New Zealand Autism Spectrum Disorder Guideline - Ministry of Health

Part 2: Support for individuals, families and carers
Part 2
siblings, particularly, require close monitoring to
ensure that if they have indicators, intervention
can begin very early 96 .
2.1.c Grandparents
Even when generally supportive, extended
family and whänau such as grandparents can
struggle to provide practical and emotional
support because of difficulties coming to
terms with the diagnosis and the challenging
behaviours of children with ASD. Community
awareness and understanding of ASD are
important to overcoming these barriers 108 .
Three key themes were identified from a
qualitative study on the experiences of six
grandparents of children diagnosed with ASD:
the parental bond towards the grandchild and
adult child, striving for answers (the search
for meaning) and the role of grandparents in
holding the family together 122 . Their role in
helping to inform clinical assessment work is
unclear and there is a lack of evidence on the
therapeutic value and cost-effectiveness of
involving grandparents as part of the assessment
process (Good Practice Point 2.1.9).
New Zealand child-protection law requires
that children be placed within their extended
family, if possible, when in need of care and
in many cases it is grandparents who take on
the caring role. Many others take care of their
grandchildren in response to a family crisis
without any formal or statutory intervention 123 .
Anecdotally, it is known that some grandparents
who may have looked forward to retirement
after parenting their own ASD child(ren), find
themselves caring for their grandchildren who
have been diagnosed with an ASD. Whatever the
circumstances, information, support and services
are essential to help grandparents to cope. A
New Zealand handbook for grandparents and
other kin carers exists which is a comprehensive
resource – including further references and
contacts for agencies – for grandparents who
find themselves in this situation 123 .
2.1.d Formal carers
Formal carers are those people who are paid
to care for people who are placed outside their
family home. Education, opportunities to discuss
professional practices and having breaks are seen
as necessary supports for carers. There is a lack
of ASD-specific evidence in this area and further
research into their support needs is recommended.
2.1.e Spouses and life partners
People with ASD do have intimate relationships,
inclusive of marriage, life partnerships and
homosexual relationships, although it should be
noted that not all adults with ASD will want or
attain a long-term relationship. Although this is
an area that remains under-researched, personal
accounts by both partners and individuals with
ASD can be found in the literature 25 124 including
perspectives provided by counsellors 125 .
Challenges to these relationships include
difficulties that are directly related to ASD,
particularly in relation to communication,
socialising and imaginative thought. How a
partner approaches and copes with the many
difficulties that having ASD can present makes
a difference to the coping mechanisms of both
partners 125 . Appropriate support services are
needed for adults with ASD and their partners.
A review of literature, anecdotal information
and websites identifies a number of supports
that spouses and partners can access to support
them in their relationships, including how to:
• learn about ASD and how it affects their
loved one
• establish routines that work for both
partners – this can include negotiating formal
agreements about things that cause problems
• access genetic counselling, if planning to have
children
• access relationship assistance if needed – the
counsellor must know about ASD
• handle separation and divorce, which present
special issues.
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New Zealand Autism Spectrum Disorder Guideline