Published on 12, July, 2020
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?
The social model of disability is preferable to the medical model, because it does not assume that certain people cannot do things. It aims for such things as enabling autistic children to have educational opportunities and learning support, and for autistic adults to have appropriate adjustments if they work, to help enable autistic people reach their potential.
It would be interesting to hear what opportunities you have missed due to being autistic. I'm an older person too - I didn't discover I was on the spectrum until I was in my fifties - and I didn't learn much at all at school, because the way of teaching was not tailored to my needs. I've learned more from online and distance learning as an adult. I have asked for and been granted adjustments to my working environment in my current job, which has helped me.
However, the social model of disability does not take away all struggles. Just as a wheelchair user can be enabled to be more independent by things like ramps in public places and specially designed bathrooms, but there are still some things they will not be able to do, so autistic people may achieve more through a social model of disability in education and work, but can still struggle with other issues.
I believe that the ASD community you mention is trying to foster a positive self image for autistic people. That's a good thing, but it's not a "super power". Yes, we can be very good at some things, like hyper focus and attention to detail, or have creative skills, but non autistic people have other things that they are good at. It's not a competition about which type of person is best. Everyone has things they are good at and things they struggle with.
I personally do not see my autism as a condition or a disability - 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.
I really hate the idea of autism as some kind of superpower, it's not like I can defy gravity or walk on water. I have a very good memory, I trained my memory, it's not a super power it's hard work and learning techniques that teach you how to increase memory. I'm a good cook, some would say an excellent cook, but so are all the contesants on Masterchef and Bake Off, it's not rocket science. I feel its patronising to say autism is a superpower, and I wonder who decided it was?
Being an older person who wasn't diagnosed until later in life, the amount of recognition there is around now is still surprising to me. But, I sometimes wonder at the quality of the services provided to autstic people, because the ones I've encountered are pretty poor, so poor that I think they're a waste of public money. It's like a group of ultra NT's have had a brain storming session and decided what autism is and what needs to be DONE about helping people with it, whilst totally missing the point that we're not all the same, it feels like a box ticking exerise rather than one aimed at meeting the needs of the community they're supposed to be serving.
I wouldn't say that Autism has impeded everything in my life, there are many things that have done that and generally I'm in a good place. But then I'm good at standing up for myself and challenge people who try to put me down or patronise me for all sorts of reasons, my response to trades people asking if they can speak to my husband is 'can I speak to your wife?' I think you can be autistic and problems that are nothing to do with autism or societies acceptance of it, if you have problems going out or going to a certain place because you were violently mugged there, that's nothing to do with autism or societies acceptance of it, it's to do with people being criminal and others being criminally stupid.
There's always going to be wildly different viewpoints on the matter, which is why I tend to steer clear of the debates. It was far too frustrating to keep up with.
"Don't call autism a disorder... don't call it a disability... don't call it a condition". 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've often thought about the idea of being completely outside society and if I'd be 100 percent ok without it (ie, is society the issue)
I think it's fair to say a lot of my problems would go away. But not all, there's all the sensitivity issues and everything else.
The key for me is that a lot of the time I want solitude and other times I want to be part of it, I just wish it was easier, a lot easier!
Because lots of high functioning (high iq) ASD people are being diagnosed. far more than ever before. And with better resionable adjustments in school and main streeming more are leaving school with qualifications than ever before. So they've realised it was never them that stoped them suceeding. it was the world. Before their were still high functioing autistic people. But they were shuveled into special schools where they had no suport to gain qualifications and most of them self labeled them selves as stupid.
When you have a PhD etc but are compleatly socially disfunctional it's far easier to belive it is sociaty and not you that has the problem.
I think it depends on personal experience. Every experience of autism is going to be very different, some people may see it as a gift and focus on the positives and the way it helps them in their life.
From my experience post-diagnosis, I'm still coming to terms with being diagnosed later in life. I'm currently feeling similar to you that I have missed out on a lot of opportunities due to being autistic. Of course, when I was younger I wouldn't have realised that this was the case, like I do now.
In my opinion, being open about being autistic and it being a disability has been of more help to me than focusing on it as a "superpower." It's support I'm not sure I would have been able to access if I discussed the positives of being autistic, and instead how being autistic hinders me day-to-day.
Consider, if you were in a band of hunter-gatherers of 30 or 40 people, people who you are mostly related to and that you know very well and who know you. Most of your time is spent however you want to spend it, you hunt, gather plantstuff, make tools, make clothing etc. when you need to, not otherwise. There is no 9 to 5 work, there is no such thing as work. In that situation, would your autism be any sort of disability? If the answer is no, then the 'societal model' of autism as a disability is true for you.
Amerantin (former member) said:o many aspects of autism have nothing to do with how other people treat us and everything to do with how our nervous systems are wired.
Amen
I think I understand where you're coming from. On the one hand, I think it's good to recognize that we with ASD are good the way we are. There's nothing wrong with recognizing the gifts we have because of our non-neurotypical brains. On the other hand, to be honest, I sometimes find it annoying when ASD is glorified by some in the ASD community as a fun lifestyle and the problem is always the others, the neurotypicals. The D for disorder bothers me a bit too, but it seems to remain necessary to categorize autism as a disorder when social/medical or psychiatric help is needed. And, let's be honest, we do have to make use of this help from time to time. We shouldn't have to be ashamed of this and we should be granted this help without being humiliated. I think that's important. But to claim that I am a superior being just because I'm autistic: I don't think that's okay. Maybe it's just a kind of protective attitude that some people adopt because they have experienced so much discrimination. Maybe it builds them up when they say to themselves: I have a superpower that makes me better than everyone who has bullied me. When I think about it, I can understand how someone could have that attitude, and it's possible that I've behaved that way myself. But we live in a society, we're not eremites. So it's better not to act like some kind of superior being just because it makes you feel better.
Yellow tree 118 said:To me autism is a very serious neurodegenerative disease. I will always see it that way.
This is factually wrong - you catch a disease whereas autism is a genetic condition which causes the brain to develop differently to "normal" people.
Calling it by a different name does not make it right, but I guess this may be a way of you trying to blame it for the fact you have suffered from it.
Yellow tree 118 said:Saying autism is incurable is kind of a buzz kill for me.
I get this, but it changes nothing. Finding an approach that can get society on board with accepting us would be the best place to focus your energies.
Yellow tree 118 said:you could have all the autism acceptance in the world and that kid would still probably never speak without medical intervention.
By medical I assume you mean therapy.
Yes, it is an unfortunate fact and why it is important that society is willing to put the resources in place to make this intervention easily available, affordable and destigmatised.
The battle to get autism understood by society in general is likely to take a generation or more, much like the acceptance of the LGB community and now the T and other letters. It is a long, slow process and we need to have some positivity to do it rather than rage and cancellation used as weapons.
The sooner we start to understand autism properly and disseminate the knowledge and acceptance ethos, the sooner things will improve.
It does suck that it probably won't be widespread in out lifetime though.
I honestly believe people with that viewpoint are either incredibly mildly affected by autism or are in denial about their situation - unable to accept they there is something imperfect about themselves.
So many aspects of autism have nothing to do with how other people treat us and everything to do with how our nervous systems are wired.
I’m not really sure why everyone is following this new trend of sweeping autism under the carpet. Which is essentially what they are doing whether they realise it or not. I do not sweep my autism under the carpet like it’s all good and everyone is fine let’s all shake hands and oh look here come the teletubbies too. Isn’t life swell!!! Nah I don’t do that. To me autism is a very serious neurodegenerative disease. I will always see it that way. But seeing it this way isnt a bad thing. Quite the opposite, instead I want to see something done to help autistic people and their families. Saying autism is incurable is kind of a buzz kill for me. I mean are you just going to go up to some mum of an autistic child who can’t speak and has to wear restrictive clothing to prevent them hitting people. And say ‘oh sorry no cure for that, you’ve got to be more accepting!! It’s all your fault, you must be parenting wrong or not be accepting enough!!’. It makes no sense. I mean you could have all the autism acceptance in the world and that kid would still probably never speak without medical intervention.