In the dimming afternoon I cross the driveway, beneath the maples and the pines. As I stand on the stony porch holding my keys, I can hear screaming from the other side of the door.
He greets me with a stare, agape, whispering sighs nearly inaudible. For an instant, as he extends his hand to share a pretzel, his eyes lock on mine, and his gaze appears to travel right through me, past my presence, past the door that is swinging shut behind me, but not beyond the confines of his own world.
From the collar of his red polo shirt hangs a backwards silver-striped necktie, and in his right hand rests a brown coffee filter, his “paper bowl” with three pretzel sticks (not two, not four: he must start with three). Moving slowly and deliberately toward the kitchen, he mumbles disjointed syllables to himself.
Then he is screaming again: “Tuesday Octobuhr seh-ven, NO, nuhno-, NO PAPER BOWL!” He freezes on the threshold to the kitchen and stomps his foot, his arms at his side, his head tilted up – his stationary protest. Seemingly a small variation from his daily ritual, we have no more of the cups in which he serves food, and the coffee filters make poor substitutes.
So demanding and yet so generous, he holds steadfast to his daily routine. Next he reaches for a bag of M&M’s and pours them into a new coffee filter. First the reds, then the blues, then the greens, Ben eats his M&M’s systematically, and for each one he eats himself, he offers one to me.
Patting his shoulder, I sit back and see that he is smiling, laughing, chuckling to himself at a joke I have missed. I love to see him smile. As much as I resent him on certain occasions, I absolutely love my brother. I wonder where I would be without him, whether or not I would ever have learned to care for another individual, if I would be so selfish and inconsiderate as I was in my youth.
I can recall one particularly bad incident. I am on my feet, in the kitchen at his side. “Ben? Ben buddy, you ok?” He wobbles in front of the sink, staring blankly out the window, his lip trembling slightly, one arm frozen out to his side, the other locked in a stone grip on the white ceramic edge of the kitchen sink. He abruptly loses all strength and teeters backwards. As I support his entire weight, he violently convulses with brute strength beyond his control.
I call for help; my mother runs in. The next thing I can remember, he is lying back on a large bean bag chair, breathing in shallow, strained breaths, a turquoise ghost hidden behind the unnatural pallor of his complexion, as my mom strokes his brown curls.
Autism and epilepsy as his shackles, my brother is a prisoner of his own world. As I sit across the room, watching the unrelenting fatigue in his squinting eyes, I decide that I will not be going out to the movies with my friends tonight; I realize that he never will. As far as one may predict, he will never experience the freedoms that I daily squander without second thought: to drive, to readily relate to people, to live an independent life.
My brother’s influence on my life is impossible to quantify. He has forced me to rise to the occasion, to be the best I can be. He has taught me to care for another individual with patience, to mix compassion with my frustration, to find solace in small acts of kindness, to teach, to learn.
Fortunately his epilepsy has become far less severe with medication, so such episodes as that described above are infrequent, but his OCD now extends his daily routine late into every night. Ben can easily spend an hour loading the dishwasher, obsessing over the position of every cup and bowl; every spoon he moves in a deliberate circle before placing it precisely, such that all the silverware stands freely against the wall of the plastic tray.
In the daily struggle to push him through the routine on a timely basis, I often supervise his progress, and remind him to move on to the next activity in sequence. Without a reminder of the next thing he must do, Ben can spend twenty minutes preparing to eat a single Tic-Tac.
Despite all the difficulty he has borne into my life, he has more than compensated in all that he has done for me. Just as I push him, he pushes back on me, demands that I strive to be my best. He serves me as a teacher, a valuable guide to my own development. If not for him, I could not comprehend what it means to care for another person, to dedicate personal sacrifice to the hope that I might improve his lot. If not for him, I could not truly appreciate all that I have, the freedom to travel beyond the confines of my own daily ritual. Indeed, if not for him, I would not be half the person I am today.
Ben: Perspective on Autism, Part 2
I look to Ben’s future with concern, as I am sure my parents share. What is going to happen when he is an adult, when he subsequently no longer attends school under DAP? How much of the responsibility for his future will fall on me, how much on my parents, how much on him?
Certainly my family desires some continuity – we cannot simply cease to be part of Ben’s life. The prospect of sending him off to “some institution somewhere” seems awfully grim. There are, however, a few options that we have considered.
Life in a group home, living with a group of autistic adults under constant care, is fairly appealing to our needs, but this might deprive him of some sense of personal connection, as the caretakers would be caring for many autistic adults. Hiring a private caretaker is another possibility, but that would be far more expensive and somewhat haphazard, as this solution is highly dependent on a single person. In any case, Ben will require some form of care, 24/7.
Next is the question of occupational therapy – with what activity will he fill his days? He has been recently learning skills in school that could prepare him for a job in the food service industry (and he has shown his interest by serving food in cups or “paper bowls.”) I recently threw a birthday party, and he walked around sharing different foods from his daily routine with my guests. I smiled when I saw that he was making a clear effort to connect with my friends, sharing M&Ms and walnuts and pecans with all the pretty girls around my house, a grin on his shy face. My friends understood, accepting his gift, returning his smile.
Beyond the case of my brother, the rate of autism in the US has reached a staggering rate of 1 in every 150 children.[2] There is some controversy as to whether or not the rate of autism among the population of US children is rising. In any case, the population is growing exponentially, as is the number of children diagnosed as having autism.
In a few years, those autistic children will be autistic adults, and their families will face the same questions that I face with my family now. How will this growing community of autistic adults affect society in the near future? How can we contribute to the thousands of parents now desperate for the same answers?
Surprisingly, the increased rate of autistic adults may benefit the economy.
First, autistic individuals may become ideal workers, because they are driven by repeated ritual. By nature, most autistic children develop intense fascinations at a young age, which develop into a repeated routine. My brother, for instance, must make a trip to Acme and a trip to the YMCA on every Saturday. Many autistic children must watch a certain movie every day – I have witnessed other autistic children fascinated by such movies as Thomas the Tank Engine and Harry Potter. My brother insisted on watching Pixar’s A Bug’s Life about four times daily over one summer. Within that June, I had unwillingly memorized the entire film verbatim.
With their fascinations as incentive to continue, autistic workers have tremendous potential to happily complete tasks that others might think menial. One DAP graduate, fascinated by vacuum cleaners chose a job by a Hilton hotel in Christiana, Delaware. There he works now, easily the most satisfied employee, vacuuming the hotel from top to bottom daily. As a custodian, he is extremely efficient, and extremely content.
Most autistic adults require a caretaker: this offers to create jobs. Such jobs require a great deal of dedication. Since the role of a caretaker entails outstanding ability to relate to the autistic person and provide for his/her needs, extensive patience is necessary. To care for another individual 24/7 is no simple feat.
Fortunately, the future looks bright for the growing autistic community. The current attitude of awareness and acceptance toward autism has been truly inspirational. Nowadays, very few people can honestly say that they have never seen autism in any form, because it has become ubiquitous, and people have learned to accept it.
On those occasions that I join my dad and my brother on the requisite Saturday Acme trip, I see that many people working and shopping there know Ben, and they greet us with a smile. Ben draws a similarly warm reception from all the regulars at the YMCA, in the fitness center and the pool. This acceptance seems relatively new – I recall that only ten years ago people regarded my brother and my family with disgust when we appeared in public. Undoubtedly, public outlook has shifted, now much more positive.
One story stands out in my mind, a testimonial to the wonderful acceptance of disabilities, the story of a man with Down Syndrome from West Virginia.
He grew up well-known and well-liked by everyone in his small town. In his senior year, his high school voted him homecoming king, and with his family’s help, he received a grant from the state to have a modest home built for him. With 24/7 care financed by the state, he is able to live a fairly normal life, going out to work every day. Every few nights he goes out on the town, where he proceeds to walk all around the room, greeting everyone he sees, speaking with his friends. Not only is he able to blend in well in a social setting, but he thoroughly enjoys it.
All the while, his caretaker quietly observes from the sidelines, ensuring that all is well. Unless there is an incident, the caretaker need not interfere in the life of an autistic man who has managed to become mostly self-sufficient. Therein is the life that I hope Ben may some day achieve.
I hope that all autistic individuals may rise above the emotional disconnect, the impaired communication, and the narcissistic tendencies that characterize autism. With the right attitude of acceptance and confidence, society may let the autistic community find a place in a world outside their own, the small world to which they so often limit themselves. Society may let the autistic community rise above all that might hold them back. Let them thrive, live as they will live. Let not this anomaly become a disability.
