Autistics do feel excluded by the word asperger's, I have had direct complaints over using the word, instead of aspies and auties for instance, we do want to be completely inclusive with this.
Those in the gay community have reclaimed some negative words, so that may be a good example.
I do agree with not using the word disorder, but the word spectrum is very descriptive, and useful.
Autism doesnt sound like a medical word to me, when I hear it I think of my son and myself and "autistic pride" etc.
Bonnie- " Most people think "***" when they hear "autism."
I wonder if that is more so in the US, the word *** is used much less here, certainly as an insult, and I think more people in the UK think "special needs" when they hear autism.
As far as which minority group specifically we would be, I am not sure yet, as to prove that we another race would be very difficult, and could be a huge barrier, I am waiting to hear from the UN minority groups section, and hoping to get some technical advice back.
Gwyn, concerning a medical library for research on autism, Cambridge Universtiy used to offer a service where they would look ofr specific topics relating to autism and send them to you, it was free if it was 3 or less.
You could try and contact them in case they still do this. Its possible that it is now charged for or the info has been put on the web, with a fee to access it.
I personally dont see the need to separate into sub groups, I dont think it would benefit our cause as a whole at this point in time.
I think its better to be inclusive of all those on the autism spectrum.
I am still sure that the word autism is acceptable, and do not favour using the word aspergian, its not just a few complainers, it is a large section of the autism community that feels excluded by asperger terms, though we could include a section for preferences of names, and those which we want to be discontinued, such as *** and so on.
The point is we need precise words for a legal document to declare ourselves a minority.
Our situation is more complex than for some. If a religious group wanted to make a declaration, they would describe the religion and why they needed to be declared a minority group (persecution for example) and describe their differences.
For a minority race, they would describe their homeland, for instance, and language, but for our cause we are essentailly describing a diagnosis. Therefore someone could prove they were part of the minority group by showing a diagnosis, but this is flawed as so many of us havent got/cant get/dont want a diagnosis.
How would these people still be covered by the minority group position?
In that sense if we use some psychological definitions it may help, and if we could include people who strongly feel, act, and identify with autism/asperger's.
Its not easy to encompass all of that, and may be technically impossible ultimately, but I think we can at least try initially, and see what response we get.
I dont think it would help to focus on the fact that "everyone is autistic somehow", I hear NTs say that, but I dont agree with it at all. I say to them "Is everyone a bit down's", autism is clearly defined, and the average person isnt autistic, in the same way that if someone can speak french, it doesnt make them french. Is everyone a bit french?
I dont think thats necessary as some ethnic minorities live in different countries and dont share a common language, but are still a minority group, it could be a case of "Our differences join us together".
TheASMan, remember that some people with autism are non-verbal and semi-verbal, also some would struggle to learn a whole new language, I know I would myself.
It is possible to translate text on the internet now, its not perfect, but it can help to breakdown some language barriers.
Bonnie you said "No, our identity is not the diagnosis."
I know we are not, but that is essentially what we are describing as a minority group, the autism is what differentiates us from others.
Its very hard to say "we want to be a minority group, and we are people who are like this - and describe a list of different attributes, it would be a vast list, and many could then say well I have one of those, am I autistic?
To say that we have been diagnosed somewhere on the autism spectrum is a lot clearer, and we can go on to mention people who have trouble being diagnosed but still experience the same discrimination and difficulties from society.
I dont want to include the full diagnostic criteria, as its not necessary anyway, or even to mention some traits, I dont see the benefit of that, but would rather focus on who we are, and some of our unique culture and communication styles.
"The existence of the diagnosis, with the ugly stereotyping that results from it, is the reason why we need protection as a minority group, but it is not who we are."
I am certain it is not the diagnosis that causes us to need protection, but our innate differences, as my son has been bullied by local kids who know nothing of his dx, they do it cos they can see hes different, or unusual. The same has happened to me frequently, especially in the workplace in the past, before I had my dx.
It wasnt a stereotype that caused me to be treated badly, it was clear to them I was "weird, eccentric" or whatever. People can pick up on differences, maybe some aspies can get by without people knowing and it would only be if people were told that they would know. Maybe thats why some avoid a dx, in that case a diagnosis could cause more stress if people used it as an excuse to exclude and so on. But its the people who are wrong, not us, and not the dx itself.
Another point on the term "aspergian", 700 people joined Aspergia, which was amazing, but think of the millions of those with autism and AS around the world who know nothing of the word, dont identify with it, and do identify with autism and asperger's.
I'm not saying its ideal terminology, but I dont see autism as a negative word in itself, or asperger's, and if people want to be negative about it, they could very quickly do the same with the term aspergian anyway.
But how can we classify ourselves in such general terms, and hope to be recognized?
We have a long way to go, this is a start, we wont change peoples perceptions overnight, most people know relatively nothing about us, we have to think on a global scale.
I have written a statement and started to send it important people, so to speak, including Tony Blair, the UN, Simon Baron-Cohen, Donna Williams, in order to get more opinions, suggestions, and hopefully to further the idea.
Please feel free to spread the statement to relevant people, as this will at least get publicity for our cause to become a minority and we may achieve more recognition of this.
As far as I am concerned we are now a minority group, and it is a case of those in power accepting this now.
Here is the statement-
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 recieved diagnosis, yet still recognise themselves as on the autism spectrum, and have the same elelments 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 acknowledgemnt that autistic parents may have autistic children, and differences in the children are not due to poor parenting, but the innate differneces 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 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.
Written by Amy Nelson 16th November 2004
e-mail - amy@aspiesforfreedom.com
I am aware that this will by no means be technically perfect and that the terminology used may not please everyone, but I think its an important starting point, and if the UN takes up our case, there will be more legal considerations, and the final declaration could end up quite different.
This could be seen as a "skeleton" of a final declaration.
Yes, I'm trying to contact them, and have mailed it to quite a few people now to receive opinions and consideration.
I have also been able to add the statement to wikipedia, under "autistic community".
I've had positive responses from many people now, also a lot of helpful suggestions for better wording and so on.
Here is a mail from Simon Baron-Cohen giving some input-
hi amy,
this looks very interesting and important. i would question whether it is
appropriate though to make the analogy with skin colour or race; i would
also include a paragraph about people being able to exercise choice over
whether they wish to change, as it currently reads as if any attempt at
change (even if self-chosen) is in some way discrimination. ditto for
parents of a child on the autistic spectrum. one needs to protect both the
individual's right to be themselves, to have autism; and parent's rights to
seek help, support, and even intervention. but the broad spirit of the
statement is one that i would support.
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