Correlation between the assessment of family relations and psychological factors in mothers of children diagnosed with autism and Asperger’s syndrome


 
 
 The aim of the work was to analyze correlation between the assessment of family relations and the assessment of the child’s functioning and psychological factors (stress-coping style, burnout, adaptation level, coherence, a sense of social suport, and mental health) in mothers of children with Asperger’s syndrome and childhood autism.
 
 
 
 The study included 70 mothers of children treated in mental health clinic (52 mothers of children with Asperger’s syndrome and 18 mothers of children with autism). The study used a battery of psychological tests.
 
 
 
 In the group of mothers of children with autism, there are significant correlations between the assessment of relations in the family and stress-coping styles and burnout. In the group of mothers of children with Asperger’s Syndrome, there are significant correlations between the assessment of family relations and the assessment of the child’s disorder, burnout, a sense of coherence, emotional support and mental resilience.
 
 
 
 Based on the statical analyzes, the following conclusions were formulated: 1. Positive assessment of family relations by women raising children with autism is associated with the use of a task-oriented stress-coping style, whereas negative assessment – with the loss of personal involvement.2. Positive assessment of family relations by women raising children with Asperger’s syndrome is associated with a sense of control, instrumental support, mental resilience, and negative – with the assessment of the child’s disorder as a threat, burnout, loss of efficacy, personal involvement and decreased emotional control.



Introduction
Childhood autism and Asperger's syndrome are classified as pervasive developmental disorders according to the International Classification of Diseases ICD-10 [1] and as autism spectrum disorders according to the DSM-5 [2] classification. Autism spectrum disorders develop in about 1.5% of the world's population [3] and their etiology is multifactorial.
Raising a child with these disorders is a particularly burdening situation for parents [4][5][6][7][8][9]. The child's mental and physical disability may contribute to developing negative consequences: the development of symptoms of depressive disorders in parents, a sense of lack of parenting competences, intensification of stress level, weakening emotional bond between family members and, consequently, divorce, as well as financial difficulties and burdens [10]. The main problems enumerated by parents of children with these disorders include problems with accepting the symptoms observed in the child, accepting a medical diagnosis, and constricted access to healthcare and social support [11]. Parents may have various protective reactions at the stage of diagnosis. These include mechanisms aimed at reducing negative feelings and protection against helplessness, anxiety, and guilt. Increased mothers' anxiety, a sense of the child's strangeness coming from difficulties in establishing communication, social interactions, and emotional bond with the child are noticeable. The observed symptoms of disorders make it difficult for parents to identify the child's real needs and problems, and subject them to communication failure. Such a situation is conducive to parents' response with a sense of guilt, helplessness and despair [12]. The severity of symptoms in the child is associated with a higher level of load on the parents and the family system [13][14][15].
Hobson et al. emphasise the correlation between worsening of autism symptoms in children and the quality of parent-child interaction. It was found that worsening of autism symptoms in a child was correlated with poorer quality of parent-child interaction and low parental involvement in these relations [16]. According to Korena-Karie et al., good relations between children with autism spectrum disorders and their parents are associated with a variety of children's developmental achievements and higher parental sensitivity. Increased symptoms belonging to the autism spectrum in children co-occur with a higher level of difficulty in relations with family members [13,17]. Kandel and Merrick point out that the diagnosis of a child's disability introduces the family to new reality. Research shows that the response of a family to the birth of a child with disability varies depending on the type of disability [18]. In Pisula and Mazur's view, parents of children diagnosed with autism have lowered self-esteem and react with frustration coming from the unmet need for emotional contact with the child [19].
Ben Thabet et al. and Leshewicz et al. emphasise problems related to the child's disorder, pressure, marital tension, adaptation to the ensuing situation connected with the child's difficulties, satisfaction with relations between family members and marriage acceptance and harmony [20,21]. Higgins et al. report that 41% of parents of children with autism spectrum disorders reported experiencing stress in marital relations, and 25% confirmed negative influence of the child's problems on family life [22]. Gau et al. and Brobst et al. emphasised a much lower sense of marital happiness, lower satisfaction with marital relationship of parents raising a child with autism, and a higher level of stress compared with parents of children developing properly [23,24]. Saini et al. believe that parents raising a child with autism spectrum disorder are accompanied by strain in relationship coming from social isolation, limited opportunities of spending time with each other, differences in child-rearing approach, different stress-coping styles, financial burdens, fears related to interactions between siblings and the lack of access to medical services [25]. Hoffman et al. pointed to a significant correlation between children's autism and parents' poor health, higher level of depression and negative perception of a spouse, as well as the degree of closeness or the level of mother and child bond [14].
Riyahi et al. compared the performance of parental tasks by parents of children with physical and mental disability and by parents raising healthy children under 7 years of age. They showed that the presence of disability in a child may be conducive to parents' excessive concentration on meeting its basic needs, while ignoring other areas, e.g. the lack of support for cognitive development [26].
Bennet and Hay emphasised the development of a moderately high level of conflict in families of children with disabilities [27]. The parent's well-being is especially important for the proper development of the child. Parents' irritation, fatigue, and exhaustion adversely affect their ability to cope with stress, overcome daily hardships, as well as build a positive bond with the child [28]. efektywności działania, przedmiotowego zaangażowania i obniżeniem kontroli emocjonalnej.

Aim
The aim of the work was to analyze the correlation between the assessment of family relations and the assessment of the child's functioning (assessment of the child's condition, exacerbation of symptoms of disorders) and psychological factors (stress-coping style, the feeling of burnout, adaptation level, coherence, a sense of social support and mental health) in mothers of children with Asperger's syndrome and childhood autism.

Study material
The study sample included 70 women, 18 of whom are raising a child diagnosed with childhood autism, and 52 -a child diagnosed with Asperger's syndrome. Children with the listed pervasive developmental disorders are from 5 to 16 years old (M=11.1 years). Fifteen boys (83.33%) and three girls (16.67%) were diagnosed with childhood autism, and forty four boys (84.62) and eight girls (15.38%) were diagnosed with Asperger's syndrome. The average age of studied women was 38.77 (min=28, max=49). The study design was approved by the Bioethics Committee of the Medical University of Lublin. Approval no: KE-0254/3/2020.
The subjects also completed the survey by J. Świerczyńska, based on which information on sociodemographic data and the assessment of relations in the family were obtained. Relationship in the family was marked by the subjects on the scale from 0 to 5 points, where 0 meant "bad relationship, and "5" good.

Results
The work analyzed successively the correlation between the assessment of relations in the family, conducted on the basis of the questions from the survey by J. Świerczyńska, and the assessment of the child's disease (The Disease-Related Appraisals Scale, by S. Steuden and K. Janowski), and the symptoms of ASD in a child (The Autism Spectrum Rating Scales, by S. Goldstein and J.A. Naglieri), mothers' burnout (the Burned-Out Scale, by W. Okła and S. Steuden), stress-coping styles used by the subjects (Coping Inventory for Stressful Situations, by N.S. Endler and J.D.A. Parker), their sense of coherence (the Sense of Coherence Questionnaire SOC-29, by A. Antonovsky), a sense of social support (the Social Support Scale, by K. Kmiecik-Baran), mental resilience (the Resiliency Assessment Scale (SPP-25), by N. Ogińska-Bulik and Z. Juczyński) and mental health (the General Health Questionnaire GHQ-28, by D. Goldberg).
1. Indirect thinking and direct thinking complement each other The Spearman's Rho-correlation coefficients between the above-mentioned variables were calculated in order to determine the relationship between the assessment of family relations by mothers of children with autism and Asperger's syndrome and the assessment of the child's disease, classified on the basis of the Disease-Related Appraisals Scale by S. Steuden and K. Janowski, ( Table 1).
The obtained scores show the presence of significant correlations between the negative assessment of family relations by mothers of children with Asperger's syndrome and the assessment of the child's disease as a threat.
2. Assessment of family relations and exacerbation of symptoms of disorders belonging to the autism spectrum in the child The Spearman's-Rho correlation coefficients were calculated in order to determine correlation between the assessment of family relations by mothers of children with autism and Asperger's syndrome and the symptoms of ASD in the child, determined on the basis of the Autism Spectrum Rating Scales (ASRS) by S. Goldstein and J.A. In both studied groups of females, no statistically significant correlations were found between the assessment of family relations and the symptoms of autism spectrum disorders in the child.
3. Assessment of family relations vs. mothers' burnout The Spearman's-Rho correlation coefficients were calculated in order to determine correlations in the family by mothers of children with autism and Asperger's syndrome vs. mothers' burnout, measured with the the Burned-Out Scale, by W. Okła and S. Steuden (Table 3).
The obtained study results indicate the occurrence of significant correlations between the negative assessment of family relations and the loss of personal involvement both in the group of mothers of children with autism and with Asperger's syndrome. In the group of mothers of children with Asperger's syndrome, significant correlations were found between the negative assessment of family relations and reduced personal efficacy and emotional control.
4. Assessment of family relations vs. mothers' stress coping styles The Spearman's-Rho correlation coefficients were calculated in order to determine correlations in the family by mothers of children with autism and Asperger's syndrome and stress-coping styles, defined by the Coping Inventory for Stressful Situations (CISS) by N.S. Endler and J.D.A. Parker (Table 4).
In the group of mothers of children with autism, there is statistically significant correlation between the female subjects' positive assessment of family relations and their preference for the task-oriented style in a stressful situation.
5. Assessment of family relations vs. mothers' sense of coherence The Spearman's-Rho correlation coefficients were calculated in order to determine correlations between assessment of family relations by mothers of children with autism and Asperger's syndrome and a sense of coherence measured with the Antonovsky Sense of Coherence Scale SOC-29 (Table 5). In the group of mothers of children with Asperger's syndrome, statistically significant correlations were found between positive assessment of family relations and high manageability.
6. Assessment of family relations vs. sense of social support in mothers The Spearman's-Rho correlation coefficients were calculated in order to determine correlations between assessment of family relations by mothers of children with autism and Asperger's syndrome and a sense of social suport measured with the Social Support Scale, by K. Kmiecik-Baran ( Table 6).
The scores obtained in the group of mothers of children with Asperger's syndrome indicate statistically significant correlations between positive assessment of family relations in the studied mothers of children with Asperger's syndrome and the sense of instrumental support.
7. Assessment of family relations vs. mothers' mental resistance The Spearman's-Rho correlation coefficients were calculated in order to determine correlations between the assessment of family relations by mothers of children with autism and Asperger's syndrome and mental resilience measured with the Resiliency Assessment Scale, by N. Ogińska -Bulik and Z. Juczyński (Table 7).
In the group of mothers of children with Asperger's syndrome, statistically significant correlations were found between negative assessment of family relations and low personal competences, low tolerance of negative emotions and failures, pessimistic life attitude and inability to mobilize to cope constructively in difficult situations. In the group of mothers of children with Asperger's syndrome, significant correlations were found between positive assessment of family relations and the sense of competence, treating life as a challenge, high tolerance of failures and negative emotions, optimism and good adaptability.
8. Assessment of family relations vs. mothers' mental health The Spearman's-Rho correlation coefficients were calculated in order to determine correlations between the assessment of family relations by mothers of children with autism and Asperger's syndrome and their mental health assessed with the General Health Questionnaire GHQ-28 by D. Goldberg (Table 8).
In both groups of studied women, no statistically significant correlation was found between the assessment of family relations and symptoms of mental health disorders.

Discussion
The conducted statistical analyzes indicate the presence of significant correlations between the negative assessment of family relations by mothers of children with Asperger's syndrome and increased sense of burnout (its rates: deterioration in emotional control, loss of personal involvement, reduced personal efficacy), low sense of control, low sense of instrumental support, adaptation difficulties (its rates: a sense of lack of personal competences, low tolerance of negative emotions and failures, pessimistic life attitude, inability to mobilize to cope constructively in difficult situations) and the assessment of disorders in a child as a threat.
In the group of mothers of children with autism significant correlations were found between the negative assessment of family relations and the burnout rate -loss of personal involvement and rare use of a task-oriented strategy in a stressful situation.
All in all, the hypothesis may be formulated that the subjects' personality traits have significant influence on the positive assessment of relations in the family: the task-focused style used in a stressful situation, a sense of competence, tolerance of failures, treating life as a challenge, optimism, the ability to mobilize in the face of difficulties and high mental resilience. Social support provided to mothers of children with autism spectrum disorders also plays an important role. The studied mothers, characterized by low emotional control, low efficacy, a sense of burnout and the assessment of their child's health condition as a threat, negatively assess family relations.
The results of our study partly correspond with the opinion of the authors who believe that the ability to establish proper relations in a family with a child with Asperger's syndrome or autism depends on the family members' personality traits, the support system offered to the family, education, financial situation, relationship between spouses, family cohesion and exacerbation of symptoms of disorder in the child, parents' adaptive abilities, their stress-coping ways [18,37,38]. Pinto et al. believe that already at the initial stage of the child's diagnosis marital relationship is affected and the way the child is perceived by family members. Accepting the child and understanding his problems are necessary to regain balance and start the process of coping with this difficult situation in an adaptive, task-oriented way [39]. Parents face the challenge of recognizing and adopting new parental roles and changing the priorities adopted beforehand [39], which, in turn, affects the relationship between them. Family members' feelings at the time of getting the diagnosis may be very strong and, in particular, may be related to the lack of knowledge about the disorder, its causes, symptoms and effects. Parents may perceive the diagnosis of autism as the loss of a child [39], therefore, they may react with a sense of doubt, confusion, increased remorse, a strong sense of responsibility for the child's health condition, and they may even question their parental competences or undermine the sense of current and planned efforts in their work with the child. Pinto et al. (2016) indicated that some family members distance themselves from the child with autism and its parents, due to negative prejudices, break emotional bond with them, feel sad and disappointed [39]. Hobson et al. believe that the exacerbation of autism symptoms in the child is correlated with a lower quality of parent-child interaction [16,39]. Similarly, other authors indicate that exacerbated symptoms belonging to the autism spectrum in children co-occur with a higher level of difficulties in relations with family members [13,17]. Parents' growing concern about the child's current state and about the process of further development they will have to face in the future may contribute to their response with exacerbated depression and anxiety symptoms [40,41]. On the other hand, the outcome of the study indicates that it is not just the exacerbation of the symptoms of autism spectrum disorders in the child, but the parent's attitude towards his disease that has a significant impact on the assessment of family relations. In both groups (mothers of children with autism and Asperger's syndrome), no significant correlations were found between the assessment of family relations and exacerbations of symptoms of disorders in the child, and the studied women's mental health.
Ben Thabet i in. oraz Leshewicz i in. zwracają szczególną uwagę na problemy związane z zaburzeniami u dziecka, które dotyczą: presji, napięcia w relacjach małżeńskich, stopnia adaptacji do zaistniałej sytuacji związanej z trudnościami dziecka, satysfakcji z relacji między członkami rodziny oraz akceptacji i harmonii małżeńskiej [20,21]. Higgins i in. informują, że 41% opiekunów dzieci z zaburzeniami ze spektrum autyzmu correlation between high levels of stress in families raising a child with disorders belonging to the autism spectrum and negative marital relations [45]. In Halstead et al.'s view, better adaptability of mothers of children with autism spectrum disorders to a difficult situation is associated with their better well-being, lower loneliness level and better functioning of the family [46]. Kuru and Piyal point to the need to develop appropriate intervention programs and to direct psychological and pedagogical help to parents bringing up children with disorders belonging to pervasive developmental disorders to provide them with suitable, optimal social suport [47].

In the group of mothers of children with
Asperger's syndrome, there are significant correlations between the negative assessment of family relations and the assessment of the child's disorder as a threat and the feeling of burnout. Positive assessment of family relations by mothers is correlated with high mental resilience, a sense of instrumental support and competence.

In the group of mothers of children with
Asperger's syndrome, there are significant correlations between the negative assessment of family relations and the loss of personal involvement, and between the positive assessment of family relations and the use of the task-oriented style in stressful situations.