Community perspectives on the appropriateness and importance of support goals for young autistic children

Abstract

There is little research regarding autistic adult, parent and professional perspectives on support goals for young autistic children. A total of 87 autistic adults, 159 parents of autistic children, and 80 clinical professionals living in New Zealand and Australia completed a survey about the appropriateness and importance of common support goals for young autistic children. Goals related to the adult supporting the child, the reduction and replacement of harmful behaviours, and improving child quality of life were the highest priority across participant groups, while goals related to child autism characteristics, play and academic skills were the lowest priority. Compared to parents and/or professionals, autistic adults gave lower priority ratings for play skills, autism characteristics and participation goals and were more likely to rate these goal domains as inappropriate. More research is needed to understand the underlying reasons for these similarities and differences. Lay abstract Researchers do not know much about what autistic adults, parents and professionals think about support goals for young autistic children. People’s views of support goals might also be influenced by their beliefs about early support more generally. This survey involved 87 autistic adults, 159 parents of autistic children and 80 clinical professionals living in New Zealand and Australia. We asked participants questions about themselves and what they thought about early support for young autistic children in general. We then asked participants to rate whether different support goals were appropriate for young autistic children and, if they were appropriate, to rate their level of priority. We found that autistic adults, parents and professionals all rated goals about the adult changing to better support the child, reducing and replacing harmful behaviours and improving the child’s quality of life as the highest priorities. They all rated goals about autism characteristics, play skills and academic skills as the lowest priorities. Compared to parents and/or professionals, autistic adults gave lower priority ratings for play skills, autism characteristics and participation goals. Autistic adults were also more likely to rate goals related to play skills and autism characteristics as inappropriate. While these three participant groups generally agreed on the order of priority of early support goals for young autistic children, autistic adults found goals related to autism characteristics, play and/or participation to be an even lower priority and less appropriate than parents and professionals.

Evaluation of a Two-Tiered Coaching Programme for Parents of Young Autistic Children

“…This change in perspectives has been driven by the neurodiversity movement, as neurodivergent activists have called for increased recognition of the strengths and rights of Autistic people (Pellicano & den Houting, 2022). In Aotearoa New Zealand (referred to herein as New Zealand) and Australia, many Autistic and Autism communities are increasingly aware of and adhere to this neurodiversity movement (Waddington et al, 2023). The increasing awareness of this movement is due largely to Autistic self-advocacy (Leadbitter et al, 2021).…”

“…Furthermore, this perspective emphasises that Autistic individuals are not in need of treatment, normalisation, or cures (Dawson et al, 2022), but rather, supports that change the physical or social environment around the individual, and services that focus on improving an individual's quality of life (Waddington et al, 2023).…”

“…Additionally, there is a lack of empirical support for the theoretical assumption that earlier support consistently results in better outcomes, as research evaluating predictors of child response to support programmes has not found a clear relation between child age and outcomes (Trembath et al, 2022). Finally, any early support targeting goals that focus on making Autistic children indistinguishable from their peers, reducing Autism characteristics, or losing an Autism diagnosis are not acceptable from a neurodiversity perspective (Dawson et al, 2022;Waddington et al, 2023).…”

“…From a neurodiversity perspective, many Autistic people benefit from person-centred supports that take the individual's needs into account and focus on improving quality of life (Autistic Self Advocacy Network [ASAN], 2021). There is agreement amongst the Autistic and Autism community on the need for early support that focuses on adults changing their behaviour to better support the child, reducing and replacing behaviours that cause harm to the child or others, and improving the child's quality of life, communication, and daily living skills (Waddington et al, 2023). Therefore, from a neurodiversity perspective, teaching young Autistic children to be able to communicate in their preferred ways, and supporting skills development for everyday tasks, may be acceptable and set the foundation for learning diverse adaptive and self-advocacy skills (ASAN, 2021;Dawson et al, 2022;Kapp et al, 2013;Waddington et al, 2023).…”

“…Nonetheless, even small improvements in language and communication outcomes may be promising, given that most PMSs are low-intensity, and communication is a core challenge for many Autistic people (Tiede & Walton, 2019). Furthermore, improving communication is a goal agreed upon by many in the Autism and Autistic communities as appropriate as it can improve people's quality of life and ability to advocate for themselves (Dawson et al, 2022;Leadbitter et al, 2021;Waddington et al, 2023).…”