For those diagnosed, what level are you?

Interesting.  Nobody mentioned any support needs scale when I was assessed.  I think I've been passing as NT for most of my life though, with lots of anxiety and other issues just automatically pushed down/hidden and extensive masking.  The result was often that I got blamed and judged, including lots of internalised blame adding to the load. 

And so, for example, I was regularly given negative feedback at appraisals or reasons for being made redundant that, looking back, were linked to being autistic.  The phrasing would often be along the lines of "You're obviously very talented, but..." or "Why can't you be more like so-and-so (very confident NT type referred to) or "Well, we asked so-and-so for an informal reference and they said that you keep yourself to yourself" and on and on.  The fact was that I was always excuciatingly anxious and needed support and accommodations rather than blame.

So, yes, I'd say that apparently succeeding in functionning generally speaking, whilst quite often throwing out some rather conspicuous malfunctions due to extreme autistic anxiety has been akin to an invisible disability.  People's expectations of me were rather higher too, and the blame correspondingly harsh.  And I certainly need a lot of rest to recover from all of this.      

 

A straightforward answer is that I was diagnosed as Level 1 on the ASC support-needed scale. I can pass as neurotypical 99% of the time when in public. However I have problems connected to my autism, such as exhaustion from social interactions. I was at the Autism Show (conference) yesterday, and after getting up and having breakfast today had to go back to bed and slept a further two hours, I just needed the extra sleep to recharge my 'social batteries'. I experience sensory problems with: noise of many types, bright  light and some textures. I also experience anxiety in crowds and in making telephone calls. I am diagnosed with generalised anxiety disorder and social phobia.

If, like me, you can function in society apparently 'normally', but have definite problems arising from your autism, you are no less autistic than people who cannot function in society. The difference is not only connected with different levels of ability, but also with external perception. Someone who struggles but succeeds in functioning, often suffers as much as someone who is unable to function.

That sounds a lot more appropriately nuanced. In one way I like the DSM 5 for not segmenting so much that you’re left feeling not autistic ‘enough’ (so to speak), but as someone for is functioning independently (I work, I pay a co-own mortgage, I don’t require a support worker of any kind) I sometimes feel a bit odd about that ‘everyone in all three levels requires support’ dimension not really being in play in my life. Am I the only one? 

Levels is a DSM-5 thing I think. We're in an odd position in the uk. For most things we'd use ICD-10 but the ICD-10 was dragging its heals over advances in understanding in autism so most diagnosis's refer to the criteria in the DSM-5. Now ICD-11 is a thing the NHS will gradually swap its reporting to the WHO (something its obligated by treaty to do) from ICD-10 to ICD-11. When that happens I expect DSM-5 will stop being used as a reference for uk autism assessments. ICD-11 also has subclasification codes but they're more for classifying intelligence and whether the autistic person is verbal / communicative or not. They're not intended to indicate a required level of support the way the DSM-5 levels are.

I wonder when diagnosticians started giving levels and what the guidance is for determining them.   I was diagnosed at the end of 2018 and it only confirmed that I'm autistic, although it did also include the ICD-10 code for Asperger's.  But I only got a brief letter and no report.  Feeling shortchanged.  

I brought it up with my therapist and she said 'why does it matter?' That's the overall consensus here too, and I appreciate people taking the time to post.

I suppose my intermittent fixation on the levels thing has been more likely from the start in my case. My mother taught profoundly autistic (and often otherwise-disabled children as well) for years, and I grew up next door to a lady with two non-verbal and very immediately discernibly autistic sons who outwardly are very much in their own world with no capitulation to NT convention whatsoever. I suppose when I've experienced such a dramatic contrast with my own much more masked and subtle experience, there's a tendency to feel I oughtn't to be claiming any kind of hardship in life, in relative terms. Except that I increasingly see that it's silly to think that way. My being able to work, function (with discomfort) in many day-to-day situations, etc. is just a different kind of autistic experience. I'm way more invisibly autistic than the people I've just mentioned, but the trade-off is more exhaustion and uninterrupted anxiety, and unavoidable sensory overload, and spiralling rumination and so on. I'm siphoning a constant energy drain into the mask, whereas a non-verbal or profoundly autistic person who will never work or secure independent living has other people making the effort to break into their bubble, adopt their language, adjust most environments and routines to suit them, etc. 

I take the point that Levels as a concept can over-simplify and segregate into irrational hierarchy that which is uniformly present in all 'levels', with the key difference being how much of the environment each unique autist can tolerate in one go, what reactions it triggers in them, and so on.  

When I was diagnosed in 2011 I wasn't told a level. Maybe it's a new thing for newer diagnosis, I've not heard it before.

so are you ready for it? 

hypervigilance - next level S for Smash'em'all (like V for Vendetta) <--joke

Levels would be another attempt of theirs at stigmatising autism, like high/low, so I'm against personally

"Barking" I think is my current level.

But I'm fairly peaceful, happy, and well disposed towards the world, since getting my diagnosis very late in life..

Autism requires mental discipline and a love of love to make the world work, I feel. 

I'll go and look at the vague and faintly confusing words on a bit of paper I got from a trickcyclist stashed away hereabouts, and see if there is any level to my Autism indicated. Reading a gospel, to be honest, has been way more helpful and less invasive than any MH "help" I've experienced or witnessed so far..

And you ain't paranoid if they really are out to trip you up... Apparently the correct phrase is "hyper vigilant". 

Embarrassment ? I trampled it down 20 years ago. I can talk about any and all embarassing details of my life and past

Paranoia? My dear friend never leaves me 

Level? Grandmaster of course. Never paid attention to other's levels, can't help you there man

Ratios? leave it to accountants, when they at work.

Sense? What does that even mean

Hopefully that explains my atitude towards issue

A lot of autism diagnosis's don't state a level. Mine didn't

Interesting. Probably for that very reason that they collapsed  a few things into one level. If your spiky profile on any given day could give you that kind of two-level assessment result, than it's best to plit the difference with a mean average. I think mine is broadly similar then. So I can stay :-) That's a relief!

I have never been told a level. I was dxed with Asperger's in 2019. My social communication score was at classical autism level. and my social interaction score at Asperger's level.  There must be difference though between   those who score like I did and those who scored classical autism level for both or Asperger's level for both.

Thanks Lois, that's really helpful and not at all wittering. I think I just had a bit of an irrational moment, and instead of letting it pass sought validation before this specific specific anxious rumination took hold. 

I believe that we all have a place on here, and there and everywhere. Everyone needs validation in some form, it’s proof that we exist, to be noticed. I’m lucky because I’ve made some friends that are autistic and the one rule we made is any conversation goes…as long as it’s  a conversation. We all accept each other’s ‘happy things’ ….. im not sure if I’m answering your question or just wittering!!!! Lol 

Dont worry, the one thing we Autistics are is honest… someone will make a comment if what you’ve said is off the wall Xx 

In the DSM-5 they have levels one, two, and three of clinically diagnosed autism. Level One encompasses Asperger's, which in the past was kind of its own separate thing, ultimately problematically as far as I can tell. 

Hi 

I hope I dont open a hornets nest with people but I don’t understand the levels you talk of?? Could you explain them to me… keep it idiot proof as I’m not the smartest spanner in the tool box! 
Lois