Chapter 14 Susan W. White, Nicole L. Kreiser, and Matthew D. Lerner Autism spectrum disorder (ASD) is a neurodevelopmental disability encompassing a group of childhood-onset syndromes that share a severe disability in social interaction. In the fourth edition, text revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) (American Psychiatric Association [APA], 2000), ASD comprised distinct diagnostic entities, notably autistic disorder, Asperger’s disorder, and pervasive developmental disorder—not otherwise specified. Although considerable debate persists about the scientific merit of grouping versus separating the specific disorders, in the latest revision of the DSM (DSM-5) (APA, 2013) this subcategorization is replaced with the umbrella diagnostic category. The spectrum disorders are no longer regarded as rare, nor is identification of ASD restricted to children. Approximately 1 in 88 children meet criteria for an ASD diagnosis (U.S. Centers for Disease Control and Prevention [CDC], 2012). Of this population of approximately 831,507 children with a diagnosis of ASD nationwide (based on a U.S. Census Bureau 2010 report), an estimated 62% are not cognitively impaired (CDC, 2012). Moreover, ASD is a chronic condition; although symptoms often wax and wane over the course of development (Cederlund, Hagberg, Billstedt, Gillberg, & Gillberg, 2008; Howlin, Goode, Hutton, & Rutter, 2004), the diagnosis typically persists through adulthood (Farley et al., 2009). Although children usually are identified by age 5 (CDC, 2012), diagnosis can and often does occur much later (White, Ollendick, & Bray, 2011), especially for individuals who have few or no low-threshold symptoms (i.e., behaviors that are highly atypical and hallmark characteristic of diagnosis, such as stereotyped language) and who are cognitively higher functioning (or at least without co-occurring intellectual disability [ID]. Given the growing population of young people with ASD diagnoses who do not have co-occurring ID and who usually are educated in regular education (i.e., mainstream) classrooms, the focus of this chapter is treatment approaches for those children who are without ID. Treatment of a client with ASD is usually multifaceted. Unlike many Axis I disorders, the symptom(s) that are diagnostic of ASD often are not the focus of intervention, at least initially (Joshi et al., 2010). For example, a child with ASD may be referred for treatment due to problems with aggression, self-injury, anxiety, or academic difficulties. Moreover, the range of presenting problems is diverse. Although treatment for core symptoms, such as social disability, is often sought, it is typical that other problems are present and uniquely, acutely impairing in the child’s life. Effectively reducing co-occurring symptoms (e.g., anxiety) can, in some cases, motivate the child to persist in treatment, contribute directly or indirectly to change in more pervasive or chronic symptoms, and reduce impairment. The heterogeneity in both symptom profile and treatment needs is also important to bear in mind with respect to discussions of evidence-based treatments (EBTs) for children with ASD. What is effective for a minimally verbal 4-year-old, for instance, is often inappropriate and ineffective for a highly verbal adolescent, although these two children share the same diagnosis. Given the goal of this volume (i.e., to provide practical, usable information on evidence-based intervention practices), its anticipated consumers (psychologists in practice or training), and the targeted client group (school-age children and adolescents who are without co-occurring ID), we provide information on many of the best-supported treatments based on the extant literature to date. However, there are many treatment options with varying degrees of empirical support and treatments that, although often provided to young people on the spectrum, are not typically delivered by clinical or school psychologists. To balance breadth of coverage with adequate depth and detail, we have opted to cover treatments that are evidence based and promising in terms of efficacy for the most commonly seen clinical referral issues for children and adolescents with ASD. This includes intervention approaches for core (i.e., diagnostic of ASD) and secondary (i.e., problems that frequently co-occur in ASD) symptoms separately. No specific treatments have been developed for children with ASD that meet the criteria for “empirically validated” treatments, as initially established by the 1995 report from the Society of Clinical Psychology, Task Force on Promotion and Dissemination of Psychological Treatment Procedures. Many, however, likely meet the criteria for “probably efficacious.” Notably, Lovaas’s Applied Behavior Analysis (ABA) intervention approach, Discrete Trial Training (Lovaas, 1987), was the only treatment determined to be probably efficacious in a review of research on comprehensive treatments for young children with ASD (Rogers & Vismara, 2008). Fortunately, tremendous progress has been made in the field of psychosocial intervention research for ASD in the past 5 years. This body of research is developing rapidly, and the challenges native to this stage of treatment discovery and evaluation (e.g., accruing sufficient size samples to thoroughly assess efficacy, much less moderators and mediators of response, and application of sensitive and valid measures of change) are numerous. Nonetheless, there are many excellent resources on evidence-based intervention practices for ASD, a full review of which is beyond the scope of this chapter. The National Autism Center (NAC; 2009) has developed empirically informed guidelines for treatment of ASD in the schools, dividing approaches into those that are “emerging” (22 treatments identified as such) and those that are “established” (11 treatments identified as such; e.g., antecedent packages, modeling). The treatment approaches outlined by the NAC are probably best viewed as components of more comprehensive educational and clinical curricula rather than stand-alone interventions. More recently, the National Professional Development Center on ASD (Wong et al., 2014) has identified 27 evidence-based practices, defined as those to be shown effective through high-quality scientific research. There is a lack of consistency in findings across resources, largely owing to use of different systems, or metrics, with which to judge the relative merit of the scientific base. The Handbook of Autism and Pervasive Developmental Disorders (Volkmar, Paul, Klin, & Cohen, 2005) and the Encyclopedia of Autism Spectrum Disorders (Volkmar, 2013) are also valuable resources (both of which are to have new editions published in the coming year), offering summaries of empirically based interventions and critical analyses of the extant research. It should also be noted that ABA is the most empirically supported treatment for the core speech and communication deficits of ASD. Intensive ABA programming typically is delivered by board-certified behavior analysts with specialized training in ASD. For children under 4 years of age with ASD, intensive (up to 40 hours per week) is typically the principal recommendation (e.g., Eikeseth, Smith, Jahr, & Eldevik, 2007; Harris & Handleman, 2000; National Research Council, 2001). Without question, treatments based on the principles of ABA (e.g., Lovaas, 2003) continue to be the foundation of most psychosocial interventions for children with ASD. This is particularly true for clients with ID and those who are younger (i.e., under 7 years). Although older children and adolescents can learn from ABA approaches, evidence indicates that the long-term impact is greatest for very young children (Smith, 2010). ABA-based interventions are based in the principles of operant conditioning (Skinner, 1938), such as prompting and reinforcing specific targeted skills. Many of the treatment approaches described in this chapter incorporate aspects of ABA, but we do not describe or explain the Discrete Trial Training approach that is often core to ABA programs for young children with ASD. We instead focus on interventions typically delivered in clinical settings by counselors and psychologists. The hallmark characteristic of ASD is pervasive social disability (APA, 2000), and social skills instruction often is used to improve general social competence in children with ASD. Although interventions to improve social functioning in youth with ASD generally have demonstrated promising results (Reichow & Volkmar, 2010; Wang & Spillane, 2009), the evidence has not been consistently strong, and common methodological limitations (e.g., primarily parent-report measures and use of wait-list comparison conditions) have hampered comparative evaluation. However, many intervention models target social disability in ASD and have an emerging base of empirical support, including ABA-based behavior modification, peer as interventionist and tutor models, social stories, computer-based training games, and video modeling, many of which we discuss later. Resources also are available on how to design individualized programming to address the social problems of children with ASD (e.g., White, 2011). Social skills training in a group format is perhaps the most common psychosocial intervention; many commercially available curricula have been developed specifically for young people with ASD (e.g., Baker, 2003; Bellini, 2008; McAfee, 2002). The Program for the Education and Enrichment of Relationship Skills (PEERS) (Laugeson & Frankel, 2010) is perhaps the best-studied specific group treatment package. PEERS is a manualized social skills training intervention developed for adolescents with ASD. Two randomized clinical trials of PEERS have yielded large between-group effects on parent-reported social skills (Laugeson, Frankel, Gantman, Dillon, & Mogil, 2011; Laugeson, Frankel, Mogil, & Dillon, 2009), leading the National Institute for Clinical Excellence to give the PEERS protocol its highest level of recognition as an empirically supported treatment for ASD. Although research on the PEERS program is highly promising, the Skillstreaming approach (Goldstein & McGinnis, 1997; McGinnis & Goldstein, 1997) is arguably the most widely used in this literature and has been successfully adapted for children with ASD (e.g., Lopata et al., 2011). Shared elements, considered promising components of effective skills training across programs, include consistency in delivery and structure (e.g., a similar sequence of activities and context), direct and immediate feedback to the children, and integration of strategies to promote skill generalization (White, Koenig, & Scahill, 2007). Emerging research supports an additional set of promising components of group social skills training. While PEERS and related models (see Stichter et al., 2010; DeRosier, Swick, Davis, McMillen, & Matthews, 2010) focus on increasing discrete skills through first providing didactic instruction, this alternative set tends to focus on in vivo learning and performance training approaches (Lerner, McMahon, & Britton, 2014; Lerner, Mikami, & Levine, 2011), and there is evidence that such approaches may yield faster improvement in peer functioning relative to didactic approaches (Lerner & Mikami, 2012). There are many approaches other than traditional group-based or individually delivered social skills training. Peer-mediated interventions involve peers of the child with ASD who are the direct recipients of training to indirectly improve social competence in the identified youth. This training often is conducted with students in mainstream classes, such that effects on socialization are indirect, via social engagement with the trained peer. Recent research indicates that peer-mediated interventions may be superior to interventions that solely target skill development in children with ASD (Kasari, Rotheram-Fuller, Locke, & Gulsrud, 2012), highlighting the importance of training typically developing youth to be supportive and open to peers who have ASD. Video modeling interventions, which provide a visual model of the targeted behavior, also have shown promise in extant research (Charlop-Christy, Le, & Freeman, 2000; Nicopoulos & Keenan, 2004). The model may be the targeted child him- or herself (the client videotaped while using a specific skill) or a peer or sibling. Skills such as conversational speech, perspective taking, and specific social skills to be used in new situations lend themselves easily to this approach. Social Stories, developed by Carol Gray (1998), often are useful in teaching about age-appropriate social behavior and expectations (Rogers & Smith-Myles, 2001). These stories are individualized and used to teach and explain social concepts or situations as well as provide suggestions for what to do in that situation. Computer-based intervention (CBI) is gaining popularity as an approach to remediate specific processes believed to underlie social disability in ASD, such as deficient emotion recognition and regulation. Several promising CBI programs are available, including The Transporters (Golan et al., 2010), an animation series centered around vehicles that demonstrate human emotions; FaceSay (Symbionica), which utilizes realistic avatars to “interact” with users to increase attention toward socially salient features of the face (Hopkins et al., 2011); Let’s Face It! (Tanaka et al., 2010), a set of interactive computer games to address face-processing deficits; and the Secret Agent Society (Beaumont, 2009; Beaumont & Sofronoff, 2008), which uses an interactive computer game to teach emotion recognition and regulation skills along with weekly group training sessions. Such approaches have pragmatic benefits, such as transportability (e.g., can be done at home or school), a decreased reliance on therapists, and flexible implementation—all of which may promote a higher treatment “dose” (e.g., the child can be “treated” multiple times weekly or daily). Among children with ASD, moreover, technology is often a particular area of interest. For that reason, these young clients may find CBI more intrinsically interesting and motivating than traditional interpersonal therapies. In a meta-analysis of studies on CBI for individuals with ASD, Ramdoss and colleagues (2012) found considerable range in effect sizes and concluded that further research is needed to determine if CBI can be considered an effective intervention. Regardless, such an approach may be preferred by some children with ASD and may be a useful component of more traditional, face-to-face interventions. In conclusion, intervention research in this area generally has demonstrated promising, though far from unequivocal, results. In a meta-analysis on the efficacy of school-based social interventions, Bellini, Peters, Benner, and Hopf (2007) reported that the evaluated social skills interventions were minimally effective for most students with ASD. Wang and Spillane (2009), in their meta-analysis, concluded that video modeling was an evidence-based and effective intervention for children with ASD, whereas Social Stories (Gray, 2000) and peer-mediated approaches were found to be less effective. Reichow and Volkmar (2010), in their review, determined that social skills groups could be considered an established, evidence-based intervention, while video modeling is promising. Clearly, there is emerging support for multiple forms of intervention, but the strength of the evidence is quite variable. Anxiety is a common co-occurring problem (White, Oswald, Ollendick, & Scahill, 2009), affecting approximately 40% of children and adolescents with ASD (van Steensel, Bogels, & Perrin, 2011). When present, anxiety appears to exacerbate core ASD impairments (Chang, Quan, & Wood, 2012). Several recent clinical trials have indicated that cognitive behavior therapy (CBT) is likely to be effective in reducing symptoms of anxiety (Chalfant et al., 2007; Reaven et al., 2009; Sofronoff, Attwood, & Hinton, 2005; White et al., 2012; Wood et al., 2009). Most such programs have been delivered in a group format, and each program either has been modified from existing programs for youth with ASD or has been developed specifically for children and adolescents with ASD. As several investigators (e.g., Puleo & Kendall, 2011; White, Scarpa, & Attwood, 2013) have observed, however, the clinical need for such adaptations and the merits they afford to eventual treatment outcome have yet to be empirically examined. Although more treatment research has been afforded to anxiety in young people with ASD, depression is also a common co-occurring problem in this population (Ghaziuddin, Ghaziuddin, & Greden, 2002), affecting approximately 40% of adolescents with diagnosed ASD (Lopata et al., 2010). Yet we know of no studies that have examined the use of CBT for treating depression in youth ASD. Since CBT has promise for the reduction of emotional and behavioral difficulties related to anxiety and anger in ASD, it seems plausible that it also can help with depressive symptomatology. Aggression and irritability are common among children with ASD. Because aggression can be severe and can have considerable adverse impacts on family life, functioning in school, and skill development, it is often the primary reason for treatment referral (Johnson et al., 2007). Aggression and severe irritability usually are treated with psychotropic agents, notably atypical antipsychotics (Robb, 2010). Combined pharmacologic and behavioral treatment, however, may be the most effective approach for decreasing severity of aggressive behavior among children with ASD (Frazier et al., 2010). With respect to psychosocial treatment for these behavior problems in children with ASD, the standard treatment approach employs ABA with functional assessment to identify the factors that maintain or exacerbate the behaviors (Matson, 2009). Some such programs have been assembled into treatment manuals. Johnson and colleagues (2007) developed a behavioral parent-training program, based on ABA principles and integrating functional assessment, to treat noncompliance, irritability, and aggression in children with ASD. The treatment was able to be delivered consistently across therapists and clients (therapist integrity across multiple treatment sites), and parents reported being highly satisfied with the intervention (Research Units on Pediatric Psychopharmacology Autism Network, 2007). Feeding difficulties, such as sensitivity to food textures, food selectivity, and food refusal, are prevalent among children with ASD, with approximately 60% exhibiting feeding issues (Kerwin, Eicher, & Gelsinger, 2005; Williams, Dalyrmple, & Neal, 2000). If left untreated, such difficulties can result in poor nutrition and other challenging behaviors (e.g., aggression associated with food refusal) (Matson & Fodstad, 2009). Feeding difficulties in children with ASD may stem from a variety of sources, including biological factors and manifestation of ASD symptomology (e.g., cognitive inflexibility, insistence on sameness) (Twachtman-Reilly, Amaral, & Zebrowski, 2008). ABA has been the preferred treatment modality in most types of feeding difficulties (Matson & Fodstad, 2009). Results of single-case studies utilizing behavioral approaches such as behavioral momentum (i.e., requesting desired behavior after trials of high probability compliance tasks) (Patel et al., 2007), differential reinforcement plus response cost (Buckley, Strunck, & Newchok, 2005), positive reinforcement of nonpreferred foods (Luiselli, Ricciardi, & Gilligan, 2005), and pairing nonpreferred foods with preferred foods (Najdowski, Wallace, Doney, & Ghezzi, 2003) have been promising. However, such strategies have not been well examined or compared. Self-injurious behavior (SIB) has been conceptualized as a form of repetitive behavior in children with ASD, and some of the most common forms of SIB involve head hitting, hand biting, and skin rubbing (Canitano, 2006; Matson & LoVullo, 2008). However, recent evidence indicates that, among higher-functioning adolescents with ASD, nonsuicidal self-injury is not associated with repetitive or stereotyped behaviors but rather with depression (Maddox & White, 2012). Pharmacological treatment, often with antipsychotic medications such as risperidone, is the most common approach to treating SIB (Canitano, 2006; Matson & LoVullo, 2008). Variants of behavioral modification (e.g., functional assessment, positive reinforcement) also have been employed to target such symptoms, although few efforts have been made to tailor treatment approaches specifically to address SIB and most research in this area has been conducted with individuals who have co-occurring intellectual impairment (Matson & LoVullo, 2008). Although only a handful of reports are available, suicidality has been noted as a problem among some individuals with ASD (Raja, Azzoni, & Frustaci, 2011). In one study, ASD was overrepresented in a sample of adolescents who attempted suicide and were hospitalized (Mikami et al., 2009). It has been hypothesized that factors such as being male, the presence of psychotic symptoms, and pervasive obsessive traits (suggesting a higher degree of planning) are associated with increased suicide completion in people with ASD (Raja et al., 2011). It is also of note that recognizing suicide risk in this population may be quite challenging, given that symptoms typically suggestive of suicide risk may be masked by ASD symptoms (e.g., social withdrawal, inappropriate or bizarre behaviors, negative symptoms). Thus, in working with this population, risk of suicidality should be frequently and explicitly assessed for, even in the absence of typical signs or risk factors related to suicidality (Raja et al., 2011). Perhaps just as important as having knowledge of evidence-based and empirically supported interventions for children with ASD is recognizing interventions that are unvalidated and sometimes contraindicated (Lilienfeld, 2007; Smith, 2008). ASD has been described as a “fad magnet” for such treatments (Metz, Mulick, & Butter, 2005), and multiple, widely available treatments simply do not have evidence to support their use clinically (e.g., auditory integration training, bonding therapies, special or restricted diets). This is especially important for clinicians who do not necessarily specialize in treating families affected by ASD. While it is impossible to stay abreast of all new, or even available, treatments for all conditions, especially given the prevalence and proliferation of so many alternative and unvalidated treatments, we recommend that therapists beginning treatment for individuals with ASD avail themselves of current literature to aid families in using caution when considering such treatments. Parental involvement is important for promoting the child’s learning across a range of situations (behavior generalization) and to provide consistent interactions (e.g., response to tantrums), regardless of whether the therapist is present (Matson, Mahan, & Matson, 2009). Parental roles in interventions have included the parent as cotherapist, parent as coach, and less intensive forms of involvement including the provision of psychoeducation and parental support. Despite the noted importance of parental involvement, the specific features of parental involvement that may augment treatment response are largely unexplored.
Autism Spectrum Disorders
BRIEF OVERVIEW OF AUTISM SPECTRUM DISORDERS
EVIDENCE-BASED APPROACHES
Social Disability
Anxiety and Mood Problems
Aggression and Externalizing Behaviors
Feeding Difficulties
Self-Injury/Suicidality
Alternative and Untested Treatments
PARENTAL INVOLVEMENT IN TREATMENT