Autistic and autism community perspectives on infant and family support in the first two years of life: Findings from a community consultation survey
Authors: Bent Catherine A , Aulich Alexandra , Constantine Christos , Fidock Esther , Dwyer Patrick , Green Cherie , Smith Jodie , Gurba Ava N , Harrington Lucas T , Gore Katherine E , Rabba Aspasia Stacey , Ayton Lauren N , Fordyce Kathryn , Green Jonathan , Jellett Rachel , Kennedy Lyndel J , MacDuffie Katherine E , Meera Shoba S , Watson Linda R , Whitehouse Andrew JO , Hudry Kristelle 
Published: July 2024

Emerging evidence suggests parenting supports implemented in the first 2 years of life may influence developmental outcomes for infants more likely to be Autistic. Yet questions remain about acceptability of these supports to the Autistic and autism communities. Through mixed-methods participatory research – co-designed and produced by Autistic and non-Autistic researchers – we sought diverse community perspectives on this topic, including to understand the relative acceptability of different support options. A total of 238 participants completed our online survey: 128 Autistic and 110 non-Autistic respondents, some of whom also self-identified as parents of Autistic, otherwise neurodivergent, and/or neurotypical children, and/or as health/education professionals and/or researchers. Most participants agreed that very-early-in-life approaches should help parents understand and support their children, and disagreed that these should seek to suppress autistic behaviour. Most agreed with the goal of respecting infant autonomy, and that parent education towards creating sensitive, accommodating environments could be appropriate, albeit with nuanced differences-of-opinion regarding the acceptability of specific therapeutic approaches. Participants generally endorsed the terms ‘support’ (vs ‘intervention’) and ‘early-in-life’ (vs ‘at-risk’/‘pre-emptive’). Engaging equal-power partnerships for the development, delivery of, and discourse around early-in-life autism supports will ensure end-user community values and needs are respected.

Lay abstract

Most support programmes for Autistic children are available only after they are diagnosed. Research suggests that parenting supports may be helpful for parents and their infants, when provided in the first 2 years of life – before a formal diagnosis is given, but when information suggests an infant is more likely to be Autistic. However, we do not know how acceptable these types of supports might be to the Autistic and autism communities. We asked 238 Autistic and non-autistic people – some of whom were parents, and some of whom were professionals working in research, health and education – about their perspectives on very-early supports. People generally agreed that it could be acceptable to work with parents to help them understand and support their child’s specific needs and unique ways of communicating. People suggested a variety of support strategies could be acceptable, including parent education, changing the environment to meet an infant’s needs, and creating opportunities for infants’ to make choices and exercise control. People preferred respectful and accurate language – including the term ‘support’ (rather than ‘intervention’) and ‘early-in-life’ (rather than ‘at-risk’ of autism, or ‘pre-emptive’ when describing developmental stage). Continuing to work with community members will help to make sure autism support programmes are relevant and helpful.