Autism: My Late Diagnosis Experience
A lot of people seem to think that receiving an autism diagnosis is simple, as easy as going into a doctor’s surgery, saying you think you’re autistic, and receiving a piece of paper which confirms it there and then. Although my experience of receiving a diagnosis wouldn’t necessarily be considered ‘the norm’, I’ve never heard of it being this easy for anyone.
The other day, 26th of January, marked two years since I was officially rushed through the diagnostic process on a boat of cancellations to receive a diagnosis in September of that year. That’s even quicker than I remember it being, but the process makes it seem like it a lot longer.
To be fair, suspicions about me being autistic didn’t even start here. The first time someone proposed that I might be autistic was when I was twelve, from my mum, after she attended a Tony Atwood talk. At the time I didn’t take it very seriously, but after watching a talk he did after my diagnosis, I can see why my mum thought what she did. A lot of what he said sounded like he was describing me exactly!
Like many people who receive a late diagnosis, my mental health has suffered since I was young. I haven’t mentioned it much on this blog before, but I spent between the ages of thirteen and seventeen in and out of mental health services, eventually ending up in a school for emotional needs when I could no longer cope in a mainstream environment.
Despite the involvement of mental health professionals, no one seemed to pick up on the fact that I was autistic until I was sixteen. Before then, my mum had mentioned it to professionals as a possibility, but everyone was quick to brush the comment off in the hope that whatever was ‘wrong’ with me was fixable. Even the school I went to said it was a highly unlikely possibility.
At sixteen, my mental health state was at its worst, and with all other suggestions exhausted, mental health professionals finally decided going down the autism route was beneficial. In a meeting where this was put into motion, my therapist’s line manager asked if I was autistic five minutes into my mum describing things about me.
Two months later, I was officially put onto the waiting list, told they’d get me through the system as quickly as possible because I was due to start college eight months later, and they wanted me to be diagnosed by then.
The first part of the official process consisted of questionnaires which were sent to my mum and the school to fill in, in order to get an idea of the traits I showed in my everyday life.
In second part of this four part process was a hospital appointment to rule out any other causes of my behaviour. For this appointment I had to take a parent so they could talk about my early life, and any genetic history.
The third part was so casual I almost completely forgot about it. In this, a woman visited my house to answer any questions my mum and I had about the possible diagnosis I had ahead of me, as well as to determine how I acted in an environment I was comfortable in.
The fourth part of this process was by far the longest, taking over three hours and leaving me exhausted by the time it was over. In this appointment, my mum was taken to another room to be asked a number of questions, while I stayed in the room we had been in to begin with to answer questions and complete activities obviously created for people younger than myself.
This process took the best part of three hours, after which my mum and I were left in the room I was in while the other three professionals went off to discuss the results. It was explained to us before they left that I may have to return for another appointment if they couldn’t come to a conclusion there and then, but thankfully this wasn’t needed.
Around half an hour later, the professionals came back into the room and I received my official diagnosis: Autism Spectrum Condition (ASC). One of the professionals in the room told me they were surprised it took so long to get a diagnosis because I showed a lot of classic signs.
I left that office scared of the journey ahead of me, but relieved that there was a reason to why I felt so left out surrounded by others my age.
So there’s the story of how I finally received my autism diagnosis. If you have any further questions about anything involved within the process, or want to compare this experience to your own in the comments below, please do! I’d love to start a conversation about this.
Thanks for reading, and until next time,