A one-stop service to support parents of newly diagnosed autistic children (0 – 6 years old) in Singapore

1. Introduction
1.1 Health Problem to be addressed
Autism Spectrum Disorder (ASD) was defined by the American Psychiatric Association (1994) as a
developmental disorder. It covers the main three groups of Autism, Asperger’s Syndrome and Pervasive
Developmental Disorder. This disorder is characterized by social interaction impairment (for example: lack of
emotion reciprocity), communication impairment (e.g. total lack or delayed development of verbal skills) and
notably restricted and repetitive patterns of behaviours and activities1. Only started to be studied in details in the
1970s, ASD still remains as poorly understood. Children with autism are often presented with numerous
difficulties in communicating and learning. Because of that, many illnesses acquired by autistic children are
frequently overseen or missed: from normal developmental milestone in dental care too complex mental health.
It is known that high proportion of autistic children had at least one psychiatric disorder besides autism2. These
disorders are specific phobias, attention deficit hyperactivity (ADHD), separation anxiety, social phobias,
bipolar and depression. Depression in autistic children and adolescent has been known to associate with the
likelihood of self-inflict or even suicidal attempts (Sovner & Hurley 1982a, 1982b cited by Lainshart & Folstein
1994). In many countries, these autistic children grow up having with very limited life opportunities especially
in education and employment, which is the direct result of the social stigma of autism as a psychiatric condition.
Therefore, there have been efforts ongoing to advocate for this group of population3-5.
Moreover, several studies have associated taking care of autistic children parents’ depression, stress and
anxiety3, 6-8, especially during the early phrase after diagnosis. This difficult period has been known to affect the
parents’ mental health greatly with more severe impact on the mothers7. Furthermore, some parents of autistic
children described experiences of social rejection and subsequently social isolation. In some cases, family
break-down was noted when domestic violence and marriage failure occurred. The intense impact of autism
diagnosis and problems associated with the condition has been also expressed by siblings in the same family as
they were partly neglected9. Without an effective supportive network, the parents struggle to attain treatment
for their autistic child and at the same time, balance their work and carry out parenting tasks to other children10.

1.2 Target population

The Republic of Singapore is the smallest South East Asia island state off the southern tip of Malay Peninsula.
As of 2009, Singapore population stood at 4.8 million with 36% was foreigners. The state is well-known for its
efficiency and stability. Singapore government provides an extensive education and health care system that
boasting 84% health insurance coverage.
According to estimation from Autism Association (Singapore), the autism prevalence rate in Singapore is
24,000 individuals, of which 5,472 are children under the age of 19 years. Furthermore, an approximation of
216 new cases of children with autism is diagnosed annually. Due to the multiracial characteristic of Singapore,
most of the autistic cases detected in 2001 were of Chinese ethnic (85%), followed by 6% Malay, 5% Indian
and 4% Eurasian11.Most of the cases were diagnosed by psychologists or paediatricians. A large proportion of
the autistic children in Singapore are boys (81%), which is in agreement with the international report of 3-4
boys to one girl ratio11. Majority of the autistic children had very low or not at all verbal skill with 71% of them
spoke less than 5 words. In terms of the parents’ socioeconomic status, the number of cases increased with
higher income level of both working parents. Many of them reported frustration with dealing with their autistic
child.
Thus, the target population of this program are parents of newly diagnosed autistic children (0-6 years old)
1.3 Justification/Significance and Expected Outcome

Due to the lack of advocacy, there has been inadequate support and attention from government and community
to family and children with ASD. This is important as a number of studies mentioned the effectiveness of
family setting in helping autistic children’s development 4, 12-18. In a study by Bernard-Opitz (2001), verbal
skills of the autistic children in Singapore were severely underdeveloped as the indirectly result of the
multilingual context in Singapore in which a few languages can be used at home. In addition, 28% of the
autistic children were taken care of by foreign domestic workers who did not have language skills. The parents
have limited understanding of their children’s condition and so physical punishment was used frequently (69%
of child educating methods). Very few parents sought therapists to improve their child’s sensory-motor and
speech skills. Instead, some parents were known to turn to religious/spiritual healers for help. Most of
Singapore autistic children were often neglected in which they were fed and put in front of TV for 8 hours
straight without much learning stimulation from their parents11. In term of the parents themselves, many studies
showed high level of anxiety and depression while raising their autistic children 3, 5, 19-21. Furthermore, there has
been no public program actively seeks out and provides assistance for family with autistic child in Singapore.
Most of the existing programs are fragmented, limit at day childcare or one day training by private consultancy
services22. Moreover, the quality of these services has not been evaluated by any appointed government agency
up to date. Many parents voiced out concerns for a one-stop service program that could cover wider range of
support instead of the current patch-work services by different welfare volunteer organisations (WVOs) and
private consultancy companies23.
Recognizing an increasing trend of children with autism diagnosed every year in Singapore and their parents’
need, this program is expected to provide a multi-dimensional service including counselling and support the
parents of autistic children upon the child’ diagnosis. We aim to educate the parents of newly diagnosed autistic
children to understand autistic behaviours, be able to perform regularly home-centred method to stimulate their
autistic child’s learning ability within 2 years from the beginning of the program and we also provide other
parents’ supports.
2. Goal and Objectives of the program
2.1 Program goal
The long term goal is to decrease the number of highly dependent autistic individuals (above 19 years old) by
improving support to family with autistic children with early intervention so they will ultimately be able to
adapt and live with minimal support within community in Singapore.
2.2 Objectives
2.2.1 Objective 1
To strengthen understanding of at least 70% of parents of newly diagnosed autistic children (below the age of 6)
of autism in terms of common autistic behaviours, causes of autism, the child’s strength and the importance of
family interaction by end of 2012.
2.2.2 Objective 2
To empower and inform at least 70% of the parents newly diagnosed autistic children (below the age of 6)
about all the 30 support services available for autistic children and encourage social interactions and
involvement in self-help parents’ group by December 2012.
2.2.3 Objective 3
To equip at least 40% of the parents/caregivers with the suitable home training/ learning stimulation methods so
they can perform at least 2 methods at home regularly by December 2012.
2.2.4 Objective 4
To improve at least 30% of the parents’ mental health by reducing stress through counselling on their child’s
legal rights and financial support by end of 2012

3. Selection of strategies/intervention/methods

3.1 Program logic

Table 1: Program Logic
Outcomes
Inputs Activities Outputs Intermedia Long
Short
te
Seminars for Invitation Parents improve
parents about cards/calls sent to awareness of
autism: cause, the parents their child’s At least
common Parents’ doubt condition 40% of the
behaviours, and clarified by Singaporea
the importance of autism experts n parents of
family newly
interactions The long
diagnosed
term goal is
Organizing Sessions Parents of autistic
Personnel introducing conducted and autistic children to decrease
children
Program managers the number
sessions and trip trips completed aware well of educated to
Experts (psychiatrists, of highly
to the support facilities understand
developmental dependent
facilities available and their child
paediatricians) autistic
utilize them autistic
Therapists (speech individuals
Workshop of Workshop Parents are able condition,
therapists, (above 19
small group of conducted to plan suitable be able to
occupational years old)
parents to discuss regularly by routine and diet perform
therapists, nutritionists, by
effective daily facilitator/nutritio for their autistic regularly at
sensory-motor improving
routine and nist for actively child least 2
therapists. support to
appropriate involved parents home-
Training family with
dietary regime centred
moderators/facilitators autistic
Introduction Workshop held Parents gain methods to
Legal aid personnel children
workshop about regularly by a awareness of stimulate
Materials with early
home-based early facilitator available their
Printing and IT intervention
intervention learning autistic
equipments so they will
methods stimulating child’s
Audiovisual ultimately
methods to learning
equipments be able to
apply at home ability and
Seminar/small group adapt and
Workshop Workshop Trained parents they are
discussion rooms live with
training for small conducted by are able to aware of
Stationeries minimal
group of autism experts perform at least other
Transportation support
parents/caregiver and therapists 2 methods at parents’
Funding within
s on suitable home regularly supports
community
home-based within 2
in
intervention years from
Singapore
methods the
Counselling Session Increase beginning
sessions for conducted accessibility and of the
individual or regularly and awareness of program.
small group of upon request by parents to
parents regarding legal aid understanding
their child legal personnel of their child’s
 rights legal rights
Counselling Session Parents are able
sessions for conducted to manage their
parents on regularly and finance and
managing upon request know where to
financial and seek assistance
seeking financial if they need to
support for
raising children
with special
needs
Organize parents’ Roundtable talks Parents meet,
self-help group held with actively share their
roundtable to engaged parents. concern and
exchange ideas encourage one
another

3.2 Description of strategies

Up to date, there has been no substantial evidence for any cure for autism24. Many programs such as the
Holding Therapy, Daily Life Therapy/Higasi School, Option Approach, etc have claimed to effectively enable
the autistic children to live independently by putting them through vigorous school curriculum or creating
familiar environment. However, research is still required to evaluate the long term outcome and the
applicability of these programs16.Other therapies involving drug treatment, special dietary and intensive applied
behaviours analysis focus on the child have been known to be effective to certain extents, especially study trials
by Lovass (1987) and Koegel & Koegel (1995). Whilst the programs were effective, their high cost has been of
concerns to many autism experts and parents. In concordance with other studies, these programs however
emphasized the importance of early intervention with the parents playing a ‘changing agent’ role12, 18, 25-26.
Therefore, family-based and parent-focused intervention methods are the backbone in this program.
Strategy for objective 1: strengthen understanding of parents of newly diagnosed autistic children (below the
age of 6) of autism
Upon diagnosis of a child, each family reacts differently. More often, the parents have difficulty in diagnosis
resolution; are devastated and helpless. Many parents voiced up their needs of having detailed explanations by
experts in term of information provided specifically of their children’s behaviours and strategies to support the
treatment that child might need to undergo 27-29. Therefore, there should be engagement of the professional in
delivering the initial and subsequent assistance to the parents at early stage. This method was employed with
some success by The Help! Program constructed by the United Kingdom National Autistic Society16. Once the
parents gain better understanding of their autistic child’s behaviours, they could reduce physical punishment in
child up-bringing, which was very high among Singaporean parents (69%)11.
Strategy for objective 2: empower and inform parents about all the support services available for autistic
children and encourage social interactions and involvement in self-help parents’ group
Establishing a suitable intervention for a specific child is never easy for both professional and the decision
maker – the parents of the child. Without expert’s help, besides trying to understand the condition by sifting
through mountain of literature on results of different treatment trial, the parents need to identify available
outpatient psychotherapy and other therapies. This challenge could be overcome with an effective system of
delivering information from our program. This strategy enables and widens family’s choices of support and
assists them in navigating the service system that can be overwhelming at the time16, 30. Furthermore, the
involvement of parents into self-help group allows them to discuss freely and communicate about their concerns
of their children with certain common level of understanding31. Therefore, the program can provide some
flexibility and encourage the parents to be more socially active.
Strategy for objective 3: equip parents/caregivers with the suitable home training/ learning stimulation methods
so they can perform at least 2 methods at home regularly
Because most of autistic children were diagnosed early in Singapore (60% by the age of three years), it is still
possible to improve their delayed development progress. Home-centred early intervention methods have been
employed with positive outcomes in many well-known programs such as the Hanen Program (Canada), or
Oregon Statewide Regional Program Autism Training Sites (the US) and the EarlyBird (the UK, New Zealand).
Funded by Canadian government, The Hanen Program has been known to specialize in training parents to assist
children with learning disabilities such as Down’s syndrome and ASD. The program offers practical tools to
parents/caregivers so that daily activities could be learning stimulation for their autistic children and thus
enhance the children’s communication development 32. Similarly, the EarlyBird was designed to facilitate
parents’ understanding and good handling of their autistic children’s behaviours with methods suitable for daily
schedule12, 16, 31-32.
Strategy for objective 4: improve parents’ mental health by reducing stress through counselling on their child’s
legal rights and financial support
A number of studies have demonstrated that parents of autistic children are under tremendous stress rearing
children with special needs. Therefore, this strategy is to help the parents to manage other aspects of bringing up
a child with certain disabilities. Based on a similar notion, a program by Monash University called Pre-
Schoolers with Autism was developed to focus on the parents and has shown significantly positive outcome5.
Another model with the “whole-life” approach is TEACH (Treatment and Education of Autistic and Related
Communication Handicapped Children) by University of North Carolina. The program caters to young children
and their family up to their adulthood and has been shown to have great impact on the autistic individuals and
their family16. Therefore, providing legal information and counselling will be a part of this program’s strategy.

4. Log frame

Table 2: Log Frame

Performance Indicators Mean of verification Assumptions
Goal:  Lower percentage of  Data from the Institute of  Continuous support
To decrease the institutionalized autistic Mental Health and funding from the
number of highly individuals  Data from ENABLE fund government
dependent autistic  Higher number of report  Reduced sigma from
individuals (above 19 employed autistic people  Data from MYCS employer encourage
years old) by  Increase in number of  Data from VWOs more autistic adults
improving support to autistic students in higher in workforce
family with autistic education participation
children with early institutions/vocational
intervention so they training schools
will ultimately be able
to adapt and live with
minimal support
within community in
Singapore.

Purpose:
Effective training and At least 50% of the parents of  Questionnaires in  The children are able
counselling of parents the autistic children can different languages to learn skills (verbal
of newly diagnosed understand the developmental  Videotapes of home- or motor
autistic children in disorder well and can apply at coordination)
Singapore so they can least 1 teaching method in teaching sessions  The parents engage
be self-reliant in educating and managing their in the program
managing and autistic child regularly and are
assisting their autistic able to perform
child acquired learning
stimulating method
in long term at home
Objectives:
1. To strengthen  Score on questionnaire Number of questionnaires The parents are willing
understanding of at  Percentage of parents completed to do questionnaire and
least 70% of parents of understand their child’s participate in training
newly diagnosed autism behaviour pattern sessions
autistic children and can identify their
(below the age of 6) of child’s strength
autism in terms of
common autistic
behaviours, causes of
autism, the child’s
strength and the
importance of family
interaction by end of
2012.

2. To empower and  The usage of support  Record of usage from Parents actively utilize
inform at least 70% of facilities (frequency and the support service the support facilities
the parents about all duration) facilities
the 30 support services  Score on questionnaires  Feedback on the service
available for autistic availability from the
children and parents
encourage social
interactions and
involvement in self-
help parents’ group by
December 2012
3. To equip at least  Specialist’s evaluation on  Experts/Specialist’s  Specialists are
40% of the parents’ understanding review report available
parents/caregivers and performance during  Verified checklist of  The parents are
with the suitable home interaction with the teaching methods corporative
training/ learning parents conducted
stimulation methods so  The number of methods
they can perform at introduced
least 2 methods at  The parents can perform 2
home regularly by or more different methods
December 2012
4. To improve at least  Scores on stress arousal  Record of checklist  The parents are
30% of the parents’ checklist*  Form documented by willing to do survey
mental health by  Score on the parenting counsellor  Family well-being for
reducing stress stress at the beginning and 5 years
through counselling on end of program to
their child’s legal evaluate improvement of
rights and financial the parents’ mental
support by end of 2012 wellbeing Index form 6ǂ
Outputs:
1. The parents’
understanding of their
circumstances:
1.1 90% of the The parents’ resolution based Pre- and post- counselling There is a high
parents’ are able to on assessment by interviewer questionnaires filed in percentage of parents’
understand the causes Number of the parents answer progress report for each case participation and they
of autism and stop correctly on autism fact quiz have limited knowledge
blaming themselves on the nature of the
disorder
1.2 80% of the parents  Number of the parents Checklist filed with other The parents might have
are able to identify answer correctly on quiz results to be reviewed observed their child
common behaviours in autism fact quiz mid-term and end-term without knowing how to
autistic children in  Scores on the behaviour differentiate between
general and their child repertoire checklist normal and autistic
in particular  Behaviour diary behaviours
1.3 80% of the parents  Family Relation Scale¥  Filed assessment The parents often
are able to understand  Counsellor’s assessment  Counsellor’s report overlook their family’s
family members’ on the parents interactions and the
interactions  The parents are able to impact of those to all
outline daily routine the children
2.1 Community  The number of services  Data from the service If the parents know
Support awareness available and their provided recorded pre and more about the
All available support locations island-wide post induction facilities, they will
facilities will be  The usage of these actively utilize those
introduced to 100% of facilities and inform other
the participated parents
parents
3.1 Training the  The number of coaching  Record of coaching The parents are willing
parents the home- sessions sessions to learn and able to
teaching techniques so  Performance of the  Parents’ performance perform and practice at
that 60% of the parents parents to be graded by grading form filed home
are able to perform at unbiased evaluator
least two introduced
methods
4.1 50% of the parents  Score on Stress Arousal  Documented score at the The parents will fill in
feel less stress when Checklist beginning, mid and end of the form honestly
able to cope after 1  Parents’ feedback on the the program without embarrassment
year and 2 years of program or under pressure by the
training program coordinator
Activities: Inputs:
1.1.1 Collecting Manpower, stationary, Through data from the Permitted access to the
updated prevalence computer for database, Institute of Mental Health, database of IMH and
and demographic data transportation 2 Child Development CDUs
of autistic children in Units and the VWOs Parents are aware of
Singapore regularly their child’s disorder
once every 4 months before the child is 6
years old
1.1.2
Sending invitations or Manpower, transportation, Number of invitations sent Parents are willing to
calling in to the stationary, computer out, emailed / calls made respond and enrol in the
parents of newly program
diagnosed autistic
children to ask for
program enrolment
once every 4 months
1.1.3
Organize seminars  Autism experts such as  Meeting minutes or report  Availability of
about the causes of psychologist,  Training attendance form presenter and
autism one every 4 developmental budget/funding
months paediatrician, therapist  Parents are willing
 Venue, audio equipment to participate in
 Leaflets, booklets seminar
 Manpower  Availability of
 Refreshment seminar venue

1.1.4
Counselling the Counsellor, venue, stationary Counsellor’s report  The parents
parents in private if proactively seek help
they are still in doubt  Counsellors are
or they have not available
resolved on monthly
basis or upon request
1.2.1
Small group of 5-10 Reading materials on  Moderator’s note  Parents are willing
parents discussion on recognition of autistic  Number of participant to participate in
autistic behaviours & behaviours and check list recorded sheet discussion
their child’s Moderator, venue,  Number of discussion  The availability of
behaviours monitored stationary sessions counsellors
by professional per
month
1.3.1
Small group of 5-10 Moderator, venue, stationary  Moderator’s report  Parents are willing
parents discussion on  Number if participant to participate in
their family recorded sheet discussion
interactions monthly  The parents’ feedbacks  The availability of
counsellors
1.3.2
Small group of 5-10  Autism counsellor  Daily routine charted  Parents are willing
parents discussion on  Nutritionist  Recommended diet to participate in
recommended daily  Stationary, venue completed discussion
routines and diet  Stationary, venue  The availability of
regime – once every 2  Number of participant counsellors
months recorded sheet
2.1.1
Write contract and  Manpower  Contract write-up The committee in-
contact supporting  Stationary, library access completed charge of
services by the WVOs  Appointment with the supporting facilities
and 2 Child supporting facilities agree to meet
Development Units confirmed
(CDUs) in KK
Women’s and
Children’s Hospital
and National
University Hospital
2.1.2
Presentation and sign  Manpower Contract signed Other supporting
contract of partnership  Stationary facilities agree to
with the supporting  Transportation partnership
services by the WVOs
and 2 Child
Development Units
(CDUs)

2.1.3
Briefing about the  Venue, presenters from  Record of participation Parents are willing
availability of respective organization  Number of seminars held to participate in
supporting service  Stationary discussion
facility to parents once
every 2 months
2.1.4
Visiting trips to these  Facilitators  Transportation record of Long term
facilities once a month  Transportation the support facilities’ partnership with the
on Saturday morning visit facility operators
 Facilities’ guest log book established

3.1.1
Preparation of  Manpower 400 booklets and 400 The number of
orientation program  Stationary parents’ manual printed newly diagnosed
booklet and parents’ cases is about 200+
manual to intervention per annum
methods
3.1.2
Preliminary  Facilitators  Number of orientation  Parents are willing
orientation program to  Venue, stationary programs held to participate in
introduce to available  Booklets  Record of participation discussion
home-oriented  Completed attendance  The availability of
intervention methods forms facilitators
and expected roles of  Reports from facilitators
the parents once every
2 months
3.1.3
Comprehensive  Instructors (psychiatrists,  Record of participation  Parents are willing
instruction of selected psychomotor therapist,  Completed feedback to participate in
method for small speech therapist) forms discussion
group of parents (3-6  Venue, stationary  Reports from instructors  The availability of
participants) in  Teaching equipment: audio instructors
language, mortor & system for demonstration  The parents are able
cognitive  Parent’s manual of the to understand the
developmental tools to methods ǂǂ methods
conduct home-based
learning stimulation
once every 2 months
3.1.3
Assessment of parents’  Grading of the parents’  Evaluation report of The parents are
demonstration of performance by instructors observers on the willing to be
selected method when (psychiatrists, psychomotor performance of the observed/taped when
the parents are ready therapist, speech therapist) parents participation applying learning
or other participating  Videotapes of assessment stimulation method
parents sessions into interaction with
 Venue, stationary their autistic child
 Camcorder

4.1.1
Counselling the  Venue, stationary Counsellors’ report Counsellors are
parents on financial  Counsellors available
concerns associated
with raising an autistic
child once every 2
months or based on
request
4.1.2
Counselling the  Venue, stationary Counsellors’ report Counsellors are
parents of legal rights,  Counsellors available
especially education,
medical support and
future employment
opportunities once
every 2 months or
based on request
4.1.3
Organize regular self-  Venue, stationary Facilitators’ report Facilitators are
help parents  Facilitators available
roundtable discussion
once every 4 months
*: Diggle et al 2009
ǂ
: Lloy & Abidin 1985
¥
: (Höök 1992)
ǂǂ
: Including management of problematic behaviours such as tantrum, non-compliant, bedtime problems; and
anxiety or phobias.

5. An implementation plan with the implement schedule

Table 3: Gannt chart

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