I had a plan. I was going to write the process of going for autism assessment as an adult as it happened. This fell apart within the first month, when I received an extremely vague referral acceptance letter from the local service, which started a long process of anxiety and uncertainty.
From initial referral to diagnosis, my process took 14 months. This varies from county to county depending on waiting lists and local services. It will take at least three months, with an unknown upper limit. This is not particularly helpful.
Wherever you are in England (and possibly the UK, but the services vary and my experience is in England), the first step to getting an adult autism assessment from the NHS is to get a GP referral. Alternately, you can try a private route.
Book an appointment specifically for the purpose of talking about a referral, and prepare a statement in advance. If you have come to the point of looking to go through assessment, you have probably read a lot about the subject to suspect that you are on the autistic spectrum. The most useful thing to take to your GP is an example of how you think you fit the three areas of the ‘triad of impairments’. To be honest, I just waffled and didn’t prepare at all, but it would have been helpful.
The next step is to wait, and wait, and wait… Actually it was only two weeks since seeing my GP that I got a letter from the local autism service accepting the referral. If you have heard nothing with a month, you do need to chase.
The rest of the steps vary from county to county, and are very personal. It’s not possible for me to write about the process in detail because I am still processing much of it, and also I don’t actually want to share most of it because it it so personal.
However, here is a summary (with timescales) of the stages I went through:
Jan 2014 – GP referral
Feb 2014 – Referral acceptance letter
Aug 2014 – Pre-assessment letter, and form to complete
Sept 2014 – Pre-assessment interview in person (1 hour)
Oct 2014 – Pre-assessment questionnaires to complete (200+ questions)
Jan 2015 – Assessment day in person: 6.5 hours including interview, lunch, tests, interviewing informant (in my case, husband)
Mar 2015 – Assessment feedback in person incl diagnosis if any (1 hour)
In between those dates were many, many e-mails chasing up what was happening, asking for clarifications, sending further information (including from a parent) etc.
In some guides I’ve read, it states that diagnosis will be given at the end of an assessment. With the service I was assessed with (ADRC Southampton), they have a meeting once all evidence is collected for a wider team to confirm whether the correct diagnosis has been made. They do not give any hints of any diagnosis until the assessment feedback session.
I won’t lie, it was a stressful process. The full-day assessment was especially draining, but the uncertainty and waiting caused me huge anxiety. It affected my entire household. There were times I wished I’d never started but I’m glad I went through the process and have the diagnosis.