Beyond Common Senses

None too comfortable with my newfound identity, I rarely spoke up at our team meetings. Instead, I allowed the trainer's recommendations to seep in as I observed Steven's behavior. There he was, crawling head first into the tight space between the file cabinet and the wall.  I heard his familiar, "eeee".  He was re-directed to sit at the table and he began to cry.  When the trainer placed her hand on his to initiate his response to her instruction, he flinched as though he had been burned.  Still crying, he matched three colored flashcards and was given the instruction, "go play".  He remained in the chair, and rocked it back and forth.  "No, go play," the trainer instructed.  She prompted him out of his chair.  Steven dropped to the ground and wailed as he rolled his small body back and forth on the carpet.  

As I watched this, several images played through my mind like a silent movie:  Steven licking the glass on the sliding window...Steven placing his hands over his ears and pressing hard, leading us to believe he could hear aversive frequencies we did not...Steven crawling into tight spaces and remaining there for several minutes until we prompted him to come out...Steven pulling the heavy blue beanbag chair on top of himself, ensuring that every part of his body was covered...Steven attempting to push his head into my knees as I faced him in our two small chairs during instruction...Steven placing his Koosh ball in his mouth, biting down on it, and tugging hard until sometimes it snapped...  

The whisper stole up into my consciousness:  Steven was seeking specific input from these behaviors.  His body clearly needed something.  Providing Steven with opportunities to receive these sensory inputs might allow us to reach him again, to pull him up from the abyss to interact with us on common ground.  I knew that Steven saw an occupational therapist at a clinic once a week.  I arranged to observe him there, so I could give the whisper fuel, make it louder, convince it to tell me what I needed to know.  

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Two hours after I set foot in the OT clinic, my whisper had built such volume that it practically screamed at me.  I had watched Steven bounce hard on a trampoline while the therapist held his hands and jerked his body up and down in a manner that appeared very rough.  To my amazement, Steven was laughing hysterically, and made nearly continuous eye contact with her during this activity.  I observed as she conducted joint compressions by firmly gripping Steven's ankle and pushing up into his hip. When it was time for Steven to sit at the table, she placed weighted bean bags across Steven's lap as he searched for trains in a bean bin.  He attended for 4 minutes, which was twice as long as our sittings at home.  

The most important lesson I learned that day completely contradicted something I had known for years:  instead of having five senses, as I had been taught in grade school, we had more! These additional sensory processes shed light on Steven's behaviors:

Tactile Sense:  relates to the body's sense of touch.  Some children are under-responsive to tactile inputs and may appear to have a very high tolerance to pain.  Other children are over-responsive to tactile inputs and may avoid certain textures, resist haircuts, (as Steven did), and become very irritated by clothing tags.  Could an atypical sensory system be the reason Steven constantly removed his shoes and socks?  His tiny feet were often dirty, and dotted by bruises, scrapes...even a splinter.  

Vestibular Sense:  involves our sense of movement and gravity.  Some children over-react to vestibular input, making swinging or jumping on a trampoline feel scary and aversive.  Steven appeared to have an under-reactive vestibular system:  he was constantly in motion!  Running, jumping, climbing to the very top of the jungle gym...Steven often didn't stop until he fell asleep in his high chair, his sticky fist still grasping the Top Ramen noodles he selectively ate.  

Proprioceptive Sense: refers to a person's subconscious awareness of body position.  Children with impairments in this sense often appear clumsy and lack fine motor precision.  Steven's behavior was inherently disorganized.  He was a messy eater, and often failed to get his food into his mouth.  Instead, it ended up on the floor, stuck to his chin, or worse, matted into his hair!  Steven was also unable to use an appropriate grasp on a marker.  Perhaps deficits in this area also explained his desire to squeeze his body into tight spaces...he craved the pressure.  

This information would prove vital to my future work with Steven.  My whisper, now informed by occupational therapy research, directed me to give him what his body craved.  I felt that sometimes he felt as though his skin crawled with an aversive prickle which distracted him from learning and interaction.  If I administered the antidote to this affliction, perhaps I would reach him once more, and achieve the elusive connection that I was becoming so addicted to.  

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I closed the door to the small downstairs bedroom that served as our therapy room.  Steven had bounded ahead of me, and had slid down the carpet-covered stairs on his bottom, all the while shrieking like a banshee.  "Eeeeeeee!"  It was his happy, albeit over-stimulated sound.  As I set up the first activity, I watched as Steven climbed onto the bed, and began to jump on the mattress, hands flapping, hair flying, he jumped harder and harder until I had to stop him.  

He protested by whining and trying to evade me, but I caught him in my arms and hauled him to me.  I sat on the floor, and sat him in front of me, with his back to my chest.  Then, the soft rustle of my whisper directed me to wrap my arms around Steven, and curl his body into a ball. With his back still to me, I gripped his knees, pulled his whole body into mine and lifted him off the ground.  I squeezed him, almost too hard, I felt.  After 10 seconds, I felt a nearly imperceptible change in his energy level.  I immediately released him and then...I waited.  Steven took my hands and placed them on his knees, encouraging me to squeeze him again.  "More?"  I asked.  I squeezed again, felt his body give an internal sigh of relief, and then let go. Steven did not move.  I felt that I should direct him to the table and observe whether his calmer state improved his accuracy on the current program.  As I moved to stand up, I was rewarded once more by the little boy who repeatedly vanished and re-appeared at the whim of his autism.  

Steven was looking straight into my eyes.  He tugged at my hand and placed it on his knee. Then he brought his chubby toddler hands up into an unmistakable gesture:  "More".   

Engaging the Enemy

The water flowed like liquid silk across his hands.  He placed his face in the water and it was like communicating with a whisper.  Hushed sounds filtered through...the hum of the vacuum...the whir of the the microwave.  Often these sounds were painful to him but with his face and arms immersed in the cool clear medium in the sink, the aversive noises were muffled.  

Something stomped nearer and nearer, with a quick pace, and then abruptly, he was yanked hard out of the sink.  "Steven!"  The familiar comfortable lady had a strange expression on her face.  It scared him.  He emitted a lonely wail, "oooooo."  The lady who cuddled him and fed him was making loud painful sounds at him.  He did not understand what she said.  He began to cry.  The lady tried to hold him close but the sensation was smothering and tight.  It hurt.  He wriggled free and ran to the sliding glass door.  It was closed.  He pressed his face to the glass and let the smooth predictable feel of the glass soothe him.  

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"Randy, he could have drowned!  He had half of his body in the sink, and the bathroom is flooded!  I didn't even know he knew how to turn the faucet!"  She hung up the phone.  Randy, on the other end, could do nothing but experience an increasing sense of helplessness as he watched his son drift farther and farther away from them.  

Jane was upset.  She understood that Steven had autism.  She did not, however, understand Steven.  Every instinct she had for dealing with him seemed to be wrong.  Why did her son do such unusual things?  And why didn't he respond to her comforting the way his older brother did?  She looked at her beautiful baby boy, who knelt in front of the sliding door licking the glass, and felt something inside her heart tear.  It was just too much.  She had quit her job to become the full-time manager of Steven's program.  She spent her days scheduling behavioral aides from the agency and religiously trying to fill any absences to ensure that Steven received the magical 40 hours of ABA therapy that the research prescribed.  

No matter how little sleep she had received the night before, no matter how many hours she had spent sobbing in the bathroom so as not to disturb Randy's slumber, she answered the door with a smile.  They were her saviors.  They knew what to do, how to help Steven.  The progress he had made over the last three weeks had been so slow, and he was so very far behind.  And when the door to the little room downstairs squeaked shut, she struggled to ignore Steven's tantrums as he adjusted to his rigorous schedule.  

The most recent program involved something they referred to as PECS (Picture Exchange Communication System).  The trainer had introduced small laminated cards with line drawings of various items:  a Skittle, a pretzel, a juice box, a Koosh ball.  The target behavior was for Steven to request desired items by handing the card to an aide.  Progress had been slow.  It appeared that Steven did not associate the line drawing with the actual item, hence the trainer suggested taking photos of the items instead.  Over and over, the aides worked on the skill. Steven's responses were so inconsistent that they were considering placing the program on hold.  

As she contemplated the probability of Steven learning this behavior, there was a crash from the kitchen.  She rushed in and was greeted by the sight of trash strewn across the floor.  Steven flapped a red wrapper in the air and made a repetitive sound, "Eeeee!"  He was covered in coffee grounds.  With a heavy heart, Jane turned to reach for the dustpan.  She felt a gentle push against her knee.  Steven held the red bit of trash and pressed it against her.  As her eyes focused on what he held so tightly, a novel feeling rose up in her chest.  She hesitantly held out her hand.  As he pressed the discarded Skittles wrapper into her hand, she recognized the new feeling...it was hope.      

Lesson 2: How to Conduct a Discrete Trial

The war on Steven's autism began in earnest in a small downstairs bedroom.  On this first day that I would work with Steven alone, I felt a twinge of anxiety run through me.  Would I be able to wrestle the target behaviors from the small boy who sat with his back to me, rocking his body to a rhythm only he could discern?  As I reviewed the program binder, which listed 25 teaching protocols individualized to Steven's needs, I felt daunted.  We were starting at a level I had not even recognized existed.  

Examples from Steven's Program List:

1. 2-D Identical Matching

2.  1-Step Gross Motor Imitation

3.  1-Step Non-Verbal Imitation with Objects 

4.  Come Here 

Following the discrete trial protocol we had been trained in, I prompted Steven to the table and ran through each program, taking care to log my data in the program binder so that the next therapist on the schedule would know where I had left off.  I also took detailed notes on Steven's general demeanor, degree of attention, and self-stimulatory behavior.  

Example of Discrete Trial Protocol:

1.  Give clear, concise instruction

2.  Allow 2-3 seconds for child's response (correct, incorrect, non-response). 

3.  Provide feedback as described below:  

a.  If correct, provide praise paired with primary reinforcement (e.g., Skittle)

b.  If incorrect, provide informational "no" and follow with prompted trial

c.  If non-response, follow procedure for incorrect trial.  

The discrete trial protocol originates from behavioral learning theory which proposes that all behaviors are learned, observable, and are the result of interactions that occur in the environment.  From this theory, behavior change is evidence of learning.  Learning theorists often refer to the A-B-C model (Antecedent, Behavior, Consequence) to describe how learning occurs.  Internalizing this framework for how to interpret behavior became the basis for my ability to facilitate learning in both public and private settings.  Parents, educators, even wives (!) can learn to use this method by reviewing the example above.  

The discrete trial technique became the underlying strategy that we would utilize.  It allowed us to infiltrate Steven's autism and reach him beyond layers of camouflage and barriers.  Each time we created the association between Steven's behavior and reinforcement, we were defeating his autism, one battle at a time.  As Steven's skill set increased, something amazing began to happen...he began to engage the enemy himself.  

Discovering Autism

Looking back, I suppose the first day I discovered autism was the day I met Steven,* a two year old bundle of energy with straight, white-blond hair that hung low over his face because it was impossible to cut it.  "He hates having his hair cut," his mother informed me, with a somewhat forced smile pasted across her face.  Steven's eyes were a bright piercing blue, reminiscent of the ocean he lived so close to.  Although the color of his eyes was remarkable, none commented on the hue, rather they worried that Steven never made eye contact, not with anyone, not at all. His eyes seemed to stare into nothing, transfixed by something his parents and relatives could not fathom.  

But it was Steven's eyes, as they stared out from that flyer his parents had posted at my university, that hooked my attention and reeled me in.  Answering the ad seeking behavioral aides landed me in Steven's living room along with four other young women, Steven's parents, his grandparents, and a highly-qualified trainer from the top behavioral agency in the world.  I had no idea that this decision to help Steven would catapult me into a world of hardship, denial, tears, joy, triumph, and eventual acceptance.  This decision would also serve as a catalyst for the rest of my career.  The training I received from the agency became the foundation for the successes I would experience in my own early childhood special education classroom.  

Hence, although I had studied autism, and had aced my undergraduate classes in applied behavioral analysis taught by the notable Dr Ivar Lovaas, in a sense, I first discovered autism when I met Steven.  My story begins with him.  

*All names and identifying information have been changed to protect privacy and preserve confidentiality.  Any similarities to known individuals is purely coincidental.