Supporting people with autism and their families
- Author(s):
- Parliamentary Assembly
- Origin
- 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.
