15 An Investigation of Non-Evidence Based Autism Intervention Representations in the Media

Abstract

Objective:

This study seeks to describe the context and contents of YouTube videos featuring non-evidence-based practices (NEBPs) for autism spectrum disorder, including recent fad usage of transcranial magnetic stimulation.

Participants and Methods:

A sample search of autism intervention-related YouTube videos was conducted to reflect the experience of caregivers researching autism intervention information on the internet. Exclusion criteria was applied to create a preliminary dataset. The videos were categorized into general evidence-based practice (EBP), non-evidence-based practice (NEBP), and both EBP and NEBP. The NEBP-related videos were then qualitatively described using a priori codes based on the literature regarding signs of pseudoscience, as well as an iteratively developed codebook through a constant comparative method between two independent coders.

Results:

Total videos from the YouTube search using the query "Autism Treatment" were capped at 150 videos. Total videos in English were 138. Total discrete videos (non-repeated) were 134. Total NEBP-related discrete videos were 62 (46% of final dataset); Total EBP-related videos were 38 (28.3% of final dataset); and total videos containing both EBP and NEBP as subject matter were 25 (18.6% of final dataset). Of the NEBP-related in the final dataset, the most frequent NEBP which occurred was stem cell therapy (n=26), followed by the Son-Rise program (n=13), Cannabis/marijuana (n=5), transcranial magnetic stimulation/magnetic e-resonance therapy (n=5), neurofeedback (n=1), brain rehabilitation (n=1), suramin (n=2), fecal transplants (n=2), Hyperbaric Oxygen therapy (n=1), Ayurvedic medicine (n=1), virtual reality (n=1), and others. The constant comparative method of coding yielded results specific to videos about NEBPs in autism, including: statements declaring a treatment will be effective, a banner on the YouTube page indicating if the channel is from a reputable source, a parent testimonial, a parent or caregiver display of emotion with respect to treatment efficacy, statements regarding pre-intervention repetitive or challenging behaviors, statements regarding demonstrated effects of the treatment, statements of a definitive cause of autism, statements regarding the severity of the autism in the treatment subject, specific words in reference to autism, including "disease", "toxin", or "inflammation", discussion of the financial aspect of the treatment, and videos with both high and low production values.

Conclusions:

The likelihood of a caregiver encountering and watching videos containing NEBP-related material when using a general query to search the internet for information on autism intervention is high. Additionally, videos regarding NEBPs have more engagements (e.g., likes, comments, shares) than videos regarding EBPs, oftentimes by multitudes. The information contained within videos in which an NEBP is the subject aligns with pre-established warning signs for pseudoscience for autism interventions, however this study also contributes new warning signs through the construction of the iterative codebook. Specifically, statements about treatment efficacy in the absence of cited research, an emotional parent testimony about the individual with autism's experience with the NEBP therapy, statements regarding behavioral improvements linked to participation in the therapy oftentimes in the context of inflated claims, and clear and confident statements regarding the cause of autism with no cited research.