Why are accommodations for autistic people often seen as unfair?

[YourPoisedFinch]

In my last job, I received some accommodations and explained them to colleagues when they asked why I was coming in late. Instead of understanding, they accused me of fraud and faking my condition to get special treatment. This isn’t just my experience—many people with mental health conditions and other invisible disabilities face similar challenges. They’re either not believed and resented for receiving accommodations or believed but then negatively stereotyped.

The first one wasn't because it was said two days ago before you even joined the thread. That is to make the point that there isn't any 'just now' going on here.

The second post was a direct response to you saying I was abusing the priority boarding queue. It was an attempt to explain reasonably why I had an issue with the idea that if you can cope without an adaptation you're abusing the process by using the adaptation.

What you have just done is quoted where you back tracked. I'll post a screenshot of what you wrote originally but suspect it'll get deleted.

You specifically wrote that you could cope without it then wrote thst you required it as you struggle with change and didn't want to be seen as arsey/ an arse. You wrote the above post when I pointed out that you didn't need to use the preboarding but chose to for ease.

I'm torn in responding to you because I don't think conversation or debate should be shut down by threat of suicide but I also don't want to contribute to your mh issues.

I have actually tried to stay on Subject with you even though you were accusing me of writing things that I hadn't/ projecting/ reading into what I'd written as personal to you when writing generally. You've repeatedly asked about MS because it suits you, you know about it. I've never raised MS or compared it.

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im not filling in the blanks, i've been part of this thread since the beginning and have read the poster in questions replies from prior to your tit for tat with them over it, and before you joined the thread with your opinion on the matter, so i KNOW thats how their autism affects them.

Perhaps you should brush up on your comprehension skills.

My comprehension skills are fine thanks, I don't need to question others capabities to asert mine. I'm secure in that.

You equated your sons autism to the other posters, you do realise that this isn't the only presentation of autism? If you can truly get that sort of insight from mumsnet and be confident of it's accuracy you're more skilled that the multi disciplinary teams that dx autism. You do realise how much money this sort of skill could make?!

I'm just going to throw it out there but you do also realise that people can read threads on mumsnet from the start without posting on day one?

I actually missed a trick there @WinterBones I should have asked if you could comprehend.... rather than if you realise.

I don't understand why you keep repeating that I said I could cope without priority boarding but it made my life easier. I have never denied saying that or tried to suggest I didn't mean that I could cope.

I can cope. I will continue to cope. I have access to as much mental health support as I want (I'm one of the lucky ones who can afford to pay!) and this thread isn't triggering (why on earth would it be?).

I can't get too het up on language but this is why people don't like the term 'mild' autism. Because it's not a case that I just don't like scratchy fabric. I am autistic.

And also, I completely agree people with profound autism have it worse. I've said that multiple times. I just don't see why people need to pull me down to push themselves up (and more importantly level 2 autistic people who also need nearly every adaptation more than I do).

It would make most people's lives easier regardless of if they have autism. The majority of people cope. Your autism doesn't differentiate you on this, you are not disadvantaged. As stated by you, you don't require the use of the lanyard for preboarding but for changes. The thread is about why autism accomodations are questioned. If people use acomodations they don't need this leads to scepticism. Having a disability doesn't equate to needing every accomodation.

Nobody has mentioned scratchy fabric?
Nobody has pulled you down to push others up. I've stated fact and repeated what you've wrote. I've also given my opinion which is broad and generic apart fromm where I've had to answer your questions and you've personalised them.

The thread is about accomodations being taken seriously for autism. If you're looking for everyone to agree and state you need every acomodation you have and should get them without question or need, a public forum isn't necessarily going to give you that response.

@WinterBones - separately it's very interesting about your son also experiencing suicide idolation as part of melt downs and the reason he does it. I've never really understood why I do it and that make sense. I've done it since my teenage years at least and it took me until my 40s to realise that this was meltdown not overthinking. For ages I told myself 'I can't be autistic because I don't have meltdowns'. Then I finally clicked that this and also what I used to call my 'hissy fits' were actually meltdowns and everything started to get clear 🤣

Absolutely that was one specific example. As I’ve already stated my son is profoundly disabled and not a wheelchair user.

But even when looking at ambulatory and non ambulatory. There are people who cannot attend at all without the accommodations and others who simply got different tickets.

As I said in an ideal world everyone who needs it should have it but that’s not what we’re living in.

Disabled toilets being another example. My son uses a disabled toilet. But if someone else needed it he could wait and use it after them. Other people would be unable to wait at all. So the level of need should be considered and currently isn’t.

My son used to love going to the local theme park. Only manage 2-3 rides but that was a great day for him. Now it’s not an option as the last 2 times we went there were so many people in the disabled line that he didn’t manage a single ride all day. So more people having limited accommodations does impact on those who absolutely cannot take part without it, and while I’m sure many also need it. There is absolutely some who get it because they can.

@cockywoof i'm glad it gave you a little understanding :)
One of the things i do is youth mental health first aid, and a big part of that is discussing feelings and emotions in a simple way.. those conversations with him post meltdown help him regulate and understand what just happened, while helping me understand what is going on in his head.

They have the added bonus of helping me spot his triggers and distract/redirect so we have less instances of it happening!

But it’s not for random people on MN to say that people do or don’t need the accommodations.

Queue jumping did become ridiculous at one point, I agree, but a lot of places have tightened up on that. I think the Nimbus card has helped, but there have been people on the thread who even disagree that their assessment is flawed and accommodations shouldn’t be allowed.

You're not alone.

Having been a rebellious and easily influenced teenager who has tried psychoactive substances and had really bad times, being mid meltdown feels like a bad trip where time seems to go on forever and not at all, where the only sense your brain can make is that the only way out is out out.

This is why #actually autistic input matters when deciding what is a reasonable adjustment.

Coping when you're autistic means you're not able to cope with something else later, but sooner than someone who isn't autistic.

Actually the previous poster with a peanut allergy had it exactly (but mine is because of my autism rather than a peanut allergy). It's about the set up time once I get to my seat. When I fly I need particular things accessible to me, often even if I haven't actually used that item on the last 10 fligjts. The idea that I might need to actually communicate with the person next to me to get to get something is horrible to me. Once I sit down, absent a desperate need to use the toilet I don't get up again. I avoid the aisle seat because people are always touching you on the aisle seat as they walk up and down the aisle. The window seat also allows a little more space to lean over to reduce the number of times you accidentally touch the person next to you.

So because of this, even as prepared as I try to be, I faff around a lot getting all of my stuff out. The amount of time I spend isn't normal - I fly a lot and I can see that I'm unusual. DH (if with me) just takes a couple of things out, puts his bag up and sits out.

Now if I get priority boarding there's no one around when I'm doing all of this. I'm not holding anyone up and no one is pushing past me. I always choose the back of the plane by the toilets so that I don't have a long walk up ti the toilets (again - inevitable touching of people), and that's normally one of the last sections to board (I fly long haul).

If I board at normal times people are constantly pushing past, interrupting, and I am an annoyance. This causes me to get flustered. This can trigger a melt down.

If I could get the same quiet to unpack by boarding last, then If happily board last. But I can't because then you're being rushed because they want to start takeoff procedures. Plus it would take longer for the airline - this is why slow people get boarded first.

So yes boarding earlier would make many people's lives easier as a preference because they like to board earlier / not have to queue / not have to worry about overhead locker space. My life would be easier for all those reasons as well. But that's not why I use priority boarding. I use priority boarding because it makes my life much easier if I don't have a meltdown.

Do I need to justify myself more to you? Or is there actually nothing I can say because anyone who doesn't have profound autism is always abusing adaptations in your book?

And whilst I've been pretty clear on this, yet again, if there is only one slot available for priority boarding someone with profound autism can have it if they want it. I can cope

This is one of the reasons I'm so glad DD has a diagnosis now, and can grow up recognising the impact of her autism and how to cope, and when to ask for help.

And one last thing. I'm short. I would love to be sat in an accessible section at a concert because I might actually be able to see (although I've seen some pictures of wheelchairs at the back at some)! I'm not going to apply for an accessible ticket on the basis of my autism because me being short isn't related to my autism. And I reckon the number of genuinely disabled people who would is tiny. They're not the bulk of the problem.

Disabled toilets (and disabled spaces, especially wheelchair spaces) at concerts is the classic facilities problem though, isn't it. It's induced conflict over poor infrastructure. If you had more than one disabled toilet then you wouldn't need to conduct a sort of imaginary straw poll to see who 'needed' it more. There would be enough for everyone, whether you're a wheelchair user, have a stoma or can't manage the sound of a handdryer. Better designed spaces on buses would mean that buggy users and wheelchair users (who both need the space) don't get pitted against each other. We can do better with provision, it makes everything better for everyone.

Poor provision isn't an accident. It's because people don't think the rights of people who need it matter. That's why I wouldn't be so reliant on goodwill. I work in another area of rights where provision we took for granted is being swept back- never take anything for granted. And don't forget, the opposite argument is in play at the moment- that disability funding is taking away provision from non-disabled people. There are plenty of people who'd take all of it- including many elements of support for profoundly disabled people- away in a heartbeat under the guise of rebalancing spending.

Actually if you'd said you required it because of your autism first time round, I wouldn't have had an issue. I have no issue with people who need accomodations getting them my issue is with those who don't who do get them.

I've never wrote those who don't have profound autism don't require accomodations, I've wrote that they've been impacted by the increase in accomodations by those with lesser needs in various ways. I've even given a visual to show how the dx for autism has changed over time in the dsm to include many other presentations. I've also said I've seen first hand how people access accomodations because they can rather they need them. I've also wrote that those who can raise children, have a mortgage, career etc and everything that goes with those things I view as taking the micky when then suddenly need accomodations that put them at an advantage rather than bring them up from a disadvantage.

Wheelchair users on the bus is a strange one, as I think that's supported legally although rarely enforced. (I'd have to look it up).

Yes you're right better infrastructure from scratch Is the way forward.

I do believe things are going to get alot worse. Disability benefits are likely to be cut or at least limited in who can claim them, the proposals around send law is shocking but councils are going bankrupt and can see where the equality act could be changed and other parts changed with them.

There just isn't the money to continue spending as is and money is required for other areas such as defence. I'm not saying this is right but I can see where changes could come and the disabled are an easy target.

With the changes in the US and how popular they are it isn't hard to see the UK following if even in a small way.

I hope we have ds protected (vulnerable persons trust/wills etc) and believe for the most part we do, I also suspect there will have to be something for the most vulnerable and whatever that is he would qualify as there is no question over his disability.

I also hope they don't bring in autismas a reason for euthanasia like In Canada.

Yes I think wheelchairs on the bus are supported legally, as they should be, the point was more that if you had better bus design it would become a moot point in practice because there would be plenty of space for everyone.

Also it would massively cut down on the number of AIBU threads on here on the same topic...

Sunflower lanyard are for people with invisible disabilities. I have an invisible disability. The fact that you assumed that I was using one of the accomodations afforded by a sunflower lanyard for any other reason than because of an issue related to my disability is on you not me. You are the one who is singing the story about how there are all these diagnosed autistic people pushing for adaptations they don't need. And you called me out as an example to support that. Apparently I didn't explain it well enough to you for you to understand that was what was going on. How many others have you done to same to? How many have you bothered to even try to understand as opposed to just deciding because they seem to be fine to you they must be fine? Advocate for people with profound autism. Absolutely. They need you to because they can't advocate for themselves. But I can advocate for me, and I will keep doing that. And as part of that I will also advocate for anyone who tries to suggest that people with profound autism don't also matter. I always have and I always will.

As I said - it's a race to the bottom and I promise you that the ultimate winner in this will not be anyone who gives a shit about people with disabilities. The reality is that support for people with profound autism is what costs money. That's the group that needs special school provision costing hundreds of thousands, the group who won't ever have paid employment no matter what anyone does, and the group who will never live independently. Money is spent on level 1/2 but that's (nicest interpretation) because the same amount money goes a lot further or (realistic interpretation) money spent now might lead to a reduction in the long term spend (eg work support programs).

There has been an explosion of all types of autism recently. No one really seems to know why there's been an explosion in profound autism but there has been. And even in the last year the voices saying 'is it right this group is taking up so much in resources' have been getting louder. I'm sure you can find some people in the autistic community amongst those voices, but they're not the real threat. The threat is people who don't want the money going to support people with disabilities at all. And if you fight with people like me saying I'm abusing a sunflower lanyard just because I'm an easy target for you today and that there are loads of autistic people who aren't really impacted, you are playing right into the hands of that group.

Yep the idea that there is always a fight for who is more deserving out of a mum with a newborn and a person in a wheelchair chair is just ridiculous. There should be space for both and if that means able bodied people have to get off the bus, then people would probably start to actual put more funding into public transport. Because the buggy/wheelchair fight is just a distraction from the real issue.

Quite.

The wheelchair buggy argument is especially frustrating if your child's buggy is a disability support aid.

I would never deny wheelchair access to a wheelchair space, but when the buggy slots are taken up by buggys that could fold or their children can be removed safely when you've got a child who will cause harm to themselves or others when they are removed and you're told to wait for the next bus or walk it's so frustrating.

And my frustration isn't aimed at the people using that space. It's at the infrastructure designers, planners and service providers.

It really is not. There is a limited amount of space.
Some of our buses have space for one wheelchair user and two buggies. It cuts down the amount of conflict, but does not eliminate it during busy times. They can't give up any more space to buggies because they also need seats downstairs for elderly people who can not climb the bus stairs safely.

I'm saying it's ridiculous because there shouldn't have to be a fight between two groups who both actually do need the space, instead of the buses being organised in a way that means there is more space available. You can have more buses, or you can have more spaces that can be transformed between seats and buggy/wheelchair spaces. You could even say every time it happens everyone has to wait until a new bus with space comes. It's not an insolvable problem, it's just easier to make it play out as a fight between the mums and the wheelchair users.