As a child, I was never invited to birthday parties. I wasn’t even aware this was a “thing” until I had children of my own. I was the child who felt somehow different, who found social situations confusing and who would stim and make strange noises. The signs were there but were dismissed by family as something I would grow out of and by teachers as eccentricities. I was of a generation where autism was still in the early days of being fully understood and all but the most obvious of cases were overlooked or, in some cases, misdiagnosed. I managed to get through childhood and early adulthood with a mixture of copying my peers and the fact that I was completely unaware that not everybody experienced the world in the way I do.
By chance, I found myself reading about autism in my early 40s and quickly realized that many of the signs applied to me, both as a child and now. Not only the main signs of autism but also many of the common co-morbid conditions. Throughout my life I’d baffled doctors with my constant stomach problems and severe vertigo and light sensitivity. I’d had decades of tests, medications and even psychiatric counseling but nothing seemed to help and nobody could find a root cause. How obvious it now seemed, researching autism and finding all the pieces suddenly fitting together.
After a couple of years of researching autism on a daily basis, I finally decided to visit my GP. My doctor looked through my medical history in light of my findings and agreed that it warranted investigation, and so I was placed on a waiting list for assessment. Eventually, after a series of appointments and tests with both myself and a family member, a diagnosis of autism spectrum disorder was confirmed. I had just turned 45, and it really feels that it was then that my life truly began. The sense of relief was enormous. A huge weight was lifted off my shoulders, and I really had a sense of who I was. For the first time in my life, I could be “me.”
I still mask (it’s a hard habit to get out of when you’ve been doing it for so long) but I no longer needed to hide who I am. And you wouldn’t believe just how exhausting masking actually is. Everything finally made sense, and I was slowly able to forgive myself for a lifetime of my own perceived failings. Yes, I had been happily married for many years with happy, successful children, but I had always struggled with everyday life when others didn’t seem to. Social situations, sensory differences and many other challenges were all something I’d just lived with without explanation. Now I knew I am autistic.
For me this revelation was huge and certainly nothing to be embarrassed or ashamed about. I’ve discovered many times that autism only seems to be seen as this terrible condition that can be a devastating diagnosis by some people. For myself, as an autistic person, it is no such thing. It is rather the lack of understanding from others that is the real cause of problems. I am not neurotypical and so I see, feel, hear and experience everything differently in a world that is not built for me. However, armed with my diagnosis and this knowledge, I can accept and understand these differences.
Since my diagnosis, the world has opened up for me. I am now doing things I wouldn’t have even considered attempting before I was diagnosed. I know my limitations, but I also now know my strengths. Would I rather I’d been diagnosed as a child? Of course. I spent a lot of time wondering what my life would have been like with that knowledge. However, I will be forever grateful for my diagnosis, no matter how late in life it came. I finally know who I am. Autism is part and parcel of who I am. I am autistic, but I wouldn’t change that even if it were possible.
That’s not to say I don’t struggle. I do on a daily basis. Sensory differences are especially a big problem for me and also the anxiety and panic attacks, more common amongst the autistic population, are something I have to live with daily. I don’t find social situations any less confusing or overwhelming than I did before my diagnosis, but now I have an explanation. There’s a big difference between an explanation and an excuse. Whereas before I would make excuses to avoid situations I couldn’t cope with, now I have and can offer an explanation. But one of the biggest challenges I now face is the lack of understanding and acceptance from others, now that I’m open about being autistic. On the whole people are keen to learn and understand, but there is a lot of work still to be done. I now give talks around the country about my experiences, and the rewards and the sense of fulfillment are enormous. Slowly people are beginning to listen to autistic adults and gaining insights that can’t be found elsewhere. This can only be a step in the right direction.
Seeking diagnosis as an adult will always be a personal decision, but speaking for myself, it was all positive. You will often read about adults realizing they are autistic after their children receive a diagnosis, but for me, the opposite happened. It was due to my own diagnosis and realization that many of what I thought were my own characteristics and traits were actually indicators, that I recognized the signs in one of our daughters. As girls tend to present a lot differently to boys, without my diagnosis and the knowledge I had gained we probably would not have picked up on any of the clues that were there.
Were there any disadvantages to my diagnosis? For balance I’d like to say yes, but in reality, in my case, not many. There were the annoying and ill-informed comments that many adults face such as “You don’t look autistic” or “I’d never have known.” Well-intentioned remarks perhaps, but they still appear to the one on the receiving end as belittling your struggles and differences. Or “you’re nothing like my autistic child.” Of course I’m not, I’m a middle-aged man! But I may well have been like your child when I was a child myself but again, maybe not. We’re as different from each other as everybody else is and we’ll experience things just as differently. The key is to ask us. I’m by no means the only autistic adult talking about it. There are loads of us and the people who take the time to listen (and many are) are learning so much more and gaining insights that they simply couldn’t get otherwise. There is no “epidemic of autism.” Knowledge has increased, and as a result so has diagnosis. We’ve always been here, but once upon a time some of us were locked away in institutions. Fortunately now we’re being given a voice. We want to help you better understand not only us but your children, your friends and those with voices but who aren’t being listened to. I only wish that growing up there had not only been more knowledge but also more autistic adults being given the opportunity to be heard. Long may it continue.
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Thinkstock image by den-belitsky