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

Abstract

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

Parent Experiences of Autism Spectrum Disorder Diagnosis: a Scoping Review

“…, (4) misdiagnosis or need for further referral extending wait times(Brookman-Frazee et al 2012;Lloyd et al 2019;Martinez et al 2018;Rabbitte et al 2017;Smith-Young et al 2020;Stahmer et al 2019;Upoma et al 2020), (5) parental denial(Chao et al 2018;Clasquin-Johnson and Clasquin-Johnson 2018;Crane et al 2018;Dababnah et al 2018;Hidalgo et al 2015;Pearson and Meadan 2018;Sakai et al 2019), (6) waitlist times for assessment(Lappe et al 2018;Legg and Tickle 2019;Raymond-…”

‘Yebo, it was a great relief’: How mothers experience their children’s autism diagnoses

“…Consistent with Lovelace et al’s ( 2018 ) findings, some mothers expressed relief to finally obtain a diagnosis after a frustrating, lengthy and stressful process because it gave a name for their child’s challenges, even though it failed to provide direction. It is also worth noting that all 12 mothers were dependent on the public health system, but the diagnosis process in the private health system is as lengthy because of a shortage of qualified personnel, and it is equally without direction (Clasquin-Johnson & Clasquin-Johnson 2018 ) but much more costly.…”

“…South Africa needs a systemic approach to autism diagnosis (Clasquin-Johnson & Clasquin-Johnson 2018 ), in which all the relevant stakeholders should be involved. This will ensure that mothers and their children derive the maximum benefit from autism interventions that respect religious and cultural diversity.…”

“…Autism diagnosis frequently occurs after a lengthy, costly and stressful process (Clasquin-Johnson & Clasquin-Johnson 2018 ). Upon confirmation of an autism diagnosis, mothers may experience a range of emotions including shock, guilt and relief (DePape & Lindsay 2015 ; Lopez et al 2018 ).…”

Prelims

“…They projected that these costs will reach $461 billion by 2025.These numbers are not unique to the United States. Internationally, autism is regarded as the most expensive disability (Byford et al, 2016;Clasquin & Clasquin, 2018;Hall, Wright, & Mills, 2016). In the United Kingdom, the total annual cost for children with ASD was found to be £2.7 billion ($4.3 billion US) while the costs for adults was £25 billion ($40.5 billion US) (Knapp, Romeo, & Becham, 2009).…”