Exploring the Lives of Mothers Raising Children with Autism Spectrum Disorder in Japan ()
1. Introduction
Autism spectrum disorder (ASD) is a brain dysfunction characterized by persistent deficits in social communication and interpersonal interaction, as well as restricted and repetitive patterns of behavior, interests, or activities [1] . Symptoms include a preference for solitary play from childhood, difficulty making eye contact, lack of interest in other people, delay and bias in verbal expression, difficulty with mutual verbal exchange, abnormal preoccupation with specific behaviors or activities, resistance to change, and obsession with specific things, which can all vary by extent [2] . In Japan, most children diagnosed with ASD at an early age are enrolled in special needs classes in elementary schools. The Ministry of Education, Culture, Sports, Science and Technology reported that 99,000 children with ASD and emotional disabilities were enrolled in special needs classes in 2019, and this number is increasing despite the declining birthrate.
The U.S. Centers for Disease Control and Prevention reported that the prevalence of ASD in eight-year-olds in the United States increased to 23.0 per 1000 in 2018, compared to 6.7 per 1000 in 2000 [3] . In general, mothers of children with ASD feel that “something is different” from the age of 1 to 2.5 years but do not recognize it as a sign of ASD [4] [5] . A definitive diagnosis takes time because it is based on the child’s detailed growth and development characteristics. Therefore, diagnoses are typically formed at around 6.5 - 7.2 years [4] [6] . Until a diagnosis is made, mothers of children with ASD raise their children with suspicions and anxieties about their disabilities [4] [7] .
As ASD children have difficulty making eye contact and sharing interests with others, their mothers experience difficulties forming a mother-child relationship; this is related to “not being recognized as a mother” and “inability to exchange words” [8] . Moreover, mothers experience panic and an abnormal preoccupation with activities, leading to difficulties with childcare (eating, dressing, using the toilet or care for excretion, etc.).
Parenting stress in mothers of children with ASD is significantly higher than those of typically developing children, children with neurodevelopmental disorders, and children with Down syndrome [9] [10] [11] [12] . The diagnostic delay in children with ASD also results in higher stress and depression levels in the mothers [13] . Previous research shows that parenting stress in these mothers is high because of behavioral characteristics related to eating and sleeping disorders in children with ASD [14] [15] [16] . Furthermore, these mothers experience stress and difficulties uniquely associated with raising children with ASD, such as the emotional experience of learning about the child’s diagnosis [17] , mothers’ conflicted feelings when the child attends school [18] , and challenges mothers face when discussing the disability with their children [19] . Psychological difficulties of mothers having children with ASD are a central theme in previous studies.
We also explored the life structure of siblings of children with ASD in previous research. Siblings experience difficulties in building relationships because it is not easy to understand the unique world of children with ASD. However, mastering a sense of “reasonable” distance allows siblings to avoid getting caught up in this unique world and build their own lives while “protecting” themselves [20] to ensure safety and security related to the presence and respect of family members. The stress experienced by mothers of children with ASD is assumed to reduce their ability to raise children. Nevertheless, it can be inferred that mothers also strive to protect themselves. Previous studies have clarified mothers’ parenting process with children having pervasive developmental disorders [21] , but no studies have explored the parenting process in mothers of children with ASD. Family goals during parenting and educational periods include providing healthy childcare for infants, assuring school attendance considering the children’s abilities and aptitudes, and maintaining family unity [22] . Examining the lives that mothers experience and build will allow us to deepen our understanding of children with ASD and their mothers and facilitate developing support methods. This will help improve mothers’ parenting abilities, strengthen family function, and improve the quality of life.
2. Methods
2.1. Research Objective
We aimed to examine the lives of mothers having children with ASD and investigate their sources of support.
2.2. Research Method
We conducted a qualitative inductive study that analyzed semi-structured interview data pertaining to the lives that mothers have created. We defined mothers as subjective beings, who, while being influenced by their surrounding environment, act according to their own will and judgment.
2.3. Recruitment and Enrollment of Study Participants
Participants included nurturing and educated mothers living with a child diagnosed with ASD. Participants should communicate linguistically in Japanese.
Participants were recruited with the cooperation of an education and support facility for children with disabilities attended by children with ASD. First, we asked for their willingness to cooperate in an interview during the preceding questionnaire survey. Then, their contact information was obtained, they were contacted, the interview survey was explained, and mothers who were willing to cooperate were enrolled.
2.4. Data Collection
We focused on the developmental status of children with ASD, the process of interaction between mothers and children with ASD, and the parent and child environment to understand the lives that mothers created. This comprised the relationship and environment between the mother and surrounding people, including the mothers’ perceptions, thoughts, and responses in this context. The interview collected data on: 1) the basic lifestyle of children with ASD, how to respond to them, and ideas and policies for responding to them; 2) the communication development status of children with ASD, how to respond to them, and ideas and policies for responding to them; 3) emotional ties with children with ASD; 4) family relationships and emotional ties; and 5) the support that mothers receive. Interviews were conducted in quiet private rooms, and care was taken to avoid visits by others. The interview was recorded with the participant’s consent; field notes taken during the interview recorded keywords spoken by the mother and their facial expressions. The data collection period was from December 2016 to October 2018.
2.5. Data Analysis
We transcribed the recorded interviews verbatim and attempted to grasp participants’ words comprehensively. We used NVivo software (Japanese version) to code for a meaningful context and develop labels that appropriately expressed the content. When we were unsure about coding and labels, we consulted the interview field notes. Open-coded subcategories (two levels) were set according to label similarity. Subsequently, we determined the relationships between subcategories and extracted categories (three levels).
The collaborating researchers had experience with research on children with developmental disorders and their mothers and pediatric nursing. All researchers confirmed the analysis content and agreed on the analysis results. Furthermore, we asked the mother of a research participant, who was also a representative of an association of parents of children with ASD, to check the analysis results. We made this request based on the judgment that, as a representative of the parents’ association, they understood the situation, possessed information on many mothers, and could offer an objective opinion. Regarding parental involvement role subcategories, they stated that there is flexibility in parent roles in each family, but they believed that the compiled results were convincing.
The research was approved by the institutional review board of the affiliated university. Prior to the interviews, we explained the objective of the research in writing and verbally and informed potential participants that their research cooperation was voluntary. They could withdraw at any stage in the research and were assured that their personal information would be protected. Participants then provided written consent to participate.
3. Results
Interviews were conducted with 11 mothers who provided consent to participate. We determined that 10 participants would be sufficient for a homogenous population; therefore, 11 participants were considered appropriate [23] . The ages of children with ASD ranged from 3 to 12 years. Table 1 shows the attributes of mothers, family context, and characteristics of the children with ASD. All interviews were conducted by the same researcher. The interview duration ranged from 28 to 73 minutes, with an average of 52 minutes.
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Table 1. Mothers’ attributes, family context, and characteristics of children with ASD.
ASD, Autism Spectrum Disorder.
We extracted 37 subcategories from 542 codes, and eight categories were derived from their relationships, which were further clustered into three themes: 1) raising children with ASD and their siblings, 2) evolving mother, and 3) using social resources. Tables 2-4 show the categories, subcategories, and examples of mothers’ narratives.
3.1. Preoccupation with Parenting Children with ASD and Their Siblings
In the following section, categories are indicated with “ ”, subcategories with < >, and codes with ‘ ’. Through comparisons with siblings and surrounding children, mothers developed concerns about the children’s developmental delays and began to
. After their children were diagnosed with ASD, mothers continued
while experiencing a
and
. Meanwhile, they could not sufficiently care for their other children, which they indicated in comments such as ‘I am so busy with my older child that I have no time to take care of their brother who is 4 years younger than them’ and
, wondering whether they are burdening the siblings. The mothers considered growth and schooling of the children with ASD, impacts on siblings, and their future lifestyles. Consequently, they parented using trial and error, relying on the aspects they valued in their current lifestyles. The categories and definitions are given below.
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Table 2. Preoccupation with parenting children with ASD and their siblings.
Letters in parentheses indicate narratives of the study participant. ASD, Autism Spectrum Disorder.
Letters in parentheses indicate narratives of the study participant. ASD, Autism Spectrum Disorder.
Letters in parentheses indicate narratives of the study participant.
1) “Assessing the characteristics, growth, and changes in the child with ASD” refers to the content captured by the mothers’ perception of the extent of development in children with ASD and changes in language and reactions obtained through observing them and comparing them with other children. This becomes possible through the mother understanding the characteristics and changes in children with ASD.
2) “Preoccupation with parenting children with ASD” refers to mothers’ involvement with children with ASD, as well as their daily parenting efforts and thoughts regarding those efforts. Given the narratives on trial and error and desperation, this was described as a preoccupation.
3) “Consideration toward the child’s siblings” refers to mothers’ perception and involvement with siblings of children with ASD, the impact on the siblings due to greater attention toward the child with ASD, and the siblings’ response.
4) “Thinking about the future of the child with ASD” refers to the mothers’ thoughts and ideas about the growth and future life of their children with ASD.
5) “Having goals and plans for parenting” refers to the methods and ideas that mothers consider important in the process of parenting children with ASD.
3.2. Evolving Mother
The mothers experienced
as they were
on thoughts of parenting and because their husbands or surrounding people lacked an understanding of ASD. Mothers also consulted with and received support from their husbands and surrounding people, such as their parents, when there were
or when there were issues relating to parenting. The mothers were aware of their own changes (evolution), as the psychological distance from their children gave them the opportunity to develop a new perspective on their children's existence; moreover, their relationships with the people around them changed the way they perceived and contemplated about life. Mothers were also aware of their own changes in how they saw and thought about things. The categories and definitions are given below.
1) “Changes in perspective or approach” refers to mothers looking back on themselves and considering changes in the way they perceive things, their own ways of thinking, and the way they think about the existence of their children while facing the pain of living and surrounding people’s awareness of the disability during the parenting process.
2) “Receiving help from people around them” refers to the responses of surrounding people and the mother’s perception of these responses when problems occur during parenting, such as issues that parents cannot resolve alone or when events occur that require consultations.
3.3. Using Social Resources
Mothers used social resources that they considered appropriate in parenting children with ASD, such as attending support facilities and daycares. Mothers sent their children to “daycare” and “education and support facilities for children with disabilities”. Mothers used social resources such as “learning about education and support for children with disabilities” provided by rehabilitation facilities and private organizations. Some mothers were confused about “education and support” when their children’s attendance at education and support facilities was terminated due to their children’s age.
“Use of social resources” refers to the measures mothers took to promote their children’s development and measures taken against various social resources (environments).
4. Discussion
4.1. Preoccupation with Parenting Children with ASD and Their Siblings
In this section, alphabetical letters in parentheses refer to participants. The mothers lived their lives “assessing the characteristics, growth, and changes in the child with ASD”. The mothers understood the growth of their children with ASD by recognizing delays in speech and intense obsessions compared with other children. Although the children faced difficulties with other children, it became easier for mothers to play with them (b). From infancy, children with ASD typically avoid eye contact and do not share interests with others. They also have language delays, although the extent of the delay is variable [2] . Mothers’ understanding of their children’s characteristics facilitates understanding them. Capturing children’s changes and growth based on this understanding is assumed to bring the mothers joy. However, until this understanding is formed, mothers would be
of their children by comparing them with other children (j). Japan’s health examination system for infants examines children at one year and six months and at three years. Even when developmental delays are indicated in these health examinations, the diagnostic age can range from 2 to 8 years [24] because it takes time to identify the characteristics and make a diagnosis. Consequently, mothers experience a “preoccupation with parenting the children with ASD” while
.
When children received an ASD diagnosis, mothers developed a deeper understanding of ASD and attended medical and nursing institutions to learn about and practice treatment methods. However, as symptom severity varies and is highly individualized, mothers began
and viewed the children’s independence as their responsibility (e), resulting in them
. The situation where the mother is at the center of parenting results in
. Additionally, predicting the development and future of children with ASD is difficult for mothers
and having no time to spare. Therefore, they begin to
, the issues regarding school attendance that they will face, such as “whether to put them in a special needs class or a regular class”, the extent of support they can receive, and whether their children will receive such support. Anxiety surrounding not knowing how children are doing, given their speech delay and poor expressiveness (d), leads to worry and stress regarding school life in mothers of children with pervasive developmental disorders [25] .
These worries lead to mental and physical exhaustion [17] associated with difficulties in dealing with the characteristics of developmental disorders. This, in turn, makes it difficult for mothers to establish a good relationship with their children. Itai reported that mothers of children with disabilities have closer psychological distance with their child than those of healthy children [26] . It is considered that this kind of relationship formation influences the close psychological distance between mothers and children with ASD. However, there is a risk that these mothers will become psychologically involved in the situation. This differs from their sense of “reasonable” distance with their child’s siblings [20] . Not getting caught up in the situation assures objectivity toward the relationship, which leads to the “protection” of the mother, and will allow an objective understanding of the child’s situation. Mothers who maintain psychological distance and have sufficient mental bandwidth to prioritize themselves occasionally have an appropriate relationship with their child. Therefore, it is necessary for surrounding people to take interest in the distance between the mother and child and provide support so that the mother can become aware of the distance or lack thereof. Ensuring objectivity and understanding the child’s growth and changes facilitates “having goals and plans for parenting”. Hence, an appropriate psychological distance between the child and mother is important.
Mothers recognized the burden on the siblings of children with ASD, such as not being able to care for them sufficiently (e) and making them endure the difficulties (b). Mothers also felt that
and were considerate toward them. In previous research, we clarified that siblings of children with ASD were considerate toward their parents [20] . This was influenced by siblings’ awareness of mothers’ fatigue in caring for children with ASD. Both mothers and siblings bear the burden of caring for children with ASD. Emotional ties are strengthened by being considerate toward one another, but there were concerns that such consideration may collapse, depending on the extent of caregiving.
4.2. Evolving Mother
The mothers’ perceptions changed by the values of surrounding people and their understanding of disabilities, their personal questions toward those values and understanding, and the support of surrounding people.
Mothers who played a central role in parenting the children were driven into a situation where they were
and even
. Nagata and Sano found that mothers of children with ASD were highly depressed, and their perceptions of their competence as parents affected the intensity of their stress [27] . It is considered that
despite desperate efforts affects parents’ perceptions of competence and leads to feelings of depression. Furthermore, the diagnosis of the child’s disability may lead to a sense of hopelessness regarding the child’s future (g) and reduce the mother’s ability to regulate her emotions. This may stem from the following: a perception that it is important for children to be normal (h), situations where they are expected to do things together with others (g), and a lack of understanding of the disability in surrounding people. A lack of understanding of children’s disabilities among their closest relatives, such as husbands and the mothers’ parents, also contributes to negative thinking.
Self-monitoring is essential for correcting self-perception [28] , and cognitive monitoring plays an important role in leading an adaptive lifestyle [29] . Having the children attend daycare can help mothers maintain a physical and psychological distance from them.
and
allowed mothers to monitor (inspect/evaluate) their relationship with their children, allowing them to correct their perceptions, such as perceiving that
, and change their perspectives and ways of thinking. Furthermore, changes in perception are affected by the environment surrounding the mother, such as
and
. Expanding children’s range of activities allows mothers to recognize that there are limits to what can be done at home. This allows them to grasp the situation objectively by recognizing
, and
is an opportunity to receive support and change the situation.
4.3. Using Social Resources
Mothers used social resources such as support facilities, hospitals, and daycares for parenting their children with ASD. Crucially, early and appropriate diagnosis is important because it leads to early initiation of treatment. Mothers also used private organizations and support facilities to learn about parenting methods and have consultations. However, mothers also had
. Some mothers were also at a loss because of the reduced number of visits to support facilities or interruptions in the use of such facilities resulting from sending their children to school (h). Matsuoka
et al. stated that mothers of children with pervasive developmental disorders desired support that focused on children’s strengths and growth. Attending support facilities supports children’s growth and facilitates the mothers’ psychological stability by providing venues for consultation [25] . The Act on Support for Persons with Developmental Disabilities came into effect 17 years ago. Although there have been improvements in support measures, many private support facilities continue to emerge, and these measures remain insufficient. Appropriate use of social resources requires mothers to obtain and consider information on such resources. Therefore, it is necessary to provide adequate information that corresponds to children’s disability characteristics and individuality and supports the mothers’ and families’ decision-making.
As this study targeted mothers living in the same area in Japan, regional circumstances regarding the social welfare system may have influenced the results. Furthermore, we did not investigate the extent of the abilities and characteristics of children with ASD or their impact on the mothers’ lives. This is a potential topic for future research.
5. Conclusion
The lives of mothers parenting children with ASD are built around three themes: 1) preoccupation with parenting children with ASD and their siblings, 2) evolving mother, and 3) use of social resources. When children are diagnosed with ASD, mothers learn about ASD to support their children adequately with treatment. However, as the children have various individual characteristics, parents end up
and
. The situation of desperately struggling with and becoming preoccupied with parenting is related to a close psychological distance from the children and becomes a burden in life. Through this process, mothers develop their own policies regarding parenting and experience changes in their personal views and ways of thinking. For mothers to change their views and ways of thinking without increasing the burdens on their lives, they need the support of people around them to help them objectively view parenting and monitor their perceptions. Furthermore, for mothers to use social resources in parenting, the supporting individuals must understand the characteristics of children with ASD, provide appropriate information, and assist in decision-making.