Division TEACCH sponsored the
"Workshop on Developing Social Groups for
Children, Adolescents, and Adults with Autism"
Presentations were made by Lee Marcus, Kay Flinn,
Nicole Ament, Jenny Eigenrauch, Barbara Bianco and John Thomas.
April 9th, 1999
Introductory Remarks
Lee Marcus began the session by describing the history of social skills instruction with clients at TEACCH. He said that Gary Mesibov started the first adult social skills group in the early 1980s. This educational effort was later extended to the teen-age population, then older children, and finally younger children. Extending the effort to teach social skills to younger and younger age groups often depended in part on the Center being aware of enough people in any given age group to form a "critical mass" for participation. This was not merely a matter of the raw numbers of identified clients in each group, but also depended on such factors as who was logistically able to participate, who wanted to participate, and who was developmentally ready to begin the challenging task of learning some of the tools for effective social interactions.
A quote from Oliver Sacks illustrated the magnitude of the task at hand for people with autism. Sacks described Temple Grandin's early awareness of "something" happening between other people, that did not happen between others and herself -- "something swift, subtle, constantly changing -- an exchange of meanings, a negotiation, a swiftness of understanding so remarkable that sometimes she wondered if they were all telepathic." This "something" was social signals. While Grandin now understands that these signals exist and are used by others, she herself can still only infer that they are being used. She remains unable to "conceive the many-leveled, kaleidoscopic states of mind" that are implied by these signals.
Lee pointed out that Grandin, like many other autistic people, grew up wanting very much to be a part of the social world that eddied around her, but not only was she unable to name and read the social signals shared by her peers, she herself gave off very odd social signals that often produced social rejection rather than the social acceptance she desired. TEACCH sponsorship of and assistance with teaching social skills to all age groups is a direct response to that human desire to "connect" with another -- a desire that seems to be present in autistic people just as it is in us "normals."
Social skills groups are designed to teach specific skills relating to several dimensions of social interaction. These dimensions involve understanding social conventions, development of empathy and affective expression, imitation, play and imagination, space and social boundaries, conversation, and adapting and coping as social situations change. The effectiveness of social skills groups can be evaluated on the basis of whether or not there is any noticeable improvement in these areas by the participants, who themselves are assessed for readiness and "fit" prior to joining the group.
Lee observed that when a group was being planned, it was important to think ahead about a number of issues, such as whether the group should be conceptualized as a "training" ground or as a sort of "club" that engaged in activities, how to manage individual needs and goals within a group context, the structure of the group time and area, and the inclusion (or exclusion) of non-autistic peers. As an general rule, however, Less said that the goals of all social groups were to have fun in a social setting so as to improve (1) participants' understanding of social situations and (2) their ability to know and use basic skills in order to engage in age-appropriate social interactions.
Despite this unifying goal, between social groups there is a necessary difference in emphases because of the participants' varying ages. Groups with younger members tend to emphasize explicit teaching of social conventions, are more highly structured and managed by the group conveners, and tend to meet regularly in a single, socially "safe" location. As the age of group participants increases, the emphasis on explicit teaching of social rules decreases, and group participants assume more direct control over planning group events. This may include group outings into the surrounding community for various activities. Lee warned, however, that for many group participants (particularly in older-age groups) there may have been a long history of unsuccessful peer relations and interactions in the context of other social groups, which may set up negative expectations or reservations to which the group conveners will need to be sensitive.
Finally, Lee offered several tips for running a successful social skills group. First on the list was for the conveners to become familiar with the group members before they joined, so as to avoid egregious mismatches of individuals within a single group that might undermine the group dynamic. For that is another way to have a successful social skills group, and the second success tip -- to encourage the participants to feel that they belong to a group. This cannot be done well if the group's conveners, who are not only the teachers but also the role models, fail to join in all of the group's activities. Leader participation, then, is Lee's third tip for successful social skills groups. Conveners should also be sure to consider the members' interests when planning activities. And the group should have a single, regular meeting place, even if for the older groups some of the group activities wind up being held in the larger community instead. Finally,
Lee advised that group leaders address any behavior problems that arise within the group by using existing strategies for behavior management in autistic individuals.
Early Childhood Social Skills Groups
How these ideas and suggestions worked out in practice was presented by the following lecturers, beginning with Kay Flinn who discussed the early elementary age social group that she has been working with at Ephesus School. Kay delineated the indicators she used for determining which children were likely to benefit from a group experience at this age. Among them was prior emotional attachment to a peer (whether reciprocated or not), an obvious interest in what other children are doing, and at least basic conversational language skills. She provided us with a description of the children's regular meeting room (which includes an outdoor play area), a sample schedule, and examples of activities that have been successful with this age group.
Prominent display of the schedule for each meeting was an important feature of every one of the social skills groups presented at this workshop. As Jenny Eigenrauch and Nicole Ament pointed out, schedules help to diminish anxiety, support the visually-oriented strengths of the group, and help with transitions from one activity to another. At the younger age levels, leaders reported that they also often displayed posters describing, for instance, emotional states or rules of interaction (take turns, keep your hands to yourself, etc.).
Kay emphasized that at this age, social skills groups are best kept small, with approximately one adult leader for each two or three children. She also pointed out some of the social issues that seemed most difficult for them, namely, taking turns in spontaneous situations, excessive competitiveness, and the difference between laughing "with" and laughing "at."
In the final analysis, though, she reminded us that they are kids, and leaders need to be careful to let them just be kids. For instance, she found (to her surprise) that her group considered belching to be a hilarious activity. The fact that she mentioned this just after she had suggested that snack time was a good time to practice ordering and buying from a "restaurant" counter, may have been purely coincidental!
Older Children's Social Skills Groups
The points that Kay discussed -- the need for schedules and routines, the issue of rules, suggestions for successful activites, and "discoveries made along the way" by leaders -- were repeated in all of the presentations. For Jenny Eigenrauch and Nicole Ament's group of older school-aged children, written schedules and rules were important features of meetings, even for the activities. They found it was best to review the schedule at the beginning of each meeting in order to make group expectations more explicit. In the arena of "rules", they used social stories, role-playing scripts and "webs" (rough schematics with a concept like "how to have a friend" in the center and radiating spokes with ideas on the topic) to good effect, but observed that they also needed to rely on written rules in games like "Go Fish." One of the most popular activities in the group was "Getting to Know You" -- a "check-in" session that became a time of sharing of the
last week's events and an exploration of members' feelings and emotions.
Since the goal of the group was, for the participants, to have fun, Jenny and Nicole emphasized that it was important to incorporate activities reflecting the interests of the group members into the meetings. A measure of their success was found in the fact that the kids hated to go home at the end of the meetings, spoke about looking forward to the next meeting, began to use the ideas and skills they had "studied" in the group in other social situations, and began to seek each other out at recess, at lunch and in other non-meeting arenas. From the point of view of the teachers, these kids became easier to include and work with in cooperative educational sessions in the classroom.
Adolescent Social Skills Groups
By the time people with autism reach adolescence, according to Barbara Bianco's report, the logistics of forming a social skills group for them take on a slightly different complexion. Since group activities at this level are sometimes based in the community rather than taking place primarily in a single location, there are issues of funding and scheduling to consider, not to mention transportation issues and the need for leader reconnaissance of activity locations prior to scheduling an event. Also, at this age the groups tend to start getting larger. Fortunately, also by this age only one leader for each four or five kids is necessary. Finally, when social skills meetings take place in a school classroom (after hours -- though not all do) during the primary school years, regular attendance of all group members can be more or less expected. By adolescence this is not so, and group leaders must be sensitive to the different experience of the group that regular versus sporadic attendees will have.
Despite the differences, some factors in a successful group remain the same. It is necessary to target who will comprise the membership (chronological or developmental criteria?) and determine if there will be requirements for joining, how large the group will be allowed to get, whether non-autistic peer members will be solicited and if so, from where, and how to balance the need of the group with the needs of the individuals within the groups. It is also still necessary to have written behavior guidelines -- kept to a minimum -- for members to refer to and follow (at this age "hints" may be more readily accepted than strict "rules"), and behavior management procedures in place for leaders to use.
As did the earlier presenters, Barbara observed that an "update" period in which members shared events and feelings about their lives since the last meeting was a very popular activity. Perhaps this contributed to the fact that as time went on, the group developed a sense of its own identity, especially for those who got involved and attended fairly regularly. One outgrowth of this was the group decided to do a service project as an expression of their group identity at the Ronald McDonald House in Chapel Hill.
Adult Social Skills Groups
The final presenter was John Thomas, who discussed his observations about the six adult social skills groups in the area. While the basic structure of the idea is the same -- choosing compatible individuals for the group, written schedules, written strategies for group interactions and emphasis on group interests and activities -- there are significant differences when forming social skills groups for adults. The two primary areas of difference are in figuring out what is fun for adults, and in the role of the group convener. Figuring out in advance what may be fun is not as easy for autistic adults as it is for younger age groups. Rather than having a tentative schedule of activities already planned for an adult social skills group, the first group meeting should be one in which participants list their activity preferences, prioritize them, select dates for future meetings, and create a schedule for the season. The role of the convener in long-term planning
for the group illustrates the second difference: Among adults, the group leader's function is first to be a peer, and second to be available to manage (or prevent) situations that might be highly stressful for their autistic compatriots. To the largest possible extent, adult social skills groups should be group-managed.
Surprises
Almost to a person, the presenters commented that in the formative stages of their group they had planned (or contemplated) finding same-age peers to join. In no case were they successful in doing so, but this turned out to be a blessing in disguise since it allowed the group to develop as a group. The popularity of the "update" sessions, which some group leaders had to forcefully restrain lest they take over the entire meeting, are both an indicator of the need and desire that our children have to reach out to others socially, and of their ability to do so -- in their own way -- when given an accepting and appropriately structured situation. The formation of a group identity based on their shared experience (that of autism) has been one of the pleasant surprises of the successful social skills groups.
Questions from participants
One person who attended the workshop also ran a social skills group. She asked when it was appropriate to tell a child that they had autism. Presenters advised that it depended on when the child seemed ready, and that it was not necessarily even necessary to use the word "autism," but instead to describe the effects of autism in that child's life and what the child could do to try to compensate or learn, based on that. The questioner then explained that she had a child in her group who seemed to want to know about it, but the child's parents refuse to use the word or discuss it. I don't recall the gist of the presenters' statements at this point. But it would seem to me that honest answers combined with very careful wording would be appropriate.
I brought up the question of why there weren't social skills coaches just like there are job coaches -- especially for the older people with autism. I used the example of my own son, who is interested in snakes. A social skills coach would work one-on-one with an older autistic individual to make contact with the NC Herpetological Society, secure membership for himself and his charge, go to meetings with the person and help the person engage in the appropriate social activities at those meetings, and perhaps even speak to the members (or just the chair?) about the interests of the person with autism, the condition of autism and his own role as facilitator of that person's group involvement. When the person was well-integrated into the social group -- meaning that his level of participation in the group was satisfying to him, was steady, and that he was generally accepted by the other members, the social skills coach could bow out.
Lee and John said that just this kind of development is anticipated for the future, but that right now the problem is funding. It's easy to legitimate funding for job coaches, since "everyone" knows that it's desirable to have everyone in society acting as a part of the job force. But it's not as easy to legitimate funding (or find it) for social skills coaches, since our dominant social ethos does not recognize this area of life as an equally important one.
I then suggested that, along this same vein and given the reported success of the social skills groups in forging a group identity, a next logical step would be to extend the social learning that has taken place within the group, outside of it. This could be done by having, for instance, a teen-age social skills group help another after-school special-interest group at the junior high or high school with a car wash, or volunteering to work on the homecoming decorating committe or on a joint social service project. The point is to give our kids' group a chance to connect with other groups. It would have the added advantage of "normalizing" our kids and their behavioral peculiarities for the kids in the other groups. (I am assuming, of course, that the other group would be briefed on the nature, characteristics and desires of our kids' group.) One would hope that in the long run this familiarity because of proximity will breed greater acceptance of and
consideration for people witih autism in a variety of social situations. (Not to mention awareness of autism in general -- particularly among the upcoming generation of child-bearers. Early intervention and all that, you know.)
Identified Needs
More groups! Form one!
These workshop notes were taken and processed by Brenda Denzler.
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April 9th, 1999