May 4, 2021

Autism and who I actually am

By rosieweldon

So often I am judged on behaviours outside of my control.

I will be called rude for not being able to talk, difficult for my sensory needs and overreacting for my inability to regulate my emotions.

I feel like I have and will spend my life trying to make up for behaviours I can’t control. I am always trying to be kind enough, and help enough, so that people will understand that when I can’t that it isn’t a choice.

I wish people understood that sometimes I act in an autistic way that is not how I would normally choose to act. I wish I didn’t have to see the judgement on others faces. I wish I didn’t have to see them look at me as overreacting when I am emotionally breaking and desperate for it to stop and be able to regain control. I wish I didn’t have to cry quietly so I wasn’t seen as ‘making a big deal’, when I can’t stop crying. I wish I wasn’t looked at as rude when my words are taken from me, when I’m nonverbal. I wish I wasn’t seen as ‘making a big deal’ when I can’t cope with a smell that overloads my senses.

All of these autistic behaviours are the ones that people hold onto and hold against me. I can never be enough of the opposite for it to matter. I have previously said that autistic life is a life of extremes. I wonder how much is the unfair disparity between how we choose to act and how we don’t get to choose.

I want to do everything that I can to help other people. Yet so often I am the one in need of help. I want to take off my partner, but yet I need her to take me to appointments. I want to go and get the milk when she’s tired, but I cannot. I want to tell people to rest, yet so often it is myself that needs rest. I want to make other people’s lives easier, yet so often I make them harder.

Autism is a disability that affects our behaviours and needs. It is literally, by definition, a developmental disability affecting how we think and respond. Yet, unlike most other disabilities, it comes with a huge amount of judgement and misunderstanding that our behaviour is in our control. Why would I choose at 29, with a busy day at work the next day, to have an emotional breakdown when I’m trying to sleep? Why would I choose to meltdown at work when there has been significant change? I see the looks in people’s eyes, I see them willing me to just cut it out and be normal. But I cannot. The same way a physically disabled person doesn’t choose to need the lift, I don’t choose to be rubbish at communicating. But people just don’t get that. Most people have no idea what it feels like to have your words taken from you, or the overwhelming hit of sensory overload. They think I can just deal with it and ‘be normal’. Autism is a disability. It isn’t someone choosing to be a pain. Yet that is so frequently what it feels like. I am treated like I am choosing to just make people’s lives harder. To be a harder work employee, daughter, friend, partner, sister.

I see the frustration and annoyance in people’s eyes as I stare back at them blankly. I see them giving up with me as I fight back against being nonverbal. An animated version of me stuck behind a glass wall in my mind, begging them to understand that I can’t talk right now. That I can’t be who I normally am.

Autistic people are likely to have a strong sense of right and wrong – a need to do good. I certainly have that. It is why I advocate like I do. I want nothing more than to make people’s lives happier and easier. But the sad reality is no matter what behaviour I can control, there is always some that I can’t. And some of that behaviour makes things harder for people – whether a bus driver that it takes longer to figure out the communication with, or a family member that needs to take me somewhere.

I sometimes wonder what I could do to help people more and give more, if I wasn’t autistic. But then I remind myself that that need is within itself an autistic trait and I wouldn’t give it up for anything. So, I’ll carry on, trying to make people’s lives better, in the bitter acceptance that sometimes that just won’t be the case.

My counsellor wants me to work on my self-worth. I have zero doubt she will cast aside comments running myself down based on my autistic behaviour, telling me I can’t hold those against myself. But how can I not, when everyone else does? I know who I am. But it doesn’t matter when people constantly see me for who I am not.

Don’t get me wrong, I am not saying my behaviour outside of autistic influenced ones are perfect. My chosen behaviour is not perfect. But judging me on that is fair. Judging us on our conscious actions is fair. Judging us on behaviour that is disability driven is not.

Please have patience and understanding of autistic people. Please don’t judge us on behaviours outside of our control. See us for those that we can. See us for who we really are.

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