ADOS-2 question

Shardovan said:

points —wise separating NT from autistic,

You know, I'm not even sure there is a clear dividing line between autism and being NT. Whilst people who parrot "we're all on the Spectrum some where" certainly are talking rot and minimizing our experience and identities, I do believe they will one day identify a number of different neuro types which all have different thinking styles and perceptual experiences. It's not a simple NT/ND divide.

In the first place folks with dyslexia, dyspraxia, ADHD and all that share some of the same genes, some of the same experience and are also neurodiverse, albeit they are not necessarily autistic. In the second place, I see so many traits in some key people around me, who would be unlikely to meet the diagnostic criteria for autism, but who share commonalities of thinking, or of sensory experience, or of focused interest with me nevertheless. Some of them I am related to, others I have gravitated toward as kindred spirits. Thirdly, there are a raft of things in the human experience which you don't have to be autistic to have but are massively more likely if you are; being LGBTQ+, being left handed or ambidextrous, having Irens or an eidectic memory, being a synesthete...and all of those things come with perceptual difference and unique perspectives and gifts.

Personally, I see humanity as a series of little ven diagrams. We are each more one neurotype than another, sometimes with people in the intersections between types. I am quite definately autistic, but also am a synesthete and dyslexic with Irlens.

My hope is that just as we have stopped wrapping left handed kiddies over the knuckles for being in league with the devil, and mercifully have stopped prosecuting or trying to covert people for having different gender and sexual identities, we might one day accept as a society that all neuro types are equal with something to contribute to the whole, but some just need their environment a bit different and the attitude of others to be more accepting.

And you are absolutely allowed to own your own identity, no matter what anyone else thinks about it. Anyway, take a hard look at your family...you got your genes somewhere, they might not notice half your traits as being different because they have some of them too and that's normal for them, perhaps??? I'm suddenly looking at my mother in a whole new light lol.

The important thing is to understand ourselves and believe in what we can do :-)

Hi Dawn, and thanks for giving such a considered and helpfully nuanced reply. Really appreciate it. It does makes sense, yes. That concept of how autism’s outward exprsssion (if not its consistent internal presence as an unavoidably fixed constant) changes over time is especially insightful and a good thought for me to hang on to as I try to get my bearings post-diagnosis. Also, I can see why fixating too much on where the lines (separating level one from two, two from three) are could be a not needed rabbit  hole, ultimately. Especially when (if I’ve understood correctly) there’s even a bit of bridging (‘autistic spectrum without clinically defined autism), points —wise separating NT from autistic, so one is firmly in the territory of neurodivergency even if simply *on* the L1 line. My score seems somewhat above said line, but I confess that I do still also want to know where the Level One Ceiling is, and will probably continue to trawl about the internet just to satisfy the part of my brain that hates to leave a question unanswered. As much as snything I’m puzzled by the elusiveness of straightforward and unambiguous outlines of the scoring. I mean, does it go : 8-20= L1, 21-30 (or similar)= level 2 and so on? If so, why is that information so cryptically hidden away from those who’d naturally want, if not exactly need, to know? Anyway, I’ve emailed one if my assessors to ask if he’ll tell me the answer. He’s on holiday for another week though. Will put on here what he says if he allows me to know. To clarify, I know what my score was (15), I’d just love to be able to plot where that sits. Even if it’s just so that when I tell family they won’t be able to, with good intentions, minimise  anything and make me feel like I’m not being allowed to own definitely a core part of who I am as confirmed to be real. 

I think your therapist is sort of right and sort of wrong. If they scored on a 'level system' and you are curious, I can't see a reason why you shouldn't know and understand how they saw this on the day. I can see why you'd be interested and I would ask that question too. I don't see why you can't be told. But it is only a reflection of what they saw on the day.

Indeed, when I was diagnosed at the Lorna Wing Centre  I did ask the question. The answer was that with their DISCO and use of ADOS they don't assign 'levels' as they aren't helpful for anyone really. The point is simply is the criteria met or not. The levels in the American DSM 5 are really to help out social security. For the individual, it's the personal profile, I.e. the content of your report that is useful.

The business of being 'just over the line' is ultimately problematic because the expression of your autism can change over time and in different circumstances and contexts. For instance, from the outside, the social side of things would have been glaring obvious as a pre-schooler for me. Now, I compensate so well for what I can't read with my intellectual capabilities, I doubt anyone would notice much. A few of my friends were surprised. Ok, I don't always get their jokes and can't always keep up in big group discussions, but I'm no social shrinking violet. On the other hand the repetitive behaviour stuff was less in evidence as a kid, but is coming to the fore much more as I get older.

The other reason levels don't mean too much is that the Spectrum isn't really linear in nature. It's represented as a figure of 8 for a reason. It's not really that you are mildly or severely autistic, but rather that you are just autistic. All of us, I think, have some real strengths because we are autistic and some more difficult areas and some things which can be truly problematic. It's not because I do well professionally and have friends that I am mildly autistic, or only enjoying the benefits, just put me in a medical situation, shock my senses and stand back for the mother of all melt downs and sky rocketing anxiety... others I'm sure have few such problems, but a social engagement would be too much to bare.

What I'm saying, I guess, is that they are right that levels are pretty meaningless to you on a daily basis. What you need to understand is how autism is effecting you in different situations and contexts, how you can maximise your talents and navigate your problems. And we are all vastly different in that regard. We can't really fit on a slidy scale.

Does that make sence?

Ah, many thanks Roy appreciate the guidance.

Hi, I wouldn’t worry too much, if you do want to edit, click on ‘more’ under your post and edit will come up.

Sorry, can't see a way to edit my post so please forvive the spelling errors. Also, for my L2 example, I mean to say 'just over the line, or well over it' (my original sentence made no sense!). [Now fixed above, thanks to Roy] Thanks again.