Paper—Parents' Involvement in the Education of their Children with Autism: Related Research and its...

Parents' Involvement in the Education of their Children

with Autism: Related Research and its Results
https://doi.org/10.3991/ijet.v15i14.12509

Irene Chaidi ()

, Athanasios Drigas
Net Media Lab-Mind & Brain R&D, N.C.S.R. ‘Demokritos’, Athens, Greece
Institute of Informatics and Telecommunications, N.C.S.R. ‘Demokritos’, Athens, Greece
[email protected]

Abstract—Parents' active participation in the diagnostic and thera-

peutic process of children with developmental disorders is considered
by experts to be an important factor in the long-term struggle to educate
people with autism. According to relevant bibliographical references,
the benefits of parental education have been proven for dec-
ades. Researchers [1], [2] underline the positive outcomes of parent be-
havior training programs for children with developmental disabilities.
Surveys conducted to date show that results show parents can im-
plement the strategies they have recently learned and are generally very
pleased with parent's education programs. However, findings related to
children's communication and socioemotional skills, parent-child inter-
actions were unclear [3].

Keywords—Autism, parents, parent education Introduction

1 Introduction

In recent years, the need for active parental involvement in the diagnostic and ther-
apeutic process of children with different developmental disorders has been empha-
sized as it is now considered an important factor in the long-term outcome of major
difficulties. Emphasis is also placed on the importance of supporting and educating
parents to make use of their potential to promote the quality of life of the child and the
family [4].
The present work is a bibliographic review of research related to the education of
parents of children with diffuse developmental disorders and which focuses on the
active involvement of parents in the process of educating their children.

2 Autistic Spectrum Disorder (ASD)

Autistic Spectrum Disorder is a severe, widespread disturbance of a person's de-

velopment that accompanies the person throughout his or her life, affecting one's per-
ception, thinking and behavior and is characterized by a) significant difficulties in

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Paper—“Parents' Involvement in the Education of their Children with Autism: Related Research and its...

developing social and communication skills and mutual interactions. the person with
those around him, and (b) limited and repeated stereotypical interests and behaviors
[5].
ASD is diagnosed by comparing one's behaviors with the symptoms described in
the official Diagnostic and Statistical Manual of the American Psychiatric Association
and ICD-10 (International Classification of Diseases). of the World Health Organiza-
tion (WHO).
Both the current diagnostic criteria and the descriptions of modern Autism re-
searchers follow Wing's "Trinity of Social Interaction Disorders" [6]: a) Social Rela-
tionship Disorders - Incomplete Social Interaction - Interactivity, Emotional Deficits,
Communication disruption - incomplete communication and c) Disruption of social
understanding and imagination - lack of social understanding and imagination [7].
These three categories, with the revised version 5 of the DSM (DSMV), were re-
placed by 2 groups: a) social communication and b) stereotyped, repetitive behaviors,
activities, and interests.
It should be emphasized that children with ASD are highly heterogeneous about
concerning social disorder. Other children have a lack of motivation for interaction,
which in some cases avoids interaction, that is, they avoid touch and eye contact,
while others actively seek interaction but either lack empathy or interact interactively.
People with ASD also have a disadvantage in their emotional organization, resulting
in the difficulty of communicating with those around them, with the consequences of
socialization difficulties and their family [8].

3 The Role of Parents in Autism

In recent years, widespread developmental disorders have attracted the interest of

both parents and health and education professionals and constitute areas of great re-
search, clinical and social interest [9]. Research interest also focuses on parents and
the family in the field of autism as well as on the effectiveness of the early interven-
tion and parent education. It is generally accepted that the family is a key factor in
physical and mental development and that the child-family relationship is two-way as
parents influence the child, which in turn influences the parents [10]. Parents are also
"experts" in their child, they know it better than anyone and can provide any infor-
mation that will be valuable in their child's education and therapeutic approach. The
views held over many years about parents' responsibility for their behavior and the
upbringing of their child in the emergence of autism today are unacceptable. Today,
the emergence of autism is considered to be the result of organic causes and the con-
tribution of parents in coping with the difficulties of the crucial disorder [11]. Parents
are considered co-therapists [12], can provide necessary information about the child's
daily life, development and course, participate actively in treatment, support the ther-
apeutic-educational process, and play a leading role in claiming the rights of their
child, 115 in educating and supporting other parents in coping with the difficulties and
negative emotions resulting from having a person with autism. However, one factor
that can have a positive impact on the role of parents in making use of their potential

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is quality cooperation with specialized health and education professionals specializing

in the field to ensure the development and quality of life of their child. [4]. According
to a statement from the Department of Education and Science in Great Britain [13],
“effectively addressing the needs of people with developmental disorders depends on
the full involvement of parents. The relationship between them and health and educa-
tion professionals is crucial to the child's development. Parents need information and
clear guidance to support the efforts of professionals, while it is impossible for profes-
sionals to meet the needs without valuable knowledge of the parents about their child
"

4 The Role of Parents in the Educational Program

The role of parents in the therapeutic program is considered as cited as therapeutic

because their involvement is considered as important as that of the special educa-
tors in achieving the best possible results and is deemed necessary and consistently
rather than occasional.
The involvement of parents in the treatment program can play a decisive role in the
outcome of treatment. The systematic training of parents helps to regain their lost
confidence and reduce their stress to meet their parental role requirements. According
to researchers [14], [15] and [16] the reasons why parental involvement is necessary
are: a) the multiple needs of children with ADHD and their chronic nature, b) the dif-
ficulties that show: sleep disturbances, eating disorders, anger bursts, etc., c) difficulty
adjusting to new environments, d) behavioral problems, e) difficulty in generalization
and f) difficulty in retaining acquired knowledge, skills, etc, without systematic and
continuing education. Parenting experience and knowledge may seem to be the major
contributors to the successful education of children with autism, and the absence of
parents from the design and implementation of any program implemented can be a
factor in failure. When parents and teachers look for ways to help the child, each with
respect for each other's experience, they can develop new educational approaches that
might not have been developed without this type of work [17],[18]. The life of a child
with autism continues at home and with his or her family, so educational programs
implemented to include at all stages the parents of children with autism can only be
achieved with bona fide and consistent cooperation. teachers and parents [19].

5 The Education of Parents

The education of their parents enables them to participate in their child's treatment
program to enhance their learning progress and improve their behavior. The parenting
tools of children with autism and the techniques used to contribute to better parenting,
with the primary and primary purpose of their education being to develop a relation-
ship of trust and appreciation between the educator-therapist and the parents. The
program also builds on the individual goals of each child that are prioritized based on
their needs and abilities.

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6 Method

The present work reports recent research on the usefulness of parent education as
well as school education for children with an autism spectrum disorder to participate
in the education of their children in collaboration with specialists.
One of the interventions investigated was inclusive education, that is, co-education
of normal and autistic children in the classroom. Researchers [20] conducted action
research. The intervention program was carried out in the 1st-3rd nth grades, 4 urban
public primary schools in Rethymnon (Crete), at different times, as different interven-
tion-research projects (4 teams in total) were used, between the beginning of 2008 and
the end. 2011. 94 students (6-8 years) were in these classrooms at the time of program
implementation. Many of them (20-25) presented various difficulties that varied in
form, duration, intensity or severity and source. The results showed that teachers and
parents saw this intervention model very positively and gained significant knowledge
of practices related to their role.
Another intervention that was studied was early intensive intervention. Researchers
[21] reviewed 1,500 articles referring to studies of parent education of children aged
1-6 years. All referrals generated through the search strategy were transferred to an
EndNote Reference Program. The initial sorting of titles and summaries from the
search identified potential studies for inclusion. Studies that differed greatly from the
inclusion criteria were excluded, while those studies that appeared to be appropriate
were kept, i.e., those that appeared to be for intervention in children with an autism
spectrum disorder, and there was some reference to the role of parents. Critics evalu-
ated independently and selected studies to include from the remaining studies. Two
important results were found to favor parent training in one study: children's language
and mother's autism. Intensive intervention (involving parents) concluded that there is
good evidence for positive change in both parental perceptions and the implementa-
tion of strategies to improve the behavior of children with autism. Also, other re-
searchers [22] conducted questionnaires and interviews with 15 families who used
this intervention. When parents were asked to identify the aspects of intervention they
valued most, communication assistance was a topic that was strongly reported (out of
ten families). Some parents particularly emphasized how their child's developing lan-
guage and communication skills helped them become more integrated into the behav-
ior of families as well as the child.
Researchers [3] conducted a review of studies regarding the education of parents of
children with autism spectrum disorders. Systematic searches were conducted to re-
trieve studies in which at least one parent was trained to apply specific techniques to
their young children (0-36 months) who have been diagnosed with autism spectrum,
and finally, 15 studies, involving 484 children (mean age), were analyzed. 23.26
months). The results show that parents were able to apply the newly learned strategies
and were generally very satisfied with the parent training programs. However, the
findings on children's communication and socio-emotional skills, parent-child interac-
tions, and parental well-being were ineffective.
Other researchers [23] also reviewed studies that specifically analyzed 17 studies
from 6 countries (USA, UK, Australia, Canada, Thailand, and China), including 919

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children with autism. These studies were related to 117 interventions to enhance the
style of parent interaction and thus facilitate children's communication. The review
finds some evidence for the effectiveness of parent-mediated interventions, more spe-
cifically on central indicators in parent-child interaction, but also on more extreme
indicators of children's linguistic understanding and reduction in the severity of au-
tism. Evidence of whether such interventions can reduce parental stress is ineffective.
In an intervention study of correspondent teaching, researchers [24] applied the in-
tervention to a randomized control group of 19 preschool children from Turkey with
difficulties and their mothers, while there was also a control group. Compared to the
control group, mothers who participated in responsive teaching had significantly
greater increases in responsiveness and influence, while their children made greater
changes in their commitment or central behavior. There were also significant differ-
ences in children's developmental outcomes. Children in the responsive teaching
group improved their developmental outcomes by an average of 42% versus 7% for
the children in the control group.
Also, another study [25] experimentally applied 21 parenting interventions to par-
ents of preschool children with developmental disabilities. The results show that this
parenting intervention was superior to the usual care for young children with devel-
opmental delays or special needs in limiting negative parent-child interactions and
children's behavior problems. Participants in the experimental group showed high
satisfaction with the treatment. Besides, another researcher [26] studied the impact of
parenting programs for children with autism spectrum disorders on 79 parents who
represented 58 children using questionnaires. The questionnaires were used to evalu-
ate seven consecutive 11-session programs, and the results showed that the course
produced positive outcomes in terms of parent satisfaction, parent learning, and per-
ceived changes in children's behavior.
Other popular interventions are behavioral. In this area, researchers [27] applied
two interventions, 'parenting and counseling' and 'parenting education and behavior
management', to two groups of 35 individuals and had another group of 35 individuals
implemented no intervention. Parent education and behavior management led to a
significant improvement in adaptive behavior and autism symptoms at 6 months of
intervention for children with greater delays in adaptive behavior. Parent education
and behavior management were superior to parent education and counseling. Another
study [28] reviewed 18 studies of positive behavior interventions, and the findings
revealed that researchers reported general information about family partnerships. Fi-
nally, several years ago other researchers [2] had studied the effect of parenting be-
havioral training programs on 17 mothers and 2 fathers. Judges who were asked to
evaluate the positive impact of the parents worked in one-on-one training sessions
with their children. The parents applied either a highly structured, discriminatory test
procedure or a more naturalistic centralized education process. The results showed
that parents who applied the central training procedure were found to have more posi-
tive effects than those parents who applied the discriminatory test procedure.
The DIR / Floortime model is another intervention model that has been studied for
its effects. Specifically, researchers [29] applied the model to 68 children and made
videotape assessments before and after application 118 using the functional emotional

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Paper—“Parents' Involvement in the Education of their Children with Autism: Related Research and its...

rating scale. They found that 45.5% of children had good to very good improvement
in functional development. The same model was also investigated by other research-
ers [30] who performed functional effective development and symptom severity in 32
24-72- month- old children. It was found that after home-based DIR / Floortime inter-
vention at an average of 15.2 hours /week for three months, the intervention group
had significantly higher gains in all three measures adopted in the study: Functional
Emotional Rating Scale, Autism Rating Scale age and functional emotional question-
naires.
Also, researchers [31] applied the natural language example to 3 parents of chil-
dren with autism. The data collected through a questionnaire on parental involvement
indicated a great deal about the use of children's language and play. There was a shift
from mimicry at the beginning of the intervention to spontaneous language at the end
of intervention for all three children but also clear improvements in play for two out
of three children. In response to a social power questionnaire, parents indicated that
they found the study useful and the procedures simple and that they would continue to
use intervention at home after the study was completed.
Finally, other researchers [32] studied the effects of applying early triad interaction
on 1 Swedish family, making quantitative and qualitative observations. Compared to
other families without autistic children, the divergence occurred in the early triadic
synchronization, particularly when the girl was nine months old. At three months, the
girl participated in more sequences than the other children, at nine months, she paid
more attention to objects while at 18 months, she had less eye contact with her parents
and less shared focus, and at 48 months her language skills were poorly developed.
The mother focused on repeated observation-observations on the infant's age while
the father referred to deviations in the attention of the child and the negative devel-
opmental vocal skills of the child at 18 months.

7 Conclusions – Perspectives

Recent estimates of the prevalence of autism spectrum disorder (ASD) suggest that
at least one in 200 children is affected. This group of children and families has signif-
icant service needs. Parents' involvement in implementing intervention strategies de-
signed to help their autistic children has long been accepted as helpful. The potential
benefits are increased skills and reduced stress for both parents and children [21].
The results of the literature review have shown that there are positive effects on
parents' training in methods and strategic interventions, so that they can continue to
participate in the education of their children successfully in intervention, especially in
young children with ASD. However, the need to improve research in this area is em-
phasized as the need for researchers to understand and document the characteristics of
effective intervention in the families of children with ASD has been recognized. De-
spite the positive findings in research, scientists believe that there is a lack of infor-
mation about the specific strategies used to teach parents, the models used in educa-
tional programs, what kind of teaching or protocols are used, and how they are used. ,
if parental education is associated with intervention in the child, how do parenting

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programs evaluate which programs and with what outcomes do they relate to educa-
tion the parent [33]. Researchers [1] report that according to the literature review the
components studied in the studies are as follows: (a) the purpose of the parent educa-
tion or the target skills of the parent education program; whether or not the parent was
educated with the child present, (c) the ages of the target children, (d) the type of par-
ent education program, (e) the structure of the program materials used, (f) the fre-
quency of the program, (g) the duration of the program; (h) parent effects; (i) child
outcomes (j) the design research used to evaluate the parent education program, and
(k) whether or not the data was collected for the validity of the implementation of the
parent education program.
They detail that the purpose of parent education is to learn targeted skills that use
techniques to improve behavior or communication. In most studies it is evident that
mothers 'participation in education is high while fathers' is low. Also, several studies
indicate that it was present in maternal education and the child, while others do not
specify its presence. Another component of the surveys was the ages of children,
summarized in four categories, based on chronological-developmental age groups:
younger than 3 years, 3-5 years, 6-13 years, and more (over a range of ages 13 years).
Half of the parent education programs are aimed at parents of children between the
ages of 3 and 5, 17% for parents of children under 3, 10% for parents of children 6 to
13, and 23% for parents with children over 13 years old. The third component relates
to the form of delivery used and which are 3: a) one to one, b) a group in combination
with one to one c) not named. One aspect of the studies that is mentioned is the use of
the types of program materials, curriculum, or textbook. As noted in the studies, only
43% used some kind of training manual or provided a parenting manual that provided
process information. It is also noted that the duration and frequency of parent training
programs could not be classified as a fixed "total duration and frequency in hours"
was not presented. The effectiveness of educational programs is achieved by collect-
ing data in three main ways: (a) observational behavior; (b) standardized assessment;
and (c) maternal exposure research and are categorized as: a) skills improvement, b)
stress reduction. (c) reducing challenges; (d) increased knowledge either of their
child's behavioral or disability strategies in general; and (e) they are not named. Final-
ly, there is the design research used to evaluate the parent education program where
the majority of studies reported using a single-page case study to evaluate parent edu-
cation programs.

8 Prospects

According to researchers [34] future studies of early intervention for children with
ASD should be large enough for safe conclusions in statistical analysis, including a
long-term follow-up evaluation, at least one year schedule, and include a complete
evaluation. Studies should use widely recognized standardized tools to evaluate the
outcome in terms of children's social and communication behavior, skills, and sec-
ondary behavioral problems, to allow others to assess the level of clinical relevance.
Investigations should be designed in such a way as to have an appropriate degree of

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equilibrium, to be able to choose between two alternative 120 interventions with firm
beliefs about their relative efficacy by clinicians or participants. Balance is a require-
ment for RCT methodology, but it is particularly difficult to achieve research in
young children with ASD. The context in which future parents' intervention is to be
evaluated should be carefully considered as their education is not just a component of
early intervention for children with ASD because parents need not only initial training
in new skills but continuous support for their children. of their children. So in the fu-
ture, evaluations should consider what elements of intervention can be combined in
the most rational way to provide effective family care and support packages. After all,
autism is acomplex and multifaceted disorder with a range of severity, with "de-
mands" from parents, and families have a different ability to respond to additional
pressures such as actively supporting their children's educational program.

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10 Authors

Irene Chaidi is currently working as a special education teacher in Athens,

Greece. She is a Ph.D. Candidate in N.C.S.R. ‘Demokritos’, Institute of Informatics
and Telecommunications, Net Media Lab, and Mind-Brain R & D, Agia Paraskevi,
153 10, Athens, Greece (e-mail: [email protected]).
Athanasios Drigas is with N.C.S.R. ‘Demokritos’, Institute of Informatics and
Telecommunications, Net Media Lab, and Mind-Brain R & D, Agia Paraskevi, 153
10, Athens, Greece (e-mail: [email protected]).

Article submitted 2019-11-26. Resubmitted 2020-04-21. Final acceptance 2020-04-21. Final version
published as submitted by the authors.

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