Saturday, August 8, 2009

Don't treat her like she's autistic!!!!

A chat with a mom Thursday night and a grandmother yesterday morning, both with little boys with developmental delays, reminded me of this incident from a couple of years ago. I dug it from my journal to share today.


On an October day in 2007, my daughter and I were in the waiting room of a local clinic that offers PT, OT, SLP services for children. We've been clients there since January of that year, and over the months, we had come to recognize many of the staff members. Because several staff use the big "gym" with clients simultaneously, other therapists know my daughter. They delight in seeing our children make progress, and we enjoy seeing them each week. In an odd way, they feel like familiar friends, as we get glimpses of one another's lives a few minutes each week.

An aside: This is not a clinic that understands RDI(r), which is guided participation applied to autism. It's not a clinic that understands Dr James MacDonald's, "Communicating Parnters" approach, from the same developmental roots as RDI(r).

This October day, we were in the waiting room just before our appointment time, waiting for my daughter's occupational therapist to come for my daughter. One of the other staff members and came into the waiting room (from the gym, as a session was ending) with her client, to hand the little boy off to his father.

A Therapist's Mistake

My daughter was sitting on the floor playing with toys as we were waiting for her turn with her therapist.

As that other therapist had given her client back to his father and was returning to the "gym", she paused very briefly, and said quickly, "A., what grade are you in now?" The thought came out of her mouth so quickly that my daughter did not have time to hear and process it, much less shift her attention, orient her body toward the speaker, and respond.

Before I could intervene with a gentle, "A., someone is talking to you," (I tried, really, I tried; you KNOW I tried), the therapist put both of her hands on my girl's face, jerked it upwards toward her, and said firmly, "A., LOOK AT ME. What grade are you in now?" (so many things NOT cool about that!) Then, the therapist asked A. what school she attends, and A. answered. They had a little conversation. (very cool about the conversation!)

The therapist was amazed by how much A. has grown--she'd gone through a growth spurt, and everyone has commented on it lately. I am tickled that the staff knows her well enough to notice, and I feel warm inside that she stopped to chat with my child.

HOWEVER, I am so disappointed with the lack of understanding on the part of the professional who spoke to my daughter.

She treated my daughter like she's autistic! One negative of an autism diagnosis is that many professionals quit treating your child like a child and begin treating them like they're autistic. I hate that.

I don't think she realized that she put A. into an out-of-the-blue passive position, and prompted A. into an interaction that A. hadn't realized was going to happen. I think she just launched into being "autism trained" and grabbing a child's face and demanding "look at me" is part of being "autism trained". People who are "autism trained" think you have to treat autistic kids like they're autistic. ARG.

Why "autism trained" can be a problem:

If I had been reading in the waiting room or doing the Bible study I brought, and the therapist wanted to speak to ME, she would have said my name and waited for me to "change gears" so to speak, to pull my head out of my study and orient myself to her. Then, she would have asked the question. She would have NEVER put both her hands on my face and forced my head to point toward hers and demanded "Look at me." She wouldn't have treated me like I'm autistic. Why treat my child that way?????!!!!!

The sad fact is that professionals in schools, clinics and homes all over the world are treating children with autism like they're autistic. And some of them are teaching parents to do that, too, like we were, in the beginning.

"Autism trained" too often means that adults believe kids with autism are not capable of shifting attention and gaze, orienting themselves to face the person addressing them, answering for themselves. If that friendly therapist had squatted down beside A., interrupted with an "Hi, A!" and waited for my daughter to respond, A would have oriented herself toward the woman and responded with a "hi" back. And then there could have been experience sharing language: "A., you've gotten so tall!" (A. might have said, "yeah!") And then the woman could have asked, "What grade are you in?" "What school do you go to?"

I know my daughter is capable of being responsible for her own gaze shifting, attention shifting, orienting her body, and when we grab faces and force orientation, we rob our kids of the experience of doing that themselves. We create the kind of learned helplessness that we do not want in them. They don't have to shift their own attention because someone does that for them.

If we don't offer opportunities for our kids to gaze and orient appropriately as they request or speak to us, how will they experience success and failure, how will they know the difference? How will they learn if we never let them try? How will they learn if they don't fail? How will they learn if we are not slowing down enough to offer opportunities to give them the responsibility for themselves?


Anonymous said...

Thanks Penny..........Excellent

walking said...

How on earth did you restrain yourself from putting your hand on that OT's face and telling her to NEVER DO THAT AGAIN?

What are you going to do about it?

Penny said...

Tammy, that was one time that I had impulse control. I e-mailed that page of my journal to the owner of the clinic. She asked me if she could remove the names that identify us and read it to her staff as an edcuation piece. We switched our appointment times and don't see that other staff member any more when we are there.

JamBerry said...

Wow. Thanks for resuscitating that and re-sharing, Penny.

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