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Autism and Minorities: Racial Disparities and What is Being Done About It

Posted by National Autism Network , in Autism Awareness, Autism Treatments 05 July 2013 · 635 views

autism autism and minorities
Autism and Minorities: Racial Disparities and What is Being Done About It It is widely known that racial disparities occur in our country’s healthcare system, so perhaps it is no surprise that research concerning autism and minorities has yielded some disheartening results.1 The subject has gained exposure quite recently and was even a major topic of discussion during the 2012 Congressional Hearing on Autism that occurred in November. Research has demonstrated that minority children in the United States are not only more likely to be diagnosed at a later age or receive less special care for treatment of co-occurring conditions than their Caucasian counterparts, but are also less likely to be involved within the research community itself.2 In 2010, the Interactive Autism Network and the Autism Genetic Resource Exchange each reported that African-Americans account for less than five percent of their respective databases.3 One study indicates that “white kids may be diagnosed with autism as much as a year and a half earlier than black and other minority children.”4 Additionally, a June 2013 study that examined the treatment of co-occurring conditions with autism “found significant racial and ethnic differences in use of sub-specialty visits and procedures.”5 These results are especially alarming considering the universal belief that receiving intervention as early as possible is critical for autism treatment.  This article will explore some of the theories as to why minority children with autism are experiencing inequality with diagnostic and treatment services and will also discuss what steps are being taken to close the racial gap between autism services.

Why is This Happening?  
Sadly, the racial differences in use of care are not isolated to autism but exist for many pediatric conditions.6 Determining what factors are causing this disparity has become a challenge for the research community. Theories range from actual biological ethnic different in the rates of autism-associated medical conditions to cultural, language, and geographic barriers preventing minority children from receiving a proper and timely diagnosis.7-8  For some cultures, there is a stigma surrounding autism that keeps parents from either acknowledging or accepting the fact their child has autism. This stigma is very much alive in Middle East  and Asian cultures.9-10 A recent article discussing this stigma in Korean-American families included several anecdotes discussing parents of children with autism who are either fearful of what autism can do to their family’s reputation in the community or actively seek out isolation from the community because of their child’s autism.10 A study utilizing immigrant subjects on this phenomenon found that some parents denied there was a problem, became fearful when the interviewer used the word ‘problem’, or attributed their child’s condition to something less severe like shyness or their child simply being a late-bloomer.11 This cultural stigma is preventing these children from receiving valuable diagnoses and treatments from the medical community.

Another theory which explores the occurrence of white children with autism receiving specialty services “is that minority children have different presentations of comorbid conditions from white children and therefore require different services.”5 For example, it is possible that Caucasian children with autism are more likely to experience gastrointestinal distress than other ethnic groups, causing clinicians to recommend specialized treatments. Another possibility is that referral bias from physicians may be playing a role.5 Others believe some “red flags” of autism do not translate between cultures, causing either parents or physicians to misinterpret the signs. For example, failure to make eye contact is one of the indications of autism in western medicine, but in some Asian cultures making direct eye contact with adults is considered disrespectful.11  Whatever the reason, researchers universally agree that there must be more of an effort to close the racial gap for autism diagnosis and treatment and that more research must be conducted on these issues.

What’s Being Done?
In 2011, a comprehensive study of autism prevalence found that approximately 2.64% (1 in 38) children in South Korea have an autism spectrum disorder.12 The results of the study do not necessarily indicate that this population is more to develop ASD, but that similar results may be found if researchers focused on other understudied, non-clinical populations.12 Inspired by this study, Autism Speaks is teaming up with churches, doctors, schools, and news organizations in Flushing, where the bulk of New York City’s 90,000 Korean residents live, to increase the awareness of autism. Autism Speaks interviewed community members, adapted autism literature for Korean readers, briefed local Korean news media on the project, and disseminated the translated materials to 60 pediatricians, preschools, and early childhood centers.10 After one year, “researchers will measure whether several early childhood agencies that contract with the city are seeing spikes in requests for help from Koreans grappling with autism.”10

Autism Speaks has unveiled domestic and international initiatives that directly target minority populations to encourage them to become more knowledgeable about autism. As part of their “Learn the Signs”campaign, the advocacy organization has spearheaded “Maybe” advertisements to help reach African American and Hispanic families. The campaign is a series of nationwide public services announcements broadcast in English and Spanish that encourages families to learn and recognize the signs of autism as early as possible.13 The organization has also implemented regional initiatives to target different ethnic groups in various communities. Aside from the aforementioned initiative taking place in Flushing, a recent partnership between Autism Speaks and the National Black Church Initiative has resulted “in a campaign to reduce the average age of diagnosis and increase access to quality intervention African American communities.”13 The pilot phase of this program will focus on distributing literature with subject matter detailing how to recognize the signs of autism, to communicate your concerns with healthcare providers, and to find free evaluation and intervention services to 150 Atlanta-based churches.13 In an effort to target the Latino population, the Centers for Disease Control and Prevention has created Developmental Milestones Checklists  that are available in Spanish. The hope is that efforts like these will reach minority communities and help a higher percentage of at risk minority children to receive proper diagnostic evaluations and early intervention treatments.  


References:
1.    Singer, Emily. “Racial Care.” Simons Foundation Autism Research Initiative (SFARI). August 12, 2013. Accessed July 2, 2013. https://sfari.org/ne...2/colorful-care.
2.    Heasley, Shaun. “Race, Ethnicity May Influence Access to Autism Care.” Disability Scoop. June 25, 2013. Accessed July 2, 2013. http://www.disabilit...ism-care/18234/.
3.    Stern, Victoria. “Groups Aim to Recruit more Racial Minorities for Genetic Studies.” Simons Foundation Autism Research Initiative (SFARI). August 6, 2010. Accessed July 2, 2013. http://sfari.org/new...genetic-studies.
4.    Neergaard, Lauran. “Autism Not Diagnosed as Early in Minority Children: Study.” Huffington Post. February 28, 2012. Accessed July 2, 2013. http://www.huffingto..._n_1306272.html.
5.    Finger-Broder, Sarabeth, Amy Shui, Christian D. Pulcini, Daniel Kurowski, and James M. Perrin. “Racial and Ethnic Difference in Subspecialty Service Use by Children With Autism.” Pediatrics 132, no. 1 (July 2013): 94-100. Accessed July 2, 2013. http://pediatrics.aa...6.full.pdf html.
6.    Flores, Gleen and Sandra C. Tomany-Koman. “Racial and Ethnic Disparities in Medical and Dental Health, Access to Care, and Use of Services in US Children.” Pediatrics 121, no. 2 (February 2008): 286-298. Accessed July 2, 2013. http://pediatrics.aa...6.full.pdf html.
7.    Vahabzadeh, Arshya. “Minority Children with Autism Lack Access to Specialists.” CNN (The Chart online blog), June 17, 2013. Accessed July 2, 2013. http://thechart.blog...to-specialists/.
8.    “Minority Children with Autism Less Likely to Receive Specialty Care.” Autism Speaks, Inc. June 17, 2013. Accessed July 2, 2013. http://www.autismspe...-specialty-care.
9.       Coutré, Lydia. “Philanthropy Beat: Plymouth Native’s Autism Project to Serve West Bank City.” Star Tribune Local, July 1, 2013. Accessed July 3, 2013. http://www.startribu.../213926371.html.
10.   Baker, Al. “Working to Combat the Stigma of Autism.” New York Times, June 30, 2013. Accessed July 3, 2013. http://www.nytimes.c...anted=all&_r=3.
11.   Geggel, Laura. “Minority Outreach.” Simons Foundation Autism Research Initiative (SFARI). Accessed July 3, 2013. https://sfari.org/ne...nority-outreach.
12.   “New Study Reveals Autism Prevalence in South Korea Estimated to be 2.6% or 1 in 38 Children.” Autism Speaks, Inc. May 9, 2011. Accessed July 3, 2013.
13.   “Autism Speaks Launches New Ad Council Campaign – “Maybe.” Autism Speaks, Inc. Accessed July 3, 2013. http://www.autismspe...ign-maybe-signs.




It's good to see that something is being done about it. I can see where certain minorities would fall through the cracks purely due to language barriers.