I had often sat in that chair, yet I had never felt the bricks that make up our home with my fingertips. Neither had I ever pulled at the shiny strip that separates the babe’s carpeted bedroom from the floorboards of the hall. And it wasn’t until we shifted her to her own room recently, and I lay beside her on her low bed looking up at the distant ceiling and the small dangling light, that I empathised the high-ceilinged room may seem vast and intimidating. We both live here, but we take in different parts of the building. What does it mean to take this seriously?

 

I’ve been asked to write about autism and architecture. I’m an anthropologist and the daughter of owner-builders. I grew up on a construction site and, professionally, I have thought a great deal about the relationships between people and places. I can talk about design considerations with ease, but, although – or perhaps because – I’m a mother now, and my own mother works with children with diagnoses of autism, it is difficult to speak about autism. Autistic anthropologist Dawn Prince identifies that autism inspires fear because it ‘threatens order in both the academic sense and in the personal’.1 Indeed, finding a place to begin is like reaching out to touch bricks and mortar and feeling only the gaps.

 

 

2.

Let’s start then with building foundations, a language. What is autism?

 

The term was first used in 1911, by a Swiss psychiatrist in relation to schizophrenia.2 Since becoming the label for a ‘distinct childhood psychiatric syndrome’ in 1943,3 the concept of autism has been formally recognised as a medical condition, albeit one whose diagnostic criteria has changed radically over time, up to and including a changed definition of Autism Spectrum Disorder (ASD) in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders.4 It appears that ‘what we know and understand about autism is constantly in flux’, although the anthropologist Roy Grinker notes that ‘the constellation of behaviors and cognitive characteristics that we call ‘‘autism’’ today existed long before we made it an object of knowledge and narrative—before we interpreted it, named it, and started the ongoing process of reinterpretation and redefinition.’5

 

These two points highlight that, in speaking about autism, one is dealing both with a phenomenon and a cultural construct: it can be described narrowly, and generally negatively,6 as a ‘biomedical, neurological, or developmental or educational disorder’, and, more positively, ‘experientially as a way of being in the world’.7 The tension between, and within, these views generates both dilemmas and possibilities.

 

Though once a ‘rare psychogenic condition’, anthropologists Olga Solomon and Nancy Bagatell now speak of the ‘expanding boundaries of autism and its increasing prevalence’:8 in the US in 2009, diagnostic rates were at 1 in 110 children, and 1 in 70 boys.9 Three years later the same figure read 1 in 88 children and 1 in 54 boys.10 Although a scientific ‘deficit’ model of autism, based on concepts of normality and difference, separates humans into the autistic and the neurotypical,11 disability advocates who champion the positive aspects of a neurodiverse population emphasise ‘how big and diverse the disability is’;12 indeed, Solomon states that heterogeneity is the hallmark characteristic of autism.13 As Grinker explains,

 

Medicalized approaches to autism, at least as autism is now conceptualized as an expansive spectrum, also risk making a disease out of traits that are likely distributed in varying degrees among the general population, obscuring the positive characteristics of autism that contribute to human diversity and creativity.14

 

If the distinctiveness of autistic traits is culturally constituted, or even, in Prince’s view,15 an illusion, then society has the potential to un-disable those so labelled through better accommodating those traits.16

 

Yet, the increasing breadth of the autism ‘spectrum’, as a category suggesting inclusiveness, risks masking ‘the gritty truth about autism’:17 diluting the difficulty faced by some people with diagnoses and their families, and downplaying the urgency of their need for effective interventions and supports. In a survey of the UK autism community on the language surrounding ASD, Kenny et al. sought the views of those with autism, their family members and professionals in the field. As one autistic adult in their study explained, ‘well-meaning but unhelpful comments along the lines of “it’s a spectrum so we’re all on there somewhere” – trivialis[e] the very real problems it causes for those who are genuinely autistic’.18 Of such self-advocates, Grinker reflects that they are ‘often far more verbal, socially capable, independent, and empowered than others: autistic people who are non-verbal, self-injurious, have seizure and other comorbid disorders, and may require lifelong institutional care’.19 He concludes:

 

It is clear that even the concept of an autism spectrum cannot easily account for the wide range of suffering that exists. Nor can suffering be accounted for in a relativist frame only as the product of a society’s norms, or intolerance of neurodiversity.20

 

How then should we speak, usefully, truthfully and respectfully, about autism? Considering there are ‘reasonable and rational disagreements between members of the autism community as to which terms should be used’,21 one study recommended that those who work within the area ‘ensure that they have a clear understanding of the needs and preferences of individuals themselves and … learn how to listen effectively to autistic people and their families’.22 But should we use the term at all? Such words may in fact get in the way of seeing a person clearly, as another autistic participant in Kenny et al.’s study suggests: ‘functioning labels should be abandoned in favour of concrete descriptions of an individual’s specific access needs for particular accommodations’.23

 

 

3.

If dwellings embody our values24 then architecture, as cultural construction,25 has power to better accommodate a greater diversity of individual’s specific needs by dismantling and rebuilding ideas of normativity. The reality of difficulty experienced by some people with autism and their families, too, is something which can be compounded or alleviated by the built environment, and is an opportunity for design innovations.

 

The question of what these should be, in any given scenario, is not one with a simple or single answer. When it comes to building, architects find that ‘autism turns conventional knowledge on its head’,26 supposedly ‘a result of the non-standardized nature of challenges and, respectively, needs along the autistic spectrum.’27 Existing design guidelines can assist architects in knowing the kinds of questions to ask from the first meeting, and can give clients ideas as to what may be appropriate to their situation; however, these are only useful to the extent that they reflect the particular experiences of the building’s intended inhabitants.28 Further, members of families including a child with autism have different spatial needs. While ‘the entire family system could be positively affected if only one person in the family system becomes more comfortable’,29 if design intended to assist one member adversely impacts on others, the reverse could also be true.

 

Problematically, despite the existence of design recommendations, to date ‘there is a dearth of research related to space design for people with autism’.30 An analysis of written accounts by people with autism identifies four main experiential themes relevant to architecture: ‘a deeply sensory world’, ‘a mentally challenging world’, ‘independence and self-esteem’, and ‘safety and well-being’.31 Of these, the biggest focus of research to date has to do with building for the senses.

 

As illustrated by our porch foray, my daughter and I have, as do all humans, different ‘sensory profiles’:32 we lean towards some sensations of touch, smell, sound, vision, taste, movement and gravity, and away from others. But for us, so far, these innate preferences are manageable and catered to, whereas autistic people – as well as those affected by other conditions – have an altered sensitivity.33 This can manifest, not just as hyper-sensitivity, which may result in avoidance, and hypo-sensitivity, leading to sensory seeking, but also as internal interference: mixed signals.34 In addition, ‘an autistic child may also be unresponsive to sensations that their parents find unpleasant, such as extreme heat, cold, and pain.’35 Not only will every individual with autism have a different sensory profile, but their sensory experiences can change within a day, as well as in nature, frequency and severity over their life.36

 

When surroundings continually present a ‘lack or overload of sensory stimuli’,37 it can be difficult for a person with autism to simply ‘feel at ease in their own environment.’38 A sense of too much input can result in negative reactions to everyday household sounds, such as the sound of water running in the sink, and sights, such as a sunlit window.39 A sense of insufficient stimulation can manifest in a range of gross motor movements, such as rough interactions with objects in the environment, and intense inspection, through touching and/or looking at certain aspects of a space, such as surfaces and carpets.40

 

Putting sensory experience in the centre of an understanding of autism suggests that the key to designing for autism is better aligning the sensory environment with that experience.41 Architect and researcher Magda Mostafa contends that the disregulated behaviour common to autism can be favourably influenced by altering a person’s surrounds before, rather than after, such behaviour occurs.42 She explains:

 

If you think of the primary problem of autism being understanding, coping with and responding to the sensory environment, you can grasp the power of architecture in their everyday lives. The built environment provides the large majority of sensory input- light, acoustics, textures, colors, spatial configurations, ventilation etc. By manipulating the design of the environment we can manipulate that all-so-important sensory input.43

 

By freeing an autistic child’s sensory network of unnecessary traffic from their surrounds, Mostafa believes, a precious ‘window of opportunity’ is created for communication and the acquisition of skills.44 In order to determine how best to achieve this, she developed a design matrix which will generate different guidelines in response to the sensory profiles of intended users.45 The model is based on her finding that a person with autism identifies with the architectural environment not according to functional zoning, but rather, to sensory zoning.46 This means that, as opposed to spaces being organised according to activity (noisy cooking in a kitchen next to a quiet lounge, for example), they are grouped and ordered in relation to their level of sensory input (with quiet and calm spaces separated from others by transition zones). While design for autism is extremely challenged by building for a diversity of users, as in school design, Mostafa’s tool could usefully customise buildings with less users, such as private homes.47

 

When taking account of sensory experience in design for autism, though, it is important to consider not just what a space does to a person, but what a person can do in the space. For example, a large cylinder can invite circling around, crawling through, looking through, calling through, balancing on top or sliding off, activities providing a high level of sensory input, particularly proprioceptive and vestibular. Were the cylinder shiny or patterned outside, and lined with shag pile within, then visual and tactile aspects potential would also be increased. These possibilities may regulate a person with some hyposensitivities. Likewise, enclosing one end to create a cave or nest space may offer opportunity for sensory withdrawal, a place of respite for those with hypersensitivities. This is the concept of ‘affordances’: the possibilities for movement and interaction opened up by a building, or what spaces offer.48 If ‘structure determines what affordances exist’, it is the ‘affordances that indicate what behaviours are possible’,49 giving the designers of our built environments both power and responsibility.50 Paramita Atmodiwirjo explains that, ‘Within the context of the physical environment for autistic children, the presence of the environment needs to be considered as an affordance for actions and activities that could support the child’s sensory integration development’.51

 

 

4.

There remains a gap between these architectural insights into autism and the application and testing of them through design for specific autistic individuals, and, in the case of domestic spaces, their families. Those calling for more evidenced-based architecture when it comes to autism acknowledge that it is difficult to achieve, a result of the difficulty of controlling for variables, not to mention the added costs of experimental builds.52 Yet, as one expressed, since when it comes to autism ‘environmental factors lead to vastly different outcomes not knowing the effects of designed environments is not an option’.53 There is a clear need for more, and better, architectural research into which environments are most supportive for people with autism.54

 

This need coincides with the ‘reorientation’55 of architecture away from object, or product, and towards process.56 As opposed to being a ‘tool of exclusion’, architecture that focuses on process is about active engagement: ‘taking a lead yet at the same time relinquishing control … having an imaginative vision, but executing it in the name of others’.57 This kind of architecture requires closer attention to those who dwell58 inside buildings, as well as deeper consultation.59

 

Such a shift in emphasis necessitates new skills and collaborations – even more so in design for autism, where unique sensory needs, preferences, and family configurations must drive the process. This is where, I suggest, anthropology is relevant, as a profession that seeks to understand the experience of others from the inside.60 Methodologically, architecture and anthropology have different temporal orientations:

 

[A]rchitectural research is inclined to proceed by first intervening, and then observing what comes out of such intervention. Anthropologists, on the other hand, describe the world as it is first before attempting any kind of projection.61

 

Motivationally, however, there is growing acknowledgement amongst practitioners of the ways in which the two disciplines align. For example, anthropologist Marie Stender observes that:

 

The anthropological ambition of probing behind what people say in order to know more about what they do and why is related to the architects’ ambition of providing the building owner with what he needs and not what he says he needs.62

 

Anthropologists can be of use to architects in general, to help them gain knowledge of who they are actually building for.63 For families including those with autism, ethnographic methods of data collection, and anthropological analysis, can help reveal the ways in which they use, and could be better served by, the buildings they live in: taking account of the sensory environment, affordances, and the interplay of the spaces occupied by each member, and translating this information, between architect, client and vice-versa, in ways that can inform responsive design.

 

If, as Grinker suggests, the ‘explanatory models people develop for autism are engines for social action’,64 then our ability to build for autism is only as good as our understanding of it, not in general or in theory, but as it manifests for each individual, within their specific context. Which takes me back to the porch and the night.

 

Were my daughter to be diagnosed with autism tomorrow, or in years to come, I would want a house that she felt at home in. I would want someone to understand both her ‘way of being’ in the world, and the particular challenges we, together, consequently faced. I would want someone to think hard about the grooves between bricks.

 

 

About the Author: Carmen Cummings is an anthropologist with interests in psychological anthropology and the relationships between people, places and spaces. She has spent the last decade conducting native title research for Aboriginal groups in Western Australia. She holds a Bachelor of Arts (first class honours) degree in anthropology and a Graduate Certificate in Applied Anthropology from the University of Western Australia.