Experiences of mothering children with autism spectrum disorderABSTRACT
Objective: to investigate the challenges faced and the strategies adopted by mothers of children with autism spectrum disorder in the experience of mothering.
Method: a descriptive study, with a qualitative approach, was supported by the Sensitive Creative Method, using the “Tree of Knowledge” dynamic. It was conducted in July 2024 in a room at the State University of Pará. Thirteen mothers of children with the disorder participated. The data were subjected to French Discourse Analysis.
Results: the process of caring for a neuroatypical child begins with maternal perception of the first signs of atypicality, triggering a lonely and painful search for explanations. The difficulties faced involve the lack of preparation of health professionals, the high cost and slowness of diagnosis, as well as feelings such as guilt, denial and despair. However, over time, mothers develop internal strategies (patience, love, faith, resilience and knowledge) and external strategies (support network, therapies, medications) that strengthen the exercise of motherhood.
Final considerations: the impacts of the disorder result in the redefinition of the mothering process. It is necessary to give visibility to the demands of these mothers, promote spaces for qualified listening and to train health professionals, essential to promote quality of life for mothers, children and the dynamics of maternal care.
Descriptors:
Mothers; Autism Spectrum Disorder; Mother-child relationship; Nursing
RESUMO
Objetivo: investigar os desafios enfrentados e as estratégias adotadas por mães de crianças com transtorno do espectro autista na vivência da maternagem.
Método: estudo descritivo, de abordagem qualitativa, sustentado pelo Método Criativo Sensível, utilizando a dinâmica “Árvore do Conhecimento”. Foi realizado em julho de 2024, em uma sala da Universidade do Estado do Pará. Participaram 13 mães de crianças com o transtorno. Os dados foram submetidos à Análise do Discurso Francesa.
Resultados: o processo de cuidar de uma criança neuroatípica inicia-se com a percepção materna dos primeiros sinais de atipia, desencadeando uma busca solitária e dolorosa por explicações. As dificuldades enfrentadas incluem o despreparo dos profissionais de saúde, o alto custo e a morosidade do diagnóstico, além de sentimentos como culpa, negação e desespero. Contudo, com o tempo, as mães desenvolvem estratégias internas (paciência, amor, fé, resiliência e conhecimento) e externas (rede de apoio, terapias e medicações) que fortalecem o exercício da maternagem.
Considerações finais: os impactos do transtorno resultam na ressignificação do processo de maternar. É necessário dar visibilidade às demandas dessas mães, promover espaços de escuta qualificada e capacitar os profissionais de saúde, medidas essenciais para favorecer a qualidade de vida das mães, das crianças e do cuidado materno.
Descritores:
Mães; Transtorno do espectro autista; Relação mãe-filho; Enfermagem
RESUMEN
Objetivo: investigar los desafíos que enfrentan y las estrategias adoptadas por las madres de niños con trastorno del espectro autista en la experiencia de la maternidad.
Método: Este estudio descriptivo, de enfoque cualitativo, se apoyó en el Método Creativo Sensible, utilizando la dinámica del “Árbol del Conocimiento”. Se llevó a cabo en julio de 2024 en un aula de la Universidad Estatal de Pará. Participaron trece madres de niños con el trastorno. Los datos se sometieron a un Análisis del Discurso en Francés.
Resultados: el proceso de cuidado de un niño neurotípico comienza con la percepción de la madre de los primeros signos de atipia, lo que desencadena una búsqueda solitaria y dolorosa de explicaciones. Las dificultades que enfrentan incluyen la falta de preparación de los profesionales de la salud, el alto costo y la lentitud del diagnóstico, además de sentimientos como culpa, negación y desesperación. Sin embargo, con el tiempo, las madres desarrollan estrategias internas (paciencia, amor, fe, resiliencia, conocimiento) y externas (red de apoyo, terapias, medicamentos) que fortalecen el ejercicio de la maternidad.
Consideraciones finales: Los impactos del trastorno resultan en la redefinición del proceso de maternidad. Es necesario visibilizar las demandas de las madres, promover espacios de escucha cualificada y formación de profesionales de la salud, que son esenciales para promover la calidad de vida de las madres, los niños y las dinámicas del cuidado materno.
Descriptores:
Madres; Trastorno del espectro autista; Relación madre-hijo; Enfermería
INTRODUCTION
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by persistent deficits in social communication and social interaction, accompanied by restricted and repetitive patterns of behavior, interests, or activities. These signs emerge early and may become more evident as social demands increase1.
Based on data released by the Brazilian Institute of Geography and Statistics (Instituto Brasileiro de Geografia e Estatística - IBGE)2, Brazil has approximately 2.4 million people with ASD, representing 1.2% of the population. These figures indicate a consistent increase in the prevalence of ASD in recent decades, which may reflect both the expansion of diagnostic criteria and the improvement of detection instruments, as well as increased social awareness of the disorder.
It is observed that mothers predominantly assume the role of primary caregivers of children with ASD, taking on central responsibilities in daily care, in the search for a diagnosis, and in accessing health and education services. This highlights the centrality of mothering in coping with the challenges imposed by the disorder3. This daily and exclusive caregiving is associated with high levels of emotional burden, depression, and restrictions on their own activities4-6.
Upon the challenges imposed by ASD, especially in social and communicative interactions, the bond between mother and child takes on unique characteristics. Mothering constitutes a continuous process of building the mother-child bond, which begins in gestation and is consolidated in the daily care, mediated by gestures of affection, acceptance, and dedication7. Thus, it expresses a relational dimension that is reconfigured in the face of the specificities of ASD, culminating in the development of singular bonding strategies, often based on gestures, expressions, and nonconventional forms of communication that respond to the sensory and communicative particularities of the children8-9.
The mothering of mothers of children with ASD emerges as a continuous exercise of reinvention and dedication, in which care goes beyond its functional aspect and manifests as a sensitive and affective expression of closeness to the children’s subjectivity. Understanding this experience from the maternal perspective - recognizing the unique challenges, desires and demands - is essential to produce more sensitive and contextualized reflections, as these experiences remain underexplored in the literature10.
In light of the above, this study had as its research question: what challenges and strategies are present in the daily lives of mothers of children with ASD in the construction and strengthening of the affective relationship with their children? Thus, the objective was to investigate the challenges faced and the strategies adopted by mothers of children with autism spectrum disorder in the experience of mothering.
METHOD
This is a qualitative study, supported by the Sensitive Creative Method (SCM)11, which uses creativity and sensitivity to promote the expression of thoughts, feelings, and experiences both individually and collectively. The SCM is structured around a triad composed of group discussion, participant observation, and sensitivity dynamics, carried out simultaneously.
The research was conducted at the State University of Pará (Universidade do Estado do Pará - UEPA), Santarém campus, Pará, Brazil. Thirteen mothers participated, selected according to the following inclusion criteria - being the mother of a child diagnosed with ASD; exclusion criteria - age under 18 years and/or presence of intellectual disability. In total, 20 mothers were invited to participate in the study; two refused the invitation and five did not attend the scheduled dates. During data collection, there were no withdrawals. Participants were invited by convenience, through the Tapajós ASD Association (Associação TEA’s do Tapajós), and meetings were scheduled after individual acceptance. Before data collection, the researcher participated in activities promoted by the association and was added to the participants’ WhatsApp® group in order to familiarize the mothers with her presence.
To enhance the understanding of the conditions under which the discourses were produced, the sociodemographic data of the participants were analyzed, recognizing the relevance of each mother’s life context in the constitution of their statements. Table 1 presents the participants’ profile.
Data production
Data production took place in July 2024, on two separate days, through the Creativity and Sensitivity Dynamics (CSD) entitled “Tree of Knowledge,” lasting approximately 1 hour and 30 minutes. To facilitate participation, two independent groups were organized: Group A, with seven mothers, held on the first day; and Group B, with six mothers, held on the second day, each consisting of different participants.
The CSD “Tree of Knowledge” is based on the collective construction of a tree, in which participants, guided by the Generating Debate Questions (GDQ), draw analogies between the components of the tree and the research subject. This symbolic production encourages reflection and expression of meanings on the topic, culminating in aspects discussed collectively. The tree, therefore, does not constitute an isolated result but serves as a support for the discursive production being analyzed11.
In this study, it was possible to establish an analogy between each part of the tree and the difficulties and strategies that mothers use in practicing mothering. The two GDQ were addressed within the same collective artistic production, in which participants placed post-its along the tree drawing, recording their statements and meanings.
The dynamics were implemented in five moments11: (1) organization of the space; (2) presentation of the research objectives and the steps of the dynamic, application of the sociodemographic questionnaire, and introduction of the GDQs (What challenges do you face or have you faced in establishing an affective relationship with your children? and What strategies do you use or have you used to strengthen this bond?); (3) individual artistic production, in which the parts of the tree symbolically represented emerging content; (4) sharing of productions and collective discussion; (5) joint analysis and data validation.
Data collection included audiovisual recordings using two smartphones and notes in a field diary. The team consisted of four assistants (undergraduate and graduate nursing students from UEPA and UEPA/UFAM - Universidade Federal do Amazonas), who alternated across the two collection days, and the main researcher (master’s student in Nursing at UEPA/UFAM), present on both days of data collection.
In Figure 1, the visual production of the CSD can be observed, in which the mothers arranged the post-its notes from the roots to the canopy of the trees, connecting the difficulties associated with mothering and the strategies developed to cope with these challenges.
Image representation of the artistic production from the CSD “Tree of Knowledge”. Santarém. Pará. Brazil, 2025.
Data analysis
The material was submitted to French Discourse Analysis (DA)12. In the first phase of DA, there is a transition from the linguistic surface to the discursive object, which involves transcribing the textual corpus (composed of the mothers’ discourses, transcribed as text in Microsoft Word®, field diary notes, and artistic productions), providing linguistic materiality to the discourse. The second phase involves moving from the discursive object to the discursive process, in which analytical devices are identified: interdiscourses, paraphrases, polyphonies, polysemies, metaphors, and the unsaid.
After this phase, there is the constitution of discursive processes, characterized by the identification of meaning effects produced by the discursive formations, followed by the systematization of the data into analytical tables, with identification of generating themes and emerging subthemes.
The research complied with the ethical guidelines of Resolution No. 466/2012 of the National Health Council (Conselho Nacional de Saúde - CNS). The study was approved by the Research Ethics Committee with Human Beings of UEPA (CEP/UEPA) (CAAE: 79477624,7,0000,5168; opinion no. 6,810,768). All participants signed the Informed Consent Form (ICF). To ensure anonymity, an alphanumeric coding system was used (M1 to M13). The study was guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist from the Equator Network.
RESULTS AND DISCUSSION
The discourse analysis revealed two main axes: the daily challenges in the development of mothering - with the subthemes “recognizing the signs and the impact of the diagnosis; burden, sacrifice, and helplessness; and search for explanations and re-signification of mothering” - and the internal and external coping strategies, with the subthemes “resilience and knowledge; therapeutic, family, and spiritual support; and communication, affection, and adaptation.”
Daily challenges in the experience of mothering
Recognizing the signs and the impact of the diagnosis
Maternal reports highlighted significant difficulties in the early recognition of ASD signs and in understanding the atypical behaviors exhibited by their children. In particular, there was an initial tendency to interpret quietness and low responsiveness as positive traits, associated with the social idealization of the “calm baby.” This perception, illustrated in the statements of M6, was gradually reinterpreted as the absence of affective exchanges became evident.
In the first months of F.'s life, I thought I'd won the lottery, that he was a super quiet baby, that he didn't cry (...) that he wasn't one of those babies who always wanted to be held (...). Then, it took people visiting me for them to start noticing things like, "Wow, but he breastfeeds, he doesn't make eye contact," "He's so stiff, he doesn't sit properly, etc." And I didn't notice that (...). (M6)
Then I started to notice this disconnect between me and him, right? (...) that he didn't cry when I held him; if I left him in the crib, he would stay there, he didn't cry because he was bothered by a dirty diaper, by being hot, by being cold (...). He seemed like a little doll (...). (M6)
The Discursive Formation (DF) in which the mother is embedded is influenced by normative conceptions of motherhood and child development, which contributes to the delayed identification of ASD signs. The idealization of the calm baby can mask early indications of the disorder, especially in contexts marked by limited knowledge about the spectrum. The process of perceiving the “disconnection” between mother and child occurs gradually, as the absence of eye contact and seeking comfort is reinterpreted as a warning sign. The metaphor of the “little doll” symbolically conveys the frustration of affective and communicative expectations, revealing the impact of the rupture with the traditional maternal ideal.
These statements showed that mothers, from the first signs of atypicality, faced a reality different from the idealized one, marked by doubts and a solitary search for understanding. Some studies indicate that early signs are generally perceived between 9 and 15 months, especially in social interactions, with a notable absence of eye contact and responsiveness, which directly affect the mother-child bond13-15.
The interdiscursivity present in the statements of family members and visitors (“he doesn’t make eye contact,” “he is so stiff”) plays a relevant role in reconstructing maternal understanding, highlighting the role of others in the development of critical awareness16. This interaction facilitates the identification of atypical behaviors based on socially constructed knowledge about child development.
The statement of M6 reveals a discursive shift from idealized motherhood to an experience permeated by strangeness and the deconstruction of previously naturalized meanings. The formation of a new perspective on the child, mediated by daily observation and listening to others, reveals the complexity of discovering ASD and the need for qualified support to strengthen the affective bond and diagnostic understanding.
The difficulties faced in the process of seeking a diagnosis are perceptible in M12’s discourse.
S. was always playing with the cars, he did it like this (lining them up) (...). I went (...) to Belém with him, then I got there and told the doctor (...). Then she said, "But S. doesn't have the characteristics of an autistic child, he talks." And then it was a struggle, right? Constant. I had a support network there in Belém, several specialists, and no neurologist, not a single neurologist, diagnosed autism at two years old, but even so, I never stopped researching, researching, researching. Then when he was already three years old (...), another doctor diagnosed him as autistic, right? So, from then on, I fought to see if he really was autistic (...). (M12)
This statement reveals the constant struggles faced by a mother of a child with ASD since before her son’s diagnosis, marked by family estrangement in the search for answers, the impacts on mental health, and the persistent doubt that led her to a solitary investigation for explanations. Initially, her greatest difficulty was the lack of knowledge about the disorder and its signs, revealed in her speech about the stereotypies presented by the child.
When M12 reproduces the doctor’s statement - “But S. doesn't have the characteristics of an autistic child, he speaks” -, she exposes the professional lack of knowledge about the spectrum and highlights the unpreparedness of some healthcare professionals to perform early diagnosis.
The discourse highlights both the unpreparedness of these professionals and the suffering resulting from a solitary search for answers. The repetition of “research” emphasizes the persistence and maternal self-initiative in the face of institutional neglect. This investigative movement reflects “primary maternal preoccupation”7, in which the mother is entirely focused on the child's needs, acting in a protective and resilient way even in contexts of uncertainty.
Regarding early intervention, scientific evidence shows that early detection of signs facilitates prompt diagnosis and more effective interventions, contributing to the development of various areas such as communication, cognition, language, adaptive behavior, and emotional regulation, especially when a multiprofessional team is involved17.
Some studies have identified18) deficiencies in the initial training of these professionals, marked by a superficial approach to ASD in educational institutions, which compromises adequate care and the effectiveness of early interventions. In this sense, the urgency of implementing continuing education programs aimed at improving the care offered to children and their families is highlighted.
Maternal reports revealed different ways of receiving the ASD diagnosis. For some mothers, the diagnosis represented relief and validation; for others, it was marked by resistance, ambivalence, and denial. This diversity of experiences highlights the affective and discursive complexity involved in encountering the diagnosis.
And I also used the diagnosis as a strategy (...), because I could say: “No, L. is like this because he is autistic, it's not that I'm not setting limits, it's not that I don't know how to raise my son, he is like this, and we will work from there.” So, the diagnosis for me (...) was fundamental; I went through that period of mourning, I didn't suffer, for me it was really the answer I was looking for. (M7)
Dr. (neuropediatrician), he doesn't like clothing labels, he doesn't like the smell of certain foods, he doesn't like textures, he doesn't step on the ground, he doesn't stay in the sun, he doesn't like to sweat (...). Then, right away, she said: “We have a little ASD here, do you have any doubts about that?” I said: “I do.” But we still have doubts, don't we? (M10)
Deep down, deep down, what we want to hear is: “no, it’s not, it’s not, it’s not.” (M9)
M7’s discourse expressed relief upon receiving the ASD diagnosis, reporting that the diagnostic confirmation relieved her of the subjective responsibility for her child’s behavior, often attributed to failures in maternal education. In this context, the diagnosis functioned as a discursive shield against social criticism that blames the mother for any behavioral deviation of the child.
The statement also reflected the polyphony of social voices that impose idealized standards of motherhood, revealing that the previous suffering was not due to the child’s condition itself, but to the lack of understanding and normative pressure. The metaphor of “mourning” is reinterpreted as part of a process of reworking reality and constructing meaning.
On the other hand, the statements of M10 and M9 highlighted coping with uncertainty and denial. M10 described a series of atypical sensory behaviors but still expressed doubts about the diagnosis suggested by the neuropediatrician. Her ambivalent stance reflected the desire to understand while simultaneously struggling to accept the implications of the diagnosis. The physician’s use of the term “little ASD” served as a strategy to soften the emotional impact but also indicated the symbolic weight of naming the condition. M10 drew on medical knowledge but intertwined it with common-sense perceptions, illustrating a typical interdiscursivity in contexts of meaning transition.
This discursive sequence culminates with M9’s statement, which made explicit the desire for denial. This utterance revealed the tension between the empirical evidence of the signs and the wish for the diagnosis not to be confirmed. The unsaid emerged implicitly, exposing an internal conflict that strains the mother’s discursive position as caregiver, interpreter, and mediator of the child’s experiences. This tension confirmed the permeable and vulnerable nature of the process of recognizing and accepting ASD.
The feelings of denial and resistance to the diagnosis revealed an intense and complex emotional experience, requiring the re-signification of reality and the confrontation of unexpected challenges. Denial, as a psychic defense mechanism, acts unconsciously to protect the subject from painful experiences19. In the case of these mothers, this mechanism manifested itself in the initial refusal to accept the child’s condition, as it breaks with the ideal of motherhood and with the image of the “perfect child”20.
Overload, renunciation, and helplessness
Other challenges emerge in the reported experiences, such as managing challenging behaviors and communication difficulties with their children.
“L. is very aggressive when he’s in crisis, and my difficulty with him to this day was what led me to seek help (...). He would gather momentum and smash his head against the wall with all the strength he had, bleeding from his nose, getting a bump on his forehead. The more I tried to restrain him, the more upset he became, the more he tried to hit. And he has always been a very big baby for his age; so, we always had a lot of difficulty containing him. Today, he is four years old, still has many crises (...), and they are always very aggressive. (M7)
Another challenge was communication with the child. I placed communication with the child in the section (...) of the leaves, of the canopy, because I think (...) this process of photosynthesis, of giving and receiving nutrients, is very important. (M3)
M7’s statement expressed the experience of suffering and helplessness in the face of her son’s aggressive crises, especially in situations that threaten his physical integrity. The difficulty in restraining the child, combined with the lack of effective management strategies, intensifies maternal strain and reinforces the perception of autism as a condition associated with instability and family suffering. Although grounded in concrete experience, this perspective also reflects social constructions linking the disorder to violent behaviors and caregiver overload.
M3’s statement was marked by a strong subjective dimension in employing the metaphor of photosynthesis to describe the communicative process with her child. By associating communication with a natural cycle of “giving and receiving nutrients,” the mother constructs a sense of continuous, vital exchange, comparing interaction with her child to a process essential to life, just as photosynthesis is essential for plants. This metaphor assigns communication a fundamental role in developing the affective bond and in the practice of mothering.
Throughout the dialogue, the mothers continue with their accounts of the daily challenges of caring for their children.
J. once made me stop the motorcycle in the middle of a very busy street because I changed the route, you know? He is very rigid (cognitive rigidity). I stopped and asked, “J., what’s wrong?” He said, “Mom, this is not the way, you went the wrong way.” I said, “No, my son, I went this way because I wanted to, I want to try new paths (...).” He said, “No, I don’t want to go that way,” and got off the motorcycle. (M8)
My son has already gone for three months without eating a grain of rice, he didn't eat rice, he didn't eat meat, he didn't eat chicken, he didn't eat eggs (...). And it's been like this, I don't know how long it will last (...). It's very difficult to deal with selectivity. It's the most painful part for us. (M11)
M8’s statement revealed the impacts of her son’s cognitive rigidity on the family routine, especially in the experience of a constant state of alert in the face of the unpredictability of behaviors that put the child at risk. Her statement highlighted the conflict between the mother’s need for adaptation and the son’s resistance to change, demonstrating the difficulty of negotiating with someone who seeks to maintain control of the environment. The son’s refusal to accept changes requires patience and continuous strategies from the mother.
This experience is further reflected in discourses about feeding, where mothers articulate the challenges of food selectivity as one of the greatest difficulties. M11’s account expressed the unpredictability of her son’s eating habits and reinforced the lack of control over the process. Moreover, it revealed the suffering associated with food refusal, not only due to concern for the child’s health but also because of the emotional weight involved in this daily care. The expression “for us” suggests a collective dimension, pointing to the identification with other mothers who share these experiences.
Although food selectivity is an important factor of maternal suffering, its emotional impacts remain underexplored21. Dietary limitations affect psychological well-being and highlight the need to value maternal experiences, as well as to provide professional training to assist in the proper management of these situations, minimizing their negative effects.
The economic impact emerged in the mothers’ statements when they reported the exhaustion and high financial cost of their children’s therapy routine.
My father-in-law, now that he is sick, used to help me with the therapies. The expenses are higher now because we are paying for Uber, right? To be able to take them and bring them back. If the therapies were all on the same day it would be good, but it’s all scattered, and it’s half an hour here, 105 BRL there. So, it’s a lot of expenses, but it’s like that. (M8)
Our therapy routine is also intense. We do occupational therapy, psychologist, we have follow-up with a nutritionist, because both of them have (...) selective eating, but they also have gluten intolerance, lactose intolerance (...). We control everything, we control the sugar level, the gluten level, the lactose level, we control everything (...). (M11)
The focus of M8 and M11's statement is on the financial, logistical, and emotional demands involved in the treatment and therapeutic follow-up of their children. The speech reflected a reality in which the lack of public support or effective policies for autism creates an overload for families, especially for mothers, who have assumed most of the responsibilities. The phrase “but that’s how it is” (M8) revealed resignation in the face of the lack of alternatives, reaffirming the normalization of women’s caregiving burden.
The fragility of care in the Unified Health System (Sistema Único de Saúde - SUS) further aggravates this reality. Unprepared professionals and high demand compromise proper diagnosis and follow-up, often leading to waits that exceed two years22. In this context, many families seek alternatives in the private sector, which entails high costs for therapies, medications, and frequent transportation (22-23.
Some mothers reported difficulties balancing work with their children’s therapies, while others left their professions entirely to dedicate themselves fully to caregiving.
And now (...), with my job, I'm trying to focus a lot (...) on this part of managing to reconcile: me, him - since it's just the two of us in the house now, for the time being, I hope that changes as soon as possible - and his father, who comes on weekends, and my work, you know? Therapies etc. These are things that are quite complex. (M3)
S. was born, I still worked for a year and then I found out he was allergic. So I decided to stop working completely, you know? And that was it, it was just his life, just taking care of him. (M12)
M3’s statement highlighted the difficulties of reconciling motherhood with professional life, aggravated by the absence of a support network, especially from her spouse, who works in another city. The statement “These are things that are quite complex” summarized the perception of being immersed in a context that is difficult to explain, but which directly impacted her experience. Reconciling motherhood with work and household chores presented a challenge, leading M12, for example, to give up her career, which, added to the absence of a support network, intensified physical and emotional exhaustion24.
M12’s discourse reinforced this scenario by assuming a resigned position in the face of renouncing her own life, as evidenced by the statement “just taking care of him”. The use of “that’s it” signals a conformist acceptance of an imposed reality, revealing the abandonment of herself for the sake of her child. Both statements evidenced a discursive formation anchored in the social ideal of selfless motherhood, which naturalizes the exclusion of the mother’s personal needs and obscures the negative impacts of not taking care of herself on her physical and mental health.
It is therefore essential to discuss the social role assigned to women as natural caregivers of the family25, in which women’s professional advancement is hindered by stereotypes that associate women with domestic tasks and the exclusive care of children- a scenario that is even more challenging in the motherhood experienced by these women.
This social construction contributes to the feeling of guilt faced by many mothers when they delegate the care of their children to others, whether to work or to care for themselves. Many mothers take on full responsibility for their children on their own, believing they are irreplaceable in this role. This emotional burden, combined with the exhausting routine, directly impacts the physical and psychological well-being of these women4.
In this context, the importance of self-care and therapeutic interventions becomes evident, as well as the creation of support spaces and public policies that promote the mental health of these mothers26, fundamental for coping with the challenges imposed by motherhood and for the development of resilience.
The search for explanations and resignification of mothering
The dynamic space allowed the mothers to express their subjective dimensions in the search for explanations about autism, reflecting not only the desire to understand the disorder but also the internalization of discourses that can generate guilt and anxiety.
Sometimes, we wonder, right? What if this hadn't happened? What if it wasn’t like this? (M10)
But let me ask you: but this, maybe from the fall, maybe from the kick, does it have anything to do with autism, right? (M12)
The mothers say no.
That's what we talk about; we question ourselves, if, if (...). (M8)
We keep asking ourselves why. (M9)
I took medication from the beginning. (M10)
Paracetamol during pregnancy (...). (M8)
According to the literature, 80% of the time if your child is going to be born autistic, 80% is genetic in your family, and the rest is some problem during childbirth. Did something happen during your delivery? There's a probability of being born… (with the disorder). (M13)
The statements of the mothers revealed a subjective search for meaning in light of the autism diagnosis, expressing doubts, anxieties, and attempts at explanation. Questions like those from M10 and M9 showed a need to understand the possible causes of the disorder. This reflective movement, stimulated by group dialogue, led to the articulation of different hypotheses - genetic (M13), related to medication use during pregnancy (M8 and M10), or traumatic events (M12) - indicating an attempt to rationalize or control the unknown.
Interdiscursivity is manifested in the combination of medical-scientific and popular discourses, highlighting how different forms of knowledge are appropriated in the daily lives of the mothers. For example, the mention of medications like paracetamol during pregnancy points to the internalization of discourses that place responsibility for the child’s health on the mother’s actions. This dynamic reflects ideologies that reinforce social control over the female body, especially during pregnancy.
M13’s discourse, stating that “80% of cases are genetic,” shows how scientific data is mobilized to support a discursive authority, even if simplified. This appropriation may also represent an effort to mitigate maternal guilt, shifting responsibility to biological factors perceived as inevitable.
This search for explanations reflects the attempt to make sense of the suffering, characteristic of anxiety contexts27. In this regard, previous studies3-4 have confirmed this emotional pattern, highlighting that mothers’ mental health is significantly affected after diagnosis. This vulnerability is aggravated by the difficulty of accessing scientific information about the multifactorial origin of autism, which contributes to feelings of guilt and confusion.
The environment of collective debate led mothers to express the challenges and strategies to strengthen the affective bond with their children.
“There has to be a foundation: patience. We have to have love all the time, but without patience (...) because up to here, with love, you want to run away. So I placed love right here (points to the trunk of the tree) (...). Then, resistance, because you have to be firm; otherwise, you’ll want to give up. Without it, you’ll want to lock yourself in the room and cry, right? (M2)
M2’s discourse revealed the emotional exhaustion experienced by mothers of children with ASD, as she states, “up to here, with love, you want to run away,” highlighting that, although love is essential, it’s not enough to face the daily adversities. In this context, she associates resilience and emotional self-control with the virtues necessary to remain firm, even in the face of the desire to escape. The “desire to cry” is expressed as a release valve for accumulated suffering.
This statement challenges idealized discourses about motherhood as something instinctive and easy, revealing a reality marked by continuous challenges, daily overcoming, and the effort to maintain emotional balance in the face of the demands of mothering.
The dialogue revealed attributes of motherhood, such as the understanding that child development is unique - and even more particular in the case of neurodivergent children.
Today I see it like this: that many of the things we stimulated in F. were in a very imposing way (...). We only saw him as autistic; we didn't see him as a boy (...). Sometimes we get so obsessed with: “No, we have to make him sit down to eat properly” or “We have to maintain a sleep routine.” But his life is happening in a different way, which isn't ours. Then sometimes: “Come on, let's read here, my son, come on?” Moment (...) of stimulation, let's read, let's read. And the boy is there (...) (with his arms crossed). Then one fine day, the aunt arrives: “Hey, read this to me quickly.” Then he says: “Okay, I'll read, because nobody's forcing me.” Then we (...) let him be a little more comfortable (...) so he could come and show us that he wants to learn too, what his preferences are (...). There are certain battles that don't need to be fought; let's try to fix other things (...). (M6)
M6’s discourse revealed a journey of maturity and a change in perspective regarding her child with ASD. Initially focused on trying to “normalize” atypical behaviors, she admits having gone through an obsessive phase, constantly trying to correct her child, driven by a logic of continuous intervention. This posture, as she recognized, ended up being harmful both to the child and to herself, as it caused overload and frustration in the face of unfulfilled expectations.
By starting to see her child as a whole person - “a boy” before being “an autistic” - M6 criticized the reductionism present in discourses that prioritize the diagnosis over the child’s identity. The phrase “left him a little more at ease” symbolically marks this discursive transition, indicating a change in the way she dealt with her child, now valuing his autonomy and respecting his rhythm.
By stating “there are certain battles that don’t need to be fought,” M6 expressed a critique of the normative model that insists on fitting neuroatypical children into neurotypical patterns, while revealing a process of acceptance, more humanized care, and a review of the priorities of mothering. Some studies have indicated that mothers often internalize social patterns of normality, seeking to adapt their children to behaviors considered socially desirable, which can intensify maternal stress and suffering28.
By reflecting on these attitudes, the mother begins a process of awareness, recognizing that development occurs gradually and at the child’s pace. This change in perspective - signaling a break from the normative and ableist logic - aligns with the concept of critical consciousness16, which is built from analyzing one’s own reality and enables overcoming oppressive views shaped by historical and social conditions.
Internal and external coping strategies
Resilience and knowledge
When talking about coping strategies, the mothers revealed their ability to overcome challenges and seek alternatives to the problems that arose.
I think that resilience, for me, is what has been the basis, because it seems that we take one step forward and two steps back. You get the medication right, then, after a while, it doesn't work anymore; You have to go back, you have to put something else on, you go to the doctor, the doctor doesn't give you a choice, you need to look for another doctor somewhere else, until you figure things out. So, resilience has practically been my middle name. (M7)
What, for me, as a mother of a child with autism, was fundamental, what was my root, right? What really structured me, my whole tree, was knowledge. It was seeking, it was researching; this helped me a lot with the issue of alternatives, it helped me to look for some behavioral methods (...) knowledge to know what I'm going to say at school (...). (M3)
The statements of M7 and M3 reflected two central pillars: resilience and knowledge. In M7, the metaphor "one step forward and two steps back" summarizes the unpredictable nature of autism and the constant effort of readjustment. M3, on the other hand, recognized learning as a structuring force, articulating scientific knowledge and maternal knowledge as instruments of empowerment. Both narratives revealed the development of emotional and cognitive skills, which strengthen the practice of mothering.
2.2 Therapeutic, familial, and spiritual support
The mothers also emphasized the importance of therapeutic intervention and their support network as fundamental for controlling atypical manifestations and meeting caregiving demands:
Therapy and medication, for my reality, were essential from the moment of diagnosis until today (...). He had no brakes, he was always very, very hyperactive, impulsive, and he always, especially in environments he had never been in, never seen before, he would go to every little corner and touch everything with his hand. And, for those who don't understand, that's bad behavior. (M4)
Support and support network too (...) support both with therapies and from my family, because we hear a lot of nonsense: “Oh, he's like that because you let him be like that, because you spoil him, because you don't set limits”; that's what we hear most.. (M7)
The mothers' statements revealed the influence of social voices that blame the maternal figure for the child's behaviors, highlighting the presence of a normative discourse that reinforces gender stereotypes. Such statements denounced social misunderstanding of the atypical manifestations of autism, based on judgments that disregard neurological specificities and reinforced stereotypes between “obedient” and “undisciplined” children.
The importance of therapeutic and familial support was highlighted by M7. Her speech revealed the significance of a supportive and non-judgmental network in coping with the adversities of maternal care. The expression “nonsense” exposes both the emotional exhaustion from disqualifying discourses and the resistance of these mothers to the normalization of their experience.
Therapies and medications appear as essential strategies in the coping process, even though they are not directly created by the mothers. M4, by saying “for my reality,” points to a singular understanding of autism and acknowledges that the effects of treatments vary from one individual to another. Her narrative legitimizes medical-therapeutic intervention as a transformative resource, but without generalizations, highlighting a discourse based on practical and contextualized experience.
Literature corroborates that family and community support reduces emotional overload and promotes self-care6,15. In this context, the sharing of experiences among atypical mothers acquires therapeutic value, promoting mutual acceptance and validation of experiences.
The mothers’ statements also revealed the role of spirituality as a coping strategy.
My strategy, which I put here, right (points to the tree trunk), it has been my foundation from the beginning; it is God and patience (...). It is necessary to be aware that, without patience and without God, I would not be able to do it (...). So, for me, the fundamental thing is patience and God, always. (M4)
The discourse of M4 revealed a maternal identity marked by resilience, supported by faith and patience - elements she named as “my strategy.” The repetition of “patience and God” emphasizes the centrality of these pillars in her experience with autism, linking care and religiosity in saying “without God, I wouldn’t be able to.” This construction assigns a fundamental role to faith in coping with adversity, reflecting both personal convictions and cultural influences that value spirituality as emotional support.
Communication, affection, and adaptation
Communication is pointed out by mothers as one of the main difficulties encountered in daily life with their children, which leads them to develop specific strategies to stimulate this skill and strengthen affective bonds.
I started to realize that he was systematic (...). And that's when one of my strategies was alternative communication (...). So, when I wanted him to understand me, to know that I was his mother - because he didn't understand that I was his mother - then sometimes I would put “mom-m-y” (...). Then, I would put it there; wow, I got photos, made a family tree, everything, everything possible so that he could make this alternative association, right? (M3)
He used to have (difficulty hugging), but, after so much encouragement, today he hugs, (...), he kisses. One thing he didn't say was “I love you,” he didn't say; and I practice every night: “M., Mommy loves you, do you love me? How much do you love me?” Now, he already says (...): “I love you more than the ship,” “I love you more than the moon.” Today he says that because every night I did it, encouraging him, right? (M13)
In M3’s discourse, we see a process of recognizing the child’s particularities, described as “systematic,” which highlights her attempt to understand his unique way of functioning. Based on this perception, the mother resorted to alternative communication, such as using photos and constructing a family tree, to help him associate the word “mother” with her figure. This adaptation revealed a redefinition of the communicative act, which is now structured not only to transmit information but also to affirm maternal identity and construct affective belonging.
Similarly, M13 described a routine of stimulations aimed at developing verbal and physical expressions of affection, such as hugs, kisses, and declarations of love. By repeating expressions like “Mommy loves you” daily and inviting her son to respond, she builds a space of emotional reciprocity, which materializes in the child’s words: “I love you more than the ship,” “I love you more than the moon.” These metaphors give concrete dimension to the feeling, indicating that affection can also be learned and expanded with maternal mediation.
Regarding this theme, some studies have pointed out the importance of mothers adapting their own communication mechanisms to establish more effective bonds with their children29. In typical developmental contexts, communication evolves from nonverbal to verbal language7, however, in conditions such as ASD, this transition may be compromised, requiring the use of gestures, expressions, images or alternative and augmentative communication systems (AAC).
In the intragroup dialogic space, other aspects related to overcoming difficulties were pointed out by mothers, such as some approaches that bring greater security to the child and that prevent the manifestation of disruptive behaviors.
I leave the house, I talk, there will be people, I make the prediction (...). When we get to a corner he starts (shows through body expression the child’s impatience) (...). Then, I pick him up, hold him (...): “Let's smell the little flower? Smell the little flower.” He smells it. “Let's blow out the candle?”. That gives him that self-control, he starts controlling himself. (...) “Look, control your head so you can deal with this frustration, because you will grow up; in the classroom there will be boys you won't like, in society there will be children you won't like; the day you have to go to college, there will be a job you won't like; there will be people there, there will be a smell, a perfume (…)”. (M11)
In M11's discourse, several strategies for dealing with the child’s crises stand out, starting with the early identification of behavioral triggers, highlighting the importance of calmness to avoid escalating episodes. The mother recognized autism as a condition that involves sensory and emotional challenges, applying playful regulation techniques that aim to make the environment more understandable and less threatening for the child. Her speech revealed a conscious commitment to the constant incorporation of these practices into daily life, reinforcing the importance of continuous adaptation.
Continuous adaptation to the demands of treatment and the limitations of autism spectrum disorder (ASD) leads mothers to develop strategies to cope with challenging behaviors, cognitive inflexibility, sensory sensitivity, and food selectivity, which are frequent sources of stress21. Effective management involves understanding the context, identifying triggers, maintaining calm, establishing routines, and anticipating changes, providing predictability that reduces anxiety and crises30.
The projection for the future is present in the mother’s discourse, which emphasized teaching self-control and cognitive flexibility as fundamentals for her child’s social inclusion, preparing him to face challenges in school, work, and social settings. This vision reinforced the concern for the child’s autonomy and comprehensive development.
It is recognized as a limitation that the data were produced in a collective and mediated situation which may have influenced the participants’ modes of enunciation. As this is an interpretative discourse analysis, the conclusions refer to the specific context studied and are not intended to be generalized.
FINAL CONSIDERATIONS
The mothers’ discourses revealed that the challenges of mothering begin from the diagnosis, which is marked by gaps in the healthcare system, high costs, and the slow process. Added to this are feelings of guilt, denial, overload, and uncertainties in response to the demands of caregiving and difficulties in understanding their children’s behaviors. As for the strategies used, resilience, learning, affection, support networks, and adaptability stand out as essential in strengthening the maternal bond amidst the demands of daily life.
This study broadened the understanding of the experiences of mothers of children with ASD, based on their own experiences, valuing sensitive listening and dialogue. It is therefore recommended that healthcare professionals, especially nurses, receive continuous training to identify early signs of ASD, support families and focus on the mental health of caregivers. These findings can support management strategies and caregiving interventions centered on families, while reinforcing the importance of future research that deepens the understanding of mothering children with ASD and expands the dialogue between users, professionals, and managers.
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Access to the dataset is available upon request from the corresponding author.
Source: Prepared by the authors.