Why Autism research needs to change.
Earlier this month, researchers at Yale University’s school of medicine published findings from a study linking distress and autism. The study, titled “Attend Less, Fear More: Elevated Distress to Social Threat in Toddlers with Autism Spectrum Disorder,” was supposed to examine toddlers’ (both autistic and non-autistic) reactions to fear-inducing situations. The goal of the research was to understand the development of emotional difficulties, such as anxiety and depression, in autistic children. I’ve read my fair share of uninspiring studies, often conducted by neurotypical researchers, linking autism to a wide range of things — from bad parenting to vaccines, so at a first glance I was glad to see a piece of autism research that wasn’t focused on a ‘cure’. However, when my Instagram feed was flooded with details of how this study was actually conducted, I realised that Psychology still has a long way to go when it comes to conducting truly ethical autism research.
For years, psychologists have been ‘experimenting’ on children, often through observational studies with parents present and in carefully controlled settings. Before the research is allowed to be conducted, the research design has to be reviewed and given the green light by an ethics committee to see if the participants might be harmed during or after the study. In this instance, I’m surprised that this study was approved by the Yale Institutional Review board, given the frightening stimuli that was presented to these children and the risk of trauma after the study.
Here’s how the study went down. The sample was made up of 42 autistic and 22 neurotypical two year olds. In three separate trials, the children were exposed to ‘potentially threatening stimuli’, consisting of: a giant mechanical spider and a female stranger wearing dark clothing, a hat and sunglasses. To top it off, they had another stranger enter the room and lean towards the children, wearing a ‘grotesque’ mask. The last trial featured a scary mechanical dinosaur with light up red eyes — I guess Barney the Dinosaur wasn’t available that day. It doesn’t take a psychologist to conclude that most children found these situations anxiety inducing.
Yale claims that they wanted to find out whether emotional reactions to strange occurrences are different between toddlers with and without autism, and they did find that autistic children responded with slightly less distress than the neurotypical children when they encountered the mechanical creatures. However, what Yale failed to point out is that just because an autistic child does not seem distressed (i.e not crying or looking panicked) it does not mean that they weren’t feeling distressed. Autistics and non-autistics sometimes display emotions differently. I’m interested to find out whether the autistic toddlers were stimming or performing an alternative, non-neurotypical action to signal their distress. This is a major problem with observational studies — often the autistic participants’ behaviour is viewed through the non-autistic lens of the researchers.
All in all, the study found (to no one’s surprise) that both autistic and non-autistic toddlers found some of the stimuli distressing. The autistic toddlers found certain stimuli more disturbing than others, such as the stranger walking into the room and displayed more distressed behaviour than the non-autistic group. The study concluded that autistic children are emotionally vulnerable…..err…these are hardly earth-shattering findings.
You see, as someone who is going to conduct scientific research into autism as part of my masters and PhD, I’m conflicted. On the one hand, I know what it feels like to be an autistic child experiencing distress. I agree that we are more emotionally vulnerable to our environment and sometimes the distress we experience in childhood can impact our adult life. But, I don’t think that we need anymore experimental research that treats autistic participants as lab rats to confirm this. When we are deliberately inflicting emotional harm in the name of ‘gold standard autism research’, then it’s time to rethink how we conduct research to help the autistic community. Indeed, the study was approved by an ethics committee because the toddler’s parents gave consent and could withdraw at any time, but it sits uncomfortably with me that the autistic children, already predisposed to be more emotionally vulnerable, could not withdraw or give consent on their own accord.
In the near future, I’m hoping to see autism research evolve. I would like to see autistic researchers actually designing and conducting the studies. I understand that science needs to be objective, but a lot of the current interpretation of autism research findings highlight autistic ‘deficits’ , overlooking our strengths, when compared with non-autistic participants in a study. Now, how about a study measuring the distress of Ivy league professors when they’re told that they have no research funding? Ha.