Points of Interest:
• Entering puberty involves a number of physical, medical, and emotional issues that must be addressed so that the ASD adolescent is able to learn the life skills necessary to transition to adulthood.
• Achieving life skills necessary to enhance independence and quality of life requires targeted interventions for the individual with an ASD in the areas of communication, social behavior, and daily living.
• The few follow-up studies addressing the symptom impairment and abatement in adolescents and adults with an ASD suggest that these individuals can make improvements from childhood to adulthood; however, some experience periods of symptom aggravation and a majority continue to require support services.
• To learn necessary life skills, individuals with an ASD need to be able to attend and focus rather than be distracted by medical or psychiatric issues; therefore, an assessment of the underlying issues or ASD-specific deficits that cause or are driving the behavioral presentation is necessary.
• An understanding of the unique learning characteristics and behaviors of individuals with an ASD can enhance the implementation of interventions to improve their level of functioning in society.
Adolescence brings unique challenges to individuals with an autism spectrum disorder (ASD), regardless of his or her level of intellectual ability or the amount and type of early interventions and school-age support services employed. The very fact that the child is now older, larger, and almost physically mature puts him or her at risk for being misunderstood and vulnerable in his or her community. Those unfamiliar with the complexities of autism may have difficulty understanding or ignoring the odd or seemingly rude behaviors of the mature-looking individual with an ASD. Caregivers are also less able to avoid addressing the socially immature behaviors and demands of their adult-sized child with an ASD. Such behaviors may have been tolerated when the individual with an ASD was a young child, but they bring a whole host of problems when the child enters adolescence. Heightened community expectations for increased cognitive, psychological, and social maturity also create challenges for these ASD adolescents. Additionally, entering puberty involves a number of physical, medical, and emotional issues that must be addressed so that the ASD adolescent is able to learn the life skills necessary to transition to adulthood.
Although there are many books related to teaching life skills to individuals with ASDs (see Suggested Readings), such teaching can be overwhelming because it is difficult to synthesize this information to address all the unique needs of a given individual with an ASD. Along with this, intervention strategies need to be adjusted to address the developmental strengths and needs of each child as they enter adolescence and continue on to adulthood. This chapter attempts to address this problem by providing a framework for understanding the unique obstacles to helping adolescents with ASDs acquire the life skills needed to enhance their independence and quality of life. The first section of this chapter reviews the current literature regarding the life-course of symptom impairment and abatement that adolescents and adults with ASDs continue to face. Such issues include communication and social abilities, behavior challenges, daily living skills, and adaptation to community living/vocational environments. The second section provides a suggested method for approaching life skill instruction with adolescents diagnosed with ASDs by assessing underlying problems, recognizing the unique ASD learning styles, teaching survival life skills, providing case examples, and addressing issues related to transitioning to residential and vocational settings.
Life Skills Development for Individuals With Autism Spectrum Disorders
The World Health Organization (WHO, 1999; WHO, 2004) has defined life skills as adaptive and positive behaviors necessary for an individual to deal with the demands of life. Life skills involve problem-solving, decision-making, goal-setting, critical thinking, communication, assertiveness self-awareness, interpersonal skills, and an ability to cope with stress. These are psycho-social and reflective life skills that are particularly difficult for individuals with ASDs because of their qualitative impairments in three core areas: social, communication, and repetitive and stereotyped behaviors and interests (American Psychiatric Association, 2000).
To achieve life skills, the individual with ASD needs to develop specific adaptive living skills (e.g., communication, social behavior, and daily living) necessary to integrate into society. Klin et al. (2007) assert that a “critical indicator of an individual’s progress is his or her ability to translate cognitive potential into real-life skills” (i.e., adaptive behaviors) (p. 748). Of concern is the unique and consistent finding that ASD individuals tend to have much lower adaptive functioning abilities compared to their levels of intelligence and that adaptive abilities appear to either level off or decrease as these individuals age (Lockyer & Rutter, 1969; Rumsey et al., 1985; Freeman et al., 1991; Bryson & Smith, 1998; Carter et al., 1998; Bolic & Pousika, 2002; Volkmar, 2003). Having speech by age 5 years and higher childhood intelligence tends to predict a lesser degree of impairment later in life for ASD individuals (e.g., Howlin, 2003; Billstedt et al., 2007; Shattuck et al., 2007). However, these higher functioning individuals can still be handicapped by their inappropriate or odd social behaviors and limited self-care skills (e.g., Ballaban-Gil et al., 1996; Howlin et al., 2004; Gabriels et al., 2007; Klin et al., 2007; Saulnier & Klin, 2007).
A major challenge to life skills intervention and planning for individuals with ASDs is the heterogeneity of symptom impairment across individuals. Individuals with ASDs display variability in the range and severity of the core ASD diagnostic symptoms in the areas of social communication and behavior. For example, some ASD individuals may have limited to no expressive language ability; whereas, others may have a large expressive vocabulary, but have difficulty engaging in reciprocal social conversations. Individuals with ASDs can also differ widely in their social and behavioral presentation from being socially interested but odd in their social interactions with others to engaging exclusively in their restricted interests or odd repetitive behaviors. Individuals with ASDs also display a variety of associated symptom deficits in intelligence and adaptive ability levels, sensory sensitivities, and comorbid medical and psychiatric diagnoses (e.g., Mottron & Burack, 2001; Bolte & Poustka, 2002; Tuchman & Rapin, 2002; Gabriels et al., 2005; Leekam et al., 2006; Leyfer et al., 2006; Klin et al., 2007).
Life Skill Outcomes in Adolescents and Adults With Autism Spectrum Disorders
There have been a limited number of prospective follow-up studies of adolescents and adults with ASDs to assess how children with ASDs function as they enter adolescence and adulthood (Shattuck et al., 2007). The few studies addressing the symptom impairment and abatement in adolescents and adults with ASDs suggest that these individuals can make improvements from childhood to adulthood; however, some experience periods of symptom aggravation. The majority of individuals with ASDs remain significantly impaired and continue to require support services (e.g., Gillberg & Steffenburg 1987; Shattuck et al., 2007; Cederlund et al., 2008; see also Seltzer et al., 2004, for a research review). The following section reviews the prospective, retrospective, and cross-sectional studies of adolescents and adults with ASDs. Outcomes in the areas of communication, social, behavior, and daily living skills along with community living and vocational environments will be reviewed.
Studies indicate that individuals with ASDs do make improvements in their ability to communicate during adolescence and adulthood; nonetheless, problems remain for ASD individuals with or without speech (see Seltzer et al., 2004 for a review). These communication problems involve reciprocal verbal communication and nonverbal communication impairments. For example, in a prospective follow-up study of 105 adolescents and young adults with ASDs and a range of intellectual ability levels, the most common communication problem for this group was a lack of reciprocal verbal communication behaviors such as providing both a response to others and leads for others to follow-up on, in conversations (Billstedt et al., 2007). In everyday life, these conversation difficulties can put the ASD adolescent at risk for social rejection if, for example, the adolescent insists on directing conversations back to their own special interests, without offering comments about what another person wants to talk about. The other common problem in this study’s sample was impairment in the use of nonverbal communication skills such as using inappropriate or unvaried facial expression and abnormal voice intonation (Billstedt et al., 2007). A relatively high prevalence of nonverbal communication impairments were also found in a sample of 241 adolescents and adults with ASDs and a range of intellectual ability levels (Shattuck et al., 2007). Nonverbal communication impairments in this ASD population sample included limited use of pointing to express an interest or limited use of head nodding or shaking to communicate as well as restricted use of conventional (e.g., waving) and instrumental gestures (e.g., reaching out for more). These particular nonverbal communication impairments have important implications for predicting the future social interactions of adolescents or adults with ASDs. For example, if an ASD adolescent or adult displays a lack of facial expressions, abnormal voice intonation, and minimal use of gestures, others are likely to misinterpret their intentions, resulting in the ASD individual inadvertently angering or threatening others such as an employer or landlord.
Studies indicate that adolescents and adults with ASDs continue to have significant social problems as reflected by having limited to no friendships or acquaintances and difficulties understanding and engaging in romantic relationships. This difficulty with developing significant social relationships is influenced in part by their social and emotional reciprocity deficits such as their limited ability to share enjoyment or interests with others along with their limited understanding of other’s emotional states (see Seltzer et al., 2004, for a review). More recent follow-up studies of ASD adolescents and adults with a variety of intellectual abilities similarly indicate persistent problems with social reciprocity in a majority of the individuals studied. These problems were evidenced by limited and inappropriate interactions with same-age peers such as having poor eye contact or unfocused gaze along with a lack of emotional responsiveness, shared enjoyment, understanding of others’ emotions (Billstedt et al., 2007; Shattuck et al., 2007).
Studies of higher functioning ASD adolescents have found that higher levels of intelligence are not associated with equally high levels of adaptive social abilities necessary for relationships, college, employment, and independent living (Klin et al., 2007; Saulnier & Klin, 2007). These social impairments of individuals with ASDs may contribute to reports in the literature of the greater likelihood of becoming involved with law enforcement (Curry et al., 1993). For example, a follow-up study that included 70 adolescents and adults with Asperger’s Syndrome (AS) found that although the majority of this group was considered law-abiding, 10% had been involved with the law for issues such as fraud, harassment of others, stealing, assault, and sexual abuse (Cederlund, Hagberg et al., 2008). A recent survey of parents of ASD adolescents and adults (ages 13–36 years) compared to parent reports of typical adolescents and adults indicated that along with the younger subset of this sample, older ASD individuals did not necessarily have increased levels of social competence, and that level of social functioning significantly influenced levels of romantic functioning, despite the fact that many of these ASD individuals still had a desire for social and romantic relationships (Stokes, Newton, & Kaur, 2007). In addition to these study findings, the ASD adolescents and adults tended to engage in more inappropriate (e.g., intrusive and threatening) behaviors when in pursuit of romantic relationships with a wider variety of people (e.g., friends, strangers, celebrities) than did the comparison group of typical individuals (Stokes et al., 2007). The fact that problems with social reciprocity have been found to be the most central and persistent problem, regardless of intelligence level, highlights this as a critical area to address when preparing individuals with ASDs for adulthood (Shattuck et al., 2007).
Restricted and Repetitive Behaviors and Interests
Behaviors in this ASD diagnostic domain include stereotyped and repetitive body movements and manipulation of object parts, compulsions and rituals, insistence on things being the same, circumscribed interests, and self-injurious behaviors (Schultz & Berkson, 1995; Lewis & Bodfish, 1998; Bodfish et al., 2000). Studies of these behaviors in adolescents and adults with ASDs indicate mixed results regarding these behavior difficulties (see Seltzer et al., 2004, for a review). A recent follow-up study did not find significantly high levels of maladaptive or stereotyped behaviors in their sample of 105 adolescents and adults with ASDs and varying levels of intellectual ability; however, more than half of this sample had problems with engaging in repetitive activities or routines (Billstedt et al., 2007). Another finding was that a majority of this sample (93%) had sensory response problems such as aberrant behavior responses to being touched or when exposed to auditory or visual stimulation (Billstedt et al., 2007). This finding of pervasive sensory response problems in adults with ASDs has been replicated in other studies (e.g., Leekam et al., 2006). Hypotheses have asserted that individuals with ASDs may engage in repetitive behaviors to induce a sensory experience or that repetitive behaviors are a response to a sensory experience (Liss et al., 2006).
A study by Shattuck et al. (2007) of 241 adolescents and adults with ASDs revealed significant improvements in all maladaptive behaviors measured, including improvements in the areas of repetitive activities and restricted interests, with greater likelihood of improvement in individuals age 31 years and older. However, individuals with ASDs and mental retardation (MR) had more maladaptive (e.g., aggression or self-injury) behaviors and less improvement in behaviors over time (Shattuck et al., 2007). An important situation for consideration is that if an ASD individual has communication difficulties and they experience pain related to medical issues or perceive an aversive sensory experience, then this may cause him or her to display an increase in self-injurious or aggressive behaviors. This possibility has implications for the determination of future adult living environments for these ASD individuals. For example, if an ASD individual does not learn more effective means of communicating and his or her behaviors escalate to the point of regularly displaying threatening or dangerous behaviors in response to activities or transitions, then they are not likely to remain in community-based programs (Cox & Schopler, 1993).
Daily Living Skills
As previously mentioned, ASD individuals tend to have higher intelligence levels compared to their levels of adaptive functioning, and they tend to show less of an increase over time in acquiring adaptive skills as compared to typically developing peers (e.g., Lockyer & Rutter, 1969; Rumsey et al., 1985; Freeman et al., 1991; Schatz & Hamdan-Allen, 1995; Bryson & Smith, 1998; Carter et al., 1998; Gillham et al., 2000; Bolic & Pousika, 2002; Gabriels et al., 2007). In autism research, the Vineland Adaptive Behavior Scales (VABS; Sparrow et al., 1984) is often used to measure adaptive skills in the areas of communication, daily living, social, and motor skills. Specific deficits on the VABS have been observed in studies of adolescents and adults with autism with a wide range of intellectual abilities, including limited leisure interests, lack of awareness of the need to dress according to situation, poor motor coordination, problems with receptive and expressive language, difficulties with interpersonal social skills, and dependence on others for daily living activities (Billstedt et al., 2007; Klin et al., 2007; Saulnier & Klin, 2007; Shattuck et al., 2007). Notably, it is important for caregivers and service providers to be aware that adolescents with high-functioning autism or AS will also need formal instruction in life skills, because they may not naturally learn these skills from family members or peers.
Living and Vocational Environments
Over the past 30 years, several studies have examined the types of living and vocational environments that ASD adolescents and adults typically attain. Follow-up studies have revealed that although there is considerable variability in adult role outcomes in areas such as independent living, education, vocations, and relationships, a substantial number of individuals do not live independently, are dependent on their families and service providers for assistance with daily living activities, and have limited social networks. The few individuals who have jobs tend to be poorly paid. (See Seltzer et al., 2004, for a review.) There is, however, an estimated 15% to 25% of the ASD population with higher intellectual and language abilities, who have more favorable outcomes in these areas, but more research is needed to investigate the predictors of such outcomes (Seltzer et al., 2004).
Cederlund et al. (2008) conducted one of the first studies to prospectively examine the long-term (i.e., more than 5 years) outcomes of a group of 70 males (ages 16–34 years) diagnosed with AS with higher intellectual and language abilities compared to 70 males (ages 16–36 years) diagnosed with autism, the majority (93%) of whom functioned below the average range of intellectual ability. In the AS group, 27% had what was defined as a “good outcome” by (1) being employed or engaged in higher education or vocational training and (2) living independently if age 23 years or older or (3) having two or more friends if age 22 years or younger. Only 3% of those in the AS group were identified as having “poor outcomes” as defined by having obvious impairments in independent and social functioning but still having communication skills. There were no individuals in the autism group who had “good outcomes,” and 56% had “very poor outcomes” as defined by an inability to function independently and having limited communication skills. With regard to living environments, 64% of individuals in the AS group age 23 years and older were living independently, although they were all still dependent on caregivers for support. Only 8% of individuals in the autism group age 23 years and older were living independently, although all were still dependent on caregivers for support. These results support the need to consider providing life skills interventions to ASD individuals regardless of their level of intellectual functioning. In addition, for the ASD individuals who have lower intellectual abilities, it is important to consider the value of specifically targeting interventions to improve communication and independent living skills.
Promoting Optimal Functioning to Learn Life Skills
To learn necessary life skills, ASD individuals need to be able to attend and focus rather than be distracted by medical or psychological issues. For example, sometimes adolescents or adults with ASDs may engage in behaviors involving tantrums, self-injury, aggression toward others, and destruction of property. As a result, life skill teaching environments such as home and community-based school or vocational settings are likely to determine that these individuals are unmanageable. This can then lead to considering more restrictive placements for these individuals where the individual is not expected or allowed to develop life skills to their full capacity.
Behavior problems can affect the ability of an ASD individual to attend to and learn from interventions designed to develop life skills. Addressing an ASD individual’s problem behaviors requires an exploration and understanding of the possible underlying causes related to such behaviors (e.g., medical or psychiatric co-morbidities). A process of active exploration to determine the underlying causes is warranted, because it is difficult for ASD individuals to spontaneously report or describe their experiences in a way that can be understood by others (Theory of Mind: Baron-Cohen et al., 2000). The iceberg metaphor has been used to provide a visual representation of the “tip-of-the-iceberg” problem behaviors and the underlying medical/psychiatric issues or ASD-specific deficits that may be causing or are driving the behavioral presentation (Cox & Schopler, 1993; Peeters, 1995). This iceberg metaphor serves as a reminder for interventionists to avoid simply attempting to change the visible tip-of-the-iceberg behaviors and instead consider seeking ways to understand and be understood by the individual with an ASD (Morgan, 1996). The following section provides an overview of the myriad of medical or psychiatric issues that are important possible causes or contributors to behavior problems in ASD individuals that should be considered and addressed. (See Gabriels & Hill, 2007; Gabriels & Van Bourgondien, 2007; and Goldson & Bauman, 2007, for further discussion about physical, medical, and emotional issues related to individuals with ASDs entering adolescence.)
Like individuals in the general population, ASD individuals face a wide range of health-care challenges. Deterioration in behaviors or sudden onset of behavioral and emotional disturbances should alert caregivers to the possibility of a physical illness (Wainscott & Corbett, 1996). Compared to the general population, there is a high rate of epilepsy (29%) in individuals with autism who also have lower intellectual functioning, and there is an increased risk of seizures during early childhood and adolescence (Volkmar & Nelson, 1990; Gillberg & Billstedt, 2000; Kielinen et al., 2004). Gastrointestinal (GI) symptoms are prevalent (24%), with chronic diarrhea being the most common (12%) concern in individuals with autism (Molloy & Manning-Courtney, 2001). Along with this, constipation can be a concern because of diet issues or medication side effects. GI symptoms should be taken seriously and investigated because they can cause significant discomfort for the ASD individual, which may result in significant behavior problems (e.g., severe aggression toward self or others) (Goldson & Bauman, 2007).
Abnormal response to sensory input has been documented in numerous studies, and this has implications for the behavioral presentation of ASD individuals (e.g., Baranek et al., 2005). Abnormal sensory responses in ASD individuals can include over- and under-responsiveness to sensory input as well as actively seeking sensory input in all sensory domains (auditory, visual, vestibular, tactile, and oral; Dunn, 1999). It has been hypothesized that along with an individual’s perception of sensory information, his or her physical or emotional well-being can affect the intensity of his or her behavioral response (Ayres, 2005; Kerstein, 2008).
Sleep problems resulting from a variety of medical and psychosocial issues are common in ASD individuals and include problems falling asleep and staying asleep, sleeping too much, or experiencing events that interfere with sleep such as seizures (Malow, 2004; Allik et al., 2006). There is an indication that the sleep problems in individuals with ASDs may exacerbate issues such as stereotypic behaviors and communication problems observed during daytime activities (Schreck et al., 2004).
Individuals with ASDs may have more oral conditions (oral injuries, oral sensory defensiveness, and teeth-grinding) compared to children with general developmental delay. These factors can result from a combination of poor daily dental hygiene and inconsistent visits to the dentist, which might increase their risk of developing dental disease (DeMattei et al., 2007). Having dental or other medical problems that may result in general discomfort (e.g., oral sensitivities) or pain (e.g., jaw and headache pain from teeth-grinding), which can result in the ASD individual refusing to eat or engaging in self-injurious behaviors (e.g., head banging). Finally, it is important to help this ASD population access health care on a regular basis to monitor and proactively intervene with medical issues, which, if left untreated, may otherwise result in extreme behavioral exacerbations.
Mental Health Issues
Deterioration in the behavior functioning from an individual’s baseline ASD symptom presentation can signal the onset or worsening of a psychiatric condition. As is the case with medical issues, elevated behavior symptoms can interfere with an individual’s capacity to learn life skills and function as independently as possible. Higher rates of affective disorders, particularly depression, have been reported in the ASD population (Chung et al., 1990; Tantam, 1991; Abramson et al., 1992; Ghaziuddin & Greden, 1998; Leyfer et al., 2006). Affective disorders appear to peak in ASD adolescents and young adults and are signaled by behavior deterioration (e.g., increased irritability and aggression) (Gillberg & Billstedt, 2000; Ghaziuddin et al., 2002). Notably, ASD individuals with higher levels of intellectual functioning may be more acutely aware of their social and relationship difficulties, which can contribute to feelings of depression. Higher levels of anxiety disorders have been found in children and adults with ASDs compared to controls (e.g., Lecavalier et al., 2006; Leyfer et al., 2006; Gillott & Standen, 2007). The sources of anxiety for ASD individuals have included situation (e.g., being in a busy mall) and medical (e.g., blood draws) fears (Evans et al., 2005), along with specific phobias (e.g., loud noises) (Leyfer et al., 2006). There is growing evidence that symptoms of repetitive or obsessive behaviors can develop into a separate psychiatric obsessive-compulsive diagnosis in ASD children (Muris et al., 1998; Reaven & Hepburn, 2003) and adults (Szatmari et al., 1989; Tantam, 1991; Ghaziuddin, 2005).
The stress of caring for an ASD individual can impact both the individual and their family members. The unique family system, family life cycle (ASD child entering adolescence), and extended support systems are all important factors that can improve the understanding of an individual’s behavior problems and identification of needed family service supports to relieve stress (e.g., respite care, parent training, or support groups) (Head & Abbeduto, 2007). Systems theory asserts that families are interactive systems with each member contributing to, influencing, and being influenced by all aspects of family life and their environment (Minuchin, 1974). Caring for ASD individuals can involve considerable expenditures of time, finances, and effort beyond the typical responsibilities of parenting. Parents of ASD children have reported higher levels of stress, depression, marital discord, and pessimism about their child’s future than parents of children with other developmental disabilities. (See Head & Abbeduto, 2007, for a literature review.) Specific caregiver concerns that relate to having a child or adolescent with an ASD include the individual’s behavior problems (e.g., defiance, disruption, aggression), social and communication deficits, and dependency needs that can restrict family activities (e.g., Fong et al., 1993; Lecavilier, Leone, & Wiltz, 2006).
Parent and sibling factors as well as significant life events are important issues that can affect the behavior presentation of the individual with an ASD. Parents of ASD individuals tend to have elevated levels of psychiatric (Yirmiya & Shaked, 2005) and developmental difficulties (Piven et al., 1997) that can affect how they relate to and engage with the ASD individual. For example, if a caregiver struggles with cycling moods, then this parent may give mixed affective messages that can be extremely frustrating and confusing to the ASD individual, who tends to best understand situations when simple and clear-cut messages are provided. On-going exposure to this kind of environment may result in the ASD individual chronically experiencing high levels of anxiety linked with rage reactions. Sibling relationships (e.g., lack of sibling closeness or positive interactions) can also be a contributing factor to the behavioral expression of the sibling with an ASD, depending on the specific coping patterns (e.g., avoidance of the ASD sibling) adopted by the neurotypical sibling (see Orsmond & Seltzer, 2007, for a review.) Finally, exposure to negative life events such as a family move or the death of a family member can be associated with an increase in behavior and mood symptoms (e.g., crying spells, irritability, and sleep and appetite disturbance) expressed by the ASD individual (Ghaziuddin et al., 1995).
Autism Spectrum Disorder Symptom Variability: Hypothetical Case Examples
Individuals with ASDs can present with a wide variability of core ASD social, communication, and behavior symptoms combined with a range of intellectual functioning and associated issues. The following two hypothetical cases provide examples for considering how symptom variability requires an individualized life skill intervention approach. In the first case, AS is the diagnosis; however, it is important to note that current research has not provided evidence that there are clear-cut differences between the impairments and service needs of AS and high-functioning autism. (See Kasari & Rotheram-Fuller, 2005, for a review.) These case examples will be discussed again in the life skills intervention section to review possible solutions to address the issues presented here.
Joe is a 13-year-old adolescent male with AS or high-functioning autism with at least average intellectual ability and language skills. Although Joe’s communication skills include a large vocabulary and ability to engage in conversations about his particular interests, he makes fleeting eye contact and speaks in a monotone voice slightly above the volume level of his peers; his peers are often confused by his facial expression because it rarely changes from looking “serious.” When Joe’s classmates try to involve him in conversations, they become frustrated by his insistence on guiding conversations back to things of interest to him. Socially, Joe has been teased by peers because he sometimes forgets he is in public settings and puts his hands in his pants to touch his genitals. He desperately wants to fit in with a peer group at school and has tried to imitate the behaviors and dress of certain social groups, but he has done so to such an extreme that he has been further rejected. Joe’s friendships are limited to a much younger girl in his neighborhood and an e-mail pen pal. Joe likes to figure out how mechanical things work, and sometimes this has resulted in his being accused by others of “breaking” their things. Joe’s behavior becomes extremely agitated (e.g., he makes loud remarks or threatens to hurt others) when others try to talk to him about how his behavior impacts them. He also becomes significantly more resistant when he is asked to do something he does not want to do, does not get his way, or if the bell rings to signal time to transition to his next class. In the past, he has been suspended from school because he said he wanted to “blow up the school.” At home, Joe has little interest or involvement in activities of daily living, including his self-care. He spends a majority of his time on the computer and tinkering with mechanical things around the house. Joe refuses to attempt or assist with simple chores or meal preparation. He prefers to eat variety of unhealthy snacks throughout the day. Joe refuses to shower on a daily basis and he often needs reminding to dress appropriately for weather changes because he prefers to wear shorts or pajama pants all of the time. Because of Joe’s interest in tinkering with mechanical things and computers, his parents have considered future living and vocational environments that include being in a college living environment with supports to address his self-care and social skills deficits. Within such an environment, they hope Joe might learn skills necessary to work with information technology or mechanical engineering.
Sarah is a 15-year-old adolescent female with autism and moderate MR. Sarah communicates by using sign language and some simple phrases. However, she uses only a few signs, is not precise in gesturing signs, and her verbalizations tend to be repetitive or echoed. If she is offered a choice, Sarah tends to echo the last thing said to her regardless of her preference. Sarah can also communicate her needs by writing simple sentences, but her primary mode of communication is to grab or throw things. Sarah can read simple words or phrases and understand expectations others have for her if provided with a demonstration or simple written instructions presented with pictures. Sarah enjoys swimming, jumping on the trampoline, and singing in social settings. Sarah can take turns with others to play simple board or card games but quickly loses interest. At school and in other community settings, Sarah tends to stand too close to others and will spontaneously touch others or smell their hair. She also tries to take her clothes off or masturbate in public settings. Behaviorally, Sarah has a hard time waiting and will begin to bang her head when she is expected to wait too long. She can easily become angry and out -of control when she is simply told “No” or asked to do something. Sarah frequently chews holes in her shirts and hits her face, head, or neck repetitively. These behaviors worsen when she becomes emotionally distressed. Sarah tends to grind her teeth at night and at times during the day. She wakes up several times throughout the night. At home, Sarah’s activities of daily living are limited to sitting in a rocking chair or swing, watching movies, completing 150-piece puzzles, tearing out magazine pictures and sorting them into piles, or listening to music. Her piles of pictures have cluttered many of the living spaces in her home, but her parents do not move them for fear she will become extremely upset. Sarah’s parents also do not engage her in helping with simple chores around the house or cooking, because she needs too much supervision to complete such tasks. Sarah can use the toilet but sometimes needs to be reminded to go to the bathroom and needs help with wiping thoroughly. Sarah needs some assistance with completing the steps involved in bathing and brushing her teeth. She has not been to the dentist in several years because of related emotional distress. Sarah’s parents have worried about what they will be facing in terms of finding appropriate living and vocational environments for Sarah. They are concerned that Sarah may eventually need to live in a very restricted setting with maximum staff assistance and wonder if she will ever be able to do vocational work.
The next sections review interventions that can be gleaned from the literature regarding the underlying learning styles and needs of individuals with ASDs. Following this, example strategies to address the individual needs and capabilities of these two case examples will be provided.
Teaching Survival Life Skills
What and When to Teach
To determine which survival life skills to teach in preparation for adulthood, it is crucial to identify which behaviors will be needed for the ASD individual to function in a future environment. Following this, it is necessary to systematically teach those behaviors throughout the child’s life. During each life stage, systematic teaching of life skills should involve interventions that build on the individual’s current behaviors, strengths, and interests while considering questions such as “How will this skill assist the child in the future?” Families can be valuable life teachers for ASD individuals by embedding the instruction of life skills into the daily activities of family life. This is an important strategy because ASD individuals have difficulties with skill generalization and function better with predictable routines.
Table 67-1 provides a list of suggested life skills to teach ASD individuals. Skills are summarized under core diagnostic domains. For a more comprehensive guide to life skills for this population, see the Suggested Reading for a list of resources.
Table 67–1. Suggested life skills to teach
Communication Life Skills
Social Life Skills
Behavior Life Skills
Expressive language skills
Communication aids, pictures, sign language, or adaptive devices
Receptive language skills
Understanding nonverbal cues, figurative language, and sarcasm
Friendships (shared enjoyment)
Medical health care
Diet and meal preparation
Awareness of levels of internal states
Developing coping skills
Leisure and sensory-oriented recreation activities
Respecting personal space and property
Understanding public versus private behaviors
Dealing with emergencies
School settings should incorporate teaching life skills into the curriculum to prepare ASD individuals for vocational and adult living environments. The individuals with Disabilities Act of 1990 (P.L. 101–476) mandates state and local educational agencies to develop an Individualized Education Plan (IEP) for students with disabilities. The IEP maps out how an individual’s unique needs can be met to prepare him or her for further education, employment, and independent living in state and local educational agencies. (See Steedman, 2007, for a thorough review of the laws impacting the treatment and long-term care of individuals with ASDs.) Assessment tools such as the TEACCH Transition Assessment Profile–Second Edition (TTAP) can assist the IEP intervention planning process by identifying the individual’s life skill strengths and weaknesses (Mesibov et al., 2007). The TTAP evaluates the individual’s life skills in home and school/work environments in areas such as vocational skills, independent functioning, leisure skills, functional communication skills, and social skills.
How to Teach
Parents may have implemented a variety of best practice behavioral and cognitive-behavioral intervention strategies when the child with an ASD was young but may have discontinued using these strategies when the child enters adolescence, assuming that the child has outgrown such techniques. However, these previously used strategies may still be very important and necessary, because the ASD adolescent is still learning and processing information in the unique ways particular to this ASD population. This section provides an overview of the unique ASD learning styles and identifies a few key behavioral intervention strategies. This section is not meant to provide an in-depth review or discussion of behavioral intervention theories or methods; rather, this section provides a way to consider extending intervention techniques to match the learning needs of the adolescent with an ASD.
Mesibov (2005) refers to the “culture of autism,” which is an extremely useful approach to linking theoretical understandings of this ASD population to intervention approaches. Thinking of autism as a “culture” helps make the tremendous ASD symptom variability comprehensible by focusing on common learning characteristics and patterns of behavior. Such understanding can enhance the implementation of interventions to improve the functioning of ASD individuals in society.
Individuals With an Autism Spectrum Disorder Tend to Think Concretely
Concrete thinking can be evidenced in their difficulties with pragmatic language skills, which involve social, emotional, and cognitive factors that enable an individual to effectively communicate and receive messages (Twachtman-Cullen & Twachtman-Reilly, 2007). Concrete thinking can put an ASD individual at risk for not understanding things such as figurative language (e.g., “Give me a hand”). The ASD individual thus may respond in inappropriate ways or become confused by social situations, social conversations, or school lectures. Intervention techniques such as Social Stories™ (Gray, 2000) are frequently used to teach ASD individuals how to respond and manage their behavior during a variety of social situations. Social Stories™ provide concrete and well-defined social rules and socially appropriate behaviors that the individual can follow to engage more successfully. Social Stories™ have demonstrated some effectiveness in decreasing the negative behaviors in individuals with ASDs (Rust & Smith, 2006; Scattone et al., 2007). Social skills training groups also are an important intervention consideration because they have demonstrated skill improvements in ASD adolescents (e.g., Tse et al., 2007). Teaching ways to deal with bullying can be taught through organizations such as KIDPOWER (www.kidpower.org), an international organization that provides instruction regarding the practical skills needed to address confrontation and victimization (van der Zande, 2007).
Individuals With an Autism Spectrum Disorder Struggle to Understand Others’ Intentions, Emotional States, and Behaviors
This struggle has been referred to as “mind-blindness” and described by the Theory of Mind (ToM) (Baron-Cohen, 1995; Baron-Cohen et al., 2000). This impaired mentalizing ability can make it difficult for ASD individuals to infer possibilities based on available information, reflect on how their own behaviors may affect others, and problem-solve ways to change their behaviors to improve their social relationships. For example, an ASD adolescent may become extremely angry if his routine of being picked up by his mother at an appointed time is delayed. This adolescent may be unable to generate more than one possibility to explain why his mother is late; if he could, he may be more forgiving of things he cannot control. Social Stories™ or opportunities to learn by “doing” or role-play can be useful interventions to address this issue. Other techniques derived from behavior learning theory and principles of ABA have evidenced effectiveness with ASD individuals (see Matson et al., 1996, for a review of behavioral interventions in autism.) For example, highlighting (e.g., giving social praise) to the ASD individual’s appropriate social behaviors whenever they occur serves to both increase the individual’s awareness of desired social behaviors and motivate them to display these behaviors more frequently.
Individuals With an Autism Spectrum Disorder Tend to Focus on Details at the Expense of Seeing Things in Context or Getting the “Big Picture”
This difficulty integrating ideas affects the ASD individual’s ability to generalize information across situations and has been described by Weak Central Coherence Theory (Frith, 2003). Unfortunately, success in the social world heavily depends on the integration of details such as facial expression, vocal intonation, gestures, body language, and words in context. For example, an ASD individual may not understand the nonverbal or verbal cues of someone else being frustrated with his or her inappropriate remarks; therefore, the ASD individual may continue to escalate his or her inappropriate behavior, misreading the nonverbal cues of another person. One helpful technique to encourage motivation and understanding with ASD individuals is to use the “First do this, then get that” behavior teaching strategy. For example, at the first signs the ASD individual is being socially inappropriate, the other person can tell the ASD individual that they will return to talk with them when the ASD individual is engaging in a specific socially desired manner and then immediately remove their attention and engagement. Although ASD individuals may have impaired social interactions, they are still are motivated to engage with others. Being told,“First do this, than get that” is a strategy that works well to motivate ASD individuals to do something they may be less interested in doing, such as a chore or a task for another person, because following this, they know they can engage in their preferred activity.
Individuals With Autism Spectrum Disorder Have Difficulty With Organization and Sequencing
This has been as described by the theory of Executive Dysfunction (Ozonoff, 1995; Russell, 1997). Executive functions include cognitive flexibility, an ability to apply social rules flexibly, control impulses, organize, and initiate activities. Individuals with an ASD may have difficulties completing a task unless the steps are clearly outlined for them. They also may have trouble completing activities in a timely manner unless they are provided with specific cues to know when an activity is to be finished. Structured intervention methods such as those developed by Division TEACCH address the poor organization and sequencing skills of ASD individuals (Schopler et al., 1995). For example, the TEACCH approach offers strategies for modifying or structuring the physical environment to enhance comprehension of and cooperation with expectations using such techniques as visual schedules and breaking down multiple-step tasks (e.g., showering) or events (e.g., shopping) into more manageable parts (Krauss et al., 2003). Studies of individuals with ASDs in natural environments have demonstrated that the introduction of external structure (e.g., visual cues like pictures and physical organization) combined with predictable routines can help increase on-task behaviors and completion of work (MacDuff et al., 1993; Hume, 2005). There is also evidence to support alternating activity schedules between preferred (those activities not associated with challenging behaviors) and less preferred activities (activities that evoke challenging behaviors) to decrease the presence of behavior problems (Liptak et al., 2006). See previously mentioned “First do this, then get that” strategy.
Individuals With an Autism Spectrum Disorder Tend to Be Very Distractible, yet Able to Focus Intensely on Things of Particular Interest to Them (Dawson & Levy, 1989)
They can be abnormally aroused or distracted by sensory input such as sound, touch, smell, taste, or movement (Greenspan & Wieder, 1997; Hirstein et al., 2001; Baranek et al., 2005; Tomchek & Dunn, 2007). An ASD individual’s focus on stereotyped or repetitive behaviors can distract him or her from being able to attend to teaching tasks. Preferred or “attractive” sensory stimulus conditions have resulted in a reduction in stereotyped movement behaviors in children with autism (Gal et al., 2002). In addition, it may be easier to motivate and teach new information to ASD individuals if the new skill can be linked to their particular interests or preferred activities (Delmolino & Harris, 2004). Given this information, important intervention strategies for ASD individuals include teaching life skills in learning environments free from aversive sensory input and linking new skills with things that are familiar to or preferred by the ASD individual.
Tables 67-2 and 67-3 provide examples of intervention solutions to some of the issues described in the hypothetical cases presented earlier in this section. Notably, these intervention solutions are not intended to be a comprehensive list of options to consider.
Table 67–2. Hypothetical case I solutions for 13-year-old male with Asperger’s syndrome
Life Skill Domain
Strengths and Needs
Life Skill Goal
Strength: Interest in computers and how things work
1) After-school clubs involving his interests
Development of prevocational skills and friendships who share interests
Need: Social conversation skills
2) Social skills groups
3) Individual or group therapy with a speech language pathologist
Increased awareness & understanding of survival social conversation skills
Strength: Desire for friendships & ability to imitate others
1) See above social interventions.
2) Involve in a school job
1) See above
2) Provide a defined social engagement role with peers.
Need: Lacks awareness of private vs. public behaviors, & maintaining appropriate social boundaries
1) Teach what are private vs. public and social boundary behaviors
2) School class addressing sexuality issues
Increased pro-social skills to decrease possible involvement with law enforcement
Strength: Ability to vocalize frustrations
Needs: Lacks awareness of levels of internal states, triggers, and coping skills
1) Teach to rate levels of internal states related to triggers on a rating scale.
2) Work with an occupational therapist to identify sensory-related calming/coping strategies.
1) Increased understanding, expression, and ability to cope with frustrations
2) Decrease the possibility of expulsion from community settings.
Activities of daily living
Strength: Motivated by computers and tinkering with mechanical things
Needs: Lacks motivation and possibly an understanding of why or how to engage in variety of self-care and daily living activities
1) Daily written schedule alternating less preferred followed by preferred activity
2) Social story of why it is important to keep the body clean, exercise, and eat healthy food
Increased motivation and understanding to engage in adaptive daily living activities
Table 67–3. Hypothetical case II solutions for 15-year-old female with autism and mental retardation
Life Skill Domain
Strengths and Needs
Life Skill Goal
Strengths: Understands and uses some sign language and simple phrases. Pictures enhance her understanding
Needs: Limited ability to consistently communicate in multiple settings
1) Expect and reinforce continued use of sign language and phrase speech
2) Introduce a talking device with pictures and use it with her in multiple settings.
Use picture–word schedules.
3) Consult with speech language pathologist
1) Decrease frustrations resulting from a lack of ability to communicate needs or to understand others’ expectations.
2) Increase ability to be understood by a variety of individuals in multiple settings.
Strengths: Interest in others and in soothing self
Needs: Lacks understanding of appropriate public vs. private behaviors
1) Teach to use specific location for identified private behaviors.
2) Teach to give handshakes for greetings and to ask to get close to or touch others.
3) Teach variety of leisure skills expanding on sensory and special interests.
Increase pro-social and leisure skills to decrease possible involvement with law enforcement and reduce risk of victimization.
Strengths: Attempts to occupy self when waiting or soothe self when upset.
Needs: Difficulty knowing what to do when waiting
1) Use timers (e.g., vibrating watch or hourglass) to signal how long she is to wait.
2) Teach to engage with “waiting” (e.g., sensory-oriented materials made available every time she has to wait.
Increase ability to wait in a pro-social and safe manner.
Needs: May be experiencing headache and neck pain related to teeth-grinding behaviors
1) See dentist to evaluate condition of teeth.
2) Consult with medical professional about pain management strategies.
3) Consult with occupational therapist to define sensory relieving activities.
4) Provide socially appropriate items to chew such as rubber-type jewelry.
Improve dental health and identify pain management and self-regulation strategies to reduce negative behaviors.
Activities of daily living
Strengths: Motivated by swinging, movies, puzzles, and sorting pictures
Needs: Lacks motivation, and ability to engage in activities of daily living
1) Daily picture schedule alternating less preferred followed by preferred activity
2) Mini picture schedule of the steps to do a skill.
3) Consult with occupational therapist to identify strategies to help engage in daily life activities.
4) Incorporate sorting skills into chore activities.
Increase motivation and ability to engage as independently as possible in a wider variety of daily living activities.
Transitions to Residential and Vocational Training Environments
Ideally, transitions to adulthood should be a gradual planned process that is originally considered when a child is diagnosed, is reconsidered when the child enters puberty, and is then again considered when they reach adulthood. The transition to adulthood has been defined as an “… active process that attends to the medical, psychosocial, and educational-vocational needs of adolescents as they move from child-oriented to adult-oriented lifestyles and systems” (White, 1997, p. 698). Transitions can involve moving from educational to work settings from pediatric to adult health-care providers and from living with the family to living in community settings. Caregivers should make plans and adjustments in their perspectives of eventually having to “let go” during each of these life time periods to minimize having to make (haphazard) decisions in a crisis about issues such as where an ASD individual should live (White, 1997). Such prospective planning can help ensure that life-long social and financial support networks are identified and developed long before the individual reaches adulthood (Aman, 2005). For example, establishing a living will and advanced directives (or mental health plans) can provide guidance to future treatment providers about the child’s strengths, needs, and problem behavior warning signs. Organizations such as the National Alliance on Mental Illness (NAMI) provides one of the largest network of supports and information for improving the quality of life for individuals with special needs, including supports for helping individuals with an ASD transition to independent living and college (www.nami.org).
Individuals with ASDs are a diverse group, and although some may be able to live independently, other individuals may require supports to live in a safe and healthy manner. It may be difficult for parents to consider planning alternative living settings during their child’s early years, because they may be distracted by the daily life struggles related to managing the ASD child’s current needs. However, as early as possible, parents should begin considering future living environments for their child because government and private residential agencies are limited. The National Association of Residential Providers for Adults with Autism (NARPAA) is a good resource for finding U.S. agencies that provide residential services (www.NARPAA.org). Parents may consider supervised group homes or other supportive living arrangements. Supportive co-housing arrangements may include setting up an apartment with a hired caregiver or other living arrangements that include a peer roommate who has free or discounted rent in exchange for looking out for the ASD individual. After an ASD individual reaches age 18 years, they may qualify for Supplemental Security Income (SSI) to assist with living expenses, although the individual may still live with their parents (www.ssa.gov). Finally, it is important for parents to consider a special needs trust for their ASD child so that he or she can continue to be cared for after the death of the parents. Notably, some trusts or monies in the child’s name may impact the child’s continued eligibility for benefits such as SSI.
There are several programs that provide supportive residential environments where ASD students can receive assistance to develop social and daily living skills while taking courses at a nearby community college. Two examples are The College Internship Program (http://www.collegeinternshipprogram.com) and the College Living Experience (http://www.cleinc.net/home.aspx). Such programs also provide academic assistance to complete college and assistance to prepare the individual for the transition to independent living. Assistance includes helping the ASD individual break down academic and daily living tasks into manageable steps, learn self-regulation stress management skills, develop appropriate friendships, and manage medications, as needed. Other programs provide support to ASD students outside of a residential environment. For example, the AHEADD Model (http://www.aheadd.org) provides continuum of professional staff and peer mentors who serve as liaisons, personal advocates, and coaches to the student with an ASD who is competitively admitted to a college of their choice. Finally, contacting the office for disability services on college campuses can be another resource for services and supports for the ASD individual. See Blumberg (2005) for a more in depth discussion of college, career, and residential supports.
Employment Training Programs
Project SEARCH is a high school transition program that provides work training experiences in an effort to increase employment opportunities for individuals with disabilities (http://www.cincinnatichildrens.org/svc/alpha/p/search/). Project SEARCH began at Cincinnati Children’s Hospital Medical Center in 1996 and now has more than 106 replication sites across the United States. Although a majority of the SEARCH training programs are within health-care settings, other settings include banks, universities, and manufacturing sites. Project SEARCH provides unpaid year-long vocational preparation internships to high school students (ages 18–21 years) with disabilities. These internships involve hands-on experience in employment settings with highly trained job coaches. The internship focuses on teaching appropriate hygiene, social, and communication skills along with skills related to improving students’ ability to take direction, change their behavior, and access public transportation. Admission into the internship program depends on the student’s updated immunization record, desire to work, and ability to pass a drug screen and background check. Following the completion of this internship program, there is no commitment by the training site to hire the student, although students typically become employees (Personal Communication Project SEARCH co-founder Erin Riehle, March 13, 2009).
Expanding the possibilities for an optimal quality of life when ASD children grow up necessitates assessment and treatment their medical and psychological health as well as teaching necessary life skills that build on the current behaviors, skills, and interests of the ASD individual. Families can be valuable life teachers for their ASD child by routinely embedding the instruction of life skills into activities of family life, making this teaching a part of routines that are practiced every day. The ASD learning style culture is an important consideration when developing life skills interventions to encourage skill acquisition and generalization across vocational and living environments.
Challenges and Future Directions
• Follow-up studies are needed to evaluate the outcomes of the next generation of adolescents and young adults with ASDs who received intensive early intervention services in the 1990s.
• Studies are needed to assess the actual implementation of life skills preparation in academic environments for ASD individuals along with the impact of these programs on social and vocational outcomes.
• More resources are needed to address the residential and vocational needs of the older adolescent and young adult with an ASD.
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Thanks to Pamela Horne, M.D., Lauren, Kerstein, LCSW, Rebecca Howard, M.A., and John A. Agnew, Ph.D. for their editorial suggestions and support with this chapter.
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