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Abstract

There is little or no research that addresses race or ethnicity as it relates to autism. This article addresses some of the challenges that exist with African American families getting early diagnosis or correct diagnosis and thereby receiving inadequate interventions for their children. Early diagnosis is critical if a child is suspected of having autism. Research has shown that on average African Americans receive a diagnosis of one and a half to 2 years later than white children (Mandell 2002; Sell et al. Disabil Health J 5:9–17; 2012). This delay has grave consequences for treatment options and subsequent severity of symptoms. African American children are not typically included in research studies that can help differentiate if there are phenotypic characteristics that would necessitate another type of treatment course (Cuccaro et al. Am J Med Genet Part B 144B:1022–1026; 2007). Further, there may be inherent biases against certain cultures, and these biases could result in the disparate diagnosis and/or treatment for African American children and their families if they are not acknowledged and addressed when developing treatment plans (Hilton et al. J Autism Dev Discord 633–639; 2010). More attention is needed to include African American families in research and to listen to their concerns as they describe their child’s symptoms, their stresses, and acceptance of the diagnosis of autism.
Autism in the African American
Population
Ruby M. Gourdine and Carl L. Algood
Introduction
Research has indicated that there are no discernible differences in rates at which
children acquire autism (Sell et al. 2012; Morrier et al. 2008; Yeargin-Allsopp et al.
2003). However, there are differences in available services and access to certain
services as it relates to African Americans residing in the United States (Mandell
and Novak 2005; Thomas et al. 2007). This article will use a comprehensive
literature review to present research and experiences of African Americans who
have children with autism. While there has been considerable research on the
autism spectrum disorders, this method of inquiry is used because limited research
has been conducted on racial characteristics (phenotype) and social conditions that
may affect African American children with autism in the United States.
The issue of access to health care is one that continues to elude certain segments
of the African American population. The limited access to care along with other
factors contributes to health care disparities among African Americans in the
United States (Mandell et al. 2002; Newacheck et al. 2002; Thomas et al. 2007).
Syntheses of health disparities research provide compelling evidence of race and
ethnicity as social, rather than biological constructs, and the root of related health
care disparities as being largely due to unequal social interactions (Institute of
Medicine, 2002 as cited in Mandell et al. 2006). The limited care for children with
autism is among a litany of health care concerns that African Americans face.
Further, when these medical issues are discovered, they are often diagnosed later
and children may have more difficulty in adhering to treatment, resulting in poorer
outcomes. Another issue along with the later diagnosis (approximately 1½ years or
more than white children) or the incorrect diagnosis is that children in African
R.M. Gourdine (*) • C.L. Algood
School of Social Work, Howard University, Washington, DC, USA
e-mail: rgourdine@howard.edu;clalgood@yahoo.com
V.B. Patel et al. (eds.), Comprehensive Guide to Autism,
DOI 10.1007/978-1-4614-4788-7_155,
#Springer Science+Business Media New York 2014
2455
American families may be diagnosed as behavior problems and not as autistic
(Mandell et al. 2002).
This article will address the disparity in access to medical services, the later
diagnosis, and lastly treatment options and advocacy as it relates to African
Americans. The authors will make recommendations to address these issues as it
relates to African Americans who have autism.
Health Disparities in the African American Population
Numerous researchers have written in the literature on the disparities in the
healthcare system between African Americans, ethnic minorities, and the white
population (Mandell et al. 2002,2005,2006; Cuccaro 2007; Sell 2012). Newacheck
et al. (2008) documented a strong relationship between race and disability, partic-
ularly in regard to African Americans. Ngui and Flores (2006) discovered cultural
differences in African American families’ quest to secure services.
Focusing specifically on the plight of children with autism, Sell et al. (2012)
posit that “race has been shown to influence patients’ access to health care resources
prompting epidemiologists and clinicians to be mindful of potential racial dispar-
ities in diagnosis and treatment of individuals with autism spectrum disorder (10).”
The disparities exist despite the fact that there is no evidence that there are any
differences in prevalence rates (Sell et al. 2012). Also, Thomas et al. (2007)
emphasized in their study that accessibility to supports and services for parents
with children with autism in families from ethnic backgrounds is limited when the
parents’ educational level is not high; they reside in an area that is not metropolitan
and there is lack a specific treatment modality.
Similarly, Mandell (2002) conducted a study on race differences in age of
diagnosis among Medicaid eligible children with autism. The focus of this study
was to determine if children were identified early and received a diagnosis of autism
spectrum disorder (ASD). If they received an early diagnosis, there is evidence that
the educational and behavioral services that are available and are obtained at that
time are most effective (Mandell et al. 2005). Race is important in this research as
Mandell et al. (2002) found that African Americans are less likely to seek mental
health services and when they do, they often have bad experiences. Their study
included 406 children who were Medicaid eligible in the year 1999 who were born
between January 1983 and May 1996 and were diagnosed with autistic disorder and
had two Medicaid claims for mental health services.
Of the 406 youths in the sample, 59.6 % (242) were African American, 29 %
were white (118), 8.1 % were Latino, and the rest fell into other race categories.
These data were obtained from Medicaid files in the city of Philadelphia. The
average age of the children was 9 years old and most were male (79 %). Using
the statistical test of Chi – square (w
2
), this statistic compared groups on demo-
graphic characteristics such as age at diagnosis, age of entry into mental health
system, and the time it took to receive a diagnosis. The linear regression examined
2456 R.M. Gourdine and C.L. Algood
differences by race in the diagnosis of autism (Mandell et al. 2002). In this study,
“African American children received their diagnosis on average 1½ years after
white children (7).” Mandell et al. (2002) assert that once in treatment African
American children needed three times the visits over a period of three times as long.
They suggest factors other than race were in play. They do admit to some limita-
tions, first and foremost are that the Medicaid claim forms were not standardized
nor were there standardization of the severity of the symptoms. The gaps in the time
it takes to get a diagnosis and services speak to the need for early symptom
identification. In addition, there might be financial reasons why families did not
seek services earlier or because they lacked medical care. Additionally, there may
be an issue of professionals not being able to identify symptoms. A social issue may
be that African American concerns were not favorably viewed initially.
Mandell et al. (2009) studied racial and ethnic differences in the identification of
children with autism. The problem is that children were being identified later or
being misdiagnosed even though clinicians could identify children as early as
2 years old. They cite the following reasons why they believe that these disparities
happen: (1) inadequate screening procedures, (2) slow response to parental con-
cerns, and (3) lack of awareness of symptoms (493).
Mandell et al. (2009) found that Black children were identified later and were
misdiagnosed with conduct disorder or adjustment disorder. The study included
a cross section of 8-year-old children with ASD who resided in target areas
throughout the United States. The sample included 2,568 children who were born
in 1994. The subjects were classified by a qualified clinician. The data was gleaned
from case records by qualified persons to review the DSM IV criteria. The outcome
variable was coded as present if the child met the diagnostic criteria. They used
eight categories of race which included “American Indian or Alaska Native, Asian,
Black (these authors used Black rather than African American because all Blacks
are not African American) Hispanic (regardless of race), Native Hawaiian or Pacific
Islander, White, multiracial groups (due to small numbers the last groups were
collapsed) (494).” These results are compelling as they indicate there were differ-
ences in the identification of Black children who were more likely to have IQs lower
than 70 than other racial groups documented in their records. They were more likely
to have been less than 2,500 g at birth. Among these Black children with lower IQs,
they were less likely to have a documented diagnosis of ASD. Education levels of
mothers were differentiated by race as well. These findings confirm previous
research that Black children with ASD are diagnosed at older ages than are white
children.
Sell et al. (2012) made a comparison of ASD Diagnostic Statistical Manual
(DSM) IV-TR criteria and associated features among African American and white
children in Philadelphia County, Pennsylvania. Their premise is that race has been
shown to influence parent’s access to health care and there is some evidence
through research that because of these differences, disparities exist for African
American children. Sell et al. (2012) confirm that the Centers for Disease Control
did report differences in prevalence rates between African Americans, whites, and
Autism in the African American Population 2457
Hispanics. The prevalence rates were higher for whites. These authors were
concerned that racial differences had more to do with timing of the diagnosis and
the type of diagnosis received. That is, African Americans received diagnoses up to
2 years later and the diagnoses typically were autistic rather than having Asperser’s
syndrome or pervasive developmental disorder not otherwise specified
(PDD-NOS).
Sell et al. (2012) cited in their paper that other studies have found racial
differences in ASD. Also, they cite Cuccaro and colleagues who found that African
Americans were more likely to have language delays (10). Yet, Lord (2006) and
colleagues did not find that this was so in their study. Sell et al. (2012) found that
“African American children with ASD as observed in their practice have less
frequent deficits in eye contact or non-verbal behavior than whites (10).” Citing
a 2008 report of ASD, African American children 8 years of age were more
aggressive and had more defiant behaviors than white children. In their study,
they found that only 9 % of African American children had a previous diagnosis
of ASD as compared to whites. These researchers cite some confounding data on
the observations of African American children diagnosed with ASD.
Using a parental questionnaire to collect data, African American children
presented with (1) hyperactivity, (2) impulsivity, and (3) inattention. The teachers
responding to the questionnaire rated the African American children similarly.
Interestingly, when looking at racial differences in clinical presentation, African
American children were more likely to be diagnosed with schizophrenic spectrum
disorders than white youths. Further, African American youths were more likely to
be diagnosed with a psychotic disorder.
Sell et al. (2012) conducted a study of three cohorts in Philadelphia County due
to the demographic composition that were favorable to the study. They used
secondary data analysis from the Pennsylvania Autism and Developmental Pro-
gram (PADDSP). Data were extrapolated from evaluation summaries. All children
in the study were 8 years old thus, allowing time for a diagnosis to already have
been determined.
The process for collecting data included the following steps: a common defini-
tion was used, standardized method of data collection was used, and a clinician
reviewed the records, and data abstractors referred to a list of 34 trigger phrases as
a method to collect data. Additionally, the DSM-IV-TR was used to confirm
diagnosis. Descriptive statistics were used along with frequencies to summarize
the demographic data. The data was collected over 3 years (2002, 2006, and 2008).
Their results are: there are no significant differences between white and African
American children with ASD regarding age at first evaluation, age of earliest
diagnosis, or age of earliest evaluation. Additionally, they did not find differences
between symptoms using the DSM IV. There were differences between African
American children with abnormal levels of fear (66 %) and whites (55 %) having
this symptom. These symptoms are viewed with caution as they relied on a limited
record review. The sample size was 343. Lastly, they did not specify the direct
behavior abnormalities. In conclusion, these authors suggest that race is less of
a factor in this particular county (Sell et al. 2012, 15).
2458 R.M. Gourdine and C.L. Algood
Clinical Phenotypic Findings for Autism in African
American Families
Cuccaro et al. (2007) assert that little research has looked at clinical and phenotypic
findings with African Americans with autism. His study is among the first to do so.
These authors state there have been at least two studies that contradict the preva-
lence issues among African Americans (Croen et al. 2002; Hillman et al. 2003 as
cited in Cuccaro 2007) which indicate the rates are higher than other groups. What
Cuccaro et al. (2007) sought to do was investigate the relationships between genetic
or biological etiologies of autism and race (1,022). His study is important in that
study of one race does not necessarily transfer to another race. For instance, there
are phenotypic and genotypic differences in African Americans in other health
conditions (i.e., heart disease, prostate cancer). This study included 46 African
Americans and 298 Caucasians from a large pool of a multistate study on genetics.
They were between 3 years and 21 years of age and had a diagnosis of autism.
Children were deemed African American if one or both parents were of African
American descent. Data were collected by administering the Autism Diagnostic
Interview-Revised (ADI-R). Findings were that African Americans showed signif-
icant delay in language acquisition of first words and phrase speech, leading these
researchers to claim that there was a more severe language phenotype in the African
American participants. This data was taken from caregiver reports. Family educa-
tion could have also been a factor in these findings. These findings are preliminary
and should be taken with caution.
Collins et al. (2006) state that autism studies in the African American population
are rare and that results in the Cuccaro et al. (2005) study indicate a need for further
studies with other ethnic groups. These authors “confirm the involvement of
GABBA4 in autism through identification of significantly associated single nucle-
otide polymorphisms (SNP’s) within an independent African American population
(Collins et al. 2006, 8).” Although this was a small sample size of only 54 families,
significance was found in the dataset.
Yeargin-Allsopp et al. (2003) indicate that “African American families who
have children at younger ages and have less education tend to be identified as
having autism by school sources.” Dyches et al. (2004) cite ecological theories that
indicate that the common denominator for children identified as having autism is
that they come from highly intelligent families.
Cultural Differences
There have been some observations/findings of differences according to race for
families and children facing autism. Mandell and Novak (2005) have systematically
noted those differences. For example, as cited in Mandell et al. (2005), Yeh et al.
(2004) “found that African American, Asian/Pacific Islander, and Latino were less
likely than whites to endorse personality, relational, familial issues or trauma as
Autism in the African American Population 2459
causes of children’s problems (122).” This article cites that African Americans tend
to accept physical causes and are more unlikely to accept nontraditional modes of
treatment such as diet accommodations and are less likely to accept less traditional
methods of care (Mandell et al. 2005). An important issue is that clinicians may
have different expectations about treatment needs and may not screen as early for
African American families. As a result of the relationship with the medical provider
and their lack of knowledge of diverse cultures, physicians are more quickly to
discount concerns of African American parents.
Wilder et al. (2004) examine ways that teaching plays a part in conveying
multicultural perspectives with children who have autism. This is particularly
important as teachers are the service providers for this population of children. In
the past, children with autism were often misdiagnosed. It has been documented
that African American families typically turn to family, friends, and religious
groups before they seek professional help. According to these authors, culture
plays a part in how families interpret certain behaviors. Tincani et al. (2009) indi-
cated that culture plays a significant role in how parents view the disability of their
child and allows them to look at the situation from a positive perspective.
And so, family expectations may be different from what the professionals
expect. Persons of other cultures may feel that that they are not treated fairly.
Their disconnect results from the fact that they do not see persons of their own
cultural background represented. For example, the textbooks may not have pictures
that look like them and, consequently, may assume that because they are not
represented, the services are not meant for them (Wilder et al. 2004). Therefore,
it is essential that persons working with different cultures be aware of any
preconceived attitudes toward a particular racial group and that those preconceived
notions impact their treatment of these clients in their practice and/or services
(Obiakor 1994 as cited in Wilder et al. 2004). In sum, Wilder et al. (2004) state,
“personal and professional biases may substantially affect the education and treat-
ment of individuals with autism (107).”
Although personal biases exist and must be confronted when dealing with
children with autism, they may be limited in their academic achievements, and in
addition, teachers with low expectation do indisputable harm to these students.
Teacher expectations should be high for any student placed in a classroom.
According to Wilder et al. (2004), “multicultural learners have three major prob-
lems, and that (1) they are culturally different, (2) they are linguistically different,
and (3) they have exceptionalities that are stacked with challenging behaviors.
These problems should alert professionals that in their work with multicultural
students with autism and their families, that there is scant research specific to the
challenges these families face (Wilder et al. 2004, 110).”
Morrier et al. (2008) concur that later diagnosis and intervention is problematic
for children who are ethnically different. They further indicate that cultural
mismatches between students and teachers can be a factor in disproportionate
representation. In their study they found that when compared to other ethnicities,
Caucasian children were found to have ASD eligibility 54 times more than
children of other ethnic backgrounds while African American children were
2460 R.M. Gourdine and C.L. Algood
under identified about 50 % of the time (Morrier et al. 2008). Further, Tincani et al.
(2009) contend that a major impact of not having an early diagnosis, which
occurs often with African American children with autism, is special education
services will not be granted to them when needed if the diagnosis of autism is
rendered 2 years later.
Mistrust and Lack of Inclusion of Research Studies Aimed
at Minority Populations
Hilton et al. (2010) cite that African American children with autism are seriously
underrepresented in genetic studies. Their study documents efforts to include
African Americans in autism genetic research. African Americans in the United
States are 12.3 % of the total population, but represent only 2.3 % of research
population of 5,431 subjects using the Autism Genetic Resource Exchange
(AGRE). This repository reported that 85.2 % of its 1,168 families have European
ancestry and that leaves a total of 14.8 % for all other ethnic groups (Hilton et al.
2010). Yet, another repository, the Interactive Autism Network (IAN), using
Internet access for families to volunteer for participation in autism research indi-
cates that only 5 % (463) of its 9,817 persons with ASD as being African American
(they can be biracial as well) (Hilton et al. 2010). These low numbers have
devastating results for African Americans. It is difficult to ascertain whether there
are any diagnosable differences in ASD among African Americans and, therefore,
have treatment and intervention that are severely limited or compromised as options
for them. An important point these authors make is that although prevalence rates
may not differ, there may be underlying genetic structures between African Amer-
ican and Caucasian subjects.
Additional research is cited to delineate genetic differences in African American
populations. Other medical and psychiatric conditions are noted to differ. There is
a genetic variation in Apolipoprotein D in African Americans exclusively (Desai
et al. 2003 as cited in Hilton et al. 2010). For example, African Americans appear to
be affected by schizophrenia more often (Bresnanhan et al. 2007 as cited in Hilton
2010).
Hilton et al. (2010) identify several reasons African Americans are underrepre-
sented in genetic research on autism. Listed below are those reasons:
Significant delays in diagnosis
Less likely to receive autism diagnosis on their first specialty visit (more likely to
be diagnosed as conduct disorder or adjustment disorder)
Motivation to participate (perception of negative impact)
Important to any type of medical or social research is the context in which it
occurs. For example, recruitment efforts for minority participation are important.
The more effective efforts include planning for transportation, child care, incentives
(both monetary and nonmonetary), inclusion of ethnic minorities on research teams,
targeted media advertisement, and addressing the multiple obligations and stressors
of potential recruits (Hilton et al. 2010).
Autism in the African American Population 2461
Research has shown that persons with a lower socioeconomic status tend not to
participate in research trials (Perez et al. 2007; Henderson et al. 2008; Skinner et al.
2008 as cited in Hilton et al. 2010). There is also the issue of “power differences” in
which the participants may perceive that they are exploited by the researchers
(Hilton et al. 2010). Hilton et al. (2010) sought to be more inclusive in their study
and to effectively recruit African American participants. They were able to reach 58
families and all expressed an interest in participating. However, all but 8 were
excluded due to research protocol and inclusion criteria. The most frequent reasons
for disqualification for these families were lack of a full sibling and the lack of one
or both parents. The most effective tool for the recruitment of these families was the
inclusion of African American staff on the research team, monetary incentives, test
results and information about services in the community, and reimbursement for
child care expenses (Hilton et al. 2010). In addition to possible distrust in research
trails, there is reason to believe that African Americans may not agree with teacher
assessments that their children’s behavior was an indication of a disability (Lau
et al. 2004 as cited in Hilton et al. 2010).
Treatment Options for African Americans with the Diagnosis
of Autism
Based upon the current research and recommendations, researchers (Mandell et al.
2005; Cuccaro 2007) are in agreement that early intervention is the best course of
action for children diagnosed with autism. However, beyond the acceptability of
early intervention, types of treatments should be discussed and options made
available for families in seeking interventions. Gourdine et al. (2011) demonstrated
in their case study that even after early diagnosis, treatment options are elusive and
often a lack choice exists for the families.
Seitler (2011) asserts that studying treatment approaches for persons with autism
is tantamount to studying a “bullet in flight.” Attempts to studying treatment
efficacy are met with inconsistent data and a lack subjects who can participate
reliably in the research process. The models he reviewed were the following:
(1) Applied Behavioral Analysis is a highly intensive, structured model and behav-
iorally oriented program provided to the autistic child on a one-to-one basis;
(2) Learning Experiences: An Alternative Program for Preschoolers and Parents
(LEAP) is an integrated approach for children with a behavior management skills
approach; (3) Treatment and Education of Autistic and Related Communication
Handicapped Children (TEACCH) provides structured program to develop skills;
(4) Denver Health Sciences Program integrates children with autism with children
who have other behavioral issues; (5) Psychopharmacological Agents is the dis-
pensation of medications; (6) Special Gluten-free diets are programs where gluten
is removed from the diets; and (7) Chelation is a program where lead or other heavy
metals are removed from the body.
Odom et al. (2010) evaluated the comprehensive treatment models (CTMs) for
autism. Using an established evaluative model consisting of six criteria to insure
2462 R.M. Gourdine and C.L. Algood
each model meets standards in evaluation, they identified 30 CTMs. The criteria are
operationalization, implementation measures, replication, type of empirical evi-
dence, quality of research methodology, and complementary evidence from studies
of focused interventions. Opertionalization was strong; however, evidence of effi-
cacy was not strong. In sum, their assessment is that there are a set of CTMs that
have “fairly strong evidence for their model, while others have mixed evidence and
yet others have very weak evidence (Odom et al. 2010, 433)” (see article for full
description of CTMs). This evaluative project provides some information to parents
seeking treatment for their child with autism, but all of these models may not be
available to parents.
Silva et al. (2011) suggest another therapy that is gaining more attention is the
use of dogs as an aide to children with autism. Using a case study approach with
a 12-year-old boy, they conclude that the use of a dog may prime children with
autism to participate more fully in the demands of therapy.
This article mentioned several options for treatment, but these authors would
recommend additional research be conducted to determine if treatment type is
a factor in dealing with different racial/ethnic groups. Further, consideration should
be given as to the availability of these options for most families.
Cultural Inclusion
This article confirms the difficulty for African Americans to participate in the health
care system in a way that they feel respected and accepted. Autism has a relatively
short history in terms of research and society coming to grips with a misunderstood
disability. Many people may not have heard of autism a few years ago, and if they
knew of a person with autism, they saw it as a rarity. Now autism is being described
as an epidemic (Fombonne 2003). The theories that explained autism blamed
mothers for their child exhibiting the unexplained symptoms (Dyches et al.
2004). While mainstream society was getting a better understanding of this puz-
zling disability, those in the African American community may not have had that
opportunity. There have been more television shows about children with autism
(most were Caucasian) so that could be a false assumption that this disability has
not impacted the African Americans. Recent news and journal articles and elec-
tronic media sources have highlighted the problem in the African American com-
munity. In 2005 Poirier wrote in the Amsterdam News (a minority-owned paper in
New York City) an article entitled “Disparities in medical treatment for African
American families living with autism.” This article brought attention to this dis-
ability in the African American community and listed Wanda Brown who started
a Web site AutismConcepts.com as a resource to African Americans. In Atlanta,
GA, Camille Parker started the Color of Autism Foundation in 2009 who is another
pioneer in educating the African American community about autism. In
a subsequent article, the New York Amsterdam News (Williams 2010) highlighted
the issue of disparities in diagnosis and treatment of autism in communities of color.
Autism in the African American Population 2463
The same newspaper highlighted the disparities related to school funding with
communities of color receiving substantially less money to fund programs
(2012). These efforts are helpful in getting the African American community on
board with understanding and advocating for their children to get the proper
services they need to treat autism. Further, prominent African Americans are
sharing their challenges with their children who have autism such as actress
Holly Robinson-Peete (Brown 2008) and songstress Toni Braxton. Both have
become national spokespersons for autism.
These actions are important in that African American families have not been the
ones who shied away from issues of disabilities as researchers have noted that
caregiver burden and level of stress are less than those of whites (see Pruchno et al.
1997; Rogers-Dulan and Blacher 1995). Similarly, their study related specifically to
mothers of children with autism (Bishop et al. 2007) found less perceived negative
impact by African American families in raising their child than white parents. Some
researchers (Daly et al. 1995; Rogers-Dulan and Blacher 1995; Neeley-Barnes et al.
2004; Gourdine et al. 2011) have attributed the positive adjustment to raising
a child with disability such as autism by African American families to the strong
extended family network and the role of religion and the church.
As indicated in this article, health disparities exist for African Americans and
equitable services for African American children with autism cannot be achieved if
these disparities continue and there is lack of sensitivity to different cultural norms
and a perception of inferiority exists.
Key Terms
African American/Black. Oftentimes in the United States, these terms are used
interchangeably in written texts.
ASD. An acronym that means autism spectrum disorder (Collins et al. 2006).
Autism Diagnostic Interview-Revised. An instrument used to gather data to confirm
an autism diagnosis and can be used for analysis purposes (Cuccaro 2007).
Autism Genetic Resource Exchange (AGRE). A registry of behavioral data (Hilton
2010).
CTMs. Comprehensive treatment models for treatment of autism (Odom et al. 2010).
DSM-IV-TR Diagnostic Statistical Manual. Categorization system used to diagnose
mental illness and the number indicates the revisions that have been conducted
on the manual (Hilton et al. 2010).
Health Disparities. A term used when access to health is limited by a number of
factors. In this case it refers to the limitation of African Americans to obtain
services in the diagnosis of autism (Sell et al. 2012).
Interactive Autism Network (IAN). Volunteer resource family registry used to
accelerate autism research through the use of the Internet (Hilton et al. 2010).
PDD-NOS. An acronym for the terms Pervasive Developmental Disorder Not
Otherwise Specified (Mandell and Novak 2005).
2464 R.M. Gourdine and C.L. Algood
Key Facts
Autism among African Americans occurs at the same rates as other populations.
Autism among African Americans is typically diagnosed later than Caucasians.
African Americans are not diagnosed with autism on first specialty visit as they
are typically diagnosed as having a behavior or a conduct disorder.
There is very little research conducted on African American families as it relates
to autism.
We are not sure what treatment options are available to African Americans and if
they are administered in a culturally competent way primarily because of the late
diagnosis.
Treatment models have not been tested racially or ethnically.
African American families are not typically included in genetic research on
autism at the rates they should, so it is not likely that phenotypic differences can
be accounted for in research studies.
Summary Points
This article focused on the issue of disparities as it relates to African American
families and access to diagnostic services to gain a diagnosis of autism.
This article confirms disparities exist in all areas of health coverage for African
Americans.
This articles raises the issue that there may be phenotypic differences in the way
autism manifest itself in African Americans.
The article discusses the limitations that exist for African Americans in research
on autism.
This article discusses through the use of research studies the reactions African
Americans may have toward diagnosis and subsequent services.
This article addresses the need for service providers to admit any biases they
may have in providing diagnostic or intervention services to African Americans.
This article provides a brief description of some treatment models.
This article also addresses the advocacy occurring in African American com-
munities to educate families about this disability and bring the subject into
a public view. This hopefully will bring forth opportunities for expanded
research on autism in the African American community.
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Autism in the African American Population 2467
... A barrier that we did not address in this tutorial is existing disparities in access to health care. Prior to the pandemic, Black and Latinx children with ASD were less likely to access intervention services than White children with ASD (Gourdine & Algood, 2014;Liptak et al., 2008;Sell, Giarelli, Blum, Hanlon, & Levy, 2012;K. A. Smith, Gehricke, Iadarola, Wolfe, & Kuhlthau, 2020). ...
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Due to the pandemic brought on by the novel coronavirus (COVID-19), consumers of applied behavior-analytic interventions may be experiencing disrupted access to services. In response to the need for services, behavior analysts and therapists may find themselves treading unchartered waters as they use telehealth to provide direct intervention to consumers. Direct service provision via telehealth extends beyond the bounds of existing telehealth research, which primarily focuses on caregiver training and consultation. In the transition to telehealth, behavior analysts can consider how to adapt an existing evidence base of behavior-analytic strategies from a face-to-face format to intervention via a teleconferencing platform (i.e., Zoom). In this tutorial, we provide practice recommendations, task analyses, and a curated list of Zoom walk-throughs to help behavior analysts construct conceptually systematic learning opportunities in their direct telehealth services. Leveraging teleconferencing features to provide behavior-analytic intervention directly to consumers could spur future research to support these need-inspired practices and guide telehealth applications during and beyond the current pandemic. Supplementary information: The online version contains supplementary material available at 10.1007/s40617-020-00529-5.
... First, a lack of representation will only further deter BIPOC from pursuing careers in behavior analysis (Estrada et al., 2016;Flores et al., 2019). Second, the dearth of minority voices will likely result in important cultural variables being ignored or absent from crucial policy decisions (Gourdine & Algood, 2014). Such oversight may not necessarily be intentional, as individuals are not always aware of the knowledge that they lack. ...
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Sparked by recent events, discussions of systemic racism and racial inequalities have been pushed to the foreground of our global society, leading to what is being called the largest modern-day civil rights movement (Buchanan et al., 2020). In the past, Black, Indigenous, and People of Color (BIPOC) activists and scholars, among others, have evaluated and critiqued systems and organizations within our society. Nonetheless, it was not until recently that this movement was truly noticed by a greater number of people, some of whom are now further assessing how BIPOC are viewed and treated within their organization and by society as a whole (Worland, 2020). This is not only due to the increase in video evidence (e.g., released body cam footage, social media postings), but also the previous administration’s rhetoric and political agenda (Hubler & Bosman, 2021). Police departments, educational institutions, and large companies have, for decades, been under scrutiny for their systems and practices that promote racism, inequality, and inequity. The field of behavior analysis, with its Eurocentric roots and observed lack of diversity, equity, and inclusion, is not exempt from such evaluations. It is time that we take a look in the mirror and evaluate our own professional, research, educational, and clinical practices, and work towards creating a new, more inclusive, field of behavior analysis that promotes anti-racism and cultural humility.
... First, a lack of representation will only further deter BIPOC from pursuing careers in behavior analysis (Estrada et al., 2016;Flores et al., 2019). Second, the dearth of minority voices will likely result in important cultural variables being ignored or absent from crucial policy decisions (Gourdine & Algood, 2014). Such oversight may not necessarily be intentional, as individuals are not always aware of the knowledge that they lack. ...
Preprint
Full-text available
Sparked by recent events, discussions of systemic racism and racial inequalities have been pushed to the foreground of our global society, leading to what is being called the largest modern-day civil rights movement (Buchanan et al., 2020). In the past, Black, Indigenous, and People of Color (BIPOC) activists and scholars, amongst others, have evaluated and critiqued systems and organizations within our society. Nonetheless, it was not until recently that this movement was truly noticed by a greater number of people, some of whom are now further assessing how BIPOC are viewed and treated within their organization and by society as a whole (Worland, 2020). This is not only due to the increase in video evidence (e.g., released body cam footage, social media postings), but also to the previous administration’s rhetoric and political agenda (Hubler & Bosman, 2021). Police departments, educational institutions, and large companies have, for decades, been under scrutiny for their systems and practices that promote racism, inequality, and inequity. The field of behavior analysis, with its Eurocentric roots and observed lack of diversity, equity, and inclusion, is not exempt from such evaluations. It is time that we take a look in the mirror and evaluate our own professional, research, educational, and clinical practices, and work towards creating a new, more inclusive, field of behavior analysis that promotes anti-racism and cultural humility.
... A barrier that we did not address in this tutorial is existing disparities in access to health care. Prior to the pandemic, Black and Latinx children with ASD were less likely to access intervention services than White children with ASD (Gourdine & Algood, 2014;Liptak et al., 2008;Sell, Giarelli, Blum, Hanlon, & Levy, 2012;K. A. Smith, Gehricke, Iadarola, Wolfe, & Kuhlthau, 2020). ...
Preprint
Due to the pandemic brought on by novel Coronavirus-19 (COVID-19), consumers of applied behavior analytic interventions may be experiencing disrupted access to services. In response to the need for services, behavior analysts and therapists may find themselves treading unchartered waters as they use telehealth to provide direct intervention to consumers. Direct service provision via telehealth extends beyond the bounds of existing telehealth research, which primarily focuses on caregiver training and consultation. In the transition to telehealth, behavior analysts can consider how to adapt an existing evidence base of behavior analytic strategies from a face-to-face format to intervention via a teleconferencing platform (i.e., Zoom). In this tutorial, we provide practice recommendations, task analyses, and a curated list of Zoom walk-throughs to help behavior analysts construct conceptually systematic learning opportunities in their direct telehealth services. Leveraging teleconferencing features to provide behavior analytic intervention directly to consumers could spur future research to support these need-inspired practices and guide telehealth applications during and beyond the current pandemic.
... Multiple studies have concluded early autism detection and treatment leads to better outcomes in cognitive and language abilities (Rogers and Vismara 2008), yet many Black children are identified after the window of early intervention closes. Once diagnosed, Black families regardless of socioeconomic status or educational attainment, have reduced access to intervention services (Longtin and Principe 2016;Gourdine and Algood 2014). ...
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... Children of privileged and/or Caucasian families have been overrepresented, and families of lower socioeconomic status (SES) and of minority racial and ethnic backgrounds have traditionally been underdiagnosed (Durkin et al. 2010;Fountain et al. 2011). Although community awareness of ASD has begun to reduce these racial and socioeconomic disparities, group differences remain (CDC 2014;Gourdine and Algood 2014;Pedersen et al. 2012;Zuckerman et al. 2013). ...
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Having a consistent source of medical care may facilitate diagnosis of autism spectrum disorders (ASD). This study examined predictors of age of ASD diagnosis using data from the 2011-2012 National Survey of Children's Health. Using multiple linear regression analysis, age of diagnosis was predicted by race, ASD severity, having a consistent source of care (CSC), and the interaction between these variables after controlling for birth cohort, birth order, poverty level, parental education, and health insurance. While African American children were diagnosed earlier than Caucasians, this effect was moderated by ASD severity and CSC. Having a CSC predicted earlier diagnosis for Caucasian but not African American children. Both physician and parent behaviors may contribute to diagnostic delays in minority children.
... Children of privileged and/or Caucasian families have been overrepresented, and families of lower socioeconomic status (SES) and of minority racial and ethnic backgrounds have traditionally been underdiagnosed (Durkin et al. 2010;Fountain et al. 2011). Although community awareness of ASD has begun to reduce these racial and socioeconomic disparities, group differences remain (CDC 2014;Gourdine and Algood 2014;Pedersen et al. 2012;Zuckerman et al. 2013). ...
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We sought to examine racial and ethnic disparities in the recognition of autism spectrum disorders (ASDs). Within a multisite network, 2568 children aged 8 years were identified as meeting surveillance criteria for ASD through abstraction of evaluation records from multiple sources. Through logistic regression with random effects for site, we estimated the association between race/ethnicity and documented ASD, adjusting for gender, IQ, birthweight, and maternal education. Fifty-eight percent of children had a documented autism spectrum disorder. In adjusted analyses, children who were Black (odds ratio [OR] = 0.79; 95% confidence interval [CI] = 0.64, 0.96), Hispanic (OR = 0.76; CI = 0.56, 0.99), or of other race/ethnicity (OR = 0.65; CI = 0.43, 0.97) were less likely than were White children to have a documented ASD. This disparity persisted for Black children, regardless of IQ, and was concentrated for children of other ethnicities when IQ was lower than 70. Significant racial/ethnic disparities exist in the recognition of ASD. For some children in some racial/ethnic groups, the presence of intellectual disability may affect professionals' further assessment of developmental delay. Our findings suggest the need for continued professional education related to the heterogeneity of the presentation of ASD.
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It is estimated that autism spectrum disorders (ASD) affect 1 in 500 live births per year. However, due to varying techniques for diagnosis and treatment, the disability remains the subject of debate. African Americans tend to suffer disproportionate rates of disability and disease when compared to other racial and ethnic groups due to access to preventative and curative care. However, evidence demonstrates that although rates of diagnosis for autism occur at the same rates in all racial groups, diagnosis in African American children occurs later than in White children. As a result, African American children may require longer and more intensive intervention. This article examines the etiology of autism, diagnosis, and treatment strategies and its impact on African American families. A case method approach is utilized to describe the impact of autism on an African American family. Implications for future research and professional practice and policy are discussed. Understanding autism is important as it relates to the human genome.
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A model is developed and tested that explains the effects of race on the caregiving experience by patterning relationships between race and several causal agents. Data from 741 White and 100 African American women with adult children having chronic disabilities revealed that while the African American and White subsamples differed from one another in terms of age, education, income, living arrangements, physical health, caregiving burden, and caregiving satisfaction, race had no direct or indirect influence on either caregiving burden or caregiving satisfaction. Rather, variables representing the sociocultural, interpersonal, situational, temporal, and personal contexts which relate to race explained the observed variance in both caregiving burden and caregiving satisfaction.
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To develop independence and self-responsibility in students With autism, traditional intervention techniques have focused on the acquisition of academic learning and adaptive skills of language and communication and the reduction of behavior problems. The critical question is, Will these traditional foci of intervention Work for multicultural students With autism? These students have triple-layered problems—they are culturally different, they may be linguistically different, and they have an exceptionality that is loaded With behavioral repertoires. Apparently, these challenges make it imperative for general and special education practitioners to look for Ways to educate multicultural learners With autism. In this article, the authors present culture-specific strategies for meeting the educational needs of students With autism. In addition, they relate these strategies to current efforts to prepare teachers and other professionals to assist students and their families.
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Discusses traditional African cultural patterns and the development of African American survival mechanisms that shape and foster effective coping skills at the individual, family, community, and organizational levels. The African American community has served as a buffer between African Americans and the dominant community in developing effective coping and success. Furthermore, the African American community has developed effective problem-solving strategies in response to its needs when the dominant culture excluded it from services and has developed creative responses to new challenges. These strategies and responses are rooted in African cultural traits. Implications for social work practice and research are suggested. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
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Racial differences are documented in the timing and type of autism spectrum disorder (ASD) diagnosis among white and African American children. Differences in clinical presentation by race may contribute to these disparities. This study explores documented differences in core ASD symptoms and associated behavioral features among African American and white children. This project is a secondary data analysis from the Pennsylvania Autism and Developmental Disabilities Surveillance Program and utilized methodology that evaluates existing records, reviews, and codes for DSM-IV criteria for ASD and 12 associated behavioral features. The sample comprised 343 children meeting surveillance case definition for ASD, from 3 population-based cohorts of children in Philadelphia County. A higher frequency of white children compared to African American children with ASD have documented DSM-IV criteria of inflexible adherence to nonfunctional routines/rituals (92% vs 81%; p = .005) and persistent preoccupation with parts of objects (67% vs 50%; p = .002). A higher frequency of white children with ASD compared to African American children with ASD have documented abnormal motor development (74% vs 60%; p = .008) and odd responses to sensory stimuli (76% vs 51%; p < .001). There were no significant differences in externalizing behaviors or reciprocal social interaction. This study suggests differences in the types of ASD symptoms and associated behavioral features exhibited by African American as compared to white children with ASD. Further research is needed to determine if these differences contribute to disparities in the timing or type of ASD diagnosis.
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The reported prevalence of autism spectrum disorder (ASD) has increased dramatically since the 1980s. In response, researchers, educators, and policy makers have sought to develop effective technologies for assessment and intervention. A focus on evidenced-based practices is logical, given significant deficits in language, social interaction, cognition, and adaptive behavior that comprise these conditions. Although critical, a technology of best practices is insufficient without understanding the important role that diversity plays in helping persons with ASD, particularly those with the most severe impairments, to lead fulfilling lives. The aim of the current article is threefold. First, we explore the concept of diversity with particular attention to neurodiversity among persons with ASD.We describe how cultural and linguistic diversity influence identification of students with ASDin special education, with data to suggest that racially diverse students are underrepresented in the autism category. We then examine the educational process with particular focus on the impact of parent and family culture on perception of disability, the influence of diverse family systems on interventions, and the successful interventions for diverse contexts. We conclude with recommendationsfor culturally competent practice and research.
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Background and objectives: Canine-assisted therapy has been receiving growing attention as a means of aiding children with autism spectrum disorder (ASD). Yet, only limited studies have been done and a great deal of literature related to this intervention is anecdotal. The present study aims at providing additional quantitative evidence on the potential of dogs to positively modulate the behavior of children with ASD. Settings/location, subjects, and interventions: A 12-year-old boy diagnosed with ASD was exposed, at his usual treatment location (the Portuguese Association for Developmental Disorders and Autism at Vila Nova de Gaia, Portugal), to the following treatment conditions: (1) one-to-one structured activities with a therapist assisted by a certified therapy dog, and (2) one-to-one structured activities with the same therapist alone (as a control). To accurately assess differences in the behavior of the participant between these treatment conditions, the therapist followed a strict research protocol. The behavior of the participant was continuously video-recorded during both treatment conditions for further analysis and comparison. Treatment outcomes: In the presence of the dog, the participant exhibited more frequent and longer durations of positive behaviors (such as smiling and positive physical contacting) as well as less frequent and shorter durations of negative behaviors (such as aggressive manifestations). Conclusions: These findings are in accordance with previous experimental work and provide additional support for the assertion that dogs can prime autistic children for therapy. Ultimately, this study may contribute toward a change for full acceptance of canine-assisted therapy programs within the medical milieu. Additional studies using a similar research protocol on more autistic children will certainly help professionals to work on the most effective methods to individually serve this population through canine-assisted interventions.