BACKGROUND
PARENTING IN THE FACE OF AUTISTIC SPECTRUM DISORDER
The birth of a child with a disability is undoubtedly a critical moment in the life of a family, strongly undermining the stability of family homeostasis. As a consequence of this crisis, it becomes necessary for the family members to re-evaluate their whole lives. Mothers of children with autistic spectrum disorder (ASD), a neurodevelopmental disorder characterised by abnormalities in social communication and interaction as well as limited, repetitive patterns of behaviour, interest and activity (APA, 2013), are particularly vulnerable to stress and burnout. Researchers point out that parents, especially mothers of children with autism, live in particularly stressful conditions and the intensity of their stress is greater compared to families raising children with intellectual disabilities (e.g., Estes et al., 2013; Hayes & Watson, 2013; van Steijn et al., 2014). Both parents show symptoms of anxiety and depression (Catalano et al., 2018; Zarbo et al., 2016). In this study I decided to analyse the perception of social support by mothers of autistic children depending on their level of psychological resilience. Through this study I seek to gain knowledge about how the dispositional feature of resilience determines the perception of social support.
THE ROLE OF SOCIAL SUPPORT IN PARENTS OF CHILDREN WITH AUTISM
Social support positively affects general psychophysical well-being and develops proactive coping strategies to help overcome difficulties effectively (Fowler & Christakis, 2008; Thoits, 2011; Cicchetti, 2013). Studies of social support for families raising a child with autism clearly indicate its stress-neutralising effect. Studies of parents of children with ASD indicate a link between higher levels of social support and lower levels of negative impact of a child’s disability on the well-being of parents (Bishop et al., 2007), lower incidence of mental disorders (Bromley et al., 2004), negative mood (Pottie et al., 2009), and depressive symptoms (Benson & Karlof, 2009; Ekas et al., 2010). Social support also minimises the social stigma affiliation of parents of ASD children, i.e. the feeling of being stigmatised by difficult behaviour, which causes embarrassment, shame and social withdrawal (Cantwell et al., 2015; Werner & Shulman, 2015).
PSYCHOLOGICAL RESILIENCE OF PARENTS OF CHILDREN WITH AUTISM
Studies of families raising children with autism indicate a relationship between psychological resilience (manifested by good adaptation in the face of adversity, trauma, tragedy, threats or significant sources of stress, which largely determines positive, authentic adaptation to this disability) and social support. Parents resilient in the face of the diagnosis of autism in their child make a number of significant reformulations in their life, giving it a new quality. These include, above all, strengthening intra-family ties based on empathetic, open communication and flexible adaptation to the new roles that disability imposes on the members while maintaining family rituals (Kapp & Brown, 2011; Leone et al., 2016; Walsh, 2006), as well as a change in life philosophy by revising existing priorities and life goals, focusing on the small joys of everyday life, developing greater sensitivity, patience, care, strengthening of faith, changing attitudes towards oneself and the child based on attention, tolerance and a sense of exceptionality (Bayat, 2007; Levine, 2009; Sekułowicz & Kaczmarek, 2014). Regardless of the current dualism in defining resilience (personal trait or strength building process), it is a consequence of certain factors. Researchers have identified education (Kavaliotis, 2017), optimism, positive emotions and problem-based strategies (de Schipper et al., 2008; Kayfitz et al., 2010; Peer & Hillman, 2014), hope and social support (Horton & Wallander, 2001) and care for psychophysical health (Kasprzak et al., 2013).
RELATIONSHIP BETWEEN RESILIENCE AND SOCIAL SUPPORT
Resilience as a personal trait is understood as a specific mechanism of universal self-regulation which should shield against the consequences of negative life experiences, both traumatic ones and those related to everyday worries. This mechanism includes cognitive, emotional, and behavioural elements, with the first ones listed concerning, among others, the perception of reality in the category of challenges, as well as the perception of one’s own competences. Emotional elements are connected with positive affect and emotional stability. Behavioural elements, on the other hand, manifest themselves in the search for new experiences and taking up different coping strategies. According to this interpretation, resilience promotes perseverance and flexible adaptation to life’s requirements, facilitates mobilisation to undertake remedial actions in unfavourable circumstances, and increases tolerance for negative emotions and failures (Ogińska-Bulik & Juczyński, 2008). Psychological resilience, treated as a trait, can be a starting point for taking action to secure potential sources of support to help overcome a difficult situation (e.g., Jalilianhasanpour et al., 2018; Oshio et al., 2018; Southwick & Charney, 2012). It is a lasting force that shapes the dynamics of problem-solving activities, determines proactive coping strategies, e.g. mobilisation, seeking and readiness to accept social support. Individuals with a high level of resilience present lower anxiety and fewer symptoms of depression, which favours mobilisation of the organism at both physiological and psychological levels to undertake effective remedial strategies (Lee et al., 2004). Resilient personality is characterized by an optimistic approach to life and treating life difficulties as a challenge rather than a tragedy. A social network, usually extensive (in resilient individuals), fosters a better perception of the support available (Letzring et al., 2005; Ruiz-Robledillo et al., 2014; Southwick et al., 2016).
THE CURRENT STUDY
In this study, I have adopted the approach to resilience as a personal trait. I assume that raising a child with autism will pose a challenge for resilient mothers. As an attempt to take it on, they will apply effective coping strategies and relative emotional stability will be conducive to perseverance. I presume that a higher level of resilience will correlate with a better perception of the available social support, a greater demand for support resulting from the openness to receive help, a more intensive search for help as a consequence of using proactive remedial strategies, and a better evaluation of the support received. I also assume that variables such as age or education can moderate the relationship of resilience and social support. Age is a variable related to life experience, mental maturity and the development of adaptive coping strategies (e.g., Cantwell et al., 2015; Schwaba et al., 2019). Education is related to strategies of using environmental and individual resources in the process of both coping with the challenges of raising a child with autism and seeking support (e.g., Hrdlicka et al., 2016; Manohar et al., 2019).
PARTICIPANTS AND PROCEDURE
PARTICIPANTS
The study involved 143 individuals aged 26-51 years (M = 38.41, SD = 5.02), mothers of children with an ASD diagnosis. In 114 cases (79.70%) the diagnosis concerned a boy, in 29 cases (20.30%) a girl. Most of the examined women had a master’s degree (n = 83; 58%), 7 mothers (4.90%) had a bachelor’s degree, 48 women (33.60%) had secondary education, 4 women (2.80%) had basic vocational education and only 1 woman (0.70%) had basic education. Among the mothers surveyed, 98 (68.50%) were married, 32 (22.40%) were unmarried and 13 were divorced (9.10%). A majority of those surveyed (n = 103; 72%) lived in large cities with a population of over 100 000 inhabitants. Twenty-three of those surveyed (16.10%) resided in cities of 20 to 100 000 inhabitants. There were 6 respondents (4.20%) living in cities of up to 20 000 people and 11 women (7.70%) living in villages. Among the respondents, 124 (86.70%) were white-collar workers, 13 were manual labourers (9.10%) and 6 were unemployed (4.20%). In 84 cases (58.70%), family income exceeded the minimum wage per person. 27 respondents (18.90%) reported earning the minimum wage and 32 mothers (22.40%) reported lower earnings. The participants of the survey were recruited from Early Intervention Centres (EIC), which deal with the therapy of children aged 0-7 with ASD in Mazovia.
MEASURES
The study used tools to measure social support and resilience.
The Berlin Social Support Scales (BSSS; Łuszczyńska et al., 2006). The BSSS questionnaire is used to measure cognitive and behavioural dimensions of social support. It consists of statements, grouped into five independent scales, evaluating the perceived support available, the need for support, the search for support, the support currently received and the protective support. The tool examines the following dimensions of support: emotional, instrumental, informational, as well as demand for support. The tool has satisfactory Cronbach’s α reliability coefficient values. For individual scales, they are α = .90, α = .71, α = .80, α = .90, α = .80 for perceived available support, the need for support, the search for support, the current support, and the protective support, respectively.
Answers are given on a Likert scale from 1 (completely untrue) to 4 (completely true). The result is calculated by adding the marked answers together within each subscale. A higher score means a higher level of social support. The first four scales were used in the current study.
The Resilience Scale (Ogińska-Bulik & Juczyński, 2008). The Resilience Scale (SPP-25) is used to measure psychological resilience treated as a self-regulatory ability, having a universal dimension protecting against negative consequences of the events experienced, regardless of their nature. Using a five-level Likert scale, the scale measures both the overall resilience score, obtained by summing up the responses, and the results of individual subscales. The elements forming the individual subscale require the testee to determine the level of agreement with a given statement, where 0 means definitely no, and 5 stands for definitely yes. A higher score means higher intensity of resilience. The overall reliability score, measured by Cronbach’s α, is satisfactory, α = .89. The tool has five subscales: perseverance and determination in action (α = .72), openness to new experiences and a sense of humour (α = .68), personal competence to cope and tolerance for negative emotions (α = .74), tolerance to failure and treating life as a challenge, optimistic outlook on life and the ability to mobilise in difficult situations (α = .75).
PROCEDURE
The research was conducted among mothers of children with an ASD diagnosis, recruited from Early Intervention Centres (EICs) in Mazovia, one of the provinces in Poland. The mothers received an invitation to the study, which informed them about the aim of the study, anonymity and voluntary participation. Two hundred sets of research tools were distributed. Eventually, 143 complete sets of completed questionnaires were returned to the author, which is the full number taken into account in the analysis of the test results.
The tools were handed out personally by the author of the research, who, if necessary, provided guidance on how to complete the questionnaires. The research sample was selected deliberately, i.e. based on its specific characteristics. In order to avoid too many disturbing variables, mothers of young children under the care of EICs were selected, as the support offered to both children and their families is standardized in those facilities.
The purposefulness of sample selection reflects the need to examine specific characteristics and qualities of individuals.
RESULTS
Table 1 presents descriptive statistics for the analysed compartmental variables. They were supplemented with the values of the Kolmogorov-Smirnov test, which verified the assumption of normal distribution of the analysed variables.
Table 1
Descriptive statistics of the analysed variables
Statistically significant deviations from the normal distribution were obtained in the case of emotional, instrumental, informational, and need for support, while in the case of results on the scales of persistence and determination in action, openness to new experiences and sense of humour and tolerance to failure. Subsequent statistical analyses were therefore carried out on the basis of the bootstrapping method, which does not require a normal distribution of variables.
PSYCHOLOGICAL RESILIENCE AND SUPPORT INTENSITY
Table 2 shows non-parametric Spearman’s rho correlation coefficients between the dimensions of psychological resilience and support intensity. Statistically significant coefficients were determined.
Table 2
Correlation coefficients between the dimensions of psychological resilience and the intensity of support
Persistence and determination in action correlated negatively with the demand for support and positively with the emotional and informational support from the closest individual. All other dimensions of psychological resilience correlated positively with emotional support, instrumental support and all the dimensions of support from the closest individual.
AGE AS A MODERATOR OF THE RELATIONSHIP BETWEEN PSYCHOLOGICAL RESILIENCE AND SUPPORT
The age of the respondents was analysed as a moderator of the relationship between psychological resilience and support. Each of the five dimensions of resilience and the overall level of resilience and each support indicator were analysed in a separate model. A total of 48 models were analysed. The analysis was carried out using the Hayes macro in model 1 based on the bootstrapping method. The interpretation of the obtained interactive effects was based on the Johnson-Neyman method.
Statistically significant interaction effects were obtained between age and openness to experience and overall resilience level in the models where the search for support was analysed as an explanatory variable (B = .01-.07, B = .01-.06 respectively, p < .05). Statistically significant interactions between age and optimistic outlook on life were also found in models where emotional support and task support from a loved one were analysed as explanatory variables (B = .01-.07, B = .01-.07 respectively, p < .05).
It was found that a positive correlation between openness to experiences and searching for support occurred only in older people, i.e. at least 39.33 years old, B = .17, t = 1.98, p = .253. Among younger people the correlation was statistically insignificant. Likewise, a positive correlation between the general level of mental resilience and the search for support was observed only in older people, i.e. at least 38.91 years old, B = .17, t = 1.98, p = .230. Among younger people, it was statistically insignificant. A positive correlation between an optimistic outlook on life and emotional support was similarly observed only in older people, i.e. at least 35.26 years old, B = .18, t = 1.98, p = .269. Among younger people, it was statistically insignificant.
Likewise, a positive correlation between an optimistic outlook on life and task support from a loved one occurred only in older people, i.e. at least 37.64 years old, B = .16, t = 1.98, p = .268. Among younger people it was statistically insignificant.
HIGHER EDUCATION AS A MODERATOR OF THE RELATIONSHIP BETWEEN PSYCHOLOGICAL RESILIENCE AND SUPPORT
Higher education of the respondents was also analysed as a moderator of the relationship between psychological resilience and support.
A statistically significant interaction effect between the education of the subjects and openness to experience was found in the model where the level of emotional support was analysed as an explanatory variable (B = –.86-–.04, p < .05).
The positive correlation between openness to new experiences and emotional support was stronger in the group of people without tertiary education, B = .66, t = 3.53, p < .001, than in the group of people with tertiary education, B = .22, t = 2.35, p = .244, but it was statistically significant in both groups.
DISCUSSION
The aim of the research was to analyse the relationship between the psychological resilience of mothers of children with autism and social support perceived by them. The results discussed below overlap with existing studies sharing a similar subject area. What distinguishes them is their social context that is conditioned by the traditional perception of autism, based on stigmatizing myths which are still common in Poland (CBOS, 2021), where autism is still understood as a disease and interventions are mainly focused on finding a way to cure it, which makes it difficult to accept autism and seek support in building a good quality of life with a child with autism. This traditional approach derives from the medical model of disability, focusing more on eliminating autism rather than supporting its neurodiverse way of perceiving life. (e.g., Gąciarz, 2014; Lipiec & Setkowicz, 2017; Mirski & Mirska-Tomasz, 2018). The attention and actions of those meant to support people with disabilities are solely focused on them, with no regard given to the families. The contemporary approach to autism balances between two extreme approaches, with one accepting autism as a different way of behaving and focusing on social support and the other resulting from the medical model. In the Western world, the former approach is becoming more and more widely accepted. Those in the autism acceptance movement define autism as a variation in normal human diversity to be accommodated and embraced rather than a condition that must be cured. This view is rooted in the perspective of disability as a social construct rather than an inherent, immutable, and broken part of a person (Armstrong, 2011; Silberman, 2015).
In Poland, families of children with autism and other disabilities function on the margins of the support system, which has nothing to offer them. The lack of an organised aid strategy on the part of the state differentiates the perception of social support by the mothers of children with autism living in Poland. For this reason, I presumed that the perception of support would depend on the personal trait of resilience and not on the quality of the support offeredIn the study I presumed that the higher the level of resilience was, the better the perception of social support in mothers of children with ASD would be. The results indicated statistically significant positive correlations between the perceived emotional and instrumental support and all dimensions of psychological resilience, which confirmed my presumption. Emotional support seems to be the basic dimension of non-formal support (e.g., family), while instrumental support is the essence of formal support. Individuals with a high level of resilience express their openness to receive help from their loved ones, thus protecting themselves against the symptoms of parental burnout (Marsack & Samuel, 2017). Emotional support promotes a positive assessment of one’s own circumstances and determines proactive actions (Lu et al., 2018; Pepperell et al., 2018), among which is the search for knowledge about caring and educational strategies aimed at improving parental competences, which is an instrumental dimension of support (e.g., Mishra & Sreedevi, 2016; Sankey et al., 2019; Suzuki et al., 2015).
The correlation analysis showed a statistically significant positive relationship between tolerance of failure and treating life as a challenge, and the perceived emotional support. The higher tolerance of failure and treating life as a challenge are rated, the greater is the level of perceived emotional support. Existing studies confirm the results obtained. Perceived social support has a comforting, reassuring and self-efficacy-enhancing quality in the case of parents of autistic children (Bolger et al., 2000; Green & Rodgers, 2001). It is in this area that emotional support seems to be the most important, which includes in its definition the strengthening of the described aspects of mental toughness, developing confidence in oneself and in the legitimacy of one’s actions, as well as the generalisation of an optimistic perspective that mobilises to action and at the same time makes one immune to possible failures (e.g., Cunningham & Barbee, 2000; Reis, 2001). For mothers, emotional support seems to be of particular importance given that research points to stress management strategies based on emotions as the ones most frequently chosen among mothers of children with autism (Salas et al., 2017; Zablotsky et al., 2013). Studies by Robinson and Weiss (2020) analysing the perceived and received support by parents of children with autism showed that the mere awareness of the availability of support is itself a kind of emotional support, strengthening parents in action.
The demand for support proved to correlate negatively with perseverance and determination in action. Perhaps these features were conducive to mothers taking remedial actions on their own and thus to a lesser need for external sources of support, especially since the Polish support system for families of people with disabilities does not offer assistance providing adequate social support in each of its dimensions to the families of children with autism. In practice, there is no implementation of the biopsychosocial model, taking into account the needs resulting from disability in the systemic dimension. The attention of aid institutions, rooted in the medical model of disability, focuses mainly on the child, excluding the parent from intervention (Bakalarczyk, 2015; Kowalczyk, 2016). The diversity of approaches to autism causes chaos in the support system, making it difficult to develop a coherent therapeutic path. This situation may force some mothers to navigate the therapeutic process of their children, which is supported by perseverance and determination in action. Studies by Khan and colleagues (2017) indicate a higher level of resilience of mothers of children with autism compared to mothers of children without autism, which may perhaps be the result of the need to make decisions and act on behalf of their children. In Western countries, the term ‘warrior mothers’ has become commonplace for women raising children with autism in order to reflect the specificity of their position and the effort they have to make to ensure a satisfactory quality of life for both the child and themselves, which absolutely requires effort and determination (cf. De Wolf, 2014; McCarthy, 2008). The result obtained seems to be in line with the general principle of learned helplessness, according to which, as the sense of loss of control develops, people become convinced of the ineffectiveness of their own efforts and give up taking action (Maier & Seligman, 1976). The support received by mothers can be addictive in nature and develop a passive approach to remedial action. Conversely, the greater the independence, the less support is needed.
The study showed that there were positive relationships between openness to experience and overall resilience levels and seeking support only in the case of older people, i.e. at least 39 years old. The results may be related to certain psychological consequences of adulthood. Older people are more emotionally stable (e.g., Brose et al., 2013; Kryla-Lighthall & Mather, 2009). They have better developed and more proactive strategies for dealing with difficulties (Lu et al., 2018; Neubauer et al., 2019). Experiences of overcoming difficulties successfully using the most effective strategies develop self-confidence and also promote openness to new experiences in seeking support. Openness to experiences may also be a result of older parents’ readiness to accept support. Hrdlicka and colleagues (2016) have shown that the experience of older parents of children with autism fosters better handling of their children’s health care, which is closely related to the benefits of support.
The study also showed a positive relationship between optimistic attitudes to life on one hand and emotional support and satisfaction with support on the other. It only occurred in older people, i.e. at least 35 years old. There are studies that show an increased level of optimism over time (e.g., Jiménez et al., 2017; Schwaba et al., 2019). Experiences of effectiveness increase optimism. Studies by Sheldon and Kasser (2001) confirm the hypotheses assuming a positive relationship between mental maturity, optimism and a generalised sense of happiness in older people. Such parents have a more established personality and are therefore less susceptible to the consequences of social stigmatization. Emotional support is an important factor in increasing self-esteem, which together with high self-assessment is an important buffer reducing the level of social stigma experienced by families with a child with disabilities (Cantwell et al., 2015). Resources in the form of emotional support, which foster the development of an optimistic attitude, lead to satisfaction with the support, which, according to parents, yields the expected results.
In the study, the positive relationship between openness to new experiences and emotional support proved stronger in the group of people without higher education than among people with higher education. Parents with higher education may feel more shame as a result of confronting their own ambitions for their child with the actual state. The higher the socioeconomic status, the higher the expectations that the child will achieve a similar life success or follow in the footsteps of the parent (cf. Mathew et al., 2019; Nachinaab et al., 2019). The shame and disappointment of parents with their child’s disability can make it difficult to mobilize for support and experience. Studies by Riany and colleagues (2019) showed that in some cultures, families with a better socio-economic status feel more shame about having a child with autism and try to hide the symptoms of autism in the child to reduce embarrassment. Low awareness of autism in Poland and the current medical model, which treats ASD as a disease, cause embarrassment for parents with higher education and frequent concealment of the diagnosis (see Buchholz & Ilnicka, 2018). An alternative explanation may be the tendency of more educated parents to observe developmental abnormalities earlier and consequently diagnose autism earlier than less educated parents, as confirmed in other studies (e.g., Hrdlicka et al., 2016; Manohar et al., 2019; Rubenstein et al., 2018). Early diagnosis and intervention free the parents, as it were, from the obligation to monitor the child’s therapy and engage in the search for support. Yang and his team (2016) also found that parents with higher education are more likely to suffer from depression as a consequence of having an autistic child compared to parents without education, which makes it difficult for them to actively seek help or be open to experiences. In turn, studies by Al-Kandari and colleagues (2017) showed that better educated mothers of children with autism are less satisfied with their lives, which the authors of the studies interpret as being due to having greater awareness of the consequences of their child’s disorder and experiencing more frustration when faced with new problems. Moreover, a study by Hidalgo and colleagues (2015) showed that parents with higher education report less satisfaction with the support offered compared to less educated parents. Lesser satisfaction may generate passive attitudes and an assumption of ineffectiveness of the support measures taken in the face of newer and newer difficulties, which leads to withdrawal from seeking support.
LIMITATIONS
This study is not without weaknesses. One of the primary limitations of the study was the small research group, limited to 143 people, so we should be careful when drawing conclusions based on representativeness. Another limitation was the narrow field of research. The women came from Mazovia, one of the richer geographical regions with the capital city of Poland, which may have influenced SES (socioeconomic status) that differentiates the perception of support. The study did not take into account some sources of support, i.e. material, institutional and non-institutional ones. Differentiation of the results according to the child’s age was not performed either. Therefore, it was not possible to deduce the amount and diversity of support that mothers receive, which could also be relevant to the perception of social support. It was not possible to apply more advanced methods of data analysis due to their structure, as well as the research model applied (a cross-sectional study). Moreover, it was not possible to take into account the variety of variables that could determine the perception of social support by mothers of children with autism.
CONCLUSIONS AND FUTURE RESEARCH DIRECTIONS
In the study I analysed the relationship between the psychological resilience of mothers of autistic children and the emotional and instrumental support they perceive or should receive. In addition, I checked the importance of demographic characteristics such as age and education for the relationship analysed. The results are consistent with other results presented in a similar area, but the specific context of this study should be taken into account in Poland; the medical model of disability still plays a predominant role, which means that little consideration is given to the needs and problems of families in which a child with disabilities is raised. The research covered mothers of the youngest children, women who still struggle with strong emotions related to the early stage of adaptation to disability (cf. Twardowski, 1999). With these studies, I wanted to draw attention to this still unexplored area, the more so as it concerns the period that requires the involvement of personal resources, including resilience, to be able to confront the child’s disability and undertake constructive strategies to deal with the challenges of upbringing. The ability to seek and benefit from support can be a key resilience trait for successful adaptation. Additionally, extreme groups in terms of the severity of the trait of resilience were distinguished. For this purpose, the standards developed by the authors of the SPP-25 were used. Thirty-three (23.10%) respondents had high and 22 (15.40%) low intensity of resilience. However, further analysis is necessary, taking into account more detailed variables related to social support, differentiating these groups.
The results may be important for therapeutic practice, especially in the area of support for families of children with disabilities. As a neglected area, it requires psychological intervention that will be able to strengthen parental resilience. Families with a high level of resilience will be able to make more effective use of the social support offered, which will translate both into the quality of life of parents and their relationship with the child. Working with resources and finding sources that can strengthen or develop desired qualities can be the mainstay of individual work with parents or in training and workshops.
