The Generations That The Autism Diagnosis Forgot

Yesterday I was speaking to a really nice lad at my local Tesco’s. A young-ish man, around my age. I regularly see him at the checkout when I’m buying dinner for the evening. I had my son with me that day, and Alex was trying to choose his favourite brand of chocolate from the checkout counter. The young man looked up at me and he asked, “Autistic?” and I recoiled in response. “How did you know?” I asked him in complete bewilderment. He went on to explain how his son is autistic and he can identify other kids that share the same traits. It was then that I had the moment of clarity on how he does it, I’m like this too — I can recognise it in other people, yet perhaps I’m not that upfront about it.

That whole scenario led me onto a further series of questioning, “are you, yourself autistic? I’ve found that in my family it’s hereditary. Passed down through the males of the family” He looked up in wonder for a moment and then said, “nah, or at least not that we’ve discovered anyway.” Meaning that he hadn’t taken that line of enquiry just yet. His son is younger than mine so perhaps it will come soon as it did with us.

I remember at my last place of work the CEO was wondering if he could get the funding for tablets to work with adults with autism. Since I was the only computer guy in the building he had tasked me with the opportunity of designing a project that will help revolve around autism and iPads. It made me nervous because I had lots and lots of experience with tablets yet little to no experience with autism, or at least so I thought. I remember the first line I wrote as the starting of the bid to get funding,

“It must be hard being autistic”

I remember after writing this I was pulled away from it super quickly and the project being put on the back burner for a point when I was better ready to approach this subject. Personally I think I was given this because there was a high suspicion of my autism in the ranks and it was only a matter of time before I realised it myself. That’s why I was told to come back to it later. Sadly the project never materialised, our team was shrunk to three people and we were eventually disbanded as our group funding died a horrible death. The only reason I was still there was because I had a dribble of money in my pot. There was no favouritism there whatsoever.

It’s not hard being autistic though. If you’re high functioning like me then it’s just part of life. I feel no different than anyone else does. I’m just.. me. It took a while for me to realise that. Autism is how I feel inside. It’s not necessary something I can understand by looking at it objectively, I have to look at it through my own world-view; how I feel, and think, and get around, and how it compares to other people. I had to ask around, I had to ask my wife, friends, and family. I asked lots of questions. And sometimes I doubt myself. Sometimes I wonder if I really am high functioning or am I just being a hypochondriac? Attaching everything I do and feel to something else more sinister. It doesn’t help either when people tell me that I couldn’t be autistic because of what I’ve achieved, or how I put my thoughts so eloquently down on paper, or how I traverse through the interdisciplinary of communication with such ease. How would they know though? They don’t know how I feel inside. It’s not as if they can hear my thoughts.

It’s my opinion that a lot of people were missed in my day and beyond. We used to mock one of my friends for the insane temper tantrums he had. We would laugh as he jumped up and down and screamed at the world because it wasn’t fair. No-one could understand back then that he was melting down because his subjective world view and actual reality were clashing. Normal kids would take that in their stride, but he would climb the walls. We used to take full advantage of that. If we knew more about autism back then perhaps we would have been kinder to him. The kids in Alex’s class are very supportive towards him. I wonder if we would have been like that too?

I was pegged as a weird kid too. Luckily I had a face that fitted and I was able to attach myself to a stronger group of friends. I was able to hide amongst the fear of what wronging my group of friends would befall others were they to try. In that group of friends I was laughed at, called the brainy kid with zero common sense, but it was a small price to pay for what could have happened to me were I not in such a well revered group of people.

It all came to light when I had my son. It was like the missing link I had been looking for to piece my entire life together. I had been searching for years for answers as to why I did some things but not others. I had mentored and taught autistic adults for years but I had never put two and two together. It always makes me laugh when I think back to the autistic people I have mentored, and noting in them some distinct behaviours that were relevant to how I live my life but never connecting the dots fully. I would always be amazed and perplexed at how my mentee’s were similar to me yet never actually understanding that it could be because I was autistic too.

We were all missed at my generation and beyond. A person had to be severely withdrawn, have massive communication problems, and perhaps even abuse at home to be considered for some special treatment when I was younger — and the rep that special ed had back then, it wasn’t something that was worn like a special badge of honour, or a prestigious trophy. No, special ed was like admitting defeat. Perhaps this was the ignorance of my age. I can remember going to school and the jokes that were passed two and fro about who rode the special bus to school today.

Turns out a lot of my friends looking back are on the spectrum. I’ve already identified at least four of them. Not at school of course, we chose our friends in High School as a matter of popularity and conquest rather than who we liked and disliked. I found that those we kicked around with at school were entirely different from those that we associated with at home. Most of my friends at home are on the spectrum. I try and bring this up with them today; those of them that I am still in contact with. There’s a great many of us, all plodding through life undiagnosed, wondering why people are so strange and that we are a bit weird and differ from the norms of society. I’ll let you into a secret! It’s not you, it’s them! A wise person once said:

“Normal is for people without any courage”

Let that sink in!

I seem to connect best with people on the spectrum, strange but true!

Published on Raymondspeaks.com