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Cited by 297Autism Spectrum Disorder ResearchGastrointestinal motility and disordersChild Nutrition and Feeding Issues

Gastrointestinal symptoms in autism spectrum disorder: A review of the literature on ascertainment and prevalence

Open access
Holingue, Calliope, Newill, Carol, Lee, Li‐Ching, Pasricha, Pankaj J., Daniele Fallin, M.·2018·Autism Research
DOI 10.1002/aur.1854PMC PMC5773354
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Abstract

There is no standard approach to measuring GI symptoms in individuals with ASD, despite postulated interactions. The objectives of this study were to (a) describe the range of GI symptom ascertainment approaches in studies of ASD, (b) describe the range of prevalence estimates across studies, and (c) assess associations between ascertainment approach and prevalence estimates. Studies published from 1/1/1980 to 1/31/2017 were collected via PubMed. Eligibility included studies with at least ten individuals with ASD that measured GI symptoms or conditions. We excluded review and hypothesis papers. We extracted information on study design, GI symptom ascertainment method, demographics, and ASD diagnostic criteria. From a subset of studies, we extracted GI symptom estimates. Out of a possible 386 titles, 144 were included. The prevalence range for constipation was 4.3–45.5% (median 22%), for diarrhea was 2.3–75.6% (median 13.0%), and for any or more than one symptom was 4.2–96.8% (median 46.8%). GI symptoms differed significantly by age of individuals, primary goal of study, study design, study sample, and who reported symptoms ( P < .05). Due to small sample size, we were not able to test for associations between every GI symptom and study characteristic of interest, or examine associations between GI symptoms and intellectual or verbal disability. Studies used a broad range of methods to ascertain GI symptoms in ASD. GI symptoms varied widely across these studies, with significant differences by study characteristics. Our findings highlight the need for a reliable, valid GI assessment tool to be used consistently across studies of ASD. Autism Res 2018, 11: 24–36 . © 2017 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary: We reviewed studies having to do with autism spectrum disorder and the gastrointestinal system, dating back to 1980. We found that the median prevalence of constipation was 22.2%, diarrhea 13.0%, and any symptom 46.8%. All symptoms had a wide range of estimates across studies. GI symptoms were associated with characteristics of the study, including who measured the GI symptoms. We call for the development of a reliable and valid GI questionnaire for studies of ASD.

AI snapshot

Written from the paper’s full text.

TL;DR

This review of 144 ASD studies found a broad range of GI symptom ascertainment methods and widely varying prevalence estimates, with many estimates differing significantly by study characteristics. The authors call for a reliable, valid GI assessment tool for ASD populations.

Key findings

  • Across studies, prevalence ranges were 4.3–45.5% for constipation (median 22%), 2.3–75.6% for diarrhea (median 13.0%), and 4.2–96.8% for any or more than one GI symptom (median 46.8%).
  • GI symptom estimates differed significantly by age of participants, primary goal of study, study design, study sample, and who reported symptoms (p<0.05).
  • Most studies used questionnaires administered to parents/caregivers; of 119 questionnaire studies, 68 created their own instrument, and none of the five ASD-designed GI questionnaires had been formally validated.
  • Among 84 studies in the prevalence subset, 68 used questionnaires, 13 used medical records, and none used symptom diaries.

Methods

  • Literature review, not a formal systematic review, following many PRISMA best practices; PubMed search from 1/1/1980 to 1/31/2017 returned 386 titles, of which 144 studies met inclusion criteria.
  • Eligibility required at least ten individuals with ASD and measurement of GI symptoms or conditions; reviews, hypothesis papers, animal studies, and studies with Andrew Wakefield as coauthor were excluded.
  • From 144 studies, 84 qualified for the prevalence estimate subset; proportions for specific GI symptoms were summarized, and associations with study characteristics were tested using ANOVA, with p<0.05 considered significant.

Limitations

  • The paper states that only PubMed was used, so studies published in journals not available through PubMed are not reflected.
  • The paper states that many studies did not report GI symptom prevalence in subgroups such as individuals with intellectual disability or who are non-verbal, so differences across these groups could not be determined.
  • Evident from the text: the review is not a formal systematic review, and the included studies used heterogeneous, often unvalidated GI symptom measures, limiting comparability of prevalence estimates.

Model-written summary. Check it against the paper before relying on it.

Integrity signals

Registry

Crossref · 10.1002/aur.1854

Cites

39 of 39 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

0 of 16 cited sources checked · 0 supported · 0 flagged

  • Findingown data

    Of the 101 studies in the US, Canada, or UK, over half (51.5%) did not report the race/ethnicity composition of their study sample.

    “Of the 101 studies in the US, Canada, or UK, over half (51.5%) did not report the race/ethnicity composition of their study sample.”
    Quote in the paperNot a substantial claim
  • Findingnone given

    There is no standard approach to measuring GI symptoms in individuals with ASD.

    “There is no standard approach to measuring GI symptoms in individuals with ASD, despite postulated interactions.”
    Quote in the paperSubstantial claim
  • Findingown data

    Many GI symptom prevalence estimates were significantly associated with study characteristics.

    “In support of this, we found that many GI symptom prevalence estimates were significantly associated with study characteristics.”
    Quote in the paperSubstantial claim
  • Findingown data

    Among the 49 studies that did report race/ethnicity, 94.0% included exclusively white participants or a very small proportion of non-white participants.

    “Among the 49 studies that did report race/ethnicity, 94.0% of them included exclusively white participants or a very small proportion of participants were non-white.”
    Quote in the paperNot a substantial claim
  • Findingcitation

    Of the 8 studies that involved a physician in the ascertainment of GI symptoms, only one mentioned that the physician was a gastroenterology specialist.

    “Of the 8 studies that involved a physician in the ascertainment of GI symptoms, only one mentioned that the physician was a gastroenterology specialist (Gorrindo et al., 2012).”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Gorrindo et al., 2012

      Not checked in the free run.

  • May combine two claims. 25
  • The quote only partly states this claim. 2
  • Classified as probably not a substantial claim. 6

  • May combine two claims.

    Findingown data

    There were 62 case-control studies, 48 cross-sectional studies (15 with a comparison group), 25 experimental studies, 6 cohort studies, and 3 with mixed study designs.

    “There were 62 case-control studies, 48 cross-sectional studies, (15 of which included a comparison group), 25 experimental studies, 6 cohort studies, and 3 with mixed study designs.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Of the 144 studies, 61.8% were conducted in the United States or Canada, 15.3% in Europe, 6.9% in Asia, 8.3% in the United Kingdom, 5.6% in Oceania, 1.4% in Africa, and 0.7% in South America.

    “Of the 144 studies, 61.8% were conducted in the United States or Canada, 15.3% in Europe, 6.9% in Asia, with a smaller proportion in the United Kingdom (8.3%), Oceania (5.6%), Africa (1.4%), and South America (0.7%) (Table 1).”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    The source of study participants was clinic-based in 57 studies, population-based in 18 studies, both clinic- and population-based in 1 study, enriched-risk in 2 studies, and in 66 studies insufficient information was provided to determine the source population.

    “The source of study participants was clinic-based in 57 studies, population-based in 18 studies, both clinic- and population-based in 1 study, enriched-risk in 2 studies, and in 66 studies, insufficient information was provided to determine the source population.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    The primary goals of the studies were to assess relationships of GI symptoms with other variables (n=51), compare GI symptom estimates among groups (n=24), assess outcomes of experimental treatments (n=24), or other primary goal (n=42).

    “The primary goals of the studies were to: 1) assess the relationships of GI symptoms and conditions with any other variable (n=51); 2) compare GI symptom estimates among groups of participants (e.g. ASD, Developmental Delay, PDD-NOS) (n=24); 3) assess outcomes of experimental treatments (n=24); and 4) other primary goal (n=42).”
    Quote in the paperNot a substantial claim

  • The quote only partly states this claim.

    Findingown data

    The number of study participants across the 144 studies ranged from 10 to 4927 individuals (median 73).

    “The number of study participants ranged from 10 to 4927 individuals (median 73).”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Most studies required participants to meet DSM-IV criteria for Autistic Disorder, with or without Asperger's Disorder or PDD-NOS (n=73, 50.7%), or DSM-V criteria for Autism Spectrum Disorder (n=6, 4.2%).

    “Most studies required that participants meet DSM-IV criteria for Autistic Disorder, with or without including Asperger's Disorder or PDD-NOS (n=73, 50.7%), or DSM-V criteria for Autism Spectrum Disorder (n=6, 4.2%), and one earlier study used DSM-III-R (0.01%).”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Over half of the studies that used a questionnaire used their own approach, while the rest used a previously developed instrument.

    “Importantly, we found that over half of the studies that used a questionnaire used their own approach, while the rest used an instrument that had been previously developed.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Studies used the following methods to assess GI symptoms or diagnoses: 83 of 144 studies used questionnaires administered exclusively to parents or caregivers; 3 used questionnaires administered to either parents/caregivers or teachers; 6 used questionnaires administered to parents/caregivers or to the individuals with ASD themselves.

    “Studies used the following methods to assess GI symptoms or diagnoses: 83 of 144 studies used questionnaires administered exclusively to parents or caregivers; 3 used questionnaires administered to either parents/caregivers or teachers; 6 used questionnaires administered to parents/caregivers or to the individuals with ASD themselves (Table 2).”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Of the 119 studies that used a questionnaire, 68 created their own instrument, while 51 studies used or modified an existing instrument.

    “Of the 119 studies that used a questionnaire, 68 created their own instrument (i.e. a questionnaire never used before in other studies), while 51 studies used or modified an existing instrument.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    The questionnaires used most often were the Rome II (n=4) or III criteria (n=12), the Gastrointestinal Severity Index (Schneider) (n=5), the Autism Treatment Network Gastrointestinal Symptom Inventory (n=3), and the Bowel Symptom Questionnaire (Smith) (n=3).

    “The questionnaires that were used the most often were the Rome II (n=4) or III criteria (n=12), The Gastrointestinal Severity Index (Schneider) (Schneider et al., 2006) (n=5), the Autism Treatment Network Gastrointestinal Symptom Inventory (Mazurek et al., 2013) (n=3) and the Bowel Symptom Questionnaire (Smith) (Smith et al., 2009) (n=3) (Table 2).”
    Quote in the paperNot a substantial claim0 of 3 sources checked
    • cites Schneider et al., 2006

      Not checked in the free run.

    • cites Mazurek et al., 2013

      Not checked in the free run.

    • cites Smith et al., 2009

      Not checked in the free run.

  • May combine two claims.

    Findingown data

    Constipation differed significantly across study design types as well as type of study sample.

    “constipation differed significantly across study design types as well as type of study sample.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Eighteen studies (12.5%) did not clearly specify who reported the GI symptoms or diagnoses; 9 of these 18 studies used a questionnaire, although who filled out the questionnaire was not clear.

    “Eighteen studies (12.5%) did not clearly specify who reported the GI symptoms or diagnoses (Table 2); 9 of these 18 studies used a questionnaire, although who filled out the questionnaire was not clear.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Findingnone given

    The ATEC subscale provides no definitions of symptoms.

    “Further, no definitions of symptoms are provided.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Fifteen studies used medical records exclusively, and one study used claims data.

    “Fifteen studies used medical records exclusively. One study used claims data.”
    Quote in the paperNot a substantial claim

  • The quote only partly states this claim.

    Findingown data

    None of the existing instruments designed for ASD have been formally validated.

    “and none have been formally validated.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Across the 144 studies, participant ages ranged from <1 to 64 years, and the median age (median of medians) across studies was 6.7 years.

    “The ages of participants ranged from <1 to 64 years old. The median age within studies ranged from 4.5 to 36 years, and the median age (median of medians) across studies was 6.7 years (Table 1).”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Premisecitation

    Five questionnaires that query GI symptoms have been designed for the ASD population, but none have been formally assessed for validity.

    “to our knowledge none have been formally assessed for validity (Buie et al.,”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Buie et al., 2010

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductown data

    Information was extracted from each of 144 studies by one of two authors, both of whom examined a subset of the studies, and questions regarding any study were resolved together.

    “Information was extracted from each of 144 studies by one of two authors (CH & CN). Both authors examined a subset of the studies, and questions regarding any study were resolved together.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductown data

    The review followed many PRISMA best practices, including explicit search criteria, inclusion/exclusion criteria, standardized extraction, and resolution of extraction discrepancies across two reviewers.

    “However, we followed many of the best practices of PRISMA guidelines including explicit search criteria, inclusion/exclusion criteria, standardized extraction of the same fields, and resolution of extraction discrepancies across two reviewers.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationreasoning

    Diarrhea, constipation, and incontinence/bed-wetting make up only 5 of the 25 items in the ATEC Health/Physical/Behavior subscale, limiting its usefulness for assessing the breadth of GI symptoms and distress in this population.

    “However, diarrhea, constipation, and incontinence/bed-wetting make up only 5 of the 25 items in this subscale, limiting its usefulness for assessing the breadth of GI symptoms and distress in this population.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Premisecitation

    McElhanon et al.'s meta-analysis of 15 studies found that studies relied primarily on parental reports or chart reviews and used a wide variety of definitions of GI symptoms.

    “This study builds on McElhanon et al.'s meta-analysis of 15 studies which found that studies relied primarily on parental reports or chart reviews, and used a wide variety of definitions of GI symptoms (McElhanon et al., 2014).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites McElhanon et al., 2014

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    The need to rely on reporting by parents, the lack of standardization of the definition of specific symptoms, and the reliance by physicians on parental interpretation all contribute to inaccurate symptom measurement.

    “As noted in a 2006 review by van den Berg et al., the need to rely on reporting by parents, the lack of standardization of the definition of specific symptoms, as well as the reliance by physicians on parental interpretation, all contribute to the problem of inaccurate symptom measurement (Van Den Berg et al., 2006).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Van Den Berg et al., 2006

      Not checked in the free run.

  • May combine two claims.

    Interpretationreasoning

    The diversity in measurement approaches makes it difficult to derive an accurate epidemiologic estimate of GI symptoms and an understanding of the risk factors that contribute to ASD and GI symptoms.

    “This diversity in measurement approaches makes it difficult to derive an accurate epidemiologic estimate of GI symptoms and an understanding of the risk factors that contribute to ASD and GI symptoms.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Study design and conductown data

    Many studies did not specify the prevalence of GI symptoms in subgroups of their populations, such as individuals with an intellectual disability or who are non-verbal, so we were unable to determine how GI symptoms differed across these groups.

    “Secondly, since many studies did not specify the prevalence of GI symptoms in subgroups of their populations, such as individuals with an intellectual disability or who are non-verbal, we were unable to determine how GI symptoms differed across these groups.”
    Quote in the paperSubstantial claim

  • Classified as probably not a substantial claim. May combine two claims.

    Interpretationnone given

    This is the first literature review to assess GI symptoms in studies of ASD reaching back to 1980 and to examine study design features, particularly approaches to measurement of GI symptoms, for associations with GI symptom prevalence estimates.

    “To our knowledge, this is the first literature review to assess GI symptoms in studies of ASD reaching back to 1980 and to examine study design features, particularly approaches to measurement of GI symptoms, for associations with GI symptom prevalence estimates.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Interpretationcitation

    Our review confirms that the wide variability in prevalence estimates in ASD may be due to factors including the definition and type of GI symptoms, the sample of children, and the method by which the symptoms are investigated.

    “Our review also confirms Dalton et al.'s hypothesis that the wide variability in prevalence estimates in ASD may be due to factors including the definition and type of GI symptoms, the sample of children, and the method by which the symptoms are investigated (Dalton et al., 2014).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Dalton et al., 2014

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S2 (checkable), S4 (based). May combine two claims.

    Interpretationnone given

    A GI questionnaire represents a rapid, feasible way to assess symptoms, and could be combined with physician evaluation and diagnostic tests when relevant to a specific condition of interest in particular settings.

    “However, A GI questionnaire represents a rapid, feasible way to assess symptoms, and could be combined with physician evaluation and diagnostic tests when relevant to a specific condition of interest in particular settings.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim. May combine two claims.

    Interpretationreasoning

    Behaviors and co-morbid conditions alone may not allow a questionnaire to correctly diagnose a specific GI disorder such as reflux, Crohn's disease, ulcers, or tight rectal sphincter, but may indicate the need for a more comprehensive evaluation including endoscopy or colonoscopy when clinically indicated.

    “Although these behaviors and co-morbid conditions alone may not allow a questionnaire to be able to correctly diagnose a specific GI disorder such as reflux, Crohn's disease, ulcers, or tight rectal sphincter, it may indicate the need for a more comprehensive evaluation including endoscopy or colonoscopy when clinically indicated.”
    Quote in the paperSubstantial claim
28 of 28

  • The paper relies on this without support.

    The ASD population has been a primary target of complementary alternative therapies that aim to heal the gut and prevent or treat ASD, as well as research attempting to prove vaccines cause ASD through a damaged gastrointestinal system.

    “For this review, we focused on ASD, since this population has been a primary target of complementary alternative therapies that aim to heal the gut and prevent or treat ASD, as well as research attempting to prove vaccines cause ASD through a damaged gastrointestinal system.”

  • The paper relies on this without support.

    The ASD population is especially vulnerable to potentially unsafe, ineffective interventions.

    “The implications of not having a reliable and valid assessment tool for GI symptoms are especially critical for the ASD population given the vulnerability of this population to potentially unsafe, ineffective interventions.”
2 of 2

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

Each contradiction between two passages listed here was confirmed by an independent check.

  • DSM-III-R study percentage is incorrect

    Minor

    One study out of 144 is approximately 0.7%, not 0.01%.

    Reported 0.01 · recomputed 0.694444

  • Conflicting percentages for studies missing race/ethnicity data

    Minor

    The paper first says 51.5% of the 101 US, Canadian, or UK studies did not report race/ethnicity, but later gives 48% for the same group.

2 of 2

Cites

1 retracted

Flagged first, then by citations

Research works printed but not linked: 1

  1. Autism Network, 2005, GI symptom inventory questionnaire, vers. 3.0

Cited by

Sorted by citations

Related

Authors
Holingue, C., Newill, C., Lee, L., Pasricha, P. J., & Daniele Fallin, M.
Affiliations
  • Johns Hopkins University (US)
  • Department of Mental Health Johns Hopkins Bloomberg School of Public Health Baltimore MD
ORCID
Venue
Autism Research
Publisher
Wiley
Published
2017-08-30
Volume
11
Issue
1
Pages
24-36
ISSN
  • 1939-3792 (ISSN-L)
  • 1939-3806
DOI
10.1002/aur.1854
PMC
PMC5773354
OpenAlex
W2752524456
Semantic Scholar
394be4418b8a14b34b88c219f05c49612396a08c
Cited by
296
References
38
Citations by year
2026: 29 · 2025: 39 · 2024: 42 · 2023: 34 · 2022: 40 · 2021: 41 · 2020: 27 · 2019: 29 · 2018: 14 · 2017: 1
FWCI
2.17
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Autism Research (publishedVersion)
  • PubMed (publishedVersion)
  • Europe PMC (PubMed Central) (acceptedVersion)
  • PubMed Central (acceptedVersion)
Funders
National Institute of Mental Health (5T32MH014592‐39)
Topics
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Health Sciences › Medicine › Gastroenterology › Gastrointestinal motility and disorders
  • Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
Keywords
autism spectrum disorder, gastrointestinal symptoms, constipation, diarrhea, prevalence, reliability and validity
MeSH terms
Autism Spectrum Disorder, Constipation, Diarrhea, Female, Gastrointestinal Diseases, Humans, Male, Surveys and Questionnaires, Comorbidity, Prevalence

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