On the occasion of World Autism Awareness Day, celebrated on April 2, RTV Slovenija spoke with Harald Neerland , President of Autism-Europe . Neerland is a Norwegian with more than twenty years of experience advocating for people with autism in Norway and Europe. He has been involved in Autism-Europe since 2008 as a member of the Executive Board for the last 8 years. As former President of the Norwegian Autism Association, Neerland was a member of several committees in the Ministry of Health and Care at the Norwegian Directorate of Health and Social Services.
RTV: Autism-Europe will celebrate its fortieth anniversary next year. How did the perception of people with autism changed in those 40 years and what stayed the same and has yet to be addressed or changed in the forthcoming years?
HN: We have come a long way since 1983; the broader community is becoming more aware of autism and people with disabilities have gained better recognition of their rights, notably since the adoption of the United Nations Convention on the Rights of Persons with Disabilities drafted with participation from Autism-Europe in 2007.
When it comes to autism, there is more awareness in society that autism is a spectrum with people having different kind of support needs. There is also growing awareness that autism also affects girls and women who tend to be under-diagnosed, because they tend to be better at »masking« their condition.
However, in every day life, autistic people are still experiencing a lack of understanding of how their access and support needs can be accommodated so that they can be fully included.
RTV: Which would be the most notable achievements since Autism-Europe began its activities?
HN: Autism-Europe has made some milestone achievements for people on the autism spectrum and their families during the past 40 years:
– Charter of rights for persons with autism adopted as a written declaration by the European Parliament (1996);
– Landmark decision of the Council of Europe (Autism-Europe v. France, complaint No. 13/2002) whereby France was condemned to have failed its educational obligations to persons with autism under the revised European Social Charter (decision announced in 2004);
– Council of Europe Recommendation CM/Rec(2009)9 to member states on the education and social inclusion of children and young people with autism spectrum disorders, drafted with expertise from Autism-Europe;
– United Nations Convention on the Rights of Persons with Disabilities drafted with participation from Autism-Europe (2007);
– Adoption of the European Parliament Written Declaration for a European strategy for autism (2015) and adoption of various autism strategies accross Europe
– Increased awareness of autism throughout Europe (since 1983).
RTV: One of the most important things for people with disabilities is getting and having a job: what are the plans to enhance employability of autistic people and how can this be changed on a systemic level of EU-member states, for example?
HN: Indeed, the employment rate of autistic people is still very low. There is no official data available disaggregated by impairment types regarding employment rates, but a survey conducted in the United Kingdom by the National Autistic Society indicates that 16% of autistic people are in full-time work (no change since 2007) and 16% in part-time work. It is estimated that across the European Union less than 10% people on the autism spectrum are employed, mostly in low-paid jobs or in sheltered settings. Most autistic people with high support needs are neither in education nor in employment nor in training (NEETs) nor counted in statistics as they live in institutions or in unsupported families. Unemployment also affects disproportionally autistic people with above-average level of general education as evidenced by research. However, lack of access to all levels of education and vocational training constitutes a major barrier to accessing employment. It is compounded by prejudices among employers and a lack of accessibility and support to access the world of work and stay employed.
The European Parliament has recently debated about the issue of employment of autistic people as they are one of the most discriminated group. Autism-Europe calls on decision-makers to promote access to employment for autistic people in cooperation with their representative organisations. We need more data accross Europe about the employment rates of autistic poeple, and we need member states to monitor the number of autistic people in employment and to set targets to improve their employment.
Autism-Europe recommends to develop autism employment pathways in a variety of fields, with end-to-end specialist support whenever needed, and to monitor outcomes for autistic people. Therefore we need funding for more research and social investment in initiatives supporting the employment of autistic people. It is also necessary to raise awareness of the potential of autistic people, notably by launching campaigns addressed to employers. There should be also more awareness that autistic people can perform in a wide range of domains, not only ICT. Public administration should lead by example and increase work experience schemes for autistic adults.
In order to increase their employability it is critical for employers to have better understanding about what they may need in terms of reasonable accommodation and how companies can adapt their management practices to be more inclusive. Member states should also adress the the issue of the so-called ‘benefits trap’, as some people on the autism spectrum cannot access proper employment without losing all their vital benefits.
RTV: Easy-to-read plays an important part of engagement of autistic people with the world, although it is less known that also autistic people benefit from easy-to-read. How do autistic people get excluded when having only “standard” language texts as opposed to the easy-to-read variant?
HN: Not all autistic people have difficulties with reading comprehension, but indeed some autistic people can benefit from accessible format, such as easy-to-read documents that are accompanied by pictograms to visualise the topic that is addressed. It is part of the tool to foster accessibility of communication. We therefore recommend following the guidelines developed by Inclusion Europe in that regard.
RTV: We cannot go past the Russian agression in Ukraine and the impact war has on autistic people. What are the difficulties autistic people are struggling with during war and while escaping war-torn Ukrainian cities? Do you have any reports what are they experiencing during these last weeks?
HN: Yes, unfortunately, At least 1% of the population is on the autism spectrum, therefore we can estimate that over 440.000 Ukrainians are autistic. Yet we know that they face a chronic lack of support that is exacerbated in the current context.
Autistic people and their families are particularly vulnerable during armed conflicts. Most autistic people generally need routine, familiarity, and a high level of predictability. Many of them are exceptionally sensitive to noise and other sensory stimuli. Stressful conditions and severe sensory overload can therefore trigger intense distress. They can also display unusual behaviours that might be misinterpreted and put them at risk. Many autistic people have co-occurring medical conditions, such as epilepsy, sleep disorders or gastro-intestinal problems.
Our partners in Ukraine have alerted us about the alarming situation currently faced by autistic people and their families. Families with autistic members have experienced more difficulties to leave the country and many have remained in Ukraine without any support. Autistic people and their families appear to be overlooked in some cases by humanitarian aid agencies, as the nature or extent of the disability is not fully understood. This can leave vulnerable individuals and families without access to official channels of support. Ukrainian autistic adults without intellectual disabilities are generally undiagnosed in Ukraine and many neighboring countries and do not have access to any official support services or social protection. The war renders their situation even more challenging. Autistic people with intellectual disabilities living in institutions or orphanages are cut off from their families, and are particularly vulnerable. For autistic refugees and their families it is also particularly challenging to access support, when many services in Europe are already saturated. We have seen a lot of solidarity from autism organisations and individuals across Europe. However, we need a coordinated approach supported by public authorities to support autistic people in this crisis situation.
RTV: On the other hand, the research shows that one in three children & adolescents with disabilities globally have experienced violence in their lifetimes, and they are twice as likely to experience any form of violence than children without disabilities. What are the efforts put into ending violence for autistic people, especially women?
Indeed, Autism-Europe seeks to raise awareness of issues related to abuse, as well as to provide guidelines on how to offer support and protection against violence. We also advocate for the ratification of the Istanbul Convention against violence against women.
Autistic have difficulties with communication and social interaction, meaning that their ability to recognise or report potential signs of abuse can be affected to varying degrees. It contributes to make autistic people easier targets for abuse and mistreatment. Sometimes autistic people can also become the target of hate crimes.
A general tendency of over-compliance is another factor that can increase the chances an autistic person suffering abuse at some point in their life. We teach children from an early age to comply with parents and other adults, but there are a number of ‘grey areas’ within these rules that can be confusing for some autistic people to navigate.
In some cases a lack of knowledge about autism can also mean that autistic people suffer abuses, even when the intention to abuse is not present. For example, autistic people can find themselves victims of unethical and non-evidence based “cures”, therapies and interventions from untrained professionals, and even family members, albeit with often good intentions. These therapies are ineffective, and sometimes even very dangerous for the person with autism. They also deprive autistic people from receiving adequate support that would allow them to develop their potential. So Autism-Europe is very much active to support access to evidence-based information and right-based interventions.
RTV: Positive developments are taking place in Europe to transition from institutions to community-based care, but what are the goals for autistic people that would need to be reached?
HN: In Europe, there is a lack of adapted services to support them in the community as segregation (in institutions or psychiatric hospital) remains an issue. Regardless of their support needs, all autistic people have the right to live as independently as possible and to be included in the community under the United Nations Convention on the Rights of Persons with Disabilities. Receiving appropriate support is essential to enable people with autism to live independent and fulfilling lives, and be included in the community.
By contrast, a lack of support often leads autistic people to live in isolation and/or heavily dependent upon their families. In some parts of Europe, many people on the autism spectrum are often forced to live in large residential institutions in which they are prevented from going outdoors or even leaving their beds, denied their fundamental rights and neglected and/or abused.
Autism-Europe advocates for deinstitutionalisation and the right to housing and living support appropriate to their individual needs, as well as the right of people with autism to choose their own living circumstances.
We are members of the European Expert Group on the transition from institutional to community-based support (EEG) and defend the right to housing and living support that is adapted and appropriate to their needs – according to the UNCRPD.
RTV: This year’s motto of World Autism Awareness Day is “A happy journey through life”. What are the events and plans surrounding this and what needs to change to promote happy and fulfilling lives for autistic people and their families?
HN: Many of our members have planned awareness-raising activities at the national and regional/local level, the campaign will also be supported actively online. Throughout the campaign, we will highlight the needs of autistic people in relation to various policy priorities, at the EU, national, regional and local levels. AE and its members will raise awareness of various issues such as access to legal capacity and self-determination, support for independent liiving, education, health, employment, and community support services. At the EU-level, ensuring that the implementation of the new Strategy for the rights of persons with disabilities 2021-2030 and the European Pillar of Social Rights Action Plan take into account the needs of autistic people will be central to our advocacy. You can find more information on our key policy demand in our manifesto.
Reproduction of original article publish in RTV Slovenija on April, 5. Link here.