Characteristics of the autism spectrum disorder gastrointestinal and related behaviors inventory in children

Abstract

Gastrointestinal (GI) symptoms are one of the prevalent co‐occurring issues in autism spectrum disorder (ASD), though the range of symptom frequency estimates varies dramatically across studies, which can limit the further research of GI issues in ASD as well as potential treatment strategies. The wide range of prevalence estimates is partly due to the lack of standardized, validated measures of GI symptoms among people with ASD. The goal of this study was to (1) develop a measure, which included non‐verbal and mealtime behaviors, to assess for GI symptoms and (2) evaluate its psychometric characteristics. This was accomplished by drawing on two existing tools, Autism Treatment Network Gastrointestinal Inventory and the Brief Autism Mealtime Behavior Inventory, and deriving new items, to create the “ASD Gastrointestinal and Related Behaviors Inventory” (ASD‐GIRBI). The ASD‐GIRBI was piloted in an online registry of families with a child with ASD. A psychometric analysis was carried out in a sample of 334 children aged 6–17 years with ASD, resulting in a 36‐item tool. The Cronbach's alpha for the overall scale was 0.88. Exploratory factor analysis identified a seven‐factor model (1. Bowel movement pain; 2. Aggressive or disruptive during mealtimes; 3. Particular with foods; 4. Abdominal pain and upset stomach; 5. Refusing food; 6. Constipation and encopresis; 7. Motor or other behaviors). Following validation in an independent sample with clinical evaluation of GI symptoms, this tool will be helpful for both research and clinical purposes.

Prevalence of gastrointestinal symptoms among autistic individuals, with and without co‐occurring intellectual disability

“…Overall, our findings suggest that children with co‐occurring ASD and ID may have a similar likelihood of GI symptoms, but parents are less certain about the presence of these symptoms when their children have co‐occurring ID. Difficulty with assessing GI symptoms in the ASD population has been previously discussed (Buie et al, 2010; C. Holingue et al, 2022; Calliope Holingue et al, 2018; Calliope Holingue et al, 2021; Margolis et al, 2019). Our findings align with this broader body of research and additionally indicate that co‐occurring ID may compound established issues of poor measurement of GI signs and symptoms.…”

“…It may be the case that parent‐ or self‐report measures of GI symptoms, especially ones that are essentially internal sensations, are not always adequate alone in the ID population, particularly in minimally verbal or nonverbal individuals, or those with greater cognitive disability. Other sources of information (e.g., clinician exam, imaging, stool samples, heart rate variability) may be needed to supplement these tools in a subset of the ID population (Holingue et al, 2022). There are also growing efforts to examine links between potential risk factors (e.g., anxiety) and GI symptoms using more objective measures, such as heart rate variability, cortical response to stress, and stress‐associated cytokines (Ferguson et al, 2017; Ferguson et al, 2016).…”

Gastrointestinal Dysfunction in Genetically Defined Neurodevelopmental Disorders

“…[13][14][15][16][17][18][19][20][21][22][23] The various GI symptoms (►Table 1; genetic neurodevelopmental disorders [NDDs]) can be incredibly disabling, leading to reduced well-being and quality of life for autistic individuals, as well as their family. 24,25 As this burden is present across the lifespan, GI comorbidities also may contribute to an increased risk of mortality in individuals with ASD. 26,27 Challenges with Existing GI Questionnaires…”

“…In addition, Holingue et al developed and assessed the psychometric properties of the ASD Gastrointestinal and Related Behaviors Inventory (ASD-GIRBI), a 36-item measure, which draws items from two existing tools, the Autism Treatment Network Gastrointestinal Inventory and the Brief Autism Mealtime Behavior Inventory (ASD-GIRBI) and also includes de novo items. 24,29 The reason for combining these tools was to leverage the use of GI-motoric and other nonverbal behaviors from the existing ATN GI Inventory and also to complement them with items related to eating times and behaviors, which were missing from the GI Inventory but were central to the Brief Autism Mealtime Behavior Inventory. Additionally to improve the content validity, new items, such as questions about flatulence, alternating constipation and diarrhea, and unexplained irritability, were added to the ASD-GIRBI based on a review of literature, qualitative interviews with parents of autistic children, and the expertise of the research team (for details, see Holingue et al 24 ).…”

“…24,29 The reason for combining these tools was to leverage the use of GI-motoric and other nonverbal behaviors from the existing ATN GI Inventory and also to complement them with items related to eating times and behaviors, which were missing from the GI Inventory but were central to the Brief Autism Mealtime Behavior Inventory. Additionally to improve the content validity, new items, such as questions about flatulence, alternating constipation and diarrhea, and unexplained irritability, were added to the ASD-GIRBI based on a review of literature, qualitative interviews with parents of autistic children, and the expertise of the research team (for details, see Holingue et al 24 ). Most recently, the ASD-GIRBI has been piloted among autistic children 3 to 17 years old 24 and the next steps of this work include developing self-report and caregiver-report versions of both pediatric and adult tools, to accommodate individuals across the autism spectrum with a focus on clinical validation to ensure the measure is appropriately capturing GI conditions.…”