Cultural Aspects
"Autism in itself is not a hell. Hell is only created by a society that refuses to accept people who are different from the norm or wants to force these people to conform." (O'Neill 2001, p. 71)
Autism is also a cultural construct. In a culture that defines "being different" as a defect, behavior is declared a problem. Only in such a system do "autistic people" exist as a pathologized group [1].
Since autistic people neurobiologically depend on specific framework conditions to grow up healthy, the creation of a Universal Design [2] is essential.
Defining a Culture of Autism Participation
Autism describes people with highly sensitive, idiosyncratic stimulus processing. This biological makeup leads to a perception and structure of thought that differs significantly from the majority.
Diversity & Neurodiversity To date, the principle of diversity [3] has been insufficiently implemented. While biological diversity is considered worthy of protection, neurobiological variation [4] is often still viewed as a flaw. Disability only arises through the barriers [6] of an environment [5] tailored to the majority. A true culture of participation creates environments that guarantee healthy development without the pressure to conform.
Social Change Society and culture are changeable. Inclusion means dismantling barriers to such an extent that Universal Design becomes the norm. Then, it will no longer be necessary to speak of "autistic people" or "inclusion," because the system already accounts for everyone. In the current transition phase between suffering and pride, autistic people are playing a decisive role in shaping this development process.
Bio-Diversity
(Article in collaboration between ESH and White Unicorn e.V.)
The UN Convention on Biological Diversity [1] entered into force on December 29, 1993. The focus of this legal framework is the conservation and sustainable use of biological diversity, which is considered an essential foundation for human well-being. The destruction and fragmentation of habitats are seen as by far the greatest threat to biological diversity on Earth. This protection, deemed urgently necessary for habitats, also implies that people belonging to minorities must be allowed to pursue their own inherent and species-appropriate development.
In recent decades, the habitat for the minority of autistic people has been increasingly restricted by barriers, as majorities make wrong decisions regarding their needs and believe they must lead them into lifestyles deemed "suitable." Autistic people (who, according to UN estimates, number 67 million worldwide) have for years been rebelling against the pathologization and stigmatization of their individual nature and are demanding their right to a species-appropriate life without barriers.
Their demand is that pathologization and stigmatization must urgently be replaced by suitable approaches that enable a barrier-free development, especially for autistic children early in their lives. They are individual beings, many of whom must resist any form of standardization to remain healthy and who can become joyful people in a suitable environment.
The goal must be to respect this individuality—not least from a human rights perspective—and to flexibly support the growth of such children, meeting their individual needs in individual situations. Inclusion means taking people seriously in their real needs—without labeling them or categorizing them into catalogs of pathology or imposing models of disability—and relieving them of misguided majority opinions. Categorizations with personal assignment of disability, for example to receive funding or aid, must be stopped and, if necessary, converted into anonymized benefits in kind that enable a self-determined life in the midst of society.
This approach would preserve the diversity of autistic people in the sense of maintaining the variety of human existence in accordance with the requirements of universal design.
References
[1] COLIN MÜLLER: http://autismus-kultur.de/autismus/autipedia/autismus.html
[2] UN CRPD (Convention on the Rights of Persons with Disabilities): https://www.behindertenrechtskonvention.info
[3] The Convention on Biological Diversity (CBD) – 1992
[4] Jaarsma / Welin: Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement. Linköping University, 2014
[5] Nick Walker: Julia Bascom (Ed.): Loud Hands: Autistic People, Speaking. The Autistic Press, Washington, DC 2012
[6] ESH (Enthinderung statt Heime): http://autisten.enthinderung.de/kollision