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Running head: AUTISM SPECTRUM DISORDER: DIAGNOSES AND SYMPTOMS 0

Autism Spectrum Disorder: Diagnoses and Symptoms Management

Ra

Capella University

Capstone

April 2020

Abstract

Do Latino Children that get diagnosed for Autism Spectrum Disorder (ASD) early between 18 to 24 months manage symptoms better than Latino children who are diagnosed late after 24 months? This is the bases for the research study. The significance of the study is that it will examine cases of Latino children not only in the United States, but in Venezuela as well. This data can be used to review diagnoses and determine if being diagnosed early with ASD leads to better symptoms management. Autism Spectrum Disorder is guided by cognitive and social psychological theories. These frameworks are empirically supported behavioral orientations. Prospective participants will be identified through community outreach efforts, and partnerships with clinics and autism network partners. The scientific community will benefit from the research, as data related to the late diagnoses will be shared with necessary stakeholders.

Keywords: Autism Spectrum disorder, early diagnoses, late diagnoses, Latino children

Table of Contents

CHAPTER 1. INTRODUCTION……………………………………………………………. 5

Background of the Problem ..6

Statement of the Problem 8

Purpose of the Study 9

Significance of the Study 10

Research Questions 10

Definition of Terms 11

Research Design 11

Summary 12

CHAPTER 2. LITERATURE REVIEW…………………………………………………..…13

Theoretical Orientation for the Study 13

Review of the Literature 14

Synthesis of the Research Findings 18

Critique of Previous Research Methods 20

Summary 21

CHAPTER 3. METHODOLOGY……………………………………………………………22

Purpose of the Study 22

Research Question and Hypotheses 22

Research Design 23

Target Population and Sample 23

Procedures 25

Ethical Considerations 27

CHAPTER 4. EXPECTED FINDINGS/RESULTS…………………………………………29

CHAPTER 5. DISCUSSION………………………………………………………………...32

Implications .. 32

Methodological Strengths and Weaknesses 33

Suggestions for Future Research 34

CHAPTER 1. INTRODUCTION

Research shows that Latino children are diagnosed late for ASD. The problem is to find out if children who are diagnosed between 18 and 24 months manage their symptoms better than children who were diagnosed late which is after 24 months. Research from Moody et al., (2013) shows that Latino children are diagnosed with ASD after 24 months of age. Studies have shown that some Latino children are diagnosed for ASD at 53 months (Moody et al., 2013), which is well past the Center for Disease Control and Prevention (CDC) guidelines of diagnoses between 18 and 24 months (CDC, 2019). In contrast, white children are screened and diagnosed for ASD before 24 months of age (Becerra, Von-Ehrenstein, Heck…Ritz, 2014). Research is needed to determine if Latino children who are diagnosed early within the recommended timeframes, manage their ASD symptoms better than children who are diagnosed late.

Autism Spectrum Disorder is complex and there are still many unknowns regarding the disorder (Harris et al., 2019). Therefore, the themes surrounding ASD may vary. Social learning theoretical frameworks have assisted in identifying ways to prevent ASD diagnosing disparities by studying the children and their surroundings (Penner et al., 2013). Ethical procedures will include making sure all participants have signed HIPAA consents and are explained the parameters of the study. The standards will include adhering to the ethics code sections 8 and 9 from the American Psychological Association.

Autism Spectrum Disorder in Latino children remains significantly lower than that of White children (Moody, Harris, Zittleman, Nease, Jr., & Westfall, 2019). Latino children are also diagnosed later than the recommended timeframes (Moody, et al., 2019). ASD diagnoses may include a myriad of symptoms. This leads to questions regarding symptoms management and if children who are diagnosed early manage symptoms better than children who are diagnosed late. Screenings and diagnoses after 24 months are considered later than the norm (Montiel-Nava, Chacin & Gonzalez-Avila, 2017). The later the child is diagnosed can lead to additional symptoms or more severe symptoms (Koegel, Koegel, Ashbaugh & Bradshaw, 2013). Individuals with ASD often exhibit aggression, tantrums, and self-injury. These behaviors are often secondary symptoms that may develop if not addressed properly (Koegel, et al., 2013).

This proposal will advance the psychology field by designing a study to examine early and late diagnoses, and to determine if children who are diagnosed early manage their symptoms better. The proposal will address what is currently known about ASD diagnoses in Latino children, what is known in children who are diagnosed early and how symptoms are managed in each group. According to Amaral (2017; Moody, et al., 2019), some possible reasons for late diagnoses includes language barriers, mental health stigmas, and reduced health literacy. The results of literature reviews, health record reviews and interviews will be essential to the comparative study. The study will review early and late diagnoses and determine if being diagnosed early; as opposed to being diagnosed late, leads to better symptoms management. The study is quantitative, as it gathers opinions from parents, mental health therapists and medical records reviews. This information is then turned into statistical data that can be tracked and trended.

Background of the Study

Burnside, Wright and Poulin-Dubois, (2017) states that Autism Spectrum Disorder is a neurodevelopmental disorder. This disorder can cause deficits in a person’s personality and behavior. This relates directly to Latino children because when these children experience ASD symptoms, they may be deemed as disruptive or labeled to have a behavior problem (Moody, et al., 2019). Children who are diagnosed early may avoid many symptoms associated with ASD (Zuckerman, 2014). Many of these children are not yet diagnosed with ASD, so, there are often few supports available to assist in managing their symptoms. ASD affects each child differently and may include a range of symptoms (Amaral, 2017). If the child does not have the proper ASD diagnosis or has not been diagnosed yet. It is important to know the background of the disorder and how it directly relates to the population being studied.

There is a large discrepancy in Latino populations receiving late diagnoses for autism (Montiel-Nava, Chacin & Gonzalez-Avila, 2017), as opposed to being diagnosed on time. The timing of the diagnoses is an important factor, because this can determine the severity of the symptoms. In addition, the longevity of undiagnosed or late ASD diagnoses may make the symptoms unmanageable. So, it is very important to review how parents, school officials, physicians and other stakeholders manage the symptoms of each population. This population refers to children who are diagnosed early and children who are diagnosed late. Latino parents expressed concern regarding their child’s developmental difficulties at 17 months; however, children were not were diagnosed until 36 months later (Montiel-Nava, Chacin & Gonzalez-Avila, 2017). Latino children are diagnosed on average at 53 months (CDC, 2020). This is much later than the CDC recommended timeframes of 18 to 24 months (CDC, 2020).

As a researcher, it is important to compare the timeliness of the diagnoses and see if being diagnosed early leads to better management of ASD symptoms. Early diagnoses have been linked to improved long-term developmental outcomes (Zuckerman et al., 2014), and late diagnoses could lead to severe behavioral problems. Once early diagnoses and late diagnoses are reviewed and symptoms managements is compared, steps can be taken to design additional studies, implement interventions, and develop outreach programs for these populations. The data obtained from the study will assist Latino parents in managing their child’s symptoms and locating resources for ASD. This information will also help families make better decisions about their children’s health and could help to eliminate the stigmas around autism spectrum disorder in Latino communities.

Statement of the Problem

Managing ASD symptoms may differ in children who are diagnosed early versus children who are diagnosed late. Research support the fact that many Latino children are being diagnosed late for Autism Spectrum Disorder, (Montiel-Nava, Chacin & Gonzalez-Avila, 2017). A late diagnosis is an initial diagnosis after the recommended ASD screening of 18 months to 24 months (CDC, 2019). Many Latino children are being diagnosed after 50 months of age (Montiel-Nava, Chacin & Gonzalez-Avila, 2017). As a precautionary measure, the CDC (2020) suggests that children who has a sibling with ASD, be evaluated each year; as they might have a higher propensity for autism (CDC, 2020). Research is needed to review cases where children of early diagnoses. This research will be pivotal in determining how symptoms were managed.

The problem is that comparative data is needed to investigate whether the children who are diagnosed early with ASD manage their symptoms better than the children who are diagnosed late. Several factors have attributed to the late diagnoses, so it would be interesting to see if these late diagnoses cause a problem when trying to manage ASD symptoms. Research is needed to compare symptom management and the age of diagnoses among Latino children.

Montiel-Nava, Chacin & Gonzalez-Avila (2017) states that being diagnosed at a later age comes with additional symptoms. Some of these symptoms may include lower intelligence quotients, behavior and academic problems. Additionally, Hispanic children are often subjected to substandard care (Chlebowski, Magana, Wright & Brookman-Frazee, 2018) after receiving an ASD diagnosis. How these symptoms are managed depends on the severity of the symptoms and the support available for parents (Koegel et al., 2013).

This proposal is necessary because more research is needed to determine if there is a difference in symptoms management based on when the child was diagnosed. A carefully designed research study can ask the appropriate questions and obtain the necessary data to review symptoms management. Late diagnoses of ASD is an important issue because there are serious side effects when ASD is left untreated. The longer the child is untreated, the longer they are unable to manage their symptoms and get the care they need (Martin, Sturge-Apple, Davies & Gutierrez, 2019).

Purpose of the Study

The purpose of the study is to review early and late ASD diagnoses in Latino children and determine if children who are diagnosed early can manage their symptoms better than children who are diagnosed late. The problem deserves new research because the number of Latino children being diagnosed late with ASD continues to increase (Montiel-Nava, Chacin & Gonzalez-Avila, 2017); however, research is needed to determine if being diagnosed early lead to better management of symptoms. The average age of Latino children at age of ASD diagnosis ranged from 53.03 months to 54.38 months (Montiel-Nava, Chacin & Gonzalez-Avila, 2017). This is a major concern because these children are not receiving culturally tailored interventions (Matsuda, Brooks & Beeber, 2016). This study will design a research study to review symptoms of children who have been diagnosed early and children who have diagnosed late. There will be comparative research to determine if the children who were diagnosed early were able to manage their symptoms better than the children who were diagnosed late. Researchers must be able to capture the feelings and concerns of Latino parents and their views on autism.

Significance of the Study

The research will advance scientific knowledge because it will solicit opinions from Latino parents with autistic children. Parents of the autistic children will be interviewed to discuss the age of their child at the age of diagnosis, and if they were able to manage their child’s symptoms. The study will include children who have been diagnosed early and late. The study will rely on numbers or statistical information, the study will also focus on medical record reviews, observations, case studies. The study will add to the existing literature of ASD, as it will bring in new perspectives and examine symptoms management in depth. The inquiry is original as it will examine cases of Latino children in urban and rural areas. The study will provide evidence-based rationale and best practice models for conducting the study. This study will also focus on the feelings, actions of parents, mental health workers and children with ASD. Interviewing these stakeholders will assist with determining which group were able to manage their symptoms better than the other.

Research Question

Research question: Do Latino Children who get diagnosed for ASD early between 18 to 24 months manage symptoms better than Latino children who are diagnosed late after 24 months?

Null Hypothesis: Latino children with ASD who are diagnosed early do not manage symptoms better than Latino children who are diagnosed late.

Hypothesis: Latino children with ASD who are diagnosed early manage symptoms better than Latino children who are diagnosed late.

The underlying theme is that symptoms management is determined based on when the child was diagnosed. Additional research is needed to determine if early diagnoses leads to better management of these symptoms. The research question will be answered by a carefully designed study. The study will include surveys, review of medical records, and reviews of previous research and case studies. The data will be transferred to information by pulling out the relevant information related to the research study. Each section of the research question will be analyzed, thoroughly investigated and compared with best practice methods.

Definition of Terms

Autism Spectrum Disorder - Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behavior (National Institute of Mental Health, 2018).

Early Diagnoses- Diagnoses within 18 to 24 months.

Late Diagnoses- ASD diagnoses after 24 months.

Latino –A person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race (Aragones, Hayes, Chen, González, & Gany, 2014).

Research Design

This research design is quantitative. The research will be a descriptive research method. The study will use comparative data to determine which group manages symptoms the best. The design constructs will include case studies, medical record reviews, interviews and questionnaires. The research will be guided by approved psychology practices to ensure the validity of the study. The American Psychological Association’s Code of Ethics will be the outline for the research design and will be the guiding principles for assuring ethical research practices. The codes that apply to this study will include Section 8 Research and Publication, and Section 9 Bases for Assessments (American Psychological Association, 2010). These sections cover multiple ethic codes for researchers and how to properly conduct research and administer informed consents.

Summary

It is important to know if the timing of diagnoses make a difference in the management of symptoms. In addition, it is essential to investigate whether being diagnosed early leads to better symptoms management. Knowing that a child is diagnosed late with ASD does not give the researcher any new information. What this means regarding symptoms are the facts that needs to be addressed. Research may determine if symptoms can be managed if they are diagnosed early, or the severity of the symptoms if the child is diagnosed late. It is also important to conduct solid research and design a research study that will be inclusive of the problem at hand. The study must include previous research, quantitative surveys, feedback from parents, and review of health records.

CHAPTER 2. LITERATURE REVIEW

Research has shown that Latino children are diagnosed late with autism spectrum disorder (Amaral, 2017). This may also lead to difficulty in these children managing their ASD symptoms. Reasons for ethnic variations are poorly understood. Research has been conducted to identify the number of children who are diagnosed early and late, and the age at which they are diagnosed. The research does not show implicitly show the comparison of these groups and which ones manage symptoms the best, but there are various studies to show benefits of managing symptoms. This dilemma leaves a further gap for research. Further research is needed to specially address the reasons for late diagnoses. (Zuckerman, Sinche, Mejia, Cobian, Becker & Nicolaidis, 2014).

Autism affects children differently, so it is important for them to be diagnosed in a timely manner. It is also important for them to manage their symptoms effectively. Delayed diagnoses could have a serious effect on children (CDC, 2020). The CDC (2020) suggests that children should be diagnosed for ASD between 18 and 24 months. A carefully designed study is needed to compare the management of symptoms for early and late diagnoses. It is also important to study this area because Latino children are not getting the resources and support that is needed in order to manage their symptoms (Moody, et al., 2019).

Theoretical Orientation for the Study

Autism Spectrum Disorder is guided by cognitive and social psychological theories. These frameworks are empirically supported behavioral orientations. They are supported by the need to research origins of thoughts, feelings, and behaviors (Penner, et. al, 2013). An empirically supported autism theory is the Naturalistic Developmental Behavioral Interventions (NDBI; Schreibman et al., 2015). In the NDBI, children are supported in their natural settings, which may include educational or home environments. The NDBI teach the children developmental skills and strive to improve relationships between the child and the therapist (Schreibman et al., 2015).

In addition, the social psychological framework uses societal factors to determine why there are racial disparities (Penner, et. al, 2013). Albert Bandura developed a theory called the Social Learning Theory. He wanted to show how children learn behavior from their parents (Martin, Sturge-Apple, Davies & Gutierrez, 2019), and how that behavior could change based on the mental state of the child. These frameworks have also been connected to health disparities in certain populations. Social psychologists look at relevant concerns and how they contribute to autism spectrum disorder (Bandawe, 2010).

Review of the Literature

In the early 1960s, scientists and physicians believed that children with ASD were unlikely to respond to treatment (Schreibman et al., 2015). This led to further research by Charles Ferster and Merian DeMyer on autism and its effects on children (Schreibman et al., 2015). Autism has since become one of the fastest growing cognitive disorders in the United States, and affects about one in 59 children (Moody, et al. 2019). Autism was first classified as a disorder by Kanner and Asperger, who described these symptoms as atypical behaviors (Ousley & Cermak, 2014). Research shows that early diagnosis is associated with improved long-term developmental and family outcomes (Zuckerman et al., 2014). There needs to be a mechanism to compare the outcomes of early diagnoses and late diagnoses. This comparison would focus on how the parents responded to their child’s symptoms and if they were able to manage them effectively.

One dominant theme in autism research is heterogeneity (Rudacille, 2010). Heterogeneity refers to the etiology and diversity of the disorder (Georgiades, Szatmari & Boyle, 2013). Some of these symptoms include cognitive, emotional, and social functioning that are manifested differently across subgroups of children (Georgiades, Szatmari & Boyle, 2013).

Harris et al., (2019) collected data electronically through data capture tools. Participants were given multiple choice surveys and quantitative assessments. They were asked to rank their answers using a measurable scale of one to five. Data was also collected from pediatric hospital clinics and from parents of children with autism. Cases were identified through prescreening processes and parental consultations (Montiel-Nava, Chacin & Gonzalez-Avila, 2017). Data was collected by survey technicians who discarded useless surveys, checked for errors and coded the data into groups.

Other methods used in literature reviews were purposive sampling. Montiel-Nava, Chacin and Gonzalez (2017) prescreened participants using clinical data and chart reviews. The researchers conducted a study of Latino children and their parents. They set up an assessment for parents, who then completed a questionnaire based on feelings surroundings autism. The parents were also asked the age of their child at diagnoses and step they took to manage their children’s symptoms. The assessment was then coded and formulated into usable quantitative data. Focus groups were conducted in English and Spanish (Zuckerman et al., 2013). The groups reviewed late diagnoses and standards for ASD.

Children were recruited based on their ethnicity and their ASD diagnoses. In research it is important to maintain diversity and ethical procedures to ensure the authenticity of the study. Excluding diversity in research could impede the ability to generalize study results (UCSF, 2020), and may prevent certain populations from receiving much needed research. Although all of participants were Latino, there were difference Hispanic populations within the groups. The groups included individuals of Mexican, Puerto Rican, Venezuelan and Guatemalan races. Research assistants reviewed data from ASD clinics and studies (Montiel-Nava, Chacin & Gonzalez-Avila, 2017).

The strength of these methods was that there was a lot of data that showed benefits of early diagnoses and late diagnoses. Some children were diagnosed during school age and physicians were able to give a more accurate diagnoses, as opposed to early diagnoses where the parents relayed symptoms to the physician (Koegel et al, 2013). However, a major weakness is that factors for late diagnoses varied. The research included several Latino populations and took into consideration, cultural and economic differences. The limitations of these methods were that the research did not explicitly compare early versus late diagnoses in percentages. Another limitation is that the researchers (Harris, et al., 2019; Moody et al., 2019) stated that many Latino children were not identified by ethnicity, which could hinder the data. For example, in Venezuela, the children are all classified as Latino, and they are not separated into subgroups (Montiel-Nava, Chacin & Gonzalez-Avila, 2017). A more intensive study would be needed if a study based on race is requested by the scientific community.

When conducting autism research and reviewing the way symptoms are managed, it is important to have reliable resources. This information can add significant knowledge to the base of psychology. These articles help identify what is known and understood about ASD and what is yet to be known in this area. The current knowledge includes ASD numbers among Latino children but does not give the reasons for the late diagnoses.

The research into reviewing and comparing ASD symptoms management shows that there benefits to being diagnosed early (Zuckerman, 2014). Children who are diagnosed early between 18 and 24 months can avoid long-term ASD symptoms (Zuckerman, 2014). Identifying the way symptoms are managed could be a great educational resource in the Latino community. This could also persuade Latino parents to seek assistance for behavioral or other concerns in their children. There is a gap in research, as to the reasons for the late diagnoses. Harris et al., (2019) shows that possible factors may include lack of access to healthcare services, autism related stigmas and a lack of bilingual clinicians.

The research question has been answered because Latino children who are diagnosed early are able to manage their symptoms better than Latino children who are diagnosed late. Although there is limited research on this population (Amaral, 2017), rigorous approaches have been taken to improve on the evidence from the literature. The study will make a meaningful contribution to current literature as it will review early and late diagnoses. The study will decide is early diagnoses leads to better symptoms management. This correlates directly to the hypothesis, that Latino children who are diagnosed early manage ASD symptoms better than Latino children who are diagnosed late.

There are concerns that late diagnoses are not as prevalent as reported (Montiel-Nava, Chacin & Gonzalez, 2017). Opponents feel that although Latino children are diagnosed later than non-Latino children, the numbers vary too widely for comparison. Some studies report diagnoses at 24 months, while other studies show that Latino children are diagnosed after 53 months. Despite the discrepancies, the fact remains that effective management of symptoms are not often presented. If researchers can compare symptoms management of early versus late diagnoses, there is a possibility that late diagnoses may be curtailed (Moody et al., 2019).

Synthesis of the Research Findings

After reviewing the research, there is a need for a detailed plan to address the gaps in research. A common theme of autism spectrum disorder focuses on late diagnoses in Latino children; however, a comparison between how the symptoms are managed needs to be identified. Montiel-Nava, Chacin and Gonzalez-Avila (2017) focuses on the age of diagnoses among Latino children in Venezuela and America. The researchers show that children experience severe symptoms when they are diagnosed late. Parents stated that it was difficult to manage symptoms because they were unsure of what to do (Montiel-Nava, Chacin and Gonzalez-Avila, 2017). Furthermore, parents tried to manage behavioral concerns but did not have adequate support or skills to do so. These symptoms may include severe behavior and academic problems. This number was especially high for Latino children (Moody, et al., 2019).

Children who were diagnosed early were able to receive academic and behavioral supports. Furthermore, research has shown that intensive early intervention can make a big difference in the outcomes for people with ASD (Diagnosing and Managing ASD, 2020). When the child was diagnosed early, the parents were able to request supports. Some of these supports include Applied Behavioral Analysis (ABA) therapy for their child (Amaral, 2017). Having an ASD diagnosis early on, gave parents the ability to request treatment and behavioral therapists for their child. Therefore, they were able to manage symptoms with the support of therapists and treatment plans.

Research showed that when children are diagnosed earlier, they can manage symptoms better (Zuckerman, 2014). This is because parents can get the assistance that they need to help with behavioral and academic concerns. This does not mean that children who are diagnosed late are unable to manage their symptoms. All symptoms can be managed with appropriate therapy, treatment plans and medications as needed (Diagnosing and Managing ASD, 2020). However, this study focused on which group early versus late, manages their symptoms the best.

Harris et al., (2019) reviewed the child when the parent was first concerned about their child’s symptoms, and the age when the child was diagnosed. Parents in both countries tried to manage their children’s symptoms even without an ASD diagnoses. The children in America and in Venezuela experienced similar diagnosing delays. Investigators wanted to find the common factors between these ASD diagnosing delays, as the children were in different countries. They decided to look at the Latino groups and study the populations individually.

Harris et al., (2019) discovered that Latino populations may have many subgroups within their population. According to Campinha-Bacote (2003), other forms of cultural diversity includes religious affiliation, language, physical size, gender, sexual orientation, age, disability and more. In order to ensure individual variation and maintain diversity. The study must note characters and traits that are specific to that group and find ways to incorporate the findings into the research study. There were different Latino groups represented within the studies, and the researchers took care to ensure they were following ethical practices.

It is important to review several sources before relying solely on one research study. They can use the information from this study, in conjunction with their own research to see how parents, therapists and other stakeholders manage ASD symptoms. Parents may be hesitant to report behavior symptoms and management. Montiel-Nava, Chacin and Gonzalez-Avila, (2017), showed that in some Latino populations, behavior problems were associated with poor parenting skills. This fact made parents hesitant to seek help (Montiel-Nava, Chacin and Gonzalez-Avila, 2017).

Harris et al., (2019) reviewed the early and late ASD diagnoses in detail and compiled data. They reviewed school-based assessments and the diagnoses by school psychologists (Harris, et al., 2019). This is important to stakeholders who base their research on the study data. Another consideration in this study is that the school psychologists self-reported many of the results for this study. The study showed that school psychologists discussed that symptoms are managed better if they are caught earlier (Harris et al., 2019). School psychologists can recommend treatment plans for school aged children which assists with managing symptoms. The study results were coded into usable data.

Moody et al, (2019) reviewed ASD in Latino communities and the age when the child was diagnosed. The primary goal of the article was to present evidence-based practices and empirical data to support the research. The researchers implemented a bootcamp to address health disparities among Latino children and how to prevent late diagnoses of ASD. The authors researched a program called The Appreciative Inquiry/Bootcamp Translation (AI/BCT), which is a method of community engagement and participation (Moody et al., 2019). They encouraged children and parents with ASD to attend and complete surveys related to ASD age of diagnosis.

This program used methods to create outreach and awareness within the Latino communities. This program can be beneficial to investigators, because these are non-traditional methods. Investigators and stakeholders can use this data develop new evidence-based practices. The researchers stated that AI/BCT may reduce the late diagnoses in ASD (Moody, et al., 2019); however, it will also assist investigators with determining the causes of late diagnosis.

Critique of Previous Research Methods

Previous ASD research methods have traditionally focused on white children (Amaral, 2017). The research was in-depth analysis and often started while the child was 18 months. The research on Latino children was not quite as in-depth and often lacked in complexity and detail (Penner et. al, 2013). While reviewing previous research methods there was a clear pattern that developed. The research methods for Latino children included parental assessments, surveys, reviewing clinical charts and some observational methods.

Summary

It is important to conduct an extensive literature review when trying to obtain knowledge about a broad subject. In regards to Autism Spectrum Disorder, early and late diagnoses, literature reviews show that there are still knowledge gaps. There are also areas of research that needs to be performed in order to effectively compare the way symptoms are managed. The literature was able to provide a detailed synopis of how symtoms are managed in early ASD diagnoses and late ASD diagnoses.

CHAPTER 3. METHODOLOGY

Purpose of the Study

The purpose of this quantitative research study is to review and compare early and late diagnoses in Latino children. The result is to determine which group of children were able to manage their symptoms the best. The purpose is an attempt to understand if early diagnoses leads to better management of ASD symptoms in this population. The methodology used are surveys, record reviews and purposive sampling. The significance of the study is that it may establish a relationship or discover the reasons for the late diagnoses. The study will use reliable and validated data that is free of bias.

Research Question and Hypotheses

Hypothesis testing is an important activity of empirical research (Banerjee, Chitnis, Jadhav, Bhawalkar, & Chaudhury, 2009). There is a null hypothesis and an alternative hypothesis. The research question and hypothesis are as follow:

Research question: Do Latino Children who get diagnosed for ASD early between 18 to 24 months manage symptoms better than Latino children who are diagnosed late after 24 months?

Null Hypothesis: Latino children with ASD who are diagnosed early do not manage symptoms better than Latino children who are diagnosed late.

Hypothesis: Latino children with ASD who are diagnosed early manage symptoms better than Latino children who are diagnosed late.

The independent variable is the Latino children. The dependent variable will be the timing of the ASD diagnosis. The null hypothesis states that there is no association between the predictor and outcome variables in the population (Banerjee et al., 2009). The alternative hypothesis specifies the direction of the association between the predictor and outcome variables (Banerjee et al., 2009). The research shows that there is correlation between early diagnoses and better outcomes for management of symptoms.

Research Design

This quantitative study will use a descriptive research method design. The independent variable will be the autism spectrum disorder diagnosis. The constructs will include Latino children who were diagnosed with ASD between 18 and 24 months and Latino children who were diagnosed with ASD after 24 months. The dependent variable will be age of the child at their initial diagnosis. The research will review quantitative data to find a possible cause for the late diagnoses. Prospective participants will be identified by implementing community events and targeted specific populations. All participants will be required to sign a consent form which allows for the review of protected health information; additional sampling procedures are outlined below.

Target Population and Sample

The target population is Latino children between the ages of two and seven years of age. The study is targeting these children who have an active ASD diagnoses. The children’s’ cases will be reviewed to identify how their ASD symptoms were managed. The design approach will be a descriptive research method. The type of design will be a survey method research. In this type of research, participants answer questions administered through interviews or questionnaires. For the survey to be both reliable and valid it is important that the questions are constructed properly (Hale, 2018). Additional details and procedures in obtaining the steps for obtaining the target population are identified in the subsequent paragraphs.

The target population is Latino children who have an ASD diagnosis. Community outreach events will be held and targeted to parents of children with ASD. Flyers will be posted throughout the community, schools, clinics and autism treatment centers. Participants who respond will be screened and required to sign a consent. The consent will ask for permission in obtaining the medical records and health information of the child. After obtaining consents, an investigative review will be conducted among local hospital, autism centers and clinics in predominately Latino communities. This will include a meeting with hospital officials and therapists in order to identify prospective participants.

Participants would be included in the study if they have been diagnosed with ASD. They will be divided into two groups. The groups would be ASD diagnoses between 18 and 24 months, and ASD diagnoses after 24 months. Children would not be included solely based on ethnicity; they must meet the qualifications in order to be considered. The children would be qualified based on prescreening data obtained from community outreach programs. After a signed consent is signed by the parent, the child’s health records would be reviewed to see if they qualify for the research study. Participants would be excluded if they have other cognitive disorders such as Asperger’s or ADHD. The study is looking at a single factor, and do not want to address multiple factors. Participants will be recruited from clinics and organizations specializing in autism therapy. Researchers will receive the clinical records and work with behavioral therapists, pediatricians and parents to determine possible candidates. These medical records will be reviewed later to identify any documented symptoms and how they were managed.

Purposive sampling will be used to ensure the target population is obtained. Purposive sampling is a non-probability sample that is selected based on characteristics of a population and the objective of the study (Crossman, 2020). This sampling is preferred as researchers can tailor the study to a specific population. Flyers can be made in English and Spanish to attract Latino participants. In addition, heavy populated Latino clinics and schools to obtain prospective participants.

Procedures

Prospective participants will be identified through medical record review and through autism network partners. At each community outreach session, demographic information will be collected from prospective participants. Parents will be asked for their name, address and telephone number. They will also be asked for their child’s age at diagnosis and asked if they would return for a follow-up meeting. The follow up meeting will be a time for parents to ask questions, hear more about the study and sign health information consent forms. Protected health information (PHI) includes all individually identifiable health information, including demographic data, medical histories and test results (HIPAA Journal, 2018). The participants will be informed of the usage of this data and given the opportunity to decline signing the consent. If a participate declines to sign the consent, they will no longer be eligible to participate in the study.

Participants will be sent letters to participate in Spanish and in English. Participants will also be contacted via telephone. Spanish language translators will be available to assist parents with communication concerns. The researchers will take extra care to ensure native Spanish speakers are available. This is important because a study by Konkel (2015) found that participants are more likely to participate in a study when the researcher is someone who looks like them or can communicate with them in their own language.

There will be case studies, medical records reviews, with signed consents and questionnaires to design the study. The questionnaires will be related to the age of initial ASD diagnoses for the children. During the interviews, parents will also be asked if they were able to manage their children’s ASD symptoms. They might include factors as to why they were unable to manage them, but the study is primarily focusing on if the symptoms were managed.

give their reasons as to why they feel that their child was diagnosed late. The data from these research studies will be collected by technicians. They will review the questionnaires and code the information accordingly. The participants’ parents will be able to drop off their paper surveys at designated drop off locations, such as their children’s doctor office or an identify community center or autism treatment center. The researchers will also provide electronic surveys for participants.

The data will be reviewed for completeness before coding. The technicians will work in collaboration with the researchers to ensure all paper surveys are completed, medical record consent forms are signed, and that all information is present. The data collection process will be collected for a two-month period. This timeframe will give the researchers time to ensure all information is reviewed and entered the study database. Technicians will be able to contact participants for further information, or to complete missing items.

When analyzing data, the data must be reliable and valid. Reliability in research means

how consistently or dependably does a measurement scale measure what it is supposed to be measuring (Bannigan & Watson, 2009). The study has to be free of errors to the best of the researchers’ ability. For example, in this study researchers must be sure to include only the data that is reported on the questionnaire. Researchers cannot assume by speaking with the parents that they meant to check a certain response on the questionaire. They have to make sure the data is reliable and can be substantiated when reviewed by other researchers.

Validity is concerned with the mean and interpretation of a scale (Bannigan & Watson, 2009). This is important in an autism related study, because there is no medical test or gold standard for detecting autism (Amaral, 2017). The construct validity would be used in this study. It helps when there is no way of directly testing the relationship between the measurement scale and the underlying concept (Bannigan & Watson, 2009). The construct validity can validate a test if the researcher can show a strong relationship between the variables.

Ethical Considerations

It is important to have a solid recruitment strategy in place that is free from bias and unethical procedures. Rogerson, Gottlieb, Handelsman, Knapp and Younggren (2011) states that being knowledgeable of rules and regulations can prevent ethical errors. Some experts believe that fear of exploitation, based on unethical practices, may make minority communities distrustful to participate in research studies (Konkel, 2015). Researchers must take steps to ensure they are following ethical procedures. This includes providing excessive incentives, using deceptive measures and obtaining the appropriate consents for participants.

The American Psychological Association provides recommendations and ethics codes for researchers. The relevant sections for this study are sections 8 and 9. These sections are Research and Publication, and Bases for Assessments (American Psychological Association, 2010). These sections govern the ethical considerations for researchers and how to obtain consents. Section 8.06 Offering Inducements for Research Participation, states that reasonable efforts must be made to avoid offering excessive or inappropriate financial or other inducements for research participation (APA, 2010). This does not mean that researchers cannot offer incentives, but they must be careful that the incentives are not being used to coerce someone to participate.

Researchers must be sure to use transparent recruitment methods. Section 8.07 Deception in Research is the guiding ethical code for transparency. Deception should not be included in research, unless the study is investigating deception. Section 8.07 states that studies involving deception should not be conducted unless it has been determined that the use of deceptive techniques is justified by the study's significant criteria (CDC, 2019). Deceptive methods could void the authenticity of a research study and in the scientific community.

When working with human participants it is essential to have consents in place. Researchers must have consents from participants or their legal representatives in order to participate in the study. Sections 9.0 – 9.03 covers ethic codes Assessments, Bases for Assessments, Use of Assessments and Informed Consents in Assessments. These sections are vital to the survey because participants must be aware of how their data will be used; they also must consent to the research study. Researchers must make sure that each participant has signed a written consent or have indicated their agreeance if they are unable to write. This will keep the ethical components of the research.

CHAPTER 4. EXPECTED FINDINGS/RESULTS

This chapter presents findings from primary research and literature review. The findings are divided into two sections which are: what is already known and what the research expects to find. The purpose of this study was to find out if Latino children who receive an early ASD diagnosis manage their symptoms better than Latino children who receive a late ASD diagnosis. Some of the findings were expected, while some were not expected. The expected results are that conclusive information will be presented to show that either early diagnosis helps children manage symptoms better, or that the diagnosing time does not matter.

What is known is that Latino children are diagnosed with ASD on average at 53 months of age (Amaral, 2017), which is past the CDC recommended timeframe of 18 to 24 months (CDC, 2009). What is often unknown are the symptoms management of children who are diagnosed within the recommended timeframes. In addition, it is important to review the symptoms of ASD and determine if early diagnoses help children to manage their symptoms, as opposed to receiving a late diagnosis. The population studied were Latino children in America and Venezuela. The children were between two and seven years of age. The children lived in rural and urban populations and came from single family and two-parent homes. Parents who participated in the interviews were 93% female, with an average age of 40 years. All parents self-identified as Latinx; 86% were fluent in Spanish and 66% reported that Spanish was their preferred language (Chlebowski et al., 2018).

When reviewing early diagnoses, it is important to see how symptoms are managed. Adams et al., (2019) states that the earlier children receive treatment, the better their prognosis.  Latino parents who received an ASD diagnoses between 18 and 24 months reported that they were able to manage their child’s symptoms (Lopez, Magana, Morales & Iland, 2019). They were also able to manage the symptoms as the child got older. They contributed this ability to the supports they received from community programs and initiatives.

Additionally, research conducted by Lopez, et al., (2019), showed that an organization called Parents Taking Action (PTA) assisted parents to obtain early diagnoses. The program was described as a culturally tailored psychoeducation program designed to address disparities for Latinx children with ASD and their families. Parents received ABA therapy, which included a behavioral plan written by a Board-Certified Behavior Analyst (BCBA), a behavior technician that visited the child’s home regularly and implemented the behavior plans. These parents reported that their child’s symptoms improved and were manageable with the skills that learned from the ABA program.

If autism is left untreated for long periods of time it could make symptoms worse (Harris et al., 2019). Parents who had children diagnosed after 24 months, and closer to 53 months state that they had difficulty managing their children’s symptoms (Chaidez, Hansen & Hertz-Picciotti, 2012). The main reason was due to their children’s autism being more severe (Chaidez, Hansen & Hertz-Picciotti, 2012). Many parents cited lack of knowledge as a reason they were unable to manage their children’s symptoms, as they simply did not know what to do (Blanche-Imperatore, Diaz, Barretoo, & Cermak, 2015). When they finally received an ASD diagnoses, they were often confused and hesitant to accept the diagnoses (Blanche-Imperatore et al., 2015).

Although the research sample is small, it confirms that hypothesis that Latino children who are diagnosed early manage their symptoms better than Latino children who are diagnosed late. Although the reasons are many it is important to look at what is known, what has been discovered and how future research can be effective. The information from the research can be used to design programs and implement evidence-based practices to assist Latino parents with managing their child’s symptoms.

CHAPTER 5. DISCUSSION

Implications

The main objective of the current study is to discover what if children who are diagnosed with ASD early manage their symptoms better than children who are diagnosed late. The study’s target population is Latino children, ages three to seven years of age and their parents. Research shows that many Latino children are diagnosed after 24 months with ASD (Amaral, 2017), this is considered a late diagnosed. Prior knowledge is that ASD diagnoses should be take place when the child is between 18 to 24 months of age. There are Latino children who are diagnosed early as well. It is interesting to see how each group manage their symptoms and if one group manages better than the other.

There are several implications of the study. Although not explicitly stated, there are many reasons why Latino children’s symptoms are managed differently. Symptoms may be managed differently based on the parents’ knowledge of ASD or the resources that are available to them. Research shows that it is common for behavior problems to be associated with poor parenting skills (Montiel-Nava, Chacin and Gonzalez-Avila, 2017), which could lead to parents becoming overwhelmed with their child’s behavior. This can potentially discourage parents from seeking assistance with their child.

The literature review showed that major themes in autism spectrum disorder are governed by social psychology theories. The Social Learning Theory developed by Bandura showed how children learned behavior from their parents (Martin, Sturge-Apple, Davies & Gutierrez, 2019). This is important because some of the older children did not want to get tested for autism (Moody et al., 2019). They might have felt that having an ASD diagnoses attached to them could hinder their social status or cause embarrassment (Zuckerman et al., 2014).

The implications for all parties involved in the study are high. The scientific community along with other stakeholders such as school officials and medical professionals will benefit

from this study. Future researchers will be able to use the study results to design appropriate educational programs and interventions for Latino children. School officials can work with medical professionals to ensure children are diagnosed in a timely manner, and that the children receive appropriate support for their ASD diagnoses. Autism screening can be offered at the child’s school, which can assist with accessibility issues.

All parties will ensure that the highest ethical standards are followed. Everyone will take specific measures to ensure that interventions, evidence-based practices and support plans are created and followed in ethical manners. Because if ethic codes are not followed, they could have a serious effect on the study and follow-up procedures. Unethical practices can impact a person’s mental and physical health, including their levels of stress, anxiety, depression, and blood pressure (Tsahuridu, 2016). 

Methodological Strengths and Weaknesses

The design approach is quantitative. There are no direct observations of children and their environments. The data involves questionnaires, medical record reviews and interviews. The target population are Latino parents of ASD children who have been diagnosed after 24 months. This methodology is best for this study because the purpose is to gather information to answer the research problem. The parents’ feelings and experiences are important in this study, as the information will be converted to quantifiable data. The information from parents can also be analyzed and reviewed to discover the many ways that ASD symptoms are managed.

The strength of using a quantitative design approach is that findings can be generalized. This means that if the study is designed well, then the sample will be representative of the population (University of Southern Denmark, n.d.). Other strengths of this methodology are that descriptive research methods can be easy to analyze, consistent and reliable. A weakness of this approach is that when using quantitative methods, the data may not be as robust. Although interviews are performed, it may be difficult to capture the participants’ feelings or answer the “why” questions, if the study is not properly designed.

Suggestions for Future Research

In order to advance the knowledge base more research is needed to identify additional ways in how ASD symptoms are managed, in early and late diagnoses. Researcher want to know if economic or social levels affect the way ASD symptoms are managed (Adams, et al., 2019). More data is needed from Latino parents in order to have larger sample sizes. Small sample sizes may not be representative of views of Latinx parents from other geographic locations (Harris et al., 2019). Additional information that is vital is if the parents are receiving assistance from the federal government. This is important because it could change the way the parent responds to the survey.

According to Harris et al, (2019) parents receiving services through publicly funded mental health programs may be influenced by the context on which the treatment was received. Identifying this information in the screening process would be helpful, as research questions could be designed to capture these individual and their feelings towards their current health program. Results from the current study can be reviewed and used as a learning tool for future research.  Bishop-Fitzpatrick and Kind (2017) stated that this research can lead to development of interventions and prevention efforts that maximize health and increase quality of life. Issues such as health literacy programs can assist parents in managing their child’s symptoms.

The aspects that can be improved includes research of the geographic areas of the population that was studied. The present study included primarily low-income Latino families. Although the study was in the United States and Venezuela, the participant population was similar. It would be interesting to conduct research among Latino families in wealthy populations with middle to high incomes. The studies included primarily Latino mothers in who were younger, less educated (Chaidez, Hansen & Hertz-Picciotti, 2012), this could also lead to disparities in symptoms management. This would be good comparative research to see if the early diagnoses and symptoms management still is best in this population.

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