“the Dots Just Don’t Join up”: Understanding the Support Needs of Families of Children on the Autism Spectrum

Background: Parenting a child on the autism spectrum can be a hugely rewarding experience. It can also be stressful for a variety of reasons, with parents often reporting stress levels that exceed those among parents of typically developing children, or those with other developmental conditions. Despite this knowledge, remarkably little research has examined the types of support that these families perceive to be beneficial to their and their children’s lives.

Objectives:  This study, co-produced with school-based professionals, sought to establish the support needs of autism families, living in inner-city London, from their own perspectives.

Methods:  In Study 1, a sample of ethnically- and socioeconomically-diverse parents of autistic children with additional intellectual disabilities and limited spoken communication (n=139) took part in a brief initial survey examining parental wellbeing, self-efficacy and the extent to which they felt supported. In Study 2, in-depth semi-structured interviews were conducted with a sub-group of these parents (n=17), some of whom reported feeling supported in Study 1 and some of whom did not.

Results:  The results from Study 1 suggested that, overall, parents’ reports of their own mental and emotional health was encouraging: the majority of parents rated their health as ‘good’, ‘very good’ or ‘excellent’. There was a substantial minority (23%), who reported they did not have someone to turn to for day-to-day help and support. Parents participating in Study 2 reported a distinct lack of services and supports designed to address their and their child’s specific needs (particularly with regards to children’s sleep, dietary, language and self-care needs), which ultimately made them feel isolated and alienated. When support was available, it was often perceived to be extremely difficult or even impossible to access and failed to fit with the realities of their everyday lives. Parents pointed to a combination of formal and informal supports that they felt would best meet their needs, generally corroborating the findings from the Study 1 survey data. The interviews, however, went further to identify the exact nature of the services they desired – that is, services that were proactive and family-centred in their approach, ultimately making them feel more connected and cared for.

Conclusions: Supporting parents around the specific areas of expressive language, diet, sleep and self-care skills should be seen as priorities for service providers. Critically, providing this support should be done within the context of a relational, family-centered approach – one that takes the time to understand the specific needs of the whole family (including siblings), building a close working relationship with them, and ensuring that they are supported at times when the parents and families feel they need it most.