God, I feel like I have no mind to use with others. I know I have a mind. It thinks. It sees. It reads. But this mind is different from others. This mind disappears in the presence of others. Others’ minds are the boss of my mind. I am at the whim of everyone. I feel like a ball being tossed from one person to another. I am controlled by whomever I am in front of. It is as if the “other” controls me. I lose myself in the “others” presence. Myself, my mind, does not work with an “other.” It stops and goes blank. It is scary to not have a mind that I can use. It is like others stop me from existing. God, they have the control and I must adhere to their existence. They have not been left out. They are people. They have a personality. I do not have a personality. God, why did you leave me out?
This is one person with autism’s experience. What is he saying? From my point of view, he is saying, “I do not have control over my body. My body does not work for me like others.” He is also telling us that he can tell the difference between his experience and those of ‘typical’ people. He is explaining to us what is it like to not have a sense of self-agency. Self-agency is the ability of the self to take initiative, to regulate oneself and to be the source of one’s behavior. The person with autism does not have that ability. He cannot literally control his behavior and his actions. It is not that he wants to be this way, but when one does not have a sense of self-agency that is his predicament.
He is also telling us that the very presence of another person makes him feel that he does not exist. He seems to lose his ability to communicate and thus cannot let us know what is on his mind. And finally, he is telling us how scary it is to live this way – no control over his body, no control over going blank and no control over feeling that he does not exist.
What can we do about his lack of self-agency?
1) We can incorporate within our own belief system that the autistic child does not have control over his body and that he lacks self-agency,
2) we can let him know that we understand that he lacks this control over his body,
3) we can adopt a belief that we need to recognize, validate and understand him,
4) we can adopt a belief that a sense of agency is developed in relationship to another person,
5) we can understand that agency is acquired in the process of interacting with another person,
6) we can understand that the kind of interaction the child with autism needs is our understanding of what he is trying to communicate through his bodily behaviors,
7) Our goal is to not have him compliantly adapt to us. This kind of adaptation to another makes him into a ‘robot’. Instead it is through our understanding, validation and recognition that he can start to see himself and then ‘use’ himself with us, and
8) He needs to see and feel that there is ‘space’ for him in the relationship. This means that he is a partner in the communication with us. Along with giving him space, it is important that he can feel that he has an impact on us. We need to allow him to influence our behavior and thinking. This is accomplished by letting him make some of his own decisions and by letting him sway or change our thinking. By setting his own agenda he can start to feel his power and his agency. In turn, we need to communicate back to him a confirming response.