From the book:
“Ten Things Every Child With Autism Wishes You Knew” by Ellen Notbohm
As a mother of a very young child with autism, one of the first things I learned was that on some days, the only predictable thing about it is the unpredictability; the only consistent attribute-the inconsistency. There is little argument on any level that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal”, but his behavior can be perplexing and downright difficult.
Autism was once thought an “incurable disorder”, but that notion is crumbling in the face of knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging aspects as par of their fulfilling and dynamic lives. Some even seek to do away with the notion of “cure”. In a widely read New York Times article in December 2004, Jack Thomas, a 10th grader with Asperger’s Syndrome, got the world’s attention by stating: “We don’t have a disease, so we can’t be ‘cured’. This is just the way we are.”
Jack and I are on the same page here: when “neuro-typicals” frame the challenges of autism in neuro-typical terms, they unwittingly close the door to the kind of alternative thinking that has everything to do with how far those with ASD can go.
This is the mantra of my column, “Postcards from the Road Less Traveled” (Autism Asperger’s Digest). In a 2005 column, I asked parents to jot down brief descriptions of some of their child’s most challenging behaviors, and then to rephrase them in the positive. Is the child stand-offish, or able to entertain herself and work well independently? Is she reckless, or adventuresome and willing to try new experiences? Is she obsessively neat, or does she have outstanding organizational skills? Does she pester you with endless questions, or does she have a curiosity about her world as well as tenacity and persistence? Why do we try to fix the kid who “perseverates” but admire the one who “perseveres?” Both are forms of the same word meaning “refuses to stop.”
Here’s the one I hate the most: Does your child “suffer from autism”, or does he “live with autism?”
Choose “life” over “suffering”.
The column is called “Postcards from the Road Less Traveled” because my editor, Veronica Zysk, and I thought the connection to Robert Frost’s poem was apt.
Two roads diverged in a wood, and I –
I took the one less traveled by,
And that has made all the difference.
One reader disagreed: “Postcards are from people who are having a good time on a trip. I’m not sure if that’s what you want to portray.”
I think postcards are so much more than that. They let loved ones know you’ve arrived at a certain place safely. The say, “I am thinking of you even though I am far away”, and they share the sights you are seeing with that someone so they can be with you across the distance. They may recount trip-related woes and how you resolved them, hopefully with a bit of humor.
So my answer to that reader is yes, that is exactly what I want to portray, in the column, in this book, and in all my dialogue with parents and teachers. I am having a good time on this trip. The trip has been fueled by hope, possibility, undreamed-of accomplishment (his, mine and my whole family’s) and “return on investment”. But we did not start out from there.
We started with a basically sweet-tempered but nonverbal child who would lapse into baffling episodes of hair-tearing, cat-scratching, furniture-throwing violence; who wore clothes only when socially necessary and who physically backed away from many classroom and playtime activities with his hands over his ears; who laughed at all the wrong times and didn’t seem to experience pain or cold in a typical way.
Bryce was identified with autism by a public school early intervention team at the age of three. I went through five stages of grief in the time it took to end the initial meeting. My older son had been identified two years earlier with ADHD. I already knew about the therapies, the social challenges, the never-ending vigilance-and the exhaustion.
Raw fear motivated me in the beginning. I could not bear to imagine Bryce’s fate as an adult if I did not do everything within my power to equip him to live in a world where I would not always be around. I could not rid my head of words like “prison” and “homeless”. Not for a nanosecond did it occur to me to leave his future to the professionals or to the ephemeral idea that “he might outgrow it”. His very quality of life was at stake, and failure was simply not an option. This is what got me out of bed every morning and drove me to take the actions I did for him.
Jump a few years ahead with me now to the turn of the century. At the school assembly, adorable first graders step to the microphone one after another to answer the question: What would you like to be in the new millennium? “A soccer star!” is one popular response. “A pop singer!”; “A race car driver!”; “Cartoon artist, veterinarian, firefighter”!
Bryce has considered the question carefully: “I think I’d just like to be a grown-up.”
Applause breaks out and the principal speaks deliberately. “The world would be a better place,” he says, “if more people aspired to what Bryce aspires to.”
Here is the gist of what I know to be true. Your child’s autism does not mean that he, you and your family will not lead full, joyous, meaningful lives. You may be scared, but dare yourself to believe this….with a caveat. How much of that full measure we achieve with our kids is greatly dependent upon the choices we make for and about them given their individuality and uncommon character. A memorable passage form Nora Ephron’s story Heartburn has the protagonist asserting that when your dream breaks into a million pieces, you can either fall a part, or you can go get yourself a new dream.
Some of you will be reading this as newcomers to the world of autism. To you I say: autism itself is not awful. Not understanding it, not having people around you who understand it, not getting the help that is surely out there for your child – that can be very awful. You are at the beginning of your journey, and we won’t deny that it’s a long one, will we? And you would not begin any long journey without first learning a little bit about your route. That’s what this book is for – to point out some basic signposts you will likely pass along the way, so that when you do, they will have a familiar look to them and be less foreign and frightening.
Some of you are already well-acquainted with the challenges of autism; sport a few scars too, I’ll bet. This book can speak for you and your child when so many need to hear your message: teachers, parents, siblings, in-laws, babysitters, coaches, bus drivers, peer parents, friends of siblings, clergy, and neighbors. Pass it around. Watch the dominos fall.
This book will equip those around our children with simple understanding of autism’s most basic elements. That understanding has a tremendous impact on the children’s ability to journey towards productive, independent adulthood. Autism is an extremely complex disorder but throughout my experience, I saw its myriad characteristics fall into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. All are crucial. Here’s why:
Sensory processing challenges: It’s inescapable. A child cannot be expected to absorb cognitive or social learning, or even “behave”, when his environment is a constant bombardment of unpleasant sensations and nasty surprises. Your brain filters thousands of multiple-sensory inputs (what you see, what you hear, what you smell, etc.) simultaneously, but his does not. It can provoke the equivalent of twenty-four-hour “road rage” as all those signals jam hopelessly in the brain stem. Think of how you feel trapped in the stifling fumes and racket of traffic with no ability to affect your situation.
Speech/language delays and impairments: Without adequate means of expression, needs and wants will remain unmet. The inevitable result is anger and frustration, not learning and growing. The ability to communicate, whether through spoken language, pictures, signing/semaphore or assistive technology is a bedrock.
Social interaction skills: Elusive and ephemeral, these skills change from culture to culture, and from setting to setting within a culture. But the lack of them can isolate a child to a devastating degree. The child with autism, who truly doesn’t “get it”, paddles against a brutal current in first comprehending, then executing.
Whole child/self-esteem issues: Every last person on the planet is a package deal. We want to be accepted and appreciated for what we are as a whole, not a bundle of traits and quirks to be cherry-picked at will by others. The child with autism does need skilled guidance to achieve a comfortable place in the larger world, but working toward that goal with positive energy and optimism is not the same as “fixing” the child. They already possess much that can be celebrated; we must now go out and love and guide them with the same acceptance of whole self we want for ourselves.
Bryce’s successes are firmly rooted in that solid sense of self-esteem, his hard-won comfort with his physical environment and his ever-expanding ability to express himself. With those pieces in place, social and cognitive learning followed. As his life became easier, so did mine. Each passing year brought deeply gratifying triumphs: the day he swam to a trophy finish in a city-wide swim meet, the day he sang and danced his way through Charlie and the Chocolate Factory as Grandpa Joe, the day he rode his two-wheeler for the first time, the time we worried no one would come to his birthday party and forty people showed up, his elation at making it through his first Scout campout, and his utter euphoria after successfully working up the nerve to ask the girl he’d admired since kindergarten to dance at the sock hop.
And the truth is, in time I came to realize that I would not change him even if I could. I wouldn’t take his autism away. I wouldn’t have him be anything other than exactly what he was.
Though the four elements we’ve just discussed may be common to any children with autism, keep in mind that it is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly, every parent, teacher and caregiver will be at a different point in their understanding of the spectrum. Child or adult, each will have a unique set of needs. Like the millions of pixels that comprise a television image, each person involved is a complicated composite. That’s why there is no single recipe for success and why guiding, educating and appreciating the child with autism will be a continual work-in-progress. There will be little time off for complacency. The famous opera diva Beverly Sills, mother of two special needs children, once said: “There is no shortcut to anyplace worth going.” True – but there is the joy of discovery in the journey. The guidebook is in your hands. Let’s get started.
HERE ARE TEN THINGS EVERY CHILD WITH AUTISM WISHES YOU KNEW:
I AM FIRST AND FOREMOST A CHILD. I HAVE AUTISM. I AM NOT PRIMARILY “AUTISTIC”.
My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you individualized by one trait? Are you heavy (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.
As an adult, you have some control over how you define yourself. If you want to single out a sing characteristic, you can make that know. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it”, my natural response will be: Why try?
MY SENSORY PERCEPTIONS ARE DISORDERED.
This means that the ordinary sights, sounds, smells, tastes and touches of every day that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. Here is why a simple trip to the grocery store may be hell for me.
My hearing may be hyper-acute. Dozens of people are talking at once. The loud speaker booms today’s special. Music whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia – I can’t sort it all out. I am dangerously nauseated.
Because I am visually oriented, this may be my first sense to become over-stimulated. The fluorescent light is not only too bright, it buzzes, and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing – the space seems to be constantly changing. There are too many items for me to be able to focus (I may compensate with “tunnel vision”), like glares from windows, moving fans on the ceiling, and so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.
PLEASE REMEMBER TO DISTINGUISH BETWEEN WON’T (I CHOOSE NOT TO) AND CAN’T (I AM NOT ABLE TO).
It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “(*&%^%%^&_)()_(+**(^&^”. Instead, approach me and speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
I AM A CONCRETE THINKER. THIS MEANS I INTERPRET LANGUAGE VERY LITERALLY.
It’s very confusing for me when you say, “Hold your horses, cowboy!” When what you really mean is, “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is, “This will be easy for you to do.” When you say, “It’s pouring cats and dogs”, I see pets coming out of a pitcher. Please just tell me, “It’s raining very hard”.
Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are usually lost on me.
PLEASE BE PATIENT WITH MY LIMITED VOCABULARY.
It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.
Or, there’s a flip side to this: I may sound like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It is called “echolalia”. I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.# 6:
BECAUSE LANGUAGE IS SO DIFFICULT FOR ME, I AM VERY VISUALLY ORIENTED.
Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.
A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities and helps me manage my time and meet your expectations.
I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.
PLEASE FOCUS AND BUILD ON WHAT I CAN DO RATHER THAN WHAT I CAN’T DO.
Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing”. Trying anything new when I am almost sure to be met with criticism, however “constructive”, becomes something to be avoided. Look for my strengths and you will find them. There is more than one right way to do most things.
HELP ME WITH SOCIAL INTERACTIONS.
It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I might be delighted to be included.
I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, 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 the proper response. Teach me to ask, “Are you okay?”
TRY TO IDENTIFY WHAT TRIGGERS MY MELTDOWNS.
Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, and activities. A patter may emerge.
Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.
Parents, keep this in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.
…….PLEASE LOVE ME UNCONDITIONALLY.
Banish thoughts like, “If he would just ----“, and “Why can’t she ----“. You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it!
Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? It’s also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They had autism too.
The answer to Alzheimer’s, the enigma of extraterrestrial life – what future achievements from today’s children with autism, children like me, lie ahead?
All that I might become won’t happen without you as my foundation. Think through some of those societal rules and if they don’t make sense for me, let them go. Be my advocate. Be my friend, and we’ll see just how far I can go.