Like everyone else, the person that I am today has been shaped by experiences and challenges. Some of the challenges I have faced are due to the group of characteristics that carry the label ‘autism’.
At the end of this month, I will have had the label for a year. Of course, I have been living with autism and its effect on me for a lifetime. There is much more to me than autism, but my personality and my autism are still inextricably linked.
That’s one of the things I’ve found most challenging over the past year. In trying to work out who I am, and where I belong in the world, I’ve come across many different narratives about autism. That’s unsurprising, really, as everyone with autism experiences their condition differently.
But many of the narratives are so negative.
And because autism is so personal, so key to my experiences and to who I am, reading or hearing something negative about autism feels like a personal attack.
Funnily enough, it’s fine when someone else with autism is talking about what they find difficult, or what they dislike about living with their condition. I fully acknowledge that being autistic is often incredibly hard-going. I wouldn’t be writing this blog if I wasn’t still struggling with it to some extent.
But the narrative that autism is somehow ‘bad’; that there needs to be a ‘cure’… that is an uncomfortable and upsetting thing for me to hear.
My brain works in a different way to most people’s. I see the world slightly differently sometimes. But that doesn’t mean I’m bad, or wrong, or need to be fixed – I’m not broken, just constructed to a different pattern!
It’s easy to dwell on the negatives that autism brings. They are the most obvious external signs. But for every negative, I find there’s a positive side.
The brain that finds navigating through social situations hard and exhausting is the same brain that can spot patterns in behaviour and draw conclusions about what could happen next, often to a greater degree of accuracy than someone who prides themselves on their ‘people skills’.
The sensory sensitivities that make it difficult to be in a crowded and noisy environment can also be used to bring a great sense of joy, happiness and belonging through listening to and playing music.
The person who thinks in pictures and struggles with the abstract has learnt to collect and use words effectively, because each word has its own individual meaning and the visual metaphors she uses can convey some of the images in her mind.
But, in spite of all of this, autism is still the elephant in the room.
Even when people try to take positive action, it can come across as negative. Campaigns about getting more autistic adults into employment seem to focus either on trying to persuade employers that people with autism can be effective despite their autism, or on stereotypes that I personally find unhelpful and inaccurate. (Put me in one of the roles that is stereotypically associated with people on the autism spectrum and I’d struggle: I don’t have the right skill set.)
I want people to employ me because I’m actually good at what I do. And part of what makes me good at what I do is how I think, and one of the main reasons why I think how I do is because I’m autistic.
I want people to like me for myself, not just spend time with me because they think they are somehow doing a charitable thing or doing their good deed for the day.
Most of all, I am scared that others will listen to the negative messages that are everywhere, and that they will judge me. Very few people actually talk to me about my condition and how I am affected. I wish they would start. Because that’s the only way that the elephant in the room is ever going to leave. And it’s taking up far too much space that could be used for other things…