Cultural Stereotypes and Autism Disorder
“It’s the fastest growing developmental disability, autism” (Murray, 2008, p.2). “It is a complex neurological disorder that impedes or prevents effective verbal communication, effective social interaction, and appropriate behavior” (Ennis-Cole, Durodoye, & Harris, 2013). “Autism spectrum disorder (ASD) is a lifelong disorder that may have comorbid conditions like attention deficit disorder (ADD)/attention deficit/hyperactivity disorder (ADHD), anxiety disorder, stereotypical and self-stimulatory behaviors, insomnia, intellectual disabilities, obsessive compulsive disorder, seizure disorder/epilepsy, Tourette syndrome, Tic disorders, gastrointestinal problems, and other conditions. Another certainty, there is no cure at this time” (Ennis-Cole, Durodoye, & Harris, 2013). According to the Center for Disease Control and Prevention statistics, 1 in 59 children have been identified with ASD, and is reported to occur in all racial, ethnic, and socioeconomic groups. Families in different cultures all over the world are faced with the challenges of this disorder.
The perceptions of these beliefs vary upon each individual culture, about how it was caused and how it should be treated. “The symptoms of ASD manifest similarly in children across different cultures, but the meaning attributed to symptoms, help-seeking behavior, the degree that researchers and clinicians in different cultures follow the international diagnostic criteria, and available treatment options may vary greatly” (Kang-Yi, Grinker, & Mandell, 2013). According to research, there are many similarities and differences between cultures and how they diagnose, treat, and understand ASD. For example: In the Korean culture, the diagnosis of autism is not only uncommon, but only given to those who have a more significant impairment that is recognizable. “It is also challenging to obtain the applicable resources due to the lack of a formal support system for children with disabilities that could consequence in Korean parents becoming discouraged and children not receiving appropriate access to treatment and other services” (Kang-Yi, Grinker, & Mandell, 2013). In the Indian culture, “Parents expectations for their children with a disability are often negative and unrealistic, and cultural beliefs about causes and course/ duration play a key role in parents’ perceptions of their children’s disabilities” (Ravindran & Myers, 2012). The individuals and families confronted with autism believe the cause of it is from a past life sin and is connected to all aspects of “karma”. For the African American culture, studies state that there has not been enough research to implicate the beliefs, cultural practices, and practices of families targeting autism. However, there has been cultural factors such as health care access which gives African American families a delayed diagnosis for their children with ASD. Both families and professionals believed this delayed diagnosis affects seeking and receiving the correct treatments.
Autism and the research around it have been prevalent in many cultures, particularly in the Korean culture, Indian culture, and African American culture. Although all three of these cultures are similar, their cultures are influenced by the family’s cultural background which gives them differences within beliefs and treatments. This paper will highlight the similarities and differences amongst these three cultures and the in cultural beliefs, treatments, and diagnosis of the autism spectrum disorder.
ASD in Korean culture has a much larger stigma than other cultures. It became so undiagnosed and ignored from the culture ignoring the unusual tendencies of their child. Families have normalized concealing and avoiding any sort of help when it comes to this diagnosis. Stigma is relevant to the after effect of the diagnosis. For example: families have shared that the diagnosis results in divorces, strained marriages, ad social and family norms. The parents of these children have found it easier to disassociate themselves to avoid being judged. In comparison to the diagnosis of autism, in South Korea, “children that American clinicians might diagnose with autism tend to be diagnosed with reactive attachment disorder (RAD), pejoratively referred to as “lack of love” (Kang-Yi, Grinker, & Mandell, 2013). In Korea, RAD is often perceived to be a condition resembling autism, caused by a mother’s absence of attachment to her child. Thus, as Grinker notes, while RAD may stigmatize the mother, autism would stigmatize the whole family—past, present, and future and negatively in?uence. In addition to this, while mothers disengage themselves with others, this takes effect on the child and their lack of skills. It was reported that mothers who do not model join in play with peers, their lack in social skills, and insensitive to their child’s cues, the child is more likely to engage in behaviors. The more that the mother is engaged with play therapy and child-mother psychotherapy were effective in improving children’s language and socioemotional areas. The behaviors decreased the more involved the mother is to these activities. Stigma is Korea is one of the biggest setbacks to a child on the autism spectrum to being diagnosed.
Treatment for children with ASD is not the easiest, the most accessible, and the easiest to afford. Both behavioral and developmental therapy have no research on the effectiveness on children with ASD due to the lack of interest in the culture. The therapies that exist are described in the Korean literature were music therapy, massage therapy, play therapy, psychotherapy, and attachment promotion. This leaves no room for intensive 1:1 therapy that American children on the spectrum do receive and research has shown to be most effective. For this reason, there is a “lack of a formal support system for children with disabilities that could result in Korean parents becoming frustrated and children not receiving appropriate access to treatment and other services” (Kang-Yi, Grinker, & Mandell, 2013). This frustration relates to costs and funds that are not available for families having to immigrate to countries offering better resources. The Korean culture continues to underdiagnosis children with ASD due to lack of both funds and resources.
In the Indian culture, a child is known to be a “gift from God”. In contrast, children with disabilities are not nearly as accepted as those who do not have a disability. These children with disabilities are naturally loved and cared for regarding basic needs, but parents often do not know the importance of early stimulation and early intervention. Parents create unrealistic expectations for their children on the spectrum and “expect a life of sacrifice and adjustment for themselves rather than focus on rehabilitation for the child” (Ravindran & Myers, 2012). In the same study by Ravindran and Myers, families were asked what types of treatments that their child was receiving and what they were expecting the result to be. Some parents answered fairly typical while others gave answers such as “to become normal” or to be in “complete recovery”. These families put this false hope on their children diagnosed with ASD with a mindset going into treatments like this. Other parents gave a more rational answer, such as “Improvement in language and communication” or “Improved socialization”…which are reachable goals if the child is receiving the correct therapy.
Within the article by Ravindran and Myers, a study was done to demonstrate the ideas of parents within the Indian culture compared to parents living in the Western world. In this measure, the parents that participated in this study help the interviewees to also understand how two cultures determined their experience of parenting a child with a disability. Parents in the study drew their cultural influences to fluctuating points from their Indian roots and the Western culture. One parent of a child with autism whom moved to the US from India 7 years prior, expressed that he agreed with the Western beliefs and treatments for his son. His child received language therapy through the Western world, and he did not use any treatment from India. He disagreed with the “traditional Indian belief of destiny/fate as possible causes of his son’s autism” (Ravindran and Myers, 2012). Another parent who left India 10 months moved to the US to give her daughter on the spectrum the opportunity to study and practice therapies not available in India. She used a combination of Western therapies, including RDI, speech, social group, OT, as well as homeopathy. Like the previous parent, she “strongly agreed with the traditional Indian beliefs in Karma, destiny/fate, and parental mistakes in present or past life as a possible cause for her child’s autism, while also endorsing some Western beliefs in environmental toxins and immunizations” (Ravindran and Myers, 2012). Above all, participants of the study appear to be “scientifically minded”. Most affirmed a “combination of genetics, environmental toxins, and biological factors as possible causes of autism” (Ravindran and Myers, 2012). With this being an important part of the study, it is also important to understand the distinctive cultural practices and methods of treatment and being open to the awareness of the family’s need because they are important aspects of clinical care.
The African American culture does not only not have enough research to implicate the beliefs and cultural practices targeting autism, but they also partake in a delayed diagnosis for several reasons. Among African Americans, “children represent 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” (Burkett, Morris, Manning-Courtney, Anthony, & Shambley-Ebron, 2015). This exhibits a huge barrier for families to receive healthcare which then delays services and treatment for the child with ASD. Cultural factors have played a large role in health care. The study by Burkett proposes the idea that there are two factors that contribute to this delay: institutional or socioeconomic factors. Institutional factors are explained to be involving missed health care visits, public services for ASD both locally and regionally, and the absence of family centered care are all involved in the early diagnosis of ASD in these children. In this study it is found that the “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” (Burkett et al., 2015). Not only do these issues prevent treatment for their children, they continue to put a delayed diagnosis on the child. For socioeconomic factors, the article continues to explain that studies relating to this have to do with low income families. When the socioeconomic status is controlled in this manner, African American children are not as likely to have the appropriate access necessary to gain healthcare. To conclude this proposal, it is important to understand the influence of culture upon African American families faced with the challenges of ASD.
Another obstacle that African American families face receiving an early diagnosis and correct treatment for their child with ASD has to do with the stigma and acceptance in the communities that they pertain to. In addition to this, the knowledge of ASD throughout the community is very low. A participant in this study expressed: “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’’ (Burkett et al., 2015). Regarding this statement, participants also expressed their need for concern and acted to spread awareness, although stigma continues to be a hurdle.
This study by Burkett showed that there are numerous cultural elements that persuade the current health care distinctions involving African American children with ASD. The current study state that the delays of diagnosis and treatment are “preventable” and “earlier identification and referral of children with ASD symptoms into appropriate interventions show positive benefits and can affect long term outcome” (2015). More studies that investigate culture are crucial to influence exploring more interventions for an early diagnosis for specifically this culture.
From a multi-cultural standpoint, there is a comparison including all three of these cultures. For the Korean culture, both stigma and lack of support interfere with children on the autism spectrum to receive a diagnosis and correct treatment. For the Indian culture, along with stigma in this culture, there is not an abundance of knowledge of the importance of early intervention as well as unrealistic expectations. Lastly, for the African American culture: stigma and cultural factors were discussed pertaining to the barrier of early diagnosis and treatment. All three of these cultures are similar in the way that they have stigma in common. Comparatively, each culture has their own barriers to withholding an early diagnosis and correct treatments for children on the autism spectrum. While each culture is very similar and different in their own way, they also have one theory in common. It is important for professionals to consider cultural practices and be more deliberate in their efforts to ask culturally relevant questions (Ravindran & Myers 2012). It is established that all parents despite the culture want the best for their children and are working to enlist in whatever they think will help. It is merely important to have a variety of interventions that sensitize towards families