The paper under study attempted to understand the influence of culture on the experiences of parents with autistic children hailing from Southern Asia countries such as India, Pakistan, Nepal, Bhutan, Maldives, Bangladesh, and Sri Lanka. The authors defined ‘culture’ as a framework that consisted of shared beliefs, aim, and attitudes. The study had an explicit section for the review of the literature. The past literature suggested that culture influences the perception of disability and that research pertaining to this idea is scarce (Theara & Abbott, 2015). Accordingly, the authors had reviewed only 12 such studies that contributed to the topic under study.
The literature pointed to the fact that parents caring for a disabled child viewed the disability as an ill fate with no hope for a bright future. Similarly, the presence of disabilities associated with learning is three-fold higher in children of South Asian descent in the UK and yet, only very few parents sought any treatment to manage such a disability. Existing literature on autism in the UK is dominated by White-perspective, which does not account for the needs of the non-White minority groups. There have been no past studies specifically focusing on non-White parents with an autistic child. This lack of research on experiences and needs of minority groups has been emphasized by 4 different authors in the literature review (Theara & Abbott, 2015).
Method
For recruitment of participants, professionals such as educational psychologists, specialist teachers, and area SENCO’s, who worked with parents of autistic children, were approached. They were provided with an information sheet and consent forms to be passed on to South Asian parents who wished to be part of the study. Nine parents (five mothers and two sets of both the parents) consented to be part of the study. The sample group consisted of two parents born and raised in the UK and the rest hailing from countries such as Pakistan, India, and Sri Lanka. There were no tabular columns indicating the exact composition of the sample group. There were no explicit inclusion or exclusion criteria mentioned in the paper (Theara & Abbott, 2015).
The study was undertaken as part of a doctoral research project at the University of Bristol, located in the southeast of England. The authors had an elaborate section on the development process and premise of this study. The idea for this research stemmed from the fact that South Asian parents showed certain differences in attitude in response to their child’s autism diagnosis. In addition to the cultural stigma surrounding autism, many parents were unaware of how to deal with the situation, how to present the same to their families and if there were ways to sought professional help. One of the authors mentioned that being of South Asian descent helped in paving the way for this research (Theara & Abbott, 2015).
The research design used was grounded theory approach. Grounded theory is a qualitative research methodology that is often used in social justice inquiries. The process commences with inductive logic, comparative inquiry and uses emergent strategies. The iterative process of data collection and analysis, which reciprocally help each other in shaping the data, is a characteristic feature of grounded theory (Denzin & Lincoln, 2011). Accordingly, in the study, the researchers conducted a discussion on the topic with the parents at their home in English language mode. The interviews lasted for an average of 70 minutes and, the authors used those recordings to create a questionnaire to refine the experiment (Theara & Abbott, 2015). In grounded theory, the analytical procedure tries to establish a relationship between the themes and concepts across interviews by using a process of continual comparative analysis (Lal, Suto & Ungar, 2012). The researchers used this step to develop a theoretical framework.
The purpose of grounded theory is to help the researchers in understanding the implicit meanings within the collected data. That is, often in theoretical sampling that uses interviews, the answers given by the subjects are not direct and often have hidden reactions and thoughts (Lal et al., 2012). For example, in this study, the researchers interviewed the participants and had to go over line by line to extract specific repetitive keywords that defined their attitude towards autism. The iterative process helped generate memo’s and helped understand what was being discovered through this process (Theara & Abbott, 2015). The researchers mentioned that the study required a social constructive lens; constructivist ground theory assumes that people shape the phenomenon that is being studied while also influencing the process through their actions (Denzin & Lincoln, 2011). In this study, the constructivist theory applies to the people whose perspective of autism is influenced by the cultural constraints, and their actions based on these perspective shapes the future of the phenomenon.
Although the dependent and independent variables have not been mentioned explicitly in the paper, it can be assumed that ‘cultural influence’ is the independent variable while the experience of South Asian parents is the dependent variable. Since the experimental design aimed merely to observe and understand the variables in their natural state without any external manipulation, the design could be assumed as being correlational in nature (Powers & Knapp, 2011), where the researchers aimed at understanding the relationship between culture and its influence on perception of disability (Theara & Abbott, 2015).
Confounds and ethical issues
The majority of the participants were mothers, which could have been a confounding variable and impeded the generalization of the findings. The level of acculturation among the participants could have too contributed to confounding results. Additionally, all the participants had autistic sons and all the participants were from the same small geographical region, both of which could have introduced bias. The bias and confounders could have been avoided if the selection process had been more stringent with proper selection and rejection criteria and widespread. One of the researchers was of the same ethnicity as some of the participants, which could have introduced bias during interpretation of the interviews. To ensure the protection of the interests of the participants, proper ethical approval was obtained from University of Bristol Ethics Committee (Theara & Abbott, 2015).
Results
The results showed that the parents viewed autism through a medical model perspective, wherein they understood autism as a condition that was diagnosed by a medical practitioner and that it required treatment and management. The parents hoped that autism would be cured one day. The researchers were able to identify that the parents did not have any external input from any non-medical professional regarding autism education and management. Many parents disregarded the label of autism due to the spectral nature of the disorder and wanted to hide the disability from the public (Theara & Abbott, 2015). The results revealed a recurrent theme of self-help.
The parents narrated that ‘back home’ there were no support system or public sector services to guide the parents of children with autism and that the family had to ‘deal with it’ and keep the disability hidden. As a result, the disability could not be addressed via any public sector service and the parents did not expect to receive any such help outside the medical professional’s office and, thus, tended to empower themselves with knowledge through research to understand the disability and help their child. Most of the parents said they felt isolated due to their child’s disability. The results indicated that the authors were able to achieve the goals they had set for this study.
Discussion
These results fill in the some of the gaps that were pointed out by past literature, such as the need to gain more insight regarding autism within the non-White minority groups using intersectionality and socio-cultural theories for disability research, understanding cultural influence on disability perspective and drawing definitive conclusions regarding the difference in perspective of South Asian parents. The authors were able to fit the results to a certain specified model but acknowledged the fact that the data were interpreted in a subjective manner, which could have introduced bias.
According to the authors, the results could be practically implemented to improve the way the professionals, who provide help for autism, work with the parents. They suggested that educational psychologists would be one of the significant professionals who could make a difference. This implication would be correct since the parents had previously mentioned that the idea of working with a psychologist felt more comfortable. Accordingly, these findings shed light on the definitive perspective the parents used to view autism (Theara & Abbott, 2015).
The study could have been executed better had it used a larger sample size with diverse populations from different South Asian countries residing in different boroughs within England. According to Lal et al. (2012), since grounded theory is a theoretical sampling, it is not possible to determine a reasonable sample size; however, studies show that a sample size consisting of 10 to 60 participants would be a good sample size to draw effective observations. The current study used only 9 participants, which was not a representative sample population. There were no representative populations from Bangladesh, Nepal, Maldives and Bhutan. Due to these flaws, it would be impossible to generalize the findings that the South Asian parents only use medical model perspective.
For future research, the authors suggest that the idea of intersectionality must be explored further in the context of disability to better understand and help minority families. Although currently intersectionality is being used in terms of feminism, the authors proved that intersectionality can also be used for theoretical analysis of ideas of different sects of populations.
References
Denzin, N. K., & Lincoln, Y. S. (2011). The Sage handbook of qualitative research (4th ed.). Thousand Oaks: Sage.
Lal, S., Suto, M., & Ungar, M. (2012). Examining the potential of combining the methods of grounded theory and narrative inquiry: A comparative analysis. The Qualitative Report, 17(21), 1.
McGoldrick, M., Giordano, J., & Garcia-Preto, N. (2005). Ethnicity & family therapy (3rd ed.). New York: Guilford Press.
Powers, B. A., & Knapp, T. R. (2011). Dictionary of nursing theory and research (4th ed.). New York, NY: Springer Pub.
Theara, G., & Abbott, D. (2015). Understanding the experiences of South Asian parents who have a child with autism. Educational & Child Psychology, 31(2), 47-56.
