New Zealand Autism Spectrum Disorder Guideline - Ministry of Health

Part 2: Support for individuals, families and carers
Sound information from appropriately qualified
professionals can also assist parents to make
good decisions and maintain a sense of control.
Parents require timely information about
assessments, education plans and the available
resources for their children to be conveyed in a
meaningful way that gives them time to prepare
to fulfil their roles and responsibilities 96 .
In a qualitative study of 19 Mäori families and
whänau in New Zealand, parents reported
finding a range of information to be helpful:
verbal explanations of ASD at point of diagnosis;
a good talk with someone who knew about
ASD; how they could assist their child; future
implications; and what services, equipment and
entitlements existed. Parents wanted to know
not only how these could be obtained, but who
could assist them in the process. Useful sources
of information were identified: taped and
written information (ranging from pamphlets
and books), videos, conference attendance and
web-based information 108 .
In some situations, Pacific people may feel that
asking for help, which can extend to seeking
out services, is rude. In their communities,
help is usually offered rather than requested 130 .
Traditionally, family issues and problems
are kept very private and often hidden and
families can find it extremely difficult to actively
seek help and ask for available services and
supports, especially where there are gaps in
services. Information therefore needs to be
offered to people rather than expecting them to
initiate contact or ask for help. Socioeconomic
circumstances must also be considered (eg,
access to transport or a telephone) 131 . It has been
reported for other health conditions that it is
more effective to provide consumer information
proactively, for example, using a range of
media to provide consumer information and, in
the absence of any evidence to the contrary, it
should be assumed that the same is likely to be
true for ASD (Recommendation 2.2.3).
Conversely, teachers and other professionals
need to recognise the value of the information
held by parents and other family members. In
addition to specialist assessments, it is essential
that teachers and parents work together to
develop an awareness of the child’s specific
strengths and difficulties. Understanding and
interpreting this information is often the key to
successful interventions and professionals need
to find sensitive ways to gather this information
96 98
from parents and highlight its importance
(Recommendation 2.2.2).
As well as keeping parents and families well
informed, parent education has been identified
as one of the most widely accepted intervention
methods for children with ASD 132 . It has been
noted that assessment of factors likely to
influence the success and course of intervention
is in the early stages of development. An
understanding of the key factors influencing the
effectiveness of parents as teachers should help:
• aid choice of intervention and timing to
optimise success
• identify parents who would profit from
parent education
• identify barriers to accessing education and
possibly increase maintenance of gains.
Two survey studies, each of over 250
mothers whose children were receiving early
intervention, showed that the highest preference
for services was for parent education activities.
This preference rated higher than the preference
for other family support activities, including
personal/family assistance and resource
assistance 133 134 .
Parent education is generally associated with
improved family outcomes. Parent education
increases the number of intervention hours that
a child receives and has been shown to help
children to generalise and maintain what they
have learned, which reduces stress for parents 98 .
In addition, the use of effective teaching
methods for children with ASD results in more
adaptive skills for the child, giving family and
whänau members access to a wider range of
leisure options and more time for one another 96 .
Part 2
New Zealand Autism Spectrum Disorder Guideline 71