A therapist referred me for NHS ASD assessment early last year and at the time I was surprised but thought it was worth exploring.
While I was waiting for the assessment to happen, I stumbled across inattentive ADHD and it made so much sense I made a decision to throw money at it and rush through a private ADHD assessment. Was diagnosed with inattentive ADHD, and initially put on medication that seemed to take me from being a slightly eccentric chatterbox with terrible executive dysfunction to being unable to string two sentences together and with no energy to interact with anything or anyone.
The ADOS happened while I was on said medication.
I was taken off the medication and put on a different one. Everything, and I mean everything, got better. I will always have ADHD, it's not given me a different brain or anything, but I am functioning like an adult for the first time in my entire life, and my anxiety is all but gone as a result. And as well as the executive function improvements I expected, I am coping better with change, I am socialising better (I am *reading* people better, I assume because I'm actually taking in the information they're transmitting). Everything has improved.
After the medication switch my ASD outcome appointment happened and I was diagnosed with ASD. I *just* met the ADOS threshold at 7 points (I am female, and was told this is fairly common). They said my communication difficulties were very slight, and that my verbal communication was 'unusually good', but that most of the points came from reciprocity.
I am not convinced.
The medication I was on on the day of assessment seemed to hugely worsen my social skills, and after the switch they got better - much better. If this is the case, surely that means they weren't 'real' ASD traits and were a function of the ADHD? Nobody at the centre I was assessed at has expertise of ADHD, and so nobody has been able to tell me if the potential overlap of the two conditions has been taken into account (because it hasn't).
What now? My gut feeling is that this isn't right. Does it matter? Can I get a second opinion?
I really don't know what to do and it seems like the opposite problem to what a lot of people end up with. Everyone on this forum seems very very sure and it's making me feel worse.
You are not the only one though. Circumstances were very different but I'm not "happy" with that diagnosis either and have tried to find things that don't fit. There are some, I didn't tick any box in one category, so the assessor found I speak in a strange way because I make strange breaks. I don't, and even if I did there it will have been because of the language. Anyway, I've been told what I'm doing is just similar to what happens when people are diagnosed with some terminal illness. Well, maybe. And this may not be the case for you, it could well be genuine. But the thing is, it doesn't really give you any disadvantage, does it? You are not going to get the wrong medication or a wrong therapy because there is no such thing for ASD. And you don't have to tell anyone. Guess you may at least show some ASD traits also with the ADHD medication, even if it's not quite enough to call it ASD. Maybe seeing such things, if present, in the ASD light will help you to understand yourself and see how you can cope with things? Guess you have learnt a fair bit in the last months, stuff you didn't know before, that's worth something, for yourself and when dealing with others. Maybe try to see it not so much as a disorder, just a way of being, that's what I'm trying to do anyway, because then it will perhaps not matter so much on which side of that artificial line someone has placed you (or only the things that actually cause problems matter, and they would have done so anyway).
I think the thing is I'm not sure the ASD-like traits *are* present in any real way now. I have a hunch that if I retook the ADOS I would score incredibly low.
My big worry, if I'm honest, is that I was planning to imminently transfer my ADHD care over to the NHS. If the medication craps out on me in the future (which is rare, but not impossible) I fear the NHS will go 'your symptoms came back because you have ASD, which isn't fixable' and refuse to help. I know what my baseline is now, and I have repeatedly tried to tell them, but they're not listening, and I have no reason to believe they would do so in the future either.
Had I been diagnosed with ASD before ADHD, I would have been left on that first horrendous medication, because nobody would have seen anything unusual about the fact that I suddenly couldn't hold a conversation.
But if I'm lucky, it will never come up, and then it won't matter. *If* I'm lucky.
Hmm, I see. Have you told your GP about the ADHD diagnosis and does he/she believe in it? Maybe if the GP (who quite possibly has not much experience with either) believes in it and you get into any trouble about medication at some point then you will have something behind you. It seems doctors often believe each other a lot more than they believe their patients, even if the doctor to be believed makes no secret of the fact that they don't have experience. That would then also be someone who has seen you the way your are now, rather than only seeing you when things have already turned wrong. Fingers crossed that it's not needed, but feeling safe would probably be better.