Tuesday, October 11, 2016

The Mountains We Climb. Or, How to Be a Better Doctor

Dear Doctor,

I need a word with you. I want to tell you something about our lives, something about living with autism that isn't in your physicians reference books. I want to tell you how you can be the doctor we need you to be without ever taking out your prescription pad.

I want to tell you a little bit about the mountains that we climb, my boy and I.

We've been coming to see you since my boy was a newborn and you've known us all that time. Fourteen years. Two weeks ago my son needed a form signed so that he could participate in a swimming class and your receptionist pointed out that he hadn't been there for a physical in almost two years so we took the first appointment available.

Now, you know my boy is autistic and that he doesn't speak much, but we've been in your office enough so that you should also know that he has lots of ways of making himself known. But even if you didn't, I want to help you understand how to interact with a person who struggles with communication.

When we sat in the exam room with you, my boy was right next to you and I was further away, on the other side of him. You started off asking general, friendly questions, but rather than address my boy -- who is fourteen years old, after all -- you looked past him and spoke past him and asked me instead. Each time I pointedly turned towards Oliver and redirected the question to him.

"How's it going?" you asked me.

"How's it going, Oliver?" I asked.

"Good." he replied.

"So, anything giving you any trouble?" you asked me.

"Are you having trouble with anything, Oliver?" I repeated.

"No." he replied.

"So, he's in school, I assume?" you asked.

"Oliver, are you in school?"

"Yes." he said.

Do you see how that works? It's not as hard as you might think. Look at him. Talk to him. Ask him your questions and give him the chance to reply. Treat him like more than an object that is in the way of the conversation you want to have with me about him. He's your patient. If he needs help, or if you need help, I can offer support. But when you look past him and talk past him, refer to him as though he weren't sitting right there, you deny his person-hood and add to our burdens. Because in this situation I have two choices: I either find some gentle or not-so-gentle way to call you out for treating him like a non-person or I play along, get along, and contribute to the othering of my son. One choice exhausts me and the other wounds at least two of us.

Later in the appointment you looked past him again and asked me if my boy was ever depressed or if he had a good circle of friends and I you looked at you and wanted to laugh. Bitterly. "Both are about like you might expect when he's so often not treated like a person." You looked confused, my husband looked wary (he knows how I can get), and I wondered what you scribbled in your notes and if it contained the words 'passive aggressive'. 

Having autism is sometimes hard, Doctor. Not being able to communicate in the way the world expects is harder still. Supporting a person with both of these challenges can also be a struggle and maybe you've guessed by now that the hardest part can sometimes be other people. But don't take it too personally, you are just one in a long line of doctors who have treated my boy this way. It happens with other people, too, it's just harder to take when it comes from someone in the healing profession. Because we need allies. We need doctors who will help us troubleshoot often difficult issues and to be of service we need you to really see the person with the issues.

So Doctor, I want to share something with you that I hope you'll remember. Day after day my boy and I experience a thousand little episodes like the one I just described. In small and sometimes subtle ways my boy is told over and over and over again that he is different and therefore less of a person than everyone else. And if you put all the hard things about having autism in a pile and then made another pile out of the thousands of episodes like the one I'm writing to you about today, you would see that the mountain of advocacy that other people make us climb is the more exhausting of the two.

We take allies wherever we can find them, Doctor, and hope in the future you can be one. In the meantime, may all your mountains be small ones. We'll see you on the road to the top!

Very sincerely,

1 comment:

  1. Laurence6:25 AM

    So awesome as usual ! Things take a long time to chance but your involvement for inclusion will make the change happen :)