Research in Autism Spectrum Disorders 4 (2010) 653–660

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Research in Autism Spectrum Disorders

Self-reported needs and expectations of parents of children with autism

A R T I C L E I N F O A B S T R A C T

Article history: Many parents of children with autism spectrum disorders (ASD) participate in support
Received 17 December 2009 groups, but very few studies have explored their motives to do so. The present study aims
Accepted 5 January 2010 to explore the self-reported needs and expectations that parents express according to their
gender and education and according to the age and gender of their child with ASD. The 299
Keywords: parents (72 fathers and 227 mothers) of children who were diagnosed with ASD were aged
Autism spectrum disorders
from 27 to 60 years old (with mean age = 46 years and 8 months). They were asked to
Parents
complete an anonymous open-ended questionnaire during one of their support group’s
Support groups
Expectations meetings. The self-reported needs and expectations that parents expressed differed
Self-reported needs significantly according to their gender and education, as well as the age and gender of their
child with ASD. These findings should be taken into consideration when organising and
running support groups for parents of children with ASD.
ß 2010 Elsevier Ltd. All rights reserved.

Autism is a pervasive developmental disorder characterized by restricted and repetitive interests and activities,
communication impairments, and atypical social interaction skills (American Psychiatric Association, 2000), which often
result to challenging or undesirable behaviours (Randall & Parker, 1999). Therefore, parents of children with autism
spectrum disorders (ASD) exhibit more stress than parents of typically developing children (Hoppes & Harris, 1990;
Konstantareas & Papageorgiou, 2006; Rodrigue, Morgan, & Geffken, 1990; Sharpley & Bitsika, 1997) or children with other
developmental disorders, such as Down Syndrome (Sanders & Morgan, 1997).
The levels of stress that parents of children with autism experience may be affected by the resources available to them
(White & Hastings, 2004), such as social support (Beresford, 1994; Freedman & Boyer, 2000). Parents who receive adequate
social support can adapt more successfully to the difficulties associated with raising a child with autism (Fisman & Wolf,
1991; Henderson & Vandenberg, 1992; Konstantareas & Homatidis, 1989; Sanders & Morgan, 1997; Siklos & Kerns, 2006).
Social support has been defined by Cobb (1976) as information that makes the individual believe that he/she receives care
and love and that he/she is valued and esteemed; social support plays an important role in a network of mutual obligation
and communication.
Social support entails both functional aspects of social interaction and structural characteristics of social interaction
(Huws, Jones, & Ingledew, 2001). Social support may be available through: (a) spousal support or satisfaction with the
marital relationships (Herman & Thompson, 1995; Konstantareas & Homatidis, 1989; Sloper, Knussen, Turner, &
Cunningham, 1991; (b) support from extended family members, such as grandparents (Hastings, 1997); (c) support from
available respite care services (Chan & Sigafoos, 2001); and (d) support through informal sources, such as friends and

* Corresponding author. Tel.: +30 2310269095; fax: +30 2310269095.

1750-9467/$ – see front matter ß 2010 Elsevier Ltd. All rights reserved.
doi:10.1016/j.rasd.2010.01.001
654 V. Papageorgiou, E. Kalyva / Research in Autism Spectrum Disorders 4 (2010) 653–660

religious groups (Hastings & Johnson, 2001; Salovita, Italinna, & Leinonen, 2003) or parents of children with disabilities who
form support groups (Huws et al., 2001; Smith, Gabard, Dale, & Drucker, 1994).
Parent support groups are designed to provide mutual support and friendship and to gather and distribute information
regarding the prevalent disability (Rawlins & Horner, 1988); they do not usually train parents to act as therapists of their
children with developmental disabilities (Smith et al., 1994; Tellen, Herzog, & Kilbane, 1989). Many support groups provide
emotional support in combination with educational information regarding the shared disability (Betz, Unger, Frager, Test, &
Smith, 1990), while others may provide group-therapy type support (Weissbourd & Kagan, 1989). Parents who participate in
support groups experience less child-related stress and reduced feelings of social isolation (Bennett & De Luca, 1996; Tellen
et al., 1989), which in turn foster more positive mother–child interactions, as explained also by the double ABCX model
(McCubbin & Patterson, 1983).
Although several studies have researched the types of social supports that are effective in parenting a child with ASD
(Fisman & Wolf, 1991; Konstantareas, 1991; Konstantareas & Homatidis, 1989; Sanders and Kerns, 1997; Siklos & Kerns,
2006), they have largely overlooked the influence of important variables, such as the severity of the child’s disability and
the child’s age, that can moderate the effectiveness of social support (White et al., 2004). Moreover, very few studies
have examined the self-reported needs of parents who take part in support groups (Siklos & Kerns, 2006), as well as the
reasons and expectations from their participation (Bennett & De Luca, 1996). Indeed, most knowledge about parent
support groups derives from ‘‘conventional wisdom’’ (Koroloff & Friesen, 1991). Therefore, the aim of the present study
was to explore the self-reported needs of parents who participate in support groups and the expectations that parents
have from support groups according to their gender and education and according to the age and gender of their child
with ASD.

1. Method

1.1. Participants

The participants of the present study were 299 parents of children who were diagnosed with autism spectrum disorders.
There were 72 fathers and 227 mothers with their age ranging from 27 to 60 years old (with mean age = 46 years and 8
months). More than half of the parents (58.9%) were graduates of secondary education and the rest (41.1%) held a university
degree. Most of the parents were not employed (35.1%), almost one third (30.1%) were public employees, 19.7% were private
employees, and 15.1% were self-employed. The majority of the parents (80.6%) had a boy who was diagnosed with ASD either
by the local educational authority or by another public service (e.g., hospital), while the rest 19.4% had a girl diagnosed with
autism by the same agencies. Almost 3/4 of the children (73.6%) attended special schools, 15.4% attended inclusion classes,
and only 11% were in mainstream schooling. More than half of the parents (57.2%) had children attending primary school and
the remaining 42.8% attended nurseries or other preschool settings. Only 70 parents (23.4%) reported that they did not
provide any extra support for their child with ASD outside school, while the remaining 76.6% said that they took their
children to speech therapists, occupational therapists, and psychologists or that they had some help for their child at home.
All the parents who participated in this study were members of parent support groups from every prefecture of Greece—so,
the sample was representative of the entire Greek population of parents of children diagnosed with ASD who are members of
support groups.

1.2. Material

The parents were asked to complete a questionnaire that included some questions regarding demographic data: their
gender, age, education, and profession, as well as the gender, age, type of education and extra support for their child with
ASD. Then they were asked to answer some open-ended questions regarding the main problem that was faced by the child
with ASD and the family as a whole, the perceived reaction of the family, social, and work environment towards the child
with ASD, the reason why the parents participated in support groups, and the expectation that they had of these groups. As
far as the coding system of the open-ended questions was concerned, each question was coded independently. The codes for
these questions were identified from a preliminary analysis of 70 questionnaires, and their key categories were extracted
and examined for common themes before they were classified into categories. The resulting categories were mutually
exclusive and ambiguous answers were discussed between the researchers in order to decide on the allocation to a category.
Forty questionnaires were randomly selected and coded independently by the authors and the mean Cohen’s K reliability
was satisfactory (90%).

1.3. Procedure

The parents of children with ASD who formed the sample of the present study were contacted through the parent support
groups to which they belonged. They were given a letter during one of their meetings that explained the purpose of this study
together with the questionnaire that they were asked to complete and return to the researchers using the self-addressed
envelope that was enclosed. Out of the 340 parents who were contacted initially, 299 returned completed questionnaires;
the return rate (87.9%) was considered very satisfactory.
 V. Papageorgiou, E. Kalyva / Research in Autism Spectrum Disorders 4 (2010) 653–660 655

Table 1
The problems that children with ASD face according to their parents.

Problems %

Communication (e.g., ‘‘he cannot talk’’, ‘‘I do not understand what he say’’) 35.1
Social (e.g., ‘‘he has no friends’’, ‘‘her classmates do not invite her to their houses’’) 17.1
Self-help skills (e.g., ‘‘he is not toilet trained’’, ‘‘he cannot feed himself’’) 16.1
Educational (e.g., ‘‘she does not learn anything at school’’, ‘‘he cannot do his homework alone’’) 14.4
Behavioural (e.g., ‘‘he is very aggressive without any reason’’, ‘‘she tantrums a lot’’) 10
Self-occupation (e.g., ‘‘he stims a lot when he is alone’’, ‘‘she does not play on her own’’) 7.3

Table 2
The problems that families of children with ASD face according to their parents.

Problems %

Communication (e.g., ‘‘we cannot understand what he wants’’, ‘‘he does not share his thoughts’’) 28.1
Behavioural (e.g., ‘‘he hits his brother all the time’’, ‘‘we cannot sleep at night’’) 25.8
Practical (e.g., ‘‘no one will babysit for him’’, ‘‘it is hard to give him a bath; he won’t stay still’’) 15.7
Psychological (e.g., ‘‘we are under a lot of stress’’, ‘‘I am constantly fighting with my husband’’) 15.7
Social (e.g., ‘‘we cannot go anywhere with him’’, ‘‘his siblings cannot bring friends at home’’) 9
Financial (e.g., ‘‘I need to work 2 lobs to pay the therapies’’, ‘‘I do not have money for my needs’’) 5.7

2. Results

The data processing revealed the main problems that were faced by the child with ASD and the family as a whole, the
perceived reactions of the family, social, and work environment towards the child with ASD, the reasons why the parents of
children with ASD participated in support groups, and the expectations that they had of these groups. Analysis of the
resulting categories in the open-ended questions using chi-square showed that there were some differences among mothers
and fathers; high school and university graduates; parents of boys and parents of girls with ASD; and parents of younger and
parents of older children with ASD. No differentiations were found according to the profession of the parents and the type of
schooling of their child with ASD.

2.1. Thematic analysis of open-ended questions

The most common problem that children with ASD and their families face, according to the participants, is inadequate
communication, while the rest of the problems differ as can be seen in Tables 1 and 2.
The majority of parents (48.2%) reported that their family environment accepted their child with ASD (e.g., ‘‘my parents
help me a lot with my child’’, ‘‘my sister loves my son with autism more than hers’’), 28.7% claimed that their family members
avoided/rejected them (e.g., ‘‘they have asked us not to visit their house anymore’’, ‘‘they keep finding excuses for not coming
to our house’’), and 23.1% reported lack of understanding (e.g., ‘‘my mother keeps asking me why my son doesn’t look at her
when she talks to him’’, ‘‘my parents do not understand why I let my son cry instead of giving him what he wants’’).
The reaction of the social environment was somewhat more negative than that of the family environment, since almost
the same percentage of parents reported acceptance – 39.8% (e.g., ‘‘our friends love us and our child’’, ‘‘when we go out,
strangers try to accommodate our needs’’) and avoidance – 38.5% (e.g., ‘‘the only contact we have with our friends is only via
phone’’, ‘‘other mothers do not allow their children to befriend my son’’). The remaining 21.7% of the parents reported lack of
understanding by their social environment (e.g., ‘‘our neighbours complaint all the time about the noise that our daughter
makes’’, ‘‘when we go out, strangers blame us for the temper tantrums that our child throws; they believe that we are bad
parents’’).
As far as the working environment was concerned, most parents (39.1%) claimed that their colleagues accepted their child
with ASD (e.g., ‘‘my boss allows me to leave my work a bit earlier in order to pick up my child from school’’, ‘‘my colleagues
invite my son to their children’s birthday parties’’), while more than one third (33.1%) had not informed their colleagues
about their child with ASD (e.g., ‘‘I do not need their pity, so they do not need to know’’, ‘‘they do not discuss the problems of
their children, so why should I?’’). Some parents (18.4%) reported lack of understanding on behalf of their colleagues (e.g.,
‘‘they do not understand why I get to leave earlier on some occasions’’, ‘‘they believe that I am using my child in order to do
less work’’) and a few parents (9.4%) said that their colleagues avoided them (e.g., ‘‘some colleagues do not want to work with
me’’, ‘‘when some colleagues go out, they never invite me to join them’’).
The main reason why most parents participate in support groups (64.5%) was that they wanted to be briefed on the new
developments in the area of ASD (e.g., ‘‘I will meet experts in the area of ASD and learn new things’’, ‘‘I want to know all about
the new treatments that are out’’), followed by practical support (19.5% – e.g., ‘‘I want to learn how to stop his horrible
temper tantrums’’, ‘‘get my child to use the toilet and to eat on his own’’). An equal amount of parents participated because
they wanted to meet other parents of children with ASD (8% – e.g., ‘‘I want to see how others parents cope with behavioural
656 V. Papageorgiou, E. Kalyva / Research in Autism Spectrum Disorders 4 (2010) 653–660

problems’’, ‘‘it is good to talk to people who go through what you are going through’’) or because they needed psychological
support (8% – e.g., ‘‘I need someone to tell me that I am doing the right thing, because I am about to have a nervous
breakdown’’, ‘‘to learn how to cope with my stress and my feelings of guilt and inadequacy’’).
Parents of children with ASD have different expectations from the support groups; most parents (42.1%) expected to be
informed about new developments in the area of ASD (e.g., ‘‘I need to know if there is any new medication; here in the island
we do not have any briefing’’, ‘‘I want to learn about my rights and the rights of my child’’), to improve their child’s condition
(23.7% – e.g., ‘‘I want to help my child get better’’, ‘‘I want to learn who is the best speech therapist in the area, so that I can get
my child there’’), to meet with other parents (21.1% – e.g., ‘‘we can all get together and fight for the rights of our children’’, ‘‘I
can become friends with mothers of other children with ASD, so that I will not feel alone’’), and to understand their child (13%
– e.g., ‘‘I want to understand my child, so that I can do the right things with him’’, ‘‘I want to get into her world and see things
the way she does’’).

2.2. Parent-related variables

Mothers and fathers did not differ in the problems that they identified in their children with ASD (x2 = 4.36, df = 5,
p > 0.05) and in their family (x2 = 6.31, df = 5, p > 0.05), in the way their family (x2 = 2.94, df = 2, p > 0.05) and their social
environment (x2 = 0.22, df = 5, p > 0.05) reacted towards their child with ASD, in the reasons why they participated in
support groups (x2 = 2.94, df = 3, p > 0.05), and in the expectations that they had from the support groups (x2 = 7.70, df = 3,
p > 0.05). However, a statistically significant difference was found in the way that fathers and mothers perceived the reaction
of their work environment towards their child with ASD (x2 = 27.54, df = 3, p < 0.001); more fathers than mothers had
withheld from their colleagues that they have a child with ASD and as a result they reported greater lack of understanding
and support.
Parents with secondary education and parents with university education did not differ in the family problems that they
reported (x2 = 5.91, df = 5, p > 0.05), in the way their family reacted towards their child with ASD (x2 = 1.67, df = 2, p > 0.05),
and in the expectations that they had from the support group (x2 = 1.96, df = 3, p > 0.05). Parental education differentiated
significantly: (a) the problems that the parents identified in their children with ASD (x2 = 11.37, df = 5, p < 0.05); parents
with secondary education perceived their children as having more problems with self-help skills, while parents with
university education identified more educational problems and more problems with self-occupation, (b) the parents’
perceived reactions of the social environment towards their child with ASD (x2 = 11.75, df = 2, p < 0.005); parents with
university education reported more lack of understanding in comparison to parents with secondary education who reported
more acceptance, (c) the parents’ perceived reactions of the work environment towards their child with ASD (x2 = 44.68,
df = 3, p < 0.001); parents with university education reported more acceptance in comparison to parents with secondary
education who tended to withhold from their colleagues the presence of the child with ASD, and (d) the reasons why parents
participated in support groups (x2 = 22.52, df = 3, p < 0.001); parents with secondary education expected more practical
support, while parents with university education expected more psychological support. No statistically significant
differentiations were found according to parental profession in any of the categories that were explored.

2.3. Child-related variables

The gender of the child with ASD did not differentiate the family problems that the parents reported (x2 = 8.73, df = 5,
p > 0.05), the reactions of the social environment that the parents perceived towards their child with ASD (x2 = 4.27, df = 2,
p > 0.05), and the reasons why the parents participated in support groups (x2 = 6.64, df = 3, p > 0.05). The child’s gender
differentiated significantly: (a) the problems that the parents identified in their children with ASD (x2 = 22.41, df = 5,
p < 0.01); parents of girls were concerned more about problems with self-help skills, while parents of boys were more
concerned social problems, (b) the parents’ perceived reaction of their family environment towards their child with ASD
(x2 = 6.11, df = 2, p < 0.001); parents of girls reported more acceptance by their family, while parents of boys reported greater
lack of understanding, (c) the parents’ perceived reactions of their work environment towards their child with ASD
(x2 = 9.73, df = 3, p < 0.05); parents of girls reported more acceptance by their colleagues, while parents of boys tended to
withhold from their colleagues that they had a child with ASD, and (d) the expectations parents had from support groups
(x2 = 8.57, df = 3, p < 0.05); most parents of boys expected to meet with other parents and to understand their child, while
most parents of girls expected to improve their child’s condition.
The age of the child with ASD did not differentiate the parents’ perceived reaction of their family (x2 = 3.63, df = 2,
p > 0.05) and their social environment (x2 = 3.77, df = 2, p > 0.05) towards their child with ASD, the reasons why the parents
participated in support groups (x2 = 0.19, df = 3, p > 0.05), and parental expectations from support groups (x2 = 3.85, df = 3,
p > 0.05). The child’s age differentiated significantly: (a) the problems that parents identified in their children with ASD
(x2 = 16.64, df = 5, p < 0.01); parents of older children were more concerned about problems with self-help skills, self-
occupation, and behavioural problems, while parents of younger children were more worried about communication
problems, (b) the problems that parents identified in their families (x2 = 13.56, df = 5, p < 0.05); parents of younger children
reported more communication problems, while parents of older children reported more practical and behavioural problems,
and (c) the parents’ perceived reactions of their work environment towards their child with ASD (x2 = 8.73, df = 3, p < 0.05);
parents of younger children reported more understanding by their colleagues, while the parents of older children tended to
 V. Papageorgiou, E. Kalyva / Research in Autism Spectrum Disorders 4 (2010) 653–660 657

withhold from their colleagues that they had a child with ASD. No statistically significant differentiations were found
according to children’s type of education in any of the categories that were explored.

3. Discussion

Most parents of children with ASD who participate in support groups identified communication as the most important
problem faced both by their child and their families. This is expected, since lack of communication is one of the most
prevalent symptoms of ASD according to American Psychiatric Association (2000) and so it is evident especially in children
with ASD who are at the lower end of the spectrum (Lord, Risi, Lambrecht, & Cook, 2000). Social skills deficits that are also
common in children with ASD constitute the second most important problem that these children face (Koegel, Koegel,
Hurley, & Frea, 1992), followed by lack of self-help skills (Anderson, Jablonski, Thomeer, & Knapp, 2008), educational
problems, behavioural problems (Matson, Gonzalez, & Rivet, 2008), and lack of self-occupation ability. Social skills deficits
limit the chances that children with ASD have to profit from interacting with peers, especially since inclusion in Greece refers
mainly to educational and not social or emotional aspects of development (Agorastou, Kalyva, Kaderoglou, & Stefanidis,
2009). These deficits may well persist and become more intense if these children do not receive appropriate training.
Children who are not toilet trained cannot attend mainstream schooling according to the Greek legislation and many
children who face problems with self-help skills are cared for by their parents who are asked to come to school and change
their diapers, for example (Kalyva, 2009). Educational problems are more evident usually in low functioning children with
ASD and those who do not attend inclusion classes or special schools (Baker, Wang, & Walberg, 1994; Bitterman, Daley,
Misra, Carlson, & Markowitz, 2008), while potential behaviour problems can make the situation even more difficult. There
were also some parents who were concerned by the fact that their children do not know what they can do in order to occupy
themselves when they are not in the company of an adult and may spend a lot of time engaged in self-stimulatory activities.
The parents perceived similar problems for their families, since it was difficult for them to handle the behavioural
problems of their children, which can often embarrass them when they are in public places (Gray, 1993) and may narrow
down their social lives, a problem that was also acknowledged by them. Practical problems that were pointed out by the
families have emphasised the lack of both practical social support and financial support (Beresford, 1994; Boyd, 2002;
Luther, Canham, & Cureton, 2005), which influences their ability to provide valuable training to their children. Some parents
admitted that they experience psychological problems because of the difficulties that their children with ASD face and the
fact that they do not know how to cope with them (Wolf, Noh, Fisman, & Speechley, 1989). The stress that is put on the
parents can jeopardise the coherence of the family system as a whole and affect the quality and quantity of treatment that
the child with ASD receives (Benson & Karlof, 2009; Konstantareas & Homatidis, 1989; Lee, 2009; Weiss, 2002).
It is important to acknowledge the problems that parents of children with ASD identify in their lives and in the lives of
their children, since they seem to be linked to the reason why they participate in parent support groups and to the
expectations that they have from them. Most parents reported that their reasons for participating in these groups were that
they wanted to be informed about developments in the area of ASD, such as new treatments, they wanted to receive practical
support and advice, they wanted to socialize with parents who have children with similar disabilities, and they needed some
psychological support that they believed could be provided by the group. The reasons that the parents provided are
consistent with data from other studies, where the role of the support group is described as a forum for exchange of
knowledge and developments in the area of ASD, as well as group-therapy type support (Rawlins & Horner, 1988;
Weissbourd & Kagan, 1989), which is not official in the case of Greece. The expectations that parents have from support
groups are similar, since they want to be informed about new developments, to improve the condition of their child through
access to better services, to meet with other parents who have children with similar difficulties, and to understand their child
better through some training or practical guidance. It is obvious that for these parents support groups act as informal sources
of social support (Huws et al., 2001; Smith et al., 1994).
Since social support is a key factor in determining the functioning level of the family (Farrell & Barnes, 1993), parents were
asked to report how their family, social, and work environment react towards their child with ASD. The majority of parents
reported that all these environments accepted their child and helped them both practically and emotionally. Almost 1/3
reported that they experienced avoidance and rejection, while some other parents identified lack of interest or
understanding on behalf of their environments. It is interesting to note that 1/3 of the parents have not revealed to people
from their work environment that they have a child with ASD, mainly because they were afraid of stigmatization or that they
would not have equal promotion opportunities at work. These findings reveal that most parents of children with ASD have a
social support network made of extended family members, friends, and colleagues that serve both functional and emotional
aspects (Hastings, 1997; Huws et al., 2001).
Another aim of this study was to explore whether the self-reported needs of parents and their expectations from support
groups, as well as their perceptions of informal social support differ according to their gender and education and according to
the age and gender of their child with autism. All these variables had an effect, so reference will be made first to parent-
related variables and then to child-related variables.
As far as gender differences are concerned, fathers tended to withhold more than mothers from their colleagues at work
that they have a child with ASD and as a result they reported also greater lack of understanding and support from their work
environment. This might happen because fathers are more concerned about stigmatization (Gray, 1993), they do not want to
be pitied by their colleagues, and they want to have equal chances of promotion. This decision might actually cause extra
658 V. Papageorgiou, E. Kalyva / Research in Autism Spectrum Disorders 4 (2010) 653–660

stress to them, since they try to hide something important from people in their work environment, with whom they interact
on a daily basis, and they have less adaptive coping skills than women (Lee, 2009). These gender differences could also be due
to the fact that a child with ASD is the absolute parenting burden for fathers, while for mothers he/she is a relative burden
(Milgram & Atzil, 1998) and that fathers may adopt a more mechanical attitude toward child rearing (Eisenberg, 1957).
The education of the parents was a differentiating factor as well, since parents with secondary education perceived their
children as having more problems with self-help skills, reported more acceptance from their social environment, tended to
withhold from their work environment that they have a child with ASD, and expected more practical assistance from the
parent support group (Kalyva, 2005). Parents with secondary education may have jobs where they feel that they could be
easily replaced if they do not perform adequately and an employer might see a child with ASD as a liability. They are also
more likely to have a job that is not very well paid and they may require more practical assistance from the support group in
order to meet with the increased financial demands of caring for a child with ASD.
In terms of child-related variables, parents of girls with ASD were more concerned about problems with self-help skills
(especially when they reach puberty and they start to menstruate), while parents of boys with ASD were more concerned
with potential social problems that could lead to social exclusion or even troubles with the law. The concerns that parents
voiced are somewhat related to issues that might come up at school or when they are out of their house and interacting with
other people. Parents of girls reported more understanding and acceptance from both their family and their work
environment, probably because in the Greek society the boy is seen as the continuation of the family name and as someone
who should be strong and healthy to provide for the family that he will create in the future (Kataki, 1984). So, society is more
willing to accept and come to terms with the appearance of special needs in a girl rather than a boy (Callan & Kee, 1981). A
final distinction made according to the gender of the child with ASD was based on the expectations that parents have of the
support groups. More specifically, parents of girls expected to improve their child’s condition, while parents of boys wanted
to meet with other parents and to better understand their child. Due to the division of gender roles in the Greek society, it is
plausible that the parents of girls have reached faster the acceptance stage of mourning and were working on bettering the
life of their children, while the parents of boys were still in the denial or bargaining stages of mourning and were looking for
an explanation for what was happening to their children (Anderegg, Vergason, & Smith, 1992; Henderson & Vandenberg,
1992). It is indicative that Osborne, McHugh, Saunders, and Reed (2008) reported that high levels of parenting stress
counteracted the effectiveness of the early teaching intervention.
The other variable that was related to children with ASD was their age, with parents of older children expressing more
concerns about problems with self-help skills, self-occupation, and behavioural problems, while parents of younger children
were more worried about communication problems. This differentiation partly reflects the symptoms that are more evident
at different ages (American Psychiatric Association, 2000). Most parents start worrying and seek for a diagnosis when they
realize that their child does not communicate like other children do—and this happens usually at a young age (Ornitz,
Guthrie, & Farley, 1977). As children grow older, parents come to terms with the communication problem that is either partly
resolved or remains an issue, and acknowledge more problems that have to do with the ability of their children to take care of
themselves or to occupy themselves and to behave appropriately (Loveland, Pearson, Tunali-Kotoski, Ortegon, & Cullen
Gibbs, 2001; Seltzer, Krauss, Shattuck, & Orsmond, 2003), especially since society shows less tolerance towards these
problems. It should also be stressed that older children who do not resolve the problems mentioned above do not get the
chance to go to mainstream settings or even to inclusion classes and so they attend special schools that limit the chances of
social inclusion (Harris & Handleman, 2000). The differentiated response of the society according to the age of the child is
portrayed also in the perceptions of parents of younger children that their work environment is more understanding, when
parents of older children refrain from informing their colleagues that they have a child with ASD.
This study, which is the first that looked into the self-reported needs of parents of children with ASD and the reasons and
expectations for their participation in support groups, has certain limitations: (a) the participants were members of support
groups and so they might have different needs or expectations from parents who are not members of such groups; (b) since
there was no control group, it is not possible to explore whether parents of children with other developmental disabilities or
parents of typically developing children would express similar needs and concerns about their children or similar
expectations from support groups; (c) although the participants were representative of the whole of Greece, there was no
differentiation according to the place of residence that might impact on the kinds of services that were available to children
with ASD and their parents; (d) this study was conducted in Greece, which provides a particular cultural, social, and
educational context that might not be directly comparable with that of other countries and so relevant research in other
contexts might yield different results. However, since the difficulties faced by children with ASD and their families were
documented to be similar in diverse contexts, it is not likely to reach very different conclusions; (e) richer data might have
been gathered through focus groups and other more qualitative methods, but this was not feasible due to time and money
restrictions. It should be pointed, though, that a significant advantage of this study is that the questions were open-ended
and the participants were not forced to choose between pre-selected answers (Kitzinger, 1995). Therefore, the findings are
drawn for the actual responses of the parents and not from the preconceptions of the researchers about what their answers
might be (Avramidis & Kalyva, 2006).
The self-reported needs of the parents of children with ASD who participate in support groups should be taken into
serious consideration, since they seem to constitute the reasons for their participation and to shape their expectations from
the support groups. It is also important to acknowledge that these needs, reasons, and expectations are differentiated
according to parent-related (parental gender and parental education) and to child-related (gender and age of the child with
 V. Papageorgiou, E. Kalyva / Research in Autism Spectrum Disorders 4 (2010) 653–660 659

ASD) variables. If the support groups of parents of children with ASD are to be successful in their roles, they should not be
static but dynamic and try to address the differentiated needs and expectations of their members.

Acknowledgements

The authors would like to thank Vlastaris Tsakiris for his comments on the paper and all the parents who kindly
participated in this study, as well as the support groups that gave them access to their sample.

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