Autism rights

I just found this group: http://falseeconomy.org.uk/campaigns/item/act-now-autism-campaigners-together

I agree with you Daisygirl - and I'm one of the ones who generally appears NT (I think), at great cost to myself.

I do think that people think autism is a childhood condition as Longman says, I think they think that once you grow up you either don't have it or you control it (which in their eyes is the same as saying you don't have it).  They just don't understand that even those who mask and appear to fit in well, are going through all the same processes inside that a more obviously autistic person is.  They think being able to apparently "control" something means it's insignificant (and unworthy of diagnosis).

I don't know what the answer is, because in my opinion, unless you have it you can never know what it is like to have it.  Someone can close or cover their eyes and know what it must be like to be blind.  Or put industrial strength ear plugs in and know what it is to be deaf.  But ours is an invisible disability and how can you show someone what it's like.  If someone with ASC gets incredibly anxious about something, NT peers will have the attitude "what's the matter with you"" "why are you panicking" and have little sympathy.  So with it always being NTs who run hospitals and everything else, how can we hope for understanding.  Unless there is a huge crack down by the government, making it compulsory for everyone in a public service role to have autism training and rules for reasonable adjustments are heavily enforced, we will get nowhere.  They could send out a sheet before appointments (like they do with maps of how to get there, or the questionnaires about your ethnicity or sexual orientation) asking for you to complete it if you have autism and they automatically provide the adjustments you ask for.  But everyone needs the training.  Considering what a huge minority we are I cannot believe this is not already being done as a bare minimum.

Our problem though is money.

Historically the main driving force with autism lies with parents groups, very largely the origin of NAS. Most of the attention to autism lies with children and teenagers.

There's still an established and widespread myth that you grow out of autism. This is exacerbated by parents groups that are outspoken against adult autism taking money away from the primary focus on young people. It is also affected by a culture that offers parents a prospect of a cure before adulthood (if you pay a lot of money for the services provided!)

Adults on the spectrum have little public sympathy. There are TV stereotypes of adults with autism engaging in improper sexual advances, or who might be suspects where children are involved. A lot of public reaction is apparent to oddly behaving adults in social contexts, who don't seem to have a good excuse for not conforming.

If only 15% of us are in secure employment, that leaves an awful ot on benefits, as is becoming patently obvious with the Government campaign to get people off benefits. Adults with autism/aspergers are perceived by the public as scroungers making feeble excuses.

Blind people can point to achievers - successful people who are blind. After all there has been an MP in Parliament and in office for many years who has a blind dog (albeit the media makes fun of this). And many more blind people are in work compared to those on the spectrum. Blind people are seen as doers.

Now there are achievers on the autistic spectrum - but what do we get all the time - oh if you can get somewhere you haven't really got autism. Also many successful people with autistic spectrum feel they have to keep quiet about it, because there's a stigma.

There's a book by Ioan Jones "Asperger's Syndrome and High Achievement" Jessica Kingsley Publishers 2006, which charts famous people through history who might have had aspergers. What about people out there now?

One of the problems is that social difficulties hinder promotion prospects and recognition. You can be very clever and even brilliant, but if you don't behave right you wont get in top public positions. Promotion in this country is through people management rather than scientific or technological ability. People with aspergers or HFA are unlikely to do well in the management stream.

This brings me to money. There are blind people, or influential people with blind relatives, who put money into research and services for the blind. But also there are blind adults out there as well as blind children and teenagers, so help is available across the age groups, particularly valid as some people go blind later in life.

Where's the money for adults with autism? Not much sign of it. And we mostly haven't got high incomes with which to contribute or help ourselves. Indeed if only 15% have permanent employment, that's not much money coming in.

NAS is still parent subsidised

Let me just add that the NAS is trying to lobby, but I just wonder if it has to be autistic people themselves who take control to force the changes needed.