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?!

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.

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?

 

 

My Friday Book: “Ten things every child with autism wishes you knew” ( split in to two posts)

I grew up with a father whose favourite saying was “Own Praise Smells Bad”. And it really does. Noone likes to hear someone sitting praising themselves as being great and having done everything right. It is not out of jealousy we dislike it, it is because the person totally lacks humility and thinks she is an expert on life, that she is perfect. And as the author of this book claims, noone is perfect. No, I know. There has only been one person ever on this planet who indeed was perfect. His name all Christians will know by heart and this is not a post about religion. But in a way it is, because to talk about perfection, to talk about dealing with what life has handed you in an appropriate manner, never giving up, well it all amounts to our time here on Earth and why we are here.

Before I read this book, I read another book about autism, written by an autistic person (The Reason Why I Jump). It was looking at the disorder from the inside and not from the outside in, making that book unique. Because this “10 things…” book, is by no means unique! As a matter of fact, the person who translated the autistic boy’s book, actually warned about books like this one. That self-help books are dangerous and that one should watch out with memoirs, because that is what they are, one person’s experiences and memories, which might not at all pertain to another person’s. Have I lost you? I’ll simplify: As for shelf help books, they are dangerous because what works for one child, might not work for another, and that will put you down as a parent, might make you give up… Likewise, one person’s success story, is not likely to be yours!

I give this book three stars because it will tell you some ways that autistic children act and think. But it is also her memoir and no one person’s life is the same. She talks of success, but at what starting point was she? Every parent of an autistic child knows that there are not two autistic children who are the same and no matter what you as a parent do for your child, everyone around you can tear that down. Through her book she puts an enormous guilt trip on you as a parent, because in her opinion, if you fight enough for your child and just say that your child can do everything, your child will end up normal as hers. Well, good for her, that she had all the money in the world to spend on her son. Good for her that she lived in an area and had schools available for her son, where she could find dedicated personnel. But today few schools have that money. And depending on where in the world you live and how rich you are, how strong you YOURSELF are, your story will be very much different from hers, no matter how much stamina for fighting, you are able to muster up. And if your child does not get her son’s life, she blames you, there is no other word about it. What parent wants to read a book like that? For most of us, it will be 20 years or so, before we see how successful our efforts have been.

I have three sons to compare, one un-diagnosed and two boys with identical diagnoses, and yet there is nothing identical about them. My one son lies, which she claims that autistic children do not, he does retaliate and take out revenge even though she says autistic children do not have the capacity to figure out how. When you read statements like that in her book and you see something different in your son, then you start wondering about her knowing anything, except what she has seen in HER specific son.

There is no way to get help really. You have to travel the road on your own. You can’t ask another woman what it is like to give birth to a child, how much it hurts, what you should demand along the way. Her pain is not your pain, her experience is not yours and the midwife working with her, might not be the one you receive, and even if you get the same one on the D-day, different personalities will work different together. One woman might like a gung-ho midwife, while another woman will like someone quiet who is just there for her. You can’t ask someone to give birth for you, you have to go through it all on your own. And the same goes for your autistic child, not one single experience will be the same. What one person is offered at one school is not what another one is offered in another part of the world or in another school.

The only thing you can get out of a book like this, is the fact that you should never give up, that there is always hope. Our oldest son Johannes was never diagnosed because it was never done in those days. I made many mistakes with him since I had no idea what I was dealing with. Yes, he functions alright in society today. But just alright, not great. And with the proper help and support, he could have gone further. He might have been spared scorn, bullying and condemnation, had there been a label put on all his problems: Autism. A label which can in many cases at least give you understanding. With him, I knew something was wrong from day one. But it never entered my mind that he might be autistic, because in those days autistic children were just children who sat and made monotone noises, rocking back and forth, hitting their ears, slamming their heads in the walls. You could not communicate with them, because they refused to look you in the eye, they were in their own bubbles. Had anyone told me, that this is just a very small percentage of the autistic children, I might have understood that I must seek professional help. All the tears and the anguish I went through till I finally gave up on him, when he was 23!  It hurts to know that some of it, was unnecessary. Soon two years ago, is when I had had enough and had to focus on his handicapped three youngest brothers instead and leave him to fight his own fights. He has shut me out anyway. We are just too much for him sensory wise. Or should I say too much chaos for him to handle, who needs to have only one-three things to focus on in life.

What I am trying to say is, that a diagnosis helps. It is devastating finding out that your child is not normal and that the behaviour you thought was a passing stage or just part of their personality or a bad habit, is actually there to perhaps stay forever. It is tough to accept it. But at the same time, when you know something, when you get a name on something, then you can do something about it. You can read and become more educated. You can learn how to deal with things. You can learn how to explain to others. You know on what level you have to put your fight on. But you also know what behaviour you can’t blame the child for. Because a lot of ADHD and autistic behaviour is borderline to what one can accept or should I say, that society can accept. That is just how it is and it is part of the problem.

In typical preaching fashion, Notbohm starts out pointing finger at everyone who spells autism with a capital A and tells people that it is wrong to say that you have an autistic child, that you must say that you have a child with autism. Well, in my world, I get angry at her because it doesn’t matter whether you spell it autism or Autism. A label is just a label and there is something wrong when she has the time or energy to be silly about a word! What matters is the handicap itself. And if you say that your child has autism, you are telling the world that it can be cured. Sure, maybe she cured her son of autism, but for most parents, that will not be a possibility and to slap their hands and say that if they worked hard enough, they could, is wrong. You are born with autism, it is in the genes, and there is no way of curing it like if you have a disease. The sooner you accept that, the sooner you can start learning coping strategies for yourself and your child. And to all those of you who object to it being a genetic handicap and blame it on vaccination. Forget it! Look at the world, not everyone who is vaccinated get the handicap. If it was the vaccine, everyone would become autistic. And look at my family. Out of 7 children, 3 are autistic and one has ADHD (And the doctors have now decided to test him for autism as well.). That speaks loudly! Genes. No matter how sad it sounds, this is more serious than you think.

My children are autistic, and they will not be cured of it. I have accepted that. I have also accepted that they must one day be told that they can not dream of becoming police officers nor military men, because autistic people are not welcome in those professions in Sweden. But as far as anything else, if they have the brains and the stamina, nothing should stop them. Sure, Johannes was told by the military that he is an idiot and should not show his face there again, and this without a diagnosis, but that did not mean that he could not have tried at least to become something else. He is too lazy though and doesn’t want to put an effort in to anything. He is content to diet, build muscles, learn how to kill people in MMA and whatever else you don’t need brains for. His life and his choices. I hope that my other sons will choose to at least try for something more worthwhile. That I will be able to show them, that hard work will make them grow and become better human beings.

But now we are discussing children (not my oldest son who does not even accept that he needs help), where we still can help and make a difference. Notbohm has isolated ten different areas which we all need to consider, not just parents and siblings, but also teachers and the community as a whole.

Number 1 is the fact that no matter what, the autistic child is a child. A child that is not just autism but also itself. Did that make any sense? When my son’s speech therapist forced us to have our son tested for autism, I felt anger. Because I did not care about anything else than that we loved this little sweet angel of ours. He has always been sweeter than sweet and have had to go through a rough time from day one, because he was born with one faulty kidney. It felt like, oh no, not one more thing to cope with when the psychologist and special ed teacher sat us down and told us that he is also autistic. For me, his autism have explained why his speech is so late and why he needs for us to speak in more simple ways. Why other children do not care to try to interact with him because he doesn’t know how to play WITH other children. But  he is a delight to be around and you love helping him with everything from getting dressed and feeding him, when it is things he finds too difficult to eat, to other things. In a way, it is like having a little toddler still, even though he is 6 years old. But associating with him is not just like being with a “baby”. He says funny things, you can talk about things that he wonders about or which he has seen on TV. So in that way, yes the autism diagnosis explains why he is good at certain things and why other things do not work as well without help. The big task for everyone coming in contact with an autistic child, is to find out WHO IS THIS CHILD?! Why help, if he doesn’t need the help? But it is very important to see where he does need help so that he doesn’t fail. My other autistic son does not act like an angel, but in a more autistic manner, than his brother. He tests your patience to the limit. He does things which drives people mad. And people who does not know that he is autistic, says that he is wild, mean and a devil. Catholic parents seem extra narrow-minded since these are comments I have received from his school, him attending, yes you guessed it, a Catholic school. When a child hears that enough times or all the time, the child’s self-esteem becomes non-existent and the child will not dare to try things anymore and will have a horrible self-image. I can honestly say, that the Catholic school has managed to destroy my son in the three years he has been in attendance. We are now moving him, in the autumn, when the new school year starts. We will have to see if a child can self repair and recover from what he has been through. So, as I said above, what ever you do as a parent, can be torn down by other parents, cleaning personnel at school, teachers, administration people at school, even the kitchen and custodians at school. In my son’s case, he has everyone in school against him.

Unfortunately there are a lot of mean things going on out in society as far as autism goes, which really frightens me. One thing I read on the internet was, about a parenting group on Facebook being allowed to bully autistic children. They call themselves something like “Moms against autistic children”. I just read that they had been forced to close their account but new have popped up again under new names. How can you be AGAINST a certain category of handicapped children? Who has ever heard of hatred against deaf children or blind children? What sort of society do we live in today?? Notbohm tells us exactly what sort of society: One which has started to use autism as a slang word. By calling a person’s look at economics, as autistic or someone’s sexuality as autistic, because it is without emotion, or teenagers accusing each other for being autistic, if they get tongue-tied or doesn’t react to being bullied. All this hurts the true autistic people, by making it to something which everyone has now and then. It makes it sound like something you have caused yourself and that you can get rid of it, if you just change. And it doesn’t give autistic people the respect they deserve for struggling with a really difficult handicap.

Number 2 is no doubt the one which most people have a difficult time handling and of course the child has an even more difficult time with, since he lives in the middle of it, which is that all the senses are out of sync. This is what my one boy has severe difficult with. He just can’t pay attention, behave, learn, adhere to social rules, but he will communicate alright, with you! The way they communicate with you, is not all straight forward though and not at all pleasant, all the time. They hold their ears, start repetitive movements, they show aggression, excessive silliness, clumsiness and have MELTDOWNS! “No matter how unprovoked, how random it may appear, behaviour never ever comes out of nowhere. There is always a detonator.” How I wish people would give my son the time of day, that they would search for the detonator, because they never do, out of sheer impatience or worse, they don’t know how!

What is it that these children can not handle? Notbohm suggests us imagining ourselves on a roller coaster, up and down, changing directions, dropping, hanging upside down, hair flying, fellow passengers screaming and at the same time you are supposed to conduct a meeting, clean your house, write a paper, give a speech, have a nice conversation, teach a class. Not possible is it? But we often can cut out a lot of what is going on around us to do what we are supposed to do. Autistic children can not do this at all. In a classroom they hear everyone murmur and move around and the teacher can not be heard over those sounds. And the hearing sense is just one of many. My little “Gubby” reacts strongly to loud noises, like a kitchen machine, a lawn mower, a motor cycle driving by. He gets panicked and I need to calm him down and tell him that it is alright and nothing dangerous. “Boo” speaks loudly and search for things which makes a lot of noise. At the same time, he can not handle all the noise around him in the classroom, at a swimming pool, at the sports arena, …

The tactile sense is also a difficult one. Both boys refuse to wear some clothes. They refuse to eat some things because of texture. Nothing saucy get a chance. So no casseroles, pies, puddings. “Boo” can not smell things, so his urine leakage is a problem, since he does not want to change clothes when he stinks. And “Boo” will not let whoever touch him and will scream loudly that someone has hurt him, when the person has hardly even touched him. Things you can be reported for. Cutting “Boo’s” hair is a huge trial in itself, him screaming bloody murder. But especially when there is a lice alert at school, it just has to be done! Nor can I let him walk around looking like a troll!!! “Gubby” is the other way around. He loves touching people. He will hug anyone, give them a kiss and he loves going right up to your nose with his and look you deep in the eye. He did this to a lady at the bank the other week and I had to tell him that she might not like it. She started asking me all things about autism when I told her that he is autistic and can’t help himself. What was I supposed to say to a shocked elderly lady? They became friends though. He asked her if she was a mamma and a grandmother.

Number 3 is about learning to distinguish between will not (“implying premeditation, intent and deliberate behaviour”) and can not, which has nothing to do with choice but a “lack of ability, knowledge and opportunity”. The schools and of course everyone else need to learn that  “all behaviour is communication and that all behaviour happens for a reason”. And I believe this is where autistic children are the most misunderstood! Because people around them only look at their behaviour as offensive, not why it is there in the first place. They think the child chooses it, itself. Instead of understanding that we have to be detectives and find out the cause. I would have thought it natural for people, especially if they have children of their own, to know that there is always a reason for a child’s behaviour. But I get reports of “Boo’s” behaviour every day. I am told to tell him not to do this and that and it is perfectly clear to me, that they NEVER EVER look at the reason behind his behaviour, they never go sleuthing and deal with the problem itself.  They judge HIM because they choose to disregard his diagnosis and what that handicap really might mean. When you have no knowledge, it seems to be the way to go. Take the easiest explanation. Bad behaviour, nothing else.

What can the reasons be for say my son walking out, refusing to do what his class is doing? Anything really. Not hearing entirely because he did not comprehend what was being said. Doesn’t know how to do what you are asking him to do. Things are overwhelming. The motor skills are just not there. It causes pain. Or how about just being tired or hungry? Most of all I would say that the reason my boys don’t do things, are because they don’t understand what they are supposed to do nor the rules, and people giving them too lengthy instructions so that my boys are lost after sentence one. A very strong point is also that autistic children are very afraid of failure because first of all, they are often given tasks where they are likely to fail, so they are used to failing. Secondly, in their world there is no grey zone, either you fail or you succeed, you can’t be in between. “Gubby” always wants to do his best which everyone at habilitation has noticed. He has even started to ask, “was that correct, did I do right?” because he is not given feedback in testing situations. But “Boo” has got to the point that he doesn’t care. He does things sloppily because he just wants the task over and done with. It is clear that he has not understood instructions nor how it is supposed to be done. He does not expect praise for the task but wants to know if HE has been “duktig” in himself. “Duktig” meaning being a good boy doing as he is told. There is a difference.

One signal which should alert everyone that something is up, is the attention-seeking behaviour. Notbohm says that it is good because it means that the child “wants to interact”. But hardly anyone will see it that way when “Boo” interrupts what the class is doing. He gets thrown out or he walks out and noone walks after him. In school his assistant of course does walk after him but she has no knowledge of what to do with him, when she catches up to him. Most assistants have no training at all. It is an in-between career choices job or one taken in desperation. In church, everyone ignores him. Not a soul walks out to see what he is up to except me, if I am in the same room as he was when he walked out. And most of all, noone asks him what he did not understand, what was so overwhelming, what upset him. It can be the boy next to him swaying on his chair or TOUCHING “Boo”.  It can be the boy next to him whispering something mean. It can be them singing songs he does not know the text of at all. Being scolded for not having waited his turn. Or talking about things which are way above his head. Which church things usually are. To understand religion, a child has to be able to do abstract thinking and have empathy, understand other people’s feelings and THIS autistic children can not do.

I just watched a documentary called “Living with Autism” on TV. I have seen the last 40 minutes of it twice now but have not been able to catch the first 20 minutes. Uta, the psychologist who has made the documentary, explains everything very well, but only a fraction really. One of the things she said was, that they do not lack empathy. But I would not agree. They do, as it does not come natural like for the rest of us. They can learn to show concern but deep down, they can never feel what we can, because they do not understand how other people think and feel. They lack the extra social sense, which the rest of us are born with. She showed it over and over in her program, how they really can not imagine what other people think, and how they get very, very upset when we don’t know what they want and think about, before they tell us. In their mind, we don’t have a mind of our own. We think what they think. That is why there is disruptive behaviour because “Boo” can not ask for help nor does he know that he needs to, since the people around him lack the knowledge of how to read his signals. And I will admit, that I miss a LOT of the signals, since I have five other people’s signals to read or attend to.

“Kitty’s” now retired teacher always brought up to me at developmental talks that he wanted praise and that she did not want to give it, because other pupils would get jealous. Now it has been decided that “Kitty” is also going to be tested for autism, since the hereditary factor is 80% and he already has three brothers with it. She did wrong though, did she not, when she always withheld praise but daily screamed at him for all the things he did wrong. (He has ADHD.) In the book 10 things… the author claims that the ratio for praise and criticism must always be 4:1. That is not what the teacher did towards “Kitty”. For the most part it was criticism and no praise at all. How can a child thrive at school then? “Boo” is in the same situation. Why is it so much easier for us humans to criticise than praise? What is it in us, which puts this lock and key on our praise comments. Why do we want to hold them back? It should be natural to just throw it out when it is due. I think we have got very, very afraid that children will start thinking too highly of themselves if they get praise, but autistic children NEED praise, to know that they are doing ONE thing right at least. It really is not that difficult to praise. You just have to practice. Now, I am not bragging but I praise “Gubby” all the time, because everything he does, is an improvement of yesterday. He does things that habilitation says he can not do, that BUP said he would never do, that his diagnosis says that he should not be able to do. At the same time, there are things he clearly can not do, because of his autism, but I have chosen to not focus on those things nor point out to him that there is a shortcoming. I ignore the things he can not do and do them for him, since I know before hand what it is he will fail with. That is a parent’s strong point, that we know our children so well and that other people rarely bother getting to know our children enough to see when they need help before they need it.

When “Boo” storms out of a room, it can also be interpreted as him removing himself from over-stimulation or under-stimulation. HE knows that he no longer can cope and in a way it is very empathetic of him to do so, in order to not disturb the others when he can no longer cope. This is when “Gubby” starts flaxing about with his arms, like a bird taking off in flight. He does not leave the room and bored children will of course focus on him and wonder what he is up to, when he starts. What he does though, is telling us all, that “now things are getting too much for me”. He can do this in a queue at the supermarket, when things get tense in a film OR funny, he does it in a testing situation when he doesn’t understand what he is supposed to do or finds it too difficult. He was tested Monday and when it was clear that he was answering every question wrong and I was on the brink of telling the speech therapist that we might as well quit that part, because it was too difficult for him, he looked at her and said “This is too hard!”. He has never said so before, but has got off his chair and flaxed instead. And “Boo” just walks out. “Kitty” will just say that he needs to go to the loo and will not come back.

Notbohm goes through all the behaviours which are signs that something is up and the next one is control. The child feels that the world around him is not controllable and he wants to hold on to the little control he feels that he has. This is when “Boo” does what he pleases no matter what we have told him. He goes off and does his own thing and it puts him in danger. When the class went to the cinema, he ran out in to the street to not stand on the pavement, where everyone were making too much noise and probably were pushing and shoving. This taking control will ALWAYS be regarded by and looked at by teachers as “confrontational, aggressive and defiant” (more or less quoted). And I am ashamed to say that often I forget as well, because it is soooooo much work keeping your eye on an autistic child and prevent all situations beforehand. With “Boo” you just can’t prevent everything. So he gets hurt. He does not get to go to plays, concerts, cinema, library, go swimming, go to the gym class, because they can not control him. He takes charge and takes off and they feel it is too dangerous when they can not handle him. He loved being at Legoland last year. We hated it. Because the above behaviour was what we had to contend with between every time we sat on a ride. It doesn’t work, so either we can never ever go to Legoland again as a family or someone will have to stay home with him. Alternatively, one adult have to walk around with him alone. And we would have to go in the autumn when there is a minimum of people. This Legoland situation is a classic one, where the autistic child does not function. And yet, “Gubby” had no problems what so ever. He was just happy to be there and never did anything “bad”, but kept a positive attitude throughout since that is his favourite place in the entire world.

Notbohm told the readers that in our situation, at Legoland, “Boo” was telling us that he was at meltdown point and we should have dropped everything and have left. Right, that might work in her family, with two salaries and two boys, one with autism and one with ADHD. She did not mention if her son with ADHD was with them, when they were in a similar situation as ours. Our trip to Legoland had been planned for a year. I had bought the entire trip on credit card, or we would not have been able to go at all. Every day his autistic little brother had asked if we were on our way to Legoland. So, we had one little boy who would not have survived leaving Legoland, half an hour after arrival. When you have paid 1000 DKK (£ 98, € 134, $ 146) in entrance fees, you have driven for four-five hours and have hired a flat for three nights, you don’t just leave and pack up your family and head back to Sweden. Because what will happen? Well, you have a credit card debt that will take 6 months to pay off, whether you actually stayed in the flat or not. You will have three siblings who are so disappointed that they will never forgive you. And those siblings, at least two of them, will resent the sibling even more than they already do. When going on a family  trip or outing, you do so to strengthen the bonds of family. You want love to get stronger and you want to have fun together, since a lot in everyday life is not so fun. The trip is not organized for one autistic child only. And while a lot of every day life is focused on preventing meltdowns, chores and nagging on children to do what school expects them to do, and us parents expecting cleaned rooms, hygiene and so forth, a family holiday is meant to get away from all those things. Even if it is for only three days. In our case, it meant everything. A father who is never home, was available full-time. All the children had planned on which rides to go on. Had saved their few coins to see if they could buy something in the souvenir shops. Everything could not be allowed to be focused on “Boo’s” autism. Sure. T. could have taken “Boo” back to the flat, 11 kilometers away, from Legoland and sat and stared at the walls all day with him. But it would not have made “Boo” happy to leave Legoland. And T. just felt that why should he sacrifice himself and his hard earned money? He wanted to have fun with his children. And to be honest, so did I. This was it, this was OUR family holiday with two teenagers at home, looking for work. And I was not going to let “Boo’s” behaviour destroy our three days.

Perhaps you have not been on a holiday, so I can bring up an everyday situation instead. Imagine yourself living in a village and basically never getting to go to a shopping mall. But you need something to cheer you up? A new jacket? Some new tops? Because your hypothyroidism, which leaves you too tired to drive to the shopping mall between 10:00-11:45, to shop on your own, forcing you to sleep instead, also having made you put on weight, so you can’t wear your favourite things anymore. You name it. Against your better judgement or not having any other alternative, you bring your boys with you to the mall after fetching them from school, since you are in the vicinity of the mall anyway. You have arrived in a shop and you see something you really like. You grab the things to go and try them on and then the boys are missing. You drop the clothes in the corner of a shop, hoping noone will take them, because there were no others in your size, and you run looking for the boys. You find one flaxing outside the shop and one has just taken off to the toy shop or the loos. You get angry and tell them to come back and the one who had run off, tells you that he is bored and wants to go home. You grab the clothes and decide to chance it that they fit and go to stand in queue instead. That is when the aggressive one tells the angel one to play hide and seek. Or crawl under the clothes’ racks. Or run out of the shop again? Notbohm tells you to just drop the clothes, take the boys to the car and go home. They are reaching meltdown and should decide over your life.

Now, that might work in her book and in her perfect little world. But since I get to go to the mall maybe once in three or six months, then I get hell-bent on paying for my items. More than likely, the items have to be returned because they did not look that great on or they did not fit. Which for me, means sending the bag with my husband, and after work, returning on the train to the town where he catches the bus to our village, he has to catch the bus to the mall instead. Returning home even later than usual. If you are at the mall, only browsing, yes by all means, leave. But if you have actually got to the point that you have fallen for something… Excuse me, but you as a parent deserve something for all your work! You can not sacrifice yourself entirely and never get to do anything but chores. It can actually be another scenario as well. The one where the child really needs a new pair of shoes and you just have to stay and try the shoes and pay. No other day will be better than the present one. Taking the bull by its horns in other words. Or how about when you are at the supermarket and in queue to pay for the dinner food. These are situations when the meltdown in our family, will just have to proceed. Sure it could have been prevented by going home at once, but the child would go to school the next day without shoes or the family would sit down to dinner staring at empty plates. No matter how much you cater to your child’s all needs, there are needs of others in the family as well, who need to be met. Including your own, to keep your sanity.

Revenge. Can a child with autism plan out revenge as part of can’t or will not? Maybe their brains can not plan such a thing nor carry out a plan motor wise. Which is what Notbohm claims. But “Boo” can certainly go and destroy someone else’s play, because he was not allowed to join in, destroy someone’s toy because he wanted it and was not allowed to use it, ruin someone’s painting because it received praise, hit someone because they just hit him, and eat someone else’s candy, because he wanted candy too. Whether you call it revenge or not, well that is a fine line, isn’t it. Someone like Notbohm would probably call it control issues or attention seeking behaviour. But to an insulted sibling or a neighbour child or class mate, it is called one thing only: Revenge.

She finishes the chapter by putting all the blame on you as a parent. If you have a can’t attitude, then your child will have it. You must always be the example. If your child is not happy, confident and full of self-esteem, according to her, there is only one single person to blame and that is YOU. And she of course have done everything right so she has the happiest, most content, best student of the year son, so she knows best. Good for her. Only an American could say what she says actually. No other nationality dares to praise themselves like that nor pass judgement on others. I believe that we all do our best, but failure is just part of the human experience here on earth. I do not work, I am home all the time. My work is my children. And yet I am not a supermum! I make mistakes daily. Even when I know my sons’ problems, I make mistakes because I have six children with very different demands and very different personalities and however much I try to be the spider on the middle of the web and foresee how each child will react to different things, I can’t stop things from happening. Because even if autism and ADHD traits are predictable and charted, the child will prove to every parent, that they are unpredictable. The more children you have, the less you can be there 200%, no matter how much you want to. And to say, well why did you give birth to seven children then, is not helpful, since I already had them all, when the diagnoses started raining down on us like plums falling out of trees, in the plum season. And most parents will be convinced that bad luck can not strike twice. It can! It can strike four times or more!

Number four on the list of things we should know, is that you might as well forget using the beautiful language you have adapted over the years, sprinkled with sarcasm, idioms, clichés, jokes, phrases from films, you name it. When you speak to an autistic child, you must be like God in the Bible. Jews studying the Kabbalah say that God never wastes a word, he only uses as many or as few words as he needs, to say something. That is how you have to talk to your child or your autistic pupil, neighbour or whatever. Simple and very clear sentences. Otherwise you loose them. Sure, you can look at your son and say: Put on your clothes now and let’s drive to habilitation because you are going to be tested today by the speech therapist. You know what will happen? My son “Gubby” will stop his flaxing and stare at me and ask “Are we going somewhere?”. I guess drive was the ONLY word he heard in that sentence. Instead the conversation will have to go like this: “Gubby, come!” – Here I am! “Do you need to pee?”. – No “Put your boots on”. – Are we going out? “Yes”. “Put your jacket on.” “Put your beanie on. It is cold outside.”. “Now mamma will get dressed”. “Open the door.” Once we sit down in the car and have got all the jump in to the car, fasten your seat belt, out-of-the-way: – Where are we going, mamma! “Habilitation. Remember where ‘Rakari’ works (He calls his special ed teacher this. Her name is Karin.)? – Yes. “That is where we are going. You are going to talk to Charlotte”. – Charlotte? “Yes. You and Charlotte will talk.” When we arrive to habilitation 25 minutes later. – What will I do here? “You are going to talk.”

In a way, you have to talk to an autistic child like to a baby or a foreigner who has just started to learn your language. Not condescending, not like he is an idiot, but you must think through what words you might use. Will he have learned this word? What happens is, you choose the simplest words you know for things. And when a word doesn’t work, you notice very well that it did not work and you have to try with some other way of saying what you wanted to say. In a way, for you, it becomes like trying out a new language you are just learning. You try to make yourself understood, so you will use the easiest words you have just learned and put them together to a sentence, without the problem of not knowing the grammar properly. The child understand no nuisances in the language. It is completely literal and your words weigh very heavily, to a degree you have never seen before! T., my husband, teases and jokes with his children all the time. That is his way of relating to them, his way of bonding. But it does not work at all with his autistic children nor with his son with ADHD. That sort of language is not the language that they speak. So they get upset and I have to step in like the police I am always forced to be in this house. I have to correct his language and be the interpreter, as well as tell him to knock it off, since they clearly do not appreciate it. But he does not see how it upsets them when he speaks a language they do not expect from him, nor understand. The worse is when he tries to get rid of their upsetness, with teasing, because that brings them to meltdown, not the other way around, of cooling down.

Test yourself with Notbohm’s examples. Do you tell your child: “Bite your tongue OR Don’t speak to me like that?” “Gubby” and “Boo” will think, why should I bite my tongue? That will hurt! And what does it have to do with me being upset?

“I smell a rat OR This doesn’t seem right to me?” What, are there rats around here? Where? I don’t like rats!

“Let’s call it a day OR It’s time to stop now?” Of course it is day outside. What else would it be when it is light outside. But I am tired and it is getting dark, so should we not call it evening?

One thing you have to be, is CLEAR. You can not tell a child to go look for something over there. You have to tell him exactly where to look, exactly what to do and drop all unnecessary words. Easier said than done. Quit kicking, is not good enough. Instead you must say “Keep your feet under your chair”. Let’s get going is no good but “We are going now” is the way to say things. Short. Concise. Precise. Instead of telling your child what they have not done, thinking that they then will do it, you must tell them exactly what you expect them to do. You can’t tell them their room is a mess or that it is cold outside, because it means nothing. They do not understand that what you really meant to say was clean your room or put on warm clothes today. You can’t leave the thought process up to them, you have to give them instructions whether they have IQ 70 or 110! I don’t think that the Swedish language is quite as confusing as the English one is, because we do not say things like “let’s wrap this thing up” when we mean, it is time to stop, we don’t say the car is acting up, when indeed there is something wrong with the car. So to all of you who use your language in this fun and interesting way: Stop it when you talk to autistic children. Yes, wrapping presents is fun but makes no sense if that is not what the child is doing right then. And a car which is acting up, what exactly does that mean since the car is not a child!

When speaking to your autistic child or someone else’s, remember to always give the child feedback. You must answer him, because to him it means that his message has gone through, that you heard what he said and understood. And the same goes for the child when speaking to him. If you do not get a reaction or answer, it simply means that your message did not go through to him at all and you need to rephrase yourself in a simpler or different manner. Yes, it demands more time to speak to an autistic child, more patience, more effort, but do it right from the beginning and it doesn’t have to mean more work. You just have to teach yourself to be on his level of speech and understanding of things and it becomes second nature. I don’t feel that it is a problem at all adapting my language to my 6-year-old. I have a “Gubby”-version of speech and another form for the rest of civilisation. And I have realised that “Boo” prefers my “Gubby”-talk. Why wouldn’t he? For me it has been more difficult to accept “Boo’s” diagnosis though, since he comes with everything above. All the negative aspects of autism are present in him and not in “Gubby” and the previous are constant battles to contend with.

Number five of the things we need to know, is that the child will communicate in more ways than one. Right, is that not what she has said all along in all the chapters? That all behaviour is communication. I do not know why she really have split these things in to different “things”, because it is all linked together. In this particular chapter she talks about autistic children loving to use phrases that they have heard in films. When they come at appropriate times, they sound deeply profound and make us shocked at the child’s intelligence. But maybe we should not be so very impressed according to Notbohm, because they are using someone else’s words to express what they can not express themselves. They have all these phrases stored on a hard drive in their brain and in my opinion, it is pretty smart to be able to retrieve them at the right time. It does mean that they did understand the phrase when they stored it. But according to the speech therapist, who sent “Gubby” to be tested for autism in the first place, it means nothing and is just him being a parrot. A parrot doesn’t understand what it is saying though, it just sounds hilarious when it actually coincides with something that is happening. But in the case of the autistic child, there is usually a thought behind.

Repeating what one has heard is called echolalia and “Gubby” sometimes repeats what I have said, like a little echo. To most of us this is unnerving, because it doesn’t make sense and usually that is the behaviour of mean children, bullying a child. In me, it wakes that hurt feeling I felt, when bullies repeated what I said, and I have to remind myself that my little boy is not trying to bully me. On the other hand, I really don’t understand what he is trying to do. Because he smiles when he does it. It feels like teasing but in another book I have read, the autistic child likes to control what he can control. And words he has just heard, he can control. Likewise, saying the same thing over and over again or asking the same question over and over again, gives him a sense of satisfaction because he is in control. According to the autistic boy, who wrote that book, they already know what the answer is but wants to hear it again, since that creates order in their world. Did that make any sense? You will get the same question about certain things, 100 times. It is just to accept it and answer the same thing every time. If you do not answer in the same way, the child gets upset, because he knows what the answer should be. The world is so foreign and scary, that these little things, like getting the same answer, is re-assuring him, that not all is scary.

Sometimes a film phrase or something he says, does not make sense to you. YET! Because you are not there yet, while he has jumped ahead of you. He has associated away from the main topic just like Stephen Fry does in his memoirs. I tried to read them and it drove me crazy. He starts telling a story, moves on to another and another and another, none getting finished and then suddenly you are back to the original one. Makes it difficult to read, since you don’t know when exactly you can take a break in the book, in order not to loose his reasoning. We can arrive at the pre-school and the teacher can ask “Gubby” if he is having a nice morning and “Gubby” just quickly nods his head because he is thinking about the music he heard in the car on the way to pre-school and wants to talk about that. But then what comes out, is something from the film, where that music was present. But he has left the music to the side and is talking about something which happened in the film. He quickly changes topics and usually I follow along since my thought process is equally quick and I can talk about something, but my thoughts have already moved on to something else and then something even further away, and when I finish talking about what I was saying, I move in to that topic instead. Others get confused of course but that is how I have always been and it has made me a better mother I think, because I follow “Gubby’s” logic perfectly, when noone else does.

She moves on, trying to calm parents down, that the echolalia is just a phase. I don’t  understand why it upset her in the first place? Then she is trying to teach parents how to teach their children communication. This part I found offensive, because I honestly think that all parents with autistic children with language problems, already instinctively know what to do. It doesn’t take a whole lot of errors before you realise what to try instead. Unless you are the father and hardly ever home. My husband seems tongue-tied all the time, using as little language as possible. Expecting people to know what he wants and thinks and that is not how any children work, not normal ones nor autistic ones. You have to use your tongue more than normal with an autistic child. You have to explain the world to them, to re-assure but also to put labels on everything. They do not understand a sad face so you have to explain why you look that way. “Gubby” gets scared of the kitchen machine, of the noise it makes, so I have to explain why I am using it, what is happening and what it will accomplish. Usually a nice cake or mashed potatoes. I have to look at him because that is the only way to see if he has understood, if he is alright and if he needs more information. This woman does not need to tell me to answer everything he says, so that he feels loved. “Gubby” always knows that I want to hear every word he says. I have to order people around him to do this though, so not everyone does what they are supposed to do. But I believe that parents do!

And to tell a parent that they must talk as much as possible with your autistic child, read to him, sing to him, is ridiculous. Every parent knows it is vital for a child’s communicative skills to start developing from the moment of birth. When you have a child with retarded speech development or very late speech development, you just know instinctively that you must up your efforts. Find that perfect book, which will make him go back to it over and over again. That book which will make him crawl up on your lap to hear the story instead of watching TV. And while we are on the topic of TV and film watching. I will not agree that it is all bad. You as a parent have the power to make it in to what it will become. You can turn the TV off if the programs are inappropriate. But TV can actually be a great teaching tool. In our house, I am always with my children when they watch TV. I multi task. I can sit and blog or surf the internet but I always keep one eye on the TV-program and one ear to the comments from the floor and sofa. All three of my boys have difficulties understanding what they are really watching and hearing, so explanations are always due. Afterwards I might have to go through the storyline again, to explain what could not be explained while everything happened. I also catch myself with having to explain facial expressions and feelings of people. But most of all, what the TV does, is help the child getting a vocabulary. “Gubby” has learned so many words from TV and as I have said, TV watching does not at all have to be a one way communication or a thing one sits and does quietly. Ours is very much interactive TV and how then can one look upon it as something bad. Yes, perhaps if the child watches non-age appropriate things, violent things or chooses to sit still instead of going out bicycling or something. But that is easily corrected. That is why there is a turn off button.

At this point, I will end this particular post. WordPress functions poorly when posts get long. Please follow me over to the next post, about 5 more things that are very important for us all to know about autistic children! 🙂