My Friday Book: “Can you understand me? My Life, My Thoughts, My Autism/Asperger’s Syndrome”

Can you understand Sofie, because she can not understand you?!

Can you understand Sofie, because she can not understand you?!

A tiny little book, written by an 11-year-old Danish girl suffering from Autism or Asperger’s, difficult to say but I suspect the latter. On the other hand, they are doing away with the latter diagnosis, since not a single person has all the same symptoms. Which means that it is difficult to understand why these people do and act the way they do, all of them being different.

I liked this little book a lot and as soon as the Autism society is back from their vacation, I will order it from them, as well as two other books which habilitation recommended and loaned me. They are good books to keep at home, for refreshing one’s memory and for letting other people read. I have no idea if this book has been translated? It says that it has, but is it still in print and how good was the translation. In case you are too lazy to send for your own copy or can’t get hold of it… Here is my translation of the book:

“I have a physical disability. It is called autism or Asperger’s syndrome. You can’t see it from the outside. But I was born with it and can’t help having it. What it means is, that I have a difficult time understanding others, since they do not think the way I do. I would like to help others. Sometimes I need help myself. I would like for others to understand what my life is like, so they can understand me.

I like when everything stays the same way every day. Every morning I stick to my remember-to-do-list, which sits on the fridge. Then I know what I am supposed to do. I easily get confused, if I don’t know what I am supposed to do, or if I am supposed to do new things, which I have not done before. I really need things to be explained to me in advance.

I watch the children’s programs on TV every afternoon at 17:00. But I have a difficult time learning the clock. If my mother forgets telling me that it is 17:00, and I miss the cartoons, I get very angry. If it was just a film about humans, which I missed, then I do not get angry. I have a note in the living room, which has pictures and text, explaining how the remote control works. I have tried to learn how it works for years. I can get very angry, when I can not do things as easily, as other children can.

I can not always find the right words for things and it makes me very vexed and sad. I have a difficult time remembering the names of people and things. It is very difficult to find the words for how things are. I find it very difficult to explain how I feel. I prefer short conversations.

Yes, what are strawberries called in Swedish? The options become very funny, when it is supposed to be "Jordgubbar". But it is hardly amusing to the child when the person opposite looks like a question mark or gets a troubled look.

Yes, what are strawberries called in Swedish? The options become very funny, when it is supposed to be “Jordgubbar”. But it is hardly amusing to the child when the person opposite looks like a question mark or gets a troubled look.

I can not remember the names of my classmates and there are some teachers whom I don’t know the names for either. I almost know all the names for every cartoon figure, because they are easier to remember. Mum says that I speak differently than others. Sometimes I use lines from films and cartoons, but I am not aware of doing so. Sometimes my mum laughs at me which makes me angry. My mum says she is not laughing at me but that she laughs at what I just said. She means this in a loving way. But I feel stupid when others laugh. My mum also says that I talk like an adult. This means that I sometimes sound like I want to decide over others and educate them. I feel that I talk the same all the time.

I get confused if one asks me to do several things at the same time. I prefer to do one thing at a time. If the teachers say many things at once, then I will sit and draw till they come and tell me what we are supposed to do. When too many things are happening at once, I get stressed out. When it is too noisy, I just walk out of the classroom.

I think it is difficult to know which side to pass people on the street, when they come walking towards me. I expect them to walk straight, but they do not always do that. Mum says that it is because people get confused and irritated when they can not read any body language from me. I don’t use it. And I do not see or notice body language. Mum also says that people can not see what I want because I do not use that many facial expressions. Others think I am angry or sad, when I just feel normal. I can not see if people are lying or if they are joking. I think everything they tell me is true. I also find it very difficult to understand jokes. It helps me a lot, if people tell me exactly the way things really are. They should not use a lot of confusing words and expressions. You should only use words that mean exactly what you want to say.

I have quite a bit of help in school. I am happy about that. While I am good at languages, math, biology and technology are very difficult subjects. When the other girls tell me that I am good at reading and writing and that I ought to become an author, I become very happy. The best teacher in school is Ida. I feel secure with her and she is kind towards me. Ida always have time for me. Ida is calm and she can explain things so that I understand them. If I cry and am sad about something, she helps me. Before, when I did not have an assistant, I could not be part of gym class. I got confused the entire time. I like gym class when my assistant is there.

My mum says that I am stubborn since I am not goood at changing my mind. Because of this I can not work in a group. If we work on a project in school or do team work, then the assistant has to be there. I love going to the library and swimming pool. I love music. I like Elvis the most and Peruvian pan flute music.

I have a difficult time joining the other children in school. I do not understand the rules in their games. For the most part they ignore me. Then I get sad and ignore them. Some of them join forces and pick on someone. That someone is for the most part me. Then I feel like vomiting. It is difficult to understand the other children, because to me, they seem unnatural. At school it is mostly the younger children who want to play with me. Sometimes I read to them. I would like to play with the children in my class. I wish they would ask me to join them some time. I do not know how to ask them in order for them to say yes. I keep to myself for the most part. The few times I get to play with some of the girls in the class, I feel very happy.

It is difficult for me to be with many people at the same time. It works better with just one person at a time. I prefer children who are calm and peaceful. Most of the time, it doesn’t matter that other children are noisy. Only when I read. Then I get angry and scream in order to get peace and quiet. There is one girl in school, Lisa, whom I play with sometimes. She is a year older. The others in her class, finds her weird, but I find her normal and very kind. Lisa is my best friend.

I wish others would be like Lisa and me. I don’t like when people swear and speak ill of each other. Lisa and I do not do that. I think a lot about how the other children act. The other girls are interested in the boys because they want them for boyfriends. I am not interested in boys. Only as playmates. Some of the girls wear bras, even though they do not need them. I think that is ridiculous. The girls keep diaries. I do too. But there is also one boy who keeps a diary. He is not like the other boys. He is calmer and doesn’t swear as much as the others do. Some girls and boys are not like the other girls and boys. That is difficult to understand.

I often get confused about my schedule. I have a deal with my mum, to phone her when school is out. I always carry my mobile phone. Then my mum can tell me if I am phoning too early. It has happened that the others have walked off to music, sewing class or wood shop, without me noticing. Then I think school is out, pack my things and phone mum. Then mum tells me that she will come and fetch me, or she will tell me that I have forgot to go to a lesson with the others, which is not held in our classroom. Some of the girls sometimes help me to go to the right place. I like that.

I love reading so I am at the library all the time. I read cartoons as often as I can. I think I have read all the cartoons they have at the school library. I also read a lot of books. For the most part, I love adventure books like Harry Potter. Words like brain, slime and intestines make me nauseous. At the doctor’s, there is a model with all body parts. I can’t look at that, since it makes me feel like I am going to vomit. I can’t stand the thought of us having those things inside of us.

I think it is very strange that it says “door’s open” at the school’s doctor’s office, when the door is closed. One day, my mum said that the door closed itself and I saw in my mind the door having hands, closing itself, but what it meant was that it just blew shut. I get angry with myself when I do not understand things. I really appreciate when people tell me things so that I can understand them. One day one of the girls in the class told me “I was only joking Sofie. You can handle it!”. She smiled and laughed kindly at the same time. It meant that she was not teasing. It helped me that she said what she did.

I am not good out in traffic. I can’t read a map and I do not know which way to walk. I do not like difficult things and when things are hard to solve. I also have to be very careful when it comes to people I do not know. I can’t tell if people want to harm me or not and that can be dangerous. My mum takes me to school and fetches me, every day. She has told me that when I am in sixth grade, perhaps I will be able to take the bus on my own.

I sometimes misinterpret things. Mum and I was shopping and I saw a little purse which I wanted. Mum answered my request in such a way that I thought she had agreed to buying it for me. I put it on the counter with all the other things we were buying. Mum did not notice until we had paid and left the shop. She had not meant for me to get it after all and I felt very sad and cried, since I had misunderstood her. My mum felt sorry for me, and went and bought something small for my brother as well, of equal value. As to be fair. Everything was fine. I really want things to be fair and that everyone get an equal amount. I become very sad when I misunderstand or others misunderstand me.

When others say things wrong, I correct them. My mum has told me that it is not nice to correct adults. But I do not like it when people do the wrong thing. What I love the most is to be at home and sit curled up in an armchair, reading. It is extra nice if my cat Bamse, is there with me, as well and if I have something to eat and drink beside me. I feel the most safe and secure at home. I have a happy family. We have a swing in the living room that one can swirl around on. I can swirl the fastest, since I do not get dizzy.

I have a very heavy quilt. It is full of balls. I have it because my skin does not feel things the way others feel. The balls make my skin feel what it should feel. Before I received my ball quilt, I could not stand if people sat too close to me. Or if someone touched me before I was prepared for it. It happened that I hit people if they touched me, because it felt so gross. I like soft clothes, since you don’t feel that you are wearing them. There are many clothes which irritate your skin. I can also get very irritated at strong light and strong smells. Some sounds and smells make me hurt inside. Then I try to get away so I can concentrate again.

I love being in the forest and on the beach. I find nature beautiful and I hate little grey houses. There are too many houses in the towns. I love beautiful things and have a small collection of treasures. I have chosen some beautiful white furniture for my room. It feels good when things are in order and pretty.

Twice a year, my mum takes me to a camp. There we meet families with children who also have autism. I have many friends at these camps. I understand them and they understand me, and for the most part we play well together. Noone teases you. We are served nice food and homemade cakes every day. Last time, we made a film and I played a grumpy old lady. That was fun. I get very sad when it is time to leave. Then I look forward to the next camp.

I often dream that I am in my own world. Sometimes I visit my grandmother. She lets me bathe in a bathtub. Then I dream of Greece. At my nan’s and granddad’s, there is a cupboard with candy for the children. That is nice. I would like to live in their little white house when I grow up.

The best thing about my cat Bamse is that he is so calm and peaceful. Bamse is almost my best friend. I find it more easy to understand cats than humans. I would like to run a cat pension when I grow up. But you can probably not support yourself on that. I look forward to getting old and to retire. Then I want to live in the countryside, in a white house, surrounded by cats. I will be home every day looking after all my cats.

Sometimes I wish I did not have autism. But I can still like myself the way I am. I wish others could like me just the way I am, as well. I so much wish that the others in my class could teach me to understand them. ”

My first thoughts after or while reading this book, was that life is not fair. That it is a very unfair thing to be born with, this thing called autism. Because us human beings are so dependent on other human beings. For our wellbeing. For companionship. In order to learn things. To feel safe. For everything really. We are flock animals. But these people who are born with autism, they are basically made to feel unwanted. They do not fit in since they do not know the human code and can’t fit in to the model we have built up for centuries and millenniums. They have to live and function in an alien world and spend their entire life, trying to understand US. Trying to copy us. And what says that we are right and they are wrong?

I felt sad when I read this book, since this is what my boys are struggling with and in many ways, are probably feeling, even though they do not have the IQ which Sofie has, to say so. I know that “Boo” has been bullied terribly at school for being so different. Neither of my three autistic children, I think, would be classified as having Asperger’s since none of them have really normal or higher than normal IQ. And all three of them have had language problems and still do. But Johannes does get fixated with one thing and can’t handle other things around him. “Gubby” has certain likes, but he can like several things at the same time so…

The one, who really needs to know what is going to happen and who gets distressed when he has to do new things or not planned things, is “Gubby”. At the same time, the worse which happens, is him flaxing about and doing his seal impersonation. And him showing us that he is distressed, by hugging us extra much and asking the same question over and over. “Boo” shows it by being naughty and hitting people. So he shows signs of this classic symptom as well, but more disguised, in an unacceptable mannerism. We need to get in to a routine of trying to prepare both boys for things, and not just “Gubby”.

“Boo” knows how to handle the remote control but does get very upset when he misses a program on TV. I have shown “Gubby” what to do a thousand of times, when the TV says it will shut itself down in 4 minutes, because I has been on the same channel too long. He gets equally stressed out every time and never remembers which remote control goes to which device and how to push the buttons.

When it comes to language, “Gubby” of course comes up with his own names for things, since he doesn’t remember the correct ones or did not know them in the first place. And he did not know the names of his classmates at daycare/pre-school. He did eventually learn the teachers’ names though, while for the first year or more, he called them all Eva, after his favourite teacher. The boys do not really use sentences from films and cartoons, but it can happen that “Gubby” does so. But not in a sentence or conversation really. Just because he likes to say this or that particular sentence. Like “Sniff my butt” from “Scooby Doo”. And mostly to himself, not to others. But I do laugh at some of his sayings and he wonders why. Like Sofie’s mother has to explain why she laughs at her daughter, I have to explain to “Gubby” every time I laugh. Some of the things are so clever or profound and then I laugh because he has beaten the world and showed that he has intelligence after all. And some things make me laugh because he looks so cute saying them or it sounds so cute coming from him or most of all, I laugh because he is the cutest thing there is and I laugh because I love him so very much and has just been reminded of that fact. He is the most precious child there is. I love him “to the moon and back”!

Sofie’s mum says that Sofie sometimes speaks like an adult, like she tries to chastise people or educate them and bossing them around. That is what “Boo” does and EVERYONE objects to it and gets angry with him for it. The book explains that Sofie does not even notice that she does this and I fear that “Boo” doesn’t know either. His voice even changes, to a deeper, scolding voice that is not that of a child.

Johannes just shut down the machinery when we asked him to do things. He could not handle more than one instruction at a time and needed to be told exactly what to do since he could not think by himself at all. No wonder the military told him at the recruiting office that he was an idiot and should get out of there. He can’t think for himself at all. “Boo” and “Gubby” both need simple instructions and one at a time. And like I try to tell people around them, do not use unnecessary words, only the words needed to instruct and get the job done. Even if it sounds robot like and goes against a normal person’s want and need for using  their full vocabulary. This goes for my child with ADHD as well. He needs the same sort of language and instructions! He also needs to be prepared in advance and routine and order.  In many ways, ADHD is just another form of autism! The similarities are too many to overlook.

When things got too much in school for Johannes or here at home, he just escaped in to his own nothing box. He shut down the machinery. “Boo” walks out and “Gubby” flaxes around. They all seem to find what works for them. Their own escape.

The facial expression and body language bit must be the most difficult for them all. For the most part, we humans do not say how we feel, we signal to each other with our bodies instead. One of the reasons being that it is not proper socially to reveal how you really feel. One of the things I hated about living in the US, was that I felt that people were so insincere. They asked me “hi, how are you doing?” but they did not really want to know how I was doing. If I started to say “I am having a tough day today or I feel sad”, they would grow impatient with me and show in their body language that they did not REALLY want to know how I was doing. It is just a salutation phrase that means nothing. In that respect I guess I am autistic in my thinking because I feel that you should not ask “how are you doing” if you are not interested in the person’s feelings or well-being. Find another salutation phrase instead. Salve! Greetings my friend! Pax vobiscum! You choose.

When Johannes came home from his mission in Germany, which had lasted 25 months, he was on collision course with everybody again. Nothing had changed. He asked me one day, “What am I doing wrong? How can I get along better with my siblings?” I tried to tell him that he must accept that a child behaves like a child. That he must allow them to be children. That they do make noise. That they do make a mess. That he had to try to see things their way and not just his own way. I was talking to a wall of course, which I had not understood by then. I had no idea that all he had shown me, all the behaviour I had seen since the day I first held him, fresh from my womb, was that of an autistic person. He can not read other people at all, he can only see the world from his own viewpoint, so all my advice was pointless. We ended up being scared of him and counting the days till he moved out. His selfish behaviour alienated us all and even though he tried to be more social and caring, after his move, it did not go very far. If nothing else, his eccentricities were fuelled away from family, who kept a check on them, I think. He can not read people at all now, nor follow the social codes. He is running his own race and he is too old to be told what to do, by his mother or father.

His brothers are in another situation entirely since we know what they have from an early age, and can work with them. “Gubby” laughs when someone falls or hurts themselves. It offends the hurt person, but it does not help to yell at him that he is being rude. According to books, he laughs because he thinks it looks funny. And he can not imagine what the other person feels. That is up to me as interpreter of social situations, to explain to him. I must explain the hurt, the person is feeling and draw parallels to himself, so he can understand. The same thing goes for “Boo”. That is why both boys need assistants in school and constant supervision when being around other human beings. They have to have a mediator, who also acts as an interpreter of the world around them, a world they do not understand, thanks to their brain damage. I have my job cut out for me, for the rest of my life time.

Facial expressions. Johannes have none except two, grumpy face and a smile now and then, but as a grown up he has grown long hair and beard in order to hide his face from the world. Everyone has always determined that he is angry. Always angry. But I do not think that he always was. On the other hand, I can understand that his mission companions did not want to walk around with him, but behind or in front of him. They did not understand him, nor his behaviour, and probably thought he was constantly angry about something. “Boo” is all smiles really. Too much smiles sometimes. And “Gubby” will imitate facial expressions from cartoons and minecraft, which confuses people. I have to tell both boys to alter their faces when the expression does not fit the occasion or when I see people getting restless by it.

I love satire and good jokes. But my boys understand none of it, so we all have to think carefully about what we say. They take everything literally and their sister E. who use irony in everything she says, has a lot to learn. Even if it goes against the way you usually speak to people, friends and family, you have to alter your speech when it comes to autistic brothers and people. Joking, as fun as it is for the person pulling the leg, is just out of the question. From you is expected the truth and nothing but the truth and told in a dry, boring manner. Be like God, don’t waste your words, only use as few or many as you really need.

These children and people do not change their mind. Not even when convinced that they are wrong. They ARE stubbornness itself. It is not just “Boo’s” red hair that does it. “Gubby” will listen to reason and might go along because he is left with no other alternative, but he will not change his mind about things . “Boo” will not even go along for the sake of it, nor did Johannes. In his case, we thought it was because he was born a Capricorn. Known for being stubborn. But it was more than a horoscope sign! Makes me wonder if my mum is autistic? Unreasonable stubbornness has always been her trademark. At the moment she refuses to move to an old people’s home, even though she is afraid of the dark, don’t go to bed but sleeps in an arm-chair and can’t take care of her hygiene at all. She needs care but refuses it. And all the years when we tried to tell her to change car, since her car was a regular money pit, a bucket with a big hole in it. She knew best and spent thousands after thousands on a car that should have been scrapped years before the mechanic ordered her to get rid of it. And what about this thing of living 380 kilometers from family, just because it is cheap to live in the house. Surrounded by strangers, that is better, than living closer to old friends and family? It scares me to think the thought, but I wonder if my mum has not been autistic all along. Perhaps not 100% but enough to make mine and her own life a hell.

I have always thought that “Gubby” did not mind that other children excluded him from their play and games. He seemed happy just doing his own thing and flaxing about. But the book says that she wanted to be part, but is ignored and that it hurts her. This last year, “”Gubby” has matured and has wanted to be part. He met me crying, the last two months of the school year, saying that he was not allowed to be part. And it has made my heart ache for him, because he is now becoming aware of that other children do not want to play with him. I did not want him to come to that realization. He was happy before when he did not know. But I understand them. He does not understand the rules of the game or the play. Same goes for “Boo”. Not welcome and him acting out destroying for the others, just like Johannes did. And the children ganging up on him just like they did with Johannes. Born outsiders. Never welcome. Unless one can find someone like oneself or someone younger to hang out with. That is what has worked for “Boo”. The younger children accepted him in school and now he is starting a grade lower than the one he was supposed to have been in. Autistic children, contrary to Asperger’s, are on a level younger than they really are. Question is always how far behind they are. “Gubby” turns seven this autumn but is on the level of a three-four-year-old.

Visiting the Waldorf school in June, was good for “Boo”, but showed that he can only get to know one person at a time and can only play with one person at a time as well. It was so clear to us all. His future teacher did say that the autistic boy she has taught before, was the same, but through his nine years with her, he did get better and better at including more people in to his life. Rome was not built-in one day, so there is hope out there.

In a way these children are mentally retarded when it comes to the social sense, which they lack. They constantly show poor judgement and when it comes to trusting other people, it gets really dangerous. Mean children have got “Boo” to do really stupid and mean and bad things, him not even understanding that it was wrong. There are always bad people out there, ready to prey on the lesser knowing. I do no know how to protect my children from this. Especially “Gubby” who thinks well of everyone. He gets devastated when he finds out that he has done something wrong and sadly I must say, that it is often “Boo” who has got him to do the thing in the first place, since he never is able to think up those things himself. He is like an innocent angel and I worry myself sick about people taking advantage of that. At the same time, I worry about “Boo”, because he can think up bad things himself and he can be told to do things by manipulating people, who can threaten him with things like “or you will not get to go to my Birthday party” or “you will not get any candy…”. People soon find out his weaknesses and use that.

“Boo” is very fair. He shares. Just like Sofie wants things done. And he also always misunderstand that he has been promised this and that. Wishful thinking would be most people’s reaction or thoughts. Selective hearing says others. Hearing what he wants to hear. Yes, I think so, because he can not see why there might be a no to some things. Even when one explains why not. Like I do not have the money. You can’t eat that because it will make you fat in the long run. No we do not have the time to go there. He explodes every time there is a no and says that his dad promised. And I can see why. Because his father has not learned the skill of speaking clearly to his children, so that there will be no misunderstandings. He was raised with clouded messages and his own mother misunderstood him so many times, it made me furious. He is too scared to be honest and lay down the law in clear, non-mistaken language. I am the opposite. There is no way to misunderstand my no or yes. I am a very clear language person. Sure it hurts some people’s feelings, but my father raised me to be that way.

Both boys will correct you and others if you do something wrong. “Gubby” has an eyesight like a hawk. He notices everything, nothing escapes him and he will point it out. No barriers there. But he does things in a cute way and not in an abrasive manner, the way “Boo” does it. He creates enemies, since he points out people’s wrongdoings in an accusative tone, which offend most. Especially adults who don’t like their shortcomings pointed out to them. They keep on forgetting that he is ONLY a child, and how to speak to a child, and they forget that he is autistic. He should not have to have a sign around his neck with the information.

The topic of the senses can not be ignored. My youngest sons do not have a ball quilt, but their brother with ADHD has a chain quilt, since he liked that better, than the noise from the balls, moving in the quilt. But his brothers are very sensitive to sound, light, touch of people and clothing. “Boo” is like Sofie in the book, he likes to be prepared for touch. If he is upset, he screams that it hurts and that you are trying to kill him, if you barely touch him. At the same time, he wants “Gubby” to be available for a hug at any time, and “Gubby” is restrictive with his hugs and how much he allows. If me and E. both ask for hugs at the same time, he will hug me and tell her that that is enough for now. So his affection can be rationed. Both boys love hugging and kissing though which is where they differ from Johannes who could not stand to be touched at all from day 1. With all these boys, I have had to be careful with what kind of clothes I have bought for them. Johannes not being able to feel temperature. Wearing long johns in summer. “Boo” going out without a jacket in the middle of winter, not understanding that this is not alright. And “Gubby” only liking certain fabrics and colours. I have had to buy expensive boxer shorts from “Polarn’ & Pyret” because he would not keep regular ones on, changing three-four times a day, trying to find a comfortable pair, complaining, pulling at them, walking weirdly… But clothes is just one chapter. “Gubby” will not eat fruit because of its consistency. He loves yoghurt, as long as it is smooth without pieces in it. Every morning since he was 5 months, he has had porridge with mango purée. That is what he still eats. Baby porridge and baby puréed mango. But at least he eats! And no lumps or grain to complain about. Smooth! I could go on and on, but will stop here.

Our house is cluttered. We lack storage space for most of our things. Today’s houses are not built for storing things. And when we go on holiday and rent a flat or house, “Gubby” wants to move there permanently. Because it lacks clutter. He loves his toys but is a minimalist at the same time. He likes order. At the same time, none of the boys can create that order themselves, but it has to be created for them. Sofie said that she collects little treasures and so does “Boo”. Both boys love bling. But “Gubby” does not really collect it. He is more in to a passion of trains and cars. He can’t have enough “Thomas the Tank Engine” trains and from what I have seen on YouTube, with him, there are plenty of adults on the American continent who have gone overboard in their “Thomas” enthusiasm. Living rooms full of it. He can not watch enough of those videos. Absolute heaven in his opinion.

I could talk of “Gubby’s” passion for animals next, but, I will just say that I know that both boys do not really understand that something is amiss with them. Both want to be loved for who they are, because they do not understand that they are different. And would it not be wonderful if everyone read a book like this, and understood that these children are not mean, they do not misbehave on purpose, that they can’t help that they are the way they are, and that people would come to the decision, that it is alright to be different and help, when help is needed, instead of chastising?

 

 

Advertisements

Comments Off on My Friday Book: “Can you understand me? My Life, My Thoughts, My Autism/Asperger’s Syndrome”

Filed under What's Up

Comments are closed.