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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

  • At age 52 and having being diagnosed online in 2021 after being “encouraged” by family in Rural Ireland in 2019 to get a diagnosis here in Manchester U.K. as a single Irish gay male living alone here 20 years, I share much of these experiences, as my family are very much traditional Irish Catholics (and all that goes with it) - this is why, because of the (online) nature of the initial diagnosis, (proper) post-diagnostic support to establish (exact) level of autism and exact and (appropriate) adult supports are fully in place, including from autism charities - in my case, I was pressured to go back into the workplace too soon after diagnosis with no supports in place (despite redundancy after 17 years in Sept 2019 from supermarkets) into a hotel as kitchen Porter and public areas cleaning in 2021, until it all became too much last week, where myself and HR mutually agreed that I should quit after just over a year, from the new build hotel, as the management team had almost no training in disability issues and I’m more likely to find support if not working - my family in Ireland are putting me under a lot of pressure and are insisting that the only way to manage this condition is via a live-in carer (ideally priests or nuns) or long term placement to provide the ultra strict discipline they firmly believe and maintain is vital to manage this condition, without any reference to what my (non-relevant) views are (I’m not allowed to form, have nor especially not express any views nor opinions on anything, in line with traditional Irish Catholic Social Teaching) and am “shouted down” if I attempt to do so, as they believe in being “cruel to be kind” in “putting me in my place” “knocking me back a peg or ten” and “keeping me firmly in check” “for my own good” especially if coming directly from myself, even when repeating an official or professional opinion that they refuse to understand coming from myself directly, as they dont want to be seen agreeing “with the likes of me” on anything because I’m deemed to have “no cop on” and am “not right in the head” and that I need to be (made) to “cop myself on” because I did not get enough good hard good “clips across the ear” as a child for which they believe my autism is God’s Punishment for childhood disobedience 

Reply

  • At age 52 and having being diagnosed online in 2021 after being “encouraged” by family in Rural Ireland in 2019 to get a diagnosis here in Manchester U.K. as a single Irish gay male living alone here 20 years, I share much of these experiences, as my family are very much traditional Irish Catholics (and all that goes with it) - this is why, because of the (online) nature of the initial diagnosis, (proper) post-diagnostic support to establish (exact) level of autism and exact and (appropriate) adult supports are fully in place, including from autism charities - in my case, I was pressured to go back into the workplace too soon after diagnosis with no supports in place (despite redundancy after 17 years in Sept 2019 from supermarkets) into a hotel as kitchen Porter and public areas cleaning in 2021, until it all became too much last week, where myself and HR mutually agreed that I should quit after just over a year, from the new build hotel, as the management team had almost no training in disability issues and I’m more likely to find support if not working - my family in Ireland are putting me under a lot of pressure and are insisting that the only way to manage this condition is via a live-in carer (ideally priests or nuns) or long term placement to provide the ultra strict discipline they firmly believe and maintain is vital to manage this condition, without any reference to what my (non-relevant) views are (I’m not allowed to form, have nor especially not express any views nor opinions on anything, in line with traditional Irish Catholic Social Teaching) and am “shouted down” if I attempt to do so, as they believe in being “cruel to be kind” in “putting me in my place” “knocking me back a peg or ten” and “keeping me firmly in check” “for my own good” especially if coming directly from myself, even when repeating an official or professional opinion that they refuse to understand coming from myself directly, as they dont want to be seen agreeing “with the likes of me” on anything because I’m deemed to have “no cop on” and am “not right in the head” and that I need to be (made) to “cop myself on” because I did not get enough good hard good “clips across the ear” as a child for which they believe my autism is God’s Punishment for childhood disobedience 

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