First Do No Harm? Reflections on the “Autistics as Parents” Literature

When I was a young mother in the 1990s, I didn’t know I was autistic. I knew that the information in the books I read about parenting didn’t sound like what I was experiencing and that the advice I got from the “experts” wasn’t very helpful. I was convinced that parenting—like so many other things in life—was something that came naturally to everyone else, and only I struggled with. At the same time, my children were a source of great joy, and our mutual love was immense. After my children were diagnosed as autistic, I began to understand myself, finally receiving my own diagnosis well into their teen years.

As my children grew into adults, it became even more important to me to understand how “autistic parenting” is different from “neurotypical parenting.” I didn’t want the next generation of autistic parents to question and devalue themselves the way that I and my peers had done. I wanted to understand where (and why) we struggle, where we excel, and what supports we need. Last year I set out to undertake a systematic review of the literature on autistic people’s experiences of parenting. As a researcher, I expected to learn a lot. As an autistic parent myself, I did not expect to find the experience emotionally challenging.

The first thing that struck me when I started searching the academic databases was just how many articles are about rats! My search feeds were loaded with titles like “Do Autistic and Depressed Rats Express the Same Type of Maternal Care?” ¹ I have to admit that I went down a bit of a rabbit hole for a while there, wondering exactly how they know the rats are autistic. The answer is complex and disturbing, and I won’t go into it here—partly because the exact “science” is outside of my area of expertise and partly because the details of the genetic manipulation and the replication of “environmental factors” said to be associated with autism in humans made my heart hurt for the rats and my brain consider the potential implications for autistic people of this avenue of science.

The next thing I discovered was just how many articles are published with “autistic parent” (or more likely “autistic mother”) in either the title or the keywords that are not actually about autistic parents; they are about non-autistic parents of autistic children. Other articles use the equally questionable “autism parent”^2,3 a term favored by social media bloggers. Aside from the pragmatics of identifying relevant articles, it felt to me like the subtext was that the words autism and parent only go together in the context of other people parenting us. As parents ourselves, we are invisible, assumed not to exist, and not requiring our own identity.

Then I started reading the abstracts of the remaining relevant articles to identify the ones that met the inclusion criteria: “reported data on the perspectives and/or experiences of autistic people at any stage of the parenting journey.” ⁴ I thought that this part would be easy. I imagined that I would curl up in my comfy armchair for a few days and enjoy reading what the academic literature had to say about people like me. I was wrong.

I found myself reading articles that were consistently framed with a deficit focus, which won’t be new to anyone who has done any reading in this space. The literature is replete with delightful titles such as “Maternal Autistic Traits and Adverse Birth Outcomes” ⁵ and “Caregiver Burden and Relationship Satisfaction in ASD-NT Relationships.” ⁶ The latter, I discovered, was not actually about parenting but rather based on the premise that the non-autistic partner in the romantic relationship was the “carer” of the autistic partner. I have never thought of my husband as my carer or myself as a burden, although I do remember an audience member at my book launch, congratulating me on being married as that was “quite an achievement for an autistic person.” The authors concluded that NT spouses of autistic partners had lower relationship satisfaction than autistic partners and experienced “significant caregiver burden.” However, while they report the caregiver burden scores for the NT partners, which equate to “high” levels of burden, they do not report the scores for the autistic partners. Clearly, neither the authors nor the reviewers were curious about autistic experiences of caring in the relationship.

In my own research into parenting, I consistently find that autistic people take on much of the caregiving role; although they more often use words like “joy” than “burden” so perhaps their scores would be lower anyway.^7,8 More importantly, the NT group consisted of 59 females and one male, whereas the autistic group comprised three females and nine males. The very small N in the autistic group and the disparity in gender distribution suggest that the comparison of relationship satisfaction levels between the two groups should be interpreted with great caution. The authors do note in their limitations that the level of caregiver burden “may be partly due to gender influences on ASD symptom expression, or gender influences on caregiving,” but not that it may also be due to gender roles in relationships more broadly. They also do not note the gender-specific nature of their findings in the title or the abstract.

Research questions about autistic parents are consistently framed in the negative, such as in a study of autistic mothers’ perinatal well-being and parenting where: “It was hypothesised that autistic people may experience higher anxiety, depression and stress and lower satisfaction with life across the perinatal period, as well as lower parenting confidence.” ⁹ When the negative is not conclusively proven, alternate explanations are posited. For example, in this case, there were significant differences between the groups in anxiety, depression, and stress but not in parenting confidence or other parenting measures, and the authors suggest, “The lack of group differences in parenting may be influenced by the small sample size, the self-report nature of the data or may indicate that autistic parents are able to compensate for higher mental health symptoms.” As an autistic parent and a parenting researcher, I consistently find that autistic people as a cohort make very good parents, and our “lack of confidence” comes from the stigma, discrimination, and gaslighting we experience in interacting with health, education, and other systems.

What I hadn’t expected was the surprise expressed by researchers (and published unquestioned in journals) when we don’t live down to their expectations. For example, in one study that sought to “explore satisfaction with marriage and parenting in groups of couples where one spouse has a clinically confirmed AS diagnosis” ¹⁰ —a seemingly neutral framing—the authors’ discussion of their finding that these factors did not differ between autistics and non-autistics clearly demonstrated their a priori expectations. They conclude: “In summary, these results reveal, surprisingly, that the husband’s or wife’s AS status had little impact upon any aspect of marital quality… . Equally surprisingly, for parenthood satisfaction, results showed that parental AS diagnosis (either in the self or the spouse) did not significantly diminish the satisfactions and pleasures that respondents derived from their parenting roles.” As an autistic person who is both a spouse and a parent, I found this level of bemusement at my neurotype’s ability to function in both roles deeply offensive.

In an ideal world, all autism research teams would include autistic researchers. While we are a long way from that utopia, there are some encouraging steps being taken in the field. For example, among the qualitative articles included in our SLR, none of the six published before 2020 reported that an autistic researcher was included in the team compared with 8 of the 11 (73%) of those published in 2023 and 2024. I also see more researchers actively engaging with the community, seeking input in the development of research projects and the interpretation of data. Increasingly, journals are asking researchers to include positionality statements or sections detailing their participatory approach.

However, I still came across statements like this one: “The researcher, an experienced maternal–newborn nurse, and the mother of three autistic adult children developed the interview guide. The researcher did not consult with the autistic community during the development of the guide given her personal knowledge as an autism parent. However, the researcher consulted with an experienced researcher and experienced perinatal nurse practitioner who previously researched the birth experiences of autistic women in childbirth.” ¹¹ This researcher did not feel that she needed to consult with the autistic community about a study into autistic women’s post-partum experiences because she is a non-autistic mother of autistic children (i.e., she has no experience of being autistic, and her children have no experience of being mothers). However, she did feel it was essential to consult with other perinatal nurse practitioner (the lived experience that she herself does have).

The clear message here to autistic people is that we are not the experts in our own lived experience, and that others are better informed and equipped to speak for us, not only to answer questions about us but even to determine what questions should be asked.

I also found myself reading many articles where the descriptions of the research methodology and the treatment of participants caused me to question the meaning of “ethics” in autism research. Every one of the published studies that I read had been reviewed by the institution’s ethics committee (IRB). While the WHO states that “the ethical principles of beneficence, justice and autonomy are central to ethical review,” it is important to remember that they are equally important to the conduct of the research and to the ways that findings are discussed and disseminated.

One study, which sought to explore “the issues for women with high functioning ASD during their perinatal period,” managed to recruit only one participant despite local autism organizations advertising the study to their members. ¹² Rather than accepting this lack of response as an indication that there was something problematic about the study, the researchers continued—and published an article—with the one participant. While the study had approval from the institution’s ethics committee (IRB), it is not clear whether there was further discussion about the reality of confidentiality in a study with one participant. At the very least, the participant herself (“Melanie—a pseudonym”) would know on reading the article that she was the subject. If, as is likely, she had mentioned her participation to anyone else, then they too would know that this was her story.

As well as providing a very detailed report on the participant’s experiences, including describing her interactions with and feelings about her parents, the authors expressed their own subjective views of “Melanie.” I felt intense pity for her and anger at the researchers, as I imagined her feelings on reading comments like “It is difficult to tell whether Melanie’s prior circumstances were a result of her being a difficult child, or whether she was she (sic) a quite normal child who was made difficult through the circumstances. It is possibly a blend of the two,” and “She had many negative perceptions of her experiences that may not have been reality.” This person gave up her time and generously shared her experiences in the belief that she was contributing to a study where other women would also be sharing their experiences, with the goal of improving healthcare for autistic people. I am sure she did not expect to be exposed, shamed, and vilified.

I had assumed that reading the research conducted by and with autistic people would be more uplifting and encouraging. In many ways, it was. When we are allowed to tell our own stories in our own words, autistic people speak of the strengths they bring to parenting and the joys it brings them.^13–16 However, they also speak of systemic discrimination, stigma, and marginalization. Autistic parents face a world where health, education, and other professionals presume incompetence, where disclosing an autistic identity can lead to being ignored, dismissed, and having their ability to parent questioned.^{14,15,17–19}

As an autistic parent, I was not surprised to read about this discrimination and stigma but reading the entire corpus of literature made me realize that the problem is more ingrained than I had thought. I had always assumed that the solution to our problem was for health professionals, educators, and service providers to learn more about autism. Surely if they all read the research, they would stop treating us like lesser human beings who can’t be trusted to raise our children. Now I really hope they don’t read the academic research.

I commenced this process expecting to learn what the academic literature had to tell me about the experiences of autistic people as parents. I did produce a systematic review, ⁴ and I was inspired to embark on a journey of gathering autistic parents’ voices from a strengths-based perspective, ⁷ so in that sense my goal was achieved. However, as an autistic parent, I learnt the discrimination and stigma that I and my peers experience are more entrenched than I had thought, although there are some positive signs that things are starting to shift with more research teams seeking out and including autistic voices at all stages of the research process. I also learnt that volunteering to participate in research is not as risk-free as I had always believed. It is important for autism researchers to remember that autistic people are not just research participants; we are human beings with lives that are impacted by the questions you ask and the ways in which you interpret and report the answers.

Recommendations for Researchers

I hope that one day all researchers will approach autism research from a strengths-based perspective. For now, I would settle for a neutral, objective one. Rather than framing research questions as an exploration of how we are “less” than our neurotypical peers, frame them as how we are “different” (and don’t be surprised when some of those differences are positive).

No matter how many books you read or how many classes you take, you will never have a better understanding of what it is truly like to be an autistic person than we will. Don’t substitute your clinical learning for our lived experience, and don’t claim that people who spend time with us are adequate proxies for our inner thoughts. When recruiting collaborators for your project, consider actively seeking out autistic researchers. There is a growing number of openly autistic autism researchers who can be identified via their publications and existing databases of autistic researchers. There are also many more who have not publicly disclosed due to systemic discrimination in academia, who may be empowered to do so if their critical value to meaningful autism research were acknowledged.

Think about the ethical implications of your research at each step and in every decision you make. Don’t abdicate responsibility to the ethics committee. It is essential to consider both the immediate negative impacts (could this study or publication cause harm to my participant/s?) and cumulative negative impacts (could this study or publication cause harm to the autistic community by reinforcing negative stereotypes?) If in doubt, ask some autistic people. If the answer to either question is yes, then you need to redesign your research.

Be aware that we live in an increasingly connected and curated online world where search engines, filters, and algorithms feed information to people based on their interests and experiences. Your research will be read by those who provide our education, healthcare, services, and supports, and it will influence the ways in which they perceive and treat us. What you write in your article, or present at your conference, or laugh about in your lunchroom may also make its way back to the participant(s) in your study. While it has always been important to treat study participants with respect and dignity, the impact of not doing so is now even more immediate and harmful.