Journal of Autism and Developmental Disorders

, Volume 44, Issue 7, pp 1507–1519 | Cite as

Ethnicity Reporting Practices for Empirical Research in Three Autism-Related Journals

  • Nigel P. Pierce
  • Mark F. O’Reilly
  • Audrey M. Sorrells
  • Christina L. Fragale
  • Pamela J. White
  • Jeannie M. Aguilar
  • Heather A. Cole
Original Paper

Abstract

This review examines ethnicity reporting in three autism-related journals (Autism, Focus on Autism and Other Developmental Disabilities, and Journal of Autism and Developmental Disorders) over a 6-year period. A comprehensive multistep search of articles is used to identify ethnicity as a demographic variable in these three journals. Articles that identified research participants’ ethnicity were further analyzed to determine the impact of ethnicity as a demographic variable on findings of each study. The results indicate that ethnicity has not been adequately reported in these three autism related journals even though previous recommendations have been made to improve inadequacies of descriptive information of research participants in autism research (Kistner and Robbins in J Autism Dev Disord 16:77–82, 1986). Implications for the field of autism spectrum disorders are discussed in addition to further recommendations for future research.

Keywords

Ethnicity Race Demographics Autism spectrum disorder Reporting practices 

Introduction

Many research articles are published in autism-related journals without adequately providing sociocultural and ethnicity-related information. Considering that research may have widespread implications for instructional practices (Twyman and Sota 2008) and educational policies (Abedi et al. 2004; Simpson and Sasso 1992; Stahmer and Mandell 2007), not including participant ethnicity could impede advancements in the diagnosis of autism spectrum disorder (ASD) and access to efficacious interventions for ethnically diverse individuals. Some researchers would suggest that assessing race and ethnicity variables is vital to improving outcomes among lower socio-economic status (SES) groups, particularly ethnic minorities (Shanawani et al. 2006). More importantly, recent research has revealed that children from lower SES and from ethnic minority backgrounds who are diagnosed with ASD are underrepresented in research and intervention (e.g., Hilton et al. 2010; Tek and Landa 2012).

Kistner and Robbins (1986) identified inadequate descriptive information of research participants in autism research over 12 years and suggested that insufficiencies found reduced the generalizability of results and limited researchers’ ability to replicate studies and practices. More recently, Machalicek et al. (2008) reviewed school-based instructional interventions for students with ASD and found that only 22 % of the studies identified the participants’ ethnicities. They noted that despite the lack of information about participants’ ethnicities, many of the interventions used for individuals with ASD targeted skills that could be affected by cultural differences in participants’ communication, social, and play skills (Machalicek et al. 2008). These inconsistencies highlight methodological issues that potentially have hindered the advancement of autism related interventions with culturally diverse populations (Kistner and Robbins 1986) and raise concerns of what works for whom, by whom and under what conditions (Dyches et al. 2004; Klingner et al. 2007; Shin and Sorrells 2012). Such limitations in autism-related research can be problematic in terms of appropriate assessment and diagnosis, treatment selection, family participation, as well as intervention efficacy in improving social, behavioral, and communication skills of individuals with ASD.

The aforementioned inconsistencies in reporting practices’ ethnicity are relevant as there is a growing body of evidence emerging that racial and ethnicity differences impact individuals diagnosed with ASD differently. Tek and Landa (2012) identified variances in communication delay between ethnic minority and non-minority toddlers with ASD. Even when the SES of toddlers is relatively similar, researchers have found that ethnic minority and non-minority groups differed from each other on the clinical presentation of autism symptoms on standardized tests (Tek and Landa 2012). Chiang (2008) identified differences in social consequences maintaining challenging behaviors between Taiwanese children and white Australian children with ASD. Reported communicative functions of challenging behavior were different between ethnic groups although many of the topographies (e.g., self-injury, tantrums, aggression) were the same.

Other researchers have suggested that differences in cultural groups must be considered when working with children with ASD who are from a non-dominant linguistic background (Trembath et al. 2005) or when identifying disorders that are behaviorally defined (Dyches et al. 2004; Wallis and Pinto-Martin 2008). Likewise, it is important to account for cultural differences as ethnic minority students diagnosed with ASD continue to increase (Estrem and Zhang 2010; Rodriguez 2009). Such differences in research samples must be identified to better provide culturally relevant services and assessments (see Hampton et al. 2002), particularly when research has shown minority groups as under-diagnosed (Begeer et al. 2009; Mandell et al. 2009) or diagnosed much later than non-minority groups (Mandell et al. 2002). In cases where there are language differences, adaptation and translation of assessment measures cannot always account for cultural differences or equate as being psychometrically sound (Bornman et al. 2010).

With the recent proliferation of research in the field of ASD, and the increased number of ethnic minorities (Centers for Disease Control and Prevention 2012; Hilton et al. 2010) it is imperative to re-examine the methodological practices for reporting ethnicity in autism research journals. To date, no systematic review of research of ethnicity reporting in autism research has been conducted. By implementing a similar approach as Sifers et al. (2002) and Raad et al. (2008), we addressed the following questions: (a) What are the reporting practices of ethnicity for research participants in three autism-related journals (Autism, Focus on Autism and Other Developmental Disabilities, and Journal of Autism and Developmental Disorders)? and (b) When participant ethnicity is reported, does ethnicity as a variable have implications for research findings and practice? Results and implications as well as further recommendations for future research and practice in the field are also discussed in this review.

Methods

Selection Procedures and Criteria

The selection procedure for this review consisted of a comprehensive multistep search of articles in three autism-related journals. Journals included: Autism (AUTISM), Focus on Autism and Other Developmental Disabilities (FOCUS), and the Journal of Autism and Developmental Disorders (JADD). These journals were selected for this review because they collectively reflect a variety of empirical research that involves the entire range of ASDs for more than a decade. These three journals represented the primary publications that included a high volume of ASD research for the years covered by this review. All three journals were published prior to 2000 (Autism, vol. 1, 1997; Focus, vol. 1, 1986; and JADD, vol. 1, 1971). Years selected for review were 2000, 2002, 2004, 2006, 2008 and 2010 to get an extensive sample of autism-related articles. First, we identified all published documents by year and journal using PsycInfo and SAGE databases. A total of 1,217 journal documents were yielded for the years described. Each document was saved electronically and organized by journal, author and year (e.g., AUTISM-Weiss 2002) for further review. During this process, we also identified book reviews, commentaries, editorials (preface), or letters to/ask the editors and labeled them by journal, author (if applicable) and year. Once all journal documents were appropriately labeled, all book reviews, commentaries, editorials (preface), or letters to/ask the editors were removed and 943 articles were allocated for further review. Hand searches were completed for recent FOCUS journals to identify studies that were not available in aforementioned databases from January to December of 2010.

The second phase of the search consisted of examining each article’s participant section to determine if the research participants’ ethnicity/race was identified. For the purpose of this review, ethnicity/race is defined as the descriptive characteristic (self-reported or perceived) that determines a categorical identification of research participants (e.g., Caucasian, White, Black, African American, Latino, Hispanic, Asian, Native American, or Other; Lin and Kelsey 2000). In addition to examining the participant section, all tables were evaluated for possible participant descriptors. Articles that described participants by geographical region rather than ethnicity were coded as not identifying ethnicity or race. For example, Beatson and Prelock (2002) included families that were described by region (e.g., the Vermont Rural Autism Project) but did not include ethnicity or race descriptors.

Autism spectrum disorder research was classified as any quantitative or qualitative research study that included participants whose primary diagnosis was either Autistic Disorder, Asperger’s or Pervasive Developmental Disorder-NOS (American Psychiatric Association 2000; Wing 1988). Specifically, these three diagnoses are considered a continuum unlike other pervasive developmental disorder categories (e.g., Rett syndrome, Childhood Disintegrative Disorder) that are often viewed independently because of their distinct differences (Smith et al. 2007; Wing 1988). Thus, articles in these three selected journals which focused primarily on disabilities other than ASD were excluded (i.e., Rett syndrome, Childhood Disintegrative Disorder, Fragile X Syndrome, Intellectual Disabilities and Mental Retardation) from this review. Only one qualitative study met this inclusion criterion (Parette et al. 2004).

Of the 943 journal articles, 138 met all three of the final inclusion criteria, which are: (a) ethnicity identified by narrative description or indicated in a table, (b) research focused on ASD or research that is directly connected to ASD (e.g., parent/family stress level and ASD, peer/teacher perceptions of individuals with ASD and, ASD diagnostic or assessment tools), and (c) at least one participant included had been diagnosed with ASD (e.g., Bieberich and Morgan 2004; Fisch et al. 2002; Stone et al. 2004).

Coding Agreement Process

The first author examined and coded all journal articles to determine the frequency of ethnicity reporting (YES = including ethnicity descriptors or NO = not including ethnicity descriptors). Subsequently, four of the co-authors of this study examined and independently coded these journal articles. Any disagreements were re-evaluated and discussed until there was 100 % agreement across all articles examined.

Results

Results of this study are organized based on the two research questions. First, what are the reporting practices of ethnicity for research participants in three autism-related journals (Autism, Focus on Autism and Other Developmental Disabilities, and Journal of Autism and Developmental Disorders)? Second, when participant ethnicity is reported, does ethnicity as a variable have implications for research findings and practice?

Variability of Ethnicity Reporting

The frequency (as indicated by percentage) of articles reporting ethnicity/race variables was calculated for each journal individually, as well as collectively. For the years covered by this review, 138 (28 %) articles included ethnicity/race descriptors of research participants. JADD reported the highest overall percentage (36 %) of journal articles that included ethnicity/race of research participants. AUTISM reported the second highest overall percentage of ethnicity/race (34 %), while FOCUS reported the lowest overall percentage of articles including ethnicity/race descriptors of only 11 % for journal articles reviewed.

Figure 1 illustrates the ethnicity reporting by journal and year. AUTISM and FOCUS showed the most variability from year to year, while ethnicity was identified most consistently in JADD as shown by an upward trend. Additionally, Fig. 1 provides the extent to which ethnicity has been reported and gives a general trend of reporting by journal from year to year. To the best of our knowledge, there was no single event in the field of ASD that would explain variability (i.e., AUTISM, FOCUS) during the years reviewed.
Fig. 1

Percentage of ethnicity reporting. Note AUTISM = Autism Journal; FOCUS = Focus on Autism and Other Developmental Disabilities; JADD = Journal of Autism and Developmental Disorders

As illustrated by Fig. 1, in 2000 25 % of the AUTISM articles identified ethnicity. In subsequent years the percentages were 33, 0, 27, 57, and 13 % respectively. The percentages indicated an inconsistent pattern of reporting ethnicity from year to year, though ethnicity was reported most frequently in 2008 (57 %). There was a substantial increase in reported ethnicity from 2006 to 2008 (i.e., 27 % to 57 %).

In 2000, ethnicity was included in less than 1 % of FOCUS articles. For subsequent years the percentages were 12, 36, 1, 1, and 10 % respectively. A very low percentage of reporting ethnicity was identified in 4 of the 6 years with reporting at or below 10 % of published articles. Ethnicity was reported most frequently in FOCUS during 2004 (36 %), however there was a substantial decline in reporting for the 3 years that followed.

In 2000, 23 % of JADD articles identified the ethnicity of the research participants. In subsequent years the percentages were 24, 17, 39, 37, and 51 % respectively. Of the journals reviewed, JADD has had the most consistent reporting from year to year as demonstrated by an overall upward trend. Ethnicity was reported most frequently in 2010 with a slight majority of articles (51 %) identifying the participants’ ethnicities.

The results of this review indicated varying degrees of reporting ethnicity within journals for two of the three journals. For example, AUTISM identified ethnicity/race most frequently in 2008 (57 %); however no articles were identified as including ethnicity/race in 2004 for that same journal. Thus, of the journals reviewed, AUTISM demonstrated the greatest variance of reporting ethnicity from year to year.

In like manner, FOCUS reported the highest percentage (36 %) of ethnicity/race during 2004, yet there were no published articles in FOCUS that included ethnicity/race descriptors during 2000. There was some variability from year to year; however, ethnicity reporting was consistently low for the majority of the years reviewed.

Articles that Reported Ethnicity as an Analytic Variable

This section provides results for the 138 articles that included ethnicity or race descriptors of research participants and addresses the second research question: When ethnicity is reported, does ethnicity as a variable have implications for research findings and practice? Each article was identified as having either, (a) non-analysis of ethnicity/race variable, or (b) an analysis of ethnicity/race variable. A non-analysis indicated that, although ethnicity or race of research participants was included, there was no clear indication that ethnicity or race was evaluated when determining research outcomes or findings (i.e., no mention of analysis of race or ethnicity as a factor described or discussed within the results or discussion). Conversely, articles were noted as having an analysis when evidence of race and ethnicity factors was evaluated (i.e., authors note limitations in findings based on small ethnic minority sample or authors identified race and ethnicity as having/not having significant effect on the overall finding).

More than half (54 %) of the articles were identified as non-analysis (75 total articles, including Stone et al. 2004 study 1), while the remaining articles (64 total articles, including Stone et al. 2004, study 2) were identified as analysis. AUTISM reported the largest percentage (71 %) of articles that analyzed ethnicity or race, while FOCUS and JADD reporting similar percentages of 56 and 57 %, respectively. Articles identified as analysis provided the bases for subsequent examination of research outcomes and implications.

Reported Effects on Research Outcomes

This section describes the 64 articles (46 %) that were identified as reporting an analysis of ethnicity. Findings were categorized as (a) limitations identified discussed/sample limitations (LDS), (b) no significant differences (NSD) of ethnicity/race found or reported (NSD), or (c) difference in ethnicity/race identified or discussed (DID). Results for each category are further discussed.

Limitations/Sample Limitations

Twenty-six articles (40.5 %) identified having a small or limited ethnic minority sample as a factor in the overall findings or outcomes (i.e., Davis and Carter 2008; Overton and Rausch 2002; Weiss 2002). Although demographic information (i.e., race and ethnicity) was provided, authors acknowledged limitations of research findings in relation to ethnic minority groups suggesting a need to have included a more diverse sample to increase generalizability and replication of studies outcomes. Other limitations with respect to sample demographics included participant samples with English only language speakers (Hoffman et al. 2008), only dual parent households (e.g., married or living with significant other; Nissenbaum et al. 2002; Smith et al. 2010), and only families in high socio-economic brackets (Davis and Carter 2008; Rivers and Stoneman 2008; Smith et al. 2008; Weiss 2002).

No Significant Differences

Twenty-six (40.5 %) articles, including Stone et al. (2004) analyzed ethnicity and race variables and reported NSD on research outcomes or findings when ethnicity and race variables were analyzed. These articles accounted for participants’ ethnicity as a variable (e.g., analysis of demographic characteristics of sample that included age, gender, income, and ethnicity; Ozonoff et al. 2008) within the analysis of the data (i.e., Bryson et al. 2008; Callahan et al. 2008; Hoffman et al. 2006; Ibanez et al. 2008; Liptak et al. 2006; Wachtel and Carter 2008). NSD on research outcomes or findings when ethnicity and race variables were analyzed are relevant for the scope of this review as the findings provided demographic data on race or ethnicity that has been assessed quantitatively (e.g., t-statistic, ANOVA, logistic regression analysis, standard deviation) or qualitatively (e.g., structured interviews).

Differences Reported on Race/Ethnicity

Twelve articles (19 %) described factors of ethnicity or race that impacted the overall findings or outcomes of the study and are summarized in Table 1. The first column identifies author(s) and year. The second column describes sample size of research participants, diagnoses, and ethnicity. The third column identifies topics covered by the research (i.e., family, healthcare, education, diagnostic, and intervention). The last column summarizes results and implications of ethnicity on the overall findings and provided implications on future studies (e.g., White and African Americans reported similar percentages of psychotropic medication use while Hispanic participants were less likely to use any psychotropic medication; Rosenberg et al. 2010). Additionally, several articles targeted topics specific to outcomes related to certain ethnic groups (see Hilton et al. 2010; Jegatheesan et al. 2010; Kalb et al. 2010).
Table 1

Findings of ethnicity analysis

Author/Year

Participants/diagnosis ethnicity/race

Topic(s)

Findings

Cohen and Tsiouris (2006)

n = 122 (PDD diagnosis)

80 % European American

3 % African American

4 % Hispanic

5 % Asian American

8 % Mixed/Other

Family, diagnostic

Education level or ethnic background of fathers was not associated with type of depression but was associated with reported frequency of a family history of mood disorders

Croen et al. (2002a)

n = 5,038 (autism diagnosis)

2,361 White

1,382 Hispanic

604 Black

389 Asian

288 Other

Diagnostic

Increase in autism prevalence was the same for males and females; singletons and twins; whites, Hispanics, Blacks, and Asians; and the same for each stratum of maternal age and maternal education

Croen et al. (2002b)

n = 4,356 (autism diagnosis)

47.3 % White

27.9 % Hispanic

11.5 % African American

7.7 % Asian

5.7 % Other

Diagnostic

High risk for African Americans of having a child with ASD. Some adjustments made for maternal birth place and all other characteristics

Hilton et al. (2010)

n = 13 African American families (child with ASD diagnosis)

Family, healthcare, diagnostic

Expressed interest of African American families in ASD research. Eighty-six percent of the original sample did not meet the final qualification criteria because of lack of a sibling, parental unavailability or limited contact, geographical distance, incarceration, and death of a parent

Jegatheesan et al. (2010)

n = 3 (Families with child with autism diagnosis)

3 South Asian families living in the United States (multilingual)

Family

Family’s religious beliefs (Islam) were a factor in how they raised their children diagnosed with an ASD. It was stressed that in spite of their child’s ASD diagnosis, their children needed to speak in Arabic in keeping with their families’ religious beliefs and prayer. Cultural differences (religious beliefs) between families and providers were highlighted as significant to outcome and concern that many of the cultural difficulties between families and those who providing services

Kalb et al. (2010)

n = 2,720 (ASD diagnosis)

2,457 White (90 %)

137 Black/African American (5 %)

83 Asian (4 %)

43 Other (1 %)

206 Hispanic (7 %)

2,514 Not Hispanic (93 %)

Family, diagnostic

Statistical demographic differences between onset pattern groups including age and race. Parents reporting a loss of skills being disproportionally Asian and African American. Parents also reporting language most severely affected by loss were more likely Asian American and less likely Caucasian

Mandell (2008)

n = 82 (ASD diagnosis; hospitalized)

74 % White

17 % African American

9 % Other

n = 678 (ASD diagnosis; non-hospitalized)

84 % Caucasian

8 % African American

7 % Other

Healthcare, diagnostic, intervention

Hospitalized youth were, on average, older, more likely to be African American, and more likely to be adopted than non-hospitalized youth

Parette et al. (2004)

n = 6 (Chinese American families)

5 Taiwanese immigrant families

1 Hong Kong immigrant family

Family, education, diagnostic

Differences were found when comparing Chinese American parents to Asian American parents in how they help their young children with disabilities; parental participation in educational decision-making (i.e., communicating through translators or other advocates, awareness of legislation and other information related to their children’s disabilities); preference for Chinese or Asian American professionals work with their children; and emphasis in English and American culture

Rosenberg et al. (2010)

n = 5,181 (ASD diagnosis)

4,766-White

190-Black/African American

113-Asian/Asian American

82-American Indian/Alaskan Native

24-Native Hawaiian/Pacific Islander

217-Other

399-Hispanic

4,785 Not Hispanic

Healthcare, diagnostic

White and African American participants reported similar percentages of psychotropic medication use, while Hispanic participants were less likely to use any psychotropic medication

Ruble et al. (2010)

n = 35 (teacher/student with autism diagnosis)

Students

74 % Caucasian

23 % African American

3 % Biracial

83 % male

Teachers (Ethnicity not reported)

94 % female

Education, diagnostic

IEP quality was poor across all assessed schools and child characteristics including ethnicity

Volker et al. (2010)

n = 62 (students with HFASD)

58 Caucasian

1 African American

1 Asian

1 Hispanic

1 Other

Education, diagnostic

Matching of participants across conditions on the basis of age, gender, and ethnicity, minimized the potential impact of several major demographic variables

Wetherby et al. (2008)

n = 60 (subgroup with ASD)

67.2 % Caucasian

18 % African American

8.2 % Hispanic

3.3 % Asian

3.3 % Other

Diagnostic

Reluctance of African American families to participate in research that provided screening for children 9–24 months of age

Participant data is illustrated as it is listed by the article (i.e., total participants and/or percentage of participants by ethnicity)

Articles were analyzed by topic to identify areas of ASD research that included ethnicity descriptors of research participants. Topics of research included family, healthcare, education, diagnostic, and intervention. Several articles covered multiple topics (e.g., Family and Diagnostic; Kalb et al. 2010; see Table 1) with the most frequently identified topic being diagnostic, followed by family, health care, education, and intervention. Several relevant article findings are summarized by topic and are specified below.

Diagnostic

Diagnostic related research topics were highlighted in 11 of the 12 articles that identified factors of ethnicity that impacted the study. Wetherby et al. (2008) discussed as a part of their findings a reluctance of African American families to participate in research that provided autism screening for children 9–24 months of age. The authors could not determine the reasons why African American families showed an unwillingness to participate in their study. Moreover, Wetherby et al. (2008) suggested that early screening tools were important diagnostic instruments within the medical field and should be validated, particularly for high-risk populations. Findings described by Wetherby et al. contradicted findings discussed by Hilton et al. (2010), which was also included in this review. Hilton et al. found that all of the families (i.e., African American) who were recruited expressed a willingness to participate in a genetics study. However, according to Hilton et al. it was determined that 67 % of the families were disqualified from participating on the basis of family structure (e.g., only one parent, lack of sibling). Other factors that excluded families included premature birth and children who were being raised by non-biological caretakers.

In another study, Kalb et al. (2010) evaluated the difference in patterns of ASD symptom onset using the Social Responsiveness Scale and Social Communication Questionnaire. They suggested that there were some statistical demographic differences between onset pattern groups including age and race. They found that parents reporting a loss of skills were disproportionally Asian and African American. In addition, parents reporting language as the most severely affected loss were more likely Asian American and less likely Caucasian.

Other diagnostic findings worth mentioning include two articles by Croen et al. (2002a) and (b) that identified an increase in autism prevalence across ethnic minorities in California, while the second article suggested that African American families were at higher risk for having a child with ASD compared to Hispanic or White families.

Family

Family related research topics were highlighted in 5 of the 12 articles that identified factors of ethnicity that impacted the study. Jegatheesan et al. (2010) discussed how a family’s religious beliefs (Islam) were important considerations in how they raised their children diagnosed with an ASD. It was stressed that despite their child’s ASD diagnosis, the families’ religious beliefs were a priority, which included a child’s ability to speak in Arabic. Cultural differences (religious beliefs) between families and providers were highlighted as significant to the overall treatment (communication skills) and outcome of the child. The authors identified cultural and language difficulties as a barrier between families who were originally from other countries and those providing services. Similarly, Parette et al. (2004) highlighted differences for Asian families with children diagnosed with ASD who lived in the United States. They found that Asian families living in the United States often supplemented educational services with speech pathologists who were also Asian and shared similar cultural values and backgrounds. Parette et al. determined that families included these additional services to help alleviate language barriers between service providers and their family.

Healthcare

Healthcare related research topics were highlighted in 3 of the 12 articles that identified factors of ethnicity that impacted the study. Rosenberg et al. (2010) found that White and African American participants had similar percentages of psychotropic medication use, while Hispanic participants were less likely to use any psychotropic medication. Rosenberg et al. noted that factors supporting the use of psychotropic medications included geographical areas (e.g., urban, rural) and level of access to specialized healthcare that was not easily accessible to underserved individuals diagnosed with ASD.

Other healthcare findings worth mentioning include Mandell (2008) who examined factors in determining psychiatric hospitalization among children diagnosed with ASD. When ethnicity/race was analyzed, it was determined that hospitalized youth were, on average, older and more likely to be African American. Additionally, children who were hospitalized were more likely to be adopted than non-hospitalized children. What is most critical to minorities diagnosed with ASD is that children who were hospitalized were less likely to have used early intervention services (Mandell 2008), lending credence to the importance of early diagnoses (Sansosti et al. 2012) and access to interventions (Mandell et al. 2002).

Cohen and Tsiouris (2006) examined other relevant health issues by identifying factors associated with parental mood and anxiety disorders in relation to having a child with ASD. According to Cohen and Tsiouris, although the educational level and ethnic background of fathers identified by this study were not associated with depression, education and ethnicity were associated with the reported frequency of a family history of mood disorders.

Education

Education related research topics were highlighted in 2 of the 12 articles that identified factors of ethnicity that impacted the study. Ruble et al. (2010) evaluated the effectiveness of an assessment tool that analyzed the quality of individualized education program (IEP) (e.g., including a description of the student’s present levels of performance). Overall, the assessment tool produced an adequate interrater reliability, while additional analysis showed that both location of the school and the child’s race were insignificant. Nevertheless, what was significant was that IEP quality was equally poor across all assessed school and child characteristics including ethnicity.

Intervention

Intervention related research topics were highlighted in 1 of the 12 articles that identified factors of ethnicity that impacted the study. Mandell (2008) suggested that hospitalized youth were, on average, older, more likely to be African American, and more likely to be adopted than non-hospitalized youth. It was further noted that early intervention and early diagnosis reduced the risk of hospitalization of children with ASD (Mandell 2008). Furthermore, Mandell suggested that demographic characteristics (e.g., single parent households) were a key factor in determining accessibility for families with fewer resources thereby increasing the burden of care.

Discussion and Future Research

To the best of our knowledge, this is the first systematic review of race and ethnicity reporting practices for autism-related research. Variables associated with ethnicity and race have significant implications for professionals working with ethnic minority students who refer to published research when determining applicable treatment and intervention strategies to meet the needs of individuals diagnosed with ASD and their families (Jarquin et al. 2011). Thus, the purpose of this review was to establish a line of inquiry that examine factors relevant to ethnicity and race (including cultural) differences for individuals diagnosed with ASD and their families, starting by evaluating the reporting practices of race and ethnicity for research participants in three autism-related journals. We then evaluated the implications of race and ethnicity on research outcomes when participants’ race and ethnicity was identified. Although our questions are simple in nature, we acknowledge that variables associated with ethnicity, race, and cultural differences are complex (Dyches et al. 2004). Nevertheless, by addressing these complexities, several notable findings emerged.

First, we found that 72 % of articles reviewed did not include ethnicity or race descriptors for research participants despite previous recommendations to improve methodological practices in ASD research (Kistner and Robbins 1986). Of more than 943 studies reviewed across the three journals, only 138 reported ethnicity or race. Our current findings of reporting or inconsistent reporting of participants’ ethnicity in ASD research are signified by an ascending trend of reporting race and ethnicity in JADD and less so in AUTISM and FOCUS (as shown in Fig. 1). Consequently, these findings in ASD research are consistent with previous studies of reporting practices in other empirical research (Artiles et al. 1997; Bos and Fletcher 1997; Raad et al. 2008; Reed et al. 2013; Sifers et al. 2002; Vasquez et al. 2011).

Some research suggests that factors such as ethnicity and SES are mitigating variables that should be considered (Mandell et al. 2002). Clearly, if the field is to provide appropriate and relevant assessments that improve ASD diagnosis and effective interventions for diverse and ethnic minorities at risk for and with ASD and their families, researchers must move closer to systematically and intentionally reporting participant ethnicities and demographic variables as well as describing who is being included in ASD research and how ethnically diverse individuals react to and are impacted by evidence-based ASD interventions. It is our hope that bringing these issues to light will draw considerable attention in the field of ASD especially when ethnic minorities are increasingly being diagnosed with ASD (Centers for Disease Control and Prevention 2012), yet are not adequately identified or represented in ASD research (Hilton et al. 2010) as indicated by this review.

Second, we found that when participant ethnicity is reported, it has been inconsistently evaluated relative to overall research outcomes (i.e., only 64 of the 138 studies incorporate an analysis of ethnicity/race). Slightly more than half (54 %) of the articles that included ethnicity or race descriptors did not analyze ethnicity or race as a variable when determining the overall applicability, which suggests that broad generalizations in the effectiveness of outcomes are made without considering applicability across demographic differences (Dyches et al. 2004). Dyches and colleagues suggest that generalizing findings without consideration of racial or ethnic differences raise basic concerns of what works for whom, by whom, and under what conditions. As indicated by this review, articles are providing demographic information (e.g., race and ethnicity) without having any level of analysis across ethnicity or race variables, which limits the contextual understanding and applicability for research findings that may include ethnic minorities (Klingner et al. 2007; Reed et al. 2013). Providing a deeper analysis of race and ethnicity could increase the generalizability of results across ethnic groups and could urge researchers who are not already engaged in such investigation to examine factors of race and ethnicity for individuals with ASD.

Third, we found that when ethnicity was evaluated, 40.5 % of the articles identified limitations of studies (i.e., limited generalizability to ethnic minorities or small ethnic minorities included in sample, see Gadow et al. 2008). As indicated by this review, many of the participant samples included small or limited ethnic minority samples accentuating the need to include ethnic minority participants (Hilton et al. 2010). It is unclear if limited samples of ethnic minorities in ASD research are a result of minorities not being recruited to participate in ASD research, limited access to minority groups diagnosed with ASD by researchers, or the unwillingness of minorities to participate in ASD research (Wetherby et al. 2008). Hilton et al. (2010) have suggested that identifying ethnically diverse samples is necessary and can be obtained in ASD research: However, it requires specific attention from those who conduct research.

While some research has provided strategies for recruiting and retaining ethnic minorities (Horowitz et al. 2009; Kao et al. 2011), our findings would suggest that recruiting ethnic minorities seems to be problematic in ASD research (Hilton et al. 2010; Wetherby et al. 2008). This is particularly important considering the disparities and disproportionalities of underserved populations that still exist (Artiles et al. 2005; Morrier et al. 2008; Sansosti et al. 2012; Skiba et al. 2006; Sullivan and Artiles 2011) and the impact of published research on services that are available to individuals with autism and their families (Dyches et al. 2004).

Fourth, articles that analyzed ethnicity and race variables either identified no significant difference (NSD) across ethnic groups or identified importantdifferences (DID) that had an affect the study outcome. In both cases, there are fundamental implications for the field of ASD. For instance, articles that analyze race and ethnicity variables provide subsequent researchers viable outcomes to compare, replicate or extend across similar or different ethnic groups. What is more, an analysis of race and ethnicity provides well-defined intervention outcomes inclusive of ethnic minorities, which professionals in the field of ASD who are working with diverse or underserved populations can access.

Even when no differences are found across ethnic variables, generalizations of intervention outcomes are more plausible within or across samples, despite the possibility that some variance regarding race and ethnicity may still exist (Dyches et al. 2004; Trembath et al. 2005; Wallis and Pinto-Martin 2008). Moreover, relevant data may also emerge when a comprehensive analysis of ethnicity and race factors are conducted. Liptak et al. (2008) noted that while there were NSD in how ethnic groups accessed medical services, children diagnosed with ASD were more likely to have private health insurance and were identified by a higher SES than other children. Including such information may urge researchers to examine other influences associated with diversity that may emerge.

Along the same lines, important differences were noted in a number of studies when ethnicity and race were analyzed in relation to the overall outcome. A few example being, outcomes and differences in ethnic groups and mood disorders associated with ASD (Cohen and Tsiouris 2006), communication differences for individuals with ASD (Kalb et al. 2010), differences in treatment and hospitalization of youth diagnosed with ASD (Mandell 2008), differences in prescription of psychotropic medication and its use (Rosenberg et al. 2010), differences in educational outcomes and experiences for ethnically diverse individuals (Ruble et al. 2010), differences in prevalence and risks of autism across different ethnic groups (Croen et al. 2002a, b), and the inclusion and exclusion differences of certain ethnic groups in ASD research (Hilton et al. 2010). Furthermore, important differences were also noted with respect to cultural beliefs on intervention and treatment for individuals with ASD (Jegatheesan et al. 2010) and the effects of family structure on intervention and treatment for individuals with ASD (Parette et al. 2004).

All of the aforementioned studies emphasize dissimilarities of group samples that affected study outcomes, which may not have been documented if demographic information (e.g., ethnicity or race) were not reported and analyzed. These findings reiterate the need for consistent identification of demographic variables (e.g., ethnicity, race) in ASD studies.

Findings outlined by this review emphasizes the relevance of ethnicity and culture by pointing not only to the necessity of reporting ethnicity and cultural differences but also the impact or non-impact of these variables on a number of outcomes. Just as Tek and Landa (2012), as well as Chiang’s (2008) work provided relevant data about differences in ethnicity and race that impacts future studies in the field of ASD, the current study further highlights a continuous and consistent need to identify and analyzes ethnic variables. By including and analyzing participants’ ethnicity, researchers were able to link similarities or differences in empirical research with a potential relevancy to practice (i.e., White and African Americans reported similar percentages of psychotropic medication use while Hispanic participants were less likely to use any psychotropic medication; Rosenberg et al. 2010).

Results of this study highlight a need to include race and ethnicity of participant samples and samples that include ethnicity minorities diagnosed with ASD. Thus, a first step is to include the ethnicity and race of participants. By including this variable, researchers will have greater latitude to compare, replicate, and generalize their findings. Furthermore, better descriptions ensure greater methodological soundness in published research, as well as external validity. Identifying ethnicity or race in future ASD studies can lead to a more comprehensive investigation about individuals included in the sample, as well as inform evidence-based intervention with diverse individuals with ASD. Even when differences are not found, adequately reported demographics such as race and ethnicity provides contextually valid researched treatments to compare students from diverse cultures, communities, and classrooms. With an increased emphasis and examining the impact of participants’ ethnicities on study results in the field of ASD, we believe that reporting practices will have similar gains demonstrated in the works of Raad et al. (2008).

Second, future research must not only identify this variable but also consider factors of ethnicity, race, and culture that may affect research outcomes because of an increased need to identify interventions and services that are effective for individuals with ASD from diverse backgrounds (Dyches et al. 2004; Mandell et al. 2009; Trembath et al. 2005; Wilder et al. 2004). Although we cannot infer causation between reporting participants’ ethnicity and better access to ASD interventions or services, we believe that future research that examines access and services and disproportionate diagnosis for ethnic minorities (see Morrier et al. 2008) may improve outcomes for ethnic minorities with ASD and their families (Liptak et al. 2008). Therefore, a greater analysis of ethnicity in future studies is warranted.

Third, this review suggests a need to evaluate the recruitment and retention of ethnic minorities diagnosed with ASD. Although our findings indicate a limited number of studies that consistently identify the ethnicity of participants, there is some evidence that indicates a reluctance of ethnic minorities to participate in ASD research (Wetherby et al. 2008), as well as genuine interest among some ethnic minorities to participate in ASD research even if they do not meet the inclusion requirements (Hilton et al. 2010). Researchers might include qualitative research to identify and interpret the social and contextual factors of ASD and ethnic diversity, as well as gain insight into ethnic minorities’ perceptions, understandings, applications and acceptance of ASD interventions (Pugach 2001; McCray and García 2002).

Finally, it would appear that ethnic descriptors are not terms by which electronic data is currently organized. This yields a potentially inaccurate account of published works that could include diverse participants who were not identified because descriptors were not used. Use of ethnicity as a key descriptive variable or more specific terms or key words (i.e., multicultural (ism), culture, diversity, ethnicity, race, Caucasian/White, African American/Black, Hispanic/Latino, Asian/Korean/Chinese, and Native American/Indian) could lead to a more comprehensive database. Therefore, the results of this review provide a small indication why searches using electronic databases are limited when ethnicity is used as a search term.

In the past two decades, research has been a catalyst in increasing knowledge of ASD and its related conditions among practitioners (Murray et al. 2011; Symes and Humphrey 2011) and healthcare providers (Volkmar et al. 2006). Yet, accounting for ethnicity and race in ASD seems to lag in published research despite the growing emphasis on meeting the needs of a growing ethnic minority population (Centers for Disease Control and Prevention 2012).

Limitations

This review brings to light the paucity of ASD studies that identify ethnicity of research participants and the lack of analysis of the impact of ethnicity on ASD research and practical outcomes. Nonetheless, there are several limitations of this study. First, using three autism-related journals only provided a contextual view of ASD research and does not account for research conducted by other related fields (e.g., medical, speech pathology, social work) for this same population. Nevertheless, we believe that this review does give a sample of peer-reviewed articles that focused on ASD.

A second limitation of this study is that articles covered by this review did not include other published related research (e.g., Rett’s Syndrome, and Childhood Disintegrative Disorder). By excluding research within a particular journal, our finding should be interpreted with caution. Additionally, although multiple years have been evaluated, these findings are limited to the years covered by this review. It is possible that including some of these excluded articles as well as articles not covered in odd years may have improved the overall percentage of articles reporting ethnicity.

Third, the goal of this review was to indicate the frequency of ethnicity reporting practices in ASD research articles. There was no attempt to determine the intent of published research, authors, or journals reviewed. Therefore, the finding should be evaluated with caution.

While any attempt to draw definitive conclusions based on this data would be premature, it brings to light the extent to which the issue exists. The lack of reporting ethnicity is troubling. However, we are encouraged by the gains mentioned. In our estimation, consistently providing demographic information (i.e., ethnicity and race) of research participants improves the possibility to conduct study-to-study comparisons and actual replications (Morris et al. 1994).

By bringing to light these inconsistencies, this study serves as an initial step toward consistently including ethnicity as a part of the participant description in ASD research. Henceforth, including additional demographic data should not be a discretionary matter if the field of ASD is to improve the quality of its research.

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Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Nigel P. Pierce
    • 1
    • 2
    • 3
  • Mark F. O’Reilly
    • 2
  • Audrey M. Sorrells
    • 2
  • Christina L. Fragale
    • 2
  • Pamela J. White
    • 2
  • Jeannie M. Aguilar
    • 2
  • Heather A. Cole
    • 2
  1. 1.University of North Carolina at Chapel HillChapel HillUSA
  2. 2.University of Texas at AustinAustinUSA
  3. 3.Frank Porter Graham Child Development InstituteCarrboroUSA

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