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Maintaining an Autism Support/Self-Advocacy Group

Six people sitting in a semicircle during a support group.So, you have successfully started a support group and it seems to be going well. As members come and go, keeping your group running smoothly can be a challenge. This resource provides suggestions that you may want to consider to avoid potential problems for the support group in the future.

HOW WILL YOU KNOW HOW EFFECTIVE THE GROUP IS?

Ask for feedback from the members, observe the group, or make a survey tool to get opinions from others.

NAVIGATING POTENTIAL PROBLEMS

Here are some common needs and issues of parents of children with autism and/or adults with ASD:

    • Inaccurate or confusing information about autism
    • Fatigue
    • Transportation
    • Child care
    • Differing levels of needs or severity of symptoms
    • Communication deficits

Here are some common group challenges:

    • Members who take up too much time
    • Side talk
    • Long silences or quiet people
    • Angry people
    • Staying on time
    • Incorrect information given during group
    • Breaches of confidentiality
    • Facilitator mistakes

It may be helpful to have an action plan for these issues just in case they become a challenge in the future.

TAKING CARE OF YOU

Burnout is common and preventable in support group leaders. Some signs of burnout are:

    • Feeling judgmental or resentful of group members
    • Dreading going to the group

What to do if you are going through burnout

    • Remember to take care of yourself
    • Don’t take the group home with you
    • Talk to a co-facilitator or mentor
    • Most importantly don’t forget why you started this group in the first place

KNOW WHERE TO TURN FOR HELP

    • Be sure to identify resources that can help you grow as a support group leader
    • Consistently evaluate the group to make sure it is running smoothly
    • Network with other support group leaders
      • Meet for coffee or lunch discuss challenges you have with your group
      • Attend each other’s groups
    • Roundtables – Ask for support from local resources (quarterly, semi-annually)
    • PAautism.org
      • Use our website to learn about other support groups you might be able to network with
      • Search for interesting topics to bring up in your group meetings
      • Learn about trainings and events that are happening already
    • Call the ASERT Statewide Resource Center at 877-231-4244 and talk with a Resource Center Specialist about your concerns

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This information was developed by the Autism Services, Education, Resources, and Training Collaborative (ASERT). For more information, please contact ASERT at 877-231-4244 or info@PAautism.org. ASERT is funded by the Bureau of Supports for Autism and Special Populations, PA Department of Human Services.