The 14th Autism-Europe International Congress is approaching! Hosted by our member AsIam, Ireland’s Autism Charity, the event will happen from September 11th to 13th this year in the RDS Dublin. The theme is “Quality of Life—Research, Policy and Practice.”

The full programme of the event can be viewed here.

Autism-Europe is delighted to welcome professionals, autism researchers, advocates and practitioners. Our triannual Congress will address a range of topics particularly relevant to the autism community, such as:

• Improving physical and mental health
• Understanding ageing in autistic people
• Supporting autistic people to thrive and find meaning in life
• Vocation and employment
• Creating safe and autism friendly environments
• Accessing learning across the lifespan
• Gender and sexuality
• Embracing intersectionality and underrepresented perspectives
• Accessing housing and autonomous living
• Autism and overlapping neurodivergence
• Autistic communication and autistic interaction
• Advancing rights: from advocacy and activism to policy changes and more!  

“We are thrilled to come to Dublin in 2025 for our 14th International Congress. The Congress’s theme is fully aligned with our mission to promote understanding, acceptance, and full respect of the rights of autistic people in society to improve their quality of life. We very much look forward to a diverse and inclusive event featuring discussions on research, best practices, and personal experiences in the field of autism that will contribute to making a difference in the lives of autistic people,” says Harald Neerland, President of Autism-Europe.

The Congress will be a welcoming event for the Autism community with universal design and accessibility fully implemented in the organisation process. This approach ensures everyone feels comfortable and valued. Participants will leave with new tools and knowledge to inform everyday living, research, services and policy formulation in the future.

Adam Harris, CEO of AsIAm says, “AsIAm is honoured to be hosting the International Congress in Dublin in September 2025. As an autistic-led organisation, we are committed to a vision of an Ireland and Europe in which every Autistic person is accepted “as they are.” Our Scientific Committee embodies our commitment to partnership and co-production, bringing together a diverse range of experts from across numerous disciplines and geographical locations. For the first time, the Scientific Committee brings together many Autistic experts.

“I’m extremely honoured to be chairing the Scientific Committee for the Dublin Congress. We’re committed to shaping a congress that places collaboration and co-production at the heart of the event. Our mission is to create space for conversations that have a practical impact on the autism community. We look forward to focusing on real-world topics that impact daily life, such as education, health, employment and vocation, relationships, autonomous living and finding joy. We hope that the congress will serve as a platform for autistic people to share their research and express their experiences, needs and wishes. Equally, we hope that the congress will provide room to build future collaboration based on listening, understanding and shared respect,” says Dr Cat Hughes, Chair of the Scientific Committee

All details and the link to register can be found here.

If you would like to sponsor the event, please go to: autismcongress2025.org/opportunities-to-support

In late May, the EMPOWER project consortium, which includes Autism-Europe, gathered in Brussels for the final partner meeting before the big rollout of its main output – a learning platform for children with neurological developmental conditions – in September.

The EMPOWER project explores how technology-augmented education can support the development of neurodivergent children, especially via the use of computer games. These games are designed to help neurodivergent children make decisions more easily, better regulate their emotions, and reduce their anxiety, all of which should improve their academic performance and, more importantly, their general wellbeing. The interdisciplinary research project is led by the University of Valencia (Spain).

The meeting in Brussels spanned two days, during which partners shared their work progress and discussed the way forward, particularly once the EU-funded period of the project ends this October.

The project consortium includes members of nine different organizations or institutions, all of whom presented the work accomplished since the last meeting, which was held in Lisbon in October 2024. All partners reported being on track to meet all deadlines of the project, both for the public launch of the learning platform and the delivery of mandatory reports to the funding agency.

A representative from ISCTE-IUL (Lisbon) reported on the progress of two randomized controlled trials held in the past few months, one in Portugal, one in Romania. The trials are still ongoing, but results will be available soon. Teachers so far are very enthusiastic about using the EMPOWER platform with their neurodivergent students, according to the team members who are conducting the trials. The tool seems to meet a real need, as the number of interested teachers exceeded the available trial slots.

Other consortium members presented information related to the machine-learning components of the platform, with regards to both improvements that had been made in its performance and student privacy issues that had been addressed or improved. The machine-learning function is used to suggest the appropriate level of the game to a student based on their previous performance in the game.

Also discussed were the questionnaires for upcoming focus group interviews, the performance of the eye-tracking feature of the platform, and the input of the ethics committee attached to the project.

One topic was raised repeatedly throughout the two days: how to sustain the platform once public funding for the project ends. All partners agreed that every effort needs to be made to keep the platform available and updated, and to continue to train teachers on its use. The feedback from schools and preliminary results by the project’s academics show that the tool can truly help neurodivergent students.

Several ideas were floated on how to achieve sustainability – the main concern being that the platform needs to stay accessible to all regardless of family income or school budgets.

The tools created by the EMPOWER project are scheduled to be available in September. They will be presented, among other places, at the 14th Autism-Europe International Congress, which will be held in Dublin on 11-13 September 2025.

The consortium thanks all representatives for this productive meeting and looks forward to seeing many of the partners at the congress in Dublin.

Autism-Europe held its Annual General Assembly (AGA) and Council of Administration (CA) on 10-11 May 2025 in Cagliari, Italy. The event was hosted by local member Diversamente ODV. 

Highlights of the two meetings included the admission of new members to Autism-Europe and the selection of the host city of the International Congress 2028. 

Many AE members arrived the day before the meetings to visit the Casa Saddi, a cultural centre housed in an historic building in the Pirri neighbourhood. There, members were treated to a theatre performance with an inclusive cast featuring autistic actors. The performance was a preview of a larger show organized under the SDIT project – “Self-Determination and Inclusion by Theatre”, in which Diversamente ODV and Autism-Europe are partners.  

Looking back, planning ahead

On Saturday (10 May), the AGA  adopted AE’s 2025 work programme and budget, as well as the report of activities from 2024. Aurelie Baranger, AE’s director, also presented updates on all the EU-funded projects AE currently is involved in. 

AE staff gave a training session on advocating for the autism community at EU level. The training focused on the recent concluding observations of the UN CRPD committee and how they can be leveraged for further actions. Members also received an update on AE’s ‘Not invisible’ campaign and website and how to get involved. 

In the afternoon, AE members discussed the organisation’s strategy for the coming years and how to make it easier for new members to find their footing within the group when they first join. They also heard a presentation from Sportelli Autismo Italia on how to better include autistic students and an update by Irish member AsIAm on this year’s International Congress, which will be held in Dublin on 11-13 September. 

New members

In between these presentations, the AGA welcomed new members: Inovar Autismo (Portugal) as an affiliated member and Liberty Academy Trust (United Kingdom) as an associated member. (See the updated list of AE’s members here.) 

The day closed with a networking session between members, during which they exchanged their work plans, key issues and proudest achievements. 

APNABI selected to host 2028 congress in Bilbao

On Sunday (11 May), during the CA, members discussed how to appoint advisors to the organisation’s scientific ethics committee. But the main event of the day were the presentations by candidate cities to host AE’s International Congress in 2028. Teams from Sofia (Bulgaria), Copenhagen (Denmark), and Bilbao (Spain) each made their case and highlighted their plans for the event, using visuals and data to show off their location’s beauty and accessibility. 

Considering the high quality of the three applications, members faced a difficult decision. In the end, they chose Bilbao in a secret ballot to host the expected 2,000-3,000 visitors to the International Congress in 2028. 

AE wants to warmly thank our members for participating in the meetings in person and online, and for their continuous efforts working for the rights of autistic people across Europe. 

In a remarkable event held at the European Parliament, hosted by MEP Chiara Gemma, the Sacree project celebrated its achievements in promoting inclusion through sports for autistic people. The atmosphere was filled with enthusiasm as project partners, invited experts, and key stakeholders assembled to highlight the project’s impact and discuss the importance of accessibility in sports.

Sacree’s research has brought to light a significant point: over 75% of autistic people report limited access to sports due to a lack of accommodation or welcoming organisations. This reality stresses the urgent need for initiatives like Sacree, which has developed a person-centred model to ensure everyone can participate and thrive in the world of sports.

The event showcased the project’s scientific research and its encouraging results. Partners shared compelling evidence of the positive impact of sports on autistic individuals, demonstrating their ability to foster acceptance and community inclusion by dismantling discrimination and misunderstandings. The project’s journey since June 2022 has been instrumental in addressing the previously limited research in the intersection of sports and autism, marking a significant contribution to the field.

Key figures in the world of sports, including Christo Velkov from Special Olympics, autistic trainer Jean Philippe Piat, and Paralympic swimming champion Marc Evers, shared their insights and experiences. They emphasised that Sacree’s results offer a powerful framework for fostering inclusion in sports, highlighting the transformative potential of this project. The discussions and concluding remarks by Autism-Europe and MEP Chiara Gemma reinforced the importance of sustained efforts to create a more inclusive sporting landscape for all.

Discover the main tools developed by Sacree:

• A one-hour e-learning course to raise awareness of autism in the sports sector: Sacree E-learning
• A guide to help the sports sector welcome autistic people: Guide for the Sport Sector
• A guide to help autistic people choose a sport: Guide for Autistic People.
• A Model Sports Programme. 

Visit Sacree’s website for more information.

On the 30th of April 2025 Autism-Europe submitted a report to the United Nations Special Rapporteur on the rights of persons with disabilities, responding to the call for input on: “Care and support for children with disabilities within the family environment and its gendered dimensions.” This submission sheds light on the significant challenges faced by families supporting autistic children and adults across Europe, highlighting the disproportionate and often overlooked burden placed on mothers and other informal caregivers.

The report combines data from a survey conducted by Autism-Europe among our members and with analysis of the recent ‘National long-term care’ reports submitted by EU Member States under the 2022 Council Recommendation on affordable, high-quality long-term care. It is framed within the international human rights obligations set out in the CRPD, CRC, and CEDAW, offering a comprehensive picture of both lived experience and systemic gaps in care provision.

A clear gender imbalance in care

Of the 159 respondents who responded to the survey as an informal carer, an overwhelming 83% were women. Mothers were most often identified as the primary caregivers, with only a small minority of families reporting shared or father-led caregiving responsibilities. This stark gender disparity reinforces the findings of other European reports and reveals how entrenched gender roles continue to shape care responsibilities, often at the expense of women’s economic security and mental health.

Over 85% of families reported that caregiving negatively impacted household income. Many mothers were forced to reduce working hours, accept lower-paid roles, or leave the workforce entirely. These adjustments came with long-term consequences for pension rights, career development, and family stability.

Emotional strain and lack of support

Caregivers also reported serious effects on their emotional and physical well-being. More than 70% said caregiving had taken a toll on their health, with many describing feelings of isolation, chronic stress, and exhaustion. Several caregivers shared personal reflections illustrating the emotional burden of 24-hour care without adequate support or respite. Despite this, mental health support for caregivers was reported to be scarce or inaccessible.

Families caring for their autistic loved ones described a persistent sense of invisibility within both society and the broader disability community, especially those caring for those with high support needs. Many noted that societal stigma continues to reinforce exclusion and deepen the pressure faced by caregivers.

Barriers to services across lifespan

The report reveals major gaps in access to care and support services. While some early intervention and therapy programs exist, families consistently highlighted long waiting times, bureaucratic hurdles, and regional disparities. This lack of timely, affordable, and appropriate support places additional stress on caregivers during the most critical periods of their child’s development.

These challenges become even more acute as autistic young people transition to adulthood. Families reported that services often end or decline sharply after age eighteen, despite ongoing and sometimes increasing support needs. In many cases, outdated institutional models still dominate, leaving families to shoulder the full burden of care.

Policy gaps and lack of inclusion

Only a minority of families reported receiving meaningful financial support. Application processes for caregiver allowances or disability benefits were frequently described as complex, burdensome, and inconsistent. The report also highlights the limited involvement of caregivers and autistic people in policy design and evaluation processes. Few respondents had been consulted or invited to share feedback on services, and data collection efforts on informal care were seen as insufficient and poorly disaggregated by gender or disability.

Recommendations within the report

Autism-Europe calls for urgent action to address these challenges through concrete, rights-based reforms. The following key recommendations were presented to the Special Rapporteur:

• States must develop and implement comprehensive support services and rights-based policies tailored to the needs of informal carers, ensuring that caregiving responsibilities do not come at the expense of financial security, well-being, or gender equality.
• Legislative reforms are needed to enhance the right to care leave and extend social protection schemes. These should include direct financial assistance, respite care, and flexible employment options to support carers in remaining economically and socially active.
• Autistic people and their families must be genuinely involved in the design, monitoring, and evaluation of care policies and services. Their lived experience is a critical resource that should inform public decision-making at all levels.
• States should invest in long-term, person-centred care systems that begin with equitable access to early intervention and continue through adulthood, with particular attention to the needs of those requiring high levels of support.
• National data collection must be strengthened and disaggregated by disability status, gender, and age to ensure that care policies are evidence-based and address the real needs of families.
• Governments must take a gender-sensitive approach to care policy, recognising the disproportionate impact on women and promoting the redistribution of unpaid care work.

We extend our heartfelt thanks to all our members who participated in the survey and made this report possible. Your contributions have been essential in ensuring that the voices of caregivers within the autism community are heard at the international level.

Link to the call for inputs by the Special Rapporteur is available here.

The full submission is available here.

Autism-Europe remains committed to advocating for a more inclusive and supportive Europe, where the rights and dignity of autistic people and their families are fully upheld.

Photo by Sandra Seitamaa on Unsplash

A high-level conference on autism, held at the European Parliament on 23 April 2025, produced commitments from multiple members of the parliament to push for an EU-wide autism strategy, and revealed new research results from the world’s largest research project on autism.

The conference, titled “Towards a common approach for autism in Europe”, was organized by Autism-Europe in partnership with the AIMS-2-TRIALS project, and hosted under the auspices of the Disability Intergroup of the European Parliament.

AIMS-2-TRIALS includes 48 partners across 14 countries from academia, industry, charities and the autistic community. Among other achievements, the project has established the largest research platform of longitudinal studies on autism from infancy to adulthood.

The goal of the conference was to initiate dialogue between researchers, representatives of the autism community, and policymakers on the next steps for investment in research, support and infrastructure related to autism. It rests in part on the commitment of the European Commission to work towards a common approach to autism at the EU level, as expressed in a mission letter from European Commission President Ursula von der Leyen to Commissioner for Health, Olivér Várhely, in September 2024.

The commissioner appeared in a video address to welcome the attendees. He endorsed the conference’s goals. “Autism requires comprehensive and enduring approaches,” Várhely said in the video. “We are dedicated to improving [autistic people’s] and their families’ lives in the European Union. Everyone should be included no matter where they live, no matter their condition or disability.”

• Watch the recording here: https://youtu.be/5k0UAzaYyQQ

A European strategy on autism

Autism-Europe has long demanded a strategic and holistic approach – developed in full cooperation with the autism community – at the European level to realise the rights of autistic people.

The three members of the European Parliament seated at the podium honoured that demand:  MEP Rosa Estaras (EPP), a Spanish bureau member of the Disability Intergroup, concluded her opening remarks with an announcement. “In the next days, I will propose the creation of a European strategy on autism, with the aim of ensuring that people with autism have access to the same opportunities and rights in European countries, promoting their inclusion and full participation in society,” she said.

MEP Alex Agius Saliba (S&D), Maltese co-chair of the Disability Intergroup, called for “establishing a binding European autism strategy aligned with the CRPD.” This refers to the United Nations Committee on the Rights of Persons with Disabilities. The CRPD Committee issued recommendations earlier this year calling on the EU to adopt concrete actions to address the needs of autistic individuals in the second phase of the European Strategy for the Rights of Persons with Disabilities, among other findings.

MEP Katrin Langensiepen (Greens/EFA), German co-chair of the Disability Intergroup, affirmed that she and her colleagues will push for such actions. “We are working on the disability strategy,” Langensiepen said, with a nod to her colleagues on the podium. “We will push the [European] Commission for something concrete and not only for guidelines.”

New research results

Harald Neerland, president of Autism-Europe, spoke of the achievements of the AIMS-2-TRIALS project, focusing on the improved involvement of the autism community in research. It paves the way for systematic “ethical, reciprocal partnership”, and priorities of autistic people should shape the research agenda, he said.

Prof. Eva Loth, who researches cognitive neuroscience at King’s College London and is a deputy lead of AIMS-2-TRIALS, reminded the audience that autism is tremendously variable, in part because many autistic people have co-occurring mental-health or physical conditions. Healthcare, social and educational systems must be able to support this wide range of conditions. That is the overarching idea behind AIMS-2-TRIALS: to better tailor treatments and/or support to individual needs and profiles.

The project created the largest research platform of longitudinal studies from infancy to adulthood, Loth said. The researchers characterize each volunteer’s clinical features, cognitive profiles, brain anatomy and function, immune markers, family psychiatric history, environmental factors, and genomics, she said.

Among their findings:

• There is “enormous overlap” between autism and other neurodevelopmental conditions, both at a clinical and a biological level. This means that people should be assessed for multiple conditions at once, rather than testing only for autism, for example.
• There is no single part of the brain or a cognitive feature or genetic marker that characterizes all autistic people. This means researchers must move away from searching for deficits in specific parts of a person, Loth said, and move to a more holistic approach that tracks how the brain, the body and the social environment interact.

Loth thanked the European Union for funding the project to the tune of €60 million over the past 12 years, which is unprecedented in the history of autism research in Europe. However, she pointed out, the Commission spent about €900 million on heart-disease research and €4 billion on cancer research in the same period. The EU funds spent on autism research should not be a single investment, Loth said. “We must now build on the European infrastructure and expertise we created.”

Dr Siti Ikhsan, a researcher from the Autism Research Centre, University of Cambridge, and Pierre Violland, a professional peer practitioner and autism representative, presented the results of the ‘ACCESS-EU’ survey, which asked more than 2,000 autistic participants in the EU and the UK about their access to various services. One finding: most participants waited for up to six months for most services including therapy, educational services and housing-related services, less than one month for emergency medical services and mental health crisis services, and more than 12 months for autism diagnostic services. These and other findings showed the urgent need for policy changes to improve access to such services across Europe, Ikhsan said.

The two researchers also shared the results of the ‘10 Points for Change’ study. The areas autistic people and parents/carers of autistic people most wanted to change were education, employment, public awareness and understanding of autism, government funding for autism-specific services and mental healthcare.

Prof. Celso Arango, head of the child and adolescent psychiatry service at Hospital General Universitario Gregorio Marañón in Madrid, Spain, along with Violland, presented results from a study on access to services to diagnose autism and epilepsy. The results varied greatly between EU member states. Autistic people in Spain and in the UK had to wait much longer for such services than people in Italy, for example. Other factors, such as whether a paediatrician or a neurologist were involved in a child’s autism screening, also differed from country to country. In Italy, 100% of autistic children with epilepsy received anti-epileptic drugs, but only one-third of such children in the UK did.

Violland said more awareness of the co-occurrence of epilepsy and autism was urgently needed both among medical practitioners and in families. He also stressed the need for more equal access to diagnostic and other services for lower-income families. Existing inequalities may result in delayed diagnoses of autism in children, which can have negative effects.

Prof. Emily Jones, from the University of London, also underlined the importance of early detection, and explained that the project research points to sensory and sleep differences in infancy as early indicators of autism. She also highlighted the urgency of more research on helping autistic people with high support needs, a population often underrepresented in research, with a higher-than-average mortality rate.

Feedback from activists

This last point was echoed by audience members during a Q&A session. Salima Slimani, a Belgian advocate for the rights of autistic people and their families, delivered a passionate plea for more consideration in policymaking for the families of autistic people with high support needs. She spoke of the high levels of discrimination her autistic family member has experienced. Her family did not have full freedom of movement due to lack of services across Europe and because her family member’s autism diagnosis was not recognized in all member states, she said. She called on policymakers to find a “common ground” in Europe.

Adam Harris, the CEO of AsIAm, the largest autism organisation in Ireland, reminded policymakers of the importance of implementing existing policies and strategies, and asked them to focus on rights-based strategies. Autistic people need a clear and dedicated autism strategy, he said, not one mixed with other policies on cancer and other health topics.

Inmaculada Placencia Porrero, senior expert in disability and inclusion at Directorate-General for Justice and Consumers of the European Commission, closed the conference by summarizing that there is inconsistency in the access of services across Europe. She also urged audience members to contact their national parliamentarians and to respond to public consultations by the commission.

Brussels, April 2, 2025 – As we mark World Autism Awareness Day, Autism-Europe is pleased to announce that the United Nations Committee on the Rights of Persons with Disabilities (CRPD) recently issued concluding observations that match our demands to realise the rights of autistic people in the European Union. This is in line with the alternative report we submitted to the UN earlier this year, and can be seen as a strong endorsement of Autism-Europe’s call for the voices of autistic people and their families to be heard and acted upon – the goal of our ‘Not invisible’ campaign.

The CRPD Committee has highlighted the recent European Parliament Resolution on Harmonising the Rights of Autistic Persons, adopted in 2023, and calls on the EU to:

• Adopt new concrete actions to address the needs of autistic individuals in the second phase of the European Strategy for the Rights of Persons with Disabilities;
• Improve access to disability assessment for autistic people;
• Combat poverty and social exclusion experienced by autistic people;
• Promote compulsory training of professionals on autism and fostering quality support services, notably to enable autistic people to live independently; 
• Enhance access to employment, including for people with intensive support needs;
• Abolish forced treatment for autistic people, such as in psychiatric hospitals;
• Abolish guardianship and promote legal capacity through supported decision-making;
• Address structural inequalities and intersectional discrimination experienced by autistic people.

These concluding observations are the result of a crucial process conducted by the UN to assess how the EU is implementing the UN Convention on the Rights of Persons with Disabilities. It is a review of the positive and the negative aspects of the EU’s commitment to disability rights. These recommendations tell the EU exactly where and how they need to improve and take further action.

Autism-Europe remains committed to advocating for these essential changes and will continue to work closely with the European Union and all relevant stakeholders to promote their implementation.

Read the full recommendations here. 

Read the AE analysis of the CRPD conclusions on the EU’s progress on UN CRPD implementation in 2025.