1. Health Inequalities among Caregivers of Children with Autism
It is well documented that emotional distress experienced by caregivers of children with autism spectrum disorders (ASD) has been associated with poor health-related outcomes (Abbeduto et al., 2004; De Andrés-García, Moya-Albiol, & González-Bono, 2012). There is also extensive evidence that links a negative impact on health with socio-economic factors determined by ethnicity and race (Myers, 2009). Parents of lower socio-economic backgrounds, particularly African American caregivers, experience the combined stress of caring for a child with ASD and the negative health-related consequences associated with race and ethnicity. These combined stressors are further exacerbated by racial disparities that exist in access to health care for the child with ASD. For example, a White child is more likely to receive an ASD diagnosis four years earlier than a Black child is (Mandell et al., 2007). Moreover, a Black child is more likely to receive several diagnoses, such as conduct disorder, defiant behavior disorder, or attention-deficit disorder before given a diagnosis of ASD (Mandell et al., 2007). This delay in being properly diagnosed also causes a delay in access to early intensive behavioral intervention and other necessary services needed to address the child’s impairments. Children with a lack of early intervention exhibit worse autism symptom severity compared to children receiving services earlier. Further, autism severity and child disruptive behavior has shown direct links to parent emotional distress and negative psychophysiological outcomes (Davis & Carter, 2008). Although this intersection of race and parenting stress has the potential for negative consequences among caregivers, there has been limited autism research that includes participants of diverse socio-economic backgrounds. Increased recruitment and examination of research obstacles among this population might shed light upon these disparities.
2. Social Determinants of Health Inequalities among Caregivers of Children with Autism
Structural Factors: Education, Income, and Gender
Access to quality health care is one of the first factors to influence health for caregivers of children with ASD and their child. This access is often associated with parent education and income, which influences the provision of health insurance, quality of medical facilities and personnel, and the ability to communicate effectively with medical professionals. For example, a parent with a higher education is more likely to earn a higher income with job-related benefits of medical care from a private medical professional. Access to a consistent health care provider might offer the parent a secure and comfortable relationship to voice concerns about their child’s health. In addition, higher education might improve a parent’s ability to obtain pertinent information about their child’s development, thus, augmenting communication proficiency about the child’s deficiencies.
Seen through the lens of race, these interactions and access might significantly differ. Lower socioeconomic status might equate with lower wages, and access to only public insurance and medical facilities with very little consistency in healthcare providers. Lower income might also equate with lower education, which could limit a parent’s communication skills or confidence in speaking up about their child’s health concerns. Moreover, the element of race might permeate all of the aforementioned scenarios and influence access to quality healthcare regardless of income or education. A unifying factor that affects all caregivers of children with ASD is gender. A disproportionately high percentage of primary caregivers for children with ASD are female. Discrimination based on gender affects both Black and White women through limitations placed on income and job status.
Intermediary factors: Psychosocial Circumstances (depression)
Given the proven relationship between parenting a child with ASD and stress, maternal caregivers show a greater risk of depression and other mental health symptomology. The interconnected factors of income, education, and gender have the potential to negatively affect a caregiver’s psychological well-being. Systemic and institutional determinants of health might be a difficult target to attempt change. However, the individual level of caregiver mental health might be a promising place to intervene. Psychological outlook can be a modifiable variable, unlike race and ethnicity, education or income. Interventions seeking to improve mental health have been successful. Given the enormity and permanence of structural factors, choosing psychosocial circumstances provides an opportunity to influence health outcomes.