Research Article: ‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism

Date Published: March 27, 2018

Publisher: AOSIS

Author(s): Mary G. Clasquin-Johnson, Michel Clasquin-Johnson.

http://doi.org/10.4102/ajod.v7i0.356

Abstract

In this article, we reflected on our experience of the cost of parenting a child with autism, including our ongoing search for educational and therapeutic intervention.

We aimed to give an academic insight into the state of autism education and care in South Africa as seen by us, with special attention to its cost and sustainability.

Using evocative autoethnography as storied scholarship together with critical autism studies, we reflected on stories of the past 5 years since our son’s diagnosis.

Our experiences agree with international studies that establish autism as the most expensive disability. In addition to the high costs of diagnosis, existing intervention and support approaches are unaffordable for the majority of South Africans. We recommend that teachers should be trained to participate in early screening and diagnosis, as well as co-therapists, to strengthen the implementation of inclusive education.

The kind of autism intervention currently offered in South Africa is financially and socially unsustainable. Instead of positioning autism as an individual or family dilemma, it should be addressed as an educational and societal issue. Future research should explore cost-effective options for a developing country context, while promoting best practice within inclusive settings.

Partial Text

In this article, we reflect on our lived experience of parenting a child with autism, specifically our search for educational and therapeutic intervention. We share stories of critical moments in our journey using qualitative inquiry and evocative autoethnography. Each could be an article in its own right, and may yet become that, but here we focus on the financial aspect. Drawing on a critical autism studies perspective (Davidson & Orsini 2013), we reflect on the cost of raising our child. We soon discovered that autism is positioned as the most expensive disability for which parents need impossibly deep pockets. This is known to be true internationally (Cidav et al. 2013; Dillenburger, McKerr & Jordan 2014; Fletcher, Markoulakis & Bryden 2012; Horlin et al. 2014; Lin 2014), but what is the case in South Africa?

This qualitative inquiry combines evocative autoethnography (Boylorn & Orbe 2014; Pace 2012:7) and self-reflexivity (Anderson 2006:374, Humphreys 2005:841) to reflect our insider perspective by using ourselves as the research subjects (Ellis 2014:61). We reflect on our experiences (Morella 2008; Prince 2013:319) of the past 6 years and connect it to existing scholarship (Britton 2013:iv). We employ autoethnography as a scientific method to unpack our epistemology (Ellis 2014:50), advance social justice (Morella, 2008) and provide an insight into the cost of autism diagnosis, education and support in South Africa. We also hope that it will be of benefit to parents following a similar process (Hannekom 2012:iii), in accordance with Hemelsoet’s (2014:227) assertion that social scientists should ‘take up their responsibility by turning their scientific knowledge into a vivid leverage of discussion, action and change in the public arena’.

Ethical clearance for this report was sought and obtained from the Ethics Committee at the College of Education at the University of South Africa (REF: 2016/08/17/1130536/09/MC). The names of the institutions, organisations or individuals are not mentioned in relation to our experiences.

South Africa is a signatory to a number of international conventions and its internal policies promote the concept of inclusion. It therefore cannot leave the education of its citizens with autism to the private sector, where only the privileged few will benefit. Nor can it be left to the initiative of an individual family. From the perspective of Critical Autism Studies, we need the joint involvement of the medical and educational establishments backed by the state. Education is about transformation, about optimising the abilities of all learners, including those with autism.

 

Source:

http://doi.org/10.4102/ajod.v7i0.356

 

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