Autism-Europe

Last updated

Autism-Europe
Autism-Europe aisbl
AbbreviationAE [1]
Pronunciation
  • IPA: /ˈɔːtɪzəm/ – /ˈjʊəɹəp/
Formation1983;41 years ago (1983)
Founded at Ghent, Belgium
Legal statusNonprofit organization
Purposeactivism, education, advocacy
Headquarters Brussels, Belgium
Region
Worldwide
Fields Autism
Membership (2019)
Belgium, Czech Rep., Croatia, Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Lithuania, Luxembourg, Malta, Netherlands, Norway, Portugal, Romania, Russia, Serbia, Slovakia, Spain, Sweden, Switzerland, United Kingdom, Bulgaria, Estonia, Italy, Slovenia, Turkey, Ukraine, Albania, Kuwait, Morocco, Saudi Arabia
Official language
English, French
President
Harald Neerland
Director
Aurélie Baranger
Website http://www.autismeurope.org/

Autism-Europe is an international non-profit association located in Brussels, Belgium. The organisation is co-funded by the European Union. [2]

Contents

The association's mission is to advance the rights of people with autism in all areas of life through advocacy work and raising awareness. This includes representing people with autism in European institutions, promoting access to habilitation and education, and promoting the exchange of information, good practices, and experiences. Autism-Europe operates as an umbrella organization, bringing together 80 autism organisations in 34 European countries, including 26 European Union member states. [3] [4] [5]

History

1980s and the beginnings

Autism-Europe was founded in 1983 by a group of national and regional parents' associations. It was established following the first European Conference of Associations of Parents in Ghent, Belgium, in 1980. [6]

Under its first president, Jean Charles Salmon, the organisation identified its three main functions as monitoring, advocacy and recommendation; more specifically:

Autism-Europe was founded in the context of a changing public understanding of all disabilities. A new conception of disability was emerging, called the "social model of disability" (as opposed to the "medical model of disability"), which aimed to redefine disability to focus on the relationship between people and their environment. This understanding is based on the idea that social barriers must be removed to enable people with disabilities to participate fully in society, becoming active members who can represent themselves and exercise their rights. [7]

1990s

The Charter of rights for people with autism

In 1992, Autism-Europe members created the "Charter for Persons with Autism", a Charter which outlined the rights of autistic people in all aspects of life. [8] Following that, Autism-Europe decided that for the charter to have relevance at the European level, it must also have political endorsement. Autism-Europe therefore campaigned for political support and approval for the charter. The charter was adopted as a written declaration by the European Parliament in 1996. [9]

2000s

Collective complaint on the right to education in France

Autism-Europe launched the first collective complaint before the Council of Europe on behalf of people with disabilities in 2002. [10] Autism-Europe was represented by Evelyne Friedel, a lawyer with an autistic son. [11]

In 2004, the Council of Europe publicly announced its condemnation of France for having failed its educational obligations to persons with autism under the revised European Social Charter. The Council of Europe's decision put pressure on France and other countries in the Council of Europe to live up to their obligations under the European Social Charter by providing education for people with autism, both within mainstream and specialised schools. [12]

Following the decision, the French government launched its first "Autism Plan", which included measures to create new facilities and include children with autism in mainstream schools. [13]

United Nations Convention on the Rights of Persons with Disabilities

In 2006, after four years of negotiations, the United Nations General Assembly adopted a new convention specifically for people with disabilities. The Convention on the Rights of Persons with Disabilities reaffirms that all people with all types of disabilities, including autism, must enjoy all human rights and fundamental freedoms. It is legally binding for countries that ratify it. [14]

Autism-Europe took part in the consultation process leading to the drafting and adoption of the UN Convention, and continues taking part in the review process of the European Union by the United Nations. [15] The convention has since been ratified by most countries in Europe, as well as the European Union, and therefore must be implemented in these countries and within the EU's fields of competence.

The Council of Europe's recommendations on education

Following the collective complaint on the right to education in France in 2002, the Council of Europe established a group of experts – of which Autism-Europe was a member – to look into the issue of access to education for children with autism. [16] This resulted in the Council of Europe's "Resolution ResAP (2007)4 on the education and social inclusion of children and young people with autism", which was adopted as a recommendation in 2009 (CM/ Rec(2009)9). [17]

While this recommendation is not binding for the members of the Council of Europe, it applies pressure to implement policies promoting access to education and the inclusion of people with autism.

2010s

European Parliament's Written Declaration on Autism

In September 2015, the European Parliament officially adopted the Written Declaration on Autism, co-signed by 418 Members of the European Parliament. The document, co-drafted by Autism-Europe, calls on the European Union and its member states to adopt a European strategy for autism that will support accurate detection and diagnosis across Europe, promote evidence-based treatment and support services for all ages, foster research and prevalence studies, and encourage the exchange of best practices. [18]

Activities

Autism-Europe operates as an umbrella organisation, bringing together 80 member autism organisations in 34 European countries, including 26 European Union Member States. [3] It works at raising public awareness and influencing European decision-makers on issues relating to the rights of people with autism and other disabilities.

Autism-Europe has established a structured dialogue with the European Institutions and is also active with the World Health Organization and the United Nations. It also participates as a non-governmental organisation in the Council of Europe. [19]

Autism-Europe's main activities revolve around its advocacy work at the EU and national level, awareness-raising campaigns, and dissemination of information. Its main publication is its biannual LINK magazine, which presents news on the subject of autism and member activity. Autism-Europe also publishes research publications to support its advocacy activities, which have recently focused on education, [20] employment [21] and ageing. [22] Every three years, Autism-Europe organize an international congress dedicated to sharing knowledge regarding advances in the field of autism.

See also

Related Research Articles

The disability rights movement is a global social movement that seeks to secure equal opportunities and equal rights for all people with disabilities.

<span class="mw-page-title-main">Neurodiversity</span> Non-pathological explanation of variations in mental functions

Neurodiversity is a framework for understanding human brain function that recognizes the diversity of human cognition as a biological fact. The neurodiversity paradigm argues that diversity in human cognition is normal and that some conditions classified as mental disorders are differences and disabilities that are not necessarily pathological.

The post-autistic economics movement, or movement of students for the reform of economics teaching, is a political movement that criticises neoclassical economics and advocates for pluralism in economics. The movement gained attention after an open letter signed by almost a thousand economics students at French universities and grandes ecoles was published in Le Monde in 2000.

<span class="mw-page-title-main">Autism rights movement</span> Disability rights movement for autistic people

The autism rights movement, also known as the autistic acceptance movement, is a social movement allied with disability rights that emphasizes a neurodiversity paradigm, viewing autism as a disability with variations in the human brain rather than as a disease to be cured. The movement advocates for several goals, including greater acceptance of autistic traits and behaviors; reforms of services – i.e. services that focus on improving quality of life and well-being instead of suppression and masking of autistic traits that are adaptive or not harmful or imitations of social behaviors of allistic (non-autistic) peers ; the creation of social networks and events that allow autistic people to socialize on their own terms; and the recognition of the autistic community as a minority group.

<span class="mw-page-title-main">Autistic Pride Day</span> Annual celebration held on 18 June

Autistic Pride Day is a pride celebration for autistic people held on 18 June each year. Autistic pride recognises the importance of pride for autistic people and its role in bringing about positive changes in the broader society.

Self-advocacy is the act of speaking up for oneself and one's interests. It is used as a name for civil rights movements and mutual aid networks for people with intellectual and developmental disabilities. The term arose in the broader civil rights movements of the 1960s and 1970s, and is part of the disability rights movement. Today there are self-advocacy organizations across the world.

People-first language (PFL), also called person-first language, is a type of linguistic prescription which puts a person before a diagnosis, describing what condition a person "has" rather than asserting what a person "is". It is intended to avoid marginalization or dehumanization when discussing people with a chronic illness or disability. It can be seen as a type of disability etiquette but person-first language can also be more generally applied to any group that would otherwise be defined or mentally categorized by a condition or trait.

<span class="mw-page-title-main">Societal and cultural aspects of autism</span>

Societal and cultural aspects of autism or sociology of autism come into play with recognition of autism, approaches to its support services and therapies, and how autism affects the definition of personhood. The autistic community is divided primarily into two camps; the autism rights movement and the pathology paradigm. The pathology paradigm advocates for supporting research into therapies, treatments, and/or a cure to help minimize or remove autistic traits, seeing treatment as vital to help individuals with autism, while the neurodiversity movement believes autism should be seen as a different way of being and advocates against a cure and interventions that focus on normalization, seeing it as trying to exterminate autistic people and their individuality. Both are controversial in autism communities and advocacy which has led to significant infighting between these two camps. While the dominant paradigm is the pathology paradigm and is followed largely by autism research and scientific communities, the neurodiversity movement is highly popular among most autistic people, within autism advocacy, autism rights organizations, and related neurodiversity approaches have been rapidly growing and applied in the autism research field in the last few years.

The Autistic Self Advocacy Network (ASAN) is an American 501(c)(3) nonprofit advocacy organization run by and for individuals on the autism spectrum. ASAN advocates for the inclusion of autistic people in decisions that affect them, including: legislation, depiction in the media, and disability services.

<span class="mw-page-title-main">Mental Disability Advocacy Center</span> Non-governmental organization

The Mental Disability Advocacy Center (MDAC) is an international human rights organisation founded in Hungary in 2002. It is headquartered in Budapest.

<span class="mw-page-title-main">Ari Ne'eman</span> American autism rights advocate

Ari Daniel Ne'eman is an American disability rights activist and researcher who co-founded the Autistic Self Advocacy Network in 2006. On December 16, 2009, President Barack Obama announced that Ne'eman would be appointed to the National Council on Disability. After an anonymous hold was lifted, Ne'eman was unanimously confirmed by the United States Senate to serve on the Council on June 22, 2010. He chaired the council's Policy & Program Evaluation Committee making him the first autistic person to serve on the council. In 2015, Ne'eman left the National Council on Disability at the end of his second term. He currently serves as a consultant to the American Civil Liberties Union. As of 2019, he also is a Ph.D. candidate in Health Policy at Harvard University.

<span class="mw-page-title-main">Autism Cymru</span> Former Welsh national charity for autism

Autism Cymru was Wales' national charity for autism with offices in Cardiff, Wrexham, and Aberystwyth. The charity was established in May 2001 through an initial 3-year grant provided by The Shirley Foundation. The founder chair of the Trustees was Dame Stephanie Shirley of the Shirley Foundation.

The history of autism spans over a century; autism has been subject to varying treatments, being pathologized or being viewed as a beneficial part of human neurodiversity. The understanding of autism has been shaped by cultural, scientific, and societal factors, and its perception and treatment change over time as scientific understanding of autism develops.

<span class="mw-page-title-main">Lydia X. Z. Brown</span> Autistic disability rights activist

Lydia X. Z. Brown is an American autistic disability rights activist, writer, attorney, and public speaker who was honored by the White House in 2013. They are the chairperson of the American Bar Association Civil Rights & Social Justice Disability Rights Committee. They are also Policy Counsel for Privacy & Data at the Center for Democracy & Technology, and Director of Policy, Advocacy, & External Affairs at the Autistic Women & Nonbinary Network. In 2022, they unsuccessfully ran for the Maryland House of Delegates in District 7A, losing to state delegate Kathy Szeliga and delegate-elect Ryan Nawrocki.

<span class="mw-page-title-main">Julia Bascom</span> American autism rights activist

Julia Bascom is an American autism rights activist. She is a former executive director of the Autistic Self Advocacy Network (ASAN) and replaced Ari Ne'eman as president of ASAN in early 2017 before stepping down at the end of 2023.

<span class="mw-page-title-main">Olivia Cattan</span>

Olivia Cattan is a journalist and author. She is also a campaigner. Cattan is president of "SOS autisme France" and honorary president of the campaigning feminist organisation, "Paroles de femmes" which she established.

<span class="mw-page-title-main">Disability in France</span>

Approximately 12 million French citizens are affected by disability. The history of disability activism in France dates back to the French Revolution when the national obligation to help disabled citizens was recognized, but it was "unclear whether or not such assistance should be public or private." Disabled civilians began to form the first associations to demand equal rights and integration in the workforce after the First World War. Between 1940 and 1945, 45,000 people with intellectual disabilities died from neglect in French psychiatric asylums. After the Second World War, parents of disabled children and charities created specialized institutions for disabled children for whom school was not accessible. In 2018, the French Government began to roll out a disability policy which aimed to increase the allowance for disabled adults to €900 per month, improve the digital accessibility of public services, and develop easy-to-read and understand language among other goals.

<span class="mw-page-title-main">Jessica Benham</span> American politician and disability rights activist (born 1990)

Jessica L. Benham is an American politician and disability rights activist serving as a member of the Pennsylvania House of Representatives for the 36th District. She is the first openly LGBTQ+ woman and first openly autistic person elected to the Pennsylvania General Assembly. She cofounded the Pittsburgh Center for Autistic Advocacy in 2014.

<span class="mw-page-title-main">Disability Day of Mourning</span> Annual filicide commemoration

The Disability Day of Mourning is observed annually on 1 March to commemorate disabled people who were murdered by their caregivers, especially their parents. First observed in 2012 and propagated by disability rights organizations such as Not Dead Yet and the Autistic Self Advocacy Network, the day aims to bring attention to the issue of filicide of disabled children and adults and the degree to which such murders are treated as different from or more socially acceptable than similar murders of abled people.

<span class="mw-page-title-main">Autism in France</span> The history of autism in France

The history of autism in France is marked by the strong influence of psychoanalysis, and by the persistence of institutionalization practices that violate the fundamental rights of autistic people. According to estimates at the end of 2016, 0.7 to 1% of the French population has an autism spectrum disorder, most of which is undiagnosed, leading to varying degrees of disability.

References

  1. "Autism Europe". Archived from the original on 13 October 2020. Retrieved 14 October 2020.
  2. "Autism Europe". Archived from the original on 13 October 2020. Retrieved 9 October 2020.
  3. 1 2 "Our members". Autism-Europe. 7 June 2016. Archived from the original on 28 September 2016. Retrieved 18 September 2016.
  4. Dorigo, Serenella (29 September 2019). "Ben rappresentata l'Italia al Congresso Internazionale di "Autism Europe" svoltosi a Nizza". Ilfriuliveneziagiulia (in Italian). Archived from the original on 20 October 2021. Retrieved 14 October 2020.
  5. "Federação | FPDA – Federação Portuguesa de Autismo". www.fpda.pt. Archived from the original on 28 September 2020. Retrieved 14 October 2020.
  6. 1 2 "1983–1992" (PDF). LINK (59): 4. June 2013.[ permanent dead link ]
  7. Volkmar, Fred R. (2013). Volkmar, Fred R (ed.). Encyclopedia of Autism Spectrum Disorders. New York, NY: Springer New York. doi:10.1007/978-1-4419-1698-3. ISBN   978-1-4419-1698-3. S2CID   241009937. Archived from the original on 14 June 2024. Retrieved 2 July 2024.
  8. Autism-Europe. "Charter for Persons with Autism" (PDF). Archived from the original (PDF) on 5 July 2016. Retrieved 11 July 2016.
  9. Matthews, Pat (1996). "The Charter of Rights for Persons with Autism". Archived from the original on 7 August 2016. Retrieved 7 July 2016.
  10. Autism-Europe v. France, complaint No. 13/2002
  11. Friedel also became the president of Autism-Europe in 2008, serving to 2011
  12. "International Association Autism Europe v. France, Complaint No. 13/2002". ESCR-net. 2002. Retrieved 7 July 2016.
  13. Haroche, Aurélie Haroche (2014). "Scolarisation des enfants autistes: la France tancée à nouveau par le Conseil De l'Europe" [Education of autistic children: France scolded again by the Council Of Europe]. Jim.fr (in French). Archived from the original on 17 August 2016. Retrieved 7 July 2016.
  14. United Nations. "Convention on the rights of persons with disabilities". Archived from the original on 2 December 2016. Retrieved 7 July 2016.
  15. "United Nations delivers Observations on the implementation of the rights of people with disabilities by the European Union" (PDF). LINK (63): 7. June 2015. Archived from the original (PDF) on 6 August 2016. Retrieved 7 July 2016.
  16. Council of Europe (2007). "Partial Agreement in the Social and Public Health Field". Archived from the original on 3 August 2009. Retrieved 8 July 2016.
  17. Council of Europe (2007). "Resolution ResAP(2007)4 on the education and social inclusion of children and young people with autism spectrum disorders". Archived from the original on 16 September 2016. Retrieved 8 July 2016.
  18. "Labour MEPs place autism high on Europe's agenda". Malta Today. 2015. Archived from the original on 17 May 2016. Retrieved 7 July 2016.
  19. "Conference of INGOs". Archived from the original on 3 October 2016. Retrieved 27 July 2016.
  20. "Autisme: l'école interdite" [Autism: The Forbidden School]. Metro News (in French). 2015. Archived from the original on 30 January 2016. Retrieved 7 July 2016.
  21. "L'Oreal punta ad assumere due ragazzi autistic" [L'Oreal aims to take two autistic boys]. La Stampa (in Italian). 2014. Retrieved 7 July 2016.Centre de Ressources Autisme (2015). "L'association Autisme Europe publie deux rapports sur le thème de l'emploi des personnes avec autisme" [The Association Autism Europe publishes two reports on the subject of the employment of people with autism] (in French). Archived from the original on 17 August 2016. Retrieved 7 July 2016.INSHEA (2014). "Rapport: Autisme et travail" [Report: Autism and work] (in French). Archived from the original on 20 September 2016. Retrieved 7 July 2016.
  22. Salman, Saba (15 July 2013). "We need to know and do more about ageing with autism". The Guardian. ISSN   0261-3077 . Retrieved 7 July 2016.