Open Journal of Pediatrics, 2011, 1, 51-63
doi:10.4236/ojped.2011.14014 Published Online December 2011 (http://www.SciRP.org/journal/ojped/
OJPed
)
Published Online December 2011 in SciRes. http://www.scirp.org/journal/OJPed
Feeding problems and GI dysfunction in children with
asperger syndrome or pervasive developmental disorder
not otherwise specified; comparison with their siblings
Vahe Badalyan, Richard H. Schwartz
Department of Gastroenterology, Nutrition and Hepatology CNMC, Washington DC, USA.
Email: vbadalyan@gmail.com
Received 2 October 2011; revised 13 November 2011; accepted 24 November 2011.
ABSTRACT
Objective: There are few previously published studies
of feeding problems and/or gastrointestinal dysfunc-
tion among children with Asperger syndrome (AS) or
Pervasive Developmental Disorder (PDD-NOS), com-
pared to sibling controls. Study Design: On-line par-
ent autism groups 90% from North America. Statis-
tical analysis: Chi square and binomial logistic re-
gression statistical analysis Results: Completed sur-
veys were received for 64 children with AS, 44 with
PDD-NOS, total = 108), and 82 normal sibling mat-
ches. Children with high-functioning autism had
higher likelihood of frequent (>50% of the time)
problematic feeding behaviors and gastrointestinal
dysfunction, such as unusual food preferences (OR
23.9, 95% CI 7.3 - 78.7), insistence on unusual food
presentation (OR 5.8, 95% CI 1.8 - 18.4), and poor
mealtime social behavior (OR 16.1, 95% CI 4.1 -
64.1). These children also had higher odds of frequent
constipation (OR 8.3, 95% CI 2.2 - 31.9) and fecal
incontinence (OR 5.4, 95% CI 1.1 - 27.3). Nine chil-
dren in AS/PDD-NOS group (4%) were believed by
parent to have celiac disease (3% or 1% had intesti-
nal biopsy), compared to 2 in control group. Conclu-
sion: 57% of the AS/PDD-NOS group had frequent
unusual food preferences vs. 5% of controls. Forty-
eight percent of children with AS/PDD-NOS had
frequent dislikes of new foods, compared to 6% of
controls. For symptoms of specific gastrointestinal
dysfunction, children with AS/PDD-NOS had higher
prevalence of frequent constipation (30% vs. 4%)
and fecal incontinence (22% vs. 2 %).
Keywords: Asperger Syndrome; PDD-NOS, Feeding
Behaviors; Gastrointestinal Dysfunction; Food Prefer-
ences
1. INTRODUCTION
An estimated 1 in 110 children in the US and Canada are
estimated to have a diagnosis of Autism Spectrum dis-
order and these rates have been increasing in the past
decade [1]. Autism spectrum disorder (ASD), is a het-
erogeneous group of neuro-developmental disorders that
the Diagnostic and Statistical Manual IV-R currently
subdivides into three subgroups: Asperger syndrome,
pervasive developmental disorder-not otherwise speci-
fied (PDD-NOS) which is the most common and has the
least precise diagnostic criteria [2], and classical autism
[3]. Children with PDD-NOS almost universally have
impairments in social reciprocity and communication,
without significant repetitive and stereotyped behaviors
[4]. Compared to classic autism, they have comparably se-
vere but more circumscribed social communication dif-
ficulties with fewer non-social features such as sensory
integration or feeding problems. The current draft guide-
lines of the upcoming DSM-V will mandate repetitive
and stereotyped behaviors in addition to major defects in
language and communication and socialization [4].
Previous publications have documented increased
rates of feeding problems and gastrointestinal dysfunc-
tion among children with ASD. Although opinions differ,
a majority of published studies on the subject of child-
hood autism and gastrointestinal problems report higher
rates of feeding problems in children with ASD com-
pared to controls [5-13]. The Brief Autism Mealtime
Behavior Inventory (BAMBI) has been developed to
evaluate the mealtime behavior of children with autism
[14]. The BAMBI demonstrated good internal consis-
tency, high test-re-test reliability.
A recent study comparing 48 children (3 to 12 years
old) with ASD, to their matched siblings found that the
ASD group had a mean of 13 eating problems, with lack
of food variety predomination while the sibling group
had a mean of 5 eating problems [11]. Feeding problems
V. Badalyan et al. / Open Journal of Pediatrics 1 (2011) 51-63
52
included inflexible food preferences (based on food tex-
ture, color, smell, presentation, limited variety diets, and
specific utensil requirements), oral-motor dyspraxia and
disruptive mealtime behaviors, among others. In a sur-
vey of 138 children with autism and 298 typically de-
veloping children, Schreck and colleagues (2005), found
that children with autism had higher rates of refusing
most foods, requiring specific utensils, requiring par-
ticular food presentation, accepting only pureed or low
textured foods, and eating a narrow variety of foods [15].
Smith et al also found that children with ASD had a limi-
ted repertoire of foods (35% vs. 3%) [8]. Emond et al.
(2010) found that caregivers of autistic children reported
significantly more frequently feeding slow during early
infancy, parent having difficulties feeding the child, and
the child being a picky eater [16].
In 2011, investigators from the University of Califor-
nia reported that 249 children on the autism spectrum
had significantly more GI problems (42%) than 163 sib-
lings (12%). This study was registry-based and the in-
vestigators conducted in-home structured medical his-
tory interviews by parent recall. Those children with
classic autism had increased odds of having GI problems
compared to less severely affected children with ASD
[12].
The most common symptoms of GI dysfunction in-
clude abdominal pain, dysphagia, gastrointestinal reflux
(GER), constipation, withholding stool, and fecal incon-
tinence [15]. Constipation rates among the children with
autism was higher than control groups in the studies of
Melmed [17], Taylor [18], Afzal [19], Molloy [7], and
Smith [8].
In contradistinction, analysis of a database of 211,480
children from the United Kingdom found no difference
in gastrointestinal complaints in 96 children diagnosed
with ASD compared with 449 nested controls [20]. In-
vestigators from the Mayo Clinic also found no signi-
ficant associations between autism case status and
overall incidence of GI dysfunction [21]. An Australian
study concluded that children with early gastrointestinal
problems were no more likely to be represented in the
upper quartile of scores on the Autism Spectrum Quo-
tient (AQ) scales [4].
The purpose of this study was to compare the preva-
lence of feeding difficulties and gastrointestinal dys-
function in children with Asperger syndrome and Perva-
sive Developmental Disorder (so-called high-functioning
autism) and their typically developing siblings. Our in-
tention was to use sibling controls in order to control for
the influence of social environment.
2. STUDY DESIGN AND PATIENT
POPULATION
This was a cross-sectional online survey conducted from
February 2009 through April 2009. The lengthy survey
instrument included 41 questions pertaining to demo-
graphics, family income, developmental milestones,
feeding behaviors and odd mannerisms, food preferences,
and GI dysfunction at the time when the child was be-
tween ages 3 and 12 (see appendix). The survey con-
tained two almost identical parts, one for the child with
AS or PDD-NOS and one for the typically-developing
sibling. Both parts contained the same 41 questions with
the exception of the question pertaining to ASD diagno-
sis (only available in ASD part). The survey was se-
curely posted online at a commercial survey website
http://www.formsite.com (Vroman systems Inc, Chicago,
IL). At no point was the survey tool sold and no profits
were generated from using the survey tool. The authors
bore all the costs associated with publishing the survey
online.
The link to the survey was e-mailed repeatedly to na-
tional, regional, state, and large city autism organizations
and support groups. Parents were asked to complete the
survey if they had a child with AS or PDD-NOS. If a
parent had several children with ASD, he/she was asked
to complete the survey separately for each ASD child.
The survey was confidential and anonymous. The survey
link contained an introductory statement about the pur-
pose of the survey, voluntary participation, risks and
benefits, and contacts of investigators and IRB officer.
The drafts of the survey were pre-tested on 10 parents
of ASD children from a pediatric practice in Vienna, VA,
and reviewed by local specialists in developmental/be-
havioral pediatrics, and pediatric gastroenterology. The
survey protocol was approved without full formal review
by Inova Fairfax Hospital Institutional Review Board.
2.1. Definitions Used for This Study
Children were defined as having Asperger syndrome or
PDD-NOS if the parents indicated so in the survey and,
if the diagnosis was made by a primary care or pediatric
sub-specialist physician or psychologist.
Definitions used in this study: We categorized the
frequencies of feeding behaviors and gastrointestinal
problems into “Never”, “Rarely” (less than 10% of the
time), “Sometimes” (10% - 50% of the time), and “Of-
ten” (more than 50% of the time).
“Diarrhea” was defined as passing at least three wa-
tery unformed stools in a day. “Constipation” was de-
fined as hard or painful stools passed less than three
times per week.
“Pica” was defined as the ingestion of unusual non-
food items such as dirt or string.
2.2. Statistical Methods
Data was analyzed using SPSS version 18 (SPSS Inc.
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OJPed
Chicago, Illinois). Descriptive statistics (means and
standard deviations) were used for continuous variables,
and proportions were used for categorical variables.
Fischer’s exact test was used to compare dichotomous
variables pertaining to feeding and gastrointestinal dys-
function between the groups. To control for influences of
variables pertaining to age, gender, degree of develop-
mental impairment, medical problems, country, food
allergies, and dietary restrictions, binomial logistical
regression models were created with these variables be-
ing included as independent variables, along with the
autistic spectrum disorder variable (case vs. control).
The variables pertaining to feeding and gastrointestinal
dysfunction were included one by one in the regression
model as a dependent variable.
3. RESULTS
Surveys were completed for 64 children with Asperger
Syndrome, 44 children with PDD-NOS (combined total
= 108), and 82 of their typically-developing siblings. All
participants were between the ages of 3 and 12 years.
Males comprised 88% of the combined (AS/PDD-NOS)
group and 50% of the control group (p < 0.001). Mean
ages at the time of the survey were 7.9 years and 7.7
years in the ASD and control groups, respectively (p =
0.54, NS) (Table 1).
U.S. respondents comprised 85% of the ASPDD-NOS
group and 78% of the control group (p = 0.25, NS). The
highest numbers of U.S. respondents came from Virginia,
Kansas, Texas, Indiana, and Missouri. Fifteen percent of
completed responses came from Canada. A bare majority
(52%) of the parent responders reported that their
household income in 2008 exceeded $75,000 per year (p
= 0.84, NS). Approximately 5% of the control group was
enrolled in Medicaid.
Cross-tabulations of children with Asperger syndrome
and PDD-NOS showed that the two groups were, in
general, similar in terms of most developmental mile-
stones, food preferences and gastrointestinal dysfunction
(chi square p values >0.05) (Tables 2 and 3). There were
some specific developmental milestone differences be-
tween children with AS and those with PDD-NOS. The
mean age at the time of diagnosis was 4-years for chil-
dren with PDD-NOS versus 6.2 years for children with
AS (independent samples t-test, p value < 0.001). Sixty-
seven percent of PDD-NOS group versus 86% of chil-
dren in the AS group were toilet trained by age of 4 (Chi
square P value = 0.029). Acquisition of language by the
age of 4 years was achieved by 55% of PDD-NOS group
and by 88% of Asperger group (Chi-square P value <
0.001) (Table 2).
Because of the small number of differences for feed-
ing problems or GI dysfunction, children with AS or
PDD-NOS were combined into a single combined study
group for subsequent analysis. Their typically-develop-
ing siblings were also combined into a single control
group.
There were major differences between children with
the combined AS/PDD-NOS and sibling controls in re-
portedly having any major developmental problem (AS/
PDD-NOS = 200 [96%] compared to 9 [6%] in control
group, p < 0.000, OR = 337.8, CI = 114 - 1000.8), disor-
tions or paucity of social play (AS/PDD-NOS = 103 vs
controls = 2, p < 0.000, OR = 42.9, CI = 5.3 - 349.9),
odd routines (AS/PDD-NOS = 139 vs control group = 3,
p < 0.000, OR = 107.4, CI = 31.3 - 369.1), never spoke
by age 4 years (AS/PDD-NOS = 40 vs controls = 1, p <
0.000, OR = 42.9, CI = 5.3 - 349.9) (Table 3).
The combined AS/PDD-NOS group differed signify-
cantly from the control group for frequent disruptive
feeding problems. These included obsessional food pre-
ferences (i.e. insistence on: a. specific food colors,
shapes, or textures, insistence on eating food with spe-
cific utensils/dishes, fear of new foods, and disruptive
family mealtime behavior, (Ta b l e 4). Unusual food pre-
ference (frequency > 50% of time) was present for 127
Table 1. Study participants.
Control AS/PDD Combined group Significant
n = 82 % n = 108 %
Age 7.7 7.9 p = 0.54
St dev 2.8 2.7
Male gender 41 50% 95 88% p < 0.001
Live in USA 64 78% 92 85% p = 0.25
Family income > $75000/year 44 54% 55 51% p = 0.84
Developmental Milestones Spoke by age 4 79 96% 80 74% p < 0.001
Spoon trained by age 3 79 96% 83 77% p < 0.001
Toilet trained by age 4 77 94% 83 77% p < 0.001
V. Badalyan et al. / Open Journal of Pediatrics 1 (2011) 51-63
54
Table 2. Occurrence of select behaviors and GI symptoms that were frequent.
GI symptoms Asperger (n = 134) PDD-NOS (n = 71)Combined Asperger and
PDD-NOS (n = 6) Controls (n = 160) Chi-Square P value
vomiting 12 2 2 5 p = 0.002
% 9.0% 2.8% 33.3% 3.1%
diarrhea 10 12 2 4 <0.001
% 7.5% 16.9% 33.3% 2.5%
constipation 35 25 2 9 <0.001
% 26.1% 35.2% 33.3% 5.6%
soiling 27 21 5 7 <0.001
% 20.1% 29.6% 83.3% 4.4%
difficulty swallowing 6 11 2 4 <0.001
% 4.5% 15.5% 33.3% 2.5%
reflux 17 10 3 11 p = 0.004
% 12.7% 14.1% 50.0% 6.9%
abdominal pain 11 5 2 6 p = 0.02
% 8.2% 7.0% 33.3% 3.8%
failure to thrive 31 17 3 10 <0.001
% 23.3% 25.0% 50.0% 6.4%
any diet restriction 30 19 3 12 <0.001
22.4% 26.8% 50.0% 7.5%
any food allergy 30 18 4 21 <0.002
22.4% 25.4% 66.7% 13.1%
Table 3. Deviation from normal developmental milestones.
AS/PDD-NOS Controls
n = 211 % n = 160 %
Fischer’s
exact test
Logistic regression odds
ratio (95% CI)
No Social Play 103 49% 2 1% 0.000 53.9 (12.8 - 227.2)
Odd Mannerisms 174 82% 4 3% 0.000 159.4 (52.5 - 483.9)
Odd Routines 139 66% 3 2% 0.000 107.4 (31.3 - 369.1)
Any Major Developmental Problem 200 95% 9 6% 0.000 337.8 (114 - 1000.8)
Mental Disability 6 3% 2 1% 0.474 1.3 (0.2 - 8.7)
or 60% of the AS/PDD-NOS group vs. 9 or 6% of the
control group (p < 0.001, OR = 38.4, CI = 15.4 - 95.8)
(Table 4). Disruptive family mealtime behavior was
noted for 74 or 35% of the AS/PDD-NOS group vs. 7 or
4% or the control group (p < 0.001, OR = 9.9, CI = 4 -
24.7).
The combined AS/PDD-NOS group differed signifi-
cantly from the control grou by the prevalence of se- p
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V. Badalyan et al. / Open Journal of Pediatrics 1 (2011) 51-63 55
Table 4. Abnormal Feeding behaviors, frequency >50% of the time.
Frequent (>50%) occurrence of select
behaviors and gastrointestinal symptoms Asperger
(n = 134)
PDD-NOS
(n = 71)
Combined Asperger and
PDD-NOS (n = 6)
Controls
(n = 160)
Chi-Square P
value
unusual food preferences 76 47 4 6 <0.001
% 56.7% 66.2% 66.7% 3.8%
insistence on using utensils 32 18 2 9 <0.001
% 23.9% 25.4% 33.3% 5.6%
dislike of new foods 62 42 5 9 <0.001
% 46.3% 59.2% 83.3% 5.6%
fear of new foods 73 50 3 20 <0.001
% 54.5% 70.4% 50.0% 12.5%
eating nonfood items (Pica) 12 9 2 2 <0.001
% 9.0% 12.7% 33.3% 1.3%
Disruptive family mealtime 41 29 4 7 <0.001
behavior 30.6% 40.8% 66.7% 4.4%
Disruptive school mealtime behavior 14 12 3 1 <0.001
% 10.4% 16.9% 50.0% .6%
unusual posturing during mealtime 24 9 2 5 <0.001
% 17.9% 12.7% 33.3% 3.1%
oral motor problems 11 11 3 4 <0.001
% 8.2% 15.5% 50.0% 2.5%
lected symptoms of frequent feediang behavior problems
(Tab le 5) and GI dysfunction (Tabl e 6 ). ASD chil- dren
often had higher prevalence of (frequency >50% of the
time) constipation (30% vs. 4%, p < 0.001, OR = 8.1, CI
= 3.5 - 19), soiling (22% vs. 2%, p < 0.001, OR = 6.7, CI
= 2.7 - 17), and failure to thrive (22% vs. 7%, p < 0.001,
OR = 4.5, CI = 2.1 - 9.4). Higher proportions of ASD
children were or had been on a restrictive diet (24%)
compared to the controls (9%) (p < 0.006).). Regression
models additionally revealed that having been on at least
one restrictive diet was associated with increased the
odds of constipation (OR = 3.38, CI = 1.14 - 10.04, p =
0.029).
There were no significant differences in abdominal
pain, reflux, or other gastrointestinal pathology between
the two study groups (Table 6).
Duration of feeding problems: When ASD or control
children exhibited unusual mealtime preferences and
behaviors; these mostly were long term (lasted >6
months).
4. DISCUSSION
In accord with several previous studies, our study re-
veals important new information about the high preva-
lence, frequency and duration of feeding problems,
mealtime misbehaviors, and GI dysfunction in children
with Asperger syndrome and PDD-NOS (ASD). The
study design addresses and cures some of the criticism
of previous published studies of gastrointestinal dys-
function in children with autism. This manuscript con-
tains information only about AS and PDD-NOS and ex-
cludes the large category of classic autism. Parents of
children with ASD are often accurate in diagnosing au-
tism based on Internet-implemented parent report [22].
We accepted only children who had diagnostic criteria
for AS or PDD-NOS outlined by the DSM-IV-R manual.
We excluded from analysis all survey responses in which
the diagnosis of AS or PDD-NOS was not made by pro-
fessionals (see Survey instrument in appendix). We did
not obtain verification of the diagnosis of AS or PDD-
NOS by independent review of the child’s medical re-
cords or by administration of standardized diagnostic
tests for AS or PDD-NOS.
Is the diagnosis of AS or PDD-NOS accurate? Should
the diagnosis for a substantial percentage of participants
with ASD be erroneous, we are at a loss to account for
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Table 5. Frequent feeding/behavior problems during meals.
Children with ASDControls
Feeding Problems/Behavior
n = 211 % n = 160%
Fischer’s
exact test
Logistic regression odds
ratio (95% CI) P
Unusual food preferences 127 60% 6 4% 0.000 38.4 (15.4 - 95.8) 0.000
Dislike of new foods 109 52% 9 6% 0.000 22.2 (9.4 - 52.8) 0.000
Fear of new foods 126 60% 20 13% 0.000 11.3 (6.1 - 21) 0.000
Eating non-food items (Pica) 23 11% 2 1% 0.000 19 (2.4 - 152) 0.006
Disruptive family meal-time 74 35% 7 4% 0.000 9.9 (4 - 24.7) 0.000
behaviors
Unusual posturing & meals 35 17% 5 3% 0.000 7.8 (2.5 - 23.7) 0.000
Oral-motor problems 25 12% 4 3% 0.001 5.7 (1.5 - 21) 0.009
Table 6. Frequent occurrence (<50% of time) of GI dysfunction.
Children with ASDControls
Gastrointestinal Symptom
n = 211 % n = 160%
Fischer’s
exact test
Logistic regression odds
ratio (95 % CI) P
Constipation 62 29% 9 6% 0.000 8.1 (3.5 - 19) 0.000
Soiling 53 25% 7 4% 0.000 6.7 (2.7 - 17) 0.000
Vomiting 16 8% 5 3% 0.073 1.9 (0.5 - 6.9) 0.305
Diarrhea 24 11% 4 3% 0.001 3.9 (1 - 14.8) 0.043
Abdominal Pain 18 9% 6 4% 0.087 2 (0.7 - 6.3) 0.220
Failure To Thrive 51 24% 10 6% 0.000 4.5 (2.1 - 9.4) 0.000
Any Diet Restriction 52 25% 12 8% 0.000 3.1 (1.4 - 7.1) 0.006
Any Food Allergy 52 25% 21 13% 0.006 2.4 (1.2 - 4.5) 0.009
Celiac Disease 9 4% 2 1% 0.703 2.1 (0.2-19)
the large differences between subjects and sibling con-
trols in gender ratio, achievement of developmental mi-
lestones, feeding problems, and gastrointestinal com-
plaints.
Strengths of this survey study include: 1) posting the
survey on line in a parallel, split-screed format with
questions about children 3 - 12-years old with AS or
PDD-NOS on the left side of the split screen, and ques-
tions relating to the sibling control on the right side; 2)
the wide geographic distribution (no state contributed
more than 30% of the U.S. total) and responses from a
large number of small towns and cities; 3) Canadian
participation; 4) sibling controls; 5) specific develop-
mental and social milestones, and data collection detail-
ing frequency and duration of mealtime feeding prob-
lems and GI dysfunction.
Self-criticism of survey methodology: We excluded
parents who are not members of ASD support groups.
We admittedly captured respondents who express strong
opinions on the subject, respondents with high socio-
economic status, and those who are computer literate.
This age range (3 - 12-year old) was selected because
based on our assumptions that: 1) high-functioning au-
tism is infrequently diagnosed before the age of 3, 2)
feeding patterns and behaviors of children frequently
mature after age three years and tend to remain relatively
stable until adolescence, 3) eating patterns of children
over 12-years are difficult to monitor due to significant
amount of time spent outside home.
The survey instrument was developed based on our
review of the literature and our own clinical experiences,
as well as using comments and suggestions from parents
and developmental pediatricians. We did not undertake
formal testing of the survey instrument to assess its con-
struct validity and reliability.
The mean age of diagnosis of children with PDD-
NOS (4.4 years), was significantly younger than the
mean age at diagnosis of the Asperger Syndrome group
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V. Badalyan et al. / Open Journal of Pediatrics 1 (2011) 51-63 57
(7.7 years). This may not be a weakness of the study.
Children with PDD-NOS have many more deficits in
language and communication and the delay in language
acquisition attracts the attention of parent, extended
family, and physician. The diagnosis of Asperger Syn-
drome is usually made later than that of PDD-NOS be-
cause language delay is not so severe.
We did not include a formal standardized diagnostic
test for Asperger syndrome to keep the time to complete
the questionnaire relatively short.
In agreement with results of our study, Olmstead
County children with ASD were more likely to manifest
feeding issues, food selectivity and constipation [21]. In
that study, as in ours, there was no evidence of an in-
crease in celiac disease in ASD children compared to the
control group. There are no data, however, to ascertain
whether the study group in the Olmstead county Minne-
sota, study had acute, chronic, or some combination of
GI dysfunction [21]. We also do not know about the spe-
cifics of “strange feeding issues and/or food selectivity”
in that study.
In our survey, more than 52 children (25%) in the
AS/PDD-NOS group had been on (or currently are on)
restricted diets, most often, casein-free or gluten-free, (p
< 0.001) compared to the sibling control group (OR =
3.1, CI = 1.4 - 7.1). Only 1% of those children on a glu-
ten-free diet had a biopsy-proven diagnosis of celiac
disease. A multidisciplinary panel of experts recently
reviewed the medical literature on the diagnostic evalua-
tion and management of GI problems in children with
ASD [23]. Statement 12 of their consensus notes: “avail-
able research data do not support the use of a casein-free
diet, a gluten-free diet, or combined gluten-free, casein-
free (GFCF) diet as a primary treatment for individuals
with ASDs.”
5. CONCLUSIONS
In a North American on-line survey of many parent
support groups for ASD children, children age 3 - 12
years with Asperger syndrome and PDD-NOS have a
higher prevalence of abnormal feeding behaviors and
gastrointestinal dysfunction compared to their non-ASD
siblings. Asperger and PDD-NOS groups were similar in
the number and frequency and duration of feeding prob-
lems, disruptive mealtime misbehavior, and GI dysfunc-
tion.
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[10] Kodak, T. and Piazza, C.C. (2008) Assessment and be-
havioral treatment of feeding and sleeping disorders in
children with autism spectrum disorders. Child & Ado-
lescent Psychiatric Clinics of North America, 17 , 887-
890. doi:10.1016/j.chc.2008.06.005
[11] Nadon, G., Feldman, D.E., Dunn, W. and Gisel, E. (2011)
Mealtime problems in children with autism spectrum
disorder and their typically developing siblings: A com-
parison study. Autism, 15, 98-113.
doi:10.1177/1362361309348943
[12] Wang, L.W., Tancredi, D.J. and Thomas, D.W. (2011)
The prevalence of gastrointestinal problems in children
across the United States with autism spectrum disorders
from families with multiple affected members. Journal of
Developmental & Behavioral Pediatrics, 32, 351-360.
doi:10.1097/DBP.0b013e31821bd06a
[13] Provost, B., Crowe, T.K., Osbourn, P.L., McClain, C. and
Skipper, B.J. (2010) Mealtime behaviors of preschool
children: Comparison of children with autism spectrum
disorder and children with typical development. Physical
& Occupational Therapy in Pediatrics, 30, 220-233.
doi:10.3109/01942631003757669
[14] Lukens, C.T. and Linsheid, T.R. (2008) Development and
validation of an inventory to assess mealtime behavior
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[15] Schreck, K.A. and Williams, K. (2006) Food preferences
and factors influencing food selectivity for children with
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doi:10.1016/j.ridd.2005.03.005
[16] Emond, A., Emmett, P., Steer, C. and Golding, J. (2010)
Feeding symptoms, dietary patterns, and growth in young
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[17] Melmed, R.D., Schneider, C.K. and Fabes, R.A. (2000)
Metabolic markers and gastrointestinal symptoms in
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Pediatric Gastroenterology and Nutrition, 31, S31-32.
[18] Taylor, B., Miller, E., Lingam,R., Andrews, N., Simmons,
A. and Stowe, J. (2002) Measles, mumps, and rubella
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[19] Afzal, N., Murch, S., Thirrupathy, K., et al. (2003) Con-
stipation with acquired megarectum in children with au-
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[20] Black, C., Kaye, J.A. and Jick, H. (2002) Relation of
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[21] Ibrahim, S.H., Voigt, R.G., Katusic, S.K., et al. (2009)
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[22] Lee, H., Marvin, A.R., Watson, T., et al . (2010) Accuracy
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[23] Buie, T., Campbell, D.B., Fuchs, G.J., Furuta, G.T., Levy,
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doi:10.1542/peds.2009-1878C
V. Badalyan et al. / Open Journal of Pediatrics 1 (2011) 51-63 59
APPENDIX
SURVEY INSTRUMENT
**SURVEY OF FEEDING AND OTHER DIGESTIVE PROBLEMS IN CHILDREN WIT H AUTISM
SPECTRUM DISORDERS
By filling out the following survey, you can help pediatricians and other health professionals learn more about certain
problems in children with autism spectrum disorders (ASDs). Such problems include unusual food preferences; aver-
sion to certain food colors, textures, and types; ingestion of non-food items; very restricted choices of foods; special
diets; sensory processing disorders; oral-motor swallowing problems; vomiting, diarrhea, or constipation; and symp-
toms of gastroesophageal reflux (GERD) and its complications, such as erosive esophagitis, and food allergies.
Questions in Column “A” pertain to your child with ASD when he/she was ages 3 - 12 years, even if he/she is older
now. In Column “B”, we ask the same questions for a sibling of your ASD child, closest to him/her in age. Please check
the applicable box below and follow the instructions.
I have at least one child with ASD and at least one child who is ASD-free Complete both columns “A” and “B”
I have at least one child with ASD, and no children who are ASD-free Complete column “A” only
I have no children with ASD, and at least one child who is ASD-free Complete column “B” only
Please FILL IN the blanks or CHECK the best choice of the following questions:
Column A
Child with Autistm Spectrum Disorder
Column B
Child without Autism Spectrum Disorder
(control child)
Please provide the last 4 digits of your
phone number for tracking purposes. ___ ___ ___ ___ ___ ___ ___ ___
City and state of your home
Current age and gender of your child ____years Male Female ____years Male Female
What is your child’s diagnosis?
(Please check all that apply)
Autism
Pervasive developmental disorder, NOS
Sensory integration disorder
Asperger syndrome
Static encephalopathy
Other (please specify) _______
Child without Autistic Spectrum Disorder
Proceed to the next question
Age at the time of diagnosis _____________ years Child without Autistic Spectrum Disorder
Proceed to the next question
Was the diagnosis made by a child
neurologist, child psychiatrist, psy-
chologist, general pediatrician, family
physician, or developmental pediatric-
cian?
Yes
No (who diagnosed your child?
____________ )
Uncertain
Child without Autistic Spectrum Disorder
Proceed to the next question
Check all that apply to your child
Met developmental milestones
Speaking and understanding appropriately by 4
years of age.
Never spoke fluently
Difficulty with sustained meaningful interactive
play with same-age child by the age of 4 years
Unusual mannerisms or demanding same rou-
tine over and over
a. Met developmental milestones
b. Speaking and understanding appropriately by
4 years of age.
c. Never spoke fluently
d. Difficulty with sustained meaningful interac-
tive play with same-age child by the age of 4
years
e. Unusual mannerisms or demanding same
routine over and over
Does (did) your child have any of the
following neurological/developmental/
genetic conditions? (Please check all
that apply)
Seizures
Down syndrome
Hearing disability
Mental retardation
Other (please specify) _________
Not applicable
Seizures
Down syndrome
Hearing disability
Mental retardation
Other (please specify) _________
Not applicable
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60
Does (did) your child have any other
medical conditions?
Yes (please specify
____________________)
No
Uncertain
a. Yes (please specify ____________________)
b. No
c. Uncertain
At what age did your child learn to use
spoon/fork? ___ years not yet using spoon / fork ___ years not yet using spoon / fork
Restricted diet at ages 3 - 12 years?
(Please check all that apply)
a. Gluten-free
b. Soy-free
c. Dairy (casein)-
free
d. Carbohydrate diet
e. Candida diet
f. Feingold diet
g. Rotation diet
h. No
i. Uncertain
a. Gluten-free
b. Soy-free
c. Dairy (casein)-
free
d. Carbohydrate diet
e. Candida diet
f. Feingold diet
g. Rotation diet
h. No
i. Uncertain
Duration of typical dinnertime with
family at ages 3 - 12 years?
a. 30 minutes
b. 31 - 45 minutes
c. 46 - 60 minutes
d. 61 - 90 minutes
e. >90 minutes
a. 30 minutes
b. 31 - 45 minutes
c. 46 - 60 minutes
d. 61 - 90 minutes
e. >90 minutes
Marked preference for specific food
colors, shapes, textures, presentation,
or specific arrangement of food on the
plate at ages 3 - 12 years? (please
answer both Frequency and Duration
headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo- 1 year
d. >1 year
e. Uncertain
Insistence on eating with specific uten-
sils/dishes at ages 3 - 12 years? (please
answer both Frequency and Duration
headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo -1 year
d. >1 year
e. Uncertain
Marked aversion/fear of specific food
colors, shapes, textures, presentation,
or specific arrangement of food on the
plate at ages 3 - 12 years? (please
answer both Frequency and Duration
headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo -1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10 - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo -1 year
d. >1 year
e. Uncertain
Fear of ingestion of new foods at ages
3 - 12 years? (please answer both
Frequency and Duration headin g s)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo -1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo -1 year
d. >1 year
e. Uncertain
Ingestion of non-food items, such as
paper, string, dirt, hair, at ages 3 - 12
years? (please answer both Frequency
and Duration headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo – 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Poor social mealtime behaviors (would
not sit with family, temper tantrum
during meal time, throwing food) at
ages 3 - 12 years? (please answer both
Frequency and Duration headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo – 1 year
d. >1 year
e. Uncertain
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V. Badalyan et al. / Open Journal of Pediatrics 1 (2011) 51-63 61
Behavior outbursts during school
lunch, requiring intervention by the
teacher or other school personnel at
ages 3 - 12 years? (please answer both
Frequency and Duration headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo – 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo -1 year
d. >1 year
e. Uncertain
Eating at the same table with other
children who do not have behavioral
problems? (please answer both Fre-
quency and Duration headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo -1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo -1 year
d. >1 year
e. Uncertain
Unusual posturing (neck or trunk turn-
ing/bending/arching) during or after
meals at ages 3 - 12 years? (please
answer both Frequency and Duration
headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo – 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo -1 year
d. >1 year
e. Uncertain
Oral-motor coordination problems (dif-
culty moving solid food inside mouth)
at ages 3 - 12 years? (please answer
both Frequency and Duration head-
ings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
At what age did your child get toilet
training for daytime bowel move-
ments?
___ years not yet toilet trained ___ years not yet toilet trained
Vomiting at ages 3 - 12 years? (please
answer both Frequency and Duration
headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Diarrhea (more than 3 watery bowel
movements per day) at ages 3 - 12
years? (please answer both Frequency
and Duration headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Constipation (more than 3 days be-
tween bowel movements) at ages 3 -
12 years? (please answer both Fre-
quency and Duration headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Soiling in underpants or withholding
stool? (please answer both Frequency
and Duration headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
C
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V. Badalyan et al. / Open Journal of Pediatrics 1 (2011) 51-63
62
Inadequate/under weight or failure to
thrive at ages 3 - 12 years?
a. Yes
b. No
c. Uncertain
a. Yes
b. No
c. Uncertain
Difficulty swallowing solid food at
ages 3 - 12 years? (please answer both
Frequency and Duration headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Reflux / indigestion/ GERD/ esophagi-
tis at ages 3-12 years? (please answer
both Frequency and Duration head-
ings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
If you selected “b”, “c”, or “d” in the
previous question, what tests did your
child have a test to confirm Reflux/
indigestion/ GERD/ esophagitis at the
age of 3 - 12 years? (please check all
that apply)
a. Barium swallow
b. pH probe
c. Endoscopy
d. Biopsy
e. Videofluoroscopy
f. Other ______
g. No tests
h. Not applicabl.
i. Uncertain
a. Barium swallow
b. pH probe
c. Endoscopy
d. Biopsy
e. Videofluoroscopy
f. Other _________
g. No tests
h. Not applicabl.
i. Uncertain
Food allergies at ages 3 - 12 years?
(please check all that appl y)
a. Milk
b. Eggs
c. Citrus
d. Wheat
f. Yeast
g. Corn
h. Other ______
i. No allergies
j. Uncertain
a. Milk
b. Eggs
c. Citrus
d. Wheat
f. Yeast
g. Corn
h. Other ______
i. No allergies
j. Uncertain
Abdominal pain requiring a doctor
visit at ages 3 - 12 years? (please an-
swer both Frequency and Duration
headings)
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Frequency
a. Never
b. Rarely (<10%)
c. Sometimes
(10% - 49%)
d. Often (>50%)
e. Uncertain
Duration
a. Never
b. <6 months
c. 6 mo - 1 year
d. >1 year
e. Uncertain
Celiac disease, proven by blood tests
or by intestinal biopsy at ages 3 - 12
years?
a. Yes
b. No
c. Uncertain
a. Yes
b. No
c. Uncertain
Eosinophilic esophagitis proven by
biopsy at ages 3 - 12 years?
a. Yes
b. No
c. Uncertain
a. Yes
b. No
c. Uncertain
Diseases of small or large intestine at
ages 3 - 12 years?
a. Yes
b. No
c. Uncertain
a. Yes
b. No
c. Uncertain
Medications for gastrointestinal prob-
lems that your child took for at least 1
month at ages 3 - 12 years (check all
that apply)
a. Zantac
b. Pepcid
c. Prevacid
d. Prilosec
e. Flagyl
f. Laxatives (e.g. Miralax, Milk of Magnesia,
etc.)
g. Other _________________________
h. Not applicable
a. Zantac
b. Pepcid
c. Prevacid
d. Prilosec
e. Flagyl
f. Laxatives (e.g. Miralax, Milk of Magnesia,
etc.)
g. Other _________________________
h. Not applicable
Who did your child see for his/her
gastrointestinal problems at ages 3 - 12
years? (check all that apply)
a. Gastroenterologist
b. Dietician
c. Nutritionist
d. Homeopathic practitioner
e. Integrative medicine specialist
f. Herbalist
g. Other (please specify):
______________________
a. Gastroenterologist
b. Dietician
c. Nutritionist
d. homeopathic practitioner
e. integrative medicine specialist
f. herbalist
g. Other (please specify):
_____________________
C
opyright © 2011 SciRes. OJPed
V. Badalyan et al. / Open Journal of Pediatrics 1 (2011) 51-63
Copyright © 2011 SciRes.
63
OJPed
Is your child on Medicaid? yes no yes no
Estimate the total out-of-pocket (medi-
cal, drug, education, P.T., O.T., and
speech therapy) expenditures in the
year 20012 for your ASD child.
a. Less than $1000
b. $1000 - $5000
c. $6000 - $10,000
d. $11,000 - $25,000
e. >$25,000
a. Less than $1000
b. $1000 - $5000
c. $6000 - $10,000
d. $11,000 - $25,000
e. >$25,000
What is your total household income?
a. Less than $25,000
b. $25,000 - $50,000
c. $50,000 - $75,000
d. > $75,000
a. Less than $25,000
b. $25,000 - $50,000
c. $50,000 - $75,000
d. > $75,000
THANK YOU VERY MUCH FOR YOUR TIME AND EFFORT. If you would like to receive a summary of
these survey results, please write in your e-mail address ___________________________________.