“The Wrong Supports Are Worse than no Support”: Autistic Perspectives on Early-in-Life Infant Autism Supports

Abstract

Background:

Evidence suggests that the earlier supports are provided to young Autistic children, the better the overall outcomes. Supports have typically only been available after an autism diagnosis but with increased knowledge about early developmental trajectories, clinical supports can now be offered prediagnosis for infants showing early autism features and/or those with a family history of autism. Nevertheless, we currently know little about the Autistic community perspectives on the acceptability of prediagnostic supports, and without this information, we cannot be confident that these supports align with community preferences and priorities.

Methods:

In this study, we interviewed 16 Autistic adults—10 parents and 6 nonparents—about their views on very early-in-life (i.e., prediagnostic) infant autism supports. We analyzed the data using reflexive thematic analysis.

Results:

Participants expressed that a range of supports should be available based on individual family needs, with design and delivery informed by meaningful input from the Autistic community. Participants strongly opposed supports that encouraged children to mask, camouflage, and/or comply with non-autistic norms. They endorsed supports where caregivers were aided to recognize and respond to infant attempts to communicate and interact, and which optimized infant quality of life and wellbeing. Beyond their perspectives on what very early supports should look like, participants also reflected on the challenges Autistic individuals—including themselves—faced trying to navigate neurotypical service systems, including often feeling unrecognized, judged, and unsupported, something that was especially difficult for Autistic adults of all genders who were new to the parenting experience.

Conclusion:

These findings can inform what future very early supports look like for neurodivergent infants/young children and how we can best support new parents who are themselves autistic.

Community Brief

Why is this an important issue?

Autistic children usually only receive services after they receive an autism diagnosis. With increased knowledge about the development of autism, it is becoming possible to offer effective supports for infants showing early signs of autism before they receive a diagnosis. Yet, there is little understanding about what Autistic people think about these kinds of supports, including which supports they think are most acceptable and meaningful for these infants. Consideration of Autistic community perspectives is crucial for the success of services for children showing early autism features.

What was the purpose of this study?

This study aimed to understand the first-hand perspectives of Autistic adults on services and supports for infants showing early autistic features.

What did the researchers do?

We interviewed 16 Autistic adults on their views around early services for infants who may be autistic. Specifically, we looked at what aspects of support might be acceptable to Autistic people as well as explored their views on support goals, therapeutic strategies, delivery methods, target populations, and language used in these services. This was a participatory research study that actively involved the collaboration of Autistic and non-Autistic people in the design, conduct, and analysis of the research.

What were the results and conclusions of the study?

Autistic adults said that a wide range of supports were needed for infants who may be autistic. They felt that supports should be based on individual need and involve input from Autistic people. Autistic participants rejected any supports that could encourage children to mask or comply with neurotypical social standards. They supported the use of services that taught caregivers to better respond to infant communication and that aimed to improve infant quality of life and wellbeing. Autistic individuals also reflected on challenges navigating services, especially Autistic parents.

What is new or controversial about these findings?

This is one of the first research studies to directly ask Autistic adults what they think about early supports for infants who may be autistic. Autistic perspectives can be useful in determining what future early supports look like for children and their families. This study also provides insights into how we can best support Autistic parents.

What are potential weaknesses in the study?

Most participants in this study were female or highly educated. Future work is needed to better understand the diverse perspectives of Autistic adults across backgrounds. This includes looking at differences across Autistic people of different races, ethnicities, genders, abilities, and intervention experiences. Future research should also explore Autistic adults’ views on what kinds of supports are valued and in what contexts they are most appropriate.

How will these findings help Autistic adults now or in the future?

Our findings illustrate the types and features of early supports that might be most beneficial for children who may be autistic. By incorporating the perspectives of Autistic adults, we can make sure services for infants and families are most helpful and set up opportunities for autistic flourishing into adulthood.