My ASD Diagnosis Journey as an Adult

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
  • Wow all thats so quick I went to GP got the referral straight away an appointment within around 6 weeks with an access clinician who then took her findings to their MDT meeting and it was decided to put me forward to their affective disorder team for autism assessment, now here's the killer she said the waiting times are around 7 years!!!(Tees, Esk and Wear Valley Trust), like many people I've always known I was different but at 51 and only recently finding out I'm autistic I'm currently reflecting on my life and being autistic it makes sense now.

    Does anyone know if there's a way to find out diagnosis waiting time in different areas and do I have the right to transfer to other trusts

  • 7 years is crazy and makes me think they are just fobbing you off Persevere Don't give up.

    I've had a look on the TEWV website and the information on there about diagnosis is extremely vague https://www.tewv.nhs.uk/about/performance/autism-framework/ The link they provide about the diagnostic assessment just goes to a page about children and young people, nothing about adults.

    It seems that it is somewhat of a postcode lottery but I would question your GP again about what the process is in your specific area. I think you should be able to use the 'right to choose' procedure to be referred to an alternative diagnostic centre with shorter waiting times. However I have no personal experience of doing so.

  • I don't think they are as the clinician I saw wants me to pick 2 or 3 aspects of my autism to work on in the meantime and to keep me engaged in the service. TEWV are really bad, you just have to dig a bit they make the news quite regularly IIRC Panorama did an episode undercover at one of their residential wards and there where staff hitting patients etc they also didnt do great with the cqc

    https://www.cqc.org.uk/news/releases/cqc-tells-tees-esk-wear-valleys-nhs-foundation-trust-make-urgent-improvements

    you would think if would be easier to find out the waiting times or trusts, nice idea about returning to my GP thanks for that

Reply Children
  • I went with a list of my autistic traits and she said pick 2 or 3 to work on I dont think they'll keep me involved for 7 years like you said it will me maybe 6 sessions and I think it will be the treatable things like anxiety or depression, Ive since found out they've joined a new CCG which is now called an integrated care partnership so theyre part of NE & Cumbria ICP its soooo confusing but basically its suppose to be joined up thinking and using the resources of the whole area to solve the problem

  • Autism isn't something to be 'worked on' or treated. I assume they mean the types of mental health issues that commonly occur in autistic people, such as anxiety. I'm curious if you have managed to access some sort of support that I didn't know existed. Are they really planning to keep you engaged in the service for as long as you are on their waiting list?

    Most of us fail to get any support at all from mental health services. There are extremely long waiting lists for even very basic CBT courses, which do not help anyway. Any treatment offered is usually for a maximum of 6 weeks and then you'll need another referral. Repeated referrals from my GP have been declined by the MH services and/or the CCG. I've now given up asking, as I can't face any more rejections and don't trust them not to make my anxiety worse.

    Unless you are lucky enough to be able to access any specialist support in your area then you will likely find that most MH staff have very little training on or knowledge of autism. Their interventions and approaches can be at best unhelpful and at worst harmful to autistic people. Be careful to understand what it is they are planning to do for you, especially as you have seen the evidence of how bad your local service are.

    With regards to the process of using the 'right to choose' system, it may help if you start a separate discussion about it on here. It's more likely to be seen by someone who has experience of that.