IF YOU NEVER START
By Ellen Notbohm
As published in Autism Asperger’s Digest, November-December 2005 

“If you never start, you’ll never have to worry about stopping.” That’s my parents, talking to the teenage me about smoking. 

“If you never start, you’ll never have to worry about stopping.” That’s my kids’ first pediatrician, talking to me about spanking. “Once you start, where do you stop?” he adds ominously. 

“If you never start, you’ll never have to worry about stopping.” That’s me, endlessly explaining to people why I never go to Starbucks. 

You can see that this adage is at work in my life. But it’s not always a conscious choice. Sometimes it is intuitive. It is the reason we never had Nintendo, Gameboy, Play Station or any other video game system in our home. There was no actual list in my head of reasons why we shouldn’t let our boys indulge in this very common contemporary pastime. I just let inertia do its job – we didn’t have one and if we never got one we could just bypass all the fights about which games were OK, how much time they could spend on it, was it interfering with homework, and of course the expense of the never-ending demand for new games and upgraded equipment. To be honest, raising two boys with non-standard needs constantly taxed my stamina to the outer limits and “one less thing on the plate” was frequently an appealing option. 

Some years later our original pediatrician had retired and we were getting to know a new doctor. He really got my attention with his reaction to an offhand comment I made about not having any video games in the house. 

“That is probably the single most important parenting decision you ever made for these kids.” 

Wow. I didn’t know him well enough then to know if hyperbole was his style or if this statement was sincere in its incredible weightiness. The most important parenting decision I ever made? More important than moving to a new home to get them into better schools? More important than not allowing smoking in our home? Double wow. At the time, I ended up merely accepting it as a nice compliment. But over the years my mind would wander back to it: “....most important parenting decision you ever made for these kids.”  

Seven years down the line, it finally occurred to me to ask him what exactly he meant, especially the qualifier, “for these kids.” Did he in fact even remember saying it to me? 

I can well believe I said that, came the answer. And I would stand by it. And here is why:  Video games – all video games, not just the violent ones - magnify the issues of autism and ADHD.   

In that one sentence, he made me see video games in all their unvarnished glory: immersive, addictive, over-stimulating, socially isolating, sedentary, non- productive, unrealistic language vacuums that frequently reinforce and reward socially unacceptable behavior.  

Those are all ugly, compelling arguments against video games, but the bottom line is much more subtle, even insidious, and it is this:  No parent or teacher, says my doctor, can compete with the sheer pace of a video game. Real life simply does not and cannot move that quickly, reward that quickly, wipe-out-and-start-over that quickly. The artificial expectation it sets up for the child is insurmountable. It’s never enough. By contrast, life in “real time,” at the speed of real life, is boring. The child, already over-stimulated, seeks even more stimulation. The child who is already hyper becomes yet more hyper. 

If your child has autism, it’s rather breathtaking to confront just how thoroughly and actively video games work against the very challenges we are trying to surmount. Let’s go through the list. 

LIMITED, UNBALANCED SENSORY INVOLVEMENT
Video games overstimulate the visual and auditory senses, while offering no involvement or development of the other five senses. The drum-like repetitive action and artificial sound encourages perseveration. 

Have you heard the argument justifying video games as being good for hand-eye coordination? There are about a jillion activities that do so much more constructively:  drawing, puzzles, blocks, Legos, dressing dolls, digging dirt, Nerf sports, kitchen pursuits. These activities can be just as engrossing as video games. When my kids were little, they would beg to play “water cups.” They entertained themselves for as much as three hours at a time with a trickle of water from the sink or outdoor hose. They would pour back and forth between all sorts of containers, mix it with whatever was close by (dirt, paper napkins, leaves), sing, add shaving cream or food coloring, get their clothes and hair wet to see how it felt. Visiting cousins and friends were just as intrigued, although one was incredulous:  “My mother would never let me do this - I’d get dirty!” I put her in a swimsuit, assured her that she would leave as clean as she came – it would be our “dirt-y” little secret. Once she got started, I literally could not tear her away, even when Dad showed up. 

INACTIVITY
“Get up offa that thing!” shouts James Brown’s 30-year-old song. You can’t turn your head and sneeze anymore without confronting alarming information about obesity and other organic diseases that are escalating sharply in today’s children who aren’t active enough. But there’s more: a growing body of evidence that suggests cognitive learning is directly related to physical activity. Schools that incorporate physical activity programs see positive effects that include increased concentration, improved math, reading and writing scores and fewer disruptive behaviors. In my own life, I was astonished to see Bryce make marked leaps in reading, math and general cognition immediately after learning to swim, and later, to ride a bike. I am 200% convinced of this link, but I also know that finding physical outlets that our ASD kids can wholeheartedly enjoy can take more searching, planning and facilitating that it does for NT kids. Actually, that’s another whole column in a future issue. For now, start thinking about non-team sports and non-competitive active pursuits, and be sure to read Sarah Spella’s Ask the Experts column, about adapted physical education, in this issue. 

OBSCURES THE LINE BETWEEN FANTASY AND REALITY
Distinguishing between fantasy and reality requires the ability to engage in perspective-taking, something children with autism are notoriously lacking. For many of our kids, that inability has ominous implications as applied to Ninja-chopping, motorcycle-crashing, machine gun-blasting video games – or any other “harmless” fantasy portrayal. Do you dare imagine what Wyle E. Coyote REALLY looked after he went over that cliff with a cache of dynamite? 

Last year Bryce’s class had an assignment wherein each student wrote and presented a short speech “in character” as a famous ancient Greek. Bryce chose Alexander the Great (“the only name on the list I could pronounce,” he said, only half-joking.). His classmate Michael (also on the spectrum) chose Zeus. When I commented that Zeus was a mythical person as opposed to Alexander who was quite real, Bryce’s startled reaction was:  “What? Does Michael know this?” I met up with Michael’s mother at school shortly thereafter and relayed the question to her. Her reaction:  eyes rolling a bit sadly as she replied, “Does Michael ever know the difference between fantasy and real?” 

It’s something to consider if your child suffers from nightmares – and can’t quite tell you why. Temple Grandin has stated frequently that she avoids movies with graphic depictions of violence because, as a visual thinker, the images sear permanently into her brain and she cannot get rid of them. 

REWARDS UNACCEPTABLE, ILLEGAL BEHAVIOR
Nor is it realistic to expect the child with autism to understand that the violent or destructive action in a video game is “for entertainment purposes only.” This is the part I find most scary. Games whose object is to blow up, blow away or lop body parts off of opponents reward successful violent behavior. The child receives instant positive reinforcement for killing and maiming. Worse, as opposed to TV, he is participating in the violent activity rather than merely watching it. Worst case scenario: these are behaviors that, if emulated, can later land him in jail. The nuances of law enforcement are going to be enough of a challenge for him without the added handicap of pondering helplessly why it was OK in his favorite game but not OK on the actual corner of 5^th and Elm. 

SOCIAL SKILLS VOID
Think of all the elements that go into healthy social development. Ask yourself if video games fulfill any of these for your child:  engaging in positive interpersonal interactions, building a sense of worth and self-definition, expressing himself through creative thinking and activities, being a meaningful participant in a group. Are video games helping him learn to impose the self-discipline needed to structure his time, set reasonable limits, prioritize tasks? Are they helping him learn to distinguish and choose gracefully between wanna-do’s and hafta-do’s? Or between privileges and rights? 

LANGUAGE-DEVELOPMENT BLACK HOLE
Language development is among the most urgent of issues for many, many children with autism, and in this regard, there are few worse friends than the video game. Played in isolation, there is no useful language happening at all. Even in parallel play with a friend or sibling, attention is fixated on the screen and whatever minimal verbal exchange that takes place generally relates only to what is happening on the screen. 

A ROLE IN REGRESSION?
Does your child demonstrate social or cognitive regression following summers and extended school breaks? If he’s whiling that time away in front of a screen, it might be useful to question the role of video games. All skill development, whether it’s reading, making conversation, taking turns at games, hitting a tennis ball, baking brownies or tracking down the evil Super Mario double, takes practice. Extended time off from school shouldn’t be time to abandon social and cognitive learning. Do the math:  a child who is in school 6.5 hours a day, 175 days a year is spending only 22% of his 16 waking hours/365 days in that school. The other 78% of his time, the instruction is up to you. 

A child’s job is to explore the world. For our kids with autism, that exploration may be a little more tenuous, a little more treacherous. But explore they must and that means touching, talking, tasting and trekking, discovering. For all time before the 20^th century, this happened without the aid of a video screen. Long before my doctor had anything to say about it, the great writer Johann Wolfgang von Goethe did:  “Talent develops in solitude, character in the full current of human life.” 

© 2006 Ellen Notbohm

Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew, a ForeWord 2005 Book of the Year Honorable Mention winner and recipient of iParenting’s 2005 Media Award, and Ten Things Your Student with Autism Wishes You Knew, a 2006 iParenting Media Award recipient. She is co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, winner of Learning Magazine’s 2006 Teacher’s Choice Award, and a columnist for Autism Asperger’s Digest and Children’s Voice.  For article reprint permission, to learn more or to contact Ellen, please visit www.ellennotbohm.com

TEN THINGS EVERY CHILD WITH AUTISM
WISHES YOU KNEW
by Ellen Notbohm 

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute – the inconsistency. There is little argument on any level but 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 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 characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood. 

Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism 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 on the spectrum. Child or adult, each will have a unique set of needs. 

Here are ten things every child with autism wishes you knew: 

1.  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 just fat (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 single characteristic, you can make that known. 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? 

2.  My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday 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 loudspeaker booms today’s special. Musak 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 3 with ammonia….I can’t sort it all out. I am dangerously nauseated. 

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. 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’s glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, 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.

3. Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. 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: “*&^%$#@, Billy.  #$%^*&^%$&*………” Instead, come 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. 

4. 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 lost on me. 

5. 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, TV, 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, helps me manage my time and meet your expectations. Here’s a great website for learning more about visual schedules: www.cesa7.k12.wi.us/sped/autism/structure/str11.htm. 

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. 

7. 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. 

8. Please 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, it may be that I’m 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 say “Are you OK?” 

9.  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, activities. A pattern 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 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. 

10. If you are a family member, 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. 

And finally, three words: Patience. Patience. Patience. 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? 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?   

Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew, a ForeWord 2005 Book of the Year Honorable Mention winner and recipient of iParenting’s 2005 Media Award, and Ten Things Your Student with Autism Wishes You Knew, a 2006 iParenting Media Award recipient. She is co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, winner of Learning Magazine’s 2006 Teacher’s Choice Award, and a columnist for Autism Asperger’s Digest and Children’s Voice.  For article reprint permission, to learn more or to contact Ellen, please visit www.ellennotbohm.com

About Edward C. Fenske, M.A.T. Ed.S

Helping Your Child with Autism Acquire and Use Language Skills

Impairment in the development of language and communication skills is a defining characteristic of autism spectrum disorder (Diagnostic and Statistical Manual of Mental Disorders American Psychiatric Association, 2000) and parents are very concerned about their child’s acquisition of language skills. The very title of the book Let Me Hear Your Voice (Maurice, 1993) expresses one parent’s anguish over her child’s inability to talk. The first scientifically validated procedure for teaching language skills to children with autism occurred in a structured therapeutic setting

Incidental teaching, developed by Hart and Risley (1968), is a procedure that helps children learn to initiate requests for items of interest. Research on the use of incidental teaching for language instruction of children with autism demonstrates that this procedure promotes generalization and spontaneous use of new skills  (McGee, Krantz, & McClannahan, 1985).

Detailed descriptions of the use of incidental teaching are available in other sources (Hart & Risley, 1982; Fenske, Krantz, & McClannahan, 2001). This article will provide the reader with an overview of incidental teaching and a few examples of ways to use this procedure for language instruction. The components of incidental teaching are: (a) obtaining materials of interest to the child and arranging them in ways that promote child initiations, (b) waiting for the child to initiate for an item of interest, (c) requesting or modeling a request with more elaborate language, and (d) providing the child with the item of interest.

Parents can increase their child’s interest in materials by selecting or purchasing favorite snacks, toys, or activities and placing them where they are visible but not accessible by the child. For example, place the Marbleworks® Deluxe Set on a high shelf that is beyond your child’s reach.

The next step is often the hardest. You have to wait for your child to make an initiation. Don’t ask, “Do you want Marbleworks?” Asking questions or giving directions will not help your child learn to spontaneously make requests. The way in which your child initiates will depend upon his current skills. Non-verbal children may initiate by reaching. Children with more verbal skills might request an item with a word or phrase (e.g., “Marbles” or “Play marbles”). You can encourage initiations by glancing at or manipulating the toy, but afterwards wait until your child initiates for it.

Your child indicates his interest in an object by making a non-verbal or verbal initiation, and now you have an opportunity to teach him to use language or to use more language. Consider your child’s current language skills when requesting elaborated language.  If the initiation was non-verbal, request a sound (e.g., Say, “/m/”). If he initiated with a single word, ask him to say a phrase (e.g., Say “play marbles” or “marbles please”). Some children may already have functional language skills in their repertoires, although they seldom use these skills. In this case, you may be able to request elaborated language by simply asking, “What do you want?”

After he provides the target language response, give him the item of interest. In incidental teaching the reward is the object for which the child initiated.  This procedure teaches children the function of language. They learn that language is important because it affects people and events in their daily life. If you are thirsty and say “juice” you probably will get something to drink. One word of caution, if your child initiates by having a tantrum, do not give him the item of interest. He may learn to communicate by displaying problem behavior.     

References

• American Psychological Association. (2000).  Diagnostic and statistical manual of mental disorders (4^th ed. Text rev.) Washington, DC: Author.

• Fenske, E.C., Krantz, P.J., & McClannahan, L.E. (2001). Incidental teaching: A not-discrete-trial teaching procedure. In C. Maurice, G. Green, & R.M. Foxx (Eds.), Making a Difference: Behavioral Intervention for Autism (pp. 75-82). Austin, TX: PRO-ED.
• Hart, B., & Risley, T.R. (1968). Establishing use of descriptive adjectives in the spontaneous speech of disadvantaged preschool children. Journal of Applied Behavior Analysis, 1, 109-120.
• Hart, B.M., & Risley, T.R. (1982). How to use incidental teaching for elaborating language. Austin, TX: Pro Ed.
• Lovaas, O.I. (1977). The autistic child:  Language development through behavior modification. New York: Irvington.
• Maurice, C. (1993). Let me hear your voice: A family’s triumph over autism. New York: Knopf.
• McGee, G.G., Krantz, P.J., & McClannahan, L.E. (1985). The facilitative effects of incidental teaching on preposition use by autistic children. Journal of Applied Behavior Analysis, 18, 17-31.