I have ADHD-PI; now I've been diagnosed with ASD but not sure I agree with it. What now?

Hello. 

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. 

Parents
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  • Hello 808

    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.

Children
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