Starting an Autism Support/Self-Advocacy Group

Check with autism organizations or resource centers for developmental disabilities in your area (e.g., Autism Society of America, National Autism Association) to see if a support group that will meet your needs already exists. Don’t forget to check the Autism Community section on www.PAautism.org for a list! 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/self-advocacy group. Define a specific purpose for the group. Some examples include information/resource sharing, learning from guest speakers, developing public speaking skills/presentations, planning social/recreational events, etc. Determine how diverse you would like the membership to be (e.g.,a group just for individuals with autism, just for parents/caregivers, just for siblings and family members, or a more mixed group.) Choose a name for your group, and maybe even a logo. Consider how you would like interested individuals to contact you (phone, email, Facebook, other). 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, college campuses, and doctor’s offices in your area. Consider contacting a local newspaper about printing an ad or running an article on Autism Spectrum Disorders that highlights your group. Attend conferences and community events and hand out business cards or a flyer about an upcoming meeting. Schools that are set up to serve children with developmental disorders may inform parents about your group. Social media sites like Facebook can also help promote 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 so that we can include your group on our contact list and post your meeting on our calendar.

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

• Group Leaders
  • Designate yourself or another individual to lead and facilitate discussions for group meetings. You may also choose to develop a rotation of individuals to lead discussions, or appoint someone to book speakers for some or all of your meetings.
• Meeting Location
  • Decide on a location for your group. Remember that you will be sharing information about your group publically, so you may want to use a location other than a private home. Look for community meeting rooms, local churches, non-profit organizations, parks, restaurants, or coffee shops. If you plan to provide childcare during meetings, ensure there is appropriate space for the children.
• Meeting Time
  • Think about meeting times that would be appropriate for the people your group is targeting. Decide how often you want the group to meet, such as weekly, bi-weekly, or monthly.

After you have an established group, the last step is to continue to plan for success. Choose individuals or teams to handle different jobs such as booking speakers, preparing talking points, leading meetings, planning events, bringing food, and/or arranging childcare. Continue to ask for feedback from group members about the focus/direction/timing of the meeting, and continue to advertise for new members to keep your group growing.