(p. 182) Working with Adolescents with Autism Spectrum Disorder
This chapter discusses issues related to the identification and treatment of autism spectrum disorders. Changes in the diagnostic criteria are described in relation to the effects these may have on school personnel who develop intervention plans for students with autism. We also discuss evidence-based treatments as well as prevention strategies that are effective in improving core and secondary characteristics of adolescents with autism spectrum disorders in school settings. Finally, a variety of general issues related to service delivery are presented.
Issues Related to Identification and Referral for Treatment in Schools
There are several important issues relating to identification and treatment of adolescents with pervasive developmental disorder in schools. In regard to the history of autism, Leo Kanner first described 11 children in a 1943 paper titled “Autistic Disturbances of Affective Contact” whose characteristics were markedly distinct; all were described as having social, communicative, and behavior issues. These three categories remained relatively stable as diagnostic criteria until May 2013, when the diagnostic criteria for autism spectrum disorder (ASD) were changed, which may affect the diagnosis, referral, and treatment process. In this section we will discuss the history and changes in the diagnostic criteria, implications for practitioners, and assessment issues in relation to identification and referral.
To provide a little background, the DSM-III (released in 1980) was the first to describe the general category of Pervasive Developmental Disorders (PDD), which included Childhood Onset PDD, Infantile Autism, and Atypical Autism (prior to 1980, children exhibiting these characteristics were diagnosed with schizophrenia) (DSM-I, 1952; DSM-II, 1968). In 1987 the DSM-III was revised (p. 183) to include only Pervasive Developmental Disorders-Not Otherwise Specified (PDD-NOS) and Autistic Disorder and was published as the DSM-III-R. Then, in 1994, additional categories were added to the DSM-IV, including Asperger’s Disorder, Childhood Disintegrative Disorder, Rett Syndrome, and PDD-NOS, such that PDD included five different diagnostic categories. Aligned with Kanner’s (1943) description, the diagnosis of autism required that an individual exhibit behaviors in three distinct areas: (1) impairment in social interaction; (2) impairments in communication; and (3) restricted repetitive and stereotyped patterns of behavior, interests, and activities. These three categories remained stable for many decades until May of 2013, when the DSM-5 combined the social and communication category. Along with that change, Autism Spectrum Disorder (ASD) was included as a single diagnosis, and Asperger’s Disorder (also referred to as Asperger’s Syndrome or AS), Childhood Disintegrative Disorder, Rett Syndrome, and PDD-NOS were eliminated. Another change in the DSM-5 is that, for diagnostic purposes, children are assigned “levels,” or scores, in regard to severity in each of the two categories (social communication and restricted repetitive behaviors). The severity ratings range from “Requiring Support” (Level 1) to “Requiring Very Substantial Support” (Level 3). Further, a new category, “Social (Pragmatic) Communication Disorder” (SCD), was added, which resembles some of the more mild forms of what was previously classified under ASD, such as PDD-NOS or AS. Individuals with average or above average vocabulary, structural language development, and intellectual functioning, but with deficits in the social use of language who do not exhibit restricted and repetitive behaviors, fall into this new category.
There are several issues that are important for school practitioners in regard to these changes. First, if a student received an ASD diagnosis prior to the 2013 change, practitioners and diagnosticians are not required to change the ASD diagnosis or rediagnose the students, despite the fact that many categories of ASD (and diagnostic labels) no longer exist. Therefore, two individuals demonstrating the exact same characteristics may have different diagnoses depending on the year in which they were diagnosed. This does not necessarily change the need for intervention, but it may change the level of support that is provided, as autism spectrum disorder is considered a severe disability, while language disorders often are not. Thus, many feel that the changes in the DSM will negatively affect the ability of some individuals, particularly those with fewer support needs, to obtain important intervention services (McPartland, Reichow, & Volkmar, 2012). In addition, research studies that have previously used diagnostic labels that no longer exist may make the applicability of described interventions more difficult to determine. But what does this mean for adolescents in the schools?
While most individuals with ASD will have received a diagnosis and have individualized educational programs (IEPs) in place well before their adolescent years, milder forms of ASD (such as AS) are often not diagnosed until late childhood or early adolescence (Matson & Nebel-Schwalm, 2007). These students also need an assessment and specialized programs for social difficulties. In regard to prognosis for those with ASD, the literature has been consistent over many years, suggesting (p. 184) that higher tested intelligence quotients along with better language and social communication skills in childhood are correlated with improved outcomes in adolescence and adulthood (Koegel, Koegel, Shoshan, & McNerney, 1999; Nordin & Gillberg, 1998). However, children with the more mild forms of the disability may no longer qualify for an ASD diagnosis, and despite their potential for good outcomes, they may not receive needed social interventions and comprehensive programs. Consequently, they may develop more serious symptoms as well as comorbid disabilities.
Comorbid disorders may develop before or during adolescence, and the presence of at least one comorbid psychiatric disorder may be present in as many as 80% of individuals on the autism spectrum (de Bruin, Ferdinand, Meester, de Nijs, & Verheil, 2007). In addition, some may also develop aggression or self-injury (Smith & Matson, 2010), anxiety (Wood et al., 2008; Wood & Gadow, 2010), depression (Lainhart 1999; Stewart, Barnard, Pearson, Hasan, & O’Brien, 2006), attention-deficit/hyperactivity disorder (ADHD; Simonoff et al., 2008), eating disorders (Huke, Turk, Saeidi, Kent, & Morgan, 2013; Rastam, 2008), phobias (Leyfer, et al., 2006), and/or obsessive compulsive disorder (OCD; Lainhart, 1999). Depression and anxiety may be difficult to measure among this population, as the diagnosis depends to some extent on intact verbal and communication skills. Therefore, the incidence may be even higher than estimated using standardized measures, and because instrumentation differs there is a range in reported comorbidity (Leyfer et al., 2006). For example, depression can range from 17% to 84% depending on the study. The presence of these comorbid disorders should not be taken lightly, as some research indicates that these may put the person at risk for suicide, greater levels of withdrawal, noncompliance, and aggression (Matson & Nebel-Schwalm, 2007). In addition, these comorbidities can increase already high levels of family stress and conflict, which may present even more chaos and discomfort in the adolescent with ASD’s life. Overall well-being- such as academic achievement, psychological health, community involvement, and employment, are likely to be affected if an individual (such as an adolescent with AS) does not receive services (Koegel, Ashbaugh, Koegel, Detar, & Register, 2013).
In addition to mental health, other physical health problems more common in individuals with ASD include seizures (Ballaban-Gil & Tuchman, 2000), and early or late (more frequently) onset of puberty is reported for over 20% of children with ASD. This population also has an increased likelihood of accidents that lead to an early death in 4% to 7%. It is reported that about 17% of individuals with ASD have a clear setback during adolescence, with close to half of those children never fully recovering (Billstedt, Gillberg, & Gillberg, 2005). How can school practitioners address these issues?
In terms of assessing the needs of these individuals, while standardized measures are available, they often do not reflect an individual’s behaviors in the school setting. Behavioral assessments can be systematically implemented so that certain (p. 185) areas, such as social isolation, can be quantified. Also, specific counts of the type of verbal interactions that are occurring between the adolescent with ASD and his or her typical peers can be analyzed through language samples. Comparing the type and number of responses during social interactions with typically developing peers provides an indication of how the adolescent is performing relative to typically developing students, and also provides suggestions for intervention. Pragmatic areas, including inappropriate body language, difficulties with intonation, poor social reciprocity, difficulties expressing empathy, and so on, which are often a problem, can also be analyzed and targeted.
Another important area to assess relates to bullying and victimization. While many typically developing adolescents report some bullying experiences (Salmivalli & Peets, 2009), these experiences are four times more likely to occur among students with ASD (Humphrey & Symes, 2010; Little, 2002; Roekel, Scholte, & Didden, 2010; Symes & Humphrey, 2010). Especially troubling is that more than half are considered victimized (repeated bullying) by their peers, particularly with students who exhibit social and communicative difficulties (Cappadocia, Weiss, & Pepler, 2012; Carter, O’Rourke, Sisco, & Pelsue, 2009). Students who are bullied are more likely to exhibit mental health problems, including poor social and emotional development, depression, and anxiety (Grills & Ollendick, 2003; White & Schry, 2011). For this reason, it is critical that school interventions focus on improving socialization, peer acceptance, and incorporation of typically developing peers in the process, and if students have been bullied, some interventions to address this may be necessary. Unfortunately, special education staff members are often overworked (Giangreco, 2003; Giangreco & Broer, 2005) and may neglect students who are socially isolated but do not exhibit any disruptive behaviors (which are often addressed immediately). Similarly, general education teachers are also often unaware of the lack of social skills students with ASD exhibit during nonacademic periods (e.g., lunchtime), as they are not with their students at these times. Attention to social issues and proper assessment may greatly improve the outcome of a student with ASD.
Training and education of teachers and paraprofessionals.
Along with assessment, identification, and referral, evidence-based treatments (EBTs) become relevant. That is, ASD is the fastest-growing disability category, but most general and special education teachers face challenges to which they are unaccustomed while educating these students. Research shows that the level of preparation and training that general education teachers receive for implementing EBTs for students with ASD is greatly lacking (Dybvik, 2004). Specifically, less than 5% of special education teachers and only about 4% of general education teachers are trained to implement appropriate EBTs for students with ASD (Loiacono & Valenti, 2010).In addition, more than 50% of teachers use ineffective treatments with these students (Hess, Morrier, Heflin, & Ivey, 2008). The National Research (p. 186) Council (2001) reports that most educators complete their graduate programs receiving minimal training in EBTs for teaching students diagnosed with ASD. These studies indicate that there is a clear problem with the currently accepted training models for special education teachers, and that graduate-level courses and in-services at the school sites need to emphasize the importance of using EBTs, such as behavioral treatment methodologies (Loiacono & Valenti, 2010; Dybvik, 2004). In addition, there is a need for special and general education teachers to collaborate and work as partners in order to provide a meaningful inclusive education for students with ASD.
Schools’ increased use of and reliance upon paraprofessionals adds another complex dimension. Special education teachers report that they spend an average of only 34% of their time instructing their students, while paraprofessionals report that they spend an average of 50% of their time instructing students (Morrier, Hess, & Helfin, 2011). In fact, paraprofessionals express concerns about being the primary instructor for students with disabilities, and this large responsibility often leaves paraprofessionals feeling a lack of appreciation and respect from educators and administrators, a desire for more training and clearer job descriptions, and a desire for quality supervision (Patterson, 2006; Riggs & Mueller, 2001). The reason for this shift in teaching responsibility is unknown, but some suggest that special education teachers are getting increasingly larger caseloads, which results in less time to provide specialized instruction for students with disabilities (French, 2001; Giangreco, Doyle, Halvorsen, & Broer, 2004; Suter & Giangreco, 2009). Furthermore, although there is a heavy reliance on paraprofessionals, special and general education teachers do not necessarily receive training on how to train and supervise them (French, 2001; French & Pickett, 1997; Scheuermann, Webber, Boutot, & Goodwin, 2003). Currently, the most common training method for paraprofessionals is required attendance at either half- or full-day workshops, followed by hands-on training and self-taught methods (Morrier, Hess, & Helfin, 2011), but these methods are infrequent, inadequate, and unsystematic. In reality, paraprofessionals are often left to make key educational decisions on their own (Downing, Ryndak, & Clark, 2000), and most report that they have to teach themselves how to work with their assigned students by reading, observing others, and recalling past experiences. Additionally, paraprofessionals receive little to no guidance on appropriately intervening when students exhibit inappropriate behaviors (Downing et al., 2000).
Most paraprofessionals are not properly trained in systematic prompt fading relevant to student proximity, and they therefore are unable to teach the student and then systemically fade their presence. Thus, they tend to either not engage with the child or to “hover.” Interestingly, when asked, paraprofessionals generally do not view hovering, or being in too close proximity, to their assigned student as a concern (Giangreco & Broer, 2005), and they view their assigned students as “a friend.” It is not surprising, therefore, that research shows that this close proximity negatively impacts the students’ social interactions with typical peers (Malmgren & Cauriston-Theoharis, 2006). Elucidating this unhealthy relationship is the fact that many students view having a paraprofessional as necessary for inclusion and (p. 187) socialization despite the fact that having a paraprofessional actually tends to compromise their social relationships with typically developing peers (Tews & Lupart, 2008). Furthermore, when paraprofessionals provide one-on-one support, the teacher-student relationship diminishes (Giangreco, Broer, & Edelman, 2001). In contrast, when the paraprofessionals’ service delivery model is program-based, with paraprofessionals assisting the teacher and having a collaborative role, the student-teacher relationship is not negatively affected. Thus, when paraprofessionals’ primary roles in the classroom are less instructional in nature and involve providing assistance to the teacher in such ways as making modifications to the student’s work or making sure the student is on task, the teacher-student relationship is not hindered (Robertson, Chamberlain, & Kasari, 2003).
Overall, this lack of training will affect the education of students with ASD. Once special and general education teachers are properly trained in EBPs, they may coordinate with and train paraprofessionals. It is important, therefore, for educators, researchers, and policymakers to work collaboratively in order to change the current standards in this regard. General and special education teachers and school staff should benefit from in-services on autism and behavior management, as well as learning to implement “practice with feedback” to assure that fidelity of implementation of EBPs is being met (Koegel & Koegel, 2013).
In the next sections, we will discuss intervention and prevention EBPs that have been successful with students with ASD.
Self-management is an ideal intervention to use with adolescents in school settings, as the procedures are designed to decrease the need for constant vigilance by a teacher, paraprofessional, or special education staff member. Self-management is accomplished by having the individual with ASD independently engage in, evaluate, monitor, and self-reward (when possible) the occurrence or absence of his or her own target behavior. It can be implemented using event recording or an interval system. The general self-management steps involve defining and measuring a target behavior and then teaching the individual to identify and record the occurrence or absence of that behavior. It is important that the intervals or number of responses are developed from the baseline data and are small enough so that the individual experiences success and receives frequent rewards initially for engaging in the desired behaviors. Eventually, the intervals or number of responses required for a reward can be gradually and systematically increased, so that fading is programmed into the intervention, which creates independence. Self-management can be used for a wide variety of behaviors. For example, adolescents have learned to improve their responsiveness to social conversation using self-management (Koegel, Koegel, Hurley, & Frea, 1992). The students, who only responded about half the time, were given small wrist counters that resembled a watch and taught to give themselves a point (by pressing the wrist counter) every time they immediately responded to a conversational partner’s (p. 188) question. All students improved their responsiveness, and the self-management was programmed to occur in natural community settings, where improvements were also noted in the absence of an interventionist. Other important pragmatic behaviors, such as eye contact, appropriate motor behavior, voice volume, topic maintenance, and so on, have been improved through self-management using time intervals, which can gradually and systematically be increased (Koegel & Frea, 1993). Interestingly, researchers have found that pragmatic behaviors tend to function as a response class, so that when one or a small number of behaviors is targeted, generalization to untreated pragmatic areas occurs (Koegel & Frea, 1993). Thus, self-management may be a particularly effective intervention when addressing multiple social and pragmatic areas in adolescents with ASD.
Many studies have shown that students can effectively respond to video modeling in school settings for a variety of different behaviors (Hitchcock, Dowrick, & Prater, 2003), but few have focused on using the procedure with individuals with ASD, particularly adolescents. While the studies that exist suggest that video modeling may be effective with individuals with ASD (de Bruin, Deppeler, Moore, & Diamond, 2013), it appears as though the individual must be able to attend to a model in order to engage in the observational learning required in the procedure. Also, the individual’s willingness to engage in role-play of the target behavior is helpful (Bellini & Akkullian, 2007). It has been noted that those individuals with ASD who prefer watching videos over engaging in human interaction are likely to respond more favorably to video modeling than in vivo intervention (Charlop-Christy, Le, & Freeman, 2000).
Video modeling can be implemented in a different ways, such as videotaping the adolescent and having him or her watch the clips while providing feedback (i.e., self as a model). Several good examples can be embedded in between “needs improvement” examples. After watching and discussing the video clips, the student can practice the appropriate behavior while videotaping for the next session. As such, the adolescent has an opportunity to view both positive examples and examples of the absence or excess of the target behavior. Other studies have clipped together examples of the individual’s successful use of the target behavior prior to viewing the clips. Finally, some interventions videotape another person engaging in the desired behavior, have the student watch these examples, and then have the student practice the behavior. While there is still research that needs to be conducted to better understand the procedure, the general consensus is that the more similar the model is to the target individual (in terms of physical characteristics, age, group affiliation, and ethnicity, as well as perceived competence of the individual), the more likely the individual will attend to the model (Bellini & Akkullian, 2007). Effective self-modeling programs have been demonstrated in school settings with adolescents using a number of different target behaviors, including functional skills and social communication (Haring, Kennedy, Adams, & Pitts-Conway, 1987), conversational skills (Charlop & Milstein, 1989), academics (Delano, 2007), and social conversation (Detar, 2013). While additional research is needed, video modeling appears to be a promising intervention for adolescents.
Functional behavior assessment.
(p. 189) In regard to problem behaviors, analyzing the setting events, antecedent stimuli, consequences, and environmental factors that may contribute to problem behaviors helps us to make environmental manipulations that reduce disruptive behaviors and/or teach replacement behaviors that serve the same function as the disruptive behavior. Setting events (also called establishing operations) are events that occur prior to the teacher’s instruction, social demand, or other event. Setting events alter the value of the consequence, so that the adolescent responds differently than usual. For example if an adolescent has premenstrual symptoms, feels ill, is tired, or is hungry, she may exhibit disruptive behavior when people attempt to interact with her in ways that previously were positive. If school staff are unaware of the setting event, the behavior may be viewed by as erratic or unpredictable. Understanding these situations helps to develop plans wherein the environment is manipulated to take the context (setting events) into consideration in order to avoid such situations in the future.
In cases where disruptive behavior is serving the common function of avoidance, escape, or attention (Wacker, et. al, 1990), replacement behaviors that serve the same communicative function can be taught (Durand & Crimmins, 1988). For example, if an adolescent engages in disruptive behavior every time the teacher asks him to engage in challenging academics, he could be taught to raise his hand and ask for “help” as a replacement behavior. Similarly, if a student is engaging in disruptive behaviors to gain social attention, teaching her how to engage in successful and appropriate social interactions will reduce the disruptive behavior. Importantly, when replacement behaviors are being taught, the disruptive behaviors need to be ignored so that they become inefficient and ineffective. A partial reinforcement schedule, when adults or peers inadvertently reward the problem behavior on some occasions, may function to maintain and strengthen the disruptive behaviors; therefore consistency in implementing the intervention is important. Also, when extinguishing a problem behavior, it is important that all those involved are aware of a possible extinction burst, so that a temporary rise in the problem behavior is not viewed as an ineffective intervention. Finally, it is important to teach the replacement behaviors at times when the disruptive behavior is not occurring. That is, teaching and practicing the replacement behavior when the individual is calm, and then subsequently prompting it in contexts where disruptive behavior occurs is recommended to minimize disruptive behavior. Once the individual has learned the functionally equivalent replacement behavior, durable decreases in disruptive behaviors are likely.
Cognitive behavioral therapy (CBT).
As mentioned previously, the frequent development or occurrence of comorbid disorders in adolescents with ASD has been increasingly discussed in the literature (Simonoff et al., 2008), and studies suggest that among verbal adolescents with autism, anxiety and depression are at high levels and are often a direct result of their social communication challenges (Koegel & LaZebnik, 2009). CBT, which is generally implemented by the school psychologist, can be helpful with comorbidity, but is generally more effective if the student has intact language skills, as most programs require dialog between the student and interventionist. As described by Fujii et al. (2013), when (p. 190) implementing a CBT program, the student generally provides detailed descriptions of when problems do and do not occur. For example, a hierarchy of feared situations may be described from the least to the most distressing. Students systematically work their way up through the hierarchy for gradual and systematic exposure to increasingly feared situations. This type of hierarchical exposure is generally combined with skill training, such as social conversation. In addition, the students are often taught to “rethink” the situation. For example, the interventionist may say to the student who does not socially interact, “If you offer to share your snacks with your friends, how might they feel about you?” Helping the student to rethink the situation can reduce self-imposed anxieties by creating an awareness of another person’s point of view, which is often challenging for individuals with ASD. For example, when entering a social situation, replacing thoughts such as “What if no one likes me?” with “People will enjoy being around me if I give them compliments and ask questions,” can lead to prosocial behavior and reduce anxiety. Often school CBT programs partner with parents (and teachers) to practice specific target areas and monitor progress across settings. Learning to change negative thoughts to positive thoughts, coupled with other programs, can reduce fears, anxieties, repetitive behaviors, and depression that result from difficulties with socialization. While more studies are important to determine the relative strength of various components used in CBT programs, there are some promising results suggesting that this may be a helpful intervention for adolescents with ASD in the schools.
While the implementation of many programs is necessary when areas need to be addressed after they have already become problems, antecedent interventions that prevent problem behaviors are preferable. Below we discuss several such interventions.
Students with ASD often spend their lunch and other free periods alone (Locke, Ishijima, Kasari, & London, 2010). Some of these students exhibit restricted interests that have developed into a large amount of accumulated information about a particular topic (Klin, Danovitch, Merz, & Volkmar, 2007), and they spend virtually all their free time engaged in related activities. In the past, it appeared as if there were a dilemma between choosing to let these students remain isolated and involved in the restricted interest, or to not allow the restricted interest behaviors to occur, and then have problem behaviors when they are removed or redirected from this very reinforcing activity. However, recent research has shown that using these restricted interests as the theme of social clubs results in improved verbal and social interactions among adolescents (Koegel, Fredeen, Koegel, & Lin, 2011; Koegel, Kim, Schwartzman, & Koegel, 2013), without the occurrence of problem behaviors. Specifically, the highly focused interest of the adolescent with autism is assessed through student, teacher, and/or parent interviews, and activities are then developed that incorporate the particular (p. 191) interest into a group activity that is engaging for both the student with ASD and typically developing peers. The data show that these clubs can provide a context for adolescents with ASD to feel socially confident and come to be viewed as a valued club member because of their expertise on the club theme (Koegel et al., 2011; Koegel et al., 2013). In addition, these interactions can provide a common ground upon which friendships can be formed with typically developing peers who share related interests (Feld, 1982; Cohen, 1977). Furthermore, their peers have a context for positive interactions with the adolescent with ASD, which, in this context, helps prevent bullying and teasing. Research also shows that if a similar club exists on the middle or high school campus, these gains are maintained, even after the specialized intervention has concluded (Koegel et al., 2013). Again, these clubs have the potential to benefit all of the students while improving peer socialization and mental health.
Priming, or previewing activities before they occur in daily life, has been shown to reduce behavior problems and improve academic and social behavior. For example, exposing adolescents to academic material at home the evening before it is presented in class reduces disruptive behavior and improves academic responding (Koegel, Koegel, Frea, & Green-Hopkins, 2003). In addition, priming for social activities has been very effective in improving peer interaction during recess in elementary school students (Gengoux, 2009) and should also be helpful for adolescents. This can be accomplished with priming of greetings, question asking, and enjoyable games and activities. Theoretically, priming these activities in a pleasant context before they are likely to arise in natural settings will decrease avoidance and escape-motivated behavior, thereby improving engagement with peers. While information relating to the specific way in which the priming is presented has not been well researched, the general procedure recommends that the materials or activities be presented with a calm and nondemanding demeanor. This may result in not only producing some degree of competency in the activity, but also in reducing any negative aspect to the activity so that it is not likely to be avoided. Priming can be implemented by school staff (speech-language pathologist, teacher, resource specialist, psychologist, paraprofessional, etc.) during after school programs, or in the evening by the parents.
The use of peers to assist in the intervention process is efficient and provides increased social interactions between students with disabilities and their typical peers. Harper, Simon, and Frea (2008) investigated the effectiveness of training peers to implement motivational components of Pivotal Response Treatment (PRT) during recess in order to improve social play during indoor (e.g., beanbag toss, ring toss) and outdoor (e.g., jump rope, basketball, swings) sport activities. The authors found that the peers were able to implement motivational components of PRT with high fidelity when working with students with ASD, and consequently the students were able to improve their respective social goals. Kasari, Rotheram-Fuller, Locke, and Gulsrud (2012) compared two different intervention approaches: peer-mediated intervention, in which peers led social activities, and another approach in which adults instructed students with ASD on how to socially interact with peers. The authors found that (p. 192) the peer-mediated approach led to a greater improvement in the student with ASD’s social network salience, number of friendship nominations, teacher report of social skills in the classroom, and decreased isolation during outdoor periods as compared to the student-assisted approach. Similarly, Shukla, Kennedy, and Cushing (1999) investigated the effectiveness of using peer-mediated intervention approaches in order to improve social interactions for students with severe disabilities in junior high school. Similar to Harper et al. (2008) and Kasari et al. (2012), these authors found that peers were able to provide appropriate social support, which resulted in more frequent and longer social interactions between students with severe disabilities and typically developing peers. While many of the peer intervention studies have been implemented with younger students, several studies have shown that peers can be a great support system and can readily and easily learn procedures to assist with adolescents with ASD (Haring & Breen, 1992). These studies suggest that properly trained peers can be a viable alternative resource to paraprofessionals for helping students with ASD. Additional research in using typically developing peers as adjuncts in the habilitation process will undoubtedly be areas of future exploration.
Service Delivery Issues
Proper training and data collection are critical, as interventions that are not implemented correctly are at minimum ineffective, and may even worsen behavior issues. Furthermore, without systematic and frequent data collection, programs cannot be adjusted accordingly. As mentioned above, paraprofessionals often spend the most time with students with ASD, and there has been some positive movement toward the development of appropriate training for effectively utilizing paraprofessionals in schools. Paraprofessionals can learn to implement EBTs, and monitoring of students’ skills, as well as their responsiveness to the intervention, is critical. For example, Quilty (2007) showed that after a short training, paraprofessionals were able to effectively write and implement Social Stories with preadolescents, which resulted in a decrease in the students’ disruptive behavior. Other studies have shown that paraprofessionals can be effectively trained to provide and facilitate appropriate social interactions between students with disabilities and their typically developing peers (Causton-Theoharis & Malmgren, 2005; Licciardello, Harchik, & Luiselli, 2008; Mazurik-Charles & Stefanou, 2010; Storey, Smith, & Strain, 1993). Other researchers have trained paraprofessionals to implement a combination of behavioral interventions such as Pivotal Response Treatment (PRT), Discrete Trial Teaching (DTT), and Picture Exchange Communication System (PECS) (Hall, Grundon, Pope, & Romero, 2010). Training consisted of attending a workshop and subsequent ongoing performance feedback from a supervising teacher or specialist to effectively implement targeted goals. Bolton and Mayer (2008) taught paraprofessionals to use a behavior intervention approach, which consisted of a didactic instructional model, demonstration, general case instruction, and practice with (p. 193) feedback. The authors found that, after the training, the paraprofessionals were able to accurately implement behavioral procedures and could generalize their newly acquired skills across settings.
Robinson (2011) used a different approach when training paraprofessionals to implement the motivational procedures of PRT (e.g., child choice, shared control, clear opportunities, and natural/contingent reinforcement) to improve social interaction between students with ASD and typically developing peers. While previous paraprofessional training studies had taught these school personnel via live feedback, this study trained the paraprofessionals via video feedback. That is, paraprofessionals videotaped themselves and later met with a specialist to discuss their implementation of the procedures. As a result, the paraprofessionals’ implementation of PRT increased while their hovering and/or lack of involvement with their assigned student decreased. In addition, the students all made positive gains on their individualized target goals and demonstrated either maintained or improved affect. The study found large and rapid improvement in paraprofessionals’ performance, and the author noted that this fast learning curve might be a result of the offsite feedback provided to the professionals while they were working with students in their natural environment (which were videotaped). As technology becomes more readily available, exploring the use of training paraprofessionals via video feedback is highly warranted, as it is both time- and cost-efficient, as opposed to having a specialist provide in vivo feedback, which can be very time-consuming. The use of video technology will likely receive attention in future research.
Although these studies have successfully demonstrated that paraprofessionals can be trained to implement the various intervention strategies with high fidelity of implementation, there is still a need for the development of a more unified comprehensive training model (Blalock, 1991; Causton-Theoharis, Giangreco, Doyle, & Vadasy, 2007; Giangreco & Doyle, 2002). Some have suggested four interrelated best-practice categories when working with paraprofessionals (Causton-Theoharis et al., 2007). The first category relates to welcoming and acknowledging paraprofessionals, such as introducing the paraprofessional as part of the teaching team. The second relates to orienting the paraprofessionals to the school by giving them a tour and reviewing the school policies and expectations. The third category relates to planning for paraprofessionals’ weekly schedules, and the last category involves regular and ongoing communication with paraprofessionals. In this last category, the authors recommend clarifying the paraprofessionals’ roles and responsibilities and developing a standard communication method. Other recommendations include using paraprofessionals for supplemental support, training paraprofessionals explicitly and extensively in behavior management, and providing ongoing feedback. Blalock (1991) emphasized the importance of clearly outlining the paraprofessionals’ roles and responsibilities, meeting on a regular basis, and acknowledging paraprofessionals’ contributions to the students’ progress. A comprehensive model involving all of these areas is likely to decrease the common problem of attrition and burnout by making the paraprofessional feel welcome and part of a team, as well as improving the training, monitoring, and feedback provided to the paraprofessional.
(p. 194) In addition to the influx of students with disabilities into the public school system, schools are becoming more ethnically and linguistically diverse (Aud et al., 2012; Ford, 2012), and researchers have begun investigating the effectiveness of traditional intervention approaches with multicultural students with ASD (Wilder, Dyches, Okiakor, & Algozzine, 2004). To make the educational experience more meaningful for students with disabilities from diverse cultural backgrounds, it is helpful to understand key aspects of ecocultural theory. From an ecocultural perspective, culture plays a pivotal role in a student’s development (Weisner, 2002). Ecocultural theory states that it is important to take the family’s perspective into account when developing goals and agendas (Bernheimer, Gallimore, & Weisner, 1990; Gallimore, Weisner, Kaufman, & Bernheimer, 1989). According to Bernheimer et al. (1990), there are several key components involved. First, ecocultural theory requires understanding the student’s disability as it is perceived by the student’s family (in terms of the family’s values, goals, and needs). Second, an important unit of analysis in ecocultural theory is the family’s daily routines, as these routines mediate the ecocultural effects of interactions with other pertinent individuals. Another aspect of ecocultural theory is the applicability to families of all cultures. Ecocultural theory also posits that a student’s outcomes should be meaningful as they relate to the family’s values and beliefs, congruent to the student’s characteristics, and sustainable across conditions. Because students with ASD respond best when a consistent and comprehensive intervention is implemented across settings, a necessary part of the intervention is the inclusion of families. To do this, careful consideration of the cultural values and practices in everyday life is critical. In regard to cultural considerations at the school site, researchers have recently begun to investigate how key components of ecocultural theory are being incorporated in practice by paraprofessionals in the school setting.
For example, Chopra, Sandoval-Lucero, Aragon, De Balderas, and Carroll (2004) assessed whether paraprofessionals served as connectors between the home and school environment. They conducted focus group interviews with 49 paraprofessionals who worked with a diverse population of students, including students with disabilities, and asked them about their relationships with students and their families, and about their roles in representing the community to the school and vice versa. The researchers found that, in general, paraprofessionals had closer relationships with families from diverse cultural and ethnic backgrounds than teachers did. They also noted that, in most cases, parents felt more comfortable communicating with paraprofessionals, because they were more available than teachers, often spoke the same foreign language, and occasionally even lived in the same neighborhood. In some cases, paraprofessionals reported that parents relied on them for help outside of the school setting, such as to obtain information about the community and resources available to their child. The authors also found that when paraprofessionals share a similar cultural background with the students with whom they work, they are able to provide cultural and linguistic continuity for these students.
Similarly, Ernst-Slavit and Wenger (2006) investigated how paraprofessionals play a pivotal role in educating minority students and how these school personnel (p. 195) can help reveal the “funds of knowledge” of these students. The study found that when paraprofessionals share similar cultural and ethnic backgrounds with the minority students, they are better able to understand the educational difficulties that these students encounter. These may include problems such as dealing with racist comments, absences, or relevant multicultural literature that may be more motivating to minority students. The authors also suggest that when the paraprofessionals and the minority students share similar backgrounds, they are in a unique position to make the educational experience more meaningful and are perhaps more capable of incorporating culturally relevant pedagogy when working with these diverse students.
Although schools have historically tended to hire culturally diverse paraprofessionals in order to better serve minority students, schools do not utilize these paraprofessionals to gain access to students’ cultural and community knowledge so that they can develop a culturally based education for these students (Ernst-Slavit & Wenger, 2006; Rueda & Monzo, 2002). While the majority of research on multiculturalism has focused on English language learners (ELLs), the National Research Council (2001) urges service providers of students with ASD to be culturally sensitive, and suggests a need for further research investigating culturally and ethnically diverse students with ASD. For example, in many Asian cultures it is common for students to avoid making eye contact with an adult and to silently respond to a teacher’s question (Lian, 1996), and these areas are often targeted for intervention. This example emphasizes the importance of having school personnel consider cultural variables when classifying and developing IEP goals for ethnically and culturally diverse students with ASD. Similarly, Welterlin and LaRue (2007) published an article about the importance of incorporating key aspects of ecocultural theory when developing treatment plans for immigrant families of students with ASD. As the educational and treatment approaches used in America mainly reflect one ideology, educators and service providers who work with culturally and ethnically diverse students with ASD need to be open to different ideologies and beliefs about effective intervention approaches. Educators who share a similar ethnic and cultural background with diverse families may be ideal candidates for educating these families about accepted evidence-based interventions, since they are in a unique position to reference shared cultural values.
Service Delivery Models for ASD
Adolescents with ASD need comprehensive intervention plans that include social, academic, and behavioral goals that are combined with their families’ beliefs and values so that seamless, coordinated, and consistent interventions can be implemented. Thus, given the current state of knowledge, an ideal service delivery model would include, at minimum, the following components:
1. Appropriate diagnosis. The changing DSM criteria for ASD may mean that some adolescents who would greatly benefit from intervention no (p. 196) longer qualify for services (McPartland, Reichow, & Volkmar, 2012). School personnel need to be especially vigilant in identifying adolescents that would benefit from social interventions. Such interventions are likely to decrease comorbid difficulties that could potentially result in serious long-term challenges. This requires assessment beyond the traditional in-office standardized testing, such as the use of behavioral observations in natural settings, sharing of information with parents and significant others, and consideration of how the adolescent interacts within the peer network.
2. Training. Ongoing training of regular and special education teachers, specialists, paraprofessionals, and others who interact with the student is critical (Koegel & LaZebnik, 2004, 2014). Studies repeatedly show that there is inadequate training both at the preservice and the school level. Once teachers and school specialists are properly trained to implement EBPs, they need to learn how to provide appropriate instruction to paraprofessionals. Without this training, it is unlikely that adolescents with ASD will receive suitable and effective interventions.
3. Peer training and recruitment. There is often a disconnect between adolescents with ASD and their typical peers. Consequently, high levels of bullying and victimization occur. Typical peers should be both trained in regard to symptoms of ASD and recruited to assist with interventions and serve as positive role models. When recruiting the typical peers, it is important to carefully select the peers to create more stable and salient relationships and higher friendship qualities (Locke, Rotheram-Fuller, & Kasari, 2012). Recruiting and systematically training typically developing peers can provide a cost-effective intervention and improve the skills and quality of life for the adolescent with ASD.
4. Evidence-based interventions and data collection. Tragically, effective interventions are not regularly implemented with adolescents with ASD in the schools (cf. Simpson, 2005). The research contains many effective and appropriate interventions for adolescents that can be used to reduce and prevent unwanted behaviors and encourage prosocial behaviors. Additionally, many effective interventions for younger students can be helpful with older students (cf. National Autism Center, 2009; National Research Council, 2001). Data collection at regular intervals is important to assess the adolescent’s response to intervention and to make programmatic adjustments when necessary.
5. Coordinated, consistent, and comprehensive programs. There is no single intervention program that completely eliminates the core symptoms of ASD or disruptive behavior, so it is critical that adolescents receive a combination of programs implemented simultaneously. For maximal benefit, programs should be consistent across individuals with whom the adolescent interacts and across settings. Programs that are inconsistently or incorrectly implemented may result in an increase in unwanted behaviors (Koegel, Egel, & Williams, 1980). Careful and precise (p. 197) implementation of interventions across all settings will yield the best outcomes.
6. Cultural and individual considerations. Considering the individual’s specific learning style and cultural variables that may influence the implementation of goals, as well as the acceptability of goals and intervention programs, is important. Whenever possible, using staff with similar cultural backgrounds helps bridge that gap.
In conclusion, conflict is minimized when clear goals are developed with the family and appropriate and effective interventions are implemented to address those goals with competent school staff ( Etscheidt, 2005). The literature is consistent in stating that proper training with empirically validated models and comprehensive programming will provide the greatest outcomes for adolescents with ASD.
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