I’m standing in a store with a 15-year-old young man diagnosed with Autism. We are an unlikely gang of four: me, another clinician, his mother, and Joseph. Joe towers over my 5’1’’ frame, and he’s twice my weight. He looks pretty intimidating. Before entering the store, I removed all of my jewelry, took off my eyeglasses, and stored any items in my hands…I’m ready for action…It’s about to go down!
I’m at the store with Joe and his mom because she describes her son as a person “out of control,” “addicted to soda,” who “suffers when he can’t have it.” This mother travelled over 2000 miles to see me, leaving her country, home, other children and work for 6 weeks because she is desperate to get help for her son. She pleads with me, “I can’t take him anywhere. When we go out, he runs away from me, grabs food or drinks from other people’s tables and creates a scene. I feel like I’m in jail with him!”
So, what’s going on with Joe?
On the scientific side of things, part of Joe’s diagnosis includes a Processing Disorder, which means that his brain isn’t using information well. Specifically, he has trouble with something called Self-Regulation Disorder, which is a type of Processing Disorder that limits a person’s ability to adapt to their environment. Typically, this leads to rigidity, control and the need for things to be managed in a specific way for the person to be comfortable in their environment.
The area of the brain that allows us to adjust and not go crazy when we go into a busy mall at Christmas time, or to automatically wiggle or sip water when we need to wake up in a boring meeting, is a part of the brain that helps us adjust to the environment. That part of the brain is not working for Joe. It’s not damaged, it’s just not functioning to the level that it should be. It needs stimulation to light up and work properly. Because this area is not working so great for Joe, it means that instead of him being able to internally adjust to the environment, (like we do when we need to be in an uncomfortable setting) he instead needs the world modified to suit to him. It is easier to manage Joe’s triggers at home. It’s next to impossible to control the real world, making it hard for him to function outside the home.
Protective Bubbles do Burst
Because of his decreased ability to adjust, Joe has trained his mother; and he has taught her well! When he is at home, and everything is going his way, tailored to the just right settings for him with all the things he likes, Joe does “great”. Great is defined as, he’s quiet, he’s not asking her for the same thing over and over, and Joe basically wonders about the house leaving her alone, and he is ‘happy”. When he leaves his protective bubble and must deal with the world at large, the proverbial sh!t hits the fan and mom is often left cleaning it up. She’s seeing me because she’s tired. She can do it no longer, and she is afraid for her son. Seeing how hard it is for him to function in his life and the world, she worries about his future.
My job is to support Joe’s brain to rewire so that he can have access to the parts that help him regulate or adjust in different environments AND to have him use that new wiring in the real world…like in the store I’m standing in. Another HUGE part of my job is to demonstrate to mom that he indeed has the new wiring and can use it when given the opportunity and support to do so.
I know the wiring is in place because during treatment we have tested the newly stimulated parts of the brain. We see that it is now more active, and he is demonstrating increased self-regulation and self-control. We have even gone as far to bring the ‘demon elixir’ soda into his sessions, right next to him, sipped it in from of him and he didn’t scream, hit or attempt to get it, as he usually does. But, as mom said, that’s a controlled environment, inside the magical walls of TheraPeeds Family Center where parents believe we have used some type of hypnotic paint that renders their children functional. So, we take this out into the real world for a field test.
Just Say No
We walk into the store, right up to the refrigerators with an array of soda. On cue, Joe mutters his soda request. I tell him “no”. We walk away and guess what, he comes with me. He requests again; I simply say “I said no, don’t ask again”. He doesn’t. We wander around the store; him, me, his mother. I’m waiting for a soda request, none comes. I stop, I look at other foods, we are wandering up and down aisles. There’s no running away, no screaming, not even another ask.
Time to turn the heat up. I sit him down next to the refrigerators, I take out a soda and hand it to his mother, I give one to the other therapist, I hold one, I put one right next to him. He doesn’t touch it: he doesn’t ask. His mother is shocked and gawking at me. I look at her and say, “you see that he can do this right?” She nods emphatically. Because I’m a pain in the a$$ and I love to push the envelope, I ask him to put all the sodas back into the fridge, he does. Not a word. Imagine mom’s face.
After about 30 minutes in the store, contriving every possible way to trigger the outburst that usually comes related to soda and food with no success, we decide to leave. We are all pretty chuffed (British word for proud) around the success of this outing. As we depart, he turns to his mother and says “Soda?”. His mother responds, “there’s none”. Insert picture of me smacking my head!
- What mistake did mom make in this situation?
- How could she have handled it different?
- How is she affecting his processing disorder or poor self-regulation with this response?
- Bonus question: What type of parenting behavior did she demonstrate there? Positive or negative? Do you know the specific name of that example of parenting behavior?
- There’s a reaction in there from mom…which one?