News and Knowledge

Despite reports that outcome in individuals with autism spectrum disorders may be improving following early intensive interventions, we still have much to learn about the natural history of the disorders and the effects of intervention. While there may not yet be a known cure for autism, a number of viable (although not always easily accessible and affordable) treatment options are available. The primary therapeutic approaches are non-pharmacological treatments that include applications of behavior analysis (e.g., Koegel, Koegel, and McNerney, 2001; Lovaas and Smith, 1989; McEachin, Smith, and Lovaas, 1993; Schreibman, 2000; Sundberg and Michael, 2001), developmental theory (Wieder and Greenspan, 2003), structured teaching (e.g., Panerai, Ferrante and Caputo, 1997; Panerai, Ferrante, and Zingale, 2002), and various ancillary therapies. There is limited empirical support documenting that any of these approaches has an impact on the core social-communication disturbance in autism, with the possible exception of an emerging literature on joint attention as a behavioral intervention target (e.g., Jones and Carr, 2004; Whalen and Schreibman, 2003; Whalen, Schreibman, and Ingersoll, 2006).

The role of pharmacological interventions is best thought of as adjunctive and is typically limited to treating specific symptoms (not core social-communication symptoms) that appear to be interfering with a child’s ability to learn or function within a particular environment. The question of whether or not we can cure autism needs to be discussed in terms of the need to overcome the as yet poorly understood fundamental disturbance in autism and to develop treatment protocols specifically targeting social deficits. At the present time, it is more appropriate to speak of our quest to understand autism than it is to speak of a cure.

Behavioral and Educational Interventions

Autism includes a heterogeneous group of people with behavioral deficits in social cognition, communication, and with a restricted range of interests and repetitive behaviors (Rapin and Katzman, 1998). A wide range of cognitive challenges and a variety of behaviors and medical conditions are known to be associated with the autism spectrum. Despite the complexity of this disorder, emerging data from neurobiological investigations suggest that we can identify specific networks that are crucial for social communication (Adolphs, Baron-Cohen, and Tranel, 2002; Grady and Keightley, 2002). The hope is that by identifying social deficits early we can implement behavioral and educational interventions that will address these core social challenges and also be specific enough to maximize each child’s potential. In the absence of a reliable biological marker for autism, understanding the determinants of prognosis and assessing the impact of interventions is a difficult undertaking. While a high degree of parental satisfaction with treatments appears to exist, instances of “recovery” are hard to document and the majority of children with autism require continued dependence on therapy and structured educational settings (Boyd and Corley, 2001). We will address aspects of this problem not by trying to determine if a cure for autism is a reasonable or achievable goal but instead by discussing what we know and what we need to learn about outcomes and interventions in children with autism spectrum disorders.

Numerous “psycho-educational” interventions have been described for use with individuals with autism spectrum disorders over the years, but few have been well-researched and validated. Nevertheless, these non-pharmacological educational approaches continue to be the primary treatments for autism spectrum disorders (Lord et al., 2001). While an expanding literature supports the utility of well-structured, highly engaging, intensive, individualized treatments for those affected by autism (Howlin, 1998; Lord et al., 2001), much remains to be learned about intervention in autism. Perhaps most importantly, there are typically large individual differences in response to treatment, the impact on core social-communication symptoms remains unclear, and little is known about which methods are best suited to specific individuals with autism spectrum disorders. Until the etiological and underlying neurobiological factors are more clearly elucidated and we become better informed about specific clinical subgroups, these challenges will remain.

Numerous specific interventions have been proposed since Kanner first identified autism in 1943. These varied approaches represent a range of intervention philosophies (i.e., behavioral, developmental, cognitive), and while they are typically presented as distinct, one is likely to observe notable similarities in the actual clinical application of the principles in real-world therapeutic settings. In fact, Dawson and Osterling (1997) have identified several critical common programmatic elements that may ultimately prove more important than any fundamental differences in “philosophy.” Included among these critical program elements are: scope and sequence of curriculum; supportive teaching environments with strategies and opportunities for generalization of skills; predictability and routines; functional approach to problem behavior; transition planning; and family involvement.

Pharmacotherapy

The use of medications in autism is typically limited to targeting specific symptoms that, although common in autism, may not be fundamental to the disorder (Arnold et al., 2003). This focused use of pharmacotherapy in autism is important, but what it means for the long-term outcome of those affected remains unclear (Buitelaar, 2003). For example, the use of antipsychotic medications for management of difficult behaviors and the use of anti-epileptic drugs to treat seizures are common practices in the clinical management of those with autism (Aman, Van Bourgondien, Wolford, and Sarphare, 1995), but their primary role in autism has not been established.

Despite successful uses of medications in autism to treat symptoms such as anxiety, obsessive-compulsive behaviors, aggression, impulsivity, and hyperactivity (Aman and Langworthy, 2000; Gilman and Tuchman, 1995; Santosh and Baird, 2001; Tsai, 1999), there are no reports of significant changes in the long-term outcome of children treated with medications relative to the social deficits that primarily define the disorder (Posey and McDougle, 2001). Furthermore, psychopharmacology in autism has several other critical limitations, as reviewed by Palermo and Curatolo (2004). Some of the concerns include the small number of subjects treated under controlled conditions, few double-blind studies, the lack of consistent replication, and the short duration of medication trials. In addition, reliable instruments to measure medication effects are not readily available, and there appears to be limited cooperation between the medical and educational communities in designing appropriate studies (Arnold, Aman, Martin, Collier-Crespin, Vitiello, Tierney, et al., 2000). Finally, the magnitude of improvement reported by investigators studying the effectiveness of medications on autism is of limited overall significance for the individual child. To date, few current studies allow us to determine the efficacy of medications, and evaluating pharmacotherapy efficacy in autism is further complicated by the differences in signs and symptoms that occur in autism at different developmental stages, the variability in response to medication, and the lack of clear end-points and specificity of the medications (Aman et al., 2004).

Predictors of Outcome

The most reliable predictors of outcome are level of intelligence and ability as measured by IQ and language tests (Nordin and Gillberg, 1998). While it seems apparent that outcomes vary widely, few long-term outcome studies are available, and those that are generally indicate a trend toward relatively poor outcomes for the majority of those affected by autism (Gillberg, 1991; Howlin, Goode, Hutton, and Rutter, 2004). Even those with high-functioning autism or Asperger Syndrome are frequently described as dependent adults who require rather extensive supports from their families and society (Engstrom, Ekstrom, and Emilsson, 2003).
The idea that long-term outcome in individuals with autism may be improving secondary to early intensive behavioral interventions is not without debate and continues to lack consistent empirical support (Howlin, 2003; Shea, 2004). While it appears from a clinical or anecdotal perspective that children with autism are benefiting from early identification and intensive intervention, there is limited evidence to support the idea that children with autism who respond to treatment with improvements in language, IQ, achievement, and adaptive functioning (e.g., Harris, Handleman, Gordon, Kristoff, and Fuentes, 1991; Lovaas, 1987; McEachin, Smith, and Lovaas, 1993; Sallows and Graupner, 2005) are less symptomatic with respect to the core deficits of autism. We still have much to learn regarding the natural history of autism, the predictors of outcome, and the types of interventions that can yield a positive effect on outcomes related to the core disturbance in autism.

Summary

Successful psychoeducational intervention programs appear to share a number of common elements such as high intensity, engagement, structure, and family involvement; the philosophical approach guiding the interventions may ultimately prove less important than the presence of these common elements. Medications are best used to treat specific behaviors or a specific medical condition, such as clinical seizures, that interfere with an individual’s life or with the integration of an individual within a family or community.

Although we have certainly come a long way in determining what constitutes generally effective instructional practices and rational pharmacotherapy, we have much to learn about the fundamental deficit in autism and how to target our interventions to change the social deficit that is at the core of autism. There remains significant disagreement among professionals about what constitutes “best practices”—those interventions which maximize an individual’s potential and lead to successful outcome (Goldstein, 2002; Koegel, 2000; McConnell, 2002; Rogers, 2000). What research has demonstrated in terms of effective practices does not always widely translate to clinical settings; “best practice” is not necessarily “common practice.” Finally, there remains a lack of specificity in autism intervention. An elucidation of autism clinical subtypes, including biological markers, is clearly warranted. The types of intervention and potential neurobiological factors that may predict successful outcome need to be further clarified (Howlin, 1997; Kasari, 2002; Wolery and Garfinkle, 2002).

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Dr. Michael Alessandri is the director of the University of Miami Center for Autism and Related Disabilities, clinical associate professor of psychology at the University of Miami, and a member of OAR’s Scientific Council. He has worked with individuals with autism and their families for over 25 years. Prior to arriving in South Florida in 1996, Dr. Alessandri was an Assistant Professor of Psychology at San Jose State University (SJSU) and Associate Director of the Stanford University Pervasive Developmental Disorders Clinic.

Dr. Roberto Tuchman is the director of Autism Programs at Miami Children’s Hospital Dan Marino Center and the director of Developmental and Behavioral Neurology at Miami Children’s Hospital. He was the founding director of the Miami Children’s Hospital Dan Marino Center for children with developmental disorders, serving as its executive medical director from its start in 1998 through 2001. Dr. Tuchman is an associate professor of neurology at Miami Children’s Hospital, in association with the University of Miami’s Miller School of Medicine.