ADDult SUPPORT GROUPS COME IN ALL SHAPES AND SIZES

More than once, I have heard the question "what is a support group anyway?" And even though groups have been my "thing" over a long career as a psychiatric nurse, and I have long been interested in self-help or support groups, I still find myself hedging and muttering a half-baked reply to this question. I know that I am not alone in my confusion. In the literature about the self-help movement, opinions abound about the "correct" way to run groups, and different people use a variety of different labels to describe these groups. Sometimes, unfortunately, a lot of time and breath is wasted in debate about the best way or the right way to run an ADD adult support group. I have come to the conclusion that there is no such animal. ADD adult support groups come in all kinds of configurations, and they all have their advantages and disadvantages. I would venture to say that most people have a mental picture of a "classic" support group and that the elements are something like these: 1) A support group is a small discussion group. 2) A support group is led by peers, not professionals. 3) A support group addresses a problem common to all members. 4) A support group is free. The reality, however, is something different. Except for #3, none of these is common to all ADD support groups. Even #3 can be debatable, when you consider that many self-diagnosed people come into ADD groups with pressing problems that are not related to ADD. I do not mean to propose that a group with these elements is the ideal. Although these elements are presented in the self-help literature as guiding principles for support, or self-help groups, there are ways and reasons to change or bend the "rules" without losing the benefits of a grass roots group. The most important aspect of a self-help/support group is the "self-help" part. The power of these groups comes from the member to member exchanges that occur and the idea that people with problems have the ability to help themselves, with a little help from their friends. In the following discussion, I will explore the ways that different group formats can meet the needs of members, and how the groups can retain the benefits of self-help principles in these different configurations. We will begin with my personal definition of a support group: A support group provides help and support to it's members. It can have a variety of structures, but it does need some structure. It is organized and run by people who are affected by those problem (in this case, ADD).

Leadership Issues - Before we get into a discussion of group structure or format, I will explore some of the issues involved in group leadership, since this is also a very fuzzy area for many of us. Many ADD support groups (at least 1/3) are led by mental health professionals. How can these groups call themselves support or self/help groups? Well, I won't back off on my assertion that groups should be organized and run by people who have the problem. So, how to resolve this conflict? I don't believe that mental health professionals should get out of the business of running self-help/support groups as they have valuable skills to contribute. I do, however, have concerns that the groups can turn into quasi therapy groups with a professional leader, and that the group will be weakened by the temptation to cast the professional leader in too powerful a role. Mental health professionals have their own concerns about becoming involved in self-help/support groups. They worry that lay leaders will not have the skills needed to ensure for member safety, and that groups will be chaotic without skilled leadership. Some are also concerned that they will be responsible or liable for any mishaps occurring in the group. These concerns can be addressed in several ways. First, it is important that the leader (professional or lay) have direct experience with ADD, either as an ADD adult or as a family member. It is preferable that the person have ADD themselves, because it may be hard to be truly empathic when you are observing from the outside. Some exceptional people may be able to take this leap, but most will not. Second, the person or persons leading the group should have spent some time working on their own ADD issues, so that they are free to focus on the concerns of members. When you are in the beginning stages of your own recovery, you are generally too needy to begin thinking about giving back to others. It is no accident that the twelve step program puts the "bringing the message to others" step at the end of the list. Third, there is much evidence from research into self-help groups, and the studies have found that these groups are effective and no more likely to run into trouble when the leaders have no professional experience. That is not to say that mental health professionals have nothing to offer self-help/support groups. They have a valuable set of skills to contribute. The critical factor is how these skills are offered to the group. It is important that the skilled or professional leader (note - not all skilled leaders are mental health professionals) share those skills. When groups are run by a single leader, that leader tends to get burned out by the constant unshared responsibility. Not only that, but the group often leans too heavily on this leader, failing to develop skills and trust in their own ability to solve problems. Often the group comes to resent this leader, as we all do when we feel that we are too dependent on another person. A difficult dynamic can develop, where the members challenge and sabotage the efforts of the leader without taking on any of the tasks needed to run the group. This often has little to do with the personal qualities of the person leading the group. It is a group "thing" . All human beings struggle with the wish to be autonomous and in control coexisting with the wish to be taken care of. These two opposing desires war with one another, and it is something that can be observed in all groups of people, be they work or social groups. While it is not possible to wave a magic wand and instantly do away with this very human struggle, there are ways to nudge the functioning of a group in a healthier direction. One of the ways, you've guessed it, is to share the leadership. That doesn't mean that you can merely divide the leadership tasks evenly among the group in a random fashion. In any group there will be members at different levels of readiness to assume various roles. The simplest roles involve the housekeeping functions, such as setting up the room, making coffee and copying materials. I recommend that everyone who is part of a group be given some task fairly early on. Brand new members, of course, are just getting acclimated and can be granted dispensation for a time. By the time a member has attended 3 or 4 meetings, however, he or she can and should be included in the running of the group, beginning with the simple tasks. Most people, however, will not be happy assuming the housekeeping details forever. They will want to become more involved as their comfort level increases. One roadblock to this, however, is that it is often hard for prospective helpers or leaders to figure out what to do to help. The current leader or leadership group may seem like a closed circle, with no room for the newcomer. That of course, is just a perception. Often, it is not a matter of an "inner circle" that just wants to hog the leadership roles. But it can seem that way unless the people who are currently running the show are explicit about their wish to be inclusive, and provide clear opportunities for others to "learn the ropes." If someone connected to the support group is qualified and willing, they can contribute by conducting training sessions for others who wish to learn group leadership skills. If there is no one with that skill set within the group, perhaps the group can find someone in the community to conduct training as a donation, or for a reasonable fee. Psychiatric nurses, psychiatric social workers and occupational therapists are good professionals to consider for these roles, as they generally have been well trained as group leaders. The ideal is to have a group with more than one leader or facilitator on tap, so that the leadership functions can be rotated. In the best of all possible worlds a group would be launched by a small core group of potential leaders, and these people would all be involved in the planning. In the real world, however, I know that groups are often the brainchild of a single person, who often has the ADD difficulty with waiting and making long range plans. Don't despair, however, if you are the leader of a group that was founded with great enthusiasm and somewhat less energy invested in the planning department. It is possible to backtrack and to change gears. Find a few people who are interested in running the group with you. Start from scratch, in the sense of putting everything about the group out on the table, for critique and evaluation. Then, as a group, come up with a mission statement and a plan for your new group. Don't view this plan as something written in stone. You need to be flexible to meet the changing needs of your ever changing and growing membership. To assist in your planning, evaluation, or the reworking of your group, I will outline some of the structures that existing groups use to meet members needs. Please note that many existing groups have evolved over time, changing the format as circumstances and membership changes.

Group Structures Educational Groups - This type of group is particularly good for dealing with large numbers of members, or a membership that is constantly in flux. It is generally geared toward new members, with a goal of educating people about ADD. Interaction between group members is usually informal and confined to breaks, while the bulk of the meeting is given over to announcements and lectures by professionals knowledgeable about ADD. Most educational type groups also produce a newsletter, another vehicle for keeping the membership informed about ADD in the educational, medical, legal and practical realms. There is also a nominal fee for membership, covering the costs of producing the newsletter and running other business of the group. Some groups pay their speakers a small fee, or honorarium, while others solicit people who are willing to speak without a fee. A few groups pay a fee for their meeting place, but most find churches or schools that are willing to donate free space. Most of the cost involved in running this type of group is for information resources for the members. Copying materials, building and maintaining a lending library and producing a newsletter all require money. For some groups of this type money is a constant issue, as they struggle to survive on volunteer labor and uncertain sources of funds. A group in Washington state, through trial and error, has devised a workable plan for remaining solvent and able to expand with its growing membership. They have compiled spiral bound booklets containing a wealth of articles, etc. donated by ADD professionals and spokespersons from around the country. These booklets make a profit for the organization. In addition, they have a policy for the lending library that requires a deposit covering the replacement cost of the borrowed item. They have thus plugged up a major money drain for ADD groups with a library - the cost of those materials lost to ADD forgetfulness.

Sharing Groups - This is the type of group that most people think of when they hear the words support group. They are small, largely informal discussion groups whose mission is to provide a forum for ADD adults to share experiences and coping strategies. The structure of these groups is usually simple, involving choosing and attempting to stick to a "topic for the day." Do not be fooled by the simplicity of structure, however, because these groups require the highest level of skill from the leaders. In general, the less inherent structure in a group, the more will be demanded from the leader or facilitator. Also, as the numbers go up in this type of group, it either becomes chaotic or fails to provide opportunities for everyone to participate. For small sharing groups, the optimal number is 8-12 people. If a larger group forms it is advisable to break the larger group into several small ones. Obviously, for this strategy to work there must be more than one potential leader on tap to handle the overflow. The problems that can occur with this type of group are generally related to a lack of structure, fuzzy notions of what the group is supposed to do, and lack of control over who comes into the group. It is recommended that small sharing groups have a written purpose statement and set of rules and guidelines for behavior in the group. These written materials should be given to each new member and read at the beginning of each group. Those who are wishing to start a small sharing group should carefully consider how to handle recruitment of new members. A come-one/come-all policy may not be the best thing for a particular group. In our enthusiasm, many of us start out by trying to be all things to all people. If you want to keep your group small, with fewer surprises and less turnover, you can skip the publicity and recruit new members through word of mouth, with invitations to join coming from existing group members.

Skills Groups - This type of group is for folks who are past the early stages of diagnosis and the grief process. They have already done a considerable amount of self-education regarding ADD and how it affects one's life. The members of a skills group are at the "what comes next?" stage. What comes next, of course, is the hard work of learning new skills and behaviors to compensate for the ADD. This type of group, as you may imagine, is generally much more specific and structured than the small sharing group. In many ways it is like a group coaching session, where members support each other as they attempt new ways of managing old life problems. In some groups the structure is provided by a series of written modules or exercises developed by a facilitator. In other groups, the materials or exercises are the result of a group process, emerging as a group works together over time. Examples of this type of group include the program "Ask About ADD" developed by Steven Ledingham, and "Coaching ...Partners" developed by Lisa Poast. More information about these programs and how to obtain written materials can be found in the ADDA Support Group Leader Training Manual.

12 Step Groups - There are only a handful of these available as of this writing, but I believe this type of group will become more popular in the next several years. For one thing, it seems to be the kind of group that many of us come to much later in the game, after trying all the tricks in the book for coping with ADD in a practical way, without really getting down to the rocky bottom of the serious impact it can have on our lives. We learn about ADD and then put a hasty Band-Aid on our lives, without doing the emotional work or making the tough choices we need to make about life balance. Twelve Step work integrates the spiritual aspects of the ADD journey and provides a framework within which the ADD adult can forgive him or herself and others who have been hurtful or less than understanding about the realities of the disorder. There is a lot of emotional/spiritual baggage picked up along the way when you struggle for a lifetime with this hidden disability. A twelve step group can go a long way toward healing the damage. As far as the structure goes, most of us have had experience with some type of twelve step program. If you have not, I encourage you to attend one of these groups. There should be one that fits you - if you don't have a specific problem with alcohol, for example, chances are that you are close to someone who does. In that case you can go to an al anon or adult children of alcoholics meeting. The structure of twelve step groups is pretty much the same for all types of problems. As a group leader or prospective leader, these groups can be good models for the importance of structure to a group. In twelve step groups there is no leader, per se, but a group of experienced members who share the leadership functions. There is less need for "traffic control" by a facilitator, because there is a highly specific structure in place to keep order and ensure that no one monopolizes or gets off the track. Because of the tight structure, a twelve step group can handle larger numbers of people than the small sharing group. This type of group can be very difficult for an ADD adult who does not have good control over his or her symptoms. Many ADD adults report that they dislike the highly structured meetings, that they find themselves becoming very restless and fidgety. This type of group may be more useful to an adult in later stages of recovery, because it can be more demanding in terms of the ability to listen patiently and tolerate structure. For information on how to start an ADD twelve step group, I refer you to the ADDA Support Group Leader Training Manual, which contains excellent materials on this subject.

Which kind of group will work for us? - The answer to this, of course, will depend on your unique circumstances. If you anticipate large numbers of people an educational group may be best. If you already have a small sharing group that has been meeting for some time, the members may be ready to go on to a skills type format. It is important, however, that you stay flexible and in tune to the changing needs of members. Many successful groups are actually hybrids of the different types of structures. For example, it can work very well to begin with an educational type group to provide a large membership base and pool of volunteers. Often, these groups serve as hubs for a network of smaller sharing, skills based or twelve step groups. The larger educational group refers members to the small groups. Sometimes this is done within a single meeting, with time set aside after the general program for breaking into small groups. I wish you all much success as you form, reform or maintain an ADD adult support group. ADDA has a strong commitment to helping you in your important task. We have a newsletter "Focus on Support Groups" that is designed as a forum for the sharing of your ideas and problems. We have a special area on our website for support groups and we will have an online chat group for leaders beginning in October 1997. Last, but not least, we provide an all day training workshop for support group leaders at our annual conference. Hope to see many of you there!

About the author: Kate Kelly is the author (along with Peggy Ramundo) of a classic book on adult ADD called "You Mean I'm Not Lazy, Stupid, Or Crazy?!" Their recently released new book is called "The ADDed Dimension: Everyday Advice For Adults With ADD". Kate is a member of the National A.D.D.A. board of directors. (c) 1997 Kate Kelly, MSN, RN