New Zealand Autism Spectrum Disorder Guideline - Ministry of Health

Part 2: Support for individuals, families and carers
2.2 Parent information and education
Summary of recommendations
Recommendations:
2.2.1 Family members need to know how to find and access information and support.
Health authorities and support groups must work together to develop
appropriate support services for adults and their partners to ensure sources of
support and information are available.
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2.2.2 All education services should be family-centred. B
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2.2.3 A key service to support families is the provision of information about ASD.
Information needs to be accessible to all people including translated material,
easy-to-read versions and developmentally appropriate information. Support
groups and government should work in close association to ensure all
information is kept up to date.
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The critical role parents play in supporting their children’s learning is highlighted by a meta-analysis
of health and aging undertaken for the Australian Government to identify the most effective models
of practice in early intervention for children with ASD. Emotional support, advice and education are
required by parents to enable them to work effectively with their children. Parents also need access
to up-to-date information about treatment options and support services. The research acknowledged
that information, support and education should be provided for the entire family unit. The Australian
report also commented on the needs of ethnic minorities, socioeconomically disadvantaged families
and people living in rural areas who require special consideration 129 .
A key service to support families is the provision of information about ASD. Increased media
attention and the widespread availability of the Internet have increased parents’ knowledge,
but these sources can convey perspectives that are not balanced or well-supported scientifically.
Parents need access to balanced information about ASD and the range of appropriate services and
technologies 96 (Recommendation 2.2.1). The information needs to be accessible to everyone and include
culturally appropriate material in an easy-to-read format that is developmentally appropriate.
Support groups and government should work in close association to ensure all information is kept up
to date 39 . Readiness for education in families and whänau with a newly diagnosed child needs to be
carefully handled and evaluated.
Information that can assist parents might include:
• scientifically based, specialised knowledge and skills about ASD and its treatment
• guidance on mastering specific teaching strategies that enable them to help their child acquire new
skills and behaviours
• information on understanding how ASD influences their child’s learning and behaviour
• guidance on understanding their rights and responsibilities in the education system in order to
effectively advocate for their child
• help in coping with the emotional stress that can follow from having a child with a significant
developmental disorder 98 .
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New Zealand Autism Spectrum Disorder Guideline