New Zealand Autism Spectrum Disorder Guideline - Ministry of Health

Part 2: Support for individuals, families and carers
All staff working with a child should liaise closely
to develop an individual plan and a family care
plan, which include clear goals and strategies and
which are updated regularly. Family care plans
should be written in a clear format and, where
necessary, intensive ASD service coordination
should be provided to assist in accessing services
provided by a joint funding provision 11 .
way to make information accessible. Literature
about provision of services to families and
whänau of children in rural areas is scarce.
There have been promising results for distance
education programmes for parents of children
with challenging behaviours (one based on
written materials with weekly telephone contact
and one delivered through television) 98 .
Part 2
Advocacy
It is important to make information available to
parents so they are able to take an active role in
advocacy for their children’s education if they
wish 96 .
Specialists and teachers can support parents
to master an understanding of the vocabulary
and systems of education, the characteristics
of ASD, how those are related to a child’s
educational needs and gain an appreciation of
how intervention techniques work. Without
this knowledge, it is unfair and unreasonable to
expect a parent to be an effective collaborator or
good advocate for his or her child 96 .
Education in advocacy skills should be available
for parents and individuals with ASD (see also
section 4.2 Problem minimisation and avoidance).
Conflict resolution skills may be useful for both
parents and school staff to ensure that both
groups are well informed and to ease tensions
that may arise through their interactions. There
is always the potential for conflict and both
parties need to be supported in learning how
to disagree and resolve differences within a
constructive atmosphere. Parents who do not
feel confident to advocate themselves should
be offered access to quality advocacy services 96
(Recommendation 2.1.7).
Rural issues
Rural families and whänau experience
significant challenges and disadvantages
in accessing resources and services (eg,
transportation, lack of local support, isolation,
financial resources, lack of employment
opportunities) compared with urban dwellers.
Distance education programmes may be one
Cultural issues
Cultural differences need to be recognised and
appropriately acknowledged. If teachers and
other professionals do not understand what the
child’s ASD means to a family, it will be difficult
for them to develop the kind of collaborative
relationship which is essential for the education
of children with ASD. Cultural sensitivity will
mean providing services in a language in which
parents are fluent as well as an understanding
that views of disability may differ for some
ethnic or racial groups 11 109 .
In New Zealand, it has been suggested that
people working with Mäori learners with special
education needs should not make assumptions
or unilateral decisions about what is culturally
appropriate for a learner and what degree of
cultural input is required. These decisions must
be made in consultation and collaboration with
the learners, parents and whänau concerned 112 .
A recent qualitative study which examined
Mäori perspectives of ASD identified that,
although parents’ experiences of diagnosis were
variable, many parents were well informed 108 .
Most had encountered both helpful services and
services with barriers. The report identified a
number of areas of concern that highlighted the
need for education in ASD. Parents had a wide
range of views with respect to cultural input
into service provision and saw Mäori-medium
education and services as having advantages
and disadvantages (inclusive supportive staff
versus a lack of knowledge about ASD).
A study that looked at access to ‘EarlyBird’, an
education programme for parents of children
before they start school, identified other cultural
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New Zealand Autism Spectrum Disorder Guideline