Adults with autism: habilitation challenges and practices.

Historically, the needs of those with autism have been ignored as they grew beyond childhood into adolescence and adulthood. Institutionalization was the rule in the early decades of this century with little hope offered to individuals with autism. They were kept behind locked doors in state hospitals which purported to serve mental illness and retardation (Karst, 1991). Those with autism often went unidentified, untreated or underserved due to such factors as limited resources, inadequate staff, and lack of effective treatment methods.

In contrast, current laws and better understanding of the disorder have opened the way for educational, social and vocational services that address the life span development of this population (Schopler & Mesibov, 1983; Vogel, 1988; Dawson, 1989; Schopler & Hennike, 1990; Smith, 1990; Van Bourgondien, 1990; Demeestere & Van Buggenhout, 1992; European Parliament Report, 1992). As custodial institutions have been closed, and hospital beds emptied, responsibility for "care," "treatment" and "asylum" has shifted to the community at large. There are several examples in the United States and Europe, in which courageous, creative efforts of parents and special teachers (Giddan & Giddan, 1991; Giddan & Giddan, 1993) have helped autistic individuals thrive and develop into contributing members of society.

Bittersweet Farms, established in 1975, is one such community setting developed to fill this service void. It is a farmstead, actually the first such project of it's kind in the United States, created in the image of Somerset Court in England (Elgar, 1991). Both were responses to the critical needs of adults with autism. The founding directors, Sybil Elgar at Somerset and Betty Ruth Kay at Bittersweet, were energetic pioneers with skills in teaching, rallying public support and leading others into uncharted territory. Both programs continue to operate successfully today, while serving as models for a new generation of American and European farm communities (Giddan & Giddan, 1993).

The Farmstead Setting

Bittersweet Farms is a residential and vocational setting for adults with autism. Residents live in a fifteen-bed dwelling, and a five-bed co-op home on the eighty acre farmstead. Vocational and educational services are offered to day students as well. Programming at Bittersweet Farms is comprehensive; self-care, activities of daily living (ADL), and the behavioral, social, communicative and vocational needs of each individual are addressed through a carefully designed and individualized program plan (IPP, United States Government Printing Office, 1988). The farmstead offers work in areas of horticulture, greenhouse management, woodworking, animal care, landscaping and home-making. Those with autism work along with staff at tasks relevant to the care and maintenance of the homes and the farm. There is a ratio of 1 staff person for every 2 to 3 program participants.

For adults with autism who had no viable vocational skills prior to Bittersweet, new possibilities emerge, not rehabilitation in the usual sense. Rather, in this context it is habilitation of integrated personal, social and vocational skills that are targeted.

This paper is a descriptive view of the program practices at Bittersweet Farms, empirically based on interviews with staff. It illustrates objective lessons based on data collection and analysis, as well as more subjective lessons gleaned from personal involvement and observation during twelve years of living and working with the farm participants. It will focus on the characteristics of autism in adulthood, symptoms that interfere with optimal functioning and techniques useful for habilitation training programs.

Challenges to Habilitation in Autism

Autism is a neurologically based pervasive developmental disorder that effects many aspects of functioning. Diagnostic features described in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV, APA, 1994) include qualitative impairment in social interaction; absent, delayed or idiosyncratic use of language; and stereotyped, repetitive patterns of behaviors, interests, and activities. Although adults with autism can continue to learn new skills, many of their behaviors sorely challenge most habilitation efforts. If progress is expected, staff at sheltered workshops, group homes, farmsteads and public settings must familiarize themselves with those features of autism which interfere with teaching and learning. We will highlight six areas of challenging behaviors here.

Abstract concepts usually elude these adults (Mesibov, 1983). Their concrete perceptions and overly-specific and rigid beliefs (Rumsey, Rapoport Sceery, 1985) can lead to misunderstandings and serious errors even in those with productive verbal expression. Staff members need to be almost "self-consciously" aware of what they say and how they are phrasing it, for without clear, specific verbal and written instructions, ambiguities can lead to confusion.

Concepts of time, distance, relative size, temperature and feelings can all be perplexing. One young man visited Bittersweet Farms while the co-op house was under construction. When told he would be living in that dwelling, he became anxious and worded. He was unable to sense there would be progress over future time, so he believed the building would remain in that deconstructed state and could see no place to put his bed.

Judgment requires attention to a wide range of situational cues, knowledge of concrete and abstract concepts (Lord & O'Neill, 1983) as well as understanding of cause and effect. Autistic adults in a living and working environment are faced with situations that require multiple judgments each day as can be seen in routine cooking and dressing tasks.

Nothing is written in traditional cooking or baking recipes to describe the size or shape of the "pot" or "pan" required and most with autism will not be able to decide on their own which receptacle would work best. They also have difficulty matching appropriate clothing to weather conditions and might fold clothing from the drier in spite of the fact that it is still quite damp. Further, they have problems anticipating the impact of their actions. In baking a cake, a young woman literally obeyed the direction, "turn in microwave after five minutes". She could not foresee the unfortunate consequences of "turning" the cake face down.

A common problem for adults with autism is dealing with change, especially with regard to routines, time schedules, people associated with certain events in the day or location of activities. A sense of sameness seems to be calming while unexpected alterations often increase anxiety and agitation. Those with autism may often become visibly upset if furniture is rearranged, or if a staff person is not on duty at the usual time. Even shifts of season cause stress. One young man enjoyed swimming every summer day after lunch. When fall came and the weather cooled, he continued to change into his swim trunks after lunch, even when it was raining or chilly outside.

Lack of initiative is common in autism, at the work place as well as in routines of daily activities. Individuals may have the needed skills but not always apply them. In the work setting at Bittersweet Farms this was demonstrated clearly by the young men assigned to the horticulture program. Initially, they would arrive at the site and then sit and wait, dependent on the staff to tell them what to do. They needed to be moved toward greater independence but they were not able to direct themselves.

Lack of initiative becomes a serious problem in the area of self care for those who have "learned" what to do, but who don't "perform" appropriately. A case in point is a high functioning young women who worked competently repairing small machines. Although she had learned all skills necessary for personal grooming, and could described them if asked, she would walk into lunch each day with dirty, greasy hands, never initiating washing on her own.

Perseverative behaviors and compulsive rituals seen in this population (Cesaroni & Garber, 1991; Rumsey, et. al., 1985) are frequent obstacles to teaching and learning (Wing, 1989; McBride & Panksepp, 1994). These repetitive behaviors can be expressed in a variety of ways through motor acts, vocalizations or obsessional thoughts. Some individuals make sounds out loud; the same sound over and over. At times, compulsive rituals are seen, such as stuffing the toilet with paper, or pacing back and forth along the same path each day. One young man needs to always exit the door he has entered and will even climb over barriers to accomplish that. Another must make sure all toilet seats are down in the upstairs bathrooms even through the night.

Social interaction is difficult, as adults with autism have difficulty making eye contact and understanding the nuances of social discourse. Linguistic and pragmatic features that define the disorder (Baltaxe & Simmons, 1987) include lack of knowledge about how to engage in conversation, how close to stand to others, when to take a conversational turn, how to initiate a topic, or how to take another person's point of view (Frith, 1989). Reading social cues embedded in body language, facial expression, and vocal inflection is also a problem, as is the apparent lack of empathy for another's feelings (Baltaxe & Simmons, 1987).

In many habilitation programs, social interactions are expected, but those with autism don't know how to engage with others or what their role might be (Wing, 1989). A young man with autism, working in sheltered community employment, was included in a dance for all the program participants. Among those with primary mental retardation, he stood out as being disconnected and uninvolved within that social context, as he stood off by himself the entire evening.

Strategies for Habilitation in Autism

The following habilitation strategies used at Bittersweet Farms have frequently proven effective in addressing the challenges discussed above. These practical approaches are based on principles of structure, order, consistency and predictability (Kay, 1991).

1. Environmental Organization

The environment needs to be clearly defined and highly organized (Van Bourgondien & Mesibov, 1989; Mesibov, Schopler & Hearsey, 1994). This applies to the physical setting, roles of personnel and program format. Physical space must accommodate specific daily tasks and activities and allow enough room for each person to function and feel comfortable. Personnel maintaining similar roles from day to day can get to know habits and preferences of each worker and adapt effective modes of responses to them. Program format must be clear to all involved, so moments of indecision, ambiguity and confusion are minimized or actually avoided. Daily schedules should have predictability over time and be clearly communicated in a format that participants can process, be it verbal, written or pictured (Smith, 1990; Mesibov, et. al., 1994).

The order of events is important. Activities and tasks need to be logically sequenced in finely graded steps to be understood and carried out by these adults. Over time, if alterations need to be made in the established order, they should be made very gradually. Consistency of basic elements of routines from day to day and week to week provides predictability for these individuals who are otherwise easily unsettled by unexpected change.

2. Meaningful Activities

In order to sustain attention and involvement, and promote understanding of sequences of events, activities are best presented in meaningful contexts (Lettick, 1983; Kay, 1991), and the impact of the work should be seen at some point. In the horticulture setting (Collins & LeFevre, 1991) adults with autism plant seeds, watch them grow, weed the gardens, harvest the vegetables and then cook and eat the food. Stages of this process are observable, concrete and fully experienced by each person.

In other projects, wood is cut to burn in the stove to keep warm; chairs are built to sit in. These outcomes are visible and an integral part of real-life activities.

3. Structured Programming

Program activities are guided by carefully planned schedules that are presented with strong visual cues (Mesibov, et. al., 1994). For those who can read, there are written lists; for those who cannot, there are sequences of pictures depicting the order of events (Giddan & Giddan, 1984; Schopler & Mesibov, 1983). Such visualized cues guide events and are used to structure each and every task. To reduce abstraction, instructions are presented in the most basic terms possible and specific steps are indicated in the finest detail. For the young woman who "turned" the cake over in the microwave, instructions might be written as "rotate the cake pan to the left." Such specificity overcomes the challenges of abstraction and helps avoid errors.

To clarify implied meanings, directions might specifically say "sit down," "turn the page," "remember to turn off the oven" or "go tell your supervisor you are finished."

When judgment is a problem in movement toward independence, circumventing the responsibility for making important decisions is often the best remedy. In meal preparation, instructions like, "use the large green pot" can prevent the pouring of a large quantity of food into a small container. With regard to monitoring the drying of clothes, prescriptive directions to prevent error can be "dry your clothes for thirty minutes."

In handling change, provision of ample warning often helps to alleviate anxiety that comes with disruption of schedules. These, written or pictured, allow for advanced notice and serve as a reminder of what is coming that will be different. For a young man who has difficulty with changes in work routines, the item on his schedule, "choose a new job from the job jar" allows him to independently and easily alter his day.

When an entire repertoire of behaviors has to be altered, a more gradual fading program can be put into place as can be seen in the program for the young man who had difficulty relinquishing the after lunch swim. At first when he removed his clothes he was allowed to put on his swim trunks and go out to the pool to wet just his legs. He wet less and less each day until he was only touching the water. Eventually the ritual was reduced to just changing his clothes. Finally, he accepted going to another activity after lunch.

To overcome apparent lack of initiative, task lists are developed to cue the men at the horticulture center. Upon arrival they pick up their clipboards, read the attached schedule and directions, and carry out their tasks. As they no longer wait to be told what to do, their on-task time and productivity are improved.

When initiating self-care practices is a concern, the strategy of posting lists of self-care routines in bedrooms is effective. As these adults follow their printed or pictured directions week after week, they eventually master the sequence and repeat the practices as new habits or rituals.

4. Managing Repetitive Behaviors

A variety of strategies have been shown over time to be useful in dealing with the interfering, perseverative behaviors seen in this group (Schopler, 1995). Counselors and teachers can choose to ignore, replace, divert or prevent such behaviors. They can let them run their course or they can skillfully manage them.

Activities that fully involve, absorb, occupy and satisfy each person work best for maintaining attention and reducing repetitive behaviors. Unstructured free time is the most difficult experience for these individuals to manage; it is then that perseverative and compulsive behaviors are likely to appear.

Ignoring repetitive behaviors is useful when these behaviors have no negative impact upon others or the environment. This worked well for one young man who frequently and repeatedly lunged forward, pointing his hand very close to others' faces. With ignoring, over time, this behavior totally disappeared.

Replacing the undesirable behavior with a more acceptable activity with similar characteristics often works. A man who repeatedly told unacceptable jokes and made unpleasant comments to the staff, was taught more appropriate, clean jokes. Staff members would then ask him for his "joke of the week" and would react energetically with attention and laughter. Gradually the inappropriate jokes faded out.

To divert and redirect perseverative responses, staff try to incorporate similar motor movements into constructive and useful purposes (Schopler, 1995). For the young man who paces back and forth, pushing a lawn mower back and forth across the yard can be both satisfying and productive. For the woman who likes to pick at small imperfections in wallpaper or floor tiles, weeding flower beds is a practical option. For the person who randomly flails his arms, cleaning windows is an acceptable choice. A young woman who ritualistically makes lists while she is by herself, can be diverted to making lists that are useful to herself and the community, like grocery lists and lists of plants to be ordered from the horticulture catalog.

Response prevention is the goal when repetitive behaviors are damaging or costly to the community. One young woman compulsively wiped all bathroom surfaces dry, then stuffed the toilets with paper until she could see no more water there. This proved costly with regard to paper products and plumbing. The only way to prevent this behavior was to have a staff member present in the bathroom. When somebody was with her she used the bathroom without engaging in her compulsions.

Some behaviors like pacing or rocking are hard to extinguish entirely. They can be managed, however by providing a structured time for their expression. For a young man who perseverated in pacing back and forth every few minutes during his work, a schedule was created wherein ten minutes of his on task behavior was followed by a break of five minutes of free time for him to do his pacing. Gradually, time on task was increased, and free time was diminished.

Sometimes it is just dangerous to interrupt ritualistic or self stimulating behaviors once they have been initiated, because violent responses might be triggered. In these cases it may be best to let the behavior run its course as long as it is not harmful, and when the individual has stopped on his own, to lead him back to the on-going activity.

The choice of the strategy used to address any perseverative behavior is dictated by a thorough understanding of each person and tempered by the nature and disruptiveness of the activity. The resident's sense of security, and the safety of both resident and staff must always be major considerations.

5. Enhanced Interaction

To overcome social isolation, typical of adults with autism, a range of interactive activities can be encouraged. Caregivers should select those options that best fit the cognitive, linguistic and interactive features of each resident. These can begin with nonverbal reciprocal activities which might include delivering notes from one person to another, retrieving the mail from the mail box and bringing it to the office, turn-taking in contexts of simple games, or distributing items to an assembled group, such as passing out napkins or drinks at snack time.

Meaningful physical and social interactions can be structured into tasks to enhance sharing and interdependence (Kay, 1991). Use of a two-person saw, carrying two ends of a heavy load, pushing and pulling a wheelbarrow are examples of structured reciprocity. These interactions between staff and workers, and eventually between peers provide the experience of sharing.

In the peer model, as staff and adults with autism work together to complete assigned tasks, socialization is inherent in their joint efforts, however, verbal interaction is more difficult to achieve. Adults with autism are not likely to talk to each other, although they will respond when others speak to them. To encourage verbal exchanges, simple games are useful such as "Red Rover, Red Rover" where naming another person propels the game forward. Table games that require talking, like Uno and Bingo, are available. For those who can read, scripts can be devised to cue verbal expression in specific social situations, from everyday greetings to encounters at stores and restaurants in the community. Once familiar with the scripts, individuals with autism may then remember what to say without the written cue.

Summary

These foregoing examples illustrate the complicated nature of behaviors associated with autism in adulthood, and demonstrate how daily challenges need to be matched with strategies that are humane, systematic and effective. It is incumbent upon staff working with this population to understand and appreciate the many distinctive features of the autistic disorder as they choose techniques synchronous with the habits, preferences and idiosyncrasies of each individual they serve.

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Jane J. Giddan, M.A. CCC-SLP, Associate Professor of Clinical Psychiatry, Department of Psychiatry, Medical College of Ohio, P.O. Box 10008, Toledo, Ohio 43699-0008.