We initiated this interview study with questions on how parents would weigh potential benefits and risks of early autism detection programs. Would parents indeed think that earlier is always better? However, when we analyzed parents’ responses, it turned out that, rather than clear lists of benefits and risks, we had collected stories of parents drawing on both past and current experiences, and on expectations for the future. Overall, these data represented complex, nuanced parental positions towards early detection and diagnosis. This unexpected turn of the interview data complicated answering our initial research questions in the way we presumed. Nevertheless, the findings do offer valuable empirical insights for the ethical debate on early autism care.
First of all, the expectations and experiences shared by the parents in this study reaffirmed that being a parent to a child who differs from the developmental norm is often a challenging task in many respects. In accordance to the existing qualitative literature on prediagnostic experiences (e.g. Jacobs et al.,
2020), parents discussed aspects of misunderstanding their child, feelings of guilt, frustration, lack of self-perceived parenting competency, and not being recognized as “good parents” by others. One way to summarize these challenges experienced or expected in a pre-diagnostic phase, is that they could not be the parents they wanted to be for their child. Against this backdrop, nearly all participating parents held a positive overall position towards diagnosing autism at a young age, as they expected or experienced this diagnosis would support them in their challenges.
Moreover, the value of such an autism diagnosis at a young age seemed most of all relational in nature. Following an autism diagnosis, parents described how it provoked a “click”, changing how they thought about and engaged with their child, how they perceived themselves as parents, and how they related to third parties such as extended family and other caregivers. Importantly, parents described that an official diagnosis could serve as a justification to think, feel and behave differently as a parent, compared to what they initially thought of as “normal” parenting. On the other hand, parents reported that deviating from the norm and explicitly mobilizing the diagnostic label generate new tensions as well, flowing from narrow or stereotypical views on autism held by relevant people in their child’s life.
Navigating the Ab/Normal Binary
Overall, our findings underscore parents’ complicated position of navigating between either of two spheres that are available in their societal context: the realms of “the normal” and “the abnormal”. However, both sides of this binary divide seem to come with a fairly rigid set of norms and expectations, not only in respect to the child’s development and behavior, but also regarding the conception of what it means to be a good parent. When these parents no longer feel comfortable in their role, the diagnostic label offers a way out of the expectations of “normal development” and “normal parenting”. Yet, even when the diagnosis is welcomed in this sense, parents tend not to settle down in the sphere of the abnormal either.
Some parents shared indeed how they did or intended to work through the tensions generated when mobilizing the diagnostic label of autism. This involves a careful reflection on when and to whom to disclose their child’s diagnosis to obtain certain accommodations, and when not to speak about it to avoid negative or unhelpful reactions. In accordance with McLaughlin & Goodley (
2008), we could describe such goal-oriented choosing between various discourses without being fixed to one or the other, as “strategic agency” on the part of parents. Moreover, when the time is right, some parents explicitly choose to talk openly and positively about autism at an early age within their household and with relevant others. This finding confirms Russell & Norwich’s (
2012) earlier observations of parents taking a pro-active position in a post-diagnostic phase to destigmatize or normalize autism. Lastly, some parents explained how a “new normal” came about within their family as their adapted, more autism-friendly parenting practices and choice of family activities simply became part of their routines. Be it at micro-scale, we can interpret this as parents engaging in a sort of “politics of practice” (Hart,
2014), redefining the dominant norms on development and parenting that reign outside of the family by means of everyday practices. To some extent, this kind of politics of practice was also reflected by parents struggling to find the right words and correcting themselves in the terms they used to refer to autism. By referring to autism in terms of deficits and disease, they echoed the dominant discourse in society, but by trying to reformulate they also showed motivation to resist and change this discourse into a more neutrally phrased one.
We believe the latter observation sheds a new light on the position of parents in autism and autistic communities. In our study, we have seen that parents are simultaneously
subjected to the challenges raised by a binary normal/abnormal ideology centered around neurotypicality as the norm, while they are also
subjects themselves who take an active role in undermining this divide. This contrasts the oft-cited histories of pro-cure parental advocacy groups which have been often perceived by autistic self-advocates and the neurodiversity movement as their political adversaries (Pripas-Kapit,
2020; Silberman,
2015; Sinclair,
1993; Waltz,
2013). Rather, our findings suggest that parents as well do experience a position of “otherness” and the perception of not fitting into society’s expectations (Ryan & Runswick-Cole,
2008). So, next to autistic people themselves, parents of autistic children do seem to endure certain negative effects of a neurotypical-dominated society in their struggle to be a good parent. Based on this experiential overlap, we expect that ideas and discourse of the neurodiversity movement might be valuable for parents as well.
Implications for the Ethical Debate on Early Autism Care
The goal of this study was to enrich the ethical debate on early autism detection and diagnosis with the perspectives of parents of a potentially autistic child. Based on our findings, there are at least three insights and implications for this debate.
First, the value of an autism diagnosis for parents seems to be context dependent. Rather than considering a diagnosis as an inherently good or bad thing, parents rather discussed how the diagnosis might be valuable within a given societal context and at a specific moment in their lives. Especially when parents experienced or anticipated they could not be “good parents” to their child, a diagnosis appears welcome to them. The timing at which parents reach this point does differ though. In line with our analysis, we suggest that a main determinant of this timing is whether parents and relevant others need a justification to accept the child’s developmental difference, and to engage in an adjusted pedagogical approach. As we have seen in the siblings group for example, while some parents wanted to have their child assessed as soon as possible, other parents indicated that the need to obtain an early diagnosis for their youngest child was lower compared to their older child with autism, as the norms within their family shifted over time on what counts as “normal” development and parenting.
This might imply that it could be more valuable to think in terms of a “timely” autism diagnosis, at least from parents’ perspectives, rather than thinking in terms of an early diagnosis at a fixed age as is often proposed in the context of universal or targeted screening programs. A timely diagnosis, rather than merely an early one, would do more justice to the experiences and expectations shared by parents in this study. Indeed, a diagnosis was not merely valued as the outcome of an abstract process of objectively determining individual autism characteristics of their child. Parents rather described the important relational functions of an autism diagnosis taking place in a specific context. In current clinical practice, providing such a timely diagnosis is not self-evident though. In our Flemish context for example, prioritization schemes help to speed up diagnostic assessments for autism under the age of two-and-a-half to three years, yet, waiting lists go up to two years for (pre)school-aged children and adolescents. This obviously undermines the idea of a timely diagnosis.
Also, these findings suggest that a “pre-symptomatic” detection of autism (from parents’ viewpoint) might not be welcomed by all parents. In such cases, prediagnostic experiences will differ markedly from the ones described in this study, potentially lessening the need for a diagnostic label to foster understanding, recognition, justification for altered parenting practices etc. As we discussed before, some parents wanted to know whether their child was autistic irrespective of experienced problems or needs. Other parents from the sibling group indicated that the function of a diagnosis was not the same anymore for a second or third child, as they already changed many of their parenting practices and expectations. Parents without much autism experience also indicated they wanted to be offered support at a time that they experienced issues, but than before.
Second, our analysis shows that parents of (potentially) autistic children are being negatively impacted by the conceptual ab/normal divide. On the one hand, a formal diagnosis seems necessary to justify a different parenting approach and to ask other caregivers to adapt their practices as well. On the other hand, mobilizing the diagnostic label often leads to stereotypical, narrow and negative interpretations of autism. Parents’ language use illustrated their ambivalent position, as they changed between and regularly corrected themselves, visibly struggling to use the “correct” terminology.
Moving away from this binary conceptualization towards a neurodiversity approach to autism might help tackle these experienced difficulties. Neurodiversity approaches understand autism as a one form of variation within a wide diversity of minds, functionings and ways of developing, be it a minority one, associated with strengths and vulnerabilities that are partly dependent on the accommodations society offers (Dwyer,
2022). When parents would be more familiar with neurodiversity approaches, we hypothesize that they would feel less pressured to stick to what they perceive to be the normal parenting practices. Accepting that there is a diversity of ways in which children develop could help parents to embrace as well that diverging parenting practices are needed and justified for their child, without necessarily needing an official diagnosis at that point. In post-diagnostic settings, parents might benefit from neurodiversity-discourse to discuss their child’s needs and accommodations in a more neutral way, rather than reinforcing a negative perception of autism as pathological condition by default, in need of treatment and remediation.
In a recent editorial in the journal
Autism, Brown et al. launched a call to support a neurodiversity approach from the early start of clinical autism trajectories: “
it is critical that diagnosticians, who are often one of the first to frame autism for families, consider moving away from the medical model’s deficit-based story to a more balanced, neurodiversity-framed view of autism” (Brown et al.,
2021, p. 1171). Indeed, clinical practitioners seem well placed to acquaint parents with neurodiversity-thinking. This would obviously require adequate training for these practitioners, which could be extended as well to practitioners at well-baby visits, caregivers in child day care, and teachers. All these professionals play some role (formal or informal) in noticing (and communicating) a child differs from the developmental norm and/or are involved in implementing an autism-friendly environment once a diagnosis is established.
Lastly, our findings suggest that important aspects of why parents value an autism diagnosis for a young child are related to the actions they undertake as parents themselves. Of course, we have found that a diagnosis changes the personal state of affairs for parents, such as deflecting blame and providing a better understanding of their child. Yet, we have seen as well that parents mobilize the diagnosis to change the societal state of affairs as well, via what we have referred to as politics of practice. This way, an autism diagnosis does clearly not only function as a descriptive or a prescriptive term, which sets in stone how things are or should be; an autism diagnosis seems to be a productive label too, which opens space for parents to start doing things differently and work towards autism-friendly environments. Parents are, thus, not simply subjected to the diagnosis and the professional advice which follows, but clearly also subjects themselves playing an active role in putting the diagnosis to work and turning it into something of value in their lives.
This finding might inspire researchers and practitioners to reshape the kind of support offered to parents. Now, post-diagnostic services for parents are either rather descriptive, such as psycho-educational sessions, or largely prescriptive in nature, such as parent-mediated early intervention programs. Based on our findings, it seems valuable to reflect on how such services can also gain a “productive” edge and support parents to think critically about raising an autistic child within a neurotypical society.
Strengths and Limitations
With this study we aimed to contribute empirically to the urgent debate on the ethics of early autism detection, diagnosis and intervention. In contrast to earlier qualitative studies embedded in prospective infant sibling studies, our inquiry differs in terms of methodology, positionality and goals (Achermann et al.,
2020; MacDuffie et al.,
2020). We opted for full-fledged in-depth interviews with both parents (when possible) conducted at their home, using open-ended questions rather than for a tightly structured interview administered during the study visit. Also, our aim was not to evaluate parents’ satisfaction of and suggestions for early detection research practices, but rather to engage with them in a critical reflection on early detection from their proper perspective. Lastly, the first and last author of this manuscript were only engaged in the ethical work package of the TIARA study, and not in other parts of data collection and analysis. This way, there was more space to reflect on the goals and methods of such early detection research, compared to earlier work. Despite being time-intensive, the QUAGOL methodology for data analysis proved to be apt to handle the data generated with this diverse group of parents. Due to its case-oriented approach, constant comparison within and between cases, and its data-generated codes, we managed to tap well into common threads of the fourteen interviews, while also managing to make comparisons between the subgroups (Dierckx de Casterlé et al.,
2021).
Finally, we want to point out this study’s limitations regarding the specificity and generalizability of the findings. Some of our findings, such as those described in Theme 1 are not entirely specific for
early autism detection and diagnosis and confirm findings of previous qualitative work reporting on the experiences of parents of school-aged children and adolescents on the autism spectrum (Jacobs et al.,
2020; van Esch et al.,
2018). As we mentioned before, we could interview a very interestingly situated group of people as they represent potential early adopters of targeted, early autism detection, be it in a research setting. Obviously, this group does not represent all possible parents who might be approached in a future universal autism screening program: all interviewees were white and relatively highly educated. Also, many of our participants had some relevant experience with autism, while some did not at all. By consequence, our findings do not only reflect lived experiences of parenting a child
at increased likelihood for autism, as we set out in the initial research questions. Instead, our findings also reflect some experiences in parenting an (older) autistic sibling, and parents’ expectations about what might happen in the future. Moreover, our interviewees might have had a positive baseline attitude towards detecting autism early in life, as they previously consented to take part in TIARA and agreed to be interviewed for this study as well. At the same, we have learned that this group of parents held nuanced and even critical opinions regarding the value of early autism detection as described in Theme 2 and 3.