FOCUS ON PRACTICE: Living with children diagnosed with autistic spectrum disorder: parental and professional views

Abstract

The number of children diagnosed with an autistic spectrum disorder (ASD) is rising and is now thought to be as high as 1:100. While the debate about best treatment continues, the effects of having a child diagnosed with ASD on family life remain relatively unexplored. This article, by Karola Dillenburger of Queens University Belfast, Mickey Keenan of the University of Ulster, Alvin Doherty from the Health Service Executive Western Region, Tony Byrne of Parents' Education as Autism Therapists (PEAT) and Stephen Gallagher of the University of Ulster, sets out to adjust that balance. Drawing upon data from a comprehensive study of parental needs, these authors argue that parental and professional views do not always concur; that families make extraordinary sacrifices; that siblings are affected; and that parents are under tremendous stress. Parents argue that educational and social service supports are not efficient and that they are forced to rely largely on support from within the family or from friends. In particular, some important differences between parental and professional perceptions became apparent in relation to interventions based on Applied Behaviour Analysis (ABA). The authors of this article propose that these differences need to be taken seriously by teachers and other professionals as well as by policy-makers.

Parents' experiences of applied behaviour analysis (ABA)‐based interventions for children diagnosed with autistic spectrum disorder

“…Families and children with ASD need and deserve the best treatment that is evidence‐based (Morris, ). Yet many parents in the study reported here were dissuaded from using ABA‐based interventions by professionals who evidently were not as well informed as parents (Dillenburger, Keenan, Doherty, Byrne & Gallagher, ). The expense of privately funded home‐based ABA interventions was a problem.…”

Creating an Inclusive Society… How Close are We in Relation to Autism Spectrum Disorder? A General Population Survey

“…This positive pro‐active public attitude is supported by parents' experiences (Lamb ; Dillenburger et al . , ) and scientific evidence (Helt et al ., 2013).…”

Oti̇zm Spektrum Bozukluğu Tanili Çocuk Sahi̇bi̇ Anneleri̇n Deneyi̇mleri̇

“…Bazı araştırma bulgularında ise, bu yeni ve zor durumun evlilikleri güçlendirdiği; aile bireylerine daha duyarlı ve sabırlı olma, hayata daha geniş perspektiften bakma gibi olumlu deneyimler ve kişisel kazançlar kattığı; yaşam için önemli bir amaç kazandırarak aile bireylerini güçlendirdiği ve tüm zorluklara rağmen çocuklarıyla ilgilenmenin ebeveynleri mutlu ettiği bildirilmektedir (Chang Yaz-2014 Cilt:13 Sayı:50 (96-111) www.esosder.org Summer-2014 Volume:13 Issue:50 98 ve McConkey, 2008;Gupta ve Singhal, 2004;Kenneth, Hodgson, McCammon ve Lamson, 2009;Üstüner Top, 2009). Bunların dışında bazı araştırma bulguları da; (a) ebeveynlerin psikolojik durumları üzerinde çeşitli değişkenlerin (örneğin, çocuktaki davranış sorunlarının yoğunluğu, ebeveynlerin kişiliği) etkili olduğunu (Dillenburger et al, 2010;Gupta ve Singhal, 2004;Gray, 2002) Yaz-2014 Cilt:13 Sayı:50 (96-111) www.esosder.org Summer-2014 Volume: …”