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.

What do you think?

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