Death and autism- part 2

Posted: June 25, 2011 in autism, medicine
Tags: , , ,

I stand in the hallway with my dress shirt and pants accompanied by an oddly matched tie wearing a long white coat which is slightly dirty and has pockets overflowing with papers and notes.  Next to me is a small red-haired medical student, this is her first rotation but she is a former hospice volunteer so she is use to these emotionally stressful situations.

Across from me is a young black woman with tears in her eyes even before I say a word. But her eyes speak of something else, they speak of an intense need for someone to give them hope, but I am about to do the opposite. I am very blunt with her, I use the word “Death” and “Dead” repeatedly. Odd thing is, I feel myself when speaking like this, I drop all my filters which parallel tact and just “Shoot from the hip”. I crush her hopes, re-affirm again and again that palliative is not curative, and her loved one is in the hospital to die, not be treated.

While I am explaining this I am burning a lot of energy actively scanning for non-verbal communication. This of course is a problem with people with autism, we lack the ability (severity varies) to read non-verbal signs. To overcome this I run what I call “computer scripts”. I watch water from eyes forming tears, I look at the angles of the mouth to see if they change from resting state, I look at the facial muscles to see if they twitch, and I watch the hands to see if they jitter about or make fists.

The worst part for me, and sometimes most telling, is eye contact. Making eye contact, especially prolonged, causes what feels like physical pain to me. A searing feeling in my head that causes my mind to shout at me “LOOK DOWN LOOK DOWN”, I start to feel anxiety flood my body and my muscles tense, then I break eye contact and start again. But the problem is I know normal people thrive off eye contact. They NEED the ‘other’ to look at them in the eye and maintain eye contact in such a very stressful situation. So I run another script, I stare at their pupils for 20 seconds, break eye contact and look down for 1-2 seconds, re-engage. During this I examine their own eye contact, do they avoid my eyes? Do they burn with intensity and anger? Do they look beyond me? Are they dim-witted, like they aren’t absorbing the information I am giving?

It’s amazing how comfortable I am in these encounters, it almost feels like I am in “the zone” despite my lack of natural communication skills. I have an objective and multiple strategies to get to achieve that. I adjust my plan based on my scanning of non-verbal communication. And when the patient has a peaceful passing that is void of suffering, when I have reduced whatever mental suffering and questions the family has, that is when I feel a sense of accomplishment.

Its kind of funny though, if you asked me in undergrad or medical school if I was interested at all in palliative/hospice care I would’ve given a definite no. But this year I have had many, many encounters with it and it is one of the most satisfying interactions I have hd. Even when I spend a large amount of time fighting with a family on the behalf of a patient suffering horrible pain, when that patient passes in no pain because of me, I feel like I made a difference.

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Comments
  1. Paper Tiger says:

    I can relate to your painful struggle with eye contact. It is good you can make a difference in alleviating others’ suffering. I can’t imagine dealing with such a stress glutted social experience on a regular basis. Keep writing.

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