Abstract
Purpose
The aim of this systematic review was to identify challenges faced by autistic women during pregnancy and birth due to sensory issues or other features of Autism Spectrum Disorder.
Methods
A systematic search of literature was conducted using Medline, PubMed, Embase, PsycINFO, CINAHL, MIDIRS, ProQuest Dissertations and Theses Global, and Open Access Theses and Dissertations. Eligible studies addressed autistic women’s pregnancy or birth experiences, and were assessed for methodological quality.
Results
The search generated 2656 results, with six meeting inclusion criteria. Data from 427 autistic participants were extracted from four qualitative and two quantitative studies for synthesis.
Conclusion
We found that the literature was exploratory and lacked focussed research questions addressing sensory issues in pregnancy. Sensory challenges were, however, identified as a key finding in all qualitative studies. Other challenges faced by autistic women during pregnancy and birth included communication issues in healthcare settings and lack of appropriate information and supports for pregnancy and birth. Implications for health professionals and challenges associated with research in this area are discussed.
Similar content being viewed by others
Notes
Identity first language (autistic person) is more often preferred over person first language (person with autism) by individuals on the autism spectrum [2, 3] and will be used throughout this article, although it is acknowledged that this does not represent the preference of all members of the autism community.
References
American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders, 5th edn. APA, Washington, DC
Kenny L, Hattersley C, Molins B, Buckley C, Povey C, Pellicano E (2015) Which terms should be used to describe autism? Perspectives from the UK autism community. Autism 20(4):442–462. https://doi.org/10.1177/1362361315588200
Bury SM, Jellett R, Spoor JR, Hedley D (2020) “It Defines Who I Am” or “It’s Something I Have”: what language do [autistic] Australian adults [on the autism spectrum] prefer? J Autism Dev Disord 2000:1–11
O’Neill M, Jones RS (1997) Sensory-perceptual abnormalities in autism: a case for more research? J Autism Dev Disord 27(3):283–293
Tavassoli T, Miller LJ, Schoen SA, Nielsen DM, Baron-Cohen S (2014) Sensory over-responsivity in adults with autism spectrum conditions. Autism 18(4):428–432
Crane L, Goddard L, Pring L (2009) Sensory processing in adults with autism spectrum disorders. Autism 13(3):215–228
Ben-Sasson A, Hen L, Fluss R, Cermak SA, Engel-Yeger B, Gal E (2009) A meta-analysis of sensory modulation symptoms in individuals with autism spectrum disorders. J Autism Dev Disord 39(1):1–11
DuBois D, Ameis SH, Lai M-C, Casanova MF, Desarkar P (2016) Interoception in autism spectrum disorder: a review. Int J Dev Neurosci 52:104–111
Failla MD, Moana-Filho EJ, Essick GK, Baranek GT, Rogers BP, Cascio CJ (2018) Initially intact neural responses to pain in autism are diminished during sustained pain. Autism 22(6):669–683
Leekam SR, Nieto C, Libby SJ, Wing L, Gould J (2007) Describing the sensory abnormalities of children and adults with autism. J Autism Dev Disord 37(5):894–910
South M, Rodgers J (2017) Sensory, emotional and cognitive contributions to anxiety in autism spectrum disorders. Front Hum Neurosci 11:20
Hwang YI, Arnold S, Srasuebkul P, Trollor J (2020) Understanding anxiety in adults on the autism spectrum: an investigation of its relationship with intolerance of uncertainty, sensory sensitivities and repetitive behaviours. Autism 24(2):411–422
Kinnealey M, Oliver B, Wilbarger P (1995) A phenomenological study of sensory defensiveness in adults. Am J Occup Ther 49(5):444–451
Pellicano E, Dinsmore A, Charman T (2014) What should autism research focus upon? Community views and priorities from the United Kingdom. Autism 18(7):756–770
Maenner MJ (2020) Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 Sites, United States, 2016. MMWR Surveillance Summaries 69
Loomes R, Hull L, Mandy WPL (2017) What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. J Am Acad Child Adolesc Psychiatry 56(6):466–474
Allely CS (2019) Understanding and recognising the female phenotype of autism spectrum disorder and the “camouflage” hypothesis: a systematic PRISMA review. Adv Autism 5(1):14–37. https://doi.org/10.1108/AIA-09-2018-0036
Lai M-C, Lombardo MV, Auyeung B, Chakrabarti B, Baron-Cohen S (2015) Sex/gender differences and autism: setting the scene for future research. J Am Acad Child Adolesc Psychiatry 54(1):11–24
Green RM, Travers AM, Howe Y, McDougle CJ (2019) Women and autism spectrum disorder: diagnosis and implications for treatment of adolescents and adults. Curr Psychiatry Rep 21(4):22
Watkins EE, Zimmermann ZJ, Poling A (2014) The gender of participants in published research involving people with autism spectrum disorders. Res Autism Spectrum Disord 8(2):143–146. https://doi.org/10.1016/j.rasd.2013.10.010
Philip RCM, Dauvermann MR, Whalley HC, Baynham K, Lawrie SM, Stanfield AC (2012) A systematic review and meta-analysis of the fMRI investigation of autism spectrum disorders. Neurosci Biobehav Rev 36(2):901–942. https://doi.org/10.1016/j.neubiorev.2011.10.008
Halladay AK, Bishop S, Constantino JN, Daniels AM, Koenig K, Palmer K, Messinger D, Pelphrey K, Sanders SJ, Singer AT (2015) Sex and gender differences in autism spectrum disorder: summarizing evidence gaps and identifying emerging areas of priority. Mol Autism 1(6):1–5
Taylor E, Holt R, Tavassoli T, Ashwin C, Baron-Cohen S (2020) Revised scored Sensory Perception Quotient reveals sensory hypersensitivity in women with autism. Mol Autism 11(1):1–13
Lai M-C, Lombardo MV, Pasco G, Ruigrok AN, Wheelwright SJ, Sadek SA, Chakrabarti B, Baron-Cohen S (2011) A behavioral comparison of male and female adults with high functioning autism spectrum conditions. PLoS ONE 6(6):e20835
Moseley RL, Hitchiner R, Kirkby JA (2018) Self-reported sex differences in high-functioning adults with autism: a meta-analysis. Mol Autism 9(1):33
Hamilton A, Marshal MP, Murray PJ (2011) Autism spectrum disorders and menstruation. J Adolesc Health 49(4):443–445
Burke LM, Kalpakjian CZ, Smith YR, Quint EH (2010) Gynecologic issues of adolescents with Down syndrome, autism, and cerebral palsy. J Pediatr Adolesc Gynecol 23(1):11–15
Obaydi H, Puri B (2008) Prevalence of premenstrual syndrome in autism: a prospective observer-rated study. J Int Med Res 36(2):268–272
Steward R, Crane L, Roy EM, Remington A, Pellicano E (2018) “Life is much more difficult to manage during periods”: autistic experiences of menstruation. J Autism Dev Disord 48(12):4287–4292
Moseley RL, Druce T, Turner-Cobb JM (2020) “When my autism broke”: A qualitative study spotlighting autistic voices on menopause. Autism. https://doi.org/10.1177/1362361319901184
Kamysheva E, Wertheim EH, Skouteris H, Paxton SJ, Milgrom J (2009) Frequency, severity, and effect on life of physical symptoms experienced during pregnancy. J Midwifery Womens Health 54(1):43–49
Nazik E, Eryilmaz G (2014) Incidence of pregnancy-related discomforts and management approaches to relieve them among pregnant women. J Clin Nurs 23(11–12):1736–1750
Beebe KR, Gay CL, Richoux SE, Lee KA (2017) Symptom experience in late pregnancy. J Obstet Gynecol Neonatal Nurs 46(4):508–520
Wadephul F, Glover L, Jomeen J (2019) Conceptualising women’s perinatal well-being: a systematic review of theoretical discussions. Midwifery 81:102598
Cameron EL (2014) Pregnancy and olfaction: a review. Front Psychol 5:67
Faas MM, Melgert BN, de Vos P (2010) A brief review on how pregnancy and sex hormones interfere with taste and food intake. Chemosens Percept 3(1):51–56
Weenen H, Olsen A, Nanou E, Moreau E, Nambiar S, Vereijken C, Muhardi L (2019) Changes in taste threshold, perceived intensity, liking, and preference in pregnant women: a literature review. Chemosens Percept 12(1):1–17
Choo E, Dando R (2017) The impact of pregnancy on taste function. Chem Senses 42(4):279–286
Robledo J, Donnellan A, Strandt-Conroy K (2012) An exploration of sensory and movement differences from the perspective of individuals with autism. Front Integrat Neurosci. https://doi.org/10.3389/fnint.2012.00107
Elwin M, Ek L, Schröder A, Kjellin L (2012) Autobiographical accounts of sensing in Asperger syndrome and high-functioning autism. Arch Psychiatr Nurs 26(5):420–429
Hodgkinson EL, Smith DM, Wittkowski A (2014) Women’s experiences of their pregnancy and postpartum body image: a systematic review and meta-synthesis. BMC Pregnancy Childbirth 14(1):330
Talmon A, Ginzburg K (2018) “Who does this body belong to?” The development and psychometric evaluation of the Body Experience during Pregnancy Scale. Body Image 26:19–28
DiPietro JA, Ghera MM, Costigan K, Hawkins M (2004) Measuring the ups and downs of pregnancy stress. J Psychosom Obstet Gynecol 25(3–4):189–201
Malm M-C, Hildingsson I, Rubertsson C, Rådestad I, Lindgren H (2016) Prenatal attachment and its association with foetal movement during pregnancy: a population based survey. Women Birth 29(6):482–486
Downes MJ, Brennan ML, Williams HC, Dean RS (2016) Development of a critical appraisal tool to assess the quality of cross-sectional studies (AXIS). BMJ Open 6(12):e011458. https://doi.org/10.1136/bmjopen-2016-011458
Critical Appraisal Skills Programme (2018) CASP Qualitative Checklist. https://casp-uk.net/casp-tools-checklists/. Accessed 23 May 2020
Rogers C, Lepherd L, Ganguly R, Jacob-Rogers S (2017) Perinatal issues for women with high functioning autism spectrum disorder. Women Birth 30(2):e89–e95. https://doi.org/10.1016/j.wombi.2016.09.009
Center for Evidence Based Management (2014) Critical Appraisal Checklist for a Case Study. https://www.cebma.org. Accessed 23 May 2020
Burton T (2016) Exploring the experiences of pregnancy, birth and parenting of mothers with autism spectrum disorder. D.Clin.Psy., Staffordshire University (United Kingdom), Ann Arbor
Lum M, Garnett M, O’Connor E (2014) Health communication: a pilot study comparing perceptions of women with and without high functioning autism spectrum disorder. Res Autism Spect Disord 8(12):1713–1721. https://doi.org/10.1016/j.rasd.2014.09.009
Donovan J (2020) Childbirth experiences of women with autism spectrum disorder in an acute care setting. Nurs Womens Health 24(3):165–174. https://doi.org/10.1016/j.nwh.2020.04.001
Pohl AL, Crockford SK, Blakemore M, Allison C, Baron-Cohen S (2020) A comparative study of autistic and non-autistic women’s experience of motherhood. Mol Autism 11(1):3. https://doi.org/10.1186/s13229-019-0304-2
Gardner M, Suplee PD, Bloch J, Lecks K (2016) Exploratory study of childbearing experiences of women with Asperger syndrome. Nurs Womens Health 20(1):28–37. https://doi.org/10.1016/j.nwh.2015.12.001
Booth T, Murray AL, McKenzie K, Kuenssberg R, O’Donnell M, Burnett H (2013) Brief report: an evaluation of the AQ-10 as a brief screening instrument for ASD in adults. J Autism Dev Disord 43(12):2997–3000
Raymaker DM, McDonald KE, Ashkenazy E, Gerrity M, Baggs AM, Kripke C, Hourston S, Nicolaidis C (2016) Barriers to healthcare: instrument development and comparison between autistic adults and adults with and without other disabilities. Autism 21(8):972–984. https://doi.org/10.1177/1362361316661261
Turner L (2017) Supporting women with autism during pregnancy, birth and beyond. Am Nurse 27(4):462–466
Taylor M (2014) Caring for a woman with autism in early labour. Br J Midwif 22(7):514–518
Bloch JR, Lecks KJ, Suplee PD (2012) Caring for women with Asperger’s syndrome during the childbearing cycle. Nursing of autism spectrum disorder: evidence-based integrative care across the lifespan. Springer, New York, pp 265–291
Wood EB, Halverson A, Harrison G, Rosenkranz A (2019) Creating a sensory-friendly pediatric emergency department. J Emerg Nurs 45(4):415–424
Nicolaidis C, Raymaker DM, Ashkenazy E, McDonald KE, Dern S, Baggs AEV, Kapp SK, Weiner M, Boisclair WC (2015) “Respect the way I need to communicate with you”: healthcare experiences of adults on the autism spectrum. Autism 19(7):824–831. https://doi.org/10.1177/1362361315576221
Hobel CJ, Goldstein A, Barrett ES (2008) Psychosocial stress and pregnancy outcome. Clin Obstet Gynecol 51(2):333–348. https://doi.org/10.1097/GRF.0b013e31816f2709
Dunkel Schetter C (2011) Psychological science on pregnancy: stress processes, biopsychosocial models, and emerging research issues. Annu Rev Psychol 62:531–558
Hollocks MJ, Lerh JW, Magiati I, Meiser-Stedman R, Brugha TS (2019) Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis. Psychol Med 49(4):559–572. https://doi.org/10.1017/S0033291718002283
George R, Stokes MA (2018) A quantitative analysis of mental health among sexual and gender minority groups in ASD. J Autism Dev Disord 48(6):2052–2063
Koning SM, Ehrenthal DB (2019) Stressor landscapes, birth weight, and prematurity at the intersection of race and income: elucidating birth contexts through patterned life events. SSM Popul Health 8:100460. https://doi.org/10.1016/j.ssmph.2019.100460
Sundelin HE, Stephansson O, Hultman CM, Ludvigsson JF (2018) Pregnancy outcomes in women with autism: a nationwide population-based cohort study. Clin Epidemiol 10:1817–1826. https://doi.org/10.2147/CLEP.S176910
Zerbo O, Massolo ML, Qian Y, Croen LA (2015) A study of physician knowledge and experience with autism in adults in a large integrated healthcare system. J Autism Dev Disord 45(12):4002–4014. https://doi.org/10.1007/s10803-015-2579-2
Bruder MB, Kerins G, Mazzarella C, Sims J, Stein N (2012) Brief report: the medical care of adults with autism spectrum disorders: Identifying the needs. J Autism Dev Disord 42(11):2498–2504
Funding
No funds, grants, or other support was received.
Author information
Authors and Affiliations
Contributions
PS: project conception and development, data collection and management, data analysis, and manuscript preparation. RYY: data collection and management, data analysis, and manuscript writing/editing. MHo: project conception and development, data analysis, and manuscript preparation. MHi: manuscript preparation. MAS: project conception and development, data analysis, and manuscript preparation.
Corresponding author
Ethics declarations
Conflict of interest
Priscilla Samuel, Rui Ying Yew, Merrilyn Hooley, Martha Hickey, and Mark A. Stokes declare that they have no conflict of interest.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Samuel, P., Yew, R.Y., Hooley, M. et al. Sensory challenges experienced by autistic women during pregnancy and childbirth: a systematic review. Arch Gynecol Obstet 305, 299–311 (2022). https://doi.org/10.1007/s00404-021-06109-4
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00404-021-06109-4