Written by David Celiberti, PhD, BCBA-D and Denise Lorelli, MS
Association for Science in Autism Treatment
Yes, sadly it can happen. With 500+ purported treatments for autism, there is no shortage of so called “treatments” whose name begins with some activity, substance, or favorite pastime and ends in the word “therapy.” A cursory internet search would reveal such “therapies” as music therapy, art therapy, play therapy, sand therapy, dolphin therapy, and horseback riding therapy. You would also find bleach therapy, vitamin therapy, chelation therapy, and helminth worm therapy joining the list of the more established habilitative therapies such as physical therapy, occupational therapy, and speech-language therapy (this is by no means an exhaustive list of the array of “therapies” that are marketed to consumers). Touted therapies can involve all sorts of things. I recall sitting on a panel at Nova University in the late ‘90s with another provider boasting the benefits of llamas and lizards.
What concerns us are the assumptions – made by consumers and providers alike – that promoted “therapies” have legitimate therapeutic value, when, in fact, there is often little-to-no scientific evidence to support them. Some might rightfully say that many of these methods are “quackery” without such evidence. The focus on such unproven methods or “therapies” may result in financial hardship and caregiver exhaustion, further exacerbating the stress levels of participating families. What is most alarming is that these “therapies” may be detrimental because they may separate individuals with autism from interventions that have a demonstrated efficacy, thus delaying the time of introduction of an effective therapy.
This need for effective interventions has been echoed by the American Academy of Pediatrics. In their guidelines focusing on the management of autism spectrum disorders, they state: “Unfortunately, families are often exposed to unsubstantiated, pseudoscientific theories and related clinical practices that are, at best, ineffective and, at worst, compete with validated treatments or lead to physical, emotional, or financial harm. Time, effort, and financial re-sources expended on ineffective therapies can create an additional burden on families” (p. 1174).
If a child diagnosed with cancer were prescribed chemotherapy, there is a reasonable expectation that chemotherapy would treat or ameliorate the child’s cancer. Parents of individuals with autism have that hope as well when their children are provided with various therapies. While this hope is understandable, it is often placed in a “therapy” for which there is an absence of any legitimate therapeutic value. We hope the following will help both providers and consumers become more careful in how they discuss, present, and participate in various “therapies.”
Some Faulty Assumptions Involving Therapies
- Anything ending in the word “therapy” must have therapeutic value. The word “therapy” is a powerful word and clearly overused; therefore, it would be helpful to begin with a definition.
Let’s take a moment and think about this definition: Merriam-Webster Therapy: noun \ˈther-ə-pē\
“a remedy, treatment, cure, healing, method of healing, or remedial treatment.”
When a “therapy” provider or proponent uses the word “therapy,” he/she is really saying: “Come to me…I will improve/treat/cure your child’s autism.” The onus must be on the provider/proponent to be able to document that the “therapy” has therapeutic value, in that it treats autism in observable and measurable ways or builds valuable skills that replace core deficits. - Providers of said “therapy” are actually therapists. It is not unreasonable for a parent or consumer to assume that the providers of particular “therapies” are bona fide therapists. It is also reasonable for a parent to believe that someone referring to him/herself as a therapist will indeed help the child. However, simply put, if an experience is not a therapy, then the provider is not a therapist. He or she may be benevolent and caring, but not a therapist. Some disciplines are well established and have codified certification or licensed requirements, ethical codes, and practice guidelines (e.g., psychology, behavior analysis, speech-language pathology, occupational therapy). Consumers would know this, as “therapy” providers will hold licenses or certifications. Notwithstanding, consumers can look to see if the provider has the credentials to carry out a particular therapy, and these credentials can be independently verified (please see http://www.bacb.com/ as an example). A chief distinction is that licenses are mandatory and certifications are voluntary. In the case of licensure, state governments legislate and regulate the practice of that discipline. It cannot be over-stated that just because a discipline has certified or licensed providers it does not necessarily mean that those providers offer a therapy that works for individuals with autism. This segues into the third assumption.
- All “therapies,” by definition, follow an established protocol grounded in research and collectively defined best practices. Let’s revisit our chemotherapy example. Chemotherapy protocols have a basis in published research in medical journals and are similarly applied across oncologists. In other words, two different oncologists are likely to follow similar protocols and precise treatments with a patient that presents with similar symptoms and blood work findings. This is not the case with many autism treatments. Most therapies lack scientific support altogether and are often carried out in widely disparate ways across providers often lacking “treatment integrity.”
- If “XYZ therapy” is beneficial for a particular condition, it would benefit individuals with autism as well. Sadly, this kind of over-generalization has been observed and parents of children with autism are often misled. Suppose underwater basket weaving was demonstrated through published research to improve lung capacity. Touting the benefits of this as a treatment for autism would clearly be a stretch. Therapeutic value in autism must focus on ameliorating core symptoms and deficits associated with autism such as social challenges, improving communication skills, and reducing or eliminating the behavioral challenges associated with autism.
Some scenarios
As stated above, when parents invest time and hope into therapy there is, most likely, an assumption that their child’s autism will be ameliorated. Parents and providers look for improvement or significant changes in the core deficits related to autism (e.g., socialization, language, and mal-adaptive or problem behavior). What complicates the picture is that many so-called “therapies” appear to be enjoyable to individuals with autism. When we find pleasure in a particular thing or activity, we tend to stick with it, we express our joy about it in some way such as a gesture, smile, or verbalization. This would apply to individuals with autism as well. Some of the activities associated with various “therapies” are just that: enjoyable experiences. However, “therapy” must involve more than positive moments in time; it must promote positive change that endures over time. The following are a few examples of alternative ways to conceptualize “therapies.” This is not to say that these experiences are bad; they are not, however, scientifically-proven therapeutic interventions.
Dog Therapy
Dogs can be very sociable and affectionate pets. A dog may be a common interest that may be shared with others. There are many opportunities for socialization when people gather around a dog. An individual with autism may tolerate a closer proximity of others who approach the dog and may learn to answer predictable questions about his/her pet. In addition, more conversational language may be heard from an individual with autism while interacting with a dog. This example is not intended to minimize the experience of dog services, as it may be applied in other ways (e.g., a dog that prevents a child with autism from bolting); however, it is meant to showcase how easy it is to boast “therapeutic value” when an array of positive experiences may be brought about by the “therapy.”
Therapeutic Horseback Riding
Horseback riding involves a number of important routines beyond the sheer act of riding a horse. The routine of prepping the horse stays the same each time and the repetitiveness of the large strokes in brushing the horse’s body may also be very enjoyable for some. Individuals with ASD may become very adept at feeding, grooming, and/or saddling a horse, and they may look quite appropriate during these activities. In addition, the individual with autism may appear very competent and content while engaged in horseback riding. Nonetheless, in the absence of more global benefit targeting the core deficits of autism, it would be inappropriate to call this a “therapy” for autism. Nothing against horses!
Sensory Activities such as Swinging
Many individuals appear very calm and content when swinging. It is important to make a distinction between whether the individual with autism needs to swing or likes to swing. In the latter case, swinging may serve as a powerful reinforcer and can be incorporated into the child’s schedule as such. Furthermore, an individual may be very motivated by other reinforcers such as chocolate cake, and cake may have a calming effect; however, it would be imprudent to coin the term “chocolate cake therapy.”
In many of these examples, what is put forth as “therapy” is more accurately described as a potential source of pleasure or an opportunity to practice or develop certain skills. As such, they set the occasion for a leisure experience that the individual with autism may share with others; but they do not, in and of themselves, result in lasting, functional change.
Is a “therapy” a THERAPY?: Questions to Ask
Below are seven questions that should always remain at the forefront and asked of every treatment proponent/marketer regardless of discipline
- What is the focus of the therapy? The therapy must target one or more of the core features of autism in order to be legitimately viewed as an autism therapy (e.g., social skill deficits, joint attention). In other words, which deficit or excess the therapy intended to target?
- What is the therapeutic value? This therapeutic value must involve demonstration of a positive impact on those targets. Furthermore, there must be a clear connection between the therapy and the subsequent therapeutic outcome not just a temporal association. That is, it must be demonstrated that the improvement is actually due to the “therapy” and not the passage of time or benefit actually derived from other treatments occurring at the same time. Consider our dog therapy example: Persons with autism may like their dog, it may promote increased opportunities for social interaction, and may create the occasion to learn animal-care routines and to carry these out consistently. Researchers would describe these beneficial outcomes as non-specific therapeutic effects. That is, the skills described above, while important for the individual, may have occurred without the therapy by simply providing the individual with a pet they prefer and some teaching on how to care for that pet.
- Is there published research in peer-reviewed journals supporting claims made? Consumers should look for evidence of published findings in peer-reviewed journals rather than anecdotal evidence or testimonials as these are not always reliable sources of information and may be deliberately worded to generate business.
- Are therapeutic gains enduring? The documented benefits must persist over time and generalize across settings. Evidence of that should be clear and compelling.
- Who can provide this? The “therapist” should have the proper training, experiences, and credentials to carry out said therapy. Professionals should also not be practicing outside of their area of expertise.
- How is the therapy carried out? Therapy should be adapted to the individual with autism based on the individual’s characteristics and needs, not based on therapist preferences (he or she carries out therapy in a certain manner for all recipients).
- How will the effects of the therapy be measured? There must be an objective way to measure gains occasioned by the therapy and decisions to continue/discontinue/modify should be based on data.
As an autism community, both providers and consumers need to be very careful and selective about which experiences we attach to the word “therapy.” Misuse of this term can be misleading, can raise false hope, can sap family resources, and can separate children from treatments with a documented track record of success. If you want to call something therapy, it must be scientifically demonstrated to be therapeutic. Otherwise, call it a wonderful recreational experience, a reinforcer, a hobby, etc. Such a shift in how we refer to these experiences is not meant to cheapen their value, but to clarify our expectations with regard to outcomes.
References
Myers, S. M., Johnson C. P., & the Council on Children with Disabilities (2007). Management of children with Autism Spectrum Disorders.
Citation for this article:
Celiberti, D., & Lorelli, D. (2012). Underwater basket weaving therapy for autism: Don’t laugh! It could happen. Science in Autism Treatment, 9(4), 8-10.
This article updated in November 2019.
#EarlyCareerAndStudents #Parents #NewParents #SavvyConsumer
