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Linda Bandini,

1 UMass

1,2
PhD ;

Carol Curtin,

1
MSW ;

Aviva Must,

3
PhD

Medical School/E.K. Shriver Center; 2Boston University College of Health and Rehabilitation Sciences: Sargent College 3 Tufts University School of Medicine;

MISSION

NETWORK ACTIVITIES

Funded by the Maternal Child Health Bureau in 2013,


the mission of the HWRN-ASD/DD is:
to advance the understanding of obesity risk factors in
children with ASD and other developmental disabilities
to promote the development of evidence-based
solutions to achieve healthy weight in this population
to disseminate research findings to broad and diverse
audiences.

RESEARCH AGENDA
The HWRN-ASD/DD fulfills its interdisciplinary research
agenda by:
engaging in formative research
conducting pilot and feasibility and/or acceptability
studies
developing collaborative relationships to leverage
extramural funding for interdisciplinary research.
The Research Agenda focuses on:
childrens eating patterns and behaviors
family practices around food/mealtimes
physical activity
sedentary behavior patterns
how school and community-based organizations exert
influence on childrens food intake and physical
activity
how these environments may be modified to promote
healthy weight in youth
how prevention or intervention programs can be
developed, adapted, and delivered

HWRN
MEMBERS &
ADVISORS

PILOT STUDIES

SECONDARY DATA ANALYSES

Promoting Physical Activity in Adolescents with Intellectual & Developmental Disabilities


Lauren Ptomey, PhD, RD, LD & Joseph Donnelly, EdD
University of Kansas Medical Center Research Institute

Secondary data analysis on the prevalence of overweight and obesity in youth with ASD and intellectual
developmental disabilities
HWRN Secondary Data Analysis Core

Data on effective strategies for increasing physical activity (PA) in adolescents with IDD is extremely limited.
This is a 12-week pilot study to explore using technology to deliver a physical activity program to 30
adolescents with IDD using video conferencing via a tablet computer. All participants will be provided with a
tablet computer and a Fitbit wireless PA monitor to assess PA during the exercise sessions and any equipment
(resistance bands, hand weights) needed for the intervention. Three weekly 30-minute PA sessions, focusing on
both cardiovascular and strength training, will be delivered to groups of five adolescents with IDD in their
homes by video conference on a tablet computer. The primary aim will be assess the feasibility of delivering
a group-based PA intervention, conducted via video conferencing on a tablet computer, in a sample of
adolescents with IDD. The secondary aims are to: 1) assess the quality of weekly activity accumulated during
the group exercise sessions, using data from the Fitbit activity monitor. It is expected participants will obtain
at least 20 minutes of moderate-to-vigorous PA at each lesson, and 2) assess participants attitudes toward
PA using two simple questionnaires administered at baseline and at the end of the 12-week intervention. It is
expected that attitude and self-efficacy toward PA will improve across the 12-week intervention.

Family-Based Weight-Loss Treatment for Autism Spectrum Disorder


Kerri Boutelle, PhD
University of California, San Diego
Currently, the gold-standard behavioral intervention for weight loss in children is family-based behavioral
treatment (FBT), which provides treatment to both the parent and the child. The initial efficacy of a parentonly intervention has been demonstrated by the investigative team and represents a promising model to
provide weight-loss treatment for parents of overweight and obese children with ASD. The purpose of this
pilot project is to design and pilot a parent-only FBT for weight loss specifically tailored to the unique needs
and concerns parents of children with ASD. Existing FBT manuals will be modified to incorporate parenting
skills and behavior modification strategies unique to parents of children with ASD as well as session topics
that focus on ASD and dietary restrictions, increasing child motivation, introducing novel food stimuli to
children, and increasing consumption of fruits and vegetables. Twenty families of children ages 5-13 yrs with
will be recruited to attend a weekly 16-session FBT-ASD group. The feasibility, acceptability and initial
efficacy of the program will be evaluated, including parent and child weight loss, food intake, physical
activity, home food environment, and mealtime behavior.

Using dance to promote fitness and well-being in adolescent girls with ID


Heidi Stanish, PhD
University of Massachusetts Boston
Dance represents a promising vehicle for promoting PA among girls generally, and may be particularly wellsuited to girls with ID. Dance is viewed as an enjoyable and popular activity and may serve as an ideal
means for engaging girls with ID by virtue of its non-competitive nature, the ability to participate regardless
of skill level, and the camaraderie and opportunity for personal expression that it often affords. The
proposed pilot study will test the feasibility of a 10-week dance intervention for adolescent girls with ID that
includes group dance classes held at a YMCA and an at-home practice component. The implementation of
the dance intervention will be evaluated through measures of enjoyment and satisfaction, attendance,
retention, engagement in moderate-to-vigorous physical activity (MVPA) in group classes, and participation
level in at-home practice sessions. Changes in cardiorespiratory (CR) fitness will be assessed and the impact
of the intervention on participants physical self-perception will be examined. Sixteen to 20 girls with ID
ages 13-21 will participate.

Purpose: To estimate obesity prevalence in children with ASD and ID and to assess how weight status is
influenced by child age, co-morbidities, and modifiable risk factors associated with mealtimes and physical
activity.
Used the 2011-2012 wave of the National Survey of Childrens Health, a nationally representative
survey conducted by the CDCs National Center for Health Statistics.
95,677 parent interviews were completed from February 2011 through June 2012
Parents were interviewed about their childs health. Parents reported height, weight, child age, comorbidities, and modifiable risk factors associated with mealtimes and physical activity.
Abstract on analyses were presented at the Obesity Society in November 2014
One paper has been submitted to BMC Pediatrics, Prevalence of obesity in children with ASD
Second paper on prevalence of obesity in children with ID is in preparation.

HWRN PUBLICATIONS & PRESENTATIONS

Peer-reviewed articles
Curtin, C. Hubbard, K., Anderson, S.E., E. Mick, A. Must, L.G. Bandini (in press) Food Selectivity, mealtime behavior
problems, spousal stress, and family food choices in children with and without Autism Spectrum Disorder" Journal of
Autism and Developmental Disorders
Curtin, C., Bandini, L.G., Must, A., Phillips, S. Maslin, M.C.T., Lo, C., Gleason, J.M., Fleming, R.K., Stanish, H.I. (in press)
Including youth with intellectual disabilities in health promotion research: development and reliability of a structured
interview to assess the correlates of physical activity among youth. Journal of Applied Research in Intellectual Disabilities
Stanish, H.I., Curtin, C., Must, A., Phillips, S. Maslin, M.C.T., Bandini, L.G. (in press) Comparison of enjoyment, barriers,
and beliefs about physical activity among adolescents with and without autism spectrum disorder. Adapted Physical
Activity Quarterly.
Stanish, H.I., Curtin, C., Must, A., Phillips, S., Maslin, M.C.T., Bandini, L.G. (in press) Physical activity enjoyment, perceived
barriers, and beliefs among adolescents with and without intellectual disabilities, Journal of Physical Activity & Health.
PMID: 25830443
Must, M., Curtin, C., Hubbard, K., Sikich, L. Bedford, J., Bandini, L.G. (2014) Obesity prevention for children with
developmental disabilities. Current Obesity Reports, 3:156-170
Abstracts/papers/presentations national meetings
Healthy Weight Research Network for Children with ASD/DD, The CAAI virtual poster symposium, July 2014
Healthy Weight Research Network. ATN/AIR-P Advances in Autism Research & Care Webinar, July 15, 2014.
Healthy Weight Research Network for Children with ASD/DD, AUCD 2014 Conference, Washington DC, November 11,
2014
Establishing a Research Network Agenda for Promoting Healthy Weight among Children with Autism Spectrum Disorder
and Developmental Disabilities (ASD/DD) American Public Health Association (APHA), New Orleans, LA, November
2014,
The Obesity Society, November 2014, in Boston, MA:
o Elevated prevalence of obesity among children with autism spectrum disorder (ASD): the disparity increases across
pre-adolescent and adolescent ages
o Elevated prevalence of obesity among children with intellectual disabilities (ID): the disparity increases across preadolescent and adolescent ages
o A research gap: obesity in children with autism and other developmental disabilities
Obesity As a Modifiable Risk Factor in the Treatment of Feeding Problems in Children with ASD, as part of the panel
entitled, "You Want Me to Eat What? Novel Treatment Approaches for Food Selectivity and Feeding Problems in
Children with Autism Spectrum Disorder," 2015 International Meeting for Autism Research (IMFAR), May 2015, Salt Lake
City, Utah

HWRN ADMINISTRATIVE CORE


Linda G. Bandini, PhD, Associate Professor of Pediatrics, E.K. Shriver Center- UMass Medical School; Boston University College of Health and Rehabilitation Sciences: Sargent College ; Carol Curtin, MSW, Research Assistant Professor of Family Medicine & Community Health, E.K. Shriver Center- UMass Medical School; Aviva Must, PhD, Professor of Public Health, Tufts University School
of Medicine; Jessica DiBari, PhD, MHS, Health Scientist, Division of Research, Maternal-Child Health Bureau, HRSA; Donna Caira, E.K. Shriver Center, UMass Medical School; Helen Hendrickson, MPA, E.K. Shriver Center, UMass Medical School; Misha Eliasziw, PhD, Tufts University School of Medicine; Sarah Phillips, MPA, Tufts University School of Medicine
CORE MEMBERS
Kerri Boutelle, PhD, Associate Professor Pediatrics, University of California, San Diego; Joseph Donnelly, EdD, Professor of Internal Medicine, Center for Physical Activity and Weight Management, University of Kansas; Richard Fleming, PhD, Professor, Department of Exercise and Health Sciences University of Massachusetts-Boston; Sandra Hassink, MD, Director of the Childhood and
Adolescent Weight Management Clinic, Nemours/A.I. duPont Hospital for Children; Kathleen Humphries, PhD, Associate Director of the Institute on Development & Disability
Director of the University Center for Excellence in Developmental Disability Oregon Health & Science University; Tanja Kral, PhD, Assistant Professor Department of Biobehavioral Health Sciences University of Pennsylvania; Angela Odoms-Young, PhD, Assistant Professor, Department of Kinesiology and Nutrition, University of Illinois at Chicago; James Rimmer, PhD, Director of the
Lakeshore Foundation/University of Alabama-Birmingham Research Collaborative University of Alabama at Birmingham; Mary Segal, PhD, Senior Research Scientist, Center for Obesity Research and Education, Temple University; Nancy Elizabeth Sherwood Johnson, PhD, Senior Research Investigator HealthPartners Institute for Education and Research, School of Public Health; Linmarie
Sikich, MD, Child Psychiatrist and Associate Professor University of North Carolina at Chapel Hill; Heidi Stanish, PhD, Associate Professor; Department of Exercise and Health Sciences University of Massachusetts-Boston
ADVISORS
James Perrin, MD, Professor of Pediatrics, Harvard Medical School; Director, Mass General Center for Child and Adolescent Health Policy; Director, Autism Intervention Research Network on Physical Health; Michael H. Fox, ScD, Science Officer, Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control
and Prevention; Tawara Goode, MA, Assistant Professor, Department of Pediatrics, Georgetown University Medical Center; Darcie Mersereau, MPH, Vice President, Special Olympics; Elizabeth Weintraub, Member, President Obamas Committee for People with Disabilities Association of University Centers on Disabilities; Nate Blum, MD, Director, Developmental-Behavioral Pediatrics
Research Network The Childrens Hospital of Philadelphia