New Zealand Autism Spectrum Disorder Guideline - Ministry of Health

Part 2: Support for individuals, families and carers
Part 2
2.1.a Parents and full-time carers
Emotional and financial stresses
There is significant agreement that having
a child with ASD places additional stresses
on parents (especially mothers), families and
whänau. There is speculation that the lack of
interpersonal responsiveness might be a major
reason for this, over and above the difficulty
of having a child with a significant disability 94 .
Factors associated with parent and family
psychological distress include low levels of
support from within the family and bringing
up a child with challenging behaviour 95 .
Parental perception can have an impact on
how well parents cope. Mothers who feel they
are to blame for their child’s disability or those
who find the child’s needs to be a catastrophe
for the family tend to have more difficulty
adapting. In contrast, perceived social support
(such as supportive partners) and psychological
hardiness (an understanding and acceptance of
the diagnosis) tend to protect mothers from the
effects of stress 96 .
Most of the literature describes parents’
experiences of helping a person with ASD
to develop skills and enjoy activities as hard
work and time consuming, and the additional
demands of caring for a family member with
ASD often continue into adulthood. Combining
this with bringing up other children poses
challenges in meeting the needs of the whole
family 23 39 . These challenges are more complex
if families have more than one family member
on the spectrum 97 . The behaviour of the person
with ASD will impact on other members of the
family and balancing the needs of other children
will require extra consideration. Despite these
demands, families and whänau are often
extremely resilient and develop excellent coping
strategies, including strengths-focused problem
solving 96 98 .
Longitudinal research on the experiences
of parents and families as they adapt to the
changing needs of a family member with ASD is
scarce. Research tends to concentrate on mothers
and has a focus on the negative aspects of ASD,
with limited research on cultural influences.
Little is known about the long-term experiences
of families who have children with Asperger
syndrome 99-101 .
Research shows the economic and social impact
of caring for family members with disabilities 23
102-104
. Combined with the cost of therapies and
medication, interventions and support services
and lost earnings, ASD is acknowledged to be a
costly disorder. Flexible community-based and
employer supports are crucial to support parents
of children with disabilities to enable them to
work and care for their children 102 .
Support and respite to minimise stress
Timely and more effective early support for
the management of children with ASD may
reduce the need for full-time 24-hour out-ofhome
placements of some young children with
ASD 11 . Providing support to families who care
for a child with ASD may result in a significant
cost-benefit to government, saving expensive
crisis management and providing quality of
life to people with ASD and their families 105
(Recommendations 2.1.1, 2.1.2). Evidence suggests
that the provision of respite care and a key
worker case management model is likely to lead
to the most positive outcomes for parents 103 105 107 .
The value of parent-led support networks has
also been identified 106 . Parents want help to
deal with the issues they are facing following
diagnosis. Parent-to-parent support enables
new parents to feel less isolated and encourages
access to information 107 (Recommendation 2.1.3).
The strongest evidence for reducing stress
in mothers identified the success of more
structured interventions, such as cognitive
behavioural interventions. There is a lack of
evidence for alternative models to cognitive
behaviour therapy, including culturally
appropriate elements and how and when to
involve other family members 106 .
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New Zealand Autism Spectrum Disorder Guideline