Parental accounts of the impact of Parental accounts of the impact of living with a child with autism in a living with a child with autism in a

remote community.remote community.

Negara Brunei Darussalam. Negara Brunei Darussalam.

A/Professor Kathleen Tait

Hong Kong Baptist University

Hong Kong SAR

Traditional Islamic CommunityTraditional Islamic Community

95% is uncultivated jungle95% is uncultivated jungle

Strong cultural and Strong cultural and religious religious

belief systems impact belief systems impact on attitude and practice in on attitude and practice in the remote areas of Brunei.the remote areas of Brunei.

Water ways are a way of life.Water ways are a way of life.

Use of religious faith, medicine man, and Use of religious faith, medicine man, and traditional medicine to “heal”.traditional medicine to “heal”.

Traditional (jungle) Traditional (jungle) medicinemedicine

“Kecubong”“Kecubong” (flower) (flower)

The Inclusive Educational PolicyThe Inclusive Educational PolicyThe 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 classesParent initiated classes for students with special for students with special education needs are held in education needs are held in private houses. private houses.

These These non-registerednon-registered classes are limited and occur in classes are limited and occur in very cramped conditions.very cramped conditions.

One NGO offering support for families One NGO offering support for families with chn with autism: Smarter Centrewith 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 studyAim 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.

ParticipantsParticipants• 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 collectionData 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.

ResultsResults• 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 RelationshipsDisruption of Social Relationships

27.525.022.520.017.515.012.5

Disruption of Social Relationships

Fre

qu

en

cy

10

8

6

4

2

0

Std. Dev = 3.87

Mean = 20.7

N = 30.00

He is okay …..as long as there is some He is okay …..as long as there is some “blue”.“blue”.

The “blue” familyThe “blue” family

General ImpactGeneral Impact

32.530.027.525.022.520.017.515.012.510.0

General ImpactF

requ

ency

10

8

6

4

2

0

Std. Dev = 5.14

Mean = 25.8

N = 30.00

General impactGeneral 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 ImpactTotal Impact

65.060.055.050.045.040.035.030.025.0

Total Impact

Freq

uenc

y

14

12

10

8

6

4

2

0

Std. Dev = 9.32

Mean = 49.6

N = 30.00

Themes that emergedThemes that emergedPositive outcomesCloser familyMore tolerantHumble, caring,Open mindedNever 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.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 Lack of support services impacts on concerns for the futureconcerns 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 Parents’ perceptions of barriers to acceptance and inclusionacceptance 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 DisabilitySynergies 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?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: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!Thank-you!