Autism 'levels'

[User3626636244]

Is it a widely used thing?

DS is autistic, diagnosed aged 4 in 2016. Diagnosis is simply autism spectrum disorder, which I thought was normal.

I've spoke to and met a lot of other parents with children with autism and they refer to their child's autism as level 1/2/3. I know it differs per area but this was locally to me.

I met a parent who said her son had autism level 3 and asked what my sons level was. I was just baffled, I don't think he needs a level and I wouldn't know what it is anyway.

I have had always had the mindset that you are either autistic or you're not. Yes some children and adults are more severely effected than others but it is a spectrum and where a child can struggle in one area they can not struggle in another. There's no clear cut levels of autism imo.

I am just genuinely curious. Even the senco at DS's school refers to my sons needs a severe autism and their highest need student - he's at mainstream - for now!

Many aren’t told a level. The levels come from the DSM-5 which has 3 levels of ASD.

For what it's worth, the levels in the latest DSM refer to the level of support required.

1 = Requires support
2 = Requires substantial support
3 = Requires very substantial support

You are, however, correct - there aren't clear-cut "levels" in autism, because every presentation is different. Not only that, but the "level" varies from day to day; I'm a heavy-masking, late-diagnosed, generally-low-support-needs autistic 45yr old. Most days, you'd never know that I'm autistic...if I'm with my wife, you'd absolutely never know it. Some days, though, I can barely function to the point that you'd wonder how I ever managed to get through school, much less hold down a successful career, get married and have a family.

That's why the level system is...notably artificial. It's constructed purely so that the healthcare system can prioritise resources...in fact, it occurs to me that because the DSM is US-centric, it's more likely that it's so that the US health insurance industry can assign a dollar value to the claims that arise from it.

That's not a cynical read, just a practical one based on the system that the DSM exists within.

No, we were given the "spectrum meaning a wheel" thing with spikey profile explanation from CAMHS.

DS operates very differently in the Y10 word than he functioned in the Y1 world, and needs massively more support now than he did back then. I don't think he's got more autistic, but he definitely needs more support because the mainstream world has got exponentially more complicated.

I could be wrong here, but I’ve only ever come across these levels when viewing posts or videos from American sources? I’m in the U.K. and have never had this explained from a diagnostic POV from any paediatrician here. I think maybe levels more describe to someone supporting the autistic individual, as to what their needs may be. I don’t think it’s quite as simple as that though.

That's because the levels exist only in the DSM-5, which is mostly used in the US. In Europe, the ICD-10 is much more widely used, where autism falls under the F84 classifications (subclasses F84.0-F84.5, with the remaining subclasses left blank or "unspecified"). You can see more detail here:

icd.who.int/browse10/2019/en#/F84

As you can see, the ICD still recognises Asperger Syndrome, which is somewhat behind the times...

The term Asperger’s is not now used when diagnosing, in the U.K. I’m unsure as to the rest of Europe. The ICD-11 is now in use and this also does not list the categories outlined in the ICD-10 so I guess they’ve dropped these diagnoses in line with the general ‘ASD’ diagnosis now. My son was diagnosed in 2019, but I do recall at that time relating his attributes more to PDA and again, this is now not used when diagnosing. We now know he has a 2p16.3 gene deletion

Good call, looks like I'm behind the times too. I hadn't actually paid much attention since ICD10!

I think maybe we’ve all had a lot going on in the last few years. Don’t quote me on that though… 😆🫣

Actually, I feel doubly stupid now, 'cos I finally got my diagnosis last Monday, and the confirmation letter explicitly says it's a diagnosis under both the DSM-5 and ICD-11.

Yeesh.

Your brain only saw the DSM-5 because it’s familiar. 😅 Looks like they’ve aligned then, which can’t be a bad thing for continuity.

It's more like..."my brain only saw DSM and ICD and didn't pay too much attention 'cos I was exhausted after the assessment". I've been in all-day meetings before, but that four hour assessment properly took it out of me in a way I haven't experienced before.

(as in...didn't look at the numbers, which is very odd for me)

Good point about the numbers. Are you relieved to have seen it in writing?

We've gone down the genetics testing route and now I’m questioning my whole reality around myself and what I once thought of as my ‘little ways’, that now seem questionable.

Well, I've pretty much known I'm autistic since the beginning of lockdown (long story, but basically it started at diagnosis-by-algorithm and ended up in an autistic community which crystallised it all). It's great to have it confirmed formally, not least so that I know I'm not crazy...or worse. I mean, if you look at masking and remove the context of intent, it looks an awful lot like sociopathy...

However, my main reasons for wanting it had nothing to do with confirming what I knew; I mean, my employer is pretty understanding and constantly asking what they can do to help, but that may not be true for the next one (or the next...etc). There's also the fact that I'm becoming less able to mask and deal with the sensory issues as I get older, so while I'm extremely low-support-needs now, that may not always be the case.

As for genetics, that's a foregone conclusion in my case. We know that it goes at least three generations back on my mother's side of the family, and it's always been referred to as "our family issue" - because even when I was a kid in the late 70s/early 80s, "autistic" was a one-way ticket to "special school" and never having a normal life. At least one of my great aunts was committed in the early 1900s for being no worse with the world than I am. She ended up as a ward of the state and so heavily medicated, as was the way, that we suspect she was barely even present for the rest of her life - that happened in her teens. The only time I ever met her, she was a shell of a human being.

That's why it was effectively a family tradition to teach the next generation how to hide in plain sight by masking heavily. While I don't support that approach now, it was also absolutely the right thing to do then, because it's allowed me to lead a very successful life. I'm just glad that we know so much more about it now, so that it can be dealt with in a more targeted, understanding way.

It’s clear to tell what your drive was for diagnosis then. It feels sad to think that was and has been the reality for many since forever. It still is in many cases. I agree that it is a good thing that those things are slowly starting to shift and there is more understanding and acceptance of a difference from the ‘norm’.

I hope that continues and expands as we all learn more about neurodivergence.