If you have a child with autism spectrum disorder (ASD), you can get community support from many different people and groups. And if you sometimes feel upset by people’s responses to your child, it might help to know that it usually does get easier.
Community support for autism spectrum disorder (ASD)
Support can come from anywhere in your community – neighbours, shopkeepers, schools, religious groups, your medical centre, the local footy club … the list goes on.
Community support groups
One good way to get community support for your child with autism spectrum disorder (ASD) is to join a local support group.
Most parents of children with ASD join a support group at some time. Parents say that they find it helpful to share experiences and make friends with others who have a child with ASD. Parents also say support groups are one of the main ways they handle stress.
You can find out more about support groups in your area by contacting your state autism association or a national support program such as MyTime.
It’s worth remembering that not all support is good support. Sometimes a source of support brings new challenges or pressures you didn’t expect.
If you find a new community support service isn’t making things easier for you or your child, or you’re having strong negative feelings about it, think about whether it’s worth it, or if there is another service you could attend.
You don’t have to join an ASD-specific support group. Other local parent groups or playgroups, for example, can be a good source of support. You could also check out our forum for parents of children with ASD
Formal support for ASD
Your formal support network is made up of the organisations and people who have specialist training to help you and your child. Examples might include:
Two-way communication with these professionals and services is very important. It’s also very important that they take you seriously as part of the team caring for your child. Read more about what to expect from professionals and developing partnerships with professionals.
Formal support: what parents say
Parents of children with ASD say that their top sources of formal support include schools, preschools and their staff, and respite care. Parents really value the feeling of being involved in their child’s treatment or therapy.
Parents also say that support that helps them to understand their child helps lower family stress. Positive relationships with professionals are good for stress levels too.
Gaps in professional service and support
Generally professionals and formal support services offer caring and knowledgeable support.
But parents sometimes find there are gaps in awareness and support. For example, parents say that they sometimes have to deal with rude or ignorant professionals. Sometimes professionals don’t give families enough support or they give wrong information.
If you find yourself in a situation like this, remember that you can stand up for yourself – perhaps by pointing out how you feel, asking for more information, or seeking support elsewhere.
Video Raising children with autism spectrum disorder: support
In this short video, parents talk about the support they found helpful when caring for their children with autism spectrum disorder (ASD). They say that it’s very important to take time for yourself when you can. Friends, family, support groups and respite services can give you the chance to do this.
People living in National Disability Insurance Scheme
trial areas can get help to access community support and service options. It’s worth checking out your options under the NDIS.
Community reactions to children with ASD
People don’t usually notice children with autism spectrum disorder (ASD) until they notice difficult ASD-related behaviour – for example, your child throwing a tantrum in a public place. People might stare or say insensitive or rude things when this happens, although they can be kind, helpful and thoughtful too.
You might feel worried or self-conscious in these situations, but it won’t always be this way. There are positive ways you can deal with the reactions of other people.
Other parents say that over time negative community reactions reduce, seem less important, and don’t worry them as much.
Because community education can help in changing negative reactions, some parents decide to become strong advocates for ASD awareness in their community.