Menstruation is a biological process, which can be irregular, painful, and co-occur with fatigue, social withdrawal, and increased emotions. There is some evidence to suggest that Autistic people experience menstruation differently from non-Autistic people.
Methods:
This systematic review (PROSPERO registration: CRD42023399674) searched four databases in February 2023. We used thematic synthesis to analyze qualitative studies of experiences related to menstruation for Autistic people and people providing support to Autistic people. We also appraised the quality of studies with a Critical Appraisal Skills Programme (CASP) checklist.
Results:
Our thematic synthesis of 12 (eight peer-reviewed; four gray literature) sources identified differing priorities between parents, professionals, and Autistic people. Autistic people reported physical, emotional, and social impacts of menstruation. Furthermore, there were reports of increased Autism-specific experiences during menstruation such as increased sensory sensitivities, burnout, and anxiety, which were often unseen by those who supported them. Autistic people’s menstruation priorities were obtaining knowledge and skills ahead of their first period. However, parents and professionals focused on external behaviors, including hygiene and obtaining independence in managing periods. Sources poorly described participant demographics and had a limited focus on Autistic perspectives.
Conclusions:
We conclude that there needs to be tailored support to meet the needs of both Autistic individuals and those who support them. This should be informed by research which centers Autistic people.
Community Brief
Why is this an important issue?
A lot of Autism research has focused on men and boys. We know that women get worse treatment in health care, and their experiences of things like period pain can be dismissed by doctors. The health care experiences of Autistic women and others assigned female at birth have only recently started to be researched. So far, Autistic people’s experiences of periods have not been reviewed.
What is the purpose of the review?
The review aimed to look at views and experiences of autism and periods from Autistic people and those who support them.
What did the authors do to review the literature?
We searched four academic databases to identify studies relevant to the review. We also searched for nonacademic sources, like blogs.
What studies did the authors find?
Through a screening process, we found 12 sources about Autistic experiences of periods. We then did a thematic synthesis to describe key themes within the texts.
In summary, what did those studies show?
We identified six themes from the included literature as follows: education and skill development, preparation, personal awareness, management, impact, and support. We found differing priorities between parents, professionals, and Autistic people when it comes to talking about, and getting support for, periods. Autistic people reported physical, emotional, social, and autism-specific differences during their period. Autistic people’s priorities were obtaining knowledge and skills ahead of time. However, parents and professionals focused on external behaviors, including hygiene and obtaining independence.
What are the remaining gaps in the literature?
The reduced focus on Autistic people’s experiences may have shaped current menstrual support for Autistic people and limited how impactful it could be. Additional research is needed to further understand gynecological experiences, especially those which are unique, for Autistic menstruators. More research is also needed to support Autistic menstruators across the lifespan. Autistic peer support and the “hidden curriculum” are both topics worthy of further exploration within the menstruation research literature.
Based on this review, what do the authors recommend?
We hope our review can lead to the development of better support for Autistic people in the lead up to, and during, their periods. This support should be informed by research, considering the differing needs of those involved. Future research and the development of supports should center the Autistic voice so it can help improve the lives of Autistic people who menstruate.
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References
1.
CritchleyHOD, BabayevE, BulunSE, et al.Menstruation: Science and society. Am J Obstet Gynecol. 2020; 223(5):624–664; doi: 10.1016/j.ajog.2020.06.004
2.
BarringtonDJ, RobinsonHJ, WilsonE, HenneganJ. Experiences of menstruation in high income countries: A systematic review, qualitative evidence synthesis and comparison to low- and middle-income countries. PLoS One. 2021; 16(7):e0255001; doi: 10.1371/journal.pone.0255001
3.
GrandiG, FerrariS, XholliA, et al.Prevalence of menstrual pain in young women: What is dysmenorrhea? J Pain Res. 2012; 5:169–174; doi: 10.2147/jpr.s30602
4.
HarderC, VelhoRV, BrandesI, SehouliJ, MechsnerS. Assessing the true prevalence of endometriosis: A narrative review of literature data. Int J Gynaecol Obstet. 2024; 167(3):883–900; doi: 10.1002/ijgo.15756
5.
KolovosG, DedesI, ImbodenS, MuellerM. Adenomyosis—A call for awareness, early detection, and effective treatment strategies: A narrative review. Healthcare. 2024; 12(16):1641; doi: 10.3390/healthcare12161641
6.
AttiaGM, AlharbiOA, AljohaniRM. The impact of irregular menstruation on health: A review of the literature. Cureus. 2023; 15(11):e49146; doi: 10.7759/cureus.49146
7.
ModzelewskiS, OraczA, ŻukowX, IłendoK, ŚledzikowkaZ, WaszkiewiczN. Premenstrual syndrome: New insights into etiology and review of treatment methods. Front Psychiatry. 2024; 15:1363875; doi: 10.3389/fpsyt.2024.1363875
8.
NillniYI, RasmussonAM, PaulEL, PinelesSL. The impact of the menstrual cycle and underlying hormones in anxiety and PTSD: What do we know and where do we go from here? Curr Psychiatry Rep. 2021; 23(2):8; doi: 10.1007/s11920-020-01221-9
9.
ParkerM, HannahM, ZiaA. “If I wasn’t a girl”: Experiences of adolescent girls with heavy menstrual bleeding and inherited bleeding disorders. Res Pract Thromb Haemost. 2022; 6(4):e12727; doi: 10.1002/rth2.12727
10.
McHughMC. Menstrual shame: Exploring the role of ‘menstrual moaning’. The Palgrave handbook of critical menstruation studies. Palgrave Macmillan; 2020:409–422:chap 32.
11.
Anne BurrowsSJ. Girls’ experiences of menarche and menstruation. Journal of Reproductive and Infant Psychology. 2006; 23(3):235–249; doi: 10.1080/02646830500165846
12.
PrinceHE, AnnisonE. The impact of menstruation on participation in adventurous activities. Sport, Education and Society. 2023; 28(7):811–823; doi: 10.1080/13573322.2022.2059756
13.
MichelJ, MettlerA, SchönenbergerS, GunzD. Period poverty: Why it should be everybody’s business. Journal of Global Health Reports. 2022; 6:6; doi: 10.29392/001c.32436
14.
CleghornE. Unwell Women: Misdiagnosis and Myth in a Man-Made World. Dutton; 2021.
15.
SebringJCH. Towards a sociological understanding of medical gaslighting in western health care. Sociol Health Illn. 2021; 43(9):1951–1964; doi: 10.1111/1467-9566.13367
16.
CelikH, Lagro-JanssenTA, WiddershovenGG, AbmaTA. Bringing gender sensitivity into healthcare practice: A systematic review. Patient Educ Couns. 2011; 84(2):143–149; doi: 10.1016/j.pec.2010.07.016
17.
HomanP. Structural sexism and health in the United States: A new perspective on health inequality and the gender system. Am Sociol Rev. 2019; 84(3):486–516; doi: 10.1177/0003122419848723
18.
HudsonN. The missed disease? Endometriosis as an example of ‘undone science’. Reprod Biomed Soc Online. 2022; 14:20–27; doi: 10.1016/j.rbms.2021.07.003
19.
AgarwalP. Hysterical: Exploding the myth of gendered emotions. Canongate; 2022.
20.
WalshC, O’ConnorP, WalshE, LydonS. A systematic review of interventions to improve healthcare experiences and access in autism. Rev J Autism Dev Disord. 2023; 10(2):185–202; doi: 10.1007/s40489-021-00279-2
21.
ShawSC, CarravallahL, JohnsonM, et al.Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults: A qualitative study. Autism. 2024; 28(7):1746–1757; doi: 10.1177/13623613231205629
22.
Malik-SoniN, ShakerA, LuckH, et al.Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatr Res. 2022; 91(5):1028–1035; doi: 10.1038/s41390-021-01465-y
23.
MorrisR, GreenblattA, SainiM. Healthcare providers’ experiences with autism: A scoping review. J Autism Dev Disord. 2019; 49(6):2374–2388; doi: 10.1007/s10803-019-03912-6
24.
HaneyJL. Autism, females, and the DSM-5: Gender bias in autism diagnosis. Social Work in Mental Health. 2016; 14(4):396–407; doi: 10.1080/15332985.2015.1031858
25.
MoseleyRL, DruceT, Turner‐CobbJM. Autism research is ‘all about the blokes and the kids’: Autistic women breaking the silence on menopause. Br J Health Psychol. 2021; 26(3):709–726; doi: 10.1111/bjhp.12477
26.
GreenRM, TraversAM, HoweY, McDougleCJ. Women and autism spectrum disorder: Diagnosis and implications for treatment of adolescents and adults. Curr Psychiatry Rep. 2019; 21(4):22; doi: 10.1007/s11920-019-1006-3
27.
Anderson-ChavarriaM. The autism predicament: Models of autism and their impact on autistic identity. Disability & Society. 2022; 37(8):1321–1341; doi: 10.1080/09687599.2021.1877117
28.
LaiM-C, SzatmariP. Sex and gender impacts on the behavioural presentation and recognition of autism. Curr Opin Psychiatry. 2020; 33(2):117–123; doi: 10.1097/YCO.0000000000000575
29.
Lockwood EstrinG, MilnerV, SpainD, HappéF, ColvertE. Barriers to autism spectrum disorder diagnosis for young women and girls: A systematic review. Rev J Autism Dev Disord. 2021; 8(4):454–470; doi: 10.1007/s40489-020-00225-8
30.
GroenmanAP, TorenvlietC, RadhoeTA, Agelink van RentergemJA, GeurtsHM. Menstruation and menopause in autistic adults: Periods of importance? Autism. 2022; 26(6):1563–1572; doi: 10.1177/13623613211059721
31.
GrantA, JonesS, WilliamsK, LeighJ, BrownA. Autistic women’s views and experiences of infant feeding: A systematic review of qualitative evidence. Autism. 2022; 26(6):1341–1352; doi: 10.1177/13623613221089374
32.
StewardR, CraneL, Mairi RoyE, RemingtonA, PellicanoE. “Life is much more difficult to manage during periods”: Autistic experiences of menstruation. J Autism Dev Disord. 2018; 48(12):4287–4292; doi: 10.1007/s10803-018-3664-0
33.
BabbarK, MartinJ, RuizJ, ParrayAA, SommerM. Menstrual health is a public health and human rights issue. Lancet Public Health. 2022; 7(1):e10–e11; doi: 10.1016/s2468-2667(21)00212-7
PerlowEJI. Adult Women with and Without Autism Spectrum Disorder: Perspectives on the Menarche/menstruation Experience. Texas Women’s University; 2019.
36.
IbrahimI. Autism Spectrum Disorder, Premenstrual Symptoms, and Premenstrual Dysphoric Disorder. California Southern University; 2021.
37.
PageMJ, McKenzieJE, BossuytPM, et al.The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ. 2021; 372:n71; doi: 10.1136/bmj.n71
38.
CampisiSC, MarchandJD, SiddiquiFJ, IslamM, BhuttaZA, PalmertMR. Can we rely on adolescents to self-assess puberty stage? A systematic review and meta-analysis. J Clin Endocrinol Metab. 2020; 105(8):2846–2856; doi: 10.1210/clinem/dgaa135
39.
LiW, LiuQ, DengX, ChenY, LiuS, StoryM. Association between obesity and puberty timing: A systematic review and meta-analysis. Int J Environ Res Public Health. 2017; 14(10):1266; doi: 10.3390/ijerph14101266
40.
ArmourM, ParryK, Al-DabbasMA, et al.Self-care strategies and sources of knowledge on menstruation in 12,526 young women with dysmenorrhea: A systematic review and meta-analysis. PLoS One. 2019; 14(7):e0220103; doi: 10.1371/journal.pone.0220103
41.
EllisR, WilliamsK, BrownA, HealerE, GrantA. A realist review of health passports for Autistic adults. PLoS One. 2023; 18(9):e0279214; doi: 10.1371/journal.pone.0279214
42.
EvansRL, HarrisB, OnuegbuC, GriffithsF. Systematic review of educational interventions to improve the menstrual health of young adolescent girls. BMJ Open. 2022; 12(6):e057204; doi: 10.1136/bmjopen-2021-057204
43.
Programme CAS. CASP Checklists.
44.
WoodmanC, BaillieJ, SivellS. The preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. A systematic review and thematic synthesis of the qualitative evidence. BMJ Support Palliat Care. 2016; 6(4):418–429; doi: 10.1136/bmjspcare-2014-000794
45.
ThomasJ, HardenA. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008; 8(1):45; doi: 10.1186/1471-2288-8-45
46.
FryerT. A critical realist approach to thematic analysis: Producing causal explanations. Journal of Critical Realism. 2022; 21(4):365–384; doi: 10.1080/14767430.2022.2076776
47.
ZhangT. Critical realism: A critical evaluation. Social Epistemology. 2023; 37(1):15–29; doi: 10.1080/02691728.2022.2080127
48.
WilliamsGL, EllisR, HollowayW, et al.‘Building our own house’ as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production. Autism. 2024:13623613241253014; doi: 10.1177/13623613241253014
49.
Lumivero. NVivo. 2020.
50.
GrayLJ, DurandH. Experiences of dysmenorrhea and its treatment among allistic and autistic menstruators: A thematic analysis. BMC Womens Health. 2023; 23(1):288; doi: 10.1186/s12905-023-02370-8
51.
GroveR, ClaphamH, MoodieT, GurrinS, HallG. ‘Living in a world that’s not about us’: The impact of everyday life on the health and wellbeing of autistic women and gender diverse people. Womens Health (Lond). 2023; 19:17455057231189542; doi: 10.1177/17455057231189542
CridlandEK, JonesSC, CaputiP, MageeCA. Being a girl in a boys’ world: Investigating the experiences of girls with autism spectrum disorders during adolescence. J Autism Dev Disord. 2014; 44(6):1261–1274; doi: 10.1007/s10803-013-1985-6
57.
CumminsC, PellicanoE, CraneL. Supporting minimally verbal autistic girls with intellectual disabilities through puberty: Perspectives of parents and educators. J Autism Dev Disord. 2020; 50(7):2439–2448; doi: 10.1007/s10803-018-3782-8
58.
MademtziM, SinghP, ShicF, KoenigK. Challenges of females with autism: A parental perspective. J Autism Dev Disord. 2018; 48(4):1301–1310; doi: 10.1007/s10803-017-3341-8
59.
NavotN, JorgensonAG, WebbSJ. Maternal experience raising girls with autism spectrum disorder: A qualitative study. Child Care Health Dev. 2017; 43(4):536–545; doi: 10.1111/cch.12470
60.
WhitingV. The Experiences of Puberty in Autism Spectrum Condition: Retrospective reflections from women on the Autism Spectrum. University of Bolton.; 2020. p. 1–60.
61.
BothaM, DibbB, FrostDM. “Autism is me”: An investigation of how autistic individuals make sense of autism and stigma. Disability & Society. 2022; 37(3):427–453; doi: 10.1080/09687599.2020.1822782
62.
ChapmanR, CarelH. Neurodiversity, epistemic injustice, and the good human life. Journal of Social Philosophy. 2022; 53(4):614–631; doi: 10.1111/josp.12456
63.
SinclairJ. Don’t Mourn For Us. Our Voice, 1993.
64.
BothaM, CageE. “Autism research is in crisis”: A mixed method study of researcher’s constructions of autistic people and autism research. Front Psychol. 2022; 13:1050897; doi: 10.3389/fpsyg.2022.1050897
65.
BallanMS. Parental perspectives of communication about sexuality in families of children with autism spectrum disorders. J Autism Dev Disord. 2012; 42(5):676–684; doi: 10.1007/s10803-011-1293-y
66.
SteeleL, GoldblattB. The human rights of women and girls with disabilities: Sterilization and other coercive responses to menstruation. Springer. Singapore; 2020:77–91.
67.
MichielsenK, BrockschmidtL. Barriers to sexuality education for children and young people with disabilities in the WHO European region: A scoping review. Sex Education. 2021; 21(6):674–692; doi: 10.1080/14681811.2020.1851181
68.
BennettC, HardenJ. An exploration of mothers’ attitudes towards their daughters’ menarche. Sex Education. 2014; 14(4):457–470; doi: 10.1080/14681811.2014.922862
69.
KoegelLK, DetarWJ, FoxA, KoegelRL. Romantic Relationships, Sexuality, and Autism Spectrum Disorders. Adolescents and Adults with Autism Spectrum Disorders. Springer; 2014.
70.
WalshC, LydonS, O’DowdE, O’ConnorP. Barriers to healthcare for persons with autism: A systematic review of the literature and development of a taxonomy. Dev Neurorehabil. 2020; 23(7):413–430; doi: 10.1080/17518423.2020.1716868
71.
DohertyAJ, AthertonH, BolandP, et al.Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: An integrative review. BJGP Open. 2020; 4(3):bjgpopen20X1010; doi: 10.3399/bjgpopen20x101030
72.
MemarianA, MS. Therapeutic and Ethical Dilemma of Puberty and Menstruation Problems in an Intellectually Disabled (Autistic) Female: A Case Report. Acta Med Iran. 2015; 53(10):663–666.
73.
KinnairdE, StewartC, TchanturiaK. Investigating alexithymia in autism: A systematic review and meta-analysis. Eur Psychiatry. 2019; 55:80–89; doi: 10.1016/j.eurpsy.2018.09.004
74.
LiuJ, ChenLL, ShenS, et al.Challenges in the diagnosis and management of pain in individuals with autism spectrum disorder. Rev J Autism Dev Disord. 2020; 7(4):352–363; doi: 10.1007/s40489-020-00199-7
75.
Garcia-VillamisarD, MooreD, Garcia-MartínezM. Internalizing symptoms mediate the relation between acute pain and autism in adults. J Autism Dev Disord. 2019; 49(1):270–278; doi: 10.1007/s10803-018-3765-9
76.
MasonD, InghamB, UrbanowiczA, et al.A systematic review of what barriers and facilitators prevent and enable physical healthcare services access for autistic adults. J Autism Dev Disord. 2019; 49(8):3387–3400; doi: 10.1007/s10803-019-04049-2
CostosD, AckermanR, ParadisL. Sex Roles. 2002; 46(1/2):49–59; doi: 10.1023/a:1016037618567
79.
MorganH, DurmanE, HenryK, JonesC, ByromS, LawsonWB. ). Supporting Autistic People Through Pregnancy and Childbirth. Jessica Kingsley Publishers; 2024.
80.
GrantA, GriffithsC, WilliamsK, BrownA. “It felt like I had an old fashioned telephone ringing in my breasts”: An online survey of UK Autistic birthing parents’ experiences of infant feeding. Maternal & Child Nutrition. 2024; 20(1); doi: 10.1111/mcn.13581
81.
BrownN, WilliamsR, BruinvelsG, PiaseckiJ, ForrestLJ. Teachers’ perceptions and experiences of menstrual cycle education and support in UK Schools. Front Glob Womens Health. 2022; 3:827365; doi: 10.3389/fgwh.2022.827365
MondragonNI, TxertudiMB. Understanding menstruation: Influence of gender and ideological factors. A study of young people’s social representations. Feminism & Psychology. 2019; 29(3):357–373; doi: 10.1177/0959353519836445
84.
MoyseR, PorterJ. The experience of the hidden curriculum for autistic girls at mainstream primary schools. European Journal of Special Needs Education. 2015; 30(2):187–201; doi: 10.1080/08856257.2014.986915
85.
RubinskyV, GunningJN, Cooke-JacksonA. “I thought I was dying:” (Un)supportive communication surrounding early menstruation experiences. Health Commun. 2020; 35(2):242–252; doi: 10.1080/10410236.2018.1548337
86.
HannahLA, StaggSD. Experiences of sex education and sexual awareness in young adults with autism spectrum disorder. J Autism Dev Disord. 2016; 46(12):3678–3687; doi: 10.1007/s10803-016-2906-2
87.
BjörnsdóttirK, StefánsdóttirGV. Double sexual standards: Sexuality and people with intellectual disabilities who require intensive support. Sex Disabil. 2020; 38(3):421–438; doi: 10.1007/s11195-020-09643-2
88.
HenneganJ, WinklerIT, BobelC, et al.Menstrual health: A definition for policy, practice, and research. Sex Reprod Health Matters. 2021; 29(1):1911618–1911638; doi: 10.1080/26410397.2021.1911618
89.
KohnBH, VidalP, ChiaoR, PantaloneDW, FajaS. Sexual knowledge, experiences, and pragmatic language in adults with and without autism: Implications for sex education. J Autism Dev Disord. 2023; 53(10):3770–3786; doi: 10.1007/s10803-022-05659-z
90.
NicolaidisC, KripkeCC, RaymakerD. Primary care for adults on the autism spectrum. Med Clin North Am. 2014; 98(5):1169–1191; doi: 10.1016/j.mcna.2014.06.011
91.
NicolaidisC, RaymakerD, KappSK, et al.The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism. 2019; 23(8):2007–2019; doi: 10.1177/1362361319830523
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