Issue 63 April 2017

The real world is also a spectrum, one that dwarfs the autism spectrum,
and it is the ultimate shape shifter.

The real “real world” you want for your child with autism, and how to get there

The mid-1990s weren’t exactly the Dark Ages of autism, but families like ours hard-landed on a spectrum unthinkable today: no websites, apps, social media, sensory-friendly events, autism curriculum, tagless clothing (hey–that’s important!). While resources were sparse, dumb clichés were as plentiful as they are today. One of the most prevalent was that children with autism “are off in their own little world” and that we needed to help them “join the real world.”

The implication being that their own world wasn’t real?

I still hear it, and I still struggle with it. “They’re off in their own world.” Well, who isn’t? Whose personal interaction with the world isn’t real?

Even in those early days when I knew nothing about autism, I knew that my son’s world was as real to him as mine was to me. To deem my sensory interpretation of the environment and my social thinking more real than his seemed arrogant, mean and worst of all, obstructive to his learning. As with so many clichés, “the real world” is just a lazy shortcut around the harder work of defining what specifically we need to teach a child in order to guide him or her to meaningful adulthood.

“Join the real world” is nearly always a rebuke, coming across as grinding and condescending, not a joyful invitation to enticing opportunities and engagement. To a child with autism, how judgmental must it feel, the inference that the experiences of your mind and body aren’t real? How different, even exciting, it would feel if “his own little world” were viewed not as a deficit, but as a legitimate developmental portal for his  education and growth.

Think back on your own childhood, adolescence, young adulthood. Remember how belittled you felt when someone would say, “You don’t know what real love is,” or “You don’t know what real work is,” or “You don’t know what real pain is.” Then remember that each child with autism knows what he or she thinks, feels and experiences, and regardless of how vexing or odd or wrong it seems to you, it’s real to him or her. It’s that child’s real world.

So, if it makes no sense to a child with autism to tell, ask or force him to join the real world (meaning our version of real) because he’s already there, how do we put our goals of guiding him to meaningful adulthood in a perspective that motivates and entices him?

We are devoted to the concept of autism as a spectrum. The so-called real world is also a spectrum, one that dwarfs the autism spectrum. We need only look across the street, across town, across the country, across the planet to see how the definition of “real world” is the ultimate shape shifter. The real world is one of constant change, and that’s the world for which we must prepare our children.

The challenge of teaching our concrete-thinking children to thrive in world of constant change begins with how we frame our desire for him to “join the real world.” Can we drop the meaningless adjective “real” and invite him into a larger world, offering our encouragement to explore and discover wonderful things? Can we tell him all about how that world needs him and his unique voice and talents, assuring him that a meaningful place in that world is his birthright? Or will “join the real world” be heard as admonishment for not trying hard enough, received with anger and shame for not being good enough?

A mom once asked me how she could help her son reach for the stars. Good on her for wanting the real world and then some! Here’s the trajectory. Root to rise: first we ground him in a real world of self-confidence and optimism. We create that real world by giving him goals that are clear, relevant, incremental, developmentally appropriate and attainable. We give him the tools, problem-solving strategies and emotional support to achieve those. We teach him to reach for realistic achievements and qualities, measuring his progress only against his own prior achievements.  We adjust the goals to reflect his acheivements and the constant change around him. And we assure him constantly that his best efforts will always be good enough for us, that we care more about the sincerity of the effort than about any outcome. Bryce didn’t even know what a valedictorian was until shortly before he became one. He had simply done his best, because that was real enough for him—and for us. The transition to college made clear that constant change would be the new real. The transition from college to workplace—the real real world?—brought yet more seismic change. But for all the aggravations and heartaches of the so-called real world, he finds it exciting and doable. Each setback and success in the real worlds along the way reinforced his sense of “I can do this.”

Every day in ways large and small it comes home to me that a constantly changing world is the truest definition of real world. This is undeniably a challenge for people with autism who thrive on predictability, routine and familiarity. Truth be known, it causes me my share of anxiety. But occasionally I get a real chuckle out of it. I recently read an article claiming that 65% of kids today will grow up to work in jobs that don’t exist yet. I shared that statistic with a colleague. His response?

“Wow. Unreal!”

© 2017 Ellen Notbohm
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On my blog

*    “His speech is delayed. Should we delay starting school?”
*    “When leaders fail us, where will our help come from?”
*    Bullying is not a “thing,” and here is what we must do
*    What our children with autism teach us, in six words or less
*    “Autistic tantrum?” No such thing as “no reason”
*    Alike, not less: 50 ways your child with autism is like all children

New translations in the pipeline

Polish, Arabic and Turkish translations of Ten Things Every Child with Autism Wishes You Knew are in the works. I’ll announce publication on my website and social media.

Both of my Ten Things books as well as 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s are also now available in audio editions, through Audible or Amazon.

 

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