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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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.

I agree, grading from 1-5 would be far better in my opinion with a higher grade 5 meaning higher functioning and grade one needing support in more areas

I must have missed that. Which poster said she ‘wasn’t autistic enough?’ All the posts I saw just pointed out that there is a considerable difference between her functioning and that of a profoundly autistic person who is unable to communicate at all, not that one was more autistic than the other. Just that the needs are different.

I must have missed that. Which poster said she ‘wasn’t autistic enough?’ All the posts I saw just pointed out that there is a considerable difference between her functioning and that of a profoundly autistic person who is unable to communicate at all, not that one was more autistic than the other. Just that the needs are different.

Thread about a thread with added digs. Real necessary with fifty posts left on this one.

I disagree. It’s common for additional threads to be made when the first is full.
I also think the conversation has kept mostly polite and on topic without the personal insults.
I am staying off it as I want the OP to have the opportunity to discuss her feelings without it becoming more personal attacks on posters from this thread.

Profound autism is the discussion, that it is seperated from others. We've spent a lot of time on this thread discussing other children too.

I agreed that it is appropriation. The conversation was about people with profound getting a different diagnosis, there was then the question of why should they when they had the diagnosis first (in my sons case he did have the autism diagnosis before the changes) before the changes.

I don't know how quickly this will fill up when I'm not reading it. You're welcome to not join in.

I haven't read that thread yet.

Well all I will say at this point is, my sibling who is the parent of a profoundly disabled child, wouldn't agree with you that my son's diagnosis is appropriation. He was happy for his nephew when we finally got a diagnosis of autism and we don't argue about our children's needs being different but accept that autism is a spectrum.

You're taking that comment out of context.

I'm not happy for anyone to get an autism diagnosis, not because of spite or the point of this thread but because for most people it means life long fights and having a disability. I am happy when people get their needs met or get access to support they need but I wouldn't be happy for anyone to have a disability. It isn't something I'd wish for.

I don't think there has been any post on this thread where people have said others shouldn't have their needs met. I know there was talk about resourses but that conversation can be applied to most subjects where the state fund the majority of support/ services.

I agree with you that autism is a spectrum and people do present differently. I hope your son and your nephew both get their needs met. I hope you and your sibling both get the support you need.

That would mean taking something from someone else to overshadow them. The change from the DSM-4 to DSM-5 wasn't a decision to include more people that wouldn't get any diagnosis at all, it was a decision to say these were always part of the same condition because they meet the same criteria within a spectrum, it was just badly categorised before hence the clinical decision to merge into a singular diagnosis. The change was just about fixing inconsistencies not expanding the diagnostic criteria. It isn't autistic people choosing to be given this specific diagnosis, it was a clinical decision.

People with lower support needs, higher cognitive function and more progressive development aren't taking anything away from autistic people with substantially higher needs. If they were then yes that would be appropriation. Their needs are widely different.

I am in agreement in many cases that need must be specified. If it helps in the context of using services then I do think it can be appropriate in some cases to state profound autism, as it gives a general idea as to the level of communication, comprehension, and behavioral responses that person will have in different environments, but it doesn't really specify what their needs are. Similarly saying low support needs doesn't actually indicate what that persons biggest support needs actually are.

My son was diagnosed with ASD and significant speech delay, that gives an indicator as to how he may communicate but it doesn't give any indication to his sensory challenges- which I do think should receive a separate diagnosis as sensory challenges aren't strictly within the autistic diagnostic criteria but many autistic people aren't given a separate diagnosis for these, nor his lack of risk assessment, his level of understanding, his inability to queue, or the fact he is a very loud child, probably louder than most speaking children.

I don't think there is a way to neatly split the diagnosis into categories that define need as even within significantly high needs and complex cases, presentations vary so widely.

I think in reg to dsm iv-v it depends on viewpoint. Upto that point my son's diagnosis was autism and didn't include the other presentations, saying he had an autism diagnosis was limited in presentation to people similar to him. At the moment that isn't the case at all and if I tell someone he has autism, most people wouldn't think of a person like him. So it has been overshadowed and the meaning taken away (from my view point).

I know all autistic people didn't choose this, I haven't said they did. There was much lobbying in the US for the change because some people with the other conditions, more so Aspergers felt their condition was seen as "autism lite" or mild and not given the consideration they wanted. Much of this I believe was to do with health insurance. For Asperger's in particular there was the Nazi link too which understandibly wasn't liked.

Resourses have been stretched due to growing access. I won't lie and say i'm happy about this but I do understand it.

My son did get a seperate diagnosis was sensory processing by the nhs ot. Many local kids of varying presentation have done. Our LA may not get much right but I think this is one. However, they don't follow through with therapy znd support unless you can get in section F of the ehcp then you can access inde ot or if they goto a special school that offers it as part of their provision usually inde or non maintained.

I do understand what you are saying about neatlt splitting the diagnosis. I guess i'm not after that neat split. Profound autism is on the table at the moment and i believe it will help my son and our family. I believe more broadly it will help others in broader ways such as research (if autism is lots of different things put together, grouping my start finding answers for some and targeting may get people inckuded that are quite often missed out in a sample). It could lead to more grouping and hopefully the start of some answers.

Sorry for the long reply i've tried to answer your points.

While Asperger Syndrome is what some were diagnosed with, some who are high functioning (using the original meaning of high functioning) had a diagnosis of autism. That is because Asperger Syndrome was for when IQ was above 70 and there wasn’t a language delay at 3. Those with an IQ above 70 but who had a language delay at 3 (some have a language delay or are non-verbal throughout life) received an autism diagnosis. Autism under the old criteria before the switch wasn't limited to the presentation now being described by some as having profound autism.

Some of those who were/would have been diagnosed with autism under the old criteria are profoundly disabled needing 24/7 care for life even if they don’t meet the criteria being proposed for profound autism because they do not have an IQ below 50.

I realise that but back with the old criteria there was nowhere near the same amout of people diagnosed and especially those who are more able. It wasn't a hidden disability as such which it can be now seen as now. That isnt to say that i think people getting their needs recognised is a bad thing (feel like i need to put a disclaimer on everything i write).

I've just had a shower and thought that maybe some are being deliberatley left at the cut off knowing they have high needs or that only profound is being proposed to be carved out to stop health insurance in the US from making those sort of clauses. If there is just profound autism and autism rather than multiple other boxes it'll make it harder for insurance to cut back as they did with aspergers. Just a thought.

For some reason the quote didn’t actually quote, but my post was in response to x2boys’ post who said “Well we used to it was called Aspergers”, not you. She obviously didn’t realise some can be high functioning but have had the diagnosis of autism and not Asperger Syndrome.

Ok, it was still relevant.

Except that there is no such thing as “profound autism”. As has been repeatedly pointed out on the thread, there is no scientific basis at all for such an assertion, and a large body of peer-reviewed and statistically validated data indicating that such an idea is nonsensical and completely invalid.

There are people who have profound disabilities because they have autism and another health condition as well. This does not make their autism itself more “profound”. This is pseudo-science of the worst order and it is harmful, false nonsense so to deliberately continue to pretend it has any validity and post it over and over again indicates that your motives in doing so are not genuine.

This will not benefit the children who have autism and profound disabilities, or other people who have autism, and at this point it is very obvious to everyone reading that you are deliberately stirring up discrimination against autistic people, as if there isn’t enough of that already.

I didn’t say it wasn’t, but your post came across as though you thought I was writing it in direct response to your post, so I was pointing out I was responding to x2boys.

It doesn’t exist. So I suppose it is “separated from others” in the sense that it is an imaginary concept with no scientific evidence to support it, whereas autism is a well-evidenced genetic health condition resulting in identifiable differences in brain structure that can be seen on brain scans.

Please can you explain how the genetics that cause this new condition of “profound autism” that you believe you have identified differ from the common genes identified in other autistic people?

How are the brain structure difference between neurotypical people and autistic people which have been identified in brain scans different again (allegedly) in people whom you believe should receive a separate diagnosis of a different condition called “profound autism”, demonstrating that it is a different condition to autism?

What would be the biological markers (in terms of genes and brain structure or anything else) to differentiate those with this new diagnosis that you propose of “profound autism” from the rest of the autistic population so that it could be validated as a separate condition that actually exists?

….. tumbleweed……

That’s the point of the thread.
The expression of want and discussion about whether parents with children who would qualify as profoundly autistic should have a stand alone term to describe their needs that sets them apart from the rest of the umbrella

The basis and definition for profound autism has been linked on this thread to two scientific papers.

Many of us are still waiting for your scientific papers showing deffinitively what causes autism. We'd all love to know the cause, i'm sure the nhs would too.

In regard to the genetics one of the points of the profound diagnosis is to include this group (they are missed out or under represented in mamy samples due to the difficulties their presentation makes in including them, plis it is easier for AA activists to get their point across if they scew a sample to suit their needs) in research so a cause and hopefully help can be found.

Question is, can we do this exact same (very repetitive) conversation on a loop for another 29 posts?

There is scientific basis for the diagnosis or do you not class the professors et al who came up with the definition as scientists?

https://www.theguardian.com/society/2026/feb/15/profound-autism-meaning-what-is-parents-need-to-know
I hope you find this helpful 😊

@ProjectHailMary

Out of real interest - are you a scientist? Or a neuroscientist, geneticist?