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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

She may and I recognise that she has needs. The fact that she can do any of that at all in any environment is more than what the people we are classing as severe can do or will be able to.

I think there are more variants within autism than we’re currently addressing or identifying, barely touched on by the new levels approach. I have many autistic people within my family, and there is so much nuance and difference in how it presents.

What program was this? If you could maybe tell me, I'd be interested in watching.

I just don't think autism breaks down into the neat categories you want to set out.

The fact that no one is getting enough support is caused by underfunding primarily, not diagnostic categories.

The fact that the public have misconceptions about autism is frustrating, but I'm not sure this would solve it at all. We all want people to understand how serious the struggle is, but autism is so complex and the struggles so varied that it is probably beyond anyone who doesn't have direct experience to understand anyway. I know people certainly can't imagine what my family goes through, but I don't expect that of them.

I just wish there were more services in my area.

Its mixing two things up: autism and IQ
the nominal levels of autism are autism with high iq, autism with normal iq, autism with low iq. The suggestion to make autism with low iq be a separate diagnosis of profound autism makes it seem like it’s all just autism.

we don’t need a different autism diagnosis, just to understand that iq has an impact on the autism.

It's all one big fight but breaking the diagnosis could help us.

There’s also the possibility it could hinder you. I know someone in the US whose insurance company is refusing to fund something because their DC has level 3 ASD. I am not condoning them, such attitudes are wrong, but there are similar attitudes here with things such as ‘why spend so much educating DC who aren’t going to work and pay tax’ - completely missing the point of wider considerations. Or putting people in ATUs because it is easier for the system than providing the proper support needed. On this thread we have examples of parents being fobbed off by HCPs when seeking medical care just because their DC are autistic.

Thete was one called 'I am not ok' on bbc iplayer, I'm guessing this is the one but if it isn't it is well worth a watch.

I know, I was diagnosed with autism and I definitely think that’s the right thing, but now it “presents” (I don’t know if that’s the right word really) more like what people would associate with Asperger’s. DH and says to him it looks like autism but obviously he spends way more time with me than anyone else. It’s mainly a label I use so other people (new people) understand and I don’t have to explain myself too much.

I already created a similar post. My son is now at university ( not red brick) He has 50 hours a week PA support to attend and trust me that’s needed. Intellectually he is all there. Historically he was unable to swallow for 2-3 years tube fd managed on carobel, had hypotonia, constant admissions, prolonged fits ( needing Valium), was bowel incontinent until aged 11 and now has still severe receptive language impairment and motor coordination disorder. Last week I banned him from chopping food after yet another bleed and life skills pronounced him unsafe with a microwave, he is velcroed to go out beyond 5 minutes walk to a local shop. The door is open and he can’t walk out.
He has the maturity of a 14 year old, He sent a naked picture at aged 17 because he really believed that the person wanting it was a 25 year old woman. He can’t express desires or needs well so can’t say ‘I lost the charger for my tooth brush” or ‘my shoes are too tight’ or ‘ I can’t breath due to asthma’.

There is a type of ASD where it’s not invisible and the concept of masking is simply not there. It begins I think from medium needs onwards, The people struggling then really are the carers. We are the ones describing it - my ops on could not even express anything about his ASD. His entire life / curriculum / movements are planned and plotted by others.

He is currently waiting investigations for epilepsy due to odd sleeping.

On his diagnosis it also said difficulties with ADL and I think that is the key thing.

I am so tired of caring and having to beg for time off - if I don’t take my longed for holiday by June social services will claw back the PA holiday fund ( to cover my absence) and I have to beg panel for more funding - it would be my first proper holiday without DS since he was born. I just want to be free to go away with DH without having to think who will look after him.

Sorry but to put all this in the same basket is madness. I know that I have it better than a friends whose son is markedly severe. I know we have it moderately.

This is how I see it

severe - parents / PA care for adult kids ( high care package) social services class as vulnerable
moderate parents / PA care for adult kids ( high care package) social services clsss as vulnerable
lower care needs - person cares for themselves with some parent carer support

lesser - person cares for themselves needs universal service support and sign posting

I agree. My dd has Autism and so does my son. They present totally differently. It's easier to say sometimes that he has a learning disability than mention his Autism. But even that is not true as his IQ is 115. But he has severe Autism and is under the learning disabilities team. He probably shouldn't be with his IQ but it's almost irrelevant as he can't access his IQ. His sister is super bright, super volatile. But let's not pretend she will end up in supported living because she has thumped a few adults when she was 9. You can't say severely effected by his Autism as it's offensive. It's very hard to feel he fits into the Autism community. Or his diagnosis. He was non verbal at 7 so has no voice either to argue his perspective. That's dominated by the vocal people who tend to deny being non verbal and unable to live independently sits within their diagnosis as it makes the diagnosis look bad. My son is disabled by his Autism. Another offensive truth.

Wouldn't that be discrimination and therefore open to challenge? I'm not saying that wouldn't happen because I believe it already does. Would it happen more I think is the question? I'm not sure but it is something to think about.

With the spectrum, every time a people with autism are painted with a wide brush and labeled as incapable or limited, I will speak up. I will never stop advocating against discrimination. I am successful in life, have economic power, and have the ability to navigate the neurotypical world, even if I find it exhausting. Voices like mine easily drown out the voices of people and families of those with profound needs.

Those of us who need adjustments, reasonable accommodations, and mostly just a societal shift in understanding, never should have been grouped with people with severe needs.

i have seen the benefits to my own child of intervention that I did not receive. I am not worried about those going away. The things she needs that are specific to autism are cheap and easy.

Jesus Christ. I wasn’t going to bite, but here I am.

Situational mutism isn’t just about verbal communication, it extends to non verbal too. That is what the poster you’ve just dismissed is saying.

My child with SM worked for a year on being able to nod and shake her head with one trusted person outside of the home in order to communicate. BSL isn’t going to work. Don’t be so patronising and ignorant.

It would depend on the individual circumstances as to whether it would be disability discrimination.

I agree that there needs to be some kind of differential diagnosis as it’s currently fairly unhelpful. All that said, I don’t think it’s as black and white as saying people diagnosed later on will be more able.
It’s way more complex than that and no one really understands why two autistic children can be indistinguishable at say, 5 or 8 then diverge so much as to be unrecognisably different.
it’s only when you have broad and many years of experience of meeting adults and children with autism that you actually see this. And you only tend to get that experience if you work across many types of setting, or you mix with lots of other autism families over many years. As the old saying goes, if you’ve met one person with autism, you’ve met one person with autism (Stephen Shore I believe, thanks Google)

I think, at the end of the day, we don't know enough about autism to split it any further.

As far as we can see, autistic people across the spectrum experience differing levels of the same set of symptoms and traits. Some people experience those symptoms more severely, some experience those symptoms more mildly, and some experience a mix of severe and mild symptoms. I think it's important to remember here that the former diagnostic categories were not combined for one single reason, whether that was to improve support to different groups or to disassociate from Hans Asperger's involvement with the Nazis. One of the reasons I've seen cited many times is a logical one: scientific evidence was showing increasing favour towards the concept of a single autism spectrum.

It was effectively impossible to draw an effective line between "mild" and "severe," and previous attempts weren't doing a very good job. There were many differing definitions of labels, and as such one individual could potentially be diagnosed with high functioning autism, Asperger's syndrome, atypical autism, or PDD-NOS, depending on the diagnostician. You can see how this becomes a problem; it's not the people who are "obvious" members of each category who were disadvantaged by this, it was everyone in-between. And I imagine the majority of autistic people fit into that in-between, as the neat categories left out a lot.

So, I'm not in favour of re-establishing those categories at the moment, especially not into "mild" and "severe" or any euphemism representing those labels. Instead, I think it would be far more useful to elaborate upon autism diagnoses by relevant symptoms and co-morbid conditions. Someone could be autistic and non-verbal, or autistic with learning disabilities, or autistic with ADHD, or autistic with a mood disorder, or autistic with H-EDS/HSD. All of those groups, I think, have unique challenges and require access to specific support, and I think that support would be better allocated and accessed by that elaborated diagnosis as opposed to a separate condition with little scientific evidence to back it up.

I also appreciate there is a lot of ongoing research into potential autism "types" and I would be more than happy for categorisation to change upon presentation of significant evidence! Much as Rett Syndrome is no longer considered an autism spectrum disorder as the genetic cause was discovered, I expect the same may happen to other potential subtypes; especially the autism/allergy/HSD/dysautonomia group. Until then, though, I believe it would be better for the spectrum to remain as it is and for support and services to be focused better based on symptoms and needs within that spectrum.

The issue is this stuff about ASD is not a disabiity it’s a difference.

From where I am it is a disability - someone jas to help that person literally just ge5 out of the house or to eat. Someone has to help that person with tasks to survive.

In essence there are people with ASD who can survive without support and those who would come to severe harm without any support .

Support is not an optional thing ..so for higher needs its always timetabled eg who is caring for that person now.

So my son can be left alone for a couple of hours with strict instructions don’t cook etc but any more than that and there would be issues eg someone needs to help him make dinner, Someone needs to do his laundry, Someone needs to prompt him ( really encourage him) to take his medication. Someone needs to tell him where he is going next / what he is doing, He has never planned any social life or activity or anything. He completely lives in another world it seems.

The issue is wrapped in executive function and he is tested on the 2 percentile or something like that for that.

The problem with these threads, and with this debate, OP, is that you’re pitting two disadvantaged groups against each other - autistic adults, and the parents of profoundly disabled children and adults. The support is inadequate for all, and the fact that one group’s needs are being met is not the fault of the other group.

FWIW, I don’t agree with the premise of your op, I believe that autism is a sensory and neurological processing difference that is present in both groups you refer to, and that the difference isn’t clear cut. There are differences in presentation and support needs but it isn’t as easily separated out as you believe. I don’t believe that separating out the diagnosis would improve matters for those you want to call severely autistic, I believe that it would be more likely to lead to them being dismissed as not part of the autism spectrum and beyond the scope of support - written off, if you like.

But I do try to stay away from these discussions because they become so deeply ableist and dismissive, and divisive, so quickly.

I am glad someone has had the courage to articulate this issue OP.

I do think that the use of the "spectrum" has caused a lot of confusion amongst what autism actually is, what causes it and how it effects people.

I also push back against the work "neurodiversity" as it is so broad that its meaning is value-less.

There are people who are clearly high functioning but have a sensitive nervous system which presents in any other way. There are also people who are non-verbal and unable to be left alone or function independently These people are not the same and it is unreasoble for the general public to understand the differences in a meaningful way.

I am struggling with this and Dyslexia. I have been assessed twice, once as a child ( I didn't have dyslexia) and 6 years laters (I did have a learning difficulty similar to that of dyslexia). Not the definition of dyslexia has been broadend even further I find my self very confused about whether my limitiations with reading comprehension are due to something that can be managed, or somethign that can be changed. I can't imagine how confusing it is for people with an ASD diagnosis.

I think yours is the perfect example of a spikey developmental profile from what I've read of your posts if you don't mind me saying.

It's an example of how needs can fluctuate within autism and some people develop skills they didn't previously have or develop alongside their typical age peerage. Not all autistic people will have the same spikes in their development, for some they will be less substantial or even not at all, and others will also regress although for regressers I am not saying they only became autistic later in life, as clinically the traits must be present from early development, but simply that they can lose skills they once had and that can make some seem "more autistic" later in life.

Presentations of autism can also change depending on the social scaffolding around the person with autism. In families with a high prevalence of neurodivergence it can often mean that the social scaffolding is already there and that shows a lot in early support even if there isn't early understanding. We see this a lot in primary schools where undiagnosed children scrape by but when that social scaffolding is removed at high school those children can once again seem more autistic or suddenly autistic emerging. It's one of my big gripes with the proposals for EHCP changes particularly around the high school transition where a lot of support is likely to be rescinded for children who appear to be coping fine and doing much better in their final years of primary and then will be dropped straight into the fire at high school.

That's a bit of a diversion from the OPs original point though which was should profound autism be separated from those who present with spikey profiles or persistently low support needs to which my answer would be that I don't think so, I'm not sold on the idea it will actually create more help, but I do think more support needs to be offered to every family impacted, and each autistic persons needs should be catered for on just that, a needs basis. It's not the fault of the families with profoundly autistic children that the general public lack education about the needs of complex needs children nor the families of children with spikey profiles for presenting a-typically to public perception.

Your getting more support than we are that is for sure. My child needs support but isn't getting it.

Many autistic young people that you seem less needs often don't even have an appropriate school they can attend. Where as the autistic with complex needs are getting taxis to specialist provision schools.
It's a whole different world. Most autistic with complex needs are getting an appropriate education to meet their needs. Those not seen at the complex end often receive no education at all and when they did attend mainstream the lack of support, inappropriate setting caused so much trauma that they often do not fully recover

This is a difficult topic, but it seems to me that there is a world of difference between high functioning and Aspergers and non-verbal low functioning autism - I wonder if autism is a convenient catch all label, is there evidence to show that its exactly the same disorder just presenting more severely in some people?

But what you can't measure is the cost it takes to do this.

Honestly that sounds exactly right! The main thing that made a difference for me is more money. Now I have more money I can do things on my own terms, and have the adjustments I need. Our son has autism, but we didn’t really catch on as early as we would’ve liked but that’s because he didn’t present in the same way I did as a child. As soon as he started school it became a lot more apparent.

Similar thread a few months ago pointed to this study -

https://www.princeton.edu/news/2025/07/09/major-autism-study-uncovers-biologically-distinct-subtypes-paving-way-precision

https://www.nature.com/articles/s41588-025-02224-z.pdf

They use two 4 quadrants model of autism and match the quadrants with DNA profiles. The first quadrant is Core traits without Developmental delay and without co-occuring mental health issues. And than each quadrant is core traits with the first, the second, or both.

Presented like that, it seems totally clear, that each group needs different types of support.