My Journey to my Autism Diagnosis

On Tuesday, March 29th, 2022, I was diagnosed with an Autism Spectrum Disorder by a Psychologist working in our great NHS.  A diagnosis of autism doesn’t come easy.  There are currently no blood tests, urine dips, or imaging techniques that can detect autism.

My journey started in August 2021 when I was hospitalised with COVID for a period of around 10 days.  The consultant treating me asked me one morning if I’d ever been assessed for an autism diagnosis, which I hadn’t.  Here I was, a 44-year-old man, with a long professional career, being asked if I had been assessed for a condition that I thought only affected kids.

The consultant put in a referral to the local autism assessment service and gave me a questionnaire which I now know was the AQ10 – Autism Quotient 10.  It’s a screening tool to see if a full assessment is warranted.  Out of the 10 questions, I scored 9, which shows that the person taking the test is highly likely to be autistic.  I also had a questionnaire for my mum to complete.

Having completed these questionnaires, they were posted back to the assessment service, and I waited.  Eventually, I received a phone call from the doctor at the assessment service with some more questions, and told me she would need to speak with my mum about what I was like as a child.  I gave her my mum’s phone number and waited again.

The call to my mum was made in January of 2022.  I was not made aware of what had been discussed, and at the time of writing, I have not received the report from the doctor.  I now know this was called an ADI-R which is a structured interview and took 2 hours.

Following this, I was called into the assessment service for a face-to-face appointment to carry out an assessment named ADOS-2 module 4, the ADOS assessment for adults who are fluent speakers.

At this appointment, I performed several tasks in front of 2 psychologists who observed me very closely.  During these tasks, the doctor with me attempted to spark a conversation and I don’t know how I did but I’ve never been one for small talk, it’s a struggle to hold a conversation unless it’s about a subject I know about.

One of the tasks was to tell a story and the doctor handed me a picture book full of frogs that fly on lily pads.  All I could do with that was tell the doctor what was happening on each page and noted the very precise times on the left-hand pages which were blank except for the times.

Another of the tasks was to choose some items from a bag of toys and tell a story using them.  At the time I’d just had a horrible car accident that involved a large bull in the middle of a dark country road and just around a bend.  As I rounded the bend, doing no more than around 30-40mph, I came into contact with the bull and he wrote the car off.  According to the ambulance crew, I was lucky to get out of the car alive.  Back to the assessment, the items I chose were a toy car, a pair of glasses, and something else, a large thing, to represent the bull. I re-told the story of my crash.

After all of this, I went home and waited a couple of weeks for a results appointment, which confirmed what I had suspected since the consultant at the hospital had asked me about autism.

At present, I’m waiting for the report from the assessment service.  This diagnosis has made sense of so much of my life.  Behaviours, meltdowns and shutdowns, masking, and over-sharing, which I’ve always done.

So, I’m autistic.  I’m with the camp that say it’s not a disability and is instead the way our brains are wired which is different from neurotypical people.

Coming to Terms With my Autism Diagnosis

Just over 2 weeks ago I was diagnosed as being autistic. While this wasn’t a huge surprise it still came as a shock. It also explained a lot of things in my life, things that have happened and my reactions to them, things I’ve done and times when I’ve misunderstood what’s going on.

Now I find myself wondering if some incidents in the past have been autism related. For example at work I’ve found myself shouting at my manager twice. Frustration turned into anger and while I knew at the time what was going on, I was powerless to stop it. It was as if I was a spectator. It also wasn’t me. I’m one of the most placid, calm people I know. Of course when those incidents occurred I didn’t know I was autistic.

I hate small talk. Whether in written messages such as emails or instant messages or verbally, I am rubbish at it. I’m also useless at starting a conversation, even with people I know well.

I can’t do subtext. I take everything literally and a former partner had to explain when she was joking or being sarcastic about something. This has a large impact on my life because neurotypicals tend to speak in subtext most of the time, never directly saying what they mean.

Another thing I have issues with is knowing how I feel. This applies to both physical feelings such as hunger, thirst and types of pain as well as emotions. I now know this is an autism thing called Alexithymia. It’s not a diagnosis in itself, it’s more of a symptom. This leads to problems when seeing a physician and they ask what type of pain I’m in; I can’t answer because I simply don’t know.

With the emotion thing, I don’t know how to explain how I feel if someone asks, so I always give the stock answer that I’m ok, even when I’m not, but can’t explain how I am actually feeling.

Eye contact is a very common symptom of autism, and it’s something that I struggle with, when I’m talking with someone face to face I tend to look over one of their shoulders instead of making direct eye contact, which is way too intimate.

I also get very anxious about having to change a routine or an arrangement, for example I have a morning routine and if I get anything in the wrong order it upsets me and makes me ver anxious. If arrangements/plans are changed it causes anxiety. Finally for now, I am rude. Let me explain; I don’t know when to enter a conversation and am tactless, I say things as I see them rather than skirting around the way neurotypicals do.

These are just some of the issues I have and now I have a name and a reason for those. It’s reassuring to know there are a lot of people going through the same issues themselves.

I’ve come to terms with my diagnosis. It is what it is and it makes me, me. Sometimes it causes problems in life but, on the flip side, it also enables me to see things that others miss, to see things differently with a unique perspective. I spot and remember car registration plates and can instantly recall when and where I’ve seen a particular car previously. This isn’t something I “do” as such, it just kinda happens automatically, or autistically, if you will.

Now that I know the cause of so many problems I’ve had in the past, I can move forward with that knowledge and hopefully understand more about my life.

Autism is part of me. My brain is wired differently to the majority of people and that’s ok. I think. I’m only 2 weeks in, I’ll have to come back and revisit this in 2 years maybe.