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Published in final edited form as: Am J Obstet Gynecol. 2024 Jan 12;230(5):546.e1–546.e14. doi: 10.1016/j.ajog.2024.01.005

Reproductive Health Care in Adolescents with Autism and Other Developmental Disabilities

Jennifer L AMES a, Meredith C ANDERSON a, Emily CRONBACH b, Catherine LEE a, Morénike GIWA ONAIWU c,d,e, Amy M VALLERIE f, Lisa A CROEN a
PMCID: PMC11070300  NIHMSID: NIHMS1968783  PMID: 38218512

Abstract

Background:

Adults with developmental disabilities often have less access to reproductive health services than adults without these disabilities. However, little is known about how adolescents with developmental disabilities, including autism, access reproductive health care.

Objective:

We aimed to characterize the utilization of reproductive health care services among autistic adolescents and adolescents with other developmental disabilities in comparison with typically developing adolescents.

Study Design:

We conducted a cohort study of a sample of adolescents who were continuously enrolled members of Kaiser Permanente Northern California, an integrated healthcare system, from ages 14 to 18. The final analytic sample included 700 autistic adolescents, 836 adolescents with other developmental disabilities, and 2187 typically developing adolescents who sought care between 2000 and 2017. Using electronic health records, we obtained information on menstrual conditions, use of obstetric/gynecological care, and prescriptions of hormonal contraception. We compared utilization between groups using chi-squared tests and covariate-adjusted risk ratios estimated with modified Poisson regression.

Results:

Autistic adolescents and adolescents with other developmental disabilities were significantly more likely to have diagnoses of menstrual disorders, polycystic ovary syndrome, and premenstrual syndrome than typically developing adolescents. These two groups also were less likely than typically developing peers to visit the OB/GYN or to use any form of hormonal contraception, including oral contraception, hormonal implants, and intrauterine devices. Adolescents in all three groups accessed hormonal contraception most frequently through their primary care provider, followed by an OB/GYN provider.

Conclusions:

Autistic adolescents and adolescents with other developmental disabilities are less likely than their typically developing peers to visit the OB/GYN and use hormonal contraception, suggesting possible care disparities that may persist into adulthood. Efforts to improve access to reproductive healthcare in these populations should target care delivered in both pediatric and OB/GYN settings.

Keywords: adolescence, adolescent reproductive health, autism, developmental disabilities, hormonal contraception, menstrual conditions, PCOS, sexual health

INTRODUCTION

Adults with developmental disabilities (DD), including autism, often have less access to reproductive and sexual health resources, including contraceptive counseling and cervical cancer screenings, than peers without DD.1–5 However, little is known about how this population accesses contraception and OB/GYN care during adolescence. Previous studies suggest that reproductive health topics are routinely neglected when youth with DD are transitioning to adulthood.6–10 Suboptimal sexual and reproductive health care may place youth with autism and other DD at higher risk of reproductive health problems.11,12 For example, youth with DD are more likely than youth without DD to experience menstrual irregularities13,14, pain and distress cycling with menstruation15–17, and sexual victimization and abuse18–20.

While the American College of Obstetricians and Gynecologists (ACOG) has clinical guidelines for menstrual care of adolescent patients with DD21, numerous factors, including inadequate provider knowledge about DD and limited research on hormonal contraception in this population,14,22,23 may hinder clinicians from meeting this group’s reproductive health needs.24–26

To-date, studies in adolescents have either been small or focused on broad groupings of DD, which limits our understanding of how reproductive health needs may vary across different developmental disabilities. To evaluate the gaps in reproductive healthcare in this population, we examined reproductive health status and healthcare use across three groups – autistic adolescents, adolescents with other DD, and typically developing adolescents – using data from a large integrated healthcare system in California. We additionally examined whether youth are accessing contraception in primary care or in OB/GYN settings, where providers may be less familiar with this patient population, to inform future improvements to care.

MATERIALS AND METHODS

Setting

We conducted a cohort study in the member population of Kaiser Permanente Northern California (KPNC), a large, integrated health care delivery system. While members live in both rural and urban areas, most of KPNC’s 4.4 million members are concentrated in the San Francisco/Bay Area, Sacramento metropolitan area, and nearby counties. The KPNC membership is broadly representative of the statewide population, excluding the tails of the income distribution.27 KPNC maintains a comprehensive electronic health record (EHR) of all patient clinical encounters with the healthcare system, including inpatient and outpatient visits, procedures for medical and mental health care, medical diagnoses, laboratory tests, and prescribed medications.

Study population

The participants in the present study were subsampled from a parent cohort study that was originally focused on reproductive health in adults with autism, other developmental disabilities, and typical development. To be eligible for the parent study, participants had to be assigned female at birth, aged 18+ in 2017, and enrolled in the KPNC health plan between 2017 and 2019. Among this population, we identified three groups: autistic individuals, individuals with other DD, and typically developing individuals. Autistic individuals had diagnoses of autism spectrum disorder (ASD) [Autism: International Classification of Diseases-9-Clinical Modification (ICD-9-CM) 299.0; Asperger’s Disorder (ICD-9-CM 299.8); Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) (ICD-9-CM 299.9)]) recorded in the KPNC EHR on at least two separate occasions any time before the end of 2019.28 Individuals with other DD did not have a diagnosis of ASD, but had diagnoses of cerebral palsy, intellectual disability, and/or genetic conditions associated with developmental disabilities (e.g., Down syndrome; diagnoses listed in Supplemental Table 1) recorded in KPNC EHR on at least two separate occasions any time before the end of 2019. Those in the typically developing group did not meet criteria for the autistic or DD groups and were matched 4:1 on age and KPNC membership length to counterparts in the autistic group.

Among this original sample (n=10,541), we identified all participants who were continuously enrolled in the KPNC health plan during their adolescent years (ages 14–18). We defined continuous enrollment as KPNC membership for at least 6 months in each age between 14 to 18. The final analytic sample included 700 autistic adolescents, 836 DD adolescents, and 2187 typically developing adolescents, who accessed care during 2000–2017.

Reproductive health diagnoses and healthcare utilization

Using algorithms based on ICD-9 and ICD-10 diagnostic codes in the EHR (Supplemental Table 2), we ascertained diagnoses of menstrual disorders (e.g., dysmenorrhea, amenorrhea), polycystic ovary syndrome (PCOS), premenstrual syndrome, and urinary tract infections (UTIs), and lab results for sexually transmitted infection (STI) tests that were recorded when the patients were aged 14–18. Utilization variables included outpatient visits to OB/GYN and primary care (as pediatricians commonly diagnose menstrual-related conditions and prescribe hormonal contraception), use of hormonal contraception, provider specialty prescribing the hormonal contraception, and STI screening. We examined utilization of short-acting reversible forms of hormonal contraception including oral contraceptive pills (OCs), injectables (i.e., depomedroxyprogesterone acetate [“Depo Provera”]), transdermal contraceptive patches, and vaginal rings. We additionally extracted utilization of long-acting reversible contraception (LARC), including insertion of levonorgestrel-releasing and the copper intrauterine contraceptive device (IUD) and subdermal implants. Among those using OCs, we also examined accompanying diagnostic codes indicating whether the prescription was primarily for therapeutic use (i.e., prescribed for reasons other than birth control). Using dates of service utilization, we calculated the patient’s age at first OB/GYN visit and hormonal contraception use.

Covariates

We identified potential confounders using a directed acyclic graph (Supplemental Figure 1). From KPNC’s administrative and health databases, we extracted information on confounders including each patient’s insurance payer at age 14 (private, government); race/ethnicity (Asian, Black, Hispanic/Latino, White, Other); and, during ages 14–18, cumulative months of KP membership, and frequency of visits to primary care and OB/GYN.

Statistical analysis

We first compared the crude prevalence of each specific reproductive health diagnosis and type of healthcare utilization between groups using chi-square and t-tests. We then used modified Poisson regression to estimate crude and adjusted relative risks (RR) of clinical and utilization outcomes.29 RRs are more easily interpretable in cohort studies than odds ratios and are not subject to inflation with common outcomes.30 Adjusted models included birth year, race/ethnicity, insurance type, and frequency of primary care utilization during ages 14–18. Models for menstrual-related conditions were additionally adjusted for patient visits to the OB/GYN. In addition, we examined the use of hormonal contraception among the subset of adolescents with a diagnosis of a menstrual disorder.

Human and nonhuman experimentation

The KPNC IRB approved all study procedures and waived the requirement to obtain informed consent from individual participants included in the study since this was a data only study.

RESULTS

Adolescents in the sample were born between 1985 and 1999 (Table 1). Most of the individuals in the autistic (48.4%) and typically developing (55.1%) groups were born between 1995–1999 while most in the DD group (40.3%) were born between 1990–1994. Autistic adolescents were more likely to be White, non-Hispanic than the other groups. The autistic and DD groups were more likely than the typically developing group to have health insurance paid by Medicaid. Approximately 97% of individuals in each study group had at least one pediatric primary care visit during ages 14–18, with approximately 75% visiting either pediatric or adult primary care at least 5 times during this period.

Table 1:

Characteristics of autistic adolescents, adolescents with other developmental disabilities, and typically developing adolescents Kaiser Permanente Northern California

ASD
n=700		 DD
n=836		 TD
n=2187		 ASD vs. DD chi-sq
p-val		 ASD vs. TD chi-sq
p-val		 DD vs. TD chi-sq
p-val
Race/ethnicity <0.0001 <0.0001 0.0004
 White, non-Hispanic 382 (54.6) 354 (42.3) 857 (39.2)
 Hispanic 130 (18.6) 226 (27.0) 511 (23.4)
 Black 59 (8.4) 107 (12.8) 263 (12.0)
 Asian 108 (15.4) 117 (14.0) 452 (20.7)
 Pacific/American Indian/Missing 21 (3.0) 32 (3.8) 104 (4.8)
Total KP membership ages 14–18 months, mean (SD) 59.7 (1.1) 59.6 (1.2) 59.6 (1.4) 0.95 a 0.11 a 0.11 a
Type of Insurance (age 14) 0.01 0.04 <0.0001
 KP 613 (87.6) 694 (83.0) 1980 (90.5)
 Medicaid/Government 85 (12.1) 141 (16.9) 206 (9.4)
 Unknown 2 (0.3) 1 (0.1) 1 (0.1)
Birth year <0.0001 0.0003 <0.0001
1985–1989 116 (16.6) 204 (24.4) 248 (11.3)
1990–1994 245 (35.0) 337 (40.3) 734 (33.6)
1995–1999 339 (48.4) 295 (35.3) 1205 (55.1)
General outpatient utilization
Primary Care (Peds) 682 (97.4) 816 (97.6) 2122 (97.0) 0.82 0.58 0.39
Primary care (Adult) 435 (62.1) 550 (65.8) 1383 (63.2) 0.14 0.6 0.19
Frequency of primary care (Peds or Adult) visits
 < 5 visits 174 (24.9) 157 (18.8) 569 (26.0) <0.001 0.13 <0.001
 5–10 visits 307 (43.9) 322 (38.5) 1020 (46.6)
 >10 visits 219 (31.3) 357 (42.7) 598 (27.3)
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ASD: Autism Spectrum Disability; DD: Developmental Disabilities; TD: Typical Development;

a

P-value from Wilcoxon ranked sum test to account for non-normal distribution of membership months

Prevalence of menstruation-related conditions

Compared with the typically developing group, the autistic and DD groups were significantly more likely to have diagnoses of menstrual disorders (38.1% and 39.7% vs. 32.2%), PCOS (17.0% and 15.8% vs. 10.6%), and premenstrual syndrome (5.4% and 2.8% vs. 1.6%) (Table 2). In contrast, the autistic and DD groups were less likely to have UTIs (6.7% and 10.5% vs. 15.0%) and STIs (both<1% vs. 3.1%) compared with the typically developing group. These differences persisted after adjustment for covariates in regression models (Table 2). Compared with the DD group, autistic individuals were more likely to be diagnosed with PCOS (aRR=1.28; 95%CI 1.01, 1.61) and premenstrual syndrome (aRR=2.11; 95%CI 1.26, 3.54) and less likely to have a UTI (aRR=0.61; 95%CI 0.44–0.87).

Table 2:

Menstrual-related health conditions among autistic adolescents, adolescents with other developmental disabilities, and typically developing adolescents, Kaiser Permanente Northern California

ASD DD TD ASD vs. DD ASD vs. TD DD vs. TD
Health Conditions b n(%) n(%) n(%) Crude RR (95%CI) Adj1-RR (95%CI)a Crude RR (95%CI) Adj1-RR (95%CI)a Crude RR (95%CI) Adj1-RR (95%CI)a
Menstrual Disorders 267 (38.1) 332 (39.7) 705 (32.2) 0.96 (0.84, 1.09) 1.04 (0.92, 1.18) 1.18 (1.06, 1.32) 1.20 (1.08, 1.34) 1.23 (1.11, 1.37) 1.16 (1.04, 1.28)
Polycystic Ovarian Syndrome (PCOS) 119 (17.0) 132 (15.8) 231 (10.6) 1.08 (0.86, 1.35) 1.28 (1.01, 1.61) 1.61 (1.32, 1.98) 1.75 (1.42, 2.15) 1.50 (1.23, 1.82) 1.23 (1.00, 1.52)
Premenstrual syndrome (PMS) 38 (5.4) 23 (2.8) 34 (1.6) 1.98 (1.19, 3.28) 2.11 (1.26, 3.54) 3.50 (2.22, 5.52) 3.18 (1.97, 5.14) 1.77 (1.05, 2.99) 1.72 (0.99, 2.97)
Urinary Tract Infection (UTI)c 47 (6.7) 88 (10.5) 329 (15.0) 0.64 (0.46, 0.90) 0.61 (0.44, 0.87) 0.45 (0.33, 0.60) 0.43 (0.32, 0.58)
0.70 (0.56, 0.87) 0.70 (0.56, 0.88)
Sexually transmitted infections <5 5 (0.6) 67 (3.1) -- d -- d --d
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ASD: Autism Spectrum Disability; DD: Developmental Disabilities; TD: Typical Development; RR: Relative Risk;

a

Adjusted model 1 includes race/ethnicity, birth year, insurance payer, months KP membership, visit to the OB/GYN during the ages of 14–18, and frequency of primary care use during the ages of 14–18.

b

Diagnostic codes listed in Supplemental Table 2.

c

Adjusted model 1 without adjustment for OB/GYN use.

d

Model did not converge. Outcome counts too small for regression analyses.

Reproductive healthcare utilization

Compared with the typically developing group, the autistic and DD groups were significantly less likely to visit the OB/GYN during their adolescent years (28.4% and 27.9% vs. 39.1%) (Table 3). However, among those who did visit the OB/GYN, autistic and DD adolescents were more likely than typically developing adolescents to use OB/GYN care by age 14.

Table 3:

Reproductive health care utilization among autistic adolescents, adolescents with other developmental disabilities, and typically developing adolescents, Kaiser Permanente Northern California

GYN Utilization ASD (n=700)
n(%)		 DD (n=836)
n(%)		 TD (n=2187)
n(%)		 ASD vs. DD χ2
p-val		 ASD vs. TD χ2
p-val		 DD vs. TD χ2
p-val
Visit to OB/GYN provider (any reason), ages 14–18 199 (28.4) 233 (27.9) 854 (39.1) 0.81 <0.0001 <0.001
Age at first OB/GYN visit (Mean [SD]) 16.4 (2.1) 16.4 (1.9) 16.8 (1.5) 0.96 0.001 0.002
 Initiated <=age 14 38 (19.1) 32 (13.7) 71 (8.3) 0.23 0.0003 0.002
 Initiated age 15/16 40 (20.1) 66 (28.3) 205 (24.0)
 Initiated age 17/18 121 (60.8) 135 (57.9) 578 (67.7)
Hormonal contraception
 Any hormonal contraception, ages 14–18 240 (34.3) 269 (32.2) 958 (43.8) 0.38 <0.0001 <0.0001
 1 method of hormonal contraception 173 (72.1) 209 (77.7) 709 (74.0) 0.14 0.55 0.22
 More than 1 method of hormonal contraception 67 (27.9) 60 (22.3) 249 (26.0)
OC Pill (Any) 198 (28.3) 216 (25.8) 832 (38.0) 0.28 <0.0001 <0.0001
Age at first OC pill (Mean[SD]) 15.3 (2.0) 15.4 (1.9) 16.3 (1.5) 0.53 <0.0001 <0.0001
 Initiated <=age 14 65 (32.8) 63 (29.2) 103 (12.4) 0.36 <0.0001 <0.0001
 Initiated age 15/16 77 (38.9) 87 (40.3) 291 (35.0)
 Initiated age 17/18 56 (28.3) 66 (30.5) 438 (52.6)
 OC for therapeutic reasons 44 (22.2) 26 (12.0) 106 (12.7) 0.006 0.0007 0.78
 Age at first OC pill for therapeutic reasons (Mean[SD]) 16.2 (1.1) 16.1 (1.3) 16.3 (1.2) 0.96 0.60 0.62
Prescribing provider for OC
 Primary Care 135 (68.2) 143 (66.2) 596 (71.6) 0.03 0.22 <0.001
 OB/GYN 45 (22.7) 36 (16.7) 188 (22.6)
 Other Specialist 18 (9.1) 37 (17.1) 48 (5.8)
Depo Provera 40 (5.7) 52 (6.2) 97 (4.4) 0.68 0.17 0.04
 Age at first Depo Provera (Mean[SD]) 15.9 (2.0) 16.3 (1.9) 17.1 (1.2) 0.43 0.002 0.009
 Initiated <=age 14 12 (30.0) 6 (11.5) 5 (5.2) 0.11 0.0002 0.004
 Initiated age 15/16 10 (25.0) 16 (30.8) 22 (22.7)
 Initiated age 17/18 18 (45.0) 20 (57.7) 70 (72.2)
Insertion of Intrauterine Devices (IUD) 10 (1.4) 8 (1.0) 75 (3.4) 0.39 0.006 0.0002
Hormonal implant 6 (0.9) 12 (1.4) 63 (2.9) 0.29 0.002 0.02
Hormonal ring 9 (1.3) 3 (0.4) 42 (1.9) 0.04 0.27 0.002
Hormonal patch 5 (0.7) 12 (1.4) 21 (1.0) 0.18 0.55 0.26
Screening for STI 128 (18.3) 156 (18.7) 974 (44.5) 0.85 <0.0001 <0.0001
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ASD: Autism Spectrum Disability; DD: Developmental Disabilities; TD: Typical Development; OC: oral contraceptive; STI: Sexually-transmitted infection

Compared with the typically developing group, the autistic and DD groups were significantly less likely to use hormonal contraception during their adolescent years (34.3% and 32.2% vs. 43.8%) (Table 3). Among those who used hormonal contraception, similar proportions in each group used more than one method of hormonal contraception (~25%). OCs were the most common method of hormonal contraception, accounting for 80–87% of the total hormonal contraception use within each group. There was no significant difference between autistic and typically developing adolescents with regards to type of providers prescribing OCs; for all three groups, primary care providers were the most common prescribing providers, followed by OB/GYNs (Table 3). Specialty providers (e.g., endocrinologists, dermatologists) also commonly provided OCs to the DD group. Adolescents in the autistic and DD groups were on average 1 year younger than peers in the typically developing group when they started OCs (15 vs 16 years old). The autistic group was also the most likely to be dispensed OCs for therapeutic reasons.

Depo Provera contraception was slightly more common among the autistic (5.7%) and DD (6.2%) groups than among the typically developing group (4.4%) (Table 3). Other types of contraception such as hormonal implants, rings, and patches were each used by <3% in each group. Adolescents in the autistic and DD groups were less likely than typically developing peers to use IUDs (1.4% and 1.0% vs. 3.4%). However, the contraceptive mix varied by birth cohort, with individuals born after 1990 less likely to use OCs and more likely to use IUDs, Depo, rings, and patches than their counterparts born 1985–1989 (Supplemental Figure 2). These differences in reproductive healthcare utilization across diagnostic groups persisted after adjusting for covariates (Table 4).

Table 4:

Reproductive care utilization among autistic adolescents, adolescents with other developmental disabilities, and typically developing adolescents, Kaiser Permanente Northern California

ASD vs. DD ASD vs. TD DD vs. TD
GYN Utilization Crude RR
(95%CI)		 Adj1a-RR
(95%CI)		 Crude RR
(95%CI)		 Adj1a-RR
(95%CI)		 Crude RR
(95%CI)		 Adj1a-RR
(95%CI)
Visit to OB/GYN provider (any reason), ages 14–18 1.02 (0.87, 1.20) 1.02 (0.87, 1.20) 0.73 (0.64, 0.83) 0.69 (0.61, 0.78) 0.71 (0.63, 0.81) 0.66 (0.58, 0.75)
Hormonal contraception
Any hormonal contraception, ages 14–18 1.07 (0.93, 1.23) 1.08 (0.94, 1.25) 0.78 (0.70, 0.88) 0.73 (0.65, 0.81) 0.74 (0.66, 0.82) 0.67 (0.61, 0.75)
Use of OC Pill (Any) 1.10 (0.93, 1.29) 1.12 (0.95, 1.32) 0.75 (0.65, 0.85) 0.68 (0.60, 0.77) 0.68 (0.60, 0.77) 0.62 (0.54, 0.70)
Rx for OC for therapeutic reasons 1.76 (1.15, 2.69) 1.56 (1.01, 2.38) 1.40 (1.01, 1.93) 1.42 (1.03, 1.96) 0.79 (0.55, 1.16) 0.91 (0.62, 1.33)
Depo Provera 0.92 (0.62, 1.37) 0.96 (0.64, 1.45) 1.29 (0.90, 1.85) 1.25 (0.87, 1.79) 1.40 (1.01, 1.95) 1.21 (0.85, 1.72)
Insertion of Intrauterine Devices (IUD) 1.50 (0.59, 3.77) -- b 0.42 (0.22, 0.80) 0.40 (0.21, 0.78) 0.28 (0.14, 0.58) 0.26 (0.13, 0.55)
Hormonal implant 0.60 (0.23, 1.59) -- b 0.30 (0.13, 0.69) 0.30 (0.13, 0.69) 0.50 (0.27, 0.92) 0.64 (0.34, 1.20)
Hormonal ring 3.59 (0.98, 13.2) -- b 0.67 (0.33, 1.37) 0.60 (0.29, 1.24) 0.19 (0.06, 0.60) 0.16 (0.05, 0.52)
Hormonal patch 0.50 (0.18, 1.41) 0.65 (0.22, 1.97) 0.75 (0.28, 1.97) 0.66 (0.25, 1.71) 1.50 (0.74, 3.03) -- b
Screening for STI 0.98 (0.79, 1.21) 1.01 (0.82, 1.24) 0.41 (0.35, 0.48) 0.41 (0.35, 0.48) 0.42 (0.36, 0.49) 0.41 (0.35, 0.47)
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ASD: Autism Spectrum Disability; DD: Developmental Disabilities; TD: Typical Development; OC: oral contraceptive; RR: Relative risk; STI: Sexually-transmitted infection

a

Adjusted model includes birth year, race/ethnicity, length of KP membership, insurance type, and frequency of primary care use during ages 14–18.

b

Model did not converge. Outcome counts too small for regression analyses

Among adolescents with PCOS, there was no difference in use of hormonal contraception across the three groups (Supplemental Table 3). However, among adolescents with menstrual disorders or premenstrual syndrome, those in the autistic and DD groups were less likely than typically developing peers to use hormonal contraception.

The autistic and DD groups were 60% less likely than the typically developing group to be screened for STIs (Table 4).

COMMENT

Principal findings:

In this large study of reproductive healthcare in individuals assigned female at birth enrolled in the same integrated healthcare system, we found that autistic and DD adolescents were significantly more likely to have diagnoses of menstrual disorders, PCOS, and premenstrual syndrome than typically developing peers. Despite this higher prevalence of these conditions, autistic and DD adolescents were less likely to visit the OB/GYN or to use any form of hormonal contraception, including OCs, hormonal implants, and IUDs. However, autistic and DD adolescents who did go to the OB/GYN or use hormonal contraception during the ages of 14–18 tended to first utilize these services at a younger age than their typically developing counterparts. Most adolescents in the sample accessed hormonal contraception through their primary care provider.

Results in the context of what is known:

Several smaller studies have also observed a high prevalence of irregular bleeding, premenstrual syndrome, and PCOS among adolescents and adults with autism or other DD.11,15–17,31 At a gynecologic clinic in Canada, menstrual conditions affected 28–45% of youth with DD,22 similar to the prevalence observed in the present study. This co-occurrence between autism/DD and menstrual conditions is poorly understood but may relate to overlapping physiology, other co-occurring conditions, or medications. For example, altered serotonergic functioning, a factor in both autism/DD32 and PMS, may lead to increased sensitivity to hormonal changes during menstrual cycles.33,34 Additionally, seizure disorders, which frequently co-occur with autism and DD,35,36 are associated with PCOS, suggesting that antiepileptic medications or disruption of the hypothalamic–pituitary axis (HPA) during neurodevelopment may play a role.37 Many adolescents in these groups also use mood-stabilizing and antipsychotic medications38 which can cause high prolactin levels and weight gain, contributing to menstrual irregularities.39,40

From 2000 to 2017, the period when this sample accessed contraception, there was significant expansion of the availability, clinical training, and insurance coverage for contraceptive methods by KPNC and Medicaid.41,42 This likely explains the observed shift from OCs towards IUDs and other methods among individuals with later birth years in our study. Nevertheless, the contraception use in the autism and DD groups generally align with clinical recommendations for adolescents with developmental disabilities to prioritize OCs, Depo Provera, and IUDs as first-line hormonal methods.21 Considerations such as contraindications with seizure medicine, needle anxiety, and side effects like mood changes and weight gain often factor in to choosing contraception for this population.14,23 IUDs, though highly effective, were used less frequently by autistic and DD adolescents, perhaps because insertion requires a pelvic exam, which can be uncomfortable for sensory and/or other reasons, and sometimes sedation, which requires additional time and resources. However, reassuring evidence from a recent study showing high IUD continuation and amenorrhea rates among adolescents with physical and developmental disabilities may further promote the accessibility of this method.43 Furthermore, as clinician comfort with inserting IUDs and implants has increased, so have their prescribing behaviors.41

The infrequent use of hormonal patches in our study, even among those who turned 14 after the patch became available in 2003, differs from a Canadian study in which patches were the second most common form of hormonal contraception among youth with DD.22 Though OCs and hormonal patches show comparable efficacy, adolescents using the patch are more likely than peers using OCs to discontinue use and experience an unintended pregnancy44–46, a finding which may be influencing contraceptive counseling. Providers may also worry about the patch’s efficacy in patients with high BMIs,47 which disproportionately affects autistic and DD patients, as well as the risk of deep vein thrombosis in patients with low mobility.21

We found that autistic adolescents were more likely than DD and typically developing peers to be prescribed OCs for therapeutic reasons, presumably to treat menstrual-related symptoms or for menstrual management, rather than for birth control. However, we also found that hormonal contraception use among adolescents with menstrual conditions was lower in the autistic and DD groups. Considering that providers might not always document OC’s therapeutic use, this latter finding could indicate a tendency among caregivers of adolescents with autism and DD to favor an expectant management approach (i.e., “wait and see”) before using OCs, if menstrual symptoms seem manageable.22,48 While not investigated here, future studies should examine this population’s uptake of non-hormonal interventions for menstrual symptom management, including use of tranexamic acid for heavy bleeding and NSAIDs.

Lower use of reproductive healthcare has also been observed among adults with intellectual and developmental disabilities compared with typically developing peers.1,5,49–51 Thus, adolescence may be a key period to address and ameliorate the underlying causes of these reproductive healthcare disparities in these populations. However, most individuals in the present study did not utilize any OB/GYN care during adolescence. There is no consensus about when young people should begin discussing reproductive health with their providers and having routine visits with the OB/GYN.52 Clinical guidelines at KPNC recommend that patients ages 18 years old and above have an OB/GYN provider. However, many people only seek OB/GYN care for their first recommended cervical cancer screening at age 21 or older, although it is not uncommon for youth to visit an OB/GYN shortly after menarche or when they become sexually active, regardless of age. Although the underlying reasons for OB/GYN visits in our sample are unknown, the earlier age of OB/GYN care and OC use among autistic and DD adolescents compared with their typically developing peers suggests a possible interest in earlier menstrual suppression approaches by these adolescents and/or their caregivers, likely coinciding with the onset of menarche. Menstrual suppression was also the most common reason youth with DD visited OB/GYN clinics in Canada.22,53

Clinical implications:

Most adolescents primarily accessed hormonal contraception through their primary care provider, which is consistent with findings in the general adolescent population.54 However, reproductive and sexual health topics often go undiscussed during pediatric visits with autistic and other DD youth, indicating that patients and their caregivers may struggle to raise these issues without support or within the limited window of the appointment.55,56 This is further compounded by substantial evidence of deficiencies in sexual health education received by this population through their schools, parents, and peers.6–10 Thus, pediatricians, in addition to OB/GYNs, should be included as key partners in efforts to enhance sexual and reproductive care for autistic and other DD adolescents. Pediatricians also typically have stronger rapport with adolescent patients and serve as the medical home for autistic youth, making this setting potentially more comfortable and individualized for sexual health discussions.57 OB/GYNs, who are often less familiar with autism than pediatricians, can likely benefit from specialized training and resources to provide better care to the growing number of adolescent and adult patients with autism and DD.58

Research Implications:

There are several study limitations that warrant investigation in future quantitative and qualitative studies. First, our findings are limited by a lack of information on age at menarche and sexual activity, important determinants of when a person may wish to initiate contraception. Moreover, sexual activity data would have allowed us to gain a better understanding of the lower prevalence of STIs and UTIs observed in the autism and DD groups. Previous studies have reported conflicting results with respect to STI risk in these populations59,60 indicating the need for ongoing research on this topic. Second, we did not include reproductive health services that adolescents may have sought in other settings, such as Planned Parenthood, which are typically free or low cost and may offer more discreet or comfortable paths to contraception without involving a caregiver (We expect, however, that such outside services would have been most easily accessed by typically developing youth.).

Strengths and Limitations:

Another limitation is we ascertained menstrual-related conditions based on diagnostic codes recorded by clinicians in the EHR and did not validate them by chart review. We also expect that patient challenges with interoception and pain communication61 and limited access to reproductive health knowledge could lead to lower reporting and detection of menstrual conditions among autistic and DD youth. Further, given that ASD is typically under-diagnosed in girls,62 there may be some misclassified individuals in the typically developing group. However, due to the low prevalence of ASD, we expect this misclassification to be minimal and unlikely to introduce significant bias. These limitations imply that the differences observed in our study are under-estimates of the true differences among these groups. Additionally, future studies should investigate the influence of greater gender diversity among autistic youth63 on their access to and use of reproductive health services.

Our study also has several strengths including its large and racially/ethnically diverse sample of autistic adolescents, generally representative of the insured population of Northern California.27 Using comprehensive data recorded in EHR, we were able to ascertain the types, timing, and prescriber of a variety of hormonal contraception methods across a five-year observation window.

Conclusions:

Adolescents with autism or other DD have higher rates of menstruation-related conditions and are less likely to visit the OB/GYN and use hormonal contraception than typically developing peers. Given that these care disparities are known to persist into adulthood, future work should aim to understand and overcome these barriers to access in adolescence. More nuanced exploration of differences in care by types of disability, including co-occurring intellectual disability, support needs, and communication preferences, is also needed. Our study suggests that efforts to improve reproductive healthcare during the transition to adulthood will benefit from examining reproductive health services delivered in both pediatric and OB/GYN settings.

Supplementary Material

1

Tweetable statement:

Autistic adolescents are more likely to have menstrual-related health problems than their non-autistic peers but often have lower utilization of reproductive healthcare, including hormonal contraception.

AJOG at a Glance.

A. Why was this study conducted?

Adults with disabilities often have less access to reproductive health resources. However, little is known about how adolescents with developmental disabilities, including those with autism, access reproductive health care services. This cohort study compared reproductive healthcare utilization patterns across autistic adolescents, adolescents with other developmental disabilities, and adolescents with typical development who were all receiving care in the same integrated healthcare system.

B. What are the key findings?

Adolescents with autism and other developmental disabilities had higher rates of menstruation-related conditions and were less likely to visit the OB/GYN and use hormonal contraception than typically developing peers.

C. What does this study add to what is already known?

This study highlights the transition to adulthood as a critical period to promote reproductive health and reproductive healthcare utilization for both autistic adolescents and adolescents with other developmental disabilities.

Acknowledgments:

We would also like to recognize the contributions of Yinge Qian (KPNC) for consulting on data extraction from electronic health records. We would also like to recognize the feedback and insights on this work contributed by our community partners on the Autism and Reproductive Health Advisory Committee (funded by of the US Department of Health and Human Services under the Autism Intervention Research Network on Physical Health, grant UT2MC39440): Lindsey Nebeker, Kayla Rodriguez, Chloe Rothschild, and Inge Sorenson.

Funding:

This project is supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (R03HD105164), Kaiser Permanente Community Health, and the Health Resources and Services Administration of the US Department of Health and Human Services under the Autism Intervention Research Network on Physical Health, grant UT2MC39440. The information, content, and/or conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by Health Resources and Services Administration, US Department of Health and Human Services, or the US Government. The funders/sponsors did not participate in the work.

Abbreviations

DD

developmental disabilities

ASD

autism spectrum disorder

OB/GYN

obstetric/gynecological

ACOG

American College of Obstetricians and Gynecologists

PCOS

polycystic ovarian syndrome

UTI

urinary tract infection

STI

sexually transmitted infection

OC

oral contraception pill

KPNC

Kaiser Permanente Northern California

EHR

electronic health record

HPA

hypothalamic–pituitary axis

LARC

long-acting reversible contraception

IUD

intrauterine contraceptive device

KPHC

Kaiser Permanente Health Care

Footnotes

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Conflict of Interest Disclosures: The authors have indicated they have no potential conflicts of interest relevant to this article to disclose.

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NIHMS1968783-supplement-1.pdf (562KB, pdf)

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