ASD…. Should there be another name for a more ‘severe’ version.

[iminvestednow]

Please forgive me as I’m new to this, I have a son with Autism. This is his only diagnosis. He is a beautiful, kind and wonderful son.

DS struggles greatly, although we have made fantastic progress in so many areas he will still never lead a ‘normal life’. He has no concept of friends, money or any social convention, he will need help to get by forever, he is extremely vulnerable.

I’ve noticed recently (great that people are more accepting) a lot of people saying, I’ve been recently diagnosed with autism aged 40 and it’s helped me so much. I think it’s great that people are getting support but does it dilute what severe autism is? Most of these people are competent fully functioning members of society and will never need the kind of help my son does. Should there another term to differentiate?

In principle I agree perhaps there should be a subtype of autism to indicate those affected in the daily self-care and continence area.

I don’t like the levels 1,2,3 posted upthread because in reading them, level 1 is a good day for my now adult DC with ASD and level 3 is a bad day. They cycle through the descriptions for those levels tbh, and often the support has to adjust with them. I’d actually add a level 4 to that list for when they have a full on meltdown that then leads to mental breakdown with suicidal impulses. But I recognise that’s really a help sheet for a very young chid, not a teen or adult.

I also agree that many getting the diagnosis later in life are not coping. There’s a lot of research on this how long term, those with ASD can develop serious mental illnesses due to the stresses of masking- which is a deceptive term really, because it’s not as easy as putting on and taking off a mask. It takes a ton of internal stress, second-guessing, and energy to attempt.

The reason why Aspergers is a term that can no longer be used and should stay on the scrap heap of history is because of its origin. Dr Asperger was the Nazi doctor that decided which children with autism lived or died. If you had the type of desirable autism which was the highly intelligent and could be useful to the Reich, you lived and were called “Aspberger’s” as in one of his. If you were not one of Asperger’s children, you were one of the “eaters”- the Nazi term for all disabled who could not “contribute” to the Reich. I won’t go into how the Nazis murdered these children unlucky enough not to pass Asperger’s tests as it is very distressing and I’ve see archive footage of a mass “demonstration” is what they called it..not “child murder” but “demonstration of the medical procedure of euthanasia”. Absolutely horrific and the images are burned into my mind for life.

So, no, I don’t care how useful a term it is, even the fact it is useful is just an echo of the Nazis calling Aspergers the “useful” autistics….it should never come back into use in my opinion.

I am sorry that you are dealing with such a lot, but I voted YABU because there's a very complex question being massively oversimplified here.

firstly, although ASD may be the only diagnosis your DS has so far, that doesn't mean that's the only thing he has going on. some people with Autism also have a number of specific learning difficulties which are concurrent with their autism but not the same thing as having autism, and some people do not have such additional difficulties. that does not mean their autism is more or less severe, they are different phenomena.

Secondly - there used to be different diagnoses along the lines you are asking for but this differentiation was scrapped for very good reasons. the difference you are perceiving is more to so with the extent to which "the rest of the world" has to adjust for someone, rather than the extent to which the condition actually affects the diagnosed person.

Trying to think of an analogy by comparison to a different disability (although I know that many people living with ASD prefer not think of it as a disability so I have chosen to compare with a physical difference where there are similar feelings that the condition should be considered a difference rather than a disability) if you compare two people who have total an profound lack of hearing, and one of them is someone who has learned sign language and lip reading and can read and write text and so with some reasonable adjustments they can fully function in society, have a job etc., whereas another person with the same degree of hearing issues may also have missing limbs and/or a learning disability and/or also may be blind that means that they simply can't function in the same way. In this analogy it would obviously be ridiculous to claim that one person was "less deaf" than the other and the same is true for people with ASD.

ASD isn't fully understood but as a spectrum disorder there are numerous axes of magnitude of different effects that people can experience. each person has a different profile on this spectrum but some shapes of profile give rise to a situation where a person is able to "simulate nornality" some of the time if needed. That doesn't mean that their autism is "mild". some of the axes on which autism is assessed are things that are more "obvious" than others, but that doesn't mean people who are assessed with a bigger outcome on that axis are "more' on the spectrum than someone whose profile on the spectrum is more weighted towards other axes.

@SafariRushHour Could you explain the visual a bit more please? Does it mean that all three areas have to be impaired to meet the criteria? I have to admit that I have always found the sheer range of behaviours/qualities that all fall under autism really confusing, so many people have some of the qualities and yet it does feel very different to e.g. a non-verbal person. Then you have things like PDA, where the person can present as sociable when needed, which seems different again as it’s a chosen behaviour/presentation. It does end up making you want to reflect more on the society that imposes these labels and what they are for.

There absolutely should be a separate terminology, i agree.

I agree it's a huge range, and I've always struggled a bit to understand why learning disability isn't used as well for some young people when diagnosed but that's just my layman's thinking.
I don't like the levels, it's definitely a spectrum - I've never seen them used 'officially'.

My son was diagnosed with autism at 2 (no other diagnosis, although learning disabilities and epilepsy were added at some stage). Once he got older I didn’t really bother with the autism stuff (although he is very autistic 😁). His services all come from learning disability services. They are very experienced with autism as well so you don’t really need to think of it separately. It was the same at his special school - his diagnosis didn’t really matter. He was in the autism classroom but that was quite loose - it wasn’t for people with a certain diagnosis - depended on the presentation (& wasn’t called the autism classroom - it just was iykwim).

When I train his team now I make sure they are taught about autism, - because it is such a big part of why he does what he does & they need to understand something about it - but most autism services or events would be completely inaccessible to him.

Autism is many things but definitely there has been a shift over the last twenty years in the group autism specific services are aimed at. Now they tend to be very much aimed at the group that would have been called Asperger’s when my son was growing up. I think it matters more when younger & trying to find your crowd. Once older you just want to be able to access decent services and support to live as independent life as possible - for that the key is being able to access learning disability services.

There is a growing number of people (including professionals) who think there needs to be more differentiation. There is meant to be with the levels etc but I think there is a consensus that that doesn’t really work. In my son’s case he should (covid has delayed this) have a good chance of a genetic diagnosis. That (if it ever happens) will probably be the most useful diagnosis of all because it will help us identify other families with kids and adults very like him

@Onnabugeisha I had no idea. I wondered why the term Aspergers was no longer used.

After reading your post I found an article about it on www.biomedcentral.com/about/press-centre/science-press-releases/19-04-18

Absolutely horrific. I agree with you that removing his name and no longer using it was the right decision.

It blows my mind that we were using his name to diagnose children only 20 years ago.

Ultimately what this conversation always ends up at is that people want a separate category for people who have ASD and comorbid learning disability, because their learning disability is so severe.

But we don't do this for other conditions - epilepsy, Down Syndrome, asthma, bipolar etc. despite each of these conditions likely affecting someone with a learning disability differently and (potentially) more severely than someone without.

I just re read my post. Only 20 years ago is meant to be 10 years ago. Sorry for typo.

"Then you have things like PDA, where the person can present as sociable when needed, which seems different again as it’s a chosen behaviour/presentation."

There is no choice about PDA. None whatsoever. That's kind of the point. Its autism, not a chosen behaviour.

If you're slightly socially awkward, you're unlikely to be diagnosed with ASD.

I have ASD. I have difficulties that go far beyond slightly socially awkward, even though that is my presentation and I hold down a professional job.

My son got an Asperger's diagnosis in 2018! So it's quite recent.

My son is 23 & was diagnosed with Autism at 3 years old. I have never seen those levels 1,2,3 before. Is this something new?

Sorry you are struggling OP but I think the terminology is fine. It's a spectrum which covers all bases.

There does need to be better terminology. Within our family I'm one of several with various autism diagnoses. Mine is Asperger's and, leaving the actions of Asperger to one side, it's useful to have a clearer term to describe the way the triad affects me compared to the way it affects my cousin who received a Kanners with learning difficulties diagnosis. DC has an ASD diagnosis which has been hard to navigate because you're constantly having to explain the triad effects, especially as there are comorbidities, in order to get support.

The narrative around superpowers, gifts and celebrating autism is appaling and should be consigned to the bin. Likewise functioning, which appears to be shorthand for 'masks so well that it's hard to tell'. It's all part of an ableist society which only appears to appreciate those who 'make enough effort' and don't disturb/disgust 'normal' folk too badly.

Clear categories to help when accessing help or explaining to settings would be great. There won't be perfect matches, it isn't possible as the triad interactions are as variable as the individuals, but some sort of broad explanation like the levels mentioned earlier would be a good start.

It’s way too complex a condition to try to push people into smaller boxes. That would just end up with even more stereotypes and pre judgment on what people should be able to do because of the box they are in.

It’s difficult. I do agree, but at the same time I’m not sure it would be possible. My 8yo has a diagnosis of Asperger’s received 3 years ago (it was still possible at least at that point as it depends which diagnostic manual is used, he was diagnosed under the ICD-10 and not the DSM).

I rarely use the word Asperger’s because of the reasons outlined above, but it’s is a useful distinction sometimes, especially when dealing with professionals/educators where it has some meaning.

The levels example above looks helpful at first glance. But for example, my child spends much of his time comfortably in level 1, especially at school and in other predictable scenarios. He is an expert masker, and whilst he might seem quirky at times for the most part he ‘passes’ as neurotypical. However, there are times when he will often have more level 2 type behaviours, especially at home when he doesn’t need to mask, and sometimes in meltdown will exhibit full level 3 behaviour.

He has no issues with his intellectual/academic ability apart from that he is completely incapable of reading/completing a novel. He just is not interested in the characters or story, I find it quite bizarre. He has significant anxiety issues, and expends quite a lot of effort worrying about things other people wouldn’t bother with, like how many dogs we might encounter on our walk to school.

My son has autism and a severe learning disability. The two conditions interact so it is impossible to separate them out in those that have both. As he has got older I have found learning disability services more useful than those aimed at those with autism.

You said really clearly in one paragraph what I tried to say in about ten 😂

100% agree. I sometimes get told that my son’s autism is somehow separate from his learning disability - which is utter nonsense. It’s all part of whatever is going on with him. It’s partly why I think a genetic diagnosis will be useful. It would tie it all together into something meaningful.

I'm autistic. I agree with you.

Some people can't read write or communicate. But where would the cut off end?

Some people drive, work, shop and socialise. I can't do that.

However I have 2 kids (only got diagnosed at 32) and I can talk, wash, use the toilet, read and write.

I live alone but my mum helps me loads with appointments, medication, money, bills etc.

YANBU. When my 2 sons were diagnosed early 2000s (Asperger’s and PDD-NOS), I thought by now, 20 years later, we’d have much more of a breakdown of ASD and all the various levels, with clear names and descriptions of many of the various ways autism presents.

Those who have any experience with kids on the spectrum know that it’s important to be able to name and describe where the child falls on the spectrum, for therapies, school placement, adjustments, but instead it seems we’re rolling up into a one size fits all. Many parents of ASD kids have commented on this to me.

I rarely had to use the descriptors of my sons ASD, but when I needed the terms, they were useful for teachers, therapists to be able to know approximately from where to start. The terminology used to describe my boys wasn’t perfect, and I always thought there would be improvements in the way people with ASD were described.

I remember when I first heard the saying about ASD “if you’ve seen one person with ASD, you’ve seen one person with ASD”, which describes how unique each individual with ASD is.

I was quite shocked a few years ago when admittedly I didn’t know much about Autism. I was waiting with my kids in the hairdresser and a late teen was in with with his mum having his hair cut. He was clearly non verbal and had other noticeable disability. When they left the hairdresser told me he was a regular and had Autism. I suppose I had a different idea of what Autism was but obviously it is a spectrum and it should be recognised that for some it is very severe.

I completely agree. There has been a push for the dsm to be updated to include "profound" autism when it is next revised. The Lancet issued a report regarding it.

www.psychologytoday.com/gb/blog/inspectrum/202112/lancet-commission-calls-new-category-profound-autism

I read an article recently which discussed the issues around use of language to describe autism and how it restricts discussion and advancements. Linked (hopefully) below.

onlinelibrary.wiley.com/doi/full/10.1002/aur.2876

My feelings are that now the diagnosis is so broad that it is essentially meaningless. I think the fact that the verbal, articulate and able people with autism who advocate that autism is a difference not a disability etc harm those with severe needs. Ultimately autism is a disability not an identity.

I've had this debate many times on mumsnet and usually someone will post that those with more severe needs have a learning disability (even if not diagnosed) which is comorbid buy that the anxiety/ stress/ mental health issues they have aren't comorbid?!

There seems to be a type of autism which is ok to have and the more severe type is an embarrassment or hindrance because it goes against the different not disabled mantra.

I think that those less impacted will be hit by a massive lack of funding for services if the diagnosis is separated out again and they'll also suffer less understanding snd/or higher expectations. I think this is why they are reluctant to advocate for it.

People with severe autism do need more protections, adjustments and support and they should be protected for them. Their carers should be able to say their diagnosis znd it be understood what that means. At the moment it could mean a 60 year old who has been a fully functioning member of society with a family and looking forward to a pension or a 25 year old non verbal requiring 24 hour care.

Also my mum says. I have autism a bit or it's only Asperger's.

She says I can't blame things on having it.

My diagnosis is Autism.

It just isn't as clear cut as 'Level 1,2,3'.

DD2 was 11 when diagnosed. She's verbal, average intelligence, etc. Now in a specialist school with 3 pupils in her class, a TA and a teacher. 1:1 support on school trips. Won't go out socially. Expressive language disorder now diagnosed.

DD1 was diagnosed at 15. Moderate learning disabilities (which translates to severe learning difficulties) so special school since age 4. Now, age 17, in specialist college in a class of 9 with 5 staff. Needs significant 1:1 support, needs to be washed, etc.

Neither of them could be described in terms of levels.

I'm not sure I agree OP. My dd has recently been diagnosed following a period of extremely poor mental health (she attempted suicide). The transition to secondary school and all the social stuff associated with that pushed her over the edge - she had been extremely high achieving at primary school and gave every indication that she was thriving. She has masked her difficulties, it was all kept inside - she was absolutely filled with the most horrific anxiety whilst presenting a NT front to the world.