Priorities for change for autistic people across Europe.

Abstract

BACKGROUND: Despite rising rates of autism prevalence, there remains a pressing need to enhance the quality of life for autistic people in Europe and around the world. METHODS: We conducted the 10 Points for Change survey to identify the 10 most important areas that require improvement for autistic people across the region. Data from 1,709 autistic people, parents/carers and members of autism-related organisations residing within the European Union (EU) and the United Kingdom (UK) were analysed, together with autism-related differences (autistic vs. non-autistic; formal vs. no formal autism diagnosis) and gender differences (male vs. female) in results. RESULTS: Across groups, areas that require the most urgent changes are education, public awareness and understanding of autism, employment, and government funding for autism-specific services. Differences in results between groups reflect their specific needs and experiences. Discrimination is a crucial area for change according to autistic people with formal diagnosis of autism, whereas autistic people without formal diagnosis indicate diagnostic services as a priority for change. According to parents/carers and members of autism-related organisations, changes are also needed to improve social inclusion of autistic people. Other areas of priority for change across all groups include mental healthcare (within top 10 for autistic participants and parents/carers), support with daily living, and post-diagnostic services (the latter two within top 10 for parents/carers and members of autism-related organisations). For some areas, their identification and importance as priorities for change significantly varied with whether participants were autistic or formally diagnosed and autistic participants’ gender. Comparisons across countries with the greatest representation in the survey – Germany, the UK, France, Spain and Poland – revealed consistent priorities. LIMITATIONS: Consideration should be given to issues related to methodology and data availability such as how representative the sample is of countries across the EU and the UK. Autistic people with high support needs might have also been unable to participate directly and responses from carers representing them might not fully reflect their views or provide representative data. CONCLUSION: Change through concerted legislative actions within and across countries in Europe is needed to address the priority areas for change for autistic people.