Sensory Issues and Social Inclusion

This is the full text of my chapter on sensory issues in public spaces, in the anthology “Knowing Why: Adult-Diagnosed Autistic People on Life and Autism”. The anthology presents contributions from a diverse group of people who were diagnosed autistic in adulthood. The book explores what it is like to feel so different, in so many ways, from other people without having known why; and then discovering that autism is not merely an explanation, but also an experience and identity shared by many others. Learning that your differences are autistic, even late in adulthood, is a positive event and useful knowledge for these writers.

You can purchase the book (and support the work of the Autistic Self Advocacy Network, ASAN) from Amazon, Barnes & Noble or Books-A-Million.

The book contents are: Emerging From Burnout – Erin Human; Being the Dictionary: On Passions, Diagnosis, and Integration – A.J. Odasso; Sensory Issues and Social Inclusion – Stuart Neilson; Working While Autistic – Kelly Bron Johnson; All of Me: How Do I Know Where Blackness Ends and Neurodivergence Begins? – Morénike Giwa-Onaiwu; Using Intersecting Identities and Radically Accepting Communities to Increase Coping Skills – Samantha Hack; Autistic Navigation of Chronic Illness, Mental Illness, and Healthcare – Amythest Schaber; The Spectrum and Depression: Four Stories – M. Kelter; Cyborgs, Luddites, and To-Do List Apps: An Autistic Use of Technology – A.C. Buchanan.

You can reference this chapter as: Stuart Neilson, “Sensory Issues and Social Inclusion” in Elizabeth Bartmess (Ed.) “Knowing Why: Adult-diagnosed Autistic People on Life and Autism”, pp.30-43. Washington DC: The Autistic Press.

Sensory Issues and Social Inclusion

Stuart Neilson

1. Late diagnosed Asperger syndrome in Ireland

I am a late arrival to autism, diagnosed seven years ago at the age of forty-five. I had a lengthy history of mental health issues up until then that, rather suddenly, were “better explained” by Asperger syndrome than any of the labels that psychiatry had failed to cure me of. It was a turning point in my life because I suddenly discovered a working set of explanations for almost all of the issues I’d struggled with throughout my life. Most of these had previously been identified within someone else’s authoritarian and “expert” framework: as educational failure, problem behaviour, mental illness or social dysfunction. I have had plenty of advice over many years on how I should buck up, pull myself together and just try to fit in. Equally suddenly after diagnosis, I now realised that many of the issues that affect me on a day-to-day basis and determine the quality and extent of my social life are fundamentally sensory differences. I feel that I have a limited supply of “Social Calories” that I can either use up gradually in extended, relaxed social activities or burn rapidly in high-pressure social settings, after which I need some alone time to recover. I consume Social Calories faster when sensory distractions and social interaction compete for my limited attention.

At school I was called a dunce (and made to stand in the corner at the front of the class wearing a conical hat with a “D” on it) and I was warned that I would be sent to a school for the educationally-subnormal (an ESN school, in the expert educational language of the 1970s, or more commonly “a school for dummies” among my classmates). I failed the 11-Plus, a kind of IQ selection test for ability-streamed secondary schools that some politicians are keen to bring back. Despite this, I also had flashes of genius, alternated between “A” grades and failures, and had the bitter-sweet nickname of “egg-head.” I don’t think that I will ever finish my education because I enjoy learning too much to stop and because I am an unemployed and relatively unemployable middle-aged autistic adult with a history of mental illness. My highest qualification is currently a doctorate in statistical modelling – so much for school experts and selective exams.

When we talk about the senses we usually talk about the obvious five external senses of sight, sound, touch, smell and taste that we use to perceive the environment. We also have a less discussed range of internal senses for perceiving our own balance; the position of our body parts; and our heartbeat, temperature, and digestive states. Some of these internal states are strongly related to states of emotional arousal. My own senses are heightened with respect to certain kinds of distracting noise, visual movement, and unexpected skin contact. I have an extreme dislike of some textures that verges on phobia. I am not particularly sensitive to my balance, body position, temperature, or bladder and bowel fullness. This individual profile differs from other people diagnosed with the same label, but I have found a comforting sense of community in knowing that other people with my label also have heightened and diminished sensory perceptions as compared with the neurotypical majority.

Interestingly, my sensory issues are more difficult in social contexts. I love listening to a tree full of rowdy crows cawing, flapping, and diving between branches. A barn full of cows and steaming dung brings me a warm sense of calm, no matter how noisy the cattle. Even the synthetic cacophony of machinery is sometimes a delight – I could easily spend hours watching Industrial Revolution exhibitions of belt-driven weaving machines tracing the same mesmerising patterns over and over, until my family eventually drags me away. My musical tastes are very diverse when I am alone, but I might find the same music intolerable in a crowd. Being at one with and engaged in the sensory world, rather than having the burden of sensory distractions on top of social demands, seems to be a key factor in whether sensory experiences are positive or negative.

The analogy of Social Calories has helped me understand that there are situations, always with a social component, that I find very draining. I often feel the need to sleep through the day after a party, lecture, or social gathering. Many other people seem to thrive on social interaction and to build up their positive energies in the exact settings that sap mine. Being able to identify the impact of different kinds of social interaction on my energy allows me to choose how and when to engage, and when I need to take time out to recharge. I believe that we are all social animals and I do desperately crave social connection, but I am not well-equipped to find social connections that are fulfilling without exhaustion. Breezy gossip, polite small-talk, social competition, workplace joshing, and second-guessing other people’s unspoken sub-texts are all particularly hard. It is a search for settings where, to parallel the DSM-5’s description of autism, “social demands do not exceed limited capacities” [ii] – settings where the rewards of contact with other people exceed the energy (and sometimes the pain) of engaging with them.

With the benefit of four decades of hindsight I can easily identify how sensory issues helped to create the genius-dummy schoolchild with my (then) unpredictable mixture of social withdrawal and extreme chattering. I am shocked that modern schools, with far more hindsight at their disposal, still fail to recognise the role of sensory differences even now. I never got the hang of any physical sports, especially team sports, and my fear of being touched affects me in almost any public place to this day. I usually overdress in both summer and winter to keep my skin protected from unexpected light brushes and I am very picky about fabrics and hygiene products touching my skin, though I recently discovered a range of soft T-shirts that vastly expand the range of clothing I can wear without being distracted by the textures. Security staff have been called to help control my outbursts when doctors and others have touched me in unexpected ways (a hint: just say what you are going to touch, in simple words, before you touch it).

2. My knowledge and lack of understanding

I used to believe that I had a reasonable knowledge of what autism is, but after diagnosis, realised that knowledge and understanding are very different things. I had known a number of autistic adults when I was in school, at a time when autism was rarely diagnosed and the label “Asperger syndrome” did not exist. I also have a number of younger relatives whose autism was recognised while they were in school. These two groups of people are very diverse, they are not obviously like each other and they don’t share any obvious characteristics with me. I had also, like everyone else, seen various Hollywood interpretations of autism in the form of films such as Rain Man and Mercury Rising – which again are very diverse and share little obvious in common with the autistic adults I knew, or with younger autistic people, or with me. I did have one fleeting sense of self-recognition with a character in an episode of the Australian hospital drama All Saints, who is told that his patterns of rigid thinking and inflexible routine place him “on the same spectrum” as his autistic son. There is really no other screen portrayal of autism that I strongly identify with, but there are a number of characters in fictional books, where I suppose some degree of imagination helps me see myself in their portrayal.

In short, I was unable to locate cohesive and consistent features connecting these very different real and fictional characters. I was unable to recognize any shared common elements of their characters, behaviours and lives that could bind them together under the single umbrella of autism. It was only much later, well after my own diagnosis and self-research that I have been able to see the threads that connect very different expressions of shared autistic features. Context, the quality and availability of social relationships, verbal expression, and so many other individual and environmental factors lead to very different expressions of underlying autistic traits, such as those related to social interaction and communication and so-called “restrictive and repetitive behaviours.” With fictional characters, authorial and editorial decisions can result in inaccurate or obscured portrayals of autistic traits – fiction and film are intended to entertain a primarily neurotypical audience, and not to educate.

Bullying and a sense of social isolation have been difficulties throughout my life, especially during school. These two problems became especially severe in a new job after moving to Ireland, where I experienced a level of workplace bullying and harassment that lead to clinical depression and anxiety. I ended up in the public mental health system and went through a number of diagnostic labels and a long series of different prescription drugs, at one point being labelled with “treatment resistant” symptoms. One psychologist eventually recognised that some of the “symptoms,” such as my limited outward expression of emotional reactions and distractable attention, were innate characteristics and not something that could (or should) be cured.

I was extremely lucky in being in the public health system, where a multidisciplinary assessment and diagnosis were accessible, and lucky to be under the care of the psychologist who proposed the assessment. Adults over eighteen years of age in Ireland do not have easy access to assessment and some people even have difficulty in obtaining a referral to a psychologist or psychiatrist. Private assessment is expensive and some people offering private assessment are not qualified, so their diagnostic reports are not always accepted when accessing services. My psychologist did not impose the assessment and outcome on me, but instead asked me if I knew anything about the autism spectrum (which of course I claimed to know plenty about) and then suggested that I go home, read up some more about adult autism, discuss it with my family and then tell him at the next appointment whether I would like to pursue an assessment and possible diagnosis. I was extremely surprised that anyone would suggest autism (which I knew about) was relevant to my difficulties, although my family were not in the least surprised.

3. My light-bulb moments

Some autistic people may reject a professional evaluation and diagnosis as personally meaningful because they don’t feel a formal affirmation would further their understanding of autism or its relation to themselves, but in my own case (where I had never even considered a connection) it has been a vital self-awakening. The formal diagnosis has also been a key, rightly or wrongly, to services that are only available to adults who have been formally diagnosed by a registered psychologist or psychiatrist. For me, diagnosis was my “light bulb moment” in which many difficult or puzzling aspects of my life suddenly made sense.

I have often felt a sense of guilt over clumsy and uncomfortable social interactions, where I come away with a sense of having failed. Over a lifetime, I have internalised a deep sense of shame in social settings. Sometimes I find that although I have heard people clearly, I can’t immediately understand the meaning of the sounds they made, and have no way to respond to them. Afterwards I am able to recall the sounds, as if playing the whole interaction back again, and kick myself for having missed even simple conversations. In reality I have been feeling anxiety and discomfort that other people probably did not notice or paid little attention to, and I have internalised my discomfort and feelings of stupidity as shame. In that sense autism is a “Not Guilty verdict” for a lifelong feeling of social isolation.

Most importantly for me, the sensory issues of autism explain a great deal of my difficulty in navigating shared public places and social groups, and even explain some food intolerances. I find social interaction much harder in large, busy places, becoming irritable and uncommunicative even with my immediate family. The same factors become more bearable in a computer superstore or museum that interests me. Noisy social gatherings make me nervous, especially with strangers or in strange places, but are more bearable if the event is something with formal structure such as a religious occasion. One lifelong mystery had been illness after eating baklava, but not after eating kataifi, even though both are pastry sweets made from the same basic ingredients; baklava is served at weddings and other events with high sensory and social demands, but kataifi is eaten at home. I also have a strange fondness for styles of beat-driven music that I use when working, but would never listen to for pleasure. These paradoxes begin to make sense when taking into account how autistic sensory sensitivities can differ by context.

The words “autism” and “Asperger syndrome” open up access to a vast array of books and internet pages (some of which are extremely misleading and occasionally harmful) and to both virtual and real life communities of autistic people. I have seen dispute within the these communities, which is especially bitter between autism organisations and groups, as well as long-running arguments over the “correct” labels for autistic people. I tend to agree with Judy Rapoport’s statement “I am incredibly disciplined in the diagnostic classifications in my research, but in my private practice, I’ll call a kid a zebra if it will get him the educational services I think he needs.” [iii] Precision is helpful from a scientific and statistical perspective, but real life requires elasticity. I reject blatantly false labels (“sufferer” is one of the worst), but have a relaxed attitude to other labels, so long as they are technically accurate and used with good intent.

4. Public spaces and sensory issues

There is a retail phenomenon called (in a tragic irony) the Gruen Effect in which sensory disorientation and sensory confusion can be deliberately engineered in a shopping mall to create uncertainty and anxiety in shoppers. The response of most people is to resolve their anxiety by transferring all their uncertainties into shopping, with an easy resolution (literally) staring them in the face. It is a tragic irony because the Austrian architect victor Gruen, who designed the first indoor, air-conditioned shopping mall at Southdale, Minnesota, in 1956, was a fierce critic of the “bastard developments” [iv] that became a total opposite to his original intentions. Gruen wanted to integrate safe retail, work, and suburban environments, to prioritize pedestrian traffic, to reduce commuting time, and to foster a real sense of community. For people who don’t receive a sense of certainty and fulfilment from impulse shopping, the modern shopping mall is an experience of extreme discomfort that only obstructs carefully planned purchases.

Public spaces like shopping malls, offices and airports make me far more nervous than most people. I am aware now (since diagnosis) that my discomfort is not all caused by people staring at me, or being angry with me, or thinking about me in unkind words like “weirdo” that have been so familiar since childhood. A large part of my discomfort is caused by sensory overload and sensory distraction that has been deliberately designed into many public spaces. Simply being aware of the source of that lifelong discomfort is enough to be able to participate in a wider range of everyday activities than I have in the past.

It is really important to note that public spaces like these are the result of a design choice to create uncomfortable environments, and not a necessity. That choice may be because my sensory comfort is expensive to accommodate, or because most people actually like the disorienting public environments we have available, or at least spend more time and money on them.

I do occasionally attract the attention of suspicious security staff who notice me because I am not behaving in the way they expect of a typical shopper, office worker or passenger. Air travel has become a special circle of hell with the modern theatre of security, which is designed to comfort travellers through the illusion of greater safety. Airline organisations have developed formal systems to pick out weird behaviour (like mine) along with genuine security threats. The most publicly exposed system is the leaked TSA “Screening of Passengers by Observation Techniques” (SPOT) Referral Report [v], although air travel worldwide presumably operates similar behavioural screening programmes. The SPOT screening test counts up the number of suspicious behaviours such as avoiding eye contact, fidgeting, hand-wringing, a cold stare, appearing to be confused, or not responding to verbal requests. If passengers score four or more points-worth of suspicious behaviours then they are selected for additional scrutiny or a law enforcement officer is called over to assess them for potential threat. The behavioural screening checklist reads very much like a diagnostic test for differences in sensory perception. Needless to say, I (and one of my children, who is autistic) are more often picked out for a rigorous search and extra interview questions than either other people we travel with or other passengers.

When I travel I now carry a photo ID card that identifies my diagnosis, along with a first-responder information leaflet with a brief guide to autism and Asperger syndrome. I have never presented the ID card, but it is a comfort to know I do have it if I ever need to explain my behaviour – it amazes me how language evaporates into incoherence or silence when I am anxious. I once spent an hour undergoing an enhanced security inspection at Bristol airport, with body searches and inspectors opening the seams in my baggage, which might have been quicker if I had been able to retain my usual verbal fluency and answer the security questions more fully.

5. Managing my sensory sensitivities

I have not found it easy or comfortable to start thinking of myself as “a disabled person,” but I am very conscious of having to contend with many disabling environments. There are disabling places in which my capacity to function is reduced by the architectural design or the sensory ambience. I am comfortable in identifying my own impairments (in medical language) and the processes by which they interact with certain environments to disable me. This is consistent with the Social Model of Disability, which contends that disability is not innate and is not the inevitable consequence of impairment.

Disablement is the systematic oppression and exclusion of people with impaired functions from mainstream society, through social and economic processes as well as through the infrastructure and architecture we are forced to navigate if we wish to be full participants in society. “Impaired function” is not always a limitation in itself, but becomes limiting when it conflicts with a world designed for “normal” levels of function. Shopping malls, airports, and inconsiderate working environments are all examples of the social and economic choices by which society excludes autistic people from full participation.

It is easy to avoid sensory distress by not going out, but avoiding sensory distress comes with an opportunity penalty, including fewer friendship, educational, and job opportunities. There are ways to be less uncomfortable in a world structured by and for people who do not experience distress at continuous, varying noise and light. Most people seem to be positively energized by sensory loads and seem to equate the “buzz” of a noisy shopping mall or café with their image of personal economic and social success.

My hearing is probably my most impaired (or least conforming) sense, and I find many noises intrusive, distracting or painful. Noises that have a high energy output in a narrow frequency range (such as sirens, beeping cash tills, or piped music) are the worst. I find that a thick, woolly hat comfortably muffles noise and I am lucky to live in a climate that excuses wearing a hat almost all year round. At home I use noise-cancelling headphones to electronically reduce external noise, as well as noise-isolating earbuds to exclude external noise. These devices reduce external noise rather than masking it with music, which can harm hearing when used to simply raise the overall sound level. I have never been comfortable in public wearing headphones because I am too old to be cool, but I have mapped out a collection of quiet, dim safety corners in shops where I can take a time-out if I get stressed or anxious while shopping. The technical, bookkeeping, and computer science sections of bookshops are a frequent oasis of calm.

Flashing lights and cheaply-made LED lighting systems (which visibly flicker, especially in peripheral vision) are an annoyance, but become a more serious problem when combined with noise. Christmas is a particularly hard time because not only shops but the entire street-scape fill with synchronised musical light displays, leaving very little opportunity to escape. It is not necessary to rebrand everyday provisions in festive pictures and sleigh bells, but somebody in the marketing department must find it desirable. Shopping earlier in the day and away from busy centres is usually quieter. Shopping for clothes is always hard (a one-size-fits-all uniform in one colour would suit me just fine, eliminating all that anxiety-inducing choice) but clothes shops tend to be calmer on the days when big sporting events have kept all the other potential shoppers away watching the game.

I often say (usually in inappropriate settings) that there are only two common activities that simultaneously engage all five external senses: food and sex. Some less common activities such as painting, pottery or gardening can evoke strong flavours if you happen to lick a stained finger or use your lips to bring the tip of a paintbrush to a point. Any of these might be either pleasant or horrible, depending on the activity, the context, and whether the contact was intentional or expected. Just having advance warning of a sensory experience can be enough to convert an unpleasant sensation into a bearable or pleasurable event. Some public spaces do manage to engage the senses of taste and odour either deliberately with perfumes (think of candle shops) or inadvertently with airborne dust. Building works often release dust that has a strong flavour and odour. Coffee-grinders and similar machines also release flavour into the air.

GPS and hand-held mapping have transformed the way I feel about travel and my rigid belief that there is only one right way and every other turn is the wrong way. I have never learnt to drive, but the calm voice of the GPS soothes me because it is always capable of recalculating a new route and showing how every point on Earth is connected to the destination, no matter which turns the driver takes. I am now a much less anxious bad passenger. We use a “Smartie trail” process to mark out key points in holidays and journeys – the timing is not critical, so long as the next Smartie (a meal break, a museum or a hotel) is foreseeable. Our family also structures the anxiety-provoking unknowns of a strange place into a set of building blocks by highlighting the enjoyable things to see or do in a tourist information brochure, or collecting a list of things we might do from internet searches, without necessarily timetabling each and every hour. We know each of the building blocks, and don’t need to know their order or what the final building will look like. It is easy to find internet images of most places, or even to rehearse an entire journey in a street view before visiting. Anticipating a collection of future experiences is much more pleasant than fearing unstructured days in a strange place.

There have been some wonderful developments in “autism-friendly” and “sensory aware” public initiatives in recent years. These include autism awareness training amongst airport and airline staff; autism-friendly sessions in many museums, cinemas, and theatres; and autism-friendly shopping hours in supermarkets. At their best, these initiatives take place in normal business hours and require no passport to entry, meaning that nobody polices or questions any diagnosis or other reason for using the facility, which is simply available to all potential customers. The most effective of these initiatives are directed by people who are intimately familiar with the experience of autism. Two that are worth a special mention are the Royal Collection Trust, which has fabulously detailed guides on the sensory and anxiety experiences of visiting the royal palaces in London, and the availability of autism-friendly shopping in Supervalu Supermarkets in Ireland, with reduced visual and auditory distractions in a weekly time slot. The best initiatives are motivated by or consistent with the Social Model of Disability, clearly locating the problem of disablement within the environment and not within the person.

The focus of autism has always been on children and the undoubted importance of early intervention, but the most important message I have learned is that people are always capable of learning, at any age. There is no age point after which intervention is worthless or support is no longer valuable. I have learned a great deal in the way of useful strategies to participate in society and I have unlearned some limiting sensory avoidance techniques that avoided positive engagement with other people. There is a great deal that can be achieved by the three quarters of autistic people who are adults.

About The Author

Stuart Neilson lectures and writes about the autism spectrum as a health statistician and from his personal perspective of an Asperger syndrome diagnosis in 2009, at the age of forty-five. He was a founder member of the team that developed the innovative Diploma in Autism Studies at University College Cork, Ireland. He has a degree in computer science and a doctorate in mathematical modeling of inherent susceptibility to fatal disease. Stuart Neilson’s most recent books include Living with Asperger syndrome and Autism in Ireland, Painted Lorries of Pakistan, and MND Essentials: Your Fifty Key Questions Answered.

Notes

ii – “Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).” American Psychiatric Association, “Neurodevelopmental disorders”, in Diagnostic and statistical manual of mental disorders, 5th ed (Arlington, vA: American Psychiatric Association Publishing, 2013), doi:10.1176/appi.books.9780890425596.dsm01.

iii – Judy Rapoport, quoted in Arthur Allen, “The Autism Numbers”, Slate, January 15 2007, http://www.slate.com/articles/health_and_science/medical_examiner/2007/01/the_autism_numbers.html

iv – Victor Gruen quoted in Anne Quito, “The father of the American shopping mall hated what he created,” Quartz, July 17, 2015, https://qz.com/454214/the-father-of-the-american-shopping-mall-hated-cars-and-suburban-sprawl/

v – Jana Winter and Cora Currier, “Exclusive: TSA’s Secret Behavior Checklist to Spot Terrorists,” The Intercept, March 27, 2015, https://theintercept.com/2015/03/27/revealed-tsas-closely-held-behavior-checklist-spot-terrorists/