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Weight Management in Primary Care for Children With Autism: Expert Recommendations Carol Curtin, PhD, a,b Susan L. Hyman, MD, a,c Diane D. Boas, MS, a,d Sandra Hassink, MD, a,e Sarabeth Broder-Fingert, MD, a,f Lauren T. Ptomey, PhD, a,g Meredith Dreyer Gillette, PhD, a,h Richard K. Fleming, PhD, a,i Aviva Must, PhD, a,j Linda G. Bandini, PhD a,b,k abstract Research suggests that the prevalence of obesity in children with autism spectrum disorder (ASD) is higher than in typically developing children. The US Preventive Services Task Force and the American Academy of Pediatrics (AAP) have endorsed screening children for overweight and obesity as part of the standard of care for physicians. However, the pediatric provider community has been inadequately prepared to address this issue in children with ASD. The Healthy Weight Research Network, a national research network of pediatric obesity and autism experts funded by the US Health Resources and Service Administration Maternal and Child Health Bureau, developed recommendations for managing overweight and obesity in children with ASD, which include adaptations to the AAPs 2007 guidance. These recommendations were developed from extant scientic evidence in children with ASD, and when evidence was unavailable, consensus was established on the basis of clinical experience. It should be noted that these recommendations do not reect ofcial AAP policy. Many of the AAP recommendations remain appropriate for primary care practitioners to implement with their patients with ASD; however, the signicant challenges experienced by this population in both dietary and physical activity domains, as well as the stress experienced by their families, require adaptations and modications for both preventive and intervention efforts. These recommendations can assist pediatric providers in providing tailored guidance on weight management to children with ASD and their families. a Healthy Weight Research Network, University of Massachusetts Medical School, Worcester, Massachusetts; b Eunice Kennedy Shriver Center, University of Massachusetts Medical School, Worcester, Massachusetts; c University of Rochester Medical Center, Rochester, New York; d The Barbara Bush Childrens Hospital, Maine Medical Center, Portland, Maine; e Institute for Healthy Childhood Weight, American Academy of Pediatrics, Itasca, Illinois; f Boston Medical Center and School of Medicine, Boston University, Boston, Massachusetts; g University of Kansas Medical Center, Kansas City, Kansas; h Childrens Mercy Kansas City and School of Medicine, University of MissouriKansas City, Kansas City, Missouri; i University of Massachusetts Boston, Boston, Massachusetts; j School of Medicine, Tufts University, Boston, Massachusetts; and k Sargent College of Health and Rehabilitation Sciences, Boston University, Boston, Massachusetts Drs Curtin, Hyman, Hassink, Broder-Fingert, Ptomey, Gillette, Fleming, Must, and Bandini and Ms Boas wrote the manuscript as part of a subcommittee of the Healthy Weight Research Network; and all the authors conceptualized the approach to and elements of this review and recommendations, contributed content to the initial manuscript, reviewed and revised manuscript drafts, approved the nal manuscript as submitted, and agree to be accountable for all aspects of the work. DOI: https://doi.org/10.1542/peds.2019-1895P Accepted for publication Jan 27, 2020 Address correspondence to Carol Curtin, PhD, Eunice Kennedy Shriver Center, University of Massachusetts Medical School, 55 Lake Ave North, Worcester, MA 01655. E-mail: [email protected] PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2020 by the American Academy of Pediatrics FINANCIAL DISCLOSURE: The authors have indicated they have no nancial relationships relevant to this article to disclose. FUNDING: Funded by the Healthy Weight Research Network, Health Resources and Services Administration, and Maternal and Child Health Bureau (UA3MC25735). POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conicts of interest to disclose. SUPPLEMENT ARTICLE PEDIATRICS Volume 145, number s1, April 2020:e20191895P by guest on May 18, 2020 www.aappublications.org/news Downloaded from

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Page 1: Weight Management in Primary Care for Children With Autism: … · weight management in children and youth with ASD in primary care. At present, no evidence-based treatments for or

Weight Management in Primary Carefor Children With Autism:Expert RecommendationsCarol Curtin, PhD,a,b Susan L. Hyman, MD,a,c Diane D. Boas, MS,a,d Sandra Hassink, MD,a,e Sarabeth Broder-Fingert, MD,a,f

Lauren T. Ptomey, PhD,a,g Meredith Dreyer Gillette, PhD,a,h Richard K. Fleming, PhD,a,i Aviva Must, PhD,a,j Linda G. Bandini, PhDa,b,k

abstract Research suggests that the prevalence of obesity in children with autism spectrum disorder(ASD) is higher than in typically developing children. The US Preventive Services Task Forceand the American Academy of Pediatrics (AAP) have endorsed screening children foroverweight and obesity as part of the standard of care for physicians. However, the pediatricprovider community has been inadequately prepared to address this issue in children withASD. The Healthy Weight Research Network, a national research network of pediatric obesityand autism experts funded by the US Health Resources and Service Administration Maternaland Child Health Bureau, developed recommendations for managing overweight and obesityin children with ASD, which include adaptations to the AAP’s 2007 guidance. Theserecommendations were developed from extant scientific evidence in children with ASD, andwhen evidence was unavailable, consensus was established on the basis of clinical experience.It should be noted that these recommendations do not reflect official AAP policy. Many of theAAP recommendations remain appropriate for primary care practitioners to implement withtheir patients with ASD; however, the significant challenges experienced by this population inboth dietary and physical activity domains, as well as the stress experienced by their families,require adaptations and modifications for both preventive and intervention efforts. Theserecommendations can assist pediatric providers in providing tailored guidance on weightmanagement to children with ASD and their families.

aHealthy Weight Research Network, University of Massachusetts Medical School, Worcester, Massachusetts; bEunice Kennedy Shriver Center, University of Massachusetts Medical School,Worcester, Massachusetts; cUniversity of Rochester Medical Center, Rochester, New York; dThe Barbara Bush Children’s Hospital, Maine Medical Center, Portland, Maine; eInstitute for HealthyChildhood Weight, American Academy of Pediatrics, Itasca, Illinois; fBoston Medical Center and School of Medicine, Boston University, Boston, Massachusetts; gUniversity of Kansas MedicalCenter, Kansas City, Kansas; hChildren’s Mercy Kansas City and School of Medicine, University of Missouri–Kansas City, Kansas City, Missouri; iUniversity of Massachusetts Boston, Boston,Massachusetts; jSchool of Medicine, Tufts University, Boston, Massachusetts; and kSargent College of Health and Rehabilitation Sciences, Boston University, Boston, Massachusetts

Drs Curtin, Hyman, Hassink, Broder-Fingert, Ptomey, Gillette, Fleming, Must, and Bandini and Ms Boas wrote the manuscript as part of a subcommittee of the HealthyWeight Research Network; and all the authors conceptualized the approach to and elements of this review and recommendations, contributed content to the initialmanuscript, reviewed and revised manuscript drafts, approved the final manuscript as submitted, and agree to be accountable for all aspects of the work.

DOI: https://doi.org/10.1542/peds.2019-1895P

Accepted for publication Jan 27, 2020

Address correspondence to Carol Curtin, PhD, Eunice Kennedy Shriver Center, University of Massachusetts Medical School, 55 Lake Ave North, Worcester, MA 01655.E-mail: [email protected]

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2020 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

FUNDING: Funded by the Healthy Weight Research Network, Health Resources and Services Administration, and Maternal and Child Health Bureau (UA3MC25735).

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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Evidence from clinical and nationallyrepresentative data suggests thatchildren with autism spectrumdisorder (ASD) have higher rates ofobesity than typically developing(TD) children.1–10 Evidence existsthat elevated weight status inchildren with ASD begins in earlychildhood1,3 and persists throughadolescence.4 Childhood obesityincreases the risk for chronic diseasessuch as diabetes, cardiovasculardisease, and certain cancers inadulthood.11Adults with ASD havebeen found to have higher rates ofthese conditions, so attention toobesity prevention and treatment inchildhood has important implicationsfor the future health of thispopulation.12,13

Several putative risk factors maycontribute to overweight and/orobesity in children with ASD. Anestimated 50% to 90% of childrenwith ASD have feeding problems,including selective eating patterns,rituals, food refusal, and limited foodrepertoire,14,15 which have beenfound to persist beyond earlychildhood.16,17 Although therelationship between food selectivityand obesity has not yet beenestablished empirically,18 examiningindividual eating patterns in childrenwith ASD for low fruit and vegetableintake15 and high intake of sugar-sweetened beverages and snacks19 isimportant for nutritional guidance.

Evidence also suggests that childrenwith ASD engage in less physicalactivity compared with their TDpeers.20–23 These children frequentlyhave motor skill difficulties, includingunevenness or delays in achievingmotor milestones, low muscle tone,and postural instability,24–26 whichcan adversely affect endurance,balance, and motor planning. Parentsof children with ASD have reportedseveral barriers to physical activityfor their children, including socialskill difficulties, dysregulatedbehavior, rejection by TD peers, andlack of skill and/or willingness in

adults to provide accommodations.27

Research has also documented thatchildren with ASD engage in moresedentary behavior than their TDcounterparts, which is largelyattributable to increased screentime.28–31

Children and adults with ASD areoften prescribed second-generationantipsychotic (SGA) agents forbehavioral problems, irritability, andself-injury. These agents cancontribute to rapid weight gain andelevated weight status and, in somecases, metabolic syndrome.32

Exposure to atypical antipsychoticsfor at least 3 months has been foundto increase risk of diabetes later inlife.33

The growing literature base thatdocuments the increased risk ofobesity in children and youth withASD constitutes a public healthimperative for clinicians and policymakers. In particular, primary careproviders have a key role to play inboth prevention and interventionefforts. Research suggests thatprimary care providers would benefitfrom specific recommendations forobesity prevention and managementin children with ASD. Walls et al34

surveyed 327 general pediatriciansusing fictional clinical vignettes ofchildren with ASD or dyslexia thatwere randomly assigned, which werefollowed by questions aboutattitudes, practices, self-efficacy, andbarriers to obesity management forchildren with ASD. Most respondents(62%) believed that pediatriciansshould take primary responsibility formanaging overweight and/or obesityin children with ASD, yet only 5.5%felt that pediatricians possessed theappropriate training to do so.Respondents who received the ASDvignette were less likely to rankdiscussion around screen time or thechild’s diet as a top priority. Thosewho received the ASD vignette werealso less likely to assess the child’saccess to healthy food itemscompared with those who received

the non-ASD vignette. Pediatriciansreported several barriers to managingoverweight and/or obesity in childrenwith ASD; the barriers mostfrequently reported were lack of timeand the perception that the child’sweight was not a concern. Otherbarriers included lack of supportand/or referral services for weightmanagement and lack of effectivetreatments or therapies for obesity inchildren in general. Few pediatricianscited a lack of knowledge or skill forweight management, suggesting thatthey feel they possess the knowledgeand skills but may need additionalinformation and support toimplement routine and specializedstrategies. Pediatricians reported thatobesity is more challenging tomanage in children with ASD than TDchildren and tend to refer todietitians or developmental-behavioral pediatricians (DBPs) formanagement. However, it appearsthat DBPs may be unlikely to identifyobesity in children with ASD. Inanother study, Walls et al35 used datafrom the medical records of .4000children with ASD from 3 clinicsassociated with the DevelopmentalBehavioral Pediatrics ResearchNetwork. They found that althougha substantial proportion of childrenmet criteria for overweight or obesity,relatively few received a documentedInternational Classification ofDiseases, Ninth Revision code fora weight-related concern. These gapsin pediatric practice point to the needfor tailored strategies that providerscan employ to address obesity inchildren with ASD.

This set of recommendations wasdeveloped to provide guidance forweight management in children andyouth with ASD in primary care. Atpresent, no evidence-basedtreatments for or approaches toweight management in primary carefor this population have beendeveloped.36 However, pediatricproviders have indicated a need forguidance to address this issue.34 The

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American Academy of Pediatrics(AAP) 2007 Expert CommitteeRecommendations on ChildhoodObesity37,38 provide a comprehensiveapproach for managing childhoodobesity. However, they requiremodification or expansion to beimplemented successfully in childrenwith ASD, which this set ofrecommendations offers, althoughthis does not represent official AAPpolicy.

METHODS

The Healthy Weight ResearchNetwork (HWRN) (https://HWRN.org) was established in 2013 withfunding from the Health Resourcesand Services Administration Maternaland Child Health Bureau. The HWRNcomprises an interdisciplinary groupof clinical investigators and expertswho conduct research on and/orprovide obesity treatment forchildren with ASD and otherintellectual and/or developmentaldisabilities (I/DD). The HWRN iscodirected by researchers at theUniversity of Massachusetts MedicalSchool and Tufts University School ofMedicine in collaboration with 14core members throughout the UnitedStates.

An HWRN workgroup developed thisset of recommendations and included2 pediatricians, 1 DBP, 2psychologists, 2 registered dietitians,a clinical social worker who isalso a clinical health researcher,and a parent of an individual withI/DD who is also an obesity healtheducator for individuals withdisabilities.

The recommendations weredeveloped via a methodical,deliberative process. Workgroupmembers participated in monthlyconference calls between October2016 and November 2018. Theyreviewed relevant extant researchthat focused on obesity in childrenwith ASD, co-occurring conditions inASD that were also obesity risk

factors, and best practices inmanaging obesity in TD children.Clinical consensus was achievediteratively; the workgroup heldextensive discussions focused ondeveloping guidance for pediatricproviders in light of the lack ofevidence-based weight managementor weight loss approaches in primarycare for this population. Theworkgroup concluded that makingmodifications to and expanding onthe comprehensive AAP 2007 ExpertCommittee Recommendations onChildhood Obesity37 would be themost appropriate approach. Feedbackderived from a series of interviewsand focus groups with primary carepediatric providers also informedthe development of theserecommendations (M. Walls, ZK.Zuckerman, S.B.-F., unpublisheddata).

Multiple drafts of therecommendations were circulated toall workgroup members for feedback,and changes were discussed duringphone calls. Members’ feedback andcontent contributions wereincorporated into subsequent writtendrafts and again reviewed by themembers. All workgroup memberssignified their agreement with andconsensus on the final version of thearticle.

RECOMMENDATIONS: SCREENING ANDASSESSMENT

Recommendation 1: Children WithASD Should Be Screened Routinelyfor Overweight and Obesity

The US Preventive Services TaskForce39 recommends that providersscreen for obesity in children 6 yearsand older and either offer or referfor comprehensive, intensivebehavioral intervention to promoteimprovements in weight status.Universal calculation andclassification of BMI is recommendedfor all well-child visits.40,41 Althoughchildren ,6 years old were notincluded in these recommendations,

they are an important group forobesity prevention and earlytreatment,42 as are children with ASD.Some research has shown thatelevated weight status amongchildren with ASD begins as early asthe preschool years1,3; thus, childrenwith ASD should be screenedroutinely for overweight and obesitystarting at 2 years of age.

BMI is correlated with more directmeasures of body fat, and BMIclassification serves as the first stepin assessment of obesity.39–41 Forchildren in the United States, sex-specific BMI-for-age percentiles arecalculated relative to the 2000 USCenters for Disease Control andPrevention growth reference.43 ChildBMI can then be classified asunderweight (BMI ,5th percentile),healthy weight (BMI fifth percentileto ,85th percentile), overweight(BMI 85% to ,95%), or obese (BMI$95%). The American HeartAssociation defines severe obesity asa BMI $120% of the age- and sex-specific 95th percentile or anabsolute BMI $35, whichever islower.44

Recommendation 2: Weight-RelatedConcerns Should Be Discussed WithParents and Children as AppropriateGiven Child Age, DevelopmentalLevel, and Readiness for Discussion

Providers might assume that thestress and challenges of supportinga child with ASD would reduceparental concern for child weightstatus. However, recent researchsuggests that this may not be the case.Using data from the 2016 NationalSurvey of Children’s Health, we foundthat parents of children with ASD andobesity were more concerned thanparents of TD children about theirchildren’s weight status.45 Thus,providers are encouraged to raisethe topic of obesity prevention andintervention with families of childrenand youth with ASD.

Weight bias, teasing, and bullying areoften directed at children with

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obesity and can affect their emotional,psychological, and social well-beingand contribute to additional weightgain. Providers must be positive rolemodels, use nonjudgmental language,and create a nonstigmatizing, safe,and welcoming office environment. Arecent small qualitative study byJachyra et al46 highlighted thenegative experiences of children withASD about weight-related discussionswith their health care providers.They described feelings of anger,frustration, and fear and reportedexperiencing weight stigma in clinicalvisits, including lectures andadmonishments by providers. Mosttroubling was that weight-relatedissues became a repetitive and/orrestricted interest for several childrenwho reported body image concernsregarding their elevated weightstatus. The authors recommendedtaking a positive, health-orientedapproach.

Providers should assess the child’swillingness to have weight-relateddiscussions and provide realistic,concrete examples of short-termgoals and strategies related to eatingand physical activity. Motivationalinterviewing, which has beenshown to be effective for weightmanagement in both adults andchildren,47–49 may be useful inchildren with ASD. Adaptations tomotivational interviewing techniqueshave been suggested by Frielink andEmbregts,50 which have applicabilityto children with ASD. Suchadaptations include using simple,concrete, and clear languageexpressed in short sentences.Providers should ask only onequestion at a time and confirm thatthe patient and provider share thesame understanding. Providers canassist patients in answering questionsif they do not appear to comprehendquestions and should use both verbaland nonverbal means for providingsupport and encouragement. Patientsbenefit from having the providerprovide frequent summaries of what

is being discussed, and providers canalso support patients in providingtheir own summary of the discussionto ensure clarity. Providers arereminded that patients may havedifficulty imagining hypotheticalsituations, and thus, taking smallsteps toward behavior change isessential. Providers may also elect towork directly with parents, especiallyif the children have cognitive orbehavioral limitations that mightpreclude their meaningfulinvolvement in discussions or if thereare other reasons why parent-onlycounseling may be preferable or morefeasible. Matheson et al51 recentlyshowed that parents of youngchildren with ASD could be engagedin implementing behavioral weightloss strategies for their children withsuccessful results. Table 1 containsstrategies for providers to encouragefamilies, schools, and other providersto implement that help in supportingchildren with ASD and their familiesin adopting healthy lifestyles.

Including weight-related topics aspart of each visit can facilitateconsistency and avoid surprises orunexpected conversations that canbe difficult for children with ASD.63

The 2007 AAP ExpertRecommendations37 contain specificsuggestions for communicating withchildren and families that are alsoappropriate for families of childrenwith ASD. This includes askingquestions in a nonjudgmental mannerand engaging in reflective listeningwith children and parents to elicittheir concerns, beliefs, and values.This approach can help createa supportive forum for discussion andproblem-solving and is less likely toprompt defensiveness on the part ofchildren and families.

Recommendation 3: Conducta Comprehensive Assessment ofObesity in Children and Youth WithASD Who Present With an ElevatedBMI

The clinical evaluation of overweightand/or obesity in a child with ASD

should include the same elements ofthe history and physical examinationused for TD children. The review ofsystems should explore commonmedical conditions that may alsoincrease obesity risk, including sleepproblems, gastrointestinal symptoms,food selectivity, and neurologicdisorders. The history should explorethe child’s growth trajectory and thepresence of constitutional symptomsthat might suggest thyroiddysfunction or depression. Familyfactors should be explored, includingopportunities for physical activity,mealtime routines, and foods presentin the home.

Physical Examination

The physical examination should beinformed by the history and includepulse; blood pressure; palpation ofthe thyroid and abdomen; cardiac andpulmonary examination; evaluation ofthe skin (including infection inintertriginous regions and acanthosisnigricans), hips, and knees; andneurologic findings that may limitphysical activity.

Growth Parameters

Height, weight, pulse, and bloodpressure should be measured andBMI should be calculated at all healthmaintenance and acute visits.Children with ASD may be intolerantof measurement, and fear or anxietymay preclude obtaining these data.Routine exposure to andreinforcement of the examinationcomponents, use of visual schedules,and accommodating thecommunication and sensory needs ofthe child can facilitate familiarity andthus make the visit easier.

Laboratory Testing

The laboratory workup andmonitoring of a child with ASD andobesity is no different from that of TDchildren. If symptoms suggest a childmight have hypothyroidism, thyroid-stimulating hormone should bemeasured. Blood glucose, lipids, and

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liver enzymes should be measured inall children with obesity.37,38,70–72

Genetic testing may be recommendedif the etiology is unknown because

ASD may be associated with geneticdisorders that may impact growth.Children with general overgrowth,macrocephaly, intellectual disability,or dysmorphic features should be

considered for genetic consultationand testing. Children with ASD mayhave genetic findings associated withlarger heads (eg, mutations in thephosphatase and tensin homolog

TABLE 1 Strategies for Supporting Children With ASD and Their Families To Adopt Health-Promoting Behaviors

Promoting Healthy Eating Promoting Physical Activity Limiting Screen Time

At home At home At homeEncourage families to: Encourage families to: Encourage families to:Involve children in planning meals, food

shopping, and cooking if feasible and ifthey are of interest to the child.

Consider ways to be active as a family (eg,dance to music, take walks and/orhikes, or play outside games).

Limit the use of screen time as a reward or asa break from caregiving by scheduling it andsetting time limits.

Plan meals to introduce new foods. Include atleast one food that the child likes in everymeal.

If appropriate and if perceived asenjoyable, involve the child in physicalchores, such as raking leaves orsweeping.

Limit Internet access.

Offer healthy snacks.At school53,58–62

Model healthy behavior; plan and/or take shortmovement breaks together to reduce sedentarytime.

Portion snacks in advance.Explore ways to increase physical activity

during the school day (eg, frequentmovement breaks and includingmovement in academics).53,58–62

Keep all screens out of the child’s bedroom.Act as role models in eating healthy foods.

Recommend that a physical educationteacher be included on the child’s IEPteam.

At schoolOffer water in lieu of sugar-sweetened

beverages. Try flavoring water with fruitand herbs.

Advocate for the inclusion of physical activitygoals in the child’s IEP.

Request that the child’s teacher provide individualizedsensory-motor breaks and/or physical activity tooffset instructional time spent using screen-basedmedia.Use positive language when talking about

food and the child’s eating habits.

Consider providing physical education incommunity-based settings as part ofsecondary special education transitionprogramming.

With in-home support staffIncrease structure around mealtimes

Request adaptive physical education servicesif a child is not successful in the generalphysical education program.

Encourage parents to ask staff to be active instead ofwatching television and/or looking at screensduring their shift.

Display a schedule for meals and snack times.Adjust the schedule if medication impacts thechild’s appetite.

Ask about semistructured or structuredrecess with staff supervision.62

Remove distractions, such as televisions andphones when eating.

Be sure that recess is not limited or takenaway as a punishment.

Additional resources

Offer choices to give the child some control overwhat they eat.

With in-home support staff

The Let’s Go! toolkit for children with intellectual anddevelopmental disabilities: https://mainehealth.org/lets-go/childrens-program/developmental-disabilities

Introduce the child to new foods by letting themfirst see, smell, then touch and eventuallytaste it.

Encourage parents to ask staff to be activeand positive role models.

Fostering positive wt-related conversations63(Hollandand Bloorview Kids Rehabilitation Hospital) https://www.hollandbloorview.ca/sites/default/files/2019-10/WeightRelatedConversationsKTCasebook.pdfConsider modifying the texture of foods to align

with the child’s texture preferences.62,64–66

Include physical activity goals in Medicaid-reimbursed individual treatment plans.

Autism Speaks ATN/AIR-P. A Parent’s Guide to ExploringFeeding Behavior in Autism https://www.autismspeaks.org/tool-kit/atnair-p-guide-exploring-feeding-behavior-autism,67

Avoid using food as a reward.

Chazin and Ledford. Reinforcement on the playground.Evidence-based instructional practices for youngchildren with autism and other disabilities. http://vkc.mc.vanderbilt.edu/ebip/reinforcement-on-the-playground.68

At child care, preschool, or school

Common sense media rates games, videos, and appson the basis of their educational value andsuitability for children at different ages (www.commonsensemedia.org)

Monitor food intake; for example, ensure thatthe child is not eating breakfast at home thenagain at school.69

AAP’s obesity algorithm (http://ohioaap.org/wp-content/uploads/2016/09/1-Algorithm.pdf)

Ask for preference assessments to identify thechild’s preferred activities or items. These canbe used as potential nonedible reinforcers topromote the desired behavior(s).

AAP Institute for Healthy Childhood Wt (https://ihcw.aap.org)

Use physical activity as a reward (dancing,outdoor time, or active video games).

Review monthly school menus. Try preorderingschool meals if available.

Include healthy eating goals and alternatives tofood rewards in IEPs and Transition Plans.

With in-home support staffAsk staff to model healthy eating behaviors.Ask staff to put their soda and/or fast food in

unlabeled containers (eg, put a soda ina thermos or water bottle so children are notaware of them).

Help staff find alternatives to using food asa reward.

Include healthy eating goals in Medicaid-reimbursed individual treatment plans.

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gene and Fragile X syndrome) thatmay be associated with increased BMIat younger ages.73 Overgrowthsyndromes may be associated withI/DD, including ASD. History andexamination are important indetermining if additional workup isindicated. The AAP recommendsconsideration of genetic causes ofASD independent of obesity.

Recommendation 4: Include anAssessment of Health Conditions andRisk Factors That Are AssociatedWith Both ASD and Obesity, IncludingEating and Physical Activity Patterns

ASD is associated with a number ofhealth conditions that haveindependent associations withobesity. Ongoing monitoring of andintervention for these conditions iscalled for and is important for obesityprevention (Table 2).

Sleep Disorders

Sleep problems are associated withobesity in the general population ofchildren. Inadequate sleep increasesthe risk of insulin resistance,a sedentary lifestyle, and poor dietarypatterns, including late-nightsnacking.75 Obesity also increases therisk of sleep apnea. Difficulties fallingand staying asleep may be seen in.70% of children with ASD.76 Thecause of delayed sleep onset in ASDmay be similar to the causes in otherchildren: lack of bedtime routines,caffeinated beverages, inability tofall asleep without a parent, amismatch between parental bedtimeexpectations and age, and playingvideo games at bedtime. Night wakingmay be associated with snoring and/or obstructive sleep apnea, habitualwaking induced and/or reinforced byfeeding at bedtime, and parasomniassuch as sleep walking. Children withASD may have additional reasons forsleep problems, including sensoryoverresponsiveness, abnormalities inmelatonin metabolism, and less timein rapid eye movement sleep.77

Neurotransmitters implicated inthe etiology of ASD, such as

g-aminobutyric acid and serotonin,are also involved in sleep onset andmaintenance.77 Sleep problems maybe associated with medications usedfor other symptoms; for example,selective serotonin reuptakeinhibitors may lead to sleepfragmentation. Children with ASD aremore likely than other children tohave surgery for sleep-disorderedbreathing. It has been reported thatsocial communication, attention, andrepetitive behavior may improve aftertonsillectomy.78

Gastrointestinal Problems

Children with ASD can have lactoseintolerance, gastroesophageal refluxdisease, and functional constipationresulting in gastrointestinalsymptoms similar to other children.Many hypotheses exist as to whyindividuals with ASD might have anincreased prevalence ofgastrointestinal symptoms, includingbacterial dysbiosis, altered reactivityto stress,79 altered intestinal barrierfunction, impaired disaccharidaseactivity, and inflammation of the gut.Evaluation of children with ASD withgastrointestinal symptoms revealssimilar findings to those of childrenwithout ASD.80

The data regarding an associationbetween constipation and obesity areconflicting.81 Children with ASD haveless opportunity for physical activity,which may contribute to slowercolonic transit time. Food selectivityin children with ASD has been shownto be associated with less fruit andvegetable consumption,15 which mayresult in lower-than-recommendedfiber consumption.82,83 However, theassociation between fiber intake andstool frequency and consistencyremains unclear.

Neurologic Disorders

Neurologic disorders are common inchildren with ASD. The prevalence ofseizures in ASD ranges between 6%and 27% and varies according to age,sex, and the presence of an

intellectual disability.84–86 Manyanticonvulsant medications areassociated with obesity,87 which maybe a side effect and/or result ofmedication-induced psychomotorslowing causing lower energyexpenditure.

Psychiatric and/or Behavioral HealthDisorders and PsychotropicMedications

Children with ASD should bescreened for attention-deficit/hyperactivity disorder (ADHD),anxiety, and depression, and manyresources now exist for providers toconduct such assessments.74,88,89

ADHD is seen in 41% to 78% ofchildren with ASD,74 and anxiety isreported in up to 40% of childrenwith ASD.88 ADHD90 and anxiety88

are associated with sleep problems,functional gastrointestinal problems,learning challenges, and obesity.91–93

By adolescence, almost half of youthwith ASD are prescribed one or morepsychotropic medication. Stimulantsused for ADHD may decreaseappetite, whereas a-adrenergicagents may result in sedation anddecreased activity. The use ofselective serotonin reuptakeinhibitors for anxiety and depressionmay result in weight gain, althoughevidence remains equivocal.94,95

The SGA agents risperidone andaripiprazole are effective in treatingirritability in children with ASD butalso induce significant rapid weightgain,96 which may be mostlyassociated with metabolicsyndrome.97 The presence ofdisruptive behavior itself alsoappears to be related to obesity.98

Given the effectiveness of SGAs forirritability with aggression, disruptivebehaviors, and self-injury in youthwith ASD, the risk of side effects(including weight gain) is oftenaccepted by clinicians and families.A well-designed clinical trialdemonstrated weight loss by 8 weeksof treatment by using metforminhydrochloride in children and youth

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with ASD who experienced SGA-induced weight gain.52 Children 6 to9 years of age were titrated up toa dose of 500 mg twice daily, andthose 10 to 17 years of age weretitrated to a dose of 850 mg twicedaily. Clinical experience suggeststhat metformin may stabilize weightfor at least 2 years of SGA treatmenteven if weight loss does not occur.99

Metformin is approved for managingtype 2 diabetes, which increasessensitivity to insulin while decreasingboth intestinal glucose absorptionand hepatic glucose production.Studies have not evaluated thepotential impact of startingmetformin at the time that SGAs areinitiated to prevent weight gain.

Eating and Physical Activity Patterns

Providers should query parentsand/or caregivers about whether thechild exhibits high intake of sugar-sweetened beverages or foods thatare high in fat and/or sugar and/orhas low intake of entire food groups(eg, vegetables, meat, dairy, orgrains). Depending on the child’s

weight status and the intractability oftheir eating behaviors, counseling bythe provider or referral to behaviorand nutrition professionals may bewarranted. If parents express a desireto use dietary interventions toaddress ASD-related symptoms,providers should discuss the extent towhich those diets may influenceenergy balance and may elect to referto a dietetic professional.

Recommendation 5: ProvidersShould Follow the Staged ApproachOutlined in the 2007 ExpertCommittee Recommendations onChildhood Obesity With AdditionalSupport and Services From theChild’s School and/or Other HealthProfessionals

As with effecting change in otherareas of the lives of children withASD, the approach to weightmanagement must be highlystructured. Behavioral patterns andhabits are likely to be moreentrenched in children with ASD thanin TD children, and family stress isalso likely higher because of thebehavioral challenges and service

needs that this populationexperiences.100 The primary careprovider can be a tremendous sourceof support to children and theirfamilies by identifying weight-relatedconcerns early on, initiating earlyobesity prevention strategies,referring to behavioral and otherspecialists when the children’s eatingand/or physical activity habits areproblematic, and providing support tofamilies to devise strategies that willwork for their children. Table 3outlines the AAP’s 2007recommendations37 with paralleladaptations and modificationstailored to the needs of childrenwith ASD.

Providers are encouraged to work inconcert with developmentalspecialists (eg, DBPs and behavioralpsychologists) to address weight-related concerns. Developmentalspecialists may have autism-relatedexpertise that can assist primary careproviders in addressing lifestylefactors for children with ASD. At thesame time, primary care providerspossess knowledge and expertise in

TABLE 2 Medical Conditions Associated With ASD and Obesity and Approaches to Medical Assessment and Intervention

Condition Assessment and/or Intervention

Sleep disorders Include sleep in the review of systems.Consider the impact of sleep problems on abdominal pain, ADHD and/or anxiety, wandering, or elopement.Sleep hygiene and regular bedtime routines help children calm down from the day and provide cues for bedtime.54

Encourage the discontinuation of electronic media 60 min before bedtime.Melatonin is safe and effective for helping with sleep onset.

Gastrointestinal problems and foodselectivity

Use the same approach for a gastrointestinal workup as for children without ASD.Take a careful dietary history; include an assessment of food selectivity. Children with ASD may have insufficient fiber

and/or fluid in their diet with resultant constipation.Constipation management includes behavioral approaches, dietary fiber, exercise to increase peristalsis, adequate

fluids, and medication (such as polyethylene glycol) to promote passage of a soft stool.55

The Autism Speaks Autism Treatment Network toilet training and constipation toolkits provide useful information formanaging these issues in children with ASD (http://tinyurl.com/ATN-AIR-P-ToiletTraining and http://tinyurl.com/ATN-AIR-P-Constipation)

Consult a gastroenterologist and/or dietitian who is familiar with ASD for concerns about nutritional adequacy.Seek the support of a dietitian,occupational therapist, or speech and/or behavioral therapist with experience treating

problematic food refusal.A child may resist foods that are associated with discomfort (ie, pairing food[s] with episodes nausea, reflux, or a bout

of gastroenteritis)Neurologic disorders Monitor for sedation and psychomotor slowing as side effects of anticonvulsants.

Encourage active leisure for children with seizures and coordination challenges.Psychiatric and/or behavioral healthdisorders

Include a review of common behavioral symptoms, including ADHD-related behaviors, anxiety, mood changes,aggression, self-injury, and tantrums.

Change(s) in behavior may indicate an underlying medical condition. The history can help determine a behavioralreason for symptoms.

Medications used for management of ADHD and anxiety may be considered part of an overall behavioral plan.Metformin may be considered a means of minimizing wt gain in patients treated with SGAs.52,74

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TABLE 3 AAP Recommendations and ASD-Specific Modifications

AAP Recommendations for General Pediatric Population37 ASD-Specific Recommendations

AssessmentPrimary care providers should assess all children’s wt status

on at least a yearly basis to include calculation of height, wt,and BMI for age and plot on standard growth charts.

Measuring and/or weighing some children with ASD may bechallenging. Be flexible with measurement, such as leavingshoes on or holding a favorite object to obtain the bestpossible height or wt.

Parents can hold or stand on the scale with the child and thenbe weighed separately.

If child is uncooperative on a stadiometer, have them standagainst a wall and use a straight edge to mark the wall andmeasure height. Alternatively, allow the parent to obtainheight or wt.

Using spinning toys, which entertain or distract the child, maybe useful for encouraging children to stand on scales andstadiometers.

Segmental heights may be required for children who usea wheelchair or cannot stand long enough to obtain a height.Arm span or knee height can also be used to determineheight.53

Complete vital signs (especially blood pressure) at the end ofthe visit after the child has calmed down or acclimated to thevisit.

Assessing dietary patterns qualitatively should occur at eachwell-child visit. For children and youth with concerns aboutwt status, assessments should also include readiness tochange and identify specific dietary practices that may beappropriate targets for change:

Assess for food selectivity; simple screening questions:

• Frequency of eating fast food or at restaurants

• Does your child eat from all food groups on a daily basis?

• Excessive consumption of sugar-sweetened beverages

• Is your child specific about brands or food presentation (eg,only eats a certain type of chip, flavor of yogurt, or type offast food)?

• Excessive portion sizes for age

• What are your and your child’s favorite foods?

Additional dietary assessment elements can include:

Patterns of concern to look for include:

• Excessive consumption of 100% fruit juice

• Low or no consumption of entire food groups (fruits,vegetables, meat, dairy, or grains)

• Frequency and/or quality of breakfast• High consumption of sugar-sweetened beverages

• High intake of energy-dense foods• High consumption of high-fat or high-sugar food items (eg,baked goods and candy)

• Low consumption of fruits and vegetables • Child sneaks food, binges on food, or has vomited fromovereating

Treatment recommendationsPrimary care providers should address wt management and/

or lifestyle issues with all patients on at least a yearly basisirrespective of wt status.

Do not assume that parents of children with ASD areunconcerned about their children’s wt status.

All children ages 2–18 y with BMI values between the fifth and84th percentile should follow preventive recommendations(see below).

The staged approach per AAP guidance for prevention andintervention is also appropriate for children with ASD.

A staged approach should be taken to treat children ages2–19 y whose BMI is .85th percentile on the basis of childage, BMI, related comorbidities, parental wt status, andprogress in treatment. The child’s primary caregivers andfamily should be involved in the process.

Include school and other treatment personnel (eg, behaviorspecialists) to support behavior change.

Consider including eating and/or physical activity goals in IEPs.

Stage 1: prevention plusMay be implemented by the primary care providers with some

training in pediatric wt management or behavioralcounseling.

May be implemented by the primary care providers with sometraining in pediatric wt management or behavioralcounseling.

Goal: wt maintenance with growth resulting in decreasing BMIwith increasing age.

Goal: wt maintenance with growth resulting in decreasing BMIwith increasing age.

Monthly follow-up assessment recommended; after 3–6 mo, ifno improvement in BMI and/or wt status is noted, stage 2 isindicated, which is a structured wt management protocol(see below).

Monthly follow-up assessments; after 6 mo, if no improvementin BMI and/or wt status has been noted, advance to stage 2,a structured wt management protocol (see below).

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TABLE 3 Continued

AAP Recommendations for General Pediatric Population37 ASD-Specific Recommendations

Stage 1 recommendations include: Involving the parent(s) is essential; providers should work withthe family and recommend:• Consume .5 servings of fruits and vegetables per day

• Targeting gradual reduction (ideally elimination) of sugareddrinks and juices, including 100% fruit juices

• Minimize and/or eliminate sugar-sweetened beverages

• Developing viable strategies to manage portions and/oraccess to energy-dense foods (eg, removing temptation byeliminating certain energy-dense foods from the home orstoring them out of sight)

• Limit screen time to #2 h per d

• Serving fruits and/or vegetables that the child likes at eachmeal

• No television in the room where the child sleeps

• See additional suggestions for working with families andschools around healthy eating and physical activity

• Engage in .1 h of daily physical activity• The child and family should be counseled to adopt thefollowing eating behaviors

• Eating breakfast on a daily basis• Limiting meals eaten outside the home• Eating family meals at least 5–6 times per wk• Allowing the child to self-regulate his or her meals andavoiding overly restrictive behaviors

Providers should acknowledge cultural differences and assistfamilies in making appropriate adaptations to therecommendations.

Providers and family members should work together to set only1–2 realistic and obtainable goals to work on each month.

Stage 2: structured wtmanagement protocol

May be implemented by primary care providers highly trainedin wt management.

May be implemented by primary care providers highly trainedin wt management.

Goal: wt maintenance that results in decreasing BMI as ageand/or height increase.

Goal: wt maintenance that results in decreasing BMI as age and/or height increase.

Wt loss should not exceed 1 lb per mo for children 2–11 y ofage or an average of 2 lb per wk for older overweight orobese children and adolescents.

Wt loss should not exceed 1 lb per mo for children 2–11 y of ageor an average of 2 lb per wk for older children andadolescents with overweight or obesity

If there is no improvement in BMI and/or wt status after 3–6mo, then stage 3 is recommended (see below).

If there is no improvement in BMI or wt status after 6 mo, stage3 is recommended (see below).

Stage 2 recommendations include: Stage 2 recommendations include:• Consumption of a balanced macronutrient diet with smallamounts of energy-dense foods

• All of stage 1 for children with ASD recommendations andstage 2 recommendations from the AAP are also appropriate

• Provision of structured daily meals and snacks (breakfast,lunch, dinner, and 1–2 snacks per d)

• Add the services of professionals who can work as a team

• Supervised active play of .60 min per d

○ Occupational or speech therapist to address sensoryissues associated with extreme food selectivity ifapplicable• No more than 1 h per d of screen time

○ Behavioral specialist for resistance to making behavioralchanges

• Increased monitoring of target behaviors (eg, screen time,physical activity, dietary intake, and restaurant logs) byprovider, patient, and/or family ○ Dietitian for dietary counseling and/or support with

limited food repertoire• Reinforcement for achieving targeted behavior goals (not wtgoals) • Use a posted meal and snack schedule (eg, pictorial schedule

if appropriate for the child’s age and ability level)• Use a snack box with preselected and/or preportioned snacksto manage and/or limit snacking

• Implement a reward chart for completing physical activity,trying new fruits and vegetables, and drinking water

Stage 3: comprehensivemultidisciplinaryintervention

Patients whose BMI or wt status has not improved after 3–6mo should be referred to a multidisciplinary team thatspecializes in obesity treatment.

Patients whose BMI or wt status has not improved after 3–6 moshould be referred to a multidisciplinary team thatspecializes in obesity treatment.

Goal: wt maintenance or gradual wt loss until BMI is ,85thpercentile; as above, wt loss should not exceed 1 lb per mofor children 2–5 y of age or 2 lb per wk for older childrenand adolescents with obesity.

Goal: wt maintenance or gradual wt loss until BMI is ,85thpercentile; as above, wt loss should not exceed 1 lb per mofor children 2–5 y of age or 2 lb per wk for older children andadolescents with obesity.

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weight management that should beshared with other professionalsworking with the children. Pediatricpractices that employ colocatedbehavioral health clinicians shouldconnect them with patients with ASDwho have weight-related concernsearly on for guidance and support,identify resources, and makeappropriate referrals.

Primary care providers are ina position to exert influence on otherservice systems, such as schoolsystems, by advocating for servicesand supports to be included in

children’s Individualized EducationPrograms (IEPs). Providers canadvocate for eating and physicalactivity goals to be included in thechildren’s IEP. Federal law requiresthat children receiving IEPs mustreceive physical education; providerscan recommend adaptive physicaleducation consultation and services ifa child is experiencing difficulties inphysical education programming atschool (Table 1).53,62

In cases in which parents and/orcaregivers experience behavioralchallenges associated with making

dietary changes or reducing screentime, providers should refer toa behavioral specialist. Children withASD can display disruptive behaviorin response to changes in dietaryroutines (eg, the introduction of newfoods), changes in eating schedules,and efforts to reduce screen time.These behaviors serve the function(for the child) of avoiding or escapingexperiences they perceive as aversive.Understandably, when parents workon their own without training in howbest to enact change, conflicts mayensue, and parents may end upcapitulating to the children’s

TABLE 3 Continued

AAP Recommendations for General Pediatric Population37 ASD-Specific Recommendations

Eating and activity goals are the same as in stage 2 and shouldinclude:

Recommendations are the same as in stage 2 and the AAP’sstage 3 but may also include 1 or more of the followingstrategies, tailored to the individual child:• Planned negative energy balance achieved through

structured diet and physical activity • Use food lists and/or guides such as the Stoplight Approachwith support from a dietitian to help select snacks and/orguide meals

• A structured behavior modification program, includingmonitoring and development of short-term diet and physicalactivity goals • Remove trigger foods such as sugared beverages, chips,

sweets, and other high-energy–dense foods from the house• Involve primary caregivers and/or family members forbehavioral modification for children ,12 y of age • Plan for a favorite food to be consumed 1 time per wk to

prevent deprivation but do not use as a reward• Training families to improve the home environment• Consider having family track calorie intake using a Web-basedapplication with assistance from the dietary team

• Frequent office visits, weekly visits for a minimum of 8–12wk, and subsequent monthly visits on a monthly basis to aidin maintaining new behaviors • Identify locations for accessible physical activity

• Systematic evaluation of body measurements, dietary intake,and physical activity should be conducted at baseline andspecific intervals throughout the program

Stage 4: tertiary-careprotocol

Recommended for children .11 y of age with BMI .95thpercentile who also have significant comorbidities and havenot been successful in stages 1–3 or for children with BMIof .99th percentile who have shown no improvement instage 3.

Recommended for children .11 y of age with BMI .95thpercentile who also have significant comorbidities and havenot been successful in stages 1–3 or for children with BMI of.99th percentile who have shown no improvement in stage3.

Treatment should include continued diet and activitycounseling and consideration of additions such as mealreplacements, low-calorie diets, medication, and possiblysurgery.

Treatment should include continued diet and activity counselingand consideration of the following strategies overseen bya team specializing in wt management of children withexperience in working with children and youth with ASD andtheir families:

• Family tracking of calorie intake by using a paper- or Web-based application

• Use of meal replacements if the child does not have strongfood aversions

• Medications to counteract the effects of SGAs if medicallyappropriate

Consultation to evaluate candidacy for surgical intervention;guidance from the American Society for Metabolic andBariatric Surgery indicates that ASD should not bea contraindication for bariatric surgery. Intervention shouldbe considered on a case-by-case basis for the patient’s needsand ability to engage in the dietary and/or lifestyle changesrequired before and after surgery.57

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behavior. Behavioral specialists usesystematic, reinforcement-basedapproaches for gradually introducingchanges to a child’s routine in waysthat avoid or limit adverse behavioralreactions. They can also conductsystematic preference assessments toidentify new sources of positivereinforcement that support dietaryand physical activity–related behaviorchange. Such assessments can alsoinclude identifying nonfood orhealthier-food alternatives for use asreinforcers69 at home and school.

CONCLUSIONS

Children with ASD are at increasedrisk of obesity for both behavioraland biological reasons. Little to noresearch exists on weightmanagement for children with ASD inprimary care settings. While we awaitthe results of additional research onobesity and effective treatments forchildren with ASD, providers canadapt the interventions that areknown to prevent and treat obesity inTD children for implementation bythe family, school, and other relevantentities on behalf of children andyouth with ASD.

This is the first ASD-specific resourceon weight management for pediatricprimary care providers. Therecommendations contained hereinare based on extant research andclinical consensus but have not beenformally tested. As such, theyrepresent an emerging area of clinicalintervention. Future research isneeded to identify the ways in whichproviders can be most successful andeffective in supporting children withASD and their families in obesityprevention and intervention efforts.Future recommendations andeffective strategies will need to beinformed by new evidence.Nevertheless, these recommendationscan assist providers in addressingthis important issue in clinicalpractice with children with ASD andtheir families.

ABBREVIATIONS

AAP: American Academy ofPediatrics

ADHD: attention-deficit/hyperactivity disorder

ASD: autism spectrum disorderDBP: developmental-behavioral

pediatricianHWRN: Healthy Weight Research

NetworkI/DD: intellectual and/or

developmental disabilitiesIEP: Individualized Education

ProgramSGA: second-generation

antipsychoticTD: typically developing

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