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 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.

but that shows why narrowing boxes and trying to squash people into a smaller box isn’t going to work.

it’s all way too complex to be able to narrow things more without making it even harder for any support to be accessed.

as lougle has said you can’t just fit someone into a 1,2 or 3 box even. For ds he could fit into all three at times (or aspects of all three at the same time)

Yanbu

I agree with Hardpillow. Its so broad a diagnosis now as to be meaningless.

There is a movement for change and the professionals themselves want it.

An earlier poster gave the example of all cancers still being cancer - there is a huge variation between grade 1 and grade 4 and we make a point of grading cancer to determine the best treatment and give the patient the correct support. Having such wide a spectrum helps no one.

"the narrative of superpowers should be consigned to the bin"

Exactly. We don't do this with other conditions so why is it ok to do it with Autism? If you (general) think your Autism is a superpower, then fine. But don't tell me that my Autism is a superpower because I talk.

I don't like this idea of levels. You're ignoring the fact that it changes and you're either ignoring the strengths or difficulties.

There are some who always just sit in level 3 though and always will. Never have any aspect of level 1 or 2 an any day.

IME autism services don’t really offer much to that group.

This is really helpful, and interesting. It certainly makes sense to me. Thanks for the links.

I think you are absolutely right and yes it does dilute the meaning for severe cases. People have a friend who has it mildly and think well everyone who has it must be able to cope like that they just aren't trying hard enough.

I have the exact same problem with bipolar disorder. Most people have no idea that it is a spectrum disorder like autism is, therefore there are people out there going 'well I'm bipolar but I don't take medication I just eat healthy and exercise and I've always worked full time' so people think everyone with it can be like that. The reality is Ive known people with it who will probably never leave their facility. Certainly they will never have a job or a family. For me it was highly debilitating for a number years and if I stop meds I will end up in a facility with my life ruined, again.

I would really like people to understand that the autistic spectrum is NOT a single gradient or scale going from mild to severe. It is a spectrum like that of the colour spectrum, with different points/categories (colours).

It is actually more helpful to think of it like a wheel. The wheel has different elements and there can be a scale within the different areas. Every autistic person’s wheel (or profile) will look different and can change daily. Some people may sit at severe in most to all categories and not move up and down them at all. Those are what are going to be called profoundly autistic. Others will move up and down at different points.

So for example, I range from moderately to severely affected in the exteroception element, mild to moderate in the proprioception, mild to moderate in interception, mild to severe in emotional intensity, mild to moderate in communication differences and so on. My profile changes on a daily basis, so it’s insulting when people who are ignorant of what the spectrum actually is decide I have “mild autism” because I can talk and have a job. I do agree that those people with a wheel that sits at severe in most categories most or all of the time should be given a profoundly autistic diagnosis but I don’t agree that those of us that don’t should be discarded and have experience of our own autism minimised, which is what many people do. When my wheel sits with the majority of elements at moderate to severe I cannot function in ‘normal’ society. When I become overwhelmed or exhausted by masking I cannot function.

Agree 100% @Hardpillow

i rarely talk about autism these days because I find people have zero idea that autism can cause the severe disability my son has (he requires 24 hour 2:1 support).

i have even had people hurl abuse at me for being ‘negative’ because I said he would never go to university (fwiw I don’t think that is a bad thing, my youngest NT kid would rather walk across a bed of nails than go to university & I have zero issues with that). My son is non-verbal (not mute, he can’t speak). Has a very poor understanding of language - for example does not understand ‘little’ (does understand small), or next to, or in front of, or fortnight, or cherry or wrist or jealous - and so on, you get the idea. He would not be able to sit down for a lecture. He can write his name. On many days he can’t even go into a supermarket - even with 2:1 because he is too likely to lash out at those around him. But me saying he can’t go to university is ‘having low expectations’. WTF?

Sorry, what's mild Autism?

Fantastic post

Autistic with very high support needs, or autistic level 3, would be the preferred language to describe someone like the OPs child. Then autistic with lower support needs or autism level 1 would describe your meaning.

Yes OP I completely agree, and I have a child with suspected possible autism and/or adhd. The fact that it’s only very much suspected and not clear cut, at age 7, having got to year 2 in school with no major incidences (the school issues have always been very low level stuff) says it all. DH has a friend whose DC has autism who doesn’t sleep more than a few hours a night even with melatonin, who is still in nappies at primary school age, who is currently still non verbal and not really interested in the people around him. I also have adult friends who are quite clearly on the spectrum and one in particular does have some mental health struggles, but not permanently - more circumstantial.

I was accused of lying on here years ago for saying an adult relative with autism requires 24 hour care and is non-verbal - the person accusing me had diagnosed her husband with "autism" herself.

My profile changes on a daily basis, so it’s insulting when people who are ignorant of what the spectrum actually is decide I have “mild autism” because I can talk and have a job.

Well, realistically, compared to my relative you do have "mild autism". I think the old terms were clearer than ASD.

But that's still not overly helpful, given that some of us have days where we manage and days where we really struggle.

It is for some peop!e .my son has autism and severe learning disabilities,tbh, I find the autism diagnosis really unhelpful when explaining my sons needs to others, if I say he's autistic people expect him to be far more cognitively able than he is

Some people however are profoundly affected all the time .

By calling it mild, you're also ignoring the needs we have.

Generally mild autism seems to be an descri

@Hotpinkangel19 It was a typo. I corrected myself. Some countries it was 2013 when they stopped using Asperger’s as a diagnosis.

A description of how others experience their autism.

Yes I always thought Asperger’s had it’s uses as a describer. I’d agree something is needed.

And this is why it's unhelpful. Ignoring how much masking we do. You don't see the sensory overload, the difficulties in socialising, etc.

I do understand your frustration but it's still difficult even when outwardly they appear high functioning because it's not even, eg my dd is at university but she will only talk when she feels like it, needs personal care support because can't deal with showering etc (can physically but can't bring herself to do it most of the time) doesn't eat unless persuaded like a 3 year old, bribery basically yet when on in the mood she can converse at an academic level and you may not even realise she's autistic! Speech isn't everything for sure. Skills can be very mismatched

She's classified as mid level by her psychiatrist.

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

The "problem" these days though is if you spend 10 minutes in autistic spaces online, like tiktok or reddit, you'll find it's completely "overrun" with people screaming that self diagnosis is just, if not more, valid than professional diagnosis. Hence why we've ended up at the point where enjoying dancing like Wednesday Adams is "a sign you probably have 'the tism'".

It's a cute little quirky personality trait to these people, while for many others it's utterly debilitating.

But that's still not overly helpful, given that some of us have days where we manage and days where we really struggle. and on those days you “really struggle” would you describe yourself as as disabled as someone who is, non verbal, unable to keep themselves safe , feed themselves or go to the toilet or keep themselves clean?

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. perhaps because you have failed to understand that learning disability means a low IQ and that isn’t always the case for non verbal totally dependent autistics. Their difficulties mustn’t be better explained by their other disabilities.