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Second opinion to dispute an ASD diagnosis?

rustyb

Hi all,

First of all, I feel terrible writing this because I know loads of people wait years for an ASD diagnosis. However this has been troubling me for a while so I wanted to find out whether anyone has ever taken a second opinion to dispute an ASD diagnosis? 

I’m 38 and was diagnosed with Level 1 ASD just over a month ago following assessment by Psychiatry UK. This was on completion of an hour-long video appointment, which in itself followed the completion of lengthy questionnaires by my wife and I. I also completed the AQ50 test and scored 38/50. 

I understand that a bit of imposter syndrome is normal, but I keep hearing experiences from autistic people both on this forum or YouTube which seem a world away from my experience. 

It’s true that I’ve always struggled socially, and from a young age I do recall never quite “getting the rules” on how everyone interacted. I always tried my best but people never really seemed to get me. If I did have friendships, I would often only have one friend at a time and would get intensely anxious/jealous if that friend invited other people out with us as I would find myself getting cut out of conversations. 

More recently I’ve found that I struggle with family events. My wife is from a really sociable family, and there seems to be something going on every weekend. It’s caused tension in the past because after a week at work, I would see a supposedly fun family event on a Saturday as equivalent to another day of work due to how stressful I found it. Luckily my wife and her family are very understanding, and even pre-diagnosis it was recognised that I couldn’t cope with attending every single one of these events. 

So on the social side I see the ASD traits, but where I’m struggling with is the sensory challenges and special interests. I’ve always felt like I get lost in a group of people talking and struggle to “tune in” on a single voice when having a conversation, but having not lived in someone else’s head I don’t know whether that’s just the same for everyone!

And with special interests, I do develop strong interests in singular topics/activities which often persist for months at a time. But they’re not really all-encompassing, so I’m not sure whether they “count” or not?

My head has been all over the place since the diagnosis and I don’t know what to believe any more. I took the decision to tell one of my oldest friends about the diagnosis the other day, and even as I was explaining it to him I felt like I was still having to convince myself of what I was saying. For what it’s worth he was really supportive, but I’m just really struggling with things at the moment. 

I feel like I’ve rambled on forever. I started off writing this post with the intention of asking whether anyone had received a diagnosis from Psychiatry UK and subsequently got a second opinion which went the other way? I’m not even sure what that would achieve at this point - I’m just so confused. 

Sorry everyone, this just feels ridiculously self indulgent to even be asking about. Just a bit lost about what to do next. 

Parents

  • This is exactly how I feel and I got the same score as you in the aq50. I was diagnosed autistic through psychiatry uk but he said I have combined adhd which makes it harder to notice because each condition can hide parts of the other one - perhaps it’s worth looking into adhd too? I’ve been put forward for another assessment for adhd.

    The thing that’s brought about the biggest anxiety for me after assessment is that he said I was on the threshold for ASD and asked me if i wanted him to just put ‘autistic traits’ and then confirm ASD diagnosis later. He said if I was diagnosed adhd and took meds more of the ASD traits would come out. i didn’t know what to say and just really wanted him to confirm yes or no because I found it too overwhelming to process. I also can’t cope with ambiguity which brings out so much anxiety in me. Because I was indecisive he just said he was confident enough to confirm a diagnosis but now I’m wishing I’d held off. I now have so much anxiety thinking I’m a phoney and researching endless articles and forums to check I’ve not made things up. Although I’m an extreme introvert I can actually be very good in social settings and make eye contact with people I trust. I’m also more chaotic than routined. The main areas I struggle with are unexpected changes, processing decisions, sound sensitivity and executive function.

    I‘m hoping when I get an adhd assessment it might clear some things up for me as I definitely have a lot of those traits. 

  • in reply to Elise
    Elise said:
    perhaps it’s worth looking into adhd too? I’ve been put forward for another assessment for adhd.

    Thanks for your reply. My assessor said there were some potential indicators for ADHD, so asked me to complete another questionnaire which focused on those areas. I didn’t meet the threshold for ADHD (and to be fair I didn’t really identify with any of the attributes described) so it wasn’t taken any further. 

    I hope once you get your ADHD assessment sorted it will help you out a bit more. 

Reply
  • in reply to Elise
    Elise said:
    perhaps it’s worth looking into adhd too? I’ve been put forward for another assessment for adhd.

    Thanks for your reply. My assessor said there were some potential indicators for ADHD, so asked me to complete another questionnaire which focused on those areas. I didn’t meet the threshold for ADHD (and to be fair I didn’t really identify with any of the attributes described) so it wasn’t taken any further. 

    I hope once you get your ADHD assessment sorted it will help you out a bit more. 

Children
  • in reply to rustyb

    Thank you. I really hope you find peace with your diagnosis too. At the end of the day there has to be something significant enough there to be assessed in the first place. The important thing is that it enables us to put strategies in place that are more likely to improve our difficulties and access support.