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My ASD Diagnosis Journey as an Adult

Dino

Hi all.

I promised to write this a while ago to try and help anyone who might be stuck in the middle of the process of an ASD assessment, and a few people were keen to understand the process. I found there were long periods of silence between contacts and appointments, and it is easy to find yourself feeling forgotten or lost in the system.

I was originally planning to do this sooner, but I thought I best to see the process out to a point so that I could paint the whole picture rather than pieces as it might make things more confusing.

I am 37 years old, so this would be considered quite a late diagnosis – however I am aware there are a lot of people in my situation, and I found out there are large differences in the timeline in different parts of the country. I live in the Greater Manchester area and attended my assessment in the Wigan borough.

I have already covered some of my story in a previous post, but to keep it all in one place I have included it again. I have always seen myself as different to my peers in some way, and I had difficulty socialising with others; however, once I did make a friend or two, I tended to stick with them as they become comfortable to be around, so that helped. I met my wife about 5 years ago and as soon as we became involved in a relationship, she started to mention things to me about me potentially having some neurodivergent tendencies. She works with learning difficulties and ASD adults, so has a good idea what to look for. After about a year of pestering me to contact my GP I decided to do it and then the below timeline started:

29th March 2021 - Referral request to my GP

I was asked to answer some initial ‘screening’ questions:

1. Do you have difficulties socialising / interacting with others?
2. Do you find it difficult to adapt to sudden changes / routine in your daily life?
3. Do you struggle with concentrating at work or tasks?

At this point my referral was accepted and I was advised I would referred to a specialist department and that it might be a lengthy wait.

20th April 2021 – Received a letter from the GM Mental Health service advising me that a referral had been received and I was placed onto a waiting list.

23rd May 2022 – Received a letter stating that I was at the top of the list for an autism assessment.

26th May 2022 – Received a letter offering me a face to face assessment appointment on 9th June 2022.

9th June 2022 – Attended the autism assessment appointment, which was a 2 hour interview with an austism specialist and a psychologist and involved quite a lot of questions and a few simple games where my behaviour was assessed; it was nothing too daunting, so don't worry. I was asked for contact details for a close family member who could be interviewed to provide supporting evidence.

4th August 2022 – My mother had a telephone appointment with the autism lead and psychologist regarding my child hood behaviours etc.

10th August 2022 – I was contacted and advised that they had completed their assessment and arranged an online meeting on the 18th August 2022 to discuss the findings.

18th August 2022 – Attended an online meeting to discuss the findings of the assessment and to confirm that my full report would follow.

25th August 2022 – I was enrolled onto 4 online workshop sessions to advise and assist me with the diagnosis and offering support on dealing with that and day to day life in the future. After completing these there are up to 5 one to one sessions available with a specialist to assist and advise me on any personal issues or anything else I need support with.

I haven’t attended the workshops yet, but I don’t think that is relevant to this post anyway, so I decided now was a good time to make this post. I hope it offers some help or guidance to somebody and if anyone has any questions then please don’t be afraid to ask.

Dino

Parents

  • It is interesting to see how the process works in other areas. The difference which particularly struck me is the amount of post diagnosis support you are offered in your area. It is much more generous than the 2 support sessions I was offered.

    From my GP finally agreeing to make the referral (which in itself took 3 years but that's another story) it took just under 2 years for me to reach the top of the list. The assessment process took around 6 months. The written report took a further 4 months. The post diagnostic support sessions took place around 18 months after my diagnosis.

    Like you I had long periods of silence in between contacts and appointments. I found this particularly hard to cope with, as I like to know what is happening and what is going to happen.

    I would have benefited from a lot more post diagnostic support and much earlier in the process. I think the delays were partly due to Covid and also that there was a further waiting list for the post diagnostic support. During this time I was really struggling, without any support at all. I think the amount of post diagnostic support offered in your area should be the bare minimum in all areas. Like so many things it seems to be a postcode lottery.

    The process of going over past negative events, which had been well buried since childhood, was incredibly difficult. My initial relief at my diagnosis had been replaced by negative emotions, mainly anger, which I wasn't expecting. I was angry that autism had been repeatedly missed, despite so many clear signs and my severe lifelong anxiety. There was also a sense of loss at how differently things could have been if I had known earlier in my life and had support. 

    I am still trying to learn how to live as a successful autistic person, rather than a failing non autistic one.

  • in reply to Autonomistic
    Autonomistic said:

    The process of going over past negative events, which had been well buried since childhood, was incredibly difficult. My initial relief at my diagnosis had been replaced by negative emotions, mainly anger, which I wasn't expecting. I was angry that autism had been repeatedly missed, despite so many clear signs and my severe lifelong anxiety. There was also a sense of loss at how differently things could have been if I had known earlier in my life and had support. 

    I am still trying to learn how to live as a successful autistic person, rather than a failing non autistic one.

    Wow you've put into words exactly how I have been feeling these last 2 months since I discovered I was autistic.

    I only found out by accident!!!, I was trying to remember the name of the lady who did the Boddington adverts years ago, turns out its Melanie Sykes also on the google return was a few news stories one being that at 51 (My age) MS found out she was autistic, hmm thats a strange I thought so I read the story which in turn made me end up at the NHS symptoms page I have all the main symptoms and also all the other symptoms. At that point you could of knocked me down with a feather like probably many people my only dealings with autism where things like the rainman and the undateables etc never for 1 minute did I think I was autistic. Next I go onto loads and loads of online tests and every test said high autism make an appointment to see your GP.

    I beaten myself up since I was a teenager about my issues but everything makes sense now but if only I had been diagnosed earlier things could of been different instead of me eventually having a mental breakdown at work 18 years ago, since then I've not really worked and the couple that I have had have ended quickly due to what I now know is my autism, your last line I love and will now be my new mantra

  • in reply to Pete

    I haven't been on here that long myself, but it's amazing how many times I've read something and thought that is so like me I could have written that.

    Autism is sometimes referred to jokingly as wrong planet syndrome. I think that is so true. I've felt like an outsider my whole life and now I've finally found more of my own species on here.

    I found out by accident too. I happened to come across a book on Aspergers (as it was called then) and reading was like myself being described on the pages. It is good that there is more awareness now, with people in the public eye talking about their own experiences of being autistic.

    Like you I had a mental breakdown due to work in my early 30s. Looking back I now realise it was a period of severe autistic burnout. I've not really worked since either, aside from a few disastrous temporary jobs. The statistics for numbers of autistic people in employment are shocking.

Reply
  • in reply to Pete

    I haven't been on here that long myself, but it's amazing how many times I've read something and thought that is so like me I could have written that.

    Autism is sometimes referred to jokingly as wrong planet syndrome. I think that is so true. I've felt like an outsider my whole life and now I've finally found more of my own species on here.

    I found out by accident too. I happened to come across a book on Aspergers (as it was called then) and reading was like myself being described on the pages. It is good that there is more awareness now, with people in the public eye talking about their own experiences of being autistic.

    Like you I had a mental breakdown due to work in my early 30s. Looking back I now realise it was a period of severe autistic burnout. I've not really worked since either, aside from a few disastrous temporary jobs. The statistics for numbers of autistic people in employment are shocking.

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