Minority status for autistic persons / by Erich Kofmel

Autistic Minority International struggles against the prevalent perception at the United Nations, based in a 1992 Declaration adopted by the UN General Assembly (http://www.ohchr.org/EN/ProfessionalInterest/Pages/Minorities.aspx), that minority status is limited to persons belonging to national or ethnic, religious, and linguistic minorities. Persons with disabilities are not commonly recognized as belonging to a protected minority, although deaf persons are viewed as a linguist minority due to their use of sign language. (Not generally acknowledged is that some autistic children and adults who do not speak also use sign language.)

Autistic Minority International wasn't the first organization to challenge this perception, though. In 2004, almost ten years before our organization was founded, a now defunct autistic-led group called Aspies For Freedom (AFF) published a manifesto entitled "Declaration from the autism community that they are a minority group", purportedly addressed to the United Nations.


"A statement has officially been released from members of the autism community that could mean a big difference to their futures.

"If successful, and the United Nations declare that the autism community is a minority group, it could help to end discrimination for those who have this neurological difference.

"The statement reads thus-

"This is a declaration from the worldwide autism community that from here on we wish to be recognised as a minority group.

"We make this declaration to assert our existence, to be able to have a 'voice' on autism, rather than only that of experts and professionals in the field, to show how discrimination affects our lives, and that we want to direct a change from this type of bias against our natural differences, and the poor treatment that can ensue thereof.

"We recognise the autism community as those diagnosed with any condition on the autism spectrum, including autism, low-functioning and high-functioning, those with Asperger's syndrome, Fragile X, hyperlexia and PDD-NOS. We are aware that there are some people who have not yet received diagnosis, yet still recognise themselves as on the autism spectrum, and have the same elements on the diagnostic criteria.

"We recognise ourselves as a minority group based on the following factors-

"People in the autism community have their own way of using language and communication that is different from the general population, is often misunderstood and can cause a bias against us.

"Autism spectrum conditions are scientifically proven to be largely genetic and heritable. Many of those on the autism spectrum who have children bear children who are also on the spectrum, this needs to be recognised to avoid the frequency of criticism of autistic parents and discrimination that is suffered as to misunderstanding of the different needs, and communication between family members on the spectrum.

"People on the autism spectrum have a unique social network, this is primarily using communication with text on the internet. It is an invaluable community for many of us. There should be increased availability and recognition for this autism community online so that isolated members of the autism community can join and participate.

"People on the autism spectrum have our own cultural differences, unique habits, such as stimming and different perspectives than the norm. We feel it is essential that this is recognised as these 'traits' are the things that some children and adults are forced to stop by some harsh and intensive therapies. We should have the right to be ourselves, without the pressure to conform and change our cultural differences.

"We experience discrimination in various forms, often because of our different use of language and communication, habitual differences such as stimming, and lack of acknowledgment that autistic parents may have autistic children, and differences in the children are not due to poor parenting, but the innate differences of our minority group.

"The members of the autism community are facing an imminent threat of possible cure, in whatever fashion that may transpire, pre-natal testing for autism that could mean a form of eugenics, and total prevention from genetic counselling before conception. We have grave concerns of the possibilty of being forced to accept a cure, of parents being forced to cure children, and of there being great pressure put on parents on the spectrum to have genetic tests, or pre-natal screening. In the same sense that this would be entirely unacceptable to cure someone's skin colour, we feel that our differences need to be respected and our minority group to be protected.

"A specific case of how being afforded protection would help members of the community is the present treatment meted out to autistic children at the Judge Rotenberg Center in Boston in the USA. The children can be given electric shock 'therapy', this is from a contraption that can be worn for many years. This inhumane treatment is sickening to members of our community, this is just one such example of many.

"We mean for this statement to begin a process of official recognition by the United Nations that we are indeed a minority group, and worthy of protection from discrimination, inhumane treatment, and that our differences are valid in their own right and not something that needs to be cured."

In today's terms, "autism community" usually indicates non-autistic parents, professionals, and charities speaking about us, without us. We prefer the term "autistic community" to demarcate actually autistic persons speaking on their own behalf. We also reject labels like "low-functioning and high-functioning", as the same person can be both, in different areas and at different times and depending on whether or not they receive adequate support, such as access to assistive technology, augmentative and alternative communication.

Still, when deciding on the name for our organization, Autistic Minority International, we were inspired by this declaration. Sadly, despite the 2006 adoption of the UN Convention on the Rights of Persons with Disabilities (CRPD), much of it is as true, and as unresolved, as it was nearly fifteen years ago. We contacted the founders of AFF, but couldn't find out what UN body or entity the declaration had been sent to, in addition to being posted online, and what response they had received, if any.