Older Journal entry written 1/2007 in response to an Article by Kim Stagliano, Titled The Crappy Life of the Autism Mom. Article can be found at www.huffingtonpost.com/kim-stagliano/the-crappy-life-of-the-au_b_37742.html

Answering your article is my mom’s idea of an English independent typing assignment. She hears me complain all the time about the treatment I received as a child because the treatment did not make sense, not for me or to me. There is no harm in wanting better for your child, but treatments need to make sense- and I mean here, to the child. I bet my comments will get the same response from discrete trialists as yours from the neurodiverse autism world (NDs). In fairness to the NDs you may be misunderstanding. The point is not to accept us wholly as we are, but to respect us as human beings first. Treatments need to make sense to the recipients.

My treatment as a child was inhumane. My body is lost in space. You call it kinesthetics, having no body sense of self in space. Orientation, direction of movement, these are most difficult for me. You knew this, yet you decided to teach me imitation by touching body parts. You drilled me over and over and over again. My cries were ignored. “No” was not an optional answer. How come it is not ok to say “no” as in “I don’t understand”? You train us to be compliant puppets. Does your wish for your child include that? I know you want child A to use the potty and child B to not play in it. Those are excellent goals. But it is how we reach the goals that is reflective of the issue.

To sit on the toilet repeatedly all day is how they tried to teach me the potty. Do you know what I learned? The program he refers to involved sitting the child on the potty for 20 minutes, followed by 10 minutes of table top work off the potty. The idea was to catch the child voiding in the potty such that the behavior could be reinforce/rewarded. When toilet training, this program was run day long. It was designed by a highly regarded specialist in the field. After several weeks they reported he simply was unable to grasp the concept. Clearly, he grasped the concept just fine. If I peed as soon as they took me off the potty, it took them my work time to clean me up. I sat on the potty, but never worked. I learned, but not the lesson they wanted.You have to make lessons meaningful to the child, both the lesson and the result.

Too often we as autists don’t understand the question being asked. If in conversation, someone answers you out of context, you ask the question a different way. But to us, you just keep asking the same way again and again. No one looks at our answers to determine what question we are hearing. THAT is a mistake.

You are witty in your comparisons, but what comparisons have you made for Peanut? She does not like feces. It is the water she seeks. And do you throw her in the tub to clean her up? Reward her for playing in the toilet is how she would see it. Play twice! I don’t have a solution for you, but Peanut does. Look to the child is all I am saying.

You love your girls despite their problems. It doesn’t mean not wanting more for them. It means treating them as loved in the course of developing them. If that is not what the ND’s are saying it should be.