It was now mid-February 2023. I pulled into the last parking space outside the clinic. It was a couple of minutes before my assessment was due to start, ideally, I would’ve been there earlier but I struggle leaving the house so was cutting it fine. I had checked the place out on Street View beforehand so knew where I was going and knew there was a ticket machine and that I had to pay for the parking. What I didn’t know was that the machine was out of order and there were several signs reiterating that a ticket was required and that fines would be due if a ticket wasn’t displayed. I spent a bit of time trying to think of a solution but couldn’t, so I entered the building. I went up to the desk and explained to the person there the situation with the parking and the faulty machine. “It’ll be alright” they said “don’t worry about it”.

It’s not that easy for me though. I guess it was an example of how my brain works, if there are rules, a process, procedure or set of instructions I follow them and so being told to just ignore them wasn’t something that came naturally. I sat on a chair in reception waiting to be called through to start the assessment and was wondering if I should be concentrating more on what was going to happen over the next 2-3 hours or if I should have written a note about the faulty ticket machine and put it in my windscreen? Before I had a chance to do either, I was called through and led to an office with the assessor and a student who was there as part of their course and also to take notes.

As an aside at this point, I want to mention dark glasses. In 2018, I got an infection in one of my eyes and after a course of treatment, any immediate danger was stopped but there have been some lasting issues. I was always quite sensitive to light but since the infection it has been a lot worse. I also get various visual disturbances – flashing lights, things that look like lightning trails – as well as problems with colour and contrast. Due to this, I wear dark glasses a lot, both inside and out. There has been an upside to this as I don’t like eye contact much and aren’t very good at it. I find it hard to know how much, for how long but know it’s something you’re meant to do as it helps to show you’re interested in the other person and what they are saying. My glasses have helped with this as it’s not so obvious (I think?) that I’m rubbish at it but the downside is that it’s not that socially acceptable to wear sunglasses inside. Some lights are worse than others so depending on the situation I try to balance my comfort and what is seem as normal but other times I don’t care and will just wear them.

Back in the clinic, I said to the assessor that I have an issue with my eyes so wear dark glasses and asked if it was ok. They said “yes” but of course at this point I was then worrying that they would think I was putting on an act or something but from looking into it afterwards, I think that’s a common theme through the whole process – second guessing yourself, imposter syndrome, worrying that you’re masking too much, worrying you’re not masking at all, etc

The assessment started off with us going over the answers from the forms I completed, she asked things about my childhood – some things I could remember, some things I couldn’t. I had talked to my mum a bit before the appointment to get her point of view on a few areas so it would be easier for me to fill in some blanks. We moved on through the years to high school, university and starting my first job, finishing up with other general adult things like meeting my wife and having kids. I thought it went ok, I answered everything as well as I could and thought there was nothing else I could do at that stage. I sat in the car for a little while after leaving the building (and was pleased I didn’t have a parking fine) to calm down a bit. It was more intense than I expected and I think after years of not properly acknowledging aspects of my personality, explaining that I do x because of y and I feel like this in these situations was difficult. I wasn’t used to revealing this stuff and then having people question me on it and ultimately critiquing it felt quite exposing. Before I left they said they have a weekly meeting where they discuss the current cases and then would write to me in the following few weeks with the next steps, whether it’s a “you’re not autistic” or “we’d like to investigate further” and would take it from there.

I’m a 43-year-old father of two living in the north of England. I work from home most of the time and I enjoy playing video games, climbing, and making things. I also happen to be autistic. Early in 2023, I was diagnosed with autism spectrum disorder (ASD). As I had been looking into autism and reading more about it, the diagnosis wasn’t a total shock and it actually gave me some comfort as it explained a lot of things about myself. The process and the diagnosis also caused some sadness and regret though as it meant thought more about how I can come across to others but I also think it has helped me to deal with it better too. In this blog, I want to talk about how I got diagnosed, how it is affecting my life and how I’m learning more about autism and myself as I deal with day to day things.

The process itself was interesting. It was via the NHS in the UK and I was expecting it to take a long, long time to complete. I had heard stories of people waiting years to be seen be the right people but I wanted to find out and so I initially spoke to my GP asking about an autism assessment in October 2022. He ran through some questions with me and said he would get some forms sent out for me to complete to move on to the next stage of the process. I was pleasantly surprised at how supportive he was as again, I had heard stories of people not even getting that far but I’m assuming the information I provided made him think I was worthy of being looked at by the professionals. I can’t remember lots about it but one thing he asked was “do you have problems with the texture of different foods?” or something like that and I replied “no, not really as I tend to always eat the same stuff”. “I’ll put ‘yes’ he replied.”

The next milestone was at the end of December 2022, I received a 40+ page set of forms from the autism service with questionnaires etc to complete. I received them on the 29th December and the letter said they wanted them back by the 28th December, it went on to say if they didn’t receive them by that date, they would assume the appointment was no longer required and would close the case. I did wonder if this was part of the test but after venting on an online forum I have been using for the last 20 years I made a slightly panicked phone call to the autism people and they said they would make a note to expect my forms and not to close my case which was a relief.

Towards the end of January I got a letter with an appointment for a face to face assessment that would be in February. When I saw the date in the letter, I wasn’t exactly sure what it was for because as I said earlier, my understanding was that waiting lists were years long and I was only 3 months into the process. As I read on, it was apparent this would be an appointment to actually diagnose me (or not). I did worry at this stage that such an important thing could be decided in a meeting lasting an hour or so with someone I hadn’t met before. What if I over or under compensated on the day? What if they thought I was making things up? What if they thought I was wasting their time?

I decided at this point that I would try not to worry about the diagnosis itself, I wanted answers to why I was the way I was, why I struggled with some things and excelled at others, why my tone was misread etc etc. My plan therefore was to go through the process and if I was autistic, fine, I would then explore more coping strategies and at least know why. If I wasn’t, it would be ruled out and I could look into what else it could be…