By Nadia King and Maria I. Rodriguez, MD, MPH
Nadia King is a student, School of Medicine, Oregon Health & Science University, Portland. Dr. Rodriguez is Professor, Obstetrics & Gynecology, Division of Complex Family Planning, Department of Obstetrics & Gynecology, Oregon Health & Science University, Portland.
This cohort study of 3,723 female adolescents from the Kaiser Permanente healthcare system in California found that adolescents with autism or developmental disability were less likely to see an OB/GYN or be prescribed contraception compared with their typically developing peers. This study identified disparities present in reproductive healthcare for this population, despite higher rates of menstrual-related diagnoses.
Ames JL, Anderson MC, Cronbach E, et al. Reproductive healthcare in adolescents with autism and other developmental disabilities. Am J Obstet Gynecol 2024;230:546.e1-546.e14.
Several studies have demonstrated disparities in reproductive healthcare for adults with developmental disabilities (DD). This includes access to family planning services, routine gynecologic care, and preventive services such as cervical cancer screening.1-4 There also are commonly held misconceptions regarding the sexuality of people with disabilities, such as the idea that they are asexual or hypersexual. Such beliefs perpetuate a lack of appropriate sexual and reproductive healthcare and education within this population.
A study from 2020 addressing sexual health topics among teens with autism found that almost 40% of teens in the study received no sex education in their schools.5,6 The lack of discussions about sexual health and safety may contribute to the fact that people with autism and DD are more likely to experience sexual victimization and abuse.7,8 Studies have shown reproductive healthcare disparities for adults with disabilities and higher rates of menstrual-related diagnoses among those with autism and DD, but limited research has been done on how adolescents with disabilities are accessing reproductive healthcare.9,10 This study addresses that gap.
This study included 700 adolescents with autism, 836 adolescents with DD, and 2,187 adolescents with typical development from the ages of 14-18 years. The cohort was drawn from a larger sample of 10,541 adolescents who were continuously enrolled (> 6 months/year) in the Kaiser Permanente Northern California (KPNC) healthcare system during the years 2000 to 2017. To be included in the autism or DD groups, participants had to have relevant diagnoses recorded in the KPNC electronic health record on at least two separate occasions. Diagnoses of autism spectrum disorder, Asperger’s disorder, and pervasive developmental disorder not otherwise specified met criteria for the autism group. Those in the other DD group had diagnoses including cerebral palsy, intellectual disability, and/or genetic conditions associated with DD, such as Down syndrome. Individuals in the typical development group did not meet criteria for the autism or DD group and were matched 4:1 on age and Kaiser membership length to their peers in the autism group.
The study looked at the association of autism and DD with the prevalence of menstrual disorders and healthcare use variables, as compared with typically developing peers. Menstrual disorders and reproductive health conditions were identified using diagnosis codes and included dysmenorrhea, amenorrhea, polycystic ovarian syndrome (PCOS), premenstrual syndrome, urinary tract infection (UTI), and laboratory tests for sexually transmitted infection (STI) screening. Healthcare use variables included outpatient visits to an OB/GYN or primary care, hormonal contraceptive use, screening for STIs, and provider specialty type providing the contraception. Contraceptive use was identified using diagnosis and procedure codes, and examined by method type.
The investigators used a modified Poisson regression to estimate crude and adjusted relative risk (aRR) for menstrual disorders, reproductive health conditions, and healthcare use by group (autism, DD, typically developing peers). Models were adjusted for birth year, race and ethnicity, insurance type, and frequency of primary care use during ages 14 to 18 years. Models for menstrual-related conditions also were adjusted for patient visits to the OB/GYN. Hormonal contraceptive use among individuals with a menstrual disorder such as dysmenorrhea were examined separately.
Adolescents in the sample were born between 1985 and 1989. Key demographic differences were noted between groups. Adolescents with autism were more likely to be non-Hispanic white than the other groups. The autism and DD groups were more likely to be enrolled in Medicaid than the typically developing group.
Compared with the typically developing group, the autism (aRR, 1.20; 95% confidence interval [CI], 1.08-1.34) and DD (aRR, 1.16; 95% CI, 1.04-1.28) groups were significantly more likely to have diagnoses of menstrual disorders. Compared with the typically developing group, the autism (aRR, 1.75; 95% CI, 1.42-2.15) and DD (aRR, 1.23; 95% CI, 1.00-1.52) groups were more likely to have PCOS. Premenstrual syndrome also was higher among the autism (aRR, 3.18; 95% CI, 1.97-5.14) and DD (aRR, 1.72; 95% CI, 0.99-2.97) groups. UTI was statistically less likely among autism (aRR, 0.43; 95% CI, 0.32-0.58) and DD (aRR, 0.70; 95% CI, 0.56-0.88) groups when compared with the typically developing group. STI rates in the autism and DD groups were too low for regression analyses; rates were < 1% compared to 3.1% in the typically developing group.
When compared with the typically developing group, the autism (aRR, 0.69; 95% CI, 0.61-0.78) and DD groups (aRR, 0.66; 95% CI, 0.58-0.75) were significantly less likely to visit an OB/GYN during their adolescent years, although those with autism and DD who did go to an OB/GYN or who used hormonal contraception tended to first use these services at a younger age than their typically developing peers.
When compared with the typically developing group, the autism (aRR, 0.73; 95% CI, 0.65-0.81) and DD groups (aRR, 0.67; 95% CI, 0.61-0.75) also were significantly less likely to use hormonal contraception. Among adolescents with menstrual disorders, those in the autism and DD groups were less likely than typically developing peers to use hormonal contraception (55.4% vs. 53.9% vs. 63.7%, respectively; P < 0.02). The same was true for those with premenstrual syndrome in the autism and DD groups compared with typically developing peers (63.2% vs. 60.9% vs. 85.3%, respectively; P < 0.04). The types of contraception varied between groups as well, with a higher use of progestin injectables in the autism (aRR, 1.25; 95% CI, 0.87-1.79) and DD groups (aRR, 1.21; 95% CI, 0.85-1.72) compared with typically developing peers and lower use of intrauterine devices within the autism (aRR, 0.40; 95% CI, 0.21-0.78) and DD (aRR, 0.26; 95% CI, 0.13-0.55) groups. Oral contraceptive pills were the most prescribed method (28.3% vs. 25.8% vs. 38%, respectively; P < 0.0001), and primary care providers were the most common prescribing providers among all groups. Additionally, the autism and DD groups were 60% less likely than the typically developing group to be screened for STIs (P < 0.0001).
COMMENTARY
This study found disparities in reproductive healthcare access and use of contraception among adolescents with autism and DD, despite the increased prevalence of menstrual-related diagnoses in these groups. A major limitation of the study is the lack of information about sexual activity, which potentially would help to inform the lower screening rates for STIs, the lower prevalence of STIs and UTIs, and lower rates of contraception being prescribed. Past studies also have found higher rates of menstrual-related diagnoses among people with autism and DD and lower rates of contraception receipt.2,9,10 Other studies also have shown that reproductive healthcare disparities for people with disabilities persist into adulthood.1,3,4
The findings in this study demonstrate a need to address these existing reproductive healthcare gaps for adolescents with autism and DD. Gynecologic visits with adolescents in this population should address the patient’s understanding of their reproductive health, healthy relationships and consent, and how menstruation is affecting their life.6,11 These conversations aid in abuse prevention, empowerment of patients through knowledge about their bodies and the pubertal transition, and adequate management of menstrual-related pain or discomfort.
To help reduce the reproductive health disparities for adolescents with autism and DD, providers should consider following the American College of Obstetricians and Gynecologists’ recommendations of having an initial reproductive healthcare visit with adolescents aged 13-15 years.12 For adolescents with disabilities, these conversations could include a parent for support if deemed appropriate. This visit does not require a pelvic exam. These topics need to be addressed, since adolescents with disabilities require reproductive healthcare just as much as their typically developing peers. As seen in this study, adolescents most commonly are prescribed contraception by their primary care provider, so reproductive health conversations should take place in those settings as well.
Educational initiatives and guidelines for OB/GYNs on treating patients with DD and autism would be beneficial, since specific training on caring for this patient population is not commonplace. Among physicians, there are decreased levels of comfort and confidence treating the reproductive health of patients with disabilities, indicating a need for additional training. A study from 2018 found that contraceptive counseling was less likely to occur with patients who have disabilities. It also found that less than 20% of OB/GYNs felt “definitely” adequately equipped to manage pregnancy of patients with disability.13
It is clear from existing research and the results of this study that more attention and action is needed to address the reproductive healthcare gaps present for adolescents and adults with autism and DD. This is especially necessary given that this population of patients experiences more menstrual-related disorders and is taught less about their own reproductive health.
REFERENCES
- Mosher W, Bloom T, Hughes R, et al. Disparities in receipt of family planning services by disability status: New estimates from the National Survey of Family Growth. Disabil Health J 2017;10:394-399.
- Mitchell L, Vellanki B, Tang L, et al. Contraceptive provision to women with intellectual and developmental disabilities enrolled in Medicaid. Obstet Gynecol 2023;142:1477-1485.
- Andiwijaya FR, Davey C, Bessame K, et al. Disability and participation in breast and cervical cancer screening: A systematic review and meta-analysis. Int J Environ Res Public Health 2022;19:9465.
- Zerbo O, Qian Y, Ray T, et al. Health care service utilization and cost among adults with autism spectrum disorders in a U.S. integrated health care system. Autism Adulthood 2019;1:27-36.
- Gougeon NA. Sexuality and autism: A critical review of selected literature using a social-relational model of disability. American Journal of Sexuality Education 2010;5:328-361. https://doi.org/10.1080/15546128.2010.527237
- Graham Holmes L, Shattuck PT, Nilssen AR, et al. Sexual and reproductive health service utilization and sexuality for teens on the autism spectrum. J Dev Behav Pediatr 2020;41:667-679.
- Tomsa R, Gutu S, Cojocaru D, et al. Prevalence of sexual abuse in adults with intellectual disability: Systematic review and meta-analysis. Int J Environ Res Public Health 2021;18:1980.
- Cheak-Zamora NC, Teti M, Maurer-Batjer A, et al. Sexual and relationship interest, knowledge, and experiences among adolescents and young adults with autism spectrum disorder. Arch Sex Behav 2019;48:2605-2615.
- Hamilton A, Marshal MP, Murray PJ. Autism spectrum disorders and menstruation. J Adolesc Health 2011;49:443-445.
- Kyrkou M. Health issues and quality of life in women with intellectual disability. J Intellect Disabil Res 2005;49:770-772.
- Quint EH. Adolescents with special needs: Clinical challenges in reproductive health care. J Pediatr Adolesc Gynecol 2016;29:2-6.
- American College of Obstetricians and Gynecologists’ Committee on Adolescent Health Care. The initial reproductive health visit: ACOG Committee Opinion, Number 811. Obstet Gynecol 2020;136:e70-e80.
- Taouk LH, Fialkow MF, Schulkin JA. Provision of reproductive healthcare to women with disabilities: A survey of obstetrician-gynecologists’ training, practices, and perceived barriers. Health Equity 2018;2:207-215.
