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AIBU?

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Autism

1000 replies

lolly07766 · 17/02/2023 23:46

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

OP posts:
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7
Cuckoosheep · 23/02/2023 09:47

I used "splinter skill" as that's what we've been told it is by the professionals.

My son struggles in many areas and I'd demesne who if you met on the Street most would assume has severe learning difficulty. In some areas he is absolutely incredible. These are visual,decoding and memory. I think his overall intelligence is hindered by the impact of his autism. Eg he was non verbal but when we started to use the high tech aac device with him (am app where you press a button and it vocalises it for you, the button has a picture but also prints the written word on the screen) he was able to press the button see the word, hear it pronounced and then copy it which he did. This had no emotion or other meaning attached to it so he could just learn to say the words. He then did this using YouTube videos for various other languages. He learnt the times tables by rote and how to divide. However if you ask something like "if Tim has 132 apples and shares them with 12 people how many do they get each? He wouldn't be able to answer. He could easily answer 132/12. He also knows things like capital cities and countries etc. If you asked him to describe a country he couldn't. He can count and say the alphabet backwards and forward in many other languages too. If you ask him what he did or wants to do at x time or morning or evening, he can't answer. These are all being worked on as well as extending the number of words he uses to communicate verbally and why he communicates. He is incredibly sensory too and loves to stim and vocalise, no sense of danger has involuntary movements etc so his presentation to people who don't know him is easy to understand.

I think the shared experience is interesting and as you've seen I value hearing it but I always take it with a pinch of salt as I'm aware his experience of life is so vastly different to what someone who is very articulate and won't experience the same limitations on life that he has. One of the reasons I want the dx split is because I don't want people such as #actuallyautistic speaking for him and their reality of autism shaping services, research and the wider view. I think for people like my son the growing trend of difference not disabled is quite dangerous.

Cuckoosheep · 23/02/2023 09:48

Sorry about all my typos it's half term and I'm functioning on about 3 hours sleep a night with no chance of any proper catch up until school next week. I'm sure you can get the gyst.

Itisbetter · 23/02/2023 09:51

I'd look like a right pillock if I tried to claim an autism-related quirk as evidence of my genius. well only if your ability to read at preschool was a “quirk” rather than demonstrating intelligence.

Itisbetter · 23/02/2023 09:54

and when people's brains work very differently to the average you see I don’t think autistic peoples brains DO work differently nor are “wired” differently or whatever the idea is. I use “IQ” but I really mean “intelligence”.

Itisbetter · 23/02/2023 09:57

@Cuckoosheep your son sounds remarkable (and very familiar!).

JarByTheDoor · 23/02/2023 10:04

Itisbetter · 23/02/2023 09:54

and when people's brains work very differently to the average you see I don’t think autistic peoples brains DO work differently nor are “wired” differently or whatever the idea is. I use “IQ” but I really mean “intelligence”.

You what?

So why can't your kid do stuff other kids do, if his brain works exactly the same?

JarByTheDoor · 23/02/2023 10:11

@Cuckoosheep yep, as I said, if there is some underlying thing going on that fairly commonly causes unusual or disproportionate abilities in this one distinct area, it will be heavily affected in how it's expressed by the differences in domains like communication, cognitive ability, interaction etc.

I've no desire to shape services for anyone; I wouldn't have a clue. And I've no time for the "not a disability" lot. If you're not disabled, then you don't merit a diagnosis IMO.

JustKeepBuilding · 23/02/2023 10:18

the growing trend of difference not disabled is quite dangerous.

I completely agree. If someone meets the criteria for diagnosis they are by definition disabled.

On a practical level how do those who want different diagnoses and different services see the split working? Especially given the long waits for assessments currently.

If you ‘just’ went back to different diagnoses I could see that working practically because all those previously ‘only’ diagnosed with ASD (whatever their ability/difficulties) would still keep their diagnosis and be able to access services. It would just be newly diagnosed people who got another name for their condition, similar to the switch to ASD in the first place.

But if you split services as well and had service 1 for those with diagnosis A and service 2 for those with diagnosis B all those diagnosed with ASD would need reassessing to allocate them another diagnosis in order to meet the eligibility criteria for the services. Obviously for some it would be obvious they had diagnosis A or diagnosis B (although this would still take time to make in official) but for others it would require a more in depth assessment. This would be a fair undertaking given the current waiting lists. And what would you do while people were waiting to be assigned to diagnosis A or diagnosis B?

I don’t think I have explained that well, but hopefully you get my drift.

Itisbetter · 23/02/2023 10:33

So why can't your kid do stuff other kids do, if his brain works exactly the same?. No I think you’re misunderstanding me. Let’s put it a different way. I think autism (or language disorder or learning disability or I guess any disability) affect the way we present and what we use our brains to do. I think if you took the most average person and subjected them to the stresses and constraints of the autistic experience (which is not uniform in severity or breadth) then you would see similar deficits and “strengths”, this is why we see pseudo-autism (icd 11 I think) or in common speak why neglect can mimic autism.

JarByTheDoor · 23/02/2023 10:44

So what non-brain thing is it that produces the autistic experience? Are you thinking of the sensory overwhelm model of autism? And given the plasticity of the brain, that would surely produce a brain that works differently, over time?

Itisbetter · 23/02/2023 10:45

So let me explain a bit how the merging has impacted me. For example @Cuckoosheep has described her sons difficulties and strengths and it’s been (for me) a really lovely and intriguing read. Why? Because many of the things she describes are strikingly similar to my grown child’s. How exciting would it be if there was a way of starting a thread and gathering “people like us” together? It’s actually extremely problematic to do that. Without the language and the descriptors we just end up having pages of people explaining HFA and how their lives are hard too. It isn’t a question of others not having difficulty. Everyone can have an opinion on what presentation is harder just like anyone can have a discussion about “would you find it harder to be deaf or blind?” But deaf and blind don’t face the same obstacles and deaf-blind is something again.

Itisbetter · 23/02/2023 10:46

All life experience warps us.

Pheasantplucker2 · 23/02/2023 10:53

Reading this thread with interest. I have 3 children, 2 diagnosed with autism and ADHD, one who is showing signs much later on in life (13) and a husband that we've realised is almost certainly autistic with ADHD.

One thing I've really begun to understand about them all is that autism is a dynamic condition. My husband was always a bit "quirky", but until we started to really struggle with the kids (leading to diagnosis) he managed his environment very well. However, he had set up in his own business, largely working from home, in IT (surprise) and had arranged his whole life around his special interests and a working life he could manage.

When the kids came along he found that trickier. He changed jobs several times and wasn't happy, so went back to retrain. His dad died and he really began to struggle. I had absolutely no idea why my easygoing husband had suddenly become very rigid and controlling, and all the things that we'd previously enjoyed as a couple, especially spontaneous socialising, now were off the table as - we now realise - it gave him immense anxiety.

When his environment was more stable and he managed it, he could cope and enjoy socialising.

Then our eldest was diagnosed and a lightbulb went off.

All of them can present on any given day as level 1, level 2 and level 3. They are brilliant at masking and there are still accquaintances who have no idea that anyone in the family is autistic. For a long time it felt like a shameful secret, as our eldest didn't want anyone to know she was "different".

She then had a massive autistic burnout and hasn't been in school for a year, so everyone knew.

I totally understand the desire to categorise, which I think (in my own case) is driven by our desire to try and understand their struggles and help. However, every member of my family has different needs on different days, and these are largely driven by environment and expectation/stress.

JustKeepBuilding · 23/02/2023 10:55

How exciting would it be if there was a way of starting a thread and gathering “people like us” together?

That would need more than just splitting the diagnoses back up to what they were or something similar though.

Please correct me if I have got this wrong, but I I think you said under the old diagnoses your DS would be classed as having ‘high functioning’ autism - high functioning because there’s no comorbid learning disability and autism because there is a language delay.

Well my DS3 would also be in that category. But his presentation and needs are different. Although he still has significant needs and has an EHCP, HRC/LRM DLA.

So if the diagnoses were split and you started a thread you would start get a range of presentations and needs.

Itisbetter · 23/02/2023 11:23

Yes of course @JustKeepBuilding everybody is different within a diagnosis anyway and ds has other issues which impact his life anyway. I personally think it was clearer before and while I found a pp reasoning and attitudes unpleasant and antagonistic I do struggle with the present set up. It has made finding support harder, discussion more tedious, and I think totally nuked research.

Cuckoosheep · 23/02/2023 11:24

On a practical level how do those who want different diagnoses and different services see the split working? Especially given the long waits for assessments currently?

Initially for the most severe/ profound already dx: for child and young adults via ehcp annual review. There could be guidance on type of presentation/ profile/ needs (I'm laughing at myself typing this given how much some schools/ la pay to thelaw let alone guidance) and then via social care which should also be reviewed annually. The people I'm thinking of would require adult services.

If dx given as an adult it would be unlikely that they would fall into this category.

This is just one idea I'm sure with thought others could come up with more. I think doing nothing and keeping things the same isn't working. Fir me it's a bit like a social experiment gone wrong. It's incredibly unfair to have the two extremes of presentation sharing the same dx.

I'm also reading that those who fluctuate in presentation or those in the middle are concerned about their dx not having the same meaning if the more severe are taken out. To me I think this is the crux. The association of severe disability stops of gives the impression to others that someone with a lesser impact of autism doesn't have needs or is quirky whereas those advocating for the most severe see the dx as being changed so that it doesn't reflect the severity of need.

Cuckoosheep · 23/02/2023 11:31
  • by lesser impact I don't mean offence I'm just trying to use a short hand I'm sure the current people involved in yhe conversation understand what I mean.

This is a good example though if how conversation us stiffled because of the differing views and presentations within the dx.

JustKeepBuilding · 23/02/2023 11:33

@Itisbetter DS3 has other factors influencing his presentation, some of them co-morbidities and others completely unrelated.

@Cuckoosheep I see how your first paragraph could work, however separating into Diagnosis A or Diagnosis B would be via health rather education or social care and many don’t have health involvement with their EHCPs and even when they do they often don’t attend ARs.

If dx given as an adult it would be unlikely that they would fall into this category.

From this do you see any split not being like it was with autism and Asperger Syndrome? Because there were/are some adults that are/would have been diagnosed with autism, albeit high functioning, rather than Asperger Syndrome.

Itisbetter · 23/02/2023 11:38

I agree and realistically it isn’t really just about finding friends with shared experience. It’s more importantly about seeing outcomes.

What intervention helps and what doesn’t?

Do those devastating reports on life expectancy apply to you?

What is a more focused prognosis for your sort of autism?

What jobs do people thrive in?

How many are really unemployed?

What illnesses are prevalent?

Does severity increase with subsequent generations?

Who IS getting funding and support and who isn’t?

Whose mental health needs super surveillance?

to answer these and all the other questions we transparency and clarity about who we are talking about.

Cuckoosheep · 23/02/2023 11:41

@JustKeepBuilding yes I agree in regards to ehcp's which is why I was laughing whe writing it. The sen system is a whole other conversation but I just wanted to give an example of how it could be done.

I don't think going back to the old split is the right way forward. I personally think they should at least start with changing things for those most impacted even if that doesn't include my child and only includes strictly non-verbal/ non aac user or comorbid ld. Start with those for who the change to include others has made the most change to their dx.

JustKeepBuilding · 23/02/2023 11:47

Itisbetter But you don’t get clarity from just splitting back into Autism or Asperger Syndrome (or other equivalent names). You would still get a range of presentations and therefore answers to your questions.

More descriptors of needs etc. would achieve this. Maybe a bit like cerebral palsy - everyone with CP has CP, but different descriptors are used to describe individual presentations and needs.

I don't think going back to the old split is the right way forward.

If there was to be a change I agree with this.

Itisbetter · 23/02/2023 11:52

I’m not sure going back is the way forwards either, though I’m not sure it isn’t. I just genuinely don’t think it’s been a good move. I think self diagnosis doesn’t help at all and I do think late diagnosis is different.

JarByTheDoor · 23/02/2023 11:55

Yep @Itisbetter, it's good to be able to talk with people with comparable or similar experiences. This is why I said upthread that I wish people weren't jumped on so hard when they tried to find adjectives and descriptors like "severe" or "profound" or "low-functioning" or "non-verbal" to try to get their meaning across, without many useful suggestions being given of other ways they can briefly communicate how the individual they're talking about is affected.

My feeling is that from a logical categorisation perspective, adding some kind of modifiers to a broad diagnosis, to allow easy and quick communication, would make more sense than re-splitting the category.

Firstly, it's normal for things which are considered the same disorder medically to receive the same diagnosis regardless of severity, or to have subtypes that are expressed differently or happen in slightly different ways. Autism probably has multiple aetiologies, but looking at families, it would seem that at least some families have a heritable type of autism which can result in individuals with Asperger's type, classical type, and various other expressions all within one family, and it seems odd to have a family all inheriting the same basic thing, but ending up with different diagnoses because people wanted it to have a different name when it hit a certain threshold or fulfilled certain criteria.

When it comes to the different aetiologies, hopefully at some point they will be sorted out through research, and we'll know whether all these autisms are different causes of the same thing, or different things, and diagnosis can then be arranged accordingly. We probably need to wait quite a while for some of that, though.

Secondly, there's a question of how to split it. If you, for example, selected traditional "low-functioning autism" as the separate category, you would exclude people with extreme difficulties but an IQ over the threshold. If you wanted to exclude only people who would've had an Asperger's diagnosis in the past, you'll still have an awful lot of high-functioning adult autistics in the autism category who are clinically indistinguishable from those with Asperger's, unless you ask their parents about speech delay. If you split at threshold x, you'll always get people who feel they/the person they care for should be on the other side of it, or would get more/better/different help, or less discrimination and prejudice. If you split at two thresholds, probably even more disgruntled people. And to split, you have to either choose a yes/no criterion, a point on a linearly-measured criterion, or multiple criteria of either or both types, in which case you're going to hit problems if someone meets some but not others.

And however you split it, you have the problem that ten autistic three year olds who fit in the same category will potentially grow up into ten adults with radically different outcomes, meaning reassessments might have to happen and diagnoses be changed, which is more disruptive than moving category within the same diagnosis.

Thirdly, it would be yet another huge overhaul to diagnostic services, other service provision, research, and public awareness, that would all take time and effort and money.

I think there's more room for fluidity, flexibility, and multiple overlying categorisation systems if the diagnosis is kept broad. You could give an ASD diagnosis, and say that someone has profound symptoms, or is level 2 for support needs, level 4 for difficulties with communication, level 2 for sensory-seeking, level 1 for age-appropriate self-care, has/does not have LD/ADHD/DCD/SIB, or however you wanted to subcategorise it. The big chunk of people in the middle would be better served with a more flexible, multifaceted system IMO.

It actually makes little difference to me personally whether my diagnosis is DSM 5 ASD Level 1/ICD-10 Childhood Autism, as it is currently, or is changed to Asperger's syndrome or some new, more politically-acceptable name. I'm not likely to be near any of the new dividing lines, and I don't need to use my diagnosis regularly.

I'm not arguing for retaining the broader diagnosis for my own benefit, but instead for the reasons I've mentioned. (It would, though, likely benefit family members of mine, who I don't want to talk about online.)

(I also think there's far more room for public awareness of the middle area — I know that parents on this thread have commented on the public perception of autism as being all about Chris Packham and Greta Thunberg and people who can go on TV Asperger's dating shows, but showing people with this kind of presentation was in part a backlash to the existing picture of autism in the public imagination before Asperger's syndrome began to be diagnosed in the 1990s. Apart from bloody Rain Man, this tended to be of only very severe classical autism, often as it appeared before any modern interventions, and often in people who were institutionalised. People who would probably receive the proposed separate "profound autism" diagnosis do still get some media coverage: off the top of my head, Louis Theroux's Extreme Love — Autism documentary about a decade ago springs to mind. But there's a lot less about the autistic people who are neither as profoundly affected as that, nor able to live an apparently perfectly normal, if perhaps a little unusual, life.)

Itisbetter · 23/02/2023 12:56

@JarByTheDoor so annoying not to be able to answer all that with my thoughts but I will give it a go. Apologies if I pick out bits I know responding to detail can seem aggressive but I’m just pondering not drilling in iykwim Brew

This is why I said upthread that I wish people weren't jumped on so hard when they tried to find adjectives and descriptors like "severe" or "profound" or "low-functioning" or "non-verbal" to try to get their meaning across I agree the single most difficult thing is to find words which hold common meaning and don’t upset.

Firstly, it's normal for things which are considered the same disorder medically to receive the same diagnosis regardless of severity, or to have subtypes that are expressed differently or happen in slightly different ways. I don’t think they were thought the same disorder medically and if we focus on the early years precocious language and delayed language aren’t naturally a fit. In fact merging HFA and Asperger’s is more like merging hyperlexia and dyslexia.

When it comes to the different aetiologies, hopefully at some point they will be sorted out through research, and we'll know whether all these autisms are different causes of the same thing, or different things, and diagnosis can then be arranged accordingly. We probably need to wait quite a while for some of that, though. making groups less focused is unlikely to help research though and this is one of the major failings (imo) of the new classification. Not only has it impacted future research I think it’s smothering older finding as we aren’t talking about the same populations. As for the whole shutting down genome projects to protect the most able…we’ll just 😡

Secondly, there's a question of how to split it. If you, for example, selected traditional "low-functioning autism" as the separate category, you would exclude people with extreme difficulties but an IQ over the threshold. but again you are assuming the degree of difficulty is the defining factor. If you wanted to exclude only people who would've had an Asperger's diagnosis in the past. This isn’t my intent, I want to identify different populations so that research, healthcare and education can be appropriately distributed. Describing this as excluding I think is too emotive. Nobody will be left homeless.

Thirdly, it would be yet another huge overhaul to diagnostic services, other service provision, research, and public awareness, that would all take time and effort and money. yes but if the present system marginalises huge sections of the autistic population, stifles debate and research and leads to more difficulties than it solves then what is the choice?

I think there's more room for fluidity, flexibility, and multiple overlying categorisation systems if the diagnosis is kept broad. You could give an ASD diagnosis, and say that someone has profound symptoms, or is level 2 for support needs, level 4 for difficulties with communication, level 2 for sensory-seeking, level 1 for age-appropriate self-care, has/does not have LD/ADHD/DCD/SIB, or however you wanted to subcategorise it.. I think levels and numbers are not always helpful.

The big chunk of people in the middle would be better served with a more flexible, multifaceted system IMO. I think there might be a bigger chunk at the bottom but obviously it’s not easy to find out.

Cuckoosheep · 23/02/2023 13:15

@Itisbetter thank you for your reply to this as it is what I was thinking but you managed to word it much better than I could..... I have many more words snd emoji for the genome project shut down.

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