Living with autism spectrum disorder: building a support 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 autism spectrum disorder (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 – for example, it might help them to know that children with ASD are all different
  • let them know how ASD impacts on your child and your child’s behaviour – some children are affected more severely than others
  • 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 network will probably 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 happen because people aren’t 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 aren’t.
  • Give it time. Generally, things will get better as people understand more about your situation.
  • Focus more on your relationships with people who are supportive. This will allow you to get the emotional support you need, while giving other people in your life a bit more time to understand your situation.

To help extended family and friends help you, don’t be afraid to let people know what you need. This might range from cooking you a meal every now and then, taking you out for coffee, being prepared to babysit, or just being prepared to listen when you need someone to talk to.

Grandparents and children with autism spectrum disorder: a special relationship

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

How grandparents can help
Children of all ages benefit from  close relationships with their grandparents. Like parents, grandparents can support children’s development.

Grandparents of a child with ASD can:

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

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

  • maintaining their bond with their adult child and their grandchild with ASD, because grandparents are caring for both
  • handling the impact or demands of being carers, which can be a big commitment
  • understanding ASD, and managing their relationships with the professionals who are involved with their grandchild
  • handling new crises that might develop in the future
  • being involved in the family – for example, they might worry about whether to wait for you to ask for help, or just ‘jump in’
  • 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  children’s parents,  rather than the children’s ASD.

Over time, relationships between parents and grandparents generally improve, especially if you keep the lines of communication  open.