Tuesday, August 17, 2010

Limit setting with ASD: Finding the Right Balance

Persons with autism have as a core deficit a limited capacity for what we call “dynamic thinking” – that is, processing and adapting to situations involving change or uncertainty. Many of my discussions with parents concern how to challenge their child to new, more flexible ways of thinking – remediating this core deficit of autism. Keeping in mind the child’s tendencies toward rigid thinking, rapid emotional dysregulation when challenged, and limited resilience, parents must balance challenge with appropriate compensations in order to arrive at the “right” level of challenge to remediate the primary deficit. In RDI® lingo we call this “right” level “productive uncertainty.”

Persons not familiar with RDI® sometimes have a perception that remediation through the RDI® program must involve specific “RDI® activities.” This is not the case. Perhaps surprisingly, the most ordinary of situations from everyday life with the child can be transformed into dynamic thinking opportunities with a bit of mindful parenting.

Imagine this scenario, for example:

You are in McDonald’s with your ten-year child with autism. Every time he goes to McDonald’s he always wants the same thing, a cheeseburger Happy Meal with a PLAIN cheeseburger and chocolate milk. He is obsessed with Plain Cheeseburger Happy Meals. He would eat them 24-7 if he could.

(How many of you have such a child, or a child with a similar obsession?)

Since you believe in picking your battles, when you happen to be at Mickey D’s, you usually let him get what he wants. You also are keenly aware that he does not like to be babied and wants to do as much as possible, independently, without your help. He has made this known to you in no uncertain terms.

“OK, you can tell her what you want,” you say.

He asks for a cheeseburger Happy Meal with chocolate milk. He did a fine job ordering, you think. The food comes, you both sit at a table, and he immediately asks to play in the Play Place. You say, after you finish all your food. He says OK. So far, great, you think.

Then he opens the burger. Oops. It has ketchup. Onions. Pickles. And, horror of horrors, mustard.

He had forgotten to say “plain.”

“It’s not plain! I can’t eat this! I’m going to get another one!” He is visibly upset. He starts to head back toward the counter.

Decision point for you.

Many things flash through your mind in an instant: He is hurting. Struggling. This is too much variation for him. Too unexpected. He can’t handle it. It hurts me to see him like this. What would a good parent do with a typical child who acted like this? What would a bad parent do with a typical child who acted like this? What would Dr. John Rosemond say? How much mental challenge is “enough” for him? How much is “too much?” Is “too much” permanently damaging? And why am I obsessing over making a decision about a lousy cheeseburger? Who cares, anyway? It’s only a buck! Is giving in this one time going to make a difference in the long run?

In an instant, with less-than-perfect information and a lot of faith, you make your decision.

“No. You are not.” You say it slowly, calmly, firmly.

Your child stops in his tracks. He looks at you, incredulous. He can’t believe what he has heard.

“Why not?”

“It’s what you ordered. It’s paid for. I am not paying for another burger.”

“But it has onions. And pickles!”

Another decision point. This time you decide to accommodate – OK, compensate - a bit. You take the burger, scrape off the onions and pickle and give it back to him.

“Now it doesn’t.”

Doubtfully, he looks at you. He looks at the burger. He hesitates. He thinks. He takes a bite. He takes another. And another. Soon about half the burger is gone. Success, you think.

Then he hits the mustard.

“Ewww! Mustard! I’m gagging!” He actually gags.

Another decision point for you. Has he had enough?

You decide. You take the roll. You attempt to scrape off the mustard. You almost succeed. You hand him back the burger. “Here you go. Mustard gone.”

“No it’s not! It’s still there!”

Decision point. You weaken a bit. Another compensation. You pull the mustardy roll part off. You give him back the burger with the bit of roll remaining that is mustard-free.

“Now the mustard IS all gone.”

“I’m still not eating it. I can see where the onions were!”

Decision point.

“Well, that’s your decision. I guess we’ll go, then.”

“No! I want to go on the Play Scape!”

“But we had a deal, remember?”

“But my burger is not right!!!”

“Well, I’m sorry about that. Sometimes in life you have to accept things that are not quite right. You have to adapt.”

“OOOOO!!!!! YOU ARE MAKING ME SO MAD!!! HOW DARE YOU!!!! Etc. etc. angry tirade.

“OK, so let’s go then. I expect you to control yourself here in the restaurant. I know that you can.”

Out you walk with a child on the verge of a tantrum.

In the car he unleashes a choice stream of threats at you, including promising to give you a time out, having a squirrel bite you, have the police come take you to jail (but only for 20 minutes) and other creative punishments for your audacity and horrible parenting.

“Hmmm.” You say. “I think this must be what happens to you in school when you feel like you are forced to be too flexible. You feel like you need to punish everyone. Now I understand.”

He stops. “Yes.” He says. “This is what happens.”

“Well, let’s think about what you did just now. You ate most of your burger that was not the way you expected. You did it OK. And you didn’t have a tantrum. That was great!”

“But I didn’t like it! It was really hard!”

“Yes it was. But you did it. And next time it will be easier.”

You drive in silence for a while. In time, his anger diffuses. He starts talking about different things. It’s over.

Later that evening, you decide to approach the subject again. You want to drive your point home. Spotlight his success.

“So, are we friends?”

“Huh?” He has forgotton the tiff already!

“After you being so mad at me about the cheeseburger. Are we friends again?”

(Slight whiney tone) Yeah, I guess so….but I really didn’t like that!

“Do you know why I didn’t let you get a new burger?”

“Because you wanted to save money?”

“Well, yes, but there was a more important reason.”

“To help me be more flexible?”

“Right.”

Silence.

"And you were. You did it."

That, my fellow parents, is a little slice of life from our RDI® lifestyle.

6 comments:

  1. Brilliant post and I love your points. But, what happens when you push too far and your son goes completely off the rails and learns nothing?

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  2. Laura I love this. Sent it on to my families with a link to join, of course. Told them what I loved most was how it shows that the most important thing is for the parent to remain regulated and mindful herself, keeping the frontal cortex online, appraising the situation in a dynamic way as it develops to gauge where to draw the line. And hey, if we misgauge, then rather than treat it like a failure, we use it to recalibrate our appraisal. It's the process, not the specific outcome that day, that matters the most....We are all learning....

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  3. Hi Gemma, thanks for the kind words and you pose a great question. As Janet so eloguently stated in the post above, a parent's primary objective is "appraising the situation in a dynamic way as it develops to gauge where to draw the line." You'll notice that I compensated at certain points in the process. I did this specifically to try to avoid what you are referring to - the point where he would have lost control due to too much challenge, and therefore learned nothing. My third sentence in the above post was "Keeping in mind the child’s tendencies toward rigid thinking, rapid emotional dysregulation when challenged, and limited resilience, parents must balance challenge with appropriate compensations in order to arrive at the “right” level of challenge to remediate the primary deficit. In RDI® lingo we call this “right” level “productive uncertainty.”" Indeed, this situation was an example of the balancing act that all of us parents need to engage in continually, but especially parents with ASD kids. Sometimes you will misjudge and get it "wrong." Your child will be overchallenged and you will get massive dysregulation, tantrum, aggression, self-injury. We have experienced all this. Still, remember that parents of typical kids only achieve the "right" level of challenge 30% of the time. Kids need to be overchallenged sometimes in order to build resilience and learn how to self-regulate. There is a lot that parents can learn if they happen to overchallenge their child. Achieving the "right" level of productive uncertainty with your child is ONLY possible if you overchallenge the child sometimes.

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  4. This is such an important post!!! Last night Pamela got all bossy with Steve about running to the store to get some bacon for her breakfast this morning. He was too tired and told her no. She was so rude with him that when she asked me I told her in the morning. She fussed a little but knows I stick to me limits and settled down. Then this morning, Walmart had the wrong size of Junior Mints and did not have tots. I was not about to go to another store and Pamela was at home. So, I went to Sonic (next to Wally world) and bought the wrong size candy and she dealt with it at home. She told me, "In the future" which means the store will have it right in the future.

    It is hard watching them struggle. But, it is far better than caving and creating a person who cannot handle change!

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  5. Wow! Great post for ALL parents.

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  6. This is so perfect! We just "mastered" our limit-setting goal, although it is still such a dynamic dance for me as the mom to decide how much I can stretch my kids by laying down the law and how much I can accommodate them at their level. Thank heavens I am neurotypical!

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