The Positive Force of Parent Support Groups

By Ann Palmer
Autism Asperger’s Digest  January/February 2014

Many need to reach out to those who share similar dreams and frustrations, and to feel supported by others with shared experiences. My friends in the autism world have not only broadened my own support system but have also broadened my son’s circle of support that I hope will be there for him throughout his life.

While I was at the beach with my family one day, a woman approached me. She nicely said, “I hope you won’t think I’m being too personal, but is that your son over there?” Eric was enjoying the beach, running back and forth at the water’s edge.

Not knowing what she was going to say about my son, I hesitantly said, “Yes, that’s my son.”

She said, “Does he have autism?”

When I answered yes, she quickly said, “My son has autism, too,” and pointed him out to me in the neighboring group of people on the beach.

We struck up a conversation and immediately had a connection that had nothing to do with the functioning level of our children, or their ages, or what therapy we used. That day on the beach we were strangers who discovered we were members of the same club.

Connecting Brings Rewards

I, like that mom on the beach that day, have always wanted to connect to others who care about someone with autism spectrum disorder (ASD). Over the 28 years that I have known about my son’s diagnosis, I have been actively involved in the autism community, volunteering with support groups locally and at the state level. My involvement with other autism families has been my therapy. Not everyone is comfortable reaching out to other parents and family members in the ASD community, especially right after getting the diagnosis. Some may need time to adjust to the news before wanting to connect to supports in the community. Parents will respond in their own way and do what feels right for them.

But many family members need to reach out to those who share similar dreams and frustrations, and to feel supported by others with shared experiences. The definition of support can be to keep something or somebody upright or in place or to prevent something or somebody from falling. Over the years, other parents and family members of individuals with ASD have definitely held me up and kept me from falling. They have inspired me and made me laugh when nothing seemed funny. They have made me feel a part of something at times when I was feeling very alone. My friends in the autism world have been there for me and my family both at difficult times and at times of celebration. They have not only broadened my own support system but have also broadened my son’s circle of support that I hope will be there for him throughout his life.

Existing Options

To discover opportunities to meet other parents or family members connected to ASD, you should first find out what is already available in your community. The clinic or office where your family member received his diagnosis may be able to direct you to a support group in your area. Sometimes there are groups that meet through the schools or through a local chapter of The Arc, an organization for people with intellectual and developmental disabilities in your community.

Starting Your Own Group

If you are not successful finding an existing group, don’t despair. You may want to start your own group! Developing a support group does not have to be a huge undertaking. You probably already know other parents or family members from your child’s school or from the therapy offices you visit. Invite people to come together at your house or meet at a local restaurant. Meeting at a community park with the kids once a month can be a great way to encourage social opportunities for the children and the parents, and it doesn’t cost anything or require much planning. If only two or three people come, that’s still okay. What’s important is that those who feel the need to connect have the opportunity to do so.

Finding support group participants. If you want to develop a larger, more formal support group, you can start by locating interested participants in your community. Invite anyone connected to ASD (parents, extended family members, individuals with ASD, and professionals) to come together to talk about the interest in the community for developing such a group. Churches, clinics, libraries, or schools may provide a free space for your interest meeting and also for ongoing group meetings. To help get the word out, develop a flyer for the meeting and distribute it in places where families go: schools, libraries, doctors’ offices, speech and occupational therapy offices. Also send the flyer to clinics and evaluation centers where diagnoses are made so new families can find out about your meeting.

Holding an interest meeting. The interest meeting will give everyone the chance to meet each other and help you learn what kind of support your community wants and needs. Provide a short survey that asks people what they would like the support group to offer. Include choices such as adult-only support group meetings, family activities in the community, or educational meetings with speakers. It is also helpful to ask how often people would like to meet and what day of the week would be best. Information you learn from this meeting will help you develop a support group that will reflect the needs of families in your community.

Organizing support group leadership. You will want to recruit others, at the interest meeting and at all group meetings, to help you with organizing future meetings and activities. The more people involved, the less work for each person! Volunteer jobs can include a communications person to notify people about upcoming meetings, a webmaster to manage the website for the group, a speaker recruiter to obtain professionals to address the group, a hospitality person to arrange refreshments for meetings, a social director to plan social activities in the community, and a designated greeter to welcome new families to the group. Support groups can fail due to leader burnout and a lack of volunteer involvement. Don’t be afraid to ask for help!

Involving and Inviting Others

Involving fathers. It may take special effort to involve fathers in your group. While there are fathers who are actively involved in support groups, these groups are typically attended primarily by mothers. If children are not included in the meetings and childcare is not provided, fathers are often the designated parent who stays home with the kids. But fathers need support, too—and have fewer opportunities to find encouragement in their day-to-day lives. Fathers may not be as comfortable talking about their child with their friends or coworkers. Meeting other fathers with a child with ASD can be extremely helpful. My experience has been that fathers feel more encouraged to participate in support groups around activities that include the kids, such as social or sporting activities in the community.

Welcoming autism professionals. The most successful support groups that I have been involved with over the years are those that include not only parents and persons on the spectrum but also professionals who work with individuals with ASD. Teachers, school administrators, therapists, job coaches, and physicians should be invited to be a part of your group. The group can benefit from their expertise and their connections. And the professionals who work hard to help our loved ones need support, too!

Inviting extended family. It is also important to encourage the participation of extended family members. Grandparents, whether living near or far away from their loved one, are often interested in learning more about ASD and being a part of a community of support and should be invited to attend.

Building a community of support is key to helping our loved ones on the spectrum reach their potential and have a successful life. As members of this ASD club, we all really want the same things for our children. We want them to be happy and safe and have a full life. And we want them to be surrounded by people who care about them. Best wishes in developing that circle of support for yourself and your loved one with ASD!

Ann Palmer is an author and presenter. As the director of chapters at the Autism Society of North Carolina, she coordinated close to 50 support groups across the state. Her book, A Friend’s and Relative’s Guide to Supporting the Family with Autism: How Can I Help? (Jessica Kingsley Publishers, 2012), is an AADigest top pick to read when your child is diagnosed with ASD.

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