Ten Things Every Child with Autism Wishes You Knew

Chapter Eight
Help Me Be Social

You make it look easy, but being “social” is very hard for me. What is obvious about it to you is not obvious to me—it’s baffling and confusing. It may look like I don’t want to play with other kids on the playground, but that may be because I don’t know how to join in or I can’t follow how fast their ideas change minute to minute. If I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know what to say. In school, working in a group may feel uncomfortable, since I do better when I work by myself.

Don’t assume that because I may be smart that I understand what it means to be social. I can’t learn it just by watching others. Teach me everything I need to know.

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We can be blunt with each other here. Kids at almost any point on the spectrum often stand out as socially offbeat. The heartbreak it causes, to the child and to the parent, stirs in many parents an intense need to fix that facet 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 kids with autism were curious, outgoing, motivated learners, we could cultivate social intelligence curriculum-style.

Too often, our kids aren’t like that, and social awareness isn’t a set of concrete, itemized skills. Basic manners (please and thank you, use tissue, not sleeve, wait your turn) can and should be taught, regardless of the child’s level of function, but learning to be at ease among others in the bustle and nuances of daily life is infinitely more complex. Think about all the different physical venues and social environments within which you interact in daily life. Each has a web of social behaviors within which we judge each other, and each has its own social rules that are generally known in varying degree but rarely taught.

Despite what you may read or hear from sources and contacts both professional and personal, social skills (behaviors we want our child to exhibit) are not the end product of what we need to teach our children. The ultimate goal of helping our children learn to navigate the ever-shifting social world is for them to become socially competent – able to walk into any social situation and figure out what to say, what to do, and how to manage it internally and externally. Focusing on social competence rather than teaching social skills is a perspective now recognized in educational and therapeutic circles and espoused for its emphasis on social-emotional intelligence as a determining factor in a child’s success in life.  As Bryce’s high school principal stressed to his students over and over, “Lack of social competence will get you fired from a job faster than lack of cognitive skills or intelligence.”

Breaking down the synergistic world of social-emotional intelligence isn’t easy or natural for many adults, given that most of us were left to learn it intuitively. Today we have success-oriented books and blogs with topics like “learning to work in a group” or “four steps to joining a conversation”, and this is exactly the type of teaching most autistic kids need. Just as we all had to learn to walk before we could run, we must teach our children to “think social” before they can act social, and do that with understanding and positive intent, not just by rote repetition or in fear of consequences. To be a strong social thinker your child will face the challenge of factoring context and perspective into his actions—to consider the physical, social, and temporal aspects of his surroundings, to take into account the thoughts and feelings of others, to use shared imagination to connect with a play partner, and to comprehend that others have favorable or not-so-favorable thoughts and reactions to him based on what he says and does in a particular situation. Social-emotional intelligence is the source from which our social behaviors and social competence springs, and it may be a bigger determinant in a child’s long-term success in life than cognitive intelligence.

Parent or teacher, home or school, teaching a child with autism to be a social thinker, to observe and navigate a social situation, begins with chucking any assumptions you may harbor about his ability to absorb social sensibility by simply being around and observing socially adept people, or that he will somehow, someday outgrow his social cluelessness. Some of today’s education systems and the various standards that guide their operations, do incorporate socially-based concepts into their curriculum standards. Unfortunately, at this writing some still operate on the flawed supposition that all children enter the world with an intact social processing brain and on a presumed social developmental progression. It makes no sense (and is grossly unfair to the child) to respond to a child’s social snafus based on such assumptions and then blame his autism when our attempts to teach don’t register with him. What our children need is for us to shift perspective and start building their social awareness at its roots.

When we say we want our child to learn social skills, we’re really reaching for something grander. We want him to be able to fit into the world around him, to function independently at school, in the community, at work, and within his personal relationships. Bryce stated this goal from early adolescence and, he told me, it had always been his goal, long before he could articulate it or even put a name to it in his childhood thoughts. More than playing by a rule book, being social is a state of confident being that grows with careful nurturing of social awareness and social connection skills, starting when a child is very young:

• Joint experience: being able to make basic connections with other people and learning that others are vast and beneficial information sources.
• Perspective taking: being able to see and experience the world from standpoints other than your own, and to see these different perspectives as opportunities to learn and grow.
• Flexibility: being able to roll with unforeseen changes in routine and expectation, being able to recognize that mistakes are not an end result but a part of learning and growing, and that disappointments are matters of degree.
• Curiosity: drawing motivation from thinking about the “why” behind things—why something exists, why its existence is important, why others feel the way they do, and how it reflects back and matters to us.
• Self-esteem: believing enough in your own abilities to risk trying new things, 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 them than you.
• Big picture thinking: appreciating that we use our social brains and our social know-how whether or not we are interacting with others. We read stories, trying to figure out the motives of characters and predict what they will do next. We replay situations in our head, deciding whether or not we acted appropriately. Your child may tell you, “I don’t care about being social; I’m happy by myself.” He may mean it in the moment, and many people do generally prefer solitude to socializing. But it’s also true that some of our kids adopt the I-don’t-care attitude to deflect the pain of caring very much and not having the knowledge, skills, and support to overcome their social barriers, and in doing so, be able to achieve their goals and dreams in life.
• Communication: understanding that we communicate even when we are not talking.

Michelle Garcia Winner coined the term “Social Thinking” in the mid 1990s, and is one of the leading voices in the field of social-emotional learning. In one of her many books on Social Thinking^®, she outlines the Four Steps of Communication that unfold in linear sequence, within milliseconds, and often without conscious thought:

• We think about other people’s thoughts and feelings as well as our own
• We establish physical presence so people understand our intention to communicate
• We use our eyes to monitor how people are feeling, acting, and reacting to what is happening between us
• We use language to relate to others

Did you notice that language enters the communication equation only as the last step? And yet it’s where, as parents and teachers, we typically place emphasis. Teaching only step four in the absence of the other three results in your child or student being inadequately equipped, vulnerable, and likely to be less effective, less successful in her social communication. Winner calls this emphasis on teaching at the level of behavior “teaching in the leaves” when what our autistic kids need is social education that starts at the roots.

It’s equally important to imbue your child with a sense of the role nonverbal communication plays in his social encounters. The junctures at which the subtleties of social interaction can go awry fall into three broad categories:

• Vocalic communication: He doesn’t understand the myriad nuances of spoken language. He doesn’t understand sarcasm, puns, idioms, metaphors, hints, slang, double entendres, hyperbole, or 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 expressions, or emotional responses (crying, recoiling). He may use gestures or postures inappropriately and may refuse eye contact. So many of our kids lack even the basic understanding that our eyes are information sources. World-renowned writer and autism advocate, Dr. Temple Grandin, related that she didn’t understand until she was 51 that people send nonverbal communication signals with their eyes.
• 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 many kids with autism or Asperger’s, 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 takes practice, in-the-moment, get-messy, make-mistakes practice (emphasizing that “mistake” is just another word for “practice.”) Unlike the idea that providing a language-rich environment will encourage language development, mainstreaming a child with her typically-developing peers will not bring forth improved social abilities without direct, concrete teaching of social concepts. Without this direct teaching, your child will still bob along into adulthood in that same sea of social miscommunication. Teaching your child to be social is a mosaic of thousands upon thousands of petite learning opportunities and encounters that, properly channeled, will coalesce into a core of self-confidence. It requires you, as his parent, his teacher, his guide, to be socially aware 110% of the time, break down the web of social intricacies, clue him in to the social nuances that are so difficult for him to perceive, and do so in a way that he can understand.

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 to do it without the mindset that he is “less than.” Sending the child a constant message that he is inherently deficient will surely build the wall that prevents the progress we want. Self-esteem, an essential component of social functioning, will not flourish in an environment that sends the message that she’s not good enough the way she is. Some of her behaviors may not be conducive to her social development, but always separate the behavior from the whole child.

With Bryce, I knew from the start that we were in for a long, long trek. On a good day, it meant the routine unfolded pleasantly and productively and we could see progress toward our goals. On a bad day, it meant living and coping not one day at a time, but one moment at a time. On one of those days when the road stretched too far ahead, 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? Barely five years old, he put in rigorous six-hour days in a developmental kindergarten with afternoon inclusion, speech therapy three days a week, adaptive PE, and one-on-one occupational therapy. Yes, we could go on making the rounds of after-school supplemental therapies, tutorings, and social activities. But I had serious misgivings about what sort of message it sent. 

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.” I chose to follow that advice. I pulled Bryce out of everything but school. I did it because I believed that the pace, the manner, and the context in which we taught him were parts of the skill-building equation as crucial as the skill itself. Force-feeding without creating relevance, without building a framework for him to understand the why behind his social behavior, would bring forth a gag response. The environment in which he would best be able to learn would not be one of incessant pressure and demand. My job was to create that foundation where social awareness could flourish and he could develop genuine self-esteem, like himself, and be comfortable inside his own skin. With those underpinnings, I trusted that he would more easily learn social skills on his unique timetable, not one that I or others had lifted from books or charts or comparisons to other children. I wasn’t sure I was doing the right thing, but with Bryce there did seem to be a direct relationship between the pace of teaching, his growing self-awareness, and his self-esteem. His down time was 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 by thirteen had succeeded at social interaction in settings ranging from team sports to school dances, was a splendid example of what a child with autism can achieve when healthy self-esteem leads the way. How many, many miles along the spectrum we traveled to get there. In hindsight I can see that my relentless reinforcing of his self-esteem proved an enormous factor in his willingness to be nudged out of his comfort zone, and to expand that comfort zone.

Teaching social awareness is a step toward social competency and as an overall concept may feel overwhelming, but as with any large task, you’ll be more effective if you separate and clarify your goals, address one goal at a time, start small, and build upon incremental successes. Remove obstacles (usually sensory, language, or self-esteem issues) and throw out preconceived, 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 expect 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 intersecting goals are involved. To isolate the social component, you may need to provide adaptive seating and utensils, eliminate foods (his and others’), smells and sounds that offend his senses, and make concerted efforts to include him in the conversation. Ensure that his time at the dinner table is not an exercise in unpleasant smells and enforced two-bite tastings, lectures about manners and the incomprehensible prattling of the group. If the goal is socialization, separate it from food goals or fine motor processing goals. I’ve had to walk that talk. At various times in my kids’ lives, they ate breakfast in their bedrooms. The commotion of the morning routine rattled them, and the goal at that time of day was nutrition, not socialization. This temporary accommodation, one of many we made along the way, lasted a few months, not forever. And let me tell you where this patient separation of goals got us. The year Bryce was twelve, we celebrated my birthday as a family in one of the most elegant white-tablecloth restaurants in town. The boys loved it, and I will experience few moments more magical than watching Bryce stride confidently up to the piano bar, five-dollar tip in hand to ask the piano man, “Could you please play ‘Stardust’ for my mom? It’s her birthday.” The many years of slow-but-steady acclimation melted away.

There’s no pill, potion, or recipe for instilling social competence. 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 there is a summit—but if there were they might look something like this:

1. Eradicate the thought of “fix.”
2. Build your child’s self-esteem as a foundation for social risk-taking and a shield against the unkindness of others.
3. Focus on social awareness, interpretation and problem solving as the means to developing social skills. Learning to consider and interpret the thoughts and feelings of people in her environment and working to maintain a balance within social situations will smooth the way for generalization of skills across situations and settings.
4. Create circumstances in which she can practice social skills and succeed, not intermittently, not occasionally, but constantly.
5. Be specific in defining your social skill goals, and beware of goals that overlap or conflict.
6. Start at your child’s real level of social processing, not a perceived or assumed one. Some of our kids with advanced vocabularies and elevated IQs fool us into thinking their social abilities are as developed. In most cases, they’re not.
7. Keep teaching increments small. Build as you go.
8. Maintain an open-ended definition of what constitutes progress. Two steps forward/one step back is still growth to be celebrated.
9. Provide a reasonable out for social 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 hates it, praise him for trying, affirm that it’s okay to stop, and move on to something else.
10. Remember that social rules and social expectations change over time and within contexts. A socially appropriate behavior for a child of five may be inappropriate for a teenager. What is okay in the school cafeteria may not be okay in a restaurant or when visiting someone’s home.

Fitting into our social world requires a tremendous amount of effort on your child’s part. He does the best he can with the abilities and social quotient he has. Despite the nuances he doesn’t get, he does know when you believe in him and when that belief falters.

“To the top of the mountain, one step at a time.” One of my son Connor’s favorite children’s books told the story of Sir Edmund Hillary and his Sherpa guide Tenzing Norgay, the first people to reach the summit of Mt. Everest. We talked about the controversy over the years regarding which one of them had put their foot on the top first. Amid speculation that Tenzing arrived at the summit a step or two ahead of the more famous Sir Edmund Hillary, Tenzing’s son Jamling told Forbes magazine 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, your child is making his first ascent. Be his Sherpa, knowing and helping him see that the view along the way can be spectacular.

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from the book Ten Things Every Child with Autism Wishes You Knew, 3rd edition, by Ellen Notbohm (©2019, Future Horizons)
Available at your local independent bookstores and online outlets everywhere
Translated into 26 languages

Winner of the Chanticleer International Book Awards Grand Prize for Instruction and Insight
Grand Prize Short List, Eric Hoffer Book Awards
First place in Psychology, Chanticleer International Instruction and Insight Awards
First Runner-up in Health, Eric Hoffer Book Awards
American Book Fest Best Book Awards finalist
National Indie Excellence Book Awards finalist
Montaigne Medal finalist, Eric Hoffer Book Awards