Issue No. 46, June 2013

“When it comes to privacy and accountability, people always demand the former for themselves and the latter for everyone else.”

~ David Brin

Holding Up the Mirror of Accountability

Perhaps more than any other months, May and June are about transitions. Mortarboards of every color and size fill our camera viewfinders as students move from preschool through high school and beyond. These transitions have shaped hundreds of conversations I’ve had with parents who wonder and worry whether their child with autism is ready for the next phase of their march toward adulthood.   From transition to kindergarten on, the stakes grow ever greater, right up to “Is my teen ready for college?” and “How do I know if he’s ready to live on his own?”

Academic proficiency isn’t what I think of first, or even fifth or tenth, when I consider what young people  need to be successful in life after high school. Self-care, self-advocacy and executive skills are just as essential. But the bottom line should be, plain and simple, his social/emotional maturity level. Does he respect authority figures and peers; does he know how to solve problems in academic and interpersonal situations? Does he possess one of life’s make-or-break skills: does he hold himself accountable for his own actions?

What does it mean to be accountable? History gives us no better illustration, both concrete and metaphorical, than the legend surrounding the engineers and architects who designed and built those  majestic Roman arches. Tradition held that after lifting the final capstone into place, these professionals would stand beneath the arch as the scaffolding and other supports were removed—thereby visibly and unflinchingly vouching for their work.

The willingness and ability to be held accountable isn’t something children are born with. They learn about it from us, in the degree to which we model it or fail to model it for them. I’m still haunted by an email I received years ago that brought the subject into sharp focus.

An Early Childhood Special Education teacher wrote to me about a student of hers who had moved on to kindergarten and was, in her words, struggling. “He has an aide and the best kindergarten teacher I have ever known,” she said, “but his deviant behavior is escalating out of control. We have a strong picture schedule in place with many planned breaks and many reinforcers established. Yesterday he told the special ed teacher he was not happy, that he did not want to do something, and that he was going to pee his pants. Then he did exactly that.

“My feeling,” she continued, “is there has to be consequences to his action because he knew what he was doing. My question for you is: how accountable do we need to hold these autistic children?”

My reply: How accountable shall we hold the teachers of these autistic children?

The teacher’s note raises several red flags. One is the use of the term "deviant behavior." What exactly does this mean? Non-compliant? Aggressive? Withdrawn? Unpredictable? Is there more than one deviant behavior? How many behaviors is a five-year-old with autism expected to change simultaneously? Does the behavior happen at certain times of day, or when certain people are around, when certain activities are beginning or ending, after he's eaten certain things (or hasn't eaten in a long time) or during certain activities? A child’s behavior is information about the way in which he is processing his physical and social/emotional environment. Describing specific behaviors and charting the pattern of these behaviors is critical to being able to figure out what your student is trying to tell us through his behavior. It is the job of the adults in his life to find the root cause. Trying to eradicating the behavior without identifying the cause will only result in the eruption of a replacement behavior.

A bigger question: when the child attempted to communicate with his teacher, telling her he was unhappy and didn't want to do something, what was the response? Bravo, bravo to him for trying to communicate his needs! But when he does so, and his communication is not heeded and his needs not subsequently met, doesn't it seem logical that negative behavior would follow? When children with autism communicate that they are unhappy and don't want to do something, it's our job to ferret out the reason. Maybe he doesn't understand the instructions, maybe he knew it yesterday but can't retrieve it today, maybe he thinks his efforts will be ridiculed, criticized or corrected in an embarrassing way, maybe he feels like no matter what he does, it's not good enough, maybe what he’s being asked to do causes discomfort or even physical pain. He may not even be able to articulate the reason, in which case we must try to ascertain the source of his resistance through nonverbal clues. If any one of these reasons is in play, as is likely, I can easily see peeing his pants as a symptom of his anxiety. He tried to communicate that, too. I'm not sure how he could be held accountable for this. If he is punished for doing his best to communicate, what is the message? If there is a notion that he was doing all this to "get" the teacher, consider that this is a level of intent not likely to be present in a five-year-old with autism.

A picture schedule is great for establishing routine and expectations contained therein. But it doesn't necessarily help a student with autism self-regulate his disordered sensory system or decode language and communication that is presented in a manner he can't understand. A Sensory Profile, a set of 125 questions asked of caregivers and teachers regarding the student's behavior in various settings and situations, could be extremely helpful in identifying where sensory issues may be causing behavior. The Sensory Profile can be administered and interpreted by his occupational therapist.

When adults ask me about changing a child's behavior, I always ask them to look at their own behavior first. We must ask ourselves: do we communicate in a positive manner, or a punitive one? Are we looking for the source of the problem, or are we operating on assumptions? (Unfounded assumptions are no better than guesses.) Are the rewards and reinforcers we offer to the child with autism meaningful to him, not just to us or "typical" kids? Are we modeling the kind of behavior we want to see from him? Do we distinguish behaviors that are truly harmful or disruptive from behaviors that are merely annoying, and do we choose our battles accordingly? Do we acknowledge to the child how hard it is to change behavior? Adults don't manage it very well themselves, as witnessed by how many of us make the same old same old New Year's resolutions every darn year, over and over.

When evaluating a child’s behavior, the equation is this: you + him + environment = behavior. Certainly, children must learn to be accountable for their behavior. The best way to teach them is to model accountability for our own. That includes sharing our mistakes and foibles and attempts to do better next time, a human condition we all share, whether child or adult, autism or no.

It begins with standing under the arches we build.

© 2013 Ellen Notbohm

This month in Autism Asperger’s Digest

“I Choose to be Optimistic”

“Maybe things wouldn’t have turned out to be as positive as I hoped; maybe I wouldn’t have been as successful as I’ve been able to be, had I worried too much about the worst that could happen. What matters is that you’re able to see how it makes you look inside yourself—what makes you, you,” writes Bryce in explaining why he chooses to remain positive in the face of autism’s challenge.

Downloadable PDF summaries of Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew now available on my website.

Did you miss my last newsletter? Autism awareness is not enough challenges us to move beyond awareness into action.

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Excerpts from all my books are on my website, including full chapters from Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew.

©2013 Ellen Notbohm | Third Variation Strategies