Parental Perspectives on Early Intensive Intervention for Children Diagnosed with Autistic Spectrum Disorder

Abstract

Previous research on early intensive intervention in autistic spectrum disorder (ASD) has largely focused on outcomes of treatment for children. Although some account has been taken of parental viewpoints, the potential impact of intervention on families has not achieved the same kind of research prominence. This contrasts with the considerable literature that exists exploring the experiences of parents of children with a wide range of special needs and disabilities. This article reports data from a Local Education Authority (LEA)-funded research commission designed to inform future policy and service provision. Themes are extracted from interview transcripts and questionnaire responses to reflect the views of 15 families, including nine whose children were receiving an LEA pilot intervention programme for ASD, and six who were managing their own interventions based on Applied Behavioural Analysis (ABA). Implications are drawn for future service delivery in support of key principles for early intervention for all families of young children with developmental disabilities.

An exploratory study of family‐centred help‐giving practices in early intervention: families of young children with autism spectrum disorder

“…Challenges included arguments over which intervention style is most effective (Beals 2004), difficulty working with educational authority and disruption of privacy and family routines (Grindle et al 2009). Families have expressed (i) frustration with service providers who were disorganized, unknowledgeable and unreliable (Grindle et al 2009;Grygas-Coogle et al 2013); and (ii) concerns related to uncertainty of expectations, difficulty in relating to interventionists, the time it takes to organize intervention and service delivery transitions (Webster et al 2004). However, when providers use relational and participatory practices (as documented in this study), families of young children at risk for ASD have interventionists they trust and with whom they can communicate effectively.…”

“…However, not all families of young children with ASD are satisfied with EI services (Webster et al 2004;Rodger et al 2008;Grindle et al 2009;Patterson & Smith 2011;Grygas-Coogle et al 2013). Negative experiences have been related to interpersonal difficulties with professionals, the negative impact of EI on family relationships, and an increase in stress resulting from EI.…”

“…However, not all families of young children with ASD are satisfied with EI services (Webster et al . ; Rodger et al . ; Grindle et al .…”

Desenvolvimento e adaptabilidade de pessoas com transtorno autista na perspectiva evolucionista

“…Através de uma abordagem relacionada ao desenvolvimento humano, tendem a privilegiar os domínios da interação e comunicação social, bem como funções sensório-regulatórias 17 . Além disso, a detecção de crianças em tão tenra idade com risco de autismo possibilita intervenção precoce, pela compreensão dos desvios do desenvolvimento em relação ao desenvolvimento típico 18,19 , permitindo que essas crianças aprendam habilidades que lhes faltam e, portanto, melhorem condições de interação social e qualidade de vida delas e das pessoas com quem convivem.…”

Investigating the social engagement of children with autism in mainstream schools for the purpose of identifying learning targets

“…Autism education has tended to focus on the development of the individual child, but a persistent issue in this is trying to separate out the individual from this rich and complex social background (Kasari, Locke and Gulsrud et al., ). The usefulness of such an approach, indeed, is itself questionable because children's social‐emotional learning is based on dyadic experiences and group processes, and cannot be viewed as individual behaviour alone (Webster, Feiler and Webster et al., ). Practitioners are expected to identify clear learning targets and, in some cases, directly teach social skills and facilitate capacities for friendship and play, but in doing this, a constant difficulty is being specific about the nature of a child's social‐emotional needs (Ruble, McGrew and Dalrymple et al., ), for example, how his autism manifests itself within a particular setting, and how other children view him and receive his communication.…”