Wait, Who Said Autistic Sensory Symptoms Aren’t Real?
Last week, I was unpleasantly startled to read in a Spectrum News article that the latest draft of the International Classification of Diseases, the ICD-11, excludes differences in sensory processing from its list of autism symptoms.
I thought we were over this. The ICD-11’s counterpart, the DSM-5, now includes sensory symptoms. I still grumble a little that they’re just lumped as a single symptom under the general category of restricted and repetitive behaviours, but I’m at least happy that they’re there. Given the general decision that was made to have DSM-5 and ICD-11 parallel each other, I’m puzzled as to what possible reason there could be to specifically exclude sensory symptoms from ICD-11.
Autistic people have been saying for a very long time that sensory differences are real, and that they’re important. Unfortunately, these sensory differences are, by their nature, internal, conscious, lived experiences of autistic people. Only we can perceive them. Neurotypicals around us, however well-intentioned they may be, cannot directly experience the world as we do. Therefore, it’s taken a long time for the reality of sensory experiences to be recognized.[1]
But we now have good evidence of the reality of autistic sensory experiences. For example, we know that autistic people experience discomfort in response to softer sounds than neurotypicals (Khalfa et al., 2004). Furthermore, we know that sensory symptoms are extraordinarily common in autism: as many as 94% of autistic people report extreme levels of sensory processing (Crane et al., 2009).
It seems deeply peculiar that any feature present in 94% of the people with a given neurotype, and that is much rarer outside that neurotype, would not be considered a diagnostic symptom of that neurotype.
Real-Life Importance
However, the exclusion of sensory symptoms from the ICD isn’t just or mainly a problem with diagnostic classification. It is far more than that. It is a problem because it delegitimizes sensory symptoms themselves. Clinicians will look at the ICD-11 and see nothing about sensory symptoms, and as a result, many of them won’t take sensory symptoms seriously. That attitude, then, will get filtered down to professionals. Similarly, it might become harder for researchers to secure funding for sensory research.
This will have real-life consequences, because sensory symptoms are important in real life. When I was in middle school, my parents and I had to struggle constantly to convince others that my sensory symptoms were real. I couldn’t stand the noise. I had to escape. Yet some people in the school-based team thought my sensory symptoms were a behaviour problem, an attempt to avoid demands in the school environment. Sometimes, when I became completely overloaded and when I couldn’t escape the stimulation, I had meltdowns. Eventually, the situation became so bad that I left the mainstream school. That helped.
You see, as long as I was forced to be in the distressing sensory spaces, I was learning to expect sensory distress. Because I expected sensory distress, I became anxious. Because I was anxious, the sensory distress was only exacerbated. There was a feedback loop, and my sensory symptoms (and mental health) were getting worse and worse.
Leaving those environments behind solved the problem. But for many autistic people, that isn’t possible. Our world today is not designed with sensory symptoms in mind. School corridors, school PE classes, indoor shopping malls, public transit, postsecondary lecture halls, and many other environments that are difficult or impossible for many of us to avoid in day-to-day life can be overwhelming for many autistic people.
If autistic people with sensory sensitivities grow up being continually exposed to overwhelming environments that inflict sensory distress, they will become more anxious. This anxiety will then reduce their ability to function in the adult world. It will negatively affect the transition to adulthood. It’s telling that autistic adults who are employed or engaged in educational study are less likely to be anxious than those who are unemployed and unengaged (Knüppel et al., 2018).
Thus, there are numerous reasons to believe that sensory sensitivities are extremely important in the real world:
- Sensory sensitivities inflict distress;
- Sensory sensitivities can, if overwhelming stimuli are inescapable, cause meltdowns;
- Sensory sensitivities can, with repeated exposure to distressing stimuli, cause anxiety;
- The anxiety caused by sensory sensitivities can be distressing;
- The anxiety caused by sensory sensitivities can reduce autistic people’s ability to function in the world in many different ways (e.g., socially, academically, vocationally); and
- Sensory sensitivities can force people to avoid certain environments and therefore create barriers to inclusion and everyday functioning.
I’m sure I could think of others, but I think this suffices for now. Back when my sensory sensitivities were most severe, they were the most disabling symptom of my autism.[2] Autistic people have dropped postsecondary classes (Willey, 1999) and lost jobs (Shore, 2012) because of sensory symptoms.
Theoretical Importance
Sensory sensitivities aren’t only important because of autistic people’s real-life experiences, though. Numerous studies emphasize that autistic sensory differences emerge very early in development (e.g., Baranek, 1999; Damiano-Goodwin et al., 2018; Falck-Ytter et al., 2018; Mulligan & White, 2012; Riva et al., 2018). In contrast, social-cognitive differences might not emerge until somewhat later.
Now, I’m not necessarily saying that sensory sensitivities “cause” autism or anything, but this early emergence should be taken into account as we theorize about autism. The intense world theory (Markram & Markram, 2010) suggests that autistic people have overwhelming experiences because of fragmented, hyper-focused perception and attention; this theory could clearly account well for many sensory symptoms. Similarly, the “Bayesian” theory suggests that autistic people have weaker prior expectations about the world (Pellicano & Burr, 2012) or a stronger focus on posterior sensory information (Karvelis et al., 2018); again, this approach accounts for sensory differences quite well (Goris et al., 2018).
Even if we do not wish to venture into the rarefied realm of grand theories of autism, sensory differences still have theoretical importance. We have already seen that sensory sensitivities can cause anxiety, which in turn interferes with autistic people’s ability to function in social and other lived contexts. Furthermore, a recent study suggests that sensory distraction can disrupt autistic people’s ability to focus on social information (Green et al., 2018). Thus, repeated experiences of sensory distraction and distress could have a cascading effect on social skills, in addition to the effects of anxiety on real-life social abilities.
Conclusion
With all this in mind, I can’t see why sensory sensitivities aren’t in the proposed ICD-11. Given how common they are in autism, one would think they would be diagnostically useful. One would also think that they would have some theoretical importance, given that they emerge very early in development. And most importantly of all, given how important sensory symptoms are in autistic people’s lives, and how easy it is for others around the autistic person to dismiss the reality of sensory symptoms that they can’t experience for themselves, one would think that we would want to make it very clear that these sensory symptoms exist.
I’m still no great fan of the DSM-5, with its horrible stigmatizing language and everything, but I suddenly find myself much more appreciative of its virtues.
Does anyone else have thoughts about this? Please add comments below!
Footnotes
[1] This is very ironic, because it’s always autistic people who get blamed for poor theory of mind.
[2] Technically the sensory symptoms don’t become disabling until you toss in environments that are not designed with sensory symptoms in mind, but you know what I mean.
References
Baranek, G. T. (1999). Autism during infancy: A retrospective video analysis of sensory-motor and social behaviors at 9-12 months of Age. Journal of Autism and Developmental Disorders, 29(3), 213–224. https://doi.org/10.1023/A:1023080005650
Crane, L., Goddard, L., & Pring, L. (2009). Sensory processing in adults with autism spectrum disorders. Autism, 13(3), 215–228. https://doi.org/10.1177/1362361309103794
Damiano-Goodwin, C. R., Woynaroski, T. G., Simon, D. M., Ibañez, L. V., Murias, M., Kirby, A., … Cascio, C. J. (2018). Developmental sequelae and neurophysiologic substrates of sensory seeking in infant siblings of children with autism spectrum disorder. Developmental Cognitive Neuroscience, 29, 41–53. https://doi.org/10.1016/j.dcn.2017.08.005
Falck-Ytter, T., Nyström, P., Gredebäck, G., Gliga, T., Bölte, S., & The EASE Team (2018). Reduced orienting to audiovisual synchrony in infancy predicts autism diagnosis at 3 years of age. Journal of Child Psychology and Psychiatry. Advance online publication. https://doi.org/10.1111/jcpp.12863
Goris, J., Braem, S., Nijhof, A., Rigoni, D., Deschrijver, E., Van de Cruys, S., … Brass, M. (2018). Sensory prediction errors are less modulated by global context in autism spectrum disorder. Biological Psychiatry: Cognitive Neuroscience and Neuroimaging, 3(8), 667-674. https://doi.org/10.1016/j.bpsc.2018.02.003
Green, S. A., Hernandez, L. M., Bowman, H. C., Bookheimer, S. Y., & Dapretto, M. (2018). Sensory over-responsivity and social cognition in ASD: Effects of aversive sensory stimuli and attentional modulation on neural responses to social cues. Developmental Cognitive Neuroscience, 29, 127–139. https://doi.org/10.1016/j.dcn.2017.02.005
Khalfa, S., Bruneau, N., Rogé, B., Georgieff, N., Veuillet, E., Adrien, J.-L., … Collet, L. (2004). Increased perception of loudness in autism. Hearing Research, 198(1–2), 87–92. https://doi.org/10.1016/j.heares.2004.07.006
Karvelis, P., Seitz, A. R., Lawrie, S. M., & Seriès, P. (2018). Autistic traits, but not schizotypy, predict overweighting of sensory information in Bayesian visual integration. ELife, 7, e34115. https://doi.org/10.7554/eLife.34115
Knüppel, A., Telléus, G. K., Jakobsen, H., & Lauritsen, M. B. (2018). Characteristics of young adults with autism spectrum disorder performing different daytime activities. Journal of Autism and Developmental Disorders. Advance online publication. https://doi.org/10.1007/s10803-018-3730-7
Markram, K., & Markram, H. (2010). The intense world theory – A unifying theory of the neurobiology of autism. Frontiers in Human Neuroscience, 4, 224. https://doi.org/10.3389/fnhum.2010.00224
Mulligan, S., & White, B. P. (2012). Sensory and motor behaviors of infant siblings of children with and without autism. American Journal of Occupational Therapy, 66(5), 556–566. https://doi.org/10.5014/ajot.2012.004077
Pellicano, E., & Burr, D. (2012). When the world becomes “too real”: A Bayesian explanation of autistic perception. Trends in Cognitive Sciences, 16(10), 504–510. https://doi.org/10.1016/j.tics.2012.08.009
Riva, V., Cantiani, C., Mornati, G., Gallo, M., Villa, L., Mani, E., … Molteni, M. (2018). Distinct ERP profiles for auditory processing in infants at-risk for autism and language impairment. Scientific Reports, 8: 715. https://doi.org/10.1038/s41598-017-19009-y
Shore, S. (2012). Chapter 2: Stephen Shore. In T. Grandin, Different…Not less: Inspiring stories of achievement and successful employment from adults with autism, Asperger’s, and ADHD (pp. 43-72). Arlington, TX: Future Horizons.
Willey, L. H. (1999). Pretending to be normal: Living with Asperger’s syndrome. London, UK: Jessica Kingsley Publishers.
5 thoughts on “Wait, Who Said Autistic Sensory Symptoms Aren’t Real?”
“For example, we know that autistic people [feel] discomfort in response to softer sounds than neurotypicals (Khalfa et al., 2004).”
Try sounds inaudible to other humans; dog whistles in my case. Another thing I’ve noticed is that in a room lit only by daylight, I struggle to see because the room is so much darker to me than the window is. So I think you’re right; eliminating the very different sensory perception from the assessment criteria for autism is very dangerous and will lead to high rates of (literally) unmitigated disability.
Sensory differences are real. I’m a migraineur, and experience, as do other migraineurs, sensory fluctuation in the prodromal stage, including visual disturbances, enhanced sense of smell, noise and light sensitivity. I have briefly gone completely blind (once only) and lost the hearing in one ear on other occasions. I also experience intermittent numbness in my face and numbness and tingling in one arm. These symptoms are all recognised as being part of migraine, which is a neurological condition. Why would one not believe similar accounts from autistic people? It is very much neurological in origin.
Hello Patrick, Sorry my reply is sometime after your post, I have just come across it.
As an autistic person, I am rather baffled as to why differences in sensory processing have been excluded from ICD-11. Surely, most autistic people would find this exclusion difficult to reconcile with their personal experience.
To drop sensory processing from the diagnostic schedule at a time when the classical hypothesis of a faulty, innate ‘Theory of Mind’ is increasingly being challenged by other, and – to my mind – more convincing accounts, can only be described as bizarre.
4E cognition, predictive processing, active inference and lately, Cecilia Heyes’ cognitive gadgets, all offer a more compelling account. They also place sensory processing at the heart of social cognition.
But what do I know? I have only been autistic for 63 years. The attitude of many in the psychology and psychiatry professions towards the autistic community, would make a 19th century anthropologist squirm with embarrassment.
Great blog, by the way. Graham.
Patrick,
This is such a great post, (says me, who isn’t autistic)! The middle school sensory discomfort you describe is exactly what my son describes. Yet, as you suggest, my son’s resultant behaviour was always what troubled school staff. I am not a researcher. I can’t always, (or often), think of ways to measure what my son is experiencing. What I am sure of, however, is that you can’t know his internal state by looking at him, or by relying on the wrong measures. Yet, here we are. The sensory symptoms my son experiences are deeply connected with his level of anxiety, and he would begin to lose control of his body, and script phrases frantically, (much to his great dismay). This worked in a nasty circle. Like you, he came to expect stress at school, and eventually had to leave. The burden seemed always to be on my son to learn to cope, rather than educators to understand what was underlying the “behaviour”.
I guess my rambling point here is that our heavy reliance on quantifiable research can be harmful to the population it is meant to help. Do we really need to “measure” sensory input to believe autistics? Must we wait for the double blind studies (for example) to believe that, indeed, what autistics say about their sensory experiences is accurate? Do we say, “there is no proof that sensory overload cause this behaviour”, and thus, stick with the behavioural research merely because the research exists at all?
It is time autistic researchers, (and autistics at all) are not only consulted, but are considered the primary experts. It just seems as though research should be guided by people who are actually experiencing what we seek to describe or explain. That science is observable surely cannot really mean that we merely look at autistics, and know them–which somehow seems to guide some researchers–and thus, clinicians and educators.
I realize my observations are very unscientific. I know. It just seems as the the ICD-11 might be going backwards. It really just seems to add to the general misunderstanding–though again–I am clearly no expert.
Thanks for your posts, they’re so insightful.
Damon’s mum
Thanks for your comment (and your kind words)! I’m sorry (but not terribly surprised) to hear that the schools haven’t changed much in the years since I left them.
I really appreciated your point about the need to believe autistic people’s own voices. Right now, most of the research on sensory processing in autism uses parent reports, did you know? It’s very interesting, because while you are obviously very aware of your son’s internal sensory experiences, that’s because you’ve heard him describe them. In fact, you explicitly say you can’t tell his internal state by looking at him. If we’re researching sensory symptoms, why then would we ask you and ignore him? But that’s exactly what many studies have done. That’s something I love to rant about, and Temple Grandin has also pointed out the problem.
So I agree that we urgently need to allow more autistic people’s voices to be heard in research. Qualitative methodologies can be quite rigorous these days, and they’ve already given us some great insights into autism. And as for how we could give autistic people a role in shaping the research agenda, I jotted down some thoughts in another post – http://www.autisticscholar.com/grants-journals/.
Lastly, I want to reassure you that I don’t think we need to worry about being “unscientific” here. Sure, giving autistic people (and their families) a greater role in research would mean changing the scientific process a little, but is that less “scientific” than having neurotypicals in an ivory tower exercise all the control over research? I don’t want to sound like a postmodernist or something, but nobody in research is objective – whether they’re autistic or neurotypical. But representing lots of voices would at least help us avoid the problems that always come when any one group holds all the power. It wouldn’t make us objective, but broader representation would at least allow us to more easily challenge problematic subjective views held by people from any given constituency.
I certainly think that there is some value in your “very unscientific” thoughts that can’t be found in many of the “scientific” papers I’ve read…