Those with severe autism need their own diagnosis

[Cubic]

Ok so, I'm being brave and putting my head above the wall. This is a long one as it's an emotive topic.

The autism diagnosis changed in the dsm (American diagnostic manual) in 2013, than hit the UK too and our diagnosis changed to include people who would have been diagnosed previously with other conditions; Aspergers, childhood disingenerative dissorder, retts and pdd nos. Aspergers had links to the nazis, there were concerns that the other conditions wasn't taken as being as serious/ a disability, funding wasn't aimed at those who were seen as "higher functioning".

The dsm gave levels 1-3 depending on support needs. Some people fluctuate and some just stay at level 3 all the time.

Until this point autism was seen as a severe disability. Those with the diagnosis were seen as being disabled, this wasn't questioned.

The diagnosis changes linked with the neurodisability movement and self diagnosis has meant that those with the most severe impairments are now not as catered for. Many of those with the most needs lack the ability to communicate and therefore can't advocate for themselves. Their carers are exhausted too.

Those who would be seen as more able can suffer with severe mental health issues that aren't always treated due to them having the autism diagnosis.

Profound autism is being tabled as a way to seperate the diagnosis so that those who have extremely limited communication, low iq and require constant life long care etc due to their autism not mental health can have seperate diagnosis.

This is opposed by many of those who are more able. One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.

I support the profound autism diagnosis. I think there is a world of difference between those maybe diagnosed later in life, who work and have family and friends to those who require support in every area of their life for their full life (all the time, not fluctuating), with no communication who can't access our world.

This doesn't mean I don't recognise the needs of those who aren't profound.

IABU for support a seperate diagnosid
IANBU for wanting a seperate diagnosis for those with severe/ profound autism.

• knowing how these threads can go, I may not reply to every question, statement or post.

** I'm aware that terms like high/ low functioning aren't supported by many of those who are able to communicate well.

We get increasingly less empathy as he grows, if that’s helpful!

I worked for over a decade in SENd schools. Generally with children who were verbal, and academically maybe 2-3 years “out,” all of them with either real anxieties and phobias, or significant behavioural challenges. Many of them would now, in the white paper, be expected to transition back to mainstream or additionally resourced hubs, and none of them would cope.

I am more than aware that those children and families like theirs have challenges. I don’t have to worry about the same things they do.

I don’t think that other SENd individuals and families don’t have challenges just because they differ to ours. I think we have different ones.

I agree with you. I hate to be that Daily Mail person but truly, every other child we know is either diagnosed ND or their parents are seeking a diagnosis and it’s looking likely they will get one. Its evident on here as well - virtually every thread has a parent rocking up to drop in that their child is ASD/ADHD, even if the thread is about mortgages or whether Uggs are still in fashion or whatever completely unrelated topic.

I think something is going off course with child development, children just aren’t as capable and stable as they were 20 years ago. Of course I think back to other kids that weren’t diagnosed back then when they probably would be now, but nothing like the numbers we see at present.

We seem to be seeing a rise in everything - severe autism with no communication or understanding, ‘anxious’ teenagers who spend their days online in their bedroom and threaten self harm if their parent doesn’t continue to enable their lifestyle, explosive kids with significant anger issues who cause entire classrooms to be evacuated.

All of the above was virtually unheard of 20 years ago, and there were no ‘institutions’ then.

I think it would simply be too hard to categorise.

Say you do have profound autism, and then also garden variety autism as a hypothetical. Apologies, I can't think of a better term for it.

There would still be people within the latter group who's needs are so vast from other people's.

There are people in that latter group like my uncle, who started his tech business years ago and built databases for the NHS and social care services, sold it for millions whilst remaining the head of their internal management as a safeguarding lead using his job to assess risk, and now has been able to retire early, however he still lives in an ex-council house with his mum because he has such significant restricted and repetitive routines as well as sensory challenges and has never had a girlfriend and only talks to his ex-colleagues online by email and spends all day in his bedroom except at 1:30 and 6:30pm to come downstairs to eat the same meals every day, to my cousin, who is past mid-life, completely non-verbal, but lives mostly independently in an annexe where he has support for a few hours a day, but takes educational courses for fun because he thrives on knowledge but eats a varied diet and doesn't respond negatively to spontaneity, to my son, who is significantly, and I mean significantly speech delayed. I can't say he is non-verbal, because he knows words, he can speak, he understands more words than he can say, but can't follow adult led instructions, can't assess risk, can't tell his classmates when they're too close or tell a teacher when he needs space, elopes, can't tell me when he is ill, can't engage his attention for long enough to absorb information in a mainstream setting but absolutely thrives when education is tailored to his needs, to my cousins child who can talk, can assess risk, can plan, can shower, but has to have everything done to a strict routine, speaks extremely bluntly and can't make or maintain relationships, and his emotions go from 0-60 in a blink of an eye with no build up.

I am in favour of parents of profoundly autistic children pursuing what is in their child's best interests and if that is a separate diagnosis then it is not my place to say otherwise, but I just think there's so much variance in what would not be considered profound autism for it to only be split into 2 separate categories, or even 3.

I am complacent in the categories of impacted social, communication and interaction and restricted and repetitive behaviours simply because I'm not sure how else it could reasonably be categorised however I am also aware that I am not profoundly autistic, and I am speaking from a place of privilege as well as ignorance to first hand experience of being a parent/carer of someone with profound and complex needs.

I think what would be better is for people to understand that everyone with autism will have their own mix of needs, abilities and disabilities, and start from there.

Sorting into a binary “profound and non-profound” is likely to muddy the waters more/ make things less clear than it is to help.

Wrong

Dr. Leo Kanner published the first systematic description of this condition in 1943, marking the beginning of modern autism understanding.

Kanner’s syndrome, or classic autism, is a neurodevelopmental disorder identified by Dr. Leo Kanner in 1943, characterized by significant social, communication, and behavioral challenges, often presenting in early childhood. It is generally considered the most severe form of autism, featuring profound communication deficits, intense routines, and a strong preference for isolation

Do you have a close family member with profound autism?

Has anyone read about Donald Triplet who was Kanners Case 1 for autism.

I dont think he would meet the criteria for a profound autism diagnosis.

The stats don’t back you up. Both are undiagnosed in this country and it’s hard to get diagnosed.

What Kanner identified as autism was not profound autism as it is being discussed on this thread. He characterized the condition as children that originally demonstrate (1) extreme aloneness, (2) imperviousness to people, and (3) desire for repetition. However, he critically also talks about there being "gradual compromise" over time with improvements in social communication, changes in repetitive behavior and bringing more people 'in'. Kanner's autism is not profound autism. It's actually the group that I've been highlighting that are severely impacted but aren't sitting within the current definition of profound autism.

I'm not saying that profoundly autistic people aren't autistic, but please stop the notion that they're somehow the original autistic people and everyone is stealing their diagnosis from them.

https://simonsfoundation.s3.amazonaws.com/share/071207-leo-kanner-autistic-affective-contact.pdf

[He also blamed the parents, but that's a different story!]

I firmly believe that there are no more ND people, it is simply that where the world was navigable for most ND people 30 years ago (although often at tremendous personal cost( the way the world is set up now, that is virtually impossible. I now live in an area which has a lot fewer pressures more of a homogeneous and slower culture and the numbers of kids with diagnosed ND is far lower than when we lived in Birmingham, the kids are more relaxed and less “street wise” they are staying kids far longer.,

Fair enough.

I don’t think it’s helpful to group people with no overlapping symptoms/ issues as one homogeneous group though under one diagnosis.

I do think it disproportionately negatively impacts those who are on the most severe end.

It does, and this new definition of profound autism risks having that same negative impact on a group of very severely impacted people. Hence why it needs to be discussed in detail and (where possible) the views of those people taken into account.

This is, however you play it, about saying that one group of autistic people is more impacted than others. It's dangerous and it shouldn't be linked to any discussion of expansion of the definition of autism because the group of people who stand to lose are not at the edges of the autism diagnostic spectrum.

I'm not clear who would 'win' and what they'd win to justify the potential risk to this group being classified as less impacted when they are also severely impacted. No one is looking to take support away from people who would qualify as profoundly autistic as described on this thread. Well not taking it away from them and giving it to other autistic people anyway.

I don't suppose anyone was watching sky news in the last ten minutes where they had coverage of Shabana M (home sec) giving a statement on the Southport murder inquiry and the Tories response?

AR's autism diagnosis has been raised as an issue, with agencies looking at his vulnerabilities rather than the publics. Part of the Conservatories response was to reference the Kings speech where he said that autistic people should be sectioned less. The Tories asked if Lab would go back on this.

Honestly, my ds doesn't have the ability to understand any of what may have influenced AR. He just can't, people like him are never going to be able to commit this sort of crime. I don't want my son sharing a diagnosis which is being touted (by some) as a factor in crime. I'm aware these crimes are rare, thankfully but I have noticed that when crimes are commited that are National news it is common for the person involved to have autism or for there to be queries about this.

Just an incidently muse while both this thread is running and this is in the news.

The study I linked earlier would see ex-aspergers as "the core traits" - and the other groups as the core traits with mental health issues and/or developmental delay. The level of support "profoundly autistic" people need comes from the developmental delay, not from the original autistic traits.

I'd prefer having better terminology (and really like the quadrants), because it allows basic understanding quickly.

I don't want myself or my daughter sharing a diagnosis which is being touted (by some) as a factor in crime either though. I'm not sure anyone would.

What an appalling post! Words fail me.

All sorts of people commit crimes.

I haven't looked at the detail but are you sure that's right? Intellectual disability / mental health issues were never part of the reason someone would be diagnosed as Aspergers rather than autistic. The difference was linked to verbal language development primarily. There might have been another difference as well (and I can't be bothered checking) but it wasn't intellectual/mental health related. Any classification that uses those to distinguish is fundamentally different to the Asperger's/autism classification.

It is being covered in the inquiry as a factor.

My son may commit a crime but it wouldn't be pre-meditated and would likely be a reaction of some sort to a stimuli. I think this is another area of concern and is another reason for havinga seperate diagnosis. People like my son cannot do this. I don't want him having the consequences of others actions.

What are you talking about? Just awful.

But I think then what you want is a separate diagnosis that isn't autism. Autism is a social communication disorder. It does mean people are vulnerable to influence sometimes (no idea if that's the issue here). The fact that your son doesn't have the ability to understand at all is not because of his autism, but because of his intellectual disability.

I’m okay with it being used as a factor in terms of crime - the autistic boys I worked with were very easily led, and many of them were engaging in County Lines.

I am never okay with it being used as an excuse, because as much as some autistic children and young people can be lead into crime (for example), we can teach them to be better.

I agree, I think the rise in kids (and adults) not coping is due to this.

I say this as a late-diagnosed person, who would have benefitted from early diagnosis but who basically managed mainstream education. (Work of work has been different/a disaster, but due to avoidable mental health reasons, resulting from parenting issues and not knowing I was autistic).

You are right, I'm oversimplifying here with the asperger.

What I wanted to say is that one group is "core traits" = autistic. And the other groups are "autistic plus something"

Its being covered as a factor in that his behaviour was wrongly attributed to autism which led to a failure to appropriately address the behaviour.