Experiences of Parents of Children With Autism-libre

Parents of children with autism 1

Experiences of parents of children with autism: Parenting, schooling, and social inclusion

of autistic children1

Elias Kourkoutas*, Viviana Langher**, Roberta Caldin*** Evangelia Fountoulaki*

*University of Crete **University of Rome

***University of Bologna

1 To cite this article: Kourkoutas, E., Langher, V., Caldin, R., & Fountoulaki, E. (2012). Experiences of parents of children with autism: Parenting, schooling, and social inclusion of autistic children. In K., J., Ripoll, A. L., Comunian, & C. M. Brown (Eds.). Expanding Horizons. Current research on Interpersonal Acceptance (pp. 103-125). Boca Raton, FL: Brown/Walker Press.


Abstract The purpose of this study was to reveal the impact of autism at different stages of the

childs development, on the way parents organize their family life and deal with issues related to school, professional services, and social inclusion of the disabled child. Focus groups were conducted with 24 parents of children with autism. Content analysis of parents discourse revealed the stress and troubles that families experience everyday when dealing with a child with autism, as well as the barriers they encounter in their effort to support their childs inclusion in school and society. Findings also suggest the importance of developing family-centered services that enhance parenting skills and support parents in coping with extremely distressing emotions and obstacles. Keywords: family, children with autism, social and school inclusion


Introduction

This study was designed to explore the way parents perceive and experience their childs disability. More specifically, the study aims at revealing the impact of a serious form of developmental disability (autism) on the ways parents organize their family life and deal with issues related to school and to the social acceptance (inclusion) of the disabled child. We used a qualitative methodology with a target group of parents of autistic children of different ages and various degrees of disorder severity. It provided us with insight into families concerns and needs with regard to raising a child with such disorders.

More specifically, this methodological approach sought to bring to light problems that parents face with regard to societal attitudes, teachers, and professionals working with the child. We focused on the family experiences, as well as the meaning parents attribute to such experiences (parental narrative). By using the content analysis method, we then attempted to interpret these findings in relation to the available international data and the characteristics of the cultural and educational context of Greece.

Research suggests that parents of autistic children are likely to encounter increased risks of experiencing persistent feelings of distress and sorrow. The uncertainty generated by the unpredictability of their childs future quality of life, and the stress related to the childs lack of ability to communicate or to his incomprehensible and bizarre behavior, may hinder the development of adequate parenting practices (Baker et al., 2003; Burke & Cigno, 2000; Davis & Carter, 2008; Falvo, 2005; Irish Society for the Prevention of Cruelty to Children (ISPCC) 2005; National Autism Society, 2009; Little, 2002; Powel & Gallagher, 1993; Roberts & Lawton, 2001). Parents also feel overwhelmed by the challenges of achieving the social inclusion of their child both at school and in the community.


Family and disability: Research findings and theoretical considerations Family Reactions to Disability

Inappropriate rearing practices, or extremely disadvantaged family conditions, can seriously undermine the psychosocial development of the child and, consequently, increase the risk for psychopathology (Cummings et al., 2000; Maccoby, 2000; Osofsky & Thompson, 2000; Rohner & Britner, 2002). Children with disabilities who experience significant difficulties in communicating and negotiating their needs and expectations (e.g. children with autism) encounter additional risks within family and school contexts to be victims of rejection (see Kourkoutas & Tsiampoura, 2011 for a review). Both open rejection (e.g., physical maltreatment) and covert or implicit forms of rejection may develop.

A familys reaction to the birth of a child with serious impairments depends on a variety of factors such as: a) each parents psychological state, personality and parenting skills; b) the marital relationship; c) pre-existing family structure and dynamics; d) the familys social resources; e) the fathers role/involvement; and f) the severity and type of disability (Alper, Schloss & Schloss, 1994; Berry & Hardman, 1997; Burke & Cigno, 2000; Davis & Carter, 2008; Falvo, 2005; Gallimore et al., 1993; ISPCC, 2005; Kourkoutas, 2009). Generally speaking, the families of children with severe social disabilities tend to experience more stress than those of a child with mild disabilities (Alper et al., 1994). Furthermore, when the child displays both extreme maladaptive behavior and restricted interpersonal skills, the combination may be more distressing or disturbing to a family which has few internal and external resources or has dysfunctional communication patterns (Alper et al., 1994). Therefore, in such cases the risk of overt or covert parental rejection and neglect may be seriously increased (Kourkoutas & Tsiampoura, 2011).


Many of the early studies adopted a pathological approach, taking the view that a handicapped child makes a handicapped family (Ferguson, 2002). Current research shows, however, that although families may face a great deal of stress and difficulties, they are also, to a large extent, able to deal with many of the issues raised by the fact of parenting and rearing a child with a disability, when they are adequately supported (Burke, 2008; Connors & Stalker, 2003; Ferguson, 2002; ISPCC, 2005; Sandall et al., 2006). Parents of Children with Autistic Disorders

Autism is a pervasive developmental disability that impairs the person's cognitive and emotional systems, his communication system and language skills, and his ability to relate to others (Siegel, 2008). It begins before the age of 3 and extends throughout the individual's life. Even though individuals diagnosed with an autism-spectrum disorder share a common set of behavioral characteristics, no two individuals are alike (Siegel, 2008).

Many parents have reported positive experiences about rearing a child with autism. For example, they report finding greater meaning in their own lives, and being delighted with their childs accomplishments. Despite these positive reports, substantial research evidence indicates that the parents of children with autism, especially mothers, experience greater amounts of stress and depression than do parents of children who are developing in typical ways or who have other types of developmental disorders (Falvo, 2005; Monte, & Halterman, 2007; Olsson & Hwang, 2002; Tobing & Glenwick, 2007).

In general, mothers appear to be the most affected. They may experience distress, conflicting, or even ambivalent emotions. Specifically, Gray (2003) found that mothers of children with autism experience considerable guilt and depression. Indeed, the vast majority of researchers in the past focused their attention on measuring maternal emotions, representations, beliefs, and attitudes, as it was assumed that mothers are the primary caregivers or are more


involved generally in coping with their childs disability. Thus, depression and stress have been measured extensively in mothers, and only until recently in fathers (Glidden & Schoolcraft, 2007; Monte & Halterman, 2007).

Depression is often elevated at the time of diagnosis of a childs disability but may decline substantially over time (Glidden & Schoolcraft, 2003; Glidden & Schoolcraft, 2007). Chronic sorrow and a sense of failure are emotional states often reported by many parents of autistic children (Kourkoutas & Georgiadi, 2011; Peeters, 1997).

Depressed mothers or fathers who tend to deny or underestimate their childs disability are more likely to be dysfunctional, as they are less prompt in providing the instrumental and emotional support that their children need (Burker, 2008; Kourkoutas & Georgiadi, 2011; Kourkoutas & Tsiampoura, 2011; National Research Council, 2009; Peeters, 1997; Seligman & Darling, 2008; 2000; Weissman et al., 2006). The risk of social-emotional impairments is also greater for children of depressed or dysfunctional parents, as disabled children display restricted interpersonal and communication skills and have additional needs to be educated in a stable supportive environment (Dale, 1996; Falvo, 2005; Kourkoutas & Tsiampoura, 2011; Peeters, 1996; Powers & Singer, 1996; Zipper & Simeonsson, 2004). In addition, parents of disabled children who are anxious or depressed may be either overprotective or neglectful, as they fail to properly recognize their childs needs or promote their self-competency and autonomy, both of which are essential to attain social and school inclusion (Falvo, 2005; Berry & Hardman, 1997; Kourkoutas, 2010; Kourkoutas & Georgiadi, 2011; Powers & Singer, 1996; Peeters, 1997; Seligman & Darling, 2008; 2000; Zipper & Simeonsson, 2004).

Siblings also seem affected by the disability and family difficulties do not necessarily diminish as the child grows older (Seligman, 2000). Therefore, this may complicate the relational


family dynamics and increase the risk of the autistic child being inadequately educated and supported. Risk Factors and Parenting of Autistic Children

There are high-risk factors that might induce acute or chronic stress and trauma to the parents of autistic children and, in turn, lead to dysfunctional parenting. These include: a) the ambiguity of diagnosis; b) the severity and duration of the childs disorder; c) a very low I.Q.; d) lack of congruity with the community norms, bizarre forms of communication and behavior; and, e) enduring disruptive or disorganized behaviors (i.e. self-destructive, intense tantrums).

As for family and ecological risk factors that may affect parenting, these include: a) the inadequate social inclusion of the family and lack of social support; b)extreme poverty and very low social status; c) parents psychological problems or parental psychopathology; d) dysfunctional family relational and communication patterns; e) very low quality of available psychosocial services or lack of child- and family-centered health services; and, f) low quality of the educational system and schooling (Zipper & Simeonsson, 2004).

However available data indicate that families are most affected by the multiple failures of their autistic child (see Seligman, 2000). Studies conducted in Greece on families of children and adolescents with autism have also outlined the stresses and the various difficulties these families experience on this account (Balamotis & Gena, 2008; Sinanidou, 2006).

To summarize, research evidence indicates that the families of children with autistic- spectrum disorders may face extreme challenges in providing the necessary emotional and educational environment that these children need. Therefore, they may be in need of very specific and comprehensive counseling and school-based services. Parents experiences of accompanying a child with autism through the lifespan should be taken into consideration when designing, improving, and implementing comprehensive educational and health services. The


overall emotional and representational system that families develop over time, as well as each family members reactions and ways of dealing with the childs or siblings disability, constitute important areas for research and intervention. Moreover, families are no longer viewed as isolated systems. Both the transactional and ecosystemic models, as well as the risk and protective factor model, have encouraged researchers to refine their methodologies and to adopt broader approaches to studying the family system (Fraser et al., 2004; Gallimore et al., 1993; Zipper & Simeonsson, 2004). In fact, the social ecology point of view asserts that a family can be affected by many proximal or remote factors and events, and that the family microsystem should be carefully investigated in the case of child autism (Seligman, 2000). Methodological Rationale

The aim of this research was to examine the impact of childhood autism on family as it is experienced by parents. Many authors openly criticize the existing models of approaching childhood disability and of investigating family dynamics (Barnes, 2006; Corker, 2006; Hertzman, 2002; Gerber, 2006; Kalyanpur & Harry, 1999; Oliver, 2006). It has been suggested that alternative research models are needed in order to gain a more profound and longitudinal insight into the challenges and risks encountered by the families of disabled children. Moreover, the traditional positivistic methodologies in the area of the disability have been seriously questioned, as they are considered very narrow and simplistic from a socialmodel perspective (Armstrong & Moore, 2004; Barnes, 2006; Hughes & Paterson, 2006; Mittler, 2000; Thompson, 2004). Specifically, Green and Vosler (1992), in a study of a battery of assessment instruments with two-parent families, found that quantitative assessment information was actually misleading as it did not ensure a profound knowledge of the family issues. They contended that family context is often more complex than what can be measured by quantitative research instruments (see Deacon & Piercy, 2001).


In contrast, qualitative approaches allow a more personal, in-depth investigation of individuals that provides a unique understanding of participants experiences. The case study methodology may also provide a more complete and global understanding of individuals/systems that can be studied by using flexible, long-term, and detailed procedures. The application of qualitative assessment in a real-world setting, then, assures its own built-in external validity (Goldman, 1990).

Our study rests on the assumption that the very special nature of the focus groups could allow parents to express their experience of parenting and therefore offer us their personal narrative on the individual, family, educational, and social parameters related to their childs developmental pathway. With this goal in mind, we established relationships based on trust and intimacy with the parents, encouraging them to express themselves freely during the group process. Not only do qualitative approaches endeavor to investigate objective reality, but they also attempt to outline the personal subjective perception of the social/interpersonal experience, as well as the special meanings and explanations people attribute to their experience (Willig, 2008).

To that end it was necessary to enlist experienced and skilful investigators, as well as external raters to analyze the gathered data, who would ensure the internal consistency of the approach. Investigators involved in this study had a long research and clinical experience working with families, children, and professionals in the area of disability (see Caldin, 2008; Caldin et al., 2009; Langher et al., 2010; Kourkoutas, 2011; Kourkoutas, 2010b; Kourkoutas, in press; Kourkoutas & Georgiadi, submitted). This allowed them to possess an extended corpus of research and clinical data (data extracted from intervention programs with .families of disabled children) and therefore to adequately organize and guide the investigation procedures and the focus group process.


To prevent biases related to authors personal beliefs, two prior studies using interviews and questionnaires with a small number of parents who have children with autism (who didnt participate in this research) were conducted by other researchers (Christoforidou, 2008; Tsimouni, 2006). The aim of these pilot studies was to identify topics of the family life that should be investigated in a more methodical manner. Furthermore, the development of the questions was completed from information obtained in interviews with the parents of autistic children during a counseling program founded by the European Union and organized in Crete by the Association of Parents and Caregivers of Children with Autism of Larissa. Both theoretical and empirical literature, as well as the authors clinical experience with families and children with disabilities, were used to generate questions that tapped into issues which were identified as sources of concern for the parents of children with disabilities. Issues related to family and disability have not been sufficiently examined both systematically and empirically in Greece.

It was hypothesized that autism, a pervasive developmental disorder with serious symptoms (e.g. lack of verbal communication, etc.), will have an important impact on all family members and especially on parents who are responsible for ensuring a stable and supportive environment, fulfilling the needs of all children, responding to the extra care necessary for the disabled, and dealing with professionals and the educational system. In addition, it was assumed that parents who participated in this study experienced serious difficulties in their efforts to socially empower their child, due to a variety of social barriers, the dearth of adequate and extended specialized services, the ambivalent attitude of Greek society towards disability, and the characteristics of autism as a disability (Kourkoutas, 2010a; Phtiaka, 2008; Vlachou-Balafouti, 2001).

Method Participants


A total of twenty-four parents of children and adolescents with varying degrees of autistic disorders, coming from the Central and Eastern parts of Crete, participated in the study. Twenty two families in total have participated in this research. Most families (20) were represented by one parent, who in most cases was the mother (19 families). One father came alone, and two couples came together. Two couples of the sample were divorced. The ages of children with autism ranged from 5 to 19 years, with an average age of 9 years (SD= 1.5 years). Focus Group Process

Although group discussions had a dynamic character (i.e., lively exchanges among group members), researchers were particularly attentive to allowing everyone to express their views and to share their experiences on the issues discussed. Maximizing the subjects opportunity to express a psychological phenomenon is an important procedure in reducing the risk of overgeneralization (Ratner, 1997). Group facilitators were very empathetic and encouraged the participation of parents who were hesitant to talk.

Four (4) sessions were held in total in a private space over a period of 4 months. The groups were conducted by two experienced psychologists. Each session lasted approximately two and a half hours. The first psychologists role was to promote open communication and discussion among group members. The second psychologist took on the role of interpreting and reframing the parents experiences.

Focus group discussions were audio-taped and transcribed by four university students. The transcripts were codified by two external raters in order to ensure the consistency of the data collected (Willig, 2008). The inter-rater reliability was high (Cronbachs alpha > .91).

Results Table 1 summarizes some of the themes that emerged from the analysis. They are mainly

related to source of stress and anxiety, significant barriers in their everyday life, and parents


attempts to provide adequate support for their child. However, it was not possible to include in all the issues that emerged during the focus groups.

[Insert Table 1 about here] The study revealed that the families were affected in a variety of different ways by the

childs disability and subsequent disorders (e. g. lack of adequate communication skills), as well as by a series of other factors related to social, educational, and professional institutions. Due to space limitations, we will only discuss four of the central themes. Theme 1: First period of diagnosis and parental reactions

Communicating a diagnosis of a serious developmental disorder is not an easy task. Professionals should be trained to do it in a structured manner and be receptive to the needs of parents, thereby providing families with the emotional support they need and helping parents to make the best choice for their child in the long term.

Upon receiving the diagnosis, parents may react by crying, feeling shock, devastation or helplessness, and by wanting additional information about autism (National Autism Society, 2009). In some cases it has been found that parents do not believe the diagnosis and may even become angry or question the professional's ability (Nissenbaum, Tollefson & Reese, 2002).

In our study, most parents clearly described being overwhelmed by strong negative feelings during the period immediately after the diagnosis. Many parents reported experiencing, among others, the following emotional states and reactions in the moment of the diagnosis: shock, distress, denial of the truth, guilt, terror, helplessness, depression, and emotional emptiness. They also reported contradicting feelings, such as pain and shame towards the rest of the family or their spouse. Lastly, some talked about feeling relieved in the sense that they found out that now the disorder has a name (M5).


We were completely bowled over, knocked for sixfeeling sadness, wanting to die []. You dont know how bad this isyou want to know what the future holds (Mother 9) I couldnt believe it I couldnt accept itit was too hard [] my husband and my father refused to believe it.they were reproachful of the doctorI know now that it was harder for them, as men, than for me to accept that their son is not normal []though I felt devastated for a long period.. (Mother 10) I was the only one who believed that something was wrong with my 3 and a half year-old childthe whole family and even the pediatrician were very reluctant to give me an official diagnosis .He encouraged me to wait and see the childs development over the following year in any case it was devastating when the doctor talked about a developmental disorder on the one hand it was proven that I had been right to worryon the other, it was so hard to face the facts in front of you...it is a woundthat never heals! (Mother 5) The lack of a precise and clear prognosis is an additional stressor for the families. The problem is that they dont know or they dont want to tell you about how the child will develop in the futurewill he be able to go to school? Will he be able to work or to get married? (Mother 9) You dont know which way to turnhow to find the strength to accept this illness! (Mother 5) Some parents talked about their need to find out why this had happened. For us it was very important to find out what had caused the disorder. Nobody could give us a clear answer .It was hard in the beginning to think what had gone wrong My husband had the horrifying idea that we had done something wrong on our parthe had


been absent a great deal during my pregnancy and the first months after K. was born [] He even thought that this might have provoked it. (Mother 9) You begin to think so many confusing things about the origin of the syndromeMy husband was also obsessed with finding out what was to blame...He even accused me of doing one thing or another during my pregnancyor that something was wrong with my body..!! (Mother 5) You want to knowit is very disturbing to think that something is not ok with your bodyand that you generated the disorder [] it is important to get rid of all these troubling thoughts and focus on helping the childI think this is the first step to take and to accept the disability. (Mother 10) The father and the mother (F21-M21) of a 5 year-old boy reported having experienced a

long and frustrating process in obtaining a final diagnosis. They stated that the ambiguity in the diagnosis of autism is very confusing and troubling for the parents and makes them waste time.

Consequently, the way in which a diagnosis is communicated to the parents is now considered an essential step in helping parents engage in an early intervention program and secure the maximum professional support available for their child.

In addition, many parents reported being very distressed and frustrated at the way medical staff and other professionals treated them:

We felt totally unsupported! Nothing was provided for us.very general guidelines, as well as ambiguous advice or unreliable prognoses, not based on evidence but on personal impressions. (Mother 21) Another mother (M10) reported that a doctor in the public health services, a long time

after the diagnosis, explained to them that:


[the child] has no future [] there is no point sending him to school, and that training in gardening would be an optimal solution for him. [] we couldnt believe it, we were so sad [] and finally he was wrongthis was a liethe child went to a special school and he is now able to do a lot of things [] since then weve been very happy with his progressthere are of course still a lot of things to do but [] at that time it was difficult [] we were very angry with the professionals [] we didnt feel we had any real help from them, with the exception of a speech therapist who helped us a lot. Issues related to choice of services (private or public sector, specialized or general, private

physician or hospital, psychiatrist or psychologist), how to access information about services ,and how this information is provided, are key in the establishment of a working alliance between parents and professionals (Seligman & Darling, 2008). Establishing a trusting relationship from the beginning may prove to be very comforting and reassuring for parents and helps them deal with many of the negative initial emotional reactions which are triggered by an ambiguous or partial diagnosis, or a false or incomplete prognosis.

We were lucky because we found this speech therapist who helped me in many ways and with a lot of thingshis help was really precioushe cooperated with the other professionals and with our sons teachers [] we still have regular contact with himhe supported ushe was like a psychologist to uswe still go and talk to him when we encounter difficulties...we pay him of course! (Mother 10) The lack of acceptance of autism can result from strong negative feelings caused not only

by the childs lasting and excessively troubling behavior, but also by the difficulties in communicating with the child.

Some parents of older autistic children talked about their desire in the early stages to have a normal child to love and to be loved by a joyful and responsive child. This is the most


frustrating thing in autism, as reported by a father and some other mothers. Although you end up loving this child, I believe you can never feel, at least in the beginning, like a normal parent. Accepting the disability of the child and feeling able to help him/her progress is an important step in the very long process of parenting a child with autism.

Parents highlighted the importance of doing work by themselves, as well as being supported by specialists during this adjustment period so as to adequately deal with the diagnosis of the disorder. As each family functions in its own way and requires a different amount of time to come to terms with the reality of a diagnosis, parents also find it important that specialists carefully evaluate each familys particular situation, to ensure that parents are not misunderstood and are helped in the appropriate way. Theme 2- Reorganization of family life and dynamics: Parental roles and couple relationships

Reorganizing and restructuring the family, after the diagnosis of autism, is an essential step for both the childs and the familys future. After the first shock, most parents gradually attempt to find the external or internal resources to adequately respond to their childs needs, cope with the everyday challenges, and to adjust to social reality while dealing with a variety of emotions that they experience. This may take a long time. Some parents are more resilient in facing the disability challenge. They may be more gifted or may have more internal and external resources to cope with these challenges.

It was agreed by all group participants that there is a tremendous amount of stress placed on the parents of children with autism. Parents of autistic children may have a series of conflicting tasks to assume. They may, in addition, have to parent their other children or care for their own aging parents and respond to their roles as a professional or couple.

With regard to the financial burden of autism, many parents talked about the expenses that they had, which were not always covered by public insurance. Loynes (2000) also found that the


financial impact of having a child with autism is a significant burden on families. Some parents reported that combining a professional and a parenting role of caring for a child with autism is not any easy task. Some other parents mentioned that having a job is very crucial to their psychological equilibrium and it constitutes an additional social resource and a personal refuge.

It is still very hard for us, as our child is very young (4.5 years old) [] our whole life has changed [] we have to be mature and strong to face the everyday challenges [] there are moments when Im really scared and sometimes even desperate [] on the other hand you have to be strong for the other (Father 21) Very often you are alone during the first yearsalone with your child [] you may have your husbands support but you may not [] the whole day you need to focus on the child and the autistic child is usually very demanding (Mother 3) With regard to sharing responsibilities, the following citations highlight to what degree

the traditional division of roles is still present in many families and how some women are experiencing it.

You cannot find time for you or for the couple [] youre under permanent pressure, always stressed [] you have to communicate with the child, to get to know him, to understand him, to find ways of contacting the right specialists [] for a long time youre not only a mother but also a therapist, a psychologist, a real professional [] sometimes you do this for your husband or for your other children; you have to be a psychologist to understand their reactions []usually here in Greece, men are less involved in the care of the child (Mother 7) Women in Greece are supposed to do everything [] actually theyre responsible for doing everything with the child: finding the right doctor, the right specialist; taking the


child left and right; negotiating everything with everybody and when something is wrong, its her fault. (Mother 12) In our home you find yourself accused or guilty; men have their own ways of reacting to the family responsibilities [] they prefer to do it from a distance; thats true, they prefer to let mothers get involved in everything. (Mother 14) Although most mothers agreed that men are brought up to avoid taking family

responsibilities, some of the participants pointed out that this behavior may also represent a coping mechanism to deal with unbearable feelings.

Apparently, some men refuse to get involved because they cannot stand the emotional burden of the whole thing [] Ive felt this way many times during these last years: you want to give up. (Father 22) I have accepted him the way he is; he works, he brings money home; the problem is when they dont want to do anything else or they hold us responsible for minor problems. (Mother 1) Some older parents of autistic adolescents emphasized that the familys social inclusion is

very crucial for parents themselves, as well as for the child. The parents should take measures to avoid being isolated and to focus exclusively on their child. They encouraged new parents to be particularly attentive to their social life and to maintain regular contact with neighbors, friends, relatives, and social networks. They believe that because parents of autistic children often experience prolonged sorrow and increased anxiety about their childs future, as well as embarrassment about his/her behavior in various social contexts, they are more likely to isolate themselves and to avoid regular social contact.

In our study, many parents reported having experienced such feelings and fantasies. Two of the families had been very reluctant to talk about the disability to the extended family and tried


to hide the childs disorder for a long time. Although most parents recognized that they acted this way to protect themselves, others were critical of such an attitude. Some of them believed that such behaviors revealed the parents own difficulty in accepting the disability of their child.

Parents were also very anxious about their attitudes towards their other children. Problems with other children mainly consisted of occasions when adolescent brothers and sisters refused to take any responsibility for the disabled child or refused to go out with him (because of feeling embarrassed, ashamed, etc.).

Some parents were very concerned about the possibility of overloading their other children, or neglecting them. They were unsure of how much they should ask them to get involved in the care of the disabled child. They also wondered if they could unconsciously create a climate of insecurity and transmit their own fears and anxieties to their other offspring.

When discussing the issue of burdening their other children with responsibilities or with our fears and anxieties many parents expressed that sometimes you are not aware of how much you expect from the other children and how easily you may overload them. It was also noted by one parent that we should be very careful because beneath the surface of a mature and reasonable child may be a child with unmet needs.

All parents agreed that seeking counseling for the other children is very important. As parents tend to focus more on their child with autism (parents are often absorbed by the autism (M15)), they are more likely to forget that other children have problems too (M14) and need to be adequately understood and supported. Theme 3- Managing difficult behaviors: Educating the child with autism

The most common difficulties experienced by our participants with regard to raising and educating a child with autism were the following: the critical and stereotyped behavior of the child; establishing adequate communication with the child; controlling bulimic behavior and


incorporating rules and boundaries into his everyday life; and issues related to social contacts and friendships.

For some parents, the hardest thing was to see their child being absorbed by serious stereotyped behaviors and their inability to help him open up and play in a regular manner. Many other parents also related experiences of very problematic or disruptive and uncontrolled behavior during the early years. For many of them, these periods were the most painful and critical. Some of the parents were convinced that the disruptive reactions are the result of the childs limited capacity to express himself, communicate his needs, or change things that annoy him along with an environment that cannot help him because we still cannot understand his needs or what he wants. Tantrums and aggressive behavior is also mentioned as an obstacle in the childs ability to communicate and relate to others. According to most parents these reactions occur when the child is under intense pressure or something has happened that he cannot bear. Some parents pointed out that this behavior is often misunderstood by others and jeopardizes the social acceptance of children with autism.

Overall, parents agree that when you find a good professional to help you and whom the child trusts, you can see enormous progress. The problem is that many parents think that there are no really good professionals. A mother of a 19 year-old autistic adolescent stated that very few professionals are really able to help you; now, you can find somebody who is serious and has some working experience with autism; 15 years ago it was a desert!. Another mother reported that [] actually, parents need to get support; they need to be sure about what theyre doing [] and when they decide to do something for their child or make a choice, they need somebody to help them [] parents associations could be a solution, as really good specialists are difficult to find, and many parents avoid doing work by themselves []. Others believed that [] if adequately treated, the child matures and can achieve greater control of his behavior.


A serious concern for all families with children with autism is the childs capacity to communicate. Achieving a satisfying level of communication is essential for both mothers and fathers. In our sample, only a few children and adolescents had developed the capacity to use verbal language. The majority of them communicated with non-verbal signs.

The question of whether to use signs or verbal language was another conflicting issue for parents. According to some of the parents, many specialists advocate the use of spoken language even in the case of a child who is not able to acquire this skill. This seems very difficult and unacceptable to some parents. In every case, the use of an appropriate communication strategy is source of conflict between parents and professionals.

Childrens emotionality and intelligence were two other themes that emerged in the analysis. Childrens capacity to feel and express emotions through relationships is something that, according to many mothers, requires additional attention and training. Some young parents expressed their concern about how to help their children to be more emotionally expressive. Most parents agreed that their children are able with time to feel emotions, to feel bonded to other people, and to even cry sometimes.

Low intelligence is also a factor that undermines the childs prospects. A mother (M1) stated: what was very distressing for me was the low intelligence of my child. She believed this was the reason for her daughters self-isolation. Another mother with a 12 year-old autistic child stressed parents should encourage the child to develop symbolic thinking, which is a skill that seems to be absent in autistic children. Some others believed that this is not possible and that these are guidelines that only specialists with enough knowledge can give.

The most distressing problem for all families was the possibility for the child to be socially included. For some of the parents, both deficient interpersonal skills and lack of willingness from peers to associate with children and adolescents with autism may result in social


isolation. Even those children with high intelligence are less able to maintain real friendships and get involved in peer groups. Some other parents pointed out that the existence of prejudices is the main obstacle to their childrens socialization. A few parents had sought help from specialists in order to improve their childrens social-interpersonal skills. One mother had traveled several times abroad (Italy) to specialized centers to get a holistic treatment for her daughter.

Available clinical data suggest that many families with autistic children in the area of Crete remain isolated and unsupported (Kourkoutas & Georgiadi, 2011). These families are at higher risk of developing rejective or dysfunctional patterns of interaction with their children. They are also more likely to seek scientifically unsupported therapies to helping their child or overcoming their own stresses and traumas (Kourkoutas, in press). Theme 4- Work with professionals, schooling, and social inclusion of the child with autism

Caregivers who have children with serious special difficulties interact with a variety of medical, social, and educational specialists. Specialists may range in their approach from those who adopt an all-knowing expert stance in their work with families (i.e., not recognizing the role of parents in the design and implementation of treatment plans), to those who are family-friendly and family-oriented (Block & Block, 2007; Turnbull et al., 2000). The family-oriented practitioners recognize the importance of family involvement in all phases of treatment, services, and support (Block & Block, 2007).

Professionals need to understand and to analyze in detail family attributes that reflect their cultural heritage; their particular psychosocial background; and, the parents unique internal resources and weaknesses.

In our study these two different approaches to professional work came out during the discussion, sometimes in an emotionally intense way on the part of the parents. Some parents described experiences with professionals that had worked with their children and refused to


receive them or explain anything to them about their childrens progress. By working in this way, these professionals proved to be unresponsive to the parents needs and questions, as well as to their stresses and worries. In such cases, parents feel frustrated and misunderstood, and they may end up reacting inappropriately due to their unmet emotional needs.

I remember we never had real sessions with the psychologist or with the school counselor, where we could freely talk. I mean we never had the opportunity to really discuss in depth with them some issues that were important to us. We have never been asked, for example, what we think about our childs future. My husband, I remember, always had questions but Im not sure they really wanted to give us precise answers or maybe they didnt know sometimes which was the correct answer; the problem is that parents always have questions and they always feel anxious and worry if theyre doing the right things with their child (Mother 13). I have had a similar negative experience with a speech pathologist....! The way she treated us was unacceptablevery cold, very distant! I dont know [] maybe she was a good professional but my husband believed she was not. She had a big center with a lot of children and sometimes colleagues of hers received us in her place. He insisted on moving the child away from her. We finally did it after some time as the center was located in another city. The next therapist was much more kind and supportive [] However, Im not sure she was better than the first one. I believe that with the first therapist the child had better results. (Mother 14) Some professionals are probably very reticent in providing specific guidelines on how

parents could work with the child at home. Some others are not really interested in getting parents involved in a partnership model, although parents often experience stressful fantasies


about their child progress, as well as doubts and concerns about their role. They are also eager to provide the best support to their child but do not know how.

In fact, evidence shows that parents are also likely to experience burn-out or emotional exhaustion and require emotional support from somebody else (specialists, siblings, church, friends). This was eloquently expressed by one mother in our group: [] we also need to be taken care of by somebody else so as to continue to support the child and to respond to the challenges of autism (Mother 7).

[] it was incredibleshe [the psychologist] never received us in her office to properly explain to us what she was doing with J. She probably thought that we dont have anything to do with our childs treatment and that we cannot really provide him with any support; she was always insisting on imposing limits, though she never explained to us how to do it ...!. (Mother 6) This professional stance may have a negative impact on parents perception of their own

role. I have the same feeling. In my case, even though she saw us time after time, she never really involved us in the treatment program; nor did she explain to us in detail what we should do with the child at home; we felt so bad and culpable; afterwards I realized that she was not able to see us as normal parents able to do something right. (Mother 7) Some of the parents who had experienced such situations with professionals clearly stated

that this attitude has a traumatizing effect on the way parents perceive themselves. It may also elicit conflicting emotions, quarrels and frictions between partners. The issue of the adequate training of practitioners working in the area of special education needs also came out during the discussion of this issue.


The schooling of the child with autism is another critical and important phase in the family life. The adequate schooling of the child may prove to be a key protective factor in his professional future and social inclusion, as well as in his psychosocial development and autonomy (see also MacDonald, 2004). In their attempt to help the child develop and be included in school and society, parents

also face a series of challenges with administrators, teachers, special educators, and parents of other classmates. For example, many parents reported having encountered problems when they wanted to include their child with autism in a regular school.

[] with the school senior we didnt really have a positive experience [] he was clearly opposed to the idea of placing our child in the regular school [] what bothers me about the way some teachers think and operate is that they do not really care about the children [] they dont want to work with a child theyre not trained for I can understand this but they dont even give you the chance to talk about it [] The school counselor in special education was absent! Can you believe it? There is one counselor for the whole region of Crete weve had some help from the young professionals in the Schools Diagnostic Center [KEDDY] who unfortunately are very busy and overwhelmed by teachers and parents requests [] the head of the special school is an excellent professional [] she received us very kindly, she was very positive [] she supported us in making the right decision regarding our childs schooling [] she helped us a lot (Mother 11) Parents hoped to get the best for their child in the educational and social sphere. In fact ,

some parents admitted to being afraid to place their child in a special school for reasons related to stigmatization and exclusion. Though most of them disagree, some of them still think of the special school as a kind of asylum which is not in a position to provide suitable education. Most


parents shared the view that the regular Greek school is not well enough equipped and organized to receive and include children with serious disabilities.

It is possible that the frequent attempt of parents of disabled children to include them in the regular school system reflect their profound wish to see their child having a normal and regular development.

Under no circumstances did I want to place my child in the special unit no way! [] My husband had the same opinion; we struggled for this; we knocked on a lot of doors; our child went for two years to a regular school [] we didnt want to give up but gradually we realized that the child had no future in the regular school! He was isolated and lonely [] we finally decided to place him in the special school [] I think we did the right thing, as I realized afterwards [] we also did a lot of things to organize and equip this special school adequately. As my husband was a politician, he was able to find sponsors and resources for this school [] I believe, at that time, we didnt really want to accept that our child wouldnt be able to follow the regular curriculum [] it is like you still wish to have a normal child [] Schooling is a big challenge for parents of disabled children, for many reasons! (Mother 19) It has been suggested that parents who deny their childs disability are not developing

realistic expectations of him (Seligman, 2000). Instead, they are running the risk of experiencing perpetual frustrations and failures in their attempt to provide a reliable education for their child.

I know a woman whose daughter is autistic [] she never accepted her childs disorder [] she used to go to church wishing...I dont know what, a miracle to occur? Probably! [] she refused the special schooling for her child, and as she had not been accepted in the regular school, she preferred to put her in a private kindergarten [] the child was 8 years old and was not able to go to the toilet alone [] they finally decided to put her in


the special school [] the child made spectacular progress over the next two years [] Personally, I, too, have had my struggles with the regular school system and the school counselors [] I used to feel very frustrated and angry with them [] now I know that for my twins, the special support system is more important than the regular school here in Greece which cannot provide anything really useful to them [] were obliged to face this reality ! (Mother 9) Overall, parents in our focus group very often experienced disappointment and emotional

frustration when they had to deal with social and educational services. They describe these services as complex, impersonal and unfriendly towards the family unit. Employees of these services are also described as inflexible, unable to provide any empathetic responses, and prompt to defend the interests of the services instead of trying to promote the childs rights and resolve the family problems. Many parents reported experiences with administrative and health service employees of being treated without any sensibility and care (unresponsive employees, unfriendly or impersonalized services; the mentality of many employees is shaped by the bureaucratic routine and more emphasis is placed on formal details than on the essence; they seem not to be really interested in finding a solution for the family ; often I felt like I had done something wrongand not like a citizen and a parent who is claiming the rights of his child in need; I have happened to meet employees in public services or even a teacher or a school senior who treated you with pity or made you feel like a beggar).

Some parents had also experienced very rejective or exclusionary attitudes on the part of the parents of their childs classmates or even of their neighbors. A woman from Northern Greece, who was living in Crete for some years, reported with intense feelings a series of traumatic experiences of social exclusion regarding her boy with autism. Another mother also


seemed very upset with people who still see autism as an illness and really prevented their children to associate with her disabled child.

Most parents in the group could tell stories of both direct and indirect rejection. Most of them believed that such experiences always have a disquieting effect on the childs and the familys life. Some of them believed that parents may be seriously affected by the negative attitude of others and that many mothers have suffered depressive states because of this.

A mother (M22) reported that her young Aspie child, though clever, calm, and a very good pupil, was never invited to his classmates parties. The parents of this 6 year-old boy declared themselves to be very distressed about their childs social life and the way he was forced to deal with exclusion.

Other parents have also reported that school bullying and ostracism is a very critical issue and a source of serious concern and distress. All of them pointed out that relational bullying and victimization have a long-lasting and perturbing effect on these childrens social life, as they lack the necessary interpersonal skills to cope with it. A mother (M17) reported that many children with autism are not in a position to protect themselves or even communicate their victimization experiences to their teachers. She believed that school teachers are not well trained in such issues, nor are they able to easily identify a child who is being bullied.

Discussion It is clear that childhood autistic disorders may have a significant impact on relationships

within the family such as partner relations, the parent-child relationship, and sibling relations. In fact, our findings highlight a broad range of parents responses to their childrens autism, and differing extents to which families feel the impact of autism (see also ISPCC, 2005). Dealing with autistic children who are very disruptive or have very limited communication and


adjustment skills may lead parents with fewer resources to experience acute stress or strong feelings of anxiety and frustration.

A significant finding was the low quality of the services provided to children and the intense feelings of disappointment that parents experience in their relationships with professionals. It is reasonable to believe that the parents of children with autism, as they experience high amounts of stress and anxiety, need to receive reliable support and to feel understood and "emotionally contained", especially during critical periods and transitions (Hollins & Sinason, 2000).

As also found by other researchers, the intensive nature of the caregivers role can place excessive demands on parents, which in turn can lead to a wide variety of emotional reactions including increased levels of stress and pressure and a sense of isolation (see ISPCC, 2005). It has been suggested that the ability of many families to adjust to and cope with the disability has been determined largely by the availability and quality of support (ISPCC, 2005). Several times and in various ways our participants referred to the emotional support that parents of children with autism need to receive.

In addition, parents of children with autism may foster a number of conscious or unconscious expectations and wishes regarding their childs development. The dismissal of parental expectations by professionals lacking appropriate training often leads to intense emotional frustration. Some authors interpret the parents' tendency to put the blame on others as a coping mechanism that relieves feelings of guilt (Seligman, 2000). It may also be a defense mechanism to cope with very painful or depressive feelings (Hollins & Sinason, 2000; Kourkoutas, in press).

Parents of children with high-functioning autism (HFA) may also expect their child to participate in regular schooling and experience advanced socialization. The refusal of the


educational authorities to allow a HFA child to enroll in the regular educational system, despite parental wishes, may also elicit strong emotional reactions on the part of the parents (Kourkoutas, in press; Schelles, 2007).

To sum up, participants in our study have eloquently expressed a wide range of problems encountered in parenting a child with autism. Due in part to the comforting ambience we created in the focus group, parents talked about their own families, their own ways of dealing with autism, as well as the internal difficulties and external barriers that they are experiencing in important areas of their lives (e.g. personal stress and family roles, relationships with extended family, the social life of the child, communication, intelligence and emotionality, education and management of critical/problematic behaviors, schooling and victimization, problems with siblings, quality of available services, relationships with professionals, expected specialized help, among others.)

Our study confirms the results of previous Greek studies (Balamotis & Gena, 2008; Sinanidou, 2006) about the increased stress and the type of difficulties parents experience when faced with the education, the social-emotional development, and the schooling of children with autism. More specifically, our study elicited parents responses to the question of the quality of primary services provided, and to the availability of adequate professional help, along with a number of important issues related to schooling (including, for example, the risk of bullying and victimization) and the social acceptance of their child. Regardless of the seriousness of the disorder, for most parents the issue of adequately dealing with autism and overcoming the barriers is linked to the secure availability of necessary external and internal resources.

Obviously, more rigorous research will be needed in order to investigate extensively the effects of the difficulties experienced by parents of autistic children, and the specific variables that affect parental responses and coping mechanisms.


Limitations of the study Focus groups represent an ideal qualitative approach in the investigation of the beliefs,

attitudes, and emotional experiences of relatively homogeneous groups of people, confronting the same kind of problems and difficulties in specific domains of their lives. Therefore it is a tool that can generate particular forms of knowledge and new experiences for both participants and researchers, as it allows for discussing, confronting and working through different points of view (Willig, 2008). On the other hand, an investigator or a professional may choose a qualitative assessment method that focuses on issues related to his or her particular theoretical orientation (Halvorsen, 1991). However, findings from qualitative methods are difficult to generalize. Data stemming from such studies should be complemented or contrasted with large scale quantitative studies and assessments of individual or family/systems function.

Furthermore, the very special nature of focus groups (i.e., the possibility of talking about personal experiences in a receptive and containing environment) might contribute to the intensification of parents emotions and problems. More specifically, this type of group process may elicit strong emotional dynamics that induce parents to over-dramatize the negative aspects of their experiences.

Another limitation of this study was the limited participation of fathers. This may be attributed to a number of reasons. In this particular case, it might mirror the particular role dynamics of the average Greek family, where mothers are in charge of their childs education and the responsibilities related to their treatment.

Lastly, we did not include other siblings in the focus group. Siblings could offer a different view of the way individual family members experience their siblings autism. Further research should include members of the extended family and use different methodologies that


could offer a more comprehensive view on the way autism affects family functioning and the particular coping strategies that families developed to deal with this type of disability. Conclusions

Although families of children with general disabilities mentioned many positive experiences, our participants expressed many times and in different ways their need for specialized support on an emotional level, as well as information and coaching in various areas and stages of the childs development. This is probably due to the fact that families of children with autism experience more stress and encounter additional external barriers to their childs social inclusion. Although some children with high-functioning autism (e.g., Asperger) may achieve academic success at school, their social inabilities and the awkwardness of their emotional expression are still a source of stress and anxiety for many parents.

An important suggestion from our study is that professionals can enable families to cope better with distressing internal emotions and external barriers when parenting a child with autism (Caldin, 2008; ISPCC, 2005; Kourkoutas, in press; Turnbull et al., 2006), if they provide a structured holding environment (a therapeutic space) and adequate professional coaching.

Parents report a need for adequate coaching to avoid being trapped in dysfunctional interactions with the child or the outside world. A well-organized family-centered service could help them cope with distressing and painful emotions and enhance their parenting skills. Families are more likely to better develop their own resources or find ways to overcome their internal resistances when they are positively advised and supported by professionals (see also Burke, 2008; ISPCC, 2005).

The process of adaptation and management of a childhood disability is not a linear one-dimensional phenomenon. Researchers and practitioners in the field of autism should emphasize the interactive and developmental nature of such adaptations. They should also address a variety


of interpersonal factors, such as the evaluation of a situation, and external factors, such as resources and social support (Shapiro, Blacher, & Lopez, 1998). Lastly, researchers and clinicians should develop strategies and practices to encourage families to formulate their needs, take pride in their strengths, and perceive both benefits and problems (Singer, 2002, p. 15; see also Connors & Stalker, 2003; Turnbull et al., 2006).

Available data show that effective services provided to the families of autistic children should be flexible, child- and family- oriented, promote a personalized-individualized partnership approach, use multidimensional and dynamic methods to assess families needs and strengths, and also be resiliency-oriented (Seligman & Darling, 2008; Turnbull et al., 2006). Similarly, researchers in Italy report that empowerment (resiliency-oriented) models are more effective, and the parents of disabled children declare themselves to be satisfied with this type of partnership (Frosi, Gioga & Milani, 2008). These findings seem to be in accordance with many of the expectations and suggestions reported by participants in our study.

Additionally, school plays an essential role in socially including and protecting the child with HFA from bullying and victimization. To this end, school units should develop practices aiming to support vulnerable children and families at risk in cooperation with professionals, parents, and parent-associations of children with autism or other forms of disability.

To sum up, the most important suggestion of our study is that professionals who work with children with disabilities must recognize the resources and concerns of the entire family. Professionals working in medical and educational settings historically developed a kind of tunnel visionthat is, they focused exclusively on the child as patient, student, or client and ignored the world within which the child lived (Seligman & Darling, 2008, p. 376). Evidence from contemporary research indicates that the most effective and meaningful practices are those that: a) promote an ecosystemic and partnership vision; b) include the parents in the treatment


process; c) enhance family resources; and, d) are relationship-focused (Burke, 2008; Caldin, 2008; Caldin et al., 2009; Seligman & Darling, 2008; Zipper & Simeonsson, 2004).

In fact, other studies have led to the identification of the following outcomes to assess the effectiveness of services for families with disabled children: (a) families understand their child's strengths, abilities, and special needs; (b) families know their rights and advocate effectively for their child; (c) families help their child develop and learn; (d) families have support systems; and, (e) families are able to gain access to desired services and activities in their community (Bailey et al., 2006). These outcomes provide a framework by which the state and the local authorities could document whether early intervention and preschool programs are providing demonstrable benefits for families.


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Table 1 Issues regarded by parents as sources of stress and anxiety, or unmanageable situations (N=24) Period before the diagnosis Emotional experience of diagnosis initial reactions Issues concerning bureaucracy to receive medical attention Availability of support for parents, and primary intervention services Communication and relationship with the child during the preschool years Management of difficult behaviors and situations occurring in everyday life Familys and individuals coping mechanisms Quality of parenting toward other children/siblings Choice of professional support / type, duration, and quality of required services Integration/inclusion of the autistic child in school and society Choice of school, education system, expected academic goals, and relationship with schools Organization of family and couple life Fathers roles Childrens victimization at school Issues related to leisure / Responsibility for the child by other family members or by caregivers outside the family

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