Fact sheet how to start a support group for parents of a child with Autism, an Autism Spectrum Disorder


Parents of a child on the autism spectrum often attend a support group where other parents understand they issues they face. These groups may take the form of providing relevant information, relating personal experiences, listening to others' experiences, providing sympathetic understanding and establishing social networks. A support group may also provide ancillary support, such as serving as a voice for the public or engaging in advocacy.


Maintaining contact

Support groups maintain interpersonal contact among their members in a variety of ways. Most groups have traditionally met in person in group sizes that allowed conversational interaction. Support groups also maintain contact through printed newsletters, telephone chains, internet forums, and mailing lists. Some support groups are exclusively online. Your nearest autism or Asperger's association should have a list of support groups in your area.


Since at least 1982, the Internet has provided a new venue for support groups. E-mail, forums and Internet bulletin boards have become popular methods of communication for self-help groups and among facilitated support groups. The Open Directory Project (ODP), also known as Dmoz, has directories with lists of support groups. The volunteer editors adds support groups to the lists even when the forums are not submitted. Google’s directory is using the ODP directory. It is not difficult to find an online support group, but it is hard to find a good one.


Starting your own support group

Is there an existing group in your area?

There may not be any support groups in your area in which case you may choose to start your own. Check first with your nearest autism or Asperger's association that none exist. They may also provide some resources and help promote your group once it is up and running.


How much time and effort can you afford?

You'll need to work out how much time you are willing to dedicate to the group. You may only want to have informal chats over coffee that take little effort. On the other hand, you may want to establish a newsletter, memberships, and guidelines for discussion each meeting in which case you will need a lot of time.


Who will the group be for exactly?

Define your target group. Is it for parents whose child only has Asperger's? Any Autism Spectrum Disorder? Other developmental disorders? It can pay to find the email addresses of existing support group leaders on the Internet and ask them how they set their group up, and how diverse their 'membership' is.


Getting the word out about your support group

Promote your support group. Your nearest autism or Asperger's association may promote your group on their website and newsletter. Small community newspapers may run a small article on Autism Spectrum Disorders and highlight your support group, or at least run an ad. Any local schools that are set up for children with developmental disabilities may tell parents about your group. Posters can be put up at schools, churches, doctor offices and supermarkets.


Setting guidelines and delegating tasks

Once you have a small core of parents who are keen, develop basic guidelines and tasks:

• Where and how often will the support group meet?

• Will their be a budget and who controls the money?

• Who will be responsible for various tasks in running the group?

• Will there be child-minding involved?

• Will there be refreshments?

Once other people are involved, guidelines need to be established. You may have wanted to run an informal group. Others may want a highly structured one with guest speakers. Were the meetings to be in someone's home, or in a community hall? Be flexible, incorporate everyone's suggestions and form the basic guidelines that will allow your group to get going.

Before each meeting, mail or email a handout with the topic for discussion, when and where the meeting is, and contact numbers of the other parents. Don't be discouraged if very few people show at first - these groups take time to develop! Encourage parents to get in touch with each other outside of the group. These friendships can be a huge help when parenting gets exhausting.


Other ideas

Contact local professionals about being a guest speaker once you have a good number attending.

Have definite time limits so that babysitting is easy to coordinate.

Have guidelines for handling people who talk too much or like to interrupt.

Remember to laugh and have a good time.

Always sit in a circle - parents want to share, not attend a lecture!


See the Family and Carer issues section of the website for more information.


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Parents of a child on the autism spectrum often attend a support group where other parents understand they issues they face and learn from each other about better parenting, resources and early intervention strategies