“When you are a parent of an autistic child, the responsibility is put on you a lot” - Learning from parents’ experiences and expectations of speech and language therapy services for autistic children in Ireland.

Abstract

Autism is a neurodevelopmental disorder, characterized by deficits in social communication and interaction, restricted interests, and repetitive behaviours. Historically framed within the medical model paradigm, there are increasing calls from the autistic community to reframe autism, using the social model paradigm and embracing neurodiversity. Autistic individuals account for 1-2% of the population and access a variety of services, such as Speech & Language Therapy (SLT), which support autistic individuals' engagement in society. 
 There is a disparity of SLT services available for autistic people in Ireland and parents’ perceptions of services have not been investigated before. We aimed to investigate the parental experiences and expectations of SLT services for autistic children and make recommendations for stakeholders of autism service provision. This presentation is relevant to anyone interested in researching service users’ / parental perceptions and how they can guide the provision of care.
 This research formed a part of a Master’s degree. It was developed by a team of researchers representing SLT and social care services. The initial idea originated from clinical practice, where parents often voiced their concerns and expectations of care. 
 Interpretative Phenomenological Analysis was used as a methodological framework for this study. Participants were parents of autistic children living in the Munster province of Ireland, and they were not previously known to the research team. Individual, semi-structured interviews were carried out to identify participants’ understanding of how they made sense of their experiences. Data was analysed in depth at an individual level before group analysis took place. 
 
 Five themes emerged during group analysis: 
 1) The journey of parenting an autistic child, 
 2) The journey of experiencing services for autistic children, 
 3) The journey of navigating SLT services, 
 4) The journey of evolving therapeutic relationships and desirable clinical qualities,
 5) The journey of evolving parental expectations of changes to services for autistic children.
 Parents’ understanding of SLT services for autism was fraught with doubts about the public health system and the financial burden of accessing private services. Parents’ searches for services revealed significant wait times and barriers to access supports. Parents desired speech and language (SLTs) with clinical experience and understanding of parents’ roles in SLT. The need for reduced waiting periods for services and compassionate support for families of autistic children was also reported.
 Findings provide insight into parents’ evolving expectations and suggested changes for services for autistic children, which are important for autism service providers. Future research should focus on autistic individuals’ and SLTs experiences of SLT services for autism.