The prevalence of autism is thought to affect children of all races and ethnicities at an equal rate

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The prevalence of autism is thought to affect children of all races and ethnicities at an equal rate. However, there are health care disparities which make the diagnosis of autism difficult for certain populations including African Americans. There are a significant number of studies in public health and epidemiology that document health care disparities faced by AfricanAmerican autism families. These include diagnoses that take place later than white peers and the misdiagnosis of African American children with emotional disturbance disorders instead of autism (Mandell et al. 2009, Magaña et al. 2012, Burkett et al. 2015).

Previous research has shown that minority and other marginalized groups with autism spectrum disorder (ASD) are often underdiagnosed (Jarquin, Wiggins, Schieve, & Van Naarden-Braun, 2011; Liptak et al., 2008; Mandell et al., 2009; Travers, Tincani, & Krezmien, 2013) and underserved (Magaña, Lopez, Aguinaga, & Morton, 2013; Thomas, Ellis, McLaurin, Daniels, & Morrissey, 2007; Tregnago & Cheak-Zamora, 2012). Mandell, Listerud, Levey, and Pinto-Martin (2002) in a pioneering study identified disparities in diagnosis among children with ASD. The researchers found that including children on Medicaid, Black children were less likely to receive an appropriate diagnosis of autism than were Caucasian children and were more often misdiagnosed with conduct or adjustment disorder. Recent studies yielded similar findings of imbalances in diagnosis and access to care among minority and economically disadvantaged groups (Feinberg, Silverstein, Donahue, & Bliss, 2011; Jarquin et al., 2011; Liptak et al., 2008; Mandell, Ittenbach, Levy, & Pinto-Martin, 2007; Shattuck et al., 2009). Consequently, minority children with ASD may not benefit from appropriate, timely, evidenced-based intervention practices.

There remains a dearth of information concerning minority groups with ASD, in particular how these families experience and are affected by the disorder. Traditionally, research has not given much consideration to minority and economically disadvantaged families. Instead, research to date has been based primarily on the experiences of White, non-Hispanic, and middle class families; few studies, such as Mandell et al. (2009), have targeted minority samples. Marginalized socioeconomic status may impede the extent to which families can access ASD-related services. Understanding the impact of the pervasive developmental disorder on minority families is ultimately needed in order to better determine specific diagnosis protocols and services that may best meet their needs.

In previous literature, the severity and level of functioning due to autism varied. Autism was characterized by impairments in communication, developmental delays, impairment in social interaction, and repetitive patterns of behavior (NIH, 2014). Also, autism awareness and understanding had been illuminated through community efforts of organizations like Autism Speaks (Quirantes, 2009), Autism Society of America, and Easter Seals. Findings from the current study extended the knowledge in the discipline regarding disparities in unmet needs as expressed by the primary caregivers, and in the less than desirable experiences the caregivers endured when they realized the providers lacked the knowledge and skills to treat their child (see Chiri & Warfield, 2012). Also, the research by Chiri and Warfield (2012) and Vohra et al. (2014) was valuable in confirming the problems the target population encountered in accessing services and the quality of care they received. The cookie cutter approach to providing access to the appropriate level of care and rendering services to school-age children that is child specific does not contribute to identifying key factors to be taken into consideration in the development and delivery of healthcare (Strunk et al., 2014).

Findings from my study were consistent with Strunk et al. (2014). The two similar themes were the overall experience and challenges. One caregiver in the current study shared that there was a lack of information provided on the overall diagnosis. This was why she did not know what to expect from one day to the next. Sometimes the child’s speech was difficult to understand, and the next they could have a normal conversation. Another caregiver noted that every day was an adventure with highs and lows. The caregiver raising twin boys on different ends of the autism spectrum realized her sons needed access to services and resources that would meet their individual needs. However, the one service they both needed, ABA, had a long wait list, and there were limited providers. The other caregiver raising twins had no support to provide her with a break, like respite services, and no family member or resource to assist with getting them on and off the bus. For her, everyday living became overwhelming. Each participant shared at least one positive outcome when discussing their overall experience despite the barriers, challenges, and stressors they faced due to their resilience (see Rutter, 2013). In this study, caregivers recognized the importance of family relationships and the impact on positive outcomes for their children. Parenting resilience facilitated their ability to adjust to the challenges, which was also noted by Suzuki et al. (2013).

Other subthemes that surfaced in the current study and the study conducted by Kapp and Brown (2011) were spousal relationships, family time, and routines. School staff helped to establish a regular routine for the child with autism while away from home. The children in the home who did not have a diagnosis of autism supported their sibling, which created a sense of togetherness as expressed by many of the caregivers. Stressors the parents experienced were eased. Although the dynamic had changed after the diagnosis, they became closer than ever with the exception of the caregiver of the fraternal twins. She was divorced from her husband shortly after the twins were diagnosed, and the family adjusted.

Greef and Nolting (2013) compared stress levels of families who had a child with autism versus those that did not. The similar finding revealed in my study was having a child with autism and one without in the same household tested caregivers’ resolve and ingenuity in planning activities that met the needs of the entire family. The child with autism gaining access to needed services depended on the type of insurance they had: no wait list and access to services for the children with autism who had Medicaid, and a wait list for those who had private insurance due to a limited number of service providers. Increased rates of utilization of medical services was noted in the study by BroderFingert et al. (2014) and was identified by three of the caregivers in my study. Within this study, all of the caregivers said it was important that the service provider possess the skillset to treat their children and help them to address as well as understand the change in behaviors. Angell and Solomon (2014) provided the premise for understanding those service provider and family relationships. This helped to facilitate the primary caregiver’s acceptance of the diagnosis while at the same process their emotions regarding this major life change and the struggle with how to pay for services. Similar to findings from a Thomas et al. (2007), caregivers in the study expressed a desire for support to address the unmet needs and to access much needed resources and support. Broader-Fingert et al. (2014) espoused the importance of increasing the service provider’s confidence to care for children with autism by enhancing their understanding of the diagnosis which facilitated access to care which would help to meet some of the unmet needs.

Collectively, all parents shared stories about the negative emotional, psychological, physiological, relational, and financial impacts of the disorder as a result of the ongoing demands in the chronic phase. These findings are consistent with current challenges highlighted in the literature describing the negative impacts of autism on the family (Cassidy et al., 2008; Hayes & Watson, 2013; Karst & Van Hecke, 2012; Lukemeyer et al., 2000; Porterfield, 2002; Rogers & Hogan, 2003; Zablotsky et al., 2014). The majority parents shared their experiences regarding challenges and dissatisfaction with professional care, which are also noted in the literature (Hodgetts, Nicholas, Zwaigenbaum, & McConnell, 2013; Zablotsky et al., 2014). However, the care challenges faced by some of the parents were related to lack of access to adequate resources. Deep analysis of the data revealed that most parents were not just surviving autism but to varying extents were thriving in the midst of the challenge. Parents reported that they rallied their strength and experienced growth as they addressed realties of autism. Parents’ adaptability and in some cases personal growth were influenced by key factors. All parents possessed one or more characteristics that moderate the negative effects of autism on the families’ functioning.

The minority parents shared inspiring stories of adapting to rearing a child with autism as they rallied their strength; some were bettered by the experience. Their experience was not one of merely “existing” in the midst of the chronic phase or simply surviving the responsibilities of ASD; for most parents this time was marked by advancement and progressive change. To varying extents, parents reported instances of personal and parental unit change that enabled them to cope effectively with the demands of the chronic disorder. Parents’ adaptability and resilience were influenced by six factors: (1) spiritual or religious consciousness, (2) settling into the insecurity, (3) conjuring a strong self, (4) a need to know, (5) advocacy and mentorship, and (6) shared support. Finally, the analysis highlights parents’ hopes and desires for their children’s future, in addition to their expressed needs from professionals and treatment. The parents’ hopes and desires possibly reflect an outlook needed to endure the chronic phase of autism.

Parents explained that even with disappointment, they were able to maintain their parental efficacy. Several parents shared disappointments they had experienced related to acquiring needed or desired ASD-related services. However, the majority of the parents shared instances of disappointment associated with denial of services as they interfaced with professionals who did not acknowledge their concerns. A number of parents demonstrated ongoing personal efficacy as they continued to pursue their goals, prepared individual education plans for their child, or collaborated with attorneys to ensure that their child’s needs were met. Parents’ resilience was also influenced by their pursuit of knowledge. For a few parents, knowledge was acquired to the extent that was needed to understand basic aspects of ASD and relevant resources. For the vast majority of mothers, the pursuit of knowledge became a quest to capture all that is ASD and to discover any treatment or service that could aid their child. A few mothers, like Tameka, had careers that served to enhance their knowledge. Tameka participated in the large focus group where she spoke about the benefits of being a teacher and its impact on her beliefs about her child’s future; as well as about the knowledge that kept her informed about her son’s outcome. Tameka stated:

“ He’ll be fine, will live and have a successful life just like anyone else. I have the benefit from having a bunch of children over my professional (teacher) years; everyone has something. Like we’ve been saying, in a classroom, you can probably have 20-30 IEPs. Just [be] savvy enough to get informed.”

Other mothers used knowledge to achieve an appropriate diagnosis. Lauren indicated that her knowledge was used to get a diagnosis for her daughter. She resigned from a stable position so that she could dedicate herself to the care of her two children, both of whom were eventually diagnosed with ASD. Lauren said: “I was able to really attend conferences, meetings, parent groups, to be able to educate myself. And I really saw that there were too many indicators and that’s why I really pushed so hard.”

Parents used the information they obtained to inform decisions regarding the types of services they pursued and how they went about receiving them. Natalie spoke about the knowledge she gained from readings published by a leading authority in the field of children with developmental disabilities. She shared this information with the large group of mothers: “Dr. Greenspan talks about social drives and cognitive development. So, especially when they are younger, we need to make sure they have those opportunities.” With this knowledge Natalie, pushed for her son to receive services that targeted social skills development. Although mothers primarily reported efforts to acquire knowledge and information, fathers likewise benefited from this resource. The fathers were well aware of their wives’ efforts. Ryan affectionately affirmed his wife’s quest for knowledge. Ryan said: “My wife, she just started doing research. And once she starts on some research, until she finds what she is trying to find, she is not gonna (sic) stop.” It was through his wife’s efforts that the couple was able to seek specific supports for their adolescent son. Even though the family was unable to get appropriate respite care for their son due to his behaviors, they continued to interview care providers to meet the needs of their family because of their knowledge.

Shared Support

Having support was another important factor for parents as they sought to acclimate to and remain resilient in the face of dealing with ASD. Despite the importance of appropriate relational support, most parents confirmed that their social interactions were compromised, declined, or became nonexistent once autism became a part of their world. Some parents attributed this decline to personal insecurities and to friends and family not being equipped to deal with autism. Some parents who experienced declines in social support were able to develop new relationships or hone in on available, though limited, supports. Parents who reported adequate support—attained in a variety of ways, such as ASD-related groups, family and spouses/co-parents, and even professionals—were encouraged as they experienced parental self-care and respite from caregiving. April explained how her social dynamic changed as a result of autism. She spoke about her efforts to cope with her disappointments with her family: I learned, too, to change my expectations of my in laws. I’ve been to therapy before; and once I learned that in therapy, I realized it was gold. Once you figure out how to do that, then that changes. You are not disappointed as much anymore. If they are not so supportive, then that’s just how they are.

Disappointments notwithstanding, she confided, “I have a few friends of course and family members too.” Her world, like that of some other mothers, became autism. This was evident as she stated: “As long as we are doing our thing, I’m fine. It’s our norm, our family; and [we] submerse ourselves in everything autism.” April eventually created a support group of other mothers who are also raising children with autism. She explained that she needed support: “I need[ed] it so bad because I was alone. The loneliness is awful in the beginning. I need[ed] to meet other parents like me. I needed it bad. Not parents with typical children.

Family support, when available, was invaluable for a variety of reasons, such as allowing parents personal time or even time to run errands. Support was also deemed to be important within the immediate family unit. In cases where parents reported having support from their spouse or their co-parenting partner, the benefits were clearly expressed. While parents noted the strain autism places on parental or couple relationships, having the support of another parent was valued. For example, Anita stated that even though her husband works, he is supportive in ways that she can appreciate: “My husband works full time, too, but so what.” She described how he makes smoothies for her in the morning. She said: “Those little things just make my day, like they put me in a good mood for the rest of the day. And you know, it’s almost like those little things mean so much.” She was careful to note that she reciprocates her husband’s care and support: “I make sure that I do the same for him. . . . If he’s in the shower, I’ll lay out his uniform or his clothes for the day.” She tried to make her husband “feel worth, too.

Limitations

The current study though focused on minority and economically disadvantaged parents was based on a small sample of parents, and findings may have been unique to these participants. That all parents demonstrated at least one protective characteristic may represent a type of parent who was willing to participate in a study that could be used to expand knowledge. Therefore, these findings may not be generalizable to other minority parents. Instead, the findings here can be used to support parents who do not possess the protective factors and help them to develop qualities needed to move beyond survival to a point where they and their families thrive in spite of ASD. Qualitative research has the benefits of producing data that are not biased by the opinions of the researcher and that are typically based on large samples from which findings can then be generalized to larger samples. However, despite the strengths inherent in qualitative inquiry, one notable shortcoming of this method is its limited ability to glean detailed information from the data sources. The qualitative methods used in this study allowed the researcher to capture an in-depth account of the experiences of underrepresented parents rearing a child with ASD, a perspective that might not have been reflected in a survey or questionnaire and one that has previously been underrepresented in the literature. Again, the methodology limits the extent to which the findings can be generalized to larger groups.

 

Recommendations

Expanding the current research to include the establishment of collaborative partnerships between health care providers, social workers, educators, community service providers, and the primary caregivers, would inform all parties on how to meet the general, as well as, individual specific needs of the child with autism and their primary caregivers. Also, the usefulness of existing resources as well as accessibility to those resources can be explored. Additionally, further inquiry should be conducted around the 5 themes and the 16 subthemes that emerged. For example, one theme that emerged from the data was the overall experience of the primary caregivers in raising a school-aged child with autism. Within this theme, one major subtheme surfaced—lack of information. When it is suspected a child may have a diagnosis of autism or when a diagnosis of autism is confirmed, a packet of information could be provided to the primary caregiver. Within this study, a gap in the provision of information packets was revealed, as five primary caregivers shared they received no packet at the point of the initial diagnosis. This packet would include, but would not just be limited to, information in laymen terms about the diagnosis, autism fact sheet (one page), next steps, provider information, basic information on treatment interventions, doctors or specialists in the area with the skillset to treat a child with autism, support group information, and other resources. Service providers would benefit from the outcomes of future research that will promote change in how services are delivered to the primary caregivers as well as the child with autism. As a considerable gap in literature exists on primary caregivers of school-aged children with autism, further research could bring about a full understanding of the experience the primary caregivers faced, while at the same show the study can be replicated