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Creating a Support Group

The Adam’s County Adult Autism Support Group is the topic of today’s blog post. I have had the group for 6 years now. It is not meeting at the moment due to safety reasons (Covid-19), but I am hoping to reopen it again in the spring. What I would like to talk about, is how my group was started, various activities that it has had, and a few difficulties.

Though the group was founded on September 4th, 2014 I had wanted to have a group for a while earlier. I go to Philhaven (CAD) for autism. At one time, they had a support group that I went to. The group was small, and it was held in one of the rooms in Philhaven. It was led by two counselors. The group was to be an opportunity, where participants could discuss various things that were going on in their lives, that they found difficult. The group started with introductions every time. Unfortunately, the introductions often took up most of the meeting, though sometimes the group was quite useful, which is why I went. One member, for example, had insurance problems that were discussed. As most people know, insurance is a must and to not have any is a disaster. This participant lost his insurance.

One problem I did have with the group was not being able to attend it every week due to its location. I went to Philhaven every two weeks for an appointment which allowed me to make the group every two weeks. Eventually the leaders tried an experiment. They turned the group over to the participants who were to take a vote about group rules during the week I wasn’t able to attend. The group decided participants must go three of out four weeks. Needless to say, I had to drop the group. I decided to start a group of my own. I wanted a group that was convenient to me. I thought there had to be adults, on the spectrum, that lived in my area. The problem was that I wasn’t sure how to start a group.

Weeks without a support group dragged on and on. What I decided to do was start discussing ideas for my future support group. I didn’t know when I would have one, but I figured that sometime I would. On many trips back from Philhaven appointments, my mom and I would brainstorm ideas for support group activities and write them down. This way, once I got my group started, I would have a list of ideas to use and wouldn’t be so likely to run out of ideas.

Finally, I was able to get help in starting a group. I was signed up for the Autism Waiver, and put on the waiting list. When I came back from a trip to Taiwan (to visit my brother) I discovered that I had been accepted. The first provider that I talked to was Focus Behavioral Health, and they provided a good talk. The presenter said Focus could help me start a support group. So my quest to starting a group began!

The first thing I did was attend two different support groups to see what they were like. The Autism York group was the first I attended, and they had a wide array of activities for people to participate in, and they also offered food and drink. In contrast, I also attended an ASAN (Autism Self Advocacy Network) group which featured a person with autism leading a meeting, and allowing people to give their opinions and experiences on a set topic. The leader appeared very confident. He also had a set of rules that he read off at the beginning of the meeting to keep it in good order. The group did not have any refreshments. I liked both groups for different reasons and decided to “borrow” elements from both groups. I had structure and content like the ASAN group, as well as refreshments and socialization like the Autism York meeting I had attended. The prize box and its use for game prizes and birthday prizes, was an invention of my own. For a while I continued to attend the ASAN group besides running my group, and its leader sometimes attended mine.

A Focus staff person and I went around, and put up fliers to recruit people to the group. We also checked various locations to find a place to hold the group. A small church in the New Oxford area had a room for us to use. Another aspect of the group I had to figure out was the rules. Instead of reading them at the beginning of the meeting I had them hung up. Eventually after people knew the rules, I stopped hanging them up, and rolled up the paper to save for a time if a problem would arise.

The day my group debuted I was nervous, but excited. I had a great attendance. Focus staff brought many of the people who would become regulars. We also got a person from Fairfield who discovered the group via the fliers that I had put up. The original format was some kind of discussion, and then a social activity. People had a chance to get a snack at the end of the meeting and socialize. I would feel energized by the end of the meetings. Eventually more variation occurred.

Support group activities have varied considerably over the years, since it started. For quite a while we did discussion questions, and at some point I may want to discuss a topic again. “Status” is an activity done at the beginning of some meetings, where participants tell what is on their mind at the time. If a person doesn’t have anything to say, then they can say, “pass.” One of the most important tenants of my group is for people to feel that the meeting is a comfortable and safe space. This idea was featured at my booth, at the Autism Walk and Expo that I manned every year.

We also have various kinds of games that we play at some meetings. Some are themed around holidays. We had a bingo game I designed for both Halloween and also Thanksgiving. We also had trivia games that played similarly to Jeopardy with various categories. Speaking of games, we also occasionally had “Game Night” where the participants actually played board games.

Every year (with the exception of this year since we’re closed) we had a Christmas game, “Dirty Santa” which we played. In this game wrapped gifts are put on the table. The first time, the gifts were provided, and subsequent times we provided gifts and allowed participants to bring wrapped gifts as well. A “gag” gift and some kind of great gift (like money) was also incorporated into the game in later years. All players picked a number, and when their number was called they went to the table and picked a gift. They could also “steal” gifts from other players during their turns in lieu of picking a gift. This game seemed to be a fan-favorite of the group.

We would also have theme nights. Star Wars night was popular to a lot of participants where the game and even the food was Star Wars themed. We also had a “Stars” night where we played a Jeopardy like game with every category having the word “Star” in it to some capacity like “Stars in the Sky,” Star Wars etc. For Star Wars themed games, they were modified so that people not familiar with Star Wars could play. The modification was usually an extra category with general knowledge questions that most people who have attended the group would know the answers to.

Other various activities were done at the support group. We watched a movie about Temple Grandin, we had a few lectures about issues such as Prosopagnosia (Face Blindness) and even had a few guest speakers speak about stress. Our one guest speaker gave out free head and neck massages to those who wanted them.

We had a few outdoor activities as well. We played miniature golf at Hickory Falls three times, and had a picnic at the park where people ate, drank sodas or water, socialized and played either board games or a kickball like game. For a different type of meeting, we met at a pottery studio and everyone saw how pottery was made and got to paint two pieces of pottery to take home.

In recent times we had a few meetings that were on serious topics that would help people on the spectrum. We had a meeting at a firehouse and also one at the 9-1-1 call center. We also made goodie bags for the troops that we sent. A meeting with a police officer as a guest speaker, was talked about, but due to the season being cut short because of the pandemic, it hasn’t yet come to fruition, but I would still like to have the meeting.

Once a year we normally have an anniversary meeting. They are held in September when my group was started, and include cake. We also once had created a large puzzle made with foam board where people took turns putting in pieces until it was complete.

All good things do have their challenges. Occasionally the group is smaller than I would like. Group size is actually a large problem when deciding activities. At the moment we haven’t figured out any accurate way to determine how many people will come. I’d say fifteen people come on average but groups can be under ten people and can occasionally go over twenty people. This fluctuation makes it hard to know how many supplies to buy for the activities, and how many refreshments to purchase. I would like to have the group paint rocks, but I can’t until I get a more accurate count of people coming. I tried using R.S.V.P., but only a handful of people ever responded. I also had to call off a number of times due to bad weather and these decisions are incredibly hard to make.

Having a support group, can be rewarding, but it can be a lot of work, and have its challenges. A good leader needs to come up with a lot of different ideas of activities, to keep people engaged and want to come back to the meetings. Another important thing to remember is when a door is shut (like the original meetings at Philhaven), sometimes a window is opened and a new opportunity emerges (ability to start a more convenient support group.)

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