Running head: SOCIAL SUPPORT AND AUTISM SPECTRUM DISORDERS: A PARENT’S EXPERIENCE 1
Social Support and Autism Spectrum Disorders: A Parent’s Experience
Meredith Karny, Cait Krasowski and Samantha Zito
James Madison University
SOCIAL SUPPORT AND AUTISM SPECTRUM DISORDERS: A PARENT’S EXPERIENCE
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Abstract
Research on social support for parents of children with Autism Spectrum Disorder (ASD)
has been conducted in various countries world wide; this study specifically focused on social
support systems in Malta. The purpose of this study was to examine the insight of Maltese
parents on their experiences of receiving and utilizing social support for their child who has
ASD. The researcher and three student assistances facilitated a structured focus group of 10
Maltese parents. Open-ended questions were asked and answers were recorded, transcribed and
analyzed for significant themes. Researchers found that Maltese parents do not perceive that they
receive the appropriate social support systems to help raise their child with ASD. Further
research into the relationship between the Maltese systems, such as the government and
educational system, and the families affected by ASD could aid in focusing further on the
perceptions of social support by parents of children with ASD in Malta.
Keywords: Autism Spectrum Disorders, Social Support, Malta, Parental Needs, and Adaptation
SOCIAL SUPPORT AND AUTISM SPECTRUM DISORDERS: A PARENT’S EXPERIENCE
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Social Support and Autism Spectrum Disorders: A Parent’s Experience
Introduction
Autism is considered by many to be the most severe childhood behavioral disorder with
the most complex developmental pattern (Altiere & Kluge, 2009). This research project was
proposed to determine the rate of Autism Spectrum Disorder in Malta and how this disorder is
supported socially. The research aimed to assess parent's experience of receiving and utilizing
social support for the child who has ASD. Representative data for the United States was
collected and analyzed in a literature review, while data for the Maltese perspective was obtained
in a focus group. The authors compared and contrasted the social support of ASD in Malta to the
United States.
Background
Autism Spectrum Disorders (ASDs) are life-long developmental disabilities of varying
severity, and include autistic disorder, Asperger’s disorder and pervasive developmental
disorder-not otherwise specified (Lin, Orsmond, Coster and Cohn, 2011). ASDs are
characterized by qualitative impairments in communication, reciprocal social interaction and the
presence of restricted and repetitive behaviors or interests (Lin et al, 2011). A child with ASDs
with delays in speech and language may have severe difficulty in learning language. Language
may be learned with peculiar speech patterns (Elder and D'Alessandro, 2009).
Social relatedness for a child with ASDs is potentially impaired in which the child may
make poor eye contact and avoid social contact and an inability to take the perspective of others
or empathize. Children with ASDs can become distressed by changes in schedules and routines.
Physically, these children may have repetitive body movements including pacing, hand-flapping
or finger-flicking and rocking. Children may frequently have tantrums and impulsive behaviors
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with limited safety awareness (Elder and D'Alessandro, 2009). The social deficit in ASD is
marked by impairment in the use of nonverbal behaviors, failure to develop peer relationships, a
lack of seeking to share enjoyment, interests, or achievements with others and a general lack of
social or emotional reciprocity (Lasgaard, Nielsen, Eriksen, Goossens, 2009).
The treatment goals for ASDs include maximizing the child’s ultimate functional
independence and quality of life by minimizing the core features of ASDs. Facilitating
development and learning, promoting socialization, reducing maladaptive behaviors and
educating and supporting families are also important treatment modalities (Elder and
D'Alessandro, 2009). For social interaction and communication difficulties, one-to-one sessions
can be seen as highly time consuming and cost-intensive, so adopting alternative approaches are
necessary; therefore, social skills groups for these children are a viable alternative (Rose &
Anketell 2009). Parents are also hampered by insufficient access to professional help, which
means that they are usually responsible for coordinating, advocating for, and making the
decisions about treatment (Pisula & Kossakowska 2010).
Social Support is a term that describes aspects of an individual's social context that may
enhance psychological and physical well-being (Pottie, Cohen and Ingram, 2009). The two main
types of social support are received and perceived. Received refers to the actual receiving of
assistance from others. Perceived refers to ones perceptions of the availability of support and/or
satisfaction with the support provided (Pottie et al., 2009). Professionals and agencies that
provide specialized services to families of children with ASD should be monitoring parents’
perceptions of their needs and of how well they are met by programs and finally responding to
the needs identified by the families in order to promote healthy adaptation (Siklos & Kerns,
2006). Siklos and Kerns identified fundamentals that family support should embody. According
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to their study services should both enable and empower parents to make informed decisions
regarding their disabled child, be open to the needs of the entire family and be flexible in
accommodating to the unique needs of individual families.
Research indicates that parents of children with developmental disabilities report higher
levels of stress than do parents of children without such difficulties (Benson & Karlof, 2008).
Parents of children with ASD report greater negative impact of having a child with a disability
and poorer well being in comparison to parents of children with other developmental disorders
such as Down syndrome (Smith et al 2010). Stress proliferates and has a tendency for an initial
stressor or stressors to create additional stressors in other areas of life (Benson & Karlof, 2008).
For parents of children with ASDs, the disability is the initial stressor, but raising a child with a
disability introduces challenges throughout the life cycle for the child as an individual and the
family as a unit. Perceived social support is an important means of coping because the extent to
which individuals regard themselves as being cared for and supported by others is positive
(Smith et al, 2010). Research indicates mothers of children with Autism spent more time
providing child care, less time in leisure activities, had more stressful events, arguments, and
fatigue than mothers from a nationally representative sample of children without disabilities
(Smith et al, 2010). In Western countries, evidence suggests that parents of children with an ASD
reported greater family adaptation and reduced parental stress when they perceived more social
support (Lin et al 2011).
Research on the presence of social support for ASDs in the United States has been
published in numerous peer-reviewed studies. Siklos and Kerns (2006) found that in past studies
that parents of children with ASD received similar support as parents of typically developing
children. The difference was in the quality of the support received by the two groups of parents:
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the parents of children with ASD reported receiving aggravations from more of the same
agencies compared to the parents of typically developing children. Parents’ beliefs about
receiving adequate social support for themselves and their child have been shown to be very
important for successful family adaptation (Siklos & Kerns 2006). Social supports identified as
effective include support groups, support from one’s spouse, family, and friends, the availability
of leisure time, support from community programs, professional help, and the availability of
services and programs geared towards families who have a child with autism. Families who
receive these supports exhibit healthier adaptations to having a child with an ASD (Siklos,
Kerns, 2006).
The CDC estimated in 2005 that 1 in 166 children would be affected by an ASD (Stoner
and Angell, 2006). Parents of children with ASDs, on average, report first becoming concerned
about their child’s development at about 18 months and first seeking professional help or advice
at about 24 months. The average age of diagnosis has been reported as ranging from 3 ½ to 6
years (Renty & Roeyers, 2006). Stoner et al (2006) identified four main parent roles in raising a
child with disabilities. A negotiator is one who brings about desired outcomes through
conferences, discussions and compromises. The role of monitor describes parental actions that
involve checking the quality and content of their children's education programs on an ongoing
basis. The role of supporter can be defined as parents encouraging, assisting and encouraging
social supporters, like teachers. The advocate role reflects parental participation in supplemental
activities related to ASD beyond anything directly benefiting their affected child.
Theoretical Framework
According to Glanz and colleagues (2002), the Social Cognitive Theory is relevant to
health communication. First, the theory deals with cognitive, emotional aspects and aspects of
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behavior for understanding behavioral change; second, the concepts of the SCT provide ways for
new behavioral research in health education; and finally, ideas for other theoretical areas such as
psychology are welcome to provide new insights and understanding (Glanz, Rimer, & Lewis,
2002). The social cognitive theory explains how people acquire and maintain certain behavioral
patterns, while also providing the basis for intervention strategies (Bandura, 1997). Evaluating
behavioral change depends on the factors environment, people and behavior, therefore the Social
Cognitive Theory provides a framework for designing, implementing and evaluating programs
(Glanz et al., 2002).
Environment refers to the factors such as one’s social and physical environment that can
affect a person’s behavior (Glanz et al., 2002). An individual’s social environment can include
family members, friends and colleagues whereas the physical environment may represent the
size of a room, the ambient temperature or the availability of certain foods (Glanz et al., 2002).
Environment and situation provide a framework for understanding behavior (Parraga, 1990). The
situation refers to the cognitive or mental representations of the environment that may affect a
person’s behavior (Parraga, 1990). The situation is a person’s perception of the place, time,
physical features and activity (Glanz et al, 2002).
The three factors environment, people and behavior are constantly influencing each other.
Behavior is not simply the result of the environment and the person, just as the environment is
not simply the result of the person and behavior (Glanz et al, 2002). The environment provides
models for behavior. Observational learning occurs when a person watches the actions of
another person and the reinforcements that the person receives (Bandura, 1997). The concept of
behavior can be viewed in many ways. Behavioral capability means that if a person is to perform
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a behavior he must know what the behavior is and have the skills to perform it (Glanz et al.,
2002).
Method
This phenomenological study utilized the modified van Kaam method by Moustakas
(1996) with structured and taped interviews to explore the lived experiences of parents of a child
with Autism Spectrum Disorder with regard to the phenomenon of social support. A purposeful
sampling method was utilized in order to identify 10 individuals who identified themselves as
having had the experience of parenting a child with Autism Spectrum Disorder and dealing with
social support issues. The researcher along with the assistance of three student volunteers, asked
open-ended questions and captured, transcribed, and assessed the taped interviews. Data was
analyzed based on based on Moustakas’ (1996) modified van Kaam method of analysis in order
to clarify the lived experiences of parents who had a child with Autism Spectrum Disorder and
their experience with social support.
The research questions for this qualitative phenomenological research study have a
primary purpose of discovering the essence of the phenomenon of parenting a child with Autism
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Spectrum Disorder with regard to social support through the exploration of the lived experiences
of 10 parents. Six questions were central to the research:
1. When did you notice that your child was showing symptoms of autism?
2. How old was your child when he/she was diagnosed?
3. Do you receive any help?
4. Tell me about a typical day that you spend with your child?
5. What would make caring for your child easier for you and your family?
6. Does having a child with autism influence in any way the functioning of your family?
The modified van Kaam method is a qualitative methodology chosen as the appropriate
method for this study because it values the meaning of events experienced and described by
human beings and explores the descriptions of experience. Van Kaam (1966) defined his
methodology as “a method in psychology [that] seeks to disclose and elucidate the phenomena of
behavior as they manifest themselves in the perceived immediacy" (p. 15).
Each participant received a form entitled Informed Consent explaining the nature and
purpose of the study and an explanation of the participants’ role. All consent forms stayed in the
researcher’s possession and were not shared with any other individual. The transcription will be
destroyed to ensure confidentiality. Additionally, the researcher took and successfully completed
the Human Subjects Training online. Lastly, in order for the transcription to be accepted into the
study, each participant was asked to provide a signed Consent to Participate form and offered the
opportunity to review the results of the study.
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Figure 1. Modified van Kaam Method (Moustakas, 1996).
Qualitative Phenomenological Research Design
Identify 10 parents of
ASD children with regard
to social support
Purposeful Sampling
Taped Interviews
Comprised of 6 of the
Same questions
Data Collection
Confirm accuracy of
transcriptions
of the taped interviews
Data Analysis
Horizontalization & Reduction/ Elimination
Identify Themes Pertaining to Social Support
Cluster and Validate
Of each participant
Define Textural Descriptions
Define Structural Descriptors
Composite Description of the
Parent Narrative
Findings
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Textual and Structural Description
Difficulties with the Education System
Effective communication and collaboration between parents and teachers and other
professionals is increasingly viewed as an important factor in the education and treatment of
children diagnosed with ASD (Dillenburger, Keenan, Doherty, Byrne, Gallagher, 2010).
However, in Malta there exists a barrier in communication between parents and the support
systems. The authorities, from the head of the school down to the LSA’s, do not want to
acknowledge the presence of ASD in their school. When teachers are assigned a whole
classroom of children, it becomes difficult to specialize in individual care. They do not have the
background capable of properly teaching a child with ASD without disrupting the methods used
for the rest of the classroom. This is where the system needs to be reevaluated. Professionals or
technology could be beneficial, however, the school does not allow for this in their budget. One
mother comments, “There are meetings for the teachers done through the speech and language
department about how can you cater for a child with autism/ how can you help a child with
autism/ what systems there are. They don’t go to these meetings and when they have these
meetings at the end of school they don’t call a speech therapist, they offer them to deliver these
courses in the school through out these developmental meetings.” In Malta, its been made clear
that the agenda of the parents is very different from the agenda of those in the educational
system. Another mother states, “ I feel stupid every year, I have to meet with an LSA and teach
her how to teach my son.” Parents of children with ASD are just looking for their child to get an
education equal to that of the other children. Its clear the fuel behind their frustration is the
difficulties they are experiencing through the education system.
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Lack of Support
Autism is a pervasive disorder, meaning that it life-long and affects those with the disorder at
each stage of development and growth. A diagnosis can be delivered quickly, but once it is said
it does not go away. One mother stated: “I’ve been told my son had autism in two seconds and I
had to deal with it for the rest of my life. I wasn’t given social support, no psychology support,
because I was given a speech pathologist and an OT. And then they told me he will have an
LSA at school.” After the initial diagnosis, the parents generally stated that they lacked any
further support unless they sought it out. In Malta, the social support systems branch from the
government and through to the education and medical care systems. In general, the parents
interviewed agreed that the support was lacking and the recognition of ASD was overlooked.
The parents acknowledged that they received financial support, but they made it very evident
that the funds were insufficient to support a child with autism’s care.
“ I have to pay for the speech pathologist privately…..I pay for everything privately…..I only
get support of 18 euro’s a week only. Everything we have to pay besides the schools. He
doesn’t have an OT anymore ….”
The lack of financial support and professional support requires parents to make sacrifices in
the care for their child. The social support of ASD requires many parties to work together for the
most beneficial outcomes. In Malta, the parents comment that, “they resist changes a lot in
Malta. Everyone wants to work with his or her own agenda. …… The school agenda, speech
therapist agenda, OT agenda and they never see our side as a whole.” Without a centralized goal
and plan between these organizations, the perception of support will continue to be that support
is lacking and care is not ideal.
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Unacceptance by Others
Lack of awareness seems to be a common theme in Malta. It’s difficult for parents to
bring their children out in public for fear of how others who do not know what ASD is will react.
One parent comments that, “autism is very much like a social stigma so parents many times, they
stay back. They don’t search for the services because they are afraid of the stigma.” Parents are
embarrassed of the judgments from others. Another parent states, “socially unaccepted, they are
scared of the behavior. So they are looked on as unruly children. Some parents do not go out, to
not been seen as bad parents.” It is every parent’s worst nightmare to be seen as a bad parent.
You want to do everything possible to raise your child the correct way. Maltese parents resort to
hiding their children for fear of this judgment. Many Maltese do not know anything about ASD,
they judge a child with ASD’s behaviors as a result of bad parenting.
Lack of Support from Speech Language Pathology
Speech-Language pathology is a primary intervention for children with ASD in Malta.
This method of engagement has potential to target the symptoms associated with the triad of
ASD. Speech-Language pathology services claim to assist children in communicating,
interacting socially and even in some ways with relieving frustrations with repetitive behaviors
and routines. If a child with Autism is able to communicate their frustrations, either verbally or
nonverbally, it could relieve stressors for both parents and children. Again, there is a
miscommunication between those providing the service and those looking to utilize the services.
Parents expressed concern with getting an appointment to see a speech therapist as well as
frustration in not being kept up to date with teaching methods utilized with their children:
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“I didn’t realize I could go to a speech therapist without being referred, because I could
have done early intervention with speech and it took me 8 months … this got me really
angry”
“I was never given by the speech therapist a goal to work on. When I saw nobody was
giving him a system of communication I started the communication book myself. I had
to stop services with the professionals because they were at my back that I started a
communication book. They were very angry because we don’t use that system.”
Speech pathology is established in Malta and has facilities geared towards these services. The
frustration seems to lie in the parent’s perceptions of their experiences with speech language
pathology. There is a lack of effort put forth by the professionals in being available for
appointments and communicating challenges and goals with parents.
Parental Exhaustion
Many are not aware of the struggles that come with raising a child with ASD. These
parents did not choose to sign up for this however they will do whatever it takes to give their
child a good life. Raising a child with ASD can put major stress on family life. One mother
comments, “Frankly I have to work three jobs to support the expenses we ran into and like she
said in four months I received 90 Euros of social benefits and I spent 50 a week and he had to
have three jobs for me not to work and then we decided we have to share. Still it’s a lot of
pressure on the family and my other daughter is trying to live to find a life.” It becomes difficult
to raise a child financially if you are not wealthy enough or are not receiving any aid. It can lead
to marital tension, physical exhaustion, and difficulties balancing your time with your other
children? Another parent comments about the support received stating that, “You know, this is
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what I think, we cannot keep doing stuff which is not our role to do because that is when we lose.
You know, this year I ended up in a physical exhaustion, I could barely walk, because every year
we are in and out and we are worrying about him and what he is going to do.” Parents need a
break every once and while too and without the proper support systems available for their
children, they may never catch a break. At the rate autism is growing, this frustration is only
getting worse. The system needs to be reevaluated in order for parents to feel they are receiving
the adequate support services to minimize parental exhaustion.
Conclusion
The study assessed parent's experience of receiving and utilizing social support for
children who have ASD. It was found that Maltese parents do not perceive that they receive the
appropriate social support systems to help raise their child with ASD. Parents have generalized
frustration with the lack of support, unacceptance by others, exhaustion, and difficulties with the
educational system. There is a need for an organized structure of support and recognition that
ASD is present in their country and requires attention.
Limitations and Recommendations
This study aimed to examine the insight of Maltese parents on their experience of
receiving and utilizing social support for their child who has ASD. This study met it's purpose
with few limitations. The limitations identified by the researchers related to not including
information in regards to the actual services available, such as independent and government run
services, which may or may not have been utilized by the parents in this study. The researchers
were able to present the views of this group of parents, but future studies could find differing
opinions in the experience of a different group. Future research may be done to offer broader
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views as well as offer prospective from both the professionals and the parents on what is
available and what could be changed.
There are a number of recommendations that would help to limit the parent’s frustration.
One is to increase awareness and acceptance of Autism. This is important because for a problem
to be addressed there needs to be awareness that a problem exists and that there is a need for
improvement and for services. The communication between parents and professionals needs to
be improved so they will be able to work together more easily. It is also recommended to
develop a training program for workers in the educational system to learn skills on how to work
with children with Autism. This will help to ensure that the children with Autism are taught the
right behaviors and will receive the most benefit from their education.
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