Feature Physical Therapy for People With Autism PTs explain why their role—nonexistent not so long ago— is vitally important today. By Eric Ries | July 2018 "Autism has been at the forefront of my adult life, on the job and at home," says Karen Tartick, PT. "I understand it as a physical therapist and I understand it as a parent." What Tartick, a longtime physical therapist (PT) for the Durham Public Schools in North Carolina, understands professionally is that PTs like her, working with other members of an Individualized Education Plan (IEP) team, can enhance the lives of children with autism. She knows—from a growing body of evidence-based research and her own practice—that PTs can help children with autism more fully participate in daily routines at home and at school, acquire new motor skills, develop better coordination and more stable posture, improve their reciprocal-play skills (such as throwing and catching a ball with another person), develop motor imitation skills (copying an action performed by someone else), and increase their fitness and stamina. "The great thing for PTs is that exercise and structured play groups both are evidence-based practices for children with autism,"1,2 Tartick says. "That is absolutely beautiful to me, because facilitating and promoting exercise and wellness is such a huge part of what PTs do. And it's been shown to have positive effects in children with autism that extend beyond physical health. It can decrease their maladaptive behaviors and aggression, make them more on-task, improve their academic abilities, and have a big, positive impact on their quality of life." What saddens Tartick, however, is that none of that was known when her son Eric was diagnosed with autism at age 2 in 1993. The focus then generally was limited to development of language and social skills. The literature now recognizes the presence in many children with autism of motor (movement) impairments affecting muscle tone, motor development, coordination, and motor planning, with treatment emphasis widened to address neurological issues and motor skills. Eric Tartick, now 27, has the most severe form of what's officially been known as autism spectrum disorder, or ASD, since the American Psychiatric Association in 2013 issued the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5). The single ASD diagnosis encompasses what formerly were 3 separate diagnoses—autistic disorder, Asperger syndrome, and pervasive developmental disorder not otherwise specified. The term "spectrum" allows for variations in symptoms and behaviors—from milder though not insignificant deficits that "require support" (Level 1) to severe deficits that require "very substantial support" (Level 3). Eric Tartick lives at home with his parents, who are on a waiting list for group home placement. He is morbidly obese and faces a plethora of health concerns related to that condition. The reasons for his overweight, his mother says, are threefold: a "terrible diet" because he's an "extremely picky eater" who shuns certain food textures and favors unhealthful food; medications for behavior issues and seizures (the latter being a frequent comorbidity of autism) that cause weight gain; and lack of physical activity because Eric often refuses to engage at length in any sort of exercise. His mother speculates that if Eric were in school now—benefiting from today's approach in which PTs work collaboratively with special education teachers, occupational therapists, speech pathologists, and physical education teachers to meet the challenges and needs of children with autism—her son's trajectory with regard to medications and exercise might have been quite different. "Looking back on Eric's school career, I wish he had been taught how to use a treadmill, or an exercise bike, or an elliptical machine—any way to burn calories," Karen Tartick says. "School PTs can make a big difference in promoting the health and well-being of children with ASD by teaching them the importance of exercise, physical activity, and movement—and by doing it in a fun way, tapping into whatever is motivating to the child." She cites firsthand experience. "I've collaborated with an adapted PE teacher at 1 of the high schools to instruct students with ASD on how to walk on treadmills, peddle exercise bikes, and jump on a trampoline—giving them their choice of activity and their pick of music, to make it fun," Tartick says. "This was in the school's fitness center, in the same room where the football players were using the weights. It was a great way to introduce exercise in an inclusive setting. Seeing how well the students with ASD learned in that setting, I can't help but wish that exercise and movement breaks had been built into Eric's daily routine at school." Had her son been able to benefit from what PTs know now, "there's a chance Eric would not have needed to be put on medications as early as age 6 for mood regulation, and that his aggressive behaviors might have been reduced because of the now-recognized benefits of active movement," Tartick says. "If we'd had today's knowledge, we certainly would have pushed for 10-minute exercise breaks throughout Eric's school day—especially before transitions between activities, which created anxiety and could exacerbate behavior issues." Tartick says she's making some progress with Eric on the treadmill by employing such evidence-based visual supports as showing him pictures that sequence what he'll be doing and shooting video of him walking on the treadmill. The footage of Eric successfully performing the activity then is shown to him repeatedly—what's known as video self-modeling. "As parents, we're doing our best to promote better health through exercise and diet," Tartick reports. "We walk with Eric as often as we can, and we work on his food choices. Still, I wish he'd been able to benefit much earlier in life from the positive effects of exercise and movement breaks on physical health, behavior, and self-regulation." "At age 27, I believe it's harder for Eric to learn, because he has become more fixed in his routines," Tartick continues. "He's also very aware of his size—when he refuses to start or continue a beneficial activity, there's little I can do. I'm 5-foot-2 and weigh 100 pounds. He's 6 feet tall and about 270. While I can't say for sure, I believe that if Eric had learned to exercise and had experienced the joy of moving in the company of his peers, he would have understood that this was what was expected. I think it would have become an activity he recognized as part of his routine early on. Learning within an environmental context is important for all children, but especially for those with ASD." More Than Meets the Eye The Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children in the United States has autism—1 in every 42 boys and 1 in every 189 girls.3 That's up substantially from the CDC's estimate of 1 in 150 children in 2000, the year the agency began statistically monitoring the disorder. Experts say the increase likely stems from growing awareness of autism and changes in diagnostic criteria rather than from a growing epidemic of unclear origin.4 (See "What Causes Autism?" on the facing page.) Regardless, the PTs interviewed for this article say, it's increasingly likely that PTs who see children in their practice will encounter those who have autism or are at increased risk of developing it, if they aren't seeing them already. That's why it's important, these PTs say, for their peers to recognize risk factors, signs, and symptoms—and to understand the role physical therapy can and should play, from pre-diagnosis through adulthood. Risk factors include a sibling with autism, older parents at time of birth, and premature or underweight birth.3 Signs and symptoms include difficulties in social communication and interaction such as avoiding eye contact and limited interest in peers; tendency to engage in restricted and repetitive patterns of behavior such as obsessively lining up toys and repeatedly slapping their arms; and such movement-related characteristics as delays in both large-movement skills (walking, jumping) and small-movement skills (typing, tying shoes), difficulty imitating the movements of others, lack of coordination, poor balance, difficulty planning and repeating movements or performing them in a specific order, instability when walking, difficulty controlling posture, and decreased hand-eye coordination.5 It's important for PTs who see pediatric patients to be cognizant of all that, says Liliane Savard, PT, DPT, because "a large majority, if not all, children with autism have movement difficulty, and thus will benefit from physical therapy." She cites studies showing that toddlers ages 12 to 33 months later diagnosed with autism have age-equivalent "mean motor delays of 6.4 months in gross motor skills and 9.5 months in fine motor skills,"6 that delayed motor skills in children with autism increase with age,7 and that fundamental motor skills "that are more complex and usually develop through imitation and social or individual play are significantly impaired" in this population.8 "I would like physical therapists to understand that there's a movement-control disorder that goes along with autism, even in children who appear to be high-functioning," says Savard, a board-certified clinical specialist in pediatric physical therapy. "Yes, they can walk. They might walk differently, but they can walk. They can climb. Motor issues aren't the first thing that jumps out at parents and physicians. But when you test these kids, and the literature shows, their movement patterns are abnormal, and they have significant motor delays. "PTs are movement system experts who understand motor learning, so we can help these kids develop their motor skills," Savard continues. "We can design interventions to help them learn the movement patterns necessary for them to be successful in interacting with their peers and more fully participating in life." She saw her first children with autism at the dawn of this century, in school and outpatient settings. She was fascinated and flummoxed from the start by the condition and how it manifested in her young patients, who ranged from "very involved to very high functioning." Savard, herself a new mother at the time, was "appalled by the challenges these families were facing." "This was 15 or 16 years ago," she says. "I started reading everything I could find about autism. At first, it was mostly just basic science." Over the ensuing years, she did her best to apply the available research to physical therapy. "I worked on developing relationships with the children so that I could get them to engage in activities that would enhance their motor skills and build their strength." It could be frustrating, even maddening. But she found she liked the challenge. One early patient was particularly significant in Savard's development as a PT treating children with autism. "I met this child 13 years ago, when she was about 2½," Savard recalls. "She would run from her parents' reach, which endangered her safety. I came across many early studies on visual tracking differences in children with autism and looked for ways to slow her down through visual stimuli that would engage her in walking with her parent. We looked at flowers together and brought them to her mother. We placed a balloon in plain sight while her behavioral therapist helped her wait to retrieve it. That game progressed to hiding the balloon and looking for it. It finally morphed into a game of hide-and-seek on her preschool playground." Those types of activities have since been part of Savard's interventions when working with children with autism. "The specifics will look different depending on the interests, functional abilities, and social play needs of the child," she says. "But the concept of using these strategies to develop gross motor coordination is always present in the back of my mind when I'm assessing and treating a child with autism." Another formative patient for Savard was a teenager with whom she worked 8 years ago. He was nonverbal and communicated via supported typing—a highly controversial method by which a facilitator helps guide a person with communication impairments toward the message he or she wishes to convey by holding or gently touching the individual's arm or hand over an alphabet board or keyboard. The teen "could type for hours without maladaptive behavior or sensory dysregulation," Savard recalls—so, in that sense, the activity was productive. What resonated most with her, however, was that "the person who was using this strategy to promote volitional moment was not a movement system expert." Savard recalls sitting in her parked car at one point, "devastated to think that this young man was locked in his own body"—wanting to communicate but being able to do so only in a dubious, scientifically discredited way. She ultimately was able to help the teen learn a swimming technique by using beads on a string to count laps and alerting him to next steps by drawing on a whiteboard. But her inability to improve his ability to communicate frustrated her. "I have ever since been obsessed with exploring motor learning strategies that can help people like that young man control their movement independently and volitionally," Savard says. Cornerstone characteristics of Savard's approach to promoting motor learning in children with autism are positive expectancy (helping the child believe that he or she can do the activity), autonomy support (allowing the child to make choices), and external focus of attention (for example, focusing on a ball's movement or target rather than the body's movement in throwing the object). "When you express confidence that a child with autism can do something, set up a task that's relatively easy for him or her to achieve, and provide an environment that isn't overly stimulating, it's my experience that the child can learn to a degree that's often surprising," Savard says. "Also," she adds, "we know from the literature that when you follow the lead of kids with autism, they're more likely to have positive outcomes. Offering them choice—giving them agency—is very important." Savard cites in particular research from the Early Start Denver Model,9 a play-based approach that fuses behavioral and developmental principles. (For another perspective on the intersection of physical and behavioral therapies, see "Bridging a Gap" on page 60 of this issue of PT in Motion.) "An additional consideration," Savard says, "is that the more a child with autism focuses on the movement he or she is being asked to perform, the harder it will be for that child to perform the movement. This isn't true just of children with autism—the value of external focus of attention has been extensively researched in different populations over the last 15 years." In fact, Savard notes, the 3 tenets of motor learning that she's long adapted specifically to use with children with autism—positive expectancy, autonomy support, and external focus of attention—were cited in a 2016 study10 as keys to optimizing motor performance in all populations. Motor Advocacy Anjana Bhat, PT, PhD, MS, emphasizes the importance of PTs taking what she calls a "whole-child approach" to treating children with autism. "You might get a consult to address toe-walking, which is pretty common in children with autism. But what about motor-planning issues?" Bhat asks. "Can this child move freely in his environment? Can he keep up and move fast enough? Can he deal with the dynamic nature of our school hallways? On the playground, is the child with autism interacting and engaging with peers, or sitting on the side? What can you do to promote peer play? "You can't address just a single issue or skill," says Bhat, an associate professor in the Department of Physical Therapy at the University of Delaware. "You must look at the whole child. It's important to use motor play to promote other social and communication skills." Bhat is a researcher with active or completed grants from entities including the National Institutes of Child Health and Human Development, the National Institutes of Mental Health, and the advocacy organization Autism Speaks. "My treatment research has focused on developing creative treatment approaches for school-age children from 6 to 14 years old," she says. "We've developed a number of socially embedded interventions. The idea is to use creative movement to promote social communication and other complex motor skills. We've used rhythmic musical activities to promote motor coordination, and to enhance children's connections with clinicians and caregivers. We've extended this research by adding such contexts as dance and creative yoga." Motor play, Bhat notes, "can have significant cascading effects on social skills such as spontaneous smiling and spontaneous verbalization directed toward others. Children with ASD seem to enjoy creative activities and, as a result, to have fewer maladaptive behaviors such as noncompliance, self-injury, and aggression." Bhat, who also has conducted research on early detection of autism in infants and toddlers, offers the following recommendations for PTs working with these patients: Be a part of multidisciplinary discussions and encourage motor assessments of infants and toddlers with ASD. Look for signs of motor delays in infants who are at risk (premature birth and/or family history). Even if such delays are subtle, encourage motor play to address delays, low postural tone, and lack of movement variability. Infants who are at risk may tend to lie in the same body position and may move less than what is age-appropriate. Ask caregivers to engage in motor play activities to encourage infant-caregiver interaction (social, object, and postural play). Be advocates for early motor interventions for infants, toddlers, and preschoolers who are at risk for autism. Bhat also offers the following recommendations for PTs working in school settings: Seek inclusion on the IEP team if physical therapy is not being offered to children with autism. Recommend motor evaluations for children with ASD and share motor treatment ideas. Recommend adaptive modifications and motor skills training to promote the child's attentional focus in class, transitions during the school day, and peer play in the gym and on the playground. Apply a variety of motor-learning principles, identifying themes that best engage the child. "There's a huge role for PTs to play in developing and promoting the motor system as the enabler," Bhat says. "It enables children with autism to better explore their environment, communicate with others, and participate in their world. PTs must be motor advocates for children with autism." After Graduation Children and young adults with autism are ensured special education and related services through age 21 or until high school graduation through the Individuals with Disabilities Education Act (IDEA). After that? "Forget it," says Angela Gowans, a special education advocate in New England whose son with autism is a former patient of Liliane Savard. "Once [the recipient of services under IDEA] has hit that birthday, it's done." In fact, she says, she just got off the phone with a mother whose issue is all too common in Gowans's line of work. "This client's son is an eighth-grader with autism," Gowans says. "He has average cognitive ability but is reading 6 years behind grade level. He needs a highly specialized reading program. We'll advocate for that with the school system, because this kid can read and write—he just needs to be taught in a certain way. But time already is running out for him. How are we going to get him the skills he needs to function optimally in adulthood by the time he graduates from high school? Because after that, there's really nothing. The clock is ticking." Similarly, the clock too often stops after high school, say the PTs interviewed for this article, for individuals with autism to receive the help they need with issues of health, social interaction, and employment. That, these PTs add, is another arena for PT participation. "These kids need resources for recreation, leisure, and employment after high school," Tartick says. "We should be advocating for transition planning for students with autism—mandated at age 14 under IDEA—and we need to be thinking about their future as early as the elementary school years. That way, we can fully investigate and advocate for the kinds of programs these students will need in adulthood for employment, supported or independent living, and recreation and leisure." A report issued last year found that only 14% of adults with autism who had received state developmental disabilities services held paid jobs in their communities.11 "Approximately 50,000 individuals with autism graduate from high school every year," Tartick notes.11 "PTs can play an important role in their future success, especially given that decreased levels of physical activity, obesity, and sedentary lifestyles are very common in adults with ASD." "Most adults with autism have a continued need for services, but in most communities those services simply are not developed right now," Bhat echoes. "PTs should be involved in developing group exercise programs at community centers, or through hospitals or private clinics, to improve physical activity and social interaction in adults with ASD. They also might consider getting involved in efforts to promote functional skills, job skills, greater independence, and increased community participation in adults with ASD." The Fun Factor Bhat first encountered children with autism as a researcher in 2005. Her first thought, she recalls, was, "These children can walk and move around. Perhaps that's why PTs have a lesser role to play in their treatment." Her thinking on that has come a long way in the past 13 years. "We now know that children with autism face challenges in the areas of complex motor coordination, planning, balance, and imitation of and synchrony with others," she notes. "There is so much that PTs can do to address these problems now—and so much more that we may be able to do if we continue to focus on developing effective motor treatments." "The challenges parents face are intense—significant behavioral, communication, and affective issues," Bhat observes. "It's their resilience, and their determination to improve their children's independence, that make me want to stay in this field. Autism is such a complex developmental disorder. So many questions remain on how it develops—the most popular hypothesis is the 'connectivity theory,' which posits that there are poor connections among different brain regions that account for the complex clinical symptoms of ASD. I will keep looking for effective and engaging treatments that may improve the brain connectivity in children with autism." If all of that sounds heavy, there's something Jan McElroy, PT, PhD, wants the PTs and physical therapist assistants reading this article to know about working with children with autism—a population that's often narrowly seen as minimally expressive, behaviorally difficult, and challenging to engage. "They're delightful children, and fun to work with," says McElroy, who's on the faculty of a grant project in Missouri that trains PTs to care for children with autism and other developmental issues as part of an interdisciplinary team. She is a board-certified clinical specialist in pediatric physical therapy. "PTs get to bring fun into the lives of these children and their families when so much else in their lives is stressful," McElroy notes. "When it comes to the strategies we employ to promote movement, I think we have the corner on fun." That squares with the whimsical name of Savard's private practice—Zippy Life. "I chose that name," she says, "because it encompasses all of the 'F words' that Peter Rosenbaum has used to describe how we should think about child neurodisability in our clinical service, research, and advocacy efforts12—function, family, fitness, fun, friends, and future. A 'zippy life' is what I want for all of my clients." Eric Ries is the associate editor of PT in Motion. What Causes Autism?Autism spectrum disorder (ASD) has no single known cause. Given its complexity, and the fact that symptoms and severity vary, there probably are many causes. Both genetics and environment may play a role.Genetics. Several different genes appear to be involved in ASD. For some children, it can be associated with a genetic disorder, such as Rett syndrome or fragile X syndrome. For other children, genetic changes (mutations) may increase the risk of ASD. Still other genes may affect brain development or the way that brain cells communicate, or they may determine the severity of symptoms. Some genetic mutations seem to be inherited, while others occur spontaneously.Environmental factors. Research-ers currently are exploring whether factors such as viral infections, medications or complications during pregnancy, or air pollutants play a role in triggering ASD.One of the greatest controversies in ASD is whether a link exists between it and childhood vaccines. Despite extensive research, no reliable study has shown a link between ASD and any vaccines. Source: Mayo ClinicWheel SolutionsClaudia Pringles and Angela Gowans emphasize that Liliane Savard, PT, DPT, has helped their children—a daughter and a son, respectively—better navigate the challenges of autism in a number of respects. But one way that stands out, both say, was when Savard taught their child to ride a bicycle."I get emotional when I talk about this," says Pringles, a Vermont-based special-needs planning attorney. "I'll always remember how Liliane went at it continually with Katarina in the halls of the elementary school the winter that Kat was 9. She helped refine my daughter's bike-riding skills over a period of years. The experience boosted her self-confidence and improved her coordination and balance. Kat is 18 now. She has a nice stride when she walks. There's nothing awkward or noticeable about her gait. Her learning to ride a bike was a big part of that."Which had been exactly Savard's motive."For Katarina and other children with more severe autism, I often use balancing on a 2-wheeler as a tool to work on improving balance and coordination and increasing level of activity," explains Savard, a board-certified clinical specialist in pediatric physical therapy. "Biking on a dedicated bike path continues to be part of her fitness program, with an adult ensuring her safety."In the case of Gowans' son, "Michael," bicycle instruction at age 8 was his mother's idea. (Using her son's real name, she fears, could unfairly stigmatize him in some quarters. She and he have different last names.) "I proposed bike-riding because Michael, whose autism is mild, needed strength training, and help with motor planning and focus," says Gowans, who is a special education advocate for families. "Liliane and I worked together to break down every step of the process. We practiced with Michael often, until he could ride on his own."Michael now is 16. "Bike-riding is key to his independence," Gowans say. "He has high cognitive ability, so he can learn what he needs to know to be safe, and he can get anywhere in town without an adult."Savard believes that Michael's ability to ride a bike "had a direct impact on his other areas of development. It allowed him to keep up with other children in his grade who rode their bikes to the pool during the summer," she notes. "It gave him his own mode of mobility. It exposed him to more complex decision making that will open the door to his possibly driving a car in the future, and which may increase his vocational opportunities."As for Katarina Pringles, with whom Savard still works as a consultant, "She now can master pretty much any new complex motor skill she needs in her life," Savard says. "She just needs a teacher who believes in her and doesn't focus on verbal instruction. As long as Kat can feel the movement—and provided that supports such as peer modeling, visual prompts, video modeling, written steps, and encouraging self-management are used—she can do well.""Kat is a very independent young lady," Claudia Pringles reports. "It's important to her to be her own person and not have somebody around all the time. She thrives on that."ResourcesPhysical Therapist's Guide to Autism Spectrum Disorderwww.moveforwardpt.com/symptomsconditions.aspxConsumer-friendly guide describes signs and symptoms of autism spectrum disorder (ASD), how it's diagnosed, and ways PTs can help.Autism Societywww.autism-society.org/Nation's leading grassroots organization, with close to 100 affiliates. Mission is to increase public awareness of autism and day-to-day issues faced by individuals with autism, their families, and the professionals with whom they interact.Autism Speakswww.autismspeaks.orgOffers support to families and researchers via news, advocacy, and educational resources.Centers for Disease Control and Prevention: Act Earlywww.cdc.gov/actearlyInformation and tools for families and health care providers on tracking and supporting developmental milestones in children birth to age 5.Autism After 16www.autismafter16.comInformation and analysis about adults with autism.Interactive Autism Networkwww.ianproject.orgFacilitates research to advance understanding and treatment of ASD."Using Motor Learning to Help Patients"www.apta.org/PTinMotion/2018/2/Feature/MotorLearning/PT in Motion article discusses this internal neurologic process—key to helping individuals with autism—that occurs via repetition and assimilation and affects one's ability to perform a skill.