Translational Studies for Inclusive SocietyStress Experienced by Parents of Children with Autism: The case of the United States
Introduction
A lot of research has been conducted in developed countries such as Japan and the U.S. concerning the stress experienced by parents of children with autism. It has been said that the stress experienced by parents of children with autism is much higher than that for parents of children with other disabilities and for parents of children without a disability. In fact researchers have shown that two out of three mothers of children with autism have extremely high levels of stress requiring intervention (Tomanik et al., 2004).
The author is the mother of a 19 year old child with autism. She is married to a US citizen and gave birth and raised children in both Japan and the U.S., This background provided the background and interest for her to conducted research comparing childrearing in these two countries. Cross-cultural psychological research on children with developmental disabilities and their families are still limited, and therefore, for the past two years she has been conducting research on the parents of children with autism from a cross-cultural perspective while working as a visiting scholar in an autism clinic at the University of Texas Medical School, Houston. She has been collaborating on this research project with Dr. Katherine Loveland who is an internationally well-known autism researcher and clinician. More recently, she has been conducting a research project as a Social Science Research Council Abe Fellow and collecting the data from Japanese mothers of children with autism as a visiting scholar in the Institute of Human Sciences at Ritusmiekan University. In this paper she discusses the factors associated with the stress experienced by U.S. parents of children with autism – financial factors and social stigma, which appear to not be well-known in Japan.
Economic Factor
According to a recently published research, the total costs incurred over the lifetime of a person with autism ranged from approximately $1,400,000 (high-functioning autism) to 2,400,000 (low-functioning autism) (Beuscher et al., 2014). This apparently includes not only support costs such as medical, education, and institutionalization fees, but also the cost of sacrifices made by caregivers in their working lives in order to take care of their children with autism (e.g., parents leaving their job to look after their children).
From a Japanese perspective, medical cost in the U.S is extraordinarily high, and the U.S. health insurance system is very complicated. Caution is required because there are significant differences in the price and coverage of insurance depending on your employer. In addition, insurance policies may change from one year to the next. In the case of one U.S. mother I interviewed, for example, the cost of speech therapy, which had been covered by her family’s health insurance. Then one year suddenly the insurance company rejected it. Because the family was not aware of the policy change, they were billed for a very large amount of money. When it comes to the most well-known autism therapy, applied behavior analysis (ABA), the extent to which it is covered by insurance differs depending on the State and the age of the child (Autism Speaks, 2015). For example, the mother of a three-year-old child diagnosed with a pervasive developmental disorder told me during her interview that she pays around $2,000 per month for her child to receive 20 hours per week of ABA therapy. This is a result of the fact that the insurance in which she is enrolled does not pay for the cost of this treatment.
This economic burden is a major problem within U.S. families. When financial difficulties accumulate, families of children with autism express, such as “My husband and I often do not eat lunch or dinner because we have no money left to buy food for ourselves”; “Used up all our equity in our home and … most of our retirement funds saved since we were married [in] 1984”; and “[We’re facing] bankruptcy due to mounting medical bills not only involving our child but stress induced illness and physical problems for parents” (Sharp & Baker, 2007, p. 259). In particular, the difficulty of parental employment for mothers of children with autism has often been reported. According to a study conducted in the U.S., the annual income of mothers children with autism was 35% ($7,189) less than that of mothers of children with another health limitation, and 56% ($14,755) less than that of mothers of children with no health limitation (Cidav et al., 2012).
Social Stigma
In general, the U.S. is thought to be open and understanding when it comes to people with disabilities, but this is not always the case. In particular, people with autism and their families are susceptible to feelings of social stigma (Hinshaw & Cicchetti 2001). Responding to an ongoing informal survey by the Interactive Autism Network (IAN), known as America’s leading autism research network, close to 90% of those surveyed replied “many times” or “sometimes” to the question “Have you felt stigmatized because of autism?” (https://iancommunity.org/node/13746/results) “Stigma” means a negative label imposed on an individual by other people or social groups. This phenomenon is also described using terms like “humiliation”, “prejudice” and “discrimination.” This stigma is said be connected to the fact that, unlike many other disabilities, autism is an “invisible” disability that arises in children whose outward appearance hardly differs from that of a child without disabilities (Sousa, 2011). Because autism has various characteristics, its behaviors are misunderstood or are viewed in terms of stereotypical conceptions by those who are lacking in knowledge or do not have a correct understanding of this disability. For parents, it is not uncommon for the problem behaviors of children with autism to be blamed on their parenting.
A few years ago, YouTube videos like the one shown below were passed around on social media by U.S. parents of children with autism. It is an episode of the ABC hidden camera show “What would you do?” featuring a scenario in which a child with autism and his family go out to eat. By the way, this video can also be found on the website of Autism Speaks, the largest autism awareness group in America. https://www.youtube.com/watch?v=gsfnZVaAT5Q In the scene, a fourteen-year-old boy with autism goes to a restaurant with his family. He displays the fixation and hyperactivity which is often seen in children with autism, and subsequently, it triggers the anger for one of the customers. The boy with autism, his family, and the customer who criticizes his behavior are all actors playing their parts. As it turns out, most of the other customers show sympathy for the boy and his family and criticize the angry customer. This has been seen as an indication for rising awareness and understanding of autism in the U.S. The fact that this kind of scenario created in such a TV show, however, demonstrates that there are cases in which people with autism and their families do indeed experience social stigma. What sort of response would be seen if a similar hidden camera show were made in Japan?
Conclusions
This spring, a Houston television station interviewed member(s) of our research team. The TV station just learned about an article (Diament, 2009) stating that the families of children with autism often experience levels of stress similar to those of combat soldiers, and wanted to ask experts about the stress experienced by these families. When this news story was published on the Internet, several comments were posted by people with autism and their families concerned about negative reporting on their experience.
While most mothers of children with autism indicate extremely high levels of stress that require intervention, for those with autism, this is indeed a very sensitive topic of research. Opinions and experiences vary among people with autism and their families, which are strongly influenced by the social systems, norms, and values of the communities in which they live. I hope that conducting research that pays close attention to culture in this sense can clarify things we have taken to be self-evident, and lead us one step closer to unveiling the kind of support that these individuals and families need.
References
- Autism Speaks (2015). State initiatives. Retrieved from https://www.autismspeaks.org/state-initiatives-Buescher, A. V. S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). -Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics, 168(8):721-8. doi:10.1001/jamapediatrics.
- Cidav, Z., Marcus, S. C., & Mandel, D.S. (2012). Implications of childhood autism for parental employment and earnings Pediatrics, 129(4), 617-623.
- Diament, M. (2009). Autism moms have stress similar to combat soldiers. Disability Scoop. Retrieved from http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/-Hinshaw, S. P., & Cicchetti, D. (2000). Stigma and mental disorder: Conceptions of illness, public attitudes, personal disclosure, and social policy. Development and Psychopathology, 12(4), 555-598. doi:10.1017/S0954579400004028
- Sousa, A. C. (2011). From Refrigerator Mothers to Warrior-Heroes: The cultural identity transformation of mothers raising children with intellectual disabilities, Symbolic Interaction, 34(2), 220–243. doi:10.1525/si.2011.34.2.220.
- Suzumura, S. (2012). Parenting stress in mothers of preschoolers with Pervasive Developmental Disorders: Impact of children’s cognitive level on maternal distress. Clinical Psychiatry, 54 (11), 1135-1143.
- Tomanik, S., Harris, G. E., & Hawkins, J. (2004). The relationship between behaviours exhibited by children with autism and maternal stress. Journal of Intellectual and Developmental Disability, 29(1), 16–26. doi:10.1080/13668250410001662892
Related projects
- Translational Studies for Inclusive Society Theme 3: Research on Escorted Support for Inclusive Society Families/children with developmental disabilities project
