ORIGINAL PAPER

Ethnicity Reporting Practices for Empirical Research in ThreeAutism-Related Journals

Nigel P. Pierce • Mark F. O’Reilly • Audrey M. Sorrells •

Christina L. Fragale • Pamela J. White • Jeannie M. Aguilar •

Heather A. Cole

� Springer Science+Business Media New York 2014

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). Impli-

cations for the field of autism spectrum disorders are dis-

cussed 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 prac-

tices (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 underrep-

resented 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 partici-

pants’ 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 partici-

pants’ communication, social, and play skills (Machalicek

et al. 2008). These inconsistencies highlight methodologi-

cal issues that potentially have hindered the advancement

N. P. Pierce

University of North Carolina at Chapel Hill, Chapel Hill, NC,

USA

N. P. Pierce � M. F. O’Reilly � A. M. Sorrells �C. L. Fragale � P. J. White � J. M. Aguilar � H. A. Cole

University of Texas at Austin, Austin, TX, USA

N. P. Pierce (&)

Frank Porter Graham Child Development Institute, 517 S.

Greensboro Street, Carrboro, NC 27510, USA

e-mail: nigel.pierce@utexas.edu

123

J Autism Dev Disord

DOI 10.1007/s10803-014-2041-x

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 con-

ditions (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 prac-

tices’ 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 clin-

ical presentation of autism symptoms on standardized tests

(Tek and Landa 2012). Chiang (2008) identified differ-

ences in social consequences maintaining challenging

behaviors between Taiwanese children and white Austra-

lian 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 assess-

ment measures cannot always account for cultural differ-

ences 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 methodo-

logical 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 ques-

tions: (a) What are the reporting practices of ethnicity for

research participants in three autism-related journals

(Autism, Focus on Autism and Other Developmental Dis-

abilities, and Journal of Autism and Developmental Dis-

orders)? 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

J Autism Dev Disord

123

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 Disor-

der-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 Develop-

mental Disabilities, and Journal of Autism and Develop-

mental 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 eth-

nicity/race descriptors of research participants. JADD

reported the highest overall percentage (36 %) of journal

articles that included ethnicity/race of research partici-

pants. AUTISM reported the second highest overall per-

centage of ethnicity/race (34 %), while FOCUS reported

the lowest overall percentage of articles including ethnic-

ity/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.

As illustrated by Fig. 1, in 2000 25 % of the AUTISM

articles identified ethnicity. In subsequent years the per-

centages 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

10

20

30

40

50

60

2000 2002 2004 2006 2008 2010Per

cent

age

of E

thni

city

Rep

orte

d by

Jou

rnal

JADD

FOCUS

AUTISM

0

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

J Autism Dev Disord

123

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 per-

centages 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 demon-

strated 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 partici-

pants and addresses the second research question: When

ethnicity is reported, does ethnicity as a variable have

implications for research findings and practice? Each arti-

cle 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 sam-

ples 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

J Autism Dev Disord

123

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 eth-

nicity. 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 pro-

vided implications on future studies (e.g., White and

African Americans reported similar percentages of psy-

chotropic 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).

Articles were analyzed by topic to identify areas of ASD

research that included ethnicity descriptors of research

participants. Topics of research included family, health-

care, education, diagnostic, and intervention. Several arti-

cles 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, particu-

larly 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 dif-

ference in patterns of ASD symptom onset using the Social

Responsiveness Scale and Social Communication Ques-

tionnaire. 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 fam-

ily’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 (com-

munication 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 inclu-

ded 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

J Autism Dev Disord

123

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

J Autism Dev Disord

123

impacted the study. Rosenberg et al. (2010) found that

White and African American participants had similar per-

centages 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

Table 1 continued

Author/Year Participants/diagnosis

ethnicity/race

Topic(s) Findings

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)

J Autism Dev Disord

123

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 inter-

ventions (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 identi-

fied 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 hospi-

talized 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 inter-

vention and early diagnosis reduced the risk of hospital-

ization 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 work-

ing 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 evalu-

ating 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 partici-

pants 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 consis-

tent 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 inten-

tionally 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

J Autism Dev Disord

123

suggests that broad generalizations in the effectiveness of

outcomes are made without considering applicability

across demographic differences (Dyches et al. 2004). Dy-

ches 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 eth-

nicity 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 eth-

nicity 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 accen-

tuating 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 partici-

pate 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 vari-

ables either identified no significant difference (NSD)

across ethnic groups or identified important differences

(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 vari-

ables provide subsequent researchers viable outcomes to

compare, replicate or extend across similar or different

ethnic groups. What is more, an analysis of race and eth-

nicity provides well-defined intervention outcomes inclu-

sive of ethnic minorities, which professionals in the field of

ASD who are working with diverse or underserved popu-

lations can access.

Even when no differences are found across ethnic

variables, generalizations of intervention outcomes are

more plausible within or across samples, despite the pos-

sibility 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 eth-

nicity 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 ana-

lyzed 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 out-

comes 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). Fur-

thermore, 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 dissimi-

larities 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 rele-

vance 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

J Autism Dev Disord

123

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 dif-

ferences in empirical research with a potential relevancy to

practice (i.e., White and African Americans reported sim-

ilar percentages of psychotropic medication use while

Hispanic participants were less likely to use any psycho-

tropic 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 lati-

tude to compare, replicate, and generalize their findings.

Furthermore, better descriptions ensure greater methodo-

logical 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 evi-

dence-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 stu-

dents 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 ser-

vices, 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 par-

ticipants, 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 Garcı́a 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 eth-

nicity 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 popu-

lation (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 limita-

tions 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 Disinte-

grative 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.

J Autism Dev Disord

123

Third, the goal of this review was to indicate the fre-

quency of ethnicity reporting practices in ASD research

articles. There was no attempt to determine the intent of

published research, authors, or journals reviewed. There-

fore, 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 eth-

nicity 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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