Generalizing Standards for Autism Sensory Rooms

Not all sensory rooms are alike. When autistic people think of sensory rooms, they imagine a room designed for sensory deprivation for calming effects. When designers imagine sensory rooms, they try to cram in as much sensory information to satisfy all assumed criteria. Autistic people have preferences that vary so much, that sensory integration disorder was removed from the DSM-5. The reasoning was that if a there is no way to standardize an assessment for these differences, then there is no way to make a diagnosis, and then treat it.

Autistic people still have these sensory issues, even if the DSM no longer recognizes it. Sensory issues are prevalent in every type of neurodevelopmental disorder, such as ADHD, Angelman syndrome, Fragile X syndrome, Down syndrome, traumatic brain injury (TBI), and Cerebral Palsy. All around the world, schools, retail chains, and airport, are all trying hard to accommodate these sensory issues. The most important thing for these designers to know is that even when they consult with one or two autistic people, they still are probably lacking on specific fundamentals based on a generalized whole.

Sensory “issues” stem from a neurological processing difference. Some autistics have heightened sensory perceptions, where the world is more vivid and noisy than to a neurotypical person. Other autistics have low perceptions, and can seem indifferent to the world around them. Professionals working with autistics must know about sensory variations.

There can be hyper-responsive (sensory seeking), hypo-responsive (avoiding), and rapid cycling between both variations. It’s critical to know that these exist, because otherwise, autistics might find themselves being led to a sensory room with blaring lava lamps and strobe lights in the name of accommodation, and find themselves triggered to the point of subclinical seizures. Yet again, some autistics will find such arrangements delightful, and it may be hard to wrestle them away from these stimuli.

It is imperative that designs should incorporate the actual need of autistics, and not per the idea of the funders of the project. When designs are ill-fitted to the need, we have industrial faux pas where toilet paper rolls are hung inside a shower door, or a 5-point harness is designed for a carseat by someone who has never had to put a child into a vehicle. These lived experiences are essential for avoiding awkward and injurious innovations that are counterintuitive and termed “design fails”.

 

When evaluating a sensory profile of an autistic person, check for the following:

  1. Look at their food choices. Do they prefer crispy-crunchy, or mushy-smooth? Do they prefer their foods to touch, or be strictly separated?
  2. Check their sleeping quarters. Do they like to have a popup tent, pillow fort, and weighted blankets? Do they sleep with their feet exposed, or undressed? Do they have trouble sleeping and toss/turn all night and wake up tired?
  3. Do they cover their ears to shield themselves from all sounds, some sounds, or human language sounds?
  4. Do they enjoy events in large venues, such as concerts? Do they take great effort to avoid gatherings of any kind?
  5. Can their eyes track on a screen when watching a movie or playing a video game? Are they using peripheral vision and muscle memory when writing, typing, or watching a ballgame?

The first is a sensory profile built on olfactory and tactile systems, since the mouth may feel assaulted by food stimuli which are not amenable to its schema. The second is an indication of arousal state, and how the individual prefers to wind down. The third is how the individual interacts with sound—less/silence is enough, or louder is heard better? The fourth is how the multisensory stimuli of sight and sound create a vortex around the person based on the acoustics of an outside space. Much like a room gets warmer when there are more people, the sound and lights will amplify in amplitude toward the autistic in the room. The fifth is how visual information is perceived with the least amount of fragmentation, as the central vision may take on too much information, or in bits, in conflict with a figure-ground extraction from a gestalt.

Once the sensory profile of the individual is identified, a sensory room can be planned to serve a particular set of needs. No single room should be organized to meet all types of sensory profiles, and rather, areas should be cordoned off for different needs. There may be a dark roo, with sound-reduction panels, and weighted items to use while adjusting the glow and color of the recessed lighting through remote control. There may be a lava lamp garden with customizable colors, since neon colors may cause a strobe effect on those who are sensitive to fluorescent rays. There might be a tactile room with nubby textured toys, stimmy balls, plastic grass mats, and rock or string collections. There should certainly be a room with acoustic music instruments, and an invitation to interact with others using this artistic medium. Start speaking to #actuallyautistic people, so your efforts don’t get lost in translation. All humans have a right to sensory safety and to prevent sensory violations.

 

“The Right to an Education”, Article Typed by Non-Verbal Autistic Piano Student with Dyspraxia

NICOLAS JONCOUR

NICOLAS JONCOUR

Article typed by Nicolas Joncour, Piano Student

[First appeared in ZOOM Autism Through Many Lenses magazine, Issue 9, p. 20]

A decent life in France is practically impossible for an autistic student, especially if you are nonverbal like me. In special schools there is no real education, and the psychiatric hospital remains the norm. As my mother encounters more and more difficulties to enroll me in a normal school, the only solution to an equal opportunity is maybe to leave France. I want to go to university to study the Holocaust as people with disabilities are still destined to horrific fates.

My hope is to study history and the Holocaust, a subject that has intrigued me for almost six years. Specifically, Operation T4, which is the eradication of the people with disabilities by the Nazis. Perhaps the Holocaust interests me because I feel the discrimination in relation to my disability. The eyes of others are like deportation camps without return for me.

Without my mother I would likely be in a psychiatric hospital. The right to education definitely remains the domain of utopia. The more I grow, the more I realize I do not have my place in society. I have to fight to deserve to dream. My disability, autism and dyspraxia, makes me look like a mentally-challenged person. People talk to me as if I am a small child, and they watch my gestures as if I am a monster.

The reality is that all their looks are like the slam of a cattle wagon door. My connections towards the victims of Operation T4 are very strong, and my reality joins their fatal destiny. I have faith that helps me, and God gives me so much love that I do not feel alone. I think I have the right to denounce my condition and my social discrimination as long as I would suffer of it. The right to a dignified life is my fight, and I recently joined the ENIL Youth Network to create change. Nonverbal autistic people demand recognition of their right to a real education.

My life would be rather simple if people would consider me as a person rather than a thing to eradicate. I want my intelligence to be recognized without having to meet the low expectations of people who doubt me. The peculiarity of my disability is that I understand very well what kind of people I have to deal with. The inability to defend myself makes me vulnerable to all attacks. Not being able to express oneself orally is a very hard way to live.

People do not consider my written prose without doubt. Not even my relatives who do not understand autism. To be recognized, mentalities must change, and the way we move, having no eye contact and no speech, shouldn’t exclude us from living a fulfilled life. For this to happen, we need the right to education, an education which mustn’t be negotiable and should be accessible to all.


Nicolas Joncour is a 16-year-old nonverbal autis­tic student who types. He lives in France and is homeschooled and in mainstream school for a few hours per week.

Follow him on Facebook and visit his blog.