Attitudes of the autism community to early autism research.
European autism stakeholders welcome early baby-sibling research as long as we drop the stigmatizing ‘at-risk’ label.
01Research in Context
What this study did
The team asked 2,317 people across Europe what they think about baby-sibling autism studies.
They surveyed autistic adults, parents, clinicians, and researchers online.
Questions covered study goals, words they like or hate, and who should decide research priorities.
What they found
Most groups support studying babies who have an older autistic sibling.
Autistic adults were the only group that disliked the label ‘at-risk’.
Everyone preferred neutral phrases like ‘infants with an older autistic sibling’.
How this fits with other research
Salomone et al. (2016) asked the same European families if their toddlers were getting any intervention. They found more than a large share were getting none, showing that support, not interest, is the gap.
Lineberry et al. (2023) later used the same multi-informant style to ask UK adults what happens after diagnosis. Less than a large share received any follow-up care within a year.
Together the three surveys trace one story: families want early help and research, but services lag behind.
Why it matters
When you talk with families about sibling studies, skip the words ‘at-risk’ and say ‘infant with an older autistic sibling’. The data show this small change keeps autistic adults engaged and avoids stigma. Use the phrase in consent forms, flyers, and social media posts today.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Replace every instance of ‘at-risk infant’ in your intake packet with ‘infant with an older autistic sibling’.
02At a glance
03Original abstract
Investigation into the earliest signs of autism in infants has become a significant sub-field of autism research. This work invokes specific ethical concerns such as use of 'at-risk' language, communicating study findings to parents and the future perspective of enrolled infants when they reach adulthood. This study aimed to ground this research field in an understanding of the perspectives of members of the autism community. Following focus groups to identify topics, an online survey was distributed to autistic adults, parents of children with autism and practitioners in health and education settings across 11 European countries. Survey respondents (n = 2317) were positively disposed towards early autism research, and there was significant overlap in their priorities for the field and preferred language to describe infant research participants. However, there were also differences including overall less favourable endorsement of early autism research by autistic adults relative to other groups and a dislike of the phrase 'at-risk' to describe infant participants, in all groups except healthcare practitioners. The findings overall indicate that the autism community in Europe is supportive of early autism research. Researchers should endeavour to maintain this by continuing to take community perspectives into account.
Autism : the international journal of research and practice, 2017 · doi:10.1177/1362361315626577