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The Story of CJ: Christopher Jackson and Veronica Vazquez-Jackson aren't content to be just great parents to their autistic son—they're also using their celebrity to show other parents the way.

Firpo-Cappiello, Robert

doi: 10.1097/01.NNN.0000522200.14001.24
Features: Christopher Jackson and Veronica Vazquez-Jackson

Christopher Jackson and Veronica Vazquez-Jackson aren't content to be just great parents to their autistic son—they're also using their celebrity to show other parents the way.

Photograph by Stefan Radtke

WEB EXTRA: For more information about the role of genetics in autism spectrum disorder, go to http://bit.ly/NN-Autism-Genetics.

RIGHT: COURTESY JACKSON FAMILY

RIGHT: COURTESY JACKSON FAMILY

Christopher Jackson is a bona fide Broadway star, best known for his Tony-nominated portrayal of George Washington in the groundbreaking hip-hop musical Hamilton, as well as featured roles in In the Heights, The Lion King, and other musicals. He's also a regular character on TV's Bull. But ask the 41-year-old actor and singer about his family and you discover another side of Christopher: the involved husband to Veronica Vazquez-Jackson, 43, and father to son, CJ, 12, and daughter, Jadelyn, 8. In fact, he considers his role as family man the most challenging and rewarding one yet, especially since his son was diagnosed with autism.

“As a baby, CJ was very connected to us, his immediate family,” recalls Veronica. “But when strangers approached, he'd cover his face.” At 10 months, after being hospitalized with pneumonia, his vocabulary and social interactions diminished, she says. He also stopped responding when his name was called or making eye contact.

Over time, Christopher and Veronica noticed other changes as well. For instance, he began staying away from other children, retreating to corners, lining up toys, and sorting blocks. “He started playing with toys inappropriately,” recalls Veronica. “He would hold little cars upside down to watch the wheels spin, and look at objects out of the corner of his eye.”

An initial evaluation by a pediatrician suggested CJ was fine; he was just developing at a slower pace than some toddlers his age. But the Jacksons had their doubts and pressed for a more in-depth evaluation by a team of specialists, including a developmental pediatrician, a child psychologist, and a speech and language pathologist.

A series of observations and evaluations led to a devastating diagnosis: severe autism. As part of the diagnosis, the Jacksons were told their son might never speak.

“I'd never heard the word ‘autism’ before,” Christopher recalls. “As a dad, I was completely lost.”

SOUL SIBLINGS

SOUL SIBLINGS

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A CLEARER PICTURE

Feeling lost is common among parents whose children are diagnosed with autism, but ongoing research and successful interventions have led to a better understanding of the disorder—and better outcomes for children and families.

Autism spectrum disorder (ASD), as it is now commonly known, is a neurodevelopmental condition characterized by a well-defined set of symptoms and social and emotional challenges. The US Centers for Disease Control and Prevention (CDC) estimates that approximately one in 68 children have been diagnosed with ASD. That number has increased in recent years, but whether that represents an actual rise in the incidence of ASD or simply a growing awareness of the spectrum among health professionals, parents, and educators is unclear. Although the prevalence of ASD among different races and ethnicities is the same, African-American and Latino children are more commonly misdiagnosed in early childhood, which can delay early interventions, says Shafali Spurling Jeste, MD, associate professor in psychiatry, neurology, and pediatrics at UCLA.

The causes of ASD are not yet understood, but the National Institute of Neurological Disorders and Stroke (NINDS) notes that genetics and environment appear to play a role. Imaging studies suggest that the brains of people with ASD have some significant differences that may result from disruptions in brain growth caused by genetic defects. The anatomical and biochemical underpinnings of autism are also not yet understood, but ongoing imaging studies of brain development in children with ASD are expected to shed light on these factors, says Dr. Jeste.

“Twenty percent of children with ASD have genetic factors that have been identified for autism susceptibility,” says Andrew W. Zimmerman, MD, FAAN, a pediatric neurologist at the University of Massachusetts Memorial Medical Center in Worcester. “To look for those factors, we evaulate each child by taking DNA from a cheek swab or blood sample.” No one genetic mutation accounts for more than 1 to 2 percent of ASD.

No cure exists for ASD, and some therapists and advocates, including parents and physicians, prefer to focus on identifying successful early interventions and therapies, rather than cures, to prepare children for life as adolescents and adults. Similarly, no drug can treat ASD, but serotonin reuptake inhibitors, stimulants such as amphetamine/dextroamphetamine (Adderall), and other commonly prescribed medications can help manage symptoms such as hyperactivity, repetitive behaviors, anxiety, depression, and aggression.

The US Food and Drug Administration (FDA) has approved only risperidone (Risperdal) and aripiprazole (Abilify) for the treatment of some symptoms such as irritability, says Yolanda Holler-Managan, MD, FAAN, a child neurologist at the Ann & Robert H. Lurie Children's Hospital in Chicago.

LEADING MAN

LEADING MAN

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GETTING A DIAGNOSIS

If a child is showing telltale symptoms such as avoiding eye contact and not responding to his or her name, a pediatric check-up is the first step, says Dr. Zimmerman. “With increased awareness of the early signs and recent American Academy of Pediatrics recommendations that all 18- and 24-month-olds be screened for ASD, children are being assessed earlier.”

If pediatricians suspect ASD, they will refer the parents to a team of specialists who will assess the child's cognitive ability, language skills, and how well he can dress, feed himself, and take care of hygiene.

“Most evaluations are done at a medical facility designed to look like a home or preschool where doctors and health professionals evaluate speech, communication, play, and social behaviors, and interview the parents,” says Dr. Zimmerman. They will look for problems communicating and interacting and for repetitive and restrictive behaviors. They will also look to see if children become agitated or aggressive if overstimulated or with changes in routine. Children may also have difficulty interacting because of an apparent inability to understand or mirror other people's feelings and reactions. In some cases, children will be especially sensitive to sensory stimulation such as bright lights, loud noises, and textures of clothing.

At the same time, parents and teachers may notice strengths in children with ASD, including exceptional memory, above-average intelligence—according to the CDC, about 46 percent of children with ASD have average or above-average intelligence—and a gift for music, math, or visual art.

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INTERVENING EARLY

The Jacksons took CJ to a developmental pediatrician, who has remained his primary physician for a decade. Early diagnosis and intervention can be crucial to a positive and empowering experience, not only for the child but for the parents as well.

“Early intervention is the only established treatment, and the earlier you start the better. The child's brain is most ‘plastic’ in the first five or six years, and the chances of improvement are greatest during that time,” says Dr. Zimmerman.

“By the time CJ was 2 years old, he had speech therapy, occupational therapy, and physical therapy three times a week,” recalls Veronica. “He also went to a center-based socialization program for two hours each day.” At first, therapy focused on getting CJ to follow simple verbal instructions, such as, “sit at a table,” which he couldn't do. By the time he was of elementary-school age, CJ was ready to attend a state-approved private school that specializes in ASD. “That has made a huge difference in his development,” says Christopher.

“Speech therapy boosts language and social interactions later in childhood,” says Dr. Jeste. “Physical and occupational therapy improve stability, coordination, and sustained focus and promote increasing independence as the child grows up.”

Experts caution parents against following fads or spending extra time, effort, and money on unproven interventions such as nutritional supplements, gluten-free diets, avoiding vaccines, and using chelation to remove heavy metals. Evidence doesn't support these interventions, and concerns about health and safety are significant.

On the other hand, interventions such as speech and language therapy, physical therapy, and occupational therapy demonstrate results. “They help children learn to speak and to master (or improve) object control and balance. They also help parents model and teach social skills and decrease aggressive or antisocial behaviors,” says Dr. Jeste. “At UCLA, we're using EEGs to study exactly how these therapies affect the brain to rewire behaviors. We expect to have data to report within a year.” Other clinical trials are underway to test medications that may address the core symptoms of autism, says Dr. Holler-Managan.

HAPPY FAMILY

HAPPY FAMILY

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PROMISING RESEARCH

Early interventions that maximize social and cognitive development—bringing children into a community of peers through speech therapy, occupational therapy, and other means—increase their ability to communicate and interact with their world, says Roberto F. Tuchman, MD, FAAN, a pediatric neurologist and director of the Autism and Neurodevelopment Program at Nicklaus Children's Hospital in Miami, who focuses on the relationship between ASD and other conditions such as epilepsy.

Children who achieve meaningful language before school age are better able to learn and are more likely to become independent adults, says Dr. Zimmerman. A study published in Pediatrics in 2009 suggested that intervention for kids as young as 2 and a half could significantly raise IQ. Likewise, a 2014 study in the Journal of Developmental and Behavioral Pediatrics suggested that parental coaching in 15- to-20-minute play sessions and daily routines lasting up to a total of two hours increases children's functional development.

A recent trial using low-dose suramin, a medication used to treat serious parasitic infections such as African sleeping sickness and river blindness, showed transient improvements in language, social interaction, and restricted or repetitive behaviors, according to a 2017 report in the Annals of Clinical and Translational Neurology. Suramin is not currently approved for the treatment of autism, and further investigation is planned.

The very small suramin study at the University of California San Diego School of Medicine was aimed at exploring the role of metabolic dysfunction or impaired communication between the brain, the digestive system, and the immune system, which some researchers believe may cause ASD, chronic fatigue syndrome, and some autoimmune disorders.

“Parents of children with ASD ask about medications all the time,” says Dr. Jeste. “I tell them our goal is treatment, not a cure. I also tell them that because ASD takes so many different forms, future treatments will likely involve very targeted medications. Although the suramin study was small, it suggests one such potential treatment.”

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SEEKING SUPPORT

Experts in ASD recommend education and training for parents from accredited support groups. For the Jacksons, the nonprofit organization Autism Speaks was a significant source of support at the right time. Founded in 2005, the year CJ was born, the group's mission is to spread awareness of the disorder, raise money for research into its causes and potential interventions, and support parents.

“After CJ was diagnosed, I found a resource page on the Autism Speaks website that listed books to read when your baby is first diagnosed, therapies to look for, and schools that can help. At the time, that was the only support I could find,” recalls Veronica. Today, Autism Speaks offers the 100-Day Kit for Newly Diagnosed Families of Young Children, which focuses on education, treatments, and support for families with children ages 4 and younger.

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GIVING BACK

Christopher and Veronica leverage their celebrity to help other parents navigate autism therapies and interventions, and they are appreciative of the positive impact Autism Speaks has had on their lives. “The community was still finding itself,” says Christopher, recalling the early years of the organization, just as he and Veronica were grappling with CJ's diagnosis and needs.

“Everything about having a child on the spectrum is about perspective and understanding what is useful and what isn't. Since then, the autism community has grown,” he says.

The Jacksons have participated in walks to raise funds for the organization, and in June Christopher performed as part of the “Arts for Autism” benefit for Autism Speaks at Broadway's Gershwin Theatre. For parents of children with ASD who do not have insurance or the financial resources to support robust early intervention, Autism Speaks and other advocacy groups offer advice on navigating special education programs in public schools and information on available financial aid.

Nevertheless, Christopher does not shy away from addressing a central controversy in the organization's mission. “Autism Speaks raises a hot-button issue because it is focused on finding a cure,” he says. “A person on the spectrum doesn't need to be cured, a person needs to be accepted. I want to use our platform for more than just aligning with an organization.”

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SEEING THE FUTURE

As he enters early adolescence, CJ is doing well academically—as long as he's interested in the topic, says Veronica. “He has a hard time focusing on things that don't interest him. Of course, he'll talk about a topic of interest for a half-hour at a time.” His current passion is the video game Skylanders, says Christopher. “He can see the characters come to life, watch their stories on TV, read along, and really get into the personalities and the game. And he's an obsessive collector. He wants to own figures of all the characters.”

Christopher says he and Veronica try to harness CJ's passion to encourage other, less appealing tasks such as homework, chores, and ongoing therapies. “When you realize your child can't experience the world or be protected in it, you want to do all you can to help prepare him,” Christopher says. “We've done everything we can to remove those challenges.”

CJ's autism is now considered mild-to-moderate, and he can come across as a higher-functioning child at first glance. Although the Jacksons were initially told their son might never speak, he is now very verbal, says Veronica. “But like many kids with ASD his age, he still struggles with sensory issues and self-regulation.”

CJ also adores his sister—although that was not always the case, Veronica says. Like many older siblings, CJ went through a period of resentment when she first arrived home from the hospital. That period may have lasted longer due to his autism, but today Jadelyn is the center of his universe, says Veronica.

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A PROACTIVE APPROACH

To deal with the challenges of being the sister of someone on the autism spectrum, Jadelyn participates in a support group for siblings where she learns from professionals and peers the importance of patience and acceptance, as well as some of the tools that help parents.

CJ continues to have difficulties with peers, says Veronica, admitting that she has “a lot of concern about his future.” For all his progress in speech and accomplishing tasks, she says, he still has social anxiety and trouble with some classmates because of his sensitivity to loud noises, bright lights, and overstimulation, which can be overpowering.

“We want to make sure we're on top of all his needs and provide all the support he requires in his teen life and his adult life,” Veronica says, adding that she is fortunate to be able to devote so much time to caring for CJ. “Some days he gets off the bus from school in a complete meltdown, and I have to soothe him for hours, lying on the floor. We want to teach CJ to regulate himself—to give himself a ‘time out’ before he feels overwhelmed by his environment—to deal with his day-to-day trials.”

The Jacksons' proactive approach is right on target, says Dr. Tuchman. “The more a child with ASD achieves independence, the more likely he or she is to be an independent adult,” he says. “Early intervention and continued follow-up can make a significant difference in improving cognitive and social development for children through adulthood,” adds Dr. Zimmerman.

“I'm still worried about CJ being in a world that may not want to help him. Our society needs to make room for people like CJ,” Christopher says. “We've been fortunate; he's come a long way. Our collective push is to continue talking about this and to help other families so they know where they can have access to some relief and a community of parents to say, ‘You're not crazy. You're not doing it wrong. Yes, get help.’”

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FINDING JOY

The Jacksons have learned what autism means on many levels—not merely the obstacles their son faces, but also the potential for joy. “His innocence and his love of his family—and babies these days!—is just beautiful,” says Veronica. “He draws pictures with hearts that say, ‘My family is the best.’”

“There's so much beauty in it,” Christopher says. He recalls a recent snorkeling trip in which CJ was leery of getting in the water, but was content to float on a raft. Family and friends took turns snorkeling so they could hang out with CJ on his raft.

As Christopher tells the story, it's hard not to call to mind the lyrics of the song he co-wrote to 'introduce Julia, Sesame Street's new Muppet with ASD, to her young audience: “For some of us it's harder to reach out as others do / But when you just look closer you'll see amazingness show through / We each have our own ways to see the world and show we care / But we know we can be friends 'cause there's so much that we share.”

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Resources for Autism

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A Muppet with Autism

COURTESY: ZACH HYMAN/SESAME WORKSHOP

COURTESY: ZACH HYMAN/SESAME WORKSHOP

In 2009, while performing in the musical In the Heights, Christopher Jackson started writing songs for Sesame Street, the long-running PBS children's series. “Everyone knew my son, CJ, was on the autism spectrum. We had conversations about how great it would be to do something on the show for families living with autism.”

While Jackson notes that he was not the only “sparkplug” behind this idea, he is proud to have been part of the conversation that eventually led to the debut of Julia—a 4-year-old, red-haired Muppet with autism—in April 2017.

Jackson collaborated with the Emmy-winning screenwriter and lyricist Christine Ferraro on Julia's introduction song, “Amazing.” Ferraro has a brother on the autism spectrum, and Stacy Gordon, the puppeteer who brings Julia to life, has a son on the spectrum. “For me to be able to contribute in this way is very gratifying,” says Jackson.

Julia brings autism awareness to a new, younger audience, showing viewers as well as fellow Muppets Elmo and Abby that she interacts with her world differently from other kids, listens differently, and speaks differently. Presented without judgment, Julia's differences, including challenges with focus, repetitive behaviors, and echoing words and phrases other people say, are accepted and even celebrated.

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Autism: The Basics

WHAT IS AUTISM SPECTRUM DISORDER?

Autism spectrum disorder (ASD) is a range of neuro-developmental symptoms that can include challenges in communicating and interacting, repetitive behaviors, and extreme sensory sensitivities.

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WHAT ARE THE SYMPTOMS?

Common symptoms include intense focus on objects, not making eye contact, difficulty communicating, repetitive behaviors like rocking, difficulty with changes in routine, and problems interacting with peers.

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WHAT ARE THE CAUSES?

No causes have been identified, but research suggests that genetics and environment may play a role and that the differences in the brains of people on the spectrum begin early in the development process.

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HOW IS IT DIAGNOSED?

ASD is diagnosed by a team of experts, including a neurologist, psychologist, psychiatrist, speech therapist, and other professionals who conduct a neurologic assessment and cognitive and language testing.

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WHAT TREATMENTS ARE AVAILABLE?

Early interventions such as speech and language therapy, occupational therapy, and physical therapy are strongly recommended to encourage cognitive and social development among peers, which prepares children for adult interactions and independence.

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WHAT RESEARCH IS BEING DONE?

The National Institute of Neurological Disorders and Stroke (http://ninds.nih.gov) established the Autism Coordinating Committee 20 years ago to enhance the pace and quality of research around autism. Research focuses on finding a cure as well as on brain function and development and possible biomarkers.

© 2017 American Academy of Neurology