Whatever happened to the AFF declaration on minority status?

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Hi Aspendos
It seems you are getting things started. In reality, even in teams and consensus groups. there is often a key person who shows leadership skills. I believe good leaders often have autistic-like traits. So don't be pessimistic as you may be the right person for this job. You have put yourself forward and have a lot of information. Thank you for the information. It will take me a while to read all of it!

I would like to see a good declaration of autistic rights coming from autistic people. The process of discussing and formulating this declaration brings people together and clarifies ideas and goals. This process is just as important as having it adopted by an NGO or the UN,

The disability rights slogan "nothing about us without us" is also very important in our cause. We have the ability to self advocate and co-operate. Let's believe in ourselves. We are good at discussing things when there is an inspiring topic of discussion. We are very focussed so we sometimes move more quickly than others do. We often get more passionate about our beliefs than others do, so this means we end up working by ourselves. We leave others behind because we are intense and focussed and get straight to the heart of the matter and sometimes we have a higher IQ. This can make some people feel like we are not team players but I don't support these pressures to slow ourselves down and conform. We are meant to be this way - yes we have our faults but people are jealous of our abilities and project their resentments on to us.

I would like to see a strong policy on women on the spectrum as there is still a pressure for us to adopt "feminine" interests, tastes and behaviour when in fact we have the "extreme male brain." Who made me autisitc? God made me autistic and anybody who doesn't like the autistic brain can complain to the manufacturer I believe society is more tolerant of men on the spectrum as it is more "normal" for a man to excel in maths, avoid small talk, wear comfortable clothes and have a strong focussed interest. The social pressure on women to adopt "feminine" behaviour does help us develop more social skills but also puts a lot of personal pressures on us.

I would like to see any such document define autism primarily as a variation rather than a disorder, as autism is only disabling in its extreme form, when combined with very low IQ, lack of social acceptance and lack of social skills training opportunities. Social skills training is an educational need and our educational needs are just as valid as anybody else's educational needs. In fact I would like to see autism defined as a vital component of human society because of the contribution that autistics make to creativity and science.

So respect, acceptance, non-judgemental accommodation of our needs, recognition of our abilities and encouragement of self advocacy are the key issues, I feel. Educate the public to understand and accept the differences.

I hope others will read the websites you supplied and contribute to the discussion also. We have just started daylight saving in Australia and I need to try and catch up an hour of sleep, but I will try and do a bit of this reading tonight and look forward to the replies tomorrow!

I think any declaration of our rights should state something like this:

"Autistic minds are essential to the survival of humanity. In a world facing increasing environmental, social and military problems autistic people are uniquely placed to think outside the square and pursue original solutions. Autistic minds should be nurtured and encouraged. But instead autistics are often pressured to conform and socially ostracised."

Sorry I can't help you with any technical aspects. Possibly we could have a yahoo chat group amongst people interested in helping to draft such a document. I think you made a good start in 2008. We need to strike a positive note but not hide negative aspects. I find some of the comments made by Templin Grandin in the youtubes of her speeches very inspiring.

The comments we have contributed so far have been of a general nature. I also would like to see specifics. In particular the right to challenge job descriptions which call for someone with "team work skills" - an autisitic person who can prove they can do the job without such a high level of teamwork interaction such have a fair chance at getting the job. We should be supported in publicly declaring that we are autistic. People should respect us the way we are. Our right to take a break from social interactions should be respected. We should be allowed to take a tea break or lunch break alone instead of being forced to build relationships with peers and interact socially during our own breaks. No-one should label us as anti-social just because we have different social needs. No-one should label us as egotistical just because we show depth, passion and insight on our focus subjects. We should not be subjected to pressures to dress or decorate our homes according to commercialised social expectations. Instead others can learn from our down to earth and hard working ways.

Learning the rules of society is our educational right, however our own choices should be affirmed, not corrected, even if we remain out of step with the majority.

In particular we should have the full rights to choose our lives, including not marrying, or marrying without false and pretentious traditions or ceremonies or wedding rings should we choose this.

We should win the right to come out of the closet and mingle in our own communities as gays have done. Perceptions of autistics should be based on facts not media stereotypes. The facts about our condition need to come from individual autistics as we are a broad spectrum. Professionals need to update their knowledge. People running autism awareness seminars should invite autisitics in preference to inviting professionals, or in addition to inviting professionals - self advocacy should be encouraged wherever possible and we should receive the training to present all the medical/psychological and social facts to professional circles and community groups ourselves.

Autistic women should receive more support in expressing our personal tastes and interests and I am sick of conformist women wrinkling up their noses when i say i have a degree in maths. We should be protected from bitchiness. We should not be pressured to participate in girlie chat and shopping binges. Our dress choices should be praised as more liberated, less consumeristic and more "green". There should be no pressure to dumb down at work to fit the female social circle or the male expectation. There should be no adverse consequences for women declaring that we have the "extreme male brain". All ridiculous stereotypes about "unfeminine" women should be challenged and overturned. Autisitic women should be supported, by the women's movement and lesbians, as a group of women who are legitimately and proudly out of step with narrow female stereotypes.

"Co-morbidities" such as dyspraxia should be understood and catered for. Twice I have attempted to buy specially made comfortable dress shoes from stockists of these products and I have faced dismissive comments from shop assistants insisting the shoes are for older women and are unfashionable - these comments from the people who are supposed to be making money out of selling me these shoes! This just goes to show the additional pressures faced by women on the spectrum. In any case why does my dyspraxia have to be called a "co-morbidity", a "disorder", why am I seen to have an "abnormality" and to be "very superior" in maths? I am 55 and was only officially diagnosed last month and autism is the only kind of normal I have known and lived with for 55 years. We should demand the right to have our characteristics re-named by professionals using non-judgemental language.

I'm a pretty competent webmaster, it takes being in close contact with one's hosting provider but as a serious geek generally speaking I'm up to the task. It occurs to me that this may be best done by PM, but I'd be happy to help point you towards good petition sites or formats for this type of cause online, I have a pretty good head for legalese as Thelibrarian pointed out.

Am waiting to hear what others have to say

I am sure that the United Nations listens to documents drafted by obscure internet websites all the time.And I am sure as soon as they wrap up all the problems in Syria they will visit this website and consider a petition of this matter of minority status for autism.
and im sure they will park anywhere they want outside of Alexes office building because the diplomatic plates make them imune from parking tickets

Every minority group started somewhere. Between us we've got the passion and conviction to make things happen. This is an idea whose time has come.

cberg, aren't you mistaking the UN for the NSA?

Vermontsavant, if you think that the tens of thousands of people working at the UN all deal exclusively with Syria, then you're also mistaken. Read my earlier posts, please. I tried to clarify who we might need to talk to - in person, and ongoing.

Yesterday, I came across some information that Autism Speaks gave $600,000 to the WHO. Guess who they listen to?

Our best angle is to work with the UN human rights bodies - that Autism Speaks isn't targeting and that aren't (easily) swayed by money - and yes, minority status is a good "in" with them.

i did not say the UN only deals with syria.they were just a obvious example to use

I exchanged a few PMs with eucalyptus and we may have come up with something that is more realistic and more practical in the immediate term, namely writing a handbook for autism activists (whether on the spectrum or not, but with a focus on self-advocacy) who would like to get involved at the UN by attending conferences, submitting input on countries up for review in the human rights treaty bodies, and the like. This could have all sort of chapters about issues we might want to see addressed repeatedly on such occasions and could be very useful, as activists in various countries might use it as a guide on how to provide input to the UN. We can put this up as a PDF on the website of my NGO, keep updating it as need be, circulate it and link to it.

(Here's why this is the better alternative (in case my previous posts weren't clear enough): In my opinion we have two major challenges that we need to overcome before a declaration or similar document can be effective. First, any such document would need to be supported by a great number of autism (self-advocacy) organizations. Private citizens don't really have any weight at the UN, but civil society does. Civil society, in their understanding, means however NGOs and CSOs. My intention with setting up an NGO in Geneva is on the one hand to claim a space that isn't currently occupied (i.e. no autism-related NGO is active in Geneva, as far as I can tell) and on the other hand to offer a focal point for just such a coalition of self-advocacy NGOs and CSOs, be it existing ones that associate with the Geneva-NGO or local chapters of my NGO. Such a coalition of organizations would then have the backing to be taken seriously at the UN if it were to propose a "declaration" of sorts (particularly if we can also link up with other disability and/or minority organizations). The second major challenge is however to find a country that is willing to support such a declaration and introduce it in the Human Rights Council or even the General Assembly (like Autism Speaks cooperates with Qatar and Bangladesh). This will require significant research, but I may have some leads.

One challenge in writing a declaration is that it is so difficult to describe what autism actually is and the fact that it's not the same for everyone on the spectrum. Even after reading WP for months I find it hard to say even one sentence about it that someone else here would not contradict. One reason for this may be that our experiences are just so different, whether people are married or alone, diagnosed as children or adults, male or female, etc. Writing, for example, the education section of such a document would be fairly difficult because educational systems are so different from one country to the other and I for one don't have any clue what schools do today to accommodate students on the spectrum (nothing in my day). That's why UN resolutions will generally just say something along the lines of "adequate support should be provided". Any attempt at being more specific in a UN declaration might get frustrated by the UN realities. The UN's slow pace and general level of detachment is however fairly conducive to someone on the spectrum, as long as they don't expect any immediate results.

That's why I thought of a handbook/guide for activists instead, and eucalyptus seems to agree. What about you, cberg? What do others think? Who would be interested in getting involved in this?