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Journal of Autism and
Developmental Disorders
ISSN 0162-3257
J Autism Dev Disord
DOI 10.1007/s10803-015-2482-x
African American Families on Autism
Diagnosis and Treatment: The Influence of
Culture
Karen Burkett, Edith Morris, Patricia
Manning-Courtney, Jean Anthony &
Donna Shambley-Ebron
1 23
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ORIGINAL PAPER
African American Families on Autism Diagnosis and Treatment:
The Influence of Culture
Karen Burkett
1
•Edith Morris
2,3
•Patricia Manning-Courtney
1
•
Jean Anthony
2
•Donna Shambley-Ebron
2
Springer Science+Business Media New York 2015
Abstract Cultural factors such as health care access and
autism spectrum disorder (ASD) symptom interpretations
have been proposed as impacting delayed diagnosis and
treatment for African American children with ASD. A
qualitative study of urban African American families car-
ing for their child with autism was conducted with 24
family members and 28 ASD professionals. Cultural caring
meant families protected their child from harm including
potential or actual distrustful encounters, and took action
for their child and community to optimize their child’s
health and address the knowledge deficits of ASD within
their community. Families and professionals believed cul-
tural influences delayed families’ receiving and seeking
appropriate health care for the African American child with
ASD affecting timely autism diagnosis and treatment.
Keywords Autism spectrum disorder Health care
disparities African American families Cultural factors
ASD diagnosis
Introduction
Delays in the diagnosis and treatment of autism spectrum
disorder (ASD) among African American children repre-
sent a substantial health care disparity in the United States
and are presumed due to cultural differences in health care
received or sought by African American children and their
families (Clark 2014; Cuccaro et al. 2007; Grinker et al.
2011; Mandell and Novak 2005; Mandell et al. 2009;
Smedley et al. 2002). The purpose of this paper is to pre-
sent findings from an ethnographic study of urban African
American families caring for children with autism and
perspectives of ASD health care professionals (HCP) that
are relevant to the influence of culture on ASD diagnostic
and treatment delays.
The clinical phenotype of ASD is not thought to differ
by race yet the prevalence differs across racial groups
(Grinker et al. 2011; Mandell et al. 2009; Valicenti-
McDermott et al. 2012; Yeargin-Allsopp et al. 2003). The
source of these differences is described as longer delays in
diagnosing African American than Caucasian children with
ASD. A key specific difference includes obtaining the ASD
diagnosis for African American children 1.6 years later
than Caucasian children (Mandell et al. 2002). African
American children are also 2.6 times more likely to be
misdiagnosed than Caucasian children, including 5.1 times
more likely to receive a misdiagnosis of adjustment dis-
order and 2.4 times more likely to receive a conduct dis-
order misdiagnosis (Mandell et al. 2007). African
American children meeting ASD diagnostic criteria are less
likely than Caucasian children to have a prior ASD diag-
nosis, but more likely to have co-occurring ASD and in-
tellectual disability diagnoses (Baio et al. 2014; Bhasin and
Schendel 2007; Mandell et al. 2009). Lastly, African
American children are more likely to be diagnosed with
The manuscript was prepared from the principal investigator’s
doctoral dissertation and a version of this paper was presented at the
International Meeting for Autism Research (IMFAR) and the Society
of Developmental and Behavioral Pediatrics annual meetings.
&Karen Burkett
Karen.Burkett@cchmc.org
1
Developmental and Behavioral Pediatrics, Cincinnati
Children’s Hospital Medical Center, 3333 Burnet Avenue,
ML4002, Cincinnati, OH 45229, USA
2
College of Nursing, University of Cincinnati, Cincinnati, OH,
USA
3
Nursing Research in Patient Services, Center for Professional
Excellence, Cincinnati Children’s Hospital Medical Center,
Cincinnati, OH, USA
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DOI 10.1007/s10803-015-2482-x
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autism rather than Asperger subtype when compared with
Caucasian children (Baio et al. 2014). In summary these
studies demonstrated African American children were
more often diagnosed later, misdiagnosed, and with more
severe ASD than Caucasian children.
Cultural Factors in ASD Diagnosis and Treatment
Multiple cultural factors have been theorized as affecting
early diagnosis and timely interventions for the African
American child with ASD such as HCP diagnostic bias,
health care accessibility, symptom presentation, and family
interpretation of the child’s symptoms (Kalb et al. 2012;
Liptak et al. 2008; Mandell et al. 2005,2007,2009). Bias
of a HCP in rendering the ASD diagnosis has been dually
defined as fluctuating HCP behaviors with patients of un-
like cultures and HCP expectations about diagnosis and
treatment that differ by culture (Mandell et al. 2002;
Smedley et al. 2002). The Institute of Medicine (2002)
reported that HCPs can display unequal behaviors in health
care interactions and make recommendations that differ by
cultural groups, reflecting general stereotypes about health
behaviors that represent barriers to diagnosis and treatment.
For the African American child with ASD, diagnostic de-
liberations may be confounded if a HCP believes there is
decreased likelihood of ASD and may not screen or in-
terpret symptoms as quickly (Mandell et al. 2002,2007,
2009; Smedley et al. 2002).
Poorer health care access for African American children
has been proposed as a factor in ASD diagnostic delays;
however the findings are conflicting whether institutional
or socioeconomic factors are more contributory (Liptak
et al. 2008; Mandell et al. 2010a,b; Montes and Halterman
2011; Shattuck etal. 2009; Thomas et al. 2012). At an in-
stitutional level, varying policy and public services for
ASD locally and regionally, missed health care visits and
lack of family centered care are cited as barriers to earlier
ASD diagnosis for African American children (Liptak et al.
2008; Lord and Bishop 2010; Mandell et al. 2010a,b;
Montes and Halterman 2011; Ruble et al. 2005; Sansosti
et al. 2012). Two studies citing institutional barriers were
adjusted for family income and found African American
families remained more dissatisfied with the quality of their
child’s health care than Caucasian families of children with
ASD (Liptak et al. 2008; Sansosti et al. 2012). Studies that
examined socioeconomic status (SES) and ASD diagnosis
reported African American children from low income
families were consistently associated with delayed diag-
noses, but when controlled for SES African American
children with ASD were less likely to have adequate access
to health care across incomes (Bhasin and Schendel 2007;
Fountain et al. 2011; Jarquin et al. 2011; Liptak et al. 2008;
Magana et al. 2012; Mandell et al. 2010a,b; Rosenberg
et al. 2011; Thomas et al. 2012; Valicenti-McDermott et al.
2012).
Presenting symptoms of ASD and family interpretations
of symptoms may also differ by cultural group. Some in-
vestigators maintain an uncertainty about the differences in
symptom presentation for African American children
(Cuccaro et al. 2007; Valicenti-McDermott et al. 2012),
while others believe the heterogeneity of ASD symptom
presentation to be affected by cultural norms (Grinker et al.
2011; Lord and Bishop 2010; Mandell et al. 2007; Tek and
Landa 2012). Recent studies reported that more Caucasian
children than African American children were diagnosed
on the milder spectrum of ASD, suggesting that cultural
differences may confuse the severity of the diagnosis (Baio
et al. 2014; Jarquin et al. 2011). African American family
beliefs and interpretations of symptoms have been
relatively unexplored, despite some ASD investigators
noting that the diagnosis may be assigned differentially by
the child’s culture due to misinterpreted HCP and family
interactions (Barton et al. 2012; Bhasin and Schendel 2007;
Jarquin et al. 2011; Mandell et al. 2007).
The aggregate of these proposed cultural factors reveals
a need for exploratory research with African American
families to discover their cultural perspectives on caring for
children with ASD and the perceptions of family care
among ASD professionals. Previous studies examining the
delayed diagnosis and treatment of African American
children with ASD have unequivocally implicated the in-
fluences of culture; however research that explicates the
cultural values, beliefs and practices of families caring for
a child with ASD has not been undertaken.
Methods
Study Design
The phenomena related to the cultural meanings of care,
cultural practices and cultural ways of living of urban
African American families caring for their child with aut-
ism were explicated through the ethnonursing qualitative
method. Ethnonursing is a type of ethnographic study that
focuses on the interrelationships of culture and care within
the natural environments of people (Leininger and
McFarland 2002; McFarland and Wehbe-Alamah 2015).
The study was theoretically framed and data interpretation
guided by Culture Care Diversity and Universality theory;
a theory conceptualized within the dominant concepts of
culture and care (McFarland and Wehbe-Alamah 2015).
The study purpose was to discover the meanings of care
(care meanings) within the culture, as well as the beliefs
and practices of urban African American families caring
for their child with autism. This was accomplished through
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an in-depth exploration of insider or key participant per-
spectives (family members) and outsider or general par-
ticipant perspectives (autism professionals) relevant to
family care within the context of the African American
culture. The goal of Culture Care Diversity and Univer-
sality theory is providing culturally congruent care through
care modalities that guide health care judgments, decisions
or actions (McFarland and Wehbe-Alamah 2015). The re-
search questions explored pertinent to this study included:
(1) What are the care meanings, practices, expressions and
ways of living of urban African American families that
influence the health and wellbeing of their children with
autism? and (2) How does family care and professional
care interface to promote health and wellbeing for the child
with autism?
Participants, Procedures and Setting
In-depth field observations and interviews were conducted
with 24 African American family members of children
with autism, comprising 8 families. Key participants were
family members (insiders) who included 8 mothers, 5 fa-
thers, and the remaining 11 family members made up of
grandmothers, siblings, aunts, uncle and cousins. Key
participants were recruited using purposeful selection from
a developmental clinic in a Midwestern pediatric hospital.
Inclusion criteria encompassed family members who were
engaged in the care of the child with autism, self-identified
as African American, and were over 18 years old. All
participants gave their informed consent prior to their in-
clusion in the study. Of the 8 family groups, 5 were two
parent homes and 3 families were headed by single
mothers. Parental age was 28–58 with most parents in their
mid-30 s. Half of the families had incomes below the
poverty level living in government housing, while the re-
maining families had lower incomes but were above the
poverty level. All family members had at least a high
school education, including grandparents. Additional
family characteristics by family structure are noted in
Table 1. All of the children had a medical diagnosis of
autism obtained before the age of 4 years and following a
multidisciplinary evaluation that included a Developmental
Pediatric evaluation, assessment with the Autism Diag-
nostic Observation Schedule (ADOS) and psychological
evaluation. The children ranged in age from 3 to 8 years
and included 6 boys and 2 girls with further child charac-
teristics by age described in Table 2.
Additional interviews were conducted with 28 profes-
sional general participants (outsiders), who provided care
in ASD developmental clinics and urban ASD classrooms.
The general participants had a broad knowledge of the care
of the African American child with autism, and 18 HCP
were interviewed in groups with 10 interviewed indi-
vidually. The objective of the interviews with HCPs was to
identify how family care was perceived outside of parent-
ing a child with autism. The HCP participants included
psychologists, therapists, ASD classroom teachers, re-
searchers, developmental pediatricians, a nurse practition-
er, and included 26 Caucasian and 2 African American
general participants.
A gradual process of immersion into the cultural group
was used to facilitate participants’ sharing their ideas in
natural and casual ways. Procedures that facilitated im-
mersion were focused observations, active listening, in-
creasing levels of investigator participation, and reflection
and reconfirmation of findings with participants in their
natural setting. Data was captured in extensive field notes
prior to conducting the in-depth interviews. The process of
immersion with each family group occurred over 6 months
and involved engaging with the family members in their
homes and wherever the investigator was invited by the
key participants. Additional field observations occurred in
other naturalistic settings such as the child’s therapy,
school, clinic, church and community sites.
Data Analysis and Qualitative Evaluation Criteria
for Rigor
Leininger’s phases of ethnonursing analysis were the
blueprint for data analysis (Leininger and McFarland 2002;
McFarland and Wehbe-Alamah 2015) beginning with the
early phases that included collecting, describing observa-
tions and interviews that were transcribed verbatim and
codes identified in the data. The final phases focused on
Table 1 Family characteristics by family structure
Characteristics Single parent home (3 families) Dual parent home (5 families)
Income below poverty level 100 % 20 %
Subsidized housing 100 % 20 %
Unemployed (at least 1 family member) 100 % 60 %
At least high school education 100 % 100 %
Other family members in home 0 80 %
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identifying patterns of family values, beliefs and practices
from the codes that emerged as universal and diverse
themes about care meanings and practices from an insider
(family) and outsider (professional) perspective. Universal
culture care themes are those themes that were similarly
shared among the key participants while diverse culture
care themes reflected the variations and differences among
the key participants resulting from diversities in values and
ways of living (McFarland and Wehbe-Alamah 2015).
The rigor of this ethnographic study was evaluated using
the qualitative criteria of credibility, confirmability, re-
current patterning, meaning-in-context and saturation of
the data (Leininger and McFarland 2002). Investigator
observations, participation and reflections were ongoing
throughout the study and satisfied the evaluative criteria for
credibility demonstrating truth in the findings. Confirma-
bility criteria was met when repeated descriptions from the
participants reaffirmed the investigators’ observations and
reflections over the study timeframe of 2 years, whereas
meaning-in-context was achieved as the data was inter-
preted in the context of their child’s disability and the
participants’ urban environment. Recurrent patterning was
evaluated in the repeated experiences and patterns found in
participants’ descriptions, and data saturation reached just
prior to the last data being collected and no new discoveries
coming forth.
Results
Two universal culture care themes relevant to diagnostic
and treatment delays in ASD among African American
children emerged and are listed in Table 3. For urban
African American families caring for their child with aut-
ism, cultural care meant both providing protection for their
child with autism and taking action for their child, their
family and their community. These two themes help to
extend our understanding of the cultural influences in de-
lays to diagnosis and treatment that may affect families
receiving or seeking health care for their child with ASD.
Additional results are presented on family members’ per-
spectives about professional health care relative to health
care access.
Theme I: Providing Protection—Pushing
Independence and Watchful over Child’s Safety
Urban African American families experienced unequal
treatment in health and community care, distrust of clinical
health care, and the need for protective care all of which
affect receiving or seeking appropriate health care for their
child and could result in delays in the diagnosis and
treatment of autism. Families believed that providing pro-
tection was crucial to their child’s health and well-being.
Family participants (insiders) provided protection through
promoting their child’s independence in self-care. They
pushed their child to be independent in daily activities such
as dressing, cleaning up, making their own lunches and by
treating their child ‘‘as normal’’:
K-1a He’ll spill, you know whatever’s in the cup out,
and throw something on the floor, and I make him
pick it up. I treat him just like any normal kid ‘cause
I’m not gonna let him use that for an excuse. You
know? Autism.
Treating their child as ‘‘normal’’ ensured the child’s
independence to the extent they were capable and as a way
to prevent their child from experiencing discriminatory
ways faced by African Americans as a minority culture. As
K-1a shared, ‘‘And we knew we had to push them because
you know it’s prejudice and we pushed them because we
know they had to at least be able to take care of themselves
and be self-sufficient’’, whilst another mother related the
reasons independence was critical to her child:
K-2a I have to do that because [my child] has three
strikes against her. She’s Black, she’s a girl and she
has a disability. Because my thing is I already know
what the world is going to do to her. Soon as she’s
opens her mouth and she sounds different or looks
different and she’s Black and she’s a girl. And she
has autism–get out of here…To get her where she
needs to be. That’s my job…Should not be slacking
on [my child] because she is autistic. Means nothing
to me–the world doesn’t care. People will prey on
that. I prepare her for what I can prepare her for.
Table 2 Child characteristics
by age Characteristics 3–5 years (4 children) 6–8 years (4 children)
Prematurity 25 % 25 %
Diagnosis \4 years old 100 % 100 %
Developmental delay/Intellectual disability 100 % 100 %
Nonverbal 25 % 50 %
Student in ASD-only classroom 100 % 0
In family adoption 50 % 0
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Observations from 75 % of the HCP participants (out-
siders) affirmed that African American children with ASD
showed higher functional skills than was typically ex-
pected, which could presumably be related to their inde-
pendence in self-care and contribute to diagnostic delays if
their independence was misinterpreted by the family or
clinician.
Families also provided protection by being watchful of
their child’s safety in multiple settings, but in particular
health and educational care. Their watchfulness was rooted
in the belief that their child’s disability posed threats to
their safety. The safety concerns most frequently cited
were: child’s inability to communicate, elopements, and
approaching strangers. Families feared their child’s dis-
abilities would lead to mistreatment or abuse in health care
or educational environments all of which could influence
families postponing health care for their child.
In the health care environment, families were watchful
due to an inability to assume their child would be treated
equally, which could contribute to delays in seeking health
care. K6a shared, ‘‘I think a big part of health care [for
Black children] is how persistent parents are.’’ A HCP
participant (minority outsider) explained the differing
perspectives when African American and Caucasian
families engage in health care:
G-17 [In the White community] it’s an automat-
ic…assumption that ‘‘I will be received well no
matter what’’. But that’s not the case …for most
people of color…[People] see color first and there-
fore the treatment follows that color.
Families expressed distrust of health care describing
clinical encounters as potential or actual differences in
their child’s care compared with the dominant culture.
Families narrated stories of HCPs who did not listen or did
not take action on their conveyed concerns for their child,
such as disregarding precautions about how their child
takes medications or being denied a referral for speech
therapy. Over half the family participants believed that
HCPs who took government insurance did not provide
equal health care to African Americans and endorsed
health care distrust as cultural knowledge within the
African American community. Despite this distrust in
health care, family members believed that most HCPs were
trustworthy and could help their child even though the
encounters varied among clinics:
K-6a There are only two [discriminatory] encounters
I had, but just at that [clinic]. Because any other
[clinic] I’ve been to has been pretty good. There they
don’t look at your color they look at you as a pa-
tient….They are like hey, ‘‘this is [child’s name] and
this is how she is.’’
For urban African American families caring for their child
with autism, family protective care meant protecting their
child by promoting independence, being watchful, and
trusting, notwithstanding the social and health care
inequalities that could contribute to delays in the diagnosis
and treatment of autism.
Theme II: Taking Action for Child, Family,
and Community
Urban African American families experienced the need to
take action for their child, family and their community out of
love and recognition of their child’s health care needs, and
in order to balance the differences in their community’s
knowledge of autism and disability all of which influenced
Table 3 Universal themes and culture care constructs
Themes: Culture care for urban African American families who care for their child with autism
meant…
Culture Care Constructs: Concepts of
family caring as…
Providing protection through promoting child’s independence:
by treating child ‘‘as normal’’
being watchful over child’s safety in health and education environments
as a means to accommodate for prejudice
as a means to lessen the burden on others
Providing protection was a way to alleviate the care differences and build up trustworthy supports
for their child’s health and wellbeing
Protecting
Promoting independence
Being watchful
Trusting
Taking action for their child and making choices out of love for their child and family:
by choosing therapeutic and habilitative actions for their child within a family context
by restructuring unhealthy lifestyles around decline in family traditions, generations of single
parenting, poverty and limited education
by acting to alleviate the social unacceptability of disability in the community
Taking action was a way to further the wellbeing of their child, their family and the community
Action for others
Habilitative
Love for others
Community awareness
Alleviation of (social) pain
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health care accessibility to their child’s diagnosis and
treatment for autism. Families believed that taking
therapeutic action on behalf of their child, family and
community was vital to their child’s health and well-being.
Taking Action for Child and Family
Urban African American families believed that taking ac-
tions and making choices out of love for their child while
balancing their child and family well-being was necessary
in order to access health care for their child with autism.
Actions for their child ranged from seeking an accurate
diagnosis to procuring ASD resources and therapeutic
treatments. Family members always approached their kin
first when concerned that something was wrong with their
child. Kin included filial or fictive family members who
were vital to the child’s care across multiple generations.
K-2a expressed her concerns and initial discussion with her
mother, ‘‘…as your child gets older you notice she’s two
and she’s not doing this. I’m like Mom ‘have you noticed
that she is not talking.’…I said ‘something ain’t right.’’’
Families were not immobilized by getting the diagnosis
and took action expressing coping strategies such as K-3a,
‘‘We just deal with it’’, or K-4a by ‘‘not pretending that
nothing was wrong’’ as K-2a expressed, ‘‘You do what you
got to do, not what you want to do. That is the motto.’’
Families accessed ASD treatments tapping into multiple
sources such as HCPs, family and friends, and scouring the
internet. They did not typically reach out to other families
affected by ASD and rarely did families know other Afri-
can American families with a child with ASD. Families
valued finding the best therapeutic care for their child by
being prepared and pushing harder as stated by K-6a,
‘‘Many parents come in and don’t care, but I come in with
my long list and a legal pad. We can have it front and back.
[I say] ‘what do you mean we can’t have that on there?’ ’’
Families considered searching the internet to be one of
their most important therapeutic actions. Families con-
ceptualized the search for ASD resources because their
child’s progress required it and most did not believe they
received the same resources as White families. K-5a ex-
plained, ‘‘The White community may have access to more
information than the Black community.’’
All of the families enrolled their child in ASD treatment
programs after the diagnosis by accessing a variety of
therapeutic options that included speech, occupational,
physical therapies, behavior therapy, in-home therapy,
classroom teaching, classroom routines or respite care.
Once their child was enrolled in elementary school, most
private therapies were discontinued excepting the nonver-
bal child. Families often developed therapeutic regimens in
the home by combining professional techniques with their
pragmatic understanding of their child’s abilities and
challenges. For most this resulted in innovative strategies
that blended professional with traditional family care. As
K-3a described, ‘‘….[his therapist] took the suggestions
that I had. Then she added, implemented hers on into mine,
and she came over with …different things to try for [my
child].’’ And K-2a reflected, ‘‘I don’t really go too much by
the blueprint as they say. I try to adapt the blueprint to what
I have.’’ Family frustrations were ongoing when their child
did not respond consistently, as K-4a summarized ‘‘He
doesn’t want it. I want him to want it but it doesn’t really
matter to him. And I don’t understand why I can’t get him
to want to do this?’’
Families took action for their child always in the context
of what was best for the entire family making difficult
choices. The balance was often tipped toward their child
with autism such as when K-2a said ‘‘…if I have to put
stuff on hold, to get her what she needs to get.’’ For over
half of the families, the choices involved therapy for their
child versus employment for the family member, such as
K-2a in dialogue with her mother: ‘‘I said ‘I can’t do this.’ I
said ‘I’m going to have to get a job Mom.’ She was like
‘what about the baby’s [therapy] schedule?’’’
HCP participants (outsiders) viewed African American
families of children with ASD ‘‘taking action’’ differently,
influencing families receiving and seeking health care for
their child. While some HCP participants did endorse the
potential for a professional bias toward the diagnosis of the
Caucasian child with ASD since this cultural group is most
often diagnosed, many also believed African American
families infrequently used professional diagnostic and ther-
apy services. Health care professionals also thought that it
was more difficult for African American families caring for
a child with ASD to access resources because they did not
have the same parent and family networks as Caucasians,
were ‘‘overwhelmed’’ by the physical and emotional care,
had limited economic resources, distrusted professionals and
had knowledge gaps in ASD symptoms and care.
Taking Action for the Community
Families believed taking action for their community was
necessary. Universally families were surprised that ASD
occurs as often in African American as Caucasian children.
They were not aware of delayed diagnostic and treatment
differences for African American children with ASD and
believed there were knowledge gaps about ASD within the
African American community:
K-4a The Black community does not believe that
autism happens in Black families. And that the only
problem with these children is a lack of being able to
deal with their behaviors. Black mothers do not want
to face that their child may have autism; they hide
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from it and do not want to accept why it happens and
what it is…
Families expressed there was a lack of acceptance of
disability in their communities combined with a lack of
knowledge of ASD, which they held kept families from
obtaining ASD diagnoses and securing treatments for their
child. Families considered the lack of acceptance was
founded on a stigma about disability present in the African
American community and passed down generationally as
K-8b explained, ‘‘It’s this stigma that’s associated with
[disability]. Retardation is the Black bubonic
plague…People are scared. They will never admit it….
And I think it’s just something that’s been passed down
generations’’. Families took action to address the lack of
acceptance and knowledge in their communities. They in-
creased ASD awareness by challenging others who stig-
matized ASD, and routinely educated family, friends and
community members particularly about the heterogeneity
of ASD. Families expressed how ‘‘giving back’’ was a
means to raise ASD awareness such as K-2a …‘‘besides if
you give you get blessed; and that’s because somebody
behind me is going to need help. I know what that feels like
to not know…’’
Family participants also took action for their community
in order to interrupt the ‘‘generational curse’’ of single
parenting, poverty and unemployment of which all can be
contributors to poorer health care access. Nearly all of the
family participants were raised by single mothers, had their
first child as an adolescent and grew up in an urban
neighborhood. Families believed in interrupting the cycle
in their community by ‘‘giving back.’’ For some this took
the form of giving their time or money to the neighborhood
poor. For others ‘‘giving back’’ encompassed more formal
efforts through church programs and centers for troubled
youth. For urban African American families caring for their
child with autism, taking action meant securing therapeu-
tics for their child always balancing choices for their family
and taking action to increase ASD knowledge in their
community, therefore contributing to accessing appropriate
health care for their child with autism.
Family Beliefs about Professional Health Care
All of the families believed that providing protection and
taking action for their child with autism could be enhanced
with further development of respectful and trusted rela-
tionships with HCPs. In this way families perceived their
child would receive the best health care and families would
be supported to seek the most appropriate health care for
their child. Families wanted to build personal relationships
with HCPs, which enhanced their trust of health care. One
family member characterized how trust grew when the
HCP shared ‘‘her personal story’’ after that K-6a felt, ‘‘we
had started to build like that personal relationship and she
got really attached to [my child]…’’
Families identified behaviors that signified HCPs will-
ingness and unwillingness to engage in a relationship.
Some willing behaviors included: helping families navigate
the health care system; providing emotional support; call-
ing families back/follow up calls; being knowledgeable
about their child’s history; not asking ‘‘20 questions’’;
seeking answers when HCPs were unsure; and, planning
for their child’s behavioral challenges in clinic. Families
felt when HCPs ‘‘judged them’’ for their child-raising
practices or questioned their ability to deliver therapeutics
at home; these were barriers to building a relationship.
Families narrated experiences that signaled respectful
and disrespectful ways of HCPs. Primary signs of respect
were listening and acting on family concerns for their
child, and recognizing that no one but family members
provided better care for their child. Other attributes in-
cluded: showing care and concern for their child above all
else; being flexible and integrating families’ suggestions
and child-raising practices into treatment plans; making
therapies adaptable for home use; not waiting in clinic/
therapies; respecting all generations of family members;
and, ‘‘going the extra mile’’. Signs of disrespect were: ru-
deness; impatience; being ‘‘in a rush’’; acting ‘‘like they
know everything’’; and, HCPs who did not acknowledge
their concerns or responded with ‘‘there is nothing wrong’’.
Discussion
In this study all of the urban African American families
provided protective care and took therapeutic actions for
the health and well-being of their child with autism. In
addition to these discoveries, factors of HCP diagnostic
bias, poor access to health care, child presentation and
family symptom interpretations were substantiated as cul-
tural influences in the diagnostic delays and subsequent
treatment of African American children with ASD. The
interrelationship of the thematic findings on family pro-
tective care and taking therapeutic actions on behalf of
their child, and the cultural factors proposed prior to this
study lead to an understanding why African American
children may experience delays not only in receiving an
ASD diagnosis and treatment but also why families may
postpone seeking health care for their child.
Family protective care is a major finding that resonates
with transcultural researchers of other African American
groups (Leininger and McFarland 2006; Morris 2012).
Researchers who studied parenting among African Amer-
ican families established that parents required a higher
level of responsibility from their typical child in their self-
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help abilities, and independence was viewed as a means to
cope with prejudice and negative stereotypes (McAdoo
2007; Peters 2007). This research is congruent with the
finding that family protective care meant pressing their
child’s independence in self-care, which could mean higher
functional skills for the African American child with ASD
therefore influencing families’ elucidation of their child’s
symptoms, initial HCP assessments and contribute to HCP
diagnostic bias toward the more frequent diagnosis of the
Caucasian child. Family protective care may also mean that
African American families identify and manage disability
in self-sufficient ways, often depending on family kinship
care so that ASD symptoms are ‘‘dealt with’’ directly and
timely professional care not sought (Barton et al. 2012;
Carr and Lord 2012; Rosenberg et al. 2011).
Families believed that caring for children with ASD
meant taking therapeutic actions on behalf of their child.
Family actions began with seeking a diagnosis for their
child and engaging in therapies, usually adapting strategies
for use in the home setting. Taking action for their child
was similarly described in research with African American
mothers raising children with ASD and developmental
disabilities (Jacobs et al. 2011; Solomon and Lawlor 2013).
Additional studies with African American and Caucasian
mothers of children with ASD examined the predictors and
longitudinal impact of having a child with ASD on ma-
ternal well-being and found African American mothers
demonstrated less perceived negative impact when com-
pared with Caucasian mothers (Bishop et al. 2007; Carr and
Lord 2012). It is possible that African American families
caring for a child with ASD who perceive less negative
impact on their well-being could influence the timing on
raising concerns about an ASD diagnosis and pursuing
actions on behalf of their child.
Families also took action in their community for the
benefit of their child with ASD. They perceived gaps in
their community’s knowledge of ASD and believed a
stigma of disability existed within it. Urban African
American families wanted to change their communities’
knowledge and perception of ASD by ‘‘giving back’’
through educating and increasing ASD awareness within
their own environment. The phenomenon of African
Americans ‘‘giving back’’ has been reported but is under-
studied (Jacobs et al. 2011; Lewis et al. 2007; McAdoo
2007). The stigmatization of disability in the African
American community has been studied among African
American parents of children with mental health disorders
(Bussing et al. 2003; Thurston and Phares 2008). In spite of
the stigmatization, these studies illustrated fewer barriers to
care and more positive attitudes of African American
parents toward finding services for their children suggest-
ing that families will persevere and secure services in order
to provide mental health care for their child. It is possible
that African American families who suspect their child
could have a disability may feel stigmatized and delay
action toward professional care. It is also conceivable that
for the families in this study, the stigma of disability may
have been a motivating factor leading to the provision of an
earlier diagnosis and ASD treatment.
Health care accessibility has been traditionally defined
as issues of cost, proximity and transportation, however
these issues were mostly absent from the themes in this
study. Instead families expressed a distrust of equity in
health care that was upheld as an important barrier to care
and characterized as potential or actual distrust of clinical
care. Health care distrust among African Americans has
been identified in the literature with reasons cast such as
previous discriminatory experiences, historic inequalities
in health care and generational cultural knowledge (Bran-
don et al. 2005; Burkett and Morris 2014; Gallagher 2014;
Grinker et al. 2011; Kennedy et al. 2007; Thomas et al.
2011). Differences in health care accessibility for African
American families of children with developmental disor-
ders (DD) have been reportedly underpinned by families’
experiences with discriminatory actions (Gourdine et al.
2011; Jacobs et al. 2011; Solomon and Lawlor 2013).
Despite these unsettling findings from the present study and
others, family participants believed most HCPs provided
equitable and quality health care to their child with ASD
and deemed HCPs capable of helping them navigate the
health care system. Other disability researchers have con-
curred that HCPs are often viewed as potential or proven
trustworthy supports for African American families of
children with DD (Jacobs et al. 2011; Solomon and Lawlor
2013).
As a qualitative study of African American families
caring for children with autism there are limitations in the
transferability of the findings. The purposeful selection of
participants included families who were actively engaged
in developmental health care, obtained their child’s diag-
nosis of autism before 4 years old and lived in an urban
Midwestern city. Families not possessing these character-
istics may have different experiences. Family structures
were represented by both single and two parent urban
African American families; and for all but one mother, this
was not their first child. Additionally, all parent par-
ticipants were over 21 years old at the time of the birth of
their child with autism and all had completed high school,
therefore transferability of the results could differ for
younger first-time less-educated parents of children with
autism.
Implications for Practice and Further Research
It is essential that HCPs build their knowledge of the cul-
tural beliefs and values of families and children needing
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ASD care. When HCPs have knowledge of the cultural
influences on care, it fosters culturally congruent actions
that not only positively affect the child’s health but also
health care access thus placing less risk on the developing
child with ASD (Betancourt et al. 2003; Tyson 2007).
HCPs build this knowledge of cultural care through re-
flection into their own heritage, cultural experiences and
beliefs with HCP decisions and actions that can assist
families and children to preserve, accommodate or repat-
tern their health care goals in a culturally congruent way
(McFarland and Wehbe-Alamah 2015). Health care pro-
fessionals can preserve or maintain urban African Amer-
ican family cultural care of children with ASD through
affirming the beneficial effects of protective care and
families’ taking therapeutic actions for their children,
building provider-patient relationships that include multi-
ple generations, respectful listening and taking action on
family concerns, and presenting all of the therapeutic op-
tions available to their child.
Families benefit when HCPs negotiate with families to
navigate and make informed choices in ASD interventions
and balance traditional child-raising practices with pro-
fessional strategies tailored to the challenges of a child with
ASD. Health care professionals can facilitate restructuring
or repatterning family cultural care through creation of
networking opportunities and social supports for single and
two-parent families, and by increasing family and com-
munity knowledge of ASD with community initiatives.
HCPs can ensure the provision of culturally congruent care
for urban African American families caring for their child
with autism when families are core to the decisions and
actions needed to maintain, accommodate and restructure
family care.
The findings of this study demonstrated there are
multiple cultural elements that influence the existing
health care disparities among African American children
with ASD. Yet it remains that the delays to diagnosis and
treatment for African American children with ASD are
preventable. Earlier identification and referral of children
with ASD symptoms into appropriate interventions show
positive benefits and can affect long term outcome
(Dawson et al. 2010; Manning-Courtney et al. 2013;
Rogers and Vismara 2008; Schonfeld and Manning-
Courtney, 2007; Wiggins et al. 2012). However, the most
recent ASD prevalence ratios reported among Caucasian
and African American children were essentially un-
changed from previous surveillance years, indicating little
progress in earlier diagnosis for African American chil-
dren with ASD (Baio et al. 2014). Studies that investigate
culturally congruent interventions leading to earlier
identification and treatments are needed to mitigate the
inequities in health care of the African American child
with ASD.
Acknowledgments We would like to thank all of the families who
participated in this study for their meaningful contributions and un-
wavering support of this research. This study was supported by the
Carolyn Stoll Research Fund, Center for Professional Excellence,
Cincinnati Children’s Hospital Medical Center; the University of
Cincinnati Research Council Summer Graduate Fellowship; and the
Transcultural Nursing Society Research Award.
Conflict of interest The authors declare that they have no conflict
of interest.
Ethical Standards This study was approved by the Cincinnati
Children’s Hospital Medical Center Institutional Review Board and
has been performed in accordance with ethical standards laid down in
the 1964 Declaration of Helsinki and its later amendments.
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