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 just want to let you all know what is going on with me at the moment. I have debated whether to say anything or not, but I just want to be honest.
As you all know I suffer with Selective Mutism. People with SM can also have depression.
Lately things have been quite hard and dark for me. My depression has got quite bad and I have been struggling.
I decided that I can’t record any videos for a while and I might not write as many blog posts whilst things are so difficult me. I want to be able to help people but I don’t feel able to do that when I am so mentally and emotionally ill.
I hope you all understand. I just wanted to let you all know why I might not be so active in some places anymore.
I hope things will get better at some point but right now that is how everything is.
Thank you for reading this.
When I think of the word Christmas I have mixed feelings. I like Christmas but at the same time it can be a hard day for me.
I find it hard because there are people watching me opening presents, waiting for my reaction. I try to smile and act happy but it is hard. I am grateful for all the gifts I receive but it is hard for me to show it. I think other people with SM feel the same.
I want to be happy but the truth is neither depression or anxiety take a day off, even if it Christmas. I can’t just choose what day to be happy. It doesn’t work like that.
But I will try my best to have a nice Christmas this year, just like every other year.
I find myself reflecting a lot on this past year. I volunteered at a charity shop, left, and now I have just started volunteering at a new charity shop. It is like a new beginning. Also this year I started recording videos of myself speaking about SM on YouTube. I created a Facebook group and did some live videos. And I started blogging here. I am very grateful to everyone that has supported me this year.
I hope you all have a lovely Christmas. For those of you who struggle, I hope you get through the day okay.
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.
Hello everyone. My name is Christina and this is my first ever blog. I’ve always liked writing so I thought I would give this a try. I’m 21 years old and I suffer from Selective Mutism and Atypical Autism. I will be talking about Selective Mutism quite a bit as it is something that impacts my life very significantly.
Selective Mutism (SM for short) is a communication disorder caused by high levels of anxiety. People who suffer from SM find it extremely difficult to speak to others in social situations such as schools, colleges, work places, parties, etc. For many, the only place we feel comfortable and safe is at home with close family. Although in some cases it can be hard for some of us to even feel able to speak then.
Imagine you were in a crowded room. There was lots of noise, people laughing and chatting to each other. You are stood in a corner of the room, watching and listening to everyone, trying to take it all in. You feel extremely anxious, even though you are only standing there and watching. You want to stay invisible and you hope no one approaches you. Someone walks over to you. Your anxiety levels get even higher. You feel frozen. You are thinking ‘oh no, not again’. The person approaches you and tries to talk to you.
“Hi. What is your name?” they ask you.
You have the word in your head. Just one word. Your name. You try to open your mouth but nothing comes out. It feels like something is keeping your voice trapped. You can’t make the word come out. You want it to come so desperately, but it just won’t. Your hands are shaking. You are sweating, and your heartbeat is racing. You are struggling to catch your breath. You are fighting this battle inside you. No one else can see it.
The person looks at you, waiting expectantly. When nothing comes, the atmosphere feels awkward. They eventually give up and move away. They think you’re rude, or just really shy. They don’t attempt to come back and try to talk to you. You are alone in a crowd again.
You feel sad. You failed again. You ask yourself ‘why do I have to be like this?’ You need to get out of that room. You need to escape. You don’t want to be there. You quietly slip out the door.
This is what it’s like to live with Selective Mutism.