James Sinclair is a marketer and autism advocacy blogger from the UK. He is the founder of the popular website Autistic & Unapologetic where he shares his exploration of what it means to be autistic and reframes the autism advocacy narrative to emphasize understanding and acceptance. He also tweets @AutismRevised and manages the Autistic & Unapologetic page on Facebook. This week he shared his personal experience developing an autistic identity, the wonderful supports provided by his family and fiancée, and stressed the importance of understanding the needs of the individual in any autism advocacy efforts.
Describe your first awareness of your autism diagnosis. How did you learn about your diagnosis? How did you feel about it?
I was always so angry and upset growing up that when I try to remember exact details from my early days, the memories are shrouded by a red mist of rage. For this reason, I always find it challenging to recall the exact moment I learnt of my condition.
Nevertheless, I do remember lots of changes and being upset when I was younger, and, while this couldn’t have made less sense at the time, it has since clicked into place. For example, when I was younger, I was constantly in and out of schools before I had a proper diagnosis and was being educated mainly offsite, in a hospital assessment class (a kind of purgatory you go to while they worked out what was going on). Needless to say, this disruption rattled me even more, and, subsequently, I became more aggressive as a cycle developed and continued across months and years.
I remember that, suddenly, around the age of 6, I was allowed to go back to my first school, but I was now surrounded by support. In retrospect, I am extremely grateful for the opportunities this provided, but at the time, I felt suffocated by it.
I hated that I was under considerable supervision during every hour of every day, and I became irritated that I had an aide looking over my shoulder from the second I walked through the gates. As such, there were many points where I saw all this help as some kind of glowing ‘weirdo’ sign, and I thought it discouraged others from talking to me (I mean, if my meltdowns hadn’t scared them off already).
With that said though, I do remember that I felt bad about my diagnosis once I came to understand that I had one as, for the longest time, I was under the impression that being autistic meant something was wrong with my brain. For this reason, I spent most of my later years at school trying to conceal the things that made me me (much to my detriment).
You’ve written about having frequent meltdowns as a child. What were your primary triggers and what has changed to help you manage them as an adult?
For the first 10 years of my life, I don’t think a day went by that I didn’t have a meltdown. I found any and all music disorienting and aggravating (which included background music in shops or cars going past with the radio on). Additionally, I felt lost by any lack of control and couldn’t quite grasp that life, whether I liked it or not, was totally random. I was labelled the naughty child and parents couldn’t keep their kids far enough from me, as I could become quite physical.
On reflection, everyone could see that this wasn’t because I was angry though. Instead, I was sad, perhaps the saddest child they had ever met, and, although it doesn’t make it any nicer to think about, recent research has shown that this is pretty much how it had to be – as, like sleep (or more accurately a nightmare), autistic people need to have meltdowns to process our emotions.
As an adult, I now shutdown as opposed to meltdown, which means I become quiet and beat myself up over the smallest of things (sometimes digging my nails so hard into my palms that I draw blood). Writing on the site and learning to understand my condition has certainly helped me to recover from these episodes, yet all the preparation in the world can’t prepare me for coping with a shutdown once it happens.
What prompted you to start your website Autistic & Unapologetic? Describe your work to maintain this site (How do you get ideas for new content?, What are your main goals for the site now and/or down the road?, etc.).
As I said before, despite being acutely aware of my diagnosis from a young age, I often made blunders explaining what it meant (stating that I was missing a part of my brain). When I went to university, I finally researched my condition (to better explain it), and, to my shock, I found tons of sites which made those on the spectrum seem like they were suffering a life sentence. This was far from the reality that I and the other autistic people I know had experienced, and I wanted to change this.
Coincidentally, I was also studying marketing at the same time and learning how to game Google to appear on the first page of any search. As a result, I started thinking about how awesome it would be to change the story, so that when people looked up autism, they got something more optimistic and a little less depressing.
Since then I have been carving out my little corner of the internet with the end goal of spreading acceptance and understanding for those who want to know more about autism.
How did you meet your fiancée? How did you know she was the one?
When I first met Carolyn at a music festival, I could tell that she was fiercely independent. It’s a quality I hadn’t seen in many people, and I loved that she knew exactly what she wanted and how to get it. However, it was during a date to the Manchester Christmas Markets (some 8 years ago) that I became sure she was the one.
I remember that we were walking past a comic book shop, and, although I wanted to look in, I didn’t want her to know I was a nerd. This didn’t stop me though so, when I thought she wasn’t looking, I quickly glanced through the window to check out the latest releases. Awkwardly, I may have looked a little longer than intended because, when I turned back, she had stopped talking and was staring at me looking into geek-topia (my cool guy cover had been blown).
For some stupid reason, I tried to pretend that I didn’t really care about the new issue of Moon Knight and that I was just curious, but she saw through my response and told me that I don’t have to pretend to be something I’m not.
Ever since, Carolyn has always encouraged me to be comfortable with who I am, which thankfully meant I no longer had to hide my obsessions or try to impress her by taking her to clubs which were too loud for me. It’s clichéd, but now when I’m with her I feel like I am the best/happiest version of myself, and I do my best to make her feel the same.
Describe something important your parents did to support you growing up.
Not giving up. It would have been so easy for my parents to throw in the towel and let me be someone else’s problem when I was young. However, through all the small steps forward and the many leaps back, they stuck by me.
In particular, my mum was always on the lookout for new therapies, clubs and special ed tools, and, when things had no effect or began losing their success, she never quit – even after returning to the drawing board for the millionth time.
My family also sacrificed a lot when I was growing up, with my sister rarely being allowed/wanting to bring friends home, my parents building their lives around my routine and our home in constant need of renovating – as my meltdowns were so destructive. Yet, this never deterred them, and they all selflessly pitched in and marched on.
That’s not to say my family never felt disheartened by the lack of progress. However, they all knew that, when they were done wallowing, it was time to get back on the horse and solider on – something which eventually led to all those small steps of success developing me into the person I am today.
What mistakes do you see autism advocates make?
This one is on neurodiverse advocates as much as it is on neurotypicals. It always aggravates me when those trying to support autistic people fight amongst themselves online.
What I find particularly frustrating about this is that, in truth, no one way to help someone on the spectrum is correct, and, as the spectrum is so huge, there is always room for more perspectives. Nevertheless, people are so certain that what they have experienced is more important than what others have, that they come at each other with knives and pitchforks on social media.
I personally believe this is because everyone feels like they are fighting for the same attention, and they don’t want their message diluted by someone else’s, but this doesn’t mean you should take down another advocate. Instead, we need to work out a way to get the public to be more open to a variety of ideas, together.
What advice do you have for parents, families, or teachers trying to help raise children with positive autistic identities?
All the best scientists with all the best equipment still haven’t figured out what autism actually is, so don’t weigh yourself down trying to make the breakthrough of the century. If you have a single autistic child, focus on what makes them tick. If you have a classroom full of us, see the individuals beyond our united condition.
I’m certain that there is no one right way of helping every autistic person, so being prepared to adapt and change is crucial for finding success. Furthermore, don’t be surprised if one solution which was a shoo-in suddenly stops having an impact. Autism isn’t something we overcome (nor is it something I’d want to), it’s part of who we are and being ready to accept that means expecting it to change with us.
With all that considered, attitudes are contagious. So, if you are feeling glum about a situation, we will likely share the feeling. Therefore, if you go in with an optimistic attitude, you’re more likely to see results you want.