Becoming Autonomous Parents in Giving Intervention to Children
with Autism
Is It Possible?
Herlina Herlina and Rudi Susilana
Universitas Pendidikan Indonesia, Bandung, Indonesia
herlinahasan_psi@upi.edu
Keywords: Independent Intervention Program, Parent Training, Autism Spectrum Disorder.
Abstract: Children with autism spectrum disorder (ASD) need intervention to deal with social interaction difficulties.
However, the fact that intervention may cost a lot of money on the one hand and that parents have potentials
to overcome their difficulties on the other hand has inspired initiative to involve parents in giving intervention
to children with ASD. Studies have shown that parent training, social skill training group, and cognitive
behavioral therapy are useful and promising intervention strategies for improving children's social skills. This
study was aimed at studying the effectiveness of parent training in improving of parents’ skills and
independence in designing and implementing the individualized social skills intervention program and the
effectiveness of parental independent intervention in improving children with ASD. This study was carried
out in two phases involving two group of subjects: parents in the training phase and children in the intervention
phase. The results showed that the independent intervention program was effective in improving the parents’
skills and independence in designing and implementing the individualized social skill intervention program
and that parental intervention was effective in improving the social skills of his child diagnosed with ASD.
1 INTRODUCTION
Autism spectrum disorder (ASD) frequently affect
negatively social skills. This has caused children
diagnosed with ASD a lot of problems in their school,
social, and work environments. As a result, they lack
confidence, have low self-esteem, feel anxious and
depressed, and have mental difficulties. Low social
skills also make them prone to bullying. Therefore,
children with ASD need early and intensive
intervention. Early, intensive, and proper intervention
will help them improve social skills (Stone and
DiGeromino, 2014). However, therapy may cost them
a lot of money. Jarbrink et al. (2006) suggest that
autism intervention requires substantial amount of
money. Similarly, according to Wang et al. (2013),
children with ASD need an intensive and long-term
treatment, so the cost becomes greater than that of
other disorder intervention. In this regard, Poling and
Edwards (2014) said that in developed countries
expensive education is often protested because it only
benefits some children. Many advocacy groups, such
as Autism Speaks, The Autism Advocacy Network,
Autism One, Moms on a Mission for Autism, and
Unlocking Autism, are lobbying for politicians to
provide financial support for research and autism
treatment.
A study conducted by Kim et al. (2011) in South
Korea showed that two-third of ASD cases of
research sample taken from a population in general
schools were undiagnosed and untreated. A study by
Salomone et al. (2015) on parents in 18 European
countries showed that in several countries 64% of
children with ASD had never received intervention at
all, 64% received speech and language intervention,
and 55% received intervention of relationship,
development, and behavior. Howell, Lauderdale-
Littin, and Blacher’s (2015) study revealed that 94%
of parents who became the respondents were helpless
in finding intervention for their children because their
ignorance of the availability of such services.
In Indonesia, autism therapies are not affordable
by all. As suggested by the chair of Indonesia Autism
Foundation, Melly Budhiman, a one hour autism
therapy costs about IDR 50K to 250K. Ideally,
autistic children need a four hour therapy a day.
Assuming that a one hour therapy costs IDR 75K, a
month of therapy will cost IDR 7.5 million or around
USD 555 (Media Indonesia Epaper, 2014).
218
Herlina, H. and Susilana, R.
Becoming Autonomous Parents in Giving Intervention to Children with Autism - Is It Possible?.
In Proceedings of the 1st International Conference on Educational Sciences (ICES 2017) - Volume 1, pages 218-224
ISBN: 978-989-758-314-8
Copyright © 2018 by SCITEPRESS Science and Technology Publications, Lda. All rights reserved
The above explanation shows that it is not easy for
children with ASD to get intervention, but there is no
excuse for not giving them early intervention.
2 PREVIOUS STUDIES
Previous studies showed that parents could be a
reliable resource for early intervention. Parent
participation plays an important role in the giving of
intervention to children with ASD (Negri and
Castorina, 2014; Elder, 2013; Shie and Wang, 2007)
and makes therapy effective and low-cost (Rudy,
2013). The philosophy of treatment in the family
context is to develop the children optimally by giving
them family-centered early intervention (Iversen, et
al., 2003). The family-centered early intervention
aims at improving baby and early childhood
development and minimizing the potentials for
developmental delays through increasing family
capacity in dealing with baby and children with
special needs (Dunst, Bruder, and Espe-Sherwindt,
2014). This aim indicates that parents should be
sufficiently competent in giving effective early
intervention.
Effective early intervention has encouraged
parent training so that the parents can treat their
children at home. Studies have shown that parent
training, social skill training group, and cognitive
behavioral therapy are useful and promising
intervention strategies for improving children's social
skills (Autism Ontario, 2012). Some studies have
shown the advantages of empowering parents in
giving autism intervention; among others are:
facilitating generalization and skill maintenance and
cost-cutting (Relate to Autism, 2010), decreasing
parents’ stressor and increasing optimism
(McConachie and Diggle, 2007), parents can manage
their life, solve problems, and make decisions
effectively (Shie and Wang, 2007), parents become
skillful in implementing their newly learned skills
(Beaudoin, Sébire, and Couture, 2014), and providing
prognosis and better long-term quality of life (Elder,
2013; de Bruin et al., 2015).
However, the common weakness of the
implementation of the offered training programs is
that the parents are only trained to implement
intervention program designed by professional
therapists. Studies have revealed that: 1) the
professionals in parent training program is frequently
viewed as well-trained experts in giving intervention,
so they act as the decision makers in designing
education for children with special needs, and the
parents only act as passive information receivers, 2)
the professionals are too dominant in the parent
empowering program, 3) the program is clinician-
oriented and sometimes does not meet the family
needs, 4) some parents find difficulties in giving
intervention to their children (Shie and Wang, 2007).
Korfmacher et al. (in Dunst, Bruder, and Espe-
Scherwindt, 2014) suggest that many models and
approaches to engage parents in early intervention
program are done as a part of home visit program of
professionals who provide support and training to
parents in improving their children development.
Özdemir (2007) argues that to consistently focus on
parent participation, family service, and early
intervention outcomes, early intervention
practitioners should apply theories and home visit
practice better.
Based on the aforesaid description, it could be
said that in the existing intervention training, parents
still rely on professional therapists in designing
intervention program/curriculum and professional
home visit plays an important role in the
sustainability and the effectiveness of intervention.
When confronted with the limited availability of
professional therapists and the high cost of
curriculum designing, this reliance will potentially
hamper the sustainability of the intervention. On the
other hand, there is no scientific evidence that parents
can be sole intensive behavioral intervention
providers for children with ASD (Tomaino,
Miltenberger, and Charlop, 2014).
Therefore, it is necessary to design an intervention
program that is not only beneficial for children
development, but also can train parents’ self-reliance
in developing, implementing, and evaluation an
intervention program. The self-reliance, the
researchers assume, not only can make intervention
effective and efficient, but also sustainable and
responsive to the progress of the children.
The solution is to empower parents’ self-reliance
in designing and giving intervention to the children
with ASD. There are two major things to train to the
parents: conceptual understanding about ASD, social
skills, intervention, and individual intervention
program and practical skills in designing the program
and techniques of individualized intervention. And
the professionals train the parents’ self-reliance
through training, workshop, mentoring, and
monitoring the implementation of intervention. In
addition, parent empowerment should take into
account the following aspects of adult people: (1) the
need of parents to know what to train, why they
should participate in the training, and how the training
is implemented, (2) parents’ concepts about their self-
reliance and skills in the training, (3) parents’
Becoming Autonomous Parents in Giving Intervention to Children with Autism - Is It Possible?
219
background experience, (4) parents’ readiness to
participate in the training, (5) parents’ motives in their
participating in the training, and (6) parents’ learning
motivation (Knowles, Holton, and Swanson, 2005).
A well-designed and well-implemented
empowerment program is expected to improve
parents’ self-reliance in designing, implementing,
and evaluating social skill intervention program for
their children in accordance with the natural condition
of their children and family. That way, the
intervention will continue be sustainable and develop
in accordance with increasing environmental demand
for children. As a result, children’s social skill will
continue to develop in accordance with their needs.
In brief, the research framework is illustrated in
Figure 1.
Figure 1: Research framework.
Parents of children with
ASD who have
limitation in knowledge
and skills about ASD
intervention
Training for prarents of
children with ASD:
Concepts aboutf ASD,
Concepts about Social
skills, Concepts about
ASD intervention,
Concepts about
individualized
intervention program
Workshop for parents of
children with ASD:
Design the
Individualized
Intervention
Program
Practice the
intervention
techniques
STAGE I ACTIVITY: TRAINING AND WORKSHOP FOR PARENTS OF CHILDREN WITH ASD
Parents of children with
ASD who are able to give
intervention independently
Children with ASD who
have limitation in social
skills
STAGE 2 ACTIVITY: PARENTS INTERVENTION TO
CHILDREN
The social skills of
children with ASD
increase
ICES 2017 - 1st International Conference on Educational Sciences
220
3 METHODS
The study was carried out using a quasi-experimental
design. The use of this this design was: 1) test the
effectiveness of training to improve parents’
capability in designing individualized social skill
intervention program for their ASD children and 1) to
test the effectiveness of parental intervention to
improve their ASD children’s social skills.
The research subjects were 6 parents and their
ASD children. The parents were chosen as the
subjects based on the following criteria: 1) to have an
ASD child, 2) to be able to read and write, and 3) to
be willing to participate in the research. And the
children were chosen as the subjects based on the
following criteria: 1) to suffer from ASD with low
and moderate severity and 1) to be 5-7 years old.
The research instruments were: 1) parents’ self-
evaluation questionnaire on their capability in
designing the intervention program before and after
the training, 2) assessment sheets of the intervention
program contents prepared by the parents, and 3)
observation sheets used by the parents to assess their
children’s social skills after the parental intervention.
The children’s social skills assessment was carried
out every week during six weeks.
Data of parents’ capability in designing the
intervention program were analyzed quantitatively
using Wilcoxon Signed Rank with significance level
(α) of 0.05. The result of analysis of parents’ self-
evaluation data was used to figure out the
effectiveness of training in improving parents’
capability in designing the intervention program. The
assessment by the researchers used a 1-3 scoring
scale: 1 if the content of the program is not
appropriate, 2 if less appropriate, and 3 if appropriate.
Parents’ mean scores were grouped into three: “Not
Capable” if the mean score <1, “Quite Capable” if the
mean score = 1-1.49, and “Capable” if the mean score
= 1.5-2. The result of researchersassessment was
used to enrich the data of parents’ self-evaluation.
Data on children’s social skills after parental
intervention were analyzed qualitatively by seeing the
frequency of social skills consistently displayed by
the children per se every week. The assessment was
conducted for six weeks. The social skill display
frequency was divided into four, from the lowest to
the highest: “Almost Never” if the children almost
never displayed social skills trained by their parents,
“Occasionally” if they displayed them at times,
“Often” if they frequently displayed them in multiple
places or occasions to certain people, and “Almost
Always” if they consistently displayed them in
multiple places and occasions to many people. The
success of parental intervention to their children was
seen from the consistent frequency of social skills
displayed by the children.
4 RESULTS AND DISCUSSION
4.1 Results
Based on parents’ self-evaluation result, the parents’
capability in designing the intervention program pre-
and post-training can be seen in Table 1.
Table 1: Mean score of parents’ capability in designing the
intervention program pre- and post-training.
PRE
GAIN
2.86
3.71
Table 1 shows that parents’ capability in
designing the intervention program improved after
the training. Based on the non-parametric Wilcoxon
Signed Rank test using the significance level of 0.05
by means of SPSS version 20, the difference was
significant, 0.017 (p<0.05). Since p<0.05, so H0 was
rejected. In other words, the parents’ capability in
designing the intervention program improved
significantly after the training. Therefore, it can be
said that the training was proven to be effectively
improve parents’ capability in designing intervention
program for their ASD children.
Table 2 presents the researchers’ assessment score
of the content of the intervention program.
Table 2: Mean score of parents’ capability in designing
intervention program based on researchers’ assessment.
Subject
Mean
Score
Category
of
Capability
1.
1.97
Capable
2.
2
Capable
3.
1.71
Capable
4.
2
Capable
5.
1.66
Capable
6.
1.8
Capable
Table 2 shows that all parents were capable of
designing the intervention program appropriately.
Assessment of the effectiveness of parental
intervention is based on a parents’ weekly assessment
after the children received the intervention. The
intervention data were obtained after the parents gave
Becoming Autonomous Parents in Giving Intervention to Children with Autism - Is It Possible?
221
interventions at least within 6 weeks. The parents
recorded the consistent frequency of social skills
displayed by their children by providing qualitative
assessment: Almost Never, Occasionally, Often, and
Almost Always. Table 3 shows that all children, on
every aspect of social skills, displayed improved
frequency of social skills despite that the
improvement took place in different weeks.
Table 3: Consistent frequency of social skills displayed by the children.
SUBJECT
SOCIAL SKILL ASPECTS
WEEK
0
1
2
3
4
5
6
7
1
Conversational skills
OC
OC
OC
OF
OF
OF
OF
-
Play skills
OC
OC
OC
OC
OF
OF
OF
-
Understanding emotion
OC
OC
OC
OC
OF
OF
OF
-
Dealing with conflict
OC
OC
OC
OC
OF
OF
OF
-
Friendship skills
AN
AN
AN
OC
OF
OF
OF
-
2
Conversational skills
OC
OC
OC
OC
OC
OF
OF
-
Play skills
AN
AN
AN
AN
AN
AN
OC
-
Understanding emotion
OC
OC
OF
OF
AA
AA
AA
-
Dealing with conflict
AN
AN
OC
OC
OC
OF
OF
-
Friendship skills
AN
AN
AN
AN
AN
AN
AN
-
3
Conversational skills
OC
OC
OC
OC
OF
OF
OF
-
Play skills
OC
OC
OC
OC
OF
OF
OF
-
Understanding emotion
OC
OC
OC
OC
OC
OF
OF
-
Dealing with conflict
OC
OC
OC
OC
OC
OC
OC
-
Friendship skills
OC
OC
OC
OC
OC
OC
OC
-
4
Conversational skills
OC
OC
OC
OC
OC
OF
OF
AA
Play skills
OC
OC
OC
OC
OC
OF
OF
-
Understanding emotion
OC
OC
OC
OC
OF
OF
OF
-
Dealing with conflict
OC
OC
OC
OC
OC
OC
OF
OF
Friendship skills
OC
OC
OC
OC
OC
OC
OF
OF
5
Conversational skills
OC
OC
OC
OC
OF
OF
OF
-
Play skills
AN
AN
OC
OC
OC
OF
OF
-
Understanding emotion
AN
AN
AN
OC
OC
OC
OC
-
Dealing with conflict
AN
AN
AN
AN
OC
OC
OC
-
Friendship skills
AN
AN
AN
AN
AN
AN
AN
-
6
Conversational skills
AN
AN
AN
AN
OC
OC
OC
-
Play skills
AN
AN
AN
OC
AN
AN
OC
-
Understanding emotion
AN
AN
AN
OC
OC
OC
OC
-
Dealing with conflict
AN
AN
AN
AN
OC
OC
OC
-
Friendship skills
AN
AN
AN
OC
AN
OC
OC
-
Note:
AN = Child almost never shows social skills behavior
OC = Child occasionally shows social skills behavior
OF = Child often shows social skills behavior
AA = Child almost always shows social skills behavior
Week-0 = social skills before intervention
Week-1 etc. = social skills after intervention
4.2 Discussion
Based on Table 4.1 and 4.2, it could be said that the
training effectively improve the parents’ capability in
designing the intervention program in accordance
with the needs and condition of their respective child
and family. The parents were trained to design the
individualized social skill intervention program by
taking into account the factual condition and needs of
their children and family. The parents also received
feedbacks about their prepared intervention program
and were given opportunity to propose improvements
to the program format so as to make it appropriate and
easy to do. According to Kolb (2007), an effective
training has several characteristics; among others are:
to begin with assessment of parents’ needs about
training, parents are given opportunity to practice
what they learn from training in a natural family
ICES 2017 - 1st International Conference on Educational Sciences
222
setting, parents get regular feedback from the trainer
during the exercise, and parents are given opportunity
to develop the skills acquired during the training.
Referring to these characteristics, the training could
be said effective to improve parents’ capability in
designing the individualized social skill intervention
program. It was understandable that the parents found
some difficulties at the early stage since they were not
used to designing an intervention program for their
own children. This is in line with the result of Shie
and Wang’s (2007) research that in parent
empowerment training, the professional therapists are
usually dominant in designing and developing an
intervention program, and the parents act as passive
information receivers.
Based on Table 4.3, it could be concluded that
overall the parental intervention improved social
skills of the children with both low and moderate
ASD, and the improvement occurred in different
periods among them. The result of this research is in
agreement with that of Dunst, Bruder, and Espe-
Sherwindt’s (2014) research that parent participation
in an intervention is a very important component in
enhancing children’s learning and development. In
addition, this research also confirms the statement of
Nefdt et al. (2010) that a natural intervention
procedure is easy to be understood by the parents. A
natural intervention procedure is an intervention
procedure designed in such a way that it is relevant to
family habits and values, done in an environment that
the parents and children are familiar with, and using
daily media and activities.
5 CONCLUSIONS
This study has concluded that generally the
independent intervention program has successfully
empowered parents in providing intervention to their
children diagnosed with autism spectrum disorder.
Elaborately, this study has concluded the followings:
First, the independent intervention program was
effective in improving parents’ understanding about
ASD, social skills, intervention, and individualized
social skills intervention program for children with
ASD.
Second, independent intervention training and
workshop program was effective in improving the
affective function of parents of children with ASD.
Third, independent intervention workshop
program was effective in improving parents’ skills in
designing individualized social skills intervention
program for their children diagnosed with ASD.
Fourth, generally the parents were quite
independent in designing the individualized social
skills intervention program for children with ASD.
Fifth, generally the training and workshop
improved the parents’ skills in implementing the
social skill intervention for their children diagnosed
with ASD.
Sixth, the parental intervention with reference to
the individualized social skills intervention program
developed by the parents was effective in improving
the social skills of children with ASD.
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