Assessed and diagnosed today

Last week I was surprised to hear that I was to be NHS assessed today. I've been waiting for around 1 year and wasn't expecting to hear anything further until this time next year at the earliest, so it was a bit of a shock, but also great that it was finally happening.

I've suspected that I am autistic for around 18 months and have been advising people (friends, family, work) that I probably am autistic, but did feel a little uncomfortable as it had not been officially diagnosed. I mean, what if I had been saying that for all this time and then have a negative diagnosis.

I had done plenty of research into what to expect during the assessment.
There are many great posts on this forum that talk about both positive and negative experiences.
I was looking at the ADOS guide last night.

Monday morning came and I was awake much earlier than usual.
My anxiety was through the roof with worry about what was to occur in the coming hours (despite having done a lot of research).

10:00 and the assessor greets me and my wife in the waiting room.
First impressions were that she was very friendly and appeared to be much younger than I would have expected.
Apparently she tried to engage in some small talk whilst taking us to the assessment room - I had no idea of this, even when told later on.
The assessor had some background info on me as she had access to various reports that had been made on me by mental health support over the past 18 months.
The first hour was Q&A about me and my behaviours - the time flew by.

Quick 10 minute break and we back at it.
Some more general questions before moving onto the ADOS part - I had an idea of what was coming, but was a little uneasy about the nature of the activities as several people have said that they were demeaning, child like, etc.
First was the shapes - no problem. I even gave a commentary about what I was thinking, how it would be better if I had more of a certain colour, how I am putting them together, etc.
Next was the map - again, no problem. I have been to the US, so recounted some experiences of leisure and work related trips.
Then it was upon me.....THAT ACTIVITY (if you know, you know!). The assessor talked about the first couple of pages and then it was up to me for the rest of the book. No problem. I didn't tell a story, I simply observed and shared my observations - 1 of which the assessor had never noticed or considered before.
1 hour later the ADOS was finished.

A few more general questions and then the question came "Are you ready for your diagnosis?"
PAUSE, PAUSE some more - the reality, the journey, the expectation, the uncertainty.
It was almost as if my whole life past, present and future hinged on this moment.
Finally, yes I am ready...

"You are Autistic - there is no doubt"

WOW! So many emotions gushed from the floodgates being opened.
Should I laugh? Should I cry? Would laughing be appropriate? All 3 happened.
I took some minutes to just take in the enormity of what had just happened.

We spent the next 30 minutes of so discussing the decision, next step, etc.
Then it was time to say goodbye - I gave the assessor a big hug (was not sure whether that was appropriate behaviour, but fortunately it didn't seem to be a problem).

At the time and on reflection I did notice so nuances throughout the experience - not sure if they were intentional to see whether I noticed them or reacted to them, or just the way that it went. I won't mention any as I don't want to give too much away to anyone going through the process.

So that's it....I'm one of the gang!
A fully fledged member of Team ND!

It puts context to so many experiences in my life.
It answers so many questions.
Hopefully it will help me find peace with troubles in my head.

Parents Reply Children
  • Yes, I was told that there was a long waiting list and not to expect an assessment for approx 2 years or more., so it was a real surprise for me. I'm in my 50's and live in Buckinghamshire.

    I have been under the care of Mental Health support for more than 2 years (other issues) and probably first requested my GP to refer for assessment around 18 months ago. I received no help with the referral questions, so let it go for some time. I then picked it up with the Mental Health service, but the first support person was no help - my request was rejected. We then had a very good support worker who really did help with getting accepted for assessment.

    So, not sure if the referral was backdated to the original request to GP, but I doubt it very much.