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 is a slightly later article by author of the same study which is a really interesting read for anyone interested in the impact of the DSM-4 to DSM-5 move. It mentions their 2019 article but gives a broader picture. Very high level the author's view is that there needs to be a refocus away from 'autistic traits' that have high prevalence both at a population level and also with other conditions, and onto more specific measures that are more specific to autism. "For example, autistic gaze atypicality and an embarrassed look are qualitatively distinct, but both make it possible to positively score the A2 criterion, “Deficits in nonverbal communicative behaviors used for social interaction”.". The author's view is that this means too many things are now being lumped into autism that aren't actually autism (this is across the spectrum of support needs - it's not that people are being diagnosed with level 1 when they maybe shouldn't be, but also applies at level 2 and 3)). That's a very high level summary and there's more to it but it's interesting. How 'right' he is I don't know, but I'd personally support a move away from all this focus on 'autistic traits' and more focus going into what is at the core of autism.

Autism spectrum heterogeneity: fact or artifact?

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I do agree that the autism umbrella covering Kanners and Asperger's is so wide, it makes it seem like linear as opposed to the spectrum it is.
That said, there is a huge difference between a non-verbal high needs dependent autistic child and those who do live independently

But I also hate the term "high functioning" as my DC isn't functioning at all when the wheels come off.

I wish they could do a brain scan and diagnose with something nobody could argue with. It would save the tedium of the self-diagnosis/jumping on bandwagon/faking it/poor parenting/screen time/wanting benefits bashing brigade. I don't think half of them realise a diagnosis often brings bugger all support.

It isn't the same author as the article I quoted and the guardian article doesn't actually have a study, are you referring to the one I posted when you say it is a later article?

The guardian article you shared is in response to a study by Dr Laurent Mottron. The guardian article is an opinion piece by Tom Clements that reacts to that study. The article I shared is a slightly later article by Dr Mottron.

"Yet a report this week claimed that the difference between people diagnosed with autism and the rest of the population is shrinking. The autism spectrum is so all-encompassing that experts are now finally starting to question the validity of the term itself. After studying the meta-analyses of autism data, Dr Laurent Mottron, a professor at Université de Montréal, concluded that: “The objective difference between people with autism and the general population will disappear in less than 10 years. The definition of autism may get too vague to be meaningful.”

Ahh right I see now where you're coming from.

Yes I agree too many things are now being classed as autism. I'd like there to be a definitive test something physical that can't be argued with or opted into. I still think you get people saying t"they're a little bit autistic", "touch of the isms" or "everyone is on the spectrum" etc. I really do believe the dx is meaningless and more emphasis is needed to be put on the comordids.

When I phone places or book something we're taking my son too I always now say severe ld rather than autism to get across his presentation. He hasn't actually been dx as ld (severe autism Is his formal dx on the paperwork).

I can't imagine them starting from scratch again, I think that's why they've introduced profound rather than bring back Aspergers or equivalent, it would possibly lead to people who are articulate and communicative protesting the change but that issue doesn't really exist with people with profound needs.

I've often wondered different ways that the autism diagnosis could be improved to better help people. I tend not to get involved in debates as it gets so heated and ends up sounding like a severity top trumps which helps noone.

I think, for parents of younger children getting a diagnosis, they need something that gives them an idea of the long term prognosis and they type of support they will need. Then they need a word that conveys that to the public, educators, healthcare etc. I don't really feel autism on its own does that right now. I had no idea what my child would look like at 15 and doctors have no idea what will walk through the door.

One of the issues with childhood diagnosis is that children do grown and develop. Some children it's very obvious from the start that they will always be profoundly affected so saying 'profound autism' works for them. But one of the leading special autism schools near me sometimes has pupils that end up in mainstream for secondary even though they were really thinking they would never even talk at one stage, but they also take children from mainstream who just didn't carry on developing like thier peers.

I have wondered if a lot of children should just be told they have 'disorderd and delayed development' and have an adult diagnosis at 21. It feels much easier diving up adults as you know how it turned out.

That's not really the point it or I was making. The author isn't suggesting that there be a distinction made between profound autism and other types of autism but that across the spectrum there are people being diagnosed with autism on the basis of traits that aren't necessarily that uncommon in the population as a whole. The author would the diagnosis process to be more specific to points that are common amongst all/nearly all individuals with autism, even if sometimes these are less prevalent with age in individuals who learn masking. Another example given is 'hand leading' - it's a very common thing at age 2-5 and in that age group it's not a useful thing to be considered as part of the diagnostic process. However if it's seen in (eg) a 10 year old then it more likely to be a sign someone is autistic (my DC was hand leading at 10 but doesn't now they're 15).

I understand your point on needing a distinction between profound autism and the rest of autism, but it's a different point. The points in this article are across the entire spectrum - the author would argue they're leading to an over diagnosis in people who would fall into your profound autism category as well - he would say there's a group of people with very high support needs being categorised as autistic who absolutely do have those support needs, but aren't actually autistic. I like the article because I think it covers what I find so frustrating about the self diagnosis and autistic traits 'tiktok' movement - a lot of this is just normal population traits. I've experience this myself - I would have sworn that if one of my two kids was autistic DC2 was and DC2 wasn't. I was wrong and it's the other way round - DC1 is just a more reserved personality than DC2 so has lots of autistic traits (and their sensory stuff if from ADHD). DC2 is the autistic one. It's very obvious now I know but even as someone autistic myself I needed a professional to point that out. Interestingly DC1 never thought they were autistic and DC2 did.

That doesn't mean it wouldn't be a good idea to have a separate category for profound autism (although personally I'd be more aligned but the Lancet Commission that it should be a specific resignation within autism as a whole rather than a categorised as an entire separate condition because I do believe that there is something that is autism that is common across the ASD spectrum). As you know my main concern with an official resignation of 'profound autism' is for the group that fall just outside it, but I suppose that will always be the case for some.

I do wonder though whether what's needed is not a term for profound needs within autism, but profound needs overall i.e. to cover people who are non-verbal/need 24-7 care regardless as to why. Does it (should it) matter whether it's global development delay or autism for example if the needs outcome is the same? I don't have experience of profound autism to know whether it does matter - eg whether the things people need support with are so different the distinction is important - and I acknowledge you are far more qualified to give an opinion in that space than I am.

Sorry that was @Perzival

@Frowningprovidence the same academic has co-authored a paper recently that touches on that exact developmental issue you've raised and suggesting there should be a way to keep diagnosis fluid when children are being assessed because they can be initially assessed as autistic but later it becomes apparent that the factors leading to that diagnosis were limited to a particular stage in the child's development. Apparently in Canada there is specific pre-school funding available if a child is autistic that isn't available if a child has the same needs but isn't autistic that leads to parents of young children to push for an autism diagnosis over other things, and then that sticks even if not accurate (as it's hard to definitively diagnose a non-verbal 2 year old). I can't blame parents for that - it's what happens if a system is centered on diagnosis rather than need. As I understand it the UK education system is primarily needs based rather than diagnosis based so maybe not something seen here.

Similar point is made for more high functioning autism - 'autistic' is a much more socially acceptable diagnosis than (eg) borderline personality disorder and so parents naturally can push for an autism diagnosis. I've got personal experience of this with a friend repeatedly pushing for an autism diagnosis for their child who has material support needs and my personal opinion is it's because my friend doesn't like the diagnosis her child has been given to date. It's certainly not about DLA or support as that's already in place because of the child's needs.

Not from the article, but similarly to an untrained observer there's considerable overlap between (high functioning) autism and narcissism. Obviously you can be both, but they're fundamentally different things.

@cockywoof my last post wasn't all about the article you posted. Only the first tiny bit. The below is nothing to do with the paper you posted.

Some parents in the UK do push for the autism dx to help with dla. For hrm under smi there is a group of specific tests that the child has to meet in order to qualify, one of the tests (incomplete or arrested development of the brain - haven't checked exact wording) is met with an autism dx. I believe smi was set up for children like my son but there are more children now qualifying who are more able as there is case law around iq being about usefulness opening it up to more able kids. Ofcourse evidence is required.

Anecdotally I've also found many families find access to services easier with a dx than without and having a reason for behaviour can be better for the parents (not blaming themselves). Some councils do gatekeep support (ehcps/ short breaks/ activity groups). Autism now seems the goto as it is more socially acceptable as you said.

Canada is somewhere I wouldnt hold up for their view of autism. They allow autism to be used as a reason for euthanasia which I don't agree with.

I'm glad you made the point about narcissism, I've often thought this but avoid posting it in discussions like this as it's usually not taken very well especially with my views on splitting the spectrum/ self dx.

On of the things that terrified me most during my assessment process was that I might be told I was actually a narcissist. The lead psychologist told me that that concern in itself was a strong sign I wasn't one!

" I do wonder though whether what's needed is not a term for profound needs within autism, but profound needs overall i.e. to cover people who are non-verbal/need 24-7 care regardless as to why. Does it (should it) matter whether it's global development delay or autism for example if the needs outcome is the same? I don't have experience of profound autism to know whether it does matter - eg whether the things people need support with are so different the distinction is important - and I acknowledge you are far more qualified to give an opinion in that space than I am."

My personal opinion on this is yes profound autism needs to be separated out completely. Some people who would be classed as hf/AS etc with high care needs (not leaving the house, depression, anxiety, mh, not understanding social circs, mutism, etc) have completely different needs to that of someone who would fit in the PA category. Some people who don't have PA but have high needs may have fluctuating needs over their life or needs that can be improved with support. A person with PA wouldn't make that sort of progress or have that as a possibility. They have those needs forever. That isn't to take away from the other group of people but to ensure the PA group have their needs met and support is targeted and tailored to them.

@cockywoof I've heard that said many times and think it's true that if you worry about it you can't be.

Also people with profound needs with autism have typical autistic behaviour. People stim, have autistic meltdowns, etc. You can have profound needs from global developmental delay, and have zero signs of typical autism, because you do not have autism.

I sort of see what pp means.

My friends son has down syndrome which actually also varies a lot as a condition. He is tube fed, incontinent and non verbal and has very hypermobile so is in a wheelchair as he didn't really learn to walk, he doesn't have a body clock so is up in the night (Plus at 19 still needs a night feed and a change) he poo smears for sensory feedback. His care needs seem very similar (to me) to some profoundly autistic people. So I sort of see what she means. That the profoundness of the need is more relevant than the condition?

Down syndrome obviously has a clear genetic cause and some clear genetic features. But would his care needs be different that a profound autistic - maybe? Or Would they be well served in shared facilities, rather than in facilities for down syndrome that assume you walk and talk. Or autism that assume you are anxious and verb. There's loads of adult care that won't take my friends son as he is too needy, and then the autism facilities won't take him as he isn't autistic.

I don't know. Just reflecting on pps post.

I can see that but if we start giving people a dx based on needs purely and not cause we may then hinder research or progress on improving those conditions. If i could give my son a tablet that would remove his autism or lessen it, i would in a hearbeat. The same tablet may not work on someone with DS I know that this is also a subject that divides opinion. Also I believe (i dont know enough to be certain) DS has a group of issues which a person with PA may not have. It could create a system where not all needs are recognised and supported.

We've taken part in genetic testing and was part of the 100,000 genome project. It did find a mutation in my ds' genome that me and my husband don't have. Likely the cause but not proven to be (more people with the same mutation etc need to be found). We wanted to take part in another genetic research group but the research was cancelled in part because of fear of genetic engineering etc.

I suppose I was thinking in terms of service provision rather than as a diagnosis itself.

I'd love more research too, it was a shame it was stopped.

shame the genetic research was stopped. ND incl. autism is polygenic anyway so we may ever find the exact cause.

It would bring me alot of peace to know the cause. We have two ds' my other son has no disabilities, is an amazing student, plays sport, very social with a good group of friends. I bled through my pregnancy, was admitted to hospital etc so it would really like to know (I'd like to know I didn't cause it in some way).

I think some research projects were put under investigation by the HRA, like spectrum 10k as the data and DNA samples available were also going to be used in a way that was ethically questionable, as well as having in the fineprint that data and DNA could be sold to third parties for projects not related to this specific research.

There were also questions about whether all participants could actually give an informed consent.

I know the spectrum 10k was originally to find comorbid conditions of autism but then also delved into trying to find ways to prevent autism which is very close to eugenics. I don't have a problem with the first part but I do with the second.

I don't have any knowledge of the genome 100,000 that you've mentioned but I imagine similar ethical concerns were raised.

The 100,000 genome project went ahead. I believe some didn't have the full genome taken but had specific linked panels taken.

It was spectrum 10k that we offered to take part in. I actually agree with looking at preventing autism. I wouldn't want another family to go through what have/ are or another person to live how my son does if they don't have to.

I love my son and would swap places with him if I could happily, I wouldn't be without him, he is amazing. That said the impact of his autism is vast and I worry every day about what his life will be like after I've gone and that's with us putting as much as we can into place for him legally.

Have you seen the video of that young man who died in police custody in the US that has been doing the rounds lately? It's horrific. We've also recently had a lado referal for two of his PA'S (supported 2:1) they've been placed on the barring list with dbs and lost their jobs for the PA company and one with the sen school they work with too I believe.

https://m.youtube.com/watch?v=EaIbYv78gSY

For those who are interested, it's a hard watch, I couldn't watch it all.

Thanks. I will give it a fair watch.

I've not heard of the American case.

I have been closely following the case of Emmanuel Fru in Sweden. There is also a crowd funder for his family who are fighting for support and justice for him.

It's absolutely orwellian the treatment of autistic individuals by police and justice system in this day and age.

I don't want to get too off topic on a thread that isn't really about the ethics and concerns surrounding research/ers, but I can see why you would want a definitive cause for autism and ways to prevent it.

I think it genuinely would warrant a thread of it's own.

Yes, sorry I appreciate I've derailed. My apologies OP.

Ahsheeit how dou know that. Alice could also be lazy and work leds