Long Island Behavior Analysis Conference

The Support of Adolescents and Adults with Autism in the Community – How to Establish Community and Life Skills That Will Endure

The United States is on the verge of a crisis as more than 800,000 children identified with Autism Spectrum Disorders (ASD) enter adulthood. Consequently, there are vastly larger numbers of adolescents and adults who need interventions and services than ever before. Unfortunately, the need continues to far exceed the available resources, leaving a generation of people with autism and their families in a programmatic, financial and personal limbo, and society-at-large economically diminished. Notwithstanding the recognized impending tsunami of individuals who will shortly enter adult service systems, the bulk of services currently available to support individuals with autism serve ages 0-21 (Gerhardt, 2009). Recently, Autism Speaks announced preliminary results of new research that estimates the costs of autism to society at a staggering $126 billion per year – a number that has tripled since 2006. The costs of providing care for each person with autism affected by intellectual disability through his or her lifespan is approximately $2.3 million. In light of the dearth of services and increasing costs, we should establish reliance on natural supports and build community and life skills that will endure so that individuals with ASD can navigate society productively and without complete dependence on service systems.

The community is composed of a diversity of preferences, philosophies, activities, and cultures, all of which operate according to different expectations or “organizational cultures.” For adolescents to learn and maintain requisite skills, education and training must be provided in the community as soon as possible. Specifically, education should take place in community environments where the student is likely to frequent and utilize as an adult (nuclear environment). Early and intense community immersion will ensure that the student has opportunities sufficient to develop and refine abilities to navigate and socialize in the community (Wehman & Thomas, 2006). Notwithstanding the research indicating that individuals with autism learn best in an environment in which the behavior is most likely to be displayed (Natural Environment Training; Koegel & Frea, 1993), or the seemingly common sense nature of the positive impacts of community immersion, full community integration is not yet a reality for many adolescents and young adults with ASD. This is especially true given that most individuals with ASD have not achieved effective social integration (Howlin, 2000; Orsmond, Krauss, & Seltzer, 2004).

Although attempts are made to develop sustainable and generalizable skills that will be useful for successful community life prior to leaving public school systems, positive outcomes have not been noted. In the fields of education and training, the term “generalization” refers to displaying the knowledge or skill – learned in a teaching or training situation – in contexts where that knowledge or skill was not initially taught (Stokes & Baer, 1977). In other words, generalization occurs when a learned skill “transfers” to novel environments or contexts. Some examples of generalized skills include paying for a meal at a restaurant (after learning money skills in school), dressing to go to work (after learning how to put on and take off clothes at school), and responding to greetings at the mall (after learning to greet and respond to greetings at school). When learned knowledge or skill does not generalize, performance of a previously acquired skill fails in a novel environment. For example, an individual fails to cross a neighborhood street safely after practicing it correctly in school, fails to use a telephone at home when learning to do so at school, and cannot use a credit card in a store after practicing it successfully in a vocational training center.

In education and training, the generalization of behavior is not only important, but is actually the fundamental goal to which all educators strive to achieve with every student (Cooper, Heron, & Heward, 2007). Stokes and Baer (1977) in their seminal paper on this topic, defined “generalization” as: “the occurrence of relevant behavior under different, non-training conditions (i.e., across subjects, settings, people, behaviors, and/or time) without the scheduling of the same events in those conditions. Thus, generalization may be claimed when no extra-training manipulations are needed for extra-training changes; or may be claimed when some extra manipulations are necessary, but their cost is clearly less than that of the direct intervention. Generalization will not be claimed when similar events are necessary for similar effects across conditions” (p. 350).

Generalization can be particularly challenging for individuals with ASD, and, therefore, becomes an important issue. Research shows that persons with developmental disabilities fail to automatically transfer skills learned in training contexts to untrained contexts more so than learners with typical intelligence and no disabilities. And without this generalization, skills learned before entering community environments are not likely to be used in those environments. We need to train community skills in a way that will naturally be used by these individuals.

The most effective supports that can be offered for adolescents and adults with ASD who need to survive in a variety of community settings is to train community skills in a way that will lead to natural and automatic generalization of these skills. The model explained here describes an efficient facilitation of generalization and focuses on four fundamental points: (1) training is done in the community settings where the individual will be living and working (nuclear environments), (2) the targeting of skills that will be naturally maintained in community contexts (NET), (3) the use of teaching strategies that best “fit” community environments (organizational cultures) , and (4) the intervention on behavioral issues while in community activities (establishing priorities).

 

  1. Training is Done in the Community Settings, Not in a Separate School-Like Context

 

All training is done in the natural environment, where the individuals live, work, and play. The school building can be likened to an airline hub, students and teachers coming in and out as necessary for fluency based instruction or instruction in functional academics, but mainly is used at the beginning and end of the day simply for bus pickup and drop-off, and a place for staff meetings. Otherwise, all substantive training occurs out in the “real world,” at office buildings, hospitals, hotels, fitness centers, grocery stores, movie theaters, and any other community place. Understanding the importance of generalization of skill development, the philosophy of this model is to train where the skill will be used, so that the issue of generalization is less challenging and ultimately moot and irrelevant.

 

  1. Skills Targeted for Training Must Be Naturally Reinforced and Supported by The Environment

 

The staff, students, and their parents/guardians work together to select meaningful goals and objectives for training. These encompass work, leisure, and community areas. Since all training occurs in the natural environments where the students live, the skills targeted will more likely to be naturally reinforced and maintained. For example, work objectives are selected based upon the importance of those objectives in accomplishing “real world” job requirements. These objectives will be naturally maintained by either reinforcement (for mastering the work objectives) or through correction (by fellow employees or supervisors). Either way, the student’s work performance, once learned through the training protocols, will be maintained due to its relevance to real-world work for that particular work context.

Another example is the acquisition of leisure skills. A favorite activity of society-at-large today is developing healthy lifestyles including physical activities at a local fitness center. Consequently, most students learn workout routines at a local public fitness center. The students target the acquisition of the use of specific workout equipment (e.g., treadmill), smooth transitions among workout activities, and locker room routines. The public who attend the fitness center naturally maintains both sets of skills. Appropriate use of the equipment is reinforced through social acceptance, and inappropriate use is consequated through staff and member critical feedback. Appropriate locker-room routines (e.g., showering, shaving, dressing) are naturally maintained by those environments through the same mechanisms. Thus, all of the goals and objectives, when taught in the environments in which they will be used, inherently possess this quality of maintenance by the natural community of consequences.

 

  1. The Development of Training Protocols That Are “Environment-Friendly”

 

The teaching programs used to establish these community skills are fundamentally behavior analytic in nature. We commit to the technology of education and training as derived from the science of applied behavior analysis. Community based training protocols are no different in that respect from other good quality instructional programs. However, the development of the teaching protocols is different in the sense that they must conform to, be sensitive to, and respect the environments in which the training will take place. Training cannot always be done in the same manner as a school environment. For example:

 

Training Materials: The training materials brought into the community environments are physically smaller. Instead of massive ‘program books,’ crammed with data, we use much smaller materials, and fewer of them. Data books are approximately 5 x 7 inches making them easy to carry and, most importantly, less conspicuous to the public. With increased technological capabilities, training programs and data collection can all take place on a mobile device, such as a tablet computer.

 

Reinforcement: The use of naturally occurring reinforcing consequences is used more than in a non-trained environment such as a school. For example, when completing a work routine of preparing food in a kitchen, the naturally occurring result could be the consumption of soda or small food item, which naturally follows many of the work routines in a kitchen.

 

Prompting Hierarchies: Verbal prompts are generally discouraged unless the action verbally prompted is a verbal response, however, in community based instruction it is noted that society-at-large operates on verbal prompts. Physical prompting, recognized as easier to fade than verbal prompts, is not socially accepted. For skill acquisition programs (e.g., job tasks, shopping, etc.), nonverbal prompts, such as gestures, models, and physical guidance, are used only where not stigmatizing. In the community, the use of physical prompts may create more of a negative stigma than verbal support. Here, the use of technology can assist in prompt and prompt fading through the use of Bluetooth (to deliver and fade verbal prompting) and iPads and iPods (e.g., video modeling for physical demonstrations).

 

  1. The Intervention on Behavior Problems In Community Settings

 

Students begin going into the community immediately upon entering the program. There are no criteria for an absence of maladaptive behaviors before entering job and other community sites. The philosophy that influences our program remains consistent – the best places to learn are in the natural communities where the behaviors will be expected to occur once acquired. In the traditional training environment, behaviors are targeted for improvement in the school or center context, and once improved, the individual then enters community locations, with the hope that the improved behavior generalizes. However, as noted earlier, generalization is not likely to happen. So, students who engage in various problem behaviors – such as stereotypy, obsessive-compulsive behaviors, shouting, and others – continue to do their training programs and go where they are scheduled to go. By the time of the age of adolescents or adulthood, behavior patterns are entrenched with long histories. Therefore, behavior reduction programs should be prioritized and implemented only where behavior impedes skill acquisition, job performance (fluency) or results in ostracizing stigma.

 

Machalicek, O’Reilly, Beretvas, Sigafoos, & Lancioni (2007) reviewed interventions for use in reducing challenging behaviors and found that most treatments involve the imposition of strategies external to the curriculum or activities in which the individual is engaged. Examples of such strategies include social stories, video modeling, and token reinforcement. When working in community settings, overreliance on these types of interventions are cumbersome to implement and could likely increase stigma towards the individual with ASD. In contrast, our approach to behavior management primarily emphasizes overall motivational variables inherent in the individuals’ daily activities. One general strategy is to match, as much as possible, student interests with student activities. Incorporating student interest into the activities has been shown to reduce behavior problems and increase participation and compliance (e.g., Hinton & Kern, 1999; Koegel, Singh, & Koegel, 2010). Consider exercising at a workout facility as an example. First, preferences from the student are solicited regarding the type of exercise equipment and routines in which to engage. Using an exercise machine that the student has chosen increases the student’s control over his own environment and a sense of confidence, thereby increasing a positive experience and decreasing likelihood of problematic behavior. Another strategy is to ensure that the activities result in naturally occurring reinforcement. Research has indicated that activities that result in reinforcement that naturally occur for that activity can result in decreased behavior problems and improved performance (e.g., Kern, Childs, Dunlap, Clarke, & Falk, 1994). An example of how this is implemented in our program relates to a community job at a country club, at which the student works in the dining room. His job routine consists of filling drink stations with crushed ice. After the entire task is completed, the student has the opportunity to get a drink of soda, a natural consequence for this particular activity.

Differential Reinforcement of Other Behaviors (DRO) reinforcement programs that are external to curriculum and student activities are also implemented, however, the schedule of reinforcement is thinned rapidly so that most students are scheduled to receive reinforcement once every hour or longer. This thin schedule reduces the necessity of frequent implementation of potentially stigmatizing external reinforcement procedures, and overreliance on artificial plans. As with any good behavior analytic program, data are taken daily on occurrences of targeted behaviors.

For those students who engage in behaviors that could be physically dangerous to themselves or others, access to community environments takes a slower and more gradual schedule and is shaped to increasingly longer periods of exposure. Frequency and duration data drives rates of increased immersion into community settings. Working on behavior issues in the community is beneficial in at least two ways. First, these students are integrated into their communities faster than in traditional educational settings in which there may be a criterion (for sustained days of appropriate behavior) before returning to the natural community. Second, natural consequences for engaging in inappropriate behavior often occur, helping to reduce or eliminate the behavior. For example, one student with a very strong interest in women’s shoes often talked about them to female staff in the office building where he worked. These female workers quickly learned to reprimand him for such questions and comments, and the student engaged less often in that behavioral pattern around those women.

 

Conclusion

 

An entire generation of our nation’s most vulnerable citizens is about to leave the entitlement- based world of special education and enter the already overwhelmed and under-funded world of non-entitlement adult services. While exceptional adult programs and services exist in every state, they tend to be more the exception than the rule, leaving many individuals and their families to fend for themselves. This is completely unacceptable (Gerhardt, 2009).

Adults with ASD deserve the same opportunities and options that those of us not on the spectrum, more often than not, take for granted. This would include the opportunity for a real job, a home in the community, people in their life for whom they care and who, in turn, care for them, to be free from abuse and neglect, to have access to healthcare, leisure and, if desired, a community of faith, and to be treated with dignity and respect. Our greatest possibility of achieving these goals is to encourage a shift in the current traditional educational paradigm away from the four corners of the classroom and protections of school buildings and toward total immediate and intensive immersion into nuclear real world environments. Properly cultivated, community members become invested partners in the educational process and develop into natural supports, replacing 1:1 assistance of paraprofessionals. Reinforcement becomes intrinsic and tied to naturally occurring consequences. Direct training of vocational tasks, leisure activities, and life skills in the contexts where those skills will be used will obviate the concern for generalization of skills from training to non-training environments, which the training literature has regularly shown to be of a concern. The learning of new skills will take place more quickly when the training is done in the natural settings, leading to naturally occurring reinforcers. Maladaptive behaviors are likely to be reduced more quickly when intervention takes place in the community environments where the behavior is likely to be displayed.

The community is the future to a quality of life for individuals with autism and an untapped educational resource for maximizing access to personal reinforcement and satisfaction, enhancing the quality of life and personal well-being. We would be wise to take advantage of these vast resources just outside of our schools’ doors.

 

Thomas L. Zane, PhD, BCBA-D, is a Professor of Education and Director of the Applied Behavior Analysis Online Program at the Van Loan Graduate School of Endicott College and serves on the professional advisory panel for Preparing Adolescents and Adults for Life (PAAL). You can contact Dr. Zane at tzane@endicott.edu. Gloria M. Satriale, Esq, BCAB, is Executive Director of PAAL. Peter F. Gerhardt, EdD, is the Director of Education at the Upper School for the McCarton School in New York City and is on the professional advisory panel for PAAL.

 

References

 

Cooper, J. O, Heron, T. E., & Heward, W. L. (2007). Applied Behavior Analysis. 2nd Edition. Upper Saddle River, NJ: Pearson/Merrill Prentice Hall

 

Gerhardt, P. F. (2009). The current state of services for adults with autism. Retrieved June 7, 2012 at http://www.mo-feat.org/files/oar_survey_11309.pdf

 

Hinton, L., & Kern, L. (1999). Increasing homework completion by incorporating student interests. Journal of Positive Behavior Interventions, 1(4), 231–241.

 

Howlin, P. (2000). Outcome in Adult Life for more Able Individuals with Autism or Asperger Syndrome Autism March 2000 4: 63-83.

 

Kern, L., Childs, K., Dunlap, G., Clarke, S., & Falk, G. (1994). Using assessment-based curricular intervention to improve the class- room behavior of a student with emotional and behavioral challenges. Journal of Applied Behavior Analysis, 27, 7–19.

 

Koegel, R. L., & Frea, W. D. (1993). Treatment of social behavior in autism through the modification of pivotal social skills. Journal of Applied Behavior Analysis, 26, 369-377.

 

Koegel, L. K., Singh, A. K., & Koegel, R. L. (2010). Improving motivation for academics in children with autism. Journal of Autism and Developmental Disorders, DOI 10.1007/s10803-010-0962-6.

 

Machalicek, W., O’Reilly, M. F., Beretvas, M., Sigafoos, J., & Lancioni, G. E. (2007). A review of interventions to reduce challenging behavior in school settings for students with autism spectrum disorders. Research in Autism Spectrum Disorders, 1, 229–246.

 

Orsmond, G., I., Krauss, M. W., & Seltzer, M. M. (2004). Peer relationships and social and recreational activities among adolescents and adults with autism. Journal of Autism and Developmental Disabilities, 34(3), 245-256.

 

Stokes, T. F., & Baer, D. M. (1977). An implicit technology of generalization. Journal of Applied Behavior Analysis, 10, 349-367.

 

Wehman, P., & Thomas, C. (2006). Teaching for transition. In P. Wehman (Ed.), Life beyond the classroom: transition strategies for young people with disabilities, (4th edition, pp. 201-236). Baltimore: Paul Brookes Publishing Co.

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