Autism Policies
Policies are vital to translate research findings into practical, positive changes for autistic people
National policies relating to education, healthcare and access to support services can significantly impact on the lives of autistic people and their families. Development of these policies is a vital step in ensuring that research findings translate into meaningful change. At present, there is much variation in policies between European countries. We aim to identify existing autism policies, factors that improve or hinder their implementation, and any gaps in current policy across Europe. We will consider how these might be improved and harmonised.
We will collaborate with the autism representatives and the charities Autistica and Autism Europe to identify the issues that matter most to autistic people. This will ensure we include perspectives of autistic people and their families from across Europe.
Our research studies:
Value of treatment
ACCESS-EU
10 points for change
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The value of treatment study in Europe
In this project, researchers investigated the care pathways for diagnosis and early intervention for autistic people, as well as care pathways for diagnosis of autistic children with associated epilepsy. We explored treatment gaps/unmet needs, screening and diagnosis times, funding and made policy recommendations for future care.
Data was collected throughout the UK, Spain and Italy – and you can read more about each country’s data and results in English, Spanish and Italian ( see links below).
The AIMS-2-TRIALS Autism Representatives (a group that includes autistic people and parents of autistic people) and autism charity representatives were critical to this project, and co-authored the paper. They also collaborated in preparing materials such as posters, booklets and our YouTube video describing the results.
The full booklet was created with the European Brain council ‘Early detection and continuity of care: A joint Value of Treatment study on anorexia nervosa, autism and depression in Europe’. This is available in English on the Brain Council website.
See the published papers:
Mendez, M.A., Canitano, R., Oakley, B., et al. (2023). Autism care pathway in Europe. Eur Psychiatry. 2023 Sep 11;1-29.
Mendez, M.A., Canitano, R., Oakley, B., et al. (2023). Autism with co-occurring epilepsy care pathway in Europe. European Psychiatry, 66(1):e61. Published: 20 July 2023.
ACCESS-EU
This study is exploring the service experience of autistic people across Europe. The survey was available in 8 European languages and collected data on a broad range of services including diagnostic, medical, mental health, therapy, educational, financial, employment, information/ referral, legal, needs assessment, helpline services and social care. We asked about service access, quality of services received, difficulties with accessing services, waiting times and suggestions for improvements. The survey is now closed and the project is in the data analysis phase. We will share the results here once published.
10 Points for Change
The study is exploring the policy priorities for autistic people across Europe. The survey was open to Autistic people, caregivers and those that work with autistic people. The survey is now closed and the project is in the data analysis phase. We will share the results here once published.
If you have any questions, please contact autismpolicyresearch@medschl.cam.ac.uk
Objectives
1. Map the policies that are currently in place within countries across Europe
2. Develop a 10-point action plan that aims to improve and to harmonise policies across Europe
3. Begin discussions with policy makers to develop and implement policies that support autistic people
