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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.
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Parents of children with autism 2
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
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Parents of children with autism 3
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.
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Parents of children with autism 4
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).
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Parents of children with autism 5
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 care-
givers or are more
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Parents of children with autism 6
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
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Parents of children with autism 7
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
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Parents of children with autism 8
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).
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Parents of children with autism 9
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.
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Parents of children with autism 10
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
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Parents of children with autism 11
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
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Parents of children with autism 12
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).
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Parents of children with autism 13
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
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Parents of children with autism 14
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:
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Parents of children with autism 15
[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
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Parents of children with autism 16
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
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Parents of children with autism 17
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
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Parents of children with autism 18
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
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Parents of children with autism 19
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
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Parents of children with autism 20
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.
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Parents of children with autism 21
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
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Parents of children with autism 22
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
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Parents of children with autism 23
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
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Parents of children with autism 24
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.
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Parents of children with autism 25
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
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Parents of children with autism 26
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
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Parents of children with autism 27
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
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Parents of children with autism 28
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
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Parents of children with autism 29
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
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Parents of children with autism 30
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.
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Parents of children with autism 31
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
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Parents of children with autism 32
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
-
Parents of children with autism 33
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
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Parents of children with autism 34
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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Parents of children with autism 35
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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