There Are a LOT of Supposed Autism Treatments
“We’ve avoided gluten for the last year, his IEP feels impersonal, and my sister keeps telling me to send him to equestrian therapy! I am lost, siphoning cash, and my son hasn’t improved at all.”
Statements like these are all too common in the world of Autism Spectrum Disorder and disability. The truth is that finding effective treatments for an individual with Autism Spectrum Disorder (ASD) is a daunting task and very little help is available. A quick Google search reveals a maze of conflicting information – from “expert” opinions, to parent testimonials, to horror stories about new fad treatments. The beauty and challenge of ASD is that every person on the spectrum has a unique set of skills, desires, and deficits. No child is built the same or has the same needs. It is for this reason that there are no universally effective treatments for ASD. Any worthwhile treatment must recognize this and develop goals that reflect the individuality, values, and preferences of the individual. Also, no treatment should ever set out to “cure” autism, but rather to help the client reach the height of their potential and to ultimately be able to access a rich and fulfilling life.
This end goal sounds amazing but there is very little guidance for selecting an appropriate treatment. MANY treatments claim to improve the lives of recipients and their families and MANY treatments are available via medical insurance, community centers, or at schools. In fact, a 2017 survey of 1155 parents of children with ASD identified over 30 treatments that parents had tried (Bercerra et al. 2017). This list includes, Applied Behavior Analysis (ABA), Early Start Denver Model (ESDM), Floortime, Social Skills Training, Occupational Therapy (OT), Physical Therapy (PT), Counseling, Special Diets, and many more.
How to Select an Appropriate Treatment for Your Child with Autism
The number of available options can be dizzying and there is rarely a clear path forward for an individual with ASD and their family. Fortunately, there is one powerful tool that we have that can provide some clarity – the guidelines of EVIDENCE- BASED PRACTICE.
Evidence-Based Practice (sometimes referred to as Evidence-Based Treatment) is a set of guidelines from the medical world that can be used to judge the quality and acceptability of a treatment. The easiest way to describe EBP is through the metaphor of a “three-legged stool” (Sackett et al. 1996). There are three essential features of an EBP, each one representing a leg of the stool, and if just one leg is absent then the stool cannot stand. These three legs or features are: Clinical Expertise, Research Evidence, and Client Values. We will review each in turn.
1. Clinical Expertise
Simply put, the person providing treatment should be qualified to do so. We can typically determine this by asking to view a provider’s credential, license, or certification. In the field of Applied Behavior Analysis, for example, you should always require a Board Certified Behavior Analyst (BCBA) to be the one directing a behavioral assessment. Baked into that certification are standards of experience and education, as well as a code of ethics that a BCBA must abide by. While it is possible to receive quality treatment from a “behavior specialist” or “ behavior consultant”, professional safeguards will not be in place and treatment may be more likely to be unsatisfactory or may, in extreme cases, result in harm to the client.
As important as it is for a clinician to be credentialed, it is equally important that they only practice within their scope of competency. This means that a clinician must always be trained to provide the treatments that they deliver and those treatments must fall within the boundaries of their profession. When in doubt, it is always OK to ask questions or seek other professionals for a second opinion.
It is always the responsibility of the clinician, not the patient, to identify their shortcomings in education or experience. Sadly, this doesn’t always occur so it is important for consumers of these services to be informed, ask questions about experience, and/or request documentation of credentials.
2. Research Evidence
This category questions whether there is high-quality scientific evidence for a proposed treatment. Scientific evidence greatly differs from common knowledge because scientific evidence involves a strict process of editing called peer-review. Peer-review is the process of submitting a research article to a panel of experts and receiving detailed critical feedback. If any of these experts deem the article to be invalid or contain errors then it gets rejected. Some of the most prestigious journals have rejection rates up to 97%! While this system is not perfect, it can be assumed that information from peer-reviewed journals are more truthful, fact-checked, and reliable than word-of-mouth or online articles.
Another feature of scientific knowledge is that it is constantly changing. A new scientific breakthrough might completely change a treatment or stop our use of it entirely. This is not only accepted in the scientific community, it is celebrated! This is rarely the case with nonscientific treatments where it is likely for supporters to dismiss new information that challengings the quality or safety of their product.
Many common treatments for ASD fail this test. For example, there is no supportive research evidence for gluten-free diets, chelation therapy, hyperbaric oxygen therapy, stem cell therapy, vitamin supplements, CBD therapy, therapeutic horseback riding, holding therapy, and many more (visit Association for Science in Autism Treatment [ASAT] for more information). One cannot say that these treatments will not help a child with ASD, but outcomes are more likely to be varied and untested treatments can come with great risk and even greater costs.
In sum, it is always best to use treatments that have solid research evidence. It is perfectly acceptable to request supportive research from your clinician. If the clinician meets the standards of clinical expertise explained above then they should be able to quickly produce quality peer-reviewed research to support their proposed treatment.
3. Client Values
This is the vaguest of the three features of evidence-based, but also perhaps the most important. It is essential that any proposed treatment is acceptable to its recipients. This means that the treatment does not cause unnecessary harm or stress. The proposed treatment goals must be agreed upon by all relevant stakeholders, including: the individual receiving treatment, that individual’s family, and any other community members with whom the client regularly interacts. While it is not always possible to ask a child with ASD to participate in treatment goal planning, an ethical clinician must always advocate for goals that will ultimately improve the life of their client. In the early stages of treatment, this plan often involves developing a system which enables the client to make choices that positively influence their daily lives (e.g., choosing food, clothing, activities, etc.).
An informed consumer should seek a clinician who communicates clearly and often. Consumers should be weary of clinicians who appeal to authority (i.e., “I know what’s right for you”) or who advertise any sort of “one-size-fits-all” treatment. As mentioned before, every individual with ASD is unique and any appropriate treatment should also reflect this uniqueness.
Evidence-Based Practices for Autism Spectrum Disorder
Below is a thorough list of ASD evidence-based practices from an article published in the Journal of Autism and Developmental Disorders (Wong et al. 2015). Please check out ASAT for more information about any of the listed practices.
- Antecedent-Based intervention (ABI)
- Cognitive behavioral intervention (CBI)
- Differential reinforcement of alternative, incompatible, or other behavior (DRA/I/O)
- Discrete trial teaching (DTT)
- Exercise (ECE)
- Extinction (EXT)
- Functional behavior assessment (FBA)
- Functional communication training (FCT)
- Modeling (MD)
- Naturalistic intervention (NI)
- Parent-implemented intervention (PII)
- Peer-mediated instruction and intervention (PMII)
- Picture Exchange Communication System (PECs)
- Pivotal Response Training (PRT)
- Prompting (PP)
- Reinforcement (R +)
- Scripting (SC)
- Self-Management (SM)
- Social narratives (SN)
- Social skills training (SST)
- Structured play groups (SPG)
- Task analysis (TA)
- Technology-aided instruction and intervention (TAII)
- Time delay (TD)
- Video modeling (VM)
- Visual supports (VS)
References with links:
Association for Science in Autism Treatment. Learn more about specific treatments. ASAT. https://asatonline.org/for-parents/learn-more-about-specific-treatments/
Becerra, T. A., Massolo, M. L., Yau, V. M., Owen-Smith, A. A., Lynch, F. L., Crawford, P. M., Pearson, K. A., Pomichowski, M. E., Quinn, V. P., Yoshida, C. K., & Croen, L. A. (2017). A Survey of Parents with Children on the Autism Spectrum: Experience with Services and Treatments. The Permanente Journal, 21, 16–19. https://doi.org/10.7812/TPP/16-009
Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S., … & Schultz, T. R. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of autism and developmental disorders, 45(7), 1951-1966.