May 2021 Issue
Children With Disabilities and Obesity
By Jennifer Van Pelt, MA
Vol. 23, No. 5, P. 22
A Review of the Factors Increasing Obesity Risk and Successful Nutrition and Physical Activity Interventions
Obesity is a growing concern for children and adults in developed countries due to myriad lifestyle, environmental, and genetic factors. Adding a disability to these factors substantially increases the risk of obesity. Children with disabilities are especially susceptible to obesity. According to the National Center on Health, Physical Activity and Disability, the prevalence of obesity in children with disabilities is almost twice that of children without disabilities. And those with intellectual and developmental disabilities (IDDs) have as great or greater risk of obesity than those with physical disabilities.
The Academy of Nutrition and Dietetics (the Academy) notes that almost 50% of children with autism spectrum disorder (ASD) and Down syndrome have overweight, and 25% of those with ASD and 31% of those with Down syndrome have obesity. Eating behaviors associated with IDDs often contribute to weight gain, and lack of physical activity due to a variety of factors adds to obesity risk. According to the Academy, only one-third of children with special health care needs participate in regular physical activity.1 This article reviews the factors that increase risk of obesity for those with IDDs and discusses dietary and physical activity interventions that can help prevent and/or manage obesity.
Factors Contributing to Obesity
Chris Russell is founder and owner of Fitness 4 Focus, which provides fitness programs for children and adults with disabilities, including autism, Down syndrome, other IDDs, poststroke disability, and traumatic brain injury. “Currently, about 75% of our athletes have a diagnosis of autism, and possibly a secondary diagnosis. About 15% have a diagnosis of Down syndrome,” he says. Obesity is common among participants in Russell’s programs—about 75% have obesity or overweight when they sign up. “I believe there are several reasons for such high percentages of obesity,” Russell says. He cites lack of proper introduction to healthful foods at an early age, food texture issues common in youth with IDDs, and lack of instruction on proper eating habits as common nutrition-related factors contributing to obesity.
Down syndrome and ASD are the most studied IDDs related to factors increasing risk of obesity. Preventing and managing obesity in this pediatric population is important given that obesity may significantly raise risk of heart disease, type 2 diabetes, certain cancers, hypertension, liver and gallbladder disease, sleep disorders, and stroke. All of these add to the daily health burden and future adult health of children with disabilities, making weight management through nutrition and physical activity interventions especially important for improved quality of life.
The Centers for Disease Control and Prevention states that, for children with these disabilities, weight management, physical activity, and healthful eating are more difficult due to the following factors2:
• difficulties chewing or swallowing food, or problems with its taste or texture;
• medications that contribute to weight gain and changes in appetite;
• physical limitations or problems with motor coordination and balance that decrease mobility and ability to be active;
• lack of energy;
• lack of accessible environments for physical activity, such as disability-accessible parks, gyms, and exercise equipment; and
• lack of resources (eg, financial, transportation, family and/or community support).
Physiological and behavioral characteristics of IDDs strongly influence the ability to be physically active. Children with Down syndrome have reduced muscle strength, motor coordination, and balance; they also may have congenital heart defects and visual or hearing impairment. All of these contribute to a greater risk of obesity.3 “The increased prevalence of obesity in those with Down syndrome is related to hypotonia, decreased energy expenditure, and low levels of physical activity,” says Lauren Ptomey, PhD, RD, LD, an associate professor in the department of internal medicine at the University of Kansas Medical Center and a coauthor of a position statement from the Academy on nutrition services for those with IDDs. “In addition, there is some evidence that individuals with Down syndrome may have higher levels of leptin than their typically developing peers,” says Ptomey, who’s also an active researcher and published author of several weight management studies of children and adults with disabilities.
Leptin, often called the “satiety hormone,” regulates the amount of food consumed and appetite inhibition. Research has suggested that obesity involves leptin resistance, in which the brain no longer responds to the hormone. Comparative studies of leptin levels have reported higher leptin concentrations in those with Down syndrome and ASD compared with those without these IDDs.4,5
In addition to physiology, social and behavioral factors may prevent participation in and enjoyment of physical activity, and, in combination with physical factors, lead to a preference for more sedentary and solitary activities, such as TV watching, computer use, and video games. Sensory overload, communication difficulties, and inflexibility of daily routines also can interfere with ability to tolerate group activities. And caregivers of children with IDDs have cited the significant amount of weekly time spent in therapy activities as a barrier to allocating time for exercise.4,6,7
Research has shown that children with IDDs tended to engage in more light-intensity physical activities than moderate- or vigorous-intensity activities compared with age-matched children without IDDs. Since more intense physical activity can improve weight loss or management as well as fitness, strategies to increase exercise intensity for youth with IDDs are needed.3,6
Interventions for Managing Obesity and IDDs
Despite the numerous studies on causes of obesity in children with IDDs, very little research has been published on effective weight management strategies for youth with IDDs. According to the Academy, there are currently no recommendations or guidelines specifically geared toward nutrition and physical activity for those with IDDs.1,8 Research has shown that while obesity interventions focused on exercise alone improved fitness and motor skills, they were insufficient in achieving weight loss in children and adolescents with Down syndrome and ASDs.5,6
For better outcomes, obesity interventions for youth with IDDs should incorporate both nutrition and activity. “The most successful interventions are multicomponent weight management interventions that target changes in diet, physical activity, and behavior,” Ptomey says, adding that interventions targeting parent behaviors may lead to even greater success. She highlights two of the largest ongoing studies of multicomponent interventions for children with IDDs.
“The first, a National Institutes of Health–funded randomized study by the University of Massachusetts … compared a family-based behavioral intervention to a delayed treatment group, and then a family-based weight maintenance intervention to a no-treatment group,” Ptomey explains. The dietary intervention used was the Healthy Eating Plan (HEP), a calorie-based tool designed to organize an simplify daily food choices for those with limited literacy; daily recommended servings from each food group are displayed as pictures. The HEP tool was developed for children, adolescents, and young adults with IDDs to help them improve dietary choices and assist with weight loss with the guidance of an RD and in conjunction with a family-based program of behavioral support.9
The physical activity intervention involved evaluation and education with a physical therapist, who developed a physical activity plan that was provided in a notebook with simple messages and drawings of exercises, such as brisk walking or dancing, strength training, and stretching. Parents were taught to use the HEP tool and activity plans with their children, and both parents and children participated in education about food choices and exercise. Promising pilot data were reported from this study in 2013. Researchers found that the parent-supported behavioral interventions for nutrition and exercise helped children with Down syndrome lose weight.10
The second study, also funded by the National Institutes of Health, was conducted by Ptomey and her colleagues at the University of Kansas Medical Center. The randomized trial compared the efficacy of face-to-face home visits with remote delivery via video conferencing on a tablet, and the Stop Light Diet plus portion-controlled meals vs a conventional meal plan diet, for weight loss and weight maintenance over 18 months in adolescents with IDD, Ptomey says. Adolescents with overweight or obesity and IDD participated in 30-minute one-on-one behavioral lifestyle sessions with a trained health educator every two weeks for 18 months to help maintain compliance with and self-monitoring of a reduced-energy diet (approximately 500 kcal less per day than estimated energy expenditure) and increased physical activity (60 minutes/day at least five days per week).11
Two-month pilot results for the remote delivery arm were published in 2015. Researchers found that parents and children using a tablet computer to meet weekly via video chat with a dietitian for feedback and education, as well as track daily diet and activity, promoted weight loss for adolescents with IDD following either a conventional diet or an enhanced Stop Light Diet.8 Data collection for this study and the University of Massachusetts study recently was completed, and final results are expected to be reported soon, Ptomey says.
In another study, Ptomey and her colleagues evaluated videoconferencing technology to remotely deliver physical activity to adolescents with IDDs.12 Completed research demonstrates that a group physical activity program delivered over Zoom was feasible and well accepted,” Ptomey says. An ongoing study is evaluating remote delivery and the impact of parental involvement on physical activity changes in adolescents with IDDs. Parents will attend group exercise classes via videoconferencing with their children and also receive monthly behavioral education related to physical activity. This study is focused on determining whether remote delivery of exercise programs with parental involvement can increase participation in moderate to vigorous physical activity for youth with IDDs by eliminating the common barriers of reliance on parents for transportation to exercise programs and lack of inclusive exercise activities for this population.7
Conversely, there are fitness facilities that cater to special needs children and adults offering inclusive exercise activities that are growing in popularity and accessibility due to their success. Fitness 4 Focus operates three facilities across central Pennsylvania and one in Charlotte, North Carolina, and also offers virtual fitness classes online. Russell says one of the most effective interventions to manage obesity in children with disabilities is to teach, encourage, and implement daily exercise. His programs have specially trained staff and equipment and activities modified for those with disabilities, coupled with motivational coaching. Russell’s programs also offer nutritional guidance for parents and children.
“Our name, Fitness 4 Focus, was inspired from our goal of helping all those with developmental disabilities to improve in four specific and related areas: strength, coordination, cognitive abilities, and overall wellness,” Russell says. “Our approach is to address these through exercise and related activities.”
During his 15 years offering special needs fitness programs, he has had numerous conversations with parents about implementing better diet and exercise routines with their children. Russell says nutrition professionals can help parents of children with IDDs effectively manage their weight by discussing healthful food options, providing strategies to reduce excessive eating and manage food intake, and prioritize healthful eating and regular exercise as a family.
Research by Ptomey and others supports the multicomponent interventions practiced by Russell in his inclusive fitness programs. Encouraging results from ongoing studies suggest that remote delivery of physical activity and nutrition programs for youth with IDDs can be just as effective as face-to-face sessions. More accessible and inclusive options for exercise, as well as parental involvement in nutrition interventions, hopefully will help reduce the prevalence of obesity in children and adolescents with IDDs such as Down syndrome and ASD.
— Jennifer Van Pelt, MA, is a certified group fitness instructor and health care researcher in the Lancaster, Pennsylvania, area.
• National Center on Health, Physical Activity and Disability: nchpad.org
• American Academy of Pediatrics: pediatrics.aappublications.org/content/145/Supplement_1/s126
1. Ptomey LT, Wittenbrook W. Position of the Academy of Nutrition and Dietetics: nutrition services for individuals with intellectual and developmental disabilities and special health care needs. J Acad Nutr Diet. 2015;115(4):593-608.
2. Disability & obesity. Centers for Disease Control and Prevention website. https://www.cdc.gov/ncbddd/disabilityandhealth/obesity.html. Updated September 16, 2019.
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9. Weems M, Truex L, Scampini R, Fleming R, Curtin C, Bandini L. A novel weight-loss tool designed for adolescents with intellectual disabilities. J Acad Nutr Diet. 2017;117(10):1503-1508.
10. Curtin C, Bandini LG, Must A, et al. Parent support improves weight loss in adolescents and young adults with Down syndrome. J Pediatr. 2013;163(5):1402-1408.e1.
11. Donnelly JE, Ptomey LT, Goetz JR, et al. Weight management for adolescents with intellectual and developmental disabilities: rationale and design for an 18 month randomized trial. Contemp Clin Trials. 2016;51:88-95.
12. Ptomey LT, Willis EA, Greene JL, et al. The feasibility of group video conferencing for promotion of physical activity in adolescents with intellectual and developmental disabilities. Am J Intellect Dev Disabil. 2017;122(6):525-538.