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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
BadNomad · 20/02/2023 18:34

Itisbetter · 20/02/2023 18:19

What if the experts say there needs to be a learning disability present to get a diagnosis of severe autism? Neither of your children will qualify as severely autistic then. Will you be happy with that?

I don’t think my child is severely autistic at all. I know he is severely language disordered. I know he has HFA, and I know that he is significantly disabled. If experts said that their had to be a LD to get a dx of severe autism, I would observe that that’s exactly what the term LFA referred to.

Would “I be happy with that”? Well for me the major negative of the merging of dxs is that ASD and the appropriation of the term HF to mean “can pass for NT” means that there aren’t quick descriptors for ds so it probably would be easier, yes.

HF doesn't mean "can pass for NT". It never did. All it means is there is an absence of LD.

What about the rest of my questions. How would you determine if a 3-year-old is going to be so severely impacted by their condition that they will never live independently?

JarByTheDoor · 20/02/2023 18:36

Cuckoosheep · 20/02/2023 18:24

@JarByTheDoor scautish is that you?

If you have genuine accusations to make, please do it via the reporting system rather than derailing the thread.

BadNomad · 20/02/2023 18:36

Cuckoosheep · 20/02/2023 18:33

"What if the experts say there needs to be a learning disability present to get a diagnosis of severe autism? Neither of your children will qualify as severely autistic then. Will you be happy with that?"

Yes I would because that description then wouldn't fit him, it wouldn't be true. It would also mean the group of people in his dx has got smaller as they would be removed. It would be a step closer to having a more meaningful dx. As I've said earlier I'd like more language, descriptors, different dx especially with advances in genetics.

I am really interested in why people who don't have severe autism/ lfa/ other end of the spectrum/ whatever term you want to use don't want the dx splitting? So far it seems to be because being associated with more severe people stops other people minimising their needs? Is there any other rationale please?

Same question to you. How would you determine if a 3-year-old is severely autistic? How would you apply that diagnosis.

Cuckoosheep · 20/02/2023 18:42

"Autism is very obvious in some children from the start. But you have no idea how they will progress. You can't know until interventions and treatments have been tried if progress will be possible. But you need a diagnosis to get interventions and treatment right?"

We were first strongly alerted/ told/ hinted at that ds had autism at around 18 months. He was dx at two. It was really that obvious. He has made huge progress, the kind of progress that I wouldn't allow myself to think about years ago znd accomplished many things we were told he wouldn't do. He's had 1:1 or 2:1 since nursery constantly, had a min of weekly slt - aac device, symbols and signs used acrods all settings, been under sensory ot since he was 2 with a min of monthly input but more as required, amazing schools with great communication, dietitians, a sensory room at home, input 52 weeks a year not just term time, home and education trained in support together for consistency. Do a massive amount of great support, the best we could get. He's still clearly got severe needs.

So to answer this I think it's obvious who would be severe at 3.

Cuckoosheep · 20/02/2023 18:45

@BadNomad i can't answer all questions straight away, I was answering i just have to start n stop alot due to having ds in the room.

I answered yours please would you answer mine?

I am really interested in why people who don't have severe autism/ lfa/ other end of the spectrum/ whatever term you want to use don't want the dx splitting? So far it seems to be because being associated with more severe people stops other people minimising their needs? Is there any other rationale please?

Itisbetter · 20/02/2023 18:48

@BadNomad I’d be really interested in this too.

I am really interested in why people who don't have severe autism/ lfa/ other end of the spectrum/ whatever term you want to use don't want the dx splitting? So far it seems to be because being associated with more severe people stops other people minimising their needs? Is there any other rationale please?

Pira · 20/02/2023 18:50

@Cuckoosheep I tend to agree. My DS's differences only became apparent when he got to school; nursery hadn't flagged anything. He hit all milestones on time and is very independent. He can look after himself. This was evident from the age of 3, though he is socially quirky.

My friend has an autistic DS, age 4, and it is already abundantly clear that his support needs will be far, far greater than my DS.

Itisbetter · 20/02/2023 18:55

@BadNomad
HF doesn't mean "can pass for NT". It never did. All it means is there is an absence of LD. yes I’m VERY aware of that but you must be aware of people using “FUNCTION” to describe how well they function in the world, if not it’s been discussed multiple times on MM and in this thread.

What about the rest of my questions. How would you determine if a 3-year-old is going to be so severely impacted by their condition that they will never live independently? I think we’d probably have a much clearer view of that if we had more accurate descriptors. It’s one of the main reasons for dx isn’t it? To answer the question WHAT IS THE PROGNOSIS?

BadNomad · 20/02/2023 18:56

Cuckoosheep · 20/02/2023 18:42

"Autism is very obvious in some children from the start. But you have no idea how they will progress. You can't know until interventions and treatments have been tried if progress will be possible. But you need a diagnosis to get interventions and treatment right?"

We were first strongly alerted/ told/ hinted at that ds had autism at around 18 months. He was dx at two. It was really that obvious. He has made huge progress, the kind of progress that I wouldn't allow myself to think about years ago znd accomplished many things we were told he wouldn't do. He's had 1:1 or 2:1 since nursery constantly, had a min of weekly slt - aac device, symbols and signs used acrods all settings, been under sensory ot since he was 2 with a min of monthly input but more as required, amazing schools with great communication, dietitians, a sensory room at home, input 52 weeks a year not just term time, home and education trained in support together for consistency. Do a massive amount of great support, the best we could get. He's still clearly got severe needs.

So to answer this I think it's obvious who would be severe at 3.

No, it's not obvious. A diagnosis needs to be measurable to be assigned. Could anyone have looked at your son at two-years-old and said "he is definitely severely autistic and always will be"?

I didn't walk until I was 2-years-old. I never crawled. I didn't speak until I was in 5-years-old. I didn't make eye contact. I didn't point. I didn't play. I couldn't eat anything with lumps. I didn't respond to SLT. I used to sit in the doorway and bang my head against the frame. To anyone's eyes I was obviously autistic. I probably would have gotten a severely autistic diagnosis if that was a thing. But clearly I'm not severely autistic. You can not predict progress.

BadNomad · 20/02/2023 18:58

Cuckoosheep · 20/02/2023 18:45

@BadNomad i can't answer all questions straight away, I was answering i just have to start n stop alot due to having ds in the room.

I answered yours please would you answer mine?

I am really interested in why people who don't have severe autism/ lfa/ other end of the spectrum/ whatever term you want to use don't want the dx splitting? So far it seems to be because being associated with more severe people stops other people minimising their needs? Is there any other rationale please?

I've already answered this. More than once. I am not going to keep repeating myself when it is clear that my response isn't good enough.

BadNomad · 20/02/2023 19:01

Itisbetter · 20/02/2023 18:55

@BadNomad
HF doesn't mean "can pass for NT". It never did. All it means is there is an absence of LD. yes I’m VERY aware of that but you must be aware of people using “FUNCTION” to describe how well they function in the world, if not it’s been discussed multiple times on MM and in this thread.

What about the rest of my questions. How would you determine if a 3-year-old is going to be so severely impacted by their condition that they will never live independently? I think we’d probably have a much clearer view of that if we had more accurate descriptors. It’s one of the main reasons for dx isn’t it? To answer the question WHAT IS THE PROGNOSIS?

No one knows the prognosis of a 3-year-old.

Cuckoosheep · 20/02/2023 19:02

@BadNomad "it's not obvious. A diagnosis needs to be measurable to be assigned. Could anyone have looked at your son at two-years-old and said "he is definitely severely autistic and always will be"?"

Yes and they did. We were told all sorts by nhs professionals, interestingly enough the progress he made and makes we attribute to the independents not the nhs as they don't have the time to give the level of input he needs and the specialism in some areas.

You still haven't answered my question and I am trying to answer yours.

Ca1mingC1arySag3 · 20/02/2023 19:03

You can’t pigeon hole and you definitely can’t predict. I had literally no idea what shit storms we had ahead. My children were clearly on the spectrum at 3 but just a little bit quirky. I wonder if 1 will ever be able to live independently now. I had no idea of the utter trauma and amount of services that would lie ahead at 3 with both and wouldn’t have predicted ever that one would have ended up on full PIP and be in and out of hospital. By contrast the assumption with their cousin was that he’d never live independently but pretty sure he could now.

Cuckoosheep · 20/02/2023 19:03

BadNomad · 20/02/2023 18:58

I've already answered this. More than once. I am not going to keep repeating myself when it is clear that my response isn't good enough.

I genuinely don't know your response to this so I'm asking in good faith to humor me please and answer it again. I think it'd be helpful to the discussion.

Itisbetter · 20/02/2023 19:08

No one knows the prognosis of a 3-year-old.
well that’s not really true of all conditions is it? What is it that makes you think autism is SO different that prognosis is so open ended? Could it be that the criteria is so open it is difficult to draw conclusions?

JarByTheDoor · 20/02/2023 19:48

BadNomad · 20/02/2023 18:56

No, it's not obvious. A diagnosis needs to be measurable to be assigned. Could anyone have looked at your son at two-years-old and said "he is definitely severely autistic and always will be"?

I didn't walk until I was 2-years-old. I never crawled. I didn't speak until I was in 5-years-old. I didn't make eye contact. I didn't point. I didn't play. I couldn't eat anything with lumps. I didn't respond to SLT. I used to sit in the doorway and bang my head against the frame. To anyone's eyes I was obviously autistic. I probably would have gotten a severely autistic diagnosis if that was a thing. But clearly I'm not severely autistic. You can not predict progress.

This is part of why it's so hard to agree on whether and how to subdivide the autism category, and why in my opinion it makes most sense at the moment to have a single overarching diagnosis with multiple flexible ways of describing and sub-categorising the individual's current characteristics and needs, their medical history (both personal and family), and anything else that's thought useful to subcategorise by.

At an age when BadNomad didn't speak, couldn't access therapies, barely walked, and was self-injurious, I could speak fluently with a large vocabulary and unusually adult sentence structure and word choice, could read anything put in front of me by age 3, happily interacted and shared my many (many) opinions with the adults around me, and appeared not to require any therapies, adjustments, or alertness to potential emerging difficulties. It's likely that until recent years, an adult assessment would've resulted in a high-functioning autism diagnosis for BadNomad and an Asperger's one for me, two groups that are widely considered clinically indistinguishable from the other as adults outside of early childhood history (assuming BadNomad is in the group of high-functioning autistics who communicate via speech). This is part of why the diagnoses were merged — if it gives no useful information about the underlying cause, our current needs or difficulties, prognosis, or anything else, why is it important that our diagnoses communicate whether we were late learning to speak?

It seems to me as though the current category of autism is a combination of people with the same underlying issue leading to a range of different problems, trajectories and outcomes, and people with different underlying issues which have similar problems, trajectories and outcomes, and all combinations of the above. Without a full understanding of all of these, and without a strong justification for exactly what any splitting of the category into two or more different diagnoses is intended to achieve, confusion will ensue, and individuals will find that neither diagnosis really suits, or that they move between diagnoses.

It's also important in this discussion to determine what exactly diagnosis (as a whole concept) actually is, how it categorises and why, its purpose(s) and function(s), what doctors and other professionals use it for and how they understand it, what we as patients and carers/parents want and expect from it, and the ways it's used across medicine and society. This isn't at all simple, and has been the subject of reams of discussion within the philosophy of medicine.

JarByTheDoor · 20/02/2023 20:00

It's also important in this discussion to determine what exactly diagnosis (as a whole concept) actually is, how it categorises and why, its purpose(s) and function(s), what doctors and other professionals use it for and how they understand it, what we as patients and carers/parents want and expect from it, and the ways it's used across medicine and society. This isn't at all simple, and has been the subject of reams of discussion within the philosophy of medicine.

This is why I commented earlier on someone's statement about diagnosis meaning similar symptoms, and gave a well known example (Covid) of an illness where this is not the case. I'm not just nitpicking for the sake of nitpicking — it's important to the discussion that we first have a shared understanding of what diagnosis is and does, and what we want it to do.

Cuckoosheep · 20/02/2023 21:01

"It seems to me as though the current category of autism is a combination of people with the same underlying issue leading to a range of different problems, trajectories and outcomes, and people with different underlying issues which have similar problems, trajectories and outcomes, and all combinations of the above. Without a full understanding of all of these, and without a strong justification for exactly what any splitting of the category into two or more different diagnoses is intended to achieve, confusion will ensue, and individuals will find that neither diagnosis really suits, or that they move between diagnoses."

What I would like a change in the diagnosis to accomplish is for it to better represent my child. I'd like to be able to he has x diagnosis and for there to be an automatic understanding of how his needs either present to other people or how they impact him similar to how saying autism prior to the mixing of dx did. Currently saying autism doesn't accomplish this and the majority of people who don't know him or haven't et someone with autism like him understand autism to be quirky, the person who is socially a bit awkward that kind of thing.

The use of autism as an identity now by some I find really shocking especially those who just identify rather than formalise their dx, it's a disability not a way of life or a life choice. I do know families who have more than one person with a dx and they are "high functioning" (I'm limited by the terms but I'm sure you can gather what I mean as a colloquialisms rather than a proper term) they play to their strengths and live great full lives. Parents aren't very social but have great carers especially now they can wfh, kids are fully supported and have good ehcps which were fought for with assessments privately funded. They see themselves as 'autistic' it's part of who they are, they wouldn't change it (we've spoken many times about it, we're quite close). I would, you'll notice I do refer to my son as 'has autism' for our family it's a horrible condition and I know this will offend it isn't intended but I honestly would give him a cure if there was one or take it from him if I could.

I'd like services and research to be better geared towards him rather than the verbal articulate 'face' of autism.

I wonder how would you feel if a childhood dx of "childhood autism" was given with a reassessment as a teenager before adult services kick in, in order to give a thorough dx? I don't think this will happen given the state of the nhs and better dx at this age would mean LA's would have to step up their provision for more people going into adult services.

Cuckoosheep · 20/02/2023 21:17

Just to say my answer above was mainly in response to "confusion will ensue, and individuals will find that neither diagnosis really suits" as people are already confused and the diagnosis now doesn't suit children like my son. I guess it isn't perceived as the serious disability it is because many with the dx aren't as impacted or if they are it's dye to mental health issues.

Cuckoosheep · 20/02/2023 21:27

The genetic sutism study that was stopped because it went against autistics or it could be used for eugenics is good example of how research is being stopped because autism is seen by some as an identity rather than a condition. If genes can be associated definitely causing people to present like my son why shouldn't there be options during pregnancy or conception if Ivf? I love my son but knowing what his life is like and being so scared of the future and what will happen when we're not around I would have valued being given the option.

There was a part on the news about sisters with a genetic condition one had what was dubbed the most expensive medicine in the world to cure her, it basically rewrote some of her genes so she will live a normal life. Her sister couldn't have it and she will keep the condition. Wouldn't it be amazing if children like mine could have benefited from this?

Itisbetter · 20/02/2023 21:54

It's also important in this discussion to determine what exactly diagnosis (as a whole concept) actually is, how it categorises and why, its purpose(s) and function(s), what doctors and other professionals use it for and how they understand it, what we as patients and carers/parents want and expect from it, and the ways it's used across medicine and society. This isn't at all simple, and has been the subject of reams of discussion within the philosophy of medicine.. This is what I thought we were attempting to share thoughts about.

JarByTheDoor · 20/02/2023 22:34

What I would like a change in the diagnosis to accomplish is for it to better represent my child. I'd like to be able to he has x diagnosis and for there to be an automatic understanding of how his needs either present to other people or how they impact him similar to how saying autism prior to the mixing of dx did.

This might have been a nice perk of the old split system that you were able to take advantage of, but it's not one that diagnosis always does, or necessarily should, confer. I can see why you're frustrated to have lost such a useful shorthand, but it's not a convenience someone is automatically entitled to when they get a diagnosis of something. Lots of diagnoses cover a vast range of severity from barely-noticeable to completely incapacitating. Lots of diagnoses cover wildly varying presentations with completely different symptoms. ASD is no different.

Just to say my answer above was mainly in response to "confusion will ensue, and individuals will find that neither diagnosis really suits" as people are already confused and the diagnosis now doesn't suit children like my son. I guess it isn't perceived as the serious disability it is because many with the dx aren't as impacted or if they are it's dye to mental health issues.

Many parents have to give a short explanation of their child's particular difficulties and needs and can't expect a single word to do the job. The broad ASD diagnosis suits your child, just as the broad diagnosis of asthma suits the child with life-threatening brittle asthma. I'm sure it's frustrating for that parent of a severely asthmatic child if people think of asthma as just getting a bit wheezy sometimes, but that doesn't mean mild asthma isn't asthma, and I never see asthma parents campaigning for mild asthmatics to be split off into a separate category with another name. (I know I'll now likely get a response delineating all the ways asthma is different from ASD, which is really not the point, and ignoring everything else I've said, but such is MN.) When I talk about neither diagnosis suiting, I don't mean people who don't like that their diagnosis also covers other people who are different, I mean people who straddle the categories, and with autism you'd likely get that problem again if you re-split it.

Being able to quickly communicate about an individual is one of the purposes of a diagnosis, but it's not the only one, so it can't be the sole consideration. You could campaign for a split back into completely separate diagnoses depending on severity, on the basis that for some people, it would sometimes be a little more convenient, but your preference would have to be weighed against the medical, scientific and practical reasons that the categories were merged in the first place, the impact on all the millions of other people who have or would merit an ASD diagnosis, on science and research, on public confusion, on the logical consistency of the categorisation, and so on. IMO the current state of knowledge on ASD doesn't allow us to cleanly divide ASD the way you would like.

However, I would like to see an end to people jumping down the throats of those who try to find language to accurately communicate what the autistic people they care for have difficulty with. If people are made to feel they're not "allowed" to describe their child as having "severe" or "profound" autism, or to refer to them as non-verbal or low-functioning or having challenging behaviour, are not told any suitable or useful terminology they can use, and are simply told that all autistic people are autistic and that "mild describes how you experience my autism", then it must be tempting to wish you could go back to just being able to say "autistic" and it mean "like my kid".

OneFrenchEgg · 20/02/2023 22:36

The use of autism as an identity now by some I find really shocking especially those who just identify rather than formalise their dx, it's a disability not a way of life or a life choice. I do know families who have more than one person with a dx and they are "high functioning" (I'm limited by the terms but I'm sure you can gather what I mean as a colloquialisms rather than a proper term) they play to their strengths and live great full lives. Parents aren't very social but have great carers especially now they can wfh, kids are fully supported and have good ehcps which were fought for with assessments privately funded. They see themselves as 'autistic' it's part of who they are, they wouldn't change it (we've spoken many times about it, we're quite close). I would, you'll notice I do refer to my son as 'has autism' for our family it's a horrible condition and I know this will offend it isn't intended but I honestly would give him a cure if there was one or take it from him if I could.

This is what I touched on earlier but the conversation moved past it.

JarByTheDoor · 20/02/2023 22:41

This is what I thought we were attempting to share thoughts about.

I was explaining why I responded to someone else's sweeping statement, about how a diagnosis means having similar symptoms, to say that that isn't the case, and gave an example of a common condition which doesn't fit that definition.

Then when hassled about how that condition is different to autism, I tried to explain that in that specific answer, I wasn't talking about autism, I was talking about diagnosis and what it is and is not.

The paragraph of mine you quoted was about the importance to this discussion of what diagnosis is and what it's for in general, as well as specifically in autism.

Cuckoosheep · 20/02/2023 22:55

@JarByTheDoor you yourself just referred to severe asthma and mild asthma in your reply. I can't imagine using those descriptorswith asthma would cause as much controversy as with autism. I appreciate you've spoken about this in your last paragraph. If it was accepted that for children like mine we could say severe or profound without the expected responses and it was common place, many of which have been displayed on this thread I don't think it would be as big of an issue. Using those descriptors in some circles is classed as ableism, also shown on this thread.

In the absence of being able to adequately describe to distinguish a new dx is what it would take.

Incidently, it wasn't a perk it was factual to the dx, it only stopped being when the dx was changed so that it included many more presentations. To use someone else's example it's a bit like having a load of apples, then getting pairs but renaming them apples. You need an apple but no one really knows if you mean an apple or a pear.

Surely having a name for something and people knowing what it means is the whole point of naming it? Otherwise why bother at all?

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