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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

  • 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.

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  • 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.

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