Having a grandchild on the autism spectrum


We asked the grandparents to tell us about the support they had, or the support they would like. Most focused on their children and the support they received (or needed), rather than themselves. They felt their role was to provide support for their children and grandchildren (see ‘Being a grandparent’) and some seemed surprised when asked what support they, themselves, would like.
“You have things to deal with and you need support to do it”
The different forms of support grandparents described their grandchildren receiving included portage workers (Portage is a home-visiting educational service for pre-school children with special educational needs and disability and their families), speech and language therapy, incontinence support, Barnardos Early Years Projects, autism outreach support workers and various after school clubs. A few parents received Direct Payments so they could buy in support workers to provide them with a break. Some of the children also received financial support in the form of Disability Living Allowance, Motability and Disabled Facilities Grant (which enables people to adapt their homes in particular ways).
“Some people are skilled at support, others are a bit blunter”
Some grandparents said that support was either not available or wasn’t helpful to their children or grandchildren. Others worried that support would be cut because of the current economic climate. One grandparent, who cared for her grandson full time, was not able to claim carer’s allowance because she was beyond retirement age. This left her financially unable to do some of the activities with her grandson that she felt would benefit him.
While they could identify support that would be useful, the support provided sometimes made things worse or caused their children upset or anger. One grandparent felt she was seen as “uncooperative” when she turned down some support offered to her grandson, who she cared for full time. Another felt that the mass of advice coming from different people and agencies could get overwhelming and that the “ownership” of dealing with her grandson should be brought back to her daughter.
Support that people thought would be helpful to their children included targeted support for specific behaviours, professionals that had some understanding and awareness about autism, and support that was “definite, clear and straightforward”. A few grandparents said they would have liked to have known about support groups where they could have shared experiences with other grandparents.
“You feel I’m not the only grandma having to do grandma plus”
Some grandparents were involved with support groups and they found this very helpful. They could share experiences, learn different tips and feel reassured that they were not the only grandparents in this situation. As one grandparent who didn’t know of any support groups said, “There is a sense of being alone. You know, different, separated, isolated”.
“Support? Why would we?” 
A couple of grandparents said that they supported each other and didn’t want any external support. Others got their support from friends and felt that this was all they needed. Many also said that it was their duty to support their children in any way they could and not be at the receiving end of support; as one person said, “My job is to give support”.
Last reviewed August 2018.
Last updated August 2018.

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