Researchers from Australia, United States, United Kingdom and India engaged with 128 Autistic people and 110 non-Autistic members of the autism community to understand their views on providing support to infants who might be Autistic.
Dr Catherine Bent La Trobe’s Senior Research Fellow and lead researcher, said the study, published in the international journal Autism, looked at community views about the acceptability of providing support to parents of infants who might be Autistic in the first two years of their child’s life.
“Most families have to wait until after an autism diagnosis to receive support, but neurodivergent infants often show communication differences in the first years of life and parents can now be offered support early, before an autism diagnosis,” Dr Bent said.
“Recent research evidence is telling us that by supporting parents early, we can promote developmental outcomes for neurodivergent infants. But we wanted to hear from families – and communities – with lived experience to understand what they think about providing supports at such a young age and before a child is diagnosed as Autistic.”
Almost all Autistic and non-Autistic participants surveyed agreed with the idea of offering support for parents and babies but stressed that it depended on the type of support. For example, programs that help caregivers understand and respond to their infant’s feelings, needs and behaviour and improve infants’ quality of life were considered acceptable.
Dr Rachel Jellett, a parent, psychologist and researcher who consulted on the study as part of an international advisory group said working with parents to understand and respond to their baby’s cues ultimately helped to nurture a supportive and attuned parent-child relationship.
La Trobe Associate Professor Kristelle Hudry, a psychologist and senior author of the study said strong early support that focused on communication skills, the parent-child relationship, and parents’ ability to respond to their child in supportive ways was foundational to supporting child development and learning, and for wellbeing in later life.
Many Autistic and non-Autistic community members surveyed indicated that early family supports should not be about preventing autism or suppressing Autistic behaviour.
La Trobe’s Dr Patrick Dwyer, an Autistic researcher and study co-author said the team heard from participants that the goal should not be to enforce narrow neurotypical standards of behaviour and development.
Study participants indicated that programs for parents and babies should be neuro-affirming, individualised and child-led, and should also consider parents’ own possible neurodivergence.
“These findings reflect the nuanced nature of the neurodiversity movement,” Dr Dwyer said.
“Autistic and non-Autistic community members often advocate values aligned with the neurodiversity movement. But they’re not saying we shouldn’t offer supports to Autistic children. They’re saying those supports should be thoughtful, respectful and guided by children’s preferences.”
The study findings also highlighted some differences in opinion between Autistic and non-Autistic community members, with non-Autistic participants placing greater emphasis on improving family quality of life, while Autistic participants clarified that parent wellbeing was important but should not be prioritised over the needs of the child.
They were also more likely than non-Autistic participants to suggest that Autistic community members be involved in the development and delivery of support programs. “This emphasises the importance of listening to Autistic people, including Autistic parents, whose insights have unfortunately been ignored too often,” Dr Dwyer said.
The research published in Autism will feature in a forthcoming Special Issue on Autistic Rights Movement and Social Model in Autism Research and Practice.
Media Contact:
Elaine Cooney – E.Cooney@latrobe.edu.au, 0487 448 734
