Microsoft Word - Manuscript 7_12.12.docx Graduate Student Journal of Psychology (GSJP), Volume 18, Special Issue 2022 Raising a Child of Color with Developmental Disability: Systematic Review Annahita D. Modirrousta, B.A Department of Psychology, Miami University Yvette R. Harris, Ph.D Department of Psychology, Miami University Parenting a child of color with a developmental disability presents unique challenges for parents. We address those challenges in this review paper as they cohere around three major themes: the parental appraisal of their child's disability, social stigma, and lack of resources and help for their children. We conclude the review paper with suggestions on how researchers, educators, and practitioners might work with parents raising children of color with developmental disabilities. Keywords: developmental disabilities, parents, children, race, ethnicity Raising a Child of Color with a Developmental Disability: Narrative Review Developmental disabilities consist of conditions that impair learning, language, physical traits, and behavior (Holm, 1989). When it comes to parental experiences raising a child with a developmental disability, the literature explains advances in care for these children. Parents of children with developmental disabilities have benefited from an increase in the number and quality of services for their children. The increased awareness and knowledge about developmental disabilities has helped them provide better care for their child (Hodapp & Ly, 2006). However, these benefits did not apply to children of color, who are non-White children in predominantly White countries (Comas-Díaz, 2000). There has been a clear pattern in examining the literature catered to parents of children of color with developmental disabilities. Many parents have little knowledge about the disability, and as a result, they either fail to detect symptoms or assume their child would "grow" out of symptoms. This leads to parents not seeking help for their child (Zuckerman et al., 2014). Additionally, these parents fail to receive the necessary support from providers due to lack of access (Nasser et al., 2017). In examining the existing literature, we found few articles detailing how parents experience raising a child of color with a developmental disability. This lack of research seems puzzling, given the statistics on children of color with a developmental disability. Figure 1 (US Department of Education, 2012) demonstrates the rates of developmental disability among different races and ethnicities. Non-White children, except for Asian children, have higher rates of learning disability than White children, and Asian children have disproportionately high rates of autism and language impairment. Considering the high rate of developmental disability for children of color, the lack of research and resources regarding the experiences of parents raising children of color with developmental disabilities is a concern (Klingner et al., 2007). The following review paper on parenting of children of color with developmental disabilities is necessary to bridge the gap in how race and ethnicity affect parenting. This gap exists because there has been a lack of research and concern on the topic (Klingner et al., 2007). Addressing this topic is crucial to help parents of children of color with © 2022, Graduate Student Journal of Psychology, Teachers College, Columbia University. ALL RIGHTS RESERVED. Graduate Journal of Psychology 18, pp-pp. Graduate Student Journal of Psychology Modirrousta & Harris developmental disabilities, who are underrepresented in research, receive the needed help. This review paper aims to bring attention to parents' struggles raising children of color with developmental disabilities, which would help fill the gap. These parents experience stigma, defined by a trait that is viewed as unfavorable and thus are discriminated against in society (Ahmedani, 2011). Parents also experience a lack of help and resources available to them. In writing this review paper, we wanted to highlight parental variables and societal variables that influence the quality of medical assistance and treatment provided to children of color with developmental disabilities. Using a positivist lens, we will therefore review the literature on different cultures and form conclusions on common themes within them. Lastly, this paper will refer to "children of color.” Still, we will warn that the research on different ethnicities does not generalize to all children of color. Studies were done on a small sample, limiting generalizability. This paper also recognizes that adoption and interracial marriage might result in children of color who do not have parents of color. This paper merely examines multiple cultures to see how they experience a child with developmental disabilities. The term "children of color" is used as a blanket term for these cultures. We use the words "of color" rather than "minority" to emphasize that the children are non-White and are minorities in predominantly White countries. Figure 1 Percentage of 3-21-year-olds serving under the Individuals with Disabilities Education Act (IDEA) by type of disability and race/ethnicity Methods This paper will examine first-world high-income countries predominantly. The countries chosen were the United States, Ireland, and Israel. This is to consider how countries of different cultures have different norms for parents of children with developmental disabilities. These parents will also be of an ethnic minority; an ethnic minority is someone of a race or ethnicity that is the minority in the country in which they reside (Vega & Rumbaut, 1991). The ethnicities chosen were Latinos, African Americans, Asian Americans, Pakistanis, Filipinos, and Arabs. This is to capture the experience of being a minority group in a country that may not respond to their needs as efficiently as a majority group's needs (Reichard et al., 2004). The developmental disabilities studied include autism spectrum disorder (ASD), intellectual disability (ID), Down syndrome, Raising a Child of Color with Developmental Disability and attention deficit hyperactivity disorder (ADHD). The children studied were mid to high functioning. For this narrative review, one of the authors of this manuscript used PsychInfo and Google Scholar to find empirical articles related to our topic. We entered five lines of related keywords with each word separated by OR (and/or), and we separated each line by AND. 1. Child: child/children OR elementary OR kids We chose these keywords because we are researching elementary and kindergarten children around four to twelve years old. 2. Developmental disabilities: developmental disorders OR neurodevelopmental disorders OR autism spectrum disorders OR learning disorders OR intellectual disorder We chose these keywords to examine different disabilities. We included neurodevelopmental disorders like ASD or ADHD, intellectual disorders like ID, and other developmental disorders like Down syndrome. We did not find much literature about learning disorders or other developmental disorders, but that would be a future research topic. 3. Race/ethnicity: blacks OR asians OR latino/as OR minority groups We included different races and ethnicities, such as Black, Asians, and Latinos. We also used the blanket term "minority groups" to encompass other minority races and ethnicities, such as Pakistanis and Arabs. We did not find much information about different ethnicities, leading to future research. 4. Parenting: parenting styles OR skills OR practices OR attitudes Considering this paper's topic examines the parenting of children of color with developmental disabilities, we searched for articles detailing parental practices. 5. Parent-child relations: attachment OR father/mother-child relations OR child discipline OR child-rearing practices OR parental involvement We examined how parents raise their children and the relations between parents and their children. This is crucial because learning how parents discipline and involve themselves in their children's development can help understand how parents experience having a child with a developmental disability. From these keywords, we found 17 articles. We initially read the abstracts and picked the studies that best suited our paper. Then, we read the full papers and used those studies' results in our review. We examined citations for each article based on their relevance to our paper and used new sources for this review, resulting in 45 articles and one figure. Our inclusion criteria were studies that depicted parental involvement in raising children of color with a developmental disability. The children had to be a racial or ethnic minority in their country. We excluded studies of children with comorbid disorders and families who are the ethnic majority in their country (e.g., Indian families in India). These articles revealed three themes regarding how parents experience raising a child of color with a developmental disability. By reading through the literature, it became evident that there were patterns of experiences across different cultures. The papers used in this study revealed many similarities in the parental raising of children of color with developmental disabilities, which fit into three themes. These themes are the way Graduate Student Journal of Psychology Graduate Student Journal of Psychology Modirrousta & Harris parents appraise their child's disability, the social stigma parents experience, and the lack of resources and help available for parents and their child. Parental Appraisal of Disability Although there are differences in how various ethnic groups appraise disability, there are some core similarities. For example, Latino parents expect their child to reach developmental milestones such as recognizing faces and smiling later than other parents. Due to this, they may fail to notice signs of a developmental disability and do not get help until much later. Different milestones are expected for their child with developmental disabilities due to underlying cultural beliefs and child-rearing practices (Pachter & Dworkin, 1997). Latino, African American, and Asian parents are also more likely to attribute their child's symptoms to emotion or personality factors rather than disability and refuse to accept biological explanations for mental illness; this keeps parents from seeking help (Yeh et al., 2004). Some parents tend to attribute symptoms of disability to their unique child-rearing strategies. Instead of understanding the cause of developmental disability, they believe the way they raise their children affects how they express these symptoms, rather than the disability itself. Specific appraisals can lead to parents not trusting doctors and taking responsibility for their child's disability due to cultural norms. Zuckerman et al. (2014) found that Latino parents who watched vignettes of a parent and her child with ASD attributed the child's symptoms to family issues and poor relationships among family members instead of ASD. These parents believed that they could fix their child's problems through improving family interactions and only supported going to the doctor to seek family therapy resources rather than a diagnosis. As a result, parents concluded this might delay the child's diagnosis and treatment, which would keep the child from getting adequate help as soon as possible. Furthermore, Nasser et al. (2017) found that Palestinian families in Israel with a child with intellectual disability (ID) viewed their child's diagnosis as evidence of abandonment and parental failure. They believed they had done something wrong as parents, causing their child to develop ID. Additionally, some parents of children of color with developmental disabilities believe that their child will eventually grow out of their symptoms. Consequently, these parents are less likely to obtain a diagnosis and reject the doctors' assessment. This results in the child not getting the needed diagnosis to help the child. In Zuckerman et al. (2014, p. x), Latino parents determined that the child was exhibiting "bad toddler behavior" and would grow out of his problems. In contrast, other parents believed this was normal behavior of a child without siblings. This resulted in parents dismissing the pediatrician's advice and assuming that their child just needed more space and time. Also, Nasser et al. (2017) found that the parents resisted treatment initially and believed it was their role, not the doctor's, to treat their child with ID. Also, they believed that their child would improve and integrate into family life despite evidence to the contrary. Finally, Schuman (2000) revealed that Mexican parents with a child with a developmental disability brought their child to a healthcare provider for assessment. Still, parents often dismissed providers' input while having concerns that providers found irrelevant. Mexican parents identified behavioral issues and speech and language delays in their child and worried about the long-term effects of the "illness." However, while they detailed signs of developmental delay in their child, they did not fully believe there was something wrong with the child until later in development when changes were noticeable. Raising a Child of Color with Developmental Disability For some Latino families, parents begin with very little knowledge about developmental disabilities. However, they would learn about developmental disability over time and become more knowledgeable about their child's disability. Zuckerman et al. (2014) found that Latino parents had low knowledge about autism, and it was even lower in parents who only spoke Spanish. Many parents did not know what the word "autism" even meant. At the start of their discovery of their child's disability, parents felt ashamed of their child's symptoms or felt strain, anger, and frustration towards their child. A study showed that Mexican parents who watched vignettes of children with autism felt embarrassed of their autism symptoms (Zuckerman et al., 2014). These parents felt that ASD was shameful, worried about facing rejection from society for having a child with ASD, and believed the child would place an unpleasant burden on family members. Finally, Kim et al. (2020) showed that for parents of African American children with autism, the higher the family resilience, which is strength against adversity, the lower the parenting stress. This means that African American parents of children with ASD who had lower resilience experienced more stress and strain due to their child's symptoms. Some parents immediately took responsibility for their children's development and even quit their jobs or lived alone to take care of their children. In Burkett et al. (2017), African American parents of children with ASD showed a core theme of responsibility. These parents believed that respect was an essential learned skill, and they thought it was their responsibility to teach respect to their children. They believed this would cause their children to develop manners and not engage in their symptoms. The single mothers in the study lived alone with their children due to their personal experience of having single mothers. The responsibility of parenting their children with autism increased their sense of isolation. They believed this was the best way to raise their children and take responsibility. These mothers watched over their children and monitored their children's progress to prepare them to grow into independent adults. Meanwhile, two-parent African American families expressed that they shared the responsibility for their children's care. They depended on each other to help the children and felt sincere appreciation for the other parent. Thus, parents put the responsibility of raising their child of color with a developmental disability on themselves, which led to the belief that it was their role to treat their child rather than seek help. Some parents of children of color with developmental disabilities learn to be optimistic about their child's disability by using spirituality, faith, and religion. In Habib et al. (2017), some Pakistani mothers with a child with ASD reported that they were satisfied with their situation and had a positive experience raising their child in Ireland. Also, the mothers' religious beliefs were an essential protective factor for them, as they could use religion as a coping mechanism. A protective factor is defined as a trait or circumstance that allows parents to cope with their mental health and their child's condition. They also viewed their child's disability as God's will. Lastly, for African American parents of children with ASD, a significant theme in their experience was their faith in God. They expressed they were blessed to care for their child with ASD, with many saying it led to personal and spiritual growth. Although these parents did not regularly attend church, they believed they were connected spiritually to God. This connection was essential for their personal development, coping with stress, and maintaining hopefulness (Burkett et al., 2017). As a result, religion helped African American families handle the diagnosis better. Research shows that African American mothers cope better than White mothers with their child's diagnosis of ASD; they have higher well-being, fewer burdens, and Graduate Student Journal of Psychology Graduate Student Journal of Psychology Modirrousta & Harris lower negative impact (Bishop et al., 2007). While negative impact increased as their child grew into adolescence, the negative impact was significantly lower for African American mothers than White mothers. This was partly due to the African American culture of kinship and spirituality (Carr & Lord, 2013). Stigma and Social Reaction Stigma and social reaction are also influential. The response of society to a child with a developmental disability constitutes stigma when it is negative. When children with developmental disabilities are stigmatized, this can harm their development, decrease social support, and cast guilt and shame on parents (Werner & Shulman, 2013). As an illustration, African American parents of children with ASD faced stigma with regards to their child's diagnosis. They described how they were often judged in public and blamed for their child's behavior. Some mothers were told they lacked "knowing how to discipline their child" (Burkett et al., 2017, p. x). Asian American parents also feared being stigmatized for their child's symptoms by their community. Due to fear of being shunned or judged by their community, Asian American parents isolated themselves and kept their child's diagnosis a secret (He, 2017). This isolation and discrimination led to fewer social supports for their child and worsened psychological disorders for the parents. Due to the parents' mental health problems, they were less likely to seek help for their child (Jegatheesan, 2009). Shame and stigma can also lead to parents underreporting their child's diagnosis and delayed intervention (Leong et al., 2013). Filipino American parents of children with ASD negatively perceived their child's disability due to societal discrimination, which kept them from seeking help for their child (Anzaldo, 2021). In some cultures, societal stigma can result in high-stress levels for parents of children with developmental disabilities. In Arab culture, having a family member with a developmental disability could decrease social status and hinder chances of marriage (Dababnah & Parish, 2013). As a result, Arab parents of children with ASD felt shame and guilt at their child's symptoms. Due to this shame, these parents only sought treatment as a last resort (Dardas & Simmons, 2015). These children may also receive adverse reactions from family members. For African American parents, their family members or friends believed that their child's behavior was their fault. Single African American mothers would heavily rely on their mothers and other family members to care for the child. When they received unhelpful feedback, the mothers experienced guilt and shame, which kept them from giving their child the best care (Burkett et al., 2017). In Pakistani families, some mothers of a child with ASD explained that due to increased awareness of ASD in Pakistan, they could speak with their family about this issue. It helped with their interactions with their family members. However, some mothers said their family members lacked knowledge about ASD and that an increase in knowledge could help meet their child's needs with ASD (Habib et al., 2017). Lack of access to education and resources can heighten this stigma, which we will address in the next segment. Lack of Resources and Assistance from Providers Many children of color in the United States experience higher poverty rates than their White counterparts. According to Costello et al. (2001), in North Carolina, 52% of African American families lived below federal poverty, compared to 18.2% of White families. African American families' mean income was 62% that of White families. Also, African American and Hispanic children are overrepresented in low-income families (Cooper et al., 2010). The 2007-2011 American Community Survey (Macartney et al., Raising a Child of Color with Developmental Disability 2013) found that 25.8% of African Americans and 23.2% of Latinos lived in poverty compared to 11.6% of Whites. Poverty also affects ethnic minorities in other countries; one-third of Palestinian minorities in Israel live in poverty (Hilal, 2012). This discrepancy in wealth results in fewer resources available to the parents. A lack of resources also reduces the urgency of a diagnosis. African American children were 30.0% less likely to be diagnosed than White children (Baio, 2014). Latinos were half as likely to get diagnosed as non-Latinos and more likely to have severe symptoms. This is because African American, Latino, and low-income children had decreased access to services that would allow them to get a diagnosis. They lacked proper insurance, money, and access to a provider nearby, which made treatment more difficult (Liptak et al., 2008). African American children received their diagnosis 1.6 years after White children and took more time in care before getting diagnosed; Latino children received their diagnosis 2.5 years later than White children (Mandell et al., 2002). Overall, African American, Hispanic, or other minority race children were less likely than White children to be documented with ASD. However, despite the lower rate of diagnosis, minority and low-income children were more likely to exhibit symptoms of a developmental disorder than high-income and White children (Mandell et al., 2009). Palestinian parents living in Israel also had a hard time getting treatment for their child with ID due to low socioeconomic status (SES) and social status in Israel (Nasser et al., 2017). Low socioeconomic status, defined as living in poverty, is associated with early life stress and delays in development and lead to the inability to afford services and treatment (Farah et al., 2006). Also, there were few culturally competent services within their community, and there were few resources for their children. Children with ID of Palestinian parents in Israel especially struggled with high disability rates, extreme inequality, and high personal and family stress (Nasser et al., 2017). Another issue that parents faced was that their children received less help from providers than White children. Zuckerman et al. (2014) found that Latino parents with a child with ASD felt uncomfortable interacting with doctors because they thought the doctors made them feel unsafe. Therefore, they would not be forthcoming with their concerns or would deny issues. Guerrero et al. (2011) also found that parents of minority children were less likely to be helped by a healthcare provider. Specifically, African American and Latino parents were significantly less likely to have their concerns validated by a healthcare provider than White parents. Low-income parents also experienced this phenomenon, which brings up the intersection between race and SES. Also, Son et al. (2020) found that Latino children with developmental disabilities such as ASD whose parents received passive or reassuring responses from their providers, such as dismissing any doubts or not providing information about a diagnosis or referrals, were less likely to receive specialty services than White children. In this instance, specialty services are defined as specialty treatments geared towards developmental disabilities to help people with these conditions. This meant that when parents were passively rather than actively treated by providers, their children did not receive the proper service. Latino parents reported fewer specialty services for their child than White parents due to access, communication, or cultural barriers to ASD care for Latino children. Parents of these children receive few resources or access to medical care due to low SES and their language background. For example, Latino parents of children with ASD struggled to obtain resources to help with their child's disability. This happened because of the lack of adequate Spanish resources or difficulty understanding English resources due to poor interpreters (Zuckerman et al., 2014). Parents felt that the information Graduate Student Journal of Psychology Graduate Student Journal of Psychology Modirrousta & Harris available to them about ASD was low quality because there were no Spanish materials available. The English material was written in jargon, and the available material was written in incorrect Spanish. Interpreters were unavailable or poorly trained and were therefore of little help to the parents. Due to low levels of information and the high stigma of autism (as mentioned in the first two sections), parents normalized their child's behavior. They denied any problems, which led to hesitation to get treatment for their child. Due to poverty, low English proficiency, and lack of empowerment to get services, these parents had poor care access. Providers would dismiss concerns, and the diagnostic process was uncomfortable for the child (Zuckerman et al., 2014). Many children of color with developmental disabilities struggle with receiving care services of high quality and access to specialty services. Magaña et al. (2016) found that Latino children were less likely to receive specialty services than White children for their developmental disabilities. The types of specialty services include behavioral intervention, occupational therapy, social skills training, and sensory integration therapy. The National Survey of Children with Special Health Care Needs (Liptak et al., 2008) showed that Latino parents had a bad relationship with providers compared to White parents, such as feeling unwelcome, not spending much time with their child, and low cultural sensitivity. An example of feeling unwelcome includes not feeling like a partner to the provider and feeling like the provider did not listen to parental concerns. This led to fewer services for their child with ASD (Parish et al., 2012). Providers struggled with recognizing ASD symptoms in Latino children, viewed Latino parents as less knowledgeable about ASD, and did not refer children to specialists (Zuckerman et al., 2013). Latino parents struggled with dealing with the diagnosis, stigma, and using services (Blanche et al., 2015). When providers offered a passive or reassuring response, Latino parents used fewer services for their children with a developmental disability (Gannotti et al., 2004). Asian American parents of children with developmental disabilities also struggled with communicating with providers. This is due to the use of complex language, stereotypes about Asian culture, providers' negative views of alternative medicine, focusing on the child's weaknesses rather than strengths, and providers' bluntness contrasting with parents' hesitancy (Jegatheesan, 2009). Meanwhile, African American parents of children with ASD felt that providers were rude and acted "like they knew everything," which soured their relationship. They also felt that providers did not listen and disregarded parents' concerns (Burkett et al., 2015). Lastly, these parents struggled to receive assistance from their child's school. Habib et al.'s (2017) study showed that some Pakistani mothers complained about the lack of resources at schools, the lack of measures including children with ASD in classrooms, the lack of ASD-specific training for teachers, and the poor communication between education and health services. However, other mothers in the study had positive experiences of schools, communicated effectively with schools and healthcare providers, and believed in the positive impact of parenting a child with ASD. Conclusion and Suggestions for Future Directions In summary, we identified three major themes in this review paper regarding parents' experiences raising children of color with developmental disabilities. First, parents appraise and react to their child's disability differently. Second, parents face stigma from society and family members due to their child's developmental disability. Third, parents struggle with finding proper resources and assistance from providers and schools. These three themes merge to form an image of those parents and their children's experiences. Raising a Child of Color with Developmental Disability Negative parental appraisal of their child's disability can lead to parents not getting help for their child, worsening providers' lack of willingness to treat the child. Also, stigma can impact parents' views of their child's disability and make them feel ashamed of their child's condition, preventing parents from getting help for their child due to fear of judgment. Figure 2 demonstrates the core themes of this review. Figure 2 According to Figure 2, for parental appraisal, parents have different expectations of their child's development and take responsibility for their child's disability. For social stigma, society judges parents and their families, which results in stress for the parents. For lack of help and resources, children of color with developmental disabilities are diagnosed at less frequency and they receive less care from providers. Parents have trouble communicating with providers due to language barriers. This paper includes a few limitations. First, due to the scarce literature on the subject, we could only have a limited number of studies, which hindered generalizability. A future article would delve deeper into the topic and do a systematic review. Second, we could only include a few developmental disabilities (such as ASD and ID) but did not include other conditions. As a result, this paper is mostly skewed toward autism research. Third, this paper did not examine all ethnic minorities; future authors should analyze a broader range of cultures. From our perspective, it is vital to take an ecological/systems approach to address these issues, examining how the individuals in families react to the systems in society by which they are affected. As explained in Bronfenbrenner (2015), this approach involves finding correlations between the microsystem of families, the exosystem of the healthcare system and schools, and the macrosystem of societal expectations. The goal is to design culturally relevant and culturally anchored interventions for parents. Mendelsohn et al. (2005) tested an intervention program called the Video Interaction Project (VIP) on Latino mothers of children with risk of developmental delay. The parent-child interactions in the intervention resulted in improved development of high- risk young children. Other solutions must address faulty appraisals parents have regarding the disability of their child of color. This may involve teaching parents about developmental disabilities and educating them on the causes of these disabilities. Such an approach could counter certain false beliefs parents may hold, such as believing their child will grow out of symptoms, and their negative feelings, such as strain, anger, and frustration. As for the stigma, increasing general awareness and knowledge about Graduate Student Journal of Psychology Core Themes Parental Appraisal Different expectations Parents take responsibility Social Stigma Judged in public Results in stress Lack of help and resources Fewer diagnoses Poor communication Graduate Student Journal of Psychology Modirrousta & Harris developmental disability in communities of color is a start. In doing so, the blame and guilt that parents experience might decrease. Finally, to resolve the lack of resources or help, we must inform providers, educators, and practitioners of the differences in the child's symptomatology and the parents' reactions based on ethnicity. 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