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.
I'm so sorry this reply has turned out far to longwinded and probably not to the point. But I will post it anyway, you never know there might be one useful sentence :-)
I am curious how in UK having the diagnosis on paper will affect you.
It is interesting in itself that a therapist thought of referring you. There must be something in your story that put your therapist on that track?
I'm curious if you are male, female or x? One thing I have learned these past years is that autism doesn't always look like autism. And that nowadays the spectrum has opened up a lot to include a number of manifestations (I'm thinking particularly of female autism types).
I'm very curious if you feel extremely tired (for days) after social events (like weddings, parties). After work, do you need down time, or can you happily have a long conversation no problems after a long day at work?
It is of course completely possible that they totally have the wrong end of the stick and you got stuck with an incorrect diagnosis. In which case it might be sensible to get yourself a second opinion (but would you have to pay for that???) Surely NHS can't have a monopoly and not offer second opinion???
You say everyone seems pretty sure about their diagnosis - but I have met a lot of women with autism who after the diagnosis they were indeed hoping for, they suddenly get flooded with doubt. Is this right? Surely it is not that bad? Can other people tell? Does this change me? For me it was like: did I fill it in correctly? Surely it can't be that bad? I have a university degree and I held down a job. I am sociable and have an adventurous streak...
Here just some info about myself, as I have ASD/ADHD - just in case there is something of interest to you (if not, just disregard my banter ;-) )
I would regard myself as an excellent technical communicator. (I do neighbourhood mediation and my friends appreciate me for an ability to listen and help them out with their personal problems). I have more "superficial" friends than I can manage and find it extremely easy to make friends. However, I do have underlying issues, quite deep running from deep in childhood and the main features would be anxiety, avoidance, disorganisation and stress (and the positives of being out-of-the-box and creative). I had very few friendships in childhood, even though I yearned for friends - and it is very likely that my social skills are acquired rather than innate.I was diagnosed with ADHD before ASD. The ADHD made perfect sense to me. One of the ADHD therapists I saw hinted I was in the grey area between ADHD and ASD. But I never though more of it - It never even crossed my mind to think of or ask for a diagnosis. When, in therapy (for burn-out) I talked about a family member with ASD being tested - the therapist grabbed the opportunity she obviously had been sitting on for quite a while: why don't you get yourself tested. And I went: "what? why? me?" And it felt like I fell from the ceiling. I just hadn't seen it coming even though I had laughingly often said in the past "oh I have some autistic traits". I remember being very disappointed that the ASD1 diagnosis officially stripped me of my ADHD diagnosis. But it has since been explained to me that this is in Belgium for official reasons, the ASD1 taking precedence in seriousness (in how it can affect you with regard to employment etc) and I still am an ADHD - ASD mix.
I read a fascinating book in Dutch called "in the zipper between ADHD and ASD". And it really turned on a lightbulb for me.
Sometimes the ASD and ADHD kind of morph into one (executive function issues get magnified). But sometimes the needs of both ADHD and ASD manifest themselves separately and actually you need to cater to two hungry wolves:
On the one hand you crave stimulus but on the other hand you can't deal with overstimulation.
You long to go on holiday to a crazy new place - and yet you feel avoidance because of ASD reasons.
Someone once put it nicely: having both ASD and ADHD is being in a car and putting your left foot on the brake and your right foot on the accelerator and pushing down hard with both feet.
Reading a lot about female ASD has made me realise that this is an important part of my identity - but that it might not always look like ASD to the outside world. It explains a lot of how I feel horrible after social occasions even though I crave them. I love meeting new people, but I break into a sweat and feel awful afterwards.
Anyway, I do hope it gets sorted out for you. If you really feel no recognition with ASD characteristics at all - that doesn't seem right to have the diagnosis.
Can I ask what medication made you worse?
The benchmark formulations for adult ADHD are pretty effective (I have it myself), the only issue is their price and access to them.
ADHD goes hand in hand with Asperger's in my mind (I have that too), so I would imagine it's pretty normal to have both.
What is it you are concerned about?