‘Above and beyond’: The perceptions of mothers of children with autism about ‘good practice’ by professionals and services

Stanford, Catherine; Totsika, Vasiliki; Hastings, Richard P.

doi:10.1016/j.rasd.2020.101615

Cited by 12 publications

(12 citation statements)

References 32 publications

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“…The current findings corroborate with findings from other studies emphasizing the need for competence among preschool staff and in-depth knowledge and skills among supervisors (Ala’i-Rosales et al, 2010 ; Eikeseth et al, 2012 ; Guldberg et al, 2011 ; Kendall et al, 2013 ; Leaf et al, 2016 ; Scheuermann et al, 2003 ; Stanford et al, 2020 ) which maps onto points identified in staff’s competence such as knowledge, skills, education and experience. Previous research has also identified the need for close collaboration between preschool and parents to promote intra-professional collaboration (Fallon & Zhang, 2013 ; Guldberg et al, 2011 ), and the importance of making adjustments in the social and physical environment and processes of care (CAST, 2008 ; Kendall et al, 2013 ; Krieger et al, 2018 ; Odom et al, 2013 , 2018 ; Piller & Pfeiffer, 2016 ) also maps onto themes of collaboration, and learning environment.…”

Section: Discussionsupporting

confidence: 91%

From Someone Who May Cause Trouble to Someone You Can Play With: Stakeholders' Perspectives on Preschool Program Quality for Autistic Children

Bejnö

Bölte

Linder

et al. 2021

J Autism Dev Disord

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In Sweden, young autistic children typically attend community-based preschool programs, which may not be adapted to their needs. In the current study, stakeholders to autistic children receiving Early Intensive Behavioral Intervention were interviewed following a quasi-randomized study (#NCT03634761) aimed at improving the preschool program quality using the Swedish version of the Autism Program Environment Rating Scale (APERS). Stakeholders provided their perceptions and experiences concerning key factors for high quality preschool programs as well as well as their experiences of the abovementioned APERS study. Applying thematic analysis, stakeholder groups differed in what they emphasized, but all highlighted staff’s competence, children’s inclusion and participation, collaboration, and the learning environment as key program areas that had been positively influenced by the APERS-based intervention.

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Section: Discussionsupporting

confidence: 91%

From Someone Who May Cause Trouble to Someone You Can Play With: Stakeholders' Perspectives on Preschool Program Quality for Autistic Children

Bejnö

Bölte

Linder

et al. 2021

J Autism Dev Disord

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“…Communication barriers were prominent across the research evidence reviewed and had a detrimental impact on the process of access to EI, especially with regard to professionals' responses to parental concerns. There is also emerging evidence that getting communication right is crucial to parents feeling that they are getting 'good' support (Stanford et al, 2020). As parents were usually the first to recognise developmental delays (and were generally right in their assessment, e.g., Bellman et al, 2013), ensuring professionals respond effectively to parental concerns is key to facilitating timely identification and access to EI.…”

Section: Sapiets Et Almentioning

confidence: 99%

Factors influencing access to early intervention for families of children with developmental disabilities: A narrative review

Sapiets

Totsika

Hastings

2020

Research Intellect Disabil

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Access to early intervention (EI) has been identified as a priority for global research in developmental disability (Collins et al., 2017;Tomlinson et al., 2014). As a term, developmental disability refers to several developmental conditions but especially developmental delay, intellectual disability and autism spectrum disorder (ASD) 1 .The onset of developmental disabilities takes place during early development and lasts throughout an individual's lifetime (Patel & Merrick, 2011). Whilst the individual needs of children with developmental disabilities are unique, general delays in cognitive and adaptive skills are present by definition (American Psychiatric Association, 2013;Carulla et al., 2011;McDonald et al., 2006). A range of other adverse outcomes are associated with developmental disabilities, such as poorer mental health, poorer physical health and social inequalities (Emerson, 2003;Emerson & Hatton, 2007;Gurney et al., 2006;Vasilopoulou & Nisbet, 2016). For example, an increased risk for behaviour problems is present in children with developmental disabilities as young as 3-5 years old (Totsika et al., 2011), and this increased risk persists into adolescence and adulthood (Gray 1 While autism spectrum disorder (ASD) is predominately used in the current paper in line with the Diagnostic and Statistical Manual of Mental Disorders-5, other autism diagnostic labels (Asperger syndrome, autism, Pervasive Developmental Disorder Not Otherwise Specified, Rett syndrome, autistic traits) are used to describe studies completed in the context prior to the widespread use of ASD as an all-encompassing autism diagnosis in instances where autism diagnostic label is pertinent to the findings.

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“…This study highlights how essential it is that professionals communicate honestly and openly. This ensures fathers have realistic expectations of their child and helps parents feel listened to (Stanford et al, 2020).…”

Section: Implications For Practice and Researchmentioning

confidence: 99%

The experiences of fathers who have a child with autism spectrum disorder: from birth to adulthood

Dewey

Hodgkinson

2021

AIA

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Purpose The purpose of this study is to explore fathers’ experiences of raising a child with autism spectrum disorder (ASD), taking into consideration how this experience fluctuates as their child develops from infancy to adulthood. Design/methodology/approach Semi-structured interviews were used to investigate the experiences of fathers who have a young adult with ASD. Seven fathers participated in this study. Data was analysed using thematic analysis. Findings Four themes were identified, these were: ubiquitous impact, divergent support, impeding factors and facilitating factors. Practical implications Findings from this study highlighted the pervasive impacts of having a child with ASD. This study highlighted the need to educate health-care professionals, the general public and prospective fathers. Creating “dads groups” could help to direct fathers towards other people who understand their situation. Finally, trialling methods to accelerate fathers’ acceptance, such as acceptance and commitment therapy (ACT), could help to reduce psychological stress. Originality/value To date, most research largely focusses on mothers’ experiences, as mothers are typically seen as the primary caregiver. Previous research also tends to focus on the earlier years of life. This research addresses the often-overlooked topic of fathers’ experiences, investigating their experience of having a child with ASD from birth through to adulthood.

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‘Above and beyond’: The perceptions of mothers of children with autism about ‘good practice’ by professionals and services

Cited by 12 publications

References 32 publications

From Someone Who May Cause Trouble to Someone You Can Play With: Stakeholders' Perspectives on Preschool Program Quality for Autistic Children

From Someone Who May Cause Trouble to Someone You Can Play With: Stakeholders' Perspectives on Preschool Program Quality for Autistic Children

Factors influencing access to early intervention for families of children with developmental disabilities: A narrative review

The experiences of fathers who have a child with autism spectrum disorder: from birth to adulthood

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