Parenting a child with autism and the power of hope

Dr Katie Weastell explored how personal strengths impact the wellbeing of caregivers of children with ASD

How others perceive and react to children with autistic spectrum disorders (ASD) can impact parents dealing with their child’s difficulties. But new research says despite feeling judged or misunderstood, parents can develop new strengths from the challenges.

Dr Katie Weastell, who graduated last week with a Doctorate in Clinical Psychology from Massey University, explored this sensitive issue in her doctoral thesis. Her research focussed on the concept of “stigma by association”, where parents are judged and treated harshly by others who assume parents are to blame for the ASD child’s difficulties.

She looked at whether personal signature strengths (particularly hope, gratitude and curiosity) may decrease the impact of “stigma by association” on caregiver wellbeing. She also examined whether, in spite of documented negative outcomes for caregivers, there is in fact “room for a caregiver to experience growth as a by-product of raising a child with an ASD”.

Participants took part in interviews or completed an online questionnaire, reporting difficulties such as practical restrictions, personal costs and social stigma. Every caregiver was found to have experienced stigma by association.

“Caring for a child with an ASD is thought to be more stressful than caring for children with other chronic disabilities. Stress, depression, and anxiety are found at higher rates in parents of children with an ASD in comparison to the general population,” she says. 

“Along with their child’s difficulties with ASD, a primary caregiver can also expect to experience financial, workload, and time strain, isolation, a battle to access adequate resources, and subsequent marital dissatisfaction, stress, grief, loss, and decreased psychological and physiological wellbeing.”

One participant described the difficulties of being in another environment. “We're at somebody's house and they've got all their trinkets. He [the child] just comes along and sweeps them off, or he runs through the house with food or, you know, like we can't control that. And it's just really difficult to do.”

Many told of the social and systematic stigma (in education and health services) they experienced, and of being excluded or ignored.

Finding the positives in a challenging life

Feedback from participants also included strong positive emotions generated through raising a child with an ASD, notably love, pride and gratitude.

“You know there’s a lot of growth and learning about how a mind can operate differently,” said one participant. “And I learned a lot about how minds work. How people work.”

When asked about how they had changed as a result of parenting their child with an ASD, the most common strength referenced by caregivers was ‘perspective’, as well as bravery and courage when advocating for their child.

In the context of parenting a child with an ASD, the skill often associated with positive health – and therefore identified as a protective factor – is ‘positive reframing’. Responses from participants suggested that strengths of hope and gratitude (both strengths known for their association with positive reframing) can support wellbeing, even in the face of stigma by association, Dr Weastell says.

Creating awareness in the wider community

Autism spectrum disorders are neuro-developmental conditions usually identified in early childhood that present as complex and lifelong social, communication, and behavioural difficulties, and affect approximately 116 in every 10,000 kids in New Zealand.

Dr Weastell hopes the findings from her research will help to bolster awareness and self-confidence among parents of children with ASD, as well as increase understanding in the wider community of the struggles and stresses these parents are under.

“It was clear to me that in order to improve the lives of these caregivers, and subsequently improve the lives of these children, that public attitudes need to change.”

“Promisingly, all caregivers were able to identify many ways in which they had grown as a by-product of the experience of raising their child, whether it was through increased positive emotions, experiences, or personal development.”

She says her findings suggest that “in spite of caregivers’ challenges, they may not only survive, but thrive”.

Dr Weastell, who previously gained a BA (Honours) in Psychology at Massey’s School of Humanities and Social Sciences, is currently working for the Hutt Valley District Health Board as a clinical psychologist. She was one of five who graduated from the School of Psychology with Doctor of Clinical Psychology degrees.

Read thesis: Raising a Child with an Autism Spectrum Disorder: The Experience of Stigma by Association, its Impact on Caregiver Wellbeing, the Influence of Signature Strengths, and the Experience of Growth.

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