Download Autism in the African American Community.

Autism in the African American Community.
An in-depth look at the lack of African American participation in Autism Research.
Brittany Randolph
Advanced Scientific Communication 5293
4/25/2012
Page |2
Introduction
“Just as disparities exist in medical care and diagnosis for minority children with Autism,
current research in Autism is not adequately representative of the African American segment of
the US population.” (Hilton et.al 2009) There have been a number of studies within the last 10
years that have tried to shed light on the reasoning behind this lack of representation. Lack of
knowledge about the disorder, lack of confidence, misdiagnosis/delay in diagnosis and limited
resources found within the community are the key factors in why the African American
community is not being represented adequately not only in studies regarding Autism, but medical
research in general. There are also a number of related factors that heavily influence the African
American community’s reasoning for not seeking appropriate services for children who are
possibly affected by Autism Spectrum Disorder (ASD). These factors include negative thoughts
and feelings such as shame and denial, stigmas that coincide with having children with
disabilities, and feelings of guilt and responsibility for the child’s disability. In order to increase
the representation of this population in Autism related research, there are number of ideas that
need to be taken into consideration to help make the parents of these children feel educated,
knowledgeable, and beneficial to their child’s diagnosis and treatment. The purpose of this paper
is to discuss how the lack of resources and misunderstandings of characteristics of Autism
Spectrum Disorder affect the recognition and diagnosis of Autism in the African American
Community. By defining the disorder, addressing the parental concerns and understanding of the
disorder, and providing insight on lack of resources within communities, comprehension of why
there is a lack of representation will be provided as well as a number of solutions and
recommendations to aid in the restoration of African American representation in medical and
Autism related research.
Page |3
Defining the Disorder: What is ASD?
In general, “Autism Spectrum Disorders (ASD) are neurodevelopmental disorders that
are characterized by difficulties in verbal and nonverbal communication, social reciprocity, and
restrictive and repetitive behaviors. ASD includes autism disorder, Asperger’s syndrome, and
persuasive developmental disorder.” (Montes and Halterman 2011) The nomenclature of the
disorder has changed tremendously within the last few decades. The term “ASD” has included a
number of different disorders and indicators that could range between mild symptoms to
extremely severe symptoms. With the evolution of nomenclature, it is very understandable why
African American parents that have children who are considered autistic can be confused and not
truly understanding of what characteristics and behaviors are considered signs and symptoms of
Autism Spectrum Disorder.
Along with understanding the definition of the disorder and all that it entails, some
African American parents believe there are a number of myths, stigmas, advantages and
disadvantages to having children who are disabled. Many parents are in denial, believing that
their children are “just a little slower than others who are their age” and that their child will
“grow out of” the behaviors that the child is demonstrating that are not developmentally
appropriate. The parents are not realizing that by not admitting that there is something wrong and
not seeking the necessary help immediately, postpones the child’s chances of receiving the
necessary services provided during early childhood development. It is not uncommon for parents
in the African American community to seek advice and suggestions on how they should respond
to the problem from extended family members and friends. By doing so, the parents are usually
seeking comfort about an issue that they already know exists. By speaking to family members,
the parents are hoping to hear that they are just “over exaggerating” and that there is nothing
Page |4
“wrong” or noticeably different about the development of their child. Seeking advice from those
who are uneducated about this topic can prolong the problem and ultimately postpone the child
receiving the necessary services for help. An advantage of having a child who is diagnosed as
Autistic includes the likelihood to receive help that is provided for those who are diagnosed in a
timely fashion as well as windows of opportunity for future help in favor of family members who
have disabilities and other medical needs. Disadvantages of the disorder include the stigmas and
myths that are associated with having children who are disabled: wondering how the child “got
the disorder”, needing expensive treatments, and worrying about the perception of their children
at school and in the community because of their special need. Luckily, due to the increased
understanding of ASD and the terminology associated with the term, many of the myths and
stigmas associated with the origin of the disorder are being dispelled as more research has
developed. (Leonard et.al 2010). More families are seeking help and are ignoring the negative
misconceptions associated with seeking medical attention for their children when they are
noticing behaviors that are typically uncommon. Although these myths and stigmas are being
shattered, the African American community still has a long way to go when it comes to being
more accepting and considerate of the disorder within the population.
Parental Understanding of ASD
One of the key factors in the lack of African American representation in the medical
research related to Autism is simple; parents do not understand how to describe the symptoms
that their children are exhibiting to the primary care providers. It is imperative that parents
understand how to explain and interpret their children’s symptoms in order to prevent a delayed
Page |5
and misdiagnosis. Although there are differences in patterns of diagnosis of Autism for African
American families, for the most part, there is no evidence to show that it is based solely on health
care officials. Parent response to the child’s symptoms is one of the key factors for the delay in
diagnosis. If the parents are not sure of what signs to look for in their child’s behavior and are
not exactly sure of what questions they should ask the primary care provider, then the delay of
diagnosis will continue because these parents are misinformed on how to get the best help for
their children. Researchers in one study found that African American parents are describing
their children’s symptoms as hyperactivity, impulsivity, and inattention. There was also a
correlation between the child’s teacher’s descriptions of the child’s behavior in the classroom as
well. (Sell et.al 2012) African American parents tend to describe their children’s symptoms as
being solely behavioral related. This usually leads to the child being misdiagnosed with some
type of behavioral disorder instead of the correct ASD diagnosis. The child’s behavioral problem
can be viewed by parents as simply having a child who “just doesn’t listen” or “has a hard time
with following directions.” According to Mandell, Ittenbach, Levy and Pinot-Martin in 2007,
“The fact that African-American children with autism were more likely than children of other
ethnicities to receive a diagnosis of conduct disorder suggests the possibility that AfricanAmerican parents are more likely than others to describe their children’s symptoms in ways that
emphasize their children’s disruptive behavior.” Correspondingly, Sell et.al 2012, insists that
“Children with odd responses to sensory stimuli may have behaviors that appear atypical or that
are problematic and may lead to an earlier evaluation for an ASD.” Parents who are describing
their child’s symptoms as being behavioral related usually don’t typically see these behavioral
symptoms as “atypical behavior.” They believe that their child is simply misbehaving and that it
comes along with young age (terrible two’s) and expressing themselves. With African American
Page |6
parents describing their children’s symptoms as being disruptive and behavioral it is apparent as
to why the children are receiving diagnoses which consist primarily of disorders which focus on
behavioral problems.
Parental understanding of the disorder is just a fraction of a much larger equation. The
clinician’s response to the parent’s descriptions of their children’s symptoms plays a large role in
the delay and misdiagnosis of these children as well. The correct interpretation of the child’s
symptoms by the families and clinicians are frequently reported factors in the lack of ASD
diagnosis in the African American community. (Mandell, et.al 2009) Because of the large
number of symptoms and characteristics associated with ASD, it can be difficult to diagnose
children with confidence due to the overlapping of many symptoms with other disorders. It is
important that clinicians find a steady and accurate tool to test children whose diagnosis is not
“crystal clear”. According to Sell et.all 2012, “While clinicians’ records describe core symptoms
(social, communication and other), they do not always specify the experience of the clinician or
if they are only using a standardized tool to determine the presence of core symptoms and it is
possible that social impairments may be exaggerated or underappreciated.” It is important that
clinicians are educated about the disorder as well; if the primary care providers are educated on
the disorder and how it “looks” in the African American community, then the chances of them
recognizing these symptoms and communicating more effectively with the parents would result
in more accurate and timely diagnosis’ of ASD in African American children. Distinctive testing
for children who show symptoms of having autism typically includes behavioral assessments,
physical assessments, and laboratory exams. These tests are suppose to help with the diagnosis of
the disorder because they help the physician determine any developmental delay, physical
impairments that could affect the child’s development (such as hearing) and testing for any type
Page |7
of unusual behavior not associated with the child’s age. It is important that both the parent’s and
the clinicians know and understand this information. According to Montes and Halterman 2010,
“…parents of Black children with ASD had 5 times greater odds of stating that doctors did not
spend enough time with their child, >3 times greater odds of reporting that doctors were only
occasionally sensitive to their values and customs, >2 times greater odds of reporting that doctors
helped them feel like a partner in care sometimes or never, and that they [the parents] were
listened to carefully only sometimes or never.” Having insight on the lack of respect felt by the
parents and the difference in the appearance of symptoms in African American children can
increase the likelihood of the child being diagnosed and treated properly in a timely manner.
Overall, the understanding of the disorder plays is major component in the ability to receive the
correct treatment. Ensuring that parents know what to look for as symptoms, understand how to
communicate those symptoms to the clinicians and making sure that the primary care providers
are educated about ASD and the symptoms described in the African American community will
heavily minimize the number of misdiagnosed children.
To coincide with parental understanding, negative feelings associated with ASD are
important when it comes to providing the necessary care for children and their families. Parents
of children with ASD want to feel comfortable enough with themselves and their knowledge
about the disorder when discussing symptoms and treatment with professionals who have the
potential to help them. Based on the “Perceived negative feelings towards children and/or parents
by the school” section of a research study conducted by Zionts et. al (2003), the parents felt that
the faculty and staff blamed the parents for the condition of their children. It is important that the
parents do not feel blamed for the child’s disability because it will in fact cause the parent to
retreat and become defensive, reducing the chances of the child receiving the help that they need.
Page |8
Research pertaining to parental influence on the development of ASD in children is minimal;
there is nothing showing that a parent’s specific behaviors (for example, lack of prenatal care,
drug/alcohol abuse) during/prior to pregnancy or lack thereof put a child in higher risk of
developing an Autism spectrum disorder. It is important that placing blame does not occur by
anybody so the child can get the resources they need to ensure an easier and higher functioning
life for themselves and their families. Another sense of negativity stems from the lack of respect
felt from African American‘s by medical researchers. According to Hilton et.al (2009), “…the
motivation to participate in biomedical research is also associated with the extent to which a
given condition [ASD] is perceived as having a negative impact.” Parents tend to immediately
feel that they are the reason the child has a disability, evaluating all that they may have done
wrong to try and find some type of explanation of what could have happened. Because of these
feelings, parents believe researchers feel the same way; placing blame for the child’s disability
on the parents and looking for a way to embarrass them. If the parent’s feel inferior and believe
that the medical researchers are out to make a mockery of them, then they are less likely to want
to participate in the research. Overall, the negative feelings associated with ASD by African
American parents are stemmed from respect and lack thereof. Parents, teachers, and medical staff
should work to ensure that everyone is respected and everybody’s goals are to get the best help
for the children involved. Zionts et.al (2003) says that “The relationship between cultural
differences and satisfaction with the special education system seemed to these parents to be
inextricably tied to issues of respect and levels of comfort…between parents, teachers and
children/youth that have moderate to severe disabilities.” If these factors can be taken into
consideration, then the likelihood of the parents participating in future medical research will
increase drastically.
Page |9
Misdiagnosis/Late Diagnosis
As mentioned before, the misdiagnosis of the disorder stems from the misunderstanding
of the child’s symptoms by the parents and their ability to communicate effectively with their
primary care providers. The similarity of the characteristics of Autism and other disorders
combined with the parents misunderstanding of symptoms usually lead to the misdiagnosis of the
disorder. For younger children who are displaying symptoms of delayed speech, behavioral
struggles and poor social interactions, the misdiagnosis of language impairment on Attention
Deficit/Hyperactivity Disorder are usually given. Older children are typically misdiagnosed as
having obsessive-compulsive disorder and oppositional defiant disorder. (Mandel et.al 2007) In
the same study by Mandell et. al (2007), Mandell stated that “ …African American children are
2.6 times less likely to receive an autism diagnosis on their first specialty care visit, instead often
diagnosed with conduct disorder or adjustment disorder.” Numerous studies have shown that
African American children not only receive less health care but also encounter lower qualities of
family-centered care. This is imperative because sufficient family-centered care contributes to
the treatment and success of families affected by ASD. (Montes and Halterman. 2011)
Misdiagnosis of children with ASD is frequent and understandable because of the numerous
overlapping signs and symptoms. The majority of African American students are diagnosed as
having some type of behavioral disorder due to the description of their symptoms and inability to
communicate as effectively as children who are similar in age. This misdiagnosis is usually
referred to as Diagnostic Substitution. Diagnostic Substitution occurs when a child is diagnosed
with a disorder prior to being diagnosed with ASD. Usually with Diagnostic Substitution, the
child is diagnosed with the correct diagnosis of ASD after further testing has occurred.
P a g e | 10
Along with misdiagnosis and Diagnostic Substitution, delay in diagnosis is essential
when it comes to the children and their families receiving the help that they need with ASD.
According to Mandel et.al (2009), “Delay in ASD diagnosis may be because of inadequate
screening practices, slow response to paternal concerns, or a lack of awareness of symptoms that
manifest early in life.” Likewise, in a study done by Jonsdottir et.al (2011), the author stated that
“Early identification and diagnosis are critical for several reasons, one of which is to make
children eligible for suitable intervention services at a young age, which in turn may affect their
future outcome.” The earlier those children are exposed to services to help with their symptoms,
the better the chances of them getting the assistance they need. Jonsdottir et.al (2011) also stated
that, “Children diagnosed after the start elementary school have thus missed the opportunity of
benefiting from appropriate intervention during their early years. Evidence-based early
intervention may not only result in gains in functioning and improve quality of life for the child
and the family, but also in long-term cost savings for parents and service systems.” It is
important that parents and primary care providers work diligently to ensure that the children
receive the earliest and most accurate diagnosis possible. Although there are a number of
variables that have been taken into consideration when it comes to childhood diagnosis (parental
understanding, clinician experience, misdiagnosis and diagnostic substitution), the education of
the parents has also proven to play a role in the early diagnosis of the children who are affected
by ASD. It is believed that the higher the level of education of the child’s parent or guardian, the
more likely the child will receive a proper and timely diagnosis. (Mandell et. al. 2009) Parents
of children affected by ASD who are diagnosed later than recommended tend to struggle and are
less enthusiastic about current services when weighing the benefits that could have been
provided from early childhood intervention services. Ruble and McGraw (2007) stated
P a g e | 11
that“…parents of older children may become less satisfied over time, reflecting a sense of
burnout and loss of optimism concerning the degree of progress and future prognosis of their
children.” Due to an increasing number students having an appropriate diagnosis due to lack of
education of parents, the community in collaboration with experts in the field should work
together to educate these families to ensure that the families recognizes the key characteristics
and work to provide proper care for the students.
Lack of Resources and Possible Solutions
Lack of resources and understanding of ASD can contribute to the misrepresentation of
African Americans affected by Autism. For many families, the idea of their loved one needing
disability support can be devastating and depressing. Coming to terms with this disorder can
especially difficult when the availability of resources and income are minimal. In a study
conducted by Zionts et. al (2003) “Parents at lower levels of income reported their income as a
barrier to accessing services in their communities.” Families affected by ASD are burdened with
significant health care costs and children with ASD have more outpatient visits, physician visits
and medications in comparison to children in general. (Ruble and McGraw 2007) The costs of
medications, doctors’ visits and other allied services that collaborate with treatment of ASD can
be expensive and intimidating not only to the African American community, but to anybody in
general. There is a lack of resources about ASD found in all communities; but due to the lack of
resources and knowledge about the disorder in the African American community, these families
are less likely to seek out possible resources and treatment. Alegria, Vallas and Pumalega (2010)
found that “High rates of isolation and socioeconomic disadvantage of minority children can
P a g e | 12
have significant adverse effects on children’s mental health, including depression and a range of
other adjustment difficulties.” There is also a large deficit of resources for older children who are
diagnosed with ASD. The study from Alegria, Vallas and Pumarlega (2010) also showed that
there were a significantly smaller number of resources for older children affected by ASD but
there was high number of resources for children categorized with behavioral disorders. This is
interesting especially since most African American children who are diagnosed later than
recommended are usually diagnosed as having some type of behavioral issue.
Due to the amount of research conducted about the African American community and
their participation in research studies about ASD, there are a number of possible solutions that
could help improve that participation of African Americans in research and improve the quality
of care provided by the physicians and resources centers within the community. Alegria, Vallas
and Pumarlega believed that “Developing appropriate health and mental health treatment
services for ethnic minorities requires comprehensive and ongoing collaborative efforts that
address issues of no engagement in mental health treatments such as cultural difference in the
perception of illness and its causes, help-seeking behavior and attitude toward health care
providers, and in how ethnic and racial minority families prioritize respond to and adhere to
mental health treatments.” It is important that researchers and community resources personnel
take a number of these factors into consideration when targeting the African American
community. Findings in a study by Ruble and McGraw (2007) argued that there was “a need for
providers to better understand the needs of older individuals and their parents or caregivers in an
effort to provide more effective or meaningful services.” Mandell et. al (2009) stated that “The
statistical discrimination model indicate a critical need to train health care and education
professionals, especially those working in underserved communities, about the prevalence and
P a g e | 13
presentation of ASD and its frequent co-occurrence with severe cognitive disability.” Working
more closely with everyone involved (parents, primary care providers and researchers) will
ensure that everyone has a clear understanding of ASD and are more prepared to provide
services when needed. Most research conducted compares the racial disparities of African
American and other ethnicities. More research should be conducted solely on the African
American communities’ lack of understanding. Working to make sure that these communities
feel connected and understand ASD and the benefits from early diagnosis will help with the
understanding of the disorder within the communities.
Conclusion
There are a number of factors that contribute to the misrepresentation of African
Americans in research related specifically to autism. Researchers have discovered that African
American children are less likely to be diagnosed with autism at their primary care visit. Other
factors include misdiagnosis of conduct or behavioral disorders and negative preconceptions
perceived from the child’s family. Educating the parents about how to identify the signs and
symptoms of the disorder will decrease the number of misdiagnosed/late diagnosed children at
an early age. It is also important that health professionals take the parents needs into
consideration when working with these children as well. Providing accurate and reliable testing
procedures for determining the disorder can help with identifying the signs and symptoms of
ASD in the African American community. Working to ensure that these measures are taken into
consideration will reduce the number of children who are missing the opportunity to receive
early childhood intervention services due to the delay in accurate diagnosis of the disorder.
Providing resources in all communities will help with the development of understanding about
the disorder and how to receive effective treatment as well. Reaching out to these families, by
P a g e | 14
providing books and support information on ASD, and showing them that there are services
available to help their child get the best care possible, will help with the parents’ levels of trust
and willingness to cooperate with medical personnel for future studies and experiments by
research staff. Admitting that there are unique needs for the African American community and
the diagnosis of ASD is a great start to changing the lack of representation of this community in
research. Becoming aware of these needs and differences will help the medical community reach
out to the community and relate in a way that has not been successful in the previous studies.
P a g e | 15
References
Alegria M, Vallas M, Pumariega AJ. 2010. Racial and ethnic disparities in pediatric mental
health. Child Adolesc Psychiatr Clin N Am 19(4):759-74.
Hilton CL, Fitzgerald RT, Jackson KM, Maxim RA, Bosworth CC, Shattuck PT, Geschwind
DH, Constantino JN. 2010. Brief report: Under-representation of african americans in
autism genetic research: A rationale for inclusion of subjects representing diverse family
structures. Journal of Autism & Developmental Disorders 40(5):633-9.
Jónsdóttir SL, Saemundsen E, Antonsdóttir IS, Sigurdardóttir S, Ólason D. 2011. Children
diagnosed with autism spectrum disorder before or after the age of 6 years. Research in
Autism Spectrum Disorders 5(1):175-84.
Leonard H, Dixon G, Whitehouse AJO, Bourke J, Aiberti K, Nassar N, Bower C, Glasson EJ.
2010. Unpacking the complex nature of the autism epidemic. Research in Autism
Spectrum Disorders 4(4):548-54.
Mandell D, Ittenbach R, Levy S, Pinto-Martin J. 2007. Disparities in diagnoses received prior to
a diagnosis of autism spectrum disorder. Journal of Autism & Developmental Disorders
37(9):1795-802.
Mandell DS, Wiggins LD, Yeargin-Allsopp M, Carpenter LA, Daniels J, Thomas KC,
DiGuiseppi C, Durkin MS, Giarelli E, Pinto-Martin J, et al. 2009. Racial/Ethnic disparities
in the identification of children with autism spectrum disorders. Am J Public Health
99(3):493-8.
Montes G, and Halterman J. 2011. White-black disparities in family-centered care among
children with autism in the united states: evidence from the ns-cshcn 2005-2006.
Academci Pediatrics. 11(4): 297-304
Ruble LA and McGrew JH. 2007. Community services outcomes for families and children with
autism spectrum disorders. Research in Autism Spectrum Disorders 1(4):360-72.
Sell NK, Giarelli E, Blum N, Hanlon AL, Levy SE. 2012. A comparison of autism spectrum
disorder DSM-IV criteria and associated features among african american and white
children in philadelphia county. Disability and Health Journal 5(1):9-17.
Zionts LT, Zionts P, Harrison S, Bellinger O. 2003. Urban african american families' perceptions
of cultural sensitivity within the special education system. Focus on Autism & Other
Developmental Disabilities 18(1):41