Data-based study? – Whose data?

‘Data-based’ study – whose data?

(From: Dawn-joy Leong, Scheherazade’s Sea – autism, parallel embodiment and elemental empathy, 2016).

In 2014, I took part in a study conducted by a PhD researcher who claimed to specialise in aspects of physiological and psychological empathic and social motivation in autism. I was told in advance that the study would be about emotional vs. cognitive empathy. I remember thinking that I had read a few similar studies on this same subject, but couldn’t recall the exact titles of those papers. “Replication enforces truth,” I recall the words ‘auto-writing’ on my mental blackboard, for no apparent conscious reason. The laboratory was situated in a building tucked away behind another more prominent block. To access the lift that would take me up to the laboratory, I walked through a tunnel-like corridor in the middle of a food court occupying the ground level of the block in front. The combined smells of hot food wound around my neck like a hastily knitted scarf of cheap synthetic yarn that had been retrieved from vats of stale cooking oil. Greasy scent bubbles settled themselves on my hair, and seeped into the fabric of my clothing as I traversed the passageway. The ceiling was low, there was a stifling thick air of oppression hanging around the lift lobby. I sat down on a slimy vinyl seat to compose myself, which was a juxtapositional irony because the grime from the seat hurt the fabric of my jeans, the stale thick air wrapped around me in sickening mockery, and I felt my senses already begin to go into high-alert mode. Thankfully, Lucy, my greyhound psychiatric assistance dog, was with me. Her calm concrete presence, leaning against my legs, reminded me to stay focused on the mission, and being able to establish tactile connection with her warm body and silky soft fur temporarily disconnected my senses somewhat from the assaultive sensory effects.

After checking my iPad for the umpteenth time to make sure I was in the right place, I entered the lift. I do not have a phobia for enclosed spaces, in fact, I actually enjoy being in some cosy spaces, provided the other sensory elements are pleasant. However, lifts in public spaces usually contain myriad smells that gather and stew inside, layer upon layer deposited by each new transient occupant. Thankfully, the journey was not a long one, and I was greeted at the landing when the lift door opened. The researcher showed me into the laboratory, chatting away in a most friendly manner. She held open the first door, and it groaned in mid-tonal jaggedness. I managed to not register the exact pitches, determined to focus on her verbal chatter. A smell of damp and rot, however, rose from the floor carpets in forceful affrontation. I placed Lucy’s mat in a corner, and told her to settle. She looked uncomfortable – she is my sensory-alert dog, after all – but she complied. It was a wet winter’s day, I felt cold, and the researcher switched on a tiny electric heater for me. As it rotated unsteadily on its cheap plastic axis, it grunted and cackled. The mix of damp in the wider atmosphere and the directed drafts of dry air from the heater began to trigger headache, and pain in my respiratory passageways.

The cacophonic counterpoint of sensory distress continued.

I am moving between the realm of past and present, the vivacious alacrity and the desperate dismay still a living vocal entity in my memory. It was a very long questionnaire. Tick, tick, tick the boxes. More listening to verbal words. Poco a poco– little by little – the semantic meanings become too difficult to register. I think I am still understanding the gist of it, but truly, I know I have lost the battle for finer detail. The pain mounts, I do not know from where, but it is at this point dancing around my head, like monkeys fighting over a piece of bread tossed carelessly by gawking human tourists. I am filling in the form, at first carefully, but very soon, just fast and furiously because my senses are beginning to tell me that it is imperative to leave the room. Then we move to the computer screen. It is an old, stain and grime encrusted tungsten-tubed box. The screen flickers alarmingly, but the researcher seems oblivious. The lights above are screaming, and still the researcher takes no notice. She affixes onto various parts of my skin little electric sensors, for data gathering – something about heart rate and whatnot. I felt myself slipping into illucidity. My body was there, my trained responses intact, I knew I just had to continue with this performance of normalcy, because social compliance has been so deeply and forcefully ingrained into my consciousness. Then began the numerous tests on the computer. Poorly drawn green and blue stick figures (which I am told ought to represent human beings) appear on the flickering screen, while the light from the window reflects against the screen obscuring some parts. Then a few short video clips appear, and I notice with a wry grimace the vintage style of their clothes, the grainy texture of the images, all probably very old clips from the 1970s or 1980s. I am supposed to make judgments about what they are trying to convey, and about my ‘feelings’ at the time. I struggle bravely onwards.

The minutes turn into hours. Tick, tock, tick, tock. Lucy gets up from her mat, she is doing her job as my sensory alert dog. She is telling me to leave this terrifyingly oppressive space. She is telling me that I am verging on meltdown and I need to perform some form of Self-intervention to interrupt the process. However, the tests are not completed yet. No. I have to stay. I am sorry, Lucy. I feel the rippling vibrations emanating from her being, they are expanding, getting louder and louder, poco a poco. I know she is becoming extremely anxious for me, and perhaps even for herself. The door of the toilet in the next room utters a long, shrill and slightly warped C-sharp every few minutes, announcing the arrivals and exits of perusers. That dreadful little oscillating heater is droning a low, somewhat irritatingly wobbly tritone of E flat and A – scratching, bumping, teetering as it turns. The room becomes too warm, the smell from the carpet begins to reach beyond olfactory channels and permeats my skin, wrapping around my eyes, and I taste it in my tongue as I exhale. Empathy? What is empathy? Oh, yes, I am here as a test subject in some study about empathy? The space between my eyes contract into a tiny tight earwig. I do not remember anymore what I am instructed to do. I just click at the buttons before me while the poorly drawn stick caricatures perform their grisly contortions.

Finally, I am informed that I have come to the end of the ordeal. The sensors are removed and I am allowed to leave. I literally force polite social words out of my mouth, my tongue and lips felt soaked in a sour yellowish mire, swollen and heavy with air-borne filth such that they detach from my conscious sense of belonging in the body. I think I thanked the researcher, I must have, though I cannot be certain, and left. Lucy was most relieved too. However, it was not yet the end of the sensory nightmare for me. We had to make out way back to our lodgings, but that is another story, another mini-chapter in the ongoing never ending saga of life with autistic hypersensitivity, set in a world that seems so lacking in sensory awareness.

A couple of days later, after my brain had recouped some of its lost verbality, I wrote an email to the researcher, simply informing her that I felt the session was overly long, the physical space was inclement, and the data she was gathering would be compromised, because she failed to take into account the sensory acuities and possible integration challenges of her subjects. Her reply came about three weeks later. “Obviously being a PhD student I don’t have a lot of control over the lab and I share it with many other people.” She signed off with, “I have passed on this information to my supervisor.” I was unsure what to make of it then, and I remain somewhat nonplussed and perplexed even now.

Some months afterwards, I noticed that the researcher had presented a paper at a supposedly well respected autism conference, and later, an article on the same subject appeared in a journal. I note the claims made and realise that she had already predicted the outcome during her conversation with me, that is, at the beginning of the test session when my mind was still able to coherently register spoken chatter.

The experience was disturbing on more than just a personal level. I wondered about the many other autistic participants in this study, how they managed to cope, and whether I was the only one who detailed the sensory challenges. It would not be surprising if nobody else brought the issue to the foreground. The study asked for “high functioning” autistic volunteers. Autists, especially those living and functioning in normative settings such as this, would have by now been ‘programmed,’ either casually or systematically via therapies like ABA (Applied Behavioral Analysis) to ‘de-sensitise’ and not react in ways that may cause offense or alarm to the general populace. The reality for many autists is simply that of deliberate self-suppression, and the effort, whether conscious or subconscious, can often be so considerable that the person fixates upon getting through the task at hand in order to escape the overloading situation. Perhaps the majority of autists participating in such laboratory tests may not even be consciously aware that their sensory dissonances would affect the study. In addition, since vocalising the facts of autistic hyper-reality is frowned upon in the wider social context, there would be absolutely no incentive to speak out. Viewed from this perspective, the autist exists as the subaltern acculturated to neurotypical colonial dominion: innate identity is suppressed, and deemed unworthy of notice or affirmation.

Why is the voice of lived reality being deliberately silenced against the enacted façade of (so-called) ‘superior scientific knowledge’? What is the purpose of studying a human subject if the researcher does not take time and make sincere efforts to listen to and consider seriously the importance of personal insights from the subject of study? The unfortunate irony of the situation is that if the articulations of autistic persons were better heeded, more accurate data would be gleaned about the nature of the so-called ‘social impairments,’ which have puzzled researchers. Research needs to place greater focus on extant features in the context of comprehending autistic embodiment, examining autism from an organic perspective, instead of persistently looking at aetiological irregularities from a biased, non-autistic viewpoint with the aim to repair what is essentially viewed as broken.

Sensory atypicality may be extremely challenging, however, the ability to perceive outside conventional infrastructures definitely has many powerful benefits. Ignoring this key functional dimension, and trying to counteract its cogency is not only damaging to the autistic individual, but also deprives the wider society of potentially valuable reciprocity.