Providing family support to parents of autistic children is important for wellbeing and positive family relationships.
But mothers and fathers have different support needs and this is often not reflected within services.
Northern Care Alliance lead children’s learning disability nurse Dr Louise Cooper focused on this gap in her recently completed PhD, shedding new light on fathers’ experiences with children showing behaviours of concern.
Dr Cooper explained: “Fathers may face additional challenges related to preserving their masculinity alongside meeting the needs of the family. In addition, there’s been a lack of research where fathers of autistic children are themselves diagnosed as autistic.”
Support group
Her key findings related to fathers feeling alienated from services, their time being out of step with their children’s time – such as needing to be at work when key meetings about their children are held during the daytime, and difficulties having the capacity to solve problems and negotiate boundaries. She also found the fathers in her study showed paternal love in different ways, including through self-sacrifice and a focus on their strengths and capabilities.
As part of her PhD at the University of Sheffield, she set up support group Fathers of Autistic Children Empowered to Support (FACES). It holds monthly walk and talk sessions at Clifton Country Park where both fathers and their children experience support within a relaxing environment. A volunteer father helps with the group, which also has a website and WhatsApp group.
Comfortable environment
Fathers have said they find the group helpful, providing a comfortable environment where conversations flow naturally and they have suggested further developments, such as bringing in professionals to join the walk and talk sessions.
Dr Cooper is now planning further journal articles based on her PhD and aims to conduct more studies in this field, including participatory research and further research for parents who have autism themselves.
She has been working with children since 2003 and previously completed her Masters in autism, which opened her eyes to developing an academic career alongside clinical practice. Dr Cooper added: “Finding funding is a challenge, as is balancing research with clinical responsibilities – but it’s important that nurses get involved in learning disability research.”
Her paper Supporting fathers of autistic children through ‘walk and talk’ groups has been published in Learning Disability Practice.