What does the autism community think of research with infants with higher likelihood of later autism diagnosis? Results of a large international survey.

Background Research in early autism, especially recruitment of infants having higher likelihood of ASD by virtue of having a diagnosed older sibling, carries specific ethical concerns. These are even more pointed when studies consider involving an intervention component. There is to date no research explicitly addressing the attitudes of the stakeholder community to this important but challenging work. Objectives Our goal was to elicit the opinions of the autism community on the practical and ethical issues surrounding early autism research with infant groups. In addition, we were interested to explore differences between stakeholder groups (parents, healthcare and education practitioners, and adults with autism). Methods Five focus groups were convened in the UK, Italy and Portugal involving autistic adults, parents of children with autism and professionals. Data from these focus groups informed the design of an online survey which was translated and circulated to the autism community in the Czech Republic, France, Finland, Italy, Israel, Macedonia, Norway, Poland, Portugal, Spain and the UK. The survey collected demographic data and information about local services, but the majority of questions explored attitudes to early autism research under five topic headings: reasons for doing research; involvement in research; acceptability of measures; intervention; at-risk language. Results Respondents (n=2318) were supportive of the need for early autism research (97% agree) and their top priority targets were the genetic basis of autism and the early signs of autism in infants. Autistic Adults differed significantly from other groups in their attitudes and priorities for research, for example ranking the search for early signs of autism in babies as a lower priority than did other groups (χ2 (24, n=2251) = 55.05, p<.001). Participants, especially autistic adults, did not favour the use of the phrase “infants at-risk of autism”, with a significant minority across all groups (31%) agreeing that this phrase makes parents feel blamed. Preferred language included “higher chance” and “higher likelihood” of autism. Results also reveal how parents decide whether to take part in research (see Figure 1), what practical information stakeholders want from research, how research findings should be disclosed to participants and whether intervention is considered an essential component for research (see Figure 2). Parents show a strong preference for home-based and parent-training intervention types. Regression analyses will be presented to reveal the impact of aspects such as nationality, quantity and quality of local services, and (for parents) age of diagnosis of a child with autism, on attitudes to early autism research. Conclusion These data reveal the priorities of stakeholders, and are thus important to the future success and ethical grounding of early autism research worldwide. They will be discussed in terms of: 1) guidance for early autism researchers; 2) what they reveal about differences in attitudes among the autism community more generally; and 3) consideration of a wider need for researchers to engage directly with the autism community.