Page 19 | Those with severe autism need their own diagnosis

Cubic · 2026-04-12T19:37:53+00:00

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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Elbone · 13/04/2026 13:54

fracturedupont · 13/04/2026 13:51

Are you intentionally misunderstanding? We can obviously get the views of people who would once come under your definition of profoundly autistic but who have learnt to communicate in some way. That's the group you're seeking to make a decision for without asking them. Their voice is extremely important in this. And we've seen that when they try to use it they're dismissed because obviously they were never really in your category of profound autism in the first place if they can get out of it.

She was dismissed. She was told her autism wasn't severe enough because she had found a way to communicate. She's been repeatedly told she can't possibly have had childhood experiences like your child, that's despite her saying that she didn/

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But being unable to communicate is one of the criteria for being profoundly autistic.

If you can communicate effectively then you are not profoundly autistic.

fracturedupont · 13/04/2026 13:54

Locutus2000 · 13/04/2026 13:38

This is astonishingly offensive.

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Why? There clearly is something going on and I don't see how it's possibly offensive to suggest that there's a cause or that it may well be environmental.

SleeplessInWherever · 13/04/2026 13:56

fracturedupont · 13/04/2026 13:51

Are you intentionally misunderstanding? We can obviously get the views of people who would once come under your definition of profoundly autistic but who have learnt to communicate in some way. That's the group you're seeking to make a decision for without asking them. Their voice is extremely important in this. And we've seen that when they try to use it they're dismissed because obviously they were never really in your category of profound autism in the first place if they can get out of it.

She was dismissed. She was told her autism wasn't severe enough because she had found a way to communicate. She's been repeatedly told she can't possibly have had childhood experiences like your child, that's despite her saying that she didn/

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Who intentionally misunderstands things 😂

She didn’t have the same experience, because the level of cognitive awareness she described was different.

PP described having language available that she was unable to use due to communication barriers. She describes being able to do trigonometry in her head, whilst unable to physically verbally express herself.

My son cannot do trigonometry in his head. He does not have language that he is unable to use, because he doesn’t have the capacity to learn it.

I have not said that her needs aren’t impactful, that they should somehow be valued or supported less. I have said, repeatedly, that they are different.

I don’t quite know what it is to you to begin with, leaping to someone’s defence 14hrs later. I also definitely don’t understand why so many want to be categorised with people who don’t have the cognitive awareness of what day it is, nevermind do trigonometry.

fracturedupont · 13/04/2026 13:59

Elbone · 13/04/2026 13:54

But being unable to communicate is one of the criteria for being profoundly autistic.

If you can communicate effectively then you are not profoundly autistic.

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And that's my issue with the definition.

There are people who at one stage in their life are unable to communicate who then later learn to communicate. The new form of communication may look very different to that which they were tested on as a child. For example they may still not be able to orally communicate, but as they have learnt to read and write and sufficient fine motor skills to control a keyboard they may be able to type.

So if they still can't communicate 'normally' but have found another route, should they no longer be considered 'profoundly' autistic, or should they have their level of support needs downgraded. Maybe they should, maybe they shouldn't but they should be involved in this discussion. Would they ever have wanted to be considered profoundly autistic in the first place? Again ask them.

I'm not saying theirs should be the only voice, but it's a critically important one because it's the only group of people we have who would, at one point, have been eligible for this diagnosis and who can actually have a voice.

fracturedupont · 13/04/2026 13:59

You wouldn't say someone was no longer profoundly deaf because they'd learnt to read lips. I don't see this as different.

fracturedupont · 13/04/2026 14:01

Her level of cognitive awareness is not different to a profoundly autistic person without an intellectual disability. Her level of cognitive awareness is of course different to a profoundly autistic person with an intellectual disability.

But there has been resistance on this group to tie this new category to intellectual disability, which I agree with, as you can be severely and profoundly impacted by autism without having low IQ.

Owninterpreter · 13/04/2026 14:08

fracturedupont · 13/04/2026 13:59

And that's my issue with the definition.

There are people who at one stage in their life are unable to communicate who then later learn to communicate. The new form of communication may look very different to that which they were tested on as a child. For example they may still not be able to orally communicate, but as they have learnt to read and write and sufficient fine motor skills to control a keyboard they may be able to type.

So if they still can't communicate 'normally' but have found another route, should they no longer be considered 'profoundly' autistic, or should they have their level of support needs downgraded. Maybe they should, maybe they shouldn't but they should be involved in this discussion. Would they ever have wanted to be considered profoundly autistic in the first place? Again ask them.

I'm not saying theirs should be the only voice, but it's a critically important one because it's the only group of people we have who would, at one point, have been eligible for this diagnosis and who can actually have a voice.

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I dont think they would be considered profound as the group pushing for profound say not able to communicate verbally, in writing, signed or using a communication device.

I dont know what they are suggesting around receptive language as some non verbal people cant understand any instructions but others can a little bit.

fracturedupont · 13/04/2026 14:10

And (last post) why am I so bothered? (1) having discussions like this is the literal point of mumsnet, and (2) the idea of not giving autistic people a voice when there are debates over how they should be treated is pretty abhorrent to me. Why does the parent of an autistic child/adult get more of a say than autistic people themselves?

SleeplessInWherever · 13/04/2026 14:10

@fracturedupont

Maybe her voice would be better heard had she not patronised parents of communication limited children by asking if they’ve considered pointing at things.

It is because of that cognitive delay that those people are more complex and profound. Quite why we’d try and claim the impact is the same is beyond me.

fracturedupont · 13/04/2026 14:15

SleeplessInWherever · 13/04/2026 14:10

@fracturedupont

Maybe her voice would be better heard had she not patronised parents of communication limited children by asking if they’ve considered pointing at things.

It is because of that cognitive delay that those people are more complex and profound. Quite why we’d try and claim the impact is the same is beyond me.

Yeah. Her communication failed and she didn't get what she was trying to say across properly. Almost like she has a condition that impacts her ability to communicate effectively. Can't think what that could be.

I'm going to stop because I'm aware I'm talking for her myself, which is not what I want to do.

My commentary is on the fact that there are people whose views matter and here they were dismissed because they couldn't possibly fit into the relevant category. That's my problem with profound autism - it's described as separating out profoundly impacted from people who are not that impacted whereas in reality it's separating out people who are very profoundly impacted from people who are a bit less profoundly impacted and which side of it you sit is very arbitrary but likely to have a major impact on your life.

Flushitdown · 13/04/2026 14:16

fracturedupont · 13/04/2026 12:46

It is true. There's a much larger increase in the diagnosis of autistic people with low support needs, I agree, but there is a massive increase in people with high support needs as well.

A lot of the increase in diagnosis of people with low support needs can be attributed to more awareness and historical underdiagnosis in certain groups. The increase in diagnosis of people with high support needs is actually more concerning because we don't have a good reason why.

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Yes, historically these children would have been squirreled away in institutions or kept at home, out of public view.

Flushitdown · 13/04/2026 14:19

BlueCh1ck · 13/04/2026 13:02

Well clearly and it clearly varies within the “term” a lot too going by the 1 of 3 you only need to have.

It’s ridiculous as somebody with an IQ of 51 and verbal would not be defined as “profound” but somebody who had a PHD who was non verbal would.

You can’t put autistic people
in boxes and it’s pointless anyway as they all need the care they need regardless of what label they’ve been given.

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But the person with an IQ of 51 would have other diagnoses including the generic "learning disability" which is not part of the autistic diagnostic criteria.

SleeplessInWherever · 13/04/2026 14:23

fracturedupont · 13/04/2026 14:15

Yeah. Her communication failed and she didn't get what she was trying to say across properly. Almost like she has a condition that impacts her ability to communicate effectively. Can't think what that could be.

I'm going to stop because I'm aware I'm talking for her myself, which is not what I want to do.

My commentary is on the fact that there are people whose views matter and here they were dismissed because they couldn't possibly fit into the relevant category. That's my problem with profound autism - it's described as separating out profoundly impacted from people who are not that impacted whereas in reality it's separating out people who are very profoundly impacted from people who are a bit less profoundly impacted and which side of it you sit is very arbitrary but likely to have a major impact on your life.

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I actually acknowledged that in my responses.

There is however still accountability within autism. Suggesting otherwise is like saying I should allow my child to lash out at people because he has a condition that impacts his ability to not do so.

You don’t have to accept that behaviour from him, and I don’t have to accept being repeatedly patronised by someone claiming to have the level of need as my child, but also not having the cognitive impairment that goes with it, whilst also claiming its the same.

You’re welcome to dismiss my child when he’s trying to throw your belongings around, and I’m welcome to dismiss condescension from someone who actually has not shared that experience.

Flushitdown · 13/04/2026 14:23

Elbone · 13/04/2026 13:49

Why?
I think many would welcome an explanation. I know my parents are desperate for one.

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Me too.

I actually half wished the tyrannical tangerine was right about paracetamol use in pregnancy - would lots of people feel guilty? of course. would we be able to prevent it in the future? Yes very easily.

Elbone · 13/04/2026 14:26

fracturedupont · 13/04/2026 14:10

And (last post) why am I so bothered? (1) having discussions like this is the literal point of mumsnet, and (2) the idea of not giving autistic people a voice when there are debates over how they should be treated is pretty abhorrent to me. Why does the parent of an autistic child/adult get more of a say than autistic people themselves?

Because a group of autistic people are unable to advocate for themselves because they have no awareness of anything because they’re profoundly autistic!

Newnameagainn · 13/04/2026 14:30

Katey83 · 13/04/2026 13:15

My point isn't that your child doesn't face difficulties. Nor do I know whether your child would be a profound or mild case in any new classification system. My DSD has a range of difficulties and needs that are not trivial and impact her life and relationships every day, and will continue to for the rest of her life. With the right support, though, she will be able to live independently, work, have relationships and tend to her own basic needs. My friend's adult child with profound autism can not make eye contact, speak, control his behaviour to any extent where he could be without supervision, respond consistently to questions, cook or clean himself and will need to have one-on-one supervision and total care for most of the day for the rest of his life. They do not have any commonality in what they are facing or in its presentation.

My point is not that people with 'mild' autism are unaffected/without need. It is that there is no clinical/physiological/neurological/biological evidence that the condition of autism, as originally classified (what is now called profound), has any meaningful similarity to the range of conditions that are now under the autism umbrella, including whatever is causing DSD's difficulties. There are some conditions - downs, cerebral palsy, cancer - that present in different, more/less severe ways, and we know they are the 'same' umbrella condition because of a range of physiological/biological markers that allow us to say 'these are the similarities, so it's clearly the same kind of thing'. This does not exist in autism, and so I'm baffled why people who don't have profound autism want to have the same diagnostic label as people with a completely different disability with completely different needs. It's not about 'one is better one is worse.' It is that without properly understanding these very different conditions, we are not meeting any autistic person's needs.

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My understanding is that it is all under the same umbrella though, which is why someone slightly on the spectrum can go on to have a profoundly autistic disabled child. It often runs in families to different extent.

ImMissingMum · 13/04/2026 14:32

SleeplessInWherever · 12/04/2026 21:06

I do refer to my son as profoundly autistic.

In our area there are lots of resources and initiatives - very few of which cater for his level of need.

SENd sessions involve crafts, or mindfulness, or collaborative play. None of which he can access.

There’s a setting nearby specifically set up for children with autism, it’s even in their name. Last time we went he was asked to leave, as his loud stimming was disturbing the other children. A non-inclusive autism setting.

We have access to a SENd holiday club for 3hrs twice a week over the holidays. It’s an hour away, because that’s the closest can meet his need.

We sometimes joke that he’s too autistic for autism groups. But in reality, I think a lot of those environments are just set up now for children with a different presentation and profile, because I think it’s easier to provision for, doesn’t cost as much in staffing, and maybe it’s where “the money” is.

That’s not to say they don’t struggle with “their” autism, because difficulty isn’t a competition and I’m sure they do.

But there is genuinely nothing around here for children like mine who can’t sit at an arts and crafts table, won’t play in a tuff tray, and have very little independent play skills.

This basically sounds like my son too. The thought of him taking part in an arts and crafts session is laughable; he'd eat the glue and the glitter, chuck it everywhere whilst shouting and screaming. He's got no communication (no words) but can and will scream and stim and bang.

Luckily another parent in his class signposted us to a place that runs 2 hourly sessions over the holidays (just a big hall really with lots of toys, bouncy castle etc), set up by and run by parents with severely autistic and learning disabled children, as no other "official" places were suitable. It's £5 for the two hours and it's been great this Easter, really helpful for us.

Avantiagain · 13/04/2026 14:32

"We are facing a sudden tidal wave of autistic nonverbal adults with very high care needs and minimum executive functioning or understanding."

I think there is an increase in children with complex needs but they usually have have other diagnoses or reasons for the complex needs. People with 'classic autism' used to be far more hidden away either in a care home or with their parents and not going out much. These days supported living arrangements such as my son has, are more common.

Youtookthebrightmoon · 13/04/2026 14:40

Chocaholick · 13/04/2026 13:34

There are no official stats on how many 5 year olds (or whatever yardstick is chosen) are non verbal and diagnosed autistic. All I can go on is the absolute wealth of personal experience from others and my own eyes and ears. Just look at this website - barely a mention of non verbal autistic children until 2017/2018 at the earliest. An explosion of posts since then, almost daily. My youngest has attended 2 primaries and in both she has had at least 1 non verbal autistic classmate. My son is 3 and his nursery class alone has 2 children who are non verbal and have no understanding and are likely autistic (I know this as they bit DS and the staff explained that the usual talks about behaviour wouldn’t work as they wouldn’t understand it, and said they are seeking SEN funding for them).

This is also the experience of everyone around me.

I appreciate anecdata isn’t data, but it’s just so obvious and persistent that I can’t think of any other explanation for it. Every teacher and nursery worker I have spoken to reports the same thing.

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There are studies on this. This one, for example, says that the increase is in ‘milder’ forms of autism.

”The prevalence of autism with mild, borderline, or no significant adaptive challenges increased between 2000 and 2016, from 5.1 per 1000…to 17.6, while the prevalence of autism with moderate to profound challenges decreased slightly, from 1.5…to 1.2.
The prevalence increase was greater for autism without co‐occurring ID than for autism with co‐occurring ID. The increase in autism prevalence between 2000 and 2016 was confined to autism with milder phenotypes.”
https://pmc.ncbi.nlm.nih.gov/articles/PMC12853238/

I know reports will vary, that’s always the case in science, but as far as I’ve read, the consensus seems to be that most (though probably not all) of the increase is due to ‘milder’ forms being diagnosed now.

Trends Over Time in the Prevalence of Autism by Adaptive and Intellectual Functioning Levels - PMC

The autistic community is a large, growing, and heterogeneous population, and there is a need for improved methods to describe their diverse needs. Measures of adaptive functioning collected through public health surveillance may provide valuable ...

https://pmc.ncbi.nlm.nih.gov/articles/PMC12853238/

anneblythe · 13/04/2026 14:47

Chocaholick · 12/04/2026 21:30

How do you test a non verbal 5 year old in the way you would a highly articulate 50 year old professional? Can you go into more detail?

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To test a child for autism at least two different sources usually parent and school or nursery have to answer questions and give evidence regarding the child's abilities.

Soontobesingles · 13/04/2026 14:48

Leftrightmiddle · 13/04/2026 10:51

So the rest of them should be allowed to suffer in silence until they die. Ok then

Everyone should have the support they need.

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'Everyone should have the support they need.' - Really? EVERYONE? Provided by whom? The state? We simply cannot afford to subsidise everyone's needs, even everyone with needs caused by disabilities. We certainly can't afford to do that to the same extent. I am dyspraxic, with moderate to serious problems with coordination, and I can't and will never be able to drive. I struggle to jump, run, trip over a lot and find processing numbers overwhelming etc. However, my needs (for transport, support doing taxes etc) don't meet the threshold for support, because I can offset the issues caused by my disability in other ways. Does this make aspects of life very difficult at points: Yes. Do I think that is the responsibility of the state to address: No.

At a certain point, we have to say - ok, you have problems, but you need to manage these on your own or with the support of your family/community.

I am in no way suggesting that people with disabled children don't need support. God knows, a friend of mine took her life and the life of her two autistic children due to the lack of support and cut-off from her support system during COVID. She was let down, as were her lovely children. I am saying that such support cannot all come from the state. That, practically, there need to be thresholds for priority, and quite obviously, someone who can't speak, feed themselves, or tend to their own physical needs should be higher up on the list for support than someone who can attend university and cook their own meals. The same way as if I attend A&E with a broken arm I don't expect to be seen before the person having a heart attack.

crackofdoom · 13/04/2026 14:55

EmeraldShamrock000 · 12/04/2026 21:40

A lot of the assessment is done through play. Visuals traits are very obvious to a psychologist, how the child engages in play, makes eye contact, flap hands, spinning, an occupational therapy assessments on coordination and behaviours. I mean if they’re non verbal it’s usually a high marker from the off.
Not sure how a 50 year old testing works.

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At least part of the 50 year old testing looks at how you were as a child. Your parents are given a questionnaire to fill in on just this- if they're around.

Newnameagainn · 13/04/2026 15:03

Soontobesingles · 13/04/2026 14:48

'Everyone should have the support they need.' - Really? EVERYONE? Provided by whom? The state? We simply cannot afford to subsidise everyone's needs, even everyone with needs caused by disabilities. We certainly can't afford to do that to the same extent. I am dyspraxic, with moderate to serious problems with coordination, and I can't and will never be able to drive. I struggle to jump, run, trip over a lot and find processing numbers overwhelming etc. However, my needs (for transport, support doing taxes etc) don't meet the threshold for support, because I can offset the issues caused by my disability in other ways. Does this make aspects of life very difficult at points: Yes. Do I think that is the responsibility of the state to address: No.

At a certain point, we have to say - ok, you have problems, but you need to manage these on your own or with the support of your family/community.

I am in no way suggesting that people with disabled children don't need support. God knows, a friend of mine took her life and the life of her two autistic children due to the lack of support and cut-off from her support system during COVID. She was let down, as were her lovely children. I am saying that such support cannot all come from the state. That, practically, there need to be thresholds for priority, and quite obviously, someone who can't speak, feed themselves, or tend to their own physical needs should be higher up on the list for support than someone who can attend university and cook their own meals. The same way as if I attend A&E with a broken arm I don't expect to be seen before the person having a heart attack.

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A lot of my child's needs cost nothing at all to support. His IEP is more about teachers understanding him and supporting him than lots of money being spent on him.

Octavia64 · 13/04/2026 15:05

There are a LOT of studies on autism diagnoses and how it has changed over time. It is a very very active area of research, so anecdata is not needed.

this study for example used 13% of the population of the uk to look at autism diagnoses at all ages and they were all increasing (including the 0-5 range which when a child is diagnosed that early it is usually profound/Kanner type autism).

https://acamh.onlinelibrary.wiley.com/doi/10.1111/jcpp.13505

ChasingMoreSleep · 13/04/2026 15:08

Soontobesingles · 13/04/2026 14:48

'Everyone should have the support they need.' - Really? EVERYONE? Provided by whom? The state? We simply cannot afford to subsidise everyone's needs, even everyone with needs caused by disabilities. We certainly can't afford to do that to the same extent. I am dyspraxic, with moderate to serious problems with coordination, and I can't and will never be able to drive. I struggle to jump, run, trip over a lot and find processing numbers overwhelming etc. However, my needs (for transport, support doing taxes etc) don't meet the threshold for support, because I can offset the issues caused by my disability in other ways. Does this make aspects of life very difficult at points: Yes. Do I think that is the responsibility of the state to address: No.

At a certain point, we have to say - ok, you have problems, but you need to manage these on your own or with the support of your family/community.

I am in no way suggesting that people with disabled children don't need support. God knows, a friend of mine took her life and the life of her two autistic children due to the lack of support and cut-off from her support system during COVID. She was let down, as were her lovely children. I am saying that such support cannot all come from the state. That, practically, there need to be thresholds for priority, and quite obviously, someone who can't speak, feed themselves, or tend to their own physical needs should be higher up on the list for support than someone who can attend university and cook their own meals. The same way as if I attend A&E with a broken arm I don't expect to be seen before the person having a heart attack.

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Yes, everyone should receive the support they require because of their disability. That isn’t saying everyone should receive exactly the same support. Just like the person with the broken arm and the person having a heart attack should still receive the support they need, but the support they need isn’t the same and one is more time critical.

Not meeting needs in the shorter term costs more in the long run, so it is shortsighted to say we can’t because of cost.

Someone who cannot drive because of their disability is entitled to support already. For example, a disabled person railcard and, in many areas, a concessionary disabled person’s travel pass. That support may not be the same as support others receive but it is support nonetheless.