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Autism diagnosis and the change it may have

Autismman

Hello there, I am new to this forum, really just posting out there to get some different opinions and ideas on what I am experiencing on a day to day basis. I’m a 37 year old male, left secondary school in year 7 due to bullying and not had any real education since. It wasn’t all the bullying that made me come to the decision that me and school were incompatible but it went a long way in that choice, I refused to go back. I was put on anti depressants ect but every time I tried to attend the school I would freak and withdraw from those trying to help. Anyway, that’s the rough background but in my adult life up until the last few years I never considered myself autistic until I read about it. I’m very social avoidant, dislike change unless I decide to, have a strong dislike for people making plans that involve me because I probably don’t want to go, avoid eye contact, that’s way too personal. I thrive on routine because it makes me feel safe like nothing bad will happen and it makes me feel good about myself also because I can repeat those good days where it’s just routine. I’m told I’m also very righteous? I mean I did want to be Batman of that helps but people said it wouldn’t really be possible which kinda made me have to grow up a bit. I suffer from anxiety and depression pretty much daily, I mean it’s always there really, no cure. Even at my work which is in an office environment I feel seriously overwhelmed, I’ve been there almost 20 years but my colleagues are still strangers to me and I’m almost frozen to my chair at times thinking that if I don’t put 110% in I’m gonna be looked down upon or looked at badly even though I know I work hard. I think I will seek out a diagnosis . Thank you for reading and look forward to the replies, 

Parents

  • I was 36 when I made the decision to pursue a diagnosis myself. I was and mostly still am dealing with massive burnout from years of what is known as 'masking' - basically pretending to be 'normal' or hiding the more quirky elements of my personality in order to try and fit in.

    This for me was the big motivator. I knew that something had to be causing the massive levels of fatigue and drain that I felt. So, I did the AQ-50 and scored 48/50. That to me was pretty much - yeah I should speak to a GP. The GP made me do the AQ-10, I got 9/10 on that so they referred me. Through right to choose I was assessed and got the diagnosis on 31st of December 2024 at the age of 38. 

    I tell you this story to say that your story sounds familiar to mine pre-burnout. Also to explain the reason I chose to get a diagnosis. I wanted to know what was behind the not fitting in and having to mask. Having done the AQ-50, RAADS-R, and CAT-Q tests over on Embrace Autism website seem to have helped provide a good basis for the referral. They actually also gave me some insight into how I saw myself. They ask some pretty deep questions that if I thought about helped me to identify some of my own struggles. Perhaps they might help you too.

    I would highlight though that the process is kinda drawn out though. I had to badger my GP at every early stage, and then had to complain when the Countess of Chester Hospital kicked back my referral after about 8 months. I used the NHS Right to Choose option (in August of 2023) after that which sent me to Psychiatry UK. They sent over some questionnaires, e-mailed me regularly just to tell me that I was still on the waiting list, and then after about 16 months I finally got my assessment with a psychiatrist. So, start to finish the process took me around two-years to get the diagnosis. I am currently badgering my GP again because I want some follow-up from them. 

    All this to say, aside from the great info Bunny and Overwhelmed have shared, good luck and I hope sharing the process might be of some use in seeing what might lie ahead for you.

Reply

  • I was 36 when I made the decision to pursue a diagnosis myself. I was and mostly still am dealing with massive burnout from years of what is known as 'masking' - basically pretending to be 'normal' or hiding the more quirky elements of my personality in order to try and fit in.

    This for me was the big motivator. I knew that something had to be causing the massive levels of fatigue and drain that I felt. So, I did the AQ-50 and scored 48/50. That to me was pretty much - yeah I should speak to a GP. The GP made me do the AQ-10, I got 9/10 on that so they referred me. Through right to choose I was assessed and got the diagnosis on 31st of December 2024 at the age of 38. 

    I tell you this story to say that your story sounds familiar to mine pre-burnout. Also to explain the reason I chose to get a diagnosis. I wanted to know what was behind the not fitting in and having to mask. Having done the AQ-50, RAADS-R, and CAT-Q tests over on Embrace Autism website seem to have helped provide a good basis for the referral. They actually also gave me some insight into how I saw myself. They ask some pretty deep questions that if I thought about helped me to identify some of my own struggles. Perhaps they might help you too.

    I would highlight though that the process is kinda drawn out though. I had to badger my GP at every early stage, and then had to complain when the Countess of Chester Hospital kicked back my referral after about 8 months. I used the NHS Right to Choose option (in August of 2023) after that which sent me to Psychiatry UK. They sent over some questionnaires, e-mailed me regularly just to tell me that I was still on the waiting list, and then after about 16 months I finally got my assessment with a psychiatrist. So, start to finish the process took me around two-years to get the diagnosis. I am currently badgering my GP again because I want some follow-up from them. 

    All this to say, aside from the great info Bunny and Overwhelmed have shared, good luck and I hope sharing the process might be of some use in seeing what might lie ahead for you.

Children
  • in reply to martintheactor

    Thank you so much for this reply, and I am really pleased that it worked out for you in the end despite the excessive time waiting which is completely unfair anyway, If professionals know what autism is it shouldn’t take too long for people to get diagnosed but sadly it does. Many members of my family are diagnosed autistic or going through similar processes at you mention In detail above. My family and friends, friends of friends have pointed out that I may be autistic mostly due to my uncompromising views on the world and thinking I am always right but the major challenge I face is finding people interesting, you know getting positive feelings from personal interaction with perspective new friends. I really dislike clothes tags (it’s like having a needle stuck into my neck) same thing with certain clothes and I am uncomfortable to be bare foot, if I am I tiptoe without noticing sometimes. Sorry if I’m going on but my mind is a little blown as I feel I’ve come to a sudden shocking realisation and things would be crystal with a diagnosis, thanks again!