The Alice in Wonderland Syndrome: A Mixed-Method Exploratory Analysis of AIWS Experiences

Abstract

The Alice in Wonderland Syndrome (AIWS) is a rare neuropsychological disorder impacting somesthetic and visual perceptions, with symptoms ranging from body-image to time distortions. Objective: to expand current knowledge on the Alice in Wonderland Syndrome (AIWS) by investigating the experiences of individuals with the syndrome through a review of literature and posts on AIWS-specific online support communities. Methods: This study was conducted as a mixed-method exploratory investigation of AIWS from two independent sources: a meta-analytical review of published scientific literature from 1955 to 2022 and a review of narrative posts from a moderated online forum specific to AIWS. The online forum was purposefully selected after performing a keyword search on electronic databases, and the literature pertaining to AIWS case series were found using Pubmed. The material from both data collection approaches was subsequently analyzed using qualitative thematic analysis, with relevant descriptive data quantified in numerical form. A total of 253 published cases and case series from 1955 to 2022 were identified and of 194 forum posts, 75 narrative cases met the eligibility criteria. Eligible forum cases were restricted to individuals who: were formally or self-identified as having or having had AIWS and those reporting a family members experience with AIWS. Results: Valuable insight into informational versus emotional needs of individuals with AIWS was brought to light. Support was sought through voluntary sharing of knowledge, personal reactions, diagnostic concerns and symptom-management advice. Medical interventions were more prevalent in published data, with an etiological/neurological focus- infectious causes in children and migraines as an associated condition in adults- as well as a pharmacological one. A potential familial or genetic component of AIWS additionally arose from forum cases. A prevalence of the onset of AIWS in pediatric populations, personal and environmental reactions, cultural factors and a lack of knowledge contributed to underreporting. Nosographical differences further hindered the early diagnosis of AIWS and the lack of appropriate interventions. Conclusion: A patient-centered experiential and functional approach to the classification of AIWS symptoms and ensuing symptom-management options could help populations feel seen, heard and understood, aid reporting and increase access to early intervention and coping techniques.