Exploring My Autism Whilst Being Diagnosed as an Adult

Since my diagnosis started, there has been a lot of stress and waiting, but I now receive specialized autism support at sixth form, which being in my last year is a lot to fit in. However it is crucial, and extraordinarily useful. I’ve also decided to defer attending university for a year. Having now applied for 2019, I have some time to look at options available to me and wait for my diagnosis to be complete.

This is all still very new to me in some ways, even if familiar in others. I need a lot of time just to adjust to this change and I do not have it. This should come as no surprise to anyone who has some knowledge of autism — change is extremely difficult, especially under pressure.

The most daunting thing at the moment is being supported with issues I’ve had for 18 years. It feels like I am an old computer being updated with the software of today. I’m grateful for the help, but we are having to go back to basics. I am aware of the issues and traits I have in life, but not yet at all familiar with the reasons, or the sometimes available solutions.

We started with the simple “what is autism?” and “what does it mean for me?” videos on the National Autistic Society’s (a U.K. autism charity) website to find this. I even got given some chocolate the other day. And now I’m learning of Asperger’s being removed from DSM-5, and some of the more current news surrounding autism today. I was also pleasantly introduced to the fact that Chris Packham, a British nature expert, is autistic, and we have been using his recent documentary on his Asperger’s diagnosis to explore my autism, both at home and in support at college. It also helped me because I have a love for nature documentaries, and was already familiar with him as a television personality.

I don’t quite know how to articulate how it feels to be learning something about yourself at this stage in life, when all the material you are looking at talks about children and parents and rarely anything about teenagers and adults. I started a website, Project Infinity U.K., to start creating resources to fill that void, but to put that into a vivid image: I can’t build a fort on top of a mountain I have not yet climbed.

I’m coping surprisingly well; my autism support assistance is great, but when I sit in my support sessions every Tuesday I can’t help but wonder what life would have been like if I had covered “Social Skills” (my current focus area) a decade or more ago. Would I be happier now? More capable? Would I have never developed such severe anxiety problems?

There are positives of course — as I am reminded in those Tuesday sessions, there are kind people dedicating themselves to bring acceptance and awareness about autism. I want to be one of them one day. And more importantly, there are the specialized staff who are here to guide us through what is an otherwise hard-to-navigate situation. There is the rich history of autism, which is how I found my favorite quote from Hans Asperger, which reminds me of the subjects I excelled in or enjoyed in my academic path:

“It seems for success in science or art, a dash of autism is required.”

Sometimes the questions I am expected to answer now reign in the positives. “Why was I not diagnosed sooner?” is a key one. I feel like asking the same question every day while I am sitting and waiting for diagnosis appointment date letters. In hindsight, I think the largest portion of the blame goes to the education system. For much of the school day, I retreated into my shell, as it was more endurable than trying to be like everyone else. I know teachers were aware of my differences and when I was struggling, because they used to discuss it with me. It was even discussed in parent-teacher meetings when my attendance inevitably dropped.

My answer to making the difficulties go away once the school didn’t was to pretend I was far away. Other times I did the opposite, and forced myself to be social — this usually ended up in me being loud and talking about my fixations. People were very rarely interested in listening. And still now I know there are some people from my life who would label me “quiet” and others who would label me “brash,” despite my lack of confidence, depending on what day of the week they saw me and what was currently going on in my mind. The song “Titanium” by David Guetta and Sia (and its music video) helped me for a long time, especially once being bullied became a growing issue.

Two different schools I attended made empty promises of referrals, re-referrals and so on. They even lost vital paperwork regarding my dyspraxia. Alas, I think that is the answer to why I was not diagnosed, along with the trust myself and my parents put in the system. The system which at some point failed me. And that’s why I want to move forward as fast as possible, to leave that past behind and make up for lost time.

That doesn’t make me less autistic, does it? Diagnosed now, or 10 years ago? The issues are the same, the causes, whatever they may be, are the same. They will always be with me, even if I try to suppress certain traits or quirks. And I feel like that is neglected to a degree by the world we live in. We are rarely exposed to the idea of autistic adults being exactly that — autistic. I am now expected to learn how to socialize and function in a world that wasn’t built for me. I do so willingly, but also wishing I didn’t have to just to get my voice heard.

Jacob's neurodiversity chart results.
Jacob’s neurodiversity chart results.

I now think it is entirely possible that we don’t see autism in a positive way as often as we should because autistic people feel pressured not to draw additional attention to it. I too am always hesitant. It can be hard to express the positives if the focus is on the negatives, and the negatives affect you. It is the same pressure I feel on the train to try to act “normal” — the pressure that means I am never relaxed unless totally on my own. Will that continue forever?

I honestly believe as much as some of my so called flaws might stem from being autistic, my positives do too.
My intellect, creativity, and individuality specifically. I by no means think I’m better than anyone else, but I also don’t think it would be correct to only measure my negatives when much of the world does that already. I don’t think non-autistics register the abilities of some autistics. There are doctors, scientists, authors, and artists, both today and in history, who benefited from being autistic. Many of whom have contributed to improving your life and the world around you, without asking for anything in return. A quick Google search will confirm the fact, and yet it so often goes unnoticed.

It is also very difficult to explore what the future holds for me as an autistic person, when the past plays a vital role in diagnosis and in explanations of traits. I am considered an adult now, despite still feeling like a child, and I have to remember that everyday some people are going to now expect me to act a certain way, or make excuses if I don’t. Unless I have the confidence to create my own path, there is the danger I will just slip into a false image of me, just as I did when I was at school. It is very easy to want to be a child again, my obsessions and love of Christmas, the penguins, the cartoons, and the video games; it seemed much more acceptable to focus my life on then. The truth is, I should be able to continue those things, regardless of my age. What I’m now looking at is creating a balance.

I have always wanted to wear the same clothes again and again, almost with a religious-like approach. To the point where my grandparents when I was a child used to wash my favorite outfit when I was visiting so I could keep wearing it. I didn’t register those things back then, I was too young, but now I realize things like that have never faded away and never will. Even as I sit writing this, I have recently ordered four identical fleeces, because I know that it is the most logical solution to my scenario. They will go into my wardrobe with my three identical pairs of jeans, to be worn time and time again. Why shouldn’t the childlike wonder I receive from twinkling lights carry on too in the same way? That’s why my bedroom now has multi-colored lights hanging from the ceiling.

I also know telling someone that exact fact will not be met with the greatest of responses by everyone. Especially once I explain those lights will not be coming down after Christmas. The word “weird” tends to crop up. Heck, I will likely never discuss it with anyone at college unless they’ve seen this article or know me well.

I do want to learn how to socialize, among other skills. I know deep down humans are social creatures by biology; I am enjoying learning that so it isn’t an issue. I am more focusing on how little credit we are given for going through it, and balancing it with the rest of our lives. To an extent, I am having to learn how not to be myself. But I want to be myself. I need the balance of implementing new coping strategies and skills, without sacrificing anything.

For example, I may want to meet someone one day, and I don’t want to necessarily keep up the charade that I can socialize well for the duration of a relationship. I want to be myself; I want to be somewhat dorky and socially inept, because it is far less draining. I feel like the only way to achieve that currently is to meet someone more like myself than a non-autistic.

I think it’s just hard to explore a label you would not otherwise give yourself. That isn’t to say I don’t think I’m autistic — of course I do — that’s why I pursued a diagnosis. But I did so knowing I would need it to get the help I need in the world, to be independent at university or in a career. I have always defined my traits, my quirkiness and my needs, as me. And I sometimes wish society as a whole did that too, and would still assist me and other autistics in living their lives. Imagine that? Helping people with their issues without putting them through tests, stress and stigma.

In several groups I’m in, I’ve seen stories of how autistic children and adults have been yelled at for “acting up,” being “inappropriate” or “too loud.” I cannot help but be angry. Some of us, myself included, cannot help being loud or having no filter.

Even though we on the spectrum are all different from one another, we are united by the fact we have needs different to the majority of the world. There are times where the 4 or 5-year-old who could not help but be loud will come out in the 14 or 25-year-old equivalent. If autistic people can stay strong through our diagnosis, through the issues we have every day, and through the reactions we receive, could non-autistics not take the time to be more tolerant?

As a writer, I do enjoy writing about being autistic. It is a way of venting all of the complex thoughts and feelings that may otherwise contribute to a meltdown. But it still sometimes feels like a taboo. Just because I don’t mind being different, being autistic, doesn’t mean everyone else is just as comfortable with it. And it shows.

But in ten years time, will things be better? I hope so. I want my diagnosis to be a sign of me helping myself, not me sending myself into a world that will harm me more. If I’ve done what I want to do — if I have published a fiction book — will the “About the Author” page say “Jacob is an autistic writer”? Will I have the confidence of being open about it to the world? These are the types of things I now have in my mind alongside everything else.

I often forget to eat and drink unless reminded. And yet I am now expected to forge a path into adulthood with what feels like the weight of the world on my shoulders. I’m exploring autism as I am diagnosed with it, and feel like the world has a long way to go. My help is paced, so I don’t get overloaded, but I know deep down the world is not paced. As soon as I leave my support room, I’m at risk of being overwhelmed again. Even in my happier times, that doesn’t go away, and I don’t know how best to deal with it.

It isn’t all bad, and I want to end on a positive. I am enjoying life at the moment as much as possible. There have been some hiccups, however, as I said in the introduction: I have sent off my university application in the past two weeks for the 2019 entry. I have found some great universities that offer help for people on the spectrum, and do a great Creative Writing degree course. Though I have few close friends, the ones I do have are brilliant, and I am contented most of the time. I am writing most days, which is what I enjoy, and when I’m not, I’m getting excited for Christmas, or working and socializing at college. If things remain as well as they are currently, the rest of my diagnosis and the aftermath will not be as stressful as I keep thinking.

We want to hear your story. Become a Mighty contributor here.

Getty image by Devonyu.

Find this story helpful? Share it with someone you care about.