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Lessons in Adapting a Family-Based Nutrition Program for Children With Autism

  • Brenda Manzanarez
    Correspondence
    Address for correspondence: Brenda Manzanarez, MS, RD, Children's Hospital Los Angeles, 4650 Sunset Blvd, Mailstop 61, Los Angeles, CA 90027
    Affiliations
    The Diabetes and Obesity Program, Center for Endocrinology, Diabetes and Metabolism, Department of Pediatrics, Children's Hospital Los Angeles, Los Angeles, CA
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  • Samantha Garcia
    Affiliations
    The Diabetes and Obesity Program, Center for Endocrinology, Diabetes and Metabolism, Department of Pediatrics, Children's Hospital Los Angeles, Los Angeles, CA
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  • Ellen Iverson
    Affiliations
    The Diabetes and Obesity Program and Division of Adolescent and Young Adult Medicine, Children's Hospital Los Angeles and Keck School of Medicine of the University of Southern California, Los Angeles, CA
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  • Megan R. Lipton-Inga
    Affiliations
    The Diabetes and Obesity Program, Center for Endocrinology, Diabetes and Metabolism, Department of Pediatrics, Children's Hospital Los Angeles, Los Angeles, CA
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  • Kevin Blaine
    Affiliations
    California-based Nurse-led Discharge Learning (CANDLE) Collaborative, Institute for Nursing and Interprofessional Research, Institute for Nursing and Interprofessional Research, Children's Hospital Los Angeles, Los Angeles, CA
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      Abstract

      Objective

      To evaluate the adaptation and implementation of an existing, evidence-based nutrition program for children with autism and their parents.

      Methods

      Children aged 7–12 years with autism and their parent participated in 6 weekly sessions. Recruitment, intervention, and data collection took place in a community health center in an urban area.

      Results

      Of the 50 referred participants, 38% attended the first classes, and 26% completed the program. Families and staff expressed satisfaction; parents reported increased physical activity, fruit, and vegetable intake in their children. Parents also desired continued learning and individualized recommendations.

      Conclusions and Implications

      Adapting family-centered nutrition programs can positively influence diet behaviors in children with autism. As many children with autism battle with obesity, the findings from this pilot provide important insight into supporting these families and can further inform the development of evidence-based practices currently lacking for children with autism and their families.

      Key Words

      INTRODUCTION

      Autism spectrum disorder (ASD) is one of the most common developmental disabilities in children, affecting approximately 1 in 54 children.
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      Children with ASD have a significantly higher prevalence of obesity and risk for associated comorbidities.
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      • Bonis S.
      Stress and parents of children with autism: a review of literature.
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      Food selectivity in children with autism spectrum disorders and typically developing children.
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      Dietary intake, nutrient status, and growth parameters in children with autism spectrum disorder and severe food selectivity: an electronic medical record review.
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      This risk is magnified in low-income and underresourced neighborhoods, with few local supermarkets with quality produce, the absence of safe parks or playgrounds, and an overabundance of fast-food restaurants.
      Los Angeles County Department of Public Health, Office of Health Assessment and Epidemiology. Key Indicators of Health by Service Planning Area
      Los Angeles County Department of Public Health.
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      Los Angeles County Department of Public Health, Office of Health Assessment and Epidemiology. Key Indicators of Health by Service Planning Area (2013)
      Los Angeles County Department of Public Health.
      Parents often struggle to adequately balance mealtime accommodations, nutritional preferences, and weight management with the ongoing complexities of caring for a child with ASD.
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      Stress and parents of children with autism: a review of literature.
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      Nutrition assessment and treatment of autism spectrum disorders.
      Unsurprisingly, parents of children with ASD experience an amplified level of stress, anxiety, and depression compared with parents of neurotypical children, and may require additional, tailored support that can meet their family's diverse needs.
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      Stress and parents of children with autism: a review of literature.
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      • Novak P
      • Perez J.
      Treating obesity in ASD.
      ,
      • Curtin C
      • Hubbard K
      • Anderson SE
      • Mick E
      • Must A
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      Food selectivity, mealtime behavior problems, spousal stress, and family food choices in children with and without autism spectrum disorder.
      Because caregivers play such a vital role during mealtime and can influence their children by promoting healthy choices or contributing to problematic behaviors,
      • Novak P
      • Perez J
      Nutrition assessment and treatment of autism spectrum disorders.
      inclusion of the whole family in nutritional counseling and mealtime modification strategies is essential.
      • Bonis S.
      Stress and parents of children with autism: a review of literature.
      ,
      • Sharp WG
      • Postorino V
      • McCracken CE
      • et al.
      Dietary intake, nutrient status, and growth parameters in children with autism spectrum disorder and severe food selectivity: an electronic medical record review.
      ,
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      • Eliasziw M
      • Kral TVE
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      Family-centered interventions may be an effective tool in promoting healthy lifestyle choices and slowing weight gain in children overall,
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      but their effectiveness is understudied among children with developmental disabilities, who are often excluded from pediatric weight management programs.
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      One intervention (Kids N Fitness [KNF]) has demonstrated statistically significant decreases in body mass index (BMI) in neurotypical children with obesity.
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      The family-centered curriculum, which includes nutrition education, physical activity, goal setting, and parent support,
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      has been adapted for and implemented among children of all ages and families in multiple health care and community settings with culturally and socioeconomically diverse populations.
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      Therefore, we sought to adapt the KNF curriculum to address the needs of families of children with ASD and their unique challenges in managing their child's dietary needs, mealtime behaviors, and weight status. Herein, we report our exploration and subsequent findings of the adaptation and implementation of the pediatric weight management program.

      METHODS

      Setting and Sample

      The intervention took place in a federally qualified health center, St. John's Well Child & Family Center, serving patients of all ages across Central and South Los Angeles. The health center treats > 25,000 patients with overweight or obesity, of whom 20% are children,

      St. John's. Refuge for Health: Impact Report. St. John's Well Child and Family Center; 2018. https://www.wellchild.org/2018-annual-report.pdf. Accessed September 3, 2021.

      and has a dedicated Center for Autism and Developmental Disorders (CADD). It is one of the only comprehensive programs in the region offering care to children and adolescents with developmental disabilities from low income environments, currently serving > 275 children, with a waitlist of > 100 patients. Children with autism, followed by CADD and their families, were subsequently referred to participate in the clinical pilot of Kids N Fitness for All Learning Levels (KNF4ALL). Program staff included a KNF master trainer, an onsite program coordinator, 1 promotora (community health educator), and multiple applied behavioral analysis (ABA) therapists.

      Recruitment and Enrollment

      This exploratory pilot was conceived and conducted solely as a clinical intervention without expectation for research inquiry, and all data collected from participants during participation were necessary for adapting and implementing the program curriculum for this unique population. On pilot completion, we recognized that our findings could be valuable to other practitioners in the field. The Internal Review Board for the Children's Hospital Los Angeles approved this retrospective analysis of these previously collected, deidentified program data.
      Children aged 7–12 years with a diagnosis of ASD, a BMI ≥ 85th percentile, and ability to function in group settings were considered eligible for referral to participate in the pilot. Children and their families were excluded if the child had a significant intellectual or neurodevelopmental disability or if parents were unable to commit to attending all sessions. The CADD psychologists and staff screened children and families and referred eligible families to the KNF coordinator, who contacted them via telephone to inquire about their interest in joining a new weight management pilot program specifically for families of children with ASD. Enrollees received phone call reminders 1–2 weeks before the start of the pilot program and 1 day before each class.

      Intervention

      Kids N Fitness for All Learning Levels was adapted from a variation of KNF created for children aged 3–7 years.
      • Lipton-Inga M
      • Manzanarez B
      • Vidmar AP
      • et al.
      Kids N fitness junior: outcomes of an evidence-based adapted weight Management Program for Children Ages Three-Seven Years.
      The curricula are grounded in the Ecological Systems Theory and framework
      • Bronfenbrenner U
      Ecological systems theory.
      and Health Belief Model,
      • Dreimane D
      • Safani D
      • MacKenzie M
      • et al.
      Feasibility of a hospital-based, family-centered intervention to reduce weight gain in overweight children and adolescents.
      whereas pedagogical decisions were guided by both Transformational Learning Theory and Vygotsky's Zone of Proximal Development.
      • Walker RA
      Sociocultural issues in motivation.
      Key differences between the original and adapted program can be found in Table 1. The KNF4ALL program consisted of orientation and 6 weekly, 90-minute classes attended by the whole family. Each class was structured around 4 core elements: (1) family-centered nutrition education, (2) parent support, (3) physical activity, and (4) goal setting. Table 2 summarizes the content of each class for the 4 core elements; Table 3 describes the typical timing schedule of each class.
      Table 1Comparison of the Traditional KNF Program and the KNF4ALL Adaptation
      CategoryTraditional KNFKNF4ALL Adaptations
      ParticipantsChildren aged 8-16 y with overweight/obesity

      At least 1 parent or legal guardian

      Able to participate in a group setting
      Change or deviation from the traditional KNF program
      Children aged 8-12 y with autism and overweight/obesity

      Addition to the traditional KNF program.
      Participating in the CADD clinic program
      ReferralsLocal pediatricians

      Other allied health professionals

      Self-referred
      Addition to the traditional KNF program.
      Lead psychologist

      Addition to the traditional KNF program.
      Care coordinator
      Staff and TrainingHealth educator or registered dietitian

      Volunteers

      2-d training

      KNF master trainer observations/fidelity checks
      Addition to the traditional KNF program.
      Promotora (community health worker)

      Addition to the traditional KNF program.
      Psychologist

      Addition to the traditional KNF program.
      Care coordinator

      Change or deviation from the traditional KNF program
      One-day training refresher to already trained staff

      Addition to the traditional KNF program.
      Weekly staff debrief

      Addition to the traditional KNF program.
      ABA reinforcement/teaching
      StructureWeek 0 (orientation)

      6 weekly 90-min sessions

      45 min family didactics

      45 min physical activity for kids

      45 min parent support
      Addition to the traditional KNF program.
      Follow visual agenda/schedule outline as a form of priming

      Change or deviation from the traditional KNF program
      Time flexibility variable to audience

      Change or deviation from the traditional KNF program
      Shorter family didactics

      Change or deviation from the traditional KNF program
      Increased parental nutrition education emphasis

      Addition to the traditional KNF program.
      Scheduled breaks in-between activities
      Setting and LocationsGroup classes

      Hospital, schools, summer camps, churches
      Change or deviation from the traditional KNF program
      Community clinic (conference room and demo kitchen)
      Physical ActivityGroup-based games

      Nutrition embedded messages in physical games

      Family games
      Change or deviation from the traditional KNF program
      Flexibility with physical activities on the basis of participants (individual vs group)

      Change or deviation from the traditional KNF program
      Use of arts and crafts, hands-on activities for children to continue learning topics
      Materials and ResourcesStudent binder with handouts, incentives

      Food models, posters, fresh snacks

      Gym bag: balls, jump ropes, games, music speaker
      Addition to the traditional KNF program.
      Visual agenda/schedule

      Addition to the traditional KNF program.
      Gym bag: video projector for yoga videos
      MetricsAnthropometrics (height, weight, age, body mass index, etc)

      Parent feedback survey
      Addition to the traditional KNF program.
      Behavioral intake survey (in-person or via phone by promotora)

      Addition to the traditional KNF program.
      Knowledge survey
      ABA indicates applied behavior analyst therapist; CADD, Center for Autism and Developmental Disorders; KNF, Kids N Fitness; KNF4ALL, Kids N Fitness for All Learning Levels.
      a Change or deviation from the traditional KNF program
      b Addition to the traditional KNF program.
      Table 2Kids N Fitness for All Learning Levels Program Description of Weekly Nutrition Topics, Activities, Goals, Incentives, and Snacks
      SessionFamily-Centered Nutrition EducationParent SupportPhysical ActivityGoal SettingIncentiveHealthy Snack
      • Orientation
      • •Overview of program
      • •Logistics of class
      • •Introduction to logbooks and group goal
      • •Setting realistic expectations for the program
      • •Game: ball toss/hot potato
      • •Not available
      • •Stickers
      • •Tangerines and crackers
      • Class 1Food Groups
      • •MyPlate and the food groups
      • •“Eating a ‘rainbow’ on your plate” – adding colorful vegetables to meals
      • •Introduce traffic-light food categories for health
      • •Continued overview of My Plate and food groups, traffic-light food categories
      • •Introduce the risks of obesity
      • •Craft: Create a MyPlate
      • •Games: hot potato, red-light, green-light vs red-light foods race
      • •Eat breakfast daily
      • •Athletic bag and student workbook
      • •Rainbow vegetables (colorful vegetables served with light ranch dip)
      Class 2 Portions
      • •Age-appropriate portion sizes for each food group
      • •Introduction to the food label: focus on servings and serving sizes
      • •Adapted Goldilocks and the Three Bears story to learn about eating “just the right portions”
      • •Introduction of the Hunger Scale for mindfulness and assessing satiety
      • •Discuss difficulty in making changes
      • •Provide portions and portion control tips
      • •Discuss managing behaviors of overeating
      • •Importance of exercise
      • •Learn how to use a pedometer
      • •Craft: breakfast plate maracas
      • •Story-time: The Two Bite Club to encourage variety
      • •Game: interval stations
      • •Walk as much as possible, aiming for 10,000 steps/d
      • •Pedometer
      • •Popcorn trail mix
      • •(Air-popped popcorn, whole-grain cereal, raisins)
      • Class 3
      • Fats and Real vs Processed Food
      • •How to choose snack foods that are lower in fat and calories
      • •Learning about the various types of fats
      • •Benefits of eating real foods vs processed foods
      • •Activity: drawing examples of types of fat and real and processed foods
      • •Review types of fat and cholesterol, and low-fat options
      • •Provide ideas on how to cook foods to lower fat content
      • •Review importance of fiber
      • •Learn how to calculate fiber needs
      • •Story-time: Vegetable Garden Princess to encourage vegetable intake
      • •Games: duck, duck, goose (healthy, healthy, junk), portion exercise moves, free play, yoga
      • •Eat 5 fruits and vegetables/d
      • •Jump rope
      • •Strawberries with homemade whipped cream
      • Class 4 Sugar and Hydration
      • •Recommend water instead of sugar-sweetened beverages, juice, and smoothies
      • •Active learning by matching sugar cube amounts to popular sweetened beverages
      • •Introduce the importance of water by conducting a demo of “growing a healthy dinosaur” sponge toy in water vs a sweetened beverage
      • •Identify different forms of sugar
      • •Practice food label reading for sugar content
      • •Review added sugar recommendations
      • •Practice calculating teaspoons of sugar by reading the label
      • •Review recommendations of setting limits in relation to food
      • •Discuss giving appropriate rewards
      • •Craft: color the body with water
      • •Games: bombing the cones, bear soccer, freeze tag
      • •Drink lots of water
      • •Limit sweetened beverages
      • •Limit juice to 1 glass of 100% juice/d
      • •Water bottle
      • •Fruit on a stick (different pieces of colorful fruit skewed on a stick)
      • Class 5 Healthy Shopping
      • •Demonstrate healthy shopping techniques via an in-person grocery store tour
      • •Provide tips for healthy grocery shopping
      • •Practice label reading and clarify any questions
      • •Importance of reducing screen time
      • •Parents exercise and play with their children in a group setting
      • •Games: group exercise (ie, yoga, dodge ball, Zumba)
      • •Try to limit screen time to < 2 hr/d
      • •Use the discretionary time to be more active
      • •Children's cookbook with healthy recipes
      • •“Ants on a log” (celery with peanut butter and raisins, can also use spreadable cheese)
      • Class 6 Holidays and Celebrations
      • •Describe how to eat out without overeating or eating unhealthily
      • •Describe how to enjoy special occasions and celebrations while practicing healthy eating skills
      • •Review healthy cooking techniques
      • •Review how to maintain healthy habits and how to deal with relapse
      • •Game: bombing the cones
      • •Continue to practice group goals (maintain)
      • •Raffle and graduation certificate
      • •Healthy potluck or yogurt fruit parfait
      Table 3Typical Day Structure for the Kids N Fitness for All Learning Levels Sessions
      TimeActivityDescription
      2:30–4:00 PMClass preparationStaff purchases and prepares snacks. Volunteers gather materials (handouts, balls, etc)
      4:00–4:30 PMCheck-in timeFamilies check-in and taste test snacks with parents. Staff collects data (surveys and body measures)
      4:30–4:55 PMFamily nutrition educationHealth educator (lead instructor) and promotora (secondary instructor and interpreter) facilitate class
      4:55–5:50 PMPhysical activity with childrenHealth educators and volunteers lead activities in the main room
      4:55–5:50 PMParent support sessionPromotora leads parent education and support group in a separate room
      5:50–6:00 PMClass wrap-upBrief nutrition education recap, goal setting, and kids try snacks with parents
      5:50–6:30 PMClean-upAll staff help to clean and put away materials in the storage area
      6:20–6:30 PMStaff debriefThe coordinator facilitates group discussions of each class impressions
      Each class began with a 20–30 minute parent and child joint lesson consisting of a particular nutrition focus and related strategies to support healthy eating, exercise, and overcoming barriers families of children with ASD face when making healthy lifestyle changes. Lessons were conducted simultaneously in English and Spanish because speakers of both languages were present.
      Following the education lesson, parents engaged in an hour-long parent support session that included education reinforcement and opportunities for open-ended conversation. Parents were encouraged to share their own experiences, offer useful strategies to manage child behaviors, and seek advice from KN4ALL staff for addressing mealtime challenges.
      Separately, children participated in guided physical activity tailored to children with ASD. Anticipating sensory overstimulation, children engaged in quiet and individual arts and crafts projects between group physical activities. During the arts and crafts project time, KNF4ALL staff reinforced key nutrition concepts from the education session.
      Parents and children came back together at the end of the class to discuss a weekly goal for the whole group. Both parents and children received age-appropriate logbooks to track goal progress between classes.
      Initially, core staff included an onsite program coordinator, 1 promotora, 1 ABA therapist, and 3-4 volunteers, while the KNF master trainer and CADD lead psychologist led program training. After the first cohort, an additional ABA therapist joined the program staff to help with immediate behavior management and further staff training. Program staff and volunteers completed a 2-hour training led by the KNF director and the CADD lead psychologist, who introduced the KNF curriculum and provided guidance about educating children with ASD. Training topics included an overview of each class, program activities unique to KNF4ALL, and strategies for working with children with ASD. Staff were encouraged to ask for further training and guidance throughout the pilot period, and share evidence-based practices that they felt would be a useful addition to the adapted curriculum. The ABA therapists were important in responding to immediate behavior challenges and providing staff training techniques for reinforcing behavior management. After each class, program staff debriefed and reflected on their experience delivering the program to this population and suggested modifications as needed.

      Data Collection

      To assess the adaptation and implementation of the KNF program for children with ASD and their families, outcomes of interest included family perception of benefit, family and staff perception of feasibility, and process measures related to program implementation (eg, curriculum adaptations, logistical modifications, etc). Although baseline demographic characteristics, weight status (eg, BMI), and survey questions related to nutrition knowledge, food behavior, and physical activity were completed as part of the program curriculum, the primary focus for this analysis was to provide more qualitative findings related to program adaptation. The KNF4ALL staff documented observations from each class to reinforce elements of the curriculum that resonated most for both children and parents, improve the presentation of confusing concepts, and augment specific activities requiring more meaningful engagement. The KNF coordinator tracked recruitment and retention trends, program administration logs, and documented notes of qualitative data of postsession staff debriefs. In addition, a final parent satisfaction survey solicited open-ended feedback about their impressions of the program and recommendations for improvement. All surveys were self-administered in the participant's preferred language (English/Spanish); however, several parents with low-literacy skills needed assistance and completed an interviewer-administered survey.

      RESULTS

      Over 8 months, 50 children were referred for eligibility screening and program enrollment. Of those referred, 13 (26%) attended orientation, 19 (38%) attended the first class, and 13 (26%) attended the minimum requirement of 3 classes. Of those that attended ≥ 3 classes, 100% completed all 6 class sessions. Families cited barriers of living in an urban area (eg, lack of transportation, proximity of program location) and child competing activities (eg, medical appointments, in-home behavioral therapy sessions) as preventing full participation in the program. Anthropometric measures were not consistently obtained because some participants felt uncomfortable with measurement or were overwhelmed sensorily by the environment.
      Implementation adjustments were made to meet the individual needs and comfort of the children. Several preplanned adaptations (eg, class duration, separate sessions for parent-child education, tactile teaching) were viewed favorably among participants. Similarly, participants found that the combination of short didactic lessons, leveraging arts and crafts as part of a kinesthetic learning modality, and teaching through storytelling was useful in accommodating the unique needs of children. After the first cohort, additional modifications were made to better meet program and participant needs. Weekly staff debriefs served to voice successes and challenges, provide feedback, and problem-solving. In addition, the CADD psychologist coached staff in how to address challenging behaviors, effective communication, and mandatory reporting. To address children's varying capacity for comprehension and large-group socialization, staff modified content delivery and teaching style by (1) increasing the use of visual aids and tactile activities to present nutrition topics, (2) pausing for breaks involving whole-body movement when children began to lose focus, and (3) implementing new behavior redirection strategies, such as a quiet sign, a token system to reinforce desirable behaviors, and a visual agenda supporting transitions.
      Families also expressed satisfaction with the program management, content, and delivery; selected family quotes can be found in Table 4. They appreciated the promotion of social interaction with other children with ASD as a cornerstone of the pilot, and they reported benefiting from a class structure and content specifically tailored to the needs of children with ASD. Families also valued the opportunity to ask questions and share successful experiences and approaches to increase their child's healthy food repertoire. On completing participation in the pilot, families reported their children to be more willing to try new foods, proactively added colorful foods to their plate during mealtimes, and expressed greater interest in exercise. In addition, the curriculum seemed to resonate with child participants, as documented by both staff and parents, who noted that children recalled main messages from prior weeks’ lessons. Although families enjoyed learning about nutrition during the distraction-free parent education sessions, they conversely expressed a need for specialized support to learn how to implement new knowledge outside of class sessions. Families wanted more time with program staff, additional class sessions, and individualized recommendations and mealtime strategies.
      Table 4Selected Parent Responses from the Kids N Fitness for All Learning Levels End-of-Pilot Satisfaction Survey.
      Topic EvaluatedQuestion AskedParent Comment
      Overall program impressionsWhat did you think of the content, instruction, and management of Kids N Fitness?• “Very good and I liked how it was bilingual”

      • “Very detailed, but short time to learn”

      • “I think they have a lot of knowledge of the topics and they were explained well”

      • “It is a very good program that helped me understand things that I thought I knew about  nutrition, but did not know correctly”
      Benefits of program participationWhat aspects did you enjoy the most?• “The information and how my child could interact with other children”

      • “That this program is inclusive to children with autism”

      • “That my son got so involved in it”
      Areas of improvementWhat are some aspects that we can improve on for future sessions?• “A bit more time to learn everything”

      • “Talk about exercise more and why it is important”

      • “Improve the food”
      Child behavioral changes because of interventionWhat are some changes, if any, observed in your child because of participating in the program?• “My child is communicating with me more about his food selections and he has motivation  to play and do exercise more”

      • “My child exercises more and is willing to eat more fruits”

      • “My child tries new foods now”

      • “Before eating my child will observe the food and critique it to make sure it is healthy”
      Program staff also reported satisfaction in the program, observing positive behavior changes in families throughout the program. They appreciated providing behavioral modification expertise and encouraging the introduction of new foods. Staff-recommended adaptations to program activities included fostering a calm environment when trying new foods, repeating encouraging phrases (eg, “Don't be afraid to try new foods – it could be tasty and fun!”), and increasing opportunities for children to participate in preparing snacks.

      DISCUSSION

      There is a paucity in the literature on the impact of adaptation of a healthy lifestyle curriculum to support families of children with ASD who struggle to maintain a healthy relationship with food.
      • Reichow B.
      Overview of meta-analyses on early intensive behavioral intervention for young children with autism spectrum disorders.
      ,
      • Eldevik S
      • Hastings RP
      • Hughes JC
      • Jahr E
      • Eikeseth S
      • Cross S.
      Meta-analysis of Early Intensive Behavioral Intervention for children with autism.
      The findings from this pilot provide insight into the unique challenges of caring for these families and an opportunity to share lessons learned in the implementation of such a program. Despite a small sample size, feedback from both families and program staff was encouraging and indicated the acceptability of this type of program.
      Families who engaged in the pilot program identified positive benefits for their child and the entire family. Families appreciated the group setting, which provided a safe, inclusive space to learn, share, and socialize for both parents and children. This is significant as children with ASD are often excluded from extracurricular activities, community resources, and opportunities for socializing.
      • Devenish BD
      • Sivaratnam C
      • Lindor E
      • et al.
      A brief report: community supportiveness may facilitate participation of children with autism spectrum disorder in their community and reduce feelings of isolation in their caregivers.
      ,
      • Egilson ST
      • Jakobsdóttir G
      • Ólafsson K
      • Leósdóttir T.
      Community participation and environment of children with and without autism spectrum disorder: parent perspectives.
      Equally important, parents had a dedicated place to speak candidly about their struggles by exchanging experiences and suggestions with other parents. The community support and sense of belonging that a program like this engenders may be an additional benefit to families experiencing social and environmental isolation because of the challenges in caring for a child with ASD.
      • Devenish BD
      • Sivaratnam C
      • Lindor E
      • et al.
      A brief report: community supportiveness may facilitate participation of children with autism spectrum disorder in their community and reduce feelings of isolation in their caregivers.
      Parents’ perceived improvement in their child's health and dietary habits was viewed as a positive outcome given that children with ASD are often rigid and less likely to alter established behaviors.
      • Novak P
      • Perez J.
      Treating obesity in ASD.
      ,
      • Bandini LG
      • Curtin C
      • Phillips S
      • Anderson SE
      • Maslin M
      • Must A.
      Changes in food selectivity in children with autism spectrum disorder.
      Interestingly, despite 6 families dropping out after the first class, the remaining 13 attended all 6 classes, suggesting that families found the classes engaging and worthwhile. Perhaps this positive dose-response can be further enhanced by integrating experiential learning activities, such as taste testing and food preparation, as a mechanism to further promote lifestyle change in a safe, fun environment.
      • Makrygianni MK
      • Reed P.
      A meta-analytic review of the effectiveness of behavioural early intervention programs for children with autistic Spectrum Disorders.
      Increasing both the professional diversity and number of program staff was integral to the adaptation process. Principles of ABA have often been used as part of multidisciplinary models and evidence-based interventions in the management of children with autism.
      • Potvin MC
      • Prelock PA
      • Savard L.
      Supporting children with autism and their families: a culturally responsive family-driven interprofessional process.
      ,
      • Hyman SL
      • Levy SE
      • Myers SM.
      Council on Children with Disabilities Section on Developmental and Behavioral Pediatrics. Identification, evaluation, and management of children with autism spectrum disorder.
      In this pilot, an additional ABA staff with expertise in promoting positive behavior was valuable in tailoring curriculum modifications. Their expertise allowed for specific, nuanced modifications to be implemented quickly because of the flexibility they were given to introduce ad hoc teaching and curriculum changes. These changes addressed the unique learning needs of individual children, increasing participant engagement without compromising behavior management.
      As with any program adaptation, certain structural elements of the KNF4ALL pilot were unchanged from the existing KNF program. Specifically, the data collection methodology remained intact and ultimately posed significant challenges during the pilot. Although anthropometric data obtained in a group setting was not an issue for the original KNF program, body measurements collected in this manner for KNF4ALL were often difficult for children with ASD because of room overstimulation, heightened sensitivity to touch, cognitive rigidity, and ability to stand still. Similarly, given the varied literacy and developmental levels of program participants, assessing child nutrition knowledge and preferences was equally challenging; relying on parent knowledge and perceptions of their child as a proxy proved advantageous and troublesome. Although data were more readily available and detailed, a certain degree of parental response bias is likely. Finding ways to obtain participant data in a quiet environment familiar to the child may ease anxiety and improve the quality of all data collected.
      • Cridland EK
      • Jones SC
      • Magee CA
      • Caputi P.
      Family-focused autism spectrum disorder research: a review of the utility of family systems approaches.
      ,
      • Cridland EK
      • Jones SC
      • Caputi P
      • Magee CA
      Qualitative research with families living with autism spectrum disorder: recommendations for conducting semistructured interviews.
      ,
      • Kylliäinen A
      • Jones EJH
      • Gomot M
      • Warreyn P
      • Falck-Ytter T.
      Practical guidelines for studying young children with autism spectrum disorder in psychophysiological experiments.
      The limitations of this pilot are varied given it was conducted among a small sample of participants from an urban community health center that provides support to families of children with ASD, and the results of this adaptation should be appropriately contextualized. Efforts to mitigate roadblocks to regular attendance might be considered to increase family participation, including providing programming on weekends, bringing programming closer to participants’ homes and in multiple locations, and offering transportation assistance or virtual sessions.
      • Tint A
      • Maughan AL
      • Weiss JA.
      Community participation of youth with intellectual disability and autism spectrum disorder.
      ,
      • Wild CEK
      • O'Sullivan NA
      • Lee AC
      • et al.
      Survey of barriers and facilitators to engagement in a multidisciplinary healthy lifestyles program for children.
      The familiarity of the KNF curriculum among program facilitators may have skewed findings related to the operational implementation of curriculum adaptations. As such, extrapolation of findings and formal adaptation of program modifications described herein may not be feasible without appropriate and existing resources in place. However, in lieu of formal training in and familiarity with the existing KNF curriculum, those trained in other family-based programs or specialized behavior interventions, such as ABA therapy, may provide commensurate guidance to allow for sufficient replication of the adaptations of this pilot. In addition, the short-term nature of this pilot program may not lend itself to providing sufficient time to meet the highly individualized feeding needs of some children with ASD, which can require ongoing one-to-one therapy for several months.
      • Sharp WG
      • Burrell TL
      • Berry RC
      • et al.
      The autism managing eating aversions and limited variety plan vs parent education: a randomized clinical trial.
      Furthermore, given only about a quarter of all referred participants and their families attended ≥ 3 classes, with just > 10% of enrolled participants providing complete baseline and follow-up data, the perceived positive impact of this program may shift with improved participant retention and data quality.

      IMPLICATIONS FOR RESEARCH AND PRACTICE

      Despite these limitations, results from this pilot suggest the benefits of group-based weight management programming for children with ASD. Children with developmental disabilities, such as ASD, are often excluded from group education settings and intervention-based research. Research that explores new program models and how best to adapt programs for this population can help fill the gap in the literature and add to existing intervention therapies.
      • Fletcher-Watson S
      • Larsen K
      • Salomone E
      Members of the CEWG. What do parents of children with autism expect from participation in research? A community survey about early autism studies.
      Pilot programs like KNF4ALL may strengthen our understanding of best practices in weight management and lifestyle change, help pave the way for future research that is inclusive of this unique population, and bring equity to those in low-income communities.
      • Buro A
      • Strange M
      • Hasan S
      • Gray H
      Preliminary efficacy of a virtual nutrition intervention for adolescents with autism spectrum disorder.
      • Gallo S
      • Jones MT
      • Doig AC
      • et al.
      Feasibility of a multidisciplinary and culturally adapted pediatric weight managementprogram for latino families: results from the Vidas Activas y Familias Saludables pilot study.
      • Espinoza JC
      • Deavenport-Saman A
      • Solomon O
      • et al.
      Not just at school: inclusion of children with autism spectrum disorder in a weight management program in a community pediatric setting.
      • Hinckson EA
      • Dickinson A
      • Water T
      • Sands M
      • Penman L.
      Physical activity, dietary habits and overall health in overweight and obese children and youth with intellectual disability or autism.
      Future programs seeking to adapt the KNF curriculum or similar programs for children with ASD might consider beginning the cohort with parent focus groups to inform the development of a tailored curriculum that both addresses major concerns related to child feeding and mealtime behaviors and support their child's unique social skill levels. Similarly, it would be beneficial to have early multidisciplinary collaboration with subject matter experts to refine the curriculum and embed specific techniques for greater impact. Possible assessment tools used to evaluate programmatic success might encompass whole family domains of nutrition, behavior, mental health, and lifestyle change.
      The increasing prevalence of ASD and childhood obesity merits innovative interventions involving the whole family. Family-based community programs that address problematic mealtime behaviors and provide family-centered nutrition education may prove an important adjunct or alternative to more time and resource-intensive one-on-one interventions, such as traditional feeding therapies. As children with ASD are often excluded from traditional learning settings, findings from this pilot can contribute to the development of evidence-based practices of community-based nutrition interventions for children with ASD and their families.

      ACKNOWLEDGMENTS

      This project was supported by a grant from LA Care Health Plan to support projects that strengthen community health and fill gaps in health coverage for individuals with low income in Los Angeles County. This manuscript was supported by the Children's Hospital of Los Angeles Institute for Nursing and Interprofessional Research. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Institute for Nursing and Interprofessional Research.

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