Delay in the Diagnosis of Autism Spectrum Disorder among Hispanic/Latino Children Academic Essay

Section 1: Foundation of the Study and Literature Review

Introduction

Autism spectrum disorder (ASD) is a developmental disorder classified by the American Psychological Association [APA], (2000) as part of a group of Pervasive Developmental Disorders (PID) that includes Asperger’s Disorder, Rett’s Disorder and Childhood Disintegrative Disorders (American Psychiatric Association, 2000). The disorder is characterized by the lack of communication skills, inability to socially interact, the presence of repetitive behavioral patterns, and other developmental and severe impairments (National Institute for Health and Clinical Excellence, 2011).

In this study, I will examine the association between, physician’s screening practices and delays in ASD diagnosis among Hispanic/Latino children. Some of the variables are physician use of screener/assessment, type of health care provider (pediatrician and family care doctor) that diagnosed the child, age when the pediatrician told parent that child had ASD, physician’s response to parent’s concern (by conducting developmental testing), and the frequency of referral to early intervention programs. AIDitionally, demographic variables such as parental ethnicity, education, and income will be studied to determine if all these factors can also contribute to the delay in the diagnosis of ASD among the Hispanic/Latino population. I will extract archived data from the National Data Resource Center for Child and Adolescent Health Survey of Pathways to Diagnosis and Services (Pathways) from 2011. The Pathways survey was conducted as a follow-up to the National Survey of Children with Special Health Care Needs (NS-CSHCN) piloted during the years 2009 through 2010. The Data Resource Center (DRC) is a national non-profit data resource that provides access to children’s health data. The National Center for Health Statistics at the Centers for Disease Control and Prevention and The Federal Maternal and Child Health Bureau (MCHB) directed the 2009 survey which was later integrated into the National Survey of Children’s Health.

Researchers from the Centers for Disease Control and Prevention stated that 1 in 68 children are diagnosed each year with ASD (CDC, 2015). ASD can affect all ethnic groups but is twice more frequent among boys than girls (Mandell, et al, 2009). The American Academy of Pediatrics (AAP) suggests that pediatricians use preliminary observation and developmental screening tools at every well-child visit. Screening tests are recommended at the age of 18 and again at 24 months old (Valicenti-McDermott, Hottinger, Seijo & Shulman, 2012, as cited by Diaz, 2015). The overall goal of the study is to examine if an association exists between delays in the diagnosis of Hispanic/Latino children and physicians screening practices. Another goal is to examine if doctors are following the ASD and developmental screening guidelines recommended by the American Academy of Pediatrics (AAP). Early testing and recognition of ASD symptoms can result in better referral services and treatment for Hispanic children. The investigation could also help provide Hispanic families and their children with better access to diagnostic and intervention services which are crucial to the improvement of children’s communication, learning and social skills.

The ASD study also has the potential to produce positive social change by increasing awareness of the barriers Hispanic families encounter when seeking early diagnosis of ASD and referral services for their children. It could help clinicians better understand the importance of using cultural-sensitive screening and the need to adapt these tests to the Spanish speaking population. Primary care physicians and pediatricians can make a difference in the lives of Hispanic children by following the AAP recommended guidelines and administering the proper screening tools at 18 and 24 months of age at every well-child visit (American Academy of Pediatrics, 2016).

I will examine, physician’s screening practices and the frequency of referral to early intervention services to determine the possible contributors to the delay in the diagnosis of ASD among the Hispanic/Latino population. AIDitionally, parental socio-demographics factors that can contribute to delays in ASD diagnosis, referral and outcomes will also be examined. Secondary data will be extracted from the National Data Resource Center for Child and Adolescent Health, National Survey of Children with Special Health Care Needs (NS-CSHCN) from 2011.

Problem Statement

Autism Spectrum Disorders (ASD) are a mixed group of disorders characterized by the presence of repetitive behaviors, a marked impairment of the children’s receptive language, and the inability to socially interact (Miles, 2011). Children who develop ASD often have difficulties communicating, may not display selective focus, and might not show interest in playing with other children (Zwaigenbaum, et al., 2015). Studies conducted by the Centers for Disease Control and Prevention (CDC, 2015) during 2010 show that 1 in 68 children have been diagnosed with Autism Spectrum Disorder (ASD). Also, CDC studies found that the median age of the first evaluation for Hispanic children was 46 months compared to white (43, p<0.01) and black children (44, p<0.05). The CDC study results indicated a significant difference in mean among the different groups (CDC, 2014). The American Academy of Pediatrics recommends the use of diagnostic ASD-specific instruments at 18 and 24 months of age in combination with developmental screening and surveillance (Zwaigenbaum, et al., 2016). Despite the AAP recommendations most ASD diagnosis take place at age 4 or even later limiting the opportunities for children with ASD to receive services and early behavior-based therapies that can improve their social functioning and communication skills (CDC, 2016). Early intervention and timely referral to treatment can help improve the children’s development and prepare them for school (CDC, 2016). Jin (2016), stated that ASD diagnosis at a young age ensures that intervention and treatment options are provided earlier and therefore, may lead to better health outcomes compared to a late diagnosis. Regardless, there are racial disparities in the diagnosis of ASD. Delays in the diagnosis of autism spectrum disorder will put Hispanic/Latino children in a disadvantaged position compared to other racial/ethnic groups. In my study, examining differences in age at the time of diagnosis, race/ethnicity, parental education and socioeconomic status will help determine if these factors may be associated with the delay in the diagnosis of ASD among the Hispanic/Latino population. AIDitionally, I will examine factors such as physician’s screening practices, response to parent’s concern, and the frequency of referral to early intervention programs. Past authors and researchers focused on language barriers, cultural influences, and healthcare providers. Consequently, my study will focus on identifying physicians’ practices (pediatricians and family practice doctors) and how these cancontribute to the delays in the diagnosis of ASD among the Hispanic /Latino children. Barriers to ASD screening, limited information on the accuracy of screening and appropriate referral practices adopted by pediatricians, combined with the lack of studies on the best age to screen for ASD are some of the gaps identify through the literature review. Purpose of the Study My study is a cross-sectional quantitative study to explore pediatricians’ screening practices and how these factors may be associated with the delay in ASD diagnosis observed in the Hispanic/Latino children. Primarily, the study will assist in determining Hispanic/ Latino children’s age at the time of diagnosis (diagnosed by primary care physicians or pediatricians as having ASD between the ages of 18 to 24 months) this will be the dependent variable. Pediatricians screening practices will be my independent variable. Research Questions and Hypothesis What is the association between physicians’ screening practices and delays in ASD diagnosis among Hispanic/Latino children? H0 Pediatrician’s screening practices will not have an effect on age of ASD diagnosis among Hispanic/Latino . H1 Pediatrician’s screening practices will have an effect on age of ASD diagnosis among Hispanic/Latino children. Quantitative data will be analyzed by the use of descriptive statistics and by inferential statistics. Descriptive statistics will include measures of central tendency ((mean, median, mode and mode) and can be used to describe and understand the predictor, confounding and outcome variables within the sample constructed (Nicholas, 2006). Also, inferential statistics such as chi-square (to test the association between two variables), T-test (to compare means), and logistic regression will be used in the study. A Chi-square or the T-test can give us the probability that the results of the analysis of the sample are representative of the selected population. The logistic regression is the best method to predict answers such as yes or no in a survey; it will be used in the study to look at ethnicity, education, and gender (About Education, 2015). Nature of the Study This study is a cross-sectional quantitative study that involves the analysis of archived data. Data will be extracted from the Data Resource Center for Child and Adolescent Health, National Survey of Children with Special Health Care Needs (NS-CSHCN). Authors Cheng & Phillips (2014) referred to the secondary analysis of existing data as a cost-effective popular method that can aIDress new research questions. To obtain information about the missing data for each one of the variables is important to run frequency tables and the cross tabulation for all variables of interest. AIDitionally, recoding the original variables and storing in a new dataset is necessary but the original datasets cannot be changed in any way (Cheng & Phillips, 2014). In this study, my primary objective is to explore possible associations between physician’s practices, and delays in the diagnosis of ASD among Hispanic/Latino children. The study will help in the identification of factors that could be associated with diagnosis timing and practices. The study will assist in determining Hispanic/ Latino children’s age at the time of diagnosis (diagnosed by primary care physicians or pediatricians as having ASD between the ages of 18 to 24 months) this will be the dependent variable. Pediatrician’s (including primary care physicians) screening practices will be my independent variable. Variables of Quantitative data will be analyzed by the use of descriptive statistics including, mean, median, and mode. These measures of central tendency are used to describe the values of a predictor, confounding, and the outcome variables within a sample (Research Engineer, 2015). Also, inferential statistics such as chi-square, T-test, and logistic regression will be used in the study. A Chi-square or the T-test can give us the probability that the results of the analysis of the sample are representative of the selected population. The logistic regression is the best method to predict answers such as yes or no in a survey; in my study, it will be used to look at ethnicity, education, and gender (About Education, 2015). Participants and Source of Information The population and source of information for the cross-sectional study will be selected from the datasets provided by the Data Resource Center for Child and Adolescent Health, National Survey of Children with Special Health Care Needs (NS-CSHCN). The NS-CSHCN contains data on access to special health care services, children’s emotional, physical and behavioral health, and the influence of children’s chronic condition(s) on the family. The National surveys contain data from between 38,000 to 40,000 people in the United States. Also, the state level subgroups data includes family structure, age, race/ethnicity, and household income (Child Health Data, 2016). Records will be reviewed, and data from the State of Georgia state will be extracted to look at some of the socio-demographic variables from Hispanic/Latino children between the ages of 18 and 24 months (e.g., age at diagnosis, ethnicity, gender).Also, Pediatricians and Primary Care Physician’s screening practices (use of the developmental test, referral to specialists, response to parent’s concern, etc.) will be explored to determine if there’s a possible association between delays in ASD diagnosis and Pediatrician’s screening practices. My interest is to examine data from the state of Georgia due to the large number of Hispanic/Latino immigrants that live in the state. According to the US Census Office in 2000 only 435,227 Hispanics lived in the state of Georgia. In 2010, the number of Hispanics in Georgia increased to 853,689 (US Census, 2011). Literature Search Strategy A body of literature exists related to autism spectrum disorders, but there’s limited information regarding cultural competency and screening issues found at the time of testing Hispanic/Latino children for autism spectrum disorder. Therefore, the need to research and generate new understanding of the kind of problems commonly encountered by Hispanic families at the time of seeking diagnosis and treatment for their children’s developmental problem. Most of the resources and information found during my research were located in the Walden library Home Page. To obtain peer-reviewed articles related to autism spectrum disorders I searched various Walden University Health Science databases such as CINAHL Plus with Full Text, PubMed, Medline with Full Text, Science Direct, and many others. Due to the limited information found, government agencies such as the Centers for Disease Control and Prevention (CDC) and The National Institutes of Health (NIH) were searched and information extracted from these two sites. AIDitionally, data from Autism Speaks (2015) was selected since this website contains updated information about autism spectrum disorder. Many of the articles revised were found under the References section of some of the peer-reviewed articles related to autism. Some of the search terms I used were Autism, ASD Prevalence, Autism Spectrum Disorder, ASD diagnosis, Autism screening tools, ASD diagnosis and Hispanic minorities, Autism diagnosis among Hispanic/Latino children, Disparities in ASD diagnosis, etc. The publication date ranges for peer review articles used 2011 through 2016. Databases excluded included those related to economic evaluations of medical treatments, drugs, or genetic studies. Literature Review Barriers to Early ASD Diagnosis The term autism spectrum disorders(ASD) was first used to describe self-absorbed adults suffering from schizophrenia who preferred to be in their world (Autism Epicenter, 2008-2011). In recent years, experts discovered that autistic people were not able to process information about themselves, had difficulty engaging in social interaction, and could not recognize their feelings and thoughts as well as those of others (Ennis-Cole, Durodoye, & Harris, 2013). According to the Center for Disease Control and Prevention (CDC, 2010), the incidence of children with ASD is rising and may be due to the increased awareness of the condition among clinicians and medical professionals. Ennis-Cole, Durodoye, and Harris (2013) attributed the increased in ASD numbers to the new standards specified in the Diagnostic and Statistical Manual of Mental Disorders, fourth edition, text revision (DSM-IV-TR; APA, 2000). Studies conducted by Ennis-Cole, Durodoye and Harris during 2013, shows that the individual perspectives of culture combined with parent’s perceptions of autism diagnosis can play a significant role in the diagnosis of autism. The authors emphasized the need for professionals to use multicultural competencies such as appropriate skills, personal awareness, cultural knowledge, and also learn to understand autism from the parent’s perspective (Ennis-Cole, Durodoye & Harris, 2013). Zuckerman and colleagues (2014) conducted qualitative interviews with parents of Latino children who had a previous diagnosis of ASD. In the study, the parents reported that they did not have adequate knowledge about ASD and in fact, some said that they still did not understand what it was. Others indicated that the stigma associated with mental health and disability were a limitation to early diagnosis. Also, limited English proficiency made the process of making appointments difficult. Others cited complexities and lack of trust in the health care system and traditional male gender roles as some of the factors that led to a delay in diagnosis. Ryn (2007) investigated health provider’s (physicians and other medical practitioners) behavior and its role in contributing to ethnic disparities and determined that this field has continued to be largely unexplored (Van Ryn, 2007). In another study, Zuckerman, Lindly and Sinche (2015) compared the parental concerns, timeliness of diagnosis and provider response between ASD and intellectual disability/developmental delay (ID/ID). The researchers found that parents of children with ASD were more likely to receive reassurances instead of proactive response than the parents of children with ID/ID. The researchers also observed that active responses from the healthcare provider had the effect of shorter delays in ASD diagnosis. Healthcare providers (e.g., pediatricians and family practitioners) were also found to contribute significantly to delays in ASD diagnosis in other studies. Zuckerman, Mattox, Donelan and colleagues (2013) conducted a study to determine how primary care doctors and pediatricians may modify ASD diagnosis in Latino and white families. They observed that only 10% of the practitioners offered general developmental guidelines and ASD screening procedures in Spanish. Also, the researchers reported that access to developmental specialists was the most common barrier to ASD identification in Latinos (Zuckerman, et al., 2013). Williams and colleagues (2013) investigated the barriers to accessing services for children with language delays and behavioral difficulties. They observed that less than half of Spanish-speaking callers received an appointment for a referral to a mental health agencies or schools. According to Huntington and colleagues (2015), cultural beliefs may determine the willingness of parents to voice their concerns about developmental or behavioral difficulties in their children. These sentiments are shared by Ennis-Cole and colleagues (2013) who discuss the impact of culture on autism diagnosis and treatment. According to the researchers, parents from minority groups may assume that language delays and lack of social interactivity are a temporary phenomenon or a normal process. Hence, they may take the time to notice ASD symptoms such as lack of eye contact and lack of pointing or imitation (Ennis-Cole, 2013). From the literature reviewed, culture, language barriers, parental education, and healthcare provider (e.g., pediatricians and family practitioners) response are implicated in the delay of ASD diagnosis. In this study, the focus will be on the pediatrician’s and parents’ characteristics and demographics not covered by past researchers. These features include factors that may increase the difficulty and diagnosis of ASD such as medical practitioner’s clinical behaviors and parent’s demographics. Parental demographics such as ethnicity, education level, and income will be explored to determine if these family-level factors may be associated with the delay in ASD diagnosis. Research Gaps Past authors and researchers focused on language barriers, cultural influences, and healthcare providers. Consequently, in this study, I will focus on identifying physicians’ screening practices and parent’s demographic factors that contribute to the delays in the diagnosis of ASD among the Hispanic /Latino children. Barriers to ASD screening, limited information on the accuracy of screening and appropriate referral practices adopted by pediatricians, combined with the lack of studies on the best age to screen for ASD are some of the gaps that I identified through the literature review. Areas with few studies and information also include the analysis of pediatrician’s demographics and characteristics such as experience in ASD diagnostic tools and knowledge of ASD guidelines, and how these factors have been implicated in exacerbating this delay. According to Huerta & Lord (2012) since the publication of the American Academy of Pediatrics screening guidelines, the identification of ASD has improved. However, a significant number of children continue to be undiagnosed, and others are likely to be identified by educational programs (Huerta & Lord, 2012). AIDitionally, only a few studies have been conducted in the area of identification of early signs of autism spectrum disorder, the recommended age and aIDed value for screening, comparison of instruments, characteristics of the child and family-level factors. Definitions Assumptions Scope and Delimitations Summary and Significance of the Study The results of the study may contribute to the better understanding of screening practices adopted by pediatrician’s (including primary care physicians) that could be associated with the delay in ASD diagnosis among Hispanic/Latino children. The investigation will also contribute to a more understanding of the factors that may be barriers encountered by physicians and pediatricians at the time of testing and diagnosis of Hispanic/Latino children. By examining pediatrician’s screening practices, a possible association between these factors and delays in the diagnosis of Hispanic/Latino children may be found. The study can also contribute to the understanding and identification of inconsistencies in the use of ASD developmental screening tools among the Hispanic/Latino families. Conclusion In conclusion, the study could impact the way services are offered and could increase awareness of the different factors and barriers Hispanic families encounter when seeking ASD diagnosis. Early diagnosis will give Hispanic children the opportunity to receive early ASD treatment and help them reach the best outcome possible (Autism Speaks, 2015, as cited by Diaz, 2015). Early diagnosis is important to help public health officials, community development experts and social workers develop ASD diagnosis guidelines and practices that are sensitive to the culture and lifestyle of Hispanic/Latino parents. Past studies have looked mainly at Hispanic/Latino parents’ demographics and their association to early diagnosis of developmental problems. My research will extend existing knowledge and will help uncover critical areas of developmental screening practices that were not explored by previous researchers. AIDitionally, the results of the study may help to guide the development of culture-sensitive screening procedures, tools, and guidelines to ensure that Hispanic/Latino communities benefit from early diagnosis, intervention, and treatment. References About Education. (2015). Linear regression analysis. Retrieved from http://sociology.about.com/od/Statistics/a/Logistic-Regression.htm Alegría M, Canino G, Pescosolido BA. In: A socio-cultural framework for health services disparities: illustrating the case of mental health and substance abuse; in Comprehensive Textbook of Psychiatry. Sadock BJ, Sadock VA, Baltimore Ruiz P, editors. Wolters Kluwer Health: Lippincott Williams and Wilkins; 2009. Alegría, M., Pescosolido, B. A., Williams, S., & Canino, G. (2011). Culture, race/ethnicity, and disparities: Fleshing out the socio-cultural framework for health services disparities. In B.A. Pescosolido et al. (Eds.), Handbook of the Sociology of Health, Illness, and Healing: A Blueprint for the 21st Century (pp.363-382). New York, NY: Springer Science & Business Media. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders, (Revised 4th ed.). Washington, DC: Author. Autism Speaks. (2015). BSRC response to USPSTF calls for more research on universal autism screening. Retrieved https://www.autismspeaks.org/science/science-news/bsrc-response-uspstf-call-more-research-universal-autism-screening Centers for Disease Control and Prevention. (2014). MMWR Weekly: Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010. Retrieved from http://www.cdc.gov/mmwr/pdf/ss/ss6302.pdf Centers for Disease Control and Prevention. (CDC, 2015). Autism and Developmental Disabilities Monitoring (AIDM) Network. Retrieved from http://www.cdc.gov/ncbIDd/autism/aIDm.html Centers for Disease Control and Prevention. (2016). Data & Statistics. Retrieved from http://www.cdc.gov/ncbIDd/autism/data.html Ennis-Cole, D., Durodoya, B., & Harris, H. (2013). The impact of culture on autism diagnosis and treatment: Considerations for counselors and other professionals. The Family Journal: Counseling and Therapy for Couples and Families, 281-287. Huntington, N., Horan, K., Epee-Bounya, A., & Schonwald, A. (2015). Developmental Screening with Spanish-Speaking Families in a Primary Care Setting. Clinical Pediatrics. Jin, J. (2016). Screening for Autism Spectrum Disorder. Journal of the American Medical Association. 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(3), 493–498. http://doi.org/10.2105/AJPH.2007.131243 National Institute for Health and Clinical Excellence. (2011). Autism: Recognition, Referral and Diagnosis of Children and Young People on the Autism Spectrum. London (United Kingdom): Retrieved from http://www.ncbi.nlm.nih.gov/books/NBK92985/ Pescosolido, B., Alegria, M., Williams, S. & Canino, G. (2009.) “A Socio-cultural Framework for Health Services Disparities: Illustrating the Case of Mental Health and Substance Abuse” Paper presented at the annual meeting of the American Sociological Association Annual Meeting, Hilton San Francisco, San Francisco, CA Online. 2014-11-29. Van Ryn, M. (2002). Research on the provider contribution to race/ethnicity disparities in medical care. Medical care, 40(1 Suppl), I140. Valicenti-McDermott M, Hottinger K, Seijo R, et al. (2012) Age at diagnosis of autism spectrum disorders. Journal of Pediatrics 161 (3): 554–556. Williams, M., Perrigo, J., Banda, T., Matic, T., & Goldfarb, F. (2013). Barriers to Accessing Services for Young Children. Journal of Early Intervention. Zuckerman, K., Lindly, O., & Sinche, B. (2015). Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis. Journal of Pediatrics, 1431-1439. Zuckerman, K., Mattox, K., Donelan, K., Batbayar, O., Baghaee, A., & Bethell, C. (2013). Pediatrician Identification of Latino Children at Risk for Autism Spectrum Disorder. Pediatrics. Zuckerman, K., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaids, C. (2014). Latino Parents’ Perspetives of Barriers to Autism Diagnosis. Academic Pediatrics, 301-308. Zwaigenbaum, L., Bauman, M., Choueiri, R., Fein, D., Kasari, C., Pierce, K., Yurmiya, N. e. (2015). Early identification and interventions for Autism Spectrum Disorder: Executive summary. Pediatrics. Zwaigenbaum, L., Bauman, M., Fein, D., Pierce, K., Buie, T., Davis, P., Newschaffer, C., Robins, D., Wetherby, A., Choueiri, R., Kasari, C., Stone, W., Yirmiya, N., Estes, A., Hansen, R., McPartland, J., Natowicz, M., Carter, A., Granpeesheh, D, Mailloux, Z., Smith S. & and Wagner, S. (2016). Early Screening of Autism Spectrum Disorder: Recommendations for Practice and Research. The American Academy of Pediatrics. DOI: 10.1542/peds.2014-3667D. Pediatrics 2015;31136; S41 find the cost of your paper Is this question part of your assignment? Place order Posted on May 24, 2016Author TutorCategories Question, Questions

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