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

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. 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 non-disabled 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 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 career-advancement 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.

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 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 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 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 well-being. 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 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. 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.