Social model of ASD

Monday I had an argument with the online ASD community I attend. As an older Aspie, I can say that ASD has completely ruined my life. I cannot count the many opportunities that I missed due to ASD.

That ASD community insists that ASD is a wonderful superpower, and if anyone has a problem is because society is not accepting it. They even disagreed with the acronym ASD since "autism is not a disorder", and insisted that ASD should not be treated since it's not an illness or a disability.

It's just me, or this point of view is becoming more and more common? Why so many people are starting to subscribe to that "social model" of ASD?

  • That's why you need a metaphorical snooze button. you reschedual in your phone for an hour later if the alert goes off at a bad time.

  • I have an app for tracking eating and toileting is done largely through context relations in my routines.

    However, if routine going off means that my reminder happens at a time when I can't eat due to whatever logistical reasons, I don't tend to then remember to reschedule it.

    Same for if the routine milestones to toilet don't happen.

    Honestly, I'm miles better than I was when it first became evident this was a problem, particularly around toileting and drinking. Eating is taking more work, and I still require regular meetings with actual people around it, but hopefully I will also get to a point with that where it's something I can self manage without assistance from others.

  • sounds like the kind of thing where you could program a smart phone to tell you to go to the toilet and eat periodicly?

  • I wonder if communication style is perhaps the thing there. If I go into full on acting mode at work when presenting something, making that painful eye contact, hand gestures and tone changes, I feel I get a far different reception.

    Back in normal mode I don't make eye contact, usually too busy picking at my fingers or fiddling with something to move my hands much in time with what I'm trying to articulate and use a monotone voice. Genuinely had people (badly)  hiding their yawns while I'm in meetings. 

    If I put the same content across via emails, PowerPoint or other documents, which are read by the other person, I get the positive response.

    Conclusion is that when we communicate face to face without a lot of masking or around people who are more understanding of us, we don't fair as well. 

    There's also the chance that people instinctively notice there's a difference in us and it makes them feel uneasy and threatened?

  • Hi Cat, good point, I think some instances of my not being taken seriously have been a form of innate sexism, however I've also had women treat me a similar way, and my male partner has experienced it from other men - if you're male and dont do anything about it, you're a 'walkover' but if you react it might make them more respectful face to face, but you'll be judged as 'aggressive '. Neurotypical social /workplace structures have hierarchies that we don't usually fit into.

    I'm still working at the moment, and have been lucky in my current job, as the women I work with are absolutely lovely and I feel completely accepted by them. Most of the management are men, but they do try to support mental health and they did arrange for me to move to a quieter office when I requested adjustments for my sensory issues.

  • I've wondered the same things as Pixie, I think for me I just thought most of those things like not being taken seriously, not being respected etc were because of my gender, not autism, thats the lens I've always seen it through. I've not worked sinse being diagnosed so I don't know how an employer knowing I'm autistic would make any difference, maybe it would be less, but it could be a double whammy of autism and sexism.

    I'm still not sure of what you mean by social and work opportunities though?

  • Yeah, I have sometimes thought that it might have been a good thing that I didn't know when I was young. I was a child of the 60s, so who knows what they would have done to me. But when I was young if you were seen as 'normal ',  you were told  'don't complain, get on with it, things could be worse, you could be a starving African', etc.etc.

    Because I have high emotional empathy I've never belittled or undervalued anyone else's struggles or problems, but I tend to ignore my own  So it's useful to hear from others about their challenges and remind myself that I've had a lot to cope with.

    I certainly identify 'not being heard and respected' and that's not just in social gatherings, it's happened in most of the jobs I've had. Because I've got used to it and don't know how to change it, I don't think about it being a 'challenge ' but if you cannot get management to listen to your ideas, how are you supposed to progress in a career? Like I've said before, autism has so many nuances, and I'm still learning all the time.

  • Paradoxically, I am the one that agrees that it is a disability but I am not receiving PIP because I am "too high functioning"

  • lol I would do that but they are already scared to death about losing their benefits

  • t for other autistic people it can be disabling.

    Yeah, it is. Too bad that it conflicts with the narrative of "autism is unique and magical".

    It would be interesting to hear what opportunities you have missed due to being autistic

    Social opportunities, job opportunities, relationships, promotions at work, the chance of being heard and respected in social gatherings, many others.

    In hindsight, we were lucky that we were not diagnosed. Back then, in the '80, ASD was treated as a form of childhood schizophrenia. A psychiatrist of the eighties would have pumped up full of old-style antipsychotics. We would probably be dead or in a psych ward by now.

  • My goodness, I thought my symptoms were bad but yours are on a different level. Sorry for you.

    BTW, I would advise you to keep your blood sugar level checked. Eating like this is a good way to get diabetes. 

  • well you could toss a wrench into that and tell them if its not a disorder they should cancel their pip then, and save their words and send it to the jobcenter and have the jobcenter see that they have no issues and dont need pip lol

  • A lot of it seems like the assimilation of autism into the existing structure, as the work done on autism in recent decades has been neurological in nature, and the society structure depends on psychology.

    If you gaslight the community into accepting that it’s not necessary to consider the cause of behaviour/development/distress as it relates to daily-living and mobility, then they will be able to deal with the liability of autism in the least costly and divergent way, a possible is removing the insistence that autism is a disability and that there is a risk of harm beyond the normal consideration.

    If you enable an ableist mindset from within the autistic community, then it will dismantle itself from the inside, it’s much easier to do as the pioneering close-carers (now gatekeepers) of the 90s are getting older and autism is receiving more-exposure. This is a war of rhetoric, it requires a social-emotive prowess to win, but the enemy doesn’t have an socio-emotive impairment.

  • if there is always a toilet near by it doesn't matter if you need one on short notice. if you can activly monotor your food intake you can manage it.

    I think you misunderstood the toilet issue. It's not that I need one at short notice. It's that I don't notice I need it and it backs up and gets infected. 

    And I can't monitor my food intake, that's the problem. If things in my day change even a little bit (which I think we can both agree is always going to be unavoidable) I stop eating. Also when I do eat because I can't tell when I'm full I overeat until I'm nauseous/refluxing/sometimes actually sick. My weight is all over the place as a result of these things

    And I have difficulty identifying illness and injury as a result of the hyposensitivities. 

  • I would say it's extremely unlikely that a neurotypical person would have found themselves in my exact situation.

    Autism is context, not an excuse, but it does play a big part.

  • I also have a lot of challenges that don't fit the social model of disability. My introception is nearly non existent, I can't really tell when to eat, drink, or go to the toilet. These have and do endanger my health. Various aspects of my other sensory hyper and hyposentsitivities also endanger my health at times. These have nothing to do with the societal setting, and everything to do with the fact that there is a disorder in my neurological wiring that isn't managing to process these signals appropriately.

    I mean the social model of disability can and has been applied to thinks like being wheelchair bound etc. if there is always a toilet near by it doesn't matter if you need one on short notice. if you can activly monotor your food intake you can manage it. If sociaty provides you with the right tools / enviroment these issues can be managed.

    That's the social model. The social model says 'yes it might be nice to have legs to use steps ... but the issue here is sociaties lack of ramps for people in wheelchairs.'

  • I have a high IQ, have over achieved in my career, have read every self help book going, have studied how people interact with each other and throughout my life people have told me I'm "nice" and "likeable".

    I have tried, for decades, but I simply cannot make friends or have relationships. It is as if other people literally have a sense, telepathy or something, that I don't possess.

    So being told, in effect, that there's nothing wrong with me and I'm not trying hard enough, does not sit well with me.

  • As we are discussing this again, I will share my point of view again. I am tired, so it may be more blunt than normal. 

    I am what many would refer to as a 'high functioning autistic', I'm at a competitive university, and I'm succeeding. Most of the reason I'm succeeding is that the uni is putting a lot of resources into helping me access the course (single room for field trips, mentor, extra sessions with support staff, a lot of technology to help me access lectures and still more). However I can't use the tube independently at all, I require assistance when flying, so if I don't have a companion I need to book the professional assistance (well worth it in my opinion), and I require daily prompting to maintain basic hygiene. If you encountered me on public transport or in many non academic settings you would quite possibly not believe that I manage university to the degree I do. And even within academic settings, where autistic traits are not hard to find, I am still bad enough at masking that it is fairly obvious after spending very little time with me, that my wiring is a little off. 

    I also have a lot of challenges that don't fit the social model of disability. My introception is nearly non existent, I can't really tell when to eat, drink, or go to the toilet. These have and do endanger my health. Various aspects of my other sensory hyper and hyposentsitivities also endanger my health at times. These have nothing to do with the societal setting, and everything to do with the fact that there is a disorder in my neurological wiring that isn't managing to process these signals appropriately.

    Quite frankly, writing out an enormous list of my issues and things that helps is exhausting for me to do, and exhausting for the other person to read. ASD summarises most of them, and having a single piece of paper to use when I need to get help with something, is part of the reason I got a diagnosis in the first place.

    Neither the medical model nor the social model is perfect. The social model will never be perfect because if I am sitting in the same room as an autistic person who benefits from coloured lights, who takes priority? Me who finds them overwhelming, or they who find them calming.

    I have issues with the 'neurodivergent' premise because it can sometimes be used to excessively group people past common factors (e.g. what is the advice for one form of neurodivergence can sometimes be actively harmful for others under the same umbrella, and I find many people who use it are not referring to the whole umbrella, but fail to appropriately identify this as they are arguing for the lack of the labels that they need to use for clarity and safety). And I think that the neurodiversity paradigm has similar if not yet more problems to the social model and neurodivergent model.

    Feel free to disagree with me on any and all of these, other than my lived experience. I am sometimes prepared to debate it further, but I make no promises. It is exam season and my spoons are low.

  • I would say autism has massively impacted my life and not in a good way, especially over the last year where I messed up to such a massive extent that a non-autistic person would not have done.

    I know neurotypicals who have messed up massively, sometimes in a serial way that makes you realise they are either just rubbish at life or are tring to self sabotage.

    The point is - autism isn't the root cause of all your problems. It is an explanation why you experience things in a certain way and it is down to you to learn to adapt and find the right balance in life that is sustainable and still allows you to be human and mess up from time to time.

    Owning out mistakes and learning from them is a part of the human condition. We have all messed up royally from time to time (myself included - sometimes I wonder what the heck I was thinking - but it wasn't down to just autism. It was me being stupid, being an a-hole or any number of things that affect all humans.

    Accepting this and learning to do better is what defines us as a good person and accepting that to err is human. To really, really mess up requires a politician.

  • just a difference - but I'm very aware that for other autistic people it can be disabling. It's probably tempting for society to see us as a group who all have the same needs and issues, because for most "conditions" that is the case, but our needs can differ - we're all unique.

    Absolutely! I strongly reject the pathology paradigm (disorder narrative) in favour of the neurodiversity paradigm and I assume you do too?