One of the first thing that happens when your child is diagnosed with an Autism Spectrum Disorder is that people start telling you what you need to do. Speech therapy, says the pediatrician. Social skills therapy, says the classroom teacher. Occupational therapy, says the school social worker. Applied Behavioral Analysis (ABA), says the occupational therapist.
And then there’s the overwhelming media/celebrity/Facebook/random concerned stranger advice: dietary changes, supplements, yoga, you name it.
When my son was first diagnosed with autism in 2010, I started researching to find out what might be proven to help my son deal with the neurotypical (non-autistic) world. This was perhaps the most disheartening part of my son’s diagnosis: there didn’t seem to be much in the way of evidence-based best practices. There is, however, a metric ton of anecdotal evidence supporting just about any theory from the completely whackjob to the seemingly sensible.
A new study from the RAND Corporation, an independent research and policy analysis organization, is now quantifying this particular problem.
The study, published in the journal Pediatrics, found that interventions designed to improve core deficits (social/communication, language, behavior and adaptive skills) in children with autism spectrum disorders are supported by varying levels of evidence, ranging from moderate to insufficient. The study’s lead author, Margaret Maglione, says it highlights the need for well-designed studies to better evaluate the interventions.
“We reviewed the evidence that exists for widely used interventions for autism and found there was no more than moderate evidence demonstrating the benefits of any of the approaches,” said Ms. Maglione in a press release. “What’s needed are new, well-designed studies that are large enough to tease out the effects of different components and which types of children are best suited for the interventions.”
The study concludes that head-to-head trials of competing autism treatments are needed to identify which programs are superior and additional work should follow study participants long-term to further examine the effectiveness of treatments.
Researchers conducted the project by closely examining information from more than 100 studies that contained at least 10 children or adolescents. The information was reviewed by an expert panel of practitioners, researchers and parents assembled to systematically evaluate the level of evidence for a wide array of behavioral autism treatments and develop priorities for future research.
The expert panel agreed there was enough evidence to endorse the use of:
- Applied Behavior Analysis (ABA)
- integrated behavioral/developmental programs
- the Picture Exchange Communication System (PECS)
- various social skills interventions for Asperger’s syndrome and high-functioning autism.
In addition, they agreed that children with autism spectrum disorders should have access to at least 25 hours per week of comprehensive interventions (often called “intensive early intervention”) to address social communication, language, play skills and maladaptive behavior. How long it will take for that recommendation to filter down to insurance companies, state agencies, and school districts is anyone’s guess.
No treatment was supported by evidence considered stronger than “moderate.” Treatments in this category are supported by reasonable evidence, but include the caveat that further research may change the confidence about the results. In contrast, a treatment supported by a high level of evidence is unlikely to be changed by further research.
Based on the gaps in the evidence, the panel recommends that future research focus on assessment and monitoring of treatment outcomes, address the needs of preverbal and nonverbal children, and identify the most effective strategies, doses and duration of therapy needed to improve core deficits. Importantly, little research on adolescents and young adults was identified, other than for social skills programs for Asperger’s or high-functioning autism. Thus, the panel recommends that adolescents and young adults be a priority population.
The study also found there was moderate evidence that auditory integration training is not effective, and there was insufficient evidence about the efficacy of augmentative and alternative communication devices. The expert panel could not come to consensus about the scientific evidence for sensory integration, deep pressure therapy and exercise.
On a personal note, I’m one of the biggest skeptics on the block. But what I have found with my own kids (two of my four kids have autism spectrum disorders), and in meeting hundreds of families with kids with autism, is that there are therapies that work for some kids and not others. But having more evidence about what tends to work and what doesn’t at least gives parents somewhere to start. Because right now we’re all kind of just taking stabs in the dark.