For children with autism and their families, creating and maintaining a support network can be invaluable.

There are many professionals, groups and organisations who provide different levels of support services to the families of people with autism. The services you are able to access may depend on factors like age and location, in addition to your specific needs, but most people in Australia will be able to engage with a range of individuals and groups who have experience in providing therapies and other forms of support.

However, just as important as the professionals with whom you will likely come in contact is the support network provided by your own family and friends. These will generally be people who are constants in your lives, and so their support is likely to become the cornerstone of your network going forward.

Talking about autism to friends and family

One of the first steps in building a support network could be helping family and friends to understand what autism is, and what your child’s diagnosis means. This can be especially important in the period just after receiving a diagnosis, as it may be that autism is not something with which family members are familiar or have any experience.

Therefore, talking about autism can be the first step towards helping family and friends to understand how it might impact on your child’s behaviours, functional skills and relationships in the future.

This is because as a parent or carer of a child with autism, you will likely have benefitted from having your diagnosis explained by an experienced professional. As a consequence, you have probably gained a greater understanding of autism in general and, more particularly, how it may impact on your child. This means you now have the potential to be an invaluable source of information for friends and family about autism as well.

However, at the same time, it might be helpful to acknowledge that other family members may not be as informed as you, or have some preconceptions about people with autism, that mean they are not initially as supportive or helpful as you might like. A diagnosis may be difficult for some in the family to come to terms with, and may lead to them becoming withdrawn or hesitant to engage with your child, for instance. It will probably be helpful in the long term if you are able to acknowledge this, and respect that some members of the family may take longer to fully understand what a diagnosis of autism actually means.

At the same time, you should nevertheless talk to family and friends about the sort of comments and reactions that you find helpful and those that aren’t. This can be especially useful when it comes to the language they use when discussing autism, for instance, or their expectations of you and your child.

Helpful ways to talk about autism to family and friends

When talking to family and friends about autism, the way in which you frame the discussion can be important. Many parents and carers only begin to learn about autism once their child has a diagnosis, and so it is not unreasonable to expect that people without any experience of living with someone on the spectrum may not have an understanding of what it means.

It will usually be helpful when talking about autism with family and friends to explain that every person with autism has different strengths and skills, and that people on the spectrum will all have different needs as well. Being able to explain your child’s specific needs, and the reasons why, will therefore help other people in your child’s life be better able to meet them.

Following on from this, it may prove beneficial if you are able to describe in specific terms how autism may impact on your child’s behaviours and, as a result, the expectations that others should have of them.

Likewise, family and friends will probably appreciate some guidance on the best ways in which they can engage and communicate with your child — again, it can be helpful to reinforce the idea that all children with autism are unique and therefore the way in which they communicate and engage with the people around them will be unique as well.

Through helping the people around you to better understand autism and your child’s needs, you will be taking an important step towards creating an engaged network of people who can have a positive impact on all of your lives.

Don’t be afraid to ask for help

It can also be important for the parents and carers of children with autism to acknowledge that you sometimes require support too.

Simply expressing your needs or asking those around you for help may be the most simple, yet effective, way of establishing a family support network. It could be that family members whose knowledge or experience of autism is limited, or who haven’t fully understood what your child’s diagnosis means, don’t appreciate that you might want some additional help and support at times. Therefore, asking for help may be all that is required — after all, even those closest to you mightn’t know that you need their help unless you tell them.

Actively seeking assistance may also limit the potential for uncertainty and confusion on the part of family members as to how they can best help. They may feel more confident that they are impacting positively on your child’s life if they are explicitly being asked to play a role.

And of course, there are less tangible ways in which your extended family and friends can act as support network. Sometimes it might be beneficial if a friend or family member is simply there for you to talk to, or to give you encouragement. Parents and carers of children with autism can sometimes feel uncertain as to whether they are providing the right environment for their child, or that they are supporting them as effectively as they might. The reassurance of a family member or close friend in this respect can sometimes make all the difference.