Unsubstantiated treatments for individuals with autism

Public awareness and interest in autism has markedly increased within the past decade as autism prevalence rates have experienced a dramatic increase [1], [2]. With increased incidence and public awareness has also come a corresponding increase in treatment options, many of which have little or no empirical support. The purpose of this editorial is to draw awareness to the multitude of unsubstantiated treatment options available to parents of children with autism. First the characteristics of autism will be reviewed, and then a discussion of the controversial treatments targeting individuals with autism is provided.

Autism is a disorder characterized by three diagnostic criteria. These include impairments in social interactions, impairments in communication, and the presence of restricted and stereotyped behaviour [3]. Autism encompasses a large spectrum of severity across these domains. For example, half of all individuals with autism are non-verbal, while the others have some degree of functional verbal language [4], [5]. Autism is also associated with a wide spectrum of cognitive functioning and often comorbidly occurs with a variety of other disorders [6]. In other words, no two individuals with autism are exactly alike.

Autism was first introduced by Leo Kanner in 1943 [7]. Prior to the late 1990s, autism was considered a rare disorder with incidence rates ∼2–4 per 10 000 children [7]. However, recent years have seen a dramatic increase in reported prevalence. In fact a 57% increase in prevalence occurred from 2002 to 2006. The most recent incidence rates report that as many as 1 in 110 children are diagnosed with an autism spectrum disorder (ASD) [1]. A myriad of factors have been thought to have influenced the spike in prevalence, including a change in diagnostic criteria, public awareness, improved screening and diagnostic services, the development of specialized services, as well as a true increase. However, no clear answer has been identified and a true increase in incidence still remains in question [7], [8]. The exact cause of autism is also unknown; however, much research suggests that the cause is actually a combination of factors including both environmental and genetic influences [7], [8].

Autism is a lifelong disorder; however, appropriate treatment produces numerous benefits. Applied behaviour analysis (ABA) is one such treatment with empirical evidence for providing substantial, widespread, long-lasting benefits [2], [9], [10]. Unfortunately, many treatment options presented to families of children with autism have not been exposed to rigorous scientific study like ABA [10]. In fact, parents of children with autism are bombarded with numerous treatment options. In an internet survey of parents of children with autism, parents reported the current or previous use of 111 distinctly different treatments. Treatment reported by parents in the internet survey included standard therapies, such as speech and music therapy; skills training based on ABA; medication; physiological treatment, such as sensory integration; vitamin supplements; alternative diets; and more [11].

With such an abundance of treatment options, it is important for parents and practitioners to be able to distinguish evidence-based treatments. Many terms have been used to describe treatments which have not been exposed to rigorous scientific study, including ‘fad’, ‘controversial’, ‘alternative’ and ‘pseudoscientific’; however, for the most part these refer to treatments that are unsubstantiated or non-evidence based [12]. It is important to note; however, that it is assumed that most parents and practitioners who work with individuals with autism would agree that all treatments implemented with individuals with autism should have evidence of success; however, the disagreement typically lies in defining what constitutes evidence of success. For example, researchers typically agree that interventions should be exposed to sound scientific study, while some practitioners and parents of children with autism may knowingly or unknowingly accept treatments with proof of evidence consisting of one poorly-designed, non-scientific study; personal testimonials; or commercial advertisement [12].

The insistence of the use of only research-based interventions is not only voiced by researchers. In fact, Council for Exceptional Children, the Organization for Autism Research and the Autism Society of America all promote the use of interventions which have scientific validation [13–15]. Moreover, US federal law, specifically No Child Left Behind (2001) and Individuals with Disabilities Education Act (2004), promote the use of scientifically-based practice for students receiving special education [16].

Although consumers (i.e. parents and teachers of individuals with autism) are encouraged to some degree to select scientific evidence-based practices, the reality is that many children with autism are exposed to treatments with little or no scientific validity. For example, Heflin and Simpson [17] objectively reviewed 32 interventions commonly used in the treatment of children with autism. The results concluded not only that several treatments are not supported by rigorous scientific testing, but also many treatments were found to be ineffective. Similarly, the results of an internet survey conducted by Green et al. [11] concluded that empirical evidence, or lack thereof, did not differentiate between frequently and rarely used treatments. Furthermore, Green et al. [11] concluded that the mean number of treatments which one child was receiving at one time was seven, making it virtually impossible to determine the success of each individual intervention. A small sample of unsubstantiated treatments frequently implemented with individuals with autism includes the gluten-free and casein free diet [2], sensory integration therapy [2], [18], [19], Relationship Development Intervention (RDI) [2], auditory integration therapy [20] and facilitated communication [21].

Regardless of the organizational and legal support of evidence-based practices, practitioners and parents of children with autism are prone to selecting unsubstantiated treatments. This may be related to several factors. First, parents are often in a state of desperation after receiving news of their child's diagnosis, which often results in a willingness to try anything at least once [10]. Secondly, parents may feel an overwhelming sense of guilt regarding the selection of treatments, with many of them fearing that they may one day look back with regret about not trying the one treatment that may have worked for their child [10]. Thirdly, parents of children with autism are likely to have very little knowledge about autism, which, after all, is still considered an uncommon disorder. They also are unlikely to have extensive knowledge of research-based interventions or the concept of rigorous scientific assessment [10]. A fourth factor is the lack of agreement among the professionals in the field. Unfortunately, evidence-based practices are not the standard approach accepted by the vast majority of practitioners in the field of autism [22]. In fact, parents often receive conflicting opinions and recommendations from practitioners. This is most likely a result of limited professionals in the field who are well-trained and educated in the use of evidence-based procedures [10]. Without a strong practitioner front for evidence-based practices and instead often conflicting recommendations, parents are left confused and often searching for answers from a multitude of sources, such as other families, the internet and commercials. A final factor is the nature of autism, in that the symptoms are displayed in a unique pattern on a wide spectrum of ability, unique to each individual. Therefore, parents may be under the false impression that they must try a multitude of treatment options to find the unique treatment that works with their unique child. In other words, they may have a unique resistance to failed treatments, believing that the next treatment will be the ‘match’ for their child.

The harmful effects of unsubstantiated treatments are numerous. First, not only may the treatment be ineffective, the treatment may also pose potential dangers. For example, Green et al. [11] found that anti-depressants are one option used by parents of children with autism; however, potential side-effects of such medication include cardiac toxicity, lowering the seizure threshold, neurotoxicity and hypertension [23]. Chelation, another unsubstantiated treatment option for individuals with autism, has so many potential negative side-effects, the most alarming being death, that the US federal government terminated enrolment for two clinical trials testing the effects of chelation [24], [25]. A second harmful effect is the amount of time unsubstantiated treatment may waste. The importance of early intervention in the treatment of autism cannot be overstated; therefore any time consumed with unsubstantiated treatments wastes valuable time which could be committed to scientifically validated treatment [2]. Thirdly, unsubstantiated treatments can be costly, wasting thousands of dollars with no positive effect [2]. Last, while raising a child with a disability leads to high levels of frustration, disappointment and stress, unsubstantiated treatments can further the emotional turmoil experienced by providing parents with false hope [2], [26].

Parents of children with autism are unfortunately targets for unsubstantiated treatments. Because of the harmful effects that such treatments may have not only on the individual with autism, but also the family, it is important that parents and professionals are educated about treatment options. As parents and professionals in the field become more knowledgeable about the process and value of scientific assessment, it is hopeful that they can make more educated treatment choices.