I watched a documentary today about a man with autism, who works on the TV show Springwatch. In the documentary he talks about autism and his life. He also goes to America and meets people who want to find a ‘cure’ for autism. When I watched this part I found it uncomfortable and difficult to watch. Children with autism were being forced to change their behaviours to try to make them ‘normal’.
Personally if someone asked me if I wanted to be ‘cured’ I would say no. On difficult days I might think yes because I would want it all to stop, but if I didn’t have autism and Selective Mutism I think I might be a completely different person. There are definitely difficult things I have to deal with but then there are some positives. I don’t think I would be as compassionate or intelligent without having had some of the experiences I’ve had. I’ve learned to listen, be kind, and make my own decisions. I am not the same as everyone else and I like it that way. I think it would be boring if everyone was the same. I’m still a person just like everyone else. I’m not an animal to be tested on or tamed.
I can understand people with high functioning autism to maybe want a cure, but everyone should be allowed a choice.
I want to talk about my experience of discrimination. Unfortunately discrimination can occur when you have a disorder like SM, since you’re not able to speak up for yourself and this can make you vulnerable.
Due to a lack of understanding of Selective Mutism people made up their own minds about me and I am often labelled ‘shy’ or ‘rude’. There are people that just don’t understand why or how I can spend so much time not speaking. I have heard people say that they can’t imagine not talking for hours on end. It annoys me that people say and think things like this, because the truth is if you had SM you wouldn’t have a choice. We don’t choose to suffer. There is no choice. We don’t ask ourselves ‘would I like to talk today? Yes or no?’ We want to talk, but we just don’t feel able to get the words out.
Sometimes people have taken advantage of my silence and I have been bullied as a result. When I was at college a girl in my class would ask me if I’m okay. I would nod and try to carry on with what I was doing. She saw me nod, but seconds after she would ask me if I was okay again. She always laughed like it was funny and it was a joke. She would stand in my way and block my way. She would tell me to hurry up if I was walking too slowly and push past me. I tried to tell the teachers but I was ignored most of the time. The staff that did try to help didn’t make things much better. I was so relieved when the year was over.
Another example of a time when I was experiencing discrimination was when I finished school and I was trying to apply for a sixth form. I was trying to choose subjects but the staff kept telling me I couldn’t do the subjects I picked because they required speaking. I was eventually told I couldn’t go to sixth form there because there were no subjects I could do. My mum and support workers weren’t happy with that and it got taken to court. I was anxious about going to court but it was quite short and small. The people from the sixth form didn’t even turn up. In the end I was allowed to go to the sixth form centre but I decided not to. I didn’t want to go somewhere that I might feel unwanted so I went to college instead.
When I was at college I had a friend that didn’t turn out to be such a great friend. She was quiet and shy so I thought she would be a good friend for me. As it turns out I think I am better surrounding myself with talkative, chatty friends. I seem to feel more comfortable around those kinds of people. So after a while of being friends with this person at college I wanted to try talking to them on the phone. They seemed happy to go along with it so I tried to call her. She picked up but didn’t say anything. I was saying ‘hello?’ and still there was silence on her side. Eventually I gave up. During our friendship it seemed like I was doing a lot of the work. She wouldn’t talk directly to me, and she would only write on my whiteboard to talk to me. It was like she thought I was deaf. I got really tired of it all and stopped talking to her and spending time with her. About a year later I got a voicemail from her phone. She and her friend had decided to call me as some kind of joke. In the voicemail they were laughing about me and the sound of my voice in my voicemail recording message. The college were fortunately able to deal with it and tell the people involved that it wasn’t acceptable to do things like that. I got an apology note as well.
People also seem to have difficulty understanding that it is difficult for us with SM to speak face to face, on the phone, or even online sometimes. Even if we aren’t in front of someone or if we are behind a screen it can be difficult. When I am online writing an e-mail or using social media I tend to read back what I’ve written and worry that I might have said something I shouldn’t have. I sometimes send an e-mail and wish I could take it back or unsend it. I delete posts on social media. Even as I am writing this I am thinking hard about what I’m writing. It’s like I want to be ‘perfect’ even though I know no one is perfect.
It is very difficult to live in a world that can be cruel when you have SM.