New Zealand Autism Spectrum Disorder Guideline - Ministry of Health

Part 2: Support for individuals, families and carers
2.4 Coordination of services
Summary of recommendations
Recommendations:
2.4.1 A coordinated service should be provided to families and whänau and they
should be supported to access services across sectors.
Grade
C
2.4.2 Family support services should be flexible and timely. C
2.4.3 Families and service users should have direct involvement in planning and
implementation of service provision.
C
Good Practice Point:
2.4.4 A coordinated approach to planning and implementing services should be
developed to meet the identified needs of an individual with ASD, including
linkage or integration and coordination of multiple services. This requires further
discussion and analysis to support implementation of services.
Part 2
Support and service needs
The complex range of emotional and practical difficulties that parents and carers of children with
ASD experience tend to change over time 98 108 . These often unmet needs include:
• difficulties accessing diagnostic services
• anxiety and helplessness before diagnosis; sadness, anger and disappointment at diagnosis and,
for some parents, a sense of relief in finding out what is wrong with their child
• difficulties finding and accessing services (particularly culturally appropriate services)
• lack of knowledge among medical, educational, social and community service agencies
• dependency issues and concern about the child’s welfare in the years ahead
• intolerance, misunderstanding and lack of community acceptance of their child
• disruptions in family routines and lifestyle limitations, including reduced access to opportunities
for social interaction, recreation and leisure activities
• heavy caregiving responsibilities and ‘burn-out’ from working intensively on behalf of
their children
• unmet needs such as difficulty accessing respite care and advice about education and behaviour 178-181 .
New Zealand Autism Spectrum Disorder Guideline 81