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introducing myself

Miles

Hi 

I am new here. I don’t officially have an autism diagnosis, but I am pretty sure that I am, and I have been on a waiting list to get one for more than two years. I don’t know what difference it would make knowing that I am autistic or not. And part of me wouldn’t trust a negative diagnosis anyway. I feel like I am in a weird limbo of not knowing - well, I think I know.

I work with autistic people, and over the years, I have done quite a bit of training, and the more I find out about it, the more it seems to fit. Reading through some of the threads on this forum, I can definitely relate to much of it. 

I am in my early 50s, so it is very odd coming to terms with the idea of being autistic at this stage in my life.  It leaves me questioning much of what I thought I knew, and coming to understand some of the struggles that I have faced in my life through this new lens. I  have lived with anxiety and depression for a long time.  I also find that I have very limited energy, which can easily be depleted, especially in social situations or in overwhelming environments. There are many other things I could list: I find change very unsettling, I struggle to make friends, I have quite obsessive interests in very specific things, etc... 

 

Regards 

Miles

 

Parents

  • Hi and welcome to the community!

    In respect of preparing for your assessment, you might find it helpful to compare the traits that you've noticed with those detailed in these NAS resources, which explain the main signs / symptoms / characteristics of autism. They might also help you to identity and note down any additional things that you recognise in yourself:

    NAS - What is autism?

    NAS - Signs that a child or adult may be autistic

    There's also some further advice here, from the NAS's diagnosis hub, which has lots of other useful articles:

    NAS - What can I do while waiting for an autism assessment?

    Miles said:
    I have been on a waiting list to get one for more than two years

    I spent over two years on an NHS waiting list - and still likely had a lot longer to wait - before I was told, by my NHS psychiatrist, about a quicker way to get assessed.

    If, like me, you live in England, then you might like to consider asking your GP to re-refer you using the Right to Choose pathway (RTC). In England (only), this enables access to certain, approved, private autism assessment providers who typically have much shorter waiting lists than the NHS, but with the referral and assessment still fully funded by the NHS. 

    For example, Psychiatry UK's process is explained here. It involves preparing the required materials - an AQ-10 form and accompanying letter - ready for the GP when requesting re-referral:

    Psychiatry UK - Right to Choose Autism Assessments > How to apply

    The waiting times for RTC assessments can be affected by local NHS Integrated Care Board (ICB) budgets. As a general guideline, this particular provider is currently stating an expected waiting time of 5-6 months from GP referral:

    Psychiatry UK - Initial Assessment & Titration Waiting Times

    More information is available here:

    NAS - How to request an autism assessment

    There's a list of other RTC providers for autism at the bottom of this page, for example:

    NHS Sussex - NHS Right to Choose: for Autism and ADHD Assessment

  • in reply to Bunny

    Thanks bunny for your response. I am aware of the right to choose. I figured that as I have been waiting for such a long time it must be coming up fairly soon. Also I understand that the local nhs diagnosis is in person and more detailed, which I think I would prefer. But maybe I should reconsider. 

  • in reply to Miles

    You're welcome! 

    Miles said:
    I figured that as I have been waiting for such a long time it must be coming up fairly soon
    Miles said:
    But maybe I should reconsider. 

    Of course, it's very much up to you. My mental health was deteriorating during my waiting period. As much as it might have been nice to go through the NHS process, I knew that I couldn't wait for it.

    Although they couldn't / wouldn't give me an official NHS timing estimate at that point, I was warned to expect at least another year of waiting if I stayed on that list, and perhaps a lot longer.

    After switching to RTC, I was diagnosed within a few months. 18 months after my diagnosis, I discovered that I'd accidentally been left on the NHS list. I didn't find that out because I'd got the front of the queue - I'd just happened to contact that team for a different reason. So my wait would definitely have still been ongoing at that point.

    Perhaps the merits of each option are something you could discuss with your doctor, if you feel that would be helpful.

Reply
  • in reply to Miles

    You're welcome! 

    Miles said:
    I figured that as I have been waiting for such a long time it must be coming up fairly soon
    Miles said:
    But maybe I should reconsider. 

    Of course, it's very much up to you. My mental health was deteriorating during my waiting period. As much as it might have been nice to go through the NHS process, I knew that I couldn't wait for it.

    Although they couldn't / wouldn't give me an official NHS timing estimate at that point, I was warned to expect at least another year of waiting if I stayed on that list, and perhaps a lot longer.

    After switching to RTC, I was diagnosed within a few months. 18 months after my diagnosis, I discovered that I'd accidentally been left on the NHS list. I didn't find that out because I'd got the front of the queue - I'd just happened to contact that team for a different reason. So my wait would definitely have still been ongoing at that point.

    Perhaps the merits of each option are something you could discuss with your doctor, if you feel that would be helpful.

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