B Explanatory memorandum
by Ms Sevinj Fataliyeva, Rapporteur
1 Introduction
1. In January 2018, my colleague
Dame Cheryl Gillan (United Kingdom, EC/DA) and 45 other Assembly members
tabled a motion for a resolution on “The treatment of people with
autism and their families.”
Note Referring to research indicating
that approximately 75 million people could have autism worldwide,
the motion stresses the stigma and stark inequalities people with
autism continue to face in everyday life, in terms of access to education,
employment and public services, as well as within the justice system.
It therefore proposes the elaboration of a report recommending to
member States ways to increase support to and understanding of people
with autism and their families. The motion was referred to our committee
and I was appointed rapporteur on 28 June 2018.
2. The Secretariat distributed a survey on legislation and practice
concerning the support provided to people with autism and their
families, through the European Centre for Parliamentary Research
and Documentation (ECPRD) network in June 2019. It received 33 replies,
from the parliaments of 29 member States and from two observer parliaments.
Note The questionnaire
aimed at determining:
- the attitudes
and prejudice about people with autism, and inequalities that they
face;
- good practice examples to address these inequalities,
in particular regarding access to a diagnosis, inclusive education
adapted to their needs, employment and person-centred and life-long
support;
- possible areas of action to reinforce support for people
with autism and their families.
The questionnaire
thus included questions on legislation, prevalence and awareness,
education, and support to people with autism and their families.
The responses received have informed the corresponding chapters
in this report.
On 30 January 2020, the committee held a public hearing with
experts.Note A fact-finding visit to the United Kingdom
was originally foreseen for the end of March but had to be postponed
due to the coronavirus epidemic. It took place virtually on 10-11
September 2020 – the first virtual fact-finding visit I have ever
undertaken. I would like to extend my sincere thanks to the Secretariat
of the UK delegation for organising the visit so well in these difficult
circumstances. Particular thanks also go to Dame Cheryl Gillan and
Lord Don Touhig, Chairperson and Vice-Chairperson of the UK All
Party Parliamentary Group on Autism (APPGA), as well as to Sir Roger
Gale, Chairperson of the delegation, and all the other interlocutors
who took the time to speak to me. It was very useful to get different
perspectives on the situation in the United Kingdom: from fellow parliamentarians,
government officials (working in the ministries of education and
health), a variety of NGOs, from researchers and academics, people
with autism and their families, and professionals working with people with
autism and their families. I will be integrating the findings of
this visit into the different thematic chapters, since the United
Kingdom illustrates well which problems can remain even in a country
with a lot of good practice.
The report was considered by the committee at its meeting
on 9 October 2020, and a revised version (including the amendments
agreed to by consensus at that meeting) was then considered by the
committee at its meeting on 21 October 2020, with a view to presenting
it to the Standing Committee meeting to be held on 20 November 2020.
2 Autism: an attempt at a definition
3. In 1943, Leo Kanner, an Austrian-American
psychiatrist at Johns Hopkins University School of Medicine, described
“infantile autism” as a distinct syndrome instead of previous depictions
of such children as feeble-minded, retarded, moronic or idiotic.
Kanner classified his description of autism as independent from
the psychotic disorder, explaining how autism was not a precursor
to schizophrenia, and that the symptoms of the former appeared evident
and present at birth.
NoteNote Just one year later, paediatrician
Hans Asperger, at the University of Vienna in Austria, wrote an
article describing a group of children in his clinic who shared
many of the same features, coining the name “autistic psychopathy”
for his group of patients.
NoteNote
4. In 1979, Lorna Wing and Jacalyn Gould introduced the concept
of autism spectrum disorder (ASD) covering a range of levels and
severities, and characterised by qualitative impairments in social
interaction, communication, understanding and imagination. Today,
ASD is considered to be a complex lifelong developmental disorder
which includes symptoms such as intense focus on one item, unresponsiveness,
lack of understanding of social cues (like tone of voice or body
language), repetitive movements, or self-abusive behaviour like
head-banging.
Note Other
possible symptoms include learning to speak relatively late, not
playing interactively with other children, avoidance of eye contact,
lack of empathy, and social withdrawal, dislike of small talk and
reliance on routines and rituals, restricted range of activities
and interests, aversion to change, perfectionism, dislike of being
touched, sensory overload, and co-ordination issues. The severity
of the symptoms varies widely among affected individuals. People
with autism may be introverted or extroverted. Some of them have
an exceptional memory, and many are highly intelligent.
Note
5. For the needs of this report, the understanding of ASD will
be based on the definition of the World Health Assembly of the World
Health Organization (WHO). Accordingly, the term ASD refers to “developmental disorders
and conditions that emerge in early childhood and, in most cases,
persist throughout the lifespan and are marked by the presence of
impaired development in social interaction and communication and
a restricted repertoire of activity and interest, with or without
accompanying intellectual and language disabilities; manifestations
of the disorder vary greatly in terms of combinations and levels
of severity of symptoms.”
NoteNote At the same time, it has to be
acknowledged that different autism rights organisations in many
countries consider autism more as a natural variation of human diversity
rather than as a disease that needs to be cured.
Note
6. During my virtual fact-finding visit to the United Kingdom,
I was made more aware of the importance of language in describing
autism – in particular that the use of the term ASD is often felt
to be stigmatising, as it includes the term ‘disorder’. The Autism
Research Centre at the University of Cambridge explains well why
a distinction should be made between the terms ‘disability’, ‘difference’,
‘disease’, and ‘disorder’.
Note Autism always entails disability
(which is the reason why a diagnosis is needed) and a difference,
but these differences can involve areas of strength (for example
in attention to detail, memory for detail, and pattern-recognition
or systemising). The Autistic Research Centre thus does not seek
a cure for autism, as it sees autism as a part of a person’s genetic
make-up, part of their identity as a person, and involving a mix
of strengths and challenges. For the same reasons the Centre does
not seek to prevent or eradicate autism. However, it does promote
evidence-based interventions that target aspects of disability for
which the autistic person and their parents are seeking support.
Note
7. So how exactly does autism develop? Research suggests that
autism develops from a combination of genetic and non genetic, or
environmental, influences. The experts agree that genetic factors
predominate. The heritability of autism, however, is complex, and
it is typically unclear which genes are responsible.
Note In
rare cases, autism is strongly associated with diverse birth complications.
Many other causes have been proposed, such as childhood immunisations,
but numerous epidemiological studies have shown no scientific evidence supporting
any link between vaccinations and autism.
NoteNote Behavioural and educational interventions, particularly
those that begin in early childhood, lead to positive improvements
in children with autism with regard to behavioural problems, acquisition
of new skills and greater social integration.
Note
8. In January 2008, autism was brought widely to international
attention, when the United Nations General Assembly designated 2
April as World Autism Awareness Day.
Note On that day five years later, UN Secretary-General
Ban Ki-moon said: “This international attention is essential to
address stigma, lack of awareness and inadequate support structures.
Now is the time to work for a more inclusive society, highlight
the talents of affected people and ensure opportunities for them
to realize their potential.”
Note In May 2014, the Sixty-seventh World
Health Assembly adopted a resolution entitled “Comprehensive and
coordinated efforts for the management of autism spectrum disorders”,
which was supported by more than 60 countries. The resolution urges
the WHO to collaborate with member States and partner agencies to
strengthen national capacities to address ASD and other developmental
disorders.
Note
3 Aim
and scope of the report
9. All around the world, people
with autism clearly have difficulties in accessing their rights.
They are often discriminated against and stigmatised, including
in health and education services. For example, between 2004 and
2014, France was condemned five times by the Council of Europe for
discrimination against people with autism.
Note Almost 80% of children with autism
in France do not have access to mainstream education, a situation
which the European Committee of Social Rights has repeatedly found
to be in violation of the European Social Charter (ETS No.163) in
its decisions taken within the framework of the collective complaints’ procedure.
NoteNote
10. People with autism are frequently excluded, not only from
their communities, but also from all debates related to autism.
Generally, people with developmental disorders have inadequate access
to services and support which are theoretically destined for them.
Furthermore, their loved ones systematically carry substantial emotional,
economic and care burdens. Although the statistics talk about 75
million people with autism, we should remember that autism impacts
not only the person with the condition, but also their families, so
the number of affected people is much higher.
11. In all countries, at varying levels, people with autism and
their families have similar difficulties in accessing a diagnosis,
inclusive education adapted to their needs, employment, person-centred
and life-long support, and lack services to assist them in moments
of transition throughout their lifespan. 75 years after the first
publication regarding autism in its modern sense, we still have
not defined a common strategy within Europe. Only few European countries
have so far developed specific autism legislation and national strategies. The
lack of awareness often leads to late diagnosis and an extensive
range in treatment with mostly no evidence of efficacy. While WHO
is talking about ASD in terms of an epidemic, there is so far a
very poor or non-existing prevalence of this spectrum mainly in
low- and middle-income countries. Indeed, the statistics available
online show an important disparity in autism rates across the world.
Note It is precisely this disparity in consciousness
about autism and access to specialised services that point to the
urgent need for a cohesive European autism plan.
12. Growing awareness of autism could lead to higher acceptance,
recognition and respect towards those who are concerned. It could
also lead to changing the omnipresent strategy of showing people
with autism how to be less different from the society, to rather
teaching them more self-confidence and how to advocate for themselves.
46 member States of the Council of Europe have ratified the UN Convention
on the Rights of Persons with Disabilities (CRPD).
Note Article
4 of this 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.” Similarly, the Council
of Europe’s new Disability Strategy (2017-2023) aims at guiding
and supporting the work and activities targeted at implementing the
CRPD and carried out by the Council of Europe, its member States
and other stakeholders both at national and local levels. The strategy
is based on five priority areas: equality and non-discrimination,
awareness raising, accessibility, equal recognition before the law
and freedom from exploitation, violence and abuse.
Note Moreover, regardless of health condition,
everybody has a fundamental right to participate in society just
like everyone else. I think this should be our starting point.
13. This report will look at the attitudes and prejudice about
people with autism, and inequalities that they face. The report
will provide good practice examples to address these inequalities,
prejudices and stereotypes, searching for possible areas of action
to propose several recommendations to member States on how to better understand
people with autism and their families and to reinforce support for
them.
4 Legislation,
strategies and action plans
14. While most countries have legislation,
strategies and action plans to address the needs of persons with disabilities,
which also include persons with autism, few countries have specific
legislation concerning people with autism:
- France included
the relevant provisions of its 1996 stand-alone law into new, integrated,
legislation in 2005;Note
- Romania adopted
Law No. 151 on 12 July 2010 on health, education and social specialised
integrated services addressed to people with autism spectrum disorders
and associated mental health disorders;
- Slovenia has legislation
governing the education of children with autism;
- the United Kingdom’s
Autism Act 2009 places a legal duty on the Government in England
to publish a strategy on improving support services for adults with
autism.
15. During my virtual fact-finding visit to the United Kingdom,
everybody I spoke with seemed to agree that adopting specific legislation
(the Autism Act) in 2009 really spurred on developments and led
to more accountability, without politicising the subject. Specific
legislation does not have to be comprehensive – indeed, the Autism
Act only puts the onus on the government to develop a national autism
strategy – but it puts a spotlight on the subject and thus can get
different parts of government moving together towards the same goal in
a co-ordinated way, through a specific strategy or action plan.
16. More countries have developed specific strategies or action
plans addressing the needs of people with autism:
- Croatia has
put in place a national framework for screening and diagnostics
of ASD in children from 0 to 7 years;
- in Cyprus, the
ministries concerned have drawn up an action plan establishing a
Centre for Family Intervention and Support of Persons with Autism,
to address the needs of 300 children with autism and their families
that include, among other, psychological support services and counselling,
home schooling and educational support services as well as social
support services;
- the Czech Republic is
preparing a new strategy, following the “Initiative to solve the
situation of life of people with autism and their families”, a document
which detailed problems and suggested solutions, including in the
area of education of the public, early screening, diagnostics, therapies,
financial help assessment, education, social services, employment,
crisis situation and statistics;
- in France, the
government elaborates four-year national strategies (the current,
fourth, one runs from 2018 to 2022, with a €344 million budget);Note
- in Germany, the
State (Land) of Bavaria has
started a project to design a specific strategy;Note
- in Lithuania, there
is an action plan 2019–2020 to help children which have a diagnosis
of autism or other developmental disorders. This plan was approved
on 25 April 2018, by a joint order of three ministers – minister
of health, minister of education, science and sport, minister of
social security and labour. The purpose of the plan is to provide
high quality, systemic, complex and integrative health care, social
assistance and inclusive education for children with an autism diagnosis;Note
- in the Republic of Moldova,
by government Decision No. 234 of 24 April 2019, the State approved
the Framework Regulation on the Organisation and Functioning of
the Specialised Center for Intervention in Autism Spectrum Disorders
and the Minimum Quality Standard;
- in the Netherlands,
the Youth Health Care Directive Autism (2015)Note includes the consultative offices and
the Gemeentelijke Gezondheidsdienst (the
municipal health services) and can play an important role in the
early recognition of autism spectrum disorders; the Guidelines for
the diagnosis and treatment of ASD in children and adolescents (2009)Note are nationally applicable, and give
an optimal description of the best possible care for children and
adolescents with a (suspected) autism spectrum disorder, intended
to support caregivers in clinical decision making;
- in Romania, the
Minister of Health approved the Methodological Norms for the implementation
of the 2010 Law in August 2016. The National Programme of Mental
Health and Prophylaxis in Psychiatric Pathology includes, from June
2019, two sub programmes:
- increasing the level of skills of specialists working
with people with autism spectrum disorders and associated mental
health disorders and the quality of medical services provided to
them;
- increasing the level of skills and knowledge of parents
and families of people with autism spectrum disorders and associated
mental health disorders;
- in Slovenia, the
Ministry of Labour, Family, Social affairs and Equal Opportunities
issued a by-law according to which parents of children with autism
are entitled to child-care allowances;
- in Spain, in 2015,
the Ministry of Health, Consumption and Social Welfare issued the
Spanish Strategy on Autism Spectrum Disorders. This strategy is
the frame of reference in the definition of State, regional and
local policies and actions on people with autism spectrum disorders.
The work plans and the objectives set out in the strategy are aimed
at promoting respect for independent living, autonomy, full participation
and inclusion, equality, accessibility and non-discrimination. These
plans constitute the essential support to improve social inclusion,
quality of life and protection of the rights of people with autism
spectrum disorders. In this sense, the strategy contemplates fifteen
strategic plansNote with
defined objectives that will serve as a guide for the development
of concrete measures. For the implementation of the strategy, an
action plan will be drawn up, containing the specific measures and
actions to meet the objectives, the agents involved in its implementation,
the calendar of actions to be developed, the necessary resources
for the development of the actions and a method of evaluation by
means of indicators;
- in Switzerland,
in October 2018, the Federal Council (the Swiss Government) adopted
a strategy to help people with ASD to complete vocational training.
At its meeting on 17 October 2018, the Federal Council approved
a report that provides various measures for the strategy. The Federal
Council intends to support people with ASD to help them to play
the fullest possible role in society. It also identified three priority
areas: early detection and diagnosis, consultation and co-ordination,
and early intervention.Note In this context, a pilot test (2019-2022)
was launched for intensive early intervention for children with infantile
autism;
- in Turkey, there
is a “National Action Plan For Individuals That Have Autism Spectrum
Disorders (2016-2019)”, and there is also a “Regulation on Special
Education Services”;
- in the United Kingdom,
the first Autism strategy, Fulfilling and rewarding lives, was published
in 2010 and provided a framework for public sector services working
with adults with autism. An updated Autism strategy, Think Autism,
was published in 2014, building on the 2010 strategy; a new one
is expected to be published soon, which will include a focus on
children as well as adults with autism;
- in Israel, in 2013,
the Cabinet approved the appointment of an inter-ministerial team
to deal with the treatment of individuals with autism in Israel.
The aim of the team was to formulate recommendations on defining
and meeting the main needs of individuals with autism – and their
families – in Israel.
17. I would like to underline that the involvement of all stakeholders,
including people with autism and their families, in policy design
and implementation was seen as a strength in the United Kingdom.
People with autism and their families know best what their needs
are and can draw attention to the areas which are most in need of
improvement. This is why it is important that strategies and action
plans are revised regularly, and that the opinion of people with
autism and their families is sought also at the evaluation stage.
NoteNote
5 Prevalence,
diagnosis, awareness and understanding
18. 15 of the countries who replied
to the ECPRD questionnaire have statistics on the prevalence of
people with autism in the population: the average overall was situated
between 1 and 1.5% of the population.
19. Only a few countries were able to indicate an average age
of diagnosis. In Cyprus, France and Georgia, it is estimated at
before the child reaches the age of 3. In Norway, the average age
of diagnosis is 4,9 years, while in Croatia, it is between 5 and
7 years. In Hungary, even though there is no official information
or data, research undertaken in 2009 by the National Autism Society
shows that, despite early indication by parents, only 11% of autistic
children have been diagnosed before the age of 3 and 40% aren’t
diagnosed until after they are 5 years old. In Canada, 59% of children
are diagnosed before the age of 6, and 72% before the age of 8.
20. Many of my interlocutors in the United Kingdom stressed the
importance of early diagnosis. Unfortunately, in many countries,
the time lag between first suspicions occurring and formal diagnosis
(which, in turn, opens up access to relevant support services),
can be several years. Indeed, insufficient training of professionals
– for example, in the education and medical field – can lead to
children being misdiagnosed or expelled from school. Older adults
may find it particularly hard to get diagnosed. We took evidence
from one person with autism for whom the diagnosis (in her late
thirties) was eye-opening and explained many of the problems she
had faced. Girls may also find it particularly difficult to be diagnosed
and are often misdiagnosed with depression or anxiety.
21. Intersectional discrimination is another flashpoint. We took
evidence from one mother from a minority background who explained
that she had simply not been taken seriously by professionals when
she sought a diagnosis for her child, and was instead “talked down
to” – as if her parenting skills had been at fault, and responsible
for her child’s autistic behaviour. Negative stereotyping of single
mothers, people with a minority or migrant background, or on the
basis of gender, gender identity, sexual orientation, ethnic origin,
poverty or class, can also make it more difficult to access diagnostic
and support services. In addition, awareness and understanding of
autism can also lag in minority communities, creating a vicious
circle of families not asking nor being offered any help.
22. Most countries organise awareness-raising activities on autism,
especially on the occasion of World Autism Awareness Day. These
activities are organised by the governments themselves, organisations
and NGOs, social associations, educational institutions, universities
or health-care providers, or at professional conferences. However,
as I have already pointed out, autism is still often misunderstood
by the general public and by professionals alike. Though, for example,
polling from the National Autistic Society in the United Kingdom
in 2015 suggests that 99.5% of people have heard of autism, just
16% of autistic people and their families feel the public understands
what it means to be autistic.
NoteNote I believe the time has thus come
to move from awareness-raising to promoting real understanding by
the general public, and by professionals.
23. Most countries organise training for kindergarten and schoolteachers
to spot signs of autism in children. This training can be specialised
classes during future teachers’ education (Austria, Germany and
Hungary) or organised from time to time afterwards by other organisations
specialised in autism (Estonia, Germany, Ireland, Lithuania and
the Netherlands), and also includes guides which are available on-line
(Cyprus and France). In Ireland, teachers are encouraged and supported
by the government to attend training courses which are not mandatory.
In the Netherlands, there are continuing education projects for
teachers, in accordance with the new Inclusive Education Act (Wet Passend Onderwijs), since the
passage of which more children with autism frequent regular primary
education.
24. Training professionals who interact with autistic people (in
particular, those who interact with autistic children) is key. In
the United Kingdom, professionals who have not been adequately trained
to understand autism are one of the key concerns raised by autistic
people, as reported to me during my virtual fact-finding visit.
This should come as no surprise, since the consequences of such
misunderstanding can be misassessing – a particular concern when
it comes to access to education, health care, social services, or
benefits. Such misunderstanding by a police officer or a judge can
lead to even graver consequences, such as unwarranted arrest, pre-trial
detention or even prison time. Misassessment by medical personnel
can also lead to unwarranted sectioning and involuntary psychiatric
placement and treatment. It is relatively easy to avoid these human
rights violations by adequately training professionals, ideally
by embedding autism training in the relevant curricula of training
(for example for social workers, teachers, medical professionals,
police officers, legal professionals, etc).
25. I have received an interesting briefing note on the intersecting
issues of autism and lesbian, gay, bisexual, transgender, and intersex
experiences comprised of inputs from 10 organisations in Europe.
Note According to the submission, this
intersection bears unique challenges for LGBTI people with autism,
including social isolation, limitations in access to medical care,
and ableism in LGBTI communities. I must admit that I was unaware
that some studies indicate that there is an increased co-occurrence
of the two experiences compared to the general population.
Note I would thus agree with one of the
conclusions of the briefing note, that it is important to develop
awareness and build bridges between LGBTI and autistic communities,
in particular amongst young people, but also to raise awareness
in the general population about these facts.
6 Education
26. Almost all countries which
replied to the questionnaire indicated that people with autism are
included in mainstream schools. The decision to include people with
autism in mainstream schools can be made on a case-by-case basis
(Austria and Latvia) or can depend on the severity of the condition,
as well as on the parents’ preferences (Estonia). Furthermore, in
three countries, people with autism are generally integrated in mainstream
education, unless they have severe mental retardation (Finland,
France and the Netherlands). Most countries also have special education
programmes for people with autism. In the UK, about 70% of autistic
children are integrated into mainstream schools, while 30% go to
special education schools.
Note
27. In most countries, teachers can receive training to teach
children with autism, but they are generally not mandatory. For
example, in Austria, there is an emphasis on inclusive teaching
in kindergarten and schools, and thus also further training available
to improve teachers’ competencies and skills in dealing with autistic pupils.
Similarly, in Finland, integrated learning is promoted, so that
only severely autistic pupils, who often also have severe mental
retardation, study in special groups. In France, the new national
strategy priorities early intervention (in early childhood), better
integration of both children and adults in society, and inclusive, integrated
education. In the United Kingdom, initial basic teacher training
has included a module on autism since 2018, and a further 150 000
teachers have been trained while on the job by the voluntary sector.
28. In Ireland, early intervention ASD classes are funded, and
funding is provided for teachers to receive training in specific
interventions for students with ASD. In addition, a home tuition
scheme is funded for younger children with ASD from 2.5 – 3 years,
and for those children with ASD awaiting a place in a special class
or school if this is needed.
Note Special needs assistants
are allocated to primary, post-primary and special schools to support
students with a disability who also have significant care needs.
The National Council for Special Education produces a guide for
Supporting
Students with Autism Spectrum in Schools (for parents). It also compiles
resources
for schools related to autism for the purpose of awareness raising,
as well as compiles a
Continuing
Professional Development resources and training for teachers directly related to autism.
29. In Montenegro, inclusive education in mainstream schools is
supported by resource centres (including Early Development Centres)
which provide advice and expertise; teacher training and training
of expert assistants to work with children with special needs in
education; use of sign language; preparation, adaptation, design
and training on the use of specialised textbooks and other specialised
teaching aids. Further good practice examples regarding education
come from the Slovak Republic, Slovenia, Poland and Portugal.
30. However, delivering the inclusive and integrated education
aimed at
de facto seems to
remain a challenge in many countries. Thus, for example, even in
Israel – which is generally recognised as a good practice example
– in 2018, only about one-third of pupils with autism were integrated
into mainstream schools. In Hungary, the Commissioner for Fundamental
Rights, in his 2017 report,
Note drew attention to the need for integrative
and tailor-made kindergarten education of special needs children
and disclosed instances of negligence and practices that violate
the law in the access to education of children with special needs,
i.e. a lack of experts and the impossibility of such children to
get to the school.
Note While it is often clear
what needs to be done,
Note lack of financial and human resources,
late diagnosis, or unclear responsibilities, can hinder effective
access of autistic children to the educational services they need
and are entitled to. It often seems to require the involvement of
independent institutions such as Ombudspersons to remedy shortcomings.
31. Innovative solutions have been found by some countries, which
are increasingly turning to ICT tools to help deliver educational
or other services to people on the autism spectrum. For example,
Hungary is running the so-called
DATA project (Digital Autonomy-Support on the autistic spectrum),
targeting social integration of people with autism, until 31 December
2020, whose aim is to develop a mobile application which helps persons with
autism in their everyday life.
32. The effect of the Covid-19 pandemic on education access for
autistic children has been mixed. While in the United Kingdom, for
example, most schools stayed open for children with recognised special
needs, this was not the case for all schools (including some specialist
schools for children with autism, at least one of which never reopened).
Many autistic children also suffer from co-morbidities and thus
had to shield at home, even if their schools could have received
them. On the one hand, many autistic children find routine incredibly important,
and thus very much missed school, and became very anxious and difficult
to care for. On the other hand, some autistic children found it
easier to engage virtually rather than face-to-face. In all cases,
however, it appears that the added burden on families was enormous.
7 Employment
33. Getting (and staying in) a
job is an important milestone for all adolescents in their transition
to adulthood. While it is estimated that 20 to 30% of autistic people
would not be able to get a job on the labour market due to intellectual
and language disabilities, the labour force participation of the
other 70% to 80% is very low, as well. In France, only about 1%
of autistic persons are employed, and in the United Kingdom, on
the tenth anniversary of the National Autism Act in 2019, there
were still some 85% of autism-affected persons who could never get
a job.
Note As Mr Jones confirmed during our
hearing in January 2020, getting a full-time job was a tremendous
challenge for an autistic person (even for a university graduate
such as himself). Some would pass interviews successfully and face
refusals once on the job.
34. To fill the gap between working and not working, both autistic
persons and potential employers need specialised training, and possibly
matching up and accompanying during the first months. Another possibility is
to encourage the certification of virtuous employers. Good practices
include the example of
“Specialisterne”, which
is a social enterprise that began in Denmark and has been active
in Austria since 2011. It is specialised in preparing people from
the autism spectrum for suitable jobs, using a mixture of training,
coaching, and support measures.
Note Similarly,
Finland ran a career opportunities project for people with partial
work ability (2016-2018), and Switzerland developed a strategy in
2018 to help persons with autism complete vocational training. Hungary
has been contemplating classifying the refusal to meet the requirement
of reasonable accommodation of a disability as a form of discrimination.
35. As Lord Touhig rightly reminded me, employment opportunities
for autistic people should also be created by the State, not just
the private sector.
8 Support
to people with autism and their families
36. All countries which answered
the ECPRD questionnaire provide some kind of assistance to people
with autism and their families, ranging from financial aid and support
programmes to practical assistance (for example to find employment
or in moments of transition throughout their lifespan) and respite
care for family carers.
Note However,
such social support services have been severely stretched – sometimes
up to breaking point – during the current pandemic of Covid-19.
37. It is important to recognise the extreme burden caring for
an autistic child can put on family members, in particular mothers
(who are often the ones left “holding the baby”). When a child suffers
from a developmental problem co-occurring with autism, his or her
parents are much more likely to suffer psychological distress. Every
study measuring the health of mothers of autistic children has shown
that they suffer from very high levels of stress, distress and depression;
these levels vary from 50% to 80%, rates higher than those seen
in the parents of children suffering from conditions such as Down
syndrome or cerebral palsy.
Note For
many families, dealing with distressed behaviour by autistic children
is their top challenge.
Note
38. The burden on families can also include financial stressors:
In France, for example, most support for autistic persons is only
partially covered by the public system (with only speech therapy
fully covered), and much of the necessary support is not covered
at all. Some families with autistic children are reported to have out-of-pocket
expenditure for specialised services totaling over €3000 per month.
Note Many of our interlocutors in the
UK also stressed the need for better access to social care, as well
as earlier diagnosis and support. One often heard complaint was
that families had to “fight” for everything, also because resources
were so scarce, they were only deployed when crisis-point had been
reached.
39. Making the world more “autism-friendly” in general is also
an often-heard wish. As explained by Mr Jones during the hearing,
autism usually involves a sensory processing disorder whereby some
ordinary sounds and smells overwhelm the persons concerned. Crowds
can lead to a sense of oppression, which make it difficult for some
autistic persons to travel, to shop, or impair their ability to
work or access public services. Many places are adapted to serving
persons with physical disabilities, but hardly anything is foreseen
for those with enhanced mental needs, such as in the case of autism.
In the United Kingdom, a street-project of a “sunflower lanyard”
has been put in place to foster public awareness and assistance
to autistic persons, in order to help autistic people navigate airports,
for example.
Note
40. The global Covid-19 pandemic has hit the United Kingdom particularly
hard and has disrupted many support services for autistic people
in the country. In addition to disruption in the education sector
(see above), health-care routines have suffered, and appointments
have had to be cancelled – leading to longer waiting times for a
diagnosis, for support after a diagnosis, or for mental health needs
made acute by the crisis. Public transport is difficult to use for
autistic people at the best of times, and can be even more of an
issue during the pandemic. As the National Autistic Society has
pointed out, autistic people and their families have been heavily and
disproportionately affected by measures taken to combat the virus.
Note While the coronavirus outbreak and ensuing
lockdowns/shutdowns changed everyone’s lives and daily routines,
it has led to many autistic people and their families feeling “completely
stranded.”
Note This
is likely to be the case not just in the United Kingdom, but everywhere
the coronavirus hit this year.
9 Mental
health
41. The importance of properly
training mental health professionals in contact with autistic people
cannot be overstated. I have already mentioned the risk of misdiagnosis
of autism versus mental health conditions in a previous chapter.
Just because someone is autistic, however, does not need mean that
he or she cannot develop a mental health condition, such as depression
or anxiety – on the contrary, research suggests that up to 70-80%
of autistic people will need mental health support at one point
in their lives.
Note Indeed,
the higher rates of suicide of autistic people versus the general
public are testimony to the fact that it is often difficult for people
with autism to access mental health services on time.
NoteNote It is also
important to adapt mental health treatments to the needs of autistic
children and adults – thus, for example, “talking therapy” or group
therapy can be difficult for people with autism.
42. The Assembly has already taken a strong stand twice in recent
years against the involuntary placement and treatment in psychiatry
of people with disabilities.
Note My colleague
Reina de Bruijn-Wezeman (Netherlands, ALDE) has just started working
on a new report to promote deinstitutionalisation of persons with
disabilities.
Note In
too many countries, too many autistic people end up unnecessarily
in inpatient mental healthcare, often against their and their families’
will. The UK APPGA report (2019) describes well the dilemma autistic
people and their families face: “So, when people ask for mental
health support early on, they are too often turned away because
they are autistic. But equally when people do not require mental
health services, many are forced into them – also because they are
autistic.”
Note
43. Again, the coronavirus pandemic seems to have exacerbated
problems: The impact on people with autism living in care homes
who have been separated from their families and subject to blanket
visiting bans can be devastating, and affect both their mental health
and their emotional well-being in a particularly acute manner. The
closure of mental health hospitals to the outside world during the
pandemic also increases the risk of people’s human rights being
breached.
Note It follows that countries should
pay special attention to the mental health needs of people with
autism, in particular in pandemic times: ensuring effective and
speedy access to mental health services, and adapting mental health
treatment to autistic children and adults, while avoiding involuntary
measures in psychiatry in the first place.
10 Law-enforcement
and the justice system
44. To cite my British parliamentary
colleague Anne-Marie Trevelyan: “The vast majority of autistic people are
law abiding citizens. In spite of this, autistic people may come
into contact with the justice system for a number of reasons, as
a victim, a witness or defendant. Some autistic people may be more
vulnerable to criminal acts against them or become unwitting accomplices
to criminal activity. Whichever of these situations apply, autistic
people have a right to be understood by the justice system.”
Note
45. Interactions with law-enforcement and the justice system are
anxiety-inducing for neurotypical people, as well, but for autistic
people, they are even more so. This can lead to grave miscarriages
of justice. Unfortunately, it appears that awareness of the problem
is underdeveloped in Europe – and even countries which are aware
of the problem, such as the United Kingdom, are having difficulties
addressing it. It comes back to a basic misunderstanding of autism
– which could be rectified, it is hoped, by mandatory autism training for
law enforcement officials and legal professionals.
11 Conclusions
and recommendations
46. While working on this report,
I realised how much society in general is still influenced by stereotypes
of people with autism. Discrimination based on these stereotypes
is still very widespread, as well. Even politicians sometimes feel
challenged by the way people with autism can view and communicate
with the world, as is evident from the reaction of some politicians
to Greta Thunberg, who first became known for child activism in August
2018 when, at age 15, she began spending her school days outside
the Swedish parliament to call for stronger action on climate change.
In fact, the voices of many children with autism are not heard at
all; if at all, their parents speak for them. Even associations
of adult persons with autism seem to be few and far between.
Note In this context, it is important
that people with autism are seen as individuals with individual
needs (and, I would add, individual rights) instead of just in need
of a diagnosis, as important as a diagnosis is.
Note
47. I was also struck by the fact that the views of how well the
State is providing for persons with autism and supporting their
families varies considerably, depending on whether you ask this
question to associations of persons with autism and their families,
NGOs, governments, parliaments, or other organisations (such as international
organisations, professional organisations, etc.). Thus, for example,
in the Slovak Republic – like in most countries – organisations
of parents and the non-governmental sector have repeatedly voiced dissatisfaction
with the role and support from the State. While the legislation
currently discussed in the Slovakian parliament reflects some of
these concerns, it is felt that not all of them are being addressed.
48. The petition “For the Resolution of everyday problems of people
with autism” with more than 12 000 signatures (which was addressed
to the Prime Minister, the Ministry of Education as well as the
Ministry of Social Affairs and Family of the Slovak Republic in
June 2019) is emblematic in this respect. It included eight requests
for improvements which, I believe, could have come from every other
State, as well: concerning early diagnosis of autism; State co-ordinated
care from childhood to adulthood; better integration into the education system;
available experts on autism within the educational system; education
of parents, teachers and assistants; change of educational programs
to include the topic of autism; improvement of legal and financial conditions
for providers of social care to people with autism; improvement
of available capacities of providers of social services; improved
availability of social services for people with autism and their
families (including respite care for family carers).
NoteNote
49. While I have been in a position to highlight several examples
of good practice in this report, it has to be acknowledged that
problems – of different severity – do remain in most member States,
and these need to be recognised and addressed. I have based my recommendations
to member States on the examples of good practice, as these clearly
show that, where there is a will, there is a way to properly support
people with autism and their families. The good practice example
of the United Kingdom has convinced me that taking a “whole government”,
holistic approach, which brings together all stakeholders (including
people with autism and their families) is crucial to success.
50. I would also underline the importance of the involvement of
parliaments, which can adopt legislation as necessary – in line
with the CPRD – and allocate the necessary budgetary resources,
but can also promote the adoption by governments of appropriate
national strategies and action plans, and hold them to account when
it comes to their effective implementation – as well as, of course,
contribute to awareness-raising and even research efforts.
Note
51. One statistic which struck a particular chord with me was
that research shows that autistic people are seven times more likely
to suffer from loneliness than other people.
Note Often, they fear that if
they go out, they will be judged. This is something which we can
all influence: we do not need to wait for legislation to be adopted, or
governments to devise national strategies and action plans, to go
out ourselves and get ourselves educated to understand autism better,
and make our world more “autism-friendly”, one person at a time.
