Isn’t autism a mental thing?

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.
brain_autismMost 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 ;).

There I said it

This school year has so far provided me with more drama then I could ever want. It started with me getting incredibly sick and having to abandon my hope of graduating at the end of this year. I’m still getting better from that. My body isn’t what it used to be and I sometimes feel as if it’s not my body. Sometimes it feels as though there is me, my soul, my thoughts, my love and all my creativity and then there’s this vessel created out of meat that puts a boundary around everything. That it’s my body that keeps me from doing what I want and also being who I want to be, that it’s my body that’s holding my back.

But that’s not what this blog is going to be about. A lot of my friends, and I think at least all the people who read what I put on facebook, already know what I’m going to tell. What they don’t know is how I feel about it. Talking about feelings is not something that I always like to do, mostly because when I’m talking I can’t put it in the right words, or someone interrupts me or the conversation goes somewhere completely different. I usually don’t mind, but sometimes I need to really feel my feelings and be able to express them. That’s part of the reason that I created this blog in the first place.

Ever since I’ve been little I’ve known that I didn’t fit in. I acted differently and I certainly thought differently from the other people around me. I have a certain naïvety about me that some find endearing and others might find annoying. I think it sort of keeps me safe, safe from becoming cynical, safe from becoming hateful. I have a theory that says that the people who genetically don’t fit in (like people with the Syndrome of Down or some other kind of disability that’s usually mental but physical sometimes as well) they have that naïvety in their genes to protect them from at least some of the negative feelings that others get towards them. Kids and small animals are cute and endearing to protect them from the world so that they can grow up. Well apparently so do people with disabilities, we have our own way of protecting ourselves to make sure that we can stay around and not go extinct.

Now you’re probably wondering what my disability is. At the start of this school year I talked with my GP about getting myself tested. We managed to make that happen and the day before my Christmas holiday I got the results.

I have a form of Autism. There I said it.

A friend of mine told me to take care of who I told this too. I am an incredibly honest person who doesn’t easily hide. So I asked him why. He told me that people might react negatively on it because of the shooting that the autistic boy had done in America. This week I heard some other news that might make people look at me negatively, because another kid who has autism attacked someone. People tried to find reasons why they attacked and apparently the best reason they found was that they have autism. So people be aware of me! Some day I might crack and shoot or attack everyone in my vicinity because I am autistic.

I will honestly hit you if you ever think that that could be true. Yes I am autistic and yes in a way you could say that I can be violent because I’m sadistic and I like sm. There are always more reasons why someone attacks someone else. The same way that it’s ridiculous that people believe that because someone likes violent games that they are more prone to become violent. That’s not true, someone becomes violent out of a sense of being/feeling powerless and resorts to a way that makes them feel in control of something. At least that’s what I think. Ultimately someone attacks because they break down, they may have broken down long before they actually attack, but at some point they have broken down.

I am in a group with other people who have also only recently found out that they have a form of autism. Together we learn stuff about stress control and such. Most of the time I don’t really care or feel anything really about me being autistic. The same way that most of the time I don’t really care or feel anything about my stupid thyroid gland not acting the way it should. But everyday I have to live with it. Everyday I have to make choices and do things in a certain way to make myself able to do things. I have to watch out with caffeine and after I’ve taken my medication at night(which I have to do on an empty stomach) I can’t eat anything for another half hour. I love to snack in bed or with a movie, but I can’t do that unless I follow this order.

With autism it’s pretty much the same thing. My brain is wired in such way that I can’t always do things the way I want to because either my brain or my body (which is of course also wired to my brain) is going to protest in one way or another. So sometimes I have to do things in a very specific way to make them work for me. Like my headphones. I can’t deal with normal earplugs because my ears hurt like crazy(but that’s normal cause your ears need to adapt. Well, my ears don’t adapt). Some say that your body has to adapt, well I have to adapt to my body. Maybe that’s why I sometimes don’t feel like it’s really my body, because for the rest of my life I am going to have to listen to the rules that it gives me and I can’t give it any of my own. For the rest of my life I am going to have to find ways to work around the boundaries and limits that my body sets me.

My boyfriend sometimes thinks that I’m weak or a wuss or squeamish. Maybe I am. But I can only act with what I feel. My body is sometimes so incredibly sensitive that I just want to scream, or hurt myself to make it duller. I am sensitive to sound and my ears will hurt if someone is screaming or yelling (and people don’t always have to raise their voice to do that I have found out). I have installed a white noise machine in my room so that I can hopefully sleep better because I won’t constantly be woken up by sudden sounds like birds, cars or animals (or my boyfriend’s snoring). I am sensitive to light, semi darkness seems to be the best all around because my eyes have to sort of ‘warm up’ to be able to withstand proper light. I am sensitive to touch. Tinkling hurts. Sometimes it feels like someone only has to point to my body to make it hurt. How in the hell is that ever conducive to any form of a sexual life? I mean everything about basically hurts so why would I even try to figure it out?

The most difficult part about it is that people don’t, or can’t, always understand. And I can’t blame em because I don’t, or can’t, always understand what’s going on or why sometimes isn’t working now.

Only very recently have a gotten to know an amazing woman. Thirza Meta. I’ve reviewed some of her books her and I’m currently still reading the last one. She’s married and she has a kid. A wonderful kid by the way who I’ve met by now. She has an illness which she calls the ‘F-monster’ because it attacks her body in such a way that every day she has to battle to even be able to do the smallest things. She has to live her life according to very set rules and if she doesn’t listen to them she’s going to pay for it that day, the next day or a day when it’s very unfortunate. She also isn’t always met with understanding. It’s sort of understandable, because people can’t see from the outside what’s going on on the inside.

With cancer, or Syndrome of Down, or some of the other more visible disabilities and illnesses people can see what’s going on. They feel empathy because they can see that something’s wrong. While people with cancer or Syndrome of Down might actually feel better then someone like Thirza. So people will feel empathy towards someone who doesn’t even want it because they can see that they’re not up to par. I’m not saying that this counts for everyone who has a serious illness, disease or disability. But the truth is that you can’t see what is going on on the inside of someone and you shouldn’t just be emphatic to people that can show it on the outside. People should just be emphatic to everyone.

Unfortunately we don’t live in that happy world. But I can at least ask that of those people who read my blog, who know me, and especially those who also know Thirza. Spread love and care around you how and whenever you can, because bringing a smile to someone’s face, especially when they least expect it, is the most beautiful thing that you can ever do. You can’t make everyone happy, but you can be respectful to those that you can’t make happy, and make yourself happy by knowing that you do whatever you can. Because of my disability I don’t always do things the right way, or understand things the right way. But I have my own moral compass that I follow and will keep following.

So my dear friends and family. Know that I may not always say the right words, at the right time, but I love you all. I may not understand you, just as you may not understand me, but I promise that I’ll always try.

 

 

Studying, cancer, leukaemia and other life-threatening diseases…

I can really make cheerful titles, can’t I?

Those on my facebook know that today I went to the movies on my own, a Dutch(not to be confused with Danish ;)) film came out that I really wanted to see. When no one wanted to come with, I went on my own. The movie was called ‘Achtste groepers huilen niet’ and it was originally a children’s book written by the amazing Jacques Vriens (in English it translates to ‘Cool kids don’t cry’).

Although I do not want to give too many spoilers for those people who still want to see it and haven’t read the book, I do want to tell a little bit about it and the writer who wrote it. Jacques Vriens is a really great writer of children’s books. There are always very cheerful drawings in his books and even though he often teaches quite heavy stuff in his stories, the stories themselves aren’t heavy. He is one of the most read Dutch writers and, even when I had long outgrown the age when children normally read his stories, I love reading his stories.

The novel on which the movie was based is about this girl Akkie and she is in group 8, the final year of primary school. She is a really active kid, very cheerful, the life of the class and absolutely loves soccer. Akkie gets leukaemia. It rocks her world. The doctor uses an amazingly child friendly way to explain to her what’s going on. The story is then about how her disease progresses and how her various classmates and friends deal with it. She goes completely bald(which is fairly normal with this disease) and stays that way the rest of the movie (in the novel I think she actually started getting back in the end, at least someone did). Being in the last year of primary school means that there are a number of events on the program that she still wants to participate in, such as the cito test (standard Dutch test for the last year of primary school to see which level of education a child can master in secondary school. Sort of an early IQ-test), school camp, the school musical (although this doesn’t come up in the movie) and the soccer tournament. So Akkie has to battle the disease and restrain herself so that she is allowed and able to participate in these. The first one is school camp. Everything seems fine, but after she pushed herself too far on the first day(or the first real day) she has to rest the next morning and is late in joining the others. When she finally does she keels over after a few seconds. After that she doesn’t leave the hospital anymore.

Having read the book I knew that she was going to die. I also knew that she was going to find love before she does. I knew what was coming and somehow it got me harder. I was really glad to be on my own actually, because it meant that I didn’t have to restrain myself because of my company. It also meant that I had to leave the cinema really fast after the movie before I broke down right then and there. It was done really beautifully, the dieing scene as well. In the book it was written that she has a dream that you have with her and in the movie the camera sort of became the astral body of Akkie that floated out and went outside. It was just really beautiful.

It’s not the first time I’ve seen a movie about a child battling leukaemia, and dieing from it, ‘My sister’s keeper’ also has that. It’s not even my first time encountering someone dieing from a cancer-type disease. My only grandfather (well, the only one I knew because the other one was already dead when I was born) died in group/year 5 of primary school(you start in year 1 at age 5 or 6). I always forget of which type he exactly died, it was either lung, kidney or perhaps liver. Somewhere along those lines. It’s a really long time ago and I can’t even remember that much from that whole school year.

He was the only grandfather I had. Only the year before I had to go to a different primary school every week for communion lessons. I’m brought up Catholic so when I arrived at that certain age I had to do my communion and my public primary school didn’t give the lessons necessary with it. So, every week my grandfather would come and pick me up and would bring me to the other school where I, and my niece of the same age, received the necessary lessons and practise. I can still remember one time when we couldn’t find the class. The classroom was completely empty. We didn’t hear anything, there wasn’t a note. So we walked to the church, that was opposite the school and where the communion would be held, but they weren’t there either. After much walking between the two places (and getting a bit panicked) the class finally emerged. They had been doing some gym exercises upstairs. That year was basically my year with grandpa. He made me feel like it was a good, positive thing to be a little girl. Like the little princess every (grand)daughter wants to be.

The next year he got ill. Had to go to the hospital. When it became clear that he wasn’t getting better anymore they let him go home (that information didn’t get into my head until some years after, mind you), so that he could die at home. A nurse would come by a few times a week to take care of his medicines and stuff. I gave him a little stuffed bunny, for courage and comfort. Every time I came by, and the nurse had taken the bunny of his bed, I would pick it up and place it right back. Because grandpa needed that bunny to get better. I didn’t get to see him dead. My brother M was asked to read something at the funeral I believe, but he didn’t want to do it(or he couldn’t) and I volunteered to do it. I think. I don’t remember precisely. It hadn’t sunken in yet. I was happy and cheery, didn’t see the seriousness of the adults for anything more than just normal seriousness. My family is serious by nature so it wasn’t all that odd.

Then the funeral day came. I wore my favourite dress of that time, it was really a Christmas dress it being red and green but I loved it and it was proper and looked nice enough for the occasion. All through the ceremony my grandmother and mother cried, I think my two nieces, who were younger, did too. I didn’t. It was just church. Grandpa had died, but the meaning of it hadn’t come in yet. At the end of the service the family could leave, and say goodbye for the last time, first. I just followed my grandmother and did what she did. She sought comfort and support from the casket. It was one of the last times I saw her so broken. So I touched the casket as well. Then the reception came and everyone was sitting around the table, drinking something and eating cake I guess. I don’t know what I was drinking. Some sort of soda I presume. Then it hit me. Grandpa wasn’t going to join us anymore. He was, well, dead. That’s when I started crying.

I’ve missed my grandfather ever since.

Now I have to find some sort of clever linking device to the third topic I wanted to talk about, but unfortunately I can’t think of any nice ones that aren’t go to be abrupt. So this will have to do.

There are probably going to be people who will think that my next bit is going to be a bit dramatic (to say the least), and maybe it is. Sometimes, I just like to be dramatic, take it a bit over the top. It can help me get things in perspective, weirdly enough. By making it bigger than it is, you can also enlarge the problem areas and see what’s bothering you. And then sometimes, of course, it is just fun to be a bit dramatic and make people sigh.

Anyways. Studying isn’t always fun and cheerful and easy for everyone. It sort of has been for me. But it also wasn’t. I used to be a very big Hermione Granger and get all huffy on people who didn’t pay attention in class or acted in a way I found really stupid. I learned that it was important to get a good job to pay for bills and so you can get a good house. For a good job, you need to do well in your studies. One brother appeared to have been a failure in that area, the other was raised to the post of half-god and the third… well, let’s just say that he is who he is and leave it at that. Being who I am, it wasn’t hard to figure out that I have a good set of brains. The problem with that was that people, parents usually, more or less expected you to use them well, get good grades and get to a good level in secondary school. I had enough problems during my primary school years that I didn’t want that pressure, I still don’t. So in the final year I did the cito test, scored reasonably well and my teacher asked me which level I wanted to do. I chose the lowest of the three and although I could do the middle one as well he gave me the advice I wanted.

Life didn’t get any easier in secondary school. It actually got worse. But at least I had my studies I could focus on, and my readings. That’s exactly what I did. After secondary school I went to the appropriate follow up to study for teacher’s assistant. I failed my internship. That was my first failure. I did all sorts of testing to see what I could do next. It came out that basically everything I liked was college or higher(we have college and university and there is a difference in degree and difficulty). So I had to go back to secondary school to get the appropriate diploma.

Let’s just keep it to that life still wasn’t getting any easier. In a way perhaps it did, because I could avoid them more easily and find more places where I could be alone. I didn’t have to do any re-sits and passed in one go. I applied for ‘Writing for Performance’ in Utrecht but I didn’t pass the selection weekend. Instead I went to Maastricht to study translating. I absolutely failed in the French part of my studies. So I had to quit after the first half of the year. I applied to ‘Writing for Performance’ again, and again didn’t get through the selection weekend. It hit me harder the second time around. But I picked myself up and went to Tilburg to study at the English teacher training college. I completely passed the first year, and got my Propedeuse, in one year (I had to do three re-sits though). The second year was moving along nicely enough until my second internship didn’t go so well. I talked with my internship supervisors and in the end decided that this wasn’t the best place for me. But with my Propedeuse I could get into university. I did some more testing and then decided to finally study English at Utrecht University.

For some people studying, even when you have to do re-sits or take a course again, feels like a breeze. It’s the best years of their lives. I’m certainly having the best years of mine, socially speaking. But the studying part of it? As I said before, it may sound dramatic, but I can really see a comparison to cancer and other such nice diseases. For me it’s really a battle. A constant battle. Last year it was a battle that I was losing. But I didn’t want to give up. So I fought back. This year… the battle hasn’t stopped. I don’t feel as if I’m losing it, as much as I did last year. But it certainly also doesn’t feel as if I’m winning it.

I’m seeing a therapist, once a week when I’m lucky and our schedules match. I already know that I’m having troubles with performance anxiety. A few weeks back, however, my therapist told me something that made me wish it was just performance anxiety. According to her, and I really trust her, there is a very real sense that I might be battling a social anxiety. How does that have to do with performing and your studies you ask? Well, for the precise details you’ll just have to look it up. This blog is already long enough. What it comes down to, is that performance anxiety usually only has to do with exams and other things that require someone to perform(and yes, being on stage or in front of others can be part of that). The difference with social anxiety is that the second one takes that anxiety and pulls it over a larger area. It’s not just doing well in school, or at work, but also in my social life and every other aspect of what I do. And don’t do of course.

It’s a disease that I’ll at least have to battle for a really long time. Just like cancer. And just like leukaemia there are chances that I’ll ‘get better’. That I’ll grow past it. But what I’m really battling, isn’t so much to completely lose it and get it out of my system, as that I’m battling to make sure that it doesn’t take over my entire life. That I’ll get so frightened that I don’t dare to do anything anymore, too scared about everything. I’ve lived like that. I wasn’t happy. I’m putting that behind me and try to live more of a life that I can be happy with and where I do things that I love. Just like Akkie still tries to live the life of a normal girl her age, go on school camp, play soccer, giggle with girls. I’m blooming, but it’s costing me.