Exploring Social, Economic and Environmental Determinants of Health
Break the Cycle of Autism Disparities
Promoting Equity
for Children with Autism
Autism Spectrum Disorder (ASD; autism)
is widely known to be characterized by heterogeneity in expression and outcome trajectories but is less recognized as a condition impacted by disparities in research on what we know about autism in different communities, access to care, and advocacy.
These disparities are connected to social factors such as race, gender, ethnicity, culture, socio-economic status, and geographic location.
Further, there is a dearth of information about prevalence and resources for autism in non-Western countries.
Disparities can lead to delays in evaluation and diagnosis, insufficient or no access to care, missed- and misdiagnoses, poor educational programs, higher rates of unemployment and criminal justice interactions, and the development of other health, social, and economic concerns.
THE ISSUE
MISSION
We will address and bring attention to promoting equity in autism and work towards sustainable solutions to disparities within our home countries and on an international level. We will work with stakeholders in the community—including autistic people, caregivers and families, clinicians, service providers, and researchers—to:
Learn from and work with underserved communities to Identify pressing issues related to their experiences to disparate care and resources
Develop relevant research questions related to promoting autism equity and appropriate methodologies to study these questions
Expand the growth of interdisciplinary research on autism disparities
Emphasize the need for more international research and resources
Disseminate important information about and resources for autism to communities who experience disparities
Disseminate information about disparities and equity to stakeholders in the autism community from community stakeholders to policy makers.
We aim to be a source of support for any group or individual interested in promoting autism equity on the local, national, and international levels.
REFERENCES
Angell, A.M, Empey, A. and Zuckerman, K.E. (2018) A Review of Diagnosis and Service Disparities Among Children with Autism From Racial and Ethnic Minority Groups in the United States. International Review of Research in Developmental Disabilities, Volume 55. https://doi.org/10.1016/bs.irrdd.2018.08.003
Bishop-Fitzpatrick, L., & Kind, A. J. (2017). A scoping review of health disparities in autism spectrum disorder. Journal of Autism and Developmental Disorders, 47, 3380–3391. doi:10.1007/s10803-017-3251-9
Daniels, A. M., & Mandell, D. S. (2014). Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism, 18, 583–597. doi:10.1177/
1362361313480277
Elder, J. H., Brasher, S., & Alexander, B. (2016). Identifying the barriers to early diagnosis and treatment in underserved individuals with autism spectrum disorders (ASD) and their families: A qualitative study. Issues in Mental Health Nursing, 37, 412–420. doi:10.3109/01612840.2016.1153174
Iadarola, S., Hetherington, S., Clinton, C., Dean, M., Reisinger, E., Huynh, L., . . . Kasari, C. (2015). Services for children with autism spectrum disorder in three, large urban school districts: Perspectives of parents and educators. Autism, 19, 694–703. doi:10.1177/1362361314548078
Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., & Fryer, G. E. (2008). Disparities in diagnosis and access to health services for children with autism: Data from the National Survey of Children’s Health. Journal of Developmental & Behavioral Pediatrics, 29, 152–160. doi:10.1097/
DBP.0b013e318165c7a0
Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51, 141–153. doi:10.1352/
1934-9556-51.3.141.
Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., & Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99, 493–498. doi:10.2105/
AJPH.2007.131243
Parish, S. L., Thomas, K. C., Rose, R., Kilany, M., & Shattuck, P. T. (2012). State Medicaid spending and financial burden of families raising children with autism. Intellectual and Developmental Disabilities, 50, 441–451. doi:10.1352/1934-9556-50.06.441
Singh, J. S. and Bunyak, G. “Autism Disparities: A Systematic Review and Meta-Ethnography of Qualitative Research,” Qualitative Health Research, First published, November 25, 2018: 1-13. DOI: https://doi.org/10.1177/1049732318808245
Zuckerman, K. E., Mattox, K. M., Sinche, B. K., Blaschke, G. S., & Bethell, C. (2014). Racial, ethnic, and language disparities in early childhood developmental/behavioral evaluations: A narrative review. Clinical Pediatrics, 53, 619–631. doi:10.1177/0009922813501378
International References (more needed)
Agrawal S, Rao SC, Bulsara MK, et al. Prevalence of Autism Spectrum Disorder in Preterm Infants: A Meta-analysis. Pediatrics. 2018;142(3):e20180134
PEOPLE
Brian Barger
Research Assistant Professor, Epidemiology & Biostatistics, Georgia State University School of Public Health
Dr. Brian Barger serves as the Director of Research and Evaluation at the Center for Leadership in Disability housed in the School of Public Health at Georgia State University where he is also a Research Assistant Professor of Epidemiology and Biostatistics. Dr. Barger's primary research program focuses on understanding how young children with autism and developmental disabilities are identified in their communities so they may receive early intervention and community-based treatments. He currently serves as PI on autism projects funded by the US Forest Service and the Maternal and Child Health Bureau, and has served as PI and Co-I on numerous projects funded by private (e.g., the Organization for Autism Research) and other federal (e.g, Department of Education) agencies. He has authored 30 studies appearing in autism (e.g., Journal of Autism and Developmental Disabilities), public health (e.g., Journal of Social Psychiatry and Psychiatric Epidemiology) and early childhood (e.g., Topics in Early Childhood Special Education) journals and actively serves as a methodologist on numerous projects related autism, developmental disabilities and maternal and child health across the lifespan.
Dr. Susan Brasher
Dr. Susan Brasher is an Assistant Professor at the Emory University Nell Hodgson Woodruff School of Nursing. Her background includes being a Certified Pediatric Nurse Practitioner and Pediatric Registered Nurse. She obtained her PhD in in Nursing with an emphasis in pediatric neurodevelopmental disorders, specifically autism spectrum disorder (ASD). She has served as a Principal Investigator (PI) and Co-Investigator (Co-I) of numerous funded grants aimed at identifying and reducing health disparities in children and young adults with ASD. Her clinical and research experiences have spanned across multiple healthcare and community settings.
She has over five years of experience as the PI, co-I, and project coordinator of multiple funded Patient Centered Outcomes Research Institute (PCORI) grants working alongside community and research team members to address health disparities of children and young adults with ASD. She is passionate about early diagnosis and intervention in ASD as a means to improving lifelong neurodevelopmental trajectory. She has worked extensively with patients, clinicians, caregivers, and researchers in rural and medically underserved areas (MUAs) to identify health disparities and factors related to delayed ASD diagnosis and treatment in underserved populations. Recently, she was appointed to be a PCORI ambassador to expand knowledge and participation in patient-centered outcomes research (PCOR) across the country. She is committed to working closely with children and young adults with ASD to minimize health disparities and improve health outcomes.
Samuel Fernandez-Carriba, Ph.D.
Senior Psychologist at the Marcus Autism Center, Children’s Healthcare of Atlanta, and Senior Program Coordinator at the Center for Contemplative Science and Compassion-Based Ethics (CCSCBE), at Emory University.
He obtained his PhD in Clinical and Health Psychology from Universidad Autónoma de Madrid, Spain. Two years of his doctoral training took place at the Yerkes National Research Primate Center (Emory), where he approached the study of human emotions through an examination of biological determinants and evolutionary history as observed in the chimpanzee. This gave rise to numerous peer-reviewed articles, presentations at international conferences, and even appearances in international popular media like CNN and the National Geographic magazine. After his return to Emory, he completed a postdoctoral fellowship at the Emory Autism Center (Emory School of Medicine Department of Psychiatry). At the Marcus Center, he conducts diagnostic evaluations on children and teenagers with Autism Spectrum Disorder and related disorders, as well as research on two related topics: (1) the potential of mindfulness and compassion meditation practice as a systematic training to foster resilience and social competence in populations under high stress, including caregivers and providers of individuals with ASD, and (2) sociocultural factors in healthcare and cultural competence in providers. He obtained his CBCT® (Cognitively Based Compassion Training) Instructor Certificate, Level 1, in 2013, and his Senior Level in April, 2018, at Emory University. This allows him to investigate and apply clinically CBCT® to this population at the Marcus Center and internationally through the Center for Contemplative Science to a wider range of conditions. This recent work has led to one peer-reviewed article, three book chapters and has been covered by CNN.
Karen Guerra MS CCC-SLP
Karen Guerra MS CCC-SLP is a bilingual (Spanish/English) speech-language pathologist who has spent the past 18 years focusing on the evaluation and treatment of monolingual and bilingual children and families with autism spectrum disorder (ASD) and other related disabilities. Karen received her Master’s degree in Audiology and Speech Pathology at Florida State University and has presented at both state and national levels on issues related to diagnosis and treatment of culturally and linguistically diverse learners. Karen recently served as a co-investigator on a study looking at parental stress levels and social communication training for Spanish-speaking caregivers with young children with ASD. She currently leads a monthly support group at the Marcus Autism Center for Spanish-speaking families and is interested in collaborating with others on identifying and creating pathways for children and families facing racial and ethnic disparities related to diagnosis and treatment of ASD.
Raun D. Melmed, MD, FAAP,
Raun D. Melmed, developmental and behavioral pediatrician, is director of the Melmed Center in Scottsdale, Arizona and co-founder and medical director of the Southwest Autism Research and Resource Center in Phoenix. He is on faculty at Arizona State University in Phoenix and Associate Professor of Pediatrics at the University of Arizona in Tucson. Together with Leslie Rubin, MD, he co-founded Autism Rising, a Global Autism Initiative.
Dr. Melmed earned his medical training at the University of Cape Town, South Africa, and completed a fellowship at Children's Hospital Medical Center in Boston. He is a member of the Society for Developmental and Behavioral Pediatrics and a fellow of the American Academy of Pediatrics He is board certified in Pediatrics and Developmental and Behavioral Pediatrics.
Dr. Melmed is an investigator of novel therapeutic agents in the treatment of autism, Fragile X, Angelman’s disorder and ADHD and collaborates on studies of tools used in the early diagnosis of developmental disorders.
He has set up nationally recognized physician training programs for the early identification of infants and toddlers with developmental and behavioral concerns and authored a program geared toward the early screening for autism spectrum disorders. He is the author of Succeeding with Difficult Children; Autism: Early Intervention; Autism and the Extended Family; and a series of books addressing mindfulness in children including Marvin’s Monster Diary – ADHD Attacks and Timmy’s Monster Diary: Screen Time Attacks! Harriet’s Monster Diary – Awfully Anxious, and soon to be released, Lyssa’s Monster Diary, Anger Explosions.
I Leslie Rubin MD
Associate Professor, Department of Pediatrics, Morehouse School of Medicine
Adjunct Associate Professor in the Department of Pediatrics at Emory University School of Medicine
Co-director, Southeast Pediatric Environmental Health Specialty Unit, Emory University School of Medicine
Founder, Break the Cycle of Health Disparities, Inc.
Medical Director, The Rubin Center for Autism and Developmental Pediatrics
In addition to his private practice, The Rubin Center for Autism and Developmental Pediatrics in Sandy Springs, he directs interdisciplinary clinical programs for children with Autism, Cerebral Palsy and other developmental disabilities at Hughes Spalding Children’s Hospital, in Atlanta. He is currently working on a project to explore the disparities in availability and accessibility of diagnostic and therapeutic services for children with autism who are from low income families and communities. In 2015 he joined the Emory University Neurodevelopmental Exposure Clinic, which is an interdisciplinary, research program looking at the impact of prenatal exposures on development in the context of the social and economic disadvantage and health disparities. He also provides consultation and clinical services to the Hall County Children’s Medical Services on a regular basis. His latest publication in this area is: Health Care for people with intellectual and developmental disabilities across the lifespan, Springer 2016.
As Co-director of the Southeast PEHSU at Emory he participates in local, regional, national and international activities relating to children’s environmental health with a focus on social, economic and environmental determinants of health and disability and health disparities. In 2004, he started a program called: Break the Cycle of Children’s Environmental Health Disparities. This program is now in its 14th year and, to date, there have been over 130 students from 50 university departments in 10 States in the USA as well as students from Latin America, Europe and Africa that have resulted in more than 100 student papers in 10 international journal supplements and 10 Books with Nova Publishers in their Public Health Series. The goal of this program is to raise awareness of children’s environmental health disparities and cultivate future leaders to address these challenges.
In 2018 he partnered with Dr. Jennifer Singh, Associate Professor of Sociology at Georgia Institute of Technology, to survey the challenges faced by the low-income families who brought their children to the Autism Clinic at Hughes Spalding Children’s Hospital. This survey revealed details of the challenges faced by the families in obtaining timely and accurate diagnosis and access to necessary services, as well as providing insight into what the needs are and how the situation might be improved. The results of the survey have been presented at national and international meetings. Attention to these disparities resulted in the connection with other researchers at other universities and was the impetus to form the Break the Cycle of Autism Disparities Workgroup. Plans for local, state and national collaboration and presentations are in the works.
He is actively involved in the American Academy of Pediatrics (AAP) as the Georgia Chapter Chair of the Environmental Health Committee and District 10 Facilitator for the Community Access to Child Health Program (CATCH). He is on the Board of Scientific Counsellors at the US Environmental Protection Agency (EPA) focused on promoting Sustainable Healthy Communities. He is also the Chair of the National PEHSU Steering Committee and is on the Advisory Councils of HERCULES, the Human Exposome Reach Center; the Emory Children’s Environmental Health Research Center; and the Center of Excellence in Maternal and Child Health Education, Science, and Practice, all at Emory University and on the Board of the International Society for Child Health and the Environment.
Among his awards for various activities, he received the Calvin C. J. Sia Community Pediatrics Medical Home Leadership and Advocacy Award from the AAP in 2012; the Martin Luther King Jr. Community Service Award from the Rollins School of Public Health and Goizueta Business School of Emory University, in 2013; the Robert E. Cooke Lifetime Achievement Award from the AADMD in 2015; the Children’s Environmental Health Excellence Award from the US EPA in 2016; and the Autism Achievement Award from the Annual Conference and Exposition of Georgia in 2016. In November 2018 he received the F. Edwards Rushton CATCH Award from the AAP.
Website: www.breakthecycleprogram.org
Website: www.pehsu.emory.edu
Website: www.therubincenterforautism.org
Jennifer C. Sarrett
Jennifer C. Sarrett is a Lecturer at Emory University’s Center for the Study of Human Health. Her research and scholarship focuses on issues related to the construction and experience of intellectual and developmental disabilities, specifically autism. For this work, she employs the tools of disability studies, health humanities, medical history, human geography, psychiatric anthropology and neuroethics. She became interested in disparities through her dissertation project, which explored parental and professional experiences of autism in Atlanta, GA USA and Kerala, India. Since the completion of this work, she has worked on projects concerning preclinical indicators of autism and self-diagnosis in the autism community. She has also completed projects that gather information from autistic adults on their post-secondary experiences asking how these experiences could be made more autism friendly. Her most recent line of research focuses on intellectual and developmental disabilities in the criminal justice system. This work looks at the factors involved in the experiences people with autism and other intellectual and developmental disabilities have with the criminal justice system and how these experiences reflect and exacerbate disparities in this community. At Emory, she teaches undergraduate seminar courses on disability and bioethics, mental illness and culture, and health and human rights.
Celine A. Saulnier, Ph.D.
Licensed Clinical Psychologist
Founder, Neurodevelopmental Assessment & Consulting Services
Email: celine@nacsatl.com
Celine Saulnier, Ph.D., obtained her doctorate in Clinical Psychology from the University of Connecticut, after which she completed a postdoctoral fellowship and then joined the faculty at the Yale Child Study Center. At Yale, Dr. Saulnier specialized in diagnostic evaluations for individuals with autism and related disorders from infancy through adulthood, as well as adaptive behavior profiles in ASD. In 2011, she relocated to the Marcus Autism Center & Emory University School of Medicine to help develop and direct a large-scale clinical research program. As an investigator on a NIH Autism Center of Excellence Network grant, she conducted research on disparities in African American individuals with ASD. In June 2018, she left Marcus to open her own diagnostic clinic and consulting company, Neurodevelopmental Assessment & Consulting Services, and she remains an Adjunct Associate Professor at Emory. Dr. Saulnier has published numerous articles, written two books, Essentials of Autism Spectrum Disorders Evaluation and Assessment and Essentials of Adaptive Behavior Assessment of Neurodevelopmental Disorders, and is co-author of the Vineland Adaptive Behavior Scales, Third Edition, the world’s leading measure for adaptive behavior.
Jennifer S. Singh MPH, PhD
Jennifer S. Singh is Associate Professor of Sociology in the School of History and Sociology at Georgia Institute of Technology. She is the author of the book Multiple Autisms: Spectrums of Advocacy and Genomic Science, which explores a range of perspectives from scientists, activists, parents, and people with autism surrounding the rise and implementation of autism genetics research. Her current research investigates the quality of care provided by a community-based autism clinic that serves under-privileged communities, as well as an intersectional analysis of social, economic, and structural disparities to autism diagnosis and services. She also teaches service learning courses that focus on social determinants of health. Prior to coming to Georgia Tech, Singh worked in the biotechnology field for eight years and was an Association of Schools of Public Health Research Fellow at the Center for Disease Control and Prevention.
Jennifer L. Stapel-Wax, Psy.D.
Associate Professor
Division of Autism and Related Disorders
Department of Pediatrics
Emory University School of Medicine
Director, Infant and Toddler Community Outreach Research Core
Marcus Autism Center, Children's Healthcare of Atlanta
Dr. Jennifer Stapel-Wax is an Associate Professor in the Division of Autism and Related Disorders in the Department of Pediatrics at Emory University School of Medicine. Her primary clinical and administrative role is as the Director of the Infant Toddler Community Outreach Research Core at the Marcus Autism Center at Children's Healthcare of Atlanta.
Dr. Stapel-Wax has worked clinically with children and families for 25 years with a 20-year career in doctoral level research, clinical practice and graduate level teaching at Emory University, the Georgia School of Professional Psychology and at the Marcus Autism Center. She completed her doctorate in clinical psychology at the Georgia School of Professional Psychology and her internship in pediatric behavioral medicine and neurodevelopmental disabilities at Miami Children’s Hospital. Dr. Stapel-Wax completed her postdoctoral fellowship in neuropsychology and neurodevelopmental disabilities at the Marcus Center/Emory University postdoctoral fellowship program.
Dr. Stapel-Wax’s specialties include assessment of young children, neurodevelopmental disorders and consultation/liaison in multiple systems of care. Dr. Stapel-Wax is actively involved in her professional community through her positions on advisory boards, as a consultant, as a member of the board of directors and as a Past President of the Georgia Psychological Association. She is also a senior member of the Division of Autism and Related Disorders faculty and as such provides supervision and mentoring to junior faculty and sits on several Department of Pediatrics committees. She is a member of several national and international collaboratives focused on early screening, early identification and early intervention.
Dr. Stapel-Wax’s clinical and research interests are in the areas of development and assessment of young children, neurodevelopmental disorders, and teaching, training and supervision. Dr. Stapel-Wax uses her clinical and interpersonal strengths in building collaborative and consultative relationships among professional colleagues in the community and other institutions. She is also an accomplished speaker and teacher as well as an expert in building of strong collaborative relationships focused on training, education, and service delivery. Her current focus is to lead community-based research on infants and toddlers at risk for autism spectrum disorders based at the Marcus Autism Center. She is a site principal investigator on a current NIH Autism Center of Excellence study addressing very early intervention, an investigator on the NIMH R01 study on Mobilizing Community Systems and a Co-Principal Investigator on a recently funded Institute for Educational Services grant addressing early intervention. Dr. Stapel-Wax provides leadership for community based research on infants and toddlers at risk for autism spectrum disorders based at the Marcus Autism Center. She is also leading several outreach efforts to build a community viable healthcare system for infants and toddlers.
Representing The Marcus Autism Center, Children’s Healthcare of Atlanta and Emory University Department of Pediatrics, Dr. Stapel-Wax was the lead principal investigator for the “Dare to Forget the Box” grant for Talk With Me Baby. She is one of the key leaders behind the Talk With Me Baby (TWMB) movement along with her partners-Georgia Department of Public Health, Georgia Department of Education, Get Georgia Reading-The Campaign for Grade Level Reading, Nell Hodson Woodruff School of Nursing at Emory University and the Atlanta Speech School. Capitalizing on the strengths, resources, and statewide reach of these leaders, TWMB is aggressively implementing capacity building strategies early in the developmental period to collectively address the early language gap that has dramatic implications for reading proficiency by third grade and further dramatic implications on education and health outcomes over the lifetime.
Stephanie Wagner, BA
Stephanie Wagner is a current MD candidate at Emory University School of Medicine and Master’s of Public Health Candidate at the Rollins School of Public Health. She received her BA in Global Affairs from Yale University.
Steph’s clinical and research interests lie at the intersection of child development, child and adolescent psychiatry, and epidemiology. She is currently contributing to several research projects including those addressing disparities in autism care and services in Atlanta, as well as diagnostic trajectories in transgender and gender non-conforming children.
Teal Benevides, PhD, MS, OTR/L
Dr. Benevides is an occupational therapist, researcher, wife, and mother. Currently, she serves as an Associate Professor in the Department of Occupational Therapy at Augusta University, with a joint appointment in the Institute of Public and Preventive Health. Dr. Benevides received her PhD from Virginia Commonwealth University in 2014, and is a proud alumna of Thomas Jefferson University and the College of William and Mary.
Dr. Benevides is committed to fostering access to services and supports for individuals on the autism spectrum across the lifespan, which is necessary for improved health outcomes and participation in meaningful life activities. Dr. Benevides aims to document and address the most pressing medical and mental health priorities faced by the autism community in collaboration with autistic partners. As part of this work, she has sought to identify and understand priorities of autistic adults through co-developed research approaches, investigate medical care through use of large datasets, and understand and reduce racial/ethnic disparities in care for individuals on the autism spectrum in Georgia. Dr. Benevides has received numerous grants from agencies including the Health Resources and Services Administration (HRSA), American Occupational Therapy Foundation, and the Patient-Centered Outcomes Research Institute (PCORI). Dr. Benevides currently serves as an Associate Editor of the American Journal of Occupational Therapy and Deputy Editor of the journal Autism in Adulthood, as well as serving on several national workgroups for addressing health disparities in autism.
COMMUNITY OUTREACH
Content and Links Coming soon
EVENTS
BREAK THE CYCLE OF AUTISM DISPARITIES
A PANEL DISCUSSION ON AUTISM EQUALITY
SEPTEMBER 10 4PM-6PM