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I do get the impression that some like what are seen as the 'positive ' parts of being an autistic person enough to want the dx, but are vehemently against any suggestion they're disabled.
I'm not in that category. I have absolutely no doubt that I'm disabled. I' m not this high achieving autistic superperson. Not because I'm totally stupid. High range IQ test scores show that that isn't true. However there is a significant adaptive functioning < IQ gap.


Comments

  • Statest16Statest16 Citizen, Mentor
    I would definitely say I'm disabled for sure I get federal benefits here.
  • verityverity Administrator, Citizen
    edited June 2022
    I always found it odd some are so cut and dry one way or another when viewing a whole groups. I think it is politically convenient for various interest group to view it one way or the other.

    In reality though if you have met one other person on spectrum you have met one other person on the spectrum.  I have met folk of various level of functioning, though I try not to assume. Disability and functioning is complex an multidimensional. There is a point about adaptability. You can adapt an interface of UX to make it more accessible but sometime a complete different  UX/inputs/actuators/sensors would have been a better solution, so there is an argument those individual are living in a world not designed for them.

    In reality there are folk on the spectrum that wouldn't be able to use this forum, even if I made it as adaptive as I could.

    The crux of the ableist argument is that, but you have to be realistic about what is currently possible, while pushing the boundaries.

    A lot of activism uses  the strategy of hard, inflexible beliefs, in order push the boundaries of what is possible. That sometimes works even f it is not a realistic position, but it does so at the cost of alienating a lot of people and worse leaving folk isolated. 
  • verityverity Administrator, Citizen
    Someone with motor and communication difficulties can be viewed as as intellectually disabled, as that is how they can appear to most people.
  • I do wonder why some high achieving people feel the need to go through the process of being assessed. Even before the assessment they're often cherry picking what parts of being an autistic person they want  to own up to having.

    I can't identify at all  with the quite  often self  appointed 'autistic elite' or at the other end level 3 people needing 24x7 x 365 care and support.  Perhaps that's because I seldom hear 'autistic elite' types  talking about things they struggle with.

    I on the other hand, have been described as 'often gifted','occasionally a genius', but struggle with basic daily tasks the average NT person takes in their stride.
  • verityverity Administrator, Citizen
    I do wonder why some high achieving people feel the need to go through the process of being assessed. Even before the assessment they're often cherry picking what parts of being an autistic person they want  to own up to having.

    Well 'high functioning' people function in terms of being able look after themselves, and carry out every day tasks. That doesn't mean they don't have social difficulties or even other difficulties.

    Also you can be high functioning and still be unable to work the term is relative, as there are also secondary problems, like mental health problems.

  • Officially dxed: ASD,schizo-affective/schizophrenia

    Very probable: dyspraxia(mentioned by pdoc and in letter re ASD assessment),severe social anxiety(secondary to the sz/sz-a)  Total aphantasia( not a disability, but I have it)

    probable:dysgraphia

    physical: atrial fibrillation , mild scoliosis, lower backache, low vitamin d,

    cognitive: deficits - EF organising and planning, mental rotation, spatial,visual memory

    relative strengths- numerical, non mental rotation/spatial based fluid intelligence

    Cognitive strength: verbal. Several scores listed on high IQ sites. I do a lot of timed and untimed  high range tests alongside playbuzz 'for fun' ones. The average person will get 10-15%  of 'high range' questions right  I've  got 73%verbal right so far, 52% numerical and 36 % non-verbal.

    I'm not good with ADLs. My stepfamily helps me out with those.
  • verityverity Administrator, Citizen
    I personally find my aphantasia is a disability. Maybe combined with executive dysfunction. If you do not have qualitative representation of thought you might not have that feedback loop that is the working memory. The way people understand thoughts is in how they are represented by their perception, and how they are represented gets plugged back into the process I understand. It limits your processing capability, in my view. Others may some of working memory function that is not represented by their concious perception . I do not have much of that, I have to use workarounds.

    So I disagree with the experts on this from my personal experience.
  • When I said it was not a disability I was going by what many researchers and those with it have said. 

    Here's an example of how it affects me. Via human benchmark



  • HylianHylian Citizen, Mentor
    I used to not know if I could be considered "disabled" in any way, but after starting a job and going out more I've noticed that I really cannot do or handle things that most other people can, and people certainly treat me like they think I'm "delayed". I've become more frustrated at having autism due to it, though I still don't hate having it, just wish that I got better support as a kid so I could function better.
  • Hylian said:
     just wish that I got better support as a kid so I could function better.
    As someone who went to school from 1961-1975, when there was significantly less support than there is now, I totally agree with you. There was nothing back then for a child that nowadays would be regarded as 2e.

  • Mona_PerethMona_Pereth Citizen
    edited June 2022

    I do get the impression that some like what are seen as the 'positive ' parts of being an autistic person enough to want the dx, but are vehemently against any suggestion they're disabled.

    Do you come across this often?  If so, where?

    I've seen this only very rarely, at least in the online venues I hang out in.

    In my experience, many autistic people (including myself) do reject the idea that autism per se is an illness that should be "cured."  But that's NOT the same thing as denying that we are disabled.  Many of us recognize that our autism entails disability -- as well as various positive aspects --but we want accommodations rather than a "cure."

  • 'Autistic Twitter'. Those types really put me off. Seem to combine doing great things while proclaiming they did it with the worst sensory or other symptoms you could ever imagine.There's a lot of mutual backslapping and reciprocal 'shout outs' to follow the 'right kind'(my term) of autistic people. They're rather elitist.

    I don't fit that  category nor do I fit the severely autistic person  with an IQ < 70 category.As well as ASD I have an SMI dx that currently swings between schizophrenia and schizo-affective. 

    I have the all too typical, but not universal adaptive functioning < IQ  going on. Hence   the below, but I struggle with ADLs that the average person takes in their stride. Without the support I get from (s) daughter etc I'd struggle to maintain  the basic but reasonably healthy level of independent living I have now.

    As for a 'cure' I'm at a basic level against '' 'cure' without consent'' but that raises the thorny issue  of ability to give or refuse that consent. Ideally I'd like the negative aspects eliminated while keeping,in my case, the few good things about being an autistic person. I don't think that level of fine tuning is currently available. There's, IMO, a small but very vocal group of people promoting the nonsensical idea that ASD is not a disability or illness

  • Teach51Teach51 Citizen
    edited June 2022
    Well done you firemonkey, being highly gifted is a rare and wonderful thing.
    My friend is also extremely intelligent (HFA) and extremely competent in many things and yet other simple things are terribly difficult. It seems to be  really frustrating for him and very  baffling for me.
  • Teach51 said:
    Well done you firemonkey, being highly gifted is a rare and wonderful thing.
    my friend is also extremely intelligent (HFA) and extremely competent in many things and yet other simple things are terribly difficult. It seems to be  really frustrating for him and very  baffling for me.

    Thanks. It's actually quite baffling. One of those things where my inquisitive mind would like an answer. Those were both tests of fluid intelligence. I did very well on them. However on a test of fluid intelligence involving mental rotation  I drop down to borderline/low average level.  I did consider that the latter might be due to aphantasia ,and having poor visual memory, but I've come across more than a few aphants who are good/very good at mental rotation tests.


    Tying it in with being disabled- If I had no stepfamily near to help with things I'd struggle a lot. I think it reduces my ability to cope well with more than a few tasks.

    My best scores are with verbal testts
  • pangolinpangolin New Member, Member
    verity said:
    A lot of activism uses  the strategy of hard, inflexible beliefs, in order push the boundaries of what is possible. That sometimes works even f it is not a realistic position, but it does so at the cost of alienating a lot of people and worse leaving folk isolated. 

    This exact statement echoes one of the major issues with the neurodiversity movement. Discussions I've engaged in or read about neurodiversity itself or within neurodiversity-aligned communities have been invalidating to my lived experiences of disability and the lived experiences of Level 2/3 autistic people. Efforts I've made to consolidate these issues have been met with resistance that gives the impression that the movement intends to ignore or erase people like me, which I have obviously found to be heartbreaking and disappointing.

    Splinter communities have been cropping up as of late that are dedicated to Level 2/3 autistic people and advocacy to include them has been increasing. Although the social model of disability has been beneficial to improving the outcomes of autistic livelihoods I believe it suffers from the same limitations as its medical predecessor. Healthcare, activism and discussions about autism should be informed under a hybrid psychosocial model which acknowledges the societal issues that autistic people face while acknowledging the tangible, inherent impacts that having an autistic brain has on a person's life.

    Alternatively, it could be argued that the concepts behind the social model of disability have been deeply warped and misinterpreted to the extent that we see on mainstream social media platforms. I would further argue that this is a radical branch of the social model that is designed to only benefit autistic people with milder presentations whether it be Asperger's syndrome, Level 1 Autism Spectrum Disorder or a subclinical presentation that does not fulfill the criteria for a formal diagnosis. As generalisations are, this obviously does not apply to every autistic person who falls under the groups mentioned prior but it is more common for moderate-to-severe autistic people to have a significant reliance on the medical system. The extremely narrow-minded interpretation of the social model outright erases any concepts associated with a concept of disability which can lead to misguided activism that creates deeply devastating implications for the continuity of autistic healthcare. Whether these behaviours come from ignorance, superiority (dubbed "aspie supremacy/superiority" in relevant discussions) or malice, it is an issue that needs to be addressed within the community to heal the growing divide between diverse support needs.

    (...) As for a 'cure' I'm at a basic level against '' 'cure' without consent'' but that raises the thorny issue  of ability to give or refuse that consent. (...)

    I am pro-cure in principle but anti-cure in practice. Witnessing the development of artificial intelligence and large language models in real-time has given me the consensus that our present society will not be capable of managing the development of cures for autism without gross negligence and a significant breach of ethics. As long as the human race continues to treat developing technologies like children's toys, we will continue to have a history filled with failures and unnecessary sacrifices.
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