“I Know It’s Very Spectrum-y”: Autistic Women Reflect on Sensory Aspects of Food and Eating

Abstract

Background:

There is scant research on autism-related eating challenges in autistic adults. Characteristics often associated with autism (e.g., sensory sensitivities, cognitive rigidity) may underpin issues with food and eating in autistic adults. Contextual factors also play a role, although they are rarely accounted for.

Methods:

This study explored autistic women’s experiences of sensory aspects of food and eating utilizing a critical realism orientation and reflexive thematic analysis. Ten semi-structured interviews explored autistic women’s food and eating experiences. Interviews were conducted online, audio recorded, and transcribed.

Results:

Three core themes were identified from qualitative data analysis: (a) sensory factors influence experiences of food, eating, and eating environments; (b) impact of trauma; and (c) internalization of societal stereotypes. A novel finding was the high prevalence of participants who reported seeking pleasurable sensory stimulation via food and eating. Distress was linked to lack of understanding of autistic sensory food and eating needs by nonautistic individuals. Participants also used nonautistic experiences and societal stereotypes as a benchmark for which food and eating tendencies are acceptable.

Conclusions:

Further research is urgently needed to develop our understanding of how sensory factors and societal stigma influence food and eating experiences of autistic women and the broader autistic community.

Community Brief

Why was this study done?

Autistic people are often described as having problems with food and eating. Most of the research has looked at infants and children, through the eyes of parents and professionals. Very few studies have focused on autistic adults, or included autistic voices. These approaches see differences in autistic ways of eating as problems to be solved.

What was the purpose of this study?

In this study, we talked to autistic women about food and eating. We wanted to understand the things that influence what they eat, the way they eat, where they eat, and how they feel about food.

What did the researchers do?

We conducted online video interviews with 10 autistic women who responded to an invitation to participate in the study posted on social media. Interviews lasted an average of 51 minutes. The research team consisted of two autistic autism researchers and two nonautistic psychologists with experience researching and working with autistic women.

What were the results of the study?

The women described how sensory aspects of food can make eating enjoyable or distressing. Rules and rituals around eating provide comfort. Other people’s negative reactions to their natural ways of eating can cause distress and trauma.

What do these findings add to what was already known?

Our findings suggest that autistic ways of eating may be functional rather than harmful. Eating safe foods and following routines help autistic people manage complex sensory and social challenges.

What are potential weaknesses in the study?

This was a small sample and predominantly Caucasian, higher socioeconomic status, highly educated, younger adult women, limiting the generalizability to the broader population of autistic people.

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

The findings highlight the nuances and utility of autistic food and eating approaches, opening a discussion beyond neurotypical norms and social constructions. This may support autistic people to de-pathologize these approaches and deconstruct internalized negative stereotypes, supporting their agency and self-determination. Understanding the functions of autistic food and eating experiences could help families and service providers support autistic people. We hope that this study will encourage more research in this area, as well as the development of sensory-appropriate, autism-friendly food and eating environments, and address misperceptions among clinicians and caregivers that our eating behaviors are problems to be “fixed.”