First, let’s start by the most important: communication. Being able to communicate with each other is very important. If you can’t explain what you want, then you are lost, you have nothing. I was told that communication is not just verbal communication. The verbal part is only a small aspect of the communication. You have all the non-verbal aspects of communication. That’s what makes it more complex for people with autism. A lot of autists can’t read all those non-verbal things.
I was told to look in the eyes of the person I talk to. When I talk to someone, I can’t talk and look at the expressions of the face at the same time. Besides that, if I look in the eyes of my interlocutor, I’m lost, I don’t know anymore what I wanted to say. All my concentration is needed for what I want to say, for finding the words to say it. I am very disturbed by this. I’ve been told that eyes can express certain things, but I’m unable to decode this non-verbal language. If I look in the eyes of my interlocutor, I will constantly ask myself what the person is thinking, what she wants to make me understand, the message that she wants to say, and so, I will lose the thread of my ideas. I’ve learned to look in the eyes of other persons from time to time.
I find it difficult to communicate what I want to say. I have to find the right words. Even if everything is clear for me in my mind, and that I understand myself completely, how can I best tell it to the others? What’s the best way? What may I say or what may I not say? For example, how can I explain to someone that I don’t feel all right? It’s not only that I have difficulties finding the words, but also will the other person understand what I want to say, how will my interlocutor understand my words? And what will his reaction be? I don’t know why but I can’t manage to express what I want to say.
I don’t get what’s important to say or not. I only tell snatches. I don’t see the need to tell everything. I have the impression that the rest is not important for the other person to know. For example when I go to the doctor, I say only some things, and most of the time they are taken out of their context. I can’t see the importance of telling the whole situation, because for me only that part is important, or I have only problems with that thing. Of course this brings misunderstandings.
This is what brought such a long painful journey before I was diagnosed. I told things to that family doctor. Things that I thought important, but they were taken out of their context. I couldn’t understand that it was so important to tell the whole story, the whole context. But again this is a lack of imagination. What is important to tell and what not. Apparently I give some importance to details that don’t need to be said. And I forget or omit to say the most important things. Always fragmenting everything in different and separate sequences is typical to autism. But because the family doctor was refuting autism, even after it had been mentioned by my parents, and because he had only snatches of my story, he wrongly analysed the situation. This file followed me everywhere and everybody afterwards believed what was written
I tell stuff that doesn’t clarify the situation. Communication is hell for me. Not only have I trouble expressing myself, but I have also problems understanding communication from others.
Neurological typicals (that’s what autists call non-autist people) have a strange way to communicate. They tell things that are not coherent; they don’t go immediately to the essential of what they want to say. I have the impression that they lie a lot. Just as if it was a game to tell the contrary of what they mean. Because they tell one thing but they mean the other. I can’t understand sarcasm, humour. I find it difficult to know what is important and what is a detail.
When I was at boarding school, I had so many difficulties to follow and understand the lessons. Not only because it went too fast, but also because you had to know what was essential and what were the details, and you also had to be able to find the links between different subjects. With communication it’s a bit the same. What is important in what other people have told you? How can you link things that different people tell about a same person? And do you have to tell that to this person?
When I’ve had a conversation with someone I can rethink about it for days and days. Did I tell it right? How has he interpreted that? I could have told this and that. Did the person understand well what I wanted to say? Shall she respect my trust? I’m always so insecure after a conversation. But I can’t tell my doubts, my fears to that person. Because I’m afraid to annoy that person.
Social interactions are linked to communication. Because how can you communicate with someone without interacting? I wanted to talk about each aspect separately to try to let you understand which difficulties I have in each aspect.
I don’t know who I can trust. It has happened that I tell my whole life to someone who just smiled at me. I considered that person as a friend because he was smiling at me. I was convinced that this person was trustworthy. My despair was big when I saw that it wasn’t so. But that person had smiled at me, so he couldn’t be anything else than my friend. Why would he have smiled at me otherwise? Now I have to be careful, because I wouldn’t trust anyone. I am scared to trust someone, even my family, my parents. I know that I can trust them, but sometimes it’s a real struggle to let myself trust them.
Social interactions are exhausting for me. Constantly trying to know what people expect from me, not knowing how to interact. Doing everything to please the other person, and forgetting myself. I will always give more importance to others than to myself. Even if I don’t enjoy it. I don’t know anything else, I don’t know how to interact differently.
I usually tend to help people. When I was admitted in psychiatry, more than once I was told that I had to stop taking on other people’s problems, and that I had only to think about myself. They asked me to do something that I didn’t know how to do. But they didn’t say how I could do that. Besides, it was against my nature: I’ve always liked helping people. But they couldn’t understand this. How could I explain to them what is important for me with my communication problems?
There is a huge difference between how I appear and who I really am. I’ve only got one expression, smiling, and I only have one attitude, pleasant. And these expression and attitude stay the same however I am feeling, whatever I am saying. I’m not playing a role, I’m not faking. I only have always the same expression, the same intonation. So, people think it’s not so bad, or that I’m not depressed (because I’m not crying), People are being mislead.
Not being taken seriously brings a huge uneasiness, which results in frustration, tiredness, depression, and sometimes to auto-mutilation. I can’t express it by any other way, so I hurt myself. Not being able to show how I really feel, destroys a lot. I feel devastated, it takes a long time before the emotion goes away.
The only emotion that I can show is anger. But only when I’m at home. Because there are rules that have to be followed when you’re not at home. And I follow these rules carefully. You always have to be polite, and so you don’t show your anger.
Even if I can’t manage to show my emotions, I have a lot of emotions. I feel them inside me very strongly. And it hurts. It hurts more because I can’t tell what I feel. I keep everything for me. I don’t know how to express them, because sometimes I can’t understand them myself.
Like every person I want to have friends. But I find this so difficult. Because when is someone your friend? How many times may you call each other? And passing by? What can you tell? What not? And what is the meaning of friendship? Just like what is the meaning of love? Of trust?
I have a strong contact with my family, but I can’t tell if I love them or not. I can’t tell it because I don’t know what love is. I think I love them, because I would be really sad if something happened to one of them. I’ve always had the impression that I love my family. But sometimes I think it’s more a love-hate relationship. But maybe more people experience that?
Now I can tell that I have two really good friends. Even if we don’t see each other for a long time, I know I can always count on them. And I’m always there for them. The anxiety that those relationships end is present. I’m anxious that one day I will tell something that’s taken out of the context, that I will lose my temper. Those two friends are also on the spectrum of autism. And I know from one of them that she also has a lot of problems with relationships. So we are both doing a lot of efforts. We are still best friends, and I hope that this will stay so for a long long time. We trust each other, even if this is a difficult aspect for both of us.
The third point of the triad is creativity / lack of imagination. This is the most difficult point to explain. Creativity is not used here in the meaning of being able to paint, to create an object. No, it’s imagination in the meaning of not being flexible.
For example: I’ve planned to go shopping in the afternoon, but the children of my brother come home so, I have to adapt my timetable. When something changes, when something happens I have to be flexible to change, to interpret something in the place. This can lead to frustration. And for me it’s not easy because I need more time than others to think.
And I don’t like when changes happen at the last moment.
I experience difficulties because I take everything to the word. Sometimes someone says something that has to be interpreted to the second degree. I can’t do that, because I take every word for what it counts.