Experiences of parents during diagnosis and forward planning for children with Autism Spectrum Disorder.

Background For families of children diagnosed with autism spectrum disorder (ASD) getting a diagnosis is a traumatic experience on which future care and education plans for the child depend. In this paper parental experiences of diagnosis and forward planning for children with ASD are reported. Method This paper is part of a large cross-sectional study conducted in Northern Ireland and the Republic of Ireland that assessed the needs and experiences of parents of children diagnosed with ASD. Questionnaires were designed and completed by 95 parents, reporting on 100 children, as well as 67 multi-disciplinary professionals. Results Findings confirm that diagnostic and planning processes are extremely stressful for parents, that statutory diagnosis takes a long time, that care and education plans do not include full parental participation, and that reviews of plans do not consistently include intervention data. Conclusion Policy and practice implications of these findings are important for future revisions of diagnostic tools and manuals.