African American Families and Autism
Rachel Robertson
Duquenes University* Pittsburgh, PA
For the past year I’ve been working with African American families with children with autism and challenging behavior. I’m pleased to share some of what I’ve learned about obstacles some African American families face in obtaining effective autism treatment and some thoughts about what could be done to help.
One of the biggest obstacles – it was very difficult finding African American families with children with autism who were willing to participate in my study, which was aimed at helping parents improve their children’s behavior. Usually, families line up to participate since it is helpful to them at home. So why would this be? First, it took a while before I hit upon the best channels for getting the information about the study to potential participants (See Hatchett, Holmes, Duran, & Davis, 2000 for more about research recruitment and African Americans). But second, families that would have been appropriate for the study may have seen the information and not responded. The mothers who did eventually participate described pressures from family and friends NOT to seek treatment and therapy. They said that others in their community thought they were wasting their time with treatments because a) there was nothing really wrong with their child, b) if something was wrong, their child would grow out of it, c) they just needed to be tougher on their child’s behavior, or d) God made their child this way and prayer was the only thing that could help.
Most of the moms in my study described themselves as unusual in the African American community in that they actively seek professional treatment for their children with autism (often against the advice of those closest to them). Little research currently exists on the experiences of African American families with children with autism (Carr & Lord, 2012); however Graves et al. (2011) described cultural beliefs that “the future is in God’s hands” and “what will be, will be” as decreasing the likelihood that African American women would participate in genetic screening for breast cancer. Gourdine, Baffour, and Teasley (2011) similarly reported that religious faith was likely to affect how African American families viewed having a child with autism. Gourdine et al. described how religion can be a strength of African American families with children with autism, and Carr & Lord stated that religion could protect African American mothers (particularly those in lower socioeconomic groups) from negative feelings associated with raising a child with autism, but the findings of Graves et al. also show how such faith could interfere with seeking help for their child.
My participant moms and African American service providers said there is a serious lack of understanding of autism in the African American community. As a result of this misunderstanding, many families experience severe denial and shame about having a child with autism, which is very common among other non-Western cultures (Grinker, 2008). A multicultural center with which I partnered initially offered to contact families of children with autism, but later refused to do so, saying they didn’t feel comfortable because autism just wasn’t talked about in the community. One of the moms in my study said she worked with someone who was an African American mother of a child with autism but that she didn’t know who it was, because the person sought her advice anonymously and had never approached her in person. Another participating mom said that her family and friends initially believed she must have been drinking or using drugs while pregnant to have a child with autism – imagine the shame, guilt, and grief hearing that would cause – even if you knew it wasn’t true!
Those who had worked with families with autism in the African American community said they thought this sense of shame and denial prevented many families from seeking treatment – because to get specialized therapy would be to admit that your child was different. While not specifically focused on autism, previous research with African American mothers of adolescents found that concern about the stigma that might be placed on their child (and them as parents) was reported as the greatest barrier to seeking mental health services for their child (Murray, Heflinger, Suiter, & Brody, 2011). The workers I met also said that many families didn’t seek therapy because they didn’t know it existed – that information on available resources and effective therapies could not be found in the community. Furthermore, some of my participant moms reported perceptions of prejudice from pediatricians, psychologists, and service providers, extending the time it took for their child to get diagnosed and receive services (Mandell, Listerud, Levy, Pinto-Martin, 2002). Issues around lack of access and prejudice for African Americans in the healthcare system have been described and documented by many (Smedley, Stith, & Nelson, 2003). Overall, the workers I met particularly felt that more education on autism and treatment was needed in their communities and that families didn’t understand the connections between autism and challenging behaviors and just thought their children were “being bad” if they engaged in difficult behavior.
Lack of fit between many African American families’ beliefs about behavior management and the behavior management strategies that are most effective for children with autism is also a formidable barrier. Many families were strong believers in “tough love” and were likely to use punishment-based strategies in reaction to problem behavior (LeCuyer, Christensen, Kearney, & Kitzman, 2011). One mother in my study said her parents and siblings were often at odds with a more positive, proactive strategy she tried to use with her son with autism, and family members implied that her “easiness” on him may be to blame for his problems. A proactive preventative postive approach is usually most effective, but is counterintuitive to many people and may be especially challenging for some African American families.
So what can be done to help more African American families access effective autism treatment? Getting more accurate and easily understood information on autism and effective treatment out to communities is severely needed. One of my participant moms invited me to talk at her church about autism – small steps like these may help people learn more about what autism is and why shame should not be associated with parenting a child with autism. Working through African American community groups to provide education to a broader constituency may prove more effective than replying on majority white service organizations. Community-based behavior management programs and parent support groups may be helpful as well. Additional training in cultural sensitivity for those most likely to be involved in autism diagnosis, referral, and service provision should be expanded. Increasing the number of behavior analysts and autism researchers who are African American and focusing on strengths-based approaches is likely to be more readily accepted in the community.
African American families have so many strengths, but information about autism and effective treatment (and access to it) is most readily available to the more dominant groups in our society – particularly upper income Caucasian and Asian families. It’s important that we try to find ways to help all children with autism and their families, including those who may face more than their share of obstacles in getting that help.
One of the biggest obstacles – it was very difficult finding African American families with children with autism who were willing to participate in my study, which was aimed at helping parents improve their children’s behavior. Usually, families line up to participate since it is helpful to them at home. So why would this be? First, it took a while before I hit upon the best channels for getting the information about the study to potential participants (See Hatchett, Holmes, Duran, & Davis, 2000 for more about research recruitment and African Americans). But second, families that would have been appropriate for the study may have seen the information and not responded. The mothers who did eventually participate described pressures from family and friends NOT to seek treatment and therapy. They said that others in their community thought they were wasting their time with treatments because a) there was nothing really wrong with their child, b) if something was wrong, their child would grow out of it, c) they just needed to be tougher on their child’s behavior, or d) God made their child this way and prayer was the only thing that could help.
Most of the moms in my study described themselves as unusual in the African American community in that they actively seek professional treatment for their children with autism (often against the advice of those closest to them). Little research currently exists on the experiences of African American families with children with autism (Carr & Lord, 2012); however Graves et al. (2011) described cultural beliefs that “the future is in God’s hands” and “what will be, will be” as decreasing the likelihood that African American women would participate in genetic screening for breast cancer. Gourdine, Baffour, and Teasley (2011) similarly reported that religious faith was likely to affect how African American families viewed having a child with autism. Gourdine et al. described how religion can be a strength of African American families with children with autism, and Carr & Lord stated that religion could protect African American mothers (particularly those in lower socioeconomic groups) from negative feelings associated with raising a child with autism, but the findings of Graves et al. also show how such faith could interfere with seeking help for their child.
My participant moms and African American service providers said there is a serious lack of understanding of autism in the African American community. As a result of this misunderstanding, many families experience severe denial and shame about having a child with autism, which is very common among other non-Western cultures (Grinker, 2008). A multicultural center with which I partnered initially offered to contact families of children with autism, but later refused to do so, saying they didn’t feel comfortable because autism just wasn’t talked about in the community. One of the moms in my study said she worked with someone who was an African American mother of a child with autism but that she didn’t know who it was, because the person sought her advice anonymously and had never approached her in person. Another participating mom said that her family and friends initially believed she must have been drinking or using drugs while pregnant to have a child with autism – imagine the shame, guilt, and grief hearing that would cause – even if you knew it wasn’t true!
Those who had worked with families with autism in the African American community said they thought this sense of shame and denial prevented many families from seeking treatment – because to get specialized therapy would be to admit that your child was different. While not specifically focused on autism, previous research with African American mothers of adolescents found that concern about the stigma that might be placed on their child (and them as parents) was reported as the greatest barrier to seeking mental health services for their child (Murray, Heflinger, Suiter, & Brody, 2011). The workers I met also said that many families didn’t seek therapy because they didn’t know it existed – that information on available resources and effective therapies could not be found in the community. Furthermore, some of my participant moms reported perceptions of prejudice from pediatricians, psychologists, and service providers, extending the time it took for their child to get diagnosed and receive services (Mandell, Listerud, Levy, Pinto-Martin, 2002). Issues around lack of access and prejudice for African Americans in the healthcare system have been described and documented by many (Smedley, Stith, & Nelson, 2003). Overall, the workers I met particularly felt that more education on autism and treatment was needed in their communities and that families didn’t understand the connections between autism and challenging behaviors and just thought their children were “being bad” if they engaged in difficult behavior.
Lack of fit between many African American families’ beliefs about behavior management and the behavior management strategies that are most effective for children with autism is also a formidable barrier. Many families were strong believers in “tough love” and were likely to use punishment-based strategies in reaction to problem behavior (LeCuyer, Christensen, Kearney, & Kitzman, 2011). One mother in my study said her parents and siblings were often at odds with a more positive, proactive strategy she tried to use with her son with autism, and family members implied that her “easiness” on him may be to blame for his problems. A proactive preventative postive approach is usually most effective, but is counterintuitive to many people and may be especially challenging for some African American families.
So what can be done to help more African American families access effective autism treatment? Getting more accurate and easily understood information on autism and effective treatment out to communities is severely needed. One of my participant moms invited me to talk at her church about autism – small steps like these may help people learn more about what autism is and why shame should not be associated with parenting a child with autism. Working through African American community groups to provide education to a broader constituency may prove more effective than replying on majority white service organizations. Community-based behavior management programs and parent support groups may be helpful as well. Additional training in cultural sensitivity for those most likely to be involved in autism diagnosis, referral, and service provision should be expanded. Increasing the number of behavior analysts and autism researchers who are African American and focusing on strengths-based approaches is likely to be more readily accepted in the community.
African American families have so many strengths, but information about autism and effective treatment (and access to it) is most readily available to the more dominant groups in our society – particularly upper income Caucasian and Asian families. It’s important that we try to find ways to help all children with autism and their families, including those who may face more than their share of obstacles in getting that help.
References
Carr, T. & Lord, C. (2012). Longitudinal study of perceived negative impact in African American and Caucasian mothers of children with autism spectrum disorder. Autism, first published online on July 2, 2012.
doi: 10.1177/1362361311435155
Gourdine, R., Baffour, T., and Teasley, M. (2011). Autism and the African American community. Social Work in Public Health, 26, 454-470.
Graves, K., Christopher, J., Harrison, T., Peshkin, B., Isaacs, C., & Sheppard, V. (2011). Providers’ perceptions and practices regarding BRCA1/2 genetic counseling and testing in African American women. Journal of Genetic Counseling, 20, 674-689. Grinker, R.R.(2008) Unstrange Minds: Remapping the world of autism. New York: Basic Books, Inc.
Hatchett, B., Holmes, K., Duran, D., & Davis, C. (2000). African Americans and research participation: The recruitment process. Journal of Black Studies, 30, 664-675.
LeCuyer, E., Christensen, J., Kearney, M., & Kitzman, H. (2011). African American mothers’ self-described discipline strategies with young children. Issues in Comprehensive Pediatric Nursing, 34, 144-162.
Mandell, D., Listerud, J., Levy, S., Pinto-Martin, J. (2002). Race differences in the age at diagnosis among medicaid-eligible children with autism. Journal of the American Academy of Child and Adolescent Psychology, 41, 1447-1453.
Murray, V., Heflinger, C., Suiter, F., & Brody, G. (2011). Examining perceptions about mental health care and help-seeking among rural African American families of adolescents. Journal of Youth and Adolescence, 40, 1118-1131.
Smedley, B., Stith, A., & Nelson, A. (Eds.) (2003). Unequal treatment: Confronting racial and ethnic disparities in health care. Washington, DC: National Academic Press.
Many thanks to Rachel E. Robertson Ph.D., (Special Education, Vanderbilt University) is a BCBA and Certified Special Education Teacher, Assistant Professor, Department of Counseling, Psychology, and Special Education, Duquesne University, Pittsburgh, PA where she is a Duquesne University Barbara A. Sizemore Fellow, devoted to enhancing research in urban education issues *Aug 1, 2013, University of Pittsburgh in the Department of Instruction and Learning
Carr, T. & Lord, C. (2012). Longitudinal study of perceived negative impact in African American and Caucasian mothers of children with autism spectrum disorder. Autism, first published online on July 2, 2012.
doi: 10.1177/1362361311435155
Gourdine, R., Baffour, T., and Teasley, M. (2011). Autism and the African American community. Social Work in Public Health, 26, 454-470.
Graves, K., Christopher, J., Harrison, T., Peshkin, B., Isaacs, C., & Sheppard, V. (2011). Providers’ perceptions and practices regarding BRCA1/2 genetic counseling and testing in African American women. Journal of Genetic Counseling, 20, 674-689. Grinker, R.R.(2008) Unstrange Minds: Remapping the world of autism. New York: Basic Books, Inc.
Hatchett, B., Holmes, K., Duran, D., & Davis, C. (2000). African Americans and research participation: The recruitment process. Journal of Black Studies, 30, 664-675.
LeCuyer, E., Christensen, J., Kearney, M., & Kitzman, H. (2011). African American mothers’ self-described discipline strategies with young children. Issues in Comprehensive Pediatric Nursing, 34, 144-162.
Mandell, D., Listerud, J., Levy, S., Pinto-Martin, J. (2002). Race differences in the age at diagnosis among medicaid-eligible children with autism. Journal of the American Academy of Child and Adolescent Psychology, 41, 1447-1453.
Murray, V., Heflinger, C., Suiter, F., & Brody, G. (2011). Examining perceptions about mental health care and help-seeking among rural African American families of adolescents. Journal of Youth and Adolescence, 40, 1118-1131.
Smedley, B., Stith, A., & Nelson, A. (Eds.) (2003). Unequal treatment: Confronting racial and ethnic disparities in health care. Washington, DC: National Academic Press.
Many thanks to Rachel E. Robertson Ph.D., (Special Education, Vanderbilt University) is a BCBA and Certified Special Education Teacher, Assistant Professor, Department of Counseling, Psychology, and Special Education, Duquesne University, Pittsburgh, PA where she is a Duquesne University Barbara A. Sizemore Fellow, devoted to enhancing research in urban education issues *Aug 1, 2013, University of Pittsburgh in the Department of Instruction and Learning