Qualitative Social Work

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Walk a mile in my shoes: Life as a mother of a child with Asperger's Syndrome Jessica Gill and Pranee Liamputtong Qualitative Social Work 2013 12: 41 originally published online 21 September 2011 DOI: 10.1177/1473325011415565 The online version of this article can be found at: http://qsw.sagepub.com/content/12/1/41

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Article

Walk a mile in my shoes: Life as a mother of a child with Asperger’s Syndrome

Qualitative Social Work 12(1) 41–56 ! The Author(s) 2011 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1473325011415565 qsw.sagepub.com

Jessica Gill and Pranee Liamputtong La Trobe University, Victoria, Australia

Abstract In this study, we explore the experiences of mothers with children who have Asperger’s Syndrome. A qualitative inquiry was adopted in our study. Fifteen women participated in in-depth interviews, six of whom produced a solicited diary that offered a more in-depth insight into their lives. Thematic analysis was used to examine themes from the transcripts and diary entries. A number of themes emerged from the interview and diary data. First, the women articulated their perceptions of motherhood which included perceptions of an ideal mother, the mother role, the physical and emotional health of mothers and the mask of motherhood. Second, the data revealed the moral career of motherhood which discussed mother blame as a main issue. The findings of this study have implications for health and social care provided to women who are mothers of children with Asperger’s Syndrome. Keywords Asperger’s Syndrome, Australia women, moral career of motherhood, motherhood, paradox of motherhood, qualitative research

Introduction This study adds to professional knowledge about mothers of children with Asperger’s Syndrome (AS). Commonly, autistic children appear to be physically normal, yet suffer from a disability that is extremely pervasive (Gray, 2003). The normal physical appearance of the autistic child and the relative lack of knowledge about the disorder in communities mean that the parents of an autistic child may experience hostile public reaction to their child’s inappropriate behaviour. Research studies have compared parents of autistic children with those parents who have children with other mental disorders such as Down’s syndrome, mental retardation and cystic fibrosis (Bouma and Schweitzer, 1990; Sanders and Corresponding author: Pranee Liamputtong, School of Public Health, La Trobe University, Bundoora, Victoria, 3086 Australia. Email: [email protected]

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Morgan, 1997). These studies have suggested that parents with an autistic child are more anxious, depressed and more stigmatized by the community (Olsson and Hwang, 2001). This is due to the autistic child’s ‘normal’ physical appearance, the difficult behaviour of the child in combination with restriction to personal life (Olsson and Hwang, 2001) and the general community awareness of the other mental disabilities. However, in the case of AS, the nature of the disability is far less evident than classic autism. As such, when a child with AS acts in a socially inappropriate manner or misbehaves in public, others are more likely to react in a negative fashion than they would if a child with lower functioning autism acts inappropriately. This suggests that parents with AS children are more likely to be stressed and depressed in comparison to parents with low functioning autistic children (Gray, 2002). The reasons for this are that higher-functioning autistic children are expected to engage in social activities, sports and mainstream school and are therefore more prone to being stigmatized by other children, parents and teachers. The parents of children with AS are constantly battling with the school system to ensure their children are receiving the best education, without disadvantaging other students (Pyles, 2002). These parents have also expressed that they have felt stigmatized by the school and other parents because of their disabled child (Gray, 2002). Different ways that parents have dealt with the diagnostic process have been examined in many studies and self-help books on Autism Spectrum Disorder. In Taiwan, according to Lin et al. (2008: 2734), parents are not willing to have their children examined if they present with developmental delay, claiming that once their children talk they will progress further than their peers because ‘great minds mature slowly’. These parents will only seek medical advice if these developmental delays become severe. Even when their children are confirmed to be autistic, many of these parents will deny that their children have autism. This denial stems from the belief held by society and other family members that the parents are responsible for their children’s autism. Shuntermann (2002) also found that parents find the diagnosis phase a difficult one, as they begin to blame themselves for the diagnosis and they also find that other family members and society in general blame them for their children’s disability. Additionally, Siegel (2007) showed that parents view the diagnosis phase in a negative fashion, as they feel a deep sense of loss that has been compared to what one experiences when a child dies. However, Lasser and Corley (2008) found that most of their participants felt relieved when their children were diagnosed, as it validated their concerns about their children’s development and provided them with a word for what they had observed in their children. This then allowed them to seek adequate and relevant treatment for their children’s condition. Some parents commented that after not receiving an adequate diagnosis for some years, they ‘begin to question [their] parenting skills’ (p. 373). Shuntermann (2002) and Siegel (2007) showed that some parents view the diagnosis of their child in a negative way. Feelings of loss, denial and self blame are common. In this article, we discuss the lived experiences of mothers of children living with AS, in particular, their perceptions of motherhood and emotional and

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physical health. First, it examines the meaning of motherhood among mothers of children with AS, in particular, their perceptions of ‘ideal motherhood’. Second, it explores how these mothers perceive themselves as mothers. Last, it examines the experiences and feelings of these mothers of children with AS, for example, their physical and emotional health issues. Other aspects of the research have been presented elsewhere.

Conceptual frameworks We situate our study on two conceptual frameworks.

The paradox of motherhood Motherhood has the capacity to be ‘morally uplifting’, rewarding and fulfilling, and provides women with a sense of meaning in their lives (Arendell, 2000; Lupton, 2000; Rich, 1992). Paradoxically, it can be physically and emotionally demanding for women and can lead to a loss and restriction of personal identity (Arendell, 2000). According to Arendell (2000), Rich (1992) and Ross (1995), becoming a mother is a very powerful and emotional experience, but it also brings about feelings of anger, frustration and resentment in women’s lives. These feelings would be felt on a larger scale for women with a disabled child, due to the loss of their personal lives because of their children’s behaviour in public settings (Tunali and Power, 2002). The lifestyle changes a mother needs to make in order to look after a disabled child are many. These include leaving her job to be a stay-at-home mother (Gray, 2006; Ryan and Cole, 2009), the anger and frustration felt towards her child when she is unable to communicate or understand her child’s needs, behaviour or characteristics (Woodgate et al., 2008), and the frustration when she deals with community members, schools and other parents when her child is seen to be stigmatized within these social settings (Gray, 1993, 2002, 2003). Read (2000) contends that mothers are usually the ones who have to deal with these emotional issues and therefore, it can dampen their emotional health over time. However, due to society’s expectations that mothers should feel happy and proud when they take on the role of motherhood, it is often difficult for these women to express negative feelings for fear that they may be seen as unfit for, or deviant against the norms of motherhood. With a few exceptions (Arendell, 2000; Hays, 1996; Lupton, 2000; McMahon, 1995), the paradoxical nature of motherhood has not received much attention in the literature, due to the reluctance of women to express feelings of anger and frustration towards their children and their roles as mothers. This, therefore, leads to women masking their emotions and fears. This was described by Maushart (1997: 21) as the ‘mask of motherhood’. This mask of motherhood ‘disguise(s) the chaos and complexity’ of women’s experiences as mothers and it is this mask that ‘keeps women silent’ about their lived experiences of motherhood.

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However, past research pertaining to the health of parents with disabled children found that mothers of disabled children have depression scores that are much higher than their partners as well as in comparison to other mothers with nondisabled children (Gray, 2006; Olsson and Hwang, 2001; Tsai et al., 2008). Therefore, part of this study explored whether the mother’s emotional and physical health is compromised by not only having a child(ren) but also having a disabled child(ren). Participants might be reluctant to share their feelings of resentment, anger and frustration towards their children and their mother role, as described above. However, others might be willing to share their stories and feelings to express to the wider community the strains of rearing a disabled child, particularly one that does not display the ‘physical abnormalities’ of other disabled children. Explaining their experiences and health concerns may lead to further understanding of AS and the many struggles, associated with the disorder, for the family.

Motherhood as a ‘moral career’ Within the paradox of motherhood, the moral career of motherhood becomes transparent. Goffman’s (1963) conceptual framework of a ‘moral career’ suggests that a person begins to socialize into a specific role when society has labelled him as such. This theory can be explained as having two sides, which link internal matters such as the image of self and self-identity with broader structures such as society. Goffman’s notion of career enables an individual to ‘move back and forth’ between the self and its significant aspects of society; that is, moving from how she perceives herself to how others perceive her. This involves the important process of the ‘labelled’ developing an identity from interacting with others. In this sense, women may develop self-identity as mothers and be labelled as a good or bad mother as they interact with others around them (Arendell, 2000; Barnard and Martell, 1995). In this sense, motherhood is socially constructed (Arendell, 2000). McMahon (1995) argues that when individuals start different social relationships, pertinent identities must be formed. The social relationship of mothering a child, for example, is interpreted by society as how women care for their children; this is the social identity of motherhood. Therefore, if a woman does not meet this ‘social identity of motherhood’, they have the potential to be labelled as a bad mother. Goffman (1963) points to ‘identity ambivalence’ of an individual in the society. Accordingly, individuals who fail to uphold their ‘moral career’ will eventually have some mixed feelings about themselves. If women who become mothers feel that they cannot perform motherhood roles according to society’s expectations, they inevitably feel ambivalent about their motherhood careers and self identities as mothers. This is the beginning of mothers socializing into the role they have been labelled as. Although they do not view themselves as bad mothers, society continues to label them. As such, they begin to fall into that social role. Mothers of children with AS are more at risk of being labelled by society as a bad mother, as they do not fit in with the societal expectations of how a mother

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should act. For example, when her child acts inappropriately in public and she is unable to control that child, the mother looks as though she is not able to fulfil her role as a mother. The general societal perception is that if she were a ‘good mother’, she would not allow such behaviour to occur in public, or if it did occur, she would have control over her child and be able to stop such behaviour. Furthermore, society generally believes that mothers with disabled children must have made poor choices, and therefore, they are to blame for their children’s abnormalities (Kingston, 2007; Shuntermann, 2002). For example, they may have used drugs whilst pregnant. Mothers then feel the need to explain themselves to society, apologizing for the children’s behaviour. This feeling of guilt is the product of the social construction of motherhood; mothers blame themselves and feel guilty because they do not live up to what society expects a ‘good mother’ to be (Kingston, 2007). Goffman’s framework suggests that people start to socialize into the roles with which society labels them. Therefore, due to their children’s public behaviour, if society views these mothers as bad mothers, these mothers will start to believe that they are bad mothers. Our study employed this framework to ascertain whether participants blame themselves for their children’s behaviour, just as society blames them, and whether these feelings of self-blame lead mothers to see themselves as ‘bad mothers’. We also asked the women about their image of ideal motherhood. Lupton (2000) describes in her study that many women will continue to encounter difficulty in achieving their ideal image of ‘good motherhood’. Mothers of both autistic and non autistic children in Tunali and Power’s study (2005) said they placed more emphasis on being a ‘good mother’ and less emphasis on career and other careeradvancement activities. Our study aimed to ascertain how these women view themselves as a mother, and what they regard as important aspects of being a good mother.

Methodology The study on which this article is based adopted qualitative research approach. Qualitative inquiry offers an insight into how individuals make sense of their experiences (Padgett, 2008). As this study aims to delve into the experiences of mothers with AS children, qualitative research was used in order to develop an understanding of these mothers. We based our study on the feminist methodological framework. This framework advocates the value of examining the experiences of the people in a study. It also acknowledges the need to allow people to ‘speak out’ about their experiences from their own perspective (Grbich, 2007). Hence, this study employed an in-depth interviewing method; a method that is commonly used in research based on feminist framework (Hesse-Biber and Leavy, 2010; Oakley, 1981), to collect data. Feminist methodology tends to embrace more innovative ways of data collection (Grbich, 2007). This encourages the use of more innovative methods such as the

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solicited diary method. This method allows participants to express themselves and share their stories and is particularly useful for researching sensitive topics (e.g. AS) and vulnerable people (e.g. mothers of a child with AS). Thus, the solicited diary method was of particular relevance to our research and provided a valuable adjunct to the in-depth interviews. By using both methods, the results became a rich source of information on the particular health topic (Jokinen, 2004). The diary method has been used in different studies but none has been adopted in a study of the mothering experience of mothers with an AS child. In this study, one interview was conducted and a solicited diary was used to collect the necessary data with each participant. Questions which were discussed during the interview were planned prior to conducting the interview. The questions allowed dialogue to be relatively free flowing, and gave participants the freedom to express what they wished, and elaborate on certain areas they saw as relevant to their lived experiences. Specifically, for the results we present in this article, the following main questions were used to elicit information from the participants: . What is your view of an ‘ideal’ mother? . How do you perceive yourself as a mother? . Can you tell us about any social situation you have been in, where you have felt embarrassed/anxious about your child’s behaviour? . How would you rate your physical/emotional health, does this change day to day, what sort of things make you feel tired? How do you re-energize, take time out for yourself? . Are there any other things you would like to tell us about your experiences with having an Asperger child? Participants were then asked to fill in the solicited diary of their day-to-day personal experience over a one-week period. However, this aspect of the study was optional and only six women selected to keep a diary for us. Women were given the following instructions for their diary. Please fill out this diary over a one-week period, reporting on your personal experiences. For example, a time when you felt in control of a situation or a time you felt out of control, how did this make you feel as a parent/as a person? How do you feel at the end of each day, physically and emotionally? What were the things which occurred throughout the day that cause a change in your emotional or physical state? At the end of the week, please indicate how this reflective diary exercise made you feel. Did you feel like it was a positive experience to reflect upon your role as a mother? Or was it a negative/upsetting experience? Did you reveal things to yourself that you do not often think about for example: your emotional state?

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We recruited women aged between 30–55 years, who have a child or children with AS. Therefore, the sampling for this study was purposeful, as it aimed to include people who have lived experiences relevant to the research questions (Patton, 2002). The triangulation sampling method, which combined newsletter advertisement, personal networks and snowball sampling, was used to recruit the 15 participants in this study. We stopped recruiting the participants when our data started to repeat itself and this is referred to as data saturation (Padgett, 2008). All participants agreed to participate and signed a consent form prior to the interview. The socio-demographic characteristics of these women are presented in Table 1. All interviews were taped and transcribed verbatim. Thematic analysis was used to analyse the data from this study. This method of data analysis aims to identify, analyse and report patterns or ‘themes’ within the data (Braun and Clark, 2006). Initially, we performed open coding where codes were first developed and named. Then, axial coding was applied to develop the final themes within the data. This was done by putting the codes which were broken down during open coding back together in new ways by making connections between a category and its subcategories. This resulted in themes and they were used to explain the felt experiences of the participants. The diary entries produced by the participants were coded to find themes similar to that of the interview data. Pseudonyms were used in referring to the participants in the findings section. The study was approved by the Faculty of Health Sciences Ethics Committee.

Results Several themes emerged from the data and they are presented in the following subsections.

Perceptions of motherhood and mothering role When discussing the idea of motherhood, many participants acknowledged that there is no ideal or a perfect image of motherhood. However, they identified certain characteristics that they viewed as ‘ideal’, and which a mother should possess. These were unconditional love, educating children, a caring sensitive nature, a calm individual who is a listener and an advisor. Kate spoke about an ideal mother as one who supports her children’s decisions and successes, as well as sets them up to be independent. No matter what the level the child is capable of and no matter what they want to do that needs to be ok, and they need to know that that is ok . . .. also she can teach her children not only academically but domestically so they can look after themselves and be their own person.

When asked about her views of ideal motherhood and her perceptions of her own motherhood, Victoria passionately expressed her feelings on ‘ideal’ mother

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Table 1. Socio-demographic characteristics of the participants Demography

Number

Age 41–50 50+ Religion None Christian/Catholic Greek Orthodox Jewish Anglican Marital Status Married Single Mother Educational Level Tertiary Occupation Stay at home mother Child Care Teacher (Primary, Secondary, Tertiary) Office Work Health Professional Self Employed Number of children 0–1. 2–3. 4–6. Family members in the household Spouse and Children Children only Household Income (AUD$) 60,000

9 3 4 7 1 1 2 13 2 15 4 2 3 3 2 1 1 12 2 13 2 3 1 11

role and how societal expectations on mothers can ‘set these women up’ to make them feel as though they are not doing enough for their families. Women were also asked about how they viewed themselves as mothers; most women expressed feelings of inadequacy and felt as though they had failed as

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mothers at times, some more so than others. Some mothers expressed that although they tried their best, sometimes they felt as though they were too strict on their children, or that they were too involved. They felt like they should be doing more for their AS children. These feelings were often due to these mothers comparing themselves with other mothers. Although these mothers were aware there was no ideal of good motherhood, they still placed high expectations on themselves. In her diary, Julia wrote: ‘I continuously have in my mind thoughts that maybe I should be doing more’. However, Julia also expressed in her interview that she was aware that there was no such thing as an ideal mother. Although mothers felt inadequate at times, they discussed the good relationship they had with their children, and the positive characteristics they possessed, such as being their children’s advocate. You’ve just got to love them, and try to have a relationship with him now, so when he becomes an adolescent and you’ve got all the hormones and he has all the temptations out there in a world that he doesn’t understand, he is going to have me to come back to as his safe place and he knows that I love him and I will look after him. But I am very protective, like a meerkat, I want to save him from things, but that can be detrimental too, so I have to stand back sometimes and let him do more. (Laura)

However, when discussing ideal motherhood and their perceptions of themselves as mothers, most mothers discussed what they felt they failed at, or the times they felt inadequate. Despite knowing that there was no ideal motherhood, they were aware that society still placed great expectations on them and there was a real need for them to meet these expectations. Many participants found that once they became mothers, they needed to make many sacrifices such as giving up their current employment or having less time for themselves. Mothers would often feel very guilty if they chose to work instead of spending time to fulfil their mothering role. Others would feel guilty if they had time for themselves, to spend on leisure activities. Giving up employment or cutting down work hours was a common theme amongst the participants. Therefore, these mothers had to make sacrifices and felt that it was their ‘duty’ to be at home to nurture their children.

The physical and emotional health of mothers The women, in their mothering role, chose to put their families before themselves therefore leading to negative health outcomes. Most mothers expressed feelings of extreme tiredness at the end of each day. Many also noted that although they were very tired, they had difficulty sleeping at night, because they were constantly worrying about their children. Emotionally, these women had their ‘ups and downs’ which were dependent on the mood of their AS child. Julia clearly indicated that: ‘If he has a bad day, I have a worse day’. Due to the 24-hour care involved, most mothers said that nurturing an AS child was highly stressful. This constant stress

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made Louise forget things easily; she described this as ‘absent-mindedness’. In her diary, Louise wrote: I forget appointments or get the day/time mixed up, I never used to be like this! It must be the stress . . . It never stops.

One participant wrote in her diary that she expressed feelings of frustration when her son expected her full attention all the time, annoyance that her child did not do what ‘normal’ teenagers do, anger about her son’s grooming standards in public, and confusion about her child’s behaviour at times. Another mother expressed in her diary feelings of sadness when her son could not join in on dress-up day like the other school children. And another mother indicated in her diary that she felt very proud as a mother when her child behaved in an appropriate manner, but felt very out of control and anxious when he was not behaving appropriately. Most of these women indicated that due to their busy lifestyle as a mother they would rarely have time for themselves, to participate in activities that would better enhance their health. These mothers would often ignore their health needs by putting the needs of their families first. However, some participants indicated that once their children began primary education, they had more time for themselves. They would participate in activities to improve their health and overall wellbeing. These activities include holistic therapies and cardiovascular fitness training, which was said to reduce stress in some participants, and dancing, which some participants indicated would distract them from their day to day issues. Some mothers acknowledged the need to look after themselves. However, although they were aware of the consequences of not nurturing their own health needs, they continued to put their families first. They were aware that if they continued to neglect their health and well-being, they would not be able to fulfil their motherhood and mothering role. Therefore, the notion of ‘getting a balance’ was described in many interviews, where mothers would insist on not only looking after their families but also putting time into looking after themselves. Kate noted: If the mum isn’t physically, emotionally and mentally able then aspsy’s [Asperger’s] and any child for that matter will suffer. So I have to look after myself and I can see signs when I’m not coping, when I need to sit down, or go and have a big cry, go for a run, do something to relieve that, have a good laugh. Yeh just try to keep a balance, and that’s really hard.

Often, however, because they were so fixated on their children and their role as mothers, they chose to put their families before themselves. Laura spoke of the difficulties with gaining that balance: If you don’t look after yourself you suffer greatly, more tired, sick more often, mentally low, but I just need to motivate myself to get out there and do something

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for myself. You have to be kind to yourself, I know this but you just don’t do it half the time.

The mask of motherhood When the participants were asked whether they expressed feelings of stress, anger, frustration or fatigue to their spouse, friends or other community members, many indicated that they had to put on a mask when in public and with friends, so they could show these people that they were coping in their mother role. They also chose to put on a mask because some of the feelings they would be revealing, such as wanting a ‘normal’ child, may not be understood or accepted by the community. Therefore, these mothers chose to put on a mask, or persona that would place them as fitting into societal norms of motherhood. Laura suggested that: You put your mask on when you go out, you put on the persona that is acceptable and expected, but when you close the doors everyone has their dark times and when the door is closed I would not like to have one of those reality cameras in my home because I really can be quite, I get very down, I get depressed, I get angry.

Women also spoke about the fear of ‘draining friends’ with all the problems they had. It was often easier to say they were fine and coping. It was only in extreme cases that some participants tell friends about these emotions. Audrey wrote in her diary that she could not tell her friends because she perceived them as not being understanding or accepting of her child’s diagnosis: ‘I can’t tell my friends. They won’t believe the friendly and engaging boy they know has AS . . .’. But more often than not, for emotional support, the participants would confide in their spouses or other mothers with AS children, those whom they perceived would understand them and their issues. However, after years of wearing the mask, some mothers realized that they were not being true to themselves or to their children. Hence, they chose to reveal more emotions and discuss their personal struggles with others.

Mother blame and moral career of motherhood Women spoke about a moral career in terms of mother blame. Prior to having their children diagnosed with AS, many participants noted that society would blame them for their children’s inappropriate social behaviour. Their ‘parenting practices’ were seen to make their children behave inappropriately. This in turn would lead to mothers blaming themselves for their children’s behaviour, and at times they felt like they were out of control and were ‘bad mothers’. Justine spoke about feeling as though she was to blame for her child’s issues: ‘Then I thought that must be true, it’s obviously true’. Ironically, some health professionals also blamed these mothers, saying that it was their issues that were causing their children’s unusual behaviour.

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However, once a diagnosis was obtained, other people in the society began to see that it was a behavioural issue with the child and that it was not the parenting practices. This acknowledgment and acceptance allowed these mothers to stop blaming themselves. However, gaining a diagnosis, although a relief, was also frustrating for some mothers as they wished they had known earlier. Audrey wrote in her diary that after realizing her husband may also have Asperger traits: This would explain years of unexplained pain and misunderstanding in our marriage . . . then I had a difficult child and was perceived as a bad mother. IF ONLY I HAD KNOWN ALL ALONG THAT I WAS NOT THE CAUSE OF ALL THIS!

It should be noted that mothers who have older children who do not have AS did not feel like they were parenting badly, because they had already produced well-adjusted ‘normal’ children. It was easier for them to recognize that there was something wrong or different about the AS child, rather than their inability to parent or control their child. Also, we observe that the first-time mothers, due to their lack of experience and knowledge, began comparing their child with other children to look at their own parenting skills. They felt that they were doing something wrong. Therefore, these mothers were more likely to believe that they were ‘bad mothers’, as labelled by other community members.

Discussion and conclusion According to McMahon (1995) and Lupton (2000), many women will continue to encounter hardships in achieving their ideal image of ‘good motherhood’. This is true for mothers in our study as the women were able to describe their ‘ideal’ image of motherhood yet acknowledge there was no such thing. However, they continued to strive to achieve this image, meanwhile feeling inadequate, at times feeling as though they were failing in their mother roles. As Kingston (2007) has found, these feelings of inadequacy were often due to these mothers comparing themselves with other mothers. However, some mothers were able to describe positive attributes that they felt they possess as mothers. Read (2000) notes that it is the mothers of disabled children who are generally the ones who have to deal with stigma in the community, who are frustrated because they cannot communicate with their children and who have to make the most sacrifices when they become mothers, such as giving up their jobs and social lives. This is all part of them being the primary caregivers to their disabled children. These feelings can lead to a mother’s emotional health being dampened over time. Gray (2003), Olsson and Hwang (2001), Tsai et al. (2008), and Tunali and Power (2002) also suggest in their studies that mothers with autistic or AS children have poorer emotional health outcomes than other mothers with non-disabled children or their male partners. We also found that most mothers described their emotional health as being affected by the high demands of having an AS child.

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Furthermore, a mother’s physical health was greatly affected by the high demands of having an AS child. This constant physical wearing was described by many participants and is consistent with the findings of Pakenham et al. (2005) and Allik et al. (2006) that mothers with autistic children had poorer physical health and quality of life than fathers. This was again due to the primary caregiver role that mothers in past researches and the present study take on. However, participants in our study noted that once their children started attending primary school, they were able to have more time for themselves, but this was not supported in previous researches. The notion of ‘getting a balance’ was described by the participants in Woodgate et al.’s study (2008), where it was noted that gaining a balance between looking after a child with autism and looking after oneself and the rest of one’s family was paramount. This too was discussed in our study and deemed as a very important part of maintaining the health of the family and of the women themselves. However, the participants in our study also discussed the difficulties in gaining that balance. The mothers expressed that in their mother role, they would always put the needs of their families before their own, despite knowing the importance of maintaining a healthy life. As noted, when entering the mother role, many women must make sacrifices, particularly those with a disabled child, and the feelings that come with making these sacrifices could be feelings of resentment, anger or frustration. However, Kingston (2007) suggests that mothers are often reluctant to share these feelings with the outside world, for fear that they would be seen as being deviant towards their mother roles. Therefore, they choose to mask these feelings, as described by Maushart (1997) as ‘the mask of motherhood’. This was found to be significant in the present study, as many participants described that they would put up a mask in the public eye, so as to project an acceptable mother image. The participants in our study also expressed fears of ‘draining their friends’; hence they chose to mask their feelings. However, most participants in our study did confide in their spouses or in a support group setting, noting the importance of these support networks as coping strategies for themselves. Furthermore, we found that some women expressed that over time they had learnt that they were not setting a good example for their children if they continued to hide behind a mask. Therefore, they began to be more truthful with themselves and others. This theme has not yet been highlighted in research. Following the moral career of motherhood (Goffman, 1963), the women in our study spoke about moral career in terms of mother blame (Kingston, 2007; McMahon, 1995; Shuntermann, 2002). Prior to having their children diagnosed with AS, many participants noted that society would blame them for their children’s inappropriate social behaviour. Their ‘parenting practices’ were perceived to have caused the children to behave inappropriately. These results are consistent with those found in the study of Lasser and Corley (2008), where parents commented that after not receiving an adequate diagnosis for some years, ‘you begin to question your parenting skills’. However, in our study, some mothers commented

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that if they had already had children who were ‘normal’ and well adjusted, they were less likely to blame themselves compared to mothers with no other children before the time of diagnosis. The past experiences of these mothers allow them to make sense of their current situation better than those mothers who have only children with AS. Once families in this study obtained a diagnosis, they felt a great sense of relief as it validated their concerns about their children. It allowed these families to explain to the community that it is a behavioural issue with the children and not poor parenting practices. This was also found in Lin et al. (2008) and Lasser and Corley (2008). However, after receiving a diagnosis, no mother in our study felt a deep sense of loss, as if their child had died. Furthermore, no mother denied that their child had AS. Some mothers down played it more than others, but all acknowledged and accepted that this was a lifelong disorder that their child would have. These findings were in contrast to those of Shuntermann (2002) and Lin et al. (2008), whose participants believed the child was just going through a stage. However, Shuntermann found that parents believed the diagnosis phase was a difficult one, as they began to blame themselves for the diagnosis. Shuntermann’s participants also believed that other family members and society in general would blame them for their children’s disability. The results of our study are similar to Shuntermann’s findings. However, Shuntermann’s participants noted that they were blamed for their children having autism, whereas the participants in our study noted that they were blamed for their inability to parent their children appropriately. This highlights that society did not see a child with AS as being disabled; all they could see was a parent not being able to control their ‘naughty child’. The community would blame these mothers for their child’s inappropriate behaviour. This blame made the mothers feel out of control, like they were ‘bad mothers’. Kingston (2007) notes that the community often believes that having a disabled child is the result of poor choices a mother made during her pregnancy. In our study, however, the blame was felt prior to diagnosis as mothers were made to feel that they were not parenting appropriately. Our research is based on qualitative research which allows for an in-depth understanding about the life of a group of mothers. Our findings have implications for the provision of health and social care for mothers of AS children in particular, and other disabled children in general. We contend that health care and social welfare professionals need to have a good understanding of the difficulties that these mothers endure which have impacted on their physical and emotional health. This understanding will lead to a more sensitive health and social care for these mothers. Acknowledgements We thank all the women who participated in this study. We are grateful for their generosity in sharing their private lives with us and for spending time keeping a diary for us amidst their busy day-to-day schedule.

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Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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