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.

The current hodgepodge of diagnostic criteria isn't what I'd call precise either, and it's full of unnecessarily negative language.

Amy, we seem to be looking at this issue from diametrically opposed viewpoints.  I haven't been diagnosed, nor have I had "trouble being diagnosed."  I don't want to be diagnosed.  I consider myself very fortunate that my parents never allowed anyone to officially diagnose me.

As I see it, the autism diagnosis is just another form of apartheid dressed up in scientific terminology; it causes autistic children to be placed in segregated classrooms or institutions and to be told that they are incapable of succeeding in life, it causes autistic parents to lose custody in divorce cases or to have their children taken away by social service agencies--and if we don't fight it now, in every way we can, it's going to cause autistic babies to be routinely aborted.

To put it another way, the diagnosis is the equivalent of sewing yellow stars on our clothing.

Yes, bullying is a problem that needs to be addressed, but bullies have existed throughout history, they can often be avoided by changing jobs or schools, and we're not their only targets.  We need to separate these issues and get our priorities straight.  Official discrimination, such as the cases we've discussed recently of autistic children being sterilized or given electric shocks with the approval of the court system, is far more dangerous.

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.

The psychological establishment has already classified us in general terms and gotten us "recognized" as mentally impaired.  

We need to be creative and put together a description of our population and culture that's comparable to descriptions of other minority groups.

I'll give it some thought over the next few days and post a sample description to illustrate what I have in mind.

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.

As for the legal considerations, there's only a small number of lawyers with any experience in the area of international human rights law; it's a very specialized field.

Perhaps someone at the UN will be able to provide advice or to recommend qualified counsel.

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.

I have a problem with declaring ourselves specifically a minority.  The way in which we are discriminated against parallels the way other disabled people are discriminated against (many autistic people have prejudices which don't seem to allow them to see that).  I think it is important to focus on that we all need this protection, not just one tiny subgroup of disabled people, but all disabled people.  (If people want to get snobbish about whether autism is "a disability" or not, all I can say is that in my country I'm currently dealing with life and death issues for all disabled people and that fighting specifically for autistic people's international-law rights at this point and leaving out other disability groups in the process seems incredibly short-sighted and narrow-minded.  I don't care what terminology any individuals use but autistic people had better be covered under disability law or there will be enormous problems.)

Hi anbuend, you said -

"I have a problem with declaring ourselves specifically a minority. The way in which we are discriminated against parallels the way other disabled people are discriminated against (many autistic people have prejudices which don't seem to allow them to see that)."

It does parallel the way other are discrminated against, and there are people working for other disability groups too, I am choosing to work for autistic rights, as its an issue that personally affects me, and I know a lot about it, how can all of us work for all issues?, it would be an enormous task, most people focus on one issue or group. I am very surprised that you think many autistic people have prejuduces in that sense. It is FAR greater in NT's that I have met, so much more so.

"I think it is important to focus on that we all need this protection, not just one tiny subgroup of disabled people, but all disabled people. (If people want to get snobbish about whether autism is "a disability" or not, all I can say is that in my country I'm currently dealing with life and death issues for all disabled people and that fighting specifically for autistic people's international-law rights at this point and leaving out other disability groups in the process seems incredibly short-sighted and narrow-minded. I don't care what terminology any individuals use but autistic people had better be covered under disability law or there will be enormous problems.)"

Anbuend, I dont know how much time and energy you have, but I know that to keep up with issues in the autistic community, and medical news, the law, and working on the sites etc, takes up all of my time. I dont see how I could work for ALL disabilities, and acquire knowledge of them all, and legal issues for each, I think it would be impossible to do each of them justice. Why is it narrow minded to focus on one issue and help that? Is it still helping, and its a positive move. I think you are being overly critical. If someone wanted to go to court over a legal battle concerning Down's syndrome, I wouldnt dream of saying to them "you are being narrow minded because you aren't including autism too".

It's a question of where one starts; it was hard enough to get people to consider discrimination issues when it was visible and obvious, but people like myself have no obvious difference so how will we get recognition for the fact that we are being discriminated against? OK we can argue about whether body language is "visible" or not, as what people do is misjudge us according to an unconscious response.

Irrespective, first we have to acheive recognition, and how is this possible without a group identity? The simple answer is that it isn't!

In a perfect world, yes we should argue for everyone's freedom from discrimination eventually, but to start with we have to argue our own case for the simple and evident reason no one else is going to do it for us, so can we put this PC nonsense on the back-burner for now, please?

(This is a reply to both replies to my post)

There already is a disability rights movement, internationally.  It would be infinitely easier to get disabled people considered a valid minority (and then hash out the details of autism later if need be) than to get autistic people in particular considered a valid minority (and then one by one get everyone else's specific individual little special minority within a minority group hashed out).

Disabled people -- doesn't matter which category we're in -- in the USA are facing all kinds of cutbacks right now.  Ones that will likely kill a lot of us.  You guys may talk about PC and about not having time for stuff, but we don't have time to sit around and wait for each single group to be recognized under international law.  It's like saying "We'll work for people with athetoid cerebral palsy first, and then maybe the rest of you later."  I'm not talking PC anything, I'm talking about life and death in the here and now.  There are people right now who need the protection of international law (because our national law sure ain't going to do it) and there's no way on earth I'm going to sit around and argue for only a small portion of those people.

If I seem impatient or irritated, maybe it's because right now there's a crisis going on that may threaten my own life soon and I can't afford to be narrow about it.  I and others in my country don't have time to wait around for every possible little grouping of disabled (or seemingly disabled) people to be separately listened to internationally.  I am sure there are other countries around the world where people similarly don't have time to wait.  If you want to do at least the autistic people in my country a favor in terms of international law, push for a law that includes us and other disabled people as well, it's likely to pass faster and save more of us and autistics won't be left out as some special case (remember we are considered disabled most places).

Moreover, If you're thinking internationally you have to understand the scale of things and the cultural differences.

There is no international protection for, for instance, black people in particular (who are discriminated against in my country and some others).  There is protection for racial and ethnic minorities.

There is no international protection for Jewish people in particular (who are discriminated against in my country and some others).  There is protection against discrimination based on religion or creed (and also in that case ethnic minorities).

Do you see what I'm getting at?  If you want to have protection for autistic people, it has to be statable in more general terms, and that would be something like "discrimination based on actual, implied, or perceived mental, emotional, cognitive, or physical disability" or something like that.  That protects autistic people and also other disabled people (including people who are disabled in some cultures and not others).  Saying "I just want protection for autistic people and we can get to other people later" is not "un-PC" (the whole "PC" thing seems to be just a good way of writing off an opinion rather than actually refuting it), it's like asking specifically for protection of black people or Irish immigrants or Jewish people or Catholic people or something.  It doesn't fit the pattern of international human rights law.

Why would it take more time to say that as autistic people we are one among many groups who wants disability added to international human rights law?  It doesn't take researching anything outside the autistic community.  It is far more likely to work than pushing for one little narrow group, especially since there's already people working to get the UN to recognize disability and all you'd have to do is add your voice to theirs.  You can help shape how the disability-related law is worded so that it will be understood to be inclusive of things like autism if you want.  You can still stay within your narrow group that you have time for, while pushing for the inclusion of disability.  And it's way more likely to work.  

If you want to only work from autism, then you can still add the autistic community's voice to the disability community's voice from the point of view of the autistic community, rather than wanting some totally separate and special provision for us.  Just as I'm aware that racial minorities you may not have even heard of (because they don't exist as racial minorities in the UK or the US) have added their voice to a general international concern on racism and discrimination/genocide based on ethnic identity, while still speaking from their experience as whatever racial minority they happen to have come from.

Anbuend, you have very good values and ideals, but it is unworkable to fight for all disabilities as a whole.
How could I possibly ascertain if all people affected by all disabilities wish to be regarded as a minority group?
Its very diffiicult to get opinions of the members of the autistic community that we have access to online. Most have chosen to express no opinion either way. How could I ask the millions of disabled people all around the world?

You said "It's like saying "We'll work for people with athetoid cerebral palsy first, and then maybe the rest of you later."
Anbuend, in the UK I couldnt possibly get legal aid and legal advice relating to an issue that I have no personal connection with, and I certainly couldnt pay to get legal advice for all disabilities, but I do have a chance of getting legal help for something that directly relates to me and my family. Its a very strong practical consideration.

You said "If I seem impatient or irritated, maybe it's because right now there's a crisis going on that may threaten my own life soon and I can't afford to be narrow about it."

I do understand.

You said "There is no international protection for, for instance, black people in particular (who are discriminated against in my country and some others). There is protection for racial and ethnic minorities."

Actually that is incorrect. If you look into the work of the UN, specific minority racial groups are protected. Look at those particularly in Eastern Europe as an example.