Challenged and changed: Quiet ego and posttraumatic growth in mothers raising children with autism spectrum disorder

Abstract

Posttraumatic growth theory posits that when life circumstances are perceived as stressful, secondary appraisal processes can be recruited in ways to facilitate both coping efforts and personal growth. Using a mixed-methods approach, we found mothers’ most challenging experiences involved child behavior (e.g. aggression, communication, and social issues) and psychosocial impacts (e.g. lack of social support, perceived judgment of others, perceived loss, and personal distress). Descriptions of most rewarding experiences reflect posttraumatic growth frameworks including constructive perceptions about themselves, life, and their relationships as well as evidence for what Maercker and Zoellner call illusory types of posttraumatic growth. Quantitative data were subjected to a hierarchical regression analysis for self-reported posttraumatic growth and included mothers’ demographics, child functioning, and psychosocial measures. As predicted, posttraumatic growth was positively associated with social support from mothers’ most important network member and quiet ego characteristics, a type of eudaimonic motivation. Contrary to expectation, neither autism spectrum disorder–related rumination nor time since diagnosis (or their interaction) was associated with posttraumatic growth. Discussion focuses on the practical implications of our findings that posttraumatic growth-related coping includes both constructive and illusory forms and the importance of social support and eudaimonic motivation in facilitating positive forms of secondary coping.

Keywords

autism spectrum disorders posttraumatic growth quiet ego social support

Mothers raising children diagnosed with autism spectrum disorder (ASD) experience challenges that demand more resources than may be available (Estes et al., 2013; Lazarus and Folkman, 1984; Smith et al., 2010). ASD-related challenges are routinely rated as more stressful on average than those faced by mothers raising children with or without other types of disabilities (Ludlow et al., 2011; Ooi et al., 2016; Safe et al., 2012). Not surprisingly, these stressors are often associated with adverse outcomes, including marital dissatisfaction (Dunn et al., 2001; Hartley et al., 2010; Hastings et al., 2005; Neely-Barnes et al., 2011), depression (Hastings et al., 2005), and grief (Wayment and Brookshire, 2017). Most of the research studies that document mothers’ experiences have focused, understandably, on the challenges associated with raising a child with ASD. However, several qualitative and quantitative studies have described mothers’ positive experiences (cf. Ooi et al., 2016, for meta-synthesis). Positive experiences include deriving benefits from support groups (Corman, 2009; Kayfitz et al., 2010; Markoulakis et al., 2012), adapting to the challenges (Felizardo et al., 2016), responding to the challenges with hope and determination (Oprea and Stan, 2012), and cognitively reframing ASD challenges as positive and meaningful (Bayat, 2007; Hastings et al., 2005; Kapp and Brown, 2011; Marshall and Long, 2010; Midence and O’Neill, 1999; Myers et al., 2009; Neely-Barnes et al., 2011; Tunali and Power, 2002; Woodgate et al., 2008). These findings map well onto what Tedeschi and Calhoun (1996) call posttraumatic growth (PTG), which they define as more positive self-views, changed perspective about life, spiritual changes, improved relationships with others, and an increased appreciation of life.

Tedeschi and Calhoun’s (1996) definition of PTG is consistent with what Maercker and Zoellner (2004) call constructive PTG (e.g. identifying new personal strengths, finding meaning, and recognizing the ways in which one has changed in positive ways; cf. Calhoun et al., 2010). Zoellner and Maercker (2006) argue that PTG has a second component, called illusory growth, which reflects a type of adaptation that is facilitated by positively distorting one’s perceptions of the challenges. Similarly, Taylor and colleagues have long argued that in the face of stressful events, positive illusions facilitate coping by enabling individuals to restore a sense of self-esteem, control, and optimism (Taylor, 1983; Taylor and Armor, 1996; Updegraff and Taylor, 2000). To date, the literature on PTG in mothers coping with ASD-related challenges has primarily described constructive changes and has not explicitly examined illusory adaptations as indicators of PTG.

The term “PTG” implies that personal growth occurs after a “trauma.” Although the term “trauma” has been used in the stress and coping literature to characterize events such as death or disaster, it has also been used to describe subjective responses to events that overwhelm an individual’s ability to cope emotionally, cognitively, or physically (Pearlman and Saakvitne, 1995: 60). Thus, chronic forms of stress also have the potential to inspire constructive and illusory forms of PTG (Tedeschi and Calhoun, 2004). Lazarus and Folkman’s (1984) transactional model of stress and coping suggests that no event or situation is inherently stressful; instead, the stressor is defined by the subjective judgment of the situation that is appraised as threatening, harmful, or taxing of available resources (Lazarus and Folkman, 1984; Wortman, 2004; Zakowski et al., 2001). Thus, our investigation is based on the premise that to the extent that raising a child with ASD challenges basic assumptive beliefs about the predictability, controllability, and benevolence of the world, secondary appraisal processes that result in PTG are likely (Janoff-Bulman, 1992; Joseph and Linley, 2005).

Predictors of PTG reactions to challenging situations

Drawing from the general PTG literature, there are several factors that should be predictive of PTG in mothers raising a child with ASD (Tedeschi et al., 1998). One of the basic assumptions of PTG theory is that events that are disruptive, evidenced by ruminative thoughts, should be most likely to give rise to PTG (Park et al., 2004; Shakespeare-Finch et al., 2014; Tedeschi and Calhoun, 2004; Westphal and Bonanno, 2007). However, the existing empirical evidence regarding the relationship between rumination and PTG is mixed, and cross-sectional studies make it difficult to examine the temporal issues related to when ruminative thought is likely to facilitate PTG (Stockton et al., 2011). For example, individuals coping with significant challenges may require some time to pass in order for them to either have the psychological space to engage in the kinds of cognitive processing required to move from disruptive- to growth-related cognitions or have the time to put their experiences into perspective (Devine et al., 2010). Accordingly, we expected that PTG would be more likely reported by mothers who have had more time since their child was diagnosed with ASD. We qualified our prediction and expected an interaction between rumination and time since diagnosis. We expected PTG would be greater for mothers who had a longer time to adjust to their child’s ASD and who reported lower current rumination levels.

Next, the relationship between social support and PTG is one of the most robust findings regarding positive experiences with ASD (Ooi et al., 2016). Social support is central to mothers’ feeling less isolated, more encouraged, with better mood, and quality of life. Furthermore, this type of support helps mothers positively reframe their experience which also reduces the perception of stress and improve their quality of life (Bishop et al., 2007; Ekas et al., 2010; Poso et al., 2014; Pottie and Ingram, 2008; Pozo and Sarria, 2014; Weiss et al., 2013). In their study of 19 mothers of children with ASD, Kapp and Brown (2011) found that social support, especially from one’s spouse, was positively related to positive coping. Therefore, we also expected that social support from a mothers’ most important social network member would be positively related to PTG (cf. DeLongis et al., 1988).

Findings from the transactional model of stress and coping literature suggest that individual difference variables influence appraisal processes. For example, optimists have different goals, assumptions, beliefs, and expectations that impact appraisal and response to stressful situations (Park and Folkman, 1997). Thus, we examined a psychosocial factor we expected to facilitate PTG in mothers raising a child with ASD: eudaimonic motivation (Kaczmarek, 2017) which is the willingness to take action to reach one’s full potential, regardless of the circumstances (Huta and Waterman, 2014). Eudaimonic motivation reflects many of the same qualities known to be associated with PTG: self-discovery, self-awareness, and self-acceptance; positive relationships with others; autonomy and environmental mastery; and purpose in life and personal growth (Deci and Ryan, 2000; Powell et al., 2012; Ryff and Keyes, 1995; Waterman et al., 2010; Westphal and Bonanno, 2007). PTG has been found to be associated with individual difference variables such as optimism, self-esteem, personal mastery, and secure attachment (Owens, 2016; Prati and Pietrantoni, 2009; Tedeschi and Calhoun, 1996; Updegraff and Taylor, 2000). We reasoned that mothers with a more eudaimonic self-identity would be more likely to experience PTG. Wayment and Bauer (2008) coined the term “quiet ego” to describe four values adapted from eudaimonic ideas and principles (Wayment and Bauer, 2008) and developed a measure of the same name (Wayment et al., 2015a) that assesses a readiness and motivation to balance growth and self-protection motives (Wayment and Bauer, 2017). Thus, we predicted that mothers with stronger quiet ego characteristics would be more likely to report PTG in the context of raising a child diagnosed with ASD.

Although there have been many very good examples of qualitative research on mothers’ growth-related experiences, there is very little quantitative research on predictors of PTG in mothers raising children diagnosed with ASD. We have identified only three published studies that statistically examined predictors of PTG in mothers raising children diagnosed with ASD. In a study of 80 parents, Phelps et al. (2009) reported that caregivers reported both stressful and enriching experiences but neither were associated with caregivers’ perceived growth. In a qualitative study of 11 Chinese mothers, perceived social support, effective coping styles, and self-efficacy were associated with greater PTG (Zhang et al., 2015). In a sample of 102 Chinese mothers, mothers’ PTG subscale scores were differentially related to positive coping and deliberate and intrusive rumination (Zhang et al., 2013). Results from these studies are also somewhat limited by the small sample sizes used to examine predictors of PTG.

Study goals

We used a mixed-methods approach in a relatively large, national sample of US-based mothers to (1) assess mothers’ subjective accounts of the perceived challenges and rewards of raising a child with an ASD diagnosis and (2) empirically examine predictors of PTG. Our expectation is that a qualitative analysis of the reported challenges will support earlier stress and coping research in ASD populations documenting the types of stressors parents face and that these challenges reflect those that disrupt mothers’ worldviews (Ludlow et al., 2011; Ooi et al., 2016; Safe et al., 2012). Our qualitative analysis of mothers’ rewarding experiences is grounded in PTG theory, both in terms of what types of personal changes may be reported (Tedeschi and Calhoun, 1996) and whether there is evidence of both constructive and illusory forms of PTG (Maercker and Zoellner, 2004). In line with our theoretical arguments, our quantitative analyses will use a hierarchical regression analysis to examine four sets of predictors of PTG: (1) mother-related characteristics (age, education, income, multiple children with ASD, and ethnicity), (2) child-related characteristics (age, aggressive behavior, and comorbid issues), (3) ASD diagnosis variables (mothers’ ASD-related rumination and time since diagnosis), and (4) psychosocial resources (social support and quiet ego).

Methods

Participants and procedures

Mothers raising a child with ASD were recruited from the interactive autism network (IAN). Procedures were reviewed and approved by our university’s institutional review board and IAN. In April 2016, IAN sent email invitations to 5000 mothers with at least one child (2–18 years of age) with a documented ASD diagnosis. In 5 days, 424 expressed interest (13 actively declined, 4563 gave no response). Of the 424 interested, 364 (85%) followed a link to an informed consent document. Consenting participants were asked to complete the questionnaire about a child with an ASD diagnosis (called the “reference child”) and were provided with a US$15 gift card for completing the survey. Data were collected for 5 days, yielding a sample of 364 mothers.

Participants ranged in age from 27 to 71 years of age (mean = 43.08 years, standard deviation (SD) = 7.45 years). The average age of diagnosis was 4.14 years (SD = 3.07 years), and child’s current age ranged between 2 and 18 years (M = 11.63 years, SD = 4.08 years). The average time since ASD diagnosis was 7.7 years (SD = 3.9 years). In total, 81% of the children were male (n = 289). Just under half of the mothers (n = 150, 41%) reported having a single child. The remaining participants (n = 212, 59%) reported two or more children. Of these, 150 had 1 child diagnosed with ASD and 64 had more than 1 child diagnosed with ASD.¹

Our sample of mothers was predominantly white (85%, n = 299) with the remaining participants consisting of Latina (6.2%, n = 22), Asian (3.4%, n = 12), African-American (2.5%, n = 9), and Native American (2.3%, n = 8). In total, 12 individuals did not provide information about their ethnicity. Nearly two-thirds of the sample were married or in a domestic partnership (74%, n = 268), with remaining divorced (10%, n = 37), single (5.5%, n = 20), separated (1.7%, n = 6), or widowed (1.1%, n = 4). About 8% (n = 27) did not provide marital status information. Nearly 60% of the participants completed college (16.3%, n = 59) or graduate school (43.3%, n = 152). In total, 5% (n = 18) highest level of education was high school and nearly 30% reported some other form of education (n = 103). In total, 9% (n = 30) did not provide education information. The average personal income is US$40,386, with an average household income of US$101,364. Demographic data are presented in Table 1.

Table 1.

Demographic description of mothers and their ASD-diagnosed children (N = 364).

	X or N	(SD) or %
Mothers’ information
Age	43.08	(7.45)
Relationship status
Married	268	80%
Divorced	37	11%
Single, never married	20	6%
Separated	6	1.8%
Widowed	4	1.2%
Children with ASD
One child	300	82%
More than one child	64	18%
Ethnicity
Asian	12	3%
African-American	9	2%
Caucasian	299	85%
Hispanic/Latina	22	6%
Native American	8	2%
Pacific Islander	1	<1%
Socioeconomic status
Personal income	US$40,386	(US$42,326)
Household income	US$101,364	(US$75,725)
Years of education	16.34	(2.63)
Child information
Aggressive behavior^a	2.20	0.77
Comorbid health issues^b	1.47	1.50
Current age	11.63	4.08
Age at diagnosis	4.14	3.07
Time since diagnosis	7.7	3.9

ASD: autism spectrum disorder; SD: standard deviation.

Mothers asked to recall frequency of aggressive behavior in previous month on a 0- to 3-point scale; 2.2 falls between “often” and “very often.”

Mothers could list up to six comorbid health issues, and no respondent listed more than five.

Materials

The materials used for this study were part of a larger project regarding the experiences of mothers raising one or more children diagnosed with ASD that contained 20 measures. The first published study utilized 12 of these measures and examined unique predictors of grief and general distress reactions (removed for blind review). Of the seven measures in this study, two (social support and child aggressive behavior) were used in the previous investigation.

Background information

Mothers reported their age, ethnicity, highest level of education, marital status, number of other children (and whether they had an ASD diagnosis), and personal and total household income. Mothers provided information about their ASD-diagnosed child: age, gender, and month and year of diagnosis.

Child’s aggressive behavior

Mothers were asked how often argumentative/explosive behavior and defiant/disobedient behavior occurred in the past month using a 4-point scale (0 = never, 1 = occasionally, 2 = often, and 3 = very often). These two items were correlated and averaged for a measure of aggressive behavior (coefficient alpha = 0.78).

Child’s comorbid health issues

Mothers were asked whether their child had any other diagnoses (medical and/or psychological) other than ASD and if so, to list up to six. Responses were coded into 62 different categories. The number of comorbid issues were summed that ranged from 0 to 5. Among the most frequent conditions listed were attention-deficit disorder (ADD)/attention deficit hyperactivity disorder (ADHD), anxiety-related issues, and apraxia.

PTG

The Posttraumatic Growth Inventory (PTGI; Tedeschi and Calhoun, 1996) is a 21-item measure with five subscales: New Possibilities, Relating to Others, Personal Strength, Spiritual Change, and Appreciation of Life. Participants read “As a result of your child’s ASD diagnosis, to what degree have you experienced the following” and then rated items on a 7-point scale (1 = not at all; 7 = very great degree). Coefficient alpha was 0.94. Higher scores indicate higher levels of growth.

ASD-related rumination

ASD-related rumination was assessed with four items that were adapted from existing rumination scales. Respondents were asked to rate how often they had ruminative thoughts in the past month. Items were “Sometimes it is hard for me to shut off thoughts about my child’s ASD diagnosis,” “I tend to ‘ruminate’ or dwell over things that happen to my child with an ASD diagnosis for a really long time afterward,” “Long after my child was diagnosed with ASD, my thoughts keep going back to what has happened as a result,” and “I spend a great deal of time thinking back over my child’s ASD-related embarrassing or disappointing moments.” Items were rated on a 5-point scale (1 = not at all true for me; 5 = very true for me). Coefficient alpha for this scale was 0.81.

Social support

Participants answered three questions about social support adapted from a study examining loss of an infant to sudden infant death syndrome (SIDS; Lepore et al., 1996). Parents were asked to think about the “most important” person in their social network and how often (1 = never; 5 = all the time) they engaged in three forms of support (e.g. listen to you when you wanted to talk about your child’s ASD-related issues?). Coefficient alpha of this scale was 0.89.

Quiet ego

The Quiet Ego Scale (QES; Wayment et al., 2015a) measures a self-identity that is characterized as valuing growth and a balanced concern for self and others, conceptualized as the theoretical intersection of four psychological characteristics: detached awareness, inclusive identity, perspective taking, and growth. In total, 14 items were rated on a 5-point scale (1 = strongly disagree; 5 = strongly agree). Higher scores indicate greater quiet ego characteristics. Coefficient alpha for this scale was 0.78.

Mothers’ subjective perceptions of ASD challenges and rewards

At the beginning of the survey, mothers were asked “Please describe what you find most challenging about your child’s ASD diagnosis and related issues” and “Please describe what you find most rewarding about your child’s ASD diagnosis and related issues.” A total of two independent raters developed themes by reading each of the individual responses and identifying discrete patterns within the responses. Following initial codebook development, another member of the research team refined and combined categories. After finalizing the codebook, the researchers blindly coded the responses with a “0” if not present and a “1” if present. Each response could be coded into more than one category. Interrater reliability indicated a 97% agreement for question 1 and a 95% agreement for question 2. Discrepancies were resolved between coders following initial coding.

Results

Analytic plan

Our analysis plan includes both qualitative and quantitative analyses. First, we describe our qualitative analysis of respondents’ answers to two open-ended questions. These analyses (described in the “Methods” section) followed a directed content analysis approach (Miles et al., 2014). Our quantitative analyses were conducted with SPSS (Version 24.0 for Macintosh).

Mothers’ ASD-related challenges

We examined mothers’ open-ended statements about what they found most challenging about their child’s ASD diagnosis and related issues. The contents of mothers’ responses were classified into one or more of 18 categories (see Supplementary Materials for detail). Mothers’ responses contained an average of 2.15 coded categories (SD = 1.46). Mothers reported aspects of their child’s behavior as most challenging. For example, 61% of sample cited their child’s aggressive behavior (“He hurts himself and other children on an almost-daily basis”); their child’s communication difficulties (44%; “inability to understand all of his needs, wants, and questions”); child’s social difficulties (40%: “She is 11 years old and has never been invited to a birthday party”); and child’s physical and health-related problems (21%), rigidity/inflexibility (20%), and safety concerns (11%). Our sample also reported several psychosocial issues as most challenging, including a lack of social support (26%), perceived judgment of others (22%), feelings of hopelessness (21%), fear for their child’s future (16%), lack of control in daily life (14%), sense of loss from child’s unmet developmental milestones (10%), types of personal distress (11%; references to depression, anxiety, worry, and guilt), and physical exhaustion (7%). Some mothers cited school settings (22%), family issues (18%), service provider issues (16%), and financial difficulties (10%) as most challenging. Taken together, the content of mothers’ subjective responses supported extant research documenting that mothers’ experiences raising a child diagnosed with ASD are stressful and disruptive.

Mothers’ ASD-related rewarding experiences

We examined mothers’ open-ended statements about what they found most rewarding about their child’s ASD diagnosis and related issues. Mothers’ responses were coded such that the contents of their responses could be classified into one or more of 12 categories (see Table 2). Mothers’ responses averaged 1.60 coded categories (SD = 0.85, range: 0–3), fewer responses than when asked to report what was most challenging. The most frequent category codes were those that described positive aspects of their child’s characteristics or personality (83%; “He is the sweetest child I have ever met,” “not having to worry about what typical families worry about, sex, drugs, driving, staying out late”), their child’s intelligence (32%; “raising an extremely smart child”) and successes (34%; “He can write his own name and his neurotypical twin brother can’t yet”), and their child’s unique ways of thinking (28%; “He sees the world in a unique way…he is able to find solutions in ways that others don’t”). These types of responses could be considered relevant examples to what have been termed “illusory” growth in that mothers appeared to be coping positively reframing their perceptions of ASD or themselves (Obeid and Daou, 2015). For example, many of the comments mothers made included direct or indirect use of social comparison information known to be a way to bolster self-esteem, control, and optimism (Taylor, 1983).

Table 2.

Coding categories and sample frequencies for mothers’ responses to question about most rewarding aspects of raising a child diagnosed with ASD and related issues.

Coding category	% Sample
Perceptions of child’s ASD
Child’s positive characteristics/personality	83
Child’s unique way of thinking	28
Child’s ability to overcoming obstacles	34
Child’s intelligence; child’s unique abilities	32
Perceptions of self
Learning from and about their child	20
Becoming a better person (patience, acceptance, tolerance, less judgmental)	30
Strengthened relationships (with others and child)	8
Social support	18
Finding meaning	21
Savoring the positive	28
Other
Diagnosis was comforting	7
Nothing	10

ASD: autism spectrum disorder.

Mothers self-reports were coded into one or more of 12 categories. Sample percentages in the table are rounded up or down to nearest 0.5.

The next most frequent categories of responses of most rewarding experiences included what Maercker and Zoellner (2004) termed “functional” growth and included identifying their new strengths and abilities, finding meaning, and recognizing the ways in which ASD has changed them in positive ways. For example, large percentages of mothers gave examples of becoming a better person (30% “I am more patient and non-judgmental”), of learning from their child (20%; “I find learning more about my son every day rewarding”), having stronger relationships and social support (26%; “… connecting with other families who are in similar situations”), and finding meaning and new outlook on life (42%; “… don’t take any improvement for granted …,” “I learned to appreciate the little things”). About 10% of the sample said they could find nothing positive or rewarding in their experiences raising a child with ASD, and 7% thought that the diagnosis was rewarding in that it provided comfort and an avenue for early intervention. Taken together, our analysis of open-ended responses revealed that mothers’ perceptions of their most rewarding experiences raising a child with an ASD diagnosis included primarily examples of both constructive and illusory forms of PTG.

Predictors of PTG

Prior to conducting our analyses of interest, we conducted two exploratory analyses. First, a multivariate analysis of variance (MANOVA) for ethnic status (white vs non-white) revealed potential ethnic differences, F(1, 331) = 8.51, p < 0.004). White mothers reported lower PTG scores (mean = 2.99, SD = 0.97) and fewer years of education (16.20, SD = 2.40) compared to a group that combined black, Hispanic, Native American, Pacific Islander, and Asian mothers (PTG: 3.42, SD = 0.97, education: 17.08, SD = 3.62). Correlations revealed that PTG was negatively correlated with mothers’ years of education (r(364) = −0.12, p < 0.05) and positively correlated with social support (r = 0.29, p < 0.001) and quiet ego (r = 0.39, p < 0.001). Quiet ego and social support were related to less ASD rumination (r = −0.19, p < 0.001 and r = −0.12, p < 0.05, respectively). Time since diagnosis was related to less ASD rumination (r = −0.14, p < 0.05). Quiet ego and social support were positively correlated (r = 0.22, p < 0.001). Child aggressive behavior and number of comorbid conditions were unrelated (r = 0.02). Child aggressive behavior was positively associated with total family income (r = 0.12, p < 0.05) and negatively associated with social support (r = −0.12, p < 0.05). Product moments for all study variables are presented in Table 3.

Table 3.

Correlations among study variables (N = 364).

	1.	2.	3.	4.	5.	6.	7.	Mean	SD
1. PTG^a	–	−0.06	0.09	0.29***	0.39***	0.03	0.01	3.08	0.97
2. Rumin^b		−	−0.14*	−0.12*	−0.19***	0.05	0.05	2.40	1.0
3. Time^c			–	0.05	0.04	0.09	0.01	7.52	4.4
4. SS^b				–	0.22***	−0.12*	−0.07	3.99	0.85
5. QE^b					–	−0.03	−0.03	3.72	0.47
6. Agg^d						–	0.02	2.20	0.77
7. CoM^e							–	1.47	1.50

SD: standard deviation; PTG: posttraumatic growth; Rumin: ASD rumination; Time: time since diagnosis; SS: social support; QE: quiet ego; Agg: child’s aggressive behavior; CoM: comorbid health difficulties.

7-point scale.

5-point scale.

Years.

In past month.

Range = 0–5.

p < 0.05, ***p < 0.001.

To test our primary hypotheses regarding quiet ego and PTG, we conducted a hierarchical regression analysis. Step 1 included mother-related variables of age, years of education, total family income, whether she had multiple children with ASD, and ethnicity (white vs non-white). Step 2 included child-related variables of age, aggressive behavior, and number of comorbid health issues. Step 3 included variables of ASD rumination and time since diagnosis, and variables theorized as needed for growth-related meaning to emerge: ASD rumination as evidence of grappling with issues that challenge worldviews and time since diagnosis to afford mothers time to cope with these challenges. We also included the interaction term at step 3. Step 4 included two psychosocial resources, expected to also be positively associated with PTG: social support which is believed to aid mothers with stress appraisal processes and quiet ego characteristics, a form of eudaimonic motivation that should facilitate growth-related perceptions. The total model accounted for 25% of the variance in PTG, F(13, 348) = 10.02, p < 0.0001. White mothers and those with greater family income reported lower PTG. Contrary to prediction, neither ASD-related rumination, time since diagnosis, nor their interaction were related to PTG. Social support and quiet ego were both positively associated with PTG (Table 4).

Table 4.

Hierarchical regression predicting posttraumatic growth (N = 364).

Variable	B	SE B	95% CI		β	t	p
Constant	−0.276	0.589	−1.44	0.882	–	−0.469	0.639
Step 1: mother-related characteristics
Age	0.010	0.008	−0.006	0.025	0.070	1.252	0.212
Years education	−0.033	0.020	−0.073	0.006	−0.086	−1.654	0.099
Total income^a	−0.002	0.001	−0.002	−0.001	−0.160	−3.017	0.003
Multiple ASD children	−0.172	0.120	−0.408	0.063	−0.068	−1.438	0.151
Ethnicity^b	0.456	0.131	0.198	0.715	0.162	3.471	0.001
Step 2: child-related characteristics
Age	−0.030	0.022	−0.072	0.013	−0.125	−1.364	0.173
Aggressive behavior	0.045	0.045	−0.043	0.133	0.036	0.748	0.455
Comorbid health issues	0.016	0.031	−0.044	0.077	0.022	0.473	0.636
Step 3: ASD diagnosis–related variables
ASD rumination	0.043	0.047	−0.049	0.135	0.045	0.924	0.356
Time since diagnosis	0.139	0.084	−0.026	0.304	0.143	1.662	0.097
Interaction^c	−0.068	0.045	−0.157	0.022	−0.069	−1.486	0.138
Step 4: psychosocial resources
Social support	0.258	0.054	0.151	0.364	0.227	4.736	0.000
Quiet ego	0.693	0.099	0.498	0.888	0.338	6.982	0.000

SE: standard error; CI: confidence interval; ASD: autism spectrum disorder; PTG: posttraumatic growth.

Step 1: F(5, 56) = 5.11, p < 0.0001, R² = 0.07. Step 2: F(8, 353) = 3.40, p < 0.001, ΔR² = 0.00. Step 3: F(11, 350) = 2.95, p < 0.001, ΔR² = 0.01. Step 4 (final model): F(13, 348) = 10.02, p < 0.0001, ΔR² = 0.19, R² = 0.27, adjusted R² = 0.25.

Total income was transformed using a square root transformation to normalize skewness and kurtosis estimates. Step 3 variables were centered prior to entry into the model.

Comparison of white to non-white mothers.

Although the interaction was not statistically significant, the trend was in the following direction: when ASD rumination was high, PTG levels were similar regardless of how much time had passed since diagnosis. PTG was lowest for mothers who reported low ASD rumination and whose child was diagnosed more recently.

Discussion

We utilized a mixed-methods approach to gain an understanding of the most challenging and rewarding aspects of mothers’ experiences raising a child with ASD, whether there was evidence of both constructive and illusory forms of growth, and examined quantitative predictors of PTG with four sets of predictors. The existing literature describing the experiences of mothers raising a child diagnosed with ASD has largely, and understandably, focused on the associated challenges and stressors and their adverse impact on mothers’ well-being. Studies that have described parents’ positive experiences have been based on relatively small samples and not conceptualized within the PTG framework. Our study explored PTG-related issues associated with raising a child with ASD in an adequately sized sample of US-based mothers to test our hypotheses. Our study results add to the literature on ASD and PTG in several ways.

ASD-related stressors

Our qualitative analyses of mothers’ challenges support earlier research documenting that mothers’ most challenging ASD-related stressors have to do with their child’s behavior (Peters-Scheffer et al., 2012). For example, Benson (2010) reported that a child’s challenging behavior is associated with maternal depression, regardless of coping style. Our quantitative analyses found that aggressive behavior was reported by mothers as occurring, on average, somewhere between “often” and “very often” in the previous month. Although mothers’ rumination scores were at about the scale mid-point, we found no support in our regression analysis that ASD rumination was associated with PTG. Our failure to find this association is not new, as the literature on the relationship of ruminative thought and PTG is mixed. More recent evidence suggests, however, that reflective forms of rumination (compared to brooding types of rumination) may be more likely associated with PTG.

Constructive and illusory forms of PTG

Our qualitative analyses revealed that mothers’ open-ended reports of rewarding experiences reflected four of the five elements of typically reported as “constructive” growth (Tedeschi and Calhoun, 1996): more positive self-views regarding new strengths, changed perspectives about life, improved relationships with others, and appreciation of life. We did not find that mothers’ reported any type of spiritual change. The following quotes from some of our respondents provide good illustrations of such constructive growth-related secondary appraisals. Here, a mother described ways in which her self-views became more positive and how her outlook on life changed as a result of her experience:

… your entire outlook on life changes. Things that seemed so important prior to a diagnosis no longer hold importance when you have a child who doesn’t speak, who you were unsure if they could be potty-trained etc. By having a child(ren) with special needs you are forced to look at what is relevant. I have become much more grateful because of my girls. I’m grateful for the gains they make. I’m grateful when I have time alone. I have had the opportunity to become a far better person than I might otherwise have. I’m more patient, more kind and less judgmental.

Another mother’s example:

[ASD] forces me to celebrate the minor achievements most other parents would miss. Forces me to “pick my battles” and not stress about every single problem behavior exhibited. Has taught me to value all children who learn differently. Has introduced me to an amazing community of people who value children and value those with special needs. My son has taught me many lessons. He teaches me patience, tolerance and the ability to think ahead, i.e., what if […?]. He has taught me to take great pleasure in the small things, something non-ASD parents never get to know. He has taught me to live for the day, the minute and the second because you don’t know what the next second will bring. I know the joy of the first time he looked me in the eye or allowed a 1 second hug, or signed mom for the first time.

We also found evidence that mothers’ self-reported reflections about their most rewarding experiences reflected illusory forms of PTG, similar to those described by Taylor and colleagues as adaptive in the face of stress: positive illusions (Taylor, 1983; Updegraff and Taylor, 2000). This distinction has not been made previously in the ASD literature.

For example, this mother’s response shows evidence of interpreting her child’s behavior positively, using selective perceptions, evaluations, and social comparison processes:

Our child is sweet, charming, and has a good sense of humor. While he is high functioning, he does struggle with communication and social skills. Watching him struggle and then succeed is magical. I don’t think parents whose kids are “neurotypical,” whose kids pick things up easily, really appreciate the learning their children are doing because they don’t really see it as pronounced as we do. Our son is silly and quirky and lovable. He is creative and sees the world in a way I wish I could.

Taken together, our qualitative and quantitative analyses support stress and coping and PTG frameworks. First, mothers reported both ASD challenges and secondary growth-related appraisals. Furthermore, we found evidence for both constructive and illusory forms of PTG-related growth appraisals. Although our expectation was that ASD rumination would be associated with greater PTG, this hypothesis was not supported. Our corollary hypothesis that PTG may be more likely after more time has passed (as mothers reframe their experience) was also not supported. In their study of 93 parents raising a child with ASD, Pottie and Ingram (2008) also found no relationship between time since diagnosis and mood. We found only very modest support for the idea that rumination and time may operate in tandem (ASD is disruptive evidenced by ASD rumination → more time to adjust → higher PTG), in that mothers reporting the lowest levels of PTG were those who reported lower ASD rumination and whose child was diagnosed more recently.

Social support and PTG

Our results add to the literature regarding the importance of social support for PTG. In previous studies, social support is associated with feeling encouraged and hopeful, feeling less isolated, perceiving less stress, experiencing better mood, and quality of life (Bishop et al., 2007; Ekas et al., 2010; Poso et al., 2014; Pottie and Ingram, 2008; Pozo and Sarria, 2014). Our contribution to the literature here is that we found this relationship in a relatively large sample of mothers. Our qualitative analysis revealed that 26% of our sample reported social support as one of their most rewarding experiences, but the same number of participants reported that the lack of social support was one of their major challenges (cf. Obeid and Daou, 2015). Furthermore, 22% of our sample of mothers felt judged by others. Thus, the very resource that may be quite important to help reframe ASD in ways that facilitate PTG may be difficult to obtain. Although our results underscore the importance of social support to PTG, the large number of women who struggled with finding adequate support is noteworthy, consistent with earlier research, and underscores the importance of clinical and health-care workers to recognize that finding adequate and positive support for ASD-related issues continues to be an important issue.

Quiet ego and PTG

Our final contribution is that we examined the impact of individual differences in eudaimonic motivation as a predictor of PTG. We found that quiet ego characteristics were associated with more social support, less ASD rumination, and greater PTG. The association between PTG and quiet ego adds to the literature on the benefits of a eudaimonic perspective in coping with stress (cf. Wayment et al., submitted; study of adults coping with unemployment; Wayment and Silver, in press; study of college students coping with college shooting). Our results regarding quiet ego and PTG reinforce Bluth et al. (2013) recommendation that therapists and other health-care professionals working with mothers coping with ASD-related stressors incorporate eudaimonic elements into interventions (cf. Blackledge and Hayes, 2006, values-based intervention acceptance and commitment therapy (ACT); Zhang et al., 2014, brief therapy teaching positive and effective forms of coping; Karst and Van Hecke, 2012, for proposed model). For example, mindfulness-based parenting interventions have been shown to increase parents’ satisfaction with parent–child interactions and parenting skills in parents raising a child with ASD (Beer et al., 2013; Ferraioli and Harris, 2012; Singh et al., 2014). Although distinct from mindfulness in important ways, the quiet ego construct reflects a type of self-awareness, and the QES has shown moderate correlations with mindfulness measures (Wayment et al., 2011, 2015a). Thus, one potential contribution of our study is that a cultivation of balance and growth values could be important for mothers coping with ASD stressors. The quiet ego construct has been adapted into a brief cognitive intervention. A recent study found support for the intervention’s ability to strengthen quiet ego characteristics, and this increase was associated with reductions in psychological and physiological measures of stress (Wayment et al., 2015).

Limitations and future directions

Although our sample size (N = 364) is substantially larger than previous studies of ASD-related PTG, ours was also a sample of convenience from a national autism network, primarily consisting of white, highly educated, and married mothers. Even the high percentage of married mothers in this sample suggests that it is not representative. It is interesting to note that white mothers and those with more financial resources reported lower PTG. We found a correlation between child aggression and total family income, but child aggression was unrelated to PTG, rumination, or any other study variable. Thus, stress and coping theory can provide guidelines for future research to examine potential mediators of this unexpected finding. For example, women of color and those with fewer financial resources may experience more adversity which may affect their primary and secondary appraisal processes. Although not representative of the national population, mothers in our sample had mostly male (85%) children, diagnosed with ASD, on average, at the age of 4 years, with the average length of time since diagnosis about 7.5 years. These characteristics are similar to those compiled by national surveillance data regarding ASD prevalence rates in white, non-Hispanic households (Surveillance Summaries, 2016) as well as the samples of many of the published studies on the psychosocial consequences of raising a child with ASD that involve a very high proportion of mothers compared to fathers. Thus, our results should be interpreted cautiously for they do not necessarily apply to fathers (see similar issue raised by Ooi et al., 2016, in review). Another limitation is that our data were collected at a single point in time and unable to detect how perceptions of growth and resilience may unfold over time (Joseph et al., 2012). Longitudinal studies are greatly needed to understand how appraisal and coping processes unfold over time (Muslow et al., 2002; Ostberg et al., 2007; Somerfield and McCrae, 2000).

Conclusion

We utilized a mix-methods approach in a large sample of mothers to understand mothers’ ASD-related experiences. Our qualitative results demonstrate that mothers are able to use constructive and illusory growth as a way to cope with ASD-related stress. Our quantitative results suggest that social support and eudaimonic motivation may facilitate that process. Taken together, our quantitative and qualitative findings provide further insight into the basic tenets of PTG theory. Although our study examines mothers’ experiences in the context of PTG theory, we are not implying that raising a child with ASD is traumatic. Instead, we use a stress and coping framework to suggest that stress is perceived by mothers when ASD challenges exceed coping resources. Furthermore, consistent with a PTG framework, when secondary appraisal processes are levied in ways to find meaning and growth-related perceptions, coping with ASD-related stressors may be enhanced. One of the tangible benefits of research on PTG in mothers raising a child with ASD is the opportunity to understand what it truly means to live optimally—to develop those skills that reduce stress and increase efficacious coping efforts (Jayawickreme et al., 2015; Park et al., 2004; Seery, 2011; Vieselmeyer et al., 2017). Given that general psychosocial interventions help people make the most out of adversity (Roepke, 2015), our findings may prove useful for designing interventions to promote growth and resilience in mothers facing ASD-related challenges.

Supplemental Material

AUT763971_Lay_Abstract – Supplemental material for Challenged and changed: Quiet ego and posttraumatic growth in mothers raising children with autism spectrum disorder

Supplemental material, AUT763971_Lay_Abstract for Challenged and changed: Quiet ego and posttraumatic growth in mothers raising children with autism spectrum disorder by Heidi A Wayment, Rosemary Al-Kire and Kristina Brookshire in Autism

Supplemental Material

AUT763971_Supplementary_Material – Supplemental material for Challenged and changed: Quiet ego and posttraumatic growth in mothers raising children with autism spectrum disorder

Supplemental material, AUT763971_Supplementary_Material for Challenged and changed: Quiet ego and posttraumatic growth in mothers raising children with autism spectrum disorder by Heidi A Wayment, Rosemary Al-Kire and Kristina Brookshire in Autism

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Heidi A Wayment

Kristina Brookshire

Notes

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