Professor Andrew Whitehouse, Head of the Autism Research Team at Telethon Kids Institute and Director of CliniKids and his colleagues reported that few autism interventions used in the clinic are backed by solid evidence in 2020, but the complaints against him that followed shocked him.
The Autism Intervention Meta-Analysis, also known as Project AIM, in 2020, along with a numerous review studies over the previous decade emphasizes the most forms of autism therapy’s lack of evidence, though practices such as applied behaviour analysis (ABA) continue to be backed up for their efficacy in the treatment of autism by clinical guidelines and funding organizations. A universal recommendation for autistic children at the time of diagnosis still remains to be early intervention.
Kristen Bottema-Beutel, associate professor of special education at Boston College in Massachusetts, of Project AIM briefed the needs to reassess the claims and guidelines in autism treatment. Experts attribute the lack of high-quality data on autism therapies to the disagreeableness of the autism researchers in determining a threshold of evidence sufficient to say a therapy works and a system of entrenched conflicts of interest artificially lowering the bar.
Brian Boyd, professor of applied behavioural science at the University of Kansas, studying classroom-based interventions highlighted that to support autistic children and their families, clinicians need to make daily decisions.
On the other hand, Whitehouse claims that the safety and costs of interventions need to be considered by the clinicians, as many adverse events such as experiencing physical or emotional harm from practices such as ABA have been reported by autistic people. He also insists that the evidence has to drive the conversation toward more sophisticated trials comparing different therapies and adapting to participants’ needs.
Dating back to 1970s and 1980s, it can be seen that one of the seminal 1987 ABA study by Ole Ivar Lovaas was quasi- experimental and there were other studies where participants served as their own controls. Jonathan Green, professor of child and adolescent psychiatry at the University of Manchester in the United Kingdom, developing parent-training intervention PACT emphasized how the autism interventions struggled to prioritize randomized controlled trials and what keeps the field from advancing toward more effective interventions.
Project AIM also supports Green’s claims reporting that among the studies that test ABA-related interventions, only less than a third were randomized controlled trials, and most of the studies included in national reports issued to U.S. clinicians were single-case designs. The 2021 National Clearinghouse on Autism Evidence and Practice (NCAEP) reporting 28 evidence-based practises, including many behavioural interventions, consisted of 85% single-case design studies, and the 2015 National Standards Report (NSP) identifying 14 effective interventions for autistic children, adolescents and young adults consisted of 73% single-case studies.
Samuel Odom, senior research scientist at the University of North Carolina at Chapel Hill, co-director of the NCAEP review and contributor to the 2015 NSP report, said that if single case studies were excluded, important information with regard to autism interventions would be ignored, hence researchers need alternatives to randomized controlled trials.
Micheal Sandbank, assistant professor of special education at the University of Texas at Austin added that the focus of intensive interventions is to track long-term developmental changes, hence when she led Project AIM, her team entirely omitted single-case design studies as they wouldn’t suit the objective.
On the account of a system of intertwined conflicts of interest, Whitehouse added that though investments like state-wide insurance mandates and financial firms supporting some ABA providers improve access to care, they may jeopardise the field’s commitment to high-quality evidence.
Bottema-Beutel underlined that the financial concerns also would fuel several potential conflicts of interest in the field interrupting the progress in critically evaluating evidence. She mentioned about the involvement of board-certified behaviour analysts (BCBAs) in the editorial boards of journals that publish behavioural intervention research. However, in pointing out the same, she clarified if conflicts are stated clearly, readers can read their work with appropriate scrutiny.
Cynthia Anderson, senior vice president of ABA at the May Institute and director of the institute’s National Autism Center while working on a new report on autism interventions specified that when the NSP report was published rigorously interrogating potential competing interests within research agendas was not common.
Odom suggested that in order to avoid the influence of bias in evaluating the literature, the researchers should be open to consider behavioural and other interventions and the researchers who created autism interventions should choose not to test them.
According to a 2018 review, the number of randomized controlled trials in the field has increased from 2 in 2000 to 48 in 2018, the majority of which occurred after 2010. However, the same review found that only 12.5% of the randomized trials had a low risk of bias.
Tony Charman, professor of clinical child psychology at King’s College London in the U.K, pointed out the need to compare multiple interventions instead of trials testing single interventions, and present families with the benefits and limitations of various treatments aiding them in making informed decisions.
To state examples of studies that help to reveal which interventions provide the most benefits for the least amount of time and cost, a 2021 study found that neither an ABA-based intervention nor the Early Start Denver Model (ESDM) outperformed the other. Kasari and her team reported from their research that sequential multiple assignment randomized trials or SMART studies will help identify how to personalize treatment strategies for individuals.
In summary, Green mentioned that tight criteria to publish autism intervention studies and proper funding to study complex study designs would lead the field in the right direction, adding to which Whitehouse mentioned that the individual investigators need to exercise accountability in delivering safe and effective therapies.
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