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Autistic community

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Autistic communities are groups of people who have been diagnosed as being on the autism spectrum, or who have self-identified as autistic, along with family members and other supporters. Many such communities believe that autism is not a debilitating disease, but rather a valid variation of neurological wiring. Rather than a cure, they seek ways to help autistics develop coping strategies and use their unique perceptions and skills to contribute to society-at-large.

These communities exist both online and offline. On the internet, autistic communities consist of networks of websites, forums, and autism chat rooms, and sometimes mailing lists. Many people use these for support, which for many can be vital, and communication with others like themselves. Autistic people who cannot speak often can communicate by writing. The social limitations of autism make it difficult to make friends and establish support within general society. For these and other reasons, the online community is a valuable resource.

Contents

Different types of community

It is useful to divide autism-related groups into two broad and slightly fuzzy categories. The categorisation can usually be made accurately based on whether a group describes itself as part of the "autistic community" or part of the "autism community". The two should not be confused, because there are major differences and some friction between them. This article is principally about the "autistic community"; this section discusses the relationship between the two communities.

Autistic communities

People who identify themselves as members of the "autistic community" are generally, as described in the opening paragraph of this article, autistic adults (sometimes adolescents), and tend to focus their concern on autistic adults. They tend to resist the idea of a cure for or prevention of autism, and promote the belief that autistic children should be educated and brought up to be healthy autistic adults.

"Autistic community" groups promote the idea of autism as an inherent part of an autistic person's personality, and often reject the person-first terminology "person with autism" in favour of "autistic person". They generally seem to perceive Asperger syndrome and classic autism more as part of a continuous spectrum than as distinct conditions. They often communicate clearly, but have mixed results from their attempts to explain their positions to people who hold other points of view.

Autism communities

Groups referring to themselves as the "autism community" generally consist of but not always non-autistic parents of autistic children, and non-autistic professionals who work with autistic children. Such communities tend to focus on autistic children to the exclusion of adults, and seek a cure for and prevention of autism. They express a desire for autistic children to be brought up to be, or at least appear to be, non-autistic.

They tend to perceive autism as a disease distinct from the person with it, often using the person-first terminology "person with autism" rather than "autistic person". In addition, they tend to perceive a strong distinction between Asperger syndrome and classic autism. They also tend to perceive autistic people as unable to communicate on their own behalf, and so claim to speak for autistic people. By asserting that autistic people can't speak, they create a Catch-22 (logic) that prevents autistic people from challenging the community's authority.

Some specific examples of this type of autism community:

Friction between the communities

These two communities find themselves at odds on many issues, and each excludes the other from contributing to their websites or chatspaces. Some autistics who communicate have expressed their belief that it is particularly unjust for autism societies to be run by non-autistics, even excluding autistics from decisions that directly affect them. There does not appear to be so much of a reaction to the exclusion that occurs in the opposite direction, of non-autistic people from autistic-run fora.

Autism-related societies generally gravitate towards one of these two extremes, though there are some that are distinctly intermediate. As with many other controversial issues, there is a good deal of grey area that does not receive as much attention. For example, there are some autistic adults who agree with the "autism community" on many issues but would not resist the idea of a cure for autism. However, while one can say that most non-autistic professionals generally seek a cure for autism, due to the nature of the condition itself it is somewhat speculative to guess, proportionally, how many autistics are part of which communities.

The remainder of this article is specifically about the autistic community composed of autistic people themselves.

Declaration from the autistic community

On 18 November, 2004, some members of the autistic community issued a statement [link] expressing their desire to be recognised as a minority group by the United Nations. Note that although they use the term "autism community" to refer to themselves they are actually part of the "autistic community" according to the terminology described above.

Letter to the United Nations

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, prenatal testing for autism that could mean a form of eugenics, and total prevention from genetic counselling before conception. We have grave concerns of the possibility 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 prenatal screening. In the same sense that this would be entirely unacceptable to cure someones 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.







Autistic communication



Autistics have been present on the internet from an early date. There are many different mailing-lists and chatrooms in different languages.



Mailing-lists


Among the English electronic mailing lists for autistic communication are [ANI-L], a list hosted by Autism Network International, and [Independent Living on the Autistic Spectrum].


There are other, special-interest mailinglists such as the [autuniv-l] mailing-list, meant to be used mainly by students with autism.


In Dutch, there is the [as-kring] for anyone with an interest in autism.


In Swedish, [asperger-prat] was made for asperger discussion via e-mail.



Chatrooms


Probably the oldest English chatroom is [#asperger] on Starlink-IRC ([channel homepage]).
In this chatroom, neurotypicals are not welcome.
Most other chatrooms welcome them as well.
Neurotypicals visiting autism chatrooms are usually friends or family - usually mothers - of young children with autism.
The same network hosts [#autism]. In #autism, neurotypicals are welcome as well as autists.


Many channels have been created later.
In August 2004, the ChatAutism IRC network was created, including chatrooms such as [#chatautism] and [#aff].
October 2004, [#wrongplanet] was created on Freenode as a part of the Wrong Planet web community.
Several spinoff channels from this chatroom have been created by #wrongplanet regulars.
Each of those channels tend to be visited by a different subset of #wrongplanet visitors.


Other, less popular chatrooms, include [#aspergers] on AustNet, [#autism] on FDFNet,  [#autistichat] on Quakenet and [#aspychat] and [#autistichat] or StarChat.


The only Dutch chatroom on autism is [#autsider] on Starlink-IRC.
It is part of the Autsider web community.



Forums


By far the busiest discussion forum on asperger and autism is hosted by Wrong Planet on [wrongplanet.net].
Aspies for Freedom has some discussion boards as well.
They are not really limited to Asperger autism alone.
Other, smaller discussion forums exist.


Autsider has a [forum] in [[Dutch language|Dutch].
In June 2006, a [Norwegian aspie forum] was founded.



The real voice of autism


Articles written by autistics are found at [Autistics.org] which uses the slogan "the real voice of autism". The slogan is intended as a protest against the Autism Society of America's claim to be the voice of autism. Autistics.Org says that their slogan "the real voice of autism" refers to all autistic people, including those who disagree with Autistics.Org.



See also





External Links



Specific autistic communities












Pervasive developmental disorders / Autistic spectrum


 Diagnoses

Autism > Asperger syndrome | Autistic enterocolitis | Childhood disintegrative disorder | Conditions comorbid to autism | Fragile X syndrome | Rett syndrome | PDD-NOS | Sensory Integration Dysfunction | Multiple-complex Developmental Disorder


Controversy

Andrew Wakefield > Incidence | An epidemic? | Autism rights movement | Biomedical intervention | Causes | Chelation | Generation Rescue | Heritability | Neurodiversity | Refrigerator mother | Therapies


 See also:  List of autism-related topics






 





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