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?

Do any of the NT people here have an IQ below 70? I guess they can't be real NTs then.

Or: read the thread.

Nobody posting here has claimed to be "low functioning"
I think that’s exactly what I said. Nobody describes themselves as LFA but plenty argue that they wouldn’t describe themselves as HFA.

I think IQ does have a massive impact on outcomes so is pertinent but the thread is particularly focused on autism and it’s various presentations.

Nobody is suggesting anyone isn’t “real”. You can be a very real autistic with an extremely high IQ and a very real non autistic with an extremely low IQ. It’s entirely possible the non autistic would be more disabled…but I fail to see what you are trying to get at beyond “describing autistics as anything other than a single diagnosis is wrong”

Anybody with an IQ below 70 has a significant learning disability, by definition. What is your point? NT or ND people with a significant learning disability will not be able to engage in these discussions in the way that both NTs and NDs without a such a learning disability have done.

Exactly my point.

Except your last sentence. Which is the opposite of everything I've said. 🤦🏻‍♀️

Personally I think the merging of Asperger’s and HFA and LFA has been detrimental to those diagnosed with the condition/s. I think it makes understanding what helps, finding support and research harder. I rarely hear people who were once described as H/LFA speak positively about the new ASD diagnosis but often hear aspergics or self diagnosed adults pushing to keep the single descriptor. I would guess that’s be because it isn’t detrimental to them.

There used to be terms that were considered acceptable to describe people on the spectrum like myself and my dd whose lives are basically able to conform to the accepted model of a successful NT life. Now I try to say things like an “absent minded professor type” and “quirky” to get people to understand. It is imprecise and inefficient, which as a person on the spectrum, I find especially galling. Many of us prefer very precise terminology and value choosing the perfect word for each situation.

people who suffer from autism in profound, negative ways should not have to give up the term. Those of us who function relatively normally and even view autism as a net asset should be the ones using subgroup terms.

I just wish we were still allowed to use them officially. I also wish we could use them unofficially without causing such offense.

Horrendous mental health struggles can impact hugely on life and how low a person functions. To dictate that only those people with autism who have severe learning difficulties get to keep the title is wrong. And no I am not a self diagnosed adult and I don’t have a child with Asperges. I have a child with ASC who has chronic mental health issues involving endless hospital stays and other SEN diagnoses to go with it. She is verbal and has GCSEs. She has an autism diagnosis, it is considered severe and her life is impacted enough to have full PIP.

I agree.

Huh? I thought this thread was about diagnoses? NT people get diagnoses all of the time. Some diagnoses come with different levels or different variations. The reason for that isn't to 'suit NT people' it's to help find the correct pathways for treatment, support etc. ND people can also be medical personnel, they can also work in care, they can also offer support, they can also diagnose people, they can also need to see someone diagnosis in order to treat them.

I have felt this for a while, but any ASD grading system could lead to all sorts of shenanigans, with parents losing out on support, the more effective maskers being mis-graded…
I suppose the system we have now is ok in that other features (like an EHCP) determine the level of need and the ASD is just one part of a jigsaw that helps determine how vulnerable a child is.
I know exactly what you mean, though. I have an ASD DS and he will struggle to live independently… but he could. In his school are other ASD students whose future lives will need monitoring to secure their safety from, for example, all the CFs out there who would seek to exploit them or just hurt them.
It’s interesting to think about where they all end up.

But with deafness, (I've got a diagnosis of mild deafness) those of us classed as mild do generally live a normal life. I don't, unlike my friend's son who is classed as moderate to severely deaf, need hearing aids. My only issues really being that I can't hear you if there's too much noise and you have to speak up.

But with Autism, I'm lumped in with friends of mine who work full time and have children. Unlike them, I need care too.

Its because people think the functioning relates to the autism not the IQ.

But NT people dont declare they are high functioning NT to differentiate themselves from NT people with learning disabilities so I dont think autistic people should have to declare their IQ is over 70 all the time either.

I think this is why some people want a word that describes the impact of the autism as the autism itself can cause someone to be profoundly affected in every single deficit, all of the time in any environment, at all ages I still believe this poses some difficulties with borderline people and what age you diagnose someone but to be fair there are difficulties with the current system too.

I am glad that the term profound autism is being used more and more by proffesionals and will likely be included in the dsm.

I think it will cause one of the original issues with the split to resurface and that these arguments will happen again with more people wanting to be included in that dx for validation of their disability and access to support, funding and services.

I also wonder if part of the issue with discussions like these is due to some of the participants having a dx themselves (autism being a social communication disability).

I also wonder if part of the issue with discussions like these is due to some of the participants having a dx themselves (autism being a social communication disability).

Can you elaborate, please?

It is incredibly difficult to access the iq of some people who are profoundly impacted. Iq tests aren't set up for people with autism. Some would definitely be put in the lfa category but their cog profile may be spikey with relative strengths in some areas and not scoring or first percentile in others. The difference would mean that the iq score would be invalid and not appropriate.

Obviously there are people with autism who do have ld but how much is ld and how much is their autism is hard to pick apart. Likewise with mental health but with the difference that some mh can be clearly diagnosed in addition to autism.

I wonder if many people with what would be hfa prefer to say they are impacted more by their autism that their mh needs because of the stigma attached to mh. I do know of parents who have children that do this because autism us more "acceptable" to struggle with thzn mental health.

For some theory of mind difficulties is a big part of their presentation.

Autism by definition is a social communication condition/ disorder (whatever term is acceptable to the reader). In order to be diagnosed the person would have deficits in their social communication skills/ understanding. This is a social media platform and the discussion involves theory of mind and communication. Some (not all) posters who have a dx will be impacted.

I have two autistic children. One who will likely never be independent or safe socially. One who can definitely function with much less support. It's apples and oranges despite the same diagnosis.

I think it used to be accepted that like other conditions there were lots of levels to autism and it was just treated accordingly.
I think the problem is "activists" and autism has become a bit of a hot potato on social media and in life. One of mine has been on the diagnosis path for ages, they will be fine though. But in the way of these things I have quite a few relatives who also have autism. One to a degree that they are completely reliant on full time care. The abuse his Mum has got online for admitting that her life and her child's life is very hard, his autism is absolutely not a "superpower". The abuse is often from parents of children with autism or people who themselves have autism. Even how you refer to a child with autism can result in abuse (ie autistic or person with autism).

There just needs to be more tolerance and more support.

I've also never seen the levels chart (upthread) before, the spelling is American, is it actually a UK thing?

My teenage DS and nephew both have dx of ASD. My DS attends academic private school, has many interests, hobbies and friends. He takes fewer subjects than his peers and has some learning support. My nephew is the same age and cannot read or speak well. He has never had a friend nor will he ever be able to live unsupported. I feel it is insulting to my sister and her family that both children have the same dx with no differentiation. Of course under the old parlance my DS would have Asperger’s.

<Sigh>

Yes. I know. But it's clear what I mean (Isn't it?) there's a difference between autism as a disability and intellectual disability, even if somebody has both.

Just like it's different to be blind and be a wheelchair user. They are both disabilites. And some people are both. But nobody would argue that one is worse or better, we just recognise that they are different. A blind person might need a hand rail and textured floor to indicate steps, as well as braille signs or somebody to read a sign, whereas a wheelchair user might be able to read a printed sign, but a hand rail is no use as they need ramps.

How else would you like me to describe what I am trying to say?

Everything has levels of severity in how it impacts people’s lives. Autism, intelligence, epilepsy, hearing loss, cerebral palsy, height, weight, cancer, asthma. Silly to say everyone is affected to the same degree by something.

I think the issue @relamped is that someone like my son isn’t autistic separately from his learning disability. It is part of the same condition. Along with the language disorder and the epilepsy. He had an autism diagnosis many, many years before the LD diagnosis and the epilepsy diagnosis. Autism doesn’t sit separate from his other challenges.

In his case I suspect we’ll end up with a genetic diagnosis (plan to chase what is happening with that after Christmas). One of my suspects if for a gene that is someones described as an autism gene, but in fact learning disability and language disorders are a big part of phenotype as well.

And yes @ByTheGrace I have received a lot of abuse over the years for saying things like ‘’my son will never go to university” (not out the blue - in response to general conversation - didn’t even mean it as a bad thing, was just trying to explain where we are with him - he doesn’t understand words like little, requires 24 hour 2:1 etc) university is not part of his reality (incidentally NT ds3 has no wish to go to uni and people don’t have a problem when I say he isn’t going). I actually wrote one of the first academic publications that framed (severe) autism in a positive way so I know my understandings of autism. I don’t much care for the politics around it and keep out of it. Years ago Donna Williams/Polly gave me a lot
of advice on how to deal with that - and it has stayed with me!

@BertieBotts

Yes. I know. But it's clear what I mean (Isn't it?)

It wasn't to me, no. I just read as you wrote which was a clear separation of autism and disability. I do realise that is my comprehension now though.