Exploring the Impact of Selective Eating on Key Life Domains Among Transition-Age Youth with Autism Spectrum Disorder

Background: Eating can be a way to establish and build social connections and a means of expressing affection, sociability, and hospitality. However, it is not understood how selective eating, common among youth with autism spectrum disorder (ASD), may impact their mealtime experiences, social opportunities and general well being. Transition to adulthood has emerged as an important focus for supporting youth with ASD, particularly since relatively few ongoing supports and services exist for this population after they age out of school. Despite the high level of parental concern about selective eating and a growing literature that suggests that proxy reporting misses important information that only individuals themselves can report, no systematic studies to date have queried youths themselves about their experiences with selective eating.

Objectives: The objective of this qualitative study was to explore the impact of selective eating on key life domains of transition-age youth with ASD who self-identified as being food selective. One key goal of the study was to inform the development of supportive strategies to address food selectivity and navigating social and other opportunities that involve eating.

Methods: We conducted 19 in-depth interviews with transition-age youth with ASD. Recruitment occurred through schools, listservs, and organizations that serve youth with ASD and their families. A semi-structured interview guide was developed with questions about selective eating and its impact on mealtimes with family, activities with peers that involve food, and other social situations. Participants were also asked about their feelings about their selective eating and their interest in support. Data were analyzed using descriptive thematic coding.

Results: The mean age of participants was 21 years (SD 1.67 years). Fourteen were male, three were female, one was transgender, and one identified as non-binary. Twelve lived at home with their parents, five lived at school, and two lived with a roommate. A major theme that emerged was that the impact of selective eating on participants’ lives diminished with age. Participants’ perceived that this resulted from gentle pressure from parents, internal pressure, or just the passage of time. Participants described common strategies for coping with their selective eating in social situations, including picking out disliked foods, learning about the menu prior to an occasion, focusing on the foods they do like, eating ahead of time, carrying snacks, eating enough of disliked foods to avoid hunger, and occasionally going hungry. Many participants described family and peers as accommodating, but not necessarily understanding, their food selectivity. Most participants said that they were able to manage social situations that involved eating well enough and most youth were not especially interested in receiving help.

Conclusions: The transition-age youth interviewed indicated that they have developed coping strategies to manage social situations involving food. A responsive approach to supporting such youth would likely involve recognizing the effort and skills that the youth have already developed around this issue, respect for their growing autonomy, and could potentially involve a peer support network with other youth with ASD who understand the challenges and can share helpful strategies.