Recently a study was published where three researchers (Dr Suzanne Macar, Dr Angelina Vernetti and Dr Katarzyna Chawarska) at Yale did an experiment where they aimed to scare both autistic and neurotypical children, trying to establish a link between distress and autism in early childhood, while suggesting it may impact ‘emerging affective and behavioural symptoms.’
The study is problematic for several reasons, but the most problematic issues included.
- Parents were instructed to remain neutral and not interact with their child throughout the experiment.
- They were actually aiming to ‘elicit fear with novel and threatening stimuli’!
- A stranger was wearing scary masks and a fearful mechanical spider to scare the children.
Yet this study was still approved by the Yale Institutional Review Board. For more details on the problems associated with this study, I recommend reading Ann’s Twitter thread below.
Naturally many were outraged by the Yale study. Last night (UK time) I saw there response to the criticism which was extremely disappointing to read, but let me explain why I feel this way.
- They claim their methods were
‘the result of countless stakeholders offering input into their standards of implementation and ethics’.
Again it’s not clear who these stakeholders were and their association with autism research and methodologies. I suspect (but cannot be sure) that the autistic community were not considered a stakeholder for this study. Nothing about us without us is vital, because neurotypicals often misunderstand how their research and actions can harm us even when they gain ethical approval.
- They claim the purpose of the study was
‘to improve understanding of anxiety and depression in autism’ because ‘In the general population, decades of research have shown that atypical emotional development in early childhood is predictive of later emotional distress.’
In this context, autistic people are different from most of the general population, so how did they conclude that this was automatically the case for autistic people? (this needs justifying with evidence) as I highly doubt all people with atypical emotional development are autistic.
- They then repeat the results of the study
‘Our research found that toddlers with autism respond with slightly less distress to brief presentations of new objects like mechanical toys or Halloween masks compared to neurotypical peers’ ‘However, they were slightly more distressed than their peers when approached briefly by an unfamiliar person. These profiles of emotional reactivity may suggest risk for emotional difficulties later on.’
Surely you would need a longitudinal study to make this claim? I find it interesting as well that they hypothesised this for autistic toddlers but did not make any comment on neurotypicals being slightly more distressed by the objects. What does this mean for their emotional development? Why were only the autistic participants’ responses highlighted like this?
- They justifying their scaring because it was only ‘brief’ sent shivers down my spine. Scaring toddlers the way they did at all is problematic. The fact they did not recognise they shouldn’t have done this at all (even after the autistic community’s response) is frankly disgusting.
- Another statement they made was
‘We implemented a strict protocol to ensure that children were not experiencing extreme negative emotions, and none did.’
However, no details were given of what this strict protocol was and how did they recognise the children were experiencing emotional distress. As autistic people tend to express their emotions differently than neurotypicals, I am concerned the researchers may have had challenges identifying when this was the case.
- They ended their statement with
‘Concerns about research are always taken seriously, and Yale School of Medicine takes great care to ensure that science is a collaborative process with families and within the local and global community of which we are all a part.’
Yet many autistic people are not receiving responses when stating their concerns to Yale or a being blocked by their social media accounts. Also, the article is no longer available (only the abstract) meaning I can’t thoroughly examine the study they published anymore. So this doesn’t exactly match up with what they are saying above.
Ultimately Yale messed up, but I am deeply concerned because they are seemingly trying to avoid being held accountable for a study that appears to have involved child abuse (in my opinion) by emotionally distressing young children.
Link to the study’s abstract: https://europepmc.org/article/med/33283976
Link to the statement from Yale: https://medicine.yale.edu/news-article/29344/
If you enjoy my writing or would like to support my online advocacy work, I would be forever grateful if you could buy me a coffee (or tea in my case).
Sarah Boon 
Reblogged this on Autism Candles.