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.

This rigidity expands to non ND people too, just look at any wfh thread or any thread where the OP works flexibly. One OP was taking lunch at three to do school run twice a week, a long standing arrangement with her line manager and the replies about how terribly unfair it was, what about shop workers who can’t take their lunch whenever they want, what about her poor colleagues (who presumably were also entitled to lunch hours), it was ridiculous.

@cockywoof I hadn't read your latest post until after I'd posted my replies to your earlier posts.

I think there is much we can agree on. Intellectual ability is a separate conversation and prob not one for this thread. Mental Health issues is another, where the MH needs are the main disabler rather than autism but autism is used as the reasoning rather than MH.

My point about managing a mortgage, kids etc (there was more listed) but not being able to manage in a theme park is to illustrate how accomodations for people who can 'function' is viewed. If someone is able to raise children with everything that goes with that, choose a mortgage inc application, run a home with everything that goes with that it seems absurd that they would require accomodations to attend an activity. This is the crux of what I'm getting at.

I deliberately chose the theme park queue systems as an example as there is much contention about it. The reasoning behind people with autism who are high functioning for want of a better phrase getting accomodations for social activities mirrors in alot of ways the bad feeling around people with autism getting accomodations at work.

@Perzival - personally I'd be happy for a dx to be required. I have one, and my children have them. We're talking about autistic people here and by that I am talking about people who would meet the qualifying criteria for an autistic diagnosis. I'm not talking about people who claim to be autistic but actually aren't. I don't believe you can identify into having a disability. I do believe there are people who don't (or can't) for various reasons go down the assessment process who would be diagnosed if they did.

The issue is if you make it harder and harder to get adaptations, that hits everyone and it absolutely will hit people with profound autism too. As you will be well aware, it can take years to get a diagnosis even for a child with profound autism, or it can take years to identify the right diagnosis. So what would be the plan for those people who haven't got a diagnosis yet but genuinely do need the accommodation? You could say must be in receipt of DLA but what do you do about the fact that that can get years to get in place? You could say blue badge, but what about people who don't drive and have no other need for a blue badge (not sure if you need DLA for a blue badge for a child now anyway?).

So you either risk some of the people who everyone would absolutely agree should receive these accommodations not getting them, or you accept that some people will be able to get through who shouldn't. Where we differ is that you believe that there are people who would be able to obtain an autism diagnosis who are pushing for accommodations they don't need and that is an issue specific to autism over and above any other medical condition (eg my sister getting a doctor's note that over states her MS). My view is that there are piss takers everywhere, it's no worse in this area than any other, and stating that there is no way that someone can have kids, have a job, and have a mortgage AND also have a disability that means they will struggle in a crowded theme park takes us on a race to the bottom.

It's the sunflower lanyard debate (or even wheelchair support at airports) - if you don't ask for proof one is needed then you absolutely will get some people who don't need the service using one (I remember there being reports of people saying they needed a wheelchair to skip queues at security maybe 3 years ago!). If you say proof is needed it is much more complicated to administer the scheme which will kill adoption, and you will also get a lot of people who do need one who don't apply for one (because it's too much work, fear of being turned down, or because they don't want to have to share their medical history with a random person at the airport). Again though, I don't think the big group to worry about are people who are genuinely autistic. Any time I ask for anything related to my autism, it's accompanied by a lot of sole searching about whether or not I am justified in asking, and that applies to pretty much everyone I've talked to about it (well except my child who just went 'really? great' - but then he just doesn't care about what anyone thinks about him, and loves anything that means people won't force him to have conversations with them).

I'm going to take the time over the weekend to read the Lancet report in detail and not on my phone. Profound autism is indeed mentioned in the conclusion, it's not actually mentioned in the recommendations though. I couldn't see anything in their to support the idea that there is now over-diagnosis of autism (which is the point I was asking about because I am really interested in whether there's any research supporting the idea that people are being diagnosed with autism without actually meeting the clinical significant bar) but just that there's a specific group of autistic people (broadly people requiring 24 hour care) who should be designated as having 'profound autism' and that the needs of this specific group can differ to the needs of other autistic people - they're proposing that the term is adopted as an administrative designation to make it easier to focus on this particular group if needed. I appreciate there may be some people who fundamentally disagree with this concept, but I'm not one of them and I think you'll find in reality there are very few people who do. The main risk I see in that approach is that there's then a group of people who don't qualify as having 'profound autism' but are just above, and they will then potentially get excluded. A focus on 'profound autism' isn't going to impact the people who can hold down a job, raise kids, have a mortgage, but the group that actually can't do those things, but don't necessarily need 24/7 support.

[OK we keep cross posting because I start writing something and then get distracted and come back to it a while later!]

Maybe, just maybe, even people with "mild" autism (for lack of me knowing a better phrase) who can on the outside appear to be holding life together, and are masking well, deserve reasonable accommodations. Even if some people think they don't.

But quickly on this "My point about managing a mortgage, kids etc (there was more listed) but not being able to manage in a theme park is to illustrate how accomodations for people who can 'function' is viewed. If someone is able to raise children with everything that goes with that, choose a mortgage inc application, run a home with everything that goes with that it seems absurd that they would require accomodations to attend an activity. This is the crux of what I'm getting at."

I get why it would seem absurd to someone. The thing is (and maybe it's not what you meant), you didn't say that this might seem absurd to someone, you said that if they could do one, then they didn't need the support. That's the point I have the issue with - because it's not correct. We wouldn't accept that type of statement for any other disability (eg we wouldn't say that if you're blind but can have a mortgage kids etc you don't need extra support in a specific environment) and we shouldn't accept it for autism.

@cockywoof it's a bit like saying "okay, you've only got one leg but we've seen you on your crutches walking 10 metres so here's a mountain, off you go". Except you didn't see them crying at home that evening because of the pain from that 10 metre walk, and you saw them hopping quite well using the crutches so you assume they don't really need the crutches, because you didn't really notice that they were there.

That's a good comparison.

Before I was pregnant, I definitely had struggles as an autistic person. I didn't know that after I had a child those struggles would increase exponentially. I didn't even have an official diagnosis until after my son was diagnosed and other life events had happened such as financial, physical and emotional abuse.

I did struggle in queues and supermarkets but I didn't know why I struggled with those and went through several different types of CBT based therapy that also just didn't seem to be working but I kept on trying because I felt like it was a me problem, and I could overcome it if I just tried hard enough.

Nobody saw me pull my hair out at home or pick the skin off the bottoms of my feet afterwards, or become so exhausted I couldn't brush my teeth or my hair as it felt too much, or the arguments that would start simply from being overwhelmed by talking.

I've no issues with the term profound autism to describe those whose struggles have been consistent and their support needs have always been high, and who will never live independently. Those whose parents worry about what will happen after they've passed away because the fight to get support while they're alive doesn't seem to get very far.

I no longer work. I can no longer work. I live in a house where I'm supported to be the best mum I can because that's all I can do with support. To the outside though it probably looks like I live in a multigenerational household and am managing to rear a child with far more complex needs than my own, and doing so successfully.

I still can't cope with crowds, public transport, unscripted phone calls, unannounced visitors, changes in plans or routines, even when the shopping says it's going to be delivered between 2-3 and turns up at 11 instead, or when I was working, when meetings would get shuffled around during the day instead of sticking to the schedule in front of me, or policy and system changes.

There's a lot you don't see behind closed doors.

Yep. And all this serves actually serves is people who don't actually want to have to accommodate people with disabilities. We've seen this play out recently on the US stage - end game for this is the infighting gets so ridiculous within groups who ultimately want different versions of the same thing that you get someone like Trump coming along and saying 'people are pretending to be disabled, you now only get to be treated as disabled if you can prove [a,b.c]', that person is held out as the ultimate protector of disabled people and the only people who really lose anything are genuinely disabled people who don't have the right paperwork for some reason, don't meet the criteria on a good day, or who don't know enough about what it's like to not be disabled to properly explain where they really do need support.

@cockywoof there's alot to reply to there and my house I'd now in full swing so I will reply but it'll drips and drabs.

I agree you wouldn't say that about any other disability and that is where autism should be/ where I would like it to be. Unfortunately it isn't because of people who self ID, people who say autism but mean mh, people who take the piss, parents who would rather get/pay for an autism dx than address other issues, super powers etc. The watering down of the dx means that it isn't perceived as a disability. While you personally may not be taking the micky others do and because the dx isn't clear cut, people do abuse it. This is why people are sceptical and why some are fed up with it being used as an excuse.

I don't believe my son would be denied accomodations he needs. Autism isn't invisible for him, he doesn't need a lanyard. (As an aside there are people in the disability community who detest the sunflower lanyard and don't believe it's helpful, it's incredibly abused and sometimes used as 'look at me, im special' symbol).

My personal feeling is that autism as a dx is now useless. While some understand the requirements for a dx to be made and the areas of life/communication that need to be impacted there is no universal understanding. Autism could be a PhD student with kids, career, home, friends etc or someone with 24 hour severe needs. You couldn't say to someone I have autism and them understand how you present whereas if you say I'm a wheelchair user, your needs ate prety well conveyed.

On the subject of dx. My son was dx'd at two years old with a wait of approx 10 months. Those who have profound or obvious needs don't usually have to wait the same as others where it isn't as clear cut.

The theme of the thread is about why people don't view accomodations for autism the same as maybe other disabilities and I personally feel it's because autism isn't taken seriously any more. The number of people wanting accomodations for it has increased massively because the dx has increased. I can easily see why people get annoyed and think people are taking the micky.

Where you've said I'm not correct in that someone can have kids andsuccessful raise them or a house and manage everything that comes with it but need accomodations in other areas I do see it as absurd. Kids come with stress, responsibility, paperwork, time keeping, safety etc a house comes with shopping, mortgage, cleanin, responsibility. It's absurd that you can manage one without support but not the other.

Personally, I would only give accomodations where people have social work involvement where autism is the reason behind it. In a bid to stop alot of mick taking- not gonna be a popular view but there we go.

Autism could be a PhD student with kids, career, home, friends etc or someone with 24 hour severe needs. You couldn't say to someone I have autism and them understand how you present whereas if you say I'm a wheelchair user, your needs ate prety well conveyed.

The same could be said for a lot of conditions, but autism seems to be the one everyone wants to take accommodations away from.

I'll take epilepsy as an example - there are people with epilepsy that responds well to medication, people who only experience seizures at night, people who are allowed to continue driving and love their careers and own their home and have kids. There are people who need 24 hour one-to-one care because of their epilepsy. It's not a "one or the other", though, so you can't say well if you have mild epilepsy you get no accommodations and if you have severe epilepsy you get all the accommodations.

Under that system, my epilepsy would be mild because I don't need 24 hours one-to-one care - but it's uncontrolled, so I can't drive, and I could have a seizure at any time, and I'm not supposed to cook unsupervised etc etc. So say I applied for a job and one of my reasonable adjustments was working from home, or working hours that suit my lift (solo public transport not suitable because of disorientation after seizures), but they turn around and say well no, because you don't need 24 hour supervision so it can't be that bad.

Epilepsy and autism are different conditions, obviously, but this idea of a blanket rule on mild vs severe conditions would have a huge impact on people who sit in the middle of this scale. An individualized approach is always better.

Even with wheelchair users, they could be ambulatory or a permanent wheelchair user. They may or may not be able to transfer. There is no generalisation in disability.

"Personally, I would only give accomodations where people have social work involvement where autism is the reason behind it. In a bid to stop alot of mick taking- not gonna be a popular view but there we go."

And where does that leave people like me who can't get any support from social services because my needs apparently make am"awkward "? They won't help me because I don't like loud noise (I'm slowly losing the hearing in one ear and have other hearing issues) and need a bit more than 30 minutes notice of an appointment which they had 2 weeks to arrange with me (I had no contact details so couldn't arrange it)

@cockywoof "i get why it would seem absurd to someone. The thing is (and maybe it's not what you meant), you didn't say that this might seem absurd to someone, you said that if they could do one, then they didn't need the support. That's the point I have the issue with - because it's not correct. We wouldn't accept that type of statement for any other disability (eg we wouldn't say that if you're blind but can have a mortgage kids etc you don't need extra support in a specific environment) and we shouldn't accept it for autism."

Comparing autism to being blind is like apples and oranges. Being blind is something where the issues/ needs and accomodations are quite self explanatory and easy to see why accomodations are needed. Autism being neurological isn't as self explanatory and because people vary in needs or presentation it is completely different. Ising the theme park example, im amazed at how many people dont need support in any other way but if they walk into a theme park they suddenly can't manage. You really cant see why people see it as taking the micky? I will state again I'd quite like autism to always be viewed as a disability and taken seriously but it isn't, because I'd like it to be doesn't make it happen.

Maybe just say "sorry that isn't convenient, can we arrange it for..... instead?" Like anyone else would?

As for your hearing I'm not sure what your point is, do you need a social worker to avoid loud noises or help with referals to audiology? I'm guessing there's more to it?

I agree a personalised response is better but the differences in autism presentations are vast. There are people with no communication, no personal skills or skills for daily living, can't dress themselves, feed themselves etc that require 24 hour support for everything rather than incase they have an episode. There is a huge difference so yes the difference does need to be pointed out so people have a better understanding of level of need. It may not be advantageous for some but it certainly is for those with profound needs.

I didn't see the message until a few hours later as I wasn't expecting anything

They had a habit of taking me to loud places. I remember one time refusing to go in and just walked off. They knew very well that I don't like loud noise (it hurts) and just gave me a lecture. They should have taken me to places that were quiet. They were told this but ignored it

They refused to work with me after that

I was going to make a very similar post to this. If you only saw me at work, you'd think I was quirky but (I hope) highly competent, and think that any need for adjustments would be taking the piss. That's not reflective of the rest of my life, and doesn't take into account how much appearing normal at work takes out of me (thank goodness for WFH).

I did struggle in queues and supermarkets but I didn't know why I struggled with those and went through several different types of CBT based therapy that also just didn't seem to be working but I kept on trying because I felt like it was a me problem, and I could overcome it if I just tried hard enough.

And yes to this! All the years of thinking I wasn't trying hard enough, and that it was my fault that certain situations never felt any easier, and that I needed to keep pushing my comfort zone and so on. I don't subscribe to the "autism is a superpower" way of thinking, but I can see how reclaiming something that has made you feel (and in some cases been used by others to make you feel) like a useless failure for decades as a positive trait is appealing.

There is absolutely no support for autistic adults in my area. Nothing at all. DS receives disability benefits due to his diagnosis but as he lives with me, it's not enough for him to live elsewhere. No-one is interested in helping support him to get employment. I'm not sure where this magic social services person is going to appear from as I'm sure the have bigger fish to fry.

This is it, our support services are already costing a fortune and massively stretched as society has more and more complex diagnoses and issues and want the state to intervene. I think we have to manage our expectations sadly.

DS can wash and dress (shorts and t shirts all year round) and make himself food and tidy up when reminded. He is helpful in the house, very intelligent but can only shop online, would struggle to answer the door for deliveries. Can't speak to people unless spoken to first, struggles to use a phone. Can drive but only locally and to places he knows and would panic if he got lost. He's absolutely not a priority and would struggle to engage with any services anyway.

It's a worry though and he can obviously function to an extent but what happens when I'm not here to support him?

But yes, on the face of it, all you'd notice is that he's very quiet and has an awkward gait.

It took until he was about 18 for him to be able to order his own dinner in a restaurant. He can't go to the bar and order a pint. His life is restricted but again he's not a priority in the grand scheme of things. But he has a degree etc so according to some here he's clearly at it.

Same here. I was told I should have adapted by now. To what? The meltdowns because I can't cope with loud noise and my organisational difficulties

The government wants people back to work. But how when many of us struggle with every day things?

@Perzival do you honestly believe that it's only autism that this applies to? Look up the differences between early progressive MS and Advanced MS. And then someone in early progressive MS may appear absolutely fine but have sudden onset mobility issues.

I don't mind if you want to carve out profound autism. I still think that's going to hurt a large group of people who would have always received an autism diagnosis but now aren't considered 'bad enough' to access services, but you can advocate for what you want. It won't make any material difference to people with 'mild' autism - people with 'mild' autism aren't usually trying to access the same services as people with profound autism.

What you can't seem to understand is that Aspergers was already a disability and you could get accommodations if needed/reasonable for Aspergers. Why are you trying to take away people's rights because the APA decided to rename it?

The fact that some people object to sunflower lanyards because they're 'look at me' is everything that is wrong with this all of this. Not all disabilities are visible. My sister has had people gossiping about her being drunk when experiencing an episode. If she wants to wear something that tells the world that she has something going on with her, why shouldn't she? Why should she have to worry that other disabled people will judge her for being attention seeking?

And I go back to - what specifically is it about autism that means that someone who is managing the basics of life can't have a reason to need support in a theme park? Because you seem to be saying that you can completely understand that my sister with MS could need support, but it's inconceivable to you that I (who as I mentioned was about two minutes away from finding myself rocking in a corner of a doctor's waiting room earlier this week) might.

I've never skipped a queue in a theme park btw. I have used my sunflower lanyard to get priority boarding at the airport. I can cope without it but it makes the whole experience fat far easier for me and it doesn't seem to harm anyone. I mainly wear the lanyard because I can react badly to changes that seem insignificant to many people, and it helps if the person dealing with me has the context that there might be something going on apart from me just being a complete arse.

It doesn't matter that people won't be able to get this magic social services person. Most people with profound autism will, so it doesn't matter what happens to people with Level 2 autism, let alone Level 1.

All that matters is that there gets to be a winner in the game of disability top trumps. Even if it means an end result that is worse for pretty much everyone.

@cockywoof You think people with profound autism get help from Social Services?? Most do not get help until situations are desperate - or lets be honest, their carers/parents get help. Social Services can not cope with the volume of people who desperately need help, and I mean help or it might lead to a death, serious injury or someone non verbal simply being abandoned. They certainly do not have the resources to help people who are managing to feed and clothe themselves and have some kind of life.

There are work coaches provided by several large charities who will help anyone with a disability trying to find work.

My point on a social worker is that those with needs that needs accomodations in all forms of life, have one. One doesn't need to be magiced up.

No not top trumps. Many people quote this or race to the bottom as a way of getting people to stop pointing out that there are people who are more severely impacted. This is factual, there are people who are profoundly/ severly impacted by autism and are more impacted than anyone who is able to hold an argument on here.

For most other disabilities people are usually glad that they aren't severe.

"ve never skipped a queue in a theme park btw. I have used my sunflower lanyard to get priority boarding at the airport. I can cope without it but it makes the whole experience fat far easier for me and it doesn't seem to harm anyone. I mainly wear the lanyard because I can react badly to changes that seem insignificant to many people, and it helps if the person dealing with me has the context that there might be something going on apart from me just being a complete arse" you admit you can cope without it but still use it because it makes it easier for you. Well, yes it does make it easier, do you not think everyone would like to get through airports easier? You're using an accomodation you don't need because it benefits you to do so. This is exactly why people are sceptical, the system is abused, you are abusing the sunflower lanyard to get through the airport easier when you admit you don't need it.

In regards to your continued comparison of autism and Ms, autism is the disability that I see abused the most. You don't generally get people self diagnosing Ms, there are no #actuallyms advocates, Ms isn't something people have started to opt into and you don't really get people saying "they have a touch of ms" etc.

Profound autism is being carved out and not by me, by professionals who recognise the damage being done to this group of people. The damage that may be done to others who then can't access services by association shouldn't be a reason for them not having their needs met. This group is having to be segregated because of the damage that has been done to them.

You ask why I'm trying to take away people's rights? What rights am I trying to take away exactly? I have no control over the rights of others apart from my children to some extent.

You seem to dislike the segregation of profound autism because it will have an impact on others with lesser needs? Why do people with less severe needs require the association of those with profound needs? I don't think it's me that's racing to the bottom.