The Economic Burden of Families with Autism Spectrum Disorders (ASD) Children in Malaysia

Abstract

The economic burden of families with Autism Spectrum Disorders (ASD) children that are far beyond the needs of typical children causes physical and mental stress for their parents. The study aims to examine the economic burden of parents with ASD children in Malaysia. Calculation is made using a cost-loss approach due to ASD that include direct, indirect and developmental costs. Using convenient sampling method, a total of 245 parents have filled out questionnaires through online or hard copies. Development costs represent the highest cost of RM20,989.33, followed by medical direct costs RM8,378.73, RM5,033.57 for non-medical direct costs and RM963.99 for indirect costs. The total cost of financing an ASD child is RM35,365.62 a year. This is a huge and burdensome amount for parents. The findings of this study may assist responsible parties in the planning of effective service provision to suit the need of parents with ASD children in Malaysia.

Full text

71
Journal of ICSAR
ISSN (print): 2548-8619; ISSN (online): 2548-8600
Volume 2 Number 1 January 2018
The Economic Burden of Families with Autism Spectrum Disorders (ASD) Children in
Malaysia
Sazlina Kamaralzamana, Hasnah Toranb, Suziyani Mohamedc , Nazmin Abdullahd
a Faculty of Health Sciences, National University of Malaysia, Jalan Raja Muda Aziz, 50300 Kuala Lumpur, Malaysia.
b,c,d Faculty of Education, National University of Malaysia, 43600 Bangi, Selangor, Malaysia.
Email: nazmin.a80@gmail.com
Abstract: The economic burden of families with Autism Spectrum Disorders (ASD) children that are
far beyond the needs of typical children causes physical and mental stress for their parents. The study
aims to examine the economic burden of parents with ASD children in Malaysia. Calculation is made
using a cost-loss approach due to ASD that include direct, indirect and developmental costs. Using
convenient sampling method, a total of 245 parents have lled out questionnaires through online or hard
copies. Development costs represent the highest cost of RM20,989.33, followed by medical direct costs
RM8,378.73, RM5,033.57 for non-medical direct costs and RM963.99 for indirect costs. The total cost of
nancing an ASD child is RM35,365.62 a year. This is a huge and burdensome amount for parents. The
ndings of this study may assist responsible parties in the planning of effective service provision to suit
the need of parents with ASD children in Malaysia.
Keywords: economic burden, autism spectrum disorders, parents, children.
Autism, or Autism Spectrum Disorder (ASD), refers
to a range of conditions characterized by challenges
with social skills, repetitive behaviours, speech and
nonverbal communication, as well as by unique
strengths and differences. Now we know that there
is not one ASD but many types, caused by different
combinations of genetic and environmental inuences
(Autism Speaks, 2012). The term “spectrum” reects
the wide variation in challenges and strengths possessed
by each person with ASD. Autism’s most-obvious signs
tend to appear between 2 and 3 years of age. In some
cases, it can be diagnosed as early as 18 months. Some
developmental delays associated with ASD can be
identied and addressed even earlier.
On March 27, 2014, the Centres for Disease
Control and Prevention (CDC) released new data on
the prevalence of autism in the United States. This
surveillance study identied 1 in 68 children (1 in 42
boys and 1 in 189 girls) as having autism spectrum
disorder (ASD). It is estimated than one out of every
600 children in Malaysia is born with autism. Recent
statistics show that some 47,000 of the people in this
country are autistic. Of the gure, it is estimated that
four out of every 10,000 suffer from severe autism
(Neik et al., 2015).
Early intervention such using multidisciplinary
educational and behavioural approaches (e.g., applied
behaviour analysis, skill oriented training therapies
for social and language development), prescribed
medication for specic symptoms, such as anxiety,
depression, attention decit disorder, customized
sessions (physical and speech), and hyperactivity,
obsessive compulsive behaviour (Mendoza, 2010).
Unfortunately, caregivers of ASD children face
numerous challenges and many studies reported
increased psychological distress including depression
(Sivberg, 2002; Weiss, 2002; Yirmiya, 2005).
Autism Speaks, the world’s leading autism
science and advocacy organization, today announced
preliminary results of new research that estimates
autism costs society a staggering $126 billion per year
(U.S.) – a number that has more than tripled since 2006.
(Autism Speaks, 2012). Based on the research by Drs.
Knapp and Mandell funded by Autism Speaks (2012),
a compiled information from recent studies of autism
costs from multiple sources to calculate the current cost
of autism associated with the current CDC-reported
prevalence that 1:110 children are diagnosed with an
autism spectrum disorder (ASD). The cost of autism
continues to grow with the rise in prevalence.
The research also found that non-medical costs
account for the greatest proportion of expenses. While
direct medical costs, such as outpatient care, home
care, and pharmacy, contribute signicantly to overall
expenses, non-medical costs, including intervention
services and special education, child day care, and
especially residential placements and care for adults
who age out of school and can no longer live at home
with parents account for the largest proportion of
autism costs.
Autism Speaks President Mark Roithmayr stated

72 Journal of ICSAR; Volume 2, Number 1, January 2018: 71-77
in his speech that, “The burden on families affected
by autism is enormous”. He also mentioned that, “The
extraordinary cost further exacerbates that burden. The
time and effort involved in coordinating the care and
treatment plan across a large number of providers has
reduced the ability of many families to earn a living.
Too many families are still denied insurance coverage
for essential treatments and services, and the economics
add to overall emotional burden on families” (Autism
Speaks, 2012).
METHOD
This study is a cross-sectional quantitative study of
observation type and convenient sampling techniques
used in respondent selection based on inclusive and
exclusive criteria. The inclusive criteria are; i) having
a child diagnosed with ASD; ii) families originating or
residing in Malaysia; iii) speak and write in Malay; and
iv) able to use internet or postal service. Whereas the
exclusive criteria are; i) family with more than one ASD
child or disabled family member; and ii) families with
more than one child or family members suffering from
chronic illness and requires long-term care. However,
these criteria are excluded as it will make the amount
of expenditure earned larger, while the purpose of the
study is to calculate the economic burden incurred by
each family to raise a child who has ASD only.
Information regarding family expenditure is
collected using Parents’ Financial Statements Form
that had been adapted from Out-of-pocket Expenses.
This form is divided into 5 parts which are; Part I
Parents’ Demographic Information; Part II ASD Child
Demographic Information; Part III and IV Expenditure
List; and Part V Parents and ASD Child Productivity
Loss.
Items in Part III and IV consist of expenditure
list for direct cost and developmental cost. Direct cost
consists of all expenditure related to medical treatment
of illness (Mahadeva, 2012). There are two categories
of direct costs which are medical direct cost and non-
medical direct cost. Medical direct cost is expenditure
for medical treatment sources that used to treat or
overcome condition complication of an individual such
as outpatient services, warded fees, diagnoses, medical
treatment, surgery, medication and rehabilitation
services. Whilst, non-medical direct cost includes
transportation and accommodation cost related to the
usage of medical services facilities (Rice, 1966).
Developmental cost is referred to expenditure for
special needs education, special diet, supplementary
diet and autism child care services (Wang, 2008).
Meanwhile, item in Part IV is about indirect cost
consisting of parents’ productivity loss cost and ASD
child productivity loss cost (Sullivan et al., 2008;
Chakravarti, 2008; Honeycutt et al., 2004; Salmon &
Reddihough, 2003). A pilot survey has been carried
out to identify the compatibility of Parents Financial
Statement Form and improvements have been done
based on the pilot survey. Afterwards, the form is
distributed online through email and private message
on social media which is Facebook. Data obtained is
analysed using average comparison and non-parametric
Kruskal-Wallis and Mann Whitney U test.
FINDINGS AND DISCUSSION
A total of 365 parents with ASD children have
completed the Parent Financial Statement Form online
but only 245 respondents are considered based on the
exclusive criteria. Based on the analysis carried out, the
min of ASD child age in this study is 8.65 years old.
For gender factor, 79.2% of research subject are male
children and 20.8% are female children. Descriptive
statistical analysis for racial factor shows that Malay is
the majority with 57.1%, followed by Chinese 25.3%,
others by 13.5% and Indian by 4.1%. Apart from that,
29.9% of ASD child with comorbid illness and 70.1%
are without comorbid illness.
The average family household income of families
with ASD children is RM6,141.00/month for year 2014.
Comparison of ASD family household income with
average state household income (Report on Household
Income and Basic Household Malaysia 2016) shows
that 69.8% of families with ASD child have household
income exceeding average of state household income.
Around 76.7% ASD child in this study received free
treatment from government health clinics and hospitals.
36.7% of research participants receiving monetary
assistance from Social Welfare Department (JKM),
zakat or from Ministry of Education Malaysia (KPM)
for ASD child schooling in the year 2014. Previous
study showed that there was no relationship between
household income and quality of life among disability
teenagers (Shamsul et al., 2013).
Average Family Economic Burden Category Cost
Based on Table 1, average cost incurred by families
with ASD children in 2014 is RM36,728.43. Overall,
developmental cost burden is the highest burden
even though Malaysians receive medical services at
government hospitals and health clinics. On average,
families with ASD children spend RM21,928.58 for
developmental costs, RM9,029.01 for medical direct
costs and RM5,770.84 for non-medical direct cost.
Comparison of components in the family economic
burden shows the average cost of developmental
needs is the highest despite the Government providing
free education in schools and care in Community
Rehabilitation Centre (PDK).

73
Sazlina K, Hasnah T, Suziyani M, Nazmin A, The Economic Burden of Families with Autism Spectrum. . . .
Table 1. Parents’ economic burden
Minimum Maximum Min Standard
Deviation
Direct Medical Cost (RM)
Purchase of
Medical Aid
Diagnostic Test
Surgery Ward
Entrance Fee
Alternative
Treatment
Medicine Cost
Medical and
Therapy Fee
Total
0.00*
0.00*
0.00*
0.00*
0.00*
0.00*
0.00*
15,000.00
6,000.00
30,000.00
48,000.00
60,000.00
18,000.00
177,000.00
587.69
317.47
1,021.25
695.75
816.49
4,940.08
8,378.73
1,285.00
693.09
3,129.45
3,473.67
4,107.92
3,461.85
16,150.98
Direct Non-Medical Cost (RM)
Transportation
Cost
- 60,000.00 5,033.57 6,579.35
Total - 60,000.00 5,033.57 6,579.35
Developmental Cost (RM)
Domestic
Helper
- 60,000.00 3,212.57 7,340.95
Nursery - 48,000.00 3,602.69 5,874.86
Special
Education
- 38,400.00 4,427.26 6,496.89
Special Dietary - 18,000.00 4,940.08 3,461.84
Daily
Necessities
- 60,000.00 2,029.71 4,130.56
Insurance - 25,000.00 1,262.08 2,237.18
Others - 60,000.00 1,514.94 4,740.52
Total - 309,400.00 20,989.33 34,282.80
Indirect Cost (RM)
Parents
Productivity
Loss
Autism Child
Productivity
Loss
- 4,153.50
9,695.10
142.78
821.21
467.37
2,853.10
Total - 1,3848.60 963.99 3,320.47
OVERALL TOTAL 560,248.60 35,365.62 60,333.52
Comparison of Economic Burden According to Age
Group
Based on Table 2, the family economic burden of
children with ASD in the age group 13-18 years was
highest at RM11009.17, followed by age group 0-3
years old RM8,800.00, then age group 7-12 years old
RM8,497.22 and age group 4-6 years RM7,845.25.
Kruskal-Wallis test carried out found that there are no
signicant differences between economic burdens with
autism child age groups.
Developmental costs are highest for age group
0-3 years, followed by age group 4-6 years and age
group 7-12 years. Studies have found that there are
no alternative treatment expenses for the age group
19 years and above. This indicates that parents have
stopped applying alternative treatment as they focus on
transition process as their children grow up.

74 Journal of ICSAR; Volume 2, Number 1, January 2018: 71-77
It was noted that youth and young adults with
ASD receive little transitional support as they age
towards adulthood. The transition from high school
to postsecondary education or employment can be
intensely challenging for both the individual with ASD
and their family (Nicholas, 2016).
The difference in ward entrance fee surgery
burden according to age group is also signicant (p =
0.024). This expenditure is the highest for autism child
in age group of 13- 18 years old, followed by 4-6 years
old age group, age group 19 and above and 0-3 years
old age group. Metabolism, gut, and immune function
abnormalities have also been frequently described
in ASD. Among children with ASD, gastrointestinal
symptoms have also been associated with more frequent
challenging behaviours (Chaidez, Hansen, & Hertz-
Picciotto, 2013). Defects in mitochondrial function,
redox sensitive metabolism, and carbon metabolism
have also been reported in smaller subsets of ASD
cases (Rossignol & Frye, 2012), though it remains to
Table 2. Comparison of ASD economic burden according to age group
Economic Burden
Categories/ Age
0-3 years old 4-6 years old 7-12 years
old
13-18 years
old
19 years and
above
Kruskal-
Wallis
(p) Test
Direct Medical Cost(RM)
Services
Rehabilitation
5,750.00 4,867.27 5,109.90 4,175.00 4,892.031 0.849
Alternative
Treatment
600.00 423.64 891.96 1450.00 0.00 0.361
Medicine Cost 1,150.00 471.52 1,183.92 930.00 184.62 0.781
Purchase of Medical
Aid
204.17 616.67 509.02 1,181.25 212.31 0.168
Diagnostic Test 295.83 337.88 325.05 322.92 115.38 0.510
Ward Entrance Fee
Surgery
800.00 1,128.28 477.37 2,950.00 907.69 0.024
Total 8,800.00 7,845.26 8,497.22 11,009.17 6,312.03 0.349
Developmental Cost (RM)
Domestic Helper 5,670.00 4,043.64 2,406.18 2,655.00 1,661.54 0.565
Nursery 6,730.00 4,730.30 2,568.25 2,615.00 1,670.77 0.070
Special Education 6,900.00 4,147.88 4,640.41 4,730.00 2,123.08 0.131
Special Dietary 5,750.00 4,867.27 5,109.90 4,175.00 4,892.31 0.849
Daily Necessities 2,700.00 1,820.00 2,180.92 1,873.00 2,169.23 0.655
Insurance 1,982.50 1,401.05 1,059.38 1,781.04 93.01 0.008
Others 1,360.00 956.36 1,995.46 2,525.00 461.54 0.014
Total 31,092.50 21,966.50 19,960.50 20,354.04 13,071.48 0.283
OVERALL
TOTAL
39,982.50 29,811.76 28,457.72 31,363.21 19,383.51 0.406
* Survey participants received free medical services from Malaysia’s hospital or health clinic or does not have the needs to receive
certain medical services.
be determined how these multisystem comorbidities
may aid understanding of pathophysiology or potential
etiologic subgroups.
Economic burden comparison for direct non-
medical cost found out that age group of 0-3 years
old record the highest amount, followed by age group
13 -18 years old, 19 years and above and 7-12 years.
Indirect cost is the highest for age group 13-19 years
old, followed by 7-12 years old and 4-6 years old.
Economic Comparison According to Household
Income Group
Based on Table 3, it is found that below average
household income bear higher expenditure compared
to above average household income which is
RM25,673.839. Below average household income
group recorded the highest total average cost for
services rehabilitation and medicine cost for direct
medical cost category.

75
Sazlina K, Hasnah T, Suziyani M, Nazmin A, The Economic Burden of Families with Autism Spectrum. . . .
Table 3. Comparison family with ASD child economic burden according to household income group
Economic Burden Category / Household
Income
Above Average Below Average Mann-Whitney U
(p) Test
Direct Medical Cost (RM)
Services Rehabilitation 5,678.11 4,620.70 0.005
Alternative Treatment 690.00 698.25 0.941
Medicine Cost 645.41 890.53 0.189
Purchase of Medical Aid 810.81 491.14 0.012
Diagnostic Test 404.05 280.00 0.117
Ward Entrance Fee Surgery 1,331.15 887.14 0.453
Total 9,559.53 7,867.76 0.317
Developmental Cost (RM)
Domestic Helper 5,242.70 2,334.04 0.008
Nursery 4,821.08 3,075.44 0.289
Special Education 7,253.51 3,204.68 0.001
Special Dietary 5,678.11 4,620.70 0.005
Daily Necessities 1,835.68 2,113.68 0.393
Insurance 2,031.51 929.11 0.000
Others 1,483.78 1,528.42 0.562
Total 28,346.37 17,806.07 0.317
OVERALL TOTAL (RM) 37,905.90 25,673.83 0.317
Analysis carried out found that there is signicant
difference between household income groups with
purchasing of medical aid (p = 0.012). Above average
household income group bears higher purchasing of
medical aid cost compared to lower household income
group because they can afford medical aid. Despites
having duty import exemption benets for replacement
aid and articial/support aide given to OKU card holder,
but family with ASD child still have to bear the cost of
replacement aids and delivery cost of replacement aid
from overseas (Department of Social Welfare, 2017).
Data also showed that there is signicant
difference between household income groups with
services rehabilitation (p = 0.005). Above average
household income groups again bears higher cost for
services rehabilitation compared to lower household
income group because they put in higher commitment
for their child’s therapy.
For developmental cost, results of the analysis
found out that there is signicant between household
income group with maid component (p = 0.008), special
education (p = 0.001), special diet (p = 0.005) and
insurance coverage (p = 0.000). This nding showed
that, the above average household income group chose
to hire maid to take care of ASD child while they
went out for work. This explanation is strengthened
when there is no family of above average household
income group spent on daily nursery. Apart from that,
family from above average household income also able
nancially to pay for a maid; two to three times more
than a daily nursery fees.
Economic Burden Comparison Between Comorbid
Group
Based on Table 4, group with comorbid illness
bear total expenditure of RM9,158.58, whereby the
amount is higher compared to group with no comorbid
illness. Comparison between economic burden
categories found that, there is no difference for the
cost of purchasing medical aid between the group
with comorbid and no comorbid illness (p = 0.459),
diagnostic test (p = 0.237) and ward entrance fee
surgery (p = 0.066), alternative treatment (p = 0.401)
and services rehabilitation (p = 0.154). However, for
medicine cost, group with comorbid illness bear higher
cost compared to group without comorbid illness (p =
0.004).
Comparison between comorbid groups for
developmental cost found group with comorbid illness
allocated higher expenditure for daily necessities (p =
0.001). Based on the study, ASD child with comorbid
illness required higher medical aid expenditure
compared to ASD child without comorbid illness
(Treating Autism Publications, 2014). This is because
ASD children have different medical aid according to
their level of development.

76 Journal of ICSAR; Volume 2, Number 1, January 2018: 71-77
Table 4. Comparison of ASD economic burden according to comorbid group
Economic Burden/
Comorbid Group
With Comorbid
Illness
Without Comorbid
Illness
Mann-Whitney U
(p) Test
Direct Medical Cost (RM)
Services Rehabilitation 5,390.70 4,756.21 0.154
Alternative Treatment 865.35 626.55 0.401
Medicine Cost 978.59 750.34 0.004
Purchase of Medical Aid 553.38 601.70 0.459
Diagnostic Test 336.76 309.60 0.237
Ward Entrance Fee Surgery 1,033.80 1,016.12 0.066
Total 9,158.58 8,060.52 0.233
Developmental Cost (RM)
Domestic Helper 4,438.31 2,712.41 0.250
Nursery 4,233.31 3,345.17 0.424
Special Education 4,097.75 4,561.72 0.974
Special Dietary 5,390.70 4,756.21 0.154
Daily Necessities 2,187.89 1,965.17 0.001
Insurance 1,476.07 1,174.76 0.808
Others 1,663.94 1,454.14 0.297
Total 23,487.97 19,969.58 0.624
OVERALL TOTAL (RM) 32,646.55 28,030.10 0.489
Lacks local medical aid and experienced
technician in handling medical aid should be taken into
consideration by the government to reduce the country
economic burden and as well for family with ASD
child.
Overall, the group without comorbid illness
incurred higher expenditure cost compared to those
with comorbid illness. This situation occurs as many
parents of the group with comorbid illness choose to
resign, have a lower average household income and
receive nancial aid from the government. Due to
issue of forced resignation, most parents suggesting,
that they are given the opportunity to work from home
or given more exible working hours. This suggests
that the decision to resign and caring for the child can
reduce the cost of a particular cost but the household
income needs to be sacriced.
CONCLUSION NAD SUGGESTION
Conclusion
The nancial burden experienced by family with
ASD children in Malaysia is still less comprehensible
and are not addressed properly. Even though the Social
Welfare Department had given subsidies to assist in
buying support aid, there are still other aspects of needs
yet to be handled. Information about ASD economic
burden will be able to assist policy makers in policy
planning based on solid evidence.
Suggestion
With the information about types of expenditure
needed for ASD child care, the burden carried by ASD
child parents is able to be explained and assistants can
be given to them. Hence, this study can be made into an
important reference to local policy makers, community
welfare body as well as related non-governmental
organisations to give assistance that are cost-effective
for ASD group. To reduce the heavy loads the parents
of students with disability, it is needed the real supports
from the local policy makers, community welfare body,
and non-govermental organization.
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