I had just posted something on facebook about how annoying it sometimes can be to have autism. A friend of mine didn’t understand how what was annoying was related to having autism and she actually asked “But isn’t autism a mental thing, and not a physical?”. I don’t want to give that friend the idea that I feel that she’s an idiot or something, because the problem probably isn’t her fault for the most part. It’s a sort of ignorance, born from inadequate information. I replied to her with a lengthier explanation of what the problem really was about and how that was related to autism. But there are more people out there who, like her, have a misconception about autism or are simply not informed enough. So to put some more information out there about autism I decided to write this. I don’t want to write this to get pity. I want to write this so that people understand better what I, and people like me, live with everyday and so that they might understand better why I react the way that I, or people like me, do. Maybe also that the people around me, can know a little better what my problems are and how they can help minimize them so that I can live a little easier and life with me can be a little easier.
I have to say up front that not all people with autism have the same problems, for instance, there are many autistic people who are not as hypersentive as I am. I am ‘lucky’ enough to be quite a social person who can talk relatively easily, so for me communication is LESS of a problem than for the autistic people who have difficulties communicating, for a variety of reasons. So, while there are things that are found to be more common among people with autism, it does not actually have to mean that every person with autism has that. Vice versa, there are things that are related to someone’s autism that are not shared with another person’s autism. So in my piece I can only go into more detail about problems or good things that are related to my autism.
To address the misconception that my friend had. No. Autism is not just a mental thing, it’s actually a brain thing that is in our DNA.
Most problems with autism usually originate from a problem with sensory processing. Most children learn to process sensory input. What does that sound mean? What does this smell mean? Who is that waving at me? What is that enclosing me? What is sliding down my back? With children with autism that process takes longer to complete. People with autism are born with a sort of learning disability regarding the world and their bodies. It takes us longer to learn that new things aren’t evil and out to destroy us, or out to hurt us. This is why some people with autism are called ‘retards’, because we sometimes take longer to process a question and formulate an answer.
Some of the people with autism move in a sort of jerky motion. I mostly don’t have that because I have parents who danced, brothers who danced, and I have been dancing since the age of 4. I can be clumsy and I have preferences in how I like to use my body (such as the way that I sit or lie down). So, unfortunately I can’t really say anything about the how and why of the people with autism who lack the ability to move fluidly, or even what you might call normal.
I am hypersensitive, this means that for me, sensory input can come in twice as strong, or stronger, than what neurotypical people (people without autism) experience. On a bad day walking down the street can feel like walking in a hardcore festival. That may sound exaggerated, but it hardly isn’t. I like going to fantasy fairs, but I sometimes have to stay at the fringes of the bands on stage because the sound can hurt my ears or my stomach. When dogs bark around me, you can quickly find me with my fingers in my ears because the sound is just so loud (and in some cases, so high). When Men of Steel come out in the movie theaters I went to see it with my boyfriend in the IMAX version. He knew of my problems with sound, so when he knew that it was going to get loud because of explosions or something he would cover my ears. I spend most of that movie hunched behind my boyfriend to get away from the sound (and we were in the back of the room), with mine and his hands over my ears. And I finally had to leave the room because I had gotten an headache from the movie. I can’t go to IMAX showings because the sound that they project is already really loud and the theaters can’t turn it down. I’ve also had to walk out of restaurants because I have trouble sleeping because I can’t turn off hearing sounds from outside, so I have a white noise machine next to my head that produces ocean wave sounds so that I can calm down and let the other sounds drown in the white noise of the waves. That’s the theory at least, but it doesn’t always work out that great. There are plenty of nights when my head is still so full of everything that my head can’t settle and I spend most of the night going over everything, whether I want to or not.
I hate perfume because the smell is really strong for me, same with deodorant. When I have to get shampoo or shower gel I have to smell it, to know if that smell is ok for me. Alcoholic beverages stink almost as bad as perfume and deodorant do, so when someone at my table is drinking wine I sometimes have to kindly ask them to move their glass of wine further away from me.
I am kickass at those hidden object games because I usually see the individual objects better, I am also great at finding things that someone has lost in a room. That perk also comes from my autism, because my brain processes the input for every single item and not for the mess in the room as a whole.
Going out to restaurants can be a real nightmare for me because sometimes I don’t like the tastes of certain foods, or the feeling that they have in my mouth, or the consistency of the food, or the sound that it makes in my mouth when I eat it. And if you’re wondering about that last one, then really listen to your mouth when you eat something next time. There are foods that make me cringe when I eat it, couple that with a feeling in my mouth that gives me a gag reflex and it really goes on the ‘least favourite food’ list. Some things I can’t eat separately, like cheese (but that has to do with a stomach problem), but I can eat them in combination with other food (such as ham and cheese). Chips these days I can only eat in moderation, because after a certain amount of them the taste of them becomes so strong that I don’t like to eat them anymore. So sometimes it can take a while to find a restaurant where I can eat. Doubly so if I’m going to eat with people who I know will look weirdly at me for asking the waiter to take my food back and re-make it without certain elements. Or when I have to leave maybe half of what was on the plate because I can’t eat it. Because I know that they will look weirdly it makes my thing with food a bigger thing for me, and I will try as hard as a I can to find food that will not provoke actions that will make them look weirdly at me. That can sometimes lead to a stomach that is so twisted up that my appetite is gone or I can eat even fewer things and it really just escalates for me. It has happened that at some point I get so worked up about my thing with food that I just want a normal plate of normal food with no extra thingamies and that I just start crying. So to make it easier for me, I like to know upfront what the possibilities are with food.
Another kickass thing about my autism is that I have excellent memory and that I remember very small details about things. My boyfriend has used me as an extra notepad from time to time, to help him remember what needs to be done or what needs to be filled in where.
A lot of miscommunication happens because my brain walks along different paths, or because I am still in an earlier part of the conversation, or when my mind picked out a single element from the conversation and started running along a path that opened up and I suddenly start talking about a completely different thing. I have problems with the social aspects of life because I don’t always completely understand what someone is saying, or how they mean it. Sometimes when I am nervous or anxious my social reactions are sort of jerky, that’s my best descriptions of them. When I get nervous or anxious I appear to lose the ability to think fluidly, I am also more clumsy then. I can start stuttering a bit, or even be completely unable to speak. When I am nervous or anxious I always think of myself as a cornered cat that will try to make weird jumps just to get out of that corner. When I am especially tired a wall can be built up in my head around my ability to speak. I am there, I am listening, I am mostly processing what you’re saying, but for whatever reason I cannot open my mouth and use my voice to answer you. Outward communication just takes up too much energy then. I also can’t eat certain foods when I’m that tired.
I’m going to end it here. This is just a part of what I am dealing with on a daily basis. On days when I’m tired everything costs more energy and comes in harder. On days where I’ve had to process too much I shut down for the rest of it, because my brain has to catch up. So for all the people out there who have autistic people in their surroundings, and don’t always understand how or why we work in a certain way, we don’t always know it either. But you can rest assured that we are not acting up in public simply because we want to embarrass you or show you how weird we are. My biggest dream is to just be normal, to be able to go into any restaurant, order whatever on the menu, drink alcohol, and be what society deems normal. Although not all autistic people will share my dreams, I do know that we don’t want to be left out. We want to be long with the rest of you, but sometimes our bodies make it hard to function on a normal level, let alone do whatever society thinks we should do. But I urge everyone: if you don’t understand what we’re doing, or why we’re doing it, just ask. If you’re unsure whether we are ok with something, just ask. Talk with us about what’s going on, find ways with us that we can understand each other and let us know that you’re ok with us being the way we are. Because I get especially nervous and anxious if I know that something that I have to do because my autism demands it for a certain reason, if I know that the person will judge me because of it. That will make me especially uncomfortable to be around that person, which will make my reactions jerky and awkward, which makes everything worse. But if I know that you can deal with me being different sometimes, or that I have to do some things in a certain way, then I can relax, and I won’t have nearly so much problems. So make us feel at ease, and any communication with us will go a lot easier and life for us will be easier. Of course I can’t speak for everyone, but I felt pretty safe saying that ;).