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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

  • I can do small talk, I do not particularly enjoy it, but I can do it. I make eye contact, but I do it consciously and time it. I have sat on committees considering important matters in my work. I have been on interview panels for Biotech company jobs. I am very good at facial recognition and reading expressions. However, I still believe my autism diagnosis because it is the best fit for how I am. If it is taken away then I am back thinking that my problems and limitations are purely personal to me, and that I am, in some ways, just a 'defective human being'. I cannot express the joy I felt on finding that very many autistic people remove irritating labels from clothing, when I thought I was the only person in the world to do so. I was happy to have found 'my people'.

  • in reply to Martin
    Martin said:
    I cannot express the joy I felt on finding that very many autistic people remove irritating labels from clothing, when I thought I was the only person in the world to do so.

    This is one of the things that really makes me question the diagnosis, because I hear this from so many autistic people but I’m not even remotely bothered by clothing labels or textures.

    I have a weird thing where I can’t bear the idea of anything metallic in my mouth (there was a chewing gum advert a few years ago where someone was holding keys in his teeth and it made me feel sick every time it was on), but the clothing thing just doesn’t resonate with me at all. 

Reply
  • in reply to Martin
    Martin said:
    I cannot express the joy I felt on finding that very many autistic people remove irritating labels from clothing, when I thought I was the only person in the world to do so.

    This is one of the things that really makes me question the diagnosis, because I hear this from so many autistic people but I’m not even remotely bothered by clothing labels or textures.

    I have a weird thing where I can’t bear the idea of anything metallic in my mouth (there was a chewing gum advert a few years ago where someone was holding keys in his teeth and it made me feel sick every time it was on), but the clothing thing just doesn’t resonate with me at all. 

Children
  • in reply to rustyb

    My sensory problems are somewhat texture-focused, that and, smell and sound, very much less so on vision or taste. I can eat most things, with no issues. However, touching nylon fabric has a visceral revulsion for me. I just want to curl up and die. Sensory triggers vary greatly between autistics.