Life on the Spectrum
The Early Years
Bryan was an easy baby, cuddling with family, sleeping, eating, and growing normally like other babies and infants. But during his preschool years he began to show little interest in others and played along side -- rather than with -- children his own age. Bryan was very bright, but by age 5 his social skills seemed to lag behind those of his peers. While other preschoolers played house, school, or superheroes together, Bryan was engrossed in solo activities devoted to manipulating things: stacking books, playing endlessly with musical pop-up toys, or burying action figures under mounds of dirt. When he did try to join in group play it usually deteriorated into squabbles because Bryan didn't understand the social give-and-take the context required. "He'll grow out of it," we were told by family, friends, childcare staff and even Bryan's pediatrician.
A career change prompted us to move across the county about the same time. A year later, my husband and I separated and eventually divorced. This was a very stressful time for our family, but especially for Bryan, who didn't deal well with change of any kind. It was at this time that Bryan's behavior went from peculiar but harmless to bizarre and disruptive.
Getting ready for school became an emotional and physical battle. Bryan would stay in bed wrapped like a mummy until I physically removed him from his bedding. He refused to wear any clothes with buttons, tags, elastic, belts, pockets, or certain colors and textures.
The smell, taste, and texture of certain foods sent Bryan fleeing from the breakfast table in disgust. Toothpaste made him gag regardless of the flavor, and the toothbrush "just didn't look and feel right," so he refused to brush.
Leaving home on time became almost impossible. Bryan would repeatedly line up his toys or crayons in some special order before we could go. Sometimes I literally had to drag him to the car to leave.
School, childcare and church settings were even more difficult for him. He had trouble adjusting to changes in simple routines or shifting from one activity to another. His vision and hearing screening test results were normal, yet he often misunderstood or didn't hear directives from adults. Impulsively, and despite repeated warnings, he'd run out in traffic, climb rickety fences, or gather bees in his hands without a thought to the consequences of his actions. Bryan suffered many close calls, cuts, scrapes, bumps, bruises, and bee stings as a result of his impulsiveness. Exasperated and in pain, he tearfully explained his umpteenth bee sting: He thought the bees at school, child care, church, and home settings were all very different.
Bryan hated large, loud gatherings of people. Scowling, he would avoid touching people and cover his nose and ears like Count Dracula while making a quick exit. Bryan got in trouble for being disruptive during school assemblies or leaving without permission from the cafeteria at lunchtime.
He usually played alone during recess, chasing bugs or wandering off on some imaginary scientific exploration. Bryan simply didn't understand the social and cultural norms that other children seem to learn intuitively. He was frustrated by his failed attempts to make friends and play with other children.
Bryan sometimes acted out by crying, shouting, wedging himself under a table and refusing to come out, fleeing, or hitting himself or other children. I often had to leave work or wherever I was and come get him. Without condoning the inappropriate behavior I tried to defuse the situation, find out what factors led to his latest meltdown, and negotiate an acceptable plan of action between those in charge and Bryan. Nothing worked, however. Reasoning, incentives and disincentives, reprimands, lost privileges, community service, special accommodations, suspensions, and other actions went nowhere. It was time to get professional help.
Some Help and Family Concerns
Bryan received bi-weekly counseling from a psychologist, and special school assessments and accommodations. He also began weekly therapy sessions with a psychiatrist. Although expensive, we included the entire family in extended sessions twice each month. Bryan's neurotypical older sister and younger brother talked openly about their experiences and concerns. During these sessions, I learned how very frustrated they were over Bryan's rigid and self-centered ways. They resented how much our family life revolved around managing -- or trying to manage -- Bryan's behavior. They felt especially embarrassed and angry about Bryan's behavior at school and in public places.
Still, they were quick to defend Bryan when other children teased him because he was "weird." To them, their brother wasn't weird, just different. My son asked, "What do I tell my friends when they ask me, 'What's wrong with your brother?'" My daughter lamented about having to "look out for" Bryan, noting with both frustration and worry that she couldn't protect him at all times. Both children wondered whether they will "get" whatever ails Bryan. But it was clear they loved their brother very much. "Will he ever get better, Mom?" they asked.
Well-Meaning But Misguided Help
We all learned new coping skills and strategies during therapy. Bryan received a preliminary diagnosis of Tourrette's Syndrome and medicine for anxiety. While I was relieved to finally have a name and diagnosis for his condition, I felt that it didn't fully explain the range of his behaviors, mannerisms and deficits. Things had improved after a year and a half of therapy and counseling, but not enough.
Bryan's social and behavioral problems continued. My geographically and emotionally distant ex-husband doubted the seriousness of our son's behavioral problems. A close family friend with no clinical training suggested that Bryan had oppositional defiant behavior disorder. If I would simply be a stronger parent, she reasoned, he might learn to behave himself. The new school administrator stated that Bryan was purposefully flouting authority and school rules, and threatened to expel him permanently. The after-school childcare director offered her opinion as well. "There's something wrong with your child," she said. "He'll have to go somewhere else." My boss suggested I consider institutionalizing Bryan if I ever hoped to get my life and career back on track.
Moment of Truth
One day I watched from afar as Bryan struggled for 20 minutes to open a door with his elbows, refusing to touch the door handle for reasons only he knew. I resisted the urge to open the door for him. I wondered how many doors would be closed to him because of his invisible disability. He finally opened the door by rolling his shoulder over the handle. I wondered how much Bryan would have to contort himself to fit in a world that made little sense to him. I wondered to what extent other people would misunderstand and mislabel his disability. I wondered if he was going to make it at all.
I knew Bryan as a spirited, loving, sweet, smart, funny, creative, and happy little boy. I also knew that no one was more frustrated by Bryan's disability than Bryan, and even he was losing hope. This disability was torturing my son, robbing him of his self-esteem, childhood, relationships and future. I knew then I had to take action to save my son and our family.
Knowledge is Power
I began to watch closely for patterns in Bryan's behavior in different environments given different stimuli. I searched for information from trusted Internet sites, journals, books and organizations. I enlisted Bryan's help to identify triggers that set him off, and find possible alternatives and solutions to avoid these triggers. My other two children provided valuable insights as well.
Bryan showed symptoms of not just one but several possible developmental disorders. At the top of our list was Asberger's Syndrome. I discussed this with Bryan's psychiatrist but she discounted the possibility since he was "too verbal to fit the Asberger's profile." Still feeling that there was something to this, I brought her articles that supported a possible Asberger's diagnosis for my son's symptoms. Her professional opinion remained unchanged. "No, not likely," she said.
I knew I was the expert on my son and decided to get a second opinion. We visited a psychiatrist who was board-certified in child and adolescent psychiatry. After a comprehensive history, evaluation sessions, blood and urine tests, and an EEG to rule out seizures or other conditions, he provided his diagnosis: Asberger's Syndrome and Obsessive Compulsive Disorder (OCD).
Real Progress and Hope
At nine years old, we wondered if Bryan would respond well to his treatment. We adjusted his medicine and therapy consistent with this new diagnosis and saw steady improvements. The Asberger's/OCD diagnosis opened doors to additional educational, medical, and mental health services that were previously unavailable. Eventually, Bryan was transferred to a non-public school that had the specialized services he needed. Today Bryan is in 6th grade and is at or above his grade level in most subjects. Bryan loves science, video games, and Pokemon™. Like many of his school buddies with ASDs, he's become a talking Pokemon™ encyclopedia, memorizing countless details about hundreds of Pokemon characters.
We continue to work on his social and behavioral skills, which have improved dramatically. There are no more emotional meltdowns, no more unplanned trips to extract my son from school, child care, or church.
With his Asberger's and OCD under control, other aspects of Bryan's personality are emerging, such as his quirky humor and drawing abilities. One day he proudly showed me his artwork. It was an outline of a pair of trousers with shoes. When asked, he told me that it was a picture of Dr. Martin Luther King's pants -- just the pants because his head and shirt wouldn't fit on the same page. Then he showed me the portrait of Dr. King he colored to go with the pants. His portrait was accurate and richly colored with beautifully detailed shading. The shirt was missing because he ran out of the "right" paper.
Good Friends and Bright Futures
"Great, we're gonna make it, Bryan!" I announced steering our minivan around the corner towards his special education school. Bryan missed the bus fussing over his socks and breakfast bars, and time and patience were running short. He spied his classmates gathering on the playground and shouted, "Step on it, Mom, my team needs me!"
Stunned, I pulled into the school parking lot, laughing and choking back the tears. He quickly gave me a kiss good-bye and dashed off to play with his friends. In a daze, I realized just how far we've come in the three years since Bryan's diagnosis.
I sat watching Bryan laughing and playing ball with his friends on the field. "Great, you're going to make it, Bryan!" I said softly between tears, "The world needs you!"