Ellen Notbohm

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Book excerpt
Ten Things Every Child With Autism Wishes You Knew

Chapter Eight

PLEASE HELP ME WITH SOCIAL INTERACTIONS

We can be blunt with each other here: kids with ASD frequently stand out as social oddballs. The heartbreak it causes, to child and maybe even more so to parent, is the very reason many parents feel the intense need to “fix” that aspect of their child. If social competence was a physiological function, we could throw medication, nutrition, exercise or physical therapy at it and make it happen. If our kids were curious, outgoing, motivated learners, we could teach it curriculum-style.

But our kids aren’t like that, and social awareness isn’t a set of concrete, itemized skills. “Manners” (please and thank you, use tissue not sleeve, wait your turn) can be taught but learning to be at ease among others in the bustle and nuance of daily life isn’t something that comes from a book. It is more a state of confident being that grows with careful nurturing of several important character traits.

Flexibility – being able to see and experience the world from standpoints other than your own, being able to “roll” with unforeseen deviations from routine and expectation, being able to recognize that mistakes are part of learning and that mistakes and disappointments are matters of degree.

Motivation – the impetus that we get from not only understanding that something exists, but why its existence is important and how it matters to us.

Self-esteem – having enough faith in your own abilities to be able to risk trying new things, to experience failure as part of learning and growing rather than as an end result. Having enough respect and affection for yourself to be able to deflect the cruel and thoughtless remarks and actions of others as saying more about themselves than you.

Awareness of nonverbal communication – These are the junctures at which the complex subtleties of social interaction can go awry. There are three broad categories:

Vocalic communication: He doesn’t “get” the myriad nuances of spoken language. He doesn’t understand sarcasm, puns, idioms, metaphors, hints, slang, double entendres, hyperbole, abstraction. He may speak in a monotone (suggesting boredom to the listener), or he may speak too loudly, too softly, too quickly or too slowly.
Kinesthetic communication: He doesn’t understand body language, facial expression, emotional responses (crying, recoiling). He may use gestures or postures inappropriately, may refuse eye contact.
Proxemic communication: He doesn’t understand physical space communication, the subtle territorial cues and norms of personal boundaries. He may be an unwitting “space invader.” The rules of proxemics not only vary from culture to culture, but from person to person depending upon relationship: Intimate? Casual but personal? Social only? Public space? For most ASD kids, deciphering proxemics requires an impossible level of inference.

There’s no short cut, magic bullet or eureka cure to your child’s becoming comfortable with social interaction. It’s a mosaic of thousands upon thousands of petite opportunities and encounters that coalesce into a core of self-confidence. It requires you, as his parent, his teacher, his guide, to be ‘socially aware’ for him 110% of the time and clue him into the social nuances that are so difficult for him to perceive.

Social navigation is necessary at every turn in our lives: at home, at work, at school, in our travels about the community, in our shopping, recreation and worship. As you shepherd your child through this challenging landscape, I implore you this: do it without the mindset that you must “fix” him. Sending the child a constant message that he needs to be “fixed” will surely build the wall that prevents the very progress we want for him. Self-esteem, that essential component of social functioning, will not flourish in an environment that sends the message: you’re not good enough just the way you are. Certainly there may be behaviors that aren’t conducive to his social development, but always, always separate the behavior from the whole child.

With Bryce, I knew unequivocally, coming off the blocks, that we were in a long, long race and that the finish line, if in fact there was one, was light years distant. On a good day, it meant the routine unfolded pleasantly and productively and that progress toward our goals was evident. On a bad day it meant that life had to be lived not one day at a time, but one moment at a time.

It was on one of those days when the road stretched too far ahead that I began to wonder, how much is enough? When the need is as all-encompassing and as never-ending as is the constellation of social skills, how would I know where the teaching and nurturing of those skills would cross the line into the “repair” mode? Where lay the boundary between providing my son the galaxy of services and opportunities he needed and — well, bombardment? He was barely five years old and was putting rigorous 6-1/2 hour days at school in a developmental kindergarten with afternoon inclusion, speech therapy 3 days a week, adaptive PE, one-on-one occupational therapy. Yes, we could make the rounds of after-school supplemental therapies, tutorings and social activities. But I began to have serious, serious misgivings about what sort of message it was sending.

Something is “wrong” with me.

On the day I first became a mother, our pediatrician told me: “Trust your instincts. You know more than you think you know.” Now I chose to follow that advice; I pulled Bryce out of everything but school. I did it because I came to believe that the manner in which he was taught, the pace at which he was taught and the context in which he was taught were as equal parts of the skill-building equation as the skill itself. Force-feeding without creating relevance would bring forth a gag response. The environment in which he would best be able to learn was not one of incessant pressure and demand. More important for me to create that foundation where self-esteem could flourish and he could come to genuinely like himself and be comfortable inside his own skin. With those underpinnings, I believed the social skills would come. But they would come on his unique timetable, not one that I or others had lifted from books or charts or comparisons to other children. I wasn’t at all sure I was doing the right thing, but with Bryce there did seem to be a direct relationship between pacing and his self-esteem. His “down” time was actually his “recharging” time; it enabled him to exercise some choice over a portion of his life and consequently, to be willing to give 100% at school. “Bravo,” said his paraeducator. “You wouldn’t believe how many exhausted kids I see. Like all kids, they need time to just be kids.”

Bryce, who at 13 has succeeded at social interaction in settings ranging from team sports to school dances, is a grand example of what a child with autism can achieve when healthy self-esteem leads the way. We are ten years into this expedition. How many, many miles along the spectrum we have traveled to get here, sometimes trudging, sometimes tripping the light fantastic. In hindsight I can see that my relentless reinforcing of his self-esteem was the single biggest factor in his willingness to be nudged out of his comfort zone. It also expanded his comfort zone enormously. He has the jaw-dropping – for any kid – ability to deflect teasing and cruelty with the perspective that the insulter “needs to work on his manners” or “has some growing up to do.”

Teaching social awareness is infinitely easier if you separate and clarify your goals, address only one goal at a time, start small and build upon incremental successes. Remove obstacles (usually sensory, language or self-esteem issues) and throw out pre-conceived, stereotypical measures of what constitutes progress – the definition of which is sure to be a moving target.

Separating goals and keeping them manageable is of the essence, because where messages overlap, you can’t look to your child to be able to sort the primary goal from the secondary one. If you want your child to be a pleasant, involved member of the family at dinner, recognize that several goals are involved in this situation. To isolate the social component, you may need to provide appropriate seating and utensils for him, eliminate foods (his and others’) than offend him sensorily, or make concerted effort to include him in the conversation. Ensure that dinner is not for him an exercise in unpleasant smells and enforced two-bite tastings, lectures about manners and the incomprehensible jabbering of the group. If the goal is socialization, separate it from food goals or fine motor processing goals. I’ve had to walk that walk. At various times in my kids’ lives, they ate breakfast in their rooms. The commotion of the morning routine was too much for them, and the goal at that time of day was nutrition, not socialization. It was a temporary accommodation that lasted a few months, not forever. It was one of many accommodations we made along the way. And let me tell you where all of this patient separation of goals got us. My birthday the year Bryce was 12 found us celebrating as a family in one of the most elegant white-tablecloth restaurants in town. The boys loved it, and I will experience very few moments more magical than watching Bryce stride confidently up to the piano bar, $5 tip in hand, and asking the piano man, “Could you please play ‘Stardust’ for my mom? It’s her birthday.” All the many years of patient acclimation just melted away.

There’s no pill or potion for instilling social capability. It builds, phoenix-like, upon itself particle by particle, day by day. “To the top of the mountain, one step at a time” advises the old proverb. We’re not Moses, so there won’t be tablets at the summit – if in fact there is a summit – but if there were they might look something like this:

Eradicate the thought of ‘fix.’
Build your child’s self-esteem as a foundation for social risk-taking and shield against the unkindness of others.
Create circumstances in which she can succeed in social settings: not intermittently, not just occasionally, but constantly.
Be specific in defining your social skill goals, and beware goals that overlap or conflict.
Keep teaching increments small; build as you go.
Maintain an open-ended definition of what constitutes progress. Two steps forward/one step back is still growth to be celebrated.
Provide a reasonable ‘out’ for risk-taking situations. You want him to try the church choir or after-school Lego club or volunteering at the pet shelter, but if after several sessions he absolutely hates it, let him know it’s OK to stop, and move on to something else. Save “sticking it out” for matters of greater consequence.
Provide lots of opportunities to practice social skills.
Instill flexibility in thinking. Not every mistake or disappointment is a Big Deal; emotions exist in degrees.
One word, three times over: patience, patience, patience. Just as it is for you, some days will go better for your child than others will.

Understand and keep in mind that fitting into our social world requires a tremendous amount of effort on your child’s part – always.He’s trying the best he can with the abilities and social understanding he has. Despite the social nuances he doesn’t get, what he does know is when you believe in him and when that belief falters.

“To the top of the mountain, one step at a time.” When my son Connor was young, one of his favorite stories was that of Sir Edmund Hillary and his Sherpa guide Tenzing Norgay, the first people ever to reach the summit of Mt. Everest. We talked a lot about the controversy over the years regarding which one of them had actually put their foot on the top first. Although there is much speculation that it was actually Tenzing and not the more famous Sir Edmund Hillary, Tenzing’s son Jamling told Forbes magazine in an interview in 2001: “I did ask him…and he said, ‘You know, it’s not important, Jamling. We climbed as a team.’” Like Tenzing, you’ve been climbing this mountain for many years. Like Hillary, it’s your child’s first time up. Be his Sherpa, knowing and helping him see that the view along the way can be spectacular.

PLEASE HELP ME WITH SOCIAL INTERACTIONS

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