The 'political' side of autism

I'm very much a 'political animal' , but   the 'political' aspects of ASD  can make me feel quite stressed and uncomfortable.
I think it's because of the zealotry of some,not all, of those who self promote themselves as 'voices to be listened to' within the autistic community . There's a harshness there that makes me feel uneasy. 

There's also an attitude of 'What suits me and what I want should be the blueprint for all'.  It's the same with  mental health groups and service users on those .

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  • I'm very much a 'political animal' , but   the 'political' aspects of ASD  can make me feel quite stressed and uncomfortable.
    I think it's because of the zealotry of some,not all, of those who self promote themselves as 'voices to be listened to' within the autistic community . There's a harshness there that makes me feel uneasy. 

    There's also an attitude of 'What suits me and what I want should be the blueprint for all'.  It's the same with  mental health groups and service users on those .

    I hear you, I share your unease. The bolded part is the one I struggle with the most: I never feel such people actually speak for me and I resent it when they claim to.

    Due to seeing so much of this, I actually became rather averse, or at least cautious, towards autism activism. I understand it has its place and people might have the best intentions, but I mostly feel misrepresented by it, and on occasions, even more aggressed than I feel by NTs and it had a very unfortunate effect on me 

    Thank you for bringing this up BTW, it's kind of difficult to bring up this controversial subject that can make some people very defensive. I appreciate your courage 
  • TemTem Citizen
    I agree with Bender, as it is not the easiest subject to discuss but one that I believe needs to be out in the open.


  • Statest16Statest16 Citizen, Mentor
    I like to consider myself the Phyllis Shlafly of the disability rights movement
  • I was only recently diagnosed with autism and so am new to all this. Feeling rather dismayed (but not entirely surprised) to learn of the politics.. I have similarly ambivalent feelings about gay activism. I'm conscious that I have benefited from the courage of past campaigners (in being able to live more freely and openly than they could), but I dislike being labelled and resent assumptions. 

    My only brush with autism activism (or rather, its effects on NTs) has been to see discussion of HFA in my workplace. It is positive that people discuss it at all. But knowledge is so limited - and if I read another reference to superpowers, I will have to go into a soundproofed room and scream. My aim is to raise awareness and increase acceptance much as I do as an openly gay man: by being myself and talking about my experience when it seems relevant.

    But perhaps this is naive and of course, there are important differences. It's more important to me that people have a better  understanding of autism. After all, I don't really need anyone to make adjustments for my homosexuality!
  • Like you the superpowers/ next stage of human development BS really irritates me.
  • HylianHylian Citizen, Mentor
    I don't see a lot of the superpowers/next stage of human development rhetoric in the ND movement, but a lot of the people I interact with are nearer to my age and they hate that crap. They think it's ableist since it implies we have to have to be savants/evolutionarily superior to even be considered to be accepted by other people. I see a lot of that just come from autistic people online and NTs who don't know better.
  • verityverity Administrator, Citizen
    edited February 21
    I think the majority of people on the spectrum do not politicise autism, however there are some feel passionately about activism,

    The ones that shout loudest tend to be the zealots. This is not unique to autism but politics in general.

    This why people on the spectrum need advocates to counter zealotry who push the one size fits all message.
  • Wise and helpful words from everyone. Thank you. 
  • SlyFoxSlyFox Citizen, Member
    Im political out of necessity from constantly being under attack. I'd rather not be. 


  • Bender said:
    I'm very much a 'political animal' , but   the 'political' aspects of ASD  can make me feel quite stressed and uncomfortable.
    I think it's because of the zealotry of some,not all, of those who self promote themselves as 'voices to be listened to' within the autistic community . There's a harshness there that makes me feel uneasy. 

    There's also an attitude of 'What suits me and what I want should be the blueprint for all'.  It's the same with  mental health groups and service users on those .

    I hear you, I share your unease. The bolded part is the one I struggle with the most: I never feel such people actually speak for me and I resent it when they claim to.

    Due to seeing so much of this, I actually became rather averse, or at least cautious, towards autism activism. I understand it has its place and people might have the best intentions, but I mostly feel misrepresented by it, and on occasions, even more aggressed than I feel by NTs and it had a very unfortunate effect on me 

    In what specific ways do you feel misrepresented?



  • Bender said:
    I'm very much a 'political animal' , but   the 'political' aspects of ASD  can make me feel quite stressed and uncomfortable.
    I think it's because of the zealotry of some,not all, of those who self promote themselves as 'voices to be listened to' within the autistic community . There's a harshness there that makes me feel uneasy. 

    There's also an attitude of 'What suits me and what I want should be the blueprint for all'.  It's the same with  mental health groups and service users on those .

    I hear you, I share your unease. The bolded part is the one I struggle with the most: I never feel such people actually speak for me and I resent it when they claim to.

    Due to seeing so much of this, I actually became rather averse, or at least cautious, towards autism activism. I understand it has its place and people might have the best intentions, but I mostly feel misrepresented by it, and on occasions, even more aggressed than I feel by NTs and it had a very unfortunate effect on me 

    In what specific ways do you feel misrepresented?

    It's usually tied to gross generalisations or tribalistic attitudes. I'm only referring to people who actually engage in such behaviours.

    verity said:

    The ones that shout loudest tend to be the zealots. This is not unique to autism but politics in general.


    Indeed, and this is the kind of thing that I had in mind.

  • SlyFoxSlyFox Citizen, Member
    autism advocacy groups tend to focus on kids. even they don't care about adults with autism. those kids grow up to be lonely excluded hurt adults no one cares about. I wish I could make a second facebook profile to post to them about how they should focus more on adults.
  • We do need to advocate for ourselves.

    But we certainly don’t need to be separate from the neurotypical world, or believe that NT’s are “the enemy.”  The idea that we must be separate is self-defeating.

    Think about Trump’s notion that the press is “the enemy of the people.”


  • Mona_PerethMona_Pereth Citizen
    edited February 25
    SlyFox said:
    autism advocacy groups tend to focus on kids. even they don't care about adults with autism. those kids grow up to be lonely excluded hurt adults no one cares about. I wish I could make a second facebook profile to post to them about how they should focus more on adults.

    Which specific advocacy groups are you talking about?

    Groups of parents of kids are naturally going to focus on kids.  They're not likely to start caring much about adults until the founding parents' kids have grown up.  Thus, at least some of the older and more established groups for parents and professionals already do concern themselves about adults as well as kids, whereas the newer parents' groups tend to be focused just on kids.

    Pestering the latter groups via Facebook isn't going to change their priorities.  I would suggest that you try to find the already-existing groups that do concern themselves with adults.

    Is there a chapter of the Autism Society in your area?
  • SlyFoxSlyFox Citizen, Member
    every autism advocacy group I've seen on facbook and eleseway is all about parents and their struggles not even really their kids struggles. 

    never heard of any autism society
  • Statest16Statest16 Citizen, Mentor
    The ASAN has done such a great job of trivializing high functioning autism and what used to be called Aspergers syndrome and minimalizing it's debilitating  effects.So that no one again with level 1 ASD will ever get taken seriously by the standards of disability and will never win a social security case again.

    Especially with the absolute youngest baby boomers being no younger than 56 now and most in the high 60's low 70's now and SSA is scared of going bankrupt will be more conservative on disability cases,and thanks to our asswipe friends at the ASAN no one will ever win a SSA disability case again.At least until all the baby boomers are dead a SSA is running a profit again.

    So thank you ASAN for trivializing the lives of high functioning autistics and now were all f*&% in the a%^&

    So neurodiversity movement you can go F yourself up your A and screw you


  • I haven't heard of that ^, but I know many people are frustrated with Autism being trivialised as a social dysfunction akin to social anxiety. 

    I've also heard how difficult it can be for people who are ASD1 to earn benefits / PIP.  

    I was lucky being L2, and my daughter was lucky (for lack of a better word?) being L1 but also having a permanent physical disease which can't be cured.   I can't believe I'm saying "lucky" in that regard, but the Tribunal for her benefits was terrifying and I doubt she would have won if she didn't have a physical disease on top of HFA. 
  • Statest16Statest16 Citizen, Mentor
    Isabella said:


    I haven't heard of that ^, but I know many people are frustrated with Autism being trivialised as a social dysfunction akin to social anxiety. 

    I've also heard how difficult it can be for people who are ASD1 to earn benefits / PIP.  

    I was lucky being L2, and my daughter was lucky (for lack of a better word?) being L1 but also having a permanent physical disease which can't be cured.   I can't believe I'm saying "lucky" in that regard, but the Tribunal for her benefits was terrifying and I doubt she would have won if she didn't have a physical disease on top of HFA. 
    The ND movement and ASAN has a lot to do with ASD 1's trivial status as far as access to services and benefits
  • HylianHylian Citizen, Mentor
    It's from my understanding that people with Asperger's and HFA who are residing in the U.S. already had limited access to benefits before the change to ASD and support levels, and that was actually part of the reason for that change.

    Support level 1 doesn't necessarily translate to HFA or Asperger's, and some people with a previous Asperger's/HFA diagnosis have found themselves getting a support level 2 diagnosis if they are reevaluated. Support levels are not functioning levels.

    Asperger's is actually a very limiting diagnosis support wise, and that's why it was done away with in the DSM5 as it doesn't actually represent the support a lot of people with AS need.
  • Statest16Statest16 Citizen, Mentor
    Hylian said:
    It's from my understanding that people with Asperger's and HFA who are residing in the U.S. already had limited access to benefits before the change to ASD and support levels, and that was actually part of the reason for that change.

    Support level 1 doesn't necessarily translate to HFA or Asperger's, and some people with a previous Asperger's/HFA diagnosis have found themselves getting a support level 2 diagnosis if they are reevaluated. Support levels are not functioning levels.

    Asperger's is actually a very limiting diagnosis support wise, and that's why it was done away with in the DSM5 as it doesn't actually represent the support a lot of people with AS need.
    Maybe so but the ASAN's trivializations haven't helped the matter
  • HylianHylian Citizen, Mentor
    Statest16 said:
    Maybe so but the ASAN's trivializations haven't helped the matter
    What trivializations are you talking about? I'm genuinely curious as I haven't heard of them doing that before. Do you have any articles/videos/etc. made by ASAN that you can share and that you think trivialize people who are support level 1? 
  • verityverity Administrator, Citizen
    edited February 25
    Austerity is also a factor in funding for disability services and support. When  parties run on a ticket of austerity and cost cutting then this will filter down and it means they will look for all sorts of creative an destructive ways to save money, Even declaring people fit to work without seeing them or knowing their history.

    There is also an encouragement of finger pointing.

    Like how people quickly forgot about the sub-prime market crash and started blaming al sort of people they felt were having it to easy or somehow weren't to their standards or preventing them from achieving.

    I have also seen the opposite problem to what you describe local authorities who wan to declare someone mental incompetent so they can scrap their education program.

    This is very multidimensional issue and it doesn't really help it any one side is oversimplifying real life, becuase it suits their supporters.
  • MagnaMagna Citizen
    Hylian said:
    Statest16 said:
    Maybe so but the ASAN's trivializations haven't helped the matter
    What trivializations are you talking about? I'm genuinely curious as I haven't heard of them doing that before. Do you have any articles/videos/etc. made by ASAN that you can share and that you think trivialize people who are support level 1? 
    I haven't heard this about ASAN either.  I'm curious.  I will say that I think ASAN is hyper-partisan in their political ideology to the exclusion of autistics that don't ascribe to their same shared political ideologies to which I find unsettling and sad for an organization that is supposed to be for all autistics rather than just those that think like they do. 
  • verityverity Administrator, Citizen
    Where I'm at, advocacy networks run by autistics are still second fiddle to large generic charities like the National Autistic Society. These may have been founded with the best of intentions, but eventually they they just become like any other generic charity, run by career charity sector workers and equivalents of CEOs, who stay a few years and move on to next. It is very much a project mentality.

    Don't get me wrong they are good general awareness, and run some employment and social services, but pretty useless for personal advocacy services like legal help on an individual basis. Apart from anything else they don't really want to take local authorities on since many of their program are funded by government schemes.

    Some of them are partisan for that reason to chase funding, or they try to. Policy tends to get tend to parties to, even if there no particular reason other then history, and part politics is tribal.  The non-partisan thing is very difficult at the best of times, we are no as a community immune from same tribalism,  the question is what make sense in terms of policy for the advocacy itself.
  • verityverity Administrator, Citizen
    edited February 25
    The reason why charities like NAS end up like this is fundraising is really about sales and marketing. So there is already a stock industry based on this.

    There is is even a term for soliciting direct-debt donations off the street, called "Chugging" or Charity Mugging. I mean who would give their bank detail to someone on the street,? But it works.... There has been some regulation since this received some backlash. Especially the pressure sales (I hate pressure sales), but really salespersons will use any techniques they can get away with, and this one reasons why you might get skewed and misleading messaging.

    To be fair I'm not saying NAS has no conscientious policy.

    I'm not sure how many people on the spectrum have an aptitude or like of this sales discipline, but I sure as hell don't.
  • Statest16 said:
    I like to consider myself the Phyllis Shlafly of the disability rights movement

    What do you mean by this?  Are you saying you are generally against the disability rights movement, in general?
  • I feel like we should advocate for each other, and encourage at least basic respect for us.  

    I’m not very “political”—but being treated with dignity is very important to me.

    The NTs should meet us halfway, and vice versa.
  • Statest16Statest16 Citizen, Mentor
    Hylian said:
    Statest16 said:
    Maybe so but the ASAN's trivializations haven't helped the matter
    What trivializations are you talking about? I'm genuinely curious as I haven't heard of them doing that before. Do you have any articles/videos/etc. made by ASAN that you can share and that you think trivialize people who are support level 1? 
    Nothing I have off hand really  but like the ND's they say autism is no different then left handedness
  • Statest16Statest16 Citizen, Mentor
    Statest16 said:
    I like to consider myself the Phyllis Shlafly of the disability rights movement

    What do you mean by this?  Are you saying you are generally against the disability rights movement, in general?
    The disability rights movement is pretty crooked I think.
  • Statest16 said:
    Statest16 said:
    I like to consider myself the Phyllis Shlafly of the disability rights movement

    What do you mean by this?  Are you saying you are generally against the disability rights movement, in general?
    The disability rights movement is pretty crooked I think.
    How? In what ways is it "crooked"?

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