The other week I was present for the following typed exchange by two people. Both are Autistic and both cannot use spoken language to communicate. (Their names have been changed, as even though both agreed to have their words published here, this issue is sensitive and distressing, as well as deeply misunderstood by most non autistic people.)
Layla: You have an extremely loud stomp. (This was in reference to the noise Jerry made several days earlier and that Layla heard while working in a neighboring room.)
Jerry: Is that a guess or are you certain?
Layla: If you tried to hide it then you gave away the secret.
Jerry: That is what I am behaving like on some days but proud I am not.
Layla: I heard it all and was curious and wanted to give help.
Jerry: Really do you believe that I am not evil? (J. turns his head so he is staring down at the table. His body is completely still. It is a noticeable change from the way he usually sits while having a conversation with Layla.)
Layla: Evil is not this and best to forgive yourself.
Jerry: Thank you for not judging me.
Layla: I only ask for the same respect.
Jerry: The deal is on.
I asked Layla and Jerry if I could transcribe their conversation and publish it here because non speaking Autistic people and the way they act in times of stress or overwhelm are so poorly understood. Non autistic people who witness the actions (often termed “behaviors”) of a non-speaking Autistic person who is overwhelmed, perhaps frightened, often ashamed, unable to control their movements and unable to express themselves are often viewed with annoyance, irritation, fear and/or bewilderment. As the non-speaking person cannot make themselves understood, they are at the mercy of those who care for them.
As I watched this conversation unfold I was struck, once again, by the disconnect between what most of the world believes about autism and Autistic people and the reality. Jerry expressed profound shame and upset and Layla responded with identification and deep compassion.
Their exchange reminded me of something Emma wrote about four months ago after having had a terrible night. I wrote about that ‘here.’ One of the things she typed was: “Pounding terror is all that remains.” More recently she wrote, “The raging screams in my head are starving and want to consume me.”
Raging screams… Pounding terror…
August, 2014
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