It’s been a whole ten days since my last criticism of the mainstream schools, so I think it’s about time I got back to it.  As I argued earlier, this is an extremely important issue – where someone spends their days for the duration of their school career is going to have a bigger influence than any limited, short-duration set of intervention sessions.

The sensory demands of the mainstream schools are one of the biggest challenges they impose on us.  Being inside an environment that is hostile to us, that causes us to exist in a state of perpetual sensory distress (or at least perpetual anticipation of impending sensory distress), naturally impacts autistic people’s mental health, self-regulation, ability to function, ability to learn, and general well-being.

Sainsbury (2009, p. 99) illustrates the issue in a vivid passage:

“The corridors and halls of almost any mainstream school are a constant tumult of noises echoing, fluorescent lights (a particular source of visual and auditory stress for people on the autism spectrum), bells ringing, people bumping into each other, the smells of cleaning products and so on.  For anyone with the sensory hyper-sensitivities and processing problems typical of an autistic spectrum condition, the result is that we often spend most of our day perilously close to sensory overload…”

In my own childhood, having sensory sensitivities and being in a mainstream school was, by far, the worst thing about my autism.  I only had sensory meltdowns on a handful of occasions, but that was because I was allowed (thanks to intensive parental advocacy) to leave an environment when I was becoming completely overloaded.  The rest of the time, either low-level sensory distress was wearing away at me, leaving me exhausted and draining my resources, or I was anticipating the renewal of the sensory assault.  My grades slipped, I developed anxiety,[1] and I came to dread going to school.

I can’t say that the teachers were terribly helpful.  As I mentioned, only parental advocacy got me the permission I needed to leave an area when overload was imminent.  The school-based team questioned my sensory experiences, objecting that if I could tolerate this loud sound, I therefore ought to be able to tolerate that softer one – but sensory symptoms are strange and idiosyncratic; there’s more to it than simple loudness.  Or they would point out that I could tolerate this sound then, so I ought to be able to tolerate it now – but sensory symptoms worsen when we are anxious and unable to control our environments, so my sensitivities were actually continually worsening the longer I was in the mainstream setting.  Basically, the teachers wanted to view the sensory symptoms as a behaviour problem, not as a real source of distress and pain.  And my experience here was not entirely unusual (Penney, 2013, pp. 85-86).

Sadly, teachers in the mainstream just don’t get a lot of disability training.  It’s absurd, because children with disabilities will of course be the ones that need the most support from the their teachers, but many mainstream teachers have taken just one course in special education.  Autistic sensory symptoms are internal experiences that only affect us directly, and awareness of them among neurotypicals is still quite low.  If general education teachers aren’t equipped to teach children with disabilities, they certainly won’t be prepared to understand sensory sensitivities.

Now, hopefully common sense will eventually prevail and we’ll start doing more to train general education teachers in disability and autism.  (I hear that the UK has made some progress there.)  But even if we do, that won’t address all the issues.  For example, the mainstream schools have bullies, and bullies can sometimes notice and exploit sensory vulnerabilities.  One qualitative study describes a bully hissing at an autistic student (Fisher & Taylor, 2016, p. 405), and I’ve experienced similar incidents.

And even if we crack down on bullying, there are a number of sensory demands that are simply inherent to the mainstream school setting.  Particularly for students in the upper grades, schools are large, overcrowded, busy, bustling, and chaotic.  That’s not something we can deal with through simple accommodations and better understanding – sensory overstimulation is just part of the environment of a big mainstream school.  It’s in the school’s nature.

No, for those with the most serious sensory sensitivities, an alternative to the mainstream is needed.  Specialized schools for autistic children are usually much smaller than the big mainstream schools.  In these smaller schools, the bustling hordes rampaging through the hallways can be replaced by a more limited flow of students.  This can be a huge relief for many students’ sensory symptoms.

There’s also the challenge of visual overload.  The walls of mainstream classrooms seem to always be full to bursting with posters, displays, and random colourful clutter.  Some specialized schools seem intent on preserving this clutter, but it can be eliminated if students’ sensory symptoms require it.

Indeed, specialized schools can be and ought to be designed from the ground up with sensory symptoms in mind (see also Mostafa, 2014).  Corridors can be built in such a way as to minimize traffic and allow noise to escape.  Appropriate lighting can be installed.  Materials that reduce echo can be used.  Sensory refuges can be created.  Spaces can be organized so that personal space is maintained.  When a wholly new building is being constructed, I imagine that many of these design features could be incorporated into the design with minimal costs, while other, more expensive features (e.g., quiet ventilation systems) could only be installed if sufficient funding was available.

Some might say that it’s important for people to learn to cope with sensory demands and that putting them in a specialized school away from sensory stress is a bad idea, but I think that’s wrong.  If someone has a very specific sensory aversion – if they don’t like smacking sounds, or the buzzing of some machine, or something like that – then yes, gradual exposure in a safe environment might be the right approach.  But if somebody is overwhelmed by a chaotic and busy environment, exposure is the last solution we want to try.  As long as I was in the mainstream, facing daily sensory stress, my anxieties increased and my sensory sensitivities got worse.  Once I left the mainstream, once I no longer faced daily sensory distress, my sensory sensitivities got less severe and I was better able to cope with sensory distress when it arose.

Furthermore, specialized schools would allow for physical activity classes that don’t come with aversive sensory demands.  Sainsbury (2009, p. 103) notes that almost all of the autistic interviewees who contributed to her book spontaneously mentioned sports as “one of the worst features of school, combining as they did demands on physical co-ordination, sensory processing and social abilities.”  Many autistic students simply have to flee gym classes (Healy et al., 2013); I was forced to choose not to participate in “physical education” class more often than not.  Given autistic people’s lower levels of physical activity (Lobenius-Palmér et al., 2018; Stanish et al., 2017), higher levels of obesity (Broder-Fingert et al., 2014; Healy et al., 2018), and higher levels of mortality (Hirvikoski et al., 2016) in comparison to TD people, this is not necessarily an ideal solution.  But in a specialized school, physical activities can be carefully chosen and adapted in order to avoid sensory demands.

Now, to be clear, we can and should tweak the mainstream in order to improve its sensory features for autistic students.  However, for many students, this won’t be enough.  Inevitably, the large mainstream school is going to be a noisy, overstimulating environment.  That’s one of the many reasons why autistic students and their families need to have genuine choices about educational placement – an inviolable right to the mainstream if they want to be there, but also alternatives if the mainstream isn’t working.

Footnote

[1] Not formally diagnosed, but looking back, I’m fairly confident that I was clinically anxious for a while.

References

Broder-Fingert, S., Brazauskas, K., Lindgren, K., Iannuzzi, D., & Van Cleave, J. (2014). Prevalence of overweight and obesity in a large clinical sample of children with autism. Academic Pediatrics, 14(4), 408–414. https://doi.org/10.1016/j.acap.2014.04.004

Fisher, M. H., & Taylor, J. L. (2016). Let’s talk about it: Peer victimization experiences reported by adolescents with autism spectrum disorder. Autism, 20(4), 402-411. https://doi.org/10.1177/1362361315585948

Healy, S., Aigner, C. J., & Haegele, J. A. (2018). Prevalence of overweight and obesity among US youth with autism spectrum disorder. Autism. Advance online publication. https://doi.org/10.1177/1362361318791817

Healy, S., Msetfi, R., & Gallagher, S. (2013). “Happy and a bit nervous”: The experiences of children with autism in physical education. British Journal of Learning Disabilities, 41(3), 222–228. https://doi.org/10.1111/bld.12053

Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. The British Journal of Psychiatry, 208(3), 232–238. https://doi.org/10.1192/bjp.bp.114.160192

Lobenius-Palmér, K., Sjöqvist, B., Hurtig-Wennlöf, A., & Lundqvist, L.-O. (2018). Accelerometer-assessed physical activity and sedentary time in youth with disabilities. Adapted Physical Activity Quarterly, 35(1). https://doi.org/10.1123/apaq.2015-0065

Mostafa, M. (2014). Architecture for autism: Autism ASPECTSS(TM) in school design. ArchNet IJAR: International Journal of Architectural Research, 8(1), 143–158. Retrieved from https://archnet.org/publications/9101

Penney, S. C. (2013). Qualitative investigation of school-related issues affecting individuals diagnosed with autism spectrum disorder and co-occurring anxiety and/or depression. Autism Insights, 5, 75-91. https://doi.org/10.4137/AUI.S10746

Sainsbury, C. (2009). Martian in the playground: Understanding the schoolchild with Asperger’s syndrome (Rev. ed.). Thousand Oaks, CA: SAGE.

Stanish, H. I., Curtin, C., Must, A., Phillips, S., Maslin, M., & Bandini, L. G. (2017). Physical activity levels, frequency, and type among adolescents with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(3), 785–794. https://doi.org/10.1007/s10803-016-3001-4