The Autistic Parenting Journey: A Systematic Review of Qualitative Evidence and Thematic Meta-Synthesis

Protocol

We prospectively registered the protocol for this systematic review with the PROSPERO International Prospective Register of Systematic Reviews on February 19, 2024 (registration number: PROSPERO CRD42024511234).

Search strategy

We performed a preliminary search of the PubMed database to analyze titles, abstracts, and keywords and subject terms in the articles to guide the systematic search. We conducted a systematic search across four databases, including PubMed, Embase, Web of Science, and CINAHL Complete, starting from January 1, 2000, using the following search query: (autis*) AND (parent* OR mother* OR pregnan*). We chose the date of January 1, 2000, because an initial preliminary search revealed an absence of publications about parenting by people with autism spectrum disorders before this date. We intentionally designed the query to be broad, aiming to capture as many relevant publications as possible about pregnancy, childbirth, and parenthood in autistic individuals, ensuring the most comprehensive coverage possible given the limited existing literature. We used specific refiners for each database as follows: none for PubMed; sources (limited to Embase) and publication types (limited to articles and reviews) for Embase; database (limited to Web of Science Core Collection), publication types (limited to articles and review articles), and language (limited to English) for Web of Science; and sources (Exclude MEDLINE records), source types (limited to academic journals), and language (limited to English) for CINAHL Complete. In addition, we searched the reference lists of relevant studies and review articles to complement the other relevant literature. The search strategy for the databases is shown in Supplementary Data S1.

Eligibility criteria

We defined the eligibility criteria following the SPIDER framework based on PICO adapted for qualitative reviews, which includes the terms Sample, Phenomenon of Interest, Design, Evaluation, and Research type. ¹⁶ Inclusion criteria were the following: (1) sample: individuals with a clinical diagnosis of autism; (2) phenomenon of interest: pregnancy, childbirth, and parenthood; (3) design: semistructured interviews or focus groups; (4) evaluation: experiences and perspectives; and (5) research type: qualitative method using interpretative phenomenological analysis (IPA) or thematic analysis for data analysis.

The exclusion criteria encompassed the following: (1) not an article; (2) studies in languages other than English; (3) not a clinical study (for example, literature review or case report); (4) quantitative or mixed method; (5) studies focusing on one specific aspect of parenthood; (6) studies focusing on one specific period; (7) data collection using other methods than semistructured interviews and/or focus groups; (8) data analysis using other methods than IPA or thematic analysis; and (9) full text not available.

In line with the aim of our study, drawing a thematic meta-synthesis, we limited our selection of studies to qualitative ones, excluding mixed-methods (due to the difference in presentation of the results section of this type of studies and the subsequent difficulty of analyzing them in the same way as qualitative studies) and quantitative methods. We chose to restrict the inclusion criteria regarding study methodology to those offering the best possible quality and best meeting our objective of exploring parenthood in adults with autism spectrum disorder. For this reason, we included only studies using semistructured interviews or focus groups for data collection in our review because they provide rich data, ensure consistency, and leverage group dynamics for deeper insights, making them ideal for exploring complex phenomena such as parenting. Other methods, such as self-reports, are less suitable as they often focus on individual stories, which may lack comparability and generalizability. We chose to include only studies using IPA and thematic analysis for data analysis because these methods were the best fit to explore the subject of parenting among autistic individuals. Indeed, IPA provides an in-depth exploration of individual experiences, focusing on how participants make sense of their personal and social worlds, allowing a detailed examination of subjective experiences and capturing nuances that other data analysis methods might miss. Thematic analysis enables the identification of patterns among several personal reports, making this method adequate for ensuring a comprehensive synthesis regarding parenting among autistic people. Other methods, such as grounded theory (which focuses on theory generation rather than exploring existing phenomena in depth) or narrative analysis (which focuses on individual stories and personal narratives), were less suitable for our purpose. As for studies with a qualitative descriptive design, they often lack scientific rigor due to unclear decision-making processes and methodological ambiguity. The lack of transparency and precise definition of this approach, as well as the absence of clear justification for its use, limits the credibility and reproducibility of results. We chose to exclude studies focusing on one specific aspect of parenthood because we expected that several articles would provide data specifically on breastfeeding or sensory sensitivities, for example, whose results would have been difficult to synthesize with those of studies exploring parenting more broadly. These articles would merit a separate literature review. Similarly, we expected to find studies of parenting by autistic people specifically during the COVID-19 epidemic, given that this period gave rise to numerous qualitative studies focusing on the experiences of different groups of individuals and different aspects of daily life. The results of such studies would have lacked generalizability to periods outside the COVID-19 epidemic, so we chose not to include them in our literature review.

Study selection

M.P. reviewed the titles and abstracts of all results of each database for preliminary screening using eligibility criteria. After duplicates were removed, she reviewed the full texts of studies identified from this stage for secondary screening to select eligible studies for inclusion in the analysis. She then searched their reference lists to identify additional studies, which were screened for potential inclusion in the analysis following the same procedure. M.M. was not involved in the selection process.

Assessment of methodological quality of individual studies

We assessed the methodological quality of the included studies using the Critical Appraisal Skills Programme (CASP) tool for qualitative studies, which provides a systematic assessment of the reliability and validity of published articles. ¹⁷ The CASP checklist is designed to help the evaluator think about several important quality aspects in a structured way. It contains three sections (“Are the results of the study valid?”; “What are the results?”; and “Will the results help locally?”) with a total of 10 questions addressing the possibility of bias in research design, conduct, and analysis. Each question is rated “yes,” “no,” or “can’t tell,” and several prompts below each question highlight the important issues to consider. A “Comments” space allows for recording the arguments supporting the answer. We used the tool to determine if studies were at low, moderate, or high risk of bias. We graded studies fully meeting the 10 criteria as being at low risk of bias, those partially meeting the criteria as being at moderate risk of bias, and those not meeting the quality standards at all as being at high risk of bias. Given the lack of consensus about the role and function of study quality assessment as part of systematic reviews, we did not exclude articles from the review based on their rating.

Data extraction process

We extracted study characteristics from each included article using a data extraction template comprising the first author and year of publication, research objective, sample size, data collection and analysis methods, and themes of the main findings. We used a second template to record participants’ characteristics, such as the number of participants by gender, age at inclusion in the study, age at autism diagnosis, total number of children, number of children with an autism spectrum condition, and children’s ages. We imported data from the results sections of studies included in the review verbatim into a Microsoft Word sheet for analysis.

Strategy for data synthesis

We conducted an interpretive synthesis of qualitative findings from included studies following the methods of thematic synthesis described by Thomas & Harden. ¹⁸ The inductive and iterative process of thematic synthesis involved three stages as follows: coding the text line by line, crafting descriptive themes closely tied to the primary data, and engaging in interpretative development of analytical themes to generate novel explanations.

In the first step, we coded data line by line. The line-by-line coding process involved closely examining each line of the text to identify and code relevant pieces of information. Initially, each line of the textual data was read and labeled with one or several codes that capture its meaning or significance. These codes are descriptive labels that summarize the content of the line in a few words or short phrases. We also coded specific aspects of study design to identify potential biases, such as sampling methods, participant selection, data collection techniques, and the researchers’ potential influence on the findings. We reused codes from previous studies in subsequent studies, and we developed new codes as the analysis of included studies progressed. The next phase involved organizing these codes into related areas to construct descriptive themes. In the last stage, we generated analytical themes through the examination of each category and combined them when similarities were found.

Assessment of confidence in cumulative evidence

We assessed confidence in the findings following the GRADE-CERQual (Grading of Recommendations Assessment, Development, and Evaluation–Confidence in the Evidence from Reviews of Qualitative research) approach. ¹⁹ This method focuses on the following four components: the methodological limitations of included studies and, for each review finding, its coherence, adequacy, and relevance. We summarized findings in several categories within each descriptive theme. Assessing the four components for each category enabled us to grade each summarized review finding as high, moderate, low, or very low confidence.

Report of findings

We reported the findings for this review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommendations. ²⁰ Please refer to the PRISMA 2020 checklist in Supplementary Data S2.

Community involvement and reflexivity

Reflexivity, crucial in qualitative literature, involves recognizing and reflecting on how the researcher’s background, preconceptions, and behavior shape the research process. ²¹ M.P. took into account the potential influence of her insider researcher status as an autistic parent and her position as a developmental pediatrician within a university neurodevelopmental disorders assessment service in order to acknowledge and mitigate any potential biases or preconceptions that could affect her interpretation and analysis of the data.^22,23 Indeed, this dual role may have brought both a deeper understanding of the challenges faced by autistic parents and, conversely, a risk of overidentification with the participants, which could lead to biased interpretations. To address this, M.P. took deliberate moments during the research process to reflect on how this dual role might influence her interpretation of the data. By consciously examining potential biases and considering how her personal and professional experiences could shape her understanding, she aimed to mitigate the impact of any preconceived notions or emotional responses that arose during data collection and analysis. This reflective practice helped her maintain a critical perspective and ensure that the analysis remained as objective and grounded in the participants’ narratives as possible. Likewise, M.M. reflected on her clinical activity as a psychiatrist within a university department specializing in the assessment and care of autistic adults, mostly without associated intellectual developmental disorder, and their families. Her professional experience provided valuable insights into the complexities of adult autism, such as the diversity of presentations or the specific challenges faced by autistic individuals in navigating daily life and accessing appropriate support. However, this clinical background also carried the risk of introducing biases related to clinical interpretations of autistic behavior and parental experiences. Working predominantly with autistic adults in a clinical setting may have shaped her expectations about the challenges and support needs of autistic parents, possibly leading to a focus on difficulties rather than a balanced view of both challenges and strengths, which might contrast with the more holistic and nuanced understanding of parenting experiences explored in the research. To address these potential biases, M.M. made a conscious effort to separate her clinical perspective from her research role, aiming to critically examine her own assumptions and interpretations. She considered how her clinical training and experience might unduly influence her understanding of the data and counteracted these effects by regularly questioning and revisiting her interpretations. To further mitigate potential biases and ensure our perspectives did not unduly influence the analysis, we confronted our respective interpretations of the analyzed data and compared our individual insights to identify and minimize any subjective influences. This process enabled us to identify and challenge subjective influences to ensure that our interpretations remained grounded in the participants’ narratives.

In addition, we submitted our work to colleagues experienced in qualitative research and autism studies to obtain an external check on our interpretations, offering critical feedback and enhancing the credibility of our findings. Being conscious of the importance of transparency in the research process, we explicitly acknowledged our positionality as researchers and clinicians within the article and described the precautions taken to mitigate potential biases. This transparency is intended not only to strengthen the trustworthiness of our findings but also to invite readers to critically engage with our interpretations, understanding the context from which they were developed. By integrating these reflexive practices, we aimed to ensure that our analysis was as objective and comprehensive as possible, while remaining respectful of the complex realities of autistic parents’ experiences.

Description of the studies

We initially identified 35,581 articles through the search completed on March 5, 2024. We assessed 63 full-text articles for eligibility and included 6 studies (Fig. 1). All six studies originated from the United Kingdom. The characteristics of each study included are presented in Table 1. Each study comprised between 7 and 24 autistic participants (all females except three). See Table 2 for participants’ demographics.

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FIG. 1.

Flow diagram.

Quality appraisal based on the CASP tool showed that the overall quality of these six studies was moderate to high (Table 3), with five studies demonstrating a moderate risk of bias (1 or 2 items out of 10 rated as “can’t tell” or “no”) and one study (Smit 2022) ²⁴ demonstrating a low risk of bias (all items rated as “yes”). Four articles insufficiently reported how researchers had handled the effects of the study on the participants during and after the study (Dugdale 2021; Hampton 2022; Hampton 2023; Winnard 2022).^25–28 Two articles failed to address the role of the researchers’ contributions to the findings (Hampton 2022; Hwang 2023).^26,29 One article lacked rigor in data analysis (Hwang 2023). ²⁹

The GRADE-CERQual assessment of the findings showed “high confidence” (N = 23) or “moderate confidence” (N = 7) in the 30 categories (Supplementary Data S3). We noted minor concerns about coherence for seven categories, justified by data being supported by only one study in five cases. We rated adequacy as “minor concerns” for 10 categories, due to a slight poverty of data. We classified the relevance of eight categories as “minor concerns.”

Among the 63 full-text articles assessed for eligibility, we excluded 6 for using a quantitative method^{4,9,15,30–32} and none for using a mixed method. We excluded seven studies focusing on specific aspects of parenthood, such as sensory experiences,^6,33 autistic working mothers, ³⁴ experiences of infant feeding ³⁵ or breastfeeding,^36,37 and interacting with statutory services. ¹⁰ The study on autistic working mothers produced the following themes: 1. Well-being: Work gives me purpose; 2. Challenges: It’s hard being an autistic working mother; and 3. The invisible disability: Everyone thinks I look okay. The study on experiences of autistic parents interacting with statutory services regarding their autistic child identified the following themes: 1. The wider system is the problem and 2. Feeling judged and stigmatized. One of the two studies on breastfeeding proposed the following themes: 1. Intense sensory perception; 2. Focused determination; and 3. One size doesn’t fit all. One study focused on the COVID-19 epidemic period. ³⁸ We excluded four studies using methods other than semistructured interviews or focus groups for data collection;^39–42 one of these collected data from a single autistic mother and analyzed it through thematic analysis, identifying the following themes: 1. Communication and service issues with health care professionals; 2. Sensory issues; and 3. Challenges of parenting. We excluded three studies using methods other than IPA or thematic analysis for data analysis,^7,8,43 with one reporting the following themes: 1. Having difficulty communicating; 2. Feeling stressed in an uncertain environment; and 3. Being an autistic mother.

Description of the themes

We identified three analytical themes describing experiences of autistic parents as follows: 1. Parental challenges and adaptations; 2. Social relations and support; and 3. Identity and personal growth. Several descriptive themes support each analytical theme (Table 4).

Summary of findings and implications for clinical practice

Sensory and communication challenges, which are core features of the autism spectrum condition, ⁴⁴ appear to be heightened during pregnancy and childbirth, as previously reported.^5,6,33 According to Morgan’s review, ⁴⁵ autistic individuals often experience heightened sensory sensitivities that can make everyday tasks more difficult. Sensory overload from routine activities can lead to significant stress and anxiety, hindering their ability to manage these tasks effectively. This sensory overload negatively affects both their mental and physical health, contributing to chronic stress and reducing their capacity to engage in and enjoy daily activities. Furthermore, these sensory challenges can impact interactions with professionals and accessing services, as autistic parents may struggle with environments that are not sensory-friendly. This can lead to difficulties in advocating for their children and themselves, further complicating their parenting role. In our meta-synthesis, autistic mothers testify to the impact of sensory sensitivities on their ability to provide routine newborn care and carry out daily parenting tasks, suggesting the need for specific support like environmental adaptations or personal support to help manage the most sensory overwhelming tasks incumbent on a parent. In health care environments, sensory accommodations tailored to individual needs can be implemented to create a more inclusive and comfortable experience. Prior to appointments, providing patients with a sensory preferences questionnaire allows them to communicate their specific sensitivities and preferred accommodations, enabling health care providers to better adapt the environment and interactions accordingly. Offering flexible scheduling options, such as appointments during quieter times or in less crowded settings, can further reduce sensory overload in waiting areas, making the experience less overwhelming. Once in the health care facility, various environmental modifications can be made to enhance comfort. Adjustable lighting in consultation rooms, with the option to dim lights or use natural lighting, when possible, helps create a soothing atmosphere, avoiding the discomfort caused by harsh fluorescent lights. Minimizing background noise by soundproofing materials and, if necessary, white noise machines, can also significantly reduce auditory distractions. Patients should be encouraged to use noise-canceling headphones or earplugs if they find the environment overwhelming. Moreover, creating a designated quiet area in the waiting room with comfortable seating, soft lighting, and minimal decorations can offer a calm retreat for those who need a low-stimulation environment before their appointment. Additional tools and aids can be provided to support sensory regulation during visits. A sensory kit available at the reception desk, containing items such as stress balls, fidget toys, or weighted lap pads, can help patients manage anxiety and sensory overload. To effectively implement these accommodations, it is crucial to educate health care professionals about sensory processing differences and their potential impact on autistic parents.

Training should focus on practical strategies for creating a sensory-friendly environment that reduces anxiety, ultimately leading to more positive health care experiences for autistic individuals. Interactions with health care providers can lack fluidity, convey misunderstandings, and increase anxiety due to particularities of the autistic individual’s communication, ⁴⁶ particularly in the hospital setting. ⁴⁷ Autistic women advocate for clear and explicit communication, as well as sustained information on the care they receive. Several easy to set up proposals can be drawn up to fulfill this need, for example, providing a written summary of an oral interaction or what is planned for the continuation of care can ensure that autistic parents understand and retain critical information. In addition, making the patient reformulate the information given and inviting them to ask questions can verify good comprehension, which requires dedicating enough time for communication. ⁴⁸ To facilitate these interactions, health care providers can use standardized templates for communication. These could include the following elements: 1) Summary of key points: A section listing the main topics discussed during the appointment, written in simple language and avoiding medical jargon. 2) Instructions and recommendations: A clear and concise outline of any instructions or recommendations given, presented in bullet points with step-by-step guidance. 3) Next steps: A checklist of the next steps in the care plan, with specific actions and timelines to be followed by both the patient and health care provider. 4) Questions and notes: A designated space for patients to write down any questions they have or notes they want to remember, both during and after the appointment. 5) Contact information: Clear contact details of health care professionals or support services for follow-up questions or assistance. These templates should be designed to be simple and clear, using bullet points and avoiding medical jargon. In addition to written templates, digital tools such as secure messaging platforms can be utilized to share these summaries electronically, allowing patients to review the information at their own pace and refer to it as needed. Furthermore, visual aids, such as diagrams or pictograms, can be incorporated into the templates to accommodate those who may benefit from visual representations of complex information. When implementing these strategies, it is crucial to consider the cultural context. In cultures where direct communication may be less common, health care providers should ensure that their communication style aligns with cultural norms while still providing the clarity needed for autistic patients. For instance, in some cultures, written communication might need to be more formal or verbal explanations might require the presence of a family member to bridge cultural and communication gaps.

Sensory and communication challenges are part of a multitude of barriers to accessing care for autistic individuals, among which can also be mentioned struggles with attending, including a lack of predictability and the waiting room environment, doubt toward professionals who demonstrate poor awareness of autism, or resignation facing the lack of existing appropriate support. ⁴⁹ A recent systematic review indicates that health care professionals report only moderate levels of autism knowledge and self-efficacy. ⁵⁰ This lack of knowledge, as well as negative attitudes and beliefs about autistic individuals, induces discrimination in health care, prevents adequate access to necessary health care, ⁵¹ and can negatively affect the therapeutic alliance. ⁵² There is an urgent need to provide basic training about autism to every health care professional, ⁵³ as autism training programs were found to improve physician behavior and patient outcomes. ⁵⁴ Other simple adjustments can be made to improve quality of care for autistic individuals. For example, it seems important for autistic patients to work with a consistent provider whom they find familiar and trusted. ⁵⁵ Health care facilities can implement guidelines for continuity of care, ensuring that autistic patients are always seen by the same health care provider or team who are well-versed in their needs and communication preferences. This can be facilitated using patient records that highlight specific accommodations required by autistic patients. In culturally diverse settings, it may be necessary to involve cultural mediators or interpreters who are trained in autism to ensure that communication is effective and culturally sensitive.

Research has extensively shown that relatives of autistic individuals often exhibit higher rates of subclinical autistic traits, known as the “broader autism phenotype”, ⁵⁶ and potentially undiagnosed autism. ⁹ In fact, the diagnosis of a child can sometimes serve as a catalyst for diagnosing a parent, leading to the recognition that they might be on the autism spectrum. ⁵⁷ Parents of autistic children who themselves have significant autistic traits reported that interaction of their own and their children’s autistic traits can both help and hinder parent–child relationships. Their shared experience of autism facilitates mutual comprehension, but their similar cognitive functioning can induce difficulties when parent and child needs related to their autistic traits differ. ⁵⁸ In parents with high autistic traits, impaired communication, poor attention switching, and lack of imagination are related to parenting difficulties. ⁵⁹ In our meta-synthesis, autistic mothers report an enhanced emotional bond with their children, especially when these children are autistic themselves, while recognizing that this can be overwhelming. A recent study ³⁰ highlights that autistic mothers face significant stress and sensory overload when their autistic children exhibit behaviors that conflict with their own sensory processing needs, which can hinder their ability to maintain daily routines and manage parenting responsibilities effectively. Differences in communication styles and social abilities between the parent and child can exacerbate these challenges, leading to frustration for both parties. This underscores the importance of tailored support and interventions to bridge communication gaps between autistic parents and their autistic children and manage the sensory issues of each. Therefore, it is important for professionals to identify parent–child autistic dyads and consider the specific needs that potentially autistic parents can share with their autistic child or the challenges they may encounter due to their own autistic traits.

Autistic women have expressed the difficulties they faced in having to conform to neurotypical societal expectations and increased social solicitations while being pregnant. This brings to light the urgent need to destigmatize neurodivergence and not to set preconceived expectations for everyone regarding the way they communicate and approach the diverse stages in life. ⁶⁰

Anxiety co-occurs in 15%–42% of autistic adults ⁶¹ and increases during childbirth and the perinatal period, with rates approximated at 78% of women during the prenatal period, 54% at 2–3 months postbirth, and 45% at 6 months. ³¹ Feelings of anxiety can be dismissed by health care professionals due to an atypical behavioral manifestation in people with an autism spectrum condition, which tend to internalize their emotions and demonstrate poor change in facial expression. ⁸ Anticipation seems to be one of the major coping strategies used by autistic parents and could be leveraged to help reduce anxiety. Preparation for labor allows women to familiarize themselves with the labor process and environment. ⁶² Similarly, specific preparation for parenthood taking into account the autistic way of thinking and communication could reduce anxiety in the postpartum period. Despite the advent of therapeutic education programs in the last 10 years, these programs are mostly addressed to parents of children with an autism spectrum condition, and there is to our knowledge no article to date describing this type of support for autistic parents. ⁶³ Nevertheless, therapeutic patient education interventions focused on autistic adults and their relatives can improve the support provided by family and friends, as psychoeducation interventions have proven to be feasible and show encouraging results in autistic adolescents and adults.^64–66 Health care providers can develop specialized prenatal and postnatal educational programs for autistic parents, which could include detailed plans and routines for childcare, coping strategies for sensory issues, and guidelines for managing anxiety. These programs should be adaptable to different cultural contexts, ensuring that the materials and approaches are relevant to the cultural backgrounds of the parents involved.

Displaying routine in their educational approach is expected from autistic parents, as repetitive behaviors is one of the core features of the autism spectrum condition. ⁴⁴ Surprisingly, autistic mothers do not show more routine in their parenting style than do non-autistic mothers. ³¹ Providing routines should be supported, as routines are associated with positive developmental outcomes in children, covering cognitive, self-regulation, social–emotional, academic skills, and overall mental and physical health. ⁶⁷

Consistent with previous findings of difficulty with multitasking, organization, and domestic responsibilities, ⁹ autistic parents highlight the need for extra support to help manage the challenges caused by their executive functioning impairment. Concrete actions such as occasional human assistance should be discussed and proposed to support the accomplishment of daily tasks. This could include offering support services that provide assistance with household management and childcare, particularly during periods of increased stress or sensory overload. These support services should be culturally sensitive, considering the specific social and familial structures that might influence the availability and type of support needed by autistic parents in different cultural contexts.

Informal social support is known to bolster individual functioning, ⁶⁸ but autistic individuals report having few friendships or relations with individuals outside the family circle. Support groups for adults diagnosed with Asperger syndrome have been found beneficial by participants, notably for providing information and advice. ⁶⁹ This type of support could be beneficial for autistic parents when traditional young parents support groups do not fulfill their needs. Such groups should therefore be adapted to autistic participants, with highly structured activities, small groups or dyads, use of explicit language, and alternative modes of communication. ⁷⁰ Facebook autism support groups have been identified as a source of informational, social, and emotional support for autism-related users, ⁷¹ demonstrating the potential value of social media support groups for autistic parents. Health care providers can encourage participation in these groups and provide information on reputable online communities, ensuring that autistic parents have access to peer support that understands their unique experiences. In culturally diverse settings, it may be beneficial to establish support groups that cater to specific cultural communities, allowing parents to receive support from others who share their cultural background and experiences.

Some autistic parents regret that their own social difficulties restrict their children’s opportunities to socialize with their peers. As real-life autism support groups allow autistic individuals to meet in an environment that is conducive to their way of interacting with the world and their challenges, groups for children of autistic parents could take place at the same time, creating socialization occasions for children and a suitable environment for autistic parents to discuss.

Autistic parents denounce a lack of appropriate resources and difficulties accessing support for themselves, notably mental health services. They report being rejected by services because of autism co-occurring with the mental health problems for which they seek support and highlight low levels of confidence and competence among professionals involved in mental health care for autistic adults. ⁷² Parents also describe challenges in getting the right support from health care and educational systems for their autistic child. This is consistent with findings that parents feel unsupported, with no clear pathway to support following autism diagnosis and gaps in statutory services provision, with access to support depending on parents’ own learning and research about autism. ⁷³ While these difficulties are common to both autistic and non-autistic parents, autistic parents also report the specific experience of feeling judged and stigmatized for being autistic. They fear being considered less capable to parent their child and are often reluctant to disclose their diagnosis. ¹⁰ This underlines the need for a better awareness and availability of statutory services professionals toward autism, both in children and adults.

Autistic parents report a positive impact of parenthood on their personal development, but also difficulties related to the confrontation between their needs and those of their children. It has previously been reported that parenthood led parents with autistic traits to acquire skills that were limited by their autistic mode of thinking, like participating in informal conversations or becoming less rigid. Nevertheless, they also described a negative impact on their own well-being due to the overwhelming responsibilities of parenthood. ⁵⁸

It should be noted that the implementation of the proposed recommendations in health care settings should always take into account the cultural context. This involves not only adapting communication styles and support structures to align with cultural norms but also ensuring that health care providers receive training that includes cultural competence and sensitivity. By doing so, the health care system can provide more effective, inclusive, and personalized care to autistic parents, thereby improving their overall parenting experience and well-being.

Implications for future research

Literature exploring experiences of pregnancy, childbirth, and parenting among autistic individuals is scarce, despite a growing interest in recent years. Many areas remain to be explored. The physical changes during pregnancy appear to have somatic and emotional impacts related to the specific autistic perception and functioning but remain unexplored, as well as the apparent worsening of cognitive functioning and communication difficulties induced by fatigue when carrying or parenting a child. Our review included only three autistic males, whereas autistic fathers are probably at least as numerous as autistic mothers, considering the ratio of four men to one woman with autism and average or above-average intellectual abilities that are usually put forward. The underrepresentation of autistic fathers in our review limits our understanding of their unique experiences and challenges in parenthood. Future research should focus not only on women’s perspectives on parenthood but also on men’s. To address this gap, future studies should use targeted recruitment strategies to ensure a more balanced representation of autistic fathers. This could involve collaborating with autism advocacy groups and community organizations to reach a broader population of autistic men. In addition, researchers could utilize social media platforms and online communities where autistic men are active to disseminate information about studies and encourage participation. Emphasizing the need for studies specifically focusing on autistic fathers is crucial. Research should notably investigate the impact of sensory challenges on their involvement with their children. For instance, sensory withdrawal needs might affect their ability to engage fully with their children, and understanding this dynamic is essential for providing adequate support. Furthermore, exploring how autistic fathers balance their sensory needs with parenting responsibilities could offer valuable insights into developing tailored interventions and resources. Among the 63 studies we reviewed in full, including the 6 articles included in our meta-synthesis, none involved autistic parents with intellectual disability or borderline intellectual ability or at least specified this aspect in the description of the participants. It would be interesting to study this population more specifically, as these parents would likely present exacerbated but also unique and additional challenges and needs compared with autistic parents without intellectual disability or borderline intellectual ability. As the deficiencies of formal support for autistics adults and children are well known and need to be addressed, we are beginning to catch a glimpse on the importance of informal social support. Research is needed to explore in what forms and by what means this support could be set up. Very little is known about the specificities of the autistic parenting style. More awareness of the distinctions between neurotypical and autistic child-rearing approaches is needed to provide appropriate help and avoid misconceptions by professionals, notably those in social services.

The low proportion of autistic adults becoming parents, suggested by the difficulty in recruiting participants for studies exploring pregnancy, childbirth, and parenting experiences of autistic individuals, raises questions about the actual rate of autistic adults becoming parents on the one hand and the perceived barriers to parenthood they encounter on the other hand, even though autistic parents have been shown to be just as effective as neurotypical parents. Several hypotheses might explain the perceived low proportion of autistic adults becoming parents. One possibility is the issue of late diagnosis. Many autistic adults may not know they are autistic before becoming parents, which complicates the identification and reporting of parenthood rates among this population. Studies such as those by Lai et al. (2015) ⁷⁴ highlight that late diagnosis is common, and many individuals may have children before receiving an autism diagnosis, thereby making it difficult to accurately assess the proportion of autistic adults who become parents. Moreover, societal and personal barriers might also contribute to a low percentage of autistic adults becoming parents. As we saw in our meta-synthesis, autistic individuals may face significant challenges related to social interactions, sensory sensitivities, and executive functioning, which can deter them from pursuing parenthood. In addition, stigma and a lack of supportive resources could play a role in discouraging autistic adults from becoming parents.^7,75 The difficulty in recruiting participants was noted during our search and review process. Many studies struggled to include a substantial number of autistic parents, which limited the generalizability of their findings. For example, Rogers (2016) ⁴² managed to include only one autistic mother, despite a well-thought-out recruitment program. From our review, it was clear that among the 63 studies we read in full, there was consistently a low number of autistic parents included per study. To improve the inclusion of autistic parents in studies, several strategies could be considered. Researchers should work closely with autism advocacy groups and communities to build trust and encourage participation. Utilizing social media and online platforms, which are commonly used by autistic individuals, can also enhance recruitment efforts. In addition, offering flexible participation options, such as online interviews or asynchronous focus groups, might accommodate the needs and preferences of autistic parents more effectively. Another solution is to design participatory studies, where autistic individuals are involved in the development of the study. This approach could encourage autistic individuals to participate, as they would feel more included and understood. Finally, providing clear information about the study’s aims, the importance of their contribution, and ensuring a supportive and understanding research environment can help alleviate potential concerns and encourage participation. Finally, exploration is needed regarding the prevalence of autism in children of autistic adults, which appears to be significantly higher than in the general population according to the four studies included in the review reporting these data, while we found no additional evidence in the current literature. In addition, the impact of autism co-occurring in both the parent and child should be further investigated. This could potentially lead to greater acceptance of autistic traits within the family unit and help prevent the development of behavioral disorders.

Strengths and limitations

We conducted the initial identification of studies for this systematic review across four databases with an unrestrictive search query, to avoid missing out on relevant articles. We chose to only include studies collecting data through semistructured interviews or focus groups and analyzing data using IPA or thematic analysis. This has led to the exclusion of some qualitative studies, even though literature on the theme of parenthood in autism is scarce. However, of the seven studies concerned, two generated themes and these were redundant with those of the studies included in our meta-synthesis. Nevertheless, as the scientific literature on the subject of parenting by adults with autism spectrum disorders continues to expand, it would be interesting to update this review of the literature by accepting the inclusion of qualitative studies with less rigorous designs, such as self-reports or descriptive designs, in order to best capture the full range of subjective experiences of those involved, including more personal, less generalizable, but equally relevant points of view. We identified several studies using a quantitative design. Compared to qualitative studies, quantitative methods offer distinct advantages in studying the parenting experiences of autistic individuals. They provide broader generalizability by collecting data from larger samples, allowing for findings that apply to a wider population. These methods enable objective measurement and statistical analysis, revealing correlations and causations. Quantitative approaches complement qualitative insights by confirming whether personal experiences are common, facilitating trend analysis over time, and providing robust evidence for policy and practice improvements, thus advocating for better support services based on statistical findings. Although we did not identify any studies using a mixed-method approach, this design could also offer a more comprehensive understanding of autistic parenting. By combining quantitative data, which measure the prevalence and intensity of challenges encountered by autistic parents, with qualitative insights that explore personal experiences, this approach can examine various areas such as support systems, parenting styles, and the impact on children, mental health, social perceptions, or the balance between parenting and professional life. In addition, mixed-methods research can track longitudinal changes and inform policy and advocacy efforts through robust multifaceted evidence. Therefore, a more comprehensive literature review could be achieved without restrictions based on study design.

The methodology used for conducting our work complies with the highest standards. Our data analysis follows the proven method of thematic synthesis described by Thomas & Harden, ¹⁸ which is frequently used in systematic review of qualitative evidence. We assessed confidence in our findings using the GRADE-CERQual approach, and the report of findings follows the PRISMA recommendations.

Despite requiring a clinical diagnosis of autism as part of the eligibility criteria, participants were considered autistic according to varying criteria across studies. We realized that three of the studies included in our review recruited participants based partially or entirely on self-declaration of being autistic. This was the case for the two studies conducted by Hampton, where “a diagnosis of autism was established based on self-report.” However, these studies reported AQ scores between 24 and 49 for autistic participants, indicating a high probability of autism. In the study conducted by Smith, five participants were formally diagnosed, whereas four were self-diagnosed. Including self-identified individuals leaves room for the possibility that individuals incorrectly identifying themselves as autistic may have been included. In addition, the predominance of female participants, with only three male participants, as well as the fact that all the included studies are from the United Kingdom, limits the generalizability of the findings to all parents diagnosed with an autism spectrum condition. Cultural and health care system differences can significantly impact the experiences of autistic parents. For instance, in countries with different cultural attitudes toward autism, such as those involving stigma or varying degrees of acceptance, or in regions where awareness and understanding of autism are limited, autistic parents may face additional challenges. In addition, the level and type of health care and social support available can vary widely between countries, affecting access to resources, diagnosis, and support services for both parents and their children. For example, in some cultures, familial expectations and social norms may place additional pressure on autistic parents, influencing their parenting experiences and strategies. It is also important to consider how cultural beliefs about parenting roles and child-rearing practices can intersect with autism, potentially shaping the way autistic parents perceive and approach their parenting role. To date, most studies published on the topic of autistic adult parenting have been conducted in developed, English-speaking countries, predominantly in Western contexts. Future research should aim to include populations from non-Western countries to better understand the unique cultural factors that may influence the experiences of autistic parents in these regions. Gathering data from diverse cultural backgrounds would not only highlight the particularities of these populations but also allow for meaningful comparisons with the existing findings from Western countries, enriching the global understanding of autistic parenting. To gain a more nuanced understanding of these dynamics, it is essential to conduct research that includes a broader range of cultural contexts. Such comparative studies would offer valuable insights into the unique challenges and strengths of autistic parents in diverse regions and enable more accurate cross-cultural comparisons. This comprehensive approach would ultimately inform the development of culturally sensitive support interventions and policies tailored to the specific needs of autistic parents worldwide. Furthermore, the study’s scope was restricted to those parents who felt sufficiently capable of committing the time and effort required for participation. Consequently, parents facing particularly challenging circumstances may have been disinclined to participate due to apprehensions about disclosing their difficulties. Thus, the study likely reflects only the experiences of a subset within the autistic parents’ community.