SEPARATING FACT FROM FICTION IN THE ETIOLOGY AND TREATMENT OF AUTISM A Scientific Review of the Evidence

Autistic-spectrum disorders are among the most enigmatic forms of developmental disability. Although the cause of autism is largely unknown, recent advances point to the importance of genetic factors and early environmental insults, and several promising behavioral, educational, and psychopharmacologic interventions have been developed. Nevertheless, several factors render autism especially vulnerable to pseudoscientific theories of etiology and to intervention approaches with grossly exaggerated claims of effectiveness. Despite scientific data to the contrary, popular theories of etiology focus on maternal rejection, candida infections, and childhood vaccinations. Likewise, a variety of popular treatments are promoted as producing dramatic results, despite scientific evidence suggesting that they are of little benefit and in some cases may actually be harmful. Even the most promising treatments for autism rest on an insufficient research base, and are sometimes inappropriately and irresponsibly promoted as “cures.” We argue for the importance of healthy skepticism in considering etiological theories and treatments for autism. Autism is a pervasive developmental disorder marked by profound deficits in social, language, and cognitive abilities. Prevalence rates range from 7 to 13 cases per 10,000 (Bryson, 1997; Bryson, Clark, & Smith, 1988; Steffenberg & Gillberg, 1986; Sugiyama & Abe, 1989). It is not clear if the actual prevalence of autism is increasing, or if the increased frequency of diagnosis has resulted from wider recognition of the disorder and especially recognition of the full range of pervasive developmental disorders, often referred to as “autistic-spectrum disorders.”1 Either way, autism is no longer considered rare, occurring more commonly than Down’s syndrome, cystic fibrosis, and several childhood cancers (Fombonne, 1998; Gillberg, 1996). The degree of impairment associated with autism varies widely, with approximately 75% of autistic individuals also meeting criteria for mental retardation (American Psychiatric Association [APA], 1994). Autism occurs three to four times more frequently in males than females (Bryson et al., 1988; Steffenberg & Gillberg, 1986; Volkmar, Szatmari, & Sparrow, 1993). Although recent advances have been made with respect to possible causal factors (Rodier, 2000), the exact etiology of autism remains unknown. Moreover, although certain behavioral, educational, and pharmacological interventions have been demonstrated to be helpful for many individuals with autism, there is currently no cure for the disorder. WHY AUTISM IS FERTILE GROUND FOR PSEUDOSCIENCE Several factors render autism especially vulnerable to etiological ideas and intervention approaches that make bold claims, yet are inconsistent with established scientific theories and unsupported by research (Herbert & Sharp, 2001). Despite their absence of grounding in science, such theories and techniques are often passionately promoted by their advocates. The diagnosis of autism is typically made during the preschool years and, quite understandably, is often devastating news for parents and families. Unlike most other physical or mental disabilities that affect a limited sphere of functioning while leaving other areas intact, the effects of autism are pervasive, generally affecting most domains of functioning. Parents are typically highly motivated to attempt any promising treatment, rendering them vulnerable to promising “cures.” The unremarkable physical appearance of autistic children may contribute to the proliferation of pseudoscientific treatments and theories of etiology. Autistic children typically appear entirely normal; in fact, many of these children are strikingly attractive. This is in stark contrast to most conditions associated with mental retardation (e.g., Down’s syndrome), which are typically accompanied by facially dysmorphic features or other superficially evident abnormalities. The normal appearance of autistic children may lead parents, caretakers, and teachers to become convinced that there must be a completely “normal” or “intact” child lurking inside the normal exterior. In addition, as discussed above, autism comprises a heterogeneous spectrum of disorders, and the course can vary considerably among individuals. This fact makes it difficult to identify potentially effective treatments for two reasons. First, there is a great deal of variability in response to treatments. A given psychotropic medication, for example, may improve certain symptoms in one individual, while actually exacerbating those same symptoms in another. Second, as with all other developmental problems and psychopathology, persons with autism sometimes show apparently spontaneous developmental gains or symptom improvement in a particular area for unidentified reasons. If any intervention has recently been implemented, such improvement can be erroneously attributed to the treatment, even when the treatment is actually ineffective. In sum, autism’s pervasive impact on development and functioning, heterogeneity with respect to course and treatment response, and current lack of curative treatments render the disorder fertile ground for quackery. A number of contemporary treatments for autism can be characterized as pseudoscientific. Most scientists agree that there are no hard-and-fast criteria that distinguish science from pseudoscience; the differences are in degree, rather than kind (Bunge, 1994; Herbert et al., 2000; Lilienfeld, 1998). Although a detailed treatment of pseudoscience in mental health is beyond the scope of this paper, a brief discussion of the features that distinguish it from legitimate science is important in order to provide a context for considering currently popular etiological theories and treatments for autism. In general, pseudoscience is characterized by claims presented as being scientifically verified even though in reality they lack empirical support (Shermer, 1997). Pseudoscientific treatments tend to be associated with exaggerated claims of effectiveness that are well outside the range of established procedures. They are often based on implausible theories that cannot be proven false. They tend to rely on anecdotal evidence and testimonials, rather than controlled studies, for support. When quantitative data are considered, they are considered selectively. That is, confirmatory results are highlighted, whereas unsupportive results are either dismissed or ignored. They tend to be promoted through proprietary publications or Internet Web sites rather than refereed scientific journals. Finally, pseudoscientific treatments are often associated with individuals or organizations with a direct and substantial financial stake in the treatments. The more of these features that characterize a given theory or technique, the more scientifically suspect it becomes. A number of popular etiological theories and treatment approaches to autism are characterized by many of the features of pseudoscience described above (Green, 1996a; Green, 2001; Herbert & Sharp, 2001; Smith, 1996). Still other treatments, although grounded on a sound theoretical basis and supported by some research, are nonetheless subject to exaggerated claims of efficacy. What follows is a review of the most popular dubious theories and questionable intervention approaches for autism. We also review promising etiologic theories and treatments. Some intervention programs are designed specifically for young children, whereas others are applied across a wider age range. THE ETIOLOGY OF AUTISM: SEPARATING FACT FROM FICTION Psychoanalytic Explanations Although modern theories of autism posit the strong influence of biological factors in the etiology of the disorder, psychoanalytic theories have abounded traditionally. Kanner (1946) was the first to describe the parents of children with autism as interpersonally distant. For example, he concluded that the autistic children he observed were “kept neatly in refrigerators which did not defrost” (Kanner, 1973, p. 61). However, Kanner also stressed that the disorder had a considerable biological component that produced disturbances in the formation of normal emotional contact. It was Bruno Bettelheim who was perhaps the most influential theorist promoting psychoanalytic interpretations of autism. Bettelheim rose to prominence as director of the University of Chicago’s Orthogenic School for disturbed children from 1944 to 1978. He rejected Kanner’s conclusions positing a biological role in the etiology in autism and was convinced that autism was caused by “refrigerator” mothers. According to Bettelheim, autistic symptoms are viewed as defensive reactions against cold and detached mothers. These unloving mothers were sometimes assumed to be harboring “murderous impulses” toward their children. For example, in his book The Empty Fortress, Bettelheim (1967) wrote that one autistic girl’s obsession with the weather could be explained by dissecting the word to form “we/eat/her,” indicating that she was convinced that her mother, and later others, would “devour her.” Based on his conceptualization of autism, Bettelheim promoted a policy of “parentectomy” that entailed separation of children from their parents for extended periods of time (Gardner, 2000). Other psychoanalytic therapists such as Mahler (1968) and Tustin (1981) promoted similar theories positing problems in the mother-child relationship as causing autism (see Rosner, 1996, for a review of psychoanalytic theories of autism). After his suicide in 1990, stories began to emerge that tarnished Bettelheim’s reputation (Darnton, 1990). Several individuals claimed abuse at the hands of the famous doctor when they were at the Orthogenic School. Furthermore, information emerged that Bettelheim often lied about his background and training. For example, although he frequently claimed to have studied under Freud in Vienna, Bettelheim possessed no formal training in psychoanalysis whatsoever, and instead held a degree in philosophy. Also, Bettelheim claimed that 85% of his patients at the Orthorgenic School were cured after treatment; however, most of the children were not autistic and the case reports he presented in his books were often fabrications (Pollak, 1997). Despite the continued acceptance of Bettelheim’s theories in some circles, no controlled research has been produced to support the refrigerator mother theory of autism. For example, Allen, DeMeyer, Norton, Pontus, and Yang (1971) did not find differences between parents of autistic and mentally retarded children and matched comparison children on personality measures. Despite the complete absence of controlled evidence, even today some psychoanalytic theorists continue in the tradition of Bettelheim by highlighting the putative role of early mother-child attachment dysfunctions in causing autism (Rosner, 1996).