnosis of an autistic spectrum disorder by a local service: Access to information and use of services

We conducted a postal survey of parents whose child had been diagnosed with an autistic spectrum disorder by a district diagnostic service. The service was regarded as having improved significantly following recent changes, but there were still shortcomings. Parents had obtained useful information from a range of other sources, including a parents' support group, school teachers, speech and language therapists, educational psychologists, the Internet, books and academic journals. Special units and schools were rated as the most useful source of support and treatment, but many other interventions were rated highly. Parents reported a diverse range of both negative and positive consequences of diagnosis, and many reported a change in their attitudes to diagnosis over time. Many expressed frustration with trying to get an early diagnosis, with the social, educational and health services, and with the way that autistic spectrum disorders are regarded by laypeople and other parents. © 2004 SAGE Publications and The National Autistic Society.