An Open Letter About Yet Another Egregiously Bad Autism Study
My friend Andrew Hutsell, whom many of you may remember from their fantastic takedown of Hu et al’s atrocious paper on moral consistency in autistic folks, is taking on another terrible study. This one is full of researchers who seem awfully proud of torturing an autistic youth repeatedly. There’s nothing of value here. They haven’t trained this kid to do anything useful. Their methods for him to handle the pain – yes, pain – that loud sounds cause are about as effective as prescribing platitudes for someone suffering from major depression. They haven’t learned anything about autistic people, because they don’t bother trying to understand our actual experiences. In an open letter to the institutions these researchers work for, Andrew asks some very pointed questions, and demonstrates just how ridiculous their methods are.
To Whom It May Concern at Indiana University, Northshore University, Northshore University, and Johns Hopkins University School of Medicine;
I was recently made aware of this study:
Authors: Jill C. Fodstad, Stephanie A. Kerswill, Alexandra C. Kirsch, Ann Lagges & Jonathan Schmidt
Published: Journal of Autism and Developmental Disorders volume 51, pages1811–1822 (2021)
Two things first:
2. The IRB failed to recognize the protocol was calling for exposing the autistic subject to pain, repeatedly, and disincentivizing the subject from seeking relief from that pain. This is categorically a violation of the Belmont Report’s requirement for respect for persons and beneficence.
Hand stereotyping is known colloquially in the autistic community as “stimming.” Stimming is not inherently negative. Typically “increased hand stereotyping” means hand flapping and other hand movements. Going forward I will refer to repetitive movements, what experts call “stereotyping”, with the culturally acceptable word “stimming” instead. Autistic people, myself included, often flap our hands when we’re overwhelmed, need emotional regulation, are distressed, or when we’re excited. The nature and meaning of the stim can be highly dependent on each autistic person as well as what we’re reacting to. It is not meaningless. And it is not a “problem behavior.”
This increased hand stimming along with covering his ears and attempting to escape all point to this being a signal of distress. These are all hints that this autistic person is probably in sensory pain. Yet the researchers throughout the paper refer to his noise sensitivity as an anxiety or phobia.
2. This autistic teen has such extreme reactions to certain sounds/loud sounds, and they characterize it repeatedly as just an “anxiety” response and/or a phobia. Pretty much every autistic person reading about his reactions to the noise is saying “This is a pain response. This person is in pain.”
I myself have sound/tactile synesthesia as well as hyperacusis. Some sounds are extremely painful for me and can cause other extreme/unsettling body reactions (feeling like there are ants under my skin, or that my skin is “rippling”, etc). Other sounds are painful to my ears/eyes. That’s right. There are some sounds that are so painful I can’t open my eyes.
I’m not this particular teenager. I don’t know him. But I do know autistic pain responses. I do know that pretty much every autistic person I know who read the description of this boy’s extreme behavior in response to certain noises was interpreted as a pain response.
Was anything done before the study began to determine whether or not he was in pain? If so, what was it, and how did it indicate he wasn’t in pain? If not, why not? Was it simply assumed that he’s experiencing anxiety/phobia and not pain?
3. The research goal was not to help alleviate his distress/pain. The research goal was specifically “increased tolerance to noise.”
Since the researchers assume his responses are anxiety/phobia based, their goal may be harmful to him.
How would you feel if someone took your shoes away and told you to walk across glass? And if you protest or try to escape, they tell you that you just need to learn how to tolerate walking across glass in your bare feet?
This is what this goal sounds like to autistic people like myself who experience pain to certain noises. I cannot gain a “tolerance” to it anymore than you could gain a tolerance to walking on glass. Trust me, I tried. For years I didn’t know I was autistic and everybody told me I was “imagining” or lying about my sensory processing issues and hyperacusis.
If this boy is in pain at these sounds, as I suspect him to be, then this goal is extremely inappropriate and could lead to horrible long term effects (burn out, more explosive behavior when he finally breaks down, alexithymia [or worsened alexithymia], and trauma responses). All of these things have been reported by myself and other autistic people who experienced authority figures and doctors telling us to learn to tolerate things that hurt us.
4. Even though the researchers already know what his reaction to these noises are, they decided they needed to test it anyway. So they set him up with a heart monitor and put him in a room and forced him to listen to these noises that he couldn’t escape or stop. After 30 seconds of him “exhibiting problem behaviors” they would give him a 30 second break, and then…do it again. They did this with various loud/distressing sounds: baby crying, sirens, fireworks, etc. And some of the sounds went all the way up to 85 dB.
Now 85 dB is loud enough that OSHA regulations require workers be required to wear hearing protection at these levels. This boy was not given hearing protection for this part.
So these researchers took someone whom they *already know* is sensitive to noise (and is most likely in pain due to this noise) and decided to subject him to it over and over again without providing relief; seemingly to gain heart monitor readings.
Even if he is only exhibiting anxiety, and not actual pain, this is cruel.
Imagine the thing you’re most afraid of, or the thing that gives you the most anxiety. Now imagine someone puts you in a room with that thing in order to record your distress levels. Now imagine you have a communication disorder that makes it difficult for you to express your distress. Once you display enough distress, they remove the thing. Then after a short time, they subject you to it again. And they do this repeatedly. And you have very little ability to withdraw consent to this treatment.
How is this in any way appropriate? This isn’t even how anxiety or phobias are treated in exposure therapy (I know, I’ve been through some of it).
Several years ago I worked with an OT in order to help me find ways to deal with my hyperacusis and sound sensitivities. At no point did she need to subject me to those sounds and record my distress levels. She got me good headphones (as well as earbuds and earplugs as backups). We practiced breathing exercises to help me calm down enough to retrieve my ear protection. But the main goal is that I always have ear protection available to me, no matter where I am. This was an empowering experience for me. I did not need to be essentially tortured in order to receive appropriate care.
As I stated earlier, hand-stimming is a common way for autistic people to regulate emotions, sensory overload, etc. This is a natural way for us to do this. Why did none of the anxiety/grounding techniques incorporate his body’s natural movements?
When I work with my therapist (and before the in-patient OT), we incorporate my natural stimming body movements into these exercises. It makes the exercises much easier for me to access cognitively when I’m triggered, in sensory overload, or in a panic attack.
6. They explicitly reject allowing him to use noise cancelling headphones/ear defenders/other over ear headphones. This is the reasoning given: “despite Aaron choosing ear plugs as a coping skill, he was able to use these to only minimally attenuate the decibel level – enabling him to still experience the noise (as opposed to avoiding through the use of noise-cancelling headphones)”This insistence on making him still experience the noise (which, I’ll remind, noise-cancelling headphones do not actually block out all noise) is based on the assumption that he’s experiencing anxiety/phobia toward the noise.
I’ve already stated that it’s highly likely he’s experiencing pain, not just anxiety, as many of us do toward certain noises.
If he’s experiencing pain, why is it important for him to still experience the noise causing him pain?
Imagine noise cancelling headphones as oven mitts. You put them on when you need them, say when you’re removing something from the oven. Now imagine someone tells you to take off the oven mitts and use hand towels instead. The hand towels provide *some* protection, but they’re harder to use, and much of the heat still comes through and threatens to burn you.
Which would you prefer to use? I’m guessing you would prefer the oven mitts!
This all goes back to that initial assumption that he’s not experiencing pain. If he isn’t in pain, then it’s ok to teach him anxiety coping skills instead of avoiding the pain. But if he is in pain, which is highly likely given the experiences and his own extreme responses, then it’s incredibly cruel to teach him to use anxiety coping skills in response and deny him the use of the simplest solution that many other autistic people use regularly.
7. After teaching him various coping techniques, they then repeat the same torturous scenarios as before, except now he gets to choose which coping strategies to use. His top two choices? Earplugs, and asking for a break!
Let’s be honest here: His top choices were not actually ear plugs and asking for a break. His top choice was “escaping the painful thing”
And let me tell you, earplugs are a last resort for me when dealing with loud noise. I can’t wear them for very long before my ears hurt. They require the use of fine motor skills which I may not have if I’m dealing with a sudden loud/painful sound. They take longer to apply. And they run the risk of ear infections if they’re not cleaned between uses (for molded plugs) or used directly out of the packaging with clean hands (single-use). They’re also harder to keep track of.
The vast majority of autistic people I know (and others with sound sensitivities) prefer over ear headphones: noise cancelling, ear defenders, and/or listening to music. My personal ranking is: 1. Over ear headphones (w/ or w/o music) 2. NC headphones (w/ or w/o music) 3. earbuds w/ music 4. ear plugs
These researchers specifically chose against the much easier to use and more effective options because they reject the idea that he’s in pain and insist it’s just a fear/anxiety response!
There are many problems with this case study: how it characterizes autistic behavior and distress responses; how it ignores the possibility that we’re in pain; how it disregarded the actual well-being of this boy; how they denied him access to the solutions that work best for the vast majority of people who share his sensitivities. And these really only scratch the surface.
Please, do better in the future. Do not approve studies about autistic people that ignore our pain. I don’t know what or if disciplinary actions can be taken against these researchers. This kind of treatment toward autistic people, especially the most vulnerable of us who have difficulties communicating, cannot be allowed to stand.
Thank you,
Andrew C. Hutsell
Dana Hunter
Confirmed geology aficionado Dana Hunter is a science writer whose work has appeared in Scientific American, the New York Times, and Open Lab. She explores the earth sciences with an emphasis on volcanic processes, regional tectonics, and the intersection of science and society, sometimes illustrated with cats. Join her at unconformity.net for epic adventures in the good science of rock-breaking.
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