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?

I'm still interested in what happens to those who are neither classic autism nor aspergers profile.

While I understand OPs frustration I think it's important to realise that people with autism develop and change and are greatly affected by the environment they are in. So for example just because a child is non verbal age 7 does not mean they will always be non verbal. Theres a guy who does talks for the National Autistic Society who was non verbal throughout primary school, now he is doing speeches at conferences.

Labelling children at a young age as "low", "medium" or "high" ignores the fact that the right support could enable them to do a lot more in future. That's why autism is described as a spectrum, so that children aren't "written off".

We're left to get on with it. Social services won't have anything to do with us because we're too "high functioning" for their learning disabilities team and their mental health team (who I was referred to) won't have anything to do with us either.

Sorry to hijack but when do you know if it's other disabilities alongside autism or a learning difficulty? Was this always obvious?

@gliiterryballs My assessor actually used the term 'non verbal episodes' on my report. I didn't know it was wrong to say this. How would I? She is a leading expert in the field.
Periods when you are not verbal (aka non verbal episodes) are not the same as being non-verbal. A leading audiologist might tell someone they have periods of deafness, but they wouldn’t have the same difficulties as someone who had never heard would they? When we talk about non-verbal autistics (of whom there are many) we usually mean children who never learn to use verbal communication. Sometimes we include children who have very limited language but most would describe that as minimally verbal.

Boboshmobo, my daughter was diagnosed at two , your point about girls is interesting, as I find virtually all information and groups for girls useless , as she doesn’t mask .I would describe her as moderate as she attends a special school , it she is verbal .

i think what a lot us realise is that autism as a diagnosis on its own isn't all that descriptive, but what muddies the waters for most Autistics is the co-morbids that go with it... which you can't separate out.

my son has autism, adhd, dyspraxia, sensory processing disorder and some other stuff going on, and while he is intelligent and doesn't also have a learning disability, he has very delayed social/emotional ability, he attends special school, needs constant supervision and is unlikely to ever live independently.

Labelling children at a young age as "low", "medium" or "high" ignores the fact that the right support could enable them to do a lot more in future. That's why autism is described as a spectrum, so that children aren't "written off".. No autism is described as a spectrum because the profile of deficits impacts the result. So if you take three unrelated disabilities/deficits and put them together you could come out with very different needs and abilities. For example, sight, hearing, IQ. Think about the outcomes for different combinations of poor to no sight, poor to no hearing, and high to low IQ/function. THAT is the spectrum. The same types of deficit but in different size interacting.

Knowing if someone is low or high IQ/function ABSOLUTELY IS important to outcomes and far from writing them off is key to providing support.

Victoria White had an article in the Irish Times about her son's autism, which is a very rare genetic type whose onset starts between 3 and 8 years of age. Apparently lumping all autism under the autism spectrum label is making it much harder to research the causes and possible treatments. I wonder how many other particular types of autism are being under researched because of this umbrella label

Apparently lumping all autism under the autism spectrum label is making it much harder to research the causes and possible treatments. I think this is likely to be true

My son has an underlying Chromosome deletion , which is thought to be the underlying reason for his autism and learning disabilities.

My son also had a microarray which found a chromosome deletion ,he doesn't have dysmorphic features but some children with similar disorders do.

I think u have summed it up for me .

@Toomanysquishmallows

My Dd has very few of the expected markers too.

Never does repetitive things
Never stims
Talked really early, was eleoquent and friendly
Never lined things up
Has always had friends
Not particularly obsessed with any one thing ( maybe Taylor Swift)

Yet she has so many sensory issues and now as a teen will only speak in an environment she feels safe in. Has struggled with anxiety since about 8.

All her symptoms flew beneath the radar, they were so unoticeable. But she IS ASD. Girls present very differently l think

Arseinthecoopwindow , not all girls present differently , my daughter was diagnosed at two because, she didn’t speak more than a couple of words , and had a very limited attention span .

That article is so interesting. Thank you for recommending.

I'm glad you could find it. I was on my mobile and didn't know how to connect to it. I'm home now so here is the link for anyone else interested www.irishtimes.com/life-and-style/health-family/victoria-white-my-sunny-boy-suddenly-exploded-with-anxiety-and-violence-1.4793790

Thanks spendonsend - I will read that later. I do think that genetic diagnosis will be helpful for many. My son’s geneticist is convinced his autism and learning disabilities are caused by a de novo mutation. Covid has delayed our answer to that question but I do think it would be a potential incredibly helpful piece of information - far more than an autism diagnosis.

I used to think along similar lines, I now think it is more akin to a mass spectrograph, with the x-axis as traits or characteristics instead of molecular mass and the y-axis as impairment or impact. Just as every chemical of substance will have a spectrum, every individual will have a spectrum, but only specific patterns will correlate to ASC or any other condition.

Hi sorry to derail but was wondering if you have a source for this diagram? I have never seen autistic traits broken down in this specific way and any more info on this would be really helpful.

I guess my point would be that while we all have a spectrum of characteristics and neurological traits that in no way means we are all on the autistic spectrum somewhere.

I am an autistic adult, but was diagnosed at 8 (along with ADHD). In my opinion YANBU that Autism should be sub-categorised, but YABU that only those server should be classed as autistic. The reality is that autism is a 3D spectrum
and really can differ between person to person. For example you wouldn’t tell Rose Ayling-Ellis that she’s not really deef because she can speak and has a job that requires good communication, so I don’t think it’s right to tell an autistic that there struggles (which are very real) don’t matter.
I understand why some people (on both the parents of server autism and autistic adults side) feel that they are having there experiences invalidate by the other side. Therefore, in my opinion, both parents and ‘actually autistics’ need to be a bit more understanding of ALL the struggles that autism can bring for everyone, along with the remembrance that everyone is different (same way NTs are). Ultimately anyone with autism in there lives (be it themselves or family/friend’s) just want awareness and acceptance.
That being said I don’t like the terms ‘high and low functioning’. Because it gives the impression that one is a different category of person . In ‘high functioning’ case (which I appreciate I myself am), it implies that I am a very good copy of a human being but not actually a real human. ‘Low functioning’ I find is implying they have nothing going for them (and I appreciate in SOME cases may feel like it’s the case) and it dismisses any good qualities they may have, be it just being witty or good at art for example. I personally prefer “high support needs” instead of low functioning and “Low support needs” for high functioning. Same meaning. Expressed more authentically.
What I would like to see is less generalisations being used when talking about autism. (And, sorry, but MN is pretty bad for this). I also would like to see proper discussion has taken place apart from people saying “my experience trumps yours”!