Source: Te Herenga Waka—Victoria University of Wellington
Recent research from Te Herenga Waka—Victoria University of Wellington and Autism New Zealand has shown that the way we support autistic children requires a significant shift.
“Starting in the 1980s, autism “interventions” focused on transforming the child to conform with current societal norms and expectations, and make them indistinguishable from their peers,” says Dr Hannah Waddington, Victoria University of Wellington educational psychology researcher. “Children were taught to make eye contact or to hide behaviours associated with autism like passionate interests or ‘stimming’, which are repeated physical movements or vocalisations.”
“This approach has caused a lot of stress for autistic people and their families. Masking autistic behaviour in particular has a hugely negative impact on autistic people’s mental health.”
Lee Patrick, autistic research and advocacy advisor at Autism NZ, who also worked on the new study, says:
“From an autistic adult perspective, many of the things that traditional autism interventions try to reduce or prevent are core parts of me, or things that help me function—my stims are how I show emotions and regulate sensory input, my deep interests are where I find joy, and my understanding of how my autistic brain works is what helps me find strategies to deal with the challenges that being autistic sometimes throws at me.”
“It’s bizarre to me that interventions would focus on taking away the things that make up a child’s personality, or the things that help a child navigate the world, in an attempt to make them pretend to be like their peers.”
Although many of these “interventions” still remain a common part of support for autistic children, research conducted by Dr Waddington, Lee Patrick, and their colleagues has shown that attitudes around supports for autistic children have significantly shifted.
“Our research showed that autistic adults, parents, and clinical professionals in Aotearoa and Australia now prioritise improving the child’s quality of life above all else,” Dr Waddington says. “They also highly prioritise upskilling adults to support autistic children.”
“More and more people understand that autism is a brain-based difference, not a deficit or a disorder, and that most of the difficulties experienced by autistic people come from the fact that society is not set up to support them.”
“As someone diagnosed in adulthood, there was a huge shift from feeling like an outlier in every group to meeting other autistic adults and understanding that I had a community who were like me and could understand and empathise with things I had previously thought no one else experienced. Once autistic adults get to that point, I think it’s a very short step to realising that autistic children deserve the same understanding and empathy, and that they deserve to be treated like autistic people, not defective neurotypicals,” Lee says.
Based on this research, Dr Waddington and her colleagues, including Lee Patrick, are currently working to develop a neurodiversity affirming and culturally responsive programme of support for young autistic children and their whānau.
“In line with the findings of the published article, we will work hard to ensure that this new support prioritises child and whānau quality of life above all else. A huge focus will also be on supporting those around the child such as whānau, educators, and peers to accept and embrace autistic children for who they are,” Dr Waddington says.
This new understanding of, and attitude towards, supporting autistic children must be reflected in support services, Dr Waddington says.
“Many models of support focus on changing what the child does or who they are, rather than changing their environment. Models should instead focus on quality of life for autistic children and their whānau—for example, if a child becomes upset during a support session, the priority should be understanding the reason for the child’s distress and addressing it, rather than trying to push through and focus on other goals. This approach will be much better for the wellbeing of the child and their family in the long-term.”
Professionals need to realise that community priorities have changed when it comes to supporting autistic children, and they need to change their services to adapt.
“Organisations also need to work together with autistic people to develop services that are the truly neurodiversity affirming. Society needs to change to be more accepting and inclusive of neurodivergent people. Services also need to be adequately funded to provide the time and space for professionals to make these changes.”