‘I'm his voice and I have to be': Maternal experience of transition of their son with ID and ASD into adulthood

Abstract

This study looks at the maternal experience of transition from child services to adult services of their son with ID and ASD. A useful description of transition is that of Blum et al. (1993): “Transition is a multifaceted, active process that attends to the medical, psychological, and educational/vocational needs of adolescents as they move from the child-focussed to the adult-focussed health-care system. Health transition facilitates transition in other areas of life as well (e.g., work, community, and school). It implies an increase in independent behaviour and personal autonomy but need not entail a change in health providers” (p.573). Transition tends to connote an active process towards a positive outcome. In contrast, transfer between services can be more of a one-off event with little or no hand over of care (Paul et al., 2013); these authors noted that while transfer of patients from one service to another was common, transition in line with the definition of Blum et al. (1993) was rare. Previous studies emphasise the challenges that young people and their parents face at this time of transition from (e.g., Cheak-Zamora et al., 2015; Kaehne, 2011; Pallisera et al., 2018). Existing research in this area has generally focussed on people with Intellectual Disability (ID), or with Autism Spectrum Disorder (ASD), and less so on people with both conditions (Dyke et al., 2013; Milen & Nicholas, 2017). Also, as existing research has not focussed solely on the female parent/guardian (FPG), there is value in having a homogenous female sample. For example, Hatfield et al. (2017) elicited the viewpoint of 9 parents (8 were mothers) regarding transition planning of adolescents with ASD (male and female, nonID) using phone and in-person interviews. The present research aimed to permit FPG’s to express their experiences, especially ones that might be unique to them. This research aimed to: Explore and describe, using qualitative interviews, FPG perceptions and experiences of this transition (i.e., from child to adult services, covering health, social care, vocational needs, and family). Contribute to clinical practice and guideline development.