Pregnancy and Parenthood Among Autistic Adults: Implications for Advancing Maternal Health and Parental Well-Being

Abstract

Background:

Strikingly little research has considered how autistic adults experience pregnancy and parenthood, two key transition periods in adult development with potentially far-reaching implications for physical and psychosocial health outcomes across the lifespan. This article reviews the research on pregnancy and parenthood among autistic adults, to summarize existing research and identify future directions to advance this critical area of study.

Methods:

We conducted a systematic review of the literature on pregnancy and parenthood among autistic adults. Researchers extracted selected articles for key information, including methodology and sample size, study location, demographic characteristics of participants, measurement approaches, and key study findings.

Results:

Overall, we identified 13 studies that used a range of quantitative and qualitative approaches to study pregnancy experiences and outcomes and parenthood among autistic adults. The findings show that autistic adults (1) experience difficulties and dissatisfaction communicating with health care providers throughout pregnancy and birth, (2) are more likely to experience depression during and after pregnancy, and (3) experience higher rates of pregnancy complications, including preterm birth, cesarean delivery, and pre-eclampsia. During parenthood, autistic adults report lower parenting competence, experience parenthood as isolating, have difficulty communicating with professionals about their child and are questioned by providers about their ability to parent, experience high rates of involvement with child protective services, and express a desire for increased parenting support. Autistic adults also reported parenting strengths, including high levels of finding parenthood rewarding and putting their children's needs ahead of their own.

Conclusions:

A key limitation of the literature is the significant lack of sociodemographic diversity among participants, the small number of existing studies, and reliance on cross-sectional mono-method designs. Future research should be conducted in partnership with autistic adults to develop assessment and intervention approaches for supporting pregnancy health and parental well-being among diverse and underserved communities.

Lay summary

Why is this topic important?

Very little is known about how autistic adults experience pregnancy and parenthood. Better understanding these experiences is important, because pregnancy and parenthood are key transition periods in adult development that are associated with a range of health outcomes later in life.

What is the purpose of this article?

This article reviews the existing research on pregnancy and parenthood among autistic adults. We wanted to summarize what is already known, evaluate how that knowledge was created, and consider who has and who has not been included in this research to inform future research. We summarized 13 studies that considered pregnancy or parenthood among autistic adults.

What did the authors find about pregnancy among autistic adults?

One study used data from hospital and birth records in Sweden, and showed that autistic women experience higher rates of pregnancy complications, such as preterm birth (early delivery before 37 weeks), cesarean delivery, and pre-eclampsia (a condition defined by high blood pressure during pregnancy). Two studies had autistic and nonautistic adults fill out online surveys about their experiences, and found that autistic adults are more likely to have depression during and after pregnancy, have more difficulty interacting with health care professionals at pregnancy appointments and during the birth process, and feel that information and support services for pregnancy do not always meet their needs. Autistic women also reported that sensory differences can make health care visits during pregnancy especially difficult, and described that they may experience anxiety and confusion when interacting with health care staff.

What did the authors find about parenthood among autistic adults?

The research we reviewed showed that autistic adults experience strengths and difficulties in parenting. Many autistic adults found parenthood rewarding, but also felt isolated as parents and had difficulty communicating with health care professionals about their children. Autistic adults also had high rates of interacting with child protective services (CPS). Some research also found that autistic adults had lower self-confidence in parenting, although findings are mixed.

What are the recommendations for future research and practice?

We need to develop support strategies to promote pregnancy health and parenting satisfaction in partnership with autistic adults. For example, it may be helpful to develop communication tools that can support autistic adults during pregnancy, labor, and birth. We also recommend that future research develop questionnaires to ask autistic adults about their pregnancy and parenting experiences in sensitive ways, so that in the future providers can regularly ask autistic adults about their support needs. Most importantly, it is critical that future research also include more diverse autistic participants in their research, including racial/ethnic and sexual and gender minorities.

How will these findings help autistic adults now or in the future?

We hope that this article will help guide future research that strives to better understand how autistic adults experience pregnancy and parenthood. Ultimately, we believe this research can lead to supports and intervention strategies that can improve pregnancy health and parental well-being for autistic adults.

Introduction

Despite the increase in diagnoses of autism spectrum disorder in adulthood, there is a striking gap in our understanding of how to support quality of life for autistic adults.^1,2 Thus, advancing research and clinical practice relevant to the lived experiences of autistic adults is a critical research priority.^3–5 Despite growing evidence suggesting that autistic adults may benefit from additional support around transition periods, little empirical research has considered how autistic adults experience pregnancy and parenting.^6–8 Pregnancy and the transition to parenthood are critical windows for adult health.⁹ Given the myriad biopsychosocial changes associated with becoming a parent, this transition period greatly influences health trajectories, and known disparities in later health outcomes may be linked to risk factors originally emerging during the perinatal period.⁹ Moreover, ongoing experiences of parenthood are a critical aspect of quality of life and family functioning, given that parenting behaviors are associated with parents' own well-being as well as multiple aspects of child development and the family environment.^10–13

Although research has considered how broad disability status relates to pregnancy, little research has considered autism in particular.^14,15 For example, several critical studies have studied pregnancy and parenting outcomes among women who report any of a range of intellectual or developmental disabilities, and have found higher rates of preterm birth, low birth weight, and stillbirth, longer hospital stays and higher rates of cesarean delivery, more postpartum hospital admissions and emergency department visits, and over-representation within the child welfare system.^16–19 Although this foundational research on intellectual and developmental disabilities can inform hypotheses about the experience of pregnancy and parenthood in autism, the majority of these studies included women with a diverse range of diagnoses together as one group and little research has considered the specific and unique experiences of autistic adults. In fact, recent research on the life experiences of autistic women has highlighted that there is “virtually no” empirical research on many concerns central to women, including reproductive health and parenting.²⁰ Understanding pregnancy and parenthood are important for autistic adults of all gender identities. Whereas sex is defined by the World Health Organization as referring to biological and physiological characteristics, gender encompasses experiential, social, and cultural components, including gender identity, or the internal gender a person experiences themselves as.^21,22 Sex and gender are both dimensional and nonbinary, including experiences of having components of both, neither, or fluidity of the binary genders (“male” and “female” binary categories).^21,22

Despite the lack of research among autistic adults specifically, some existing work has considered pregnancy and parenthood in relation to subclinical autistic traits, which may be informative for understanding the experiences of autistic adults. Subclinical autistic traits are commonly referred to as the broader autism phenotype (BAP), which includes personality characteristics qualitatively similar to autism that fall below the threshold for meeting formal diagnostic criteria (i.e., pragmatic language differences, rigidity, and aloofness).²³ BAP traits predict increased risk for maternal postpartum depression.^24,25 Regarding parenting style, mothers with higher autistic traits use a more permissive parenting style with their nonautistic children, although not with their autistic children.²⁶

In addition, there is a high prevalence of co-occurring intellectual disability among autistic adults, with estimates ranging from 38% to 70%, although it is important to note that many of these prevalence estimates are derived from epidemiological research with children.^27–29 Intellectual disability is associated with heightened risk of a range of adverse pregnancy and birth outcomes.^30–34 In addition, intellectual disability is associated with differences in many domains of parenting, including heightened parenting stress, lower caregiving sensitivity related to adults' own experiences of childhood maltreatment, elevated rates of mental health difficulties and decreased social support that influence parenting, and over-representation within the CPS system.^14,35–40 Given the high co-occurrence of intellectual disability with autism, autistic adults, especially those who are not speaking and/or have cognitive differences, may share similar pregnancy and parenthood experiences.

Autistic adults also experience high rates of co-occurring attention-deficit/hyperactivity disorder (ADHD; 25.7% prevalence estimate) and mood (18.8% prevalence estimate) and anxiety disorders (17.8% prevalence estimate).⁴¹ Moreover, ADHD, mood, and anxiety diagnoses are all associated with pregnancy outcomes and parenting. For example, ADHD traits are linked with a range of adverse physical and behavioral health outcomes during pregnancy and childbirth, including unplanned and early pregnancy.^42–48 Adult ADHD traits also predict parenting across multiple domains, such as more harsh and lax parenting and lower levels of positive parenting.^49,50 Maternal depression and anxiety also predict adverse pregnancy and perinatal outcomes, as well as parenting behavior.^51–57 Although the existing literature on intellectual disability, ADHD, and depression and anxiety may inform how autistic adults also experience pregnancy and parenthood given the high co-occurrence rates of these diagnoses in autism, it is essential to understand the unique experiences of autistic adults.

Therefore, the goal of this review article is to advance understanding of how autistic adults experience pregnancy and parenthood, two critical and understudied life periods that may lead to persistent health disparities later in life.⁹ We used a systematic review approach to assess the current state of the science on pregnancy and parenthood among autistic adults. We synthesized results qualitatively, because the size of the literature was not tenable for a quantitative review or meta-analysis.^15,20 Our review focused on summarizing primary findings and on the methodological approaches, study designs, locations, and sociodemographic characteristics of participants to ascertain the representativeness of this research and inform future research directions.

Methods

To comprehensively identify relevant articles to include in the narrative review, we searched the literature systematically using a three-step process conducted independently by two researchers. First, forward and backward searching methods were conducted with core foundational review articles on wellness efforts among autistic adults identifying as women and pregnancy outcomes in relation to disability.^15,20,58 These three articles were examined for relevant citations and articles citing these review articles were searched. Second, we conducted parallel literature searches in PsychINFO and PubMed for pregnancy (using the terms “pregnancy outcomes” or “pregnancy experiences”) and for parenting (using the terms “parenthood” or “parenting experiences”) among autistic adults (specified as (adult with autism* or Asperger* or pervasive developmental disorder) or (autistic adult)). Search results were limited to those published in peer-reviewed journals in the English language. Third and finally, forward and backward searching methods were used on all selected articles to identify any additional research concerning these topics.

Inclusion criteria were that the article was written in the English language and considered any aspect of pregnancy or parenthood among autistic adults. We included any study that involved autistic adults, regardless of whether the diagnosis was formally established in the study to be inclusive of adults who self-identified as autistic, but excluded articles that only considered subclinical autistic traits among nonautistic adults. In addition, articles that involved a range of intellectual or developmental disabilities were only included if they presented results specifically for autism. Systematic or other review articles, book chapters, and dissertations/theses were not included, as our aim was to summarize the state of peer-reviewed published research in this area.

In step one (forward and backward searching of key references), 21 articles were full-text reviewed, and 5 were selected for inclusion. In step two, 791 articles were reviewed for titles/abstracts (395 identified with pregnancy search terms, 396 identified with parenting search terms), 24 of those were full-text reviewed, and 5 novel articles were identified that were not already identified in step one. In the final step three, forward and backward searching of articles selected in steps one and two yielded three additional articles. Two researchers independently conducted this search process (authors C.G.M. and E.A.D.). Initial agreement between the two coders regarding articles that met inclusion criteria was acceptable (percent agreement = 77%). Any disagreement (i.e., articles that were identified by only one of the authors) was resolved through consensus discussion. This study did not involve data collection, as such there was no Institutional Review Board approval required or obtained.

Results

Overall, our search identified 13 total articles, including 7 that considered pregnancy among autistic adults (Table 1) and 8 that concerned parenthood (Table 2).^59–71 Two articles covered both topics, and were thus summarized within both sections.^67,69 We first summarize existing research on the pregnancy period, followed by existing studies on parenthood.

Table 1.

Summary of Studies on Pregnancy Period among Autistic Adults

Refs.	N	Methodology	Location and demographics	Outcome measures	Primary findings
Lum et al.68	32	Online survey Participants were autistic women who self-reported diagnoses of autism, Asperger's syndrome, high functioning autism, or PDD-NOS.	Australia Reported participant age (range 18–64 years), education (50.1% university degree or postgraduate), and annual household income (range 0–20,000 to 150,000).	Codeveloped exploratory questionnaire on health care experiences with 5 maternity items rated on a Likert scale	Relative to 26 nonautistic participants, autistic adults reported (1) significantly lower appropriateness of information and support services for pregnancy, and (2) significantly higher problems with communication of pain, concerns, and/or needs during childbirth.
Gardner et al.62	8	Qualitative analysis of questionnaire Participants were autistic women with self-reported diagnoses of Asperger's syndrome (two had diagnosis before giving birth, four diagnosed after they gave birth, and two were self-diagnosed).	Location not reported Reported participant age (M = 39, range 27–52 years) and marital status.	Exploratory open-ended questionnaire coded for themes from pre-existing data set.	Responses from autistic adults were coded for the following broad themes regarding their experiences: (1) difficulty processing sensations during prenatal period, including negative experiences with checkups (2) sensory difficulties and desire for control during labor and birth experiences, and (3) postpartum challenges regarding adapting to motherhood and infant care. In addition, suggestions from autistic women to improve care across pre-, intra-, and postpartum periods were collected.
Rogers et al.70	1	Qualitative case study of autistic woman with formal diagnosis of Asperger syndrome (at age 17)	Australia Reported participant's age and education	Thematic analysis of case study narrative based on interviews and emails	Primary themes rated from the case study narrative included (1) communication and service difficulties (e.g., with midwives, the hospital, perinatal appointments, and child services postbirth), (2) sensory stress (e.g., during pregnancy examinations, breastfeeding, and staff interactions during birth), and (3) parenting challenges (e.g., feeling judged as incompetent by service providers).
Sundelin et al.71	1,382	Epidemiological Autism was defined according to ICD codes obtained through chart review/records (ICD-9: 299A, 299B, 299W, 299X, ICD-10: F84.0, F84.5, F84.8, F84.9)	Sweden Reported on participant's age (39.9% ≤ 24 years).	Coding of medical records from Swedish Medical Birth Registry linked with Swedish National Patient Registry	Study results examined characteristics of study participants and pregnancy outcomes for autistic adults relative to an epidemiological sample of nonautistic adults (n = 503,846). Regarding characteristics, autistic women were younger, more often primipara, and had higher rates of medication use and smoking than nonautistic women. When adjusting for other related risk factors, autistic women were more likely to experience preterm birth (primarily driven by medically indicated preterm birth), elective cesarean and/or induced delivery, and pre-eclampsia. Sensitivity analyses suggest that risk is not due to medication use among autistic women.
Litchman et al.67,a	5	Thematic analysis of personal blog posts of women who self-identified as autistic or reported a diagnosis.	Blog posts in English (no location identified) Did not report on participant demographic characteristics.	Thematic analysis of blog post themes	Study results explored reproductive health themes that were identified specifically by the autistic women, including (in)accessible motherhood, (un)supportive others during prepregnancy, feeling “different, but not different” and society questioning motherhood during prepregnancy.
Pohl et al.69,a	355	Online survey All participants had an autistic child. The autistic parent group (n = 355, 339 female gender, 2 male gender, and 14 other gender) consisted of adults who reported having a diagnosis and those who self-identified as autistic, which was also verified by AQ (10-item version) scores above the cutoff.	Primarily Western nations (United Kingdom, United States, and Australia) Reported on age, sex and gender (96.5% endorsed female gender, <1% endorsed male gender, and 4% endorsed “other” gender identity category), education, marital status or living with partner, and rate of single parenthood.	Codeveloped mixed-methods online survey; study reports on quantitative data from forced-choice items	Relative to nonautistic adults (n = 132), autistic adults reported significantly younger age at first birth and younger current age, higher rates of single parenthood, and differences in educational attainment (higher rates of completing some of an undergraduate degree, lower rates of completing a postgraduate/graduate degree). Regarding pregnancy experiences, autistic adults reported higher rates of ante- and postnatal depression, lower rates of having the birth process explained to them, and higher rates of difficulty breastfeeding for their second child only.
Donovan61	24	Qualitative interviews Participants were women who self-reported a diagnosis of autism	United Kingdom, United States, Australia, and Scotland Reported on age (range 29–65 years), race (83% identified as White), education (50% bachelor's degree or higher), and marital status.	Interpretative descriptive analysis used for coding interview transcripts	Primary themes from interview narratives included (1) difficulty communicating (e.g., during labor with health care professionals), (2) challenges in expressing how they felt (e.g., to health care professionals during and after labor), (3) being misinterpreted by health care staff (nurses), and (4) difficulty understanding what is said (e.g., problems comprehending questions nurses asked them during birth).

N, number of participants included in the study.

^a Study also appears in Table 2, as this article investigated both pregnancy-related outcomes (current table) and early motherhood/parenting (Table 2).

AQ, Autism-Spectrum Quotient; PDD-NOS, pervasive-developmental disorder, not otherwise specified.

Table 2.

Summary of Studies on Parenting Among Autistic Adults

Refs.	N	Methodology	Location and demographics	Primary outcome measures	Primary findings
Lau and Peterson (2011)65	157	Questionnaires administered to four groups: parent and child report Asperger syndrome diagnosis (n = 22, 15 mothers), spouse and child report Asperger syndrome diagnosis (n = 11, 10 mothers), child only reports Asperger syndrome diagnosis (n = 49, 36 mothers), and comparison of no one in family reports Asperger syndrome diagnosis (n = 75, 59 mothers). Diagnoses were DSM-IV Asperger syndrome from a clinician team including at least one medically trained pediatrician or psychiatrist.	Australia Reported on parent gender (described as mothers vs. fathers)	PSOC Scale	All three autistic groups showed lower parenting satisfaction than the comparison group, but did not differ from one another. Authors suggest that parental Asperger's diagnosis is not associated with lower parenting satisfaction, which instead may be more related to child diagnosis.
Lau et al. (2016)66	346	Questionnaires administered to three groups: parent and child both report diagnoses of ASD (n = 109, 80 mothers), only child reports diagnosis of ASD (n = 128, 97 mothers), and neither parent nor child reports diagnosis of ASD (n = 109, 87 mothers). Diagnoses included autistic disorder, Asperger disorder, and PDD-NOS based on DSM-IV-TR criteria provided by a clinician team independent of the research, supplemented by AQ (50-item version, total score) self-report.	Australia Reported on parent age, gender (described as male vs. female), ethnicity (White vs. non-White), marital status, and education (high school only vs. postsecondary), showing no differences across groups.	PSOC Scale	There was a main effect of group on parenting self-efficacy, with group 1 (parent and child both report diagnoses of ASD) reporting lower parenting efficacy compared with the comparison group 3 (neither parent nor child reports ASD diagnosis). Exploratory analysis of a trend-level interaction effect suggested that males in group 1 had lower self-efficacy scores but females did not. The authors suggest that autistic fathers had the lowest parental efficacy, but that autistic mothers had comparable levels of parental efficacy to the other comparison groups.
Kanfiszer et al. (2017)64	7	Semistructured interviews with women (ages 19–56 years) who had received a diagnosis of autism in adulthood (at ages 20–59 years) Diagnoses must have been received formally in adulthood ≥18 years, using either the ADOS, DISCO, or ADI-R. Participants must have been fluent in English and “not in the acute phase of a mental health condition, or under the influence of alcohol or illicit drugs.” Co-occurring diagnoses of the seven participants included borderline personality disorder, schizophrenia, bipolar disorder, depression, and attention-deficit/hyperactivity disorder.	England/United Kingdom Reported on participant age (range 20–59 years), and participants described as women (with gender identity themes explored in interview).	Multistage systematic narrative analysis to identify themes within semistructured interviews	Identified gender identity themes discussed by the autistic women, including beliefs about motherhood. The identified theme was entitled “I never had any mothering instinct,” wherein adults described feeling judged for not always having the same “maternal instinct” as nonautistic women. They endorsed concerns about the potential stress associated with motherhood.
Litchman et al. (2019)67,a	5	Thematic analysis of personal blog posts of women who identified as autistic	Blog posts in English (no location identified) Did not report on participant demographic characteristics.	Thematic analysis of blog post themes	Study results explored reproductive health themes that were identified specifically by the autistic women, including feeling “different, but not different” and society questioning motherhood during the early motherhood period.
Cribb et al. (2019)59	26	Qualitative, semistructured interviews with autistic young adults (26 boys, 2 girls, ages 16–20 years, 86% identified as White) who had initially been assessed by the research team in childhood. Participants had initially met criteria for ASD based on the ADI-R, and completed the ADOS-2 and IQ assessment (full scale IQs ranged from 62 to 130, M = 95).	Australia Reported on age (range 16–20 years), sex (boys vs. girls), race/ethnicity (86% White), and parent education as a proxy for socioeconomic status.	Thematic analysis of semistructured interviews	Identified a broad theme of valuing deep connections with others among autistic adults. Within this theme, a subtheme entitled “ambivalence about getting a partner and having children” emerged. Whereas some autistic participants expressed wanting to have children, others expressed ambivalence or disinterest in parenthood.
Griffiths et al. (2019)63	446	Online survey research 446 Adults with a self-reported diagnosis of autism participated (average age = 44 years, 40% male, 47% female, 12% nonbinary/transgender). Autism traits were measured using AQ-10.	United Kingdom, United States, Australia, New Zealand, and Canada Reported on sex and gender, (including nonbinary/transgender/other category), employment status, education, relationship status, and living situation.	Online survey consisting of a range of self-report questionnaires, including the Vulnerability Experiences Questionnaire that assessed experiences with social services regarding their children.	Autistic adults were significantly more likely (28%) than nonautistic adults (4%) to have experienced an educational, medical, or social work professional question their ability to care for their child. Relative to nonautistic adults, autistic adults had higher but not significantly different rates of CPS investigations (9% compared with 2%), having children referred to social services (14% compared with <1%), and losing custody of children (4% compared with <1%).
Dissanayake et al. (2020)60	58	Online survey Five parents self-reported diagnoses of ASD, and remaining reported having a blood relative with ASD (in all cases a child) AQ (50-item version, total score) was used as the primary independent variable Parents (49 mothers, 9 fathers) self-reported parenting style relative to a nonautistic child <18 years (all children confirmed to have low autism traits through parent report on the AQ-Child 50-item version).	Australia Reported on age and overall sample income (60% yearly income over AUD $75,000), education (68% university degree), and employment (reported as 70% “white-collar” jobs).	Online survey consisting of a range of self-report questionnaires, including PSOC Scale (parenting self-esteem), PCRI, and PNQ (exploratory survey developed for this study)	Higher parent AQ scores were correlated with lower parenting satisfaction/self-esteem on the PSOC, and with lower parental support, satisfaction, and involvement on the PCRI. However, when controlling for psychological well-being scores from the DASS-21, autism traits were no longer significantly related to these scores. Higher parent AQ scores related to more parenting difficulties on the exploratory PNQ survey, even when controlling for DASS-21 scores. Parents with high and low autistic traits differed on all subscales of the PNQ except for Affection and Danger Awareness.
Pohl et al. (2020)69,a	355	Online survey All participants had an autistic child. The autistic parent group (n = 355) consisted of adults who reported having a diagnosis and those who self-identified as autistic, which was also verified by AQ (10-item version) scores above the cutoff.	Primarily Western nations (United Kingdom, United States, and Australia) Reported on age, sex, and gender (96.5% endorsed female gender, <1% endorsed male gender, and 4% endorsed “other” gender identity category), education, marital status or living with partner, and rate of single parenthood.	Codeveloped mixed-methods online survey; study reports on quantitative data from forced-choice items	Relative to nonautistic adults (n = 132), autistic parents were less likely to endorse that they are an organized parent, can cope with the multitasking and domestic responsibilities, and put effort into child socialization. Autistic parents were more likely to have difficulty communicating with and/or end up in conflict with professionals about their child, feel unbelieved, have difficulty knowing which details are appropriate to share with professionals about their child and family, and experience anxiety that interferes with thinking and communicating clearly during interactions with professionals. Regarding the overall experience of motherhood, autistic adults were less likely to find motherhood rewarding (although 86% of autistic adults endorsed finding it rewarding) and more likely to feel isolated, be unable to turn to others for parenting support, be afraid of others judging their parenting, and feel like they are not coping in being a mother. Autistic adults reported on experiences with disclosure of their diagnosis, and endorsed the need/desire for parenting support.

^a Study also appears in Table 1, as this article investigated both pregnancy-related outcomes (Table 1) and parenting (current table).

ADI-R, Autism Diagnostic Interview-Revised; ADOS, Autism Diagnostic Observation Schedule; ASD, autism spectrum disorder; DASS-21, Depression, Anxiety, and Stress Scale; DISCO, Diagnostic Interview for Social and Communication Disorders; DSM-IV, Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition; PNQ, Parenting Needs Questionnaire; PSOC, Parenting Sense of Competence; PCRI, Parent–Child Relationship Inventory.

Pregnancy period

Measurement approaches and study design

The existing research on pregnancy among autistic women involved a range of epidemiological, quantitative, and qualitative approaches. The quantitative questionnaire approaches were codeveloped in consultation with autistic adults.^68,69 This is consistent with recent efforts to include autistic adults actively within the research process.^72,73 Each of these questionnaires was developed in an exploratory manner, which allowed for the exploration of a range of possibilities raised by autistic adults but limited comparison across studies. This research primarily used cross-sectional mono-method research designs. Participants primarily self-reported prior diagnoses or self-identified as autistic, with one study relying on diagnostic codes from medical records to define autism and one also using the Autism-Spectrum Quotient (AQ) (10-item version) to supplement self-reported autism diagnoses.^69,71

Location of study participants

The existing research on pregnancy among autistic adults has been conducted across a variety of international settings, including Australia, Sweden, Scotland, and Western nations such as the United Kingdom and United States.^61,68–71 It will be important for future study to consider differences among these settings, given that there are critical differences in national health care systems that may impact the pregnancy experience. Given that this research has been conducted within primarily Western nations, very little is known about pregnancy among autistic adults in other international contexts. Research is needed among autistic people living in rural areas as well as in countries in the global south.

Sociodemographic characteristics of study participants

The extant studies on the pregnancy period have focused exclusively on the perspectives of autistic women. For indicators of socioeconomic status (SES), education was reported on in four studies and household income in one (Table 1). Two of these studies examined demographic differences between autistic and nonautistic women, finding that autistic women were younger, more likely to be a single parent, have differences in educational attainment (higher rates of completing some of an undergraduate degree, lower rates of completing a postgraduate/graduate degree), and have higher rates of medication and smoking use.^69,71 Regarding other aspects of identity, only one study reported on racial or ethnic identity, with the majority (83%) of participants identifying as White.⁶¹ In addition, only one study reported on nonbinary gender identity.⁶⁹ Thus, there is a critical need for studies among Black, indigenous, and immigrant autistic communities, and autistic adults who identify as sexual and/or gender minorities.

Pregnancy experiences

Studies examining how autistic women experience pregnancy used mixed-method approaches (see Table 1 for summary of these studies). Two quantitative studies utilized questionnaires administered to autistic and nonautistic participants.^68,69 First, Lum et al.⁶⁸ found that relative to a nonautistic comparison group, autistic women were less likely to feel pregnancy information and support services were appropriate for their needs, and more likely to report problems communicating pain and/or needs during childbirth. Similarly, Pohl et al.⁶⁹ reported that autistic women were less likely to report having the birth process explained to them than nonautistic women, and were more likely to experience ante- and postnatal depression.

Three studies used thematic analysis to characterize the lived experiences of autistic women during pregnancy.^61,62,70 These studies found that autistic women experience sensory differences that affect all stages of pregnancy. For example, autistic women described difficulty processing sensations during the prenatal period and delivery, including during checkup appointments and the birth process, as well as during breastfeeding.^62,70 During qualitative interviews autistic women reported difficulty communicating in various settings, including about how they felt during labor with health care professionals and challenges in comprehending questions nurses asked them during birth.^61,68,69 These communication difficulties were also observed in the postpartum period, wherein autistic women reported feeling judged as incompetent or as being misinterpreted by service providers.^61,70

Pregnancy outcomes

One Swedish epidemiological study evaluated pregnancy outcomes among 1382 autistic adults compared with 503,845 nonautistic adults.⁷¹ When adjusting for other potentially confounding factors, autistic women were significantly more likely to experience preterm birth overall, primarily observed between 32 and 37 weeks gestation and for medically indicated reasons. Autistic women also were more likely to experience cesarean delivery (primarily for elective deliveries) and induced deliveries overall. Finally, autistic women were also more likely to experience pre-eclampsia during pregnancy. The odds ratios for these associations ranged from 1.25 to 1.52, suggesting small effect sizes overall.⁷⁴ No difference in risk was observed for preterm birth before 32 weeks, nonelective cesarean delivery, and several birth outcomes (stillbirth, large for gestational age, Apgar score <7 at 5 minutes).⁷¹

The mechanisms underlying the observed associations between autism and increased risk of preterm birth, pre-eclampsia, and elective cesarean delivery are unknown, which are significant knowledge gaps in need of future research. The pattern of risk was largely similar when restricted to primiparous autistic women and autistic women without medication during pregnancy. In contrast, among autistic women with psychotropic and antiepileptic medication use, elevated risk was only observed for induced delivery (according to odds ratios with and without adjusting for covariates) and pre-eclampsia (according to odds ratios without adjusting for covariates).⁷¹ Thus, the authors suggested that adverse pregnancy outcomes among autistic women may not be due to medication use, although future study in this area is needed. The increased risk for adverse pregnancy outcomes may be partially due to difficulties in communication with health care workers, a possibility that has also been raised in the qualitative perspectives of autistic women.^61,68–71 It is also possible that sensory sensitivity and difficulties adapting to change may increase stress among autistic women during pregnancy, which is compounded by stigma from the health care system, and thus be indirectly related to pregnancy complications given that prenatal stress relates to a variety of adverse birth outcomes.⁷⁵

Parenting

Measurement approaches and study design

A summary of existing research on parenting among autistic adults is presented in Table 2. The studies on parenting among autistic adults used a range of cross-sectional quantitative approaches, including exploratory questionnaires that were codeveloped with autistic adults, existing measures previously used with nonautistic adults, qualitative semistructured interviews, and thematic analysis of blog posts.^{60,63–67,69} All of these measures assessed parents' self-reported perceptions.

Location of study participants

Existing literature on how autistic adults experience parenthood has involved participants almost exclusively from Western countries, including Australia, the United Kingdom, and combinations of Western countries, including the United States, United Kingdom, Canada, Australia, and New Zealand (Table 2).^{60,63–67,69} Given that parenting values and practices are culturally laden, it will be essential for future study to evaluate parenting among autistic adults in more diverse international contexts.

Sociodemographic characteristics of study participants

Regarding gender identity, the majority of participants in the existing parenting research were identified as female, with smaller percentages of males and fathers, and only two studies reported small percentages of participants identifying outside the gender binary (i.e., as transgender, nonbinary, or selecting an “other” gender category in demographics questionnaires).^63,69 Only one study examined sex differences in parenting outcomes.⁶⁶ Furthermore, only two studies reported on parental race/ethnicity, with the majority of participants identifying as White.^59,66 Minimal sociodemographic and/or identity characteristics were reported in the other studies (Table 2). Moreover, none of the studies explicitly provided details about whether adults described themselves as biological or nonbiological parents (i.e., adoption and foster care).

Early parenthood

One study examined the experience of early motherhood and parenting as part of a broader questionnaire that included pregnancy-related experiences described earlier.⁶⁹ Autistic adults had higher rates of breastfeeding difficulty (for second children only), were less likely to say they are an organized parent, less likely to say they can cope with the multitasking and domestic responsibilities associated with parenting, and less likely to say they put effort into creating socialization opportunities for their child.⁶⁹ Regarding strengths, autistic adults were just as likely to prioritize their child's needs above their own and to look for opportunities to boost their child's self-confidence.⁶⁹ Autistic parents also endorsed a range of concerns regarding interactions with professionals, including difficulties communicating, uncertainty regarding what information is appropriate to share, and concerns about disclosing autism.⁶⁹ Autistic adults also reported significantly higher rates of having an educational, medical, or social work professional question their ability to care for their child relative to nonautistic adults.⁶³ Although the majority of autistic mothers found motherhood to be rewarding (86%), autistic mothers were less likely than nonautistic mothers to find motherhood rewarding and more likely to find motherhood isolating and be afraid of others judging their parenting.⁶⁹ The majority of autistic mothers felt they should be offered extra support in their parenting (61%).⁶⁹

Parenting competence

Two studies examined whether parental scores on the Parenting Sense of Competence (PSOC) Scale differed depending on whether the parent identifies as autistic.^65,66 First, Lau and Peterson⁶⁵ analyzed differences in PSOC scores across four groups: families wherein parent and child are both autistic (report diagnoses of Asperger syndrome), the spouse and child are both autistic, only the child is autistic, or a comparison group wherein neither child nor parent are autistic. Results indicated that all three autistic groups reported lower parenting satisfaction than the comparison group, but did not differ from one another, suggesting that parents who are autistic themselves do not experience more parenting difficulties than nonautistic parents of an autistic child.

Lau et al. (2016) built on these results by examining scores on the same measure (PSOC) across three larger groups: autistic parents with an autistic child, nonautistic parents with an autistic child, and nonautistic parents with a nonautistic child. Results showed that the group of autistic parents reported lower parenting competence than the comparison group (nonautistic parents and nonautistic children). Exploratory analyses of a trend-level interaction effect showed that autistic fathers reported lower parenting efficacy than nonautistic fathers, whereas no differences were found among autistic and nonautistic mothers.⁶⁶

Most recently, Dissanayake et al.⁶⁰ expanded on these findings further by considering additional parental outcome variables, including the PSOC as well as the Parent–Child Relationship Inventory (PCRI) and the Parenting Needs Questionnaire (PNQ). Among a sample of 58 parents of nonautistic children, Dissanayake et al.⁶⁰ considered how parental autistic traits related to parenting. Higher autistic traits, as measured by the AQ, were correlated with lower parenting scores on the PSOC, and with lower parental support, satisfaction, and involvement on the PCRI. However, these associations were not significant when controlling for parental psychological well-being, suggesting that the link between autistic traits and these dimensions of parenting may be explained by co-occurring mental health difficulties rather than autism traits per se. In contrast, higher AQ scores related to more parenting difficulties on the PNQ survey, even controlling for well-being. Parents with high and low autistic traits differed on all PNQ subscales except for Affection and Danger Awareness.⁶⁰

Discussion

Overall, this review summarizes existing research on how autistic adults experience pregnancy and parenthood. Most critically, the existing studies have almost exclusively involved adults identifying as White and the majority were conducted in Western and/or industrialized nations. This is a critical limitation requiring immediate attention in future study, especially given that prior research has shown that there are racial and ethnic disparities in birth outcomes and expenses for labor and delivery charges associated with intellectual and developmental disabilities overall.⁷⁶ Thus, there is an urgent need to expand this research area to consider the experiences of autistic adults who identify as BIPOC (Black, Indigenous, and/or People of Color), immigrant autistic communities, and adults from rural areas and more diverse international settings such as the global south. After summarizing the results of the review, we discuss limitations of the existing research and the current review strategy and conclude with future directions for this critical area of inquiry.

Regarding the experience of pregnancy, studies from primarily Western countries suggest that autistic women (1) experience difficulties and dissatisfaction communicating with health care providers throughout the pregnancy and birth process, (2) have sensory differences and needs that are not met with health care visits and appointments, and (3) are more likely to experience depression during and after pregnancy.^{61,62,67–70} Epidemiological health care data from Sweden showed that autistic women are at increased risk for adverse pregnancy outcomes, including preterm birth, cesarean delivery, and pre-eclampsia, among others.⁷¹ Thus, results support that autistic women are at risk for negative experiences throughout pregnancy, and it is essential that research strive to promote greater equity in health care within the autistic population. Given communication difficulties experienced by autistic women during labor and birth with health care professionals, future research should consider different models of communication to support autistic women during pregnancy, labor, and birth. In addition, alternative prenatal care interventions have been proposed to alleviate and address racial maternal and infant health disparities, such as the use of caregivers, including midwives and doulas (particularly those that identify as BIPOC themselves) to provide care and social support during pregnancy, birth, and the postpartum period including for breastfeeding.⁷⁷ Future study may consider these methods for autistic adults.

Several studies considered parenting among autistic adults, finding that autistic adults reported lower parenting competence, although it is unclear whether parenting difficulties are better explained by co-occurring mental health diagnoses or traits rather than autism traits per se.^60,66 Moreover, autistic parents reported significant difficulty communicating with health care professionals about their child, often experienced parenthood as isolating, frequently expressed a desire for additional parenting support, and also communicated ambivalence about the desire for parenthood.^59,64,69 Overall, these results highlight the need for increased research in this important area, to guide future intervention approaches to support meaningful parental outcomes among autistic adults.

It is essential to also consider the experiences that autistic adults with children have with social services and CPS. Griffiths et al.⁶³ found that autistic adults were significantly more likely to have experienced an educational, medical, or social work professional question their ability to care for their child. Moreover, autistic adults experienced high rates of CPS investigations (9%), having children referred to social services (14%), and losing custody of children (4%). Research, clinical services, and policy approaches to address this inequity are urgently needed to ensure that parental rights are protected for autistic adults, and that parenting capacity assessments are conducted fairly and equitably.¹⁴ For example, a landmark ruling from the US Department of Justice and US Department of Health and Human Services (2015) issued guidelines for contextually based assessments of parenting capacity that strive to identify parenting barriers and supports to identify services to support the parent beyond just parent education.^14,78

Limitations

Despite these important contributions, it is essential to also note the limitations of this review and of the existing literature. Given the scant quantitative data on these topics to date, this evidence base was not appropriate for a systematic quantitative review or meta-analysis. Thus, it is essential that future study seek to summarize this literature using quantitative approaches as this research area grows. Moreover, this review only considered articles published in the English language, which further reduces the generalizability and scope of the reviewed literature.

Regarding the existing literature, a key limitation of this research area is the lack of diversity among participants, with the majority identifying as White. Moreover, sociodemographic characteristics were severely under-reported and co-occurring diagnoses were minimally considered, reducing the generalizability of these findings to autistic adults from under-represented and marginalized groups. Inclusion of more diverse participants is critical, and comprehensive reporting of participant characteristics, such as demographic factors, gender identity, and parenting roles and identification, including whether adults describe themselves as primary caregivers is needed in future research. Given that autistic adults commonly experience co-occurring diagnoses such as intellectual disability, ADHD, and depression and anxiety, and that all of these diagnoses are associated with pregnancy and parenthood, it will be essential for future study to consider the role that co-occurring diagnoses may play in predicting adverse pregnancy or parenting experiences for autistic adults.^27–29,41 In addition, the method of establishing autism diagnoses varied in existing research, with some relying on self-identification of diagnoses and others also including self-report measures. We urge future research to be inclusive by having broad inclusion criteria, so that autistic adults may participate regardless of whether or not they have received a formal diagnosis, especially given disparities in access to diagnostic services. However, to ensure consistency and facilitate comparison across studies, future studies should explicitly report on whether and how autism diagnoses were established or how autism traits were assessed. Finally, many studies had small samples and all study designs were primarily descriptive and cross-sectional, limiting knowledge about risk and protective factors in relation to pregnancy and parenthood processes over time. To address these limitations and advance this important area of inquiry, we propose the following key recommendations for research and practice.

Research recommendations and future directions

Overall, it is critical that this research area expand to be more inclusive of under-represented autistic adults, including those who identify as BIPOC, sexual or gender minorities, and those from rural areas and understudied and under-resourced international settings. Regarding research, our key recommendations are to more routinely assess pregnancy and parenthood desire and experiences in large-scale and ongoing studies in collaboration with autistic adults, develop and validate assessment measures, and recruit and engage with more diverse participants using inclusive research strategies, among others. Clinically, it is essential to develop and pilot the use of empirically informed intervention strategies to support pregnancy health and parenting outcomes and reduce perinatal health disparities, and to develop novel ways of delivering such services remotely for autistic adults. Specific recommendations for future study are as follows:

• 1.A key question that remains unanswered is the prevalence of autistic adults who desire to be pregnant, who have been or are pregnant, who have experienced pregnancy loss, and who are parents. Research shows unplanned pregnancies are higher in ADHD, but have not yet been examined in autism.⁴⁸ Moreover, greater attention to diverse family structures and nonbiological parenthood is sorely needed. These questions would ideally be addressed using epidemiological or other large data sets, and by implementing brief questions about pregnancy and parenthood into ongoing studies of adult development in autism.
• 2.Psychometric efforts to develop reliable and valid measures, in consultation with autistic adults, for assessing pregnancy and parenthood is a critical foundation for future research. Establishing measurement invariance of existing and/or novel measures will be an important step in this process toward identifying measures that can validly be used for comparing the experiences of autistic and nonautistic adults.
• 3.Recruitment of a more diverse range of autistic participants is a critical research priority, including those who identify as racial/ethnic minorities given the lack of autism research in diverse communities and documented racial disparities in maternal health.^79–82 Moreover, high SES individuals and families are over-represented in autism research; involving underserved autistic adults is crucial, as low SES may exacerbate inequities in the health care process during pregnancy and parenthood.⁸³ It is also crucial to consider both sex and gender factors from a nonbinary perspective and to explicitly assess the pregnancy and parenthood experiences of autistic adults identifying as sexual or gender minorities.²¹ To complement the voices of autistic women, it will also be important for future study to consider the pregnancy experiences of fathers and other caregivers. Finally, inclusion of autistic adults who do not speak and those with co-occurring intellectual disability is essential, given the systematic exclusion of intellectual disability from autism research.⁸⁴
• 4.Future research on pregnancy and parenthood processes should take an ecological approach by considering factors at multiple levels of analysis that might influence these processes for autistic adults, especially given that the socioecological context is rarely considered within autistic adult outcome studies.⁸⁵ For example, considering the practices of community providers that work with autistic adults will provide an important perspective, such as primary care medical staff, gynecological specialists, and community agencies that work with parents (e.g., CPS workers and community mental health providers).
• 5.Finally, increasingly complex study designs are recommended as this literature grows, including multimethod approaches that integrate multiple measurement styles and longitudinal assessments that permit the identification of the pattern of associations over time, as well as risk and resilience factors relevant to pregnancy and parenthood.

Clinical recommendations and future directions

• 1.Given the documented difficulties associated with pregnancy and parenthood for autistic adults, who have expressed desire for additional support in these areas, developing and adapting empirically supported intervention approaches is sorely needed.⁶⁹ The development of these support programs should be developed in consultation with autistic adults and also guided by empirical data as this literature expands. For example, numerous programs exist to support caregiver mental health during pregnancy and postpartum well-being for the parent and child among nonautistic women.^86–88 Programs aimed at increasing parent knowledge of child development have been successful among autistic adults.⁸⁹ Moreover, parent training and stress reduction programs have proliferated for nonautistic caregivers, and preliminary data show that they can be successfully applied in the context of parental ADHD or intellectual disability.^90,91 It will also be important to consider alternative prenatal care interventions that seek to address racial disparities in maternal and infant health for autistic adults.⁷⁷
• 2.To increase the reach of such intervention approaches, it will be important to consider novel ways of enhancing dissemination and implementation, pending empirical validation of such approaches. For example, developing brief consultation models that can be implemented by other community providers, single-session interventions that can be delivered remotely, and telehealth or other virtual approaches are exciting possibilities for expanding the reach of such services. Moreover, considering ways of reducing health care barriers and supporting autistic adults during interactions with health care providers is an important consideration.
• 3.Finally, taking an ecological approach, it will be essential to partner with community providers to support their work with autistic adults. For example, recent research has emphasized the importance of training medical providers to support the reproductive rights of women with intellectual disability, an area that is also likely essential for autistic women.⁹² Regarding parenting, training CPS workers holds great potential, given that CPS professionals consistently cite a desire for increased training in disabilities and that caregivers with intellectual disability are over-represented in the welfare system.^19,93

Authorship Confirmation Statement

C.G.M. conceived of the article idea, led the literature search concerning pregnancy, synthesized the literature, and wrote the majority of the article. E.A.D. led the literature search concerning parenting, wrote several sections within the portions of the article on parenting, and assisted with editing the article. Both authors have reviewed and approved of the article. This article has been submitted solely to this journal and is not published, in press, nor submitted elsewhere.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

The author(s) did not receive any funding for this study.