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

BACKGROUND: 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. OBJECTIVES: We aimed to give an academic insight into the state of autism education and care in South Africa as seen by...

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Autores principales: Clasquin-Johnson, Mary G., Clasquin-Johnson, Michel
Formato: Online Artículo Texto
Lenguaje:English
Publicado: AOSIS 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5913784/
https://www.ncbi.nlm.nih.gov/pubmed/29707517
http://dx.doi.org/10.4102/ajod.v7i0.356
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author Clasquin-Johnson, Mary G.
Clasquin-Johnson, Michel
author_facet Clasquin-Johnson, Mary G.
Clasquin-Johnson, Michel
author_sort Clasquin-Johnson, Mary G.
collection PubMed
description BACKGROUND: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
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spelling pubmed-59137842018-04-27 ‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism Clasquin-Johnson, Mary G. Clasquin-Johnson, Michel Afr J Disabil Original Research BACKGROUND: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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. AOSIS 2018-03-27 /pmc/articles/PMC5913784/ /pubmed/29707517 http://dx.doi.org/10.4102/ajod.v7i0.356 Text en © 2018. The Authors https://creativecommons.org/licenses/by/4.0/ Licensee: AOSIS. This work is licensed under the Creative Commons Attribution License.
spellingShingle Original Research
Clasquin-Johnson, Mary G.
Clasquin-Johnson, Michel
‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism
title ‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism
title_full ‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism
title_fullStr ‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism
title_full_unstemmed ‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism
title_short ‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism
title_sort ‘how deep are your pockets?’ autoethnographic reflections on the cost of raising a child with autism
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5913784/
https://www.ncbi.nlm.nih.gov/pubmed/29707517
http://dx.doi.org/10.4102/ajod.v7i0.356
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