"Autism is a difference not a disability"

[MJCadman]

Do you agree!

I personally don't. I hate it.

I think it minimises how hard life is.

Also dislike "Autism is my Superpower, what's yours"?

I don't want to normalise autism. I want people to understand it and make allowances.

I know this isn't what everyone else wants. This is the Neurodiverse MN board. I'm not talking about having kids with it. My daughter has it and of course I want her to be seen like the rest of her friends. I just mean for me personally I do want people to know I think differently. I can't have it both ways. One way for me and one for my child.

Thats a really interesting take. I dont see it as toxic positivity - more a reframe. I focus on what Im good and and what Im not. I make sure i limit what im bad at, or have adjustments, and I dont diss the things im good at anymore. I do the same with my children (also autistic). For example, I used to think I was weird and it was a problem that I would deep dive into subjects/interests and completely lose myself in them for days, weeks on end. It would affect eating, sleeping cooking, daily chores because I would be so engrossed. With adjustments (timers and reminders) I can do both and allow myself the freedom to go into the interest, without starving or ignoring the basics. So the hyperfocus has now gone from something negative to something positive. It helps that I have based my career around it too.

Is there any argument to say that all those stating they or their loved ones are disabled and only have struggles, have maybe not found yet the appropriate scaffolding and support? Maybe there is the right environment/adjustments for everyone but they havent been found yet? Maybe not. I dont want that to come off as dismissive of peoples needs just as a discussion point.

Im thinking here about the deaf community for example, who often do not see loss of hearing as a disability and will not give their babies/children surgery for this reason.

Someone up thread talked about a 'low-functioning' man with autism who was non-verbal but he could communicate very well in other ways.

Maybe people could see these things as toxic positivity but maybe its reframing and focussing on what people can do. For me, not being able to drive places and direct myself and getting easily lost, I struggle to reframe, but we cant be good at everything and whilst those practical things are beyond me I can do some quite amazing things academically, and I am very very good with empathising with others. My adult daughter who also has Autism, struggles with reading and writing (severely dyslexic), but is a remarkable animator and has been from a young age. Maybe her brain is so artistic and visual that she had little room for the basics of reading and writing. She thinks in pictures. Her world is pretty amazing and I can only wish to be so creative.

Im probably rambling and not making my sense. Just my thoughts fwiw...

I had a social worker tell me that in her professional opinion I didn't have autism just low self esteem. I asked her what part of her profession qualified her to overturn a diagnosis made by a team of medical experts at the hospital. She wouldn't answer. Silly woman.

You've both basically described the social model of disability.

Thats outrageous. Im a social worker - but I have done extra qualifications in autism, and work in that field of social work. Thats so unprofessional. Im studying now to do assessments, and tbh you would have to spend a lot of clinical time with someone to know for sure. And Im saying that as a ND person with children on the spectrum and working with many people who are ND. You simply cant just 'tell'. Silly irresponsible woman.

Oh and when I worked in childrens services other social workers had little to zero knowledge about autism. In our course we had one morning workshop on it - which was horrendously out of date as she was using Aspergers as a diagnostic term, and high functioning etc, and talking nonsense about it, and she had been hired as 'the expert' to teach us. I was pretty miffed that day.

You are well rid of him, if that's his attitude.

Here's a radical idea for you: autism has a spiky profile and because of that some people need more support than others. The support has to be tailored to what that person actually needs, without assumptions being made that a deficiency in function X means a deficiency in function Y.

I can't find the account by the SALT who was told by the ABA "therapist" not to bother getting an AAC for a non-verbal autistic child because he wasn't intelligent enough to use it, got one for him anyway, gave him a training session in how to use it, and days later got a complaint from the ABAbuser that the child had used his AAC to tell her to "leave him alone" and "f off" and demanding to know why the SALT had programmed those terms in for him. The SALT's reply went something like: I didn't put those terms in, my client must have done it himself, and I'm proud of him both for figuring out how to do so and expressing his personal boundaries clearly.

I wish I could find the source for that because it demonstrates so clearly how a lack of the ability to use spoken words was automatically extrapolated into a lack of intelligence by a so-called expert. This kind of abuse is exactly what the "spikey profile" argument exists to stop.

There's times when the social model is the most helpful model and times when the medical model is the most helpful model.

Bright light causing sensory overload? The solution looks like "Can we get a dimmer switch fitted to the office lights? Access For Work might fund it." Social model.

Chronic pain? Cancer? Medical model.

If physicists can pretend that light is a wave when it suits them and pretend that it's a particle when it suits them, we can use the most appropriate disability theory for what we need.

I think it’s just a silly and insulting theory. That it’s the world that’s ableist not that someone is struggling with disability. The light aspect and other such things are just common sense, and should be applied if needed rather than grouped under such a silly minimising banner of oh it’s the world that’s ableist.

What is masc?

I think the world now is causing greater disability for those with ASD. Everywhere is noisy 24/7. People barging about getting angry/raucous in the street/supermarket/traffic etc. For me, it’s all too much to deal with now in a way I never struggled before. I’m getting more and more isolated.

@MaidOfAle I have a kid like that. He's still young so may end up speaking and is proverbial rather than non verbal. He is significantly behind though and as he doesn't speak he's assumed to be unintelligent. But he follows instructions and clearly understands what I'm saying. He was selecting apps on the iPad and changing screen brightness and volume. He has a few basic Makaton signs but didn't seem interested in communicating other than screaming at me or leading me by the hand. So I started phonics apps with him and independently he finds pictures on there of fruit he wants me to give him and points at it moaning at me in his way- still early days but he's communicating and I'm kind of scared how fast he's picking up phonics reading and tricky words he's even started trying to draw them and it's kinda legible. He's not school age yet and it looks like he will start school unable to speak but reading.

It's not a bloody superpower. It's shit parenting a kid with autism and it's shit for the kid being autistic. It makes it very hard to cope in the work place, and despite all the 'we're a disability friendly employer' mantra; fuck are they.
Don't get me started on 'I have a touch of autism too' or 'oh it's my autism streak' said with a tinkly little laugh...no you're just twat... I've yet to meet someone formally diagnosed with autism to make light of it, because it's very much a disability and makes an already crappy life crappier.
Rant over.

Lol no I didn't mean to add my name. I was so rushed and didn't read it through, but it is ok. I haven't even read my own report in full yet lol.

I am surprised by how many replies has posted since I posted last. I hope we haven't gone lawless. You know this is covered in law so I wonder if have gone lawless, not me. I will stop by tomorrow to enjoy and read the rest of the posts. We are all clearly with a strong interest as well, kudos. Thumbs up.

DDs autism is a difference 99% of the time.

But then there's that meager 1% that disables her in the truest sense of the word and the child that can do ridiculously hard maths and is academically gifted in all areas suddenly can't make a simple decision like "Would you like juice or water with dinner?" That stops her being able to talk and shuts down and can't stand to sit in a room with other people being quiet. And it's really fucking shit for her but you know that other 99% makes it ok 🙄

It's a disability as the world is not catered to autistic people. Therefore you're always at a disadvantage, always fighting to find a way to make life work in a world that isn't designed for you, always disabled.

I think there is an argument for it being both a disability and a difference. If everyone were autistic then many of us who are disabled by our differences now would not feel disabled. I'm the old fashioned Asperger's and that might fit me. But I'm disabled in this world as it's so difficult on me. But I don't call myself disabled because I look at other family members who cannot communicate or have such extreme sensory struggles they can't attend school and have tried to kill them selves as 12 kids in a class is too overwhelming. I worry for my son, I'm not sure he will ever live independently he will always have real struggles and need support. I on the other hand can manage working full time if I don't do anything social, I function pay my way in society and support 'lower functioning' family but the cost of that is I nap every chance I get and avoid all people places and things that are even the slightest difficult for me. Is that disabled? Maybe I don't like to claim that as I can function enough and I'm not so challenged as others. It's certainly a difference of not a disability. It's certainly not a fucking super power I HATE when people say that. So I have deep knowledge of specific things, maybe there is a niche for some of us to do what we love for a living but I'm too crippled by my struggles to make used of my high skills and knowledge in my special interests.
I'm adhd too and that could be a super power with the hyper focus but then you get crippling unfocus so it's a super power you cannot direct.

Sometimes it is the world that's ableist, that's the point. If someone in a wheelchair turns up to a building that has level access so they can roll straight in, but the following day turns up to a building that has steps in front so they can't get in, that person has been impaired because the designers of the second building were ableist in assuming that everyone has working legs.

The light aspect and other such things are just common sense

I think it's easy to mistake "reasonable adjustments" such as level access and having dimmer switches as "common sense" when you're too young to really remember the world prior to disability discrimination legislation mandating reasonable adjustments, because service providers really weren't treating them as "common sense" back then. (They still don't always now: remember the building manager at my employers whining about the cost of the one blind I needed in an email to my line manager, which my line manager then forwarded to me to ask if I had any medical documentation I could submit to basically justify the cost. It was £300, in an organisation that turns over millions per year. I shit not.)

But that same person having chronic pain, that's not something that the world can accommodate. That's why both models have their place.

should be applied if needed

So, I face two burdens from being autistic:

1. The effect of autism on me, so struggling with social stuff, photophobia, etc.
2. Having to be "that person" and ask for adjustments. Having to fight to get what I need. Having to suffer in bright light, loud noise, etc whilst I wait for what I need to be provisioned.

Saying that the world is ableist is partly about tackling that second burden.

Let's go back to that wheelchair user. Level access "applied if needed" looks like having to go to the back entrance and ring a doorbell and wait in the rain for someone to open the door whilst everyone else walks up the steps and in through the front door. It looks like having to phone ahead for assistance because the only lift is a goods lift and a staff member has to operate it for you. It looks like having to have platform staff get a ramp to help you off and on a train and having to find those platform staff in time for your train and hope that they aren't busy when your train arrives. "Applied if needed" comes with a burden of having to ask. In a society that shames disabled people for existing in the first place, having to ask for an adjustment isn't a psychologically-neutral experience, for the disabled person or for the service provider's staff. There's always a feeling that you are a nuisance, in the way, inconvenient, or an attention-seeker. You end up apologising for asking for your own civil rights to be upheld.

It's not minimising nor is it insulting to recognise that the world is ableist, as long as we recognise that there is a medical aspect to disability that should not be downplayed.

It’s insulting and minimising to me.

The increasing problem is thinking of ASD as any sort of condition at all. The spectrum encompasses every part of human behaviour to a greater or lesser extent. How would a society purely of ASD people look different to the huge variations of NT society?
Someone up post said she couldn't imagine being NT and thinking slowly. Which is fine but not everyone with ASD thinks quickly either ( or maybe not outside their specific interest). Couples where both have ASD divorce. I know families where both parents and children are ND and they don't rub along any better. Humans, even differently wired ones are still unique humans. We are all the centre of our own universes and no one feels they 100% fit.

I'd be genuinely interested to know what a ND world looks like that would be an improvement in reality.

Actually I could imagine schools would be max of 4 to a class maybe. So you'd have absolutely tons of micro schools with lots of outside space.

I find it the opposite. It helps me stop feeling like I'm to blame for all the stuff I struggle with, because I didn't ask for this, but also gives me hope that life can be better for me because the world can do better.

That hope has already born fruit: my desk is now in an office with dimmable lights because my employer has started fitting dimmable lights as standard when refitting buildings.

What's minimising and offensive is the "well I cope, so you should too" and other messaging that associates not needing adjustments as somehow virtuous, which I get a lot, including, sadly, from other autistic people.

okay I’m glad it works for you. I would be appalled if my social worker or dr etc started going on about it, I would find it awful and gross and minimising. I agree with you with well I cope so you should too being horrid

If someone tried to pretend that 100% of why autism is disabling was "the world being ableist", I would certainly find that offensive and minimising because it can't all be magicked away with enough adjustments and that person would be pretending that it could be. The sun doesn't come with a dimmer switch and crying babies can't be adjusted away.

"The increasing problem is thinking of ASD as any sort of condition at all. The spectrum encompasses every part of human behaviour to a greater or lesser extent. "

This is functionally no different to the oft-repeated "Everybody's a bit autistic", and displays a complete misunderstanding of a) what the autism spectrum is, and b) the diagnostic criteria.

Please stop doing that.