Profiles: Living full-circle with autism spectrum disorder

Autism spectrum disorder is more ambiguous than most neurological conditions, yet it reaches the public’s awareness primarily via stark, black-and-white numbers. And those affected by the ailment say those numbers fail to paint an accurate picture of what life with ASD really means.

According to a survey released by the U.S. Centers for Disease Control and Prevention in April as part of National Autism Awareness Month, an estimated one in 59 children living in North Carolina is diagnosed with ASD. That’s significantly higher than the national estimate (one in 68 children).

But while North Carolina ranked fourth-highest among the 11 states surveyed for the CDC report, those numbers alone shouldn’t inspire parents to move elsewhere, says Dr. Aleck Myers, clinical director of the Autism Society of North Carolina — in fact, he maintains, the opposite is true.

“It simply means that we do a better job of recognizing and diagnosing it at an earlier age than other states,” Myers says about the latest estimates, based on data compiled from 11 of the state’s 100 counties. “North Carolina is actually a good place to be, as far as ASD research and resources are concerned.”

ASD encompasses a wide range of neurological disabilities and developmental delays characterized by difficulties with both verbal and nonverbal communication. Individuals with the disorder often feel overwhelmed in social situations and engage in rigid, repetitive behaviors. A lifelong disability with no clearly identified cause or cure, it affects every socio-economic and age group worldwide.

Severe ASD can be described as an endless roller-coaster ride in which all the senses are continually jostled. In its milder forms, the disorder may mean that an individual is inflexible, socially awkward and easily distracted by something as minor as the hum of an air conditioner.

People with ASD report that any type of multitasking — such as talking while making eye contact — can be physically uncomfortable or even painful. But because it’s a spectrum disorder, no two individuals display exactly the same set of challenges and behaviors.

Although North Carolina diagnoses more ASD cases at an earlier age than many other states — the median age here is 3 years and 8 months, versus 4 years and 5 months nationally — the steady rise in the number of such diagnoses nationwide over the past three decades is what should really give the public pause, says Myers.

“I think we are close to an epidemic with ASD being diagnosed as it is,” he says, adding, “The statistics suggest that we should be alarmed.”

Beyond stereotypes

Between 2008 and 2010 (the latest year for which CDC estimates are available), the frequency of ASD diagnoses increased by 30 percent. As recently as 2002, the agency estimated that one in 150 children was diagnosed with ASD. By 2006 it was one in 110 children, and one in 88 two years later.

In Asheville, the number of students with ASD has grown consistently enough to trigger significant changes in the support provided for both teachers and students, says Laurie McDanel, director of exceptional children services for the Asheville City Schools. “Years ago, we were educating teachers about general characteristics and basic strategies,” she explains. “Now we use an autism problem-solving team to look at issues with individual students in a more detailed way, and that is so much more helpful to the students as well as the teachers.”

Of the city schools’ roughly 4,000 students, 68 have an ASD diagnosis, according to data for the 2013-14 school year. That includes seven students who were either newly diagnosed or came to the district already having an ASD diagnosis during the current school year. “I find that, on the whole, we all have a much better understanding of and sensitivity for ASD,” says McDanel, who’s taught special education for 25 years.

Myers concurs. “It is rare now that someone doesn’t know what I do,” the pediatric psychologist says about the public’s understanding of his 33-year career studying ASD and other childhood developmental disorders.

But while awareness increases with each passing year, misconceptions are equally plentiful, cautions Myers, and expectations of what autism is aren’t always realistic — particularly since the release of the 1988 movie Rain Man.

“No one knew what I was talking about, and then Rain Man came along,” Myers recalls. “And while it was certainly an impressive portrayal of one person with ASD, it served to stereotype a disorder that cannot be easily stereotyped.”

The blockbuster movie, starring Dustin Hoffman as an institutionalized autistic man with extraordinary mental abilities, forever imprinted the term “autism” on the public’s mind, though it failed to translate the complexities surrounding the disorder, says Myers.

“Not everyone with ASD can tell you how many toothpicks spilled on the floor, just because Dustin Hoffman could,” Myers says about a pivotal scene that reveals the character’s savant nature. In real life, only an estimated 10 percent of individuals with ASD display such traits, but nearly half (46 percent) rank above average intellectually, according to the CDC’s Autism and Developmental Disabilities Monitoring Network.

A lifelong journey

As they grow to adulthood, almost all individuals with ASD require ongoing therapy and intervention in order to gain and maintain a measure of independence, notes Myers. And though the data is limited, Autism Now, a national advocacy organization, estimates that only about one-third of people diagnosed with ASD are able to participate in the workforce at some level.

Increased public acceptance and individualized therapy for individuals of all ages, says Myers, would go a long way toward helping people with ASD participate more fully in society. “We are just now shifting our focus onto what we call lifelong intervention, because the same principles that we know work with children can be applied at any age,” he explains.

For those who live with ASD, public acceptance of a disorder that’s exceptionally hard to categorize is as important as awareness of the annual statistics.

But because few aspects of a life with ASD are neatly predictable, the following three profiles of local residents aim to give readers a clearer idea of the astonishing range the spectrum covers.

The child: Arturo Martinez, 9, Brevard

Arturo Martinez was 4 months old when his mother first began to wonder why, when he tried to clap his hands, they would miss each other.

Sixteen months later, Diana Martinez, a woman as vibrant as she is warm, remembers telling her son’s pediatrician with growing alarm that “Something is not OK.”

The Martinez family, which at the time included Arturo’s father, Kenny Martinez, had just moved from Louisiana to Western North Carolina when Arturo’s behavior hit rock bottom.

“He totally shut down,” she says, recalling the tumultuous changes triggered by the move. “He would just not respond to anything.”

Arturo was diagnosed with ASD six months later. Though he may never be verbal — his vocabulary consists of “momma, daddy, no” and a few other utterances — this 9-year-old boy with glossy brown hair manages to appear as lively as his mother. While his eyes rarely land on anyone or anything for more than a split second, his movements are measured and his focus is intense. He smiles broadly, and his gaze appears curious. Arturo loves school, thrives on routine, communicates via signs and pictures, and enjoys a surprising variety of meals for a child with ASD — all lovingly cooked by his mother, who shops for organic produce and keeps her son’s diet low in gluten.

But Arturo doesn’t interact with peers and has no sense of danger. He tends to wander off — a habit that’s led his mother investigate a GPS device for him, though she hasn’t yet figured out whether he would even tolerate wearing the bracelet.

Like so many children diagnosed at the severe end of the ASD spectrum, Arturo offers few clues to his thought processes, but there’s no doubt in his mother’s mind that he has cognitive awareness, as evidenced by his complete focus on arranging reusable stickers on a scene depicting a farm, while Martinez talks.

“He loves animals and Little People figurines,” she reports. “He re-enacts what he knows with them.”

When Arturo was 3 years old, Martinez enrolled him at Free Rein, a Brevard-based nonprofit specializing in horse-assisted therapy. But Arturo hated the novelty and unpredictability of it and tested everyone’s patience, Martinez recalls.

“He cried and cried every time. I thought many times we should quit, but we were encouraged to stick with it,” she says, shaking her head at the memory. Nearly six years later, Arturo is showing remarkable improvements, many of them learned on horseback, his mother says. “He sits up straight, he listens and responds, he knows he can make the horse go or stop with words. Those are big things for him,” she explains. In fact, Arturo is prominently depicted in the organization’s promotional materials, and photos of his favorite horse, Annie, decorate his room at home.

Martinez, who works as an assistant program director for The Family Place of Transylvania County, a federal- and state-funded organization offering parenting classes, child care and other support services, says it’s difficult for her to prepare for Arturo’s future, though it’s clear that he’ll never live independently and will always require supervision.

“It’s hard to watch other children play and grow up and know that Arturo will never be able to do any of that,” she says, her melodic accent standing in stark contrast with her frankness. “It’s hard to be stared at and talked about. I notice, and it is not right.”

Asked what acceptance means to her, she pauses for a moment, then says: “What I want most of all is for everyone to know Arturo, for children to learn about him and others like him, for them to go home and teach their parents. I think that is how it is supposed to be.”

The teenager: Nicholas Hemachandra, 13, Arden

“He is all love,” is how Ray Hemachandra describes 13-year-old Nicholas, a soft-spoken teenager, as introductions are made. Unlike many individuals with ASD, Nicholas doesn’t seem aloof, and with a few prompts and some pauses, he can politely introduce himself and get past the niceties that are rarely second nature to those with the condition.

“He literally considers everyone he has ever met his friend,” Hemachandra says about his son. A seventh-grader at Valley Springs Middle School in Arden, Nicholas learns in a regular classroom with the help of an aide and receives extra tutoring in a smaller group setting.

Deliberate and almost formal in his manner, Nicholas nonetheless — and contrary to ASD stereotypes — comes across as very caring. He grows concerned when a nearby child is reprimanded for misbehaving, and he holds his father’s hand as they walk on a gravelly path, playfully twirling every 20 steps or so. Quiet but far from a sullen teenager, Nicholas listens intently as his father speaks.

The place he inhabits on the ASD spectrum means that Nicholas often repeats what others say, giving conversations with him the quality of a bad phone connection. He likes things to be just so: Obsessive-compulsive tendencies are often part of an ASD diagnosis, and Nicholas has certain fascinations that border on obsessions and a few phobias that defy all rational argument. He likes to agree with any leading question, though his father — a single parent, writer and blogger who is Nicholas’ full-time advocate — tries his best not to pose questions that hint at easy answers.

Nicholas may seem to process information slowly, but when he’s handed three balls, he’s a blur. He can juggle with the best of them (there’s a YouTube video of him stealing the show at a school function). That kind of precision means his hand-eye coordination is integrating effortlessly with his fine and gross motor skills — a skill set the ASD brain is often said to lack due to weak connections between the two hemispheres.

And while his unfailingly friendly and timid demeanor may make him seem feeble-minded, Nicholas is far from it. “He has determination,” Hemachandra says admiringly. “I got him started with juggling, but he took it from there and now juggles infinitely better than I do.”

That’s not all. After years of circling any body of water in a state of high anxiety, Nicholas one day simply took a deep breath and waded into a pool during a birthday party “with all his clothes on,” his father recounts with a ready laugh. “He has since taught himself to swim by watching others.”

Nicholas can also suppress a tendency to flap his hands excessively, knowing that others might make fun of him. Those are just a few of the achievements indicating that Nicholas can learn from others, overcome fears through his own reasoning and think in terms of causal relationships.

“Now he’s teaching himself to solve the Rubik’s Cube,” Hemachandra says with unabashed pride as Nicholas looks up, clearly pleased about pleasing his father.

Father and son operate in easy harmony. The handholding is voluntary, no longer protective (as a child, Nicholas was given to self-injurious behavior and sometimes would suddenly just dash off).

Hemachandra sympathizes with parents of newly diagnosed children, who often cast about wildly for quick fixes or wallow in fears and frustrations. But that time, he says, would be better spent researching effective therapies and learning what’s worked for others.

“What they don’t know is that their perspective will change,” Hemachandra explains, adding that he found respite and inspiration in support groups and believes that time spent learning viable strategies is more valuable than staying paralyzed by dashed hopes. His message to frustrated parents? “Your child is exactly the same child as he or she was before the diagnosis. They want to be accepted and cherished exactly the way they are.”

Hemachandra says he’s not more worried about Nicholas’ teenage years than he is about his son’s overall future. With the right balance of therapies and coping tools, Nicholas will be able to navigate the next decade of his life about as well as any other teenager, Hemachandra maintains. And while the question of how to secure Nicholas’ existence after his father’s death is still a work in progress, Hemachandra says his overarching goal is to work toward a future that’s focused on the boy’s own hopes.

“Nicholas wants to drive, so we’ll be working on that,” Hemachandra says with a decisive can-do shrug.

Hearing his father’s words, Nicholas flashes a big smile. Then it’s time for another twirl.

The adult: Priscilla Brackett, 35, Mills River

Priscilla Brackett, whose too-long pixie haircut fits her quirky personality, is of two minds every minute of the day. “I’m on two operating systems all the time,” she says matter-of-factly: “my autistic one and my NT one.” She seems relaxed as she orders a cup of coffee in a small restaurant near her home outside Hendersonville. “NT” is Brackett’s shorthand for “neurotypical,” a controversial label that some in the ASD community use to describe anyone who hasn’t been diagnosed with the condition. Some adults with ASD feel the term places an unfair focus on autism’s being atypical.

Brackett, whose diagnosis places her at the high-functioning end of the autism spectrum, says her “NT” aspect acts as her filter, because her autistic half is too blunt and doesn’t know how to charm or manipulate.

“I had to learn to fit in,” she says with another deadpan expression. “I got picked on a lot as a child and taken advantage of as an adult. I was often clueless about unspoken motives, because I don’t have them.”

Brackett, who’s self-employed and provides administrative support to small-business owners, several of whom are also on the autism spectrum, can’t remember a time when she didn’t feel different from everyone around her. Growing up in Florida and Western North Carolina, she assumed that it was not her but her family that was odd. In school, Brackett couldn’t understand why teachers thought she was disobedient and defensive, even if she got good grades. Likewise, in the workplace — she’s done everything from managing a fast-food restaurant to night auditing for a hotel chain — she excelled at customer service but failed at water-cooler chitchat and teamwork.

“At 5 I taught myself to play the piano, because I preferred it to playing with other children. I read encyclopedias and cookbooks to relax. I got really good at reading customers’ body language so I would know what they needed, but I could never apply myself very well to office politics,” she says, her eyes methodically scanning foot traffic in and out of the café.

And despite having learned how to filter her ASD, being in public still makes Brackett anxious. “All social situations are stressful for me,” she says. “I prefer to be home alone.” To function in daily life, Brackett has acquired an impressive bag of tricks that help her appear more normal than she feels.

“You think I am looking at you,” she says, referring to her steady eye contact, which seems to contradict her ASD diagnosis. “What I’m really doing is looking at the contours of your glasses,” she explains, tapping on her own frames to demonstrate. Suddenly Brackett’s eye contact doesn’t seem so effortless.

Likewise, her right boot is scuffed up, because she likes to press her left foot on top of it to keep herself calm. Inside her boots, her toes wiggle almost constantly, she reveals. And instead of “stimming” — repetitive calming behaviors that often give away individuals with ASD — Brackett presses her thumbs inside her fists as they rest on the table, because “no one notices that.”

She talks about “faking being flexible” by overcompensating in other areas of her life. When her routines and schedules end up in a heap, she may resort to smoothies for sustenance, because the uniform consistency comforts her.

Conflict, she says, shuts her down. “I lose all ability to communicate.” But Brackett has learned that when emotions flare up, she expresses herself better through email, and she seems completely comfortable revealing that she and her fiancé often communicate via the Internet, even when they’re in the same house.

As an adult with ASD — she was diagnosed at age 32 — Brackett sees herself as a resource for other individuals and their caregivers. That’s particularly true because she’s also a caregiver to her 7-year-old daughter, Evie, who was recently diagnosed with ASD.

Like her mother, Evie is smart and doesn’t struggle with academic challenges, but as a very concrete thinker she gets in trouble, because she “sees through magic and myths: She doesn’t believe in Santa Claus.”

As a parent, says Brackett, learning to identify triggers — situations that set off irrational behaviors — and ways to cope with them has been the most valuable strategy. “I don’t want Evie to be trying to be something she’s not,” Brackett says about her hopes for her daughter’s future. “I want her to know that she thinks differently and that that’s OK.”

For herself, Brackett, who’s getting married later this summer, says she’s finding much comfort in a local support group where she feels less anxious than in any other social situation.

“It’s almost the only place where I don’t worry about being misunderstood,” says Brackett. “The worst of being on the spectrum is that it is a hidden disorder. People don’t know how to take us, how to accept us,” she says, taking a last sip of her coffee. “We’re not mentally ill, but society doesn’t know what to do with us, so we’re often treated as such. I want acceptance for all neurodiversity. It’s OK for all of us to think in different ways.”

Freelance writer Geraldine Dinkins lives in Brevard.