The Role of The Family System in the Education of Children with Autism: Matriarchal leadership by default?

Author(s):

Carol-Ann O'Siorain(presenting / submitting)

Conference:

ECER 2016

Network:

04. Inclusive Education

Format:

Paper

Session Information

04 SES 03 B, Social Stratificaton and Inclusion

Paper Session

Time:

2016-08-23

17:15-18:45

Room:

OB-H0.12

Chair:

Donatella Camedda

Contribution

It is well researched that children begin learning literacy and becoming literate from ‘womb to tomb’ (Alexander, 2006) as they engage in systems of ‘communication and representation’ (Wyse, Jones, Bradford, & Wolpert, 2013). This places significant importance on the role of family relationships, literacy and resourcefulness in the lives of children in early years and primary education. Children with autism characteristically present with difficulties in social relationship, communication and restricted, repetitive, stereotypical behaviours that place barriers to typical literacy development (Volkmar & Pauls, 2003).

This paper seeks to explore the voices of mothers in the literacy education of their children with autism. A thesis is presented that places mothers, by default, in a role as a matriarchal leader of their child’s education. It argues that ‘horizontal and vertical stressors (crises)’ (Carter & McGoldrick, 2005) within the family system shifts the weight of parental responsibilities on to the maternal figure during the early years of childhood. This discussion arises from emerging research findings of a broader qualitative study of the literacy development of children with autism in an Irish context. The study acknowledges the literature on the debate of the changes to the ‘whole fatherhood experience’ on the diagnosis of a child with a disability (Dardas & Ahmad, 2015; Donaldson, Elder, Self, & Christie, 2011; Ericzon, Frazee, & Stahmer, 2005)and does not suggest the abdication of fraternal duties. It does however present the narratives of mothers on the impact of a diagnosis of autism on the family dynamic and structure.

Like many countries internationally, family participation is highly valued within the Irish education system and is reflected within the constitution. Article 42 of the Irish constitution communicates the law on education, in particular, it ‘acknowledges that the primary and natural educator of the child is the Family’ ("Bunreacht Na hÉireann," 2012 (Lúnasa)). The Irish education system emphasises the importance of building a culture of valuing parental voice in the delivery of education (Ireland, 1998) and especially the participation of parents of children with special and additional needs (Ireland, 2000, 2004). The rhetoric of parent lead leadership in education is well placed, however the realities of the challenges faced by parents of children with autism highlights the need for a system wide response to support mothers of children with autism as leaders in families’ literacy.

Method

This qualitative research pursues ‘connections between lived experiences, social injustices, larger social and cultural structures, and the here and now’ (Denzin & Lincoln, 2013, p. 43). (Merriam, 1998) affirms qualitative research as research that looks at how all elements work together to create a ‘whole’ and notes that the analysis ‘strives for depth of understanding’. Literacy in context requires that families are included in seeking the reality of literacy for pupils with autism. A relativist ontological position within this research is that reality is constructed through reflection, meaning and understanding from social and cultural experiences. A social constructionist paradigm provides the theoretical perspectives guiding the exploration of the phenomenon of ‘literacy’ for pupils with autism. Constructionism provides ‘multiple realities’ by engaging in conscious construction of meaning. In a social constructionists view the realities of literacy are dependent on the knowledge of, engagement with and interpretation of literacy by people involved within the literate environment of the child and the ‘hold our culture has on us’ (Crotty, 1998, p. 58; Silverman, 2013). From the review of the empirical literature into literacy and ASD it is evident that there remains insufficient data to generate an understanding of how literacy is supported for pupils with Autism in an Irish context. Engaging in ethical research requires the researcher to be consciously active in maintaining professional codes of behaviour such as respect, care, integrity and trust. The researcher sought the voices of parents through a semi-structured interview schedule, in a ‘safe environment’, relating to their family literacy practices while supporting a child with autism. 35 sets of parents, of pupil participants involved in the study, were invited to be interviewed of these, 26 mothers and 1 fathers presented for single interviews and 2 sets of parents presented for joint interviews. The interviews were then transcribed and a ‘voice-centered relational model’ and a ‘listening guide’ method to the analysis of the empirical materials generated (Gilligan, Spencer, Weinberg, & Bertsch, 2006; Mauthner & Doucet, 2003; Ribbens & Edwards, 1998) were applied. Methodologically, this enables the researcher to identify with the emotional, social, professional and intellectual reactions and to enable the researcher to be visible within the researcher Gilligan et al. (2006). Analysis of the parent interviews is presented in narrative form and presents an emic perspective of literacy and autism.

Expected Outcomes

This paper will provide a discussion platform for education and policy makers from an international perspective. In particular it calls for more intense research on family literacy for families with members identified as being on the autism spectrum. It will identify areas for focus in the context of literacy learning for pupils with autism. The emerging finding provides evidence to support literacy development through a ‘whole’ child perspective and argues for a substantial improvement in supporting parents as leaders of literacy. Attention is drawn to the seriousness of stresses that families experience and how these stresses impact on their functional relationships.

References

Alexander, P. A. (2006). The path to competence: A life span developmental perspective on reading. Journal of Literacy Research, 37, 413-436. Bunreacht Na hÉireann, Government of Ireland (Ireland 2012 (Lúnasa) 1937). Carter, B., & McGoldrick, M. (Eds.). (2005). The Expanded Family Life Cycle: Individual, family and social perspectives (3rd ed.). New York: Pearson. Crotty, M. (1998). The Foundations of Social Research. London: Sage Publication. Dardas, L., A, & Ahmad, M., M. (2015). For fathers raising children with autism, do coping strategies mediate or moderate the relationship between parenting and quality of life? Research in Developmental Disabilities, 36, 620-629. Denzin, N. K., & Lincoln, Y. S. (2013). Strategies of Qualitative Inquiry (4th ed.). Thousand Oaks, California: Sage Publication. Donaldson, S., Elder, J., Self, E., & Christie, M. (2011). Father's preceptions of theirroles during in-home training for children with autism. Journal of Child and Adolescent Psychiatric Nursing, 24(4), 200-2007. Ericzon, M., Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Preactice for Persons with Severe Disability, 30(4), 194-204. Gilligan, C., Spencer, R., Weinberg, M. K., & Bertsch, T. (2006). On The Listening Guide. In N. Hesse-Biber & P. Leavy (Eds.), Emergent Methods in Social Research. London: Sage Publications. The Education Act, (1998). The Education (Welfare) Act (2000). Education for Persons with Special Educational Needs Act, EPSEN Act, (2004). Mauthner, S. N., & Doucet, A. (2003). Reflexive accounts and accounts of reflexivity in qualitative data analysis. Sociology, 37(3), 413-431. Merriam, S. (1998). Qualitative Research and Case Study Application in Education. San Francisco: Jossey-Bass Education Series. Ribbens, J., & Edwards, R. (1998). Feminist Dilemmas in Qualitative Research: Public Knowledge and Private Lives. London: Sage Publications. Silverman, D. (2013). Doing Qualitative Research (4th ed.). London: Sage Volkmar, F., R, & Pauls, D. (2003). Autism. The Lancet, 362(October 4), 1133-1141. Wyse, D., Jones, R., Bradford, H., & Wolpert, M. A. (2013). Teaching English, Language and Literacy (3rd ed.). London: Routledge Taylor Francis Group.

Author Information

Carol-Ann O'Siorain (presenting / submitting)

Trinity College, Dublin

School of Education

Dublin

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