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Adult misdiagnosis

Greendad

I’m a 40 something man and was diagnosed with ASD yesterday. It was a bit of a shock. Both of my kids were diagnosed with ASD a few years ago: my son is 16, daughter 12. Their traits are quite different as is normal between boys and girls. I never suspected that I could be on the spectrum too. I went to my GP in November because I was struggling with some things that I know my son also finds hard. I wasn’t looking to be diagnosed but they were impacting my parenting and my relationship with my girlfriend and she had been suggesting I sought help. I put it off for months. 


The MH specialist gave me questionnaires for autism and adhd and it was the latter that resonated more, especially the inattentive type. I went back to see the specialist in December. He said he suspected adhd but would send me for an asd assessment too but it would take longer. 

I’m close to my mum and brother but there was no way I could ask them to complete questionnaires for me. I know they would be very dismissive of me being assessed and I’m sure they wouldn’t answer accurately. I dont have any friends that knew me before aged 12.

My nephew (brother’s son) has asd and adhd. My cousin (mum’s neice) has recently been diagnosed with adhd, and her son has asd, which suggests that genetically it’s on my side of the family not my children’s mum.

 I was given an adhd assessment date for March and surprisingly an asd assessment in February. I was sure that I would be told I didn’t have asd but not sure about adhd. 

I wasn’t sure about asking the one friend I still have who knew me aged 12 but last week I did. He was very surprised to hear I was being assessed saying that he never would have suspected it. He agreed to complete a questionnaire, but I don’t know what he said on it.

I had my assessment yesterday and it felt like the psychiatrist had already made his mind up before the interview. The assessment only lasted one hour and he told me I have higher functioning asd.

My head is a mess now. I find it incredibly hard to believe that I have ASD. I don’t want to undermine my children’s’ diagnoses. I can’t talk to my mum or brother about it. I’ve mentioned it to another friend who I’ve know since I was 19. He was surprised too. 

Should I get a second opinion? I don’t know what to do. I’ve always been very anxious, and socially anxious, and I wonder whether that would be a more accurate diagnosis. 

Parents

  • What you describe is imposter syndrome a kind of denial. It is a kind of internalised ableism.

    As someone who was diagnosed in their early fifties I can relate to your feelings that you have gotten by before now. So what has changed, you are still the same person as before but now you will be able to understand yourself (eventually). Be kind to yourself you only different not broken.

    Are you in the uk as the timelines do not fit with the waiting list times here.

Reply

  • What you describe is imposter syndrome a kind of denial. It is a kind of internalised ableism.

    As someone who was diagnosed in their early fifties I can relate to your feelings that you have gotten by before now. So what has changed, you are still the same person as before but now you will be able to understand yourself (eventually). Be kind to yourself you only different not broken.

    Are you in the uk as the timelines do not fit with the waiting list times here.

Children
  • in reply to Mr T

    I read a number of authorities have frozen referrals at the moment waiting as they've used up the budget for this year, will be reset on April. So perhaps there are more places available at the moment, hence the short wait time.

    1hr seems quick. But is it possible to tell in that time for someone who is clear cut? Probably, if there are good forms with supporting information. They might also be more inclined to be positive given a confirmed family link.

    Doubt is common. Imposter syndrome is there because you can do stuff. But it is spiky, it also varies over time and stress. Also being older, you may have arranged your life to hide the challenges, with lots of routines, avoiding novelty, limited social.groups, etc. It makes you think you are ok. The closer you are to burnout the more obvious the traits become. Maybe up already arrived at most of the accommodations independently, I have.

    It takes months or years to fully accept. The hard part is thinking no matter how hard you tried you were never going to quite be the same, that you have been at a disadvantage, and then thinking back over your whole life.

    The main challenge is trying to figure out how you are different, when you are looking out from the inside.

    You will spend ages, then come to realise not much is wrong. But you will have more confidence because you know yourself.

  • in reply to Mr T

    Thank you. Yes I’ve read about how it can feel like imposter syndrome. I am in the uk. I was amazed at how quickly the appointment came. The MH specialist said it would take ages.  He referred me to Psychiatry UK in December.  The forms came in January and I completed them quite quickly. A day later I was able to choose an appointment on the portal, there were a huge amount of psychiatrists to choose from and many had availability a week or so later. I choose one who said he had autism and adhd in his bio.  The assessment only took an hour. It didn’t feel as in depth as I suspected. It also felt like he’d made his mind up before speaking to me. 

    It makes sense in some respects but it also feels like it doesn’t fit in some ways. I also worry that I’m undermining the diagnoses of my children.