On the 25 September 2018, Autism-Europe’s conference “An EU Strategy for Autism to Leave No One Behind” highlighted key recommendations issued by the ASDEU project, following its research into autism prevalence, early detection, ageing and the social costs of autism in different EU countries and regions. The Maltese government also shared its experience in launching an autism strategy at the national level and voiced their support for an EU approach.
Held in the European Parliament in Brussels, the conference was organized by Autism-Europe and hosted by Member of the European Parliament (MEP) Nicola Caputo. The event gathered more than 40 EU and national policy-makers, persons on the autism spectrum, parents, professionals, NGOs and other interested parties from 14 different countries to hear about the research findings of the ASDEU Programme as well their implications for policies and practice.
MEP Nicola Caputo: “A EU strategy would foster a coherent and coordinated approach to tackle challenges faced by people on the autism spectrum and their families across diverse policy areas. According to its area of competences, the EU could for example support gold standards for diagnosis and intervention, as well as foster exchange of best practices.”
MEP Alfred Sant: “Conclusions of the 3-year EU funded project ASDEU demonstrates that support needs are constantly increasing (…) At this point it is very positive that governments, the education and health care sectors have all together move away from the exclusion concept into the era of a holistic society based on inclusion (…) The results of the ASDEU project, among others, highlights the need of public funding for the implementation of an autism strategy. Unifying our experiences and our possible resources is key to achieve these goals.”
Parliamentary Secretary for Persons with Disability and Active Ageing of Malta, Hon. Anthony Agius Decelis: “A more inclusive society would focus more on service provision, support and integration, and less on having to protect a group of citizens from the stares of other citizens (…) Real inclusion needs effort. It will not happen through awareness alone. And this is where I want to tie in Malta’s experience and efforts so far, with the goal of a European Autism Strategy. Just like Malta listened and acted, Europe needs to likewise listen and act.”
Pietro Cirrincione, vice-President of Autism-Europe: “What we need is Inclusion in society in every aspects of life (education, employment, leisure, sport, health, support services to live in the community, etc.) in line with the UN Convention on the Rights of People with Disabilities (UNCRPD).”
Recommendations from the results of the ASDEU programme
Prof. Manuel Posada, from The Institute of Rare Disease Research of the Instituto de Salud Carlos III in Spain, introduced the pilot project ASDEU that conducted the first and largest prevalence study on autism in Europe, and investigated a range of key issues in relation to the quality of life of autistic people (from access to early intervention to availability of support services for the elderly people on the autism spectrum). The work was carried out by a consortium comprised of 20 groups from 14 countries. He highlighted the main results and challenges in relation to the studies into prevalence of autism conducted across 23 geographical areas in 12 countries, and the related study on social and economic costs.
Based on the results, ASDEU recommends to improve the autism registration in Europe as well as to set up and define autism geographical units to improve the surveillance of the prevalence. It is also advised to further investigate the cost-effectiveness of the screening programs implemented in Europe. Finally, Posada highlighted the crucial need for effective services for people on the autism spectrum depending on their age and support needs.
Prof. Ricardo Canal from the University of Salamanca then presented the assessment of the situation in Europe regarding early detection and early intervention for autism. The research was conducted via a systematic review, focus groups and surveys of families and professionals. Regarding early detection, the research highlighted that 66.4% families experienced a delay of more than 6 months for a diagnosis. Families also reported many issues impeding access to early intervention (lack of resources, geographical disparities in services provision, lack of trained professionals).
The ensuing recommendations are threefold : – To support new initiatives to promote early detection (by involving health authorities clinicians and families in population screening programmes with procedures that include social and non-social signs, as well as potentially biomarkers); -To improve coordination of the diagnosis procedures to reduce delay and offer better support to families and – to improve access to early Intervention, to be made available for every child as soon as possible, to promote a better training of professionals and support the active participation of families.
In turn, Prof. Diana Schendel, from the Aarhus Universitet (Denmark) presented the main ASDEU recommendations for the creation of a framework to improve care for autistic adults and elders. The information search regarding policies and organization of services for autistic adults among ASDEU countries revealed that a key feature was the balance in public versus private sector involvement in services provision. This balance varied greatly both between and within ASDEU countries, although private organizations appeared to be the core knowledge base and in many cases the main providers of autistic adult services. The on-line survey was designed to obtain information on autistic adult services availability and actual experiences of service users and providers.
The survey revealed that there was a lack of alignment between recommendations and actual experience, in particular in the area of services staff training in autism, basic customer services practices, post diagnosis support and transition between adolescent to adult services. It is thus recommended to: – support activities to reduce gaps between services recommendations and actual community practices; -promote activities to reduce uneven capacities and gaps in adult services (especially healthcare, managing transitions, especially the adolescent to adult transition) and – foster training programs in autism for adult services staff, including health care.
Why a EU strategy for autism?
Within ASDEU, Autism-Europe was responsible for the Work Package on autism policies in the EU whose purpose was to issue recommendations for a public health plan on autism. AE also conducted a mapping of existing policies in relation to autism across the EU and an extensive consultation process. The UNCRPD was used as a benchmark to assess how Member States were responding to the needs of autistic people across Europe.
Autism-Europe’s Director, Aurelie Baranger, stressed the fact that public health plan for autism should follow a holistic approach, as promoting the health and well-being of autistic people at all ages requires a cross-sectoral approach, including in non-health public policy domains.
An EU strategy on autism would help to address common challenges in the European Union, and promote a better use of resources, for example by avoiding duplication in research. It would also allow autistic people and their families to enjoy their freedom of movement in the EU. Such an approach would be consistent with EU priorities and help deliver on some of its key priorities such as the implementation of the principles of the Pillar of Social Rights and the UN Convention on the Rights of People with Disabilities. It is also supported by the members of the European Parliament, with the adoption of the Written Declaration on autism in 2015. Here is various types of actions that could be supported :
- Encouraging Member States to adopt cross-sectoral national strategies or action plans to respond to the needs of autistic people, in line with the UNCRPD and international recommendations;
- Promoting the coordination between Member States of all relevant policies in the field of autism;
- Producing guidelines to harmonise practices and promote quality of support care services across Europe;
- Adopting principles of best practices and fostering exchange between Member States;
- Promoting training of professionals in autism across sectors;
- Supporting research and networks of experts and partnering for progress across the EU;
- Supporting and involving autistic people and their representative NGOs throughout the process.
Some examples of areas of actions that would benefit from cooperation were featured too, such as screening and diagnosis; post diagnosis support (EU guidelines on intervention, training of professionals); access to education (training, common standards); lifelong support (quality standards and exchange of good practices); fostering employment and independent living (structural funds); or data collection and prevalence studies.
ASDEU is a three-year pilot project funded by the Directorate-General of Health and Food Safety (DG-SANTE) aiming to increase understanding of and improve responses to the needs of people on the autism spectrum.