• Replies 3 replies
  • Subscribers 79 subscribers
  • Views 1418 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Autism rights

DaisyGirl

I am not sure if Autism Rights is a good title for this post, but I couldn't think of what else to call it.

I am an adult with Aspergers who has very very pronounced autism traits, and I am having an absolutely awful time with NHS treatment and a complete lack of understanding about the needs of people with autism, or any interest in autism. This despite following all suggestions of informing departments beforehand about an autistic person coming and my extreme anxiety regarding hospitals and medical treatment. It has now got so bad I cannot go into a hospital again. This petrifies me for my current and future medical needs, and of course makes the anxiety worse.

However, my experiences have got me thinking. Why are we putting up with this?

I saw a documentary years ago regarding the way deaf people in the past were forced to try and be more like hearing people. Sign lauguage was suppressed and deaf people were forced into speaking. Now we have deaf culture. That only came about becasue deaf people took control of their lives. Don't we need to do the same?

NTs will just try to make any autistic person like them, fit in. This is because NTs are lazy and don't want to change anything about their working lives. Even wheelchair access is only a very new concession that has been preceeded by years of disability rights campaigning. 

As an adult Aspie, I would say I can accomodate the NT world up to a certain point, and then no further, the NT world has to understand and move toward my needs. I also don't see autism as a disease that needs to be cured. My autism causes me a lot of problems but it is absolutely who I am. Why should an autistic person be forced into medication for anxiety, OCD, depression all because the NT world refuses to move just a little bit. You might say that the NT word just won't move to accomodate autism, but why should this be the case? All civil rights campaigns started from a position where the established status quo put up constant barriers to changing. It was only because the various groups continued to educate, lobby etc. that change occurred. But crucially those groups were mostly made up of the people being discriminated against.

Is there an active group in the UK who are all autistic people taking control and making sure that autism awareness is run by autistic people? I think it has to be this way because there are so many people out there claiming to know about autism but who have absolutely no experience of being autistic. And too many adults and children being forced to be NT, which is just never ever going to work for them.

Sorry for the rant, but I just think things have got to change, it's not just NHS, its hospitals, the benefits system, workplaces, colleges and universities and schools, social care. Autistic people are being treated so badly, as so many of the posts here show.

Parents

  • 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

Reply

  • 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

Children
No Data