Support for autism spectrum disorder in your community

Community support

Support can come from anywhere in your community: neighbours, shopkeepers, schools, religious groups, your medical centre, the local footy club … the list goes on.

Support groups
One good way to get support is to join a local support group:

• In a recent survey, more than two-thirds of parents of children with ASD said they have joined a support group at some time.
• Parents have said that they find it helpful to share experiences and make friends with others who have a child with ASD.
• Parents also ranked support groups as one of the main ways to relieve 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.

As you access different sources of help, 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 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.

Formal support

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:

• preschools
• early intervention centres
• schools
• medical centres
• hospitals
• psychologists, paediatricians, psychiatrists, occupational therapists, speech pathologists and physiotherapists
• religious communities
• home support and respite care
• local and state government departments.

Two-way communication with these professionals and services is very important. It’s also very important that they acknowledge you 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
According to parents of children with ASD, 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 family stress can be reduced by having support that helps them understand their child and by having a good relationship with the professionals they work with.

Gaps in professional service and support
Generally professionals and formal support services offer caring and knowledgeable support. Still, parents sometimes find there are gaps in awareness and support. For example, parents sometimes report professionals they meet occasionally being rude or ignorant about their child’s challenges. The family might feel the support is inadequate or offering incorrect information.

If you find yourself in this situation, remember that you can be an advocate for yourself – perhaps by pointing out how you feel, asking for more information, or seeking support elsewhere.

Community reactions

ASDs are generally invisible to other people until they notice ASD-related behaviour – for example, your child throwing a tantrum in a public place. You might feel worried or self-conscious, but it won’t always be this way. There are positive ways you can deal with the reactions of other people.

In a recent survey, Australian parents reported that, over time, negative community reactions reduce, seem less important, and have less emotional impact.

Community reactions can be helpful or unhelpful. Unhelpful reactions might include insensitive comments, rudeness or just staring.

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