sophalicious

Autism is a lifelong developmental disability that affects the way people perceive the world around them, how they communicate and how they interact.
I will be stuck in this prison for life.

The difficult thing about writing about autism is the fact that despite what it is, we are so set on finding something to blame for it. Speaking candidly about my autism often lands me “Oh, you know vaccines cause that?” or, “Did your mother take paracetamol when she was pregnant with you?”
Yet there is no known cause for autism. We are just desperate to push an anti-vaccination, anti-medicine agenda that we will shame those who suffer with autism for getting vaccinated before they were even able to talk. Which means I can already foresee this particular post receiving a lot of ridicule, whether it to be my face or the talk of whatever small town it has reached.

However, I’m not necessarily scared of ridicule or believe it matter too much in the grand scheme of things, and I believe talking openly and candidly about what life is like for me serves as a bit of awareness given to what it truly means to be autistic. I will not bore the people with endless sources disproving their anti-vaccination agenda, because people will simply believe whatever serves them. They will believe what they want to hear.

What is sad to me is that no one really wants to know what this is like. Not just for me, but for others who have autism too. When I am open about my autism, I often hear that I don’t ‘seem autistic’. That I am performing well enough within the bounds of society that I appear normal, and therefore acceptable.
But I am not normal. I am not ‘acceptable’. I do not feel comfortable playing the role that I do just to somehow fit in. Because at the end of the day, I don’t fit in. That is not necessarily a bad thing.
It is, however, a lonely thing. It feels very lonely to be the only person with autism in any group I find myself in. It is a breath of fresh air whenever I meet someone else who is also autistic, almost like forming a secret alliance against the neurotypical.

I say all of this, because people who don’t have autism can never truly understand the way I think and feel. I cannot verbalise very well how my brain operates. I find myself overexplaining everything I am doing and every thought process I have, in the hopes that it will somehow resonate.
I have been told plenty of times that overexplaining isn’t necessary, but is that true? If I say that I can feel the clothes too much on my skin, will that make sense on its own? Or do I have to delve, and explain that it feels as though everything is sending tiny electric shocks throughout my legs, and that everything feels like it’s too closely attached to my skin, and now I can’t cope with being spoken to until it subsides?
And this is only the tip of the iceberg. I have often found myself resisting the urge to lash out because I have a bad internet connection, and now noises have become too loud in my ears, and I’m struggling to cope with the amount of things happening at once.
Am I truly to believe that if I didn’t explain this in detail, it would make sense to anyone out there who doesn’t have autism too?

For me as well, there’s also the issue of planning. I find myself getting very frustrated when the plan I have formed in my head is not followed by those around me, even if I didn’t verbalise this plan in the first place. I operate on a schedule, and I find it very hard to then bend for someone’s lack of schedule.
There is no shame in living spontaneously, and it often makes me feel very rigid and like I am not fun for not being able to have that level of spontaneity. I feel uncomfortable when I do not know what the plan is, or when the plan is not followed, or when there is no plan at all. Where other people can just go with the flow, I need time to mentally prepare myself for any potential social interaction or I need to know what the menu is so I don’t embarrass myself ordering dinner.
I have tried very hard to loosen up in this regard. I have tried to be okay with lack of plans, I have tried to be spontaneous, and all it does is make me anxious. And asking someone to change the way they operate for my comfort just feels unfair.

And this is why I consider having autism to be a very lonely thing. Because I am the one who’s expected to adapt to what is considered ‘normal’. Which is ironic, as part of the problem with autism is lacking the ability to adapt. Yet, it is what society expects. We have to swallow down our autism and our experience for the comfort of the masses. We are the freak show, after all.
You may be reading this thinking it is unfair of me to say. That there is plenty of acceptance for autism and it’s quirks. But is there? When people are made fun of for doing things or liking things, being called autistic as an insult, is that considered acceptance?
The very way in which I function, my entire make up, is used as a way to insult people. We have become entirely desensitised to the fact that this is a real thing that people have to deal with. We have decided it is insulting, shameful and wrong to be the way that I am.

I internalised that shame, for a very long time. It took me years to become open about my autism diagnosis. I have spent the majority of my life wishing I didn’t have autism at all. I grew up living in shame of the fact that I was so evidently different from everyone around me, and I tried to make myself smaller so it wouldn’t stick out so much.
I am now told that I don’t seem autistic at all, like that is somehow supposed to make me feel better. Like I shouldn’t feel the shame that I did because I appear normal.
Why should I have ever felt the shame that I did?

Now, it is important to note that the experiences I have chosen to share do not apply to every single person you may know with autism. It is a spectrum, and therefore not a ‘one size fits all’ scenario. But I can only speak for myself, I will not try and box the entire autistic community into my experience just to make it easier to digest.
It is lonely enough being autistic without having people assume what you’re thinking and what you’re feeling. It’s hard enough being made fun of when you don’t understand a certain euphemism or common saying, without then also feeling ridiculed for not having the experience you read about online.

Maybe my words will serve as a somewhat wake-up call into the way we deal with autistic people. Maybe it will encourage us all as a collective to stop using my developmental disability as a way to insult something stupid our friends do. Maybe this will be read and discarded as an unnecessary rant. I am not quite sure.
But I hope the awareness is there, as to what it can be like for someone like me. And I hope we learn to be kinder. I hope we learn the acceptance we try to convince ourselves we have. And I hope, to anyone who may have autism themselves, I hope we learn to be kinder to ourselves. I hope we can one day unlearn the shame we were forced to feel.