My disability is a big part of my identity. If you’ve been following my blog for a while, you might know that already. If not, don’t worry; you don’t have to stick around for long to realise just how open I am about it. When I have a whole category dedicated towards my disability, autism, it’s not much of a surprise.
However, it might surprise you that I never intended to use my blog as a platform to discuss my disability in the beginning. In August 2015, when this blog began, I didn’t even know I had this disability, even though I’ve been living with it my entire life. Looking back, it’s surreal to think about how much has changed in such a short period of time.
Even after my diagnosis, I took my time before opening up about it on the internet. It was important to me that those closest to me knew about it in person before I started broadcasting it to the internet. I went ahead and wrote one post that I perfectly intended to be a one-off, but obviously that wasn’t meant to be. Instead, talking about my disability has become a staple part of this blog that I wouldn’t change for anything.
You might be wondering why I decided to be so open about my disability after hiding it for so long in the beginning. Here’s why…
I wanted those closest to me to be able to read about the parts of my disability I couldn’t explain well in person
I’m autistic, which means I’m not the greatest at communicating. I rely mostly on scripted verbal communication, so it can be difficult for me to provide spontaneous answers to questions when they’re asked. However, I’ve always loved writing, and feel far more confident in written communication than verbal communication, so I thought this may might work quite well.
Since starting to open up on this blog, I’ve been able to use it as a resource to direct my family and friends to when I can’t answer their question in the moment. It could be that they aren’t comfortable with asking me a personal question at the time, which is where approaching my blog becomes a blessing in disguise for all concerned.
This isn’t to say I hold my family and friends hostage, telling them they must read my blog, but it feels good to know it’s there if they want it.
Although this was my primary reason, though, I soon realised that I could do more with my blog than simply using it to inform those closest to me about my condition. This brings me onto my next point…
I want to raise wider awareness and understanding about autism online
While it’s true that most people have heard of autism before, very few people actually understand it. This means that lots of people are falling into believing stereotypes about my disability that may not be true, and at worse, could be damaging to an entire community of people.
A lot of people, for example, believe that autism is a condition that only affects boys. This is something we’re proving false with medical advances and continued research, but not necessarily something people who don’t follow autism news would know. I’ve actually written an entire post dedicated to autism myths that simply aren’t true if you want to know more about the truth behind this condition.
I want people to recognise just how diverse this condition is
So many people are blinded by a single vision of what autism is. They think that autism describes symptoms that everyone with the condition must have, and that’s not the case. In fact, autism is such a diverse disability that it’s suggested that everyone presents slightly differently. This also means trying to group us into sub-groups like high-functioning or low-functioning shouldn’t be used, because our disability just doesn’t work like that.
I want to offer an alternative perspective into the autism conversation
Something I found out when I was researching autism in the weeks and months after my diagnosis was that a lot of the information out there isn’t aimed at the disabled people themselves. Instead, it’s written by and for parents, professionals or carers who have to deal with autistic people. It makes us seem like burdens, and frankly? I’m tired of feeling like my disability makes me a useless contributor to society.
Obviously I completely understand the need to recognise outside influences in the autism conversation, but I think there needs to be more influence from actually autistic people, too. After all, what’s better than finding out information about a disability from those who actually experience it?
Steve Silberman, author of Neurotribes, made a good point when asked about a sequel to his book in an interview when he said he “think[s] autistic people should be leading the societal conversation on autism now”.
To show autistic people there are others like them out there
I can’t talk for anyone else, but I know after my own diagnosis, I felt so alone. There was very little in the way of media representation at the time of my diagnosis, which made me feel lost, and like a rarity. In reality, the disabled community I’m part of is bigger than I could have ever imagined. By talking about my disability so candidly, I hope to stop others from facing the loneliness I faced after my own diagnosis.
By talking about my disability online, I also opened myself up to being contacted by other autistic people. This was a lifesaver when it came to pulling myself out of the gutter. I saw there were people like me, and I finally felt like I belonged, for the first time in almost eighteen years.
Is there something you’re passionate about talking about online? Let me know why in the comments below.
Thanks for reading, and until next time,
You can also email me at firstname.lastname@example.org