After 39 and a half years of not knowing what made me tick, why I communicated and behaved the way I did, I finally got confirmation that I am autistic. It was a long time coming – and it answered so many questions it was overwhelming to say the least. I had lived a very happy life up to that point (and still very much do!), but it was also marked with bullying at both school and work, being called over sensitive or uncaring robot, miscommunication, misunderstandings and so many of the other experiences almost all autistic people have. It was filled with masking, and failures to mask, both of which led to rejection. If I had a pound for every time I have been called weird, I would be an incredibly wealthy woman. For many people, receiving a diagnosis of autism for either themselves or a loved one is a difficult experience – autism is highly stigmatised and the whole process of diagnosis can be heavily based on your struggles. Yet for me, it’s one of the highlights of my life – I celebrate the anniversary of that day like a second birthday (minus the presents, but I’m now wondering if I should treat myself to new autism related merch on that day).
So why was I ok with being told I was autistic? Well, for a whole bunch of reasons! The primary reason I was so damn happy to be identified as autistic is because I no longer saw myself as having something ‘wrong’ with me. All those times communication broke down was not purely my fault, I am not too sensitive or robotic – I am autistic. I work differently. Not broken, not busted, different.
When I was 16, after years of being called weird, I decided to ‘own’ my weirdness. I can’t help being seen as weird and, in all honesty, I actually like my oddities, my differences, my quirks. That was a huge factor in preserving my self-esteem. But that didn’t stop me from feeling isolated much of the time, and it did not stop others from having trouble understanding where I am coming from too. But now I can fully immerse myself with the autistic community, both locally and find my tribe online too. This has been a transformational experience. After a lifetime of not quite fitting in to now having a place where I feel I belong outside of my home – I don’t think there are enough words to describe what it means to me. I had been content to be a loner weirdo, but being a weirdo with a community is wonderful. Being able to talk about lived experiences without fear of being misunderstood, having others empathise as they have been here too is enormously validating. I had to wait 39 years for it, but boy was it worth the wait.
I can embrace my autistic identity as well. I no longer think “I should be able to manage this without help, everyone else does”. I can say “this is something I find tricky, but here’s some things I can do to manage this more easily.” I can wear sunglasses indoors without feeling like a diva. I don’t feel bad about having 15 different alarms and notes dotted all over my house. I happily take headphones everywhere. I constantly have a fidget toy in my pocket because it helps me. I can start to say no to things with less guilt (I am still working on this one). I can protect my boundaries. It’s extremely liberating.
I can share my autistic identity with my autistic family members. I can reassure them that they are not broken and don’t need fixed. I can help them to see their strengths which come from being autistic – their memory, their sense of humour, their unwavering loyalty, their unique perspective, their unquenchable thirst for knowledge.
I can share all of that with the service users at the charity I work for and the charity I volunteer for too. I can help them reframe their understanding of autism and help them see new ways to support themselves, their family members, their clients, their staff.
I can throw autistic pride events. I can create spaces where people celebrate their identity and are accepted as who they are. A place to stim, communicate autistically, be creative.
I can embrace the sides of me I was previously worried or embarrassed about. I can watch cartoons, read books aimed at younger people, I can get overly excited about my birthday. I can hyper focus on video games, I can wear geeky t-shirts, I can do all of these things and forget about how old I am. Why is there an age cap on fun? Why do I have to act grown up all the time? Why aren’t other people as excited about their hobbies and interests as autistic people are?
And yes, I still have many of the struggles I had before. Sometimes even with all my notes and reminders I forget things – or I’ll hyper focus for longer than planned. Even with my headphones and sunglasses I can get overloaded with sensory information. Sometimes that’s ok, sometimes it’s not. There are still times when I try to express myself but even though we are both talking English it feels like we are talking a different language. I still have no idea how to end conversations efficiently! I still struggle to start conversations too (unless it’s about something I am very passionate about). But I no longer blame myself for these things, and I can keep trying new ways of supporting myself. I can try to help others see where I am coming from.
Being autistic is still widely misunderstood and stigmatised, but knowing I am autistic and allowing myself to live autistically in a way that benefits me is one of the best things that could have happened to me. I am hopeful that as a society we can work together to change the stigma and challenge those myths. I am hopeful that there will be fewer people who wrongly view us as unfeeling, who see us as incapable, or less worthy. I am hopeful that autistic people will get more seats at the table. Lots of us involved in discussions about autism as standard rather than it being remarkable. I hope we can get taken more seriously, have our differences not just accepted but embraced and celebrated. We have a long way to go before autistic people are seen as equals, so let’s get there together.
By Marion