Abstract
Community Brief
Why is this an important issue?
There is very little research on the experiences of autistic parents. The research that does exist mainly focuses on pregnancy and the early stages of parenting. It also tends to ignore the strengths of autistic parents and just focuses on their challenges.
What was the purpose of this study?
We wanted to understand the experiences of autistic parents at all stages of the parenting journey, from pregnancy to parenting adult children. It was important to explore strengths as well as challenges.
What did the researchers do?
This study was designed and led by an autistic researcher who is also a parent. We interviewed 92 autistic parents from around the world and asked them about the challenges, strengths, and joys of parenting. We did a content analysis of the interview transcripts looking for common ideas, both ones reported in previous research and new ideas from the participants.
What were the results and conclusions of the study?
The main challenges parents experienced from outside of the parent–child relationship were lack of access to services and discrimination from professionals; and the most common internal challenge was not feeling good enough. Autistic parents identified a number of strengths, including deep understanding of their children, open and honest communication, and commitment to being a good parent. They also experienced great joy in the parenting experience.
What is new or controversial about these findings?
Many of the challenges and strengths reported by autistic parents in this study have not been researched or reported in the literature. This study challenges stereotypes about autistic parents and also questions the lack of appropriate supports available for autistic parents. Our participants showed deep connections with their children and a commitment to being good parents. However, they struggled to access the support they needed and experienced barriers, challenges, and discrimination from services and the broader community, often resulting in the reliving of trauma they experienced in their own childhood. A new overarching concept worthy of further investigation is that being an autistic parent is a lot “more” than being a non-autistic parent.
What are potential weaknesses in the study?
The majority of parents in the study were mothers, so the voices of fathers are under-represented. The study was limited to people who speak English, have internet access, and felt comfortable participating in an online or written interview.
How will these findings help autistic adults now or in the future?
The findings detail the challenges experienced by autistic parents, many of which are caused by lack of autism acceptance in the community and “caring” professions. We hope that this study informs the development of services and information tailored for autistic parents. We also hope that these findings will contribute to a conversation about the strengths of autistic parents, and address some of the negative stereotypes held by health, education, and other service providers.
Introduction
There has been a recent upsurge of academic interest in the experiences of autistic people as parents, perhaps reflecting the rise in adult diagnoses,1,2 the impacts of late diagnosis on autistic adults’ self-understanding,3-5 and recognition of the significant gaps in support for autistic adults.6,7 It likely also reflects growing recognition of the need for research into issues that are of importance to autistic people.8-10
Our 2024 systematic review identified 44 articles on the topic of autistic experiences of parenting, 28 of which were published in the 3 years preceding the conduct of the review. 11 Research on autistic parenting to date has predominantly focused on the experiences of autistic people during pregnancy, childbirth, and parenting infants, with the aforementioned review identifying only 10 autistic parents of adult children among the participants in the included qualitative studies. 11
Key challenges of autistic parents identified in the review included sensory aspects of pregnancy, childbirth, and parenting; communication challenges, particularly in relation to interactions with health professionals; social interaction with other parents; physical and emotional demands of managing family life; and dealing with exhaustion and overwhelm. 11 While, as noted, the majority of research focused on the earliest stages of the parenting journey, those studies with parents of school-aged children found that the same challenges persisted.12B13 -15
The review article found that strengths of autistic parents are less well researched, and those strengths that are identified are often reported as surprising or unexpected findings. However, qualitative studies note many strengths of autistic parents worthy of further exploration, including high levels of parent–child empathy, 16 deep understanding of their child’s needs, 17 and commitment to the well-being of their child(ren) and family. 18
More recent research into autistic people’s experiences of parenting finds similar themes, including sensory and communication challenges associated with pregnancy and birth, 19 and a strong commitment to their child’s development, while not parenting in “the same” ways as non-autistic parents. 20 Research has also continued into the impact of the COVID-19 pandemic and the associated lockdowns, on autistic families, with studies, including our own, finding both negative and positive outcomes on mental health and family interactions. 21
The predominant focus of much of the literature remains on the earlier stages of the parenting journey, and on the experiences of female-identifying parents/mothers. While more recent research has taken a more balanced and strengths-based approach, the existing body of literature, particularly in the psychology disciplines, is largely deficit focused. 11 The aim of the present study was to provide a broad perspective on the autistic parenting journey, from (pre)pregnancy through to parenting adults; and to examine both the challenges and the strengths of autistic parents.
Methods
Research design
Given the aim to canvas the journey from pregnancy onward, the approach selected was a cross-sectional cohort design, seeking to recruit participants across the various stages of parenting. Thus, interviews could primarily focus on participant’s current parenting experiences, while allowing them to reflect on salient aspects of their parenting journey to date.
We utilized a semistructured interview format, 22 which provides guided prompts alongside the flexibility for the interviewee to direct the conversation to areas of importance to them. Participants were provided with the questions in advance, enabling them to prepare for the session and thus reduce their anxiety. Participants were also given the option of providing written responses rather than participating in a spoken interview.
The study design and interview guide were informed by discussions with autistic parents and autistic researchers from the first author’s network, who were not paid for their time but participated in an ongoing informal mutual process of sharing ideas and support. Careful attention was paid to the development of the interview guide and to the conduct of the interviews, to ensure that the research did not take a deficit view of autistic parenting but rather considered all aspects, including the strengths and joys of being an autistic parent. To further ensure authentic autistic representation and consultation, participants were given the opportunity to review, reflect, expand on, and annotate their interview transcripts.
The majority of existing studies focused on specific parts of the parenting journey and, consistent with the aim of deep exploration of experiences, only one study included more than 25 participants. Our study sought to add breadth to this depth by including the voices of over 90 autistic parents across all stages of the parenting journey and a broad perspective of parenting. With a relatively large dataset for qualitative research, we selected an abductive content analysis approach 23 to do justice to the range of voices in our dataset, allowing us to move between participant language and conceptual interpretation.
The study protocol was approved by the Australian Catholic University Human Research Ethics Committee (reference number 2022-2887H) and the University of Southern Queensland Human Research Ethics Committee (reference number ETH2024-0566). a
Data collection
Following ethics approval, the study was promoted through posts on the first author’s Facebook page and sharing in autistic-only Facebook groups with admin permission. Potential participants were directed to the study’s webpage where they read the participant information sheet and completed an online consent form.
Inclusion criteria were that the person identified as autistic (diagnosed or self-identified) and were a parent (including expectant, step, adopted, and informal parent). The consent form included a drop-down question about the age of their child/ren, which allowed them to select multiple options if they had more than one child. The study was open to participants worldwide, and the consent form collected country of residence information along with a contact name and email. No other demographic information was collected formally, which allowed participants to spontaneously share what they felt was relevant as part of the free-flowing conversation within the interviews.
The interviews followed best practice for interviewing autistic participants,24,25 which included allowing participants to choose from a range of formats, having the questions and prompts visible on screen, allowing the participant to determine the video settings, offering regular breaks, and reinforcing the voluntary and confidential nature of the interview. A total of 92 autistic parents completed the study, 85 participating in spoken and seven in written interviews.
The interview guide consisted of the following six broad questions: Can you tell me a little bit about yourself and your autistic identity? Can you tell me about your children? What do you personally enjoy the most about this stage of being a parent? What do you personally find the hardest about this stage of being a parent? What do you think is your greatest strength as a parent? What do you struggle most with as a parent?
The interviews were conducted by three experienced research assistants, under the supervision of the first author. One interviewer was an autistic nonparent undertaking doctoral research in a related area, one was a non-autistic parent with a doctoral qualification in education, and one a non-autistic nonparent with an honors degree in psychology. S.T.-J. reviewed all the transcripts and/or audio-recordings in real time and provided feedback and debriefing for the interviewers.
Coding process
The interview transcripts were anonymized by assigning randomly generated pseudonyms and imported into NVivo 14. 26 Data were analyzed using qualitative content analysis, using an abductive approach23,27 that integrated both deductive and inductive coding. A set of 36 deductive codes were developed based on our systematic review on autistic parenting, 11 identifying the major themes reported as key findings across multiple studies. The 36 codes were distributed across the three focus areas: “challenges—external” (13 codes), “challenges—internal” (11 codes), and “strengths and joys” (12 codes).
The steps undertaken in the coding are outlined in the Supplementary Data. The final 102 codes were classified into categories, with between six and seven categories in each focus area.
Data analysis
Our primary analytic approach was qualitative content analysis, complemented with descriptive quantification to identify the distribution of topics within the data. We conducted frequency counts of coded segments to examine the relative prevalence of codes within and across the focus areas and compared the deductive codes drawn from the prior literature with those identified inductively from participant narratives. However, as this only tells part of the story, we also provide illustrative quotes to demonstrate some of the breadth and nuances of participants’ parenting experiences.
Researcher positionality
The first author is an autistic autism researcher and the mother of two adult autistic sons. She works as a consultant and advocate supporting autistic adults and their families. The second author is a non-autistic autism researcher and a parent, who primarily undertakes research with autistic adults. The third author is a non-autistic researcher and a parent, who also collaborates with autistic researchers. These varied perspectives were invaluable in our interpretation and understanding of the data by bringing our comparative lenses as autistic and non-autistic parents.
The three authors were consistent in their identification of codes, and coding of transcripts, once we had developed the initial coding frame. However, in the process, we identified a difference in our reading of the transcripts based on our perspectives. In the initial round of coding, S.A. (a non-autistic parent) coded a number of quotes that S.T.-J. (an autistic parent) did not. Consistently, these were words or phrases surprised S.A. by referring to the conflict between autistic needs and parenting demands or the ways that autistic parenting is made harder by society’s stigmatization and discrimination against autistic people. These same references were simply consistent with S.T.-J.’s understanding of the way the world is. On discussion between the three authors, we identified an interesting phenomenon, which is reflected on in the Discussion section.
Two autistic researchers who are also parents and were not involved in the conduct of the study were invited to provide commentary on the face value of the findings and to offer alternative or additional interpretations.
Results
Of the 92 autistic parents who participated in the study, 86 identified as a mother (93.5%), five as a father, and one as a parent. The majority resided in Australia (56.5%) and the United States (28.3%). Participants predominantly (79.5%) received an autism diagnosis as an adult, often following the diagnosis of their child(ren), and a further 18.5% self-identified as autistic. The majority (79.3%) reported having one of more autistic children; 16.3% were unsure whether their child(ren) were autistic, typically parents of infants or young children. Participants reflected the full gamut of parenting stages, from 15.2% whose oldest child was a preschooler or younger (including two pregnant with their first child) to 26.1% parenting children aged 21 years or older (including six with children in their 30s). See Table 1.
Study Participants (n = 92)
The high proportion of participants not reporting their age perhaps reflects that this is not of high salience in their self-perception, as the interview question was “Can you tell me a little bit about yourself and your autistic identity?”
Includes two currently pregnant with first child.
The results are presented for each of the following focus areas: external challenges, internal challenges, and strengths and joys. For each focus area, we first report the broad categories in order of frequency within the data, and the codes within those categories. We then describe in more detail the 10 most common codes within that focus area; while we do not think that the frequency of mention is the sole, or perhaps primary, measure of importance, we do so due to space limitations. For ease of reading, these are grouped by coding category. Illustrative quotes for all focus areas are provided in the tables.
Challenges—external to parent–child relationship
We identified 27 codes across six categories (see Supplementary Data). The most frequently coded category “support” consisted of five codes that covered issues related to lack of support, receipt of inappropriate supports, experiences of toxic supports, difficulty finding, or preference for, autistic-led support, and difficulty trusting other people with children. The category “discrimination/stigma” had five codes that addressed discrimination from the community, educators, family, health care providers, and other professionals or service providers.
“Communication” consisted of seven codes that addressed receptive and expressive communication with: health professionals about children; school about children; health professionals about self; and support services or government. “Need for advocacy” comprised four codes that covered: the feeling that education is a battle, the need for parents to take a position opposing the experts, the education system’s assumption that “adult” equals independent, and problems related to teachers’ unrealistic expectations of competence.
“Social interaction” consisted of four codes: the perceived pressure on parents to be like everyone else, difficulty forming connections with other parents, pressure to interact with other parents, and challenges associated with not understanding social norms or rules. The first, which had the most references, came from the inductive coding and the others were deductive. “Environmental” had two codes: the lack of inclusive environments and challenges related to unsupportive workplaces.
The first, second, and sixth most commonly identified codes were in the category of support, showing how salient this issue is for autistic parents. “Lack of support” were reflections on not receiving or not being able to access supports when needed. “Inappropriate supports” were discussions of supports being offered or provided that were not appropriate for autistic parents and their families, generally because they were developed by and for non-autistic people. “Toxic supports” were those provided that were physically or emotionally harmful, with a common example being “autism mom” groups ostensibly established to provide support to those parenting autistic children, which made autistic parents feel unsafe. Illustrative quotes are provided in Table 2.
Illustrative Quotes—External Challenges (Most Commonly Coded Themes)
I, inductive code; D, deductive code.
The third, fourth, eighth, and 10th most commonly identified codes were in the category of discrimination/stigma. “Discrimination from the community” reflected both parent and child experiences of bullying, exclusion, ableism, and stigma in community spaces. “Discrimination from educators” included references to their child not being able to access necessary accommodations, or lack of understanding of autism leading to punishment or exclusion. “Discrimination from family” addressed criticism of neurodivergent approaches to parenting, rejection of their child’s (and their own) diagnoses by family members, and teasing or bullying related to autistic ways of thinking and acting. “Discrimination from health care professionals” referred to negative attitudes or comments from health care providers, including derogatory comments, refusal of service, and denial of diagnosis.
The fifth most frequently used code in external challenges was “education is a battle,” which referred to autistic parents’ needing to fight the system to have their child’s needs met in education. The seventh most common code was “perceived pressure to be like everyone else,” from the “social interaction” category, which referred to the pressure of societal expectation that there is a “right” way to be a parent (and a person). The ninth was “communication with health professionals about children (receptive)”; while this code was initially identified from the literature, the content that was coded to it had a different nuance to previous studies, with participants’ reflections being less about not being able to understand the information communicated by health professionals and more about finding the information incorrect, outdated, unhelpful, or offensive.
Challenges—internal to parent–child relationship
We identified 41 codes across seven categories (see Supplementary Data). The most frequently coded category, “self-child balance,” consisted of seven codes that addressed the following: overall conflicting needs between self and child, feelings of being constantly “on,” anxiety about child’s well-being subjugating their own needs, worry that their child might be with them forever, feeling their child’s feelings, and the pressure of being their only friend.
“Am I OK? Parental well-being,” had 11 codes that addressed related issues of physical and emotional well-being: feelings of failure and being enough, energy levels and exhaustion, the impact of co-occurring conditions, overwhelm, burnout, depression, anxiety, feelings of isolation, reliving trauma, interoception issues, and worry whether their children like them. “This is hard sometimes,” consisted of seven codes that covered coping with their child’s negative behavior, setting boundaries or saying no, helping their child form friendships, supporting their child’s high needs, not being in control of their child’s behavior, sharing same challenges or “blind spots,” and (conversely) recognizing and understanding differences between their child and themself.
“Sensory issues” consisted of seven codes that covered specific sensory challenges such as dealing with auditory, tactile, olfactory, and visual input; sensory overload; managing child(ren)’s sensory issues; and conflicting sensory needs between child(ren) and parent. “Routines” consisted of three codes that addressed challenges with broad aspects of organization and executive function, difficulty establishing or following routines, and conflicting routines between child and parent. “Separation and reduced interdependence” consisted of four codes that covered challenges experienced in letting their children go as they got older, anxiety at being apart, missing feeling needed, and not being able to intervene or fix things as children get older. “Role confusion and boundaries” consisted of two codes that address the fine line between supporting and enabling their children, and blurred boundaries between being a parent or a professional.
For this focus area, we outline only the top nine codes, as after that there were three codes with an equal number of references. First was “feelings of failure—being enough,” in which parents expressed feelings of not being a good enough parent, being a failure, making the wrong parenting, or letting their child(ren) down. There were more references to this code than to all of the codes in the deductive guide in the “parental well-being” category combined. Also in this category was the inductive code “energy levels/exhaustion,” the ninth most common code, which referred to the perpetual feeling of exhaustion, which limited parents’ capacity to do all the things they wanted to do for themselves, their children, and other responsibilities. Illustrative quotes are provided in Table 3.
Illustrative Quotes—Internal Challenges (Most Commonly Coded Themes)
I, inductive code; D, deductive code.
The second, third, fifth, and seventh most represented codes were all in the category “self-child balance.” “Overall conflicting needs” referred to the conflict between the parent’s and child’s needs (e.g., conflicting activity preferences, the need for space, and alone time). “Being constantly on” referred to the constant demands of parenting, and not being able to take the time needed to rest and recover. “Anxiety about child’s well-being” included reflections on experiencing high levels of stress and anxiety about the child’s physical and emotional, and social well-being. “Subjugating own needs” referred to putting the child’s needs first in ways that meant sacrificing their own physical and emotional needs, interests, and even life goals.
“Conflicting sensory needs (between child and parent)” from the category “sensory needs” was the fourth most frequent code, and referred to clashes between parental and child sensory profiles. For example, where one was a sensory seeker and the other a sensory avoider.
The sixth and eighth most frequent codes were in the category “this is hard sometimes” and related to aspects of parent–child interaction. “Coping with child’s negative behavior” referred to challenges with managing disobedience, aggression, violence, and other negative behaviors. “Setting boundaries or saying no” related to the broader issue of finding it difficult to say no/set boundaries, including not knowing what these boundaries should be and worrying that setting them would harm the parent–child relationship.
Strengths and joys
We identified 34 codes across six categories (see Supplementary Data). The most frequently coded category, “empathy and understanding,” consisted of nine codes that addressed insight and understanding of their child; accepting their child as they are; understanding their depth of interests; empathy with their emotional, sensory, and cognitive needs; shared diagnosis (with autistic child); translating the neurotypical world; and recognition of difference between their child and themself.
“Parental joy” consisted of six codes that covered the enjoyment of watching them learn and grow, joy of connection, joy of seeing them become more independent, enjoyment of reliving childhood, joy of feeling needed, and enjoying being a single parent. “Good parenting” consisted of seven codes that addressed autistic parents’ research into best approaches for child, constant striving to do better, focus on family health and well-being, not conforming to others’ norms, adherence to structure and routine, motivation to persevere with breastfeeding, and proactivity in ensuring child’s social interaction.
“Egalitarian parenting” consisted of four codes that focused on autistic parents’ collaborative approach, open conversations, following their children’s lead, and trusting parent–child relationships. “Proactive and advocate parenting” consisted of five codes that addressed advocacy in education and schools, proactivity with education options and solutions, advocacy in health care, innovation in finding solutions, and advocacy in the community. “Parental growth” consisted of three codes related to how parenting benefited them as individuals in learning about themselves, children helping with challenges, and providing an opportunity to develop new skills.
The most commonly identified code in this area was “insight and understanding,” in which parents reflected on their deep insight into their child’s needs, feelings, and experiences. Illustrative quotes are provided in Table 4.
Illustrative Quotes—Strengths and Joys (Most Commonly Coded Themes)
I, inductive code; D, deductive code.
The second and third most frequently coded were both in the “parental joy” category. “Enjoyment of watching them learn and grow,” reflected parents’ joy at seeing child learn new things, and having them share their thoughts, feelings, and experiences. “Joy of connection” included comments about the happiness experienced from a strong and genuine bond with child, the physical and emotional connection, and the feelings of unconditional love.
The fourth and eighth most common codes were in the “empathy and understanding” category, as was the first. In the “shared diagnosis with autistic child,” parents made specific reference to their shared autism diagnosis leading to a deeper understanding of and connection with their child. In the “empathy with child’s emotional needs,” parents commented on their ability to recognize and understand their child’s emotional needs, even when the child themselves was unable to identify or express these.
The “good parenting” category provided the fifth and seventh most commonly occurring codes. “Research into best approaches for child” reflected the recognized commitment of autistic parents to undertaking extensive research into best approaches to caring for their child across a range of domains, including health, education, and parenting in general. “Trying to do better” consisted of reflections on making a conscious effort to be a “better parent” (often compared with the way they were parented).
Within the “egalitarian parenting” category, “collaborative approach” (making collaborative decisions as a family and treating children as equals) and “open communications” (open and honest family communication that was both nonjudgmental and nonhierarchical, often in the context of sensitive issues) were the sixth and ninth most frequently coded, respectively.
“Advocacy in education and schools” was the 10th most frequent. This consisted of direct references to being an advocate for their child’s needs, characteristics, and communication requirements in education settings.
Discussion
The 92 parents who participated in this study represented a broad cross section of autistic experiences of parenting, from those pregnant with their first child to parents of children in their 30s. The differences between our sample and those of previous qualitative studies are important to bear in mind when considering the similarities and differences between our findings and those in the existing literature. Previous studies tended to focus on one stage of the parenting journey, typically pregnancy and childbirth or raising infant children. They also consisted of smaller groups of participants, with only four identified studies b including more than 20 participants: two studies of pregnancy and childbirth experiences28,29; one of breastfeeding experiences 18 ; and a broader study of autistic people’s COVID-19–related experiences. 12
What we expected and what we found
Across all three parenting aspects, inductive codes consistently outnumbered and were more frequently referenced than deductive codes. In addition, several of the codes previously identified in the SLR were considerably more nuanced in this larger and more diverse sample of parents.
While (as noted above) the number of references coded is not the sole measure of the importance of an issue, it is interesting to note that many of the codes in the deductive coding guide that were raised in the literature as key challenges or strengths of autistic parents were seldom mentioned by the study participants, with 12 of the 25 codes having five or less references coded. For example, despite the emphasis on sensory issues in the literature on autistic parenting, only one code in the category of “sensory needs” was represented in the top 10, and it was not one of those from the deductive coding guide.
One possible reason for this is that previous research with autistic parents has predominantly focused on limited cohorts at specific parenting stages, notably pregnancy, childbirth, and raising infants. It is also important to consider that an issue not being mentioned by an individual parent, or group of parents, does not mean it is not important; it simply means that at the time of the interview other things were more salient.
There are other possible explanations for the differences between our findings and those of previous research, including the rise in autism advocacy contributing to autistic parents’ increased reflection on and understanding of their parenting experiences, c and the autistic-led nature of our study increasing participant comfort and thus resulting in deeper discussion and greater disclosure.
A BIG concept: being an autistic parent is “More”
The overarching concept identified in our reflection on the varied perspectives of the autistic and non-autistic team members was “being an autistic parent is a lot ‘MORE’ than being a non-autistic parent.” You will see this concept woven throughout many of the internal challenges; in the ways that autistic parents juggle challenges with executive functioning, sensory hypersensitivity, and other autistic characteristics with the demands of parenting. You will also see this concept woven throughout almost all of the external challenges. Autistic parents spoke of “all the average every day parenting things (being) harder’ (Ophelia), their struggles “as a parent probably (having) to do with my neurodivergence” (Nadia), and not having access to the ways of doing things that neurotypical people do so that parenting, like other aspects of life, “is just harder when you are neurodivergent” (Christie). Future research could usefully explore differences between autistic and non-autistic parenting experiences by recruiting participants from both groups and comparing their self-reported challenges and strengths.
It is why autistic parents struggle to access the supports they need; why they experience discrimination; why they struggle to communicate with educators, health professionals, and other services; why they need to constantly advocate for themselves and their children; why social interaction is challenging; and why they find the environment hostile.
Some other big new ideas
By far the biggest individual category in the area of external challenges to parenting was support, including not being able to find or access support, being provided with inappropriate supports, and experiences of “support” that was actually harmful. A recent review of six qualitative studies, published after we completed this analysis, noted lack of support as an important finding in four of the studies, and “lack of support” was included in our deductive coding guide based on the themes reported in those studies. However, likely due to the size and diversity of our sample, we found a range of more complex and concerning issues relating to support. For example, several of the studies focused on childbirth and infancy and thus support was largely in the context of the needs of the mother29,30; whereas others focused primarily on negative and discriminatory interactions with health care providers, 17 which in our study has its own set of codes. We found that support-related issues span lack of access to a wide range of educational, health care and other supports for both parent and child, across the parenting journey—but are not limited to “lack” of support. They also include the provision of inappropriate supports, and encounters with harmful and offensive supports. The lack of focus on this in the literature perhaps reflects both the parenting stage focused on in most studies and the common methodological approaches, with many studies recruiting participants from within health care or other formal systems. The parents in this study, who are raising children across all life stages, are calling out for autistic-friendly and appropriate parenting support.
The literature told us that autistic parents would experience discrimination from educators, health care providers, and other professionals or service providers.31,32 Sadly, our findings are consistent with this expectation. In addition, our participants also report experiencing autism stigma and discrimination in the community and from their own families, reflecting on being criticized and belittled for their perceived failing as a parent or their different ways of raising their children (which are generally consistent with the way they wish they had been raised as autistic children).
The two most commonly coded challenges internal to the parent–child relationship were identified in the inductive coding, and not highlighted in our SLR. The first, feelings of not being good enough or failing as a parent, is perhaps not surprising given both the external challenges noted above and the existing evidence that many autistic people have lived their lives being told, and believing, that they are falling short of society’s expectations. This is not an entirely new finding, having been observed in several previous small-scale qualitative studies.14,16,17 However, its prominence in our study as a top-of-mind concern for this large and diverse cohort of autistic parents suggests that this is an important area for future research and for the development of supports for autistic parents.
The second, conflict between their needs as an autistic person (for space, alone time, enjoyment of their specific interests) and their child’s needs, likely serves to exacerbate these feelings of failure. This goes beyond balancing parents’ and children’s conflicting sensory needs, as previously reported by Dugdale, 17 which is a separate code in our data, and the challenges of balancing work and caregiving as an autistic person. 33 Parenting is demanding for anyone, and more so for someone whose neurotype predisposes them to being more drained by the social, physical, and cognitive demands of their environment. In this context, it is important to note that these parents also commented on subjugating their own needs (within this category) as well as to overwhelm, burnout, sensory overload, and other factors.
This is not a group of parents who neglect or ignore the needs of their children, as the stereotype suggests, resulting in many parents afraid to disclose their diagnosis for fear of stigma, discrimination, or even removal of their child.34,35 Rather, a group of parents who prioritize the needs of their children, at considerable cost to their own well-being. Further evidence of this is seen in another internal challenge identified, that of setting boundaries or saying no, with parents both finding it difficult to know what these should be and worrying that setting them will harm the parent–child relationship.
In addition to the expected strengths of autistic parenting, we identified many others that defy the negative stereotypes of autistic people. The sheer joy these parents experience in their relationship with their children shone through the interviews. The joy of seeing their child learn new things; being able to share their thoughts, feelings, and experiences; developing a strong and genuine bond with their child; and giving and receiving unconditional love.
Another significant finding was the emphasis on egalitarian parenting, with autistic parents placing great importance on treating their children as autonomous human beings with a right to their own opinions and decisions. Many participants spoke about the importance of open and honest communication, mutual respect, and making collaborative decisions as a family. While to the best of our knowledge, ours is the first study to specifically highlight and name this strength of autistic parents, we clearly see echoes of it in existing qualitative research.34,36,37
It is a two-way street
There was a clear interplay between the challenges experienced by autistic parents and the strengths they brought to, or perhaps developed for, parenting. For example, as noted above in the category of internal challenges, many parents spoke of their concerns being a good enough parent and whether they would let their children down. When asked about their strengths, many of these parents spoke at length of the conscious efforts they expend to be the best possible parent they can, constantly assessing their performance and finding ways to improve. This finding that autistic people strive for perfectionism in their parenting has been reported consistently in the literature, both in the more extensive research on the early stages of raising infants38,39 and the more limited research on raising children. 16 Thus, whether it is a “positive” should be interpreted with caution as there is an important balance between learning and growing as a human being through the experience of nurturing others, and placing expectations on oneself to perform to an unrealistic standard.
Similarly, the category “proactive and advocate parenting” arose from the references by many parents to their intense and ongoing actions to ensure that their (often autistic) children received the care, support, and resources they needed in education and health care. This need for advocacy has been noted in previous literature, 16 and in the recent qualitative meta-synthesis, 40 as a challenge facing autistic parents. While their ability to respond to this challenge is no doubt a strength of many autistic parents, it is perhaps one they would not need to expend so much energy on if “need for advocacy” was not a challenge experienced by autistic parents.
The understanding that comes with having a shared diagnosis with their child, reported by participants as a strength in this study as in previous research, 15 was also described as a challenge when parents experienced difficulty helping their child navigate problems where they share the same challenges or blind spots.
The little things also matter
As stated elsewhere in the Introduction section, we do not think that the frequency with which a code was referenced is the sole indicator of its importance. There are multiple reasons for important codes being infrequently mentioned—including some issues being parenting stage specific and the huge number of challenges (and strengths) meaning that for each individual parent only some will be covered in an individual interview. As an illustration of the former point, we note that across 28 qualitative studies included in our 2024 review, 11 there were only 10 parents of adult children, whereas our study included 30 such parents; conversely, the majority of previous studies consisted solely or primarily of parents of babies or infants, whereas these were a minority in our study. Thus, we note some interesting points raised in the interview that we believe are worthy of further exploration with autistic parents.
In the context of challenges external to the parent–child relationship, we were dismayed by the experiences relayed to us by parents in relation to their struggles interacting with governments and other “support” systems. A simple example of when the forms required to access services are so complex and confusing that autistic parents are unable to apply for things they would clearly be eligible for. Another challenge in this category is the lack of inclusive environments for autistic parents and their children—places where autistic parents can interact with other parents, services, and the broader community without fear of stigma and discrimination.
In the context of under-explored challenges internal to the parent–child relationship, we would like to highlight aspects of the autistic experience such as interoception and hyperempathy. The former means that autistic parents may not know when they are in need of medical care or understand why an aspect of their parenting experience is causing them physical discomfort. While interoception has been explored in research on the pregnancy and childbirth and breastfeeding experiences of AFAB autistic parents,41,42 our findings suggest that the challenges associated with interpreting one’s own physical and psychological sensations may continue beyond this early stage of parenting. The latter reflects that, contrary to the stereotype of autistic people lacking empathy, some of our participants reflected on feeling intense emotional and/or physical pain in response to their child’s distress.
Other important issues raised in these interviews included parenthood resulting in the reliving of childhood trauma, consistent with a recent UK study that found autistic people parented “through a lens of trauma.” 16 The dilemma of drawing the line between being a parent and being a professional in the absence of outside supports arose for many parents due to their high level of knowledge of autism broadly and their child specifically, compared with the limited knowledge of health and education professionals.
Our participants also noted many strengths and joys that they experienced as autistic parents that warrant more attention in research and in professional education. Sadly, many of the participants were hesitant to discuss their strengths and were more confident sharing their challenges. We do not believe that this reflects the actual balance of challenges versus strengths, but rather a lifetime of deficit-based messages about autism. Some of the strengths of autistic parenting that warrant more exploration include acting as a translator between the autistic child and the non-autistic world/community/family, innovation in finding alternative solutions when health care or other systems do not meet the child’s needs, and being an advocate for their child (and for autistic people more generally) in the community. Sources of parental joy for autistic people that deserve more focus include the enjoyment of reliving childhood, the joy of feeling needed, learning more about yourself, and a source of mutual support.
Limitations and Considerations
The aim of our study was to provide a broad perspective of the challenges and strengths of autistic parents across the parenting journey drawing on a large sample. A limitation of this approach is that it does not allow for in-depth analysis that would be the case with a smaller more homogeneous group of parents. However, we hope that it will encourage future research into the issues raised to explore their prevalence, impact, and solutions with subgroups of autistic parents.
We approached this research from a strengths-based perspective, with a clear goal to have an equal focus on parenting strengths and parenting challenges. However, as reflected in the results, the participants were more expressive and expansive in discussing their challenges. Many struggled to articulate their strengths, and expressed either discomfort doing so or even disbelief that they had any. Future research could usefully explore other techniques for eliciting information on the strengths of autistic parents such as asking for endorsement of a list of characteristics rather than spontaneous self-descriptions; having parents describe or record parent–child interactions in real time; or seeking the perspectives of the children of autistic parents.
Our study, like those before it, under-represents autistic fathers. 11 We do not have any easy answers to this seemingly intractable problem of recruiting autistic fathers, but note that it is an important area for future research. Our study sample predominantly consisted of participants from Australia and the United States. Future research with autistic parents from other regions could explore the ways in which parenting challenges and strengths differ between countries and cultures.
Our study included both formally diagnosed and self-identified autistic parents as we believe restricting research to individuals with a formal diagnosis risks reinforcing systemic inequities, as access to assessment is often mediated by socioeconomic privilege, health care availability, and cultural context. Thus, limiting autism research to formally diagnosed individuals serves to further silence those who are already unheard.
Our deductive coding guide was developed based on the findings from our previous SLR and represented only those themes and concepts reported as top-line findings across multiple studies. This means that some of our inductive codes reflect findings previously reported in the literature and thus not entirely novel. However, the fact that these codes were identified in only a small number of studies, and not as the major findings, but were among the most prevalent codes in our dataset demonstrates the importance of research such as this with broader samples of parents.
Implications for research and practice
The aim of our study was to provide a broad perspective of the experiences of autistic parents across the journey from pregnancy to raising adult children. In doing so, we have identified a wide range of strengths and challenges experienced by autistic parents—and raised a number of questions for future research. For example, to what extent do these strengths and challenges exist for parents at different parenting stages, in different cultures, and in different social structures? What are the experiences of autistic fathers, gender-diverse parents, parents of color, and parents with other intersectionalities? How is the parenting experience different for those diagnosed after their children were born (the majority of our sample) compared with those who have always know they were autistic?
Our study identified numerous challenges experienced by autistic parents that are external to the parent–child relationship, which result from the social and structural environment in which parenting exists. Important areas for future research, policy, and service delivery include parent interactions and experiences with broader service structures.
Footnotes
Acknowledgments
The authors thank Dr Chloe Gordon, Jennifer Lowe, and Hanna Stephenson for assistance with conducting the interviews; and Marion Rabuka and Inga Koops for peer-reading and providing feedback on the article before submission.
Authorship Confirmation Statement
S.T.-J.: Conceptualization, methodology, data curation, formal analysis, writing—original draft, and writing—review and editing. C.B.: Methodology, formal analysis, validation, and writing—review and editing. S.A.: Methodology, formal analysis, validation, and writing—review and editing. This article has been given solely to this journal and is not published, in press, or submitted elsewhere.
Author Disclosure Statement
No conflicts of interest to declare.
Funding Information
The first author is the recipient of an Australian Government Research Training Program Scholarship. The project received no other funding.
References
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