Responsiveness of Parents in Early Detection and Access to Autism

Spectrum Disorder (ASD) Services

Hidayad Heny Sholikhah

, Rukmini

, Tumaji

and Fenty Dwi Noviani

National Research and Innovation Agency, Indonesia

Health Policy and Development Agency, Ministry of Health RI, Indonesia

Keywords: Autisme Spectrum Disorder (ASD), Responsiveness, Parents, Early Detection, ASD’s Services.

Abstract: The increasing number of Autism Spectrum Disorder (ASD) children requires more attention from all parties.

ASD treatment has massive impact on the quality of life for them and their families. Researchers interacted

with clients and families and were directly involved in services at the Research and Development Laboratory

for Children with Special Needs in Surabaya. The analysis was carried out on 33 family data of ASD children

who visited the Laboratory for Children with Special Needs in 2019. The results showed that 1) Parental

monitoring of children's growth and development was still lacking, 2) Parental responsiveness was still weak

in the early detection of ASD cases, and 3) Responsiveness of parents to access ASD’s services was shown

by the following phenomena; a) most parents brought their children to assessment or diagnostic services for

the first time when they were more than three years old, b) there was a shopping diagnostic phenomenon and

shopping for autism therapy. In conclusion, parents’ response to early detection of ASD children was still

lacking. Recommendations, it is necessary to socialize to provide training by related parties to each parent

about the importance of monitoring child development, stimulation, and early detection of children with

autism.

1 INTRODUCTION

Autism awareness day, which has been set on April 2

by the United Nations, can remind us about the need

for public awareness and support for the rights of

people with autism, including the right to determine

the direction of their development, independence, and

autonomy, as well as access to education and

employment on an equal basis (Ramadhani, 2021).

Individuals with autism are grouped in ASD (Autism

Spectrum Disorder). It is a group of

neurodevelopmental disorders that have

characteristics of impaired communication and social

interaction, limited interests, and repetitive behavior.

Early warning signs of ASD include at the age of 12

months, the child shows a lack of social interaction, at

the age of 18 months, the child does not use single

words that are meaningful, and at the age of 24 months

the child lacks interest in other children, and still

unable to use spontaneous two-word phrases.

Individual ASD severity and impairment vary greatly

(Tsang et al., 2019). Estimates of the individual

incidence of ASD are between 50-60 per 10,000

school-age children. Singapore stated that ASD was

the most common cause of “disease burden” in

children aged 0-14 years in 2004. Even other

references state that the incidence is 1 in 150

individuals. The American Centers Disease Central

(CDC) figure in 2018 states 16.8 per 1000 individuals,

which means that 1 in 59 children is autism. This

condition is an increase of 15% compared to 2014,

boys compared to girls is 4:1. Research on ASD

reaches 5000 studies per year (Directorate General of

Disease Prevention and Control, 2020).

Data on service visits at the Research and

Development Laboratory for Services for Children

with Special Needs, the Functional Implementation

Unit for Health Technology Innovation, the Research

and Development Center for Humanities and Health

Management shows that the number of ASD cases

dominates the number of visits, both for assessment

and therapeutic services, in 2019 at 50.8%, namely 33

cases out of a total of 65 cases of children with special

needs who visited. Children with special needs are

children who experience limitations or

extraordinariness compared to other children of the

same age, whether physical, mental-intellectual,

social, or emotional, which have a significant

Sholikhah, H., Rukmini, ., Tumaji, . and Noviani, F.

Responsiveness of Parents in Early Detection and Access to Autism Spectrum Disorder (ASD) Services.

DOI: 10.5220/0011662900003608

In Proceedings of the 4th International Conference on Social Determinants of Health (ICSDH 2022), pages 35-44

ISBN: 978-989-758-621-7; ISSN: 2975-8297

 2023 by SCITEPRESS – Science and Technology Publications, Lda. Under CC license (CC BY-NC-ND 4.0)

influence on the process of growth or development

(Winarsih et al., 2013). ASD is one of the types of

Children with Special Needs served at

Laboratory for

Children with Special Needs. There are several factors

that increase the risk of ASD, including

genetics/heredity, parental history of psychiatric

disorders, maternal age (≥40 years) and father (≥50

years) when having children, short intervals between

pregnancies (<2 years), non-specific factors during

pregnancy (including hypertension during pregnancy,

presence of bacterial/viral infection, family history of

autoimmune, fetal exposure to certain

drugs/psychotropics/insecticides), premature birth

(<32 weeks), and low birth weight (LBW) (Lord et al.,

2018). Although these factors are not clear as causes

or markers, children who have these risks should be

monitored for development during infancy to toddler

age.

Treating individuals with ASD was among the

most difficult and expensive treatment categories has

an impact on the quality of life for them and their

families (Bryson et al., 2004). Handling of Children

with Special Needs including cases of ASD (Autism

Spectrum Disorder) requires appropriate accuracy and

speed, starting from how parents recognize and

respond to early symptoms that appear at the early age

of a child's development to efforts to provide the

necessary interventions (Ministry of Health of the

Republic of Indonesia, 2016). ASD when diagnosed

on time and given early behavioral intervention and

intensive education can lead to better long-term

outcomes (Bryson et al, 2004; Zwaigenbaum et al ,

2019). Parents of ASD children have their own

challenges in carrying out this big role. Parents need

to have responsiveness or the ability to respond to

what their child is experiencing appropriately and

responsively. Parent’s response in carrying out their

role in supporting the handling of their children, will

increasingly positively impact children's

development. Responsiveness is the ability or form of

effort to provide or take action quickly and quickly

(Hamid et al., 2020; Hasnih et al., 2016). The role of

family and the closest community is very important in

providing support by creating a safe and comfortable

atmosphere while at home and providing assistance

for ASD individuals. Therefore, this study aims to

determine the responsiveness of parents in carrying

out the role of handling children with autism,

especially in the early detection phase. Therefore, this

phase is the starting point for handling the

development of the next autism child.

2 METHOD

This research was a qualitative descriptive research.

Data collection was carried out for 1 year 2019, in a

participatory way, researchers interacted directly with

ASD children and their families while providing

services at the Laboratory for Children with Special

Needs at the Health Technology Innovation

Functional Service Unit, Research and Development

Agency of the Ministry of Health of the Republic of

Indonesia. This study uses secondary data, secondary

data from medical record documents of ASD clients,

as well as qualitative data from families of ASD

clients that were collected by researchers in a

participatory manner for one year 2019. Medical

record documents containing records of the results of

history taking and assessment to clients and families,

as well as developmental records documents child

since birth and a record of the child's health history

attached to the medical record. Researchers interact

and directly involved while providing services at the

Laboratory for Children with Special Needs in

Surabaya. The secondary data analyzed were 33

families of ASD children who visited Laboratory for

Children with Special Needs in 2019. Laboratory for

Children with Special Needs is a service-based

research and development for children with special

needs. As a service-based research laboratory, in

carrying out its activities it is equipped with informed

consent, which consists of informed consent for

services (assessment and therapy) and informed

consent for research activities. Informed consent for

research activities, containing the consent of

parents/families of children with autism, that all data

contained in the patient's medical record documents

and questionnaires included in the service can be used

for research and development activities so that they

become material for publication, socialization and

advocacy for the improvement of children's services.

special needs.

The response of parents in the role of handling

children with ASD in question is how parents

recognize and respond to early symptoms of

developmental delays experienced by ASD children,

so that appropriately and in sufficient time they seek

assessment services and efforts to provide needed

interventions to professional service centers for

children with special needs. Descriptive data analysis

with tables and graphs, equipped with narration based

on qualitative data from parent/family statements

related to the aspects studied.

ICSDH 2022 - The International Conference on Social Determinants of Health

3 RESULT

3.1 Characteristics of Children with

ASD in the Laboratory for

Children with Special Needs

Based on data from visits to Laboratory for Children

with Special Needs, ASD children who access

services come from the city of Surabaya and

districts/cities around Surabaya (Gresik, Lamongan,

Sidoarjo, Mojokerto and Jombang). Table 1. shows

that the characteristics of ASD children were mostly

male (78.79%), aged >5 years (51.52%) and

domiciled in Surabaya (72.73%).

Table 1: Characteristics of Autism Children's Visits at

Laboratory for Children with Special Needs, 2019

No. Characteristics of Autism Children Amount (%)

1. Child's age

- < 3 years

- 3-5 years

- > 5

ears

4 (12,12)

12 (36,36)

17 (51,52)

2. Gender

- Female

- Male

7 (21,21)

26(78,79)

3. Domicile

- Surabaya

- Outside Suraba

24 (72,73)

9 (27,27)

Source: Secondary data in Laboratory for Children with

Special Needs Surabaya

3.2 Responsiveness of Parents in the

Role of Early Detection of ASD

Children

The response of parents in the early detection of ASD

cases (Table 2), shows that more than half do not have

a child growth record document (54.54%), most

parents begin to realize their child's developmental

abnormalities at the age of 2-3 years (48.49 %).

However, the majority of new parents seek help from

professional services for initial assessment or diagnosis

after the child was 3 years old or older (60.6%).

The responsiveness of parents in the role of

monitoring the growth and development of children

was indicated by the ownership of document records

of children's growth and development and filled in.

Most of the children in the study did not have

documented growth and development records from

birth. Even for children who have documents, the

recording and monitoring of children's development

Table 2: Parents' Responses in the Role of Early Autism Case

Finding and Accessing First-time Assessment Services.

No. Parents' Responses in the Role of Early

Autism Case Finding and Accessing

First-Time Assessment Services

Amount

(%)

1. Monitor and record children's growth

and development

- Yes

- No

(45,45)

(54,54)

2. Begins to recognize and feel a child's

developmental disorders, since the

child was:

- < 2 years

- 2-3 years

- > 3

ears

(42,42)

16 (48,

49)

(9,09)

3. The response of parents in responding

to symptoms of abnormalities in

children by accessing professional

assessment services

- Directly access professional

assessment

- Indirect

(45,5)

(54,5)

4. The time it takes for parents to be aware

of a developmental disorder in their

child to access assessment services

- < 1 year

- 1-3 years

- > 3

ears

(45,5)

(42,4)

(12,1)

5. The child's age when parents bring him

or her to a professional diagnosis or

assessment service for the first time:

- < 3 years

- 3-5 years

- > 5

ears

(39,4)

(45,4)

(15,2)

Source: Secondary data in Laboratory for Children with

Special Needs Surabaya

has not been done completely by parents. Some of the

signs that parents were starting to notice include;

cannot speak even though they were more than 3

years old, children tend not to focus, children tend to

play alone, cannot play and interact with other

children. The factor that caused new parents to realize

their child's differences was the parents' lack of

understanding about the child's developmental

milestones, so that when there was a difference or

developmental delay, it was not immediately

detected. In addition, the influence of the parent's

social environment seems to be able to trigger parents

to be aware of the differences in the development of

their children with other children. The awareness of

this difference arises because it was triggered by

moments when children gather with other children,

when parents gather with relatives or other children's

parents who asked about the child's developmental

abilities, until when the child had started school.

Responsiveness of Parents in Early Detection and Access to Autism Spectrum Disorder (ASD) Services

“…after observing from school, I just started to

realize that my child is different…” (Mama Ad)

"…after being asked what your child can do, I

think yes, my son can't speak yet." (mom Fr)

"I observed myself, how come my son is not

like his brother who can connect if he is taught,

this (child) does not understand, yes, he does

not understand. I urge my husband to want to

check at the HP Hospital..” (mama C)

There were 54.5% of parents still did not directly

access professional assessment services when they

begin to feel developmental disorders in children. It

was said directly if in less than 1 year after the parents

become aware of the child's developmental disorder,

they make efforts to access professional assessment

services. This study showed that parents need time

(not immediately), from the stage of starting to realize

the difference in their child's development to the stage

of immediately seeking professional assessment

services (diagnoses) early in their child. Parents still

feel the need to wait for children aged 3 years or more

to make sure. This was as stated by the following

parent respondents:

“…began to notice symptoms at the age of 3

years old, indifferent, unable to speak…”

(Mama Mt)

“I only realized when I was 3 years old,

because I thought later I would be able to speak

for myself” (Mama Zn)

"Ages 2.5-3 years old already said mama, papa.

But after a few months it was gone. Contact

does not exist. I think it will appear again."

(Mama Gy)

“I haven't…(don't want to check it out yet), I

wish I could teach myself. My husband also said

just wait, later it will be done." (Mama Fr)

3.3 Responsiveness of Parents in

Accessing Professional and

Non-professional Service Centers

for Children with Special Needs

The response of parents to access the professional

service center for children with special needs referred

to in this study includes all handling services for

children with special needs, both those that provide

assessment and therapy. These services consist of 1)

Professional staff in clinics or hospitals, namely

Pediatricians, Psychiatrists and Psychologists; 2)

Other professionals, namely other health workers at

hospitals and clinics who serve speech therapy,

behavioral therapy, occupational therapy (OT),

biomedical therapy, sensory integration therapy (SI)

and physiotherapy); 3) Children with special need’s

service centers, namely consisting of therapy centers,

Puspaga (Family Learning Centers), hospitals and 4)

Educational services at school, namely inclusive

schools, shadow teachers and regular schools.

Meanwhile, non-professional services were services

that were accessed by parents of children with ASD,

in addition to professional services such as traditional

health services or other services.

Figure 1. shows that most of the children who

visited

Laboratory for Children with Special Needs

Surabaya

had previously received professional

services at several children with special need’s

service facilities, most visited professional children

with special need’s service centers, namely

professionals (33 children), other professionals (25

children), children with special need’s service centers

(14 children) and education services (9 children).

There were even parents who seek help from

traditional (non-professional) services for 9 children.

Source: Laboratory for Children with Special Needs’s secondary

data.

Figure 1: Responses of Parents Accessing Professional and

Non-Professional Children with Special Needs Service

Centers who visited at Laboratory for Children with Special

Needs Surabaya 2019.

The phenomenon of professional shopping (doctors,

psychologists or psychiatrists) occurs in children in

Laboratory for Children with Special Needs

, as well as

shopping for therapy centers and other non-

professional services. Before accessing services at

Laboratory for Children with Special Needs

, their parents

were taken to various places, to confirmed the

diagnosis and tried to find various therapies that were

expected to be good for the child's development.

“After waiting in line for 4 months, the doctor

at dr. S Hospital gave a diagnosis of ASD.

Speech therapy was recommended. So far, he

had had speech therapy (4 years), smart kids

therapy (4 years), neurosensory, edutherapy,

occupational therapy, great class therapy at his

school (currently), studying at school using

shadow, and edutherapy at Ks”…. ”Ky was

Tenaga

Profesional (Sp.A,

Psikiatri,

Psikologi)

Profesional Lain

(Tenaga

Kesehatan

lainnya)

Pusat Layanan

ABK (Sentra

Terapi, Puspaga,

RS)

Layanan

Pendidikan

(Sekolah

inklusi/reguler,

shadow teacher)

Pelayanan

Tradisional (Non

Profesional)

Educational

at school

Professional

staff

Other

professional

Children with

special need’s

service centers

Traditional

ICSDH 2022 - The International Conference on Social Determinants of Health

advised by a school psychologist to go to the

Laboratory for Children with Special Needs because

they still can't focus, speech delays and they still

can't communicate in 2 directions” (mom Ky).

“Initially to Clinic A, SI therapy was suggested,

carried out for 1 year. After that, I went to P

doctor at N Hospital, it was recommended for

speech and occupational therapy, the therapy

had been since after clinic A, until now”… "In

addition, to Dr. Rt, it was recommended that

occupational and speech therapy again at clinic

T". "Then since school, accompanied by Mrs. A's

team, after being evaluated, it was recommended

to go to the

Laboratory for Children with Special

Needs

for consultation with dr. E" (mama Mt).

“…until the age of 4 years, take Gy to Al

(therapy center), for ABA therapy, until the age

of 5 years. Then to MH (therapy center) until

the age of 6 years. Been to dr RI too, got diet

therapy. School and accompanied by GPK at

home. Up to Mrs. L, because of her lack of

control over her emotions. Then it was

recommended to come here (

Laboratory for

Children with Special Needs)” (Mama Gy).

From the observations of researchers and discussions

during the service process, there were several reasons

for parents to do therapy and other professional

shopping, including; parents want the best treatment,

but unfortunately it was not based on sufficient

knowledge and understanding about autism. Parents

still did not understand which treatment had good

scientific evidence. In addition, parents' lack of

acceptance of their child's condition make parents

believe and continue to seek answers about their

child's recovery.

"I want the best for my sister (Ky), according

to what doctors, psychologists and friends

suggested" (Ky's mother).

“…hope Mt has good development, what is

suggested to be done…” (Mama Mt)”.

“…we continue to look for efforts because we

feel Gy's emotional development has not

improved. Still likes tantrums, hurting himself

and those around him…” (Mama Gy).

The impact of this professional and therapeutic

shopping was that the handling of children had not

been carried out in accordance with the priority needs.

A lot of time was spent on various therapeutic

services that were not yet mainstream. Whereas

children should received behavioral therapy, as the

first and foremost treatment, then followed by other

therapies that were really needed.

"I was 2 years old, I checked with Dr. St., after

waiting in line for 4 months, the doctor

diagnosed ASD". "Ky's age is now 6 years, 11

months". "Currently there is no two-way

communication. The focus is still lacking”

(Mama Ky).

"...if we want to add therapy here (Laboratory for

Children with Special Needs), the time for Mt is

not available, because it is in conjunction with

other therapies, yes, speech...". “….Mt is 5

years old now”. “I have been in therapy since

clinic A for 1 year, … to therapy at P Hospital,

speech therapy… and clinic T, yes it's the same”

(Mama Mt).

"Since after 1 year the speech is gone, pa and pa

are gone. until the age of 4 years, take Gy to

Al…., for ABA therapy, until the age of 5 years.

Then to MH age until the age of 6 years. Been

to dr RI too, got diet therapy. School and

accompanied by GPK at home. “I feel that Gy's

emotional development has not improved. Still

likes tantrums, hurting themselves and those

around them..". “Up to Mrs. L, because of her

lack of control over her emotions. Then it was

recommended to come here (Laboratory for

Children with Special Needs) "Gy's sister is now

10 years old" (Mama Gy).

The phenomenon of shopping therapy was one of the

reasons for 18 (54.5%) parents who did not directly

access professional assessment services. Parents got

information from various sources so that they

accessed other services (therapy) before coming to

professional assessment services, both professional

and non-professional therapy.

4 DISCUSS

The results showed that the characteristics of ASD

children who visited Laboratory for Children with Special

Needs

were mostly male, aged > 5 years and domiciled

in Surabaya. From this data, it was known that parents

had visited other professionals before visiting

Laboratory for Children with Special Needs, so that the

ASD children who visit were more than 5 years old.

These results also support that most people with

autism were men, compared to women (1:5)

(Kementerian PP&PA RI, 2018). Another study

found that most people with autism were firstborn

(45%) and boys (75%) (Asmika et al., 2006).

The response of parents to monitor the growth and

development of ASD children showed that more than

half did not have a document of child growth and

development records, while those who had

Responsiveness of Parents in Early Detection and Access to Autism Spectrum Disorder (ASD) Services

documents were mostly development records from

hospitals/clinics and had more than one document

(Card for Health/KMS, Mother and Child of

Health/MCH or KIA books, progress notes from

hospitals or clinics). This was in accordance with

Riskesdas data on ownership of MCH books,

showing that less than half of children aged 0-59

months had MCH books, namely 30.5% (2010),

30.9% (2013) and 49.7% (2018). Similarly, for

monitoring the growth of children in Indonesia, the

proportion of weighing children under five according

to the standard was still low, namely 45.4% (2007),

44.6% (2013) and 54.6% (2018). The development

index of Indonesian children aged 36 -59 months was

88.3 (2018), lower than neighboring Thailand's 91.1

(2015) (Health Research and Development Agency,

Ministry of Health RI, 2018). The response of parents

in monitoring children's growth and development was

very important to know if there were problems that

could be immediately addressed. Some of the roles

that parents need to play in dealing with children's

developmental disorders include; 1) monitor the

development of children starting from birth to the

present age, 2) identify early developmental disorders

in children, 3) immediately consult professionals

(doctors, psychologists, educators) for different

developmental symptoms in children, 4) find out the

needs therapy for children, 5) provide support for

children to get further treatment according to their

therapeutic needs, 6) support and assist children in the

process of developing their abilities (Ministry of

Health RI, 2016; Winarsih et al., 2013). Early

identification of ASD disorders is important. Experts

recommend that this detection screening be carried

out at the age of 18 months and the child should be

brought to a developmental service at the age of 24

months (Shanchack & Thomas, 2016).

In this study, most children accessed diagnostic

services for the first time at the age of more than 3

years. This is consistent with another study in which

African-American children on average accessed

diagnostic services after the age of 3 years, after

parents experienced concerns about language

development, behavior and child development for an

average of 23 months or nearly 2 years. Even in New

York and St. Louis, childhood diagnoses ranged in

age from 54 months and 80 months or more to 5 years,

respectively (Constantino et al., 2020). The cause of

parents accessing early assessment services when the

child was 3 years old and over in this study was due

to a lack of understanding of developmental

milestones and their hope for child development and

they did not record their child's development in the

context of independent detection based on the records

in the MCH’s book they had. Most parents need time

that was considered sufficient, in the range of 3 years

or even more than the child's age to ensure that their

child's development was normal or not. A study of

African-American children revealed that 35.6% of

families reported delays in accessing diagnostic

services and experienced significant waiting time to

saw a professional (Constantino et al., 2020). Parents

spend varying lengths of time ready to access

professional services for their children. The

experience of parents describes them going through

several steps before understanding the signs that lead

to symptoms of autism in their children, starting from

questioning the signs of a child's delay, knowing that

something was wrong in a child based on meanings

and interpretations built by parents themselves or

influenced by external interactions, to leading at the

stage of realizing that there was something different

in a child's development to be suspicious of the

symptoms of autism (Gentles et al., 2020).

This study showed that parents had made efforts

to access many children with special need’s service

centers, both professional and non-professional. The

most visited professionals were pediatricians. Most

parents tried to access more than 1 type of service for

therapy, while access to education services was more

to regular and inclusive schools. There were also

ASD children who use traditional health services or

non-professional workers. This search for many

professional services was also experienced by

African American ASD children, in fact around

41.6% reported parents seeking many professionals

before receiving a diagnosis of ASD for their child

(Constantino et al., 2020).

Professionals must be aware of and sensitive to

early behavioral patterns of ASD, thereby promoting

reliable early diagnosis. So that they can become a

referral center for parents to consult. The results of the

study stated that early ASD behaviors in infants and

toddlers that can be identified early are 1) Social

attention aspects, namely lack of eye contact, social

interaction, social smiles, imitation, orientation to

name calls, appropriate facial expressions and interest

and pleasure in people. other; 2) Communication

aspects, namely lack of vocal communication, joint

attention skills (following points, monitoring gazes

and object/event references), behavioral

abnormalities, gestures and hypersensitivity to sound

(Barbaro & Dissanayake, 2009; Truffino &

Villamisar, 2004). However, poor families living in

the state were less likely to access professional

services for early detection. Other barriers to access to

early detection and therapy were financial problems,

ICSDH 2022 - The International Conference on Social Determinants of Health

transportation needs, inflexible work schedules and

limited family support (Braddock & Twyman, 2015).

Education services are one of the professional

services that have been accessed by parents. Parental

involvement is absolutely necessary in the

development of children with autism, but parents

have limitations, therefore the role of schools and

social workers is needed to help deal with situational

pressures during the child's education period

(Mujahiddin, 2012). Inclusive schools are

educational services for children with special needs

regardless of physical condition, intelligence, social,

emotional and other conditions. Inclusive schools are

effective in helping children with autism avoid

discriminatory attitudes, creating community

acceptance and getting the same treatment as normal

children, open attitudes from peers and school

teachers, so that children with special needs are able

to develop their potential. Research shows that

inclusive schools have an important role in the

development of children with autism in social

interactions (Pratiwi, 2015). Family participation is

needed, to follow every teaching procedure with high

integrity and commitment (de Oliveira et al., 2019).

The existence of inclusive schools needs to be

socialized to families and the general public, thereby

increasing understanding and support for autistic

children and their parents (Sari et al., 2021).

Therefore, access to information related to inclusive

education is absolutely necessary (Agustin, 2016).

Other studies had found that setting in inclusive

classrooms was able to make treatment to increase

positive social interactions and development in

children (Aller, 2017).

However, the facts on the ground showed that

there were obstacles in the field of children with

special need’s education, namely the lack of parental

access to inclusive schools, both access to

information and the limited availability of inclusive

schools. Data from the Directorate General of Special

Education of the Ministry of National Education in

March 2010, the number of children with special

needs in Indonesia was 324,000 people, while only

75,000 children attended school. Based on the

Regulation of the Minister of National Education

Number 70 of 2009 concerning Inclusive Education

for Students with Disabilities and Potential

Intelligence and/or Special Talents, in practice

inclusive schools were still constrained by the lack of

regular schools that organize this program and the

limited number of shadow teachers for children with

special needs in inclusive schools (Minister for

Women's Empowerment & Child Protection of the

Republic of Indonesia, 2011). Research showed that

the obstacles for persons with disabilities in the field

of education were the unavailability of curriculum

(teaching materials) that are appropriate to the needs

of students, the absence of educators who had the

ability to communicate, an environment that was not

ready for the implementation of inclusive education,

the absence of adequate and supportive facilities and

infrastructure and the absence of budget (Jayanti &

Marlina, 2018).

The results of the study found that parents also

access traditional medicine for the treatment of ASD

children, this condition needs further research on the

effectiveness of traditional therapy. A study using an

electronic database of Randomized Controlled Trial

(RCT), which assessed the efficacy of herbal

medicines alone or in combination with other

Traditional Chinese medicine, involving 567 patients

with ASD, showed that herbal medicines significantly

increased the Childhood Autism Rating Scale (

CARS) score, but the outcome effect on the total

effective rate (TER) different between studies. In

conclusion, there was an encouraging but

inconclusive efficacy of herbal medicines for the

treatment of ASD due to the low methodological

quality, diversity of herbal medicines, and small

sample size of the studies examined (Bang et al.,

2017).

This study found that parental responsiveness was

still weak in early detection of ASD cases, indicated

by parents being late in realizing their child's

developmental abnormalities, lack of understanding

of the condition of children with autism and not

immediately or late seeking help to professional

services for assessment and initial assessment was

carried out after the child was > 3 years old. This was

in line with other studies that parents were often late

in realizing that their child had autism due to lack of

knowledge and information about autism

(Kurniawan, 2021; Suteja & Ruwanti Wulandari,

2013). Lack of knowledge and understanding of

parents caused many parents to be late to

professionals for assessment, diagnosis and therapy of

their children. Although the level of parental

knowledge about autism was low, many parents had

high motivation for their child's recovery (Asmika et

al., 2006). To overcome this, many studies related to

expert systems based on information system

technology, both computer-based and android-based,

were developed to help parents detect ASD early.

(Aldrin et al., 2017; Lesmana, 2017). One study

succeeded in developing a diagnostic method for ASD

children in primary care, thereby reducing waiting

time for diagnostic consultations from an average of

144.7 days to 49.9 days, having high levels of family

Responsiveness of Parents in Early Detection and Access to Autism Spectrum Disorder (ASD) Services

and provider satisfaction and reducing referrals to

expensive tertiary diagnostic centers (Hine et al.,

2021).

The role of parents in early detection of children

with autism is very important, because it determines

the prognosis of therapy. Early intervention can be

done immediately so that the negative impact can be

reduced as much as possible. The golden opportunity

to help people with autism is at the age of less than

two years, because the best time to stimulate the

child's brain. Parents are expected to be able to

carefully monitor children's development and make

early detection of children (Kusdiyati, 2000). The

results of the study indicated that parents were quite

involved in the treatment of their children, starting

from confirming the doctor's diagnosis, fostering

communication with doctors, looking for another

doctor if the doctor in question was considered less

cooperative, telling the truth when consulting about

their child's development, enriching knowledge, and

accompanying children when did therapy

(Rachmayanti & Zulkaida, 2007). Other studies had

shown that there was a significant relationship

between parental adjustment and their role in the

therapy of children with autism. The attention of

parents with autism’s children was very important,

because good parental acceptance and adjustment had

an impact on an active role in various efforts to deal

with autism to support the success of therapy.

(Merianto & Risdayati, 2016).

Parental involvement in handling children with

autism includes seeking information about the child's

diagnosis, seeking appropriate treatment, explaining

how the child's condition is to the environment, not

distinguishing the parenting given to children,

between children with autism and normal siblings,

knowing each development’s children, giving

children the opportunity to be independent and able

to form inner bonds with children (Sudarmintawan &

Suarya, 2018).

5 CONCLUSION

Based on data on visits by children with ASD at

Laboratory for children with Special Need Surabaya,

it showed that parents responsiveness in monitoring

children's growth and development was still lacking,

which was shown by most of the parents who did not

have documented records of children's growth and

development. Parental responsiveness was still weak

in early detection of ASD cases, indicating that

parents were slow in realizing their child's

developmental abnormalities and did not immediately

seek help from professional services for assessment,

which was indicated by data access to initial

assessment carried out after the child was more than

three years old. However, most parents have tried to

access professional children with special need’s

services for diagnosis and therapy of their children.

6 SUGGESTION

Based on the results of the study, efforts to increase

parental responsiveness regarding monitoring

children's growth and development, early detection of

ASD and assistance during the process of handling

learning or therapy, are very important to do. One of

them is by increasing the understanding and skills of

parents regarding this matter. Therefore, it is

necessary to socialize and train parents related to

monitoring children's growth and development,

stimulation, early detection and intervention of

children with autism as well as skills in home learning

assistance and skills to synergize with the medical

team as well as teachers and therapists who handle

ASD children. Socialization and training for parents

can be carried out by various parties, ranging from

elements of the government, private sector and non-

governmental organizations.

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