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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Those with severe autism need their own diagnosis

1000 replies

Cubic · 12/04/2026 20:37

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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

OP posts:
Thread gallery
13
fracturedupont · 14/04/2026 11:14

@ProjectHailMary I generally agree with your post.

I do think you're falling slightly into the same trap that some on the carer side of this have been though. There is a strong genetic element to autism and that is something that has been recognised (although not necessarily expressed in that way as opposed to blame on upbringing) from day 1. There may or may not be another condition that has similar symptoms and isn't genetic - I'm inclined to agree with you and say the issue is that it's 'profound autism' itself that is a departure from the original concept of what autism is and that it's not clear that there isn't something else here, particularly where there's no genetic link. That doesn't minimise the impact of course and I'm simply not qualified to properly assess the position or even speculate if that might be 1% of profound autism cases, or 50%.

BUT there are a lot of parents/close relatives of people with profound autism on this thread. It stands to reason some are likely autistic themselves. It is really important to read commentary in that context because I suspect part of the issue here is that meaning is being read into statements which simply isn't there. On both sides.

Elbone · 14/04/2026 11:21

ProjectHailMary · 14/04/2026 10:53

Yes. And there are specific hereditary genes associated with autism which are also highly correlated with high IQs.

There are other people with random genetic mutations that aren’t inherited that cause developmental delays etc and some crossover with autistic presentations who are often misdiagnosed with autism when what they have is a very rare genetic condition.

There are others who have the genes connected to autism so are autistic BUT also have additional learning disabilities or other conditions causing low IQs, cognitive deficiencies and limited brain functioning in parts of brain function that are not removed by autism itself e.g. total lack of self-awareness, inability to process information at all or communicate at all via any method etc (none of which are caused by autism).

These people do not have a more “severe” version or autism or “profound autism” because the genes that cause their autism are exactly the same hereditory genes (many of which are already identified) that cause autism for those without these additional conditions or cognitive impairments on top of autism. These people are more profoundly disabled because they have other conditions as well as their autism (whether diagnosed or not) which are causing them additional difficulties, and like with many health conditions when you combine two or more together they may negatively interact and make each other worse.

In summary:

  1. The parents of children who are profoundly disabled and have been diagnosed as autistic are correct that they have higher care needs than children who only have autism;

  2. some of these profoundly disabled children will be autistic, some will have been misdiagnosed and actually have very rare genetic disorders. Actual autism is hereditory;

  3. some of these profoundly disabled children are actually autistic but the thing that makes the profoundly disabled (i.e. low IQs and other presentations such as no awareness of their surroundings or self, no cognitive ability to ever learn any kind of communication method at any point in life, etc) is not the autism, but their other conditions (which may not have been diagnosed as doctors sometimes just lump this under autism when there is no evidence that the genes that cause autism cause these issues on their own, in fact it is well established that they do not);

  4. there needs to be more research into the reasons why there is the opposite of a normal distribution of IQs in autistic people (an inverted bell curve), which research to date is the result of these co-morbid conditions, and what causes them in higher prevalence in autistic people than the general population;

  5. people need to stop conflating the impact of these separate conditions such as LDs when in combination with autism with autism itself. These children are more profoundly disabled than people who only have autism but they are not “more autistic” or “more profoundly autistic”;

  6. It is disgusting to read neurotypical adults insulting and lecturing autistic adults about the impact of autism when they have never experienced it. How much someone’s autism affects them is not determined by how much it is visible or obvious to or affects those around them, including their parents. The level or care need and the “severity” of the autism are NOT the same thing. These parents - while understandably frustrated with poor services - need to stop targeting autistic adults from whom they could learn a lot about how the autism aspect of their children’s conditions is actually experienced by autistic people, which might give them some more insight into their children’s internal world which due to their children’s other conditions they cannot communicate to their parents. It’s always bizarre to see that for only this particular medical condition there are certain people who do not have it and yet feel entitled to tell other people who do have it how it affects you (note: obviously autistic posters here without LD or the other conditions which in combination with autism are causing these children to be profoundly disabled, have not been commenting on how it is to live with autism AND these other conditions that these profoundly disabled children have, but can provide much insight into what it is like to live with the effects of the autism itself, which these neurotypical parents obviously have never experienced and clearly struggle to understand in many cases given their horrendous and insulting responses to many autistic posters on the thread);

  7. clearly there needs to be clear diagnosis of the specific conditions but these attacks on autistic adults without impaired IQs or LDs are entirely counterproductive. It is good that at least some autistic people can speak up and communicate for the community as a whole. Nobody, as far as I have seen, has denied that those who have autism and other conditions and are therefore profoundly disabled in every sene should have less support; quite the opposite;

  8. this will not be solved by falsely trying to re-define autism against all scientific research on the matter an split it into false categories with arbitrary lines drawn between them. The vast majority of people recommending such an approach are not autistic, which is very illuminating as it shows that those who understand how it is to experience almost unanimously recognise that this is nonsensical and cannot ever be meaningful or workable. Similarly, there are certain very vocal “psychologists” who recommend such an approach but actual neuroscientists and geneticists who have spent a lifetime researching this almost unanimously disagree with this silly approach because there is no scientific basis for it. Genetic research and brain scans show that those who do have autism have similar brain structures and genes which are different to neurotypical people. Just because the NHS doesn’t diagnose in this way because it would be far more expensive doesn’t change the scientific fact that these presentations have the same underlying cause of the autism part of the presentation, it just indicates that those who also have low IQs and other difficulties which are NOT part of the autism diagnostic criteria or caused by the brain structures differences and genes shared by all autistic people either a) have another conditions entirely that is not autism per point 2); or b) that the additional difficulties these profoundly disabled people are suffering from are caused by them having other conditions as well as autism: these other difficulties are being wrongly attributed to their autism when the cause is their other conditions and time would be better spent identifying what those are and trying to develop treatments for them rather than denying that autistic people without these other conditions have autism;

  9. PPs are right that there’s far too little support for profoundly disabled people. There is also far too little support for those who are autistic without other co-morbid conditions (basically none at all in most cases!) and multiple studies have shown the immense damage that masking does to mental health and life expectancy on top of the trauma of living with autism, so I think it is actually extremely unpleasant for parents of profoundly disabled children to use this as an excuse to attack autistic people without additional conditions causing LDs, low IQs etc that have nothing to do with autism and try to minimise struggles with sensory issues an communication etc which they will never experience themselves. Speaking to sufferers of any other lifelong health condition in this manner and lecturing them about how “profound” or “severe” you think it is based on how well they hide their pain from you would never be accepted with any other health condition and is shameful;

  10. as evidenced on this thread, on average (debunking the myths about this) academic research has shown autistic people on average have more empathy than neurotypical people. They are also trying to speak up for your profoundly disabled children who suffer autism and other conditions, because although they do not know what your children live through with the other conditions they DO understand how it feels to be autistic and there is NO scientific reason or evidence to suggest that the autism aspect of your profoundly disabled children’s experience is any different to that of autistic people without the other disabilities are well, although it’ll clearly be processed differently due to different levels of cognitive function. Sensory issues, etc, will be experienced similarly. Rather than attacking other autistic people for not having other disabilities and trying to imply that their autism is somehow less disabling than for your children, it would be better to stand together for better services for everyone;

  11. please stop starting these extremely unpleasant and goady threads. It neither helps your children nor any other autistic person.

ETA: @BlueCh1ckwhere I have written “you” in this post it is obviously not aimed at you personally as I agree with pretty much everything you’ve written on the thread! Just wanted to avoid any misunderstanding on that. 🫣 I mean the general “you” as in the many posters on the thread who have made appalling comments about autism, many of whom you have tried to counter.

Edited

How about, you just don’t engage with OP’s thread instead of coming and trying to dictate what she’s allowed to feel about her OWN experience of having a children with profound autism?

Noras · 14/04/2026 11:27

ProjectHailMary · 14/04/2026 10:53

Yes. And there are specific hereditary genes associated with autism which are also highly correlated with high IQs.

There are other people with random genetic mutations that aren’t inherited that cause developmental delays etc and some crossover with autistic presentations who are often misdiagnosed with autism when what they have is a very rare genetic condition.

There are others who have the genes connected to autism so are autistic BUT also have additional learning disabilities or other conditions causing low IQs, cognitive deficiencies and limited brain functioning in parts of brain function that are not removed by autism itself e.g. total lack of self-awareness, inability to process information at all or communicate at all via any method etc (none of which are caused by autism).

These people do not have a more “severe” version or autism or “profound autism” because the genes that cause their autism are exactly the same hereditory genes (many of which are already identified) that cause autism for those without these additional conditions or cognitive impairments on top of autism. These people are more profoundly disabled because they have other conditions as well as their autism (whether diagnosed or not) which are causing them additional difficulties, and like with many health conditions when you combine two or more together they may negatively interact and make each other worse.

In summary:

  1. The parents of children who are profoundly disabled and have been diagnosed as autistic are correct that they have higher care needs than children who only have autism;

  2. some of these profoundly disabled children will be autistic, some will have been misdiagnosed and actually have very rare genetic disorders. Actual autism is hereditory;

  3. some of these profoundly disabled children are actually autistic but the thing that makes the profoundly disabled (i.e. low IQs and other presentations such as no awareness of their surroundings or self, no cognitive ability to ever learn any kind of communication method at any point in life, etc) is not the autism, but their other conditions (which may not have been diagnosed as doctors sometimes just lump this under autism when there is no evidence that the genes that cause autism cause these issues on their own, in fact it is well established that they do not);

  4. there needs to be more research into the reasons why there is the opposite of a normal distribution of IQs in autistic people (an inverted bell curve), which research to date is the result of these co-morbid conditions, and what causes them in higher prevalence in autistic people than the general population;

  5. people need to stop conflating the impact of these separate conditions such as LDs when in combination with autism with autism itself. These children are more profoundly disabled than people who only have autism but they are not “more autistic” or “more profoundly autistic”;

  6. It is disgusting to read neurotypical adults insulting and lecturing autistic adults about the impact of autism when they have never experienced it. How much someone’s autism affects them is not determined by how much it is visible or obvious to or affects those around them, including their parents. The level or care need and the “severity” of the autism are NOT the same thing. These parents - while understandably frustrated with poor services - need to stop targeting autistic adults from whom they could learn a lot about how the autism aspect of their children’s conditions is actually experienced by autistic people, which might give them some more insight into their children’s internal world which due to their children’s other conditions they cannot communicate to their parents. It’s always bizarre to see that for only this particular medical condition there are certain people who do not have it and yet feel entitled to tell other people who do have it how it affects you (note: obviously autistic posters here without LD or the other conditions which in combination with autism are causing these children to be profoundly disabled, have not been commenting on how it is to live with autism AND these other conditions that these profoundly disabled children have, but can provide much insight into what it is like to live with the effects of the autism itself, which these neurotypical parents obviously have never experienced and clearly struggle to understand in many cases given their horrendous and insulting responses to many autistic posters on the thread);

  7. clearly there needs to be clear diagnosis of the specific conditions but these attacks on autistic adults without impaired IQs or LDs are entirely counterproductive. It is good that at least some autistic people can speak up and communicate for the community as a whole. Nobody, as far as I have seen, has denied that those who have autism and other conditions and are therefore profoundly disabled in every sene should have less support; quite the opposite;

  8. this will not be solved by falsely trying to re-define autism against all scientific research on the matter an split it into false categories with arbitrary lines drawn between them. The vast majority of people recommending such an approach are not autistic, which is very illuminating as it shows that those who understand how it is to experience almost unanimously recognise that this is nonsensical and cannot ever be meaningful or workable. Similarly, there are certain very vocal “psychologists” who recommend such an approach but actual neuroscientists and geneticists who have spent a lifetime researching this almost unanimously disagree with this silly approach because there is no scientific basis for it. Genetic research and brain scans show that those who do have autism have similar brain structures and genes which are different to neurotypical people. Just because the NHS doesn’t diagnose in this way because it would be far more expensive doesn’t change the scientific fact that these presentations have the same underlying cause of the autism part of the presentation, it just indicates that those who also have low IQs and other difficulties which are NOT part of the autism diagnostic criteria or caused by the brain structures differences and genes shared by all autistic people either a) have another conditions entirely that is not autism per point 2); or b) that the additional difficulties these profoundly disabled people are suffering from are caused by them having other conditions as well as autism: these other difficulties are being wrongly attributed to their autism when the cause is their other conditions and time would be better spent identifying what those are and trying to develop treatments for them rather than denying that autistic people without these other conditions have autism;

  9. PPs are right that there’s far too little support for profoundly disabled people. There is also far too little support for those who are autistic without other co-morbid conditions (basically none at all in most cases!) and multiple studies have shown the immense damage that masking does to mental health and life expectancy on top of the trauma of living with autism, so I think it is actually extremely unpleasant for parents of profoundly disabled children to use this as an excuse to attack autistic people without additional conditions causing LDs, low IQs etc that have nothing to do with autism and try to minimise struggles with sensory issues an communication etc which they will never experience themselves. Speaking to sufferers of any other lifelong health condition in this manner and lecturing them about how “profound” or “severe” you think it is based on how well they hide their pain from you would never be accepted with any other health condition and is shameful;

  10. as evidenced on this thread, on average (debunking the myths about this) academic research has shown autistic people on average have more empathy than neurotypical people. They are also trying to speak up for your profoundly disabled children who suffer autism and other conditions, because although they do not know what your children live through with the other conditions they DO understand how it feels to be autistic and there is NO scientific reason or evidence to suggest that the autism aspect of your profoundly disabled children’s experience is any different to that of autistic people without the other disabilities are well, although it’ll clearly be processed differently due to different levels of cognitive function. Sensory issues, etc, will be experienced similarly. Rather than attacking other autistic people for not having other disabilities and trying to imply that their autism is somehow less disabling than for your children, it would be better to stand together for better services for everyone;

  11. please stop starting these extremely unpleasant and goady threads. It neither helps your children nor any other autistic person.

ETA: @BlueCh1ckwhere I have written “you” in this post it is obviously not aimed at you personally as I agree with pretty much everything you’ve written on the thread! Just wanted to avoid any misunderstanding on that. 🫣 I mean the general “you” as in the many posters on the thread who have made appalling comments about autism, many of whom you have tried to counter.

Edited

I think that you have missed out cause and effect.

Someone with hypotonia will have a reduced level of signalling to the brain so this will create symptoms of autism and sensory processing disorder. Imagine not knowing where you body parts are for say 10 years.

Someone with unadapted hearing impairment will have no language reaching the brain at key times and therefore no or delayed language acquisition causing ASD symptoms.

Someone could present as ASD but not even have ASD just genetic hypotonia and associated glue ear due to weakness in swallowing

We need to explore more what happens at birth / viruses etc.

I think that the symptoms might be similar not the causes are different.

Noras · 14/04/2026 11:30

I really wonder how many people with ASD kids had slightly earlier births, rushed births eg less the. an hour, reduced liquor etc etc

How many kids with ASD have epilepsy

I just believe that the NHS is letting everyone down

Also the late in life ones , did they have any minor birth issues / hearing issues etc

fracturedupont · 14/04/2026 11:33

Noras · 14/04/2026 11:30

I really wonder how many people with ASD kids had slightly earlier births, rushed births eg less the. an hour, reduced liquor etc etc

How many kids with ASD have epilepsy

I just believe that the NHS is letting everyone down

Also the late in life ones , did they have any minor birth issues / hearing issues etc

There was discussion on any issues with birth as part of the assessment process for both me and my children. I would assume it's standard.

That doesn't preclude misdiagnosis and it being some form of brain damage from birth, but that being the cause is something that should have been considered by the team assessing and discounted.

mugglewump · 14/04/2026 11:43

YABU, IMO. I would like to see the medical sources of these facts you claim because I am skeptical. The differences between people with autism are vast, but so are their needs, and it is not difficult to discern what a person's needs are. I don't think you need to have a separate term for different parts of the spectrum because they should not be defined by their diagnosis but supported by their needs. The teen who is 'highly strung' and 'struggles with friendships' may still suffer mental health issues and need specialist support whether they have an ASD diagnosis or not.

BlueSkiesAndSunshiiine · 14/04/2026 11:44

Elbone · 14/04/2026 11:21

How about, you just don’t engage with OP’s thread instead of coming and trying to dictate what she’s allowed to feel about her OWN experience of having a children with profound autism?

Why can we not discuss this topic? People rightly think it's goady and want to respond.

ProjectHailMary · 14/04/2026 11:47

fracturedupont · 14/04/2026 11:14

@ProjectHailMary I generally agree with your post.

I do think you're falling slightly into the same trap that some on the carer side of this have been though. There is a strong genetic element to autism and that is something that has been recognised (although not necessarily expressed in that way as opposed to blame on upbringing) from day 1. There may or may not be another condition that has similar symptoms and isn't genetic - I'm inclined to agree with you and say the issue is that it's 'profound autism' itself that is a departure from the original concept of what autism is and that it's not clear that there isn't something else here, particularly where there's no genetic link. That doesn't minimise the impact of course and I'm simply not qualified to properly assess the position or even speculate if that might be 1% of profound autism cases, or 50%.

BUT there are a lot of parents/close relatives of people with profound autism on this thread. It stands to reason some are likely autistic themselves. It is really important to read commentary in that context because I suspect part of the issue here is that meaning is being read into statements which simply isn't there. On both sides.

Edited

Please read my post again. You will see in points 2) and 3) that I specifically stated that in some cases people with other conditions are being diagnosed as autistic, especially those with de-novo genetic mutations which cause developmental delays etc. This is not autism, which can be identified by numerous hereditory genes and by brain scans showing specific commonalities in brain structure which differ from neurotypical people.

Also, as stated, these differences attributable to the common genes for autism are highly correlated with extremely high IQs, above the level of the general population.

At the same time, there is an identified correlation between autism and a higher prevalence of other co-morbid conditions which cause profound disability and low IQs, negating the positive affect of the autistic genes on IQ in the unfortunate people who have autism AND one of these other conditions. Hence the inverted bell-curve of IQs for autistic people with clusters at the extremes rather than in the centre, as is the case for neurotypical people.

These are all scientifically evidenced facts in multiple statistically validated academic research studies in these topics.

There is no such thing as “profound autism”. This is unscientific and there is no basis to assert that such a thing exists.

There are people who have been misdiagnosed with autism because the NHS doesn’t do proper genetic testing and brain scans due to cost so children with rare genetic mutations or syndromes are often misdiagnosed with autism when they do not share the common pathological features (the hereditory genes and resulting brain structure differences).

There are also people who DO have autism but because they ALSO have other conditions therefore have low IQs and other difficulties that have nothing to do with autism itself and are therefore profoundly disabled. They are NOT “more autistic” or “profoundly autistic”, they simply have autism AND another medical condition which causes them different difficulties which are NOT caused by the genes or brain structure differences that cause autism.

As I said, we know that there is a higher average IQ for autistic people WITHOUT other conditions than in the general population and we know why: because the same genes that have been identified for high IQ correlate highly with the genes for autism. The brain structure differences these create seem to enlarge parts of the brain that are involved in better cognitive reasoning, imagination, being able to understand complex concepts and make new connections between them. There is obviously far more to learn regarding precisely HOW and WHY these particular genes cause these changes, but it is evidenced that they do so by the data.

What is not yet understood is why there is also a higher prevalence of very low IQ and severe or profound disability in autistic people than in the general population as well. From the data available to date, it is clear that those who ONLY have autism, or autism and ADHD for example, generally fall into the above-average IQ group. Those who have other genetic conditions or sometimes environmental factors which seem to negatively interact with the autism genetics in some way end up with profound disabilities. These are not caused by their autism because there is no evidence whatsoever that the genes/ brain structures that all autistic people have cause any of these effects, rather the other conditions that these people have. Perhaps there is some negative interactions between some other types of gene and the autistic genes that in people who have BOTH causes this profound disability, which might explain the higher prevalence of these profoundly disabled people in the autistic population than in the general population. The connection as yet is unknown, and this is where research should be taking place to establish the causes of this effect of co-morbidity of autism PLUS certain other conditions resulting in profound disabilities.

The fact remains that autism itself does not cause profound disability (in the way the term has been used on this thread to describe low IQs, lack of any awareness of self or surroundings, cognitive disability to the extent of being incapable of ever learning any form of communication method - which is obviously not the same as communication difficulties and different language processing which IS associated with autism, but rather a complete lack of any ability to ever process it at all). There is no such thing as “profound autism”. There is, it seems, profound disability caused by autism PLUS other conditions.

I have not “fallen into” any “trap”. I am stating the findings of numerous studies by neuroscientists and geneticists.

I am sick of hearing all of this nonsense and people insulting each other. It won’t help anybody. Engagement with the scientific facts is the only hope if people want any way forward in terms of actually making life better for autistic people in future. As well as, of course, more understanding and social acceptance. Do the parents of profoundly disabled children really think they are doing their children favours in the long run by joining in the pile on to the autistic community by attacking adults with autism on public forums, feeding into the discrimination that exists already and making autistic people as a whole more of a target?

The way to get recognition for the needs of the profoundly disabled autistic people is not by attacking other people who also have autism and pretending that because they don’t also have the other conditions which in combination make the first person profoundly disabled their autism therefore isn’t “severe” or can be categorised as a different “level” or the impact of it can be determined by their care needs or how much it is visible to those around them. It’s unscientific nonsense and the people making these disgraceful and ignorant comments - while I understand their frustration with sub-standard services - are actually shooting themselves in the foot, attacking the wrong target, and clearly don’t understand the scientific research to date about their own children’s medical conditions.

ProjectHailMary · 14/04/2026 11:54

Noras · 14/04/2026 11:27

I think that you have missed out cause and effect.

Someone with hypotonia will have a reduced level of signalling to the brain so this will create symptoms of autism and sensory processing disorder. Imagine not knowing where you body parts are for say 10 years.

Someone with unadapted hearing impairment will have no language reaching the brain at key times and therefore no or delayed language acquisition causing ASD symptoms.

Someone could present as ASD but not even have ASD just genetic hypotonia and associated glue ear due to weakness in swallowing

We need to explore more what happens at birth / viruses etc.

I think that the symptoms might be similar not the causes are different.

Sorry, have you quoted the wrong person?

My post is clear that actual autism is hereditory. It can be identified in genes and brain scans. There is still much to learn but there are common, identifiable, testable biological markers.

The things you have mentioned may be misdiagnosed as autism just like de novo genetic mutations per point 2) in my comment to which you responded, or other conditions or environmental factors causing disability may (and probably frequently are) misdiagnosed as autism because the NHS uses behavioural mechanisms to diagnose autism rather than these biological markers.

The fact remains that autism is an identifable, hereditory genetic and brain structure condition which does NOT on its own cause low IQs, or many of the other profound disabilities which posters on the thread have described. These are either a misdiagnosis of autism OR the effect of autism PLUS another condition, whether it’s been diagnosed or not.

ProjectHailMary · 14/04/2026 11:55

Elbone · 14/04/2026 11:21

How about, you just don’t engage with OP’s thread instead of coming and trying to dictate what she’s allowed to feel about her OWN experience of having a children with profound autism?

I haven’t dictated how the OP is allowed to feel.

I have stated scientific facts which prove that the damaging false claims that the OP and numerous others on this thread have made are factually incorrect.

DailyDoseofFreshAir · 14/04/2026 11:56

whatifs1 · 13/04/2026 23:11

Honestly? I have no idea. On one hand my daughter who will need significantly more care/intervention is often in her own world so oblivious to the world around her, it’s almost a comfort that she doesn’t kick off when she goes to nursery (one whole hour) but it’s not because she’s well adjusted and wants to go in, she will just go anywhere someone leads her. There’s no actual recognition that she’s going and I’m leaving. Obviously this might change as she’s older and she may become more fearful of her surroundings.

with my DD16 I find it hard because I know at the moment she is no where near fulfilling her potential. While all her friends are shopping for prom dresses she’s sat at home dousing her hands in hand sanitizer and worrying she has germs.

she once walked 12 miles, in our home. Just pacing back and fourth. So whilst she is deemed intelligent/bright her struggles for me seem harder?

but then OTOH you have children with autism who can be come violent when not regulated, that is manageable to a point when they are small but so much harder as they get older/stronger.

honestly? It’s all pretty shit really.

Your last sentence summed it up, it's all pretty shit
Why are we arguing about the differences when all the Autistic people involved need lifetime support in some way, and all the parents are stressed and worried, and don't know what will happen when they're not around.

OP, what would a different diagnosis achieve in terms of support?
Is it just a way of saying give less money to some Autistic people ( money is also support)

Avantiagain · 14/04/2026 12:02

"Where we live camhs are rumoured to only be seeing yp who have tried to take their own lives. I say rumoured because it hasn't been confirmed by camhs directly."

One of the reasons CAMHS initially turned my son's referral down was that the severity of my son's learning disability meant that he wasn't capable of taking his own life. He might be in emotional distress and self injure for hours but it wouldn't kill him.

fracturedupont · 14/04/2026 12:03

ProjectHailMary · 14/04/2026 11:47

Please read my post again. You will see in points 2) and 3) that I specifically stated that in some cases people with other conditions are being diagnosed as autistic, especially those with de-novo genetic mutations which cause developmental delays etc. This is not autism, which can be identified by numerous hereditory genes and by brain scans showing specific commonalities in brain structure which differ from neurotypical people.

Also, as stated, these differences attributable to the common genes for autism are highly correlated with extremely high IQs, above the level of the general population.

At the same time, there is an identified correlation between autism and a higher prevalence of other co-morbid conditions which cause profound disability and low IQs, negating the positive affect of the autistic genes on IQ in the unfortunate people who have autism AND one of these other conditions. Hence the inverted bell-curve of IQs for autistic people with clusters at the extremes rather than in the centre, as is the case for neurotypical people.

These are all scientifically evidenced facts in multiple statistically validated academic research studies in these topics.

There is no such thing as “profound autism”. This is unscientific and there is no basis to assert that such a thing exists.

There are people who have been misdiagnosed with autism because the NHS doesn’t do proper genetic testing and brain scans due to cost so children with rare genetic mutations or syndromes are often misdiagnosed with autism when they do not share the common pathological features (the hereditory genes and resulting brain structure differences).

There are also people who DO have autism but because they ALSO have other conditions therefore have low IQs and other difficulties that have nothing to do with autism itself and are therefore profoundly disabled. They are NOT “more autistic” or “profoundly autistic”, they simply have autism AND another medical condition which causes them different difficulties which are NOT caused by the genes or brain structure differences that cause autism.

As I said, we know that there is a higher average IQ for autistic people WITHOUT other conditions than in the general population and we know why: because the same genes that have been identified for high IQ correlate highly with the genes for autism. The brain structure differences these create seem to enlarge parts of the brain that are involved in better cognitive reasoning, imagination, being able to understand complex concepts and make new connections between them. There is obviously far more to learn regarding precisely HOW and WHY these particular genes cause these changes, but it is evidenced that they do so by the data.

What is not yet understood is why there is also a higher prevalence of very low IQ and severe or profound disability in autistic people than in the general population as well. From the data available to date, it is clear that those who ONLY have autism, or autism and ADHD for example, generally fall into the above-average IQ group. Those who have other genetic conditions or sometimes environmental factors which seem to negatively interact with the autism genetics in some way end up with profound disabilities. These are not caused by their autism because there is no evidence whatsoever that the genes/ brain structures that all autistic people have cause any of these effects, rather the other conditions that these people have. Perhaps there is some negative interactions between some other types of gene and the autistic genes that in people who have BOTH causes this profound disability, which might explain the higher prevalence of these profoundly disabled people in the autistic population than in the general population. The connection as yet is unknown, and this is where research should be taking place to establish the causes of this effect of co-morbidity of autism PLUS certain other conditions resulting in profound disabilities.

The fact remains that autism itself does not cause profound disability (in the way the term has been used on this thread to describe low IQs, lack of any awareness of self or surroundings, cognitive disability to the extent of being incapable of ever learning any form of communication method - which is obviously not the same as communication difficulties and different language processing which IS associated with autism, but rather a complete lack of any ability to ever process it at all). There is no such thing as “profound autism”. There is, it seems, profound disability caused by autism PLUS other conditions.

I have not “fallen into” any “trap”. I am stating the findings of numerous studies by neuroscientists and geneticists.

I am sick of hearing all of this nonsense and people insulting each other. It won’t help anybody. Engagement with the scientific facts is the only hope if people want any way forward in terms of actually making life better for autistic people in future. As well as, of course, more understanding and social acceptance. Do the parents of profoundly disabled children really think they are doing their children favours in the long run by joining in the pile on to the autistic community by attacking adults with autism on public forums, feeding into the discrimination that exists already and making autistic people as a whole more of a target?

The way to get recognition for the needs of the profoundly disabled autistic people is not by attacking other people who also have autism and pretending that because they don’t also have the other conditions which in combination make the first person profoundly disabled their autism therefore isn’t “severe” or can be categorised as a different “level” or the impact of it can be determined by their care needs or how much it is visible to those around them. It’s unscientific nonsense and the people making these disgraceful and ignorant comments - while I understand their frustration with sub-standard services - are actually shooting themselves in the foot, attacking the wrong target, and clearly don’t understand the scientific research to date about their own children’s medical conditions.

I'm agreeing with you.

The trap I'm referring to is saying that these threads are goady and unpleasant. Some posters may well have those intentions, but I think several are just not getting the tone right - hard anyway online and especially hard if you're autistic. And then you have NT people reacting to something they think an autistic person is saying. And it cycles.

There is an important discussion to be had here, but I think there needs to be particular care take around reading intentions to how people post. There are definitely some posters I'd consider goady/being unpleasant, but I'm not sure that they actually intend to be. I also see people swinging backwards and forwards - there have been some really interesting discussion within the noise.

I say this as someone who was myself accused of making out I was superior to others when all I was doing was arguing and challenging a point (probably in a fairly autistic single minded way 😃).

fracturedupont · 14/04/2026 12:09

Also @ProjectHailMary - your posts are really long and seem really full of interesting points/detail. I've only skimmed for now and will return to read in full later!

I think you may be the poster I referred to earlier with the theory about three categories of autism and how the one without apparent genetic links might need separating out as there were signs it was different condition with overlapping symptoms. If so, I apologise if I incorrectly summarised your position yesterday!

ProjectHailMary · 14/04/2026 12:12

BlueSkiesAndSunshiiine · 14/04/2026 11:44

Why can we not discuss this topic? People rightly think it's goady and want to respond.

Thank you.

The OP starts a thread saying that they think there should be a separate diagnosis of “profound autism”, which there is no scientific evidence to support and an enormous amount to discredit.

Somebody (me, and others beforehand) respond to point this out, and then the response is “don’t engage with the thread”? So we should just let people spout unscientific and damaging nonsense now when they’ve specifically asked for opinions about said nonsense on a public forum?

The OP didn’t post for support with her situation and coping with it and her sadness at seeing her child suffer like this, which I feel for very much as I am sure all other on the thread do, also.

What she did was post something unscientific that increases the ongoing attempts to stir up discrimination against autistic people and my response was factual and scientific, and responded to her specific question about why inventing imaginary “levels” or “categories” or autism would be unscientific and counterproductive not to mention totally unworkable, and also made positive suggestions about a better way forward to ensure more accurate diagnosis and press for further research about the interactions between various conditions which would lead to better treatment and be a far better use of time and energy than taking out frustrations on others who also has one of the conditions that her very disabled child suffers from.

If I had asthma and epilepsy should I have a go at other asthma sufferers telling them that their condition isn’t real or their asthma is less severe than mine because they don’t also have fits and have no problem with strobe lights?

That ^^ is in effect what this entire thread is. Whether through ignorance, lack of bothering to/ being capable of understanding science, or deliberate spitefulness, I do not know, but whichever is the case it clearly is not unreasonable of me or others to have actually answered the question in the OP that the OP chose to post, particularly when so much utter nonsense has been posted that bears no relation to the facts already established in scientific research.

ProjectHailMary · 14/04/2026 12:14

fracturedupont · 14/04/2026 12:09

Also @ProjectHailMary - your posts are really long and seem really full of interesting points/detail. I've only skimmed for now and will return to read in full later!

I think you may be the poster I referred to earlier with the theory about three categories of autism and how the one without apparent genetic links might need separating out as there were signs it was different condition with overlapping symptoms. If so, I apologise if I incorrectly summarised your position yesterday!

Edited

Thanks.

No, that wasn’t me. My post today was the first time I’ve posted on the thread. I have been reading it over the last few days and thought I must speak up from a scientific point of view, given the thread topic was about diagnosis and there has been so much misinformation posted and as usual it has descended into people being very unpleasant which will help nobody.

ProjectHailMary · 14/04/2026 12:20

fracturedupont · 14/04/2026 12:03

I'm agreeing with you.

The trap I'm referring to is saying that these threads are goady and unpleasant. Some posters may well have those intentions, but I think several are just not getting the tone right - hard anyway online and especially hard if you're autistic. And then you have NT people reacting to something they think an autistic person is saying. And it cycles.

There is an important discussion to be had here, but I think there needs to be particular care take around reading intentions to how people post. There are definitely some posters I'd consider goady/being unpleasant, but I'm not sure that they actually intend to be. I also see people swinging backwards and forwards - there have been some really interesting discussion within the noise.

I say this as someone who was myself accused of making out I was superior to others when all I was doing was arguing and challenging a point (probably in a fairly autistic single minded way 😃).

Edited

I agree with all of this and my misinterpretation of your response is evidence that you are correct.

I absolutely agree - it’s important to have these discussions because so many people clearly have little understanding of these topics and it would be helpful for them to understand the actual science and therefore be able to work together on better solutions for everyone going forward. But this will only work if people are receptive to actually listening to each other and not being entrenched in their positions. I have found some of the comments on here levied at posters who - despite their autism - have tried very hard to communicate about difficult and traumatic things very difficult and unpleasant to read, and I cannot see how this will help profoundly disabled children when it seems many of their parents do not understand the established fact that it isn’t their autism alone that is causing the profound disability, there is no such thing as “profound autism”, and that they would help their children far more by pressing for diagnosis of their children’s other conditions and research into how these interact to cause the profound disability from which their children suffer.

It is depressing how everything descends into polarised attacks when so many of the accounts from both sides of the (in my opinion, pointless) argument are so harrowing. I don’t see how attacking each other and denying the scientific evidence we have already will help. What we need to do is press for more research and to support better services for all.

Noras · 14/04/2026 12:33

fracturedupont · 14/04/2026 11:33

There was discussion on any issues with birth as part of the assessment process for both me and my children. I would assume it's standard.

That doesn't preclude misdiagnosis and it being some form of brain damage from birth, but that being the cause is something that should have been considered by the team assessing and discounted.

The neurologist after the VEP showing latency offered a CT scan but I was too distraught - he said DS would have global delays luckily proved wrong

The community paediatrician adopted a diagnosed everything eg SALT OT approach and waited to see under complex neurodevelopment disorder - ASD was a late add on. But he was very high needs for mainstream school so was isolated / we were offered specialist private school but they tend to be in other places / boarding.

He has complex needs even his hearing he can’t distinguish surrounding sounds and with severe receptive impairment and low working memory it makes a bit of a mess

i still hope to install him into a little house and he gets a job with Pa support but he will need considerable support. I think it better that he works and has something positive to occupy his brain once he gets a degree. Otherwise he will be so sad.

His main identifier is ASD but as can be seen tie a complex thing at times due to complex needs

fracturedupont · 14/04/2026 12:40

The polarised attacks are depressing, but @cody (the OP) whilst not perfect (and I have not been perfect myself) had shown herself open to discussion and engaging on posts. It's just people keep sending the thread off track again eg coming on after 20 pages saying 'autism's over diagnosed', refusing point blank to engage with any discussion about the impacts of people with significant support needs who don't meet the proposed 'profound' autism definition, or continually trying to pull this back to being connected to an expanded definition of autism to include Asperger's when the group that are really negatively impacted are the ones with classic Kanner's autism (I'm now reading his original article and it's fascinating!). It's very hard not to get drawn into that.

I don't want the thread to be derailed by this because I really value the discussion and I am not clear there's an alternative forum where it would be better had.

[I didn't mean you posted on this thread before, I meant I paraphrased something I remembered someone else saying on another thread and thought I might have been paraphrasing you]

whatifs1 · 14/04/2026 12:43

@Cubicyou didn’t upset or insult me, it’s fine! I am sure I may find as my DD3 grows up that I will then find her harder to manage over DD16.

for those saying CAMHS has declined, they did decline DD 2/3 times previously but I think the school absence coupled with the fact we had FSW involved may have changed their mind? The support workers were fantastic and really it really did feel like they were in our corner!

DD3 has her comm paeds appt at the end of this month after waiting for a YEAR.

a big issue is the long waits to access services. Children’s development happens quickly and a year is a long time for a child.

you cannot preach early intervention and then have people waiting years for the support.

something needs to change!

fracturedupont · 14/04/2026 12:46

I meant @Cubic not @cody

ProjectHailMary · 14/04/2026 12:48

Avantiagain · 14/04/2026 12:02

"Where we live camhs are rumoured to only be seeing yp who have tried to take their own lives. I say rumoured because it hasn't been confirmed by camhs directly."

One of the reasons CAMHS initially turned my son's referral down was that the severity of my son's learning disability meant that he wasn't capable of taking his own life. He might be in emotional distress and self injure for hours but it wouldn't kill him.

Where we live it is worse.

Trying to take your own life isn’t sufficient, if CAMHS deem the attempt not to be “genuine” and just a “cry for help”.

Unless they are convinced that the CYP took action so extreme that they were almost certain to die so it cannot be deemed a “cry for help” rather than a “genuine suicide attempt” then they won’t see them.

Oh, and if they’re autistic they won’t see them at all, regardless. Because apparently they “don’t have any specialists who can do this”. So suicidal autistic teenagers should just be left to get on with it, despite research showing that their risk of suicide is 20 time higher than that of a neurotypical teenager (which is obviously bad enough). Apparently the Equality Act 2010 doesn’t exist.

I’m sure if the parent of one of these teenagers took CAMHS to court they would win, but they are likely too busy trying to keep their teens alive or dealing with their grief that they aren’t alive anymore, so this state-mandated discrimination is allowed to continue.

This is why the parents of autistic children and autistic adults need to work together, not fight each other.

ProjectHailMary · 14/04/2026 13:09

fracturedupont · 14/04/2026 12:40

The polarised attacks are depressing, but @cody (the OP) whilst not perfect (and I have not been perfect myself) had shown herself open to discussion and engaging on posts. It's just people keep sending the thread off track again eg coming on after 20 pages saying 'autism's over diagnosed', refusing point blank to engage with any discussion about the impacts of people with significant support needs who don't meet the proposed 'profound' autism definition, or continually trying to pull this back to being connected to an expanded definition of autism to include Asperger's when the group that are really negatively impacted are the ones with classic Kanner's autism (I'm now reading his original article and it's fascinating!). It's very hard not to get drawn into that.

I don't want the thread to be derailed by this because I really value the discussion and I am not clear there's an alternative forum where it would be better had.

[I didn't mean you posted on this thread before, I meant I paraphrased something I remembered someone else saying on another thread and thought I might have been paraphrasing you]

The point is that there is no such thing as “profound autism”. Creating such a false diagnosis against all scientific evidence would not benefit the OP’s child or any other autistic children/ adults.

Understanding exactly WHY children like the OP’s child have profound disabilities which will either be because of something else misdiagnosed as autism OR autism PLUS another condition — and in the latter case more research into WHY that occurs and possible treatments — will help her child and others like them far more than attacking other adults who have ONE of the medical conditions her child has (which is not the main cause of their problems) and pretending that their disability from autism itself is therefore less severe: Her child is more profoundly disabled, but not more profoundly autistic because no such thing exists, it is not possible.

Attacking other autistic people in this way will not get her or her child more help, it will not bring more understanding from society to her child, and it will not help her child or others with similar combinations of conditions resulting in profound disability to get better support or treatments in future.

Spreading scientifically disproved nonsense on the internet won’t help the OP or her child. It will, however, likely add to the increase level of attacks and discrimination that autistic people experience and further entrench misunderstanding in the general public and therefore provide more support for cutting services/ support further for all autistic people.

I suggest you don’t read articles from decades ago but read up to date academic research in journals on neuroscience and genetics. The fact is that there is no scientific basis for arbitrarily trying to separate autistic people into “categories” artificially. Autism does NOT, on its own, cause the types of profound disability that the OP has decribed and many autistic people therefore, obviously, not having low IQ and these types of profound disability does not have any bearing on the “severity” of their autism. Autism is being blamed for a lot of things here which have nothing to do with it and it’s quite depressing that many parents of autistic children seem to have so little understanding of what autism is, yet apparently feel they can lecture others on the topic.

I understand their frustration and I feel for their pain seeing their children suffer in such an appalling manner. The fact remains that it’s clear it isn’t autism that’s causing their children’s profound disabilities. It may be part of the cause due to its interactions with other conditions their children have, but on its own autism does not cause this. Nothing in the biological markers identified for autism correlates to this, to date: quite the opposite in terms of cognitive ability in the absence of other conditions, so there is another condition/ an interaction of conditions behind the fact that some autistic children suffer these profound disabilities. Their parents should be pushing their children’s doctors to diagnose these conditions and create the data to enable research into WHY in combination they cause these profound disabilities so that treatments can be improved.

I don’t see how these threads (which come up with astonishing regularity given these topics have been done to death) are helping anyone. People could at least inform themselves of the basic scientific facts evidenced to date before spouting this damaging nonsense which causes immense harm to a lot of autistic adults who read this stuff as well as, ironically, increasing the prejudice against children such as the OP’s child.

If the OP just wanted support or to set out her struggles then people would have been very receptive. What is not ok is spouting pseudo-scientific nonsense encouraging further discrimination against autistic people, which will unfortunately make life harder in the long run for children like her child as well. It’s not a zero-sum game.

Polishmamaa · 14/04/2026 13:13

Itchthescratch · 14/04/2026 09:54

I think this is unfair and completely ignores the reality of our situation as a country.

We are now in a situation where we have almost unlimited demand for support and resources from a rapidly expanding group of people. We also have very limited funding available to meet these needs. We have an enormous national debt and crippling interest repayments already. There is very little point in hand wringing and complaining that everyone isn't getting their needs met. It's obvious that this is the case and will continue to be the case unless we find a magic money tree somewhere. So what viable approaches do we have:

  1. You spread the funding we do have available thinly but amongst all those with additional needs.
  1. You concentrate funds on those with the most severe needs and raise the threshold for support.

Someone advocating the second option isn't despicable. There are clearly winners and losers in both approaches. What is despicable is trying to shut down debate and accepting only those that suggest that everyone's needs should be met and anything less than that is morally reprehensible. This is completely unrealistic and just support us drifting into a position where we don't have a clear and viable plan but muddle on pretending we can do something we obviously can't.

This

ProjectHailMary · 14/04/2026 13:17

Polishmamaa · 14/04/2026 13:13

This

Great way to announce to everyone that you don’t have the slightest comprehension of the basics of economics!

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