"And once the storm is over, you won't remember how you made it through, how you managed to survive. You won't even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won't be the same person who walked in. That's what this storm's all about."
HARUKI MURAKAMI
Behind the Scenes: Mothers' Perspectives on Autism Parenting
Parenting a child with ASD is inherently stressful and challenging, particularly in countries with limited support services. The literature indicates that parents of children with ASD often experience impaired mental health, including anxiety and depression (1), leading to a lower quality of life and wellbeing. They experience higher levels of stress as compared to parents of typically developing children, and sometimes even those of children with other childhood disorders like Down’s syndrome or ADHD (2). Previous studies have shown that mothers, in particular, experience heightened psychological distress, increased caregiving burden, health-related problems, lower resilience levels and difficulties in various aspects of family life, including marital and sibling relationships and family socialization.
In recent years, there has been an increase in the number of studies conducted on parents raising children with ASD, particularly from a maternal perspective. In exploring the impact of maternal stress among mothers of children with autism, extensive evidence supports the conclusion that mothers generally experience higher levels of parental stress compared to fathers. This is influenced by several factors: the predominant caregiving role mothers typically assume, the emotional intensity of managing their child's autism-related challenges, and societal expectations around childcare responsibilities.
It's crucial to acknowledge the variability among families and the diverse ways fathers contribute to caregiving when discussing maternal stress in this context. While mothers often shoulder a significant caregiving burden, there are instances where fathers take on substantial responsibility for their child with autism. Despite these variations in family dynamics, numerous studies and meta-analyses still find that mothers report higher levels of stress, anxiety, and caregiver burden than the fathers (3). This highlights the unique challenges mothers face in caring for children with autism, even when fathers are actively involved in caregiving.
One of the studies revealed that mothers were not only distressed, but also were vulnerable to severe medical conditions such as cancer and had an increased risk of early death (4). Another study found that the diagnosis of autism had a negative effect on the mothers’ social life and mental well-being; caring for a child with autism increased stigmatization of both mothers and their children; financial concerns, such as economic burden and the need for extra income to cover the lifelong high cost of ASD-related special education and treatment, are also important factors that contribute to increased parental fatigue, specifically in low-income families (5).
Needless to say, the severity of autism symptoms and the level of disability closely affect the level of daily stress load on mothers (6). For example, a child with lower level of cognitive development and functional abilities may increase the impact of parental stress due to the child’s propensity for long-term dependency (7). Unfortunately, children with developmental disorders and their families often face a lack of access to equal opportunities in education and health (8)- either because the services offered by the state are minimal or, in general, do not best meet the wholistic needs of affected children.
In his study, Dr. Dimitros Papadopoulos shared insightful feedbacks from the mothers of children with autism (9):
“After the initial diagnosis, I felt disconnected from myself. I felt always tired and wanting to stay in bed, and I did not control my child’s behaviour.”
“I believed that I did something wrong; I blamed myself because my child was not normal; I wondered if this condition was caused by my behavior as a mother. I was distressed for a long time after the diagnosis, and I cried every day before sleeping.”
“My son needs much attention and focus 24 h per day in order to control his behavioral difficulties. You know, it’s very frustrating to have to treat his needs every day. Sometimes, I feel I do not love this child enough, and this thought makes me feel a sense of guilt.”
Many mothers describe feeling distress linked to not knowing what they could do, or who they could rely on, to help their child. This sense of uncertainty emerged as a sense of frustration.
“I think the feeling of powerlessness is the worst; you want to do the best for your child, but you realize that you are not able to offer help”.
“Living with a child with autism is totally different from what the textbooks write.’’
Mothers report constant worry about the long-term impact of autism on the child’s future, such as the transition from childhood to adolescence, uncertainty about the child’s education and, subsequently, job opportunities, living conditions, and the ability to adapt successfully to adulthood.
“You start worrying what’s going to happen to her long term. I’m thinking 10–20 years from now how my child will fit to the environment, will she have the ability to create romantic relationships? Will she be able to study in college to earn money and live independently?”
In addition, many mothers notice that after the child’s diagnosis, their relationship with their spouse changed. Most mothers would feel as though they had neglected the needs of their spouse, leading to emotional distance and deterioration compared to previously healthy connections. However, when child at times displays a positive behaviour change some mothers would develop hope for relief and positivity in family life.
“There are times that you feel disconnected from your spouse, and the child’s needs are the priority; the husband is sort of second, third down the line if there are other kids.”
“I judged and criticized my husband because he had a different perspective on the child’s treatment; we fought a lot, yelled and screamed, we just didn’t get along the child’s condition affected our intimate life and finally we divorced.”
Mothers often describe that having a child with ASD influence their relationship with their other typically developing children in terms of a reduction in the time the other sibling and mother would spend together in shared activities.
“My son has become the centre of the family life, which I don’t really like. However, me and my husband both have limited available time and energy to focus our attention on the needs of the other, neurotypical, sibling. This often leads to feelings of guilt and inappropriate parenting.”
Many mothers feel that financial strain is also a major concern. Indeed, it is not rare when families are forced to make significant lifestyle adjustments. Some mothers are forced to stop working or make career-related sacrifices, such as seeking an employer more understanding of the demands of raising a child with ASD.
“These therapies are too expensive and exceeded the family financial resources.’’
“I have had to put on hold many things. I stopped working and left my PhD studies to give my full attention to my child’s care.”
Mothers say that at some point they were likely to experience autism stigma that forced them to remain at home more frequently, rather than going out. Reasons for stigma included negative social stereotypes regarding neurodevelopmental and mental illnesses. They also report their children were treated differently by typically developing children in school, as well as by teachers and other parents.
“You understand other people looking at you differently like we are coming from a different planet. I think society does not accept both me and my child. Stigma has changed my inner self; I hide from others that my child has autism and receives specific treatments.”
The quantity and quality of their social ties and relationships may decrease significantly for mothers with neurodivergent kids due to such factors as feeling that the mothers could no longer relate to old friends since the latter did not have similar concerns, limited time to spend socially, and an inability to bring children to social gatherings due to behavioural concerns.
“I had close friends from college who don’t have a child with disability and I enjoyed that time. Now, I communicate more with autie mommies, that makes me feel comfortable. Sometimes, I miss my old life. I miss one of my best friends. However, having a child on spectrum, your whole life feels different.’’
On the other hand, employed mothers seem to be more likely to feel socially included compared to mothers without employment outside the home.
“I’m very lucky to have my job and career; I feel accepted at work and I can show a different aspect of my identity.’’
The study mentioned above, while small in scale, provides valuable insights. One of its primary concerns is the overwhelming responsibility and emotional strain experienced by mothers. The relentless demands of caregiving, coupled with navigating the often fragmented healthcare and educational systems, contribute to heightened stress levels and feelings of isolation. Such challenges are not merely anecdotal but reflect systemic gaps that require systemic solutions.
Addressing the challenges faced by mothers of children with autism requires a collaborative effort from all sectors of society—policymakers, healthcare providers, educators, researchers, and the community at large. It's essential to listen to mothers' voices and translate their experiences into meaningful action. Only through a unified commitment to evidence-based support, mothers and families can be empowered to navigate the complexities of autism with resilience and hope.
Practical Strategies for Mothers of Children with Neurodevelomental Conditions
Empower Yourself with Evidence-Based Information:
Seek information from reliable sources grounded in scientific evidence. Explore reputable websites, books authored by experts in neuridevelopmental disorders, and guidance from experienced healthcare professionals specializing in autism care.
Build Your Support Network:
Create a strong support system with family members, friends, and other parents of children with autism. Connecting with others who share similar experiences can provide invaluable emotional support and practical advice.
Be an Advocate for Your Child:
Take an active role in advocating for your child's needs in educational and healthcare settings. Understand your child's rights, collaborate with teachers and therapists, and actively participate in Individualized Education Program (IEP) meetings.
Explore Effective Interventions:
Consider evidence-based interventions like Applied Behavior Analysis (ABA), speech therapy, occupational therapy, and social skills training. These therapies have proven effective in enhancing communication, behavior, and overall quality of life for children with autism.
Prioritize Your Well-Being:
Make self-care a priority. Take time for relaxation, engage in hobbies, exercise regularly, and seek support for your mental health needs. Taking care of yourself enables you to better support your child.
Stay Updated on Research Advances:
Stay informed about the latest developments in autism research and emerging treatments. Being aware of new findings offers hope and opportunities to explore additional avenues for your child's development. Additionally, keep in mind that there are sometimes exciting research opportunities available for children with NDDs to participate in. These opportunities can contribute to advancements in understanding and treatment, potentially leading to improvements in their condition and offering new possibilities for their health and well-being.
Celebrate Every Achievement:
Recognize and celebrate every small victory and progress your child makes. Each milestone is meaningful and represents significant growth.
Utilize Community Resources:
Access local autism support groups, community organizations, and government resources tailored to your region. These resources offer practical assistance and connect families with valuable opportunities for support and information.
References:
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Kara, K., Kara, O.K., Sutcu, G. et al. The Relationship Between Fatigue and Quality of Life in the Turkish Mothers of Children with Autism Spectrum Disorder. (2024) J Autism Dev Disord https://doi.org/10.1007/s10803-024-06398-z
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Hayes, S., Watson, S. The Impact of Parenting Stress: A Meta-analysis of Studies Comparing the Experience of Parenting Stress in Parents of Children With and Without Autism Spectrum Disorder. J. Autism Dev. Disord. 2013, 43, 629–642
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Yesilkaya, M., & Magallón-Neri, E. Parental Stress Related to Caring for a Child With Autism Spectrum Disorder and the Benefit of Mindfulness-Based Interventions for Parental Stress: A Systematic Review. (2024) Sage Open, 14(2). https://doi.org/10.1177/21582440241235033
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Estes, A., Olson, E., Sullivan, K., Greenson, J., Winter, J., Dawson, G., Munson, J. Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain Dev. 2013, 35, 133–138.
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Gobrial, E. The Lived Experiences of Mothers of Children with the Autism Spectrum Disorders in Egypt. (2018) Soc. Sci. 2018, 7, 133. https://doi.org/10.3390/socsci7080133
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Miranda A., Mira A., Berenguer C., Rosello B., Baixauli I. Parenting stress in mothers of children with autism without intellectual disability. Mediation of behavioral problems and coping strategies. (2019) Frontiers in Psychology, 10, 464. https://doi.org/10.3389/fpsyg.2019.00464
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Kishimoto T., Liu S., Zhang L., Li S. How do autistic severity and family functioning influence parental stress in caregivers of children with autism spectrum disorder in China? The important role of parental self-efficacy. (2023) Frontiers in Psychology, 14, 1–2. https://doi.org/10.3389/fpsyg.2023.956637
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Rafii, F., Seyedfatem, N., Asgarabad, H. The life of mothers of children with Autism: A grounded theory study. (2024) Revista Latinoamericana de Hipertensión. Vol. 19 - Nº 4, 2024. ISSN: 1856-4550. DOI: http://doi.org/10.5281/zenodo.11260914.
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Papadopoulos, D. Mothers’ Experiences and Challenges Raising a Child with Autism Spectrum Disorder: A Qualitative Study. (2021) Brain Sci. 11, 309. https://doi.org/10.3390/brainsci11030309
Real-Life Stories.
Nadya is a mother of a 7-year-old son with autism, and in our sessions, we've focused on strategies to help her better understand and support her son's neurodevelopmental needs. The journey can be emotionally challenging for her at times, but she has found several ways to cope and stay strong. One of the most valuable strategies she’s discovered is connecting with other mothers in a local support group. She regularly attends coffee meetups and playdates, where they exchange advice and share personal experiences. These connections have been a lifeline for Nadya, offering her a sense of community and understanding as she navigates the complexities of raising a child with autism.
Throughout our work together, Nadya has also prioritized ongoing work with a counselling psychologist, which has helped her manage the emotional challenges of caregiving. We’ve worked on practical strategies, like helping her recognize the signs of stress early and guiding her on effective techniques, such as deep breathing and mindfulness, to manage those moments. Nadya has made remarkable progress in using these strategies to maintain her own well-being while supporting her son’s development.
Self-care has become a priority for Nadya, something we’ve focused on in our sessions.
She now carves out personal time every Saturday morning to recharge, whether it’s going for a walk, reading a book, or simply enjoying a quiet moment at home. These regular breaks allow her to restore her energy, so she can continue being the best advocate for her son and give him the care he needs.
We’ve also discussed the importance of celebrating her son's milestones, no matter how small. For Nadya, recognizing the progress her son is making—whether it’s achieving a new therapy goal or showing progress in communication—has become a key part of staying positive. As a family, they’ve made it a tradition to celebrate these small victories with a family dinner or outing. This practice not only strengthens their bond but also helps Nadya focus on the positive aspects of her son’s development.
Another important area of our work together has been around Nadya advocating for her own needs. She’s learned to ask for help from her spouse and extended family, ensuring she takes regular breaks from caregiving. Whether it’s a weekend away with her husband or a few hours of rest while her son is cared for by a trusted individual, these breaks help Nadya return to her caregiving role feeling rejuvenated and supported.
Lastly, Nadya has embraced the value of online autism communities. These groups have given her access to valuable resources, including information on therapy techniques and local support services. By connecting with others in similar situations, she has been able to expand her knowledge and make informed decisions regarding her son’s care.
Through our work together, Nadya has learned how to balance the demands of caregiving with the need to care for herself. Her journey is filled with challenges, but by focusing on building a strong support network, celebrating progress, and advocating for her own well-being, Nadya continues to grow as both a mother and a person. It’s been truly inspiring to witness her resilience and her dedication to both her son’s development and her own mental and emotional health.
Maria's daily life is a careful balancing act, where each decision revolves around the needs of her daughter, her own health challenges, and the financial constraints she faces. Despite these numerous hurdles, Maria has developed a range of strategies to manage her responsibilities while also prioritizing her well-being.
In our sessions, Maria has shared how she begins each day with a routine that supports her declining health. She’s made it a priority to include gentle stretching exercises and mindfulness practices, which help alleviate some of the physical discomfort caused by her chronic illness. While these moments of self-care are brief, they provide Maria with a vital respite and help her manage the physical demands of caregiving.
Given her financial limitations, Maria has become quite resourceful in managing household expenses. We’ve worked together on ways to plan nutritious meals that are also budget-friendly, utilizing economical ingredients and creative cooking techniques. Maria has also tapped into community resources and assistance programs that provide support with medical costs and some other help for her daughter. In countries where such systems are more established, parents like Maria can find some relief through these networks. In contrast, Maria’s friend, who recently moved to the Middle East, faces a different reality. As an expat, she doesn't have access to similar support systems, which makes navigating these challenges even more difficult for her.
In terms of managing her own health, Maria takes a proactive approach by prioritizing regular medical check-ups, even though financial strain can make this challenging. She’s also learned to pace herself throughout the day, breaking tasks into smaller, more manageable steps to conserve energy. When her health allows, Maria enjoys simple activities like taking short walks in a nearby park or reading books from the local library, which bring her moments of peace and joy.
To cope with the emotional toll of caregiving and the strain on her marriage, Maria has developed several coping strategies. Journaling has become an outlet for her to express her thoughts and feelings, while online support groups have provided her with a safe space to connect with others facing similar challenges. These platforms have allowed Maria to seek advice, share her concerns, and receive encouragement from individuals who truly understand her situation. She is also planning to start online counseling, which has proven to be a more affordable option compared to traditional therapy.
Despite the daily challenges she faces, Maria's resilience is evident in the moments of gratitude and connection she fosters. She cherishes the time spent with her daughter, whether it’s sharing laughter over a favorite TV show or enjoying a homemade meal together. These simple, meaningful moments strengthen Maria’s resolve and remind her of the deep love and bond she shares with her daughter.
Fatima is a mother living in a developing country, where support for children with autism is scarce, and resources are few. Every day, she faces challenges that many others would find overwhelming. The healthcare system is under-resourced, and there are no specialized services available for her child. Despite these overwhelming obstacles, Fatima is determined to give her son the best she can, driven by an unconditional love and a fierce will to advocate for him.
Life can be incredibly isolating for Fatima. In a community where autism is poorly understood, she often finds herself explaining her son’s needs over and over again, only to be met with confusion or judgment. Without the support of extended family—who are either far away or lack understanding—Fatima has learned to rely on her own resourcefulness. She carefully adapts daily routines to help her son feel secure, even if it means creating her own strategies for everything from feeding to bedtime rituals.
Her journey is tough—there are days when Fatima feels exhausted and at her breaking point. She has to make do with what little she has, stretching every dollar to meet both her son's needs and the basic expenses of life. She often has to prioritize one thing over another, sometimes letting her own health slip as she focuses all her energy on caring for her child. Fatima has learned to be
creative with what she can find—simple toys or activities that help her son engage, and meals that are nutritious but inexpensive. There are no quick fixes, and there are plenty of hard days when she questions whether she’s doing enough.
But in the face of these hardships, Fatima has found a quiet strength that carries her through. There are moments of joy, even if they’re fleeting. When her son smiles after mastering a new word or when they share a quiet moment of connection, these small victories give her hope. Fatima also finds comfort in a small online support group where she can talk to other parents going through similar struggles. It's not much, but it's something—a reminder that she’s not alone, even when the physical distance between her and others feels so vast.
Fatima’s resilience is rooted in her love for her son, but it's also shaped by the reality of her circumstances. She knows it’s not easy—nothing about her journey has been easy—but she continues because she has no other choice. Fatima doesn’t have a perfect life, and she certainly doesn’t feel happy all the time, but she has moments of peace and pride in her child’s progress, no matter how small. She laughs at the little things—like how her son hides snacks and giggles when she catches him, or how he insists on watching the same TV show for the hundredth time—but there’s also an unspoken weariness in her heart.
In working with Fatima, I’ve seen that her strength comes from her unwavering commitment to her son. What stands out to me is her persistence. Despite the immense challenges she faces, she keeps pushing forward—finding small victories and moments of connection along the way