Starting an Autism Support/Self-Advocacy Group

Check with any autism organizations or resource centers for developmental disabilities in your area (e.g. ASERT, Autism Society of America, National Autism Association) to see if a support group that will meet your needs already exists. If there are no existing groups in your area, you may choose to start your own.

Think about what you want to accomplish with your support group and define a specific purpose for the group. Determine how diverse you would like the membership to be (e.g. a group just for individuals with autism in a certain age-range, any age, or disability-wide.) Choose a name for your group and maybe even a logo. Consider how you would like interested individuals to contact you, such as by phone, email, Facebook, or other ways. It is helpful to put this information in writing so that you can share it easily.

Get the word out about your support group. Print flyers to post in schools, churches, supermarkets, and doctor’s offices in your area. Consider contacting a local newspaper about printing an ad and post about the group online. Schools that are set up to serve children with developmental disorders may help to inform parents about your group. Some of the organizations you contacted in step 1 may also be able to help you get the word out. Also, don’t forget to contact ASERT!

Once you have a small group of interested attendees, focus on group leadership and logistics:

Group Leaders

• Designate yourself or someone else to lead and facilitate the group meetings. This person does not have to be an actual member with autism and could be a parent or professional willing to volunteer. You may choose to develop a rotation of individuals to lead discussions or appoint someone to book speakers for your meetings if you think this is something your group would like. You might also consider choosing someone to plan group outings and/or transportation car pools.

Meeting Location

• Decide on a location for your group. Remember that you will be sharing information about your group publicly so you may want to use a public location and not a private home. Look for community meeting rooms, local churches, non-profit organizations, parks, restaurants, or coffee shops.

Meeting Time

• Think about meeting times that would work for the people your group is targeting. Are some still in school? Do some of the members work? Decide how often you want the group to meet, such as weekly, bi-weekly, or monthly. Decide how often you want the group to go on outings if that is something that is important to your group.

Sometimes things don’t work out just as planned. Allow the group to change as the needs of the group change. New members will come and older members will go for varying reasons. Consider asking for feedback from group members to determine if everyone is happy with how things are running. Be willing to talk about possible changes as a group.