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Supporting people with autism and their families

Resolution 2353 (2020)

Parliamentary Assembly
Text adopted by the Standing Committee, acting on behalf of the Assembly, on 4 December 2020 (see Doc. 15177, report of the Committee on Social Affairs, Health and Sustainable Development, rapporteur: Ms Sevinj Fataliyeva).
1. Autism is a generally lifelong disability emerging in early childhood, which is estimated to affect 1% to 1.5% of the population. It also has a severe impact on the families of those affected. According to the definition of the World Health Organization, autism is marked by the presence of impaired development in social interaction and communication and a restricted repertoire of activities and interests, with or without accompanying intellectual and language disabilities. Manifestations vary greatly in terms of combinations and levels of severity of symptoms. The neurological differences can involve areas of strength, such as attention to and memory for detail, and pattern recognition or systemising.
2. Autism can be understood as a natural variation of human diversity as well as a disability. In any case, it is clear that people with autism need support – and have a right to support – in order to reach their full potential and access their rights. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) has brought about a paradigm shift: Article 4 of that convention requires that “States Parties undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability”. At European level, the CRPD has inspired the Council of Europe Disability Strategy 2017-2023, which aims at guiding and supporting the work and activities targeted at implementing the CRPD.
3. Unfortunately, people with autism still face widespread stigma, lack of awareness and inadequate support structures, more than 75 years after autism was first diagnosed. All around the world, including in Europe, people with autism clearly have difficulties in accessing their rights and often suffer from discrimination. There are numerous problems related to a lack of understanding of autism across the board, by professionals and the general public alike, including: late or incorrect diagnosis; a lack of support after diagnosis; difficulties in accessing education, social and healthcare services; difficult transitions from childhood to adulthood; barriers to obtaining and staying in employment; poor mental health and inappropriate practices (such as involuntary placement and treatment in psychiatric wards); and problems when interacting with law enforcement and the justice system.
4. People with autism are frequently excluded, not only from society, but also from all debates related to autism. Furthermore, their loved ones systematically carry substantial emotional, economic and care burdens. Autism has an impact not only on the person with the condition, but also on their families, so the number of affected people is much higher. The Parliamentary Assembly believes the time has come to make the world more “autism friendly” and to guarantee full implementation of the rights guaranteed by the CRPD to people with autism, in particular by providing the necessary support to people with autism and their families.
5. The Assembly thus recommends that Council of Europe member States, inspired by examples of good practice:
5.1 adopt specific legislation on autism, as well as national autism strategies and action plans that are in line with the CRPD, and regularly review and adjust them, and take a “whole government”, holistic approach;
5.2 involve all stakeholders in policy development, review and implementation, including people with autism and their families;
5.3 stamp out stigma, negative stereotyping and discrimination against people with autism and their families by:
5.3.1 properly training all professionals who come into contact with autistic people and their families, especially in the health, social care and education sectors – ideally by embedding a compulsory module on autism in the relevant training programmes (for social workers, teachers, medical professionals, police officers, legal professionals, etc);
5.3.2 running effective and evidence-based awareness-raising campaigns on autism for the general public;
5.3.3 paying particular attention to addressing possible intersectional discrimination based on gender, gender identity, sexual orientation, ethnic origin, a minority or migration background, poverty or class;
5.4 provide person-centred and lifelong support to people with autism and their families, with a particular emphasis on meeting the needs of children (including in their transition to adulthood) and of people diagnosed in adulthood, including through the establishment of specialist autism teams, by:
5.4.1 ensuring that diagnosis of autism in children and adults is swift and thorough, with appropriate support being offered immediately after diagnosis;
5.4.2 providing the necessary support in educational settings (including for integration into mainstream schooling, if appropriate, as well as funding for specialist teachers and facilities);
5.4.3 involving parents in the educational and social progress of their child and providing the necessary support by way of information and support groups;
5.4.4 facilitating the transition to adulthood and obtaining and staying in employment;
5.4.5 paying special attention to the mental health needs of people with autism: ensuring effective and speedy access to mental health services and adapting mental health treatment to autistic children and adults, while avoiding involuntary placement and treatment in psychiatry;
5.4.6 putting special safeguards in place for situations in which autistic people come into contact with the police and/or the justice system;
5.4.7 providing the necessary social care, including support and respite care for family carers.
6. The Assembly recognises that people with autism and their families have been heavily and disproportionately affected by measures taken to combat the current Covid-19 pandemic. It thus calls on member States to pay special attention to their needs in these circumstances.
7. The Assembly underlines the importance of the involvement of parliaments and calls on them to adopt legislation in line with the CRPD, ensure the appropriate budgetary allocation, promote the adoption by governments of appropriate national strategies and action plans, and hold them to account when it comes to effective implementation of these strategies and action plans. It furthermore encourages parliaments to contribute to awareness-raising efforts.