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Autism in South Texas 2010 - 2011

Environmental Public Health Leadership Institute Fellow:

Beatriz Tapia, M.D., M.P.H. Faculty Associate South Texas Environmental Education and Research (STEER) Program Department of Family & Community Medicine Regional Academic Health Center 2102 Treasure Hills Boulevard Harlingen, Texas 78550 956/365-8820 [email protected]

Mentor:

Charles H. Henry, R.S., M.P.A. Environmental Administrator Sarasota County Health Department 1301 Cattlemen, Building A Sarasota, Florida 34232 (941) 861-6134 Cell (941) 228-2548 [email protected]

Acknowledgements:

Claudia S. Miller, M.D., M.S. Assistant Dean, MD/MPH Program Vice Chair, Community Medicine, Department of Family and Community Medicine Director, South Texas Environmental Education and Research (STEER) Program University of Texas Health Science Center at San Antonio

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

Raymond F. Palmer, Ph.D. Associate Professor, Department of Family and Community Medicine University of Texas Health Science Center at San Antonio Patsy Bortoni Project Coordinator, Environmental Medicine Education Program Department of Family and Community Medicine University of Texas Health Science Center at San Antonio Regional Academic Health Center, Harlingen Campus Lynne Parsons Heilbrun, M.P.H. Faculty Associate, Autism Research Coordinator Department of Family and Community Medicine University of Texas Health Science Center at San Antonio Roger B. Perales, M.P.H., R.S. Faculty Associate, Department of Family and Community Medicine Assistant Director, South Texas Environmental Education and Research (STEER) Program University of Texas Health Science Center, Laredo Regional Campus

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

EXECUTIVE SUMMARY: Symptoms of autism and autism spectrum disorders (ASD) are generally noticed by the age of 18-24 months. To date no specific clinical biomarkers exist. Consequently, diagnosis is based on a set of well-defined behavioral and neuropsychological assessments1. Because of the high variability in behaviors, biologic correlates, and response to treatment, varied sub-types of autism are suspected; each may have a different etiology and response to treatment2, 3. Societal costs of ASD are estimated at $3.2 million over the lifetime of the affected individual, with much of the direct costs of treatment borne by the state through Medicaid expenditures and by local school districts for special education. Additional indirect costs include lost productivity of both the individual and the family4. Autism prevalence has continued to increase in the U.S. over the last 20 years2, with prevalence currently estimated at 1% of U.S. children4. This increase is attributed in part to greater awareness of the condition among health care professionals, younger aged children being diagnosed, changes in diagnostic criteria, and other artifacts5. However, these and other key artifacts have been found to explain only a minor portion of the increase in ASD, so the extent to which the continued rise represents a true increase in incidence remains unclear6,7. Studies have shown that the prevalence of autism is lower among Hispanics8-11and in Texas counties with low socioeconomic status12. These findings strongly suggest that autism in Hispanics is poorly understood and may often be left undiagnosed, with the result that Hispanic children will be less likely to receive early interventions, which could improve long-term quality of life for them, their families, and the community. Improved understanding of autism in the Hispanic community could have a major impact on ASD ascertainment and service delivery in this population. This project seeks to support the creation of a Hispanic Autism Research Center in the South Texas Region. INTRODUCTION/BACKGROUND: Researchers believe that autism rates may be linked to many genetic and environmental factors, including protective or susceptible genes. Despite the alarming increase in autism rates in the U.S., South Texas data demonstrates a lower rate than the national average 11-12. Hispanics are the fastest-growing sector in the U.S. population, and little is known about autism in this population at the national level. Hispanics in Texas are younger than the average population and tend to have higher fertility rates. Therefore, threats to the health of children may have disproportionate effects on Hispanics. Hispanic children experience three times the poverty rate of Non-Hispanic Whites and have 2-3 times lower access to health services13. Specific to autism, Hispanic children are diagnosed about one year later than Non-Hispanic Whites (7.4 years old vs. 6.3 years old) and have twice as many healthcare provider visits preceding the first autism diagnosis (8.3 visits vs. 4.1) 14. Research strongly suggests that to foster better prognosis and improved outcomes, the optimum age for diagnosis is less than 3 years, making access to care a critical factor. Because little is known about environmental risk associated with autism in general, and because even less is known about autism among Hispanics, continued research could have a tremendous impact on the science, the health of the Hispanic community, and the health of the wider community.

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

The maps in Figure 1 depict the predominance of the Mexican-American population in the study region. Hispanics specifically Mexican-Americans will be the target population under study, as directed by Principal Investigator Raymond Palmer, PhD and Co-Investigator Claudia Miller, MD, MS.

Figure 1. Percent of Hispanics in Texas and study location

Problem Statement: Why, despite increased rates of autism and autism spectrum disorders (ASD) at the national level, does the South Texas region lack early diagnosis and intervention for children who suffer from autism or ASD? While research indicates a lower prevalence of autism and ASD in Hispanics, we suggest that autism among Hispanic populations is insufficiently understood and may be undiagnosed. If we ignore the origin of the lower rates, we may miss critical interventions and resources for families of children with autism in the South Texas region, which enhance long term quality of life at the personal, family, and community levels.

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

Figure 2: Behavior Over Time Graph

Behavior Over Time Graph: Figure 2 is part of the Systems Thinking development for this project. Key variables of the problem statement were identified and have been tracked over time. As national autism rates have increased, the level of interest in autism has also had a steady and parallel increase, hence influencing autism research. A study in 2007 reported an increase in funding for autism research grants in the U.S. from 1997-200615. The current research trend is the shift from basic science to clinical and translational research. Despite current data, South Texas has historically been known to have limited resources for healthcare services and management. Thus it is not unexpected to find a limited number of diagnosticians and intervention centers in deep South Texas. The lack of diagnosticians and intervention centers in the region suggests underreporting of autism and ASD in the local population.

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

Causal Loop Diagrams and applicable Archetypes: Limit to Success: Autism in South Texas

It is apparent that rates of autism in South Texas are low. This could be an artificial rate due to the under-diagnosis of children with this disorder. Because of the already taxed public school and public health systems (the primary interventions centers for autism), and because prevalence in South Texas is perceived to be relatively low, children with ASDs have not received the same diagnosis and intervention benefits as those in most of the nation. Early diagnosis and intervention for children with autism is important, because those measures can provide the desired outcomes of better social skills, health care treatment and control of children with autism. The long-term effects of not providing research, diagnosis and intervention for individuals with ASD will result in children who have more healthcare needs, and additional costs to parents and the healthcare system.

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

Limit to Success intervention: Autism in South Texas

To shift the current model to increase diagnoses and interventions for children with autism and ASD in South Texas, we need to collect new data in order to establish actual autism rates, which may or may not document the need to build an effective infrastructure. In order to do this, we will identify the limiting resources in our area (awareness, intervention center and diagnosticians) and address these at the local, state and national level.

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

10 Essential Environmental Health Services:

Figure 3: Osaki, Ten Essential Public Health Services :

This project aligns with three of the ten essential environmental public health services (figure 3) hree and several national public health goals. Essential Public Services addressed: 1. To inform, educate and empower people regarding potential environmental health risks linked to autism and ASD. We plan to develop a Hispanic autism research center in the South Texas area which will serve as a resource center for stakeholders. 2. To link individuals to adequate healthcare services for children diagnosed with autism or ASD. We plan to have a designated staffer responsible for tracking calls and service referral for all inquiries. 3. To conduct research We plan to conduct a small-scale pilot study that will provide a research. preliminary analysis of potential gene-environmental links to autism and the barriers to diagnosis and intervention in the South Texas region. Based on these results, we results will focus or redirect research efforts to expand upon the uniqueness of autism in the Hispanic population.

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

National Goals Supported: Healthy People 2020 objectives Early and Middle Childhood · Increase the percentage of children with disabilities, birth through age 2, receiving early intervention services in home- or community-based settings in South Texas Quality of Life and Well-Being · Early diagnosis and intervention will provide better quality of life for children with autism and their families. National Strategy to Revitalize Environmental Public Health Services Goal II: Research Support ­ The intent of this goal is to enhance environmental public health services. · Our intention for this project is to engage and strengthen community support for community-based environmental public health research in South Texas. Goal IV: Communication and Market ­ Improve communication and information sharing among environmental public health agencies, communities, strategic partners and other stakeholders and better market environmental health services to policymakers and the public. · We will develop specific informational materials to help investigate the links between autism and environmental factors.

Goal VI: Create Strategic Partnership ­ Foster interactions among agencies, organizations and interests that influence environmental public health services. · Collaboration with other institutes, local providers, and early development centers will enhance the success of the pilot project.

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

Project Logic Model:

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

PROJECT OBJECTIVES/DESCRIPTION/DELIVERABLES: Action Plan: Creation of a Hispanic Autism Research Center will address the limitation of diagnoses and interventions for children with autism and ASD in South Texas. Program Goal: To improve early diagnosis and intervention for children who suffer from autism and ASD in South Texas. Health Problem: Data show an average of 1 in 110 U.S. children have autism or an ASD16. To date, data from South Texas demonstrates a lower rate in the region than the national average. Outcome Objective: By December 2011, a representative sample of families will be recruited to investigate gene-environment interactions in the South Texas region, where Hispanics are more than 80% of the population. The preliminary data analysis will help researchers identify the factors (environmental, social, behavioral, cultural, etc.) that may have an impact on the actual current rates of autism in South Texas. Determinant: An increase in the number of early interventions that result from autism diagnoses per year. Impact Objective: By June 2012, there will be a significant increase in the availability of diagnoses and early interventions, which will enhance development and educational outcomes for children diagnosed at an appropriate age. Contributing Factors: The increase in rates of autism in the last decade The limited number of diagnosticians in the South Texas region The lack of intervention centers and services in the South Texas region The lack of autism research in Hispanics at the local and national level Process Objectives: Ongoing funding for the establishment of a Hispanic Autism Research Center in the South Texas region to investigate gene-environment interactions in autism and ASD. METHODOLOGY: Event: The creation of a center will focus on studying autism and ASD in Hispanics in South Texas. Activities: An initial meeting with local researchers, diagnosticians and autism awareness groups to consider the need for a research center in the community Stakeholders who did not attend first meeting are being approached individually by project members

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

Sponsor key personnel for autism training at the University of Michigan, the only national site recognized to provide Autism Diagnostic Observation Schedule (ADOS) training. Event: Pilot study recruitment at community centers and clinics Activities: Complete Institutional Review Board (IRB) requirements for pilot study Start participant enrollment Conduct preliminary analysis at 50% enrollment Present preliminary findings to autism stakeholders Further researchers' and stakeholders' interests

EXPECTED OUTCOMES: Based upon pilot study findings, we will have a better understanding of the true rates of autism among Hispanics in South Texas. We expect to increase the workforce infrastructure of diagnosticians and interventions services available to Hispanics in South Texas. Increased accessibility to ASD ascertainment and early intervention can increase quality of life and wellbeing for Hispanic children with autism and their families. NEXT STEPS: We will share data and specimens with the leading NIEHS/NIH-funded researcher on environmental factors in autism. This will contribute to the national database and allow us to characterize (phenotype) and compare cases among South Texas Hispanics with those of California Hispanics as well as Non-Hispanic Whites and controls. We will continue work with community partners to reach out to the Hispanic community, directly improving detection and, through referral, treatment of autism.

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

LEADERSHIP DEVELOPMENT OPPORTUNITIES:

Beatriz Tapia, M.D., M.P.H. The Environmental Pubic Health Leadership Institute fellowship has been truly beneficial in the advancement of my personal and professional career. The Institute has a well-structured program that helps one identify strengths and weaknesses based on personality traits, managerial skills and leadership traits to modify and build on, giving you all of the necessary tools to be a successful leader. This is further developed by the Individual Development Plan (IDP) and encouraged by the IDP coach. This information has proven to be invaluable; it would have been very difficult and probably much later in my professional career to see this as a critical need to be a truly well-rounded leader. EPHLI has given me a step up in advancing my future personal and professional goals. I am truly grateful to have been part of EPHLI cohort VI. I have learned much, not only for the institution itself but from my colleagues. They have provided me with an array of resources, critical feedback and insight from different perspectives that have positively influenced my vision of the future of environmental public health. Last but not least, an infinite thank-you to my mentor and teammate who have accompanied me on this amazing and transformative journey of professional growth.

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

ABOUT THE EPHLI FELLOW

Beatriz Tapia, MD, MPH, is Faculty Associate of the UT Health Science Center San Antonio at the Regional Academic Health Center in Harlingen, Texas (UTHSCSA). She teaches and co-coordinates an environmental medicine elective for the South Texas Environmental Education and Research Program (STEER). Dr. Tapia is a native of Chicago, Illinois. She attended Autonomous University of Puebla in Mexico, where she received her MD, and the Bloomberg School of Public Health at Johns Hopkins University (JHSPH), in Baltimore, Maryland, where she received her Master's in Public Health. In addition to her MPH, Dr. Tapia trained in occupational health and health disparities at the JHSPH. In the summer of 2005, Dr. Tapia was among the first group of interns from the Hispanic-Serving Health Professions Schools (HSHPS)/Centers for Disease Control and Prevention (CDC) to participate in the STEER Program. In March 2006, she joined STEER as Faculty Associate in the Department of Family and Community Medicine at the UTHSCSA. STEER is a four-week elective for medical students, residents and other healthcare professionals in training (MD/MPH, nursing, physician assistants, dental, etc.). Its mission is to unite medicine, public health and environmental health. Dr. Tapia serves as a mentor to HSHPS/CDC interns and fellows on a variety of environmental and public health topics since the summer of 2006. Dr. Tapia is a strong advocate for the medically underserved; she continuously provides environmental and public health education to promotoras (lay healthcare workers), public health nurses and community centers. She is active in numerous border health organizations, and was recently appointed to be a member of the epidemiology and environmental education subcommittee of the United States ­ México Border Health Commission. She also served on the expert advisory group for Border 2012, which was charged with updating a training module of the Physician's Guide to Pesticide Poisoning for border physicians.

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

REFERENCES 1. Lord, C, Rutter, M, & Le Couteur, A. Autism Diagnostic Interview--Revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. J Autism Dev Disord. 2004; 24-659-685. 2. Bertoglio K, Hendren RL. New developments in autism. Psychiatr Clin North Am. 2009; 32(1):1-14. 3. Hendren RL, Bertoglio K, Ashwood P, Sharp F. Mechanistic biomarkers for autism treatment. Med Hypotheses. 2009; 73(6):950-4. 4. Ganz ML. The lifetime distribution of the incremental societal costs of autism. Arch Pediatr Adolesc Med. 2007; 161(4):343-9. 5. King M, Bearman P. Diagnostic change and the increased prevalence of autism. Int J Epidemiol. 2009; 38(5):1224-34. 6. Hertz-Picciotto I, Delwiche L. The rise in autism and the role of age at diagnosis. Epidemiology. 2009; 20:84­90. 7. Nassar N, Dixon G, Bourke J, Bower C, Glasson E, de Klerk N, Leonard H. Autism spectrum disorders in young children: effect of changes in diagnostic practices. Int J Epidemiol. 2009; 38(5):1245-54. 8. Centers for Disease Control and Prevention. Parental Reports of Diagnosed Autism in Children aged 4-17 Years-United States, 2003-2004. Morbidity and Mortality Weekly Report, May 5, 2006. Centers for Disease Control and Prevention, Department of Health and Human Services 9. Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders -- Autism and Developmental Disabilities Monitoring Network, Six Sites, United States, 2000, Surveillance Summaries, Morbidity and Mortality Weekly Report 2007, 56 (No. SS-1). 10. Croen L, Grether J, Selvin S. Descriptive Epidemiology of Autism in a California Population: Who Is at Risk? J Autism Dev Disord., 2002; 32(3):217-224. 11. Palmer RF, Walker T, Mandell D, Bayles B, Miller CS. Explaining low rates of autism among Hispanic schoolchildren in Texas. Am J Public Health. 2009; 100,270-2 12. Palmer RF, Blanchard S, Jaen C, Mandell S. The association between school district resources and identification of children with autistic disorder. Am J Public Health. 2005; 95(1):125-130. 13. Zambrana RE, Logie LA. Latino child health: need for inclusion in the US national discourse. Am J Public Health. 2000; 90(12):1827-33. 14. Mandell DS, Listerud J, Levy SE, Pinto-Martin JA. Race differences in the age at diagnosis among Medicaid-eligible children with autism. J Am Acad Child Adolesc Psychiatry. 2002; 41(12):1447-53. 15. Singh J, Illes J, Lazzeroni L, Hallmayer, J. Trends in US autism research funding. J Autism Dev Disord. 2009; 39:788-795.

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

16. Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders --- Autism and Developmental Disabilities Monitoring Network, United States, 2006. Morbidity and Mortality Weekly Report, December 18, 2009 / 58(SS10); 1-20.

2010­2011 Fellow Project

National Environmental Public Health Leadership Institute

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