Thursday, October 8, 2009

Without Words

“I cannot ‘come back’ and defend myself. I cannot respond to others. This is scary, beyond scary. It is terrifying. Sometimes the words seem to be accessible, but as I open my mouth they disappear. In the presence of another, I instantly forget what I was going to say. This happens over and over. I want to talk, but I forget what to talk about. It feels like I am a blank slate. It petrifies me. People on the ‘outside’ expect me to talk. What am I going to do? Sometimes I watch real carefully to see what would be a good answer and give them back what they want. I am pretty good at this. I feel this is the only way to survive. Survival is becoming my middle name. Who would ever understand that I am a blank slate? When I am alone I am not blank, but in the presence of others I am. I am a blank slate walking around in a person's body. Please help me. This is too much for me to know. Who will listen to my burden?”

Let’s make sense out of this autistic child’s experience. We can only deduce what is going on within him. He seems to be telling us he has no ability to respond to others and this scares him very much. He says he wants to talk, but in the presence of others he goes blank. By himself he is not blank and can form ideas and probably has feelings. Finally he feels burdened by this experience and there is a sense of hopelessness and desperation in his writing. In my previous blog, we understood his experience to be a feeling of lack of freewill and control over his environment.

This child is describing the experience of not being able to express himself as he sees others do. It is a tortuous experience, which he seems to lack the ability to change on his own. I believe it is important to note that this phenomenon is probably going on with others with Autism Spectrum Disorders as well. He is describing how relationships cause him tremendous anxiety and cause him to collapse. He is not ‘falling apart’ because he wants to, but because of the anxiety.

How can we help this child who seems to collapse in relationship to people? Some steps that may be helpful for the child and yourself are 1) recognize that he has the potential to communicate, but the presence of another makes him feel too anxious and he ‘goes blank’ or forgets what is on his mind, 2) he is not going blank because he is willful or difficult, 3) help him to understand that you understand his predicament, 4) help him to become more comfortable with others including you. Until his anxiety is under control he will continue to go blank and finally 5) give him the time and space to talk. Create opportunities for dialogue with you.

Anxiety is something that people on the spectrum are always trying to manage. We need to put ourselves in their shoes. If they lack self-agency and dissociate in the presence of others, which creates an inability to communicate their needs than their daily existence will be one of coping and anxiety. People in general remain anxious when they do not have a way to self-regulate. 'Typical' people talk about their problems with others and hopefully find new solutions to manage a given situation or their anxiety in general. Because autistics do not have the ability to communicate their feelings we have to find other methods to help them to self-regulate.

What can we specifically do to help the autistic who is anxious? There is not an easy answer, but some thoughts to consider: 1) Talking about anxiety in general may be helpful. If the child is nonverbal, speak about how he might be anxious doing the specific thing he is doing. If he does have words either ask him how he is feeling or interpret what his anxiety might be like. Let him respond to you. It is important to not expect that he will be able to speak about his anxiety, but at least allow for this to be part of the discussion between the two of you. By doing this he is acknowledged for how he is feeling and hopefully in turn feels understood, 2) make room for the discussion of anxiety as part of the dialogue, 3) let him have the time he needs to warm up to new situations and not be pressured to comply to others' time frames and 4) work on developing a relationship with him that allows for mutuality, dialogue and direct expression of feelings.

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