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Roger N. Meyer "...of a different mind "
Puzzle Pieces Image

ASPIA Sydney
'Understanding the Difference Makes the Difference'

Conference
October 24, 2005
Session II 11 AM - 12:15 PM

Peer Led AS Adult Support Groups
Roger N. Meyer
Copyright 2005, 2008 All Rights Reserved

 

Handouts:

Calendar 2004-2005

Calendar 2005-2006

Portland Group Flyer

*Facilitator Characteristics

Rick Ellis Scale

This morning's checklist for finding a good personal counselor contains many elements to it that also contribute to the success of another kind of personal support sought by many late-diagnosed adults, a peer-led support group.

For this second session, we're going to cover a lot of ground about self-directed AS support groups, so I ask folks to be patient as I present information I've learned about other peer-led support groups during research on my second book, a handbook for peer led adult AS support groups and their members.

A dozen years following the formal roll-out of Asperger Syndrome as an official label, there exist less than twenty-five peer-led support groups. That's internationally, not just in a given country, although the United States has the lion's share of this number. These groups are highly diverse, and during our discussion I'll tell you about some of them.

To start things off, I'd like to refer you to several handouts I've prepared for this session. One is our publicity flyer about the Portland group. It also lists some of our groundrules. I've also included a list of common characteristics shared by many successful peer facilitators. I've included two calendars, one from the year we just completed, and the other from this current calendar year for our group, which began last month. Finally, you'll find a copy of the C. Rick Ellis's Adult Functional Assessment, a long list of AS characteristics that we've found useful in providing focus to large and small facilitated discussion groups in Portland. Rick borrowed most of his characteristics from the list in my book. What makes his adult functional assessment valuable is that it tracks an individual's concerns from an earlier time to now and is a good self-assessment tool that can prove of great value in the early stages of a counseliing relationship.

GROUPS NOT COVERED TODAY

Before we begin, I'd like to be very clear about the kind of support groups I will not discuss today.

BASIC QUESTIONS

This morning we're going to quickly cover some basic questions about adult groups.

WHY ARE THERE SO FEW OF US?

First, why are there so few peer led AS support groups? Is it a matter of big city urban life or numerical 'critical mass'?

No, I don't think so. Peer led support groups exist in large urban centers,medium size cities, and small rural communities. More of them exist in settings dominated by high tech or the arts, but in some of the biggest cities having both, no viable peer-led adult support groups exist. This describes Los Angeles, the Boston metropolitan area, Chicago, Silicon Valley in Northern California, and high-tech manufacturing and information technology centers in Ireland, Israel, India, Japan, Korea, and even here, in Australia. There is no direct connection between the number of folks with high brain power and likely Asperger Syndrome, and existence of support groups in their respective communities.

Middle and Advanced Age Leadership

How is that the peer facilitated groups that have done well are all started by Asperger men and women in their middle years and beyond? For the most part, groups started by younger adults have short lives. What is it about middle age and beyond that suddenly frees individuals, causing them to look around and say to themselves...

"Why not? I can do it!"

The number of more able Asperger Syndrome adults in this category really turns out to be quite small. Small doesn't mean non-existent, but the folks who do step forward have made a positive commitment to make a difference in other AS adults' lives.

Does convenient transportation play a role?

Having a good public transit system does seem to make a difference in some places, but not all. There are cities well served by excellent public transportation where less able Asperger Syndrome adults simply do not attend support groups that convene a short coach, subway, or tram trip away. Other groups thrive where there's virtually no public transportation system, and in urban sprawl areas dependent upon private transportation. My city, Portland, Oregon falls somewhere in the middle of transportation convenience. We have a superb central city public transit system, but many of our members come from outlying areas poorly served, if at all, by inter-urban public transit.

University Settings?

Attwood and others have observed that the ivory towers of academe, our universities and colleges, are ideal employment settings for AS adults, and so they are. However, despite a high number of AS faculty, there are no self-directed, long-lived AS student support groups. In university communities, there are active AS organizations highly supportive of child and adolescent education and skill-building. Several of these communities do have adult support groups, but the group membership does not reflect an equally high number of adults involved in university life. We can go into the reasons for this in our discussion.

WHY AND HOW TO GROUPS FORM?

OK. Going from what we don't find, let's move into what we DO find. First, how and why do peer-led adult support groups come about? First off, let me state that they are the brainchildren of one, at most two, persons.

Individual Motivation

Every facilitator I interviewed or who responded to a lengthy questionnaire for my forthcoming guide to starting and maintaining peer-led AS support groups said, in one way or another, that the need was so obvious, so what's the big deal? And then they went ahead and started one.

It's important to note the following fact: All facilitators I researched said that their inviting others to join them "just happened." They were lonely, but not immobilized by their social isolation. They broke through their inertia. They aren't hermits, but to a person none of them describes himself or herself as a social butterfly.

Previous failure of others' efforts

I started the Portland AS support group in reaction to two failed, manipulated groups facilitated by academic and social service professionals who should have known better, but didn't and were about to resurrect an adult group on that flawed model the third time. When I heard they were about to do this -- with the likelihood of their having a tractible pool of folks in side-show panels for them to trot around our metropolitan area to show their research work off -- I stepped in and said that was enough. Others agreed, and our group formed that night.

I don't believe the reason why we started our Portland group is typical, but the reason why I took the reigns and the values behind how our group operates may be important to discuss in a little while.

Support by local Asperger Syndrome Community Organizations

This is a recent phenomenon. Most long-established AS oriented community and regional organizations have long focused on child rearing, educational, and service issues for children and adolescents. As their members' children have aged, they have recognized three important points:

FACILITATOR CHARACTERISTICS

Here, I ask you to look at the list of characteristics in your handout. There's no need read them out loud, but I'd like you to take a minute of silent reading to review them.

I'd like to emphasize four points.

FACTILITATOR CHARACTERISTICS - Entrepreneurs!

Let me explain this idea a bit further. A good number of us ...

We'll talk about founderitis and its pitfalls during our discussion period. Sometimes the only identifiable factor keeping the group together may be the presence of a charismatic leader. That phenomenon has its advantages, but also has a downside, which we can also discuss.

GROUP DYNAMICS

The one thing I don't wish to do here is assert that there is an absolute right way or wrong way that successful groups operate. Needless to say, we're successful because we work well and hard to make the group a positive experience for all of our members. In my research, I was mindful of the following issues, which I will discuss at length in my forthcoming book.

Rules

One of your handouts is our group flyer. On it, are printed our written group rules.

Groups meeting for the first time can run the gamut from being very controlled to really chaotic. The purpose of support group rules should be to set the tone, not the content or the scope of activities of the group. What the group does and what it becomes will shift over time. Rules, like a governing constitution, shouldn't lock the group into an immutable process or format. If they do so, the group is bound to implode or explode.

Aspies are rule freaks. We like to know the rules. When there aren't rules for everything, some of us get very upset. While our personal mental needs for clearly defined rules are understandable, those same needs cannot be acted out inappropriately in a social setting. A support group is definitely a social setting.

Excessive rule making behavior in an AS adult is a key sign of a person who must exert control over others. Their behavior is often combative and confrontational There's no room in a peer-led support group for these behaviors. Such individuals select themselves out of a support group early, are asked to leave, or, preferably, are never admitted to the support group in the first place. In this regard, we'll be talking about screening new members in a minute.

To summarize this little discussion of rules, whenever people get together, certain unwritten rules of conduct are in operation. Every now and then, we have to add a written rule, but that's extremely rare. Where there is doubt or confusion about them, we have enough good heads in our support groups for members to articulate and explain these rules. It's this type of each-one-teach-one process that allows most well-run peer-led support groups to establish a sense of internal discipline and harmony.

Structure

A word about structure. Succesful groups that start out relatively unstructured eventually gravitate towards greater structure. "Structure" means a reliable, published schedule and firm agenda with meetings held at the same time and place. The same can be said of the format of the meeting. Loosely facilitated groups appear to drift towards "tighter," more focused agendas.

Many groups appear to fall somewhere in the "middle" of being structured versus being unstructured. Peripatetic groups (groups with no fixed meeting place) or groups with changing schedules and agendas do not fare well. Such groups' attendance figures yo-yo up and down. Very soon, they collapse because there isn't enough to them that's reliable, consistent, and predictable.

Just a word on agenda, and agenda-setting. There is no hard and fast rule about what works best. Some facilitators set the agenda, including a discussion topic for the meeting, while other facilitators open topic and activity selection for the group to decide. Generally, the more advance notice folks have about a discussion topic or an activity, the better it is for everyone. No one likes to come to meetings expecting one thing and be immediately faced with something they didn't expect.

One last thing about being too formal or rigid about pre-setting topics or the major theme of any given meeting. Some groups seem to work best when there's a reliable number of folks who always come to the meetings. When the topic doesn't interest some members, they may not show up. If facilitators rather than the group decide on an activity or topic, they may undermine the social and emotional value of people just meeting together, for whatever reason.

Dynamics

Size of the group definitely affects its dynamics.

We are susceptible to becoming passive when we feel overwhelmed.

The primary activity or the purpose of the group at a given time may be affected by sheer numbers, but not always. Ideally, discussion groups benefit members by being small in size so folks can take turns talking without waiting too long. Skills training sessions do allow for larger numbers, but exercises or role plays work better when the large group is broken into dyads or triads of people, or small groups that have written, scripted role-plays with the option for role exchanges.

One thing to consider when thinking about size of the group's membership is to think of ways to offer a variety of group experiences over time to sustain individual members' interests and continue to attract new members.

GOVERNANCE

Member Feedback

Facilitators who establish formal means of feedback (usually written but anonymous) about how members feel the group is being conducted report greater personal change to their style than facilitators without such feedback mechanisms. In the Portland group, I developed a form titled "How the Meeting Went Today." In the early days, I asked members to fill it out after almost every meeting.

That habit disappeared as the group grew in size and our discussions became more complex. To this day, however, the form itself is still in each new member's information packet. There is also a form tthat asks that individuals identify what they want from the group. On occasison, that form is submitted to the facilitators after the member's first meeting, but again, this is formal practice had largely disappeared until we adopted our new format last year.

Since March 2004, we've had at least four facilitators. We now have six. We all want to know know well we're all doing. We especially need information from members who are shy or taciturn. Our change of format, one that has recently involved formal but loosely facilitated communication skills training, has loostened many members up to the point where, as a result of their participation during the exercises, they've begun to be very articulate about what has worked and what hasn't. At the conclusion of our workshops, we are very careful to leave time for feedback, which we record on butcher paper and distribute by group Email.

Facilitator Sharing Leadership Concerns

Even when facilitators find it difficult to quickly change their style, we can share our concerns about how we're doing by asking people directly. In our Portland group, we've noticed that group members tolerate and then welcome our different styles as leaders. Our style of facilitating does change perhaps not at once, but over time.

Not all facilitators are comfortable about sharing their concerns about how they're doing with their members. They bottle them up. Those who hold their concerns inside express frustration and feel trapped by something they've begun or taken on. Upon further inquiry, I discovered that such leaders have fundamental difficulty asking others for help. For those with this problem, I was curious whether over time, they might lose interest or abandon their groups altogether. When I recently re-contacted some of these folks, I found that some had given up.

Opening yourself up to feedback, but then going the extra step in reciprocating by sharing your concerns requires guts, but ultimately, fairly good feelings about yourself.

Generally, facilitators who are open with the group about their concerns report more feedback of all kinds from members than facilitators who report they are uncomfortable sharing their concerns.

Group Composition

Some peer-led groups remain homogenous, some change their character quite earlier in their history, while others start out as heterogeneous.

Homogeneous - closed and open

Some groups started first by AS adults without sponsorship assistance are more homogeneous. They are comprised of AS adults only with an age range starting in the mid to late twenties on up. Some groups are what I'd call closed, while others are open. The closed groups are really what I call an extended circle of friends. These few groups don't readily admit new members. Given their closed character, it's safe to call them exclusive groups. I don't disparage the existence or character of these groups. They are part of the rich diversity characterising AS adult support groups.

Other groups that start out with all members knowing one another are open. They can be inclusive. Our Portland group started out that way with our original members all knowing one another from their past experience in two failed support groups. Incidentally, both of those earlier failed groups were exclusive, with membership tightly controlled by professionals who don't openly acknowledge they mayt be on the spectrum themselves.

Initially Homogeneous but now changed

Groups sponsored by Asperger parent organizations' sponsorship respond to the interests of the larger community, including, of course, non-autistic individuals. On the other hand, several adult support groups started independent of AS parent organizations may be drawn, quite early, into including professionals and autism industry experts from the community at large. Without exception, their facilitators have some kind of connection with the mental health or education system. Once they stabilize their existence, their facilitators often declare their relationship with medical and psychological providers and with the school system. If we have time in our discussion, I'll have more to say about my concerns regarding such cozy arrangements.

Heterogeneous from the Beginning

Heterogeneous groups routinely admit or invite parents, professionals, caregivers, friends, and guests who are not on the spectrum. These groups may also have a very diverse age range, all the way from young adolescent to mature adults. Over time, these heterogeneous groups may shake out into smaller groups with homogeneous characteristics.

When care givers, professionals or parents are present, it isn't uncommon for some groups, meeting at the same time and location, to allow for separate meetings of "spectrum sitters" and non-spectrum folks. Sometimes this is done routinely. Other times, it is done when certain topics arise that would be awkward to handle in a mixed group.

The Akward Age 18 - Mid-twenties

Facilitators of groups composed of mature adults all share a concern that addressing the social and emotional needs of young adults, age 18 to the mid-twenties, remains a huge problem. In several instances, groups that have no age restrictions other than a floor of age 18 "lose" young members who first start to attend and then drop out. Facilitators report that those younger members do not return, even years later. That happened with us in Portland, and as it happened, we were disappointed to see it happen. Because we were so new, so small and their departure was so noticeable, we discussed this issue in the group quite often. Because we were primarily a discussion group rather than having an activity base, we concluded that young adults didn't have enough life experience to have gone through many of changes we'd gone through as older adults. Our experiences didn't resonate with them, so they drifted away.

GOVERNANCE - GATEKEEPING AND SCREENING

Most facilitators do not formally screen newcomers. I was surprised when I learned this. We do screen, very deliberately, in Portland. I'll talk about why in a minute.

Self-Screening

The usual arrangement for newcomers is that they hear about the group from publicity in the media, including the Internet. Some groups use widely read newspapers to announce their meetings. Not everyone who reads or hears announcements comes. A newcomer may attend one or a few meetings, then drop away.

Referrals by Professionals

Some adults are referred by professionals familiar with the group's level of sophistication and activities. Professional referrals thus perform a quiet but appreciated screening function.

Screening by Parents and Care Givers

If the group is of mixed age, many young adults are first brought to the group by their parents because transportation is an issue.

Screening by Existing Group Members

New member attendance based on word of mouth from existing group members is not common. Sometimes newcomers will call or Email the facilitator with questions. More often, new folks "just show up." If the group is primarily a shared social or leisure activity group, new 'show-ups' are welcome as they flesh out what might otherwise be too small a group.

Screening for Purpose of Group

If the group is a skills group (a rarity, but skills groups do exist), the facilitator usually wants a newcomer to call. The call allows the facilitator to prepare an already established group for the newcomer, or to answer questions from the individuals about "where" the group is with respect to its formal schedule or curriculum.

Determining Social Communication Competency - Portland Example

I may be one of the few peer facilitators who screens. I use an adult's ability to talk on the phone as a screening tool. In response to our publicity, people call and Email me all the time, and I respond immediately. If their contact is by Email I provide very general information about the support group and ask them to call me. Until recently, we didn't have a web site. We now have a fledgling web site containing contact information.

Why Screening?

Many AS individuals live in the virtual reality world of the Internet and electronic games. I happen to very strongly believe that everyone also lives in the real world, whether they'd like to or not. My professional work moves me to think that way. Personally, I do not indulge dreamers who don't act on their dreams. This doesn't mean that I expect our members to be employed. We have folks in all stages and statuses of life, but all of them, more or less, live in the real world.

In my opening remarks, I stated what our group was not. It is not a group for folks who live most of their lives as couch potatoes glued to a TV set or keyboard potatoes glued to their monitors.

To some of you, my gatekeeping using the telephone may seem unfair. We all know there are AS people who are uncomfortable using the phone. It's like tearing out tufts of hair. And yes, I can be accused of being a facilitator who wants folks "just like me" in the group. That isn't true, however, except in this single respect: Up to the Spring of last year, the Portland group was relatively high level discussion group with some social activities thrown in for good measure. However,"high level" didn't mean "highly structured." Until the Spring of last year, the Portland group was so loosely structured that its very size as a discussion group generated an untenable, chaotic environment. We changed because we had long before reached critical mass where a large group discussion format supported by a single facilitator was working. People kept on coming, but everyone knew we had to change, and so we did.

For the moment, I'd like to keep going with the presentation, and then we can talk about how the Portland group has changed. Other peer-led support groups are evolving as we speak. The one thing I don't wish to do is establish what we've become as the gold standard. It isn't. We're light years away from where we first started. That's all.

LEADERSHIP TRAINING AND SUCCESSION ISSUES

I'd like now to shift to our last topic: Leadership training and succession

The fact that our Portland group has changed so much in the last year and a half leads me to the last topic of leadership training and succession. It's the main reason I'm writing my second book, a guide for peer facilitators and support group members.

From this point on, I'll be pitching you a curve. Implicit in my remarks is the fact that we don't live forever. Many of us would prefer to leave some kind of a legacy in our wake. As the founder of our Portland group I've always hoped that others will take my place. For that to happen, I had a self-interest in training new leadership. That interest has paid off.

Within this list are the values under which our Portland group has always operated. The list also identifies techniques designed to assure that when we change engines, the whole train isn't going to derail. I'll go into each one in a minute.

SOME PLAIN TALK ABOUT ASPIE LEADERS

A few introductory remarks. Like most Asperger Syndrome men who use rather blunt language and equally blunt action, I'm a control freak. Actually, many leaders are, but as Aspies, we have special problems limiting our need to be detail oriented to the extreme.

We've already established that there are a few folks in this room who are on the autistic spectrum, and others who aren't, but I'd like you to indulge me in a little stand up exercise for a minute.

[AUDIENCE STANDS]

Please turn to the person to your right, and, in a normal tone of voice, just say these four words. I know they don't apply to you, of course, but say them anyway. Everyone. One, Two, Three....

"I'm a control freak!"

Now turn to the person on your left, and raise your voice a bit. Also, take your hands, and ball them into fists, but keep them by your sides. We'll say the same thing again. Ready? One, Two, Three....

"I'm a control freak!"

Finally, turn to the front, open your hands, hold them loosely by your sides, and say those four words, just to yourself, with no whispering.

Here we go. One, Two, Three.

[AUDIENCE IS SILENT]

Thank you. You may be seated.

We all just went through a little lesson in self-control. And that's what successful leadership is all about.

Among adults with AS there aren't many people who share all the common characteristics of successful facilitators. But we all place a premium on being smart. So, let's get smart about leadership.

You don't need all the skills if you delegate control to those who have them.

Let's look at this third point for a minute. Aspies don't delegate well or at all. We are control freaks. Yes we are.

But can we learn how to control our control freak-ism? Yes, we can. And we actually do that all the time.

AS parents with AS kids do it. If AS folks couldn't learn how to let go, their AS kids would never grow up.

So, let's look at the points I bulleted above, starting with "Self Awareness" and ending with "Fade Away."

LEADERSHIP TRAINING AND SUCCESSION ISSUES

Let's go through them.

SHOW THEM 

Have folks come along with you and do this detail work with you. Isn't it amazing how others have your same orientation to detail? This is Asperger Syndrome. Have it work for you. Have others make it work for them, and for the group.

Show tolerance with the different ways people get the same task done.

Fight your perfectionism and be prepared to settle in with the idea of...

"Good Enough!"

Let's look at these last three items separately.

LEADERSHIP TRAINING, SHARING AND SUCCESSION ISSUES

You pick the co-facilitators

Selection of co-facilitators cannot solely be left to the group. Factions and cliques -- things you do not want to see in a support group -- are a common outcome of relatively small groups of people who do not interact directly with one another on a daily basis.

Start simply. Try things out with one person. Once you've found a co-facilitator, as that person feels comfortable in the role, both of you can share the responsibility of identifying other potential co-facilitators from within the membership. Replicate this process every time you add or replace co-facilitators. Use discussion and consensus-building with your entire group of co-facilitators to select candidates.

Meet with your co-facilitators privately to develop an esprit de corps, but don't try to work out all the details. Use the support group meetings as opportunities for all of you to develop your facilitation skills. Most importantly, strive to shrink your place, your standing, to become a first among equals.

Share the various roles and tasks of leadership

Be tolerant and supportive of your co-facilitators' leadership. Express any concerns you have about your co-facilitators corrections privately, not before support group members who aren't co-facilitators.

Fade away

Two fears of many AS individuals are fear of abandonment and fear of the unknown. Don't feed that fear by being vague or mysterious about what you're doing.

Don't suddenly jump ship or disappear. Fade away, As you do so, explain, explain, explain what you are doing. It's necessary to reassure people as you gradually relinquish the reigns.

Here are four fundamental rules about fading:

OUR BABY'S WALKING ON HER OWN

If you follow these steps, and if you let others help you, there's one thing for sure. Your baby's going to walk on its own. And that's what this is all about, isn't it?

-----

[Handout]

* CHARACTERISTICS OF SUCCESSFUL PEER FACILITATORS

Roger N. Meyer

Copyright 2005 All Rights Reserved

Here are some common characteristics of peer facilitators. Not all of us share every of these characteristics, but most of us do.

We....

 

Copyright Issues

 

This article is copyright, all rights reserved by the author, Roger N. Meyer.  It may be reproduced in single copy once for personal use, and in no more than ten copies total for educational purposes.  Fair Use is authorized for all purposes and under conditions established by US Statute and the International Copyright Convention, to which the United States is a signatory nation.  No person shall publish, distribute, copy, or by other means make this material available to others for purposes of personal gain or professional self-aggrandizement.  Individuals wishing permission to exercise other than fair use or limited distribution as outlined above must contact the author, in writing, and receive explicit written permission from the author prior to engaging in further use of this material.

 

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