This is the first in a five-part series of posts where Volunteer Contributor Patrick Dwyer takes a deep dive into autistic sensory sensitivities on campus. These blogs define, explore, contextualize, and provide suggestions for dealing with campus issues that arise from a variety of sensory challenges.
I always used to find that my sensory sensitivities were the single most impairing symptom of my autism. Fortunately for me, my sensitivities aren’t nearly as severe today as they used to be, but there was a time when I could barely function in large, crowded spaces. Unfortunately, those who designed our world haven’t really taken autistic sensory sensitivities into account, so my sensory sensitivities meant that a very large portion of the world was effectively off-limits to me.
If you have sensory sensitivities, I suspect you won’t be surprised to learn that they are related to autistic people’s anxiety (Mazurek et al., 2013), participation in daily activities (Little et al., 2015), and quality of life (Lin & Huang, 2017). You might also be able to understand why sensory sensitivities are often reported as a problem in the college environment (Anderson et al., 2017).
This is the first in a series of posts in which we’ll be discussing sensory sensitivities at college. In this post, I’ll do my best to introduce the problem and provide a sort of vocabulary and framework that we can use to help understand our own sensory experiences. In following posts, I’ll discuss how sensory sensitivities might manifest on the college campus and how they can be affected by internal stresses and external contexts. Then, I’ll do my best to suggest coping strategies. Finally, we’ll discuss food.
This will be the most technical of the posts, but I think one of the reasons why it can be difficult to discuss our sensory experiences is that they are genuinely difficult to understand. Not only are they internal and subjective, but the English language doesn’t really have the vocabulary to describe them well. However, there’s a very interesting article that explains how communities of autistic adults, through discussing sensory processing with one another, are able to refine their understanding of their own sensory processing (Belek, 2018). My hope is that this post will help you better understand your own sensory symptoms.
Unfortunately, there’s also another reason why it can be difficult to discuss sensory experiences: everybody’s sensory experiences are unique. You’ve probably heard the old autism quote, “If you’ve met one person with autism, you’ve met one person with autism,” and sensory symptoms might be among the most variable and idiosyncratic symptoms in what is already a very heterogeneous autism neurophenotype.
Sensory Response Patterns
Fortunately, researchers have started to parse and break down the heterogeneity of sensory processing. One very general distinction can be drawn between patterns of sensory seeking, hypo-sensitivity, hyper-sensitivity, and enhanced perception.
Sensory seeking behaviour isn’t the focus of this discussion, but it refers to how one might enjoy a particularly sensory input so much that one would try to experience it repeatedly. For example, a sensory seeker might seek out certain tastes, or colours.
Hypo-sensitivity is an under-sensitivity to sensory inputs, perhaps even to the extent that one might not register certain inputs at all. There are anecdotes about some autistic people being hypo-sensitive even to extreme pain. However, hypo-sensitivity isn’t the focus of this discussion either.
Hyper-sensitivity refers to an aversive experience of being over-sensitive to sensory stimuli. Now, being hyper-sensitive doesn’t necessarily mean that one can hear sounds that others can’t, that one can distinguish between sounds that others would think the same, or that one has better visual acuity – those are examples of what we might call enhanced perception. Instead, hyper-sensitivity simply means that one finds the sensory stimulus unpleasant and overwhelming, regardless of whether one has enhanced perception or not. When I speak simply of “sensory sensitivity,” I really mean sensory hyper-sensitivity, and hyper-sensitivity is the focus of this discussion.
One can also distinguish between different types of sensory sensitivity on the basis of sensory modality. Obviously, we have the senses of touch, vision, taste, smell, and hearing. With hearing, sensory sensitivity would manifest as an aversive reaction to certain sounds, and so on and so forth for the other senses.
We also have the vestibular and proprioceptive senses, which are much less well-known. I don’t want to get bogged down in details, but these senses relate to balance and movement, and hyper-sensitivity with these senses might manifest through symptoms like a susceptibility to dizziness, or discomfort on moving surfaces like elevators.
Recently, realizing how much variability there is in sensory response patterns in autism, researchers have started trying to classify autistic children and adults into subtypes on the basis of their sensory processing. One study by Ausderau and colleagues (2016) found four subtypes:
- A mild subtype, with relatively normal sensory processing on all four patterns;
- An attenuated-preoccupied subtype, with hypo-sensitivity and elevated sensory seeking;
- A sensitive-distressed subtype, with hyper-sensitivity and enhanced perception; and
- A severe subtype, with atypical sensory processing across all patterns (i.e., hyper-sensitivity, hypo-sensitivity, sensory seeking, and enhanced perception).
Other studies, using different methods and samples, have found somewhat different patterns (Ben-Sasson et al., 2008; Hand et al., 2017; Lane et al., 2010, 2014; Little et al., 2017; Tomchek et al., 2018; Uljarević et al., 2016). Unfortunately, all of these studies are based on parents’ reports of their children’s sensory symptoms, and it is important to recognize that the outward appearance of sensory behaviours might not always give us good clues about an individual’s internal experience (Grandin & Panek, 2013).
To date, only one study has used autistic people’s self-reports to put people in groups based on their sensory symptoms. Elwin and colleagues (2017) found approximate equivalents of the mild and severe subtypes from above, but they found only a single intermediate subtype, which was characterized by elevated hyper-reactivity and elevated sensory seeking.
This research literature remains very much in its infancy. The main conclusion I would draw from it is that autistic people’s sensory processing and sensory sensitivity are very heterogeneous, varying extensively from person to person, but that we can find autistic people who are more similar to one another in terms of their sensory processing.
There’s also an important caution that I should add here. When I described some of the subgroups above, I suggested that some groups contained people with enhanced perception. However, that might not really be true, because it turns out that the evidence for enhanced perception in autism comes mainly from questionnaire reports. If you look at objective measures of whether autistic people have perceptual abilities beyond those of neurotypical people, you’ll find a lot less support for enhanced perception. There’s evidence that some of us might be better at the discrimination of frequency/musical pitch (Jones et al., 2009), and some other studies also hint at genuinely enhanced perception in autism. However, most of the available evidence suggests that autistic people are not necessarily perceiving sensations that neurotypical people can’t detect, but that autistic people might be more likely to consciously notice and be bothered by sensations. In short, you might think you have enhanced perception, but it’s actually quite likely that you have hyper-sensitivity.
I do think it’s pretty easy to see how someone with hyper-sensitivity might report on a questionnaire that they actually have enhanced perception. After all, if you are more likely to consciously notice sensations and be bothered by them, the most obvious explanation might be that you are perceiving sensory stimuli that other people can’t detect! But that might not be true: the hyper-sensitivity might be the result of later, higher-level processing in the brain, rather than basic perception itself. I used to think I had enhanced perception, but I now doubt that I do.
Of course, this doesn’t mean that our sensory experiences are invalid: hyper-sensitivity is still very real, and it can be very distressing.
What Does Sensory Sensitivity Feel Like?
Unfortunately, it’s very hard to describe what hyper-sensitivity feels like, and I suspect the experience varies a lot from person to person. I might characterize my own experience as a mental pain: unless I’m experiencing a tactile sensory input, I don’t have physical pain localized to any part of the body, but I do feel that something hurts in my mind. I also feel overloaded: the sensory input, and the associated mental pain, comes to occupy more and more of my attention and eventually overwhelms me. Other autistic people also describe sensations of pain and of being overloaded, so I hope this isn’t too far off from the norm (but some of their sensations of pain might manifest as physical headaches, which are a bit different from my more abstract mental pain).
It also seems like there’s a couple of different reactions to these experiences of sensory sensitivity. Communities of autistic adults have used the terms shutdown and meltdown to distinguish these (Belek, 2018). Shutdown is essentially internal: one becomes overloaded by sensory stimuli, and as a result, one’s ability to intentionally engage with one’s environment is lost; the body becomes unresponsive to the outside world. On the other hand, in a meltdown, instead of the body becoming unresponsive, it lashes out – perhaps violently, by throwing things, hitting or slamming things, etc.
Obviously, violent meltdowns are a very risky activity for an adult to engage in, as violent behaviour towards objects or other people could lead to involvement in the criminal justice system. Any criminal or illegal behaviours that one engages in during a meltdown are still criminal or illegal, irrespective of the sensory cause. Thus, as adults, we have very good reason to always make sure that we never lose control of our behaviour in a meltdown.
However, I should also say that there might be one kind of hyper-sensitivity that’s a bit different from the experience of pain and overload from sensory inputs. Some people describe being hyper-sensitive to relatively subtle stimuli: soft sounds, flickering lights, etc. In these cases, the hyper-sensitivity might be less about pain and overload, and more about distraction, irritation, and an inability to focus. Clearly, this could be very problematic for a college student attempting to focus on their studies.
So, what do you think? Can your own sensory experiences fit into this framework? Does the framework help you understand your sensory experiences? Is there something that I’ve left out of this framework? Please feel free to comment and join the discussion!
You can also find more resources on autistic sensory sensitivities on Patrick’s blog.
Anderson, A. H., Stephenson, J., & Carter, M. (2017). A systematic literature review of the experiences and supports of students with autism spectrum disorder in post-secondary education. Research in Autism Spectrum Disorders, 39, 33–53. https://doi.org/10.1016/j.rasd.2017.04.002
Ausderau, K. K., Sideris, J., Little, L. M., Furlong, M., Bulluck, J. C., & Baranek, G. T. (2016). Sensory subtypes and associated outcomes in children with autism spectrum disorders. Autism Research, 9(12), 1316–1327. https://doi.org/10.1002/aur.1626
Belek, B. (2018). Articulating sensory sensitivity: From bodies with autism to autistic bodies. Medical Anthropology. Advance online publication. https://doi.org/10.1080/01459740.2018.1460750
Ben-Sasson, A., Cermak, S. A., Orsmond, G. I., Tager-Flusberg, H., Kadlec, M. B., & Carter, A. S. (2008). Sensory clusters of toddlers with autism spectrum disorders: Differences in affective symptoms. Journal of Child Psychology and Psychiatry and Allied Disciplines, 49(8), 817–825. https://doi.org/10.1111/j.1469-7610.2008.01899.x
Elwin, M., Schröder, A., Ek, L., Wallsten, T., & Kjellin, L. (2017). Sensory clusters of adults with and without autism spectrum conditions. Journal of Autism and Developmental Disorders, 47(3), 579–589. https://doi.org/10.1007/s10803-016-2976-1
Grandin, T., & Panek, R. (2013). The autistic brain: Helping different kinds of minds succeed. New York: Mariner Books.
Hand, B. N., Dennis, S., & Lane, A. E. (2017). Latent constructs underlying sensory subtypes in children with autism: A preliminary study. Autism Research, 10(8), 1364–1371. https://doi.org/10.1002/aur.1787
Jones, C. R. G., Happé, F., Baird, G., Simonoff, E., Marsden, A. J. S., Tregay, J., … Charman, T. (2009). Auditory discrimination and auditory sensory behaviours in autism spectrum disorders. Neuropsychologia, 47(13), 2850–2858. https://doi.org/10.1016/j.neuropsychologia.2009.06.015
Lane, A. E., Molloy, C. A., & Bishop, S. L. (2014). Classification of children with autism spectrum disorder by sensory subtype: A case for sensory-based phenotypes. Autism Research, 7(3), 322–333. https://doi.org/10.1002/aur.1368
Lane, A. E., Young, R. L., Baker, A. E. Z., & Angley, M. T. (2010). Sensory processing subtypes in autism: Association with adaptive behavior. Journal of Autism and Developmental Disorders, 40(1), 112–122. https://doi.org/10.1007/s10803-009-0840-2
Lin, L.-Y., & Huang, P.-C. (2017). Quality of life and its related factors for adults with autism spectrum disorder. Disability and Rehabilitation. Advance online publication. https://doi.org/10.1080/09638288.2017.1414887Little, L. M., Ausderau, K., Sideris, J., & Baranek, G. T. (2015). Activity participation and sensory features among children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 45(9), 2981–2990. https://doi.org/10.1007/s10803-015-2460-3
Little, L. M., Dean, E., Tomchek, S. D., & Dunn, W. (2017). Classifying sensory profiles of children in the general population. Child: Care, Health and Development, 43(1), 81–88. https://doi.org/10.1111/cch.12391
Mazurek, M. O., Vasa, R. A., Kalb, L. G., Kanne, S. M., Rosenberg, D., Keefer, A., … Lowery, L. A. (2013). Anxiety, sensory over-responsivity, and gastrointestinal problems in children with autism spectrum disorders. Journal of Abnormal Child Psychology, 41(1), 165–176. https://doi.org/10.1007/s10802-012-9668-x
Tomchek, S. D., Little, L. M., Myers, J., & Dunn, W. (2018). Sensory subtypes in preschool aged children with autism spectrum disorder. Journal of Autism and Developmental Disorders. Advance online publication. https://doi.org/10.1007/s10803-018-3468-2
Uljarević, M., Lane, A., Kelly, A., & Leekam, S. (2016). Sensory subtypes and anxiety in older children and adolescents with autism spectrum disorder. Autism Research, 9(10), 1073–1078. https://doi.org/10.1002/aur.1602