Those with severe autism need their own diagnosis

[Cubic]

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

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

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

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

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

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

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

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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.

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

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

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

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

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

Nope. That’s purely some people trying to draw arbitrary lines based on IQ etc which has nothing to do with the diagnostic criteria for autism. They are trying to redefine a medical condition, which currently has a very specific set of testable and verifiable biological markers which are common to all people who have the condition.

If I propose that there should be a new diagnosis of “profound asthma” which should include that anybody receiving this diagnosis has to have all of the normal biological markers of asthma and also have the symptoms of epilepsy (because my child happens to have asthma and epilepsy) that doesn’t in any way mean there’s any scientific validity in connecting the two and pretending that the causes of them are the same or that “profound asthma” actually exists.

All that has happened is that we’ve noted that some people who have asthma also have other health conditions that cause them other disabilities on top of their asthma. And it’s well known, of course, that many medical conditions can interact and compound the negative effects of each other. That doesn’t mean that someone with more than one condition has a more “profound” version of one of them.

Some of these posts demonstrate a mind-blowing lack understanding of basic science, or even basic logic and reasoning.

What medical, biological evidence is there that there is a separate category of “autism” where the common genes and brain structure differences that define the condition are somehow LINKED to another separate set of biological markers that are separately identifiable and have the same causes but present only in a specific subset of autistic people who are “profoundly autistic” i.e. ALL have the biological markers of autism AND some other connected biological markers as well (so it is a subset of autism but a separate identifiable and diagnosable condition on a non-arbitrary basis, as opposed to an effect of some people having autism and separate health conditions as well that together cause profound disability)?

Answer: NONE. Because no such condition exists. There is no evidence for it at all.

@ProjectHailMary we are still waiting for you to share all your sources for the scientific facts you are sharing so we can all educate ourselves, our doctors and be as clever as you

No. What they should do is push doctors not to lump off all of their children’s difficulties as part of their autism diagnosis and ensure they get diagnosis for the other medical conditions causing of the other difficulties their children suffer from which are NOT a symptom of autism itself and not caused by any of the genes or brain differences identified in autistic people.

Then their children will be able to receive the best care and support from specialists in those areas which are appropriate, push for more research into treatments for these issues and into how these separate medical conditions interact with autism to cause the profound disabilities that their children suffer as a result of the combination of these medical conditions.

They can also then stop trying to invent non-existent medical conditions or separate categories of autism, for which there is no scientific basis whatsoever, and in doing so stirring up yet more discrimination against autistic people as a whole which will not serve their own children well in the long term, as well as being quite abhorrent to do to the rest of the autistic population simply because they share only one of the medical conditions from which their children suffer, and using this as an excuse to pretend the impact of this specific medical condition on them is somehow less “severe” because their children have other, separate medical conditions as well.

There are levels of severity in asthma sufferers.

Well, that’s your opinion of what others should do.

The people themselves feel differently.

I have diagnoses for the remainder of my son’s needs, beyond his autism. Like I would assume most parents do, we’ve all already got the list.

GDD, ADHD, sensory processing, digestive issues, migraines, Tourette’s - amongst others.

Knowing that information does not make me less likely to think that his needs are profound, and that it would be helpful for that to be made clearer.

Seriously?

Just look at pubmed? E.g. scientific journals such as the Journal of Autism and Developmental Disorders, Molecular Autism, Autism Research, Biological Psychiatry, Molecular Psychiatry, Nature Communications and Nature Neuroscience, Neurology, Cerebral Cortex, etc to name a few that have published numerous studies about identified brain differences.

For studies on genetic biomarkers you could look at Molecular Autism again, or Nature Genetics, the American Journal of Human Genetics, Molecular Psychiatry (again), Autism Research (again), Journal of Neurodevelopmental Disorders, Biological Psychiatry, etc…

How lazy.

Not an opinion.

Science.

And some people in the science world are requesting a clear definition.

You really didn’t understand the post did you?

It wasn’t about whether some people have more serious asthma symptoms than others.

It was about the fact that just because some people have asthma and other health conditions that have different symptoms, that does not indicate they are connected or that there is therefore a more “profound” type of asthma that includes the symptoms of their other, separate health condition.

Try reading it again, slowly.

But there is a clear definition for those who are at the most severe end.

Please stop with the aggression.

Please stop trying to imply I’m stupid.

I have been polite. I just politely disagree you you

Which they cannot possibly have for a completely invented separate diagnosis of an invented condition that does not exist and for which no biological markers different to those of everyone else with autism have been identified.

And yet…

www.theguardian.com/society/2026/feb/15/profound-autism-meaning-what-is-parents-need-to-know

Yes seriously, you are making some very bold claims with no evidence to back up what you are saying. Help to prove your point by providing a source. Are you yourself a medical professional with capacity to diagnose?

No, there isn’t. Some people are trying to invent a separate sub-category for which no clear separate biological markers exist whatsoever and pretend that there is some link between symptoms that are caused by completely separate health conditions for which no biological or medical link to autism has been established at all, therefore have a separate “type” of autism that can be given a separate diagnosis.

It is made up pseudo-science.

I answered the poster who asked me for the sources of the neuroscientific and genetic research.

Where are your links to ANY research at all indicating any biological marker showing that profound disabilities as described on this thread are caused by autism and a subset of it that is more “profound” rather than caused by the people who suffer these profound disabilities having autism as currently defined by the existing genetics and brain structure differences AND also other, separate health conditions?

You have no evidence for this at all to support this separate diagnosis of “profound autism” because it does not exist, which is why NONE of the genetic or brain research has found any support for it at all.

There is evidence. You have been provided with it.
You refuse to engage with it. That’s your prerogative.
Just stop being so aggressive to people who don’t agree with you.

This is a discussion. Not a lecture.

My son was diagnosed with ASD and significant speech delay, that gives an indicator as to how he may communicate but it doesn't give any indication to his sensory challenges- which I do think should receive a separate diagnosis as sensory challenges aren't strictly within the autistic diagnostic criteria but many autistic people aren't given a separate diagnosis for these,

@Jimmyneutronsforehead
Sensory differences are included as part of the diagnostic criteria for autism in DSM-5 aren’t they?

What on earth are you talking about?

I literally just posted in the comment you replied to 😆a whole list of journals that have published the research I have been referring to? Many, many medical studies of peer reviewed research.

There is no evidence at all. Not a single medical, biological study identifying one single biological markers indicating some subset of autism with different pathology but shared causes that could be attributed to autism which could be called “profound autism”. None.

I have asked you to provide the evidence. You haven’t because it doesn’t exist.

I think I’m at the end of the line with my polite responses.

Good luck! X

Ok.

If there’s some medical evidence to support these claims based on the numerous studies of the biological markers of autism in terms of genetics and brain structure differences that indicates there is an identifiable separate “version” or autism that could be called “profound autism” then please provide it.

You would become extremely renowned in the scientific community for this huge discovery that mysteriously not one genetic or neuroscientific researcher has uncovered to date.

You think that an article in The Guardian constitutes medical research? Guardian journalists are not scientists.

Where is the scientific research to back up your claims? What biological markers define this separate diagnosis of “profound autism”? It’s a simple question.

If you click and open the article, there are hyperlinks to everything you’re asking about such as…
www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01541-5/abstract

Except that there is no such thing as “profound autism”…there is no scientific basis at all for such an assertion, and a large body of peer-reviewed and statistically validated data indicating that such an idea is nonsensical and completely invalid.

I mean, autism is a bunch of behaviours or traits that people decided to call autism. If it’s decided to label those behaviours plus a severe intellectual disability as ‘profound autism’ then that’s what will happen.

Not sure what you mean by ‘there’s no scientific basis at all’ for it. There isn’t, but that’s because we don’t know nearly enough about the multiple causes of autism. We’re nowhere close to that.

What statistically-validated data indicating the idea is nonsensical are you referring to please? In particular I mean, not just lists of journal names.

I think its fair to say that since the lancet article, there are other professionals /universities pushing back at the idea.

Obviously people are going to identify more with the articles or pieces from universities that agree with their view point and qoute those.

If the scientists themselves havent quite reached a consensus yet and are still going through thd test it out phase, its going to be quite challenging for a mumsnet thread to.