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Procedia Social and Behavioral Sciences 1 (2009) 2534–2540

World Conference on Educational Sciences 2009

Impact of autistic children on the lives of mothers

Selda Koydemira*, Ülkü Tosuna
a
Yeditepe University, School of Education, Department of Educational Sciences, 34755, Kayisdagi, Istanbul, Turkey

Received October 19, 2008; revised December 10, 2008; accepted January 02, 2009

Abstract

The present study attempted to investigate the impact of having an autistic child on the lives of Turkish mothers. Consensual
Qualitative Research (CQR) Approach was followed. Semi-structured interviews were conducted with 10 mothers of autistic
children. The interview questions were designed to reveal many facets of the mothers’ experiences. The analysis resulted in a
variety of themes related to the experiences of mothers, such as the reactions to the disability of the child, sources of stress,
coping strategies used to deal with stress, involvement with the education of the child, and evaluation of the facilities of the
special education center.
© 2009 Elsevier Ltd. Open access under CC BY-NC-ND license.

Keywords: Autistic children; mothers of autistic children; special education; Turkish mothers; consensual qualitative research.

1. Introduction

Autism is a developmental disability characterized by an impaired development in social interactions and

communication (Quinn & Malone, 2000). Children with autism have difficulty in developing appropriate
relationships (Frith, 1993), and they exhibit a variety of destructive behaviors such as repetitive (Mundy & Sigman,
1989), and self-abusive behaviors (Bromley, Hare, Davison, & Emerson, 2004).
It is known that imbalances may occur in a family with the diagnosis of a disabled child (Seligman & Darling,
1997). The family is faced with certain changes by the addition of a child given that all family members are affected
by every event in the child’s life. Parents of children with developmental disabilities are constantly in need of
information about their child’s disability and how to deal with the behaviors and attitudes (Boyd, 2002). They also
experience high levels of stress which may require professional support (Boyd, 2002; Floyd & Gallagher, 1997), and
may lead to feelings of fear, confusion, and loneliness (Smith, Oliver & Innocenti, 2001). Experience of stress and
tension of the parents starts with the reactions of shock, frustration and grief to the initial diagnosis of the disability
(Ferguson, 2002; Fortier & Wanlass, 1984) and continues throughout the whole life even though the parents get
more used to the situation (Kearney & Griffen, 2002). This is because parents should constantly adapt themselves to

Selda Koydemir.
E-mail address; skoydemir@yeditepe.edu.tr

1877-0428 © 2009 Elsevier Ltd. Open access under CC BY-NC-ND license.

doi:10.1016/j.sbspro.2009.01.447
 Selda Koydemir et al. / Procedia Social and Behavioral Sciences 1 (2009) 2534–2540 2535

specific stressors that may occur throughout the childhood and adulthood years of the child (Floyd & Gallagher,
1997).
Studies showed that families of children with autism, similarly, face several challenges. The characteristics of
autistic children, such as hyperactivity, self-injurious behaviors, imbalances in eating and mood, and obsessions and
compulsions, make it difficult for parents to interact with their children (Bailey et al., 1986; Dudziak, 1986). Some
of the challenging aspects of living with these children are heavy care-giving demands, relationship quality among
family members, siblings’ coping difficulties, future and educational concerns, and financial difficulties (Fong,
Wilgosh, & Sobsey, 1993; Hastings, & Johnson, 2001). Having a child with autism requires that parents understand
the necessity of lifelong interventions for the child, which place additional duties on the part of the parents. Among
these interventions is intensive teaching both in and outside of child’s home that usually involves instruction,
measuring, and evaluating by parents (Gargiulo, 2006).
Research (Heller & Hsieh, 1997; Marks, 1998) showed that mothers have greater care-giving burden than fathers
in typical families. On the other hand, in the families of disabled children mother is the most important person and
the primary caregiver. Mothers of autistic children reported more stress and fewer competencies in parenting than
mothers of children without disabilities (Fisman & Wolf, 1991).Compared to fathers, mothers of children with
autism reported higher levels of stress (Moes, Koegel, Schreibman, & Loos, 1992). In addition, mothers of autistic
children are more likely to feel guilt, tension, and concern about their parenting skills than were fathers (Harris,
1984). Thus, with the current study it is hoped to further the understanding of the experiences Turkish mothers of
children with autism so that implications could be formed in relation to the mothers’ experiences.
This study focused on Turkish mothers of autistic children and attempted to examine mothers’ experiences
thoroughly. Existing research on experiences of mothers of autistic children provided data for Western societies in
general; however, how mothers in other cultures, such as Turkey, are affected by the autistic child, seems unknown.
Using samples from different cultures such as more collectivist and traditional ones may help researchers and
practitioners to compare the aforementioned experiences and design appropriate intervention strategies. It is
believed that the support services for mothers of autistic children could be provided with the help of such data. The
purpose of this study, specifically, was to understand the effects of an autistic child on a mother’s life, to identify the
stages that the mother went through during the adaptation process, the level of stress and ways of coping, future
concerns of the mother, and the perception of mothers of the special education facilities.

2. Method

2.1. Participants
The participants of this study were 10 mothers of children diagnosed with autism. At the time of data collection,
all children were attending a Special Education Center in Istanbul. The age of the mothers ranged between 30 and
48; whereas the age of the children ranged between 7 and 19. All mothers reported their family to represent middle
socio-economic status.

2.2. Data collection

In order to collect data, semi-structured interviews were carried out with the participants. Mothers were first
responded to questions that attempted to gather demographic data such as gender, age of the mother and the child,
and SES. Then, mothers responded to 18 questions related to the experiences of the mothers. In identifying the
questions, first, both authors prepared an interview form based on the relevant literature. Then, together they arrived
at consensus and decided on the most meaningful questions. Lastly, modifications were made after the questions
were subjected to the opinions of another expert in the field.

2.3. Procedure

In this study Consensual Qualitative Research (Hill, Thompson, & Williams, 1997) approach was employed. This
method consists of several stages including sample selection, data collection through interviews, transcription of the
2536 Selda Koydemir et al. / Procedia Social and Behavioral Sciences 1 (2009) 2534–2540

data, identification of the main domains, identification of the core ideas of each domain, identification of categories
and subcategories of each core idea, and finally cross-analysis of the categories.
The interviews were carried out by senior counseling students trained in such areas as appraisal techniques,
interview and counseling skills, and individuals with special needs. The interviews took approximately an hour, and
responses of the participants were tape recorded by the interviewers.

2.4. Data analysis

The analysis suggested by Hill et al. (1997) was employed to analyze the research data. This method requires two
experts, who are for this study the authors, to reach a consensus for each stage of the analysis. Specifically, one of
the experts carried out the analysis; then the other served as the auditor in each step as to provide reliability and
validity.
The first stage involved identification of the main domains. For this, domains were determined using three of the
interview transcriptions. Then, based on these domains, researchers independently analyzed each participant’s
responses. These separate analyses were then compared and contrasted by the researchers in order to reach a
consensus.
In the second step, constructing core ideas, the aim was to summarize the main points of transcriptions of each
domain. One of the researchers read the statements of the transcriptions related to each domain, and made a
summary, also called abstracting. Then, the other researcher made sure the core ideas are consistent and accurate, a
procedure called audit of core ideas.
The last stage was the cross-analysis. Each researcher independently went over the transcriptions to identify the
categories and subcategories of core ideas. In identifying the frequencies of the responses, tables were drawn which
indicated whether a participant had a response related to the specific subcategory. These frequencies were a)
general, which applied to all of the participants; b) typical, which applied to half or more than half of the
participants; and c) variant, which applied to less than half of all the participants (Hill et al., 1997). A category or
subcategory that included only a single case was omitted.

3. Results

The analysis of the data resulted in 6 domains, namely understanding of the disability by the mother, reactions to
the disability, experiences of stress and burnout, evaluation of the special education center, effects of the child on
the personal life of the mother, and future expectations and hopes. This section presents the themes that emerged
from the interviews in relation to these domains.

3.1. Understanding of the disability by the mother.

This domain included categories and subcategories emerged from the responses to the questions “How would you
describe your child’s disability? How well do you think you are informed about this disability? What do you do to
get more informed?”

3.1.1. Definition of the disability.

In the first category, the most highly endorsed description of the child’s disability was autism (6 responses,
typical), which was followed by no disability (2 responses, variant), and limitations in behaviors (2 responses,
variant).

3.1.2. Being informed.

Most of the mothers reported that they were not well informed about autism (6 responses, typical).
 Selda Koydemir et al. / Procedia Social and Behavioral Sciences 1 (2009) 2534–2540 2537

3.1.3. Things done to be informed.

Consulting school teachers and counselors was the most frequently stated method of getting information
regarding autism (6 responses, typical). Other ways were reading books (3 responses, variant), searching the web (2
responses, typical), and attending seminars (2 responses, variant).

3.2. Reactions to the disability.

Data for this domain was gathered by asking “How did you feel when you first learned about the disability? What
differences you experienced from the first diagnosis until now in terms of your feelings? How do you feel right
now?

3.2.1. First reactions.

All participants reported experiencing a shock as the initial reaction to the diagnosis (10 responses, general).
Rejection was the other reaction which was frequently reported (9 responses, typical), followed by depression (6
responses, typical), self-blame (4 responses, variant), and denial (3 responses, variant).

3.2.2. Current reactions.

As for the reactions that mothers were currently experiencing, acceptance/adjustment was the most frequent one
(7 responses, typical). Feeling oneself better (4 responses, variant), and becoming more hopeful (3 responses,
variant) were the other subcategories.

3.3. Experiences of stress and burnout.

This domain included categories and subcategories obtained by the responses to such questions as “Does having
an autistic child make you experience stress and burnout? What situations, events, or people lead to stress and
burnout? How do you manage stress and burnout? What kind of social support resources do you have?”

3.3.1. Presence of stress and burnout.

All of the mothers reported that they experienced stress (10 responses, general); only 2 of them (variant) reported
experiencing burnout. In addition, some of the mothers stated that they also felt exhaustion besides stress (4
responses, variant).

3.3.2. Sources of stress and burnout.

The sources of stress mothers reported were exhaustion (6 responses, typical); being the only person taking care
of the child (6 responses, typical); financial constraints (4 responses, variant); and negative attitudes of people
towards the child (3 responses, variant).

3.3.3. Coping with stress and burnout.

The support provided by the family members was the most prevalent coping style of the mothers (6 responses,
typical). Mothers also reported dealing with stress by the help of their love toward their children (4 responses,
variant), by taking professional help (3 responses, variant), by support from friends (3 responses, variant), and with
the help of the school teachers and counselors (2 responses, variant).
2538 Selda Koydemir et al. / Procedia Social and Behavioral Sciences 1 (2009) 2534–2540

3.4. Evaluation of the special education center.

The answers to questions “What do you think about the services offered at the school? What are the positive and
negative sides of the education at the school? What suggestions can you make to improve the quality of the
educational services?” resulted in the fourth domain, namely evaluation of the special education center.

3.4.1. Satisfaction with the center.

First category involved the satisfaction level of the mothers with the school. Most of the mothers found the
school as satisfying (9 responses, typical).

3.4.2. Evaluation of the teachers.

Teachers were evaluated by the mothers as involved (6 responses, typical); helpful (4 responses, variant); and
sympathetic (3 responses, variant).

3.4.3. Suggestions for education.

Mothers also made suggestions that could help improve the school education. The most frequently stated were
more meetings with parents (5 responses, typical), and individual meetings with children (4 responses, variant).

3.5. Effects of child on the personal life of mother.

Mothers responded to such questions as “How has parenting an autistic child influenced your personal life? How
has your relationship with other family members been influenced by the diagnosis of the disability?”

3.5.1. Career related problems.

One category for the sixth domain was related to having career related problems. As subcategories, such themes
as postponing the career (4 responses, variant), finishing the career (4 responses, typical), and working much less
than the husband (2 responses, variant) emerged.

3.5.2. Relationship problems.

As another effect of the child, mothers talked about relationship problems. One of them was lack of social life
which was a frequent concern (6 responses, typical). Limited involvement with the other child was another problem
(4 responses, variant); which was followed by divorce (3 responses, variant), and low quality relationship with the
husband (2 responses, variant).

3.6. Future expectations and hopes

Last domain emerged by the responses to these questions: “What are your future expectations and hopes
regarding your child?” The themes emerged were hoping that the child would be able to take care of him/herself (6
responses, typical), the child would have an occupation (4 responses, variant); and the child would attend a regular
school (3 responses, variant).

4. Discussion

This study attempted to explore the experiences of Turkish mothers in raising a child with autism. Overall the
results suggested that the experiences of these mothers are similar to the experiences of mothers of other disabled
children and the mothers of autistic children in other cultures.
 Selda Koydemir et al. / Procedia Social and Behavioral Sciences 1 (2009) 2534–2540 2539

It was found that most of the mothers of autistic children lack accurate information regarding the disability.
Although there were some attempts by the mothers to get more informed such as consulting school teachers and
counselors, or using self-help resources, mothers indicated that they did not see themselves as fully informed about
the situation.
With regard to the emotional reactions, the mothers expressed a variety of feelings when their child was first
diagnosed. These included denial, shock, severe grief, and self-blame which are in line with the findings of the
existing literature (Cho, Singer, & Brenner, 2000; Ferguson, 2002). Mothers reported getting adjusted to the
situation in time, and thus started to feel better and more hopeful. Other researchers (e.g., Gargiulo, 1985) also had
identified similar stages that parents of disabled children go through the adaptation process.
All participants reported experiencing stress which was found to be triggered mostly by financial problems and
heavy child care demands. This finding is consistent with the results of the earlier studies (Byrne & Cunningham,
1985; Gallimore, Bernheimer, & Weisner, 1999) conducted in other cultures, implying the universality of this
experience. As in many other studies (e.g., Marks, 1998), this study also revealed that mothers were the primary
caretaker for their disabled child. Thus, it is acceptable that mothers experience high levels of stress and burnout
with regard to the impact of their autistic child. Mothers of the current study also indicated the most frequent coping
mechanism that they used was support from the family. Considering the importance of family relationships in
Turkey (ømamo÷lu, 1987), it is not surprising that familial support is seen as an important coping resource. Mothers
also reported other ways of dealing with stress such as love toward the child, and receiving professional help, a
result in line with the earlier studies (Bristol, 1984; Gallimore, et al., 1999).
This study found that one of the consequences of having an autistic child was postponing or finishing career.
Mothers in other cultures also reported that having a disabled child prevented them to seek employment (Grant &
Ramcharan, 2001). Besides, mothers were found to be concerned mostly of the social and vocational future of the
child as well as self-care. Other studies (e.g., Floyd & Gallagher, 1997) also showed that parents are concerned with
the independent functioning of the child.
Based on the findings, some implications and recommendations may be drawn. It is clear that mothers of children
with special needs have to be provided with accurate information they can use to understand and help their children.
It has been argued that families need information about their child’s disability and about how to deal with it (Boyd,
2002), which is believed to help mothers experience less tension and stress (Akkök, 1989). Considering the needs of
mothers of children with special needs, programs such as stress management, coping skills, and communication with
the child need to be designed and implemented as part of formal special education. However, psychological services
should be delivered to all family members who are affected by the disabled child; and formal special education
services should be designed to include both parent. Such programs can decrease the level of stress and develop
certain coping skills of caregivers (Feigin & Peled, 1998; Gammon & Rose, 1991).
Although after 1980s, more Turkish mothers joined the work force, they are still not expected to be the
breadwinners in the society. Thus, it may not be very problematic for the mothers of autistic children to postpone or
even finish their career. However, this may be one of the reasons of financial problems that mothers have reported,
which may result in the experience of stress and burnout. The role of all family members seems important in sharing
the duties. Further research may focus on how fathers and family members perceive their role in caring their autistic
child. More information is needed why other family members including the fathers are not involved much in child
care.

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