New Zealand Autism Spectrum Disorder Guideline - Ministry of Health

Part 2: Support for individuals, families and carers
Parent–professional collaboration
The evidence is clear that regardless of the
intervention, implementing it across home,
early childhood education services, school
and community settings is important to
the outcomes. However, the high level of
participation that is associated with effective
outcomes does put considerable demands
on parents 96 .
Parents have to take on multiple roles when
their child has ASD. Engagement of parents
is crucial, but the degree to which they are
involved will differ, depending on family wishes
and circumstances. Some parents just want to
be ‘Mum’ or ‘Dad’ and not the child’s teacher,
and this should be respected. When planning
interventions, parents and professionals need
to agree on the roles and responsibilities each
wishes to take. These roles may change at times
to reflect the specific needs of the child and his
or her family 11 108 109 .
Eco-cultural theories hold that family values
are embedded in daily routines and families
and whänau maintain these routines in order to
adapt to their environment. Research suggests
that interventions need to accommodate these
routines or they will not be sustainable 98 . It is
important that the skills which are targeted in
individual plans are functional and able to be
practised in both home and educational settings 96 .
Collaboration is associated with effective
outcomes. A collaborative intervention considers
that the child’s and family’s characteristics
(values, culture and resources) are important
in designing interventions and routines. A
review of parent roles in intervention reported
greater improvements for children following a
collaborative-consultation model than with a
teacher-only model 98 (Recommendation 2.1.4).
Family participation is effectively supported
by education providers through ongoing
consultation and individualised problem
solving, as well as through opportunities to
learn techniques for teaching their children.
While parents cannot be expected to provide
the majority of educational programming for
their child, their concerns and perspectives
should actively shape educational planning 96
(Recommendation 2.1.5).
Support for New Zealand families during
the diagnostic process is outlined in Part 1
of this guideline. Key actions recommended,
specifically for families following assessment
and diagnosis 11 , include:
• easy access for families to information and
support relating to their needs
• immediate appointment of a key worker
who has ASD expertise for coordination of
interventions and supports for the child and
family, with an outline of agreed time scales
and dates (this person is not the same as the
ASD coordinator who coordinates referral)
• care plan developed with and for the family
which includes care management for complex
situations and ongoing needs
• consideration of the needs of siblings as part
of the care plan.
There is increasing awareness about the practical
and emotional needs of family members and
the central role they can play in the family’s
adaptation to ASD. Virtually all parents of
children with special education needs require
support, partnership and substantial new
skills and knowledge learned in the context of
the needs of their particular child. Families’
knowledge, beliefs, aspirations, values, culture
and preference for services must be recognised
and used for planning and provision of supports
and services 11 110 (Recommendations 2.1.5, 2.1.6).
Observational research acknowledges the
important role that parents have in any
intervention process, but specific guidance
is lacking on the potential advantages and
disadvantages of different parent-mediated
approaches to providing early intervention.
A Cochrane systematic review, including two
small randomised controlled trials (RCTs), was
unable to offer guidance for practice from its
findings 111 .
Part 2
New Zealand Autism Spectrum Disorder Guideline 65