Beruflich Dokumente
Kultur Dokumente
University of Crete
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University of Rome
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University of Bologna
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. 103125). 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.
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.
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
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.
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).
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.
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
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