**1. Introduction**

Autism spectrum disorder (ASD) is a developmental disorder of organic origin characterised by impairment and deficits in social interaction and communication as well as repetitive and restricted patterns of behaviour [1]. ASD can manifest with very different degrees of severity, but most children with autism have special needs in all aspects of their development and in all contexts. Associated problems such as intellectual deficit, sensory issues, problems with eating and sleeping and behavioural problems are also common in ASD and may cause as much impairment as the core features of the disorder [2-5].

Therefore, autism is considered one of the developmental disorders that has the greatest impact on the family. Raising and caring for a child with autism is a daunting and permanent challenge for parents and primary caregivers. Parents often need to adapt their professional lives and relationships in order to find appropriate solutions that are suited to the specific needs of their child [6]. A large number of studies have consistently found that parents of children with ASD have higher levels of stress, anxiety and depression than parents of typically developed children or children with other disorders [7-13].

However, previous research also reports large differences in the adaptation of families to ASD. Despite the difficulties of caring for a child with ASD, many families demonstrate resilience andachieve a goodfit between the needs ofthe child withASDandthe needs ofthe otherfamily members [14, 15]. Various factors, including social support, the characteristics of the child with ASD, coping strategies and the perception of the problem may be involved in the family's adaptationtoASDandcouldexplainthedifferences indegree ofresilience. Social support(both formal and informal) appears to be a protective factor that relieves parental stress [16-19] and increases personal well-being and family quality of life [20-22]. With regard to the characteris‐ tics of children with ASD that relate to family stress, many studies suggest that behaviour

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problemsare themainpredictorofparental stress ratherthanthe severityofthedisorder[23-28]. Parents' coping strategies also prove relevant. Parents who adopt coping strategies of active avoidance (denial, distraction and guilt) report more stress than do those who adopt positive andproblem-focusedstrategies[29-32].Parents'perceptionsoftheproblemandhowtheydefine for themselves the state of their lives also appear to be significant predictors of parents' adaptation. A negative perception of the situation as a catastrophe and feelings of guilt about having caused their child's problems are main predictors of stress for parents of children with intellectual disabilities [33] and mothers with children with ASD [34], whereas positive perceptionsordefinitionsofthe situationasmanageable,understandable andmeaningful seem to protect families from stress and improve their welfare [7, 10, 22, 31, 35, 36].

However, very little is known about the nature and impact of positive perceptions of the situation, because of the dominance of research focused on the negative consequences of ASD. The positive orientation of research on the impact of disability on families with children with ASD and the study of the factors that explain parents' psychological well-being are very new and are progressing only slowly.

A review of the studies on this subject suggests that most research on the situation of parents of children with intellectual disabilities has focused on the analysis of the negative aspects (such as stress, anxiety or depression) and possible related factors [37, 38]. This negative perspective is even more evident in research focused on parents of children with ASD [39]. The idea that caring for a disabled child may have a positive influence on parents and families is not incorporated into the dominant trend in research.

Helf and Glidden [37] conducted a review of published research (between 1970 and 1990) on the adaptation of families of children with intellectual disabilities. Independent judges rated the degree of negativity or positivity reflected in the approach, method and discus‐ sion of research. They considered any reference to benefits the family or any of its members had experienced as a result of having a child with disabilities as positivity. Indicating that the family or its members had suffered negative consequences such as anxiety, depres‐ sion, frustration, loss, illness, neuroticism, stress and others was considered an expression of negativity, particularly when these references were not balanced by the inclusion of positive concepts or reactions such as adequate coping, family strength, positive adjust‐ ment, recovery or reward. The study concluded that although there has been some decrease in the negativity in the study of family adjustment over the past 20 years of research (e.g., terms such as "disaster" or "permanent damage" present in the findings of studies in 1970s disappear in studies of 1980s and 1990s), this decrease has not been accompanied by a concomitant increase in positivity. The negative approach in studies on adjustment of families with a member with intellectual disabilities still dominated in the 1990s. Accord‐ ing to Helfin and Glidden, "In the overwhelming majority of the articles reviewed, the authors failed to mention any positive outcomes of having a child with a developmental disability" [37, p. 461].

As these authors point out in the introduction to their work [37], and others [14, 40] also assume, various reasons may explain the predominance of studying the negative effects of having a child with a developmental disability. The influence of researchers with a clinical orientation whose fundamental experience is related to families with difficulties who look for their assistance, coupled with the challenges of applied research that must evaluate and justify an investment in resources and specific supports for these families, is strong. All of these reasons are honest and understandable, and the results of these studies have certainly provided great help in the form of psychological interventions and support for these families; however, these lines of research have also had some less-than-positive effects.

problemsare themainpredictorofparental stress ratherthanthe severityofthedisorder[23-28]. Parents' coping strategies also prove relevant. Parents who adopt coping strategies of active avoidance (denial, distraction and guilt) report more stress than do those who adopt positive andproblem-focusedstrategies[29-32].Parents'perceptionsoftheproblemandhowtheydefine for themselves the state of their lives also appear to be significant predictors of parents' adaptation. A negative perception of the situation as a catastrophe and feelings of guilt about having caused their child's problems are main predictors of stress for parents of children with intellectual disabilities [33] and mothers with children with ASD [34], whereas positive perceptionsordefinitionsofthe situationasmanageable,understandable andmeaningful seem

However, very little is known about the nature and impact of positive perceptions of the situation, because of the dominance of research focused on the negative consequences of ASD. The positive orientation of research on the impact of disability on families with children with ASD and the study of the factors that explain parents' psychological well-being are very new

A review of the studies on this subject suggests that most research on the situation of parents of children with intellectual disabilities has focused on the analysis of the negative aspects (such as stress, anxiety or depression) and possible related factors [37, 38]. This negative perspective is even more evident in research focused on parents of children with ASD [39]. The idea that caring for a disabled child may have a positive influence on parents and families

Helf and Glidden [37] conducted a review of published research (between 1970 and 1990) on the adaptation of families of children with intellectual disabilities. Independent judges rated the degree of negativity or positivity reflected in the approach, method and discus‐ sion of research. They considered any reference to benefits the family or any of its members had experienced as a result of having a child with disabilities as positivity. Indicating that the family or its members had suffered negative consequences such as anxiety, depres‐ sion, frustration, loss, illness, neuroticism, stress and others was considered an expression of negativity, particularly when these references were not balanced by the inclusion of positive concepts or reactions such as adequate coping, family strength, positive adjust‐ ment, recovery or reward. The study concluded that although there has been some decrease in the negativity in the study of family adjustment over the past 20 years of research (e.g., terms such as "disaster" or "permanent damage" present in the findings of studies in 1970s disappear in studies of 1980s and 1990s), this decrease has not been accompanied by a concomitant increase in positivity. The negative approach in studies on adjustment of families with a member with intellectual disabilities still dominated in the 1990s. Accord‐ ing to Helfin and Glidden, "In the overwhelming majority of the articles reviewed, the authors failed to mention any positive outcomes of having a child with a developmental

As these authors point out in the introduction to their work [37], and others [14, 40] also assume, various reasons may explain the predominance of studying the negative effects of

to protect families from stress and improve their welfare [7, 10, 22, 31, 35, 36].

and are progressing only slowly.

52 Autism Spectrum Disorder - Recent Advances

disability" [37, p. 461].

is not incorporated into the dominant trend in research.

Research paradigms and interventions both reflect and influence each other. If we only focus on risks and problems and do not formulate hypotheses about family strengths and if we do not develop sensitive instruments for measuring positive experiences of families, we will hardly detect the existence of these strengths. As Antonovsky [40] stated over 20 years ago, if our research questions are formulated negatively and only ask about the negative, we are not very likely to find positive answers.

When research provides an opportunity to make the positive aspects of these situations manifest, those positive aspects become clear. Parents of children with disabilities do not dwell only on difficulties of caring for their children with special needs, but they also speak of the positive impact that having a child with a disability has on their personal growth and family cohesion [14, 41-48].

As Hastings and Taunt [42] reported in their review of research on positive perceptions of disability in the family, one of the first and most relevant documents in this regard is the report by Mullins [49]. Mullins analysed the content of 60 books written by parents of children with different disabilities. He found that parents report that their child's disability involves both strong demands and stress and enrichment and expansion of the meaning of their lives. These conclusions are borne out by a further analysis of texts produced by parents of children with disabilities by Hornby [50].

One of the most important studies on the positive contributions of children with disabili‐ ties to the family was conducted by Behr, Murphy and Summers [51]. This research was the basis for the construction of the four scales that make up the Kansas Inventory of Parental Perceptions (KIPP), which includes the specific assessment of positive contribu‐ tions (Positive Contribution Survey). A qualitative analysis of interviews with 28 families led the researchers to generate a database of 206 items related to the perception of positive contributions that they pooled into 16 categories and five factors. A validation study with 1,262 families with disabled children showed new factors that were not identified in the previous phase. Thus, the Positive Contributions scale was formed, comprising 52 items corresponding to eight dimensions. Positive contributions were defined as a) learning through experience with special problems in life; b) happiness and fulfilment; c) personal strength and family closeness; d) understanding life's purposes; e) personal growth and maturity; f) awareness of future issues; g) expanded social network; g) career or job growth; and h) pride and cooperation. In a subsequent study that factor analysed this scale [52], these dimensions were grouped into three distinct factors of positive contributions that have become a benchmark for future research: 1) happiness and fulfilment, 2) strength and family closeness, and 3) personal growth and maturity.

Kausar, Jevne and Sobsey [44] conducted a qualitative study of interviews with 19 parents of children with developmental disorders. Most parents reported that accompanying their disabled child throughout their life became a positive and empowering experience for their own lives. Parents reported that the birth of their child with disabilities led them to redefine their role as parents, giving them a new sense of strength and meaning. They also reported that having a positive approach (e.g., addressing their child's achievements and abilities rather than disabilities) increased their hope and determination to seek and find resources and solutions to better meet the needs of their child. The initial experience was described as a frustrating blow, but parents also described how, over time, this experience evolves into a fortress of personal growth and a new meaning of life. Hope appeared linked to a realistic acceptance of the conditions of their disabled child.

These findings about the positive evolution of parents in their perception of the impact of disability on themselves and their family are reaffirmed in the results of a longitudinal study [48]. This study found that while positive perceptions appeared earlier in mothers than in fathers, both parents converged over time in recognition of the positive impact of childhood disability on family life. Additionally, the study of Bayat [14] on the resilience of families with children with autism reported a positive evolution among most parents. This study suggested that a positive change of perspective occurs among parents two years after receiving their child's diagnosis of autism. This change makes them recognise within themselves a new sense of life and makes them more aware of difficulties and differences, stronger and more patient, and more appreciative of small pleasures in their life. The stories of parents in this study further demonstrate that they consider their child with disabilities to have been a source of cohesion and family unity.

This transformation of initial negative reactions into feelings of acceptance and strength and the joy and satisfaction that accompany witnessing their child's accomplishments [43] have been shown in other studies to support parents for the exercise of their role as caregivers Hastings et al. [52] found that positive perceptions of mothers of children with intellectual disabilities were associated with a restructuring of their coping strategies. The authors concluded that the perception of positive contributions can functions as a mechanism to cope with stress and the demands of raising a child with intellectual disabilities. Werner and Shulman [53] reported that giving a positive meaning to the care that parents give to their children, along with self-esteem and psychosocial support, plays a moderating role in the effect of the stigma of disability on psychological well-being for mothers of children with intellectual disability.

Although the findings are still scarce, the few studies we could find on the role of the perception of positive contributions to the psychological adaptation of parents of children with ASD also present suggestive evidence of the protective role of positive perceptions.

Kayfith, Gragg and Orr [54] analysed the relationship between positive experiences and parental stress in 23 pairs of mothers and fathers with school-aged children with ASD.

While mothers reported more positive perceptions than fathers, these perceptions were negatively related to stress for both mothers and fathers. Data suggesting greater per‐ ceived positive contributions among mothers also appeared in a study using a sample from the Spanish population (24 fathers and 33 mothers of children with ASD) [55]. This study reported a negative relationship between perceived positive contributions and anxiety in mothers. Mothers who perceived more positive contributions of their child with ASD had lower levels of anxiety than did mothers who reported fewer perceived positive contribu‐ tions.

have become a benchmark for future research: 1) happiness and fulfilment, 2) strength and

Kausar, Jevne and Sobsey [44] conducted a qualitative study of interviews with 19 parents of children with developmental disorders. Most parents reported that accompanying their disabled child throughout their life became a positive and empowering experience for their own lives. Parents reported that the birth of their child with disabilities led them to redefine their role as parents, giving them a new sense of strength and meaning. They also reported that having a positive approach (e.g., addressing their child's achievements and abilities rather than disabilities) increased their hope and determination to seek and find resources and solutions to better meet the needs of their child. The initial experience was described as a frustrating blow, but parents also described how, over time, this experience evolves into a fortress of personal growth and a new meaning of life. Hope appeared linked to a realistic

These findings about the positive evolution of parents in their perception of the impact of disability on themselves and their family are reaffirmed in the results of a longitudinal study [48]. This study found that while positive perceptions appeared earlier in mothers than in fathers, both parents converged over time in recognition of the positive impact of childhood disability on family life. Additionally, the study of Bayat [14] on the resilience of families with children with autism reported a positive evolution among most parents. This study suggested that a positive change of perspective occurs among parents two years after receiving their child's diagnosis of autism. This change makes them recognise within themselves a new sense of life and makes them more aware of difficulties and differences, stronger and more patient, and more appreciative of small pleasures in their life. The stories of parents in this study further demonstrate that they consider their child with disabilities to have been a source of cohesion

This transformation of initial negative reactions into feelings of acceptance and strength and the joy and satisfaction that accompany witnessing their child's accomplishments [43] have been shown in other studies to support parents for the exercise of their role as caregivers Hastings et al. [52] found that positive perceptions of mothers of children with intellectual disabilities were associated with a restructuring of their coping strategies. The authors concluded that the perception of positive contributions can functions as a mechanism to cope with stress and the demands of raising a child with intellectual disabilities. Werner and Shulman [53] reported that giving a positive meaning to the care that parents give to their children, along with self-esteem and psychosocial support, plays a moderating role in the effect of the stigma of disability on psychological well-being for mothers of children with intellectual

Although the findings are still scarce, the few studies we could find on the role of the perception of positive contributions to the psychological adaptation of parents of children with ASD also

Kayfith, Gragg and Orr [54] analysed the relationship between positive experiences and parental stress in 23 pairs of mothers and fathers with school-aged children with ASD.

present suggestive evidence of the protective role of positive perceptions.

family closeness, and 3) personal growth and maturity.

54 Autism Spectrum Disorder - Recent Advances

acceptance of the conditions of their disabled child.

and family unity.

disability.

Hastings et al. [56] attempted to identify possible predictors of perceived positive contributions in 41 pairs of parents of preschool children with autism. Their results indicated that mothers reported greater perceived positive contributions than fathers, and none of the characteristics of children evaluated in the study (symptoms of autism, behaviour problems and adaptive behaviours) proved to be a significant predictor of perceptions of positive contributions in fathers or mothers.

In summary, review of the literature allows us to state that research on the positive aspects of living with a child with intellectual disabilities in the family is still in the minority compared to the predominance of research focusing on the negative impact of disabilities. This shortage is even more striking in the case of specific studies on the impact of ASD and points to significant gaps in our knowledge about the role that positive contributions can play in supporting the psychological adjustment and emotional well-being of parents who face the challenge of living with a child with autism.

Another feature of the research in this area is that most of the studies are based on the responses of mothers, both because of mothers' greater availability and because mothers are often assumed to be the primary caregiver for children with disabilities [57]. While we accept that this assumption might be largely true, it is also necessary to note that fathers are generally more involved in raising their children in recent years than they were in previous generations. Many studies found that mothers have higher levels of stress than fathers [3, 58-61], but some recent studies have detected comparable levels of anxiety [30] and no differences in family quality of life [62, 63] among mothers and fathers of chil‐ dren with intellectual disabilities.

We consider it important to include fathers as participants in studies on the impact of ASD in the family and recommend that they be represented with appropriately sized samples. As noted by other authors [64], possible discrepancies in the results from different studies comparing the psychological adjustment of mothers and fathers may be related not only to the historical timing of the research but also to methodological variability. In most comparative research, the number of fathers in the study is usually very small, both in absolute terms and in relative terms compared with the number of mothers.

Research on factors related to the psychological well-being of parents (mothers and fathers) who face the challenge of caring for a child with developmental disabilities is doubly important. A better understanding of the factors related to psychological well-being among parents would allow us to design guidelines for psychological support for families and orientation guidelines for the different professionals involved in the care of the child. Parents themselves are worthy of the best and most effective psychological support that professionals can provide to promote parents' quality of life and well-being. Research has shown that parents can obtain significant benefit from psychological support to face the challenge of caring for their child with special needs [65-70]. It is also important to remember that the psychological well-being of parents affects the exercise of their paren‐ tal role and, therefore, contributes to conditions that support the child's development and welfare [71, 72].

This review allows us to justify the pertinence of a study with the primary aim of analysing the relationship between parents' perceived positive contributions of raising a child with ASD and their psychological well-being and perception of family quality of life. The complexity of parents' psychological adaptation processes leads us to propose a complex design that include other variables to obtain the most comprehensive information about possible intervening factors, the relationship among these factors, and the relative position that positive contribu‐ tions could have on predictive models of parental well-being. An *ex post facto* design was applied with a wide sample of parents of children diagnosed with ASD (127 mothers and 90 fathers) and the following study variables:


Considering the results of the research reviewed above, the following hypotheses are formu‐ lated:

