A Mixed-Methods Study of Nutrition Interventions Implemented in Autistic Children by Caregivers From a Facebook Support Group

Abstract

Background

Caregivers of autistic children (CACs) use nutrition interventions to improve autism-related symptoms. However, the efficacy of most interventions lacks evidence. By sharing on social media personal experiences with nutrition interventions in their children, CACs could be disseminating ineffective or harmful interventions to others.

Objective

To examine nutrition interventions implemented in autistic children by caregivers, including caregivers’ expectations and claimed effects of those interventions.

Study Design, Settings, Participants

Researchers extracted nutrition intervention-related threads posted from January to December 2022 on a publicly-available Facebook page for CACs. Participants were CACs who posted and/or commented on an extracted thread.

Measurable Outcome/Analysis

Researchers coded each post and comment for participant identification, nutrition intervention implementation, expectation, and claimed effect. Analysts deductively categorized each intervention, expectation, and claimed effect. Researchers calculated nutrition intervention frequency as well as expectation and claimed effect frequency within each intervention.

Results

Of the 2677 participants, 32.4% implemented at least one nutrition intervention in their child. Of the 308 implemented interventions, CACs most frequently reported using vitamins, laxatives, and melatonin to treat their child's autistic-related symptoms. Other less common interventions included cannabinoids, restricting food dyes, the Nemechek protocol, and the GAPS diet. Of the 867 CACs implementing at least one intervention, 29.4% and 15.5% expected the intervention to improve their child's physiological and/or behavioral symptoms, respectively. While the vast majority of CACs’ claimed effects aligned with their intervention expectations, 6% stated the intervention had no effect and 4.3% stated the intervention caused negative effects.

Conclusions

Caregivers reported using over 300 different nutrition interventions, including some not previously found in the literature. Little to no evidence exists about the safety and efficacy of most of these interventions. Additional research is needed to create evidence-based recommendations for nutrition intervention implementation in autistic children. Furthermore, healthcare providers can encourage CACs to discuss nutrition intervention implementation with them to help identify unevaluated interventions and allow practitioners to provide evidence-based alternatives.

Funding

None