Autism is a neurodevelopmental condition that is diagnosed in approximately 2% of children in Canada and the United States. Autistic children exhibit in early childhood deficits in the areas of communication and social interactions, as well as patterns of behaviors including rigidities, sensory peculiarities, stereotypical behaviors, and/or strong and sometimes unusual interests (American Psychiatric Association,
2022). These children include four times more boys than girls and display varied clinical profiles. Furthermore, the majority of autistic children have one or more co-occurring difficulties (e.g., attention deficit, anxiety, learning disabilities, epilepsy, etc.) (Maenner et al.,
2021; Public Health Agency of Canada,
2021).
Being the parent of a young child leads to several personal, professional, marital, and social changes that can be both challenging (Saxbe et al.,
2018) and rewarding (Nelson et al.,
2014; Nomaguchi & Milkie,
2020), which might be especially true for mothers of autistic children. Indeed, mothers of autistic children often face changes in their perspective toward life, daily routines, career paths, and relationships with their spouse, family members, and friends (Corcoran et al.,
2015; Dieleman et al.,
2018; Ooi et al.,
2016). On the one hand, mothers of autistic children can develop a new vision in life, experience self-growth, and empowerment, and become more in the moment (De Clercq et al.,
2022; Dieleman et al.,
2018) and appreciative of the little things (Corcoran et al.,
2015; Ooi et al.,
2016; Smith & Elder,
2010). On the other hand, they also often encounter additional challenges in exercising their parental role, in part due to their child’s characteristics. Indeed, they report having to fulfill not only the role of the mother, but also that of therapist (e.g., implementing therapeutic exercises and interventions at home) and advocate (e.g., educating others on autism, finding services, and pursuing a non-evident search for a diagnosis), which generates a colossal workload (des Rivières-Pigeon & Courcy,
2014; Safe et al.,
2012). This workload is an integral part of basic parental responsibilities involving many cognitive (e.g., thinking about difficulties that could arise at the park or daycare and planning how to prevent them), domestic (e.g., cooking meals and cleaning), educational (e.g., teaching social and communicational skills), and care tasks (e.g., giving the bath, putting the child to bed and soothing the child), on a daily and continuous basis. Nevertheless, this workload is often complex and invisible to others (des Rivières-Pigeon & Courcy,
2017; Dieleman et al.,
2018). Furthermore, mothers are particularly exposed to the challenges of parenthood and those associated with autism, since they assume a higher proportion of care for the child and domestic work than their spouse (Davy et al.,
2022; McAuliffe et al.,
2019). They also tend to live in a context of constant uncertainty as the development of young autistic children and their social integration are difficult to predict. In addition, parents of an autistic child describe experiencing a lot of isolation and stigma from members of the community who do not fully understand their reality (Dieleman et al.,
2018; Nicholas et al.,
2016; Woodgate et al.,
2008). Mothers of autistic children therefore seem to face significant challenges adapting to their life context.
The Concept of Adaptation
The concept of adaptation refers to the idea that when faced with stressors, the individual tries to maintain a balance between the satisfaction of personal needs and taking into account the demands of the environment to which the individual must respond. The individual then sets up regulatory processes, such as the use of resources and coping strategies (Tarquinio & Spitz,
2012) that act as facilitators in “preserving, improving and adjusting” (Ordre des psychoéducateurs et psychoéducatrices du Québec,
2014, p. 12, as translated by Périard-Larivée, 2023) his/her level of functioning (outcomes). For example, when a woman becomes the mother of an autistic child, she is faced with the challenge of trying to balance her own needs, such as sleep and maintaining significant relationships, with several daily stressors, such as managing the child’s difficulties and complex needs, advocating for services and facing stigma. Facilitators, such as resources (e.g., social support and services) and coping strategies (e.g., “letting go” and reframing the vision of the situation), may then help the mother adjust to the situation (Corcoran et al.,
2015; Dieleman et al.,
2018). Several qualitative and quantitative studies have documented outcomes for mothers of autistic children that result from the process of adapting to the challenges they face. For instance, mothers of autistic children report higher levels of parental stress, psychological distress (Estes et al.,
2013; Hayes & Watson,
2013; Miranda et al.,
2019) and burnout than mothers in the general population (Kütük et al.,
2021). According to a scoping review by Davy and her colleagues (
2022), they also have lower participation in the labor market and take less part in leisure or social activities than mothers of neurotypical children, due to changes made to accommodate their parental responsibilities. They may also experience strain in their relationship with their spouse (Corcoran et al.,
2015; Ooi et al.,
2016). Thus, the adaptation process of mothers of autistic children spans several life domains, namely psychological (e.g., their psychological well-being), social (e.g., relationships with friends and extended family), professional (e.g., participation in the labor market and occupation), marital (e.g., spouses’ relationship) and parental (e.g., family life and parental role).
Furthermore, according to Dalle Mese and Tarquinio (
2012), the concept of adaptation, which refers both to a state and a process, should be studied using a global and integrative approach rather than narrower concepts. Therefore, studies should look not only at stressors, coping strategies, resources, and outcomes of adaptation of mothers of autistic children, but also at how the combination of all these factors informs the maternal adaptation process. The most widely used model of parental adaptation in autism, which tends towards such a global approach, is the
double ABCX Model of Family Stress and Adaptation (McCubbin & Patterson,
1983). This multivariate model suggest that families’ process of adaptation can be described by the interrelations of several factors that play a role in the short and long term : the initials stressors faced by the family (A), the additional demands that accumulate over time (aA), the family’s existing (B) and expanded internal and external resources (bB), the perception of stressors (C) and the reappraisal of the situation (cC), the coping strategies used (BC) as well as the outcomes of individual and family adaptation (xX) (McCubbin & Patterson,
1983). The child’s diagnosis and his/her difficulties are generally identified as the initials stressors (A) and the pileup of demands and stressors (aA) faced by mothers are often only documented with a global score, without specifying their individual contribution (Manning et al.,
2011; McStay et al.,
2014; Meleady et al.,
2020; Pakenham et al.,
2005; Paynter et al.,
2013), or are not documented (Pozo et al.,
2014; Weiss et al.,
2015). These studies also tend to look at the family’s resource through the lens of social (Meleady et al.,
2020; Pakenham et al.,
2005; Pozo et al.,
2014) and formal support (e.g., professional and school services, Manning et al.,
2011; Meleady et al.,
2020). Thus, this model mainly focuses on the context of autism rather than on the overall experience of mothers’ adaptation in their various spheres of life. Furthermore, little attention is also paid in this model to the mothers’ perspective of their adaptation process as a whole.
Although this model identifies contributing elements to the adaptation of mothers of autistic children and illustrates the complexity of this process (McCubbin & Patterson,
1983), there is still an important gap in knowledge about the overall adaptation process of mothers of autistic children and how they perceive it. In fact, the broader context of motherhood is often overlooked in favor of a single focus on mothers’ experience of autism. Additionally, while many quantitative studies on the adaptation process of mothers of autistic children are available (Manning et al.,
2011; McStay et al.,
2014; Meleady et al.,
2020; Pakenham et al.,
2005; Paynter et al.,
2013; Pozo et al.,
2014; Weiss et al.,
2015), few qualitative studies have documented their perception of this process using a theoretical adaptation framework (Lutz et al.,
2012). Yet, it is essential to consider the overall experience and perception of mothers of autistic children to fully understand the depth of their reality and to provide services that are genuinely suitable (des Rivières-Pigeon & Courcy,
2014; McCauley et al.,
2019). Moreover, during the recent COVID-19 pandemic, mothers of autistic children faced several changes that increased their stressors and limited their access to resources (e.g., loss of childcare and specialized services, reduced access to support networks, increased child behavior problems, changes in routine, remote working, etc.). While these changes were associated with negatives impacts for some mothers of autistic children (Asbury et al.,
2021; Lee et al.,
2021; Tokatly Latzer et al.,
2021), they were associated with both positive and negative outcomes for others (Asbury et al.,
2021; Tokatly Latzer et al.
2021). Tokatly Latzer and colleagues (2021) suggest in their qualitative study that parents of autistic children’s appraisal of their situation during the COVID-19 lockdown closely influenced their outcome during this period. As such, it is crucial to document mothers of autistic children’s perception of their adaptation to better understand how their maternal adaptation process unfolds.
Therefore, this study aims to document the perception of mothers of young autistic children of their overall process of maternal adaptation. By doing so, the study will extend previous research by providing a broader and deeper perspective on what is already known about maternal adaptation in the context of autism. Thus, the present study aims to answer the following questions: (1) From the point of view of mothers of young autistic children, how do stressors and facilitators (resources, coping strategies and facilitating contexts) present in their environment influence their adaptation across the psychological, social, professional, marital, and parental life domains? (2) How do mothers of young autistic children perceive the outcomes of their process of maternal adaptation? The study uses a qualitative research design and an interpretative descriptive approach, which aims to describe and understand a phenomenon linked to the human experience, its components as well as their interrelations while considering the experiences and perception of the individuals involved (Gallagher & Marceau,
2020).
Results
The analyses revealed the complexity of the adaptation process experienced by mothers of a young autistic child. Indeed, mothers of autistic children identify many stressors, coping strategies, resources, facilitating contexts, and outcomes of this process in the psychological, social, professional, marital, and parental life domains. These stressors, facilitators, and outcomes, described by participants as overlapping and sharing intricate links, are presented in the next paragraphs following a chronological structure from the past to the present day
Becoming a mother: “Taming” the gap between expectations, reference models and reality
For many first-time mothers among the participants, becoming a parent (stressor, parental domain) turned out to be a major challenge, and for some, regardless of the neurodevelopmental condition of the child: “So, I would say that it was worse for me to just adapt to his arrival [as] a baby than to adapt to the fact that he functions differently” (Alex’s mother, boy, moderate autistic traits). Mothers explained this in part by the intensity of this period full of changes, novelty, and unknowns. Although they described varied experiences of motherhood, many agreed that there was a significant gap between their actual experience and their expectations on how it would be. Indeed, being a mother turned out to be much more difficult than they had thought. One stay-at-home mother of two autistic children explained: “That’s not how I saw […] motherhood. I love my children, I spend beautiful moments with them, but uh, it’s very demanding” (Jane’s mother, girl, moderate autistic traits).
However, many mothers also perceived that their child’s differences brought about additional challenges for their motherhood. For example, some reported that these characteristics had widened the
gap between their reality and the normative reference models (stressor, parental domain) leading to feelings of invalidation and insecurity. One separated mother explained:
[As a baby, when Arlo slept,] he always put a blanket in his face, y’know for a new mother with the “Tiny Tot to Toddler”, y’know, that book [given by the hospital at the birth of the child], there must be nothing in his face. Well, if you took the blanket away from him, he would start screaming, y’know […]. (Arlo’s mother, boy, moderate autistic traits)
For some, the difficulty arose from the fact that it took them several years to recognize their child’s differences (stressor, parental domain) and, consequently, to understand the challenges they faced. This proved challenging, as they tended to blame their parenting skills. One single mother explained: “Before knowing […] that Anna was autistic, I would say to myself: come on, I am such a bad mother […]” (Anna’s mother, girl, moderate autistic traits). Some shared that they believe their adaptation would have been easier if they had recognized their child’s differences earlier (facilitator, parental domain). One single mother explained: “[…] if I had known when he was 9-10 months, a year old, y’know, maybe that would have made things a lot easier […]” (Liam’s mother, boy, minimal autistic traits). Mothers who identified these differences early reported that they were able to swiftly free themselves from the pressure of developmental norms, employ appropriate interventions, and, above all, undergo a single, smoother transition to motherhood, facilitating their adaptation. One separated mother explained: “I didn’t have time to adapt to my life as a mother before the diagnosis, that’s why, maybe, I’m less disturbed. […] I didn’t have time to be the mother of a child, and then realize he was autistic.” (Arlo’s mother, boy, moderate autistic traits). These women, however, often had difficulty getting others to recognize their child’s differences, including their spouse, which created conflicts and forced them to bear a large part of the evaluation process.
Diagnosis and Services: Stressors and Facilitators of Adaptation
In this regard, most mothers described the period of
child evaluation (stressor, parental domain) as being very
stressful (outcome, parental domain) and demanding because of the steps to be taken to obtain an evaluation, the numerous appointments, the emphasis placed on the difficulties of the child, and the uncertainty surrounding this long process. One stay-at-home mother explained:
[…] it was difficult to ask for services, to fight for services. Finally, having to go to the private sector. Then […] well going through a process of questions, of stress also of: ‘What are they going to tell me? Am I putting out all this money to be told: Well, there’s nothing wrong with him?’ (Thomas’ mother, boy, moderate autistic traits)
Obtaining the diagnosis (Stressor and facilitator parental domain) was met with ambivalence by most mothers. Indeed, many expressed experiencing shock,
sadness (outcomes, parental domain), and worries about their child’s future. However, these women also reported regaining their self-confidence and feeling relieved at the prospect of receiving support and of being able to better understand their child and the challenges they faced (
feeling competent, outcome, parental domain):
[Before it was] as if we were climbing blindly […], to have arrived at the diagnosis [of Leo and his father] it means that now we see a little better, y’know, we look at the wall to climb, and we see the grips a little better, and we can better analyze and then plan our way. […] it’s more peaceful, now I would say. (Leo’s mother, boy, moderate autistic traits)
Establishing
services (Stressor and facilitator parental domain) for the child was then a period that called upon the mothers’ adaptation skills just as much. They explained that access to services was difficult (e.g., long waiting lists and hard-to-find services) and that they had met practitioners with little knowledge of autism or who made harsh judgments about them. Many reported they had to “fight” (Carl’s mother, boy, moderate autistic traits) or go to the private sector to obtain quality services. Because of the large investment of time, energy, and money required, mothers sometimes felt limited in their ability to offer their child all the services she/he needed, which generated feelings of
guilt and helplessness (outcome, parental domain). These services also imposed a heavy workload (e.g., communicating with professionals and implementing recommendations) that fell largely on the shoulders of already exhausted and overburdened mothers:
[…] I realized with the lockdown […] the weight of the appointments […] I didn’t want to see it because I would say to myself: ‘Well these appointments, they’re helping him.’ But since we no longer have appointments, I can see that it has really relieved our stress, our family organization. (Luca’s mother, boy, minimal autistic traits)
In short, on the one hand, mothers perceived services as being a facilitator of their adaptation, since they promote the development of their child and help them to feel supported and better equipped. On the other hand, the vast majority of mothers described services as a major source of stress that fueled their parenting stress, fatigue and feelings of disappointment, guilt, helplessness,
frustration (outcome, parental domain), and
incompetence (outcome, parental domain).
We went to see the occupational therapist, then saw her again two weeks later and: ‘Have you practiced this exercise?’ ‘We put the list on our fridge, but we didn’t do anything ‘. In addition to feeling overwhelmed, well, we feel inadequate because we should have done better, we should have done more. (Luca’s mother, boy, minimal autistic traits)
On a daily basis, stressors accumulate and impact various life domains
Parental responsibilities
Regarding daily life, the child’s difficulties (stressor, parental domains) occupied a prominent place in the current lives of mothers and represented a major stressor. Indeed, all the autistic children in the study faced adaptive challenges throughout their development, including internalized, externalized, or developmental problems. Many also experienced frequent meltdowns and issues on the following levels: social, sensory, communication, sleep, learning, eating, and/or integration in daycare or school, which could be aggravated during periods of transition.
For all the participants, the child’s difficulties caused constant worry and a colossal workload (stressor, parental domain). In fact, the caregiving and educational tasks became more complex since energy-consuming, invasive, and stressful reflective work was required to understand the child’s needs, plan interventions, and identify the contexts that likely contributed to the occurrence of difficulties. Some mothers mentioned having to maintain a state of hypervigilance at all times in order to ensure the physical safety of their child or to prevent problems. Many also reported living in constant anticipation of potential difficulties arising: “Every day […] the school would call me: ‘Thomas is in meltdown. You have to come.’ […] The night goes on, and you have trouble sleeping because you know that the next day it will be the same thing.” (Thomas’ mother, boy, moderate autistic traits). Moreover, some mothers explained that their child’s difficulties increased some pre-existing difficulties related to personal conditions (e.g., autism or anxiety) or traits (e.g., perfectionism; stressor, psychological domain), which in turn could make them more reactive to their child’s behaviors: “[my children] are quite something on a noise level. And I have issues on a sensory level, and I find it difficult to handle shouting and sudden noise, so my main challenge is managing my sensory overload.” (Loic and Charles’ mother, boys, moderate autistic traits, and NA).
To prevent and manage their child’s difficulties as well as support his development, mothers mentioned implementing a variety of intervention strategies. However, many reported experiencing little success with them. They added that the interventions that worked often went against the usual standards or required rigor and great self -control on their part. For these reasons, mothers could not succeed in constantly applying these interventions and sometimes had the impression that they could not play their maternal role as they would have liked. One stay-at- home mother of two autistic children explained: “[…] I sometimes have the impression that I have to be more of a therapist than a mother, y’know. […] this is not the role I wanted.” (Jane’s mother, girl, moderate autistic traits). In addition, certain interventions, such as the use of physical force, were described as demanding, presenting risks and serious issues: “[…] it goes against our values too. Y’know I, I would not be surprised one day, to be reported to Child Protection Services. Because sometimes I have to restrain her […]” (Zoey’s mother, girl, moderate autistic traits). Intervening with the child is therefore demanding, stressful, and not very rewarding for mothers.
For many mothers, in addition to these challenges, there was significant pressure (stressor, parental domain) to be the one ensuring the proper development of the child. This pressure stemmed from their personal expectations, those of professionals, and the message they conveyed regarding the importance of early intervention. Mothers reported that it was difficult, if not impossible, to meet these expectations. One mother receiving public services for her son and working part time stated: “It’s the constant impression of having to do more, and not being able to deliver. Y’know, the energy. The time. Or just the motivation.” (Luca’s mother, boy, minimal autistic traits). Many added that due to the unique behaviors or needs of the child, it was nearly impossible for someone else to occasionally take over.
Thus, the majority of mothers reported that their parental responsibilities with the autistic child and the challenges encountered had the effect of reducing their feeling of competence and generating a high level of parental stress and fatigue. They reported that these challenges made them experience feelings of guilt, frustration, helplessness, and failure. Their parental responsibilities thus took up all the space in their lives, leaving them very little to invest in other life domains. In this sense, we have observed in the context of the interviews that many mothers tended to talk more about the adaptation of their child or the way in which they learned to meet their child’s needs rather than about their own adaptation process. One single mother made the observation several times: “Ah, I’m still talking about Liam, I no longer talk about myself” (Liam’s mother, boy, minimal autistic traits). Similarly, many mothers pointed out that they lack the time to use the support services offered to them (e.g., therapy and parents’ groups; facilitator, psychological domain), despite recognizing their benefits.
Concerns About the Future
The parental stress of most mothers was exacerbated by the uncertainty surrounding the future (stressor, parental domain) of their child, which served as a major source of daily worries: “Is he going to be violent later? Are we going to be able to handle him all the time? […] And we’re going to grow old too. […] What will happen if we die?” (Max’s mother, boy, severe autistic traits). The daily anguish stemming from these worries prompted some mothers of children presenting severe traits of autism to plan for their child’s future (e.g., investing money, planning to retire early, or raising awareness; facilitator, parental domain), which was reassuring, yet demanding.
The Quality of the Relationship with the Child
Furthermore, some participants added that their child’s communication difficulties or their lack of demonstrations of affection towards them could also prevent them from interacting with their child as they would have liked (stressor, parental domain), which was a source of disappointment and sadness: “I would like to be able to talk to him, for him to tell me about his day […] If only how he feels. […] I find it super hard.” (Carl’s mother, boy, moderate autistic traits). Conversely, many mothers underlined that exchange of affection with their child and their good relationship (facilitator, parental domain) with him/her were important facilitators since this brought them happiness, soothed them, and gave them strength.
Juggling with the Child, Work and Family Demands
In addition to caring for the autistic child, most mothers underlined that having to take care of other members of their family, to assume a major part of the domestic and family organization tasks, and to maintain their performance at work represented major stressors in their daily lives. They described balancing these different responsibilities as difficult (work-family balance, stressor, professional domain) and having a significant impact on their work commitments (outcome, professional domain). One mother working full time and whose partner is a stay-at-home dad explained: “I have trouble getting through my job, that’s another stress.” (Max’s mother, boy, severe autistic traits). Some chose or were forced to make changes to facilitate this balance (Stressor and facilitator professional domain). Nevertheless, they explained that these changes could also: (1) be a source of stress: “[…] it is an economic stress. […]” (Max’s mother, boy, severe autistic traits); (2) represent certain sacrifices: “[…] I could perhaps have advanced in my career, and then it was like put on ‘hold’ for a few years.” (Zack’s mother, boy, moderate autistic traits, blended family); or (3) create an imbalance in the division of tasks in the couple: “[…] it falls on my shoulders for the medical or psychological side, and so forth. […] I am a stay-at-home mom, so it’s obvious that it’s much more my job. So, often it’s a lot.” (Thomas’ mother, boy, moderate autistic traits). Nevertheless, some mothers underlined that what they had learned in their role as a mother allowed professional development (outcome, professional domain). A single mother explained: “Because all the expertise that I acquire with my son […] I find that as a social practitioner it gives me that experience.” (Liam’s mother, boy, minimal autistic traits).
Marital Life: The Importance of Support and the Impacts on the Couple
Many mothers explained that the support of their current spouse or the father of the autistic child (facilitator, marital domain) was an important facilitator. In fact, many explained that maintaining good communication made it possible to defuse conflicts, while the sense of being part of a team allowed them to feel supported and to take a breather when they needed it: “[…] [the children’s father] is very, very present and it’s helpful both as a parent and as a mother to have support too.” (Zoey’s mother, girl, moderate autistic traits). Moreover, some mothers reported having succeeded in maintaining a stable couple (outcome, marital domain) despite the challenges encountered, and that sometimes even, these had allowed them to strengthen their bond (outcome, marital domain). One autistic mother whose partner is also autistic explained: “It made us bond, it really united us […] the ordeals […]” (Loic and Charles’ mother, boys, moderate autistic traits and NA). However, this reality was not shared by the majority and many said they had the impression of taking on alone a large part of the domestic and educational tasks, which could contribute to their weariness. In fact, most women reported that the arrival of the autistic child, through the associated stressors, had negative impacts on their marital life (outcome, marital domain). Many said they experienced more conflicts because of the differences in their vision (stressor, marital domain) of autism and felt they had little availability for their spouse because of their lack of personal space (outcome, psychological domain): “Everything, everything, everything revolves around the children’s needs, so that we get no time alone or together. So, it really has a negative impact. […] it’s a crisis situation right now.” (Juliet’s mother, girl, severe autistic traits).
Social Life: Stressors and Outcomes
On the social level, many mothers said they encountered social barriers (stressor, social domain) that led them to feel isolated and have a less satisfying social life (outcome, social domain) than in the past. For example, many shared that they lost friends and that it was now more difficult for them to participate in social events due to the autistic child’s behaviors, lack of understanding of others (stressor, social domain), and fatigue: “[…] it’s complicated to go out with the two children. We’re already exhausted. It’s as if social outings have become like a burden.” (Luca’s mother, boy, minimal autistic traits). Conversely, some mothers underlined that social support (facilitator, social domain) and interacting with others living similar situations helped to break their isolation and facilitate their adaptation. Many mentioned that the efforts invested in adapting moments spent with others (e.g., spending less time at events) and maintaining their friendships (facilitator, social domain) had enabled them to maintain a satisfying social life (outcome, social domain) despite the challenges faced. The same applied to the openness and kindness of their friends and family and the accessibility to respite opportunities (facilitator, parental domain). One single mother explained: “[…] my mother also looked after my son a lot, so my mother allowed me a lot to […] be able to continue to have a social life.” (Liam’s mother, boy, minimal autistic traits). Moreover, the involvement of grandparents with the child, for appointments, financial support or domestic assistance, represented an important facilitator for mothers’ adaptation.
The Relationship with Society: A Major Stressor
In addition, many mothers expressed concerns about how their peers perceived their child and their parenting skills, and they also shared the distress caused by the judgments (stressor, social domain) they felt directed towards them. Several mothers of children with minimal to moderate autism traits shared having already received derogatory comments or invalidating advice from relatives and strangers: “Y’know, there was once a lady who said to me: My God, they’re not able to raise their child.” (Carl’s mother, boy, moderate autistic traits). Some participants mentioned that the population’s lack of knowledge about autism and their reality seemed to exacerbate the judgments mothers faced, leading them to feel misunderstood: “It’s a reality that’s difficult to grasp for people who don’t live it. And I, I suffered a lot from that. Because people thought we were exaggerating and that we were too stressed.” (Loic and Charles’ mother, boys, moderate autistic traits and NA).
In short, the analyses showed that that not all mothers had support from their spouse, family, and friends; many had support from only one of these sources. It is also important to underline that almost all the reported stressors were found, to varying degrees, in the narratives of each of the participants, indicating that they faced an significant accumulation of stressors daily in all life domains. Faced with this accumulation, mothers explained that they used various adaptation strategies in an attempt to maintain a certain balance in life.
Adaptation Strategies Used by Mothers
To avoid certain disappointments, to alleviate the pressure on their shoulders, and to enhance self-protection, many mothers explained that they worked on
reducing their expectations, respecting their personal limits, and letting go of certain responsibilities (facilitator, parental domain). However, they pointed out that they might feel guilty for doing so:
[…] sometimes, I don’t find myself to be the perfect mom because I don’t do [all the exercises] but […] I’m a single mom, I say to myself: Look, let’s calm down, we do what we can, we only have 24 h. (Liam’s mother, boy, minimal autistic traits)
In addition, many mothers used reframing strategies (facilitator, parental domain), aimed at qualifying their experience or changing their perception of stressors. For example, they reported using humor, focusing on the positive, looking at the facts or comparing themselves to peers: “[…] I have a friend who has a severely disabled child. And, y’know, there’s no attachment bond, the child is no longer progressing […] I say to myself: I still have more […]” (Rose’s mother, girl, severe autistic traits).
Similarly, many mothers indicated redirecting their attention to the present (facilitator, parental domain), the progress of the child, and the little moments of daily happiness in order to avoid dwelling on the future. They mentioned that the progress of the child and the shared quality moments were sources of happiness and pride (outcome, parental domain), reassuring them about the future and their parenting skills, and giving meaning to their efforts: “[…] having little moments of happiness that are always accessible: like reading a book close together […] It’s a way for me to re-energize.” (Thomas’ mother, boy, moderate autistic traits).
Finally, most mothers explained that to preserve their balance and their ability to take care of their family, it was essential to take time for themselves (facilitator, psychological domain) to meet their needs, ranging from basic necessities to personal fulfillment. They did so by going to bed earlier, exercising, pursuing meaningful personal projects (e.g., going to school or having a business), or taking time to eat. Many mothers, however, mentioned that they had difficulty taking this time for themselves as they had to attend to several other responsibilities. One autistic mother whose partner is also autistic explained: “[…] it’s not easy to do because it also brings its share of guilt. But it’s necessary for the family to remain steadfast.” (Loic and Charles’ mother, boys, moderate autistic traits and NA).
In summary, it was observed that mothers had access to different numbers and types of facilitators (i.e., adaptation strategies and resources). In fact, mothers viewed several of the resources that favored their adaptation as not very accessible, and found several adaptation strategies to be difficult to set up.
Various Outcomes of the Adaptation Process
The adaptation process of these women, marked by multiple stressors and hard-to-access facilitators, gave rise to a variety of outcomes, as presented in the previous pages for the social, professional, marital, and parental life domains (see Table
2 for a summary).
Table 2
Summary of Identified Stressors, Facilitators, and Outcomes of the Adaptation Process
Psychological | Pre-existing difficulties related to personal conditions or characteristics | Taking time for self Services for the mother | Mental health difficulties Physical and mental fatigue Lack of personal space | Personal growth Happiness |
Social | Barriers to social participation Judgment and lack of understanding | Efforts to maintain relationships Social support | Social isolation | Satisfactory social life |
Professional | Work-family balance Career and life-style changes | Career and life-style changes | Career slowdown or difficulties at work | Professional development |
Marital | Differences of opinion | Support from the partner | Negative impacts | Stability/Stronger bond |
Parental | Becoming a mother Gap with reference models and expectations Mental and work loads and pressure Child’s difficulties Uncertainty surrounding the future Evaluation, diagnosis and services Challenges within mother-child interactions Delay in recognizing child’s differences | Respite Letting go and reducing one’s expectations Using reframing strategies Redirecting attention to present Planning the future Diagnosis and services Mother-child shared affection Recognizing child’s differences early | Feeling incompetent Parental stress Negative emotions | Feeling competent Pride |
Mothers’ perceptions of their adaptation can be placed on a continuum ranging from severe difficulties of adaptation to positive adaptation, where each mother evolved at her own pace and differently from one domain to another. Nevertheless, it was observed that all the mothers reported experiencing distress or adaptation difficulties in one or more life domains at the time of the interview. On a psychological level, almost all mothers reported experiencing daily a high level of
physical and mental fatigue (outcome, psychological domain). In addition, more than half of the participants had experienced at least one episode during which they faced
mental health difficulties (e.g., depression, anxiety, adaptation disorder, burnout or postpartum depression; outcome, psychological domain) impacting their functioning, necessitating a sick leave and/or medication. One full time working mother explained:
[…] I had to get medical help, uh, because, uh, I was, I had become very, very irritable, I had become overwhelmed with everything. […] I was a good 50% less functional. […] I had become too anxious whereas y’know, uh, that’s not me, I’m not anxious in life. (Rose’s mother, girl, severe autistic traits)
Nevertheless, many participants also underlined that their experience of motherhood led them to develop on a personal level (outcome, psychological domain). A separated mother explained: “And it may have made me evolve as a human being. […] I would say that I learn to know myself better, respect myself better, better define my limits to myself.” (Arlo’s mother, boy, moderate autistic traits). They added that motherhood brought them happiness, despite the challenges encountered. One single mother explained: “I am happier now in my life than I was when I had, at other times, when I had all my freedom […]” (Liam’s mother, boy, minimal autistic traits).
Regarding the overall perception of their adaptation, the collected narratives of the mothers were nuanced and varied. On the one hand, nearly half of the mothers described having a difficult adaptation, that is, struggling to meet their daily needs and “[…] trying to survive […]” (Max’s mother, boy, severe autistic traits). However, many explained that the passage of time and the efforts invested in learning to set their limits and take care of themselves had recently started to help them to regain the upper hand over the stressors: “[…] I’m currently adapting, but on the right track […] before, everything used to come before me […] I’m not saying that my balance is perfect, I’m learning” (Hugo’s mother, boy, minimal autistic traits). On the other hand, the second half of the mothers rather described their adaptation as quite good the extent of the challenges encountered. They explained, among other things, having managed to find a certain balance between their personal well-being and answering the child’s needs. Nevertheless, they emphasized that their adaptation remained variable with new challenges encountered:
But no, I think my well-being is still good. But y’know it’s sure that it’s normal life, we live under stress, we live some more fragile periods, huh, because sometimes behaviors relapse and all that, but roughly speaking I think we succeed in having a good balance. (Noah’s mother, boy, minimal autistic traits)
Finally, it is relevant to underline that the narratives of several mothers suggest that there was a close relationship between their personal adaptation and that of their child. Indeed, many shared that their condition directly affected their child’s adaptation and vice versa: “Well, it’s sure that […] I’m fine when he’s fine and doing well” (Luca’s mother, boy, minimal autistic traits); “You know when I’m fine, when I’m rested, everyone is more available” (Juliet’s mother, girl, severe autistic traits).
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