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January 31, 2014

Interpreting the Subtle Language of Severe Autism

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Dr. Slavsky stares at me, gripping her pen as if she’s stepped onto another planet. I tell the therapist not to worry. I’ll help you. Like a guide on a trip never taken, I’ll take you inside the non-verbal world of severe autism, seizures and self-injurious behavior.


My son James is a handsome, green-eyed, 24-year old, non-verbal male with wavy brown hair. A Catholic nurse working with James chimes in. “He looks like the statue of David.” Despite his severe autism and epilepsy, he’s ambulatory (he walks). In fact, he walks up to 5-miles daily. "This is most interesting," says the therapist. 

Day nurses don’t worry about getting daily exercise. According to a day shift nurse, “Since I’ve started working with James, I’ve lost 10 lbs.” Perhaps James could inspire some folks on America’s Biggest Loser to work with severely-autistic patients. Such stamina. If he wasn’t severely-autistic, he may have been a navy seal. Or a personal trainer.

James speaks in a unique language. To understand him, I’ve had to learn his language. Indeed, I’m his primary interpreter. An elbow to the ribs can mean he’s hungry. A change in pitch or duration of vocalizations can mean frustration. A glance, depending how quick the gaze, can either mean acute fear, sensory overload. Or it you looked closer it could mean hunger and thirst—presenting within a sustained search and scan behavior (scanning environment to see if food or drink is around).  

Unlike some autistics, James does not use self-injurious behavior (SIB) as a “ritual” or to “release opiates.” James uses SIB primarily to communicate pain, fear, frustration, hunger, thirst, boredom, discomfort and dislike. Occasionally, he’ll exhibit SIB to escape a task. “I don’t want to do this right now,” he’s trying to say. Or, “I don’t like the taste, temperature or texture of this food right now.”

Additionally, he exhibits SIB to express agitation. For example, agitation during entrance and exist into transport car to and from autism day program.  “James should be arriving home from day program soon,” I tell therapist. Behavior rooted in resisting transitions isn’t exclusive to autism, I add. Consider a sleepy toddler, after a long ride, pulled from a car seat and carried into a noisy Target to go shopping. They aren’t really happy about it.

Transition: James is about to get out of the car. Watch. Watch carefully, I say. Did you see that quick self-abusive punch to chest upon exiting vehicle? Watch the nurse. To prevent more SIB, the nurse prompts James to chew on his sensory tubing, which is attached to a clip on his shirt, to prevent James from dropping it. It works.

Let’s follow the nurse. Nurse walks James to porch.  I see James’ eyes scan the area. He sees the drink and snack I’ve already laid out for nurse to give him (we call that a pro-active strategy). James glances at snack and drink again and elbows himself in the ribs. A rather primitive way of saying, yes, I want that, but that’s his language. It’s all he knows, for now. We hope to change that.  When nurse offers James a drink, James lunges forward and quickly drains half the sport’s bottle. 

Must have been thirsty. He’s on multiple medications, after all. Surely, anyone with a rudimentary knowledge of how human liver and kidneys responds to medication knows ample hydration is critical, especially in a non-verbal patient.

James is off again. The therapist is taking notes on pink, legal ruled paper. After walking 10-laps around the pool, James bolts back to the front door. Begins hitting his legs. Check his diaper, I remind the nurse. The diaper’s wetness indicator is blue, meaning he’s wet. As I suppose any adult in such a vulnerable position would agree, James doesn’t like being left in a squishy, cold diaper. He’s telling us he’s wet by hitting his legs, in the same way a baby communicates sitting in soaked urine by sudden inconsolable wailing.

We have to think fast. It’s still 25-minutes before his scheduled bath time. Do we change him now, or wait. If we wait, we’ll have to re-direct him with more walking, a chew tube, food or drink. Maybe all four? If we don’t wait, he’ll have his bath 25 minutes off schedule. James solves the dilemma for us when he chooses to continue walking. Exactly 24 minutes later, as if he has an internal clock, he’s bolts back to the front door and grabs the knob. “Okay, James,” says the nurse. “Let’s get you into the bath.” The therapist flips a pink page, continues to write. 

We follow nurse and James into the bathroom. Nurse visually prompts James to lift his arms all in an effort to engage him and quickly undress him before SIB emerges. I run the bath water. God forbid water too cold or too hot, that’s a sure trigger to SIB. Meanwhile, James is laughing hysterically, bent forward, trying to step into tub, one pant leg still around an ankle. “Hold on,” we say in unison. For approximately 25 minutes, James stays in bath, palms open under a trickling faucet. He then stands, ready to exist.  

With a gentle physical prompt, “Wait a second James,” says the nurse. Sometimes it’s easier to dry him off while he’s still standing in tub. After he’s done drying James, the nurse extends his arms to James. A visual cue. “Step over the tub, James,” he says. I’m standing by, in case things go sideways. The worst that happens is James begins to turn in circles. Naked. Chirping. Nurse grabs diaper. I grab sport’s bottle now re-filled with an Emergency C packet and filtered water.

It’s that time of year, you know. Flu and cold season. Go natural. 

You don’t have to be a professor of microbiology and pathology to prevent or treat a cold. Even our great-great grandparents understood natural: Exercise, hydration, personal hygiene, adequate sleep, Vitamin C, zinc, garlic, Elderberry syrup. Not foolproof, but feasible and wholesome.

After bathing, James’ routine is to relax in bed and watch a “preferred” movie. How we discovered which movies he “prefers” came as a surprise. It began during an early evening, when we chose a newly released clay animated kid’s film. Two minutes into the movie, James’ eyes grew wide, he threw himself onto the pillow, turned his head away from the clay figures and began sucking his thumb.

Because James’ has a seizure disorder, we had to FIRST rule out seizure activity to explain this sudden change in behavior. We checked his eyes. Pupils normal. We watched his body. No myoclonic jerking. Non-verbal autistic people with epilepsy are unique to the medical world, I explain. An autistic person with seizures can't tell you if the TYPE of seizure they're having is suddenly altering smells, sights or sounds. And as such, causing fear or distress. How many autistic meltdowns have been rooted in sub-clinical seizure activity, I wondered aloud. 

Ruling out seizure activity, we decided to experiment to see what real time variable was responsible for James suddenly refusing to watch this newly introduced movie. We chose another movie: Hercules, an animated musical Disney film. Seconds into the movie, James popped up, looked at the screen, laughed loudly, and then bounced so high on his bed we had to stand closer to prevent him from flying off. He watched the entire movie, laying on his back, while chewing on his sensory tubing. 

A week later, we experiment again. Sure enough, James punches his chest when we play the clay animation film. He laughs and remains calm during Pocahontas. The therapist is excited by this breakthrough discovery, as are we. Who knew? Conclusion: No more clay animated films. 


1 comment:

Rachy D said...

Thank you for your blog. I work with severely austic children in the UK. I wonder if I have been 'missing' signs of communication because they seem so small / insignificant. .. for example a fleeting glance to scan for food. Really helpful, thanks for your insight into yours and James's world.

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