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 interactions; 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 worried. 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 & OêNeil, 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 directions, "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 donêt "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 describe 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 & Pankseep, 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 personês 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 anotherês feelings (Baltaxe & Simmons, 1987).

In many habilitation programs, social interactions are expected, but those with autism donêt 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.

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