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Why are accommodations for autistic people often seen as unfair?

649 replies

YourPoisedFinch · 19/02/2025 09:39

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.

OP posts:
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Perzival · 20/02/2025 18:04

@cockywoof yes you are projecting. If someone is able to raise children, hold a job, have a mortgage and generally manage life surely they're able to manage themselves in a queue or in other aspects of life.

The widening of the dx is the problem, #actuallyautistic's are a problem, the silencing of carers/ parents is a problem, the watering down of what autism represents is a problem. People who are now classed as having autism but wouldn't have been previously are a problem because they don't represent the level of need, support and life of those with profound autism.

As for the reports, articles etc, I'll indulge you in a hold my beer kind of way.... one min!

Crumpleton · 20/02/2025 18:04

OP had it not crossed your ex colleague's minds that when they left at 5 you were still there working away?

Perzival · 20/02/2025 18:15

The articles above detaile why the term profound autism is needed and more because of the widening of the dx.

Digdongdoo · 20/02/2025 18:17

Crumpleton · 20/02/2025 18:04

OP had it not crossed your ex colleague's minds that when they left at 5 you were still there working away?

Because they likely weren't leaving at 5 on the dot everyday.

ViolinsPlayGentlyOn · 20/02/2025 18:23

If someone is able to raise children, hold a job, have a mortgage and generally manage life surely they're able to manage themselves in a queue or in other aspects of life.

You may know about one type of autism but this shows you have absolutely no idea about the challenges different people face. Holding a job and having a mortgage does not mean you can manage with everything else.

Frowningprovidence · 20/02/2025 18:23

The autism severity debate is too fraught for me.

But, I dont know any theme parks that don't have criteria for those passes. With evidence needed. its either that Nimbus card or you have to get your dla higher rate mobility letter out in any places we looked.

So I think maybe the the theme park queue jumping isn't that common now.

Crumpleton · 20/02/2025 18:29

Digdongdoo · 20/02/2025 18:17

Because they likely weren't leaving at 5 on the dot everyday.

Surely if later they'd have known that the OP didn't leave at 5 either, if earlier then they're CFers for even mentioning about OP's agreed timings.

MewithME · 20/02/2025 18:31

@RafaFan

For some reason I'm having an issue where it's not allowing me to delete and I've accidentally @ without meaning to.

Sorry!

Digdongdoo · 20/02/2025 18:32

Crumpleton · 20/02/2025 18:29

Surely if later they'd have known that the OP didn't leave at 5 either, if earlier then they're CFers for even mentioning about OP's agreed timings.

Well yeah, but if they're all leaving at 6 (or later), OP would be working an hour less. Still not OPs problem, it's a management issue.

Perzival · 20/02/2025 18:38

Frowningprovidence · 20/02/2025 18:23

The autism severity debate is too fraught for me.

But, I dont know any theme parks that don't have criteria for those passes. With evidence needed. its either that Nimbus card or you have to get your dla higher rate mobility letter out in any places we looked.

So I think maybe the the theme park queue jumping isn't that common now.

The nimbus card is easy to manipulate. It's just an added cost, if someone is able to pay for a private dr letter or use a fake dr letter they just forward it on to nimbus with a description of why they can't queue. There are also anecdotes of people who have told nimbus what symbols they 'need' when paying for the full card.

If it was just high rate mobility I'd agree completely.

Perzival · 20/02/2025 18:46

ViolinsPlayGentlyOn · 20/02/2025 18:23

If someone is able to raise children, hold a job, have a mortgage and generally manage life surely they're able to manage themselves in a queue or in other aspects of life.

You may know about one type of autism but this shows you have absolutely no idea about the challenges different people face. Holding a job and having a mortgage does not mean you can manage with everything else.

Kind of my point. I'm familiar with the most severe impact autism can have. As it can now have so many different presentations the dx is pointless as it means so many different things to so many people. This makes it open to manipulation.

To be honest if you're able understand, finances, get even basic qualifications, fill in an application form, show how you meet the criteria, send the app off, get to the interview, be successful at interview, take the job, manage a bank account to get paid etc I would think you'd be able to understand/ see inadvance if the job was suitable for you and what issues you may have with it before applying.

Applying, proving suitability, succeeding at probationary then asking for accomodationations would make me question if someone was pulling a fast one especially now you can pay for a dx.

ViolinsPlayGentlyOn · 20/02/2025 18:50

Perzival · 20/02/2025 18:46

Kind of my point. I'm familiar with the most severe impact autism can have. As it can now have so many different presentations the dx is pointless as it means so many different things to so many people. This makes it open to manipulation.

To be honest if you're able understand, finances, get even basic qualifications, fill in an application form, show how you meet the criteria, send the app off, get to the interview, be successful at interview, take the job, manage a bank account to get paid etc I would think you'd be able to understand/ see inadvance if the job was suitable for you and what issues you may have with it before applying.

Applying, proving suitability, succeeding at probationary then asking for accomodationations would make me question if someone was pulling a fast one especially now you can pay for a dx.

You have absolutely no idea. How dare you accuse people of pulling a fast one? How dare you challenge the need for accommodations?

I was diagnosed on the NHS. I didn’t pay for my diagnosis. Even if I had, show some respect for medical professionals.

Superhansrantowindsor · 20/02/2025 18:55

@Perzival is right though imo

autism is too broad a term. My dd is autistic, holds down a job, lives with her partner, planning on starting a family etc. My best friends son is also autistic. He will never be able to live independently. They both need support but to completely different extents. And my best friend has found it increasingly difficult to get accommodations now because of the sheer volume of people now entitled to accommodations.

Ahsheeit · 20/02/2025 19:34

So much ignorance, so many armchair experts, so much ablism.

Reasonable adjustments mean that I can do my job fully.

Actually, I'm tired of trying to get through to people on this thread. Pointless.

MumblesParty · 20/02/2025 19:43

This reply has been deleted

We've removed this as it refers to a deleted post.

ImagineRainbows · 20/02/2025 21:32

This reply has been deleted

We've removed this as it refers to a deleted post.

It was probably deleted because of your shockingly ableist views while claiming to be a medical professional.

CallItLoneliness · 21/02/2025 00:41

Perzival · 20/02/2025 18:46

Kind of my point. I'm familiar with the most severe impact autism can have. As it can now have so many different presentations the dx is pointless as it means so many different things to so many people. This makes it open to manipulation.

To be honest if you're able understand, finances, get even basic qualifications, fill in an application form, show how you meet the criteria, send the app off, get to the interview, be successful at interview, take the job, manage a bank account to get paid etc I would think you'd be able to understand/ see inadvance if the job was suitable for you and what issues you may have with it before applying.

Applying, proving suitability, succeeding at probationary then asking for accomodationations would make me question if someone was pulling a fast one especially now you can pay for a dx.

You can pay for an assessment, you can't pay for a dx. And as to whether a job is suitable...there is a weird rigidity in England about how jobs get done. Clearly OPs job doesn't need to be done 9-5 by everyone, or 10-6 wouldn't be a reasonable accommodation. So she is suitable for the job, which is presumably doing tasks X, Y, and Z for her employer. Adjustments mean that she can do the job to the best of her ability, which is good for her employer, her, and society at large. And yeah, that weird rigidity hurts other people too, and I can understand them feeling pissed off, but they are pissed off at the wrong person; it's the employer, not OP, who is potentially applying arbitrary constraints. A bit of flexibility and creativity would go a long way.

The race to the bottom though, where someone should just be able to push through because they aren't so profoundly autistic they can't function is harmful to everyone, including the profoundly autistic person who now has less taxes to support them.

cockywoof · 21/02/2025 06:05

Perzival · 20/02/2025 18:04

@cockywoof yes you are projecting. If someone is able to raise children, hold a job, have a mortgage and generally manage life surely they're able to manage themselves in a queue or in other aspects of life.

The widening of the dx is the problem, #actuallyautistic's are a problem, the silencing of carers/ parents is a problem, the watering down of what autism represents is a problem. People who are now classed as having autism but wouldn't have been previously are a problem because they don't represent the level of need, support and life of those with profound autism.

As for the reports, articles etc, I'll indulge you in a hold my beer kind of way.... one min!

OK so my sister has MS and often walks with a cane - it depends on how her condition presents on any particular day. She has a mortgage, kids and a job. Is she disabled enough to justify her being able to skip queues? How would you decide given her condition varies day by day?

And why would you assume that she wouldn't take the piss when she doesn't need the adaptation but an autistic person would?

There is (obviously) an issue about the fact that a lot of places take the easy route of simply allowing people to self-identify into disability given that the alternative is to insist on provision of medical data and decide how you deal with that (although I think technically this would be legal in the UK - I know not in the US). But, given that you usually don't need to prove that you're disabled to get the adaptation, I'm not at all clear why you think people who are diagnosed as autistic are the ones taking advantage here - that's actually a pretty small group - rather than ~ 98% of the UK population without an autism diagnosis.

cockywoof · 21/02/2025 06:17

@Perzival I will try and have a look through those articles but obviously there are a lot so it will take a while. I note that you've said these are about the terminology 'profound autism' and the expansion of the diagnosis - are you able to pinpoint any that refer to the point I asked about to save me time going through reporting on the 2021 Lancet report (I prefer to read the report myself).

The first few at least all seem to relate to the 2021 Lancet report. That report indeed does refer to the term 'profound autism', although that's only one small part of the report. It also does say there's not enough focus on research into support for people with 'profound autism' and their family but I think you missed that it also called out the same issue in other areas - for example autistic women and girls. It also seems to specifically disagree that the DSM-5 change has led to over diagnosis of autism and they are specifically supporting the DSM-5 change itself as (in fact their main concern for incorrect diagnosis seem to be in misdiagnosis in the profound autism space where they claim people global development delay /intellectual disability are being overly diagnosed with autism as well). That said it's a long report and I've only skimmed.

cockywoof · 21/02/2025 06:20

But, given that you usually don't need to prove that you're disabled to get the adaptation, I'm not at all clear why you think people who are diagnosed as autistic are the ones taking advantage here - that's actually a pretty small group - rather than ~ 98% of the UK population without an autism diagnosis. - just correcting myself as I can see that actually often you do. I've never tried. @Perzival it seems you have a belief that medical professionals involved in autistic diagnosis are more likely to be fradulent than in other areas. Is that the concern you're raising? My sister's MS doctor wouldn't fake a medical letter, but my psychiatrist would?

cockywoof · 21/02/2025 06:31

CallItLoneliness · 21/02/2025 00:41

You can pay for an assessment, you can't pay for a dx. And as to whether a job is suitable...there is a weird rigidity in England about how jobs get done. Clearly OPs job doesn't need to be done 9-5 by everyone, or 10-6 wouldn't be a reasonable accommodation. So she is suitable for the job, which is presumably doing tasks X, Y, and Z for her employer. Adjustments mean that she can do the job to the best of her ability, which is good for her employer, her, and society at large. And yeah, that weird rigidity hurts other people too, and I can understand them feeling pissed off, but they are pissed off at the wrong person; it's the employer, not OP, who is potentially applying arbitrary constraints. A bit of flexibility and creativity would go a long way.

The race to the bottom though, where someone should just be able to push through because they aren't so profoundly autistic they can't function is harmful to everyone, including the profoundly autistic person who now has less taxes to support them.

Edited

And of course sometimes you either don't want to declare a disability at the point of application (because of the risk you're discriminated against), or simply have no idea until you start that something is going to be an issue.

I have an adaptation agreed at work. I am perfectly capable of doing my job but there is no way I could have predicted the policy that was brought in that I couldn't cope with and even if it had been in place when I started, I couldn't have predicted the way it was being implemented as that wasn't public and even with best intentions my hiring manager would almost certainly have not anticipated that it would be worth even mentioning. This is because they're not-autistic and the part of the policy I have an issue with doesn't actually cause someone who isn't autistic an issue (it wouldn't cause all autistic people an issue either). My manager doesn't get why it was causing me such an issue and why their assurances that 'it doesn't matter - no one is going to worry about whether you comply or not' wasn't enough. But I work for a half way decent company, and have a manager who thinks I actually do have value to the company, and so I got a formal exemption from the policy agreed - the fact that they didn't understand wasn't the determining factor.

And just to be clear, no one who I haven't specifically told even knows I have this adaptation. It doesn't impact them at all. But I would have had to quit my job if I hadn't had it agreed because ultimately no job is worth my life.

Perzival · 21/02/2025 08:24

CallItLoneliness · 21/02/2025 00:41

You can pay for an assessment, you can't pay for a dx. And as to whether a job is suitable...there is a weird rigidity in England about how jobs get done. Clearly OPs job doesn't need to be done 9-5 by everyone, or 10-6 wouldn't be a reasonable accommodation. So she is suitable for the job, which is presumably doing tasks X, Y, and Z for her employer. Adjustments mean that she can do the job to the best of her ability, which is good for her employer, her, and society at large. And yeah, that weird rigidity hurts other people too, and I can understand them feeling pissed off, but they are pissed off at the wrong person; it's the employer, not OP, who is potentially applying arbitrary constraints. A bit of flexibility and creativity would go a long way.

The race to the bottom though, where someone should just be able to push through because they aren't so profoundly autistic they can't function is harmful to everyone, including the profoundly autistic person who now has less taxes to support them.

Edited

I'm not sure if you are in the UK but we do have many organisations that will assess for autism and yes you're right you pay for the assessment not the dx but three are families who repeated get their child assessed until they recieve the dx. Also, there are some organisations which are openly discussed on sen groups/ forums which are known for giving a dx easily. So do pay for the dx. There is a whole industry around it including assessment completed remotely without even meeting the person in real life.

Stating that people with profound autism are impacted by the widening of the dx etc isn't a race to the bottom, it's a documented fact. Some people are vastly more impacted by their autism than others, self ID is harmful and the nd movement is harmful; if you can opt in to dx ofcourse society as a group is going to take the disability less seriously.

The thread is about why accomodations for autism are seen as unfair. The huge number of people who now describe themselves as nd/ autistic etc and sayings such 'autism.is a super power' and 'different not disabled' does impact on whether accomodations are seen as legitimate. Autism can't be similataniously a good thing to be celebrated and a disability.

cockywoof · 21/02/2025 09:01

@Perzival I actually agree with a lot of what you're saying in that the 'autism is my superpower' and similar brigade make me want to scream, and I'm very happy to have a discussion around whether these types of voices (which are ultimately actually a minority of autistic people) are one of the factors in why the OP's colleagues have reacted negatively to her accommodation at work. I think that you may have some confirmation bias here - outside the actual autistic and ND communities, not many people have a clue about any of this type of debate. My experience is that everyone I've told at work that I'm autistic hasn't really known what that means and has just shrugged and gone 'ok then'. Outside of people actively involved, I people coming up with the the 'anyone can get an autism diagnosis' type lines much more that I see any 'autism is a superpower' type lines. That might be my own confirmation bias.

However, I see the idea that an autism diagnosis as somehow an easy thing to get as far more damaging as a general message. The number of people paying for multiple private assessments for autism because they are desperate for a diagnosis for spurious reasons must be tiny - it's only a very small group of people who can afford that in the first place, and there's very limited benefit even if you get diagnosed. I actually have a friend whose child has had multiple NHS (or at least government funded - don't know who actually assessed) for autism and keeps pushing for more. There isn't a specific benefit for them for it being autism (they have DLA etc already in place and the child already has specialist and funded schooling), and so I'm not sure why they keeps pushing, but possibly it's because if it's autism it's not their 'fault' (long story but another diagnosis has been attachment disorder, which obviously raise some questions around whether the caregiver was at fault). It's nothing to do with pushing for a diagnosis to get adaptations. Meeting the child you can absolutely understand why a parent would think that maybe medical practitioners were wrong and the child is autistic - there are clear autistic traits, and the NHS is ultimately approving repeating these assessments.

I'm not saying it doesn't happen, but I am saying it's not the norm. I'm a member of some in person ND support groups where a diagnosis isn't required and there's a less medicalised approach advocated. I haven't actually met anyone who says they think they're autistic who hasn't shown clear autistic traits. Would they all qualify for a diagnosis? Who knows, but it doesn't really matter to me. I completely agree this isn't the sort of group that would be appropriate for someone with profound autism, but that doesn't mean that the group shouldn't exist. It also doesn't mean that us Aspies are somehow unfairly taking up your space. The distinction between Autism and Aspergers was always fairly blurred anyway. If you discount the fact that Aspergers is clearly a better fit, I think I would have qualified for an Autism diagnosis reading the DSM-4 criteria for that.

The reality is that people with profund autism do have a very different struggles. Life is probably harder (hard to be sure because these people rarely have their
own voice) and life is definitely harder for their family members. But arguably the key differentiator isn't the autism experience but the intellectual disability - it's certainly almost impossible to separate out the two. What the Lancet report was getting at is that absolutely not everyone has the same experiences, and it's important to treat autism by looking in a structured way at lots of different areas. Relevant to that is profound autism v other forms of autism, but also income level, cultural background and gender.

All of that, which I am very happy to discuss with you, is an entirely different thing from saying that if you have kids, a job and a mortgage there's no way you could be in a position that you have a genuine disability-related reason that you would struggle in a crowded environment like a theme park.

Perzival · 21/02/2025 09:02

@cockywoof I'm not going to quote each post due to the number/ length etc but I will try to go through and reply to your points.

*if someone with MS didn't require an accomodation on any given day no I most definitely wouldn't challenge them. I wouldn't challenge someone with autism either because it wouldn't make for a good work environment. Would I view them differently, yes I would. Would I be more inclined to think that someone having a work accomodation for autism who 'successfully' manages other aspects of their life is taking the micky, yes I would. Autism is too easily used as an excuse nowadays. The fact that it includes so many differing presentations makes it open to abuse.

*your point around dx/ non dx taking the piss, on your first reply. The thread is about accomodations for autism. People without a dx using autism as an excuse/ reason is maddening. I can't think of any other dx you can ID as apart from adhd. People without a dx taking the micky without using autism as an excuse/ reason isn't really part of the conversation.

Responses to your second reply.
*not sure what other info you want, please feel free to Google.

  • Profound autism as a term is the biggest take away from the report. It is mentioned in the conclusion as well as having a full section dedicated to it. I can't actually recall any part of the report let alone the main take away being people being overly diagnosed especially in that category. They do mention women/ girls also trans and cultural impacts but these aren't given the same level of focus as profound autism and aren't even directly mentioned in the conclusion. The report does advocate for better inclusion of people with autism in society as a whole.

Reply three:

  • you've gone back to the non dx point. Accomodations such as the nimbus card mentioned upthread require evidence. The Dr only has your word to go on and yes I believe some people lie to get evidence of a required accomodation. Not everyone with autism requires accomodations or even the same accomodations but where one is regarded as a benefit, yes I can imagine people lying to get it.

I haven't brought up that comparrison of the Dr's, you have. I have no views on either of those Dr's. I haven't the foggiest who they are.