J Pediatr Adolesc Gynecol (2010) 23:11e15
Original Study
Gynecologic Issues of Adolescents with Down Syndrome,
Autism, and Cerebral Palsy
Lori M. Burke, MD, Claire Z. Kalpakjian, PhD, MS, Yolanda R. Smith, MD, MS, and Elisabeth
H. Quint, MD
University of Michigan, Departments of Obstetrics and Gynecology and Physical Medicine and Rehabilitation (CK), Ann Arbor,
Michigan, USA
Abstract. Study Objective: The gynecologic issues of ad-
olescents with disabilities are understudied. The purpose of
this study was to identify and compare the presenting com-
plaints, treatments, and follow-up of adolescent girls with
Down syndrome (DS), autism, and cerebral palsy (CP) pre-
senting to a specialized gynecologic clinic for women with
developmental disabilities.
Setting: Outpatient gynecology clinic.
Participants: Forty four adolescents (!21 y); 13 with
DS, 14 with autism, and 17 with CP who presented to the
clinic from 1999 to 2006.
Interventions: None.
Main Outcome Measures: A retrospective review of the
electronic medical records to collect data on age at presen-
tation to clinic, ethnicity, menstrual history, chief com-
plaint, treatment, and follow-up.
Results: Mean age at presentation to clinic was 153.5
years, and age of menarche was 12.52 years; age at men-
arche did not significantly differ between groups. The most
frequent complaints were irregular bleeding (n510) and
mood/behavioral changes (n56). Girls with autism were
significantly (c258.89, P5.012) more likely to present
with behavioral issues than the other 2 groups. Initial man-
agement for the behavior issues in the autism group in-
cluded nonsteroidal anti-inflammatory drugs (NSAID),
oral contraceptives, and education.
Conclusion: The most common gynecologic complaints
of adolescent girls with DS, autism, and CP centered on
menstruation and mood disorders. Patients with autism
were more likely to present with behavioral issues related
to the onset of periods.
Key Words. Developmental disabilities—Adoles
cent—Menarche—Menstruation—Menstrual-related
mood disorders
Address correspondence to: Claire Z. Kalpakjian, PhD, Department
of Physical Medicine and Rehabilitation, 325 E. Eisenhower Blvd,
Ste 300, Ann Arbor, MI 48108-5744.; E-mail: clairez@umich.edu
Ó 2010 North American Society for Pediatric and Adolescent Gynecology
Published by Elsevier Inc.
Introduction
Adolescence can signify a difficult period of transi-
tion, with many emotional and physical changes in
the life of any teenager. For an adolescent with a dis-
ability, this transition can be especially challenging.
The start of menstruation can pose difficulties because
of privacy issues and the need for attendants or family
members in managing personal care.1 Moreover, med-
ication or certain disorders can affect cycling (eg, the
use of anticonvulsants and neuroleptic drugs, or nutri-
tional problems).2 Decision making about treatment
approaches, particularly with respect to reproductive
health, can raise a host of ethical and legal issues with
this population and their families.3
Two previous studies conducted outside the United
States investigated the gynecologic issues of adoles-
cents with disabilities.4,5 Both concluded that bleed-
ing abnormalities were the most prevalent complaint
in this population and that hormone medications were
the most commonly used treatments, similar to the
general adolescent population. Prior work also has
suggested that menarche can occur later in patients
with cerebral palsy (CP; approximately age 14, no
confidence interval [CI] or standard deviation [SD]
given),6 compared to the general population born be-
tween 1980 and 1984 (12.4 years; 95% CI 12.2-
12.6).7
In general, the gynecologic health of women with
disabilities has been largely understudied. There is
some evidence that these women do not receive rou-
tine gynecologic care,8,9 in part because of inaccessi-
ble examination rooms and lack of knowledge among
service providers to meet special needs.10 Although
there has been some research in the United States
on adults with developmental disabilities and their
special gynecologic issues,11 very few have addressed
the specific needs of adolescents with developmental
1083-3188/10/$36.00
doi:10.1016/j.jpag.2009.04.005
12 Burke et al: Adolescents with developmental disabilities
disabilities.2,12 Thus the purpose of this study was to
describe the characteristics and identify the presenting
complaints, treatments, and follow-up, in a specialized
clinic for women with developmental disabilities, of
adolescents with the 3 most common diagnoses in
our adolescent population—Down syndrome (DS),
autism, and cerebral palsy (CP).
Materials and Methods
A retrospective case series was conducted of all ado-
lescent patients seen in a gynecology clinic for repro-
ductive health care for women with developmental
disabilities. The patients were seen at the University
of Michigan Medical Center from 1999 through
2006, after IRB approval was obtained. Initially 87
girls were identified and the 3 most common diagno-
ses—DS, autism, or CP (N544)—were included in
the review. Other inclusion criteria were age #21
years at the time of initial visit and the presence of
the initial visit documentation as part of the electronic
medical record. The following demographic data were
extracted from the record: living situation (ie, home or
institution), caregiver (ie, self, biologic parent, family
member, nonfamily [foster, adoption]), and ethnicity.
The following gynecological data were extracted from
the record: age at menarche, age at presentation to
clinic, chief complaint, menstrual cycle characteris-
tics, sexual activity, and treatment. Bleeding com-
plaints were defined as any physical complaint
specifically occurring during the time of menstruation
(irregular bleeding, pain with menstruation, and hy-
giene). Mood/behavioral complaints were defined as
any change in emotional or behavioral state immedi-
ately preceding (within 2 weeks) or during the time
of menstruation, leading to a disturbance in daily ac-
tivities. The need for follow-up and treatment success
at first follow-up also were extracted. Success of treat-
ment was defined as satisfaction with the treatment as
described by the family and/or the patient, usually
leading to continuation of the treatment. Statistical
analysis included descriptives, 1-way analysis of var-
iance (ANOVA), and chi-square analysis using SPSS,
version 15.0 (released September 2006) (SPSS Inc.,
Chicago, IL).
Results
Study Sample
Table 1 summarizes the gynecological and ethnic
characteristics of the study sample. There were no sig-
nificant differences in age at presentation, age at men-
arche, or menstrual cycle characteristics between girls
with DS, autism, and CP.
Chief Complaints
The most frequent presenting complaints were irregu-
lar bleeding and mood/behavioral changes. Five pa-
tients were seen for annual care and 4 were seen for
for anticipatory menarche, and the remaining 14 pa-
tients had a range of complaints. There were signifi-
cantly more girls with autism who presented with
mood/behavioral problems (n55) compared to girls
in the DS (n51) and CP (n50) groups (c258.87,
P5.012; standardized residual52.2). See Table 2.
Treatment Strategies
Treatment strategies were varied. At the first visit,
most patients (n526) received no immediate treat-
ment, but an approach with documentation of symp-
toms, counseling, and further testing ordered. Three
patients received oral contraceptives and 7 received
non-steroidal anti-inflammatory drugs (NSAIDs) for
pain. There were no significant differences in treat-
ment between groups (c252.72, P5.843).
Initial management for the behavior issues (n55)
in the autism group included 2 girls treated with
NSAIDs to assess for a component of dysmenorrhea;
1 was successful, and 1 was switched to continuous
oral contraceptive pills (OCPs) but continued
NSAIDs. Two were treated with OCPs (1 successful
and 1 partially successful, but successful after switch-
ing to a different formulation), and 1 received educa-
tion and was later started on OCP. The patient with
DS and behavioral problems was treated with
education.
The bleeding and hygiene issues were usually
treated in a sequential pattern. Initially, documenta-
tion of the menses was recommended, using a men-
struation calendar to track when cycles occur, their
duration, and heaviness of flow. If heavy bleeding or
the cycle’s interference with daily activities was the
main concern, then an NSAID and/or OCPs (cyclical
or continuous) were initiated. Our sample size in this
study is too small to compare the success of different
treatments. Intramuscular depot medroxyprogesterone
or progesterone IUD was not used in this study
sample.
Discussion
The most common gynecological complaints for de-
velopmentally delayed adolescents with DS, autism,
and CP were related to menstruation: menorrhagia,
dysmenorrhea, irregular bleeding, and hygiene issues.
This finding is consistent with published studies from
other countries.4,5 We found that girls with autism are
significantly more likely to present with cyclical
mood disturbances. In addition, the age of menarche
for girls with CP showed a trend to a later onset
(but was not statistically significant) when compared
 Burke et al: Adolescents with developmental disabilities 13

Table 1. Study Sample Demographic and Gynecological Characteristics

DS (n 5 13) Autism (n 5 14) CP (n 5 17) Total Group Significance

2
Living situation c 5 2.39, P 5 .302
At home 12 11 16 39
Institution 0 1 0 1
Not mentioned 1 1 1 3
Ethnicity (n) c2 5 1.59, P 5 .810
White 10 11 15 36
African American 1 2 1 4
Unknown/other 2 1 1 4
Age at presentation (mean, SD) 14.92 (3.0) 14.14 (4.4) 15.71 (3.1) 14.98 (3.5) F 5 0.75, P 5 .476
Age at menarche (mean, SD) 11.85 (1.2) 12.00 (1.5) 12.92 (2.8) 12.45 (2.0) F 5 2.66, P 5 .067
Pelvic exam performed? c2 5 1.05, P 5 .591
Yes 4 2 4 10
No 9 12 13 34
Cycle length c2 5 6.09, P 5 .413
Monthly 7 8 7 24
!21 d 0 2 1 3
O35 d 3 0 3 6
Irregular 0 1 0 1
Not reported 1 2 4 7
Abbreviations: CP, cerebral palsy; DS, Down’s syndrome; SD, standard deviation.

to the DS and autism group, which is consistent with
the trend demonstrated in prior work.6 A later onset of
menarche for girls with CP is most likely owing to
central brain causes related to the underlying origin
of the CP. This information may help the practitioner
and the families to manage a later onset of menarche.
Several of the girls in this study presented with the
complaint of anticipatory menses, demonstrating the
need to educate teens and their families. Once breast
development starts, families may indicate trepidation
and concern regarding how this will affect their
daughter’s life, disabilities, activities, and behaviors.
The American College of Obstetricians and Gynecol-
ogists has recently published a committee opinion on
adolescent menstrual cycles as a vital sign, for which
they recommend anticipatory guidance for teens and
parents in pubertal events and the expectation of men-
ses.13 This approach can easily be expanded to in-
clude discussions on hygiene and other issues
pertinent to teens with disabilities and their parents.
Compared to those with DS or CP, adolescents with
autism were significantly more likely to present with
complaints related to mood and behavior abnormali-
ties during and prior to menstruation. Whether this
finding is because of discomfort related to the cycles
leading to behavior changes or is a manifestation of
premenstrual syndrome (PMS) or the more severe
premenstrual dysphoric disorder (PMDD) is unclear.
The occurrence of mood changes in teens with autism
to date has been described only in case reports, espe-
cially pertaining to self-injurious behavior.14 Treat-
ment for this mood issue is often difficult. Three of

Table 2. Chief Complaints (ordered by highest to lowest frequency for total group)

Chief Complaint DS n (%) Autism n (%) CP n (%) Total Group n (%)

Irregular bleeding 3 (23.1) 2 (28.6) 5 (29.4) 10 (22.7)

Mood/behavioral changes 1 (7.7) 5 (35.7) 0 6 (13.6)
Annual visit 2 (15.5) 1 (7.1) 2 (11.8) 5 (11.4)
Pain 1 ( 7.7) 0 4 (23.5) 5 (11.4)
Premenarchal/anticipatory 1 (7.7) 1 (7.1) 2 (11.8) 4 (9.1)
Hygiene 1 (7.7) 0 2 (11.8) 3 (6.8)
Menorrhagia 0 2 (28.6) 0 2 (4.5)
Vaginal discharge 0 1 (7.1) 1 (5.9) 2 (4.5)
Request for sterilization 2 (15.4) 0 0 2 (4.5)
Sexuality 1 (7.7) 0 0 1 (2.3)
Precocious puberty 1 (7.7) 1 (7.1) 0 1 (2.3)
Pelvic mass 0 0 1 (5.9) 1 (2.3)
Genital anatomy 1 (7.7) 0 0 1 (2.3)
Genital stimulation 0 1 (7.1) 0 1 (2.3)
Abbreviations: CP, cerebral palsy; DS, Down’s syndrome.
14 Burke et al: Adolescents with developmental disabilities
5 patients in our study responded to oral contracep-
tives (OCP). Data on the effectiveness of OCPs for
mood disorders is mixed, and symptoms in some indi-
viduals worsen with use of OCPs. Oral contraceptives
appear to improve primarily physical rather than
mood-related symptoms.15 Newer studies suggest that
the use of the progestin drospirenone in an OCP may
be more effective for PMDD, especially if used in
a 24/4 or continuous fashion,16 but it has not been
studied in this population. Although our numbers
are small, initial treatment with OCPs may be used
if elimination of the cycles appears indicated: in other
instances NSAIDs may be a good first line option.
One of our patients reported success of treatment
of behavioral issues with NSAIDs. In an earlier study
on adult women with developmental disabilities and
mood changes, adequate doses of NSAIDs were suc-
cessful as first-line treatment in a majority of cases,
however that study did not focus on adolescents.17
The rationale for treating mood/behavior complaints
with NSAIDs was the assumption that the patient
may be unable to verbalize her physical discomfort
and therefore expresses her discomfort with mood
and behavior changes. Whether these mood changes
in the girls with autism could also be connected to
dysmenorrhea is unclear at this time and warrants fur-
ther study.
No selective serotonin reuptake inhibitors (SSRIs)
were used in our study population. Placebo-controlled
studies of SSRIs in adults have demonstrated effec-
tiveness for severe PMS and PMDD and improvement
in both physical symptoms and mood.18 In the fall of
2004, the FDA issued a public health advisory about
a possible increase in suicidal thinking and behavior
in children and adolescents treated with antidepres-
sants and issued a black box warning. Recent reviews
have questioned the validity of this warning.19 Fluox-
etine is the only SSRI approved for the treatment of
depression in the adolescent population. However,
randomized controlled trials of adolescents with
PMS/PMDD are lacking. There is 1 case series de-
scribing 3 teenagers with PMDD who were success-
fully treated with fluoxetine after failing other
treatment modalities.20 Another case report described
2 teenagers with the onset of menstrually related, self-
injurious behavior at age 12; 1 responded to treatment
with paroxetine.14
No patients were treated with hormone injections
in our study. The concerns regarding bone density
and weight gain associated with the use of depot me-
droxyprogesterone have the potential to limit long-
term use in teens and is therefore usually not first-line
treatment.21 Some of the girls with disabilities are al-
ready at risk for low bone density owing to inactivity
or wheelchair use. In addition, the weight gain associ-
ated with the intramuscular injection may have
significant implications for those teens who need as-
sistance with their daily needs or transfers.
This study is limited primarily by the relatively
small number of teens seen in our clinic for women
with disabilities, and the even smaller number of teens
with these 3 diagnoses, the retrospective nature of the
study, and the limited and incomplete follow up.
However, few clinics exist solely to address the needs
of this population, and our study provides important
information regarding an underserved group of teens,
including a comparison between diagnostic groups.
Overall, the gynecological issues for teens with
disabilities center on menstruation and mood disor-
ders. Cyclical behavior issues appear to be a pro-
nounced problem for girls with autism. Early
education of parents and patients with autism is criti-
cal in helping to mitigate potential problems after
menarche, and research is needed to identify risk fac-
tors, underlying causes, and treatment for pubertal be-
havior disturbances in this population. These
preliminary findings are particularly important given
the rise autism spectrum disorders incidence in the
U.S.,22 although there is debate over the cause of such
trends,23 and the increased need for specialized care
for children with development disabilities who also
have behavioral disorders.24 The complex needs of
adolescents with disabilities and particularly those
with behavioral issues calls for a multidisciplinary ap-
proach to gynecological care to maximize the health
and well being of these girls and their caregivers.
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