Family, friends and your child’s autism spectrum disorder

Building a supportive network

Your extended family and friends are key elements in your informal support network. The best way to build this network is to help family and friends learn about your child’s ASD. This is especially important in the early days after diagnosis. Just like you, people in your support network need to understand what ASD means.

You can:

• acknowledge the feelings of family and friends – they too might be having trouble with the diagnosis
• give them basic information about ASD
• let them know how ASD impacts on your child and your child’s behaviour
• tell them how best to connect with your child. Talk to them about your child’s likes and dislikes and the best ways of communicating with your child.

Handling the responses of friends and relatives
People who make up your informal support are likely to respond in different ways to your child’s ASD diagnosis, behaviour or characteristics. Some might be quick to adapt to the diagnosis and ready to support you straight away. Others might need a bit longer to get used to it.

Unfortunately, some family and friends will have trouble offering support. Or they might respond in ways that aren’t very helpful. If you find yourself in this situation, there are a few things you can do:

• Make sure you’re ready with some basic information about your child’s ASD. Unhelpful reactions usually occur because people are not sure how to respond or they feel uncomfortable.
• Let your family and friends know which comments and reactions are helpful and supportive and which ones are not.
• Give it time. Generally, things will get better as people understand more about your situation.

Grandparents: a special relationship

When a child in the family is diagnosed with ASD, the effects on grandparents are likely to be similar to those on parents. Initially they might be shocked and sad. They might feel grief for the loss of a planned future for their grandchild. Grandparents might also grieve for your loss as a parent.

How grandparents can help
Children of all ages benefit from a close relationship with their grandparents. Like parents, grandparents can support a child’s development and can even negotiate with parents on a child’s behalf.

Grandparents of children with ASD can:

• provide social and emotional support – for example, by being available to listen and spend time with children
• provide care for their grandchild with ASD
• sometimes help financially
• help manage behaviour problems
• help with household tasks
• act as an advocate in the community, or be a source of information about their grandchild with ASD.

Grandparents’ concerns
Grandparents of children with ASD can have a range of concerns about their role and how they can help. For example, grandparents might be concerned about:

• their bond with their adult child and their grandchild with ASD, because they are caring for both
• the impact or demands of being a carer, which can be a big commitment
• their understanding of ASD, and their relationship with the professionals who are involved with their grandchild
• the future and what new crises might develop
• how to provide the best support and how involved to be – for example, whether they should wait to be asked for help, or just ‘jump in’
• why this has happened
• keeping the family together, and the different roles and responsibilities within the family.

If a grandparent is critical of how you’re managing your child with ASD, try not to react or worry too much. These tensions tend to result from strained relationships between grandparents and the child’s parents, rather than the grandchild’s ASD. Over time, parent–grandparent relationships generally improve, especially if you keep the communication lines open.

Video: Support from your extended family

‘Your extended family is a really important part of your support network’, says one of the dads in this video. To help them help you, he suggests giving them information so that they can better understand the needs of your child with autism spectrum disorder (ASD).

Other parents in this video also talk about the importance of support from extended family and relatives. They say that extended family support can reduce the strain on parents, and give a child with ASD child extra love and nurturing.

 

 

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