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Routes to getting a diagnosis (UK)


What this site is not is a way to diagnose autism. There are lots of tools out there for that, which I’ll rummage through and link at some point. While I want to help support people with the same kinds of difficulties as me, I am not qualified to dish out any labels(!)

All that being said, I do want to say a little bit about routes to a diagnosis, in case sharing those experiences is helpful. In the UK, there are two main options: NHS and private.

There is also a third option: self-diagnosis. Lots of people are comfortable, having looked through information about autism, to self-diagnose and go from there.

I got a private diagnosis in the UK, and consider myself very lucky that I was able to do so. The waiting lists for NHS diagnoses are long (think years rather than months) which is extremely unfair. I'll say a bit about the two formal routes below.

NHS

  • Cost: this route is free.

  • How to do it: you need to first get a referral from your GP and from there would be referred to your local psychiatry trust (mine would have been my local hospital). There’s advice here about what to do to prepare at each stage.

  • What happens: as I’ve not been through it, I’m not going to say much more, but will update this if anyone is willing to share their story. (If you are, please sign up to the newsletter and I'll send you info on how to get involved!)

Private:

  • Cost: this route is not free... My diagnosis cost £1995 here and that was in the lower price range of what I found. I suspect it varies across the UK.

  • How to do it: you can find a place through any search engine, or searching "diagnosis" near your postcode on the NAS website here. I chose that place in particular because they specialise in diagnosing autistic women.

  • What happens: for me, the process first involved a lot of forms. They were about developmental history (some of which I asked my mum about), current difficulties, and why I thought a diagnosis would help. I also got statements from a close friend and from my therapist. The paperwork probably took a full day in total, spread out over a week or so. It was very overwhelming at times, given the breadth of what was covered. I also had to amend some of the forms to be in a spreadsheet instead of a word document because the format was too confusing for me to be able to process what I needed to do. I had the option for someone(s) to join me in the assessment but declined. The assessment was two hours over Zoom, as this was during the pandemic. We worked through the DISCO assessment, they told me their conclusions, and we then discussed a few particular difficulties (sensory stuff and what to do about my job).

In either case, it’s important to ask yourself: would having a diagnosis significantly impact my life? For me, I felt that the answer was yes, but that is not true for everyone. Given the cost and/or long wait for a diagnosis, it’s worth thinking through what best suits your needs.

Lauren x

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