Wednesday, June 17, 2009

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

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.


  1. Hi, Kim here. This is a thoughtful post.

    Bella is now toilet trained using a really gentle program. And you're right, once she understood what was expected of her and had a single success, she was well on her way. I'm so proud of her! We used a program out of Dallas. And yes, I know it's the water she seeks.

    I have never drilled my kids into submission with ABA. They're children, not dogs!

    As you know, I use biomedical treatments to help my girls manage their behavior by feeling better. Getting rid of stomach pain does wonders for behavior. Poor Bella ended up in the ER when a gluten free food turned out NOT to be gluten free. She was a mess, in agony, screaming, biting her fingers, spitting at people. Behavior? Techically yes, but as a response to pain. I have a friend whose grand daughter has ASD and tells her Mom, "My stomach hurts" but Mom refuses to try the diet. That makes me incredibly sad.

    Respect is the first component of everything I do for my girls. And love. I'm happy to report they are each making great progress. Gianna is in mainstreamed math and science with support. I just bust with pride for her! And she has friends. Bella is a tall 8 year old now with a bright smile. And Mia is doing well with her school work and peers at her own level.

    Thanks, Mike.


  2. Thank you for your response. It proves that to disagree may not be to disagree at all sometimes. To connect across the internet is a wonderful thing. It is an excellent venue for discussion and hopefully change. Your girls are lucky to have a respectful and loving mom.


  3. I discovered your blog yesterday and I just finished reading all 31 blog entries you have made so far during May and June 2009.

    Your information is consistent with the information over the past 15 years from my now 37 year-old son Ben, who was noted by his teacher over 32 years ago as processing one modality at a time. Of course, there are a number of individual differences between you and my son Ben. Thanks to Michael and Linda Zacks of Brookline Massachusetts, my son Ben had free adapted aquatics lessons to learn to swim over 25 years ago, starting at about age 10 or 11. Since I have been on the internet for over 12 years, when you were just 6 years old, I wish I could have told your family to try swimming for you back then!

    I would like to add my comments to several of your blog entries. Should I do so by going back to the original blog entry, even though they may have been posted by you several weeks ago?

    Arthur Golden, now in Jerusalem Israel

  4. To Arthur Golden -

    Yes, people tend to read all or by subject area they are interested in. To group comments with topic is most useful approach then, I think.


    Please consider submitting your email as separate comment. We will not publish it. Rather, Mike wrote you a private message I am hesitant to send without understanding its full implication. We have had contact before and Mike remembers Ben. Mom

  5. Hi Mike,

    Great work. I've been an autism worker for 30 years and a FC and autie advo on the net for 15 years. I own the "autismlist" at yahoogroups. Can I get your permission to serialize your blog entries on my list?

  6. Yes, Thank you.


    Mom here. Just to be clear,Mike types without any physical support but still requires Mom to be sitting around corner of table from him. We are hoping to maybe pair him with some college OT students for a bit of additional directed typing in the Fall Semester as I think that might just loosen the emotional dependence. He also types without spacing or punctuation on his first drafts. Uses a second board to edit for class assignments. For purposes of his blog the writings are editted for spacing and punctuation.