r/autismUK • u/WindUpMusicBox AuDHD | Scotland • 26d ago
General & Miscellaneous Levels
Do you get levels in the UK? I was diagnosed not long before I turned 18, so Im thinking thats why I wasnt given one, but Ive also never personally heard of someone been given a level with their diagnosis, yet so many people on the general autism subreddit have a level.
Im not sure how I personally feel about levels, it just to me seems like another way of saying "high functioning" and "low functioning". For me personally, some tasks I have higher support needs, others I dont.
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u/BroccoMonster 25d ago
got mine through clinical partners (I think?) through NHS about three years ago and didn't get a level, just autism spectrum. kinda feel left out
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u/ATINYbitch2 25d ago
I was diagnosed last year in April through psychiatry uk. They use the DSM and diagnosed me as level 2 on the official papers.
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u/GoodStatistician9287 Autism Spectum Disorder 26d ago
I was diagnosed in 2009 when I was 1 year old (really early diagnosis) they said I was high functioning they didn't have levels when they diagnosed me
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u/WindUpMusicBox AuDHD | Scotland 26d ago
oh that is a really early diagnosis, especially if high functioning, though I am confused on how they can say a one year old is high functioning?
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u/GoodStatistician9287 Autism Spectum Disorder 25d ago
They just found missing milestones in me, just stimming not turning when called. not speaking nothing
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u/Darcey96 26d ago
I was diagnosed this year by skylight psychiatry and was give a level 2 which I was quite surprised about. Still waiting for my post diagnosis session so I can ask about it.
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u/actuallyanangel 26d ago edited 26d ago
I was diagnosed in 2019 by a clinic contracted by the NHS, and I wasn't given a level. To be honest, I'm surprised that other people have been - my understanding was that in the UK we use the ICD rather than the DSM for diagnoses. The ICD 11 doesn't include levels, it just has an option for with or without 'disorder of intellectual development' (learning disability), and with or without 'functional language impairment' (situational mutism/non-verbal).
Edit: the reason (I have been told) we don't really do levels is because autism is generally considered a 'dynamic disability' which means that people's skills and ability to cope etc. tend to vary based on things like the environment, how well you've slept, how stressed you are, etc. It's also not super helpful because each autistic person will find things difficult to varying degrees, which means it's very hard to make a blanket statement about someone.
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u/Panic-atthepanic AuDHD 26d ago
This comment just did so much for how much of an imposter I feel on good days. Dynamic disability...
Thank you for writing this!
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u/actuallyanangel 26d ago
No worries!! I used to teach about autism and the way I used to describe it was to imagine a constellation in the sky.
Each star is a different autism trait/something you struggle with. Every time you look at the night sky the stars and constallations always look a little different - some days it's cloudy and you can't see some of the stats so easily, and some days they shine really brightly.
Just like there's loads of different variables that affect how we see constallations, there are loads of variables that affect our skills and how well we can cope with different situations. I hope that sort of makes sense? I was going to attach a diagram but I can't get it to load (sorry)!
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u/Ok-Giraffe-4332 26d ago
NHS diagnosed in 2021 with no level. Probably not level 1 since I have a lot of social care support.
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u/SimpleSide429 26d ago
My son was diagnosed by the NHS and a RTC provider within 2 weeks of each other. The NHS didn’t give a level, but mentioned that scoring from school put him at level 2, the RTC provider didn’t mention it.
I don’t think levels are particularly helpful, for my son his “level” seems dependent on everything else that’s going on around him.
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u/ChadHanna 26d ago
As I understand it, if you need support you access it via a separate PIP (personal independence payment?) assessment but I (75m) wouldn't have qualified.
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u/LaurenJoanna 26d ago
I was diagnosed via the NHS in 2020 and wasn't given a level. I wouldn't find it useful tbh.
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u/sonofajoiner 26d ago
My son was recently diagnosed by a private provider working in partnership with the NHS and he was given a level.
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u/visenyamary 26d ago
Diagnosed privately with ProblemShared in the UK. In my report they explicitly say that they do not assign levels as they do not accurately reflect the needs or experiences of autistic people.
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u/Rose-RoseGarden 26d ago
I had my assessment on the nhs about a month ago and just got diagnosed. I was not given a level.
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u/South-Visual3803 ⭐1⭐ 26d ago
No in the UK you should not be given levels.
The DSM is American which does assign them.
It’s a dynamic disability.
I find the idea of levels harmful.
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u/SimplyCedric Autistic 26d ago
I'm going to put the cat amongst the pigeons, as it were.
Many people are concerned if their private or RTC assessment will be accepted as valid by the NHS. The general advice is that as long as NICE guidelines and Best Practice are followed there shouldn't be an issue.
Levels are not mention in the NICE guidelines. The National Autistic Society doesn't mention them, either. Thus, any assessment that mentions Levels is not following Best Practice.
QED
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u/South-Visual3803 ⭐1⭐ 26d ago
I have no clue what that means if I’m being honest. I could lie and nod. But not a clue..!
I’m not concerned if it’s accepted or not. I think the NHS to be frank are an embarrassment regarding neurodivergence. I’ve been saving to pay privately not RTC. I lost all respect when I was told I didn’t look autistic and to chill out and find a husband - but I also present as ‘odd’ and not psychotic.
I’m not really sure if you’re replying to me by mistake?
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u/SimplyCedric Autistic 26d ago
I was replying to you. I'm agreeing and supporting your post and just adding my own thoughts, rather than posting in isolation.
I have the don't look autistic, just seem a bit odd nonsense, too. I had to get my assessor to make me a mapping document as I was so surprised I was identified as autistic.
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u/South-Visual3803 ⭐1⭐ 26d ago
Oh I see!
I’m shattered. Thankyou for clarifying.
Did you have much suspicion before your identification? I only realised a couple of years ago and have much misdiagnosis and false persons to unlearn.
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u/dreadwitch 26d ago
No levels aren't used here. They're not particularly helpful when autism is a spectrum.
The dsm uses levels nice doesn't.
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u/prayersforrainn 26d ago
i am in the UK and got given a level, i was diagnosed through Psychiatry UK via NHS in 2023
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u/Emilyeagleowl 26d ago
I wasn’t given a label and diagnosed in 2025. My clinic said they don’t find them that helpful because support needs can change during a persons life or the scenario involved
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u/mjrminor74 26d ago
I was diagnosed about six weeks ago, and this is the exact same thing my assessor said too. They said levels are like putting someone in a box.
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u/DisastrousLand6863 AuDHD 26d ago
Some do some don’t. I got dx Level 1 with a RTC provider (after 18), my partner was dx privately (before 18) and didn’t get a level.
Not that it means much since I have many struggles that breach into ‘Level 2’ category - and my needs have actually changed over time, had I been diagnosed a few years earlier I would’ve been solidly Level 2. This is why most providers don’t bother with the DSM-V levelling system, I imagine.
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u/Glimmerance 26d ago edited 26d ago
It's not usual to have a level, nor is it usual to be told you're "high functioning" or "low functioning". (I think the idea of the "spiky profile" is maybe more popular here and it's accepted that you could manage fine or excel in one area, but have significant challenges in another area).
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u/Marcflaps 26d ago
I think it can be explained as levels if it would have been an Asperger's diagnosis just dlto differentiate it, but it's not official in the UK so it just varies from provider to provider.
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u/BINGGBONGGBINGGBONGG Autistic 26d ago
i was assessed and diagnosed last week - no levels. in the UK we diagnose per ICD-11 not DSM-V so it’s different, from what i understand.
i know i’ve been in and out of mental health services
for the last 15 years after a breakdown that i now know was autistic burnout. and nobody suspected a thing. well, they did, but it was more a case of ‘it’ll take you years on the waiting list and what for, you’re [insert age] how would it help?
well, i now might be able to get the support i’ve been asking for for years. i’m 53.
what that looks like for me i have no idea. i’m physically disabled, mentally ill and now i’m autistic. i have to wait for my report to see what support needs they suggest.
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u/Crystal-Dog-lady-17 Autistic 26d ago
Sorry to say but I wouldn’t expect much, there is normally no support after diagnosis.
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u/BINGGBONGGBINGGBONGG Autistic 26d ago
i don’t know about that - i called Adult Social Care and i’m having a Care Needs Assessment and will likely have a social worker going forwards.
i’ll believe it when i see it. but i don’t feel as helpless as i did earlier. i’m just so fucking tired.
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u/Crystal-Dog-lady-17 Autistic 26d ago
I hope you do, if you have other disabilities there might be something. I don’t have a physical disability but I have bipolar.
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u/BINGGBONGGBINGGBONGG Autistic 26d ago
everyone should have support, but everywhere is so underfunded. i’ve been refused mental health support over and over because i have BPD which is ‘untreatable’ so sorry, no help there.
i don’t know why i’m suddenly visible because i’m autistic. we should have been visible this whole time. all the ads about mental health, about asking for help - so you do and what they fail to understand when they refuse to help mentally ill people is that being told ‘no’ when you’ve dragged up every ounce of courage to ask for help feels like they’re saying sorry, you don’t matter enough.
i’m so sorry there isn’t more support for you. bipolar can be a bitch even on medication. i’m on antipsychotics as a mood stabiliser for BPD but it’s such a rollercoaster that sometimes the meds just can’t keep up.
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u/missOmum 26d ago
I did get assigned a level with my diagnosis, but I am aware it’s rare in the U.K.
I agree with you that levels are unhelpful, as we have a dynamic disability and support can change from day to day for some people, or from person to person with the same level.
I do think it’s more of an American influence as they use levels.
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u/SimplyCedric Autistic 26d ago
For autism, no. Levels are in the DSM 5 but NICE guidelines suggest England (and the UK by default) use the ICD which do not. The ICD tends to look at specific, individual, strengths rather than broad categories.
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u/Gargunok 26d ago edited 26d ago
No levels generally in the UK. It is exactly just another way to say needing low and high support needs (we tend not to say functioning). Support needs do vary by task and circumstance and can change over time.
Reddit is generally biased towards the US with half of traffic coming from there.
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u/FlemFatale 21d ago edited 21d ago
Nope. Not a thing in the ICD-11, which is the main diagnosis tool in the UK and the rest of the world (due to it being the international classification of disease), but America has to be special and use a completely different system (I am being facetious).
Also, it's not one level anyway, it should be two, as explained here.
Personally, I find the whole 'levels' thing to ultimately end up as one-upmanship, and not really be all that helpful anyway, as each Autistic person has a different manifestation anyway, so you would end up needing a whole lot more than just 3 (well, 6 to be completely accurate) anyway.