Parental accounts of the impact of
living with a child with autism in a
remote community.
Negara Brunei Darussalam.
A/Professor Kathleen Tait
Hong Kong Baptist University
Hong Kong SAR
Traditional Islamic Community
95% is uncultivated jungle
Strong cultural and religious
belief systems impact
on attitude and practice in
the remote areas of Brunei.
Water ways are a way of life.
Use of religious faith, medicine man, and
traditional medicine to “heal”.
Traditional (jungle)
medicine
“Kecubong” (flower)
The Inclusive Educational Policy
The philosophy and policy of
special education in Brunei state
that all children can learn if they
are provided with appropriate
educational programs that meet
the children’s unique individual
needs for maximizing their
learning potential.
However, students with mild
disabilities far over-represent
enrolment in regular classrooms
in comparison to students with
severe disabilities.
Parent initiated classes for students with special
education needs are held in private houses.
These non-registered classes are limited and occur in
very cramped conditions.
One NGO offering support for families
with chn with autism: Smarter Centre
• This NGO has been
running since 2004.
• It offers part time day
services to children
with autism aged
between 4 – 12 years
of age.
• There are no trained
therapists and no
trained teachers.
• There is a business
manager & Director.
Aim of the study
• The objective of this
study was to assess the
subjective
interpretation of
Bruneian parents’
regarding the impact of
a child with autism on
the family.
Participants
• 30 families with children with autism
aged between 0-12 years access
services from the only agency which
offers services to children with
autism in Brunei.
• All 30 sets of parents where
recruited to complete the Impact on
Family Scale (IFS; Stein &
Reissman, 2004).
• Parent perception of intensity of
stress in different life areas were
also examined as a function of
salient social and demographic
factors associated with the child’s
disability.
Data collection
• Data was collected in the
form of a home visit with
both parents where
possible.
• The semi-structured
interview was carried out
by an RA who was
Bruneian, training to be a
teacher, and who could
speak both English and
Malay fluently.
Results
• Bruneian parents reported a high degree of stress in caring for
their child with autism. Highlight some further discussion on
disruption of social relationships, general and total impact.
Disruption of Social Relationships
Disruption of Social Relationships
10
8
6
Frequency
4
2
Std. Dev = 3.87
Mean = 20.7
N = 30.00
0
12.5
15.0
17.5
20.0
22.5
25.0
27.5
He is okay …..as long as there is some
“blue”.
The “blue” family
General Impact
General Impact
10
8
6
Frequency
4
2
Std. Dev = 5.14
Mean = 25.8
N = 30.00
0
10.0 12.5 15.0 17.5 20.0 22.5 25.0 27.5 30.0 32.5
General impact
• Family 6
• Only parents that have
autism children know the
worry they are carrying
rather than parents doesn’t
have autism children.
• Financial problem is
affecting some parents to
send their children to
SMARTER for joining the
Association.
• There is a lot of parents had
an autism children in lack
‘of services’
Total Impact
Total Impact
14
12
10
8
6
Frequency
4
Std. Dev = 9.32
2
Mean = 49.6
N = 30.00
0
25.0 30.0 35.0 40.0 45.0 50.0 55.0 60.0 65.0
Themes that emerged
Positive outcomes
Closer family
More tolerant
Humble, caring,
Open minded
Never give up!
Stronger – emotionally,
physically, spiritually.
A test of the family
members’ faith.
Issues of concern
• Financial impact
• Lack of understanding
by others
• Lack of services in
regular schools
• Many concerned for
the future care of their
child – due to lack of
services.
Autism: a test of the families’ faith.
• Family 24
• A child is a responsibility given by Allah the Almighty.
Look after him/her well and God willing, you will be
blessed by this test. Amen.
• Family 12
• Autistic child is a “gift” child, as a parent.
• Family 16
• This test we can accurately say is from Allah the
Almighty to our family. This is for us to be more
patient when faced with other challenges.
• Family 27
• Life with a child with autism is very different and
challenging especially for your patience and faith.
Lack of support services impacts on
concerns for the future
Family 11
• Problems – if he doesn’t attend school and not preoccupied most of the time, he is
getting more hyperactive. With no other therapy treatment given aside from
SMARTER makes it more difficult for my son to adjust.
Family 19
• There is not much support from the Government and Society in Brunei on matters
related to Autism. The community as a whole does not understand what autism is, so
people tend to laugh or just find them troublesome or ‘weird’. Even my closest family
do not given enough support, none from the government, most govt schools teachers
are not trained to handle autistic children, so we need to send them to private schools,
and to ASD centre (SMARTER) and this cost extra money and time.
• I don’t know what will become of my son do when he is 18 years old. I’m not sure if
he will be accepted to work or not be taken advantage of. I pray and hope things will
be better and people will be kinder to him! (Insya Allah).
Family 27
• What we are worried and afraid about is the future of our child with autism. The ASD
centre requires sponsoring and donation from parents and other people. We are
hoping that our children with autism will receive an allowance from the government
so that they can be independent in the future if parents or guardians are no longer
alive.
Parents’ perceptions of barriers to
acceptance and inclusion
• Lack of support from other children’s parents, teachers, and
administrators.
• Superstitious beliefs (disability is an infectious disease).
• Reluctance of regular class teachers to accept students with
disabilities because of class size, no teaching skills and no time
for instructional planning.
• Lack of facilities and financial assistance in schools.
• Teachers negative attitudes and refusal to cooperate because
teaching students with disabilities is a burden.
• Negative community attitudes such as rejection and isolation of
peers with behavior problems.
Synergies with the World Report on Disability
• Chapter 5
• Social and demographic factors affecting
demand and supply – Impact of “shame”
• Consequences for caregivers of unmet need for
formal support services
• Stress/Greater difficulties as caregivers age
• Barriers to assistance and support.
• Lack of funding
• Inappropriate policies
• Inadequate & unresponsive services
What services need to be developed in Brunei?
1. The development of a culturally sensitive screening tool for the
early identification of young children with early signs or high
risk of developmental disabilities (such as autism).
2. The field development and field testing of pre-school early
intervention programmes that build on existing evidence of the
components of the successful programmes (SMARTER), but
which also reflect the cultural and social context of Brunei.
3. The development of a workforce and administrative structures
to enable the scaling up of inclusive education programmes.
4. Government assistance and financial support to the SMARTER
Centre – non-profit organizations who are filling the gap.
5. Community awareness and more support service organizations
to support a range of disabilities.
Conclusion:
• The evolution of educational opportunities for
people with disabilities is a civil and a human
rights issue.
• It is hoped that the results of this study will raise
awareness for the need of further social, health
and educational services for Bruneian families
who are currently trying to adjust their parenting
skills to cater for a family member with
autism……with very little support.
Thank-you!