Towards a common approach for autism in Europe – European Parliamentary Event

On 23rd April 2025 researchers from the AIMS-2-TRIALS Consortium presented their research findings and recommendations at the European Parliament in Brussels.

The event ‘Towards a Common Approach for Autism in Europe’ was organised by Autism Europe in partnership with AIMS-2-TRIALS researchers. Autism-Europe hosted the event in collaboration with the Disability Intergroup (an informal group of Members of the European Parliament). The aim was to promote discussions among key stakeholders on the essential steps for advancing autism policy research and services. This includes improving the quality of life for autistic individuals and advocating for more equitable access to autism services and resources throughout the European Union (EU).

Researchers from the AIMS-2-TRIALS consortium, the world’s largest research project on autism, including the University of Cambridge, King’s College London, Birkbeck University of London, Hospital Universitario Gregorio Marañón in Madrid, and an autism community representative (A-Rep), shared key findings and learnings from the project and the implications this has for required policy changes and next steps. A-Reps are a group of autistic people and parents/ carers of autistic people that are part of the AIMS-2-TRIALS consortium, working with researchers to provide community perspectives and input at different stages of the research process. More information on this group can be found elsewhere on our website.

Event attendees included Members of the European Parliament (MEPs), representatives from autism organisations, autism community members and researchers also heard from MEPs from the European Parliament Disability Intergroup. The focus was on the required action that is needed for autistic people across Europe – to address and respect the rights of autistic people and to improve service access and experiences for autistic people. The event resulted in commitments from MEPs to call for an EU-wide autism strategy and highlighted new research. The event illustrated the need for a ‘common approach’ to autism at the EU level in line with a 2024 mission letter from the president of the EU commission.

Research led by the University of Cambridge, and presented by Dr Siti Nurnadhirah Binte Mohd Ikhsan, showed that autistic people across Europe experience inconsistent access to service, long waiting times and barriers to access. In terms of priorities for change, autistic people and parents of autistic people in our Europe-wide survey prioritised education, employment, public awareness and understanding of autism, public funding for autism related services, and mental healthcare.

Professor Eva Loth, from King’s College London, outlined three key achievements from AIMS-2-TRIALS. Firstly, creation of the world largest Research Platform of linked longitudinal multi-disciplinary studies from infancy to adulthood, using cutting-edge neurotechnologies, and development of new analytic tools. Secondly, establishing a Europe-wide Clinical Trials Network (including a range of rare genetic conditions linked to autism), which will enable, for example, more efficient trials of treatments of epilepsy, rare conditions associated with autism and mental health difficulties. Thirdly and most importantly, creation of a truly collaborative, inter-disciplinary research community, that includes autistic people with lived experience. This has proven to be the key to addressing needs and priorities from autistic communities and shifting from deficit frameworks to neurodiversity-affirmative research. She also highlighted that while the EU-funding for AIMS-2-TRIALS is unprecedented, it must not remain a single large-scale investment as research funding for autism and neurodevelopmental conditions is still several magnitudes smaller than that for other mental health or medical conditions.

Professor Celso Arango, from Hospital Universitario Gregorio Marañón in Madrid, shared results from the value of treatment study on care pathways for autism and co-occurring epilepsy. Strikingly, this study found that 40-50% of participants waited around 2 years for an autism diagnosis in the UK, Spain and Italy. Their research also highlighted a lack of recognition of the common co-occurrence of epilepsy with autism and the need to screen for this to improve health outcomes for autistic people.

Mr Pierre Violland, AIMS-2-TRIALS A-Rep and Professional Peer Practitioner, discussed the diversity of autism and the need for a thoughtful and inclusive approach to better understand diversity and meet the needs of autistic people. He highlighted the need for more awareness about the co-occurrence of epilepsy with autism and recommended that actions were needed to reduce delays in diagnosis, increase support for families, and reduce the economic inequalities in accessing diagnoses and other necessary support or services.

Professor Emily Jones, from Birkbeck University of London, spoke on the need to focus future research on underrepresented groups, including those with high support needs and co-occurring mental and physical health conditions. She called for more research in early intervention to better understand how to support autistic people. She also highlighted the need for further focus on sensory differences and improvements to mental health support as areas of priority for treatment for autistic people.

The event attendees were welcomed and heard from MEPs from the European Parliament Disability Intergroup Other presenters included Harald Neerland, the President of Autism-Europe; Adam Harris from AsIAm (Ireland’s autism charity), who called for a clear and dedicated autism strategy at the EU level; and Inmaculada Placencia Porrero, Senior Expert in Disability and Inclusion at the European Commission and member of the UN CRPD Committee. The event was concluded with a Q&A and panel discussion including members of the audience.

If you would like more information about this event or the research findings presented, you can find details at the links below: