Autism-Friendly Design: A View on its Present and Future State
Contribution by Flip Schrameijer to the conference-book ‘Autism-friendly design’, held October 9th 2015 in London
In her excellent 2011 review of the state of autism-friendly design, Maria Assirelli took her own involvement in it as point of departure; and with good reason since she recounted how, in 2005, she took a job at GA Architects, a firm in the vanguard of building for children on the spectrum. Founding partner of the firm, Christopher Beaver wrote the first of a limited number of ground-breaking articles on this subject in 2003 which he elaborated in 2006.
My own involvement started in 2009 when the Dutch autism centre Dr. Leo Kannerhuis asked me to write a brochure to exhibit the expertise in design it had acquired through its participation in the building of numerous treatment and long-stay homes for autistic patients and residents in The Netherlands. This centre – lets call it The Kannerhouse – treats patients and develops innovative programs such as around work and education. Its main policy is ‘life coaching’, in which people on the spectrum are provided with sufficient professional support to live (semi-)independent and fulfilling lives. Of course, if homes adapted to the needs of people on the spectrum were available, their chances to stay away from, or limit their institutionalization would increase. Consequently, the Kannerhouse sought to increase its consultancy requests in order to set up a regular paid service on a budget-neutral basis. For this it had to widen the circle of interested parties which was an important reason to expand its areas of interest beyond treatment and long-stay homes to include independent living, schools, and living at home. (The workplace was deemed one bridge too far.)
The Kannerhouse-people gave me all the tips and tricks they had learned over the years; the briefs on several new buildings, the meeting reports between staff and architects, the literature they had consulted as well as the interviews conducted with residents, architects and experts on various subjects such as colours, windows, scale and ‘noise-spaces’.
I must admit I was not thrilled by this assignment. I did it because a previous attempt to work with an outside writer had failed and after writing three other books for them in the previous six years I felt I ought to help them out.
I believed it to be a limited, somewhat boring subject without much intellectual challenge, other than creating order in what seemed to be a random pile of design adaptations.
I soon discovered how completely wrong that assessment was. What I now call the ‘core literature’ (Beaver, 2003 and 2006, Whitehurst, Mostafa, Humphreys, Scott, Khare & Mullick)
1 caused an epiphany: a new movement was under way, founded on the realization that the focus to date on adapting the environment had almost exclusively been on the social environment. (That is trainings and autism education to relatives, teachers, job coaches and the like on how to accommodate ones’ behaviour to that of people with ASD.) Attention to the physical environment, however, seemed to have been forgotten, even though sensory and other autistic handicaps had been – as it were – crying for attention all along. As I learned more I saw how the quality of life of the quarter million people in The Netherlands and many millions with autism worldwide, could be tremendously improved, sometimes by simple and even costless changes in their physical environment.
Living space after leaving home
In The Netherlands 95% of youngsters on the spectrum between ages 17 and 23 live with their parents while 30% are older. I don’t know about the UK, but in the US alone half a million teenagers with ASD will come of age in the next decade and many parents are sick with worry about what will happen after they can’t care for them anymore. Contributing to anything that can help to ameliorate this situation even a little bit is immensely gratifying.
An autism coach and co-reader of the brochure manuscript told me of a young man who had failed dramatically several times to live independently. She decided to try the easier and less expensive recommendations and writes:
“Now he’s located in a little house between the meadows, wholly adapted: quiet colours which match his view on all that green, very dark floor and furniture, signs and picto’s all around, light switches and door posts in contrasting colours for his orientation. Sturdy chairs on which one can sit tightly, an ‘embracing’ armchair, etc. Very spacious walking space without touching.
He started December 4th. All of us were prepared for another psychosis because of such a big change (location and coaching). And really, incredible, what a difference! Not yet a month later he goes happily to his day care, sleeping late, being super communicative, starting spontaneously to carry out bits of self-care and he even finds room for taking new initiatives and learning new things. If that isn’t proof these tips are golden…”
The other day I had a conversation with a man in his twenties who had been diagnosed with Asperger’s only last month. He has a responsible job and is very anxious – to the point of exhaustion – that his employer will learn about his condition.
Wanting to know more about his experience with the built environment, I introduced this subject by mentioning schools: the significance of seating arrangements, way-finding, the fear of the playground, the rubbing of bodies on stairs and in hallways, the bullying and the necessity to have clear sightlines enabling adult supervision. And – most of all – the sensory purgatory schools, with very few exceptions, are. Noise exceeds standard sound-limits in around 90% of schools, and certainly not by little. Exceeding the CO2-levels is just as common and signifies a shortage of oxygen, leading to infectious health hazards along with obnoxious smells. Temperatures hardly better.
I added: “These circumstances are hard to bear for NT-kids, let alone for those on the spectrum.”
He nodded and said: “I only finished high school because of my intelligence. I found the place unbearable, couldn’t cope with it. I was home two thirds of the time, so it’s a miracle I graduated. There were three of us. Different I knew then, with Asperger’s or autism I know now. I was the only one who graduated; one dropped out and the third one killed himself because of this.”
“Do you mean, the physical circumstances or the other students?”
“All of it,” he said.
So ‘improving the quality of life’ is an understatement. Autism-friendly design not only helps in achieving an education, a job and other forms of social participation but can save lives within a group that commits suicide at roughly four times the rate of those not on the spectrum.
Unlimited sources of insight
My initial assessment this subject was limited to practical preoccupations with doors, floors, windows and hallways, was equally misguided. My education as a sociologist and social psychologist had consistently pointed me away from the world of things toward the social world of class, power, values, attitudes and ideology – abstract concepts through which the true nature of the world around us could be understood. (Perhaps this same prejudice is responsible for the fact it took psychiatrists and psychologists concerned with autism so long to see the relevance of the physical world which for those on the spectrum is even more inescapable than for most.)
Now I learned that the true nature of the physical world too is quite something else than we naively assume it to be. Colours, for instance, are almost literally in the eye of the beholder and have no objective reality; they only come into being after mixing the proper stimuli in our brains, creating quite different results in different species and quite possibly in those on the spectrum and NT’s as well.
Studying the – to me quite fundamental – subject of central coherence, I became acquainted with brain processes by which observed bits and pieces of reality are constantly assessed against generalized notions already residing in our brain, thus constructing reality. Buildings, man-made constructions, exploit this mental capacity so we know our way in them, but autistic people don’t generalize as easily and sometimes not at all. Often, they literally get lost in the details.
The Kannerhouse-people told me about a young man who never learned where his classroom was; he had to ask the concierge every single day he came to school.
Focussed on autistic difficulties with orientation in space, I noticed the 2014 Nobel Prize in Physiology or Medicine was awarded to the discovery of a third kind of cells, located in the amygdala which contributes to the GPS we all carry around. The amazing ‘place cells’ which are filled with information about every place we visit, were already known and so were brain cells which light up like the points of a compass, depending on the position of our head. The newly discovered cells are ‘grid cells’, much like the squares on graph paper, which interact with both other cells and provide a kind of map enabling us to navigate space and avoid obstacles even in darkness. How fascinating is that? And what does this tell us about disorientation of people on the spectrum? Is their GPS perhaps impaired by connectivity problems or other dysfunctional brain processes? Neuroscience has no answer yet, but probably will in the future. In other words, here the study of mechanisms which can aide autism-friendly design meets a boundary. Saying that, of course by no means justifies my initial verdict of design for autism as a boringly limited subject.
Neuroscience is not the only source of insight for understanding autistic difficulties with the built environment. Concepts from environmental psychology which shed light on the experiences of neurotypicals – and potentially also on autistic experiences – can help in the creation of better adaptations as well. How can concepts such as territoriality, crowding, social space, thermal space, tactile space clarify the autistic experience of space? As far as I know, only personal distance has made it into the autism design literature, through Humphreys as ‘proxemics’.
Evolutionary psychology may be a source of insight too. My guess is people on the spectrum have the least trouble with aspects of the environment which are most tied to survival. The earlier on the evolutionary time-line the building blocks for experience with the material world are formed, the smaller the problems with them. These problems become larger to the degree that the environment is man-made, acquiring symbolic meanings which are well-known autistic stumbling blocks. No wonder the experience of nature and the interaction with animals is generally considered beneficial to autistic people.
Once we start looking into the mechanisms behind the problems people on the spectrum have with the built environment one encounters an exciting and unlimited world of actual and potential knowledge. This reminds me of the parable of Buddha who as a little boy came running home crying; his mother looked into his mouth and saw the universe.
Controversy and paradoxes
The third misjudgment I made about the paucity of intellectual challenge in this new design field proved laughable. I don’t know of any field more riddled with contradictions and paradoxes and which demands as much analytical powers as are necessary to impose even the most basic order on a wide variety of adaptations.
Quite a few what are called ‘design considerations’ or ‘design guidelines’ – I prefer dealing with their building blocks which I call ‘recommendations’ – are seen as controversial while they involve paradoxes rather than contradictions. The most general one is: do people on the spectrum really need autism-friendly design or are they better off when exposed to the real world in which we all want them to participate? The answer is: it depends. Mainly on two things: the severity of the autism and related executive and other cognitive characteristics on one hand and the future prospects of the individual on the other. A small minority will always need some kind of institutional care, so for them it makes no sense exposing them to subjectively unbearable physical conditions. Others have a clear prospect of living (semi-)independently without the need for many special adaptations, beyond those in the realm of personal taste (e.g. in colours, lighting, noise and clutter in the home). There is a substantial group in the middle which isn’t ready for life in the community yet, but probably will be after trainings in interaction, work, housekeeping, the preparation of food, etc. Generalization problems, which most have, dictate such trainings should be carried out in realistic settings, so would point in the direction of no adaptations. However, for many autistic people this is a bridge too far because their sensory and other limitations make it impossible to learn anything without such adaptations.
Some need a school or a treatment home in a quiet area while others would benefit from exposure to city life. Learning to prepare food, for instance, might start in a kitchen designed with all sorts of autistic limitations in mind, while later, living (semi-)independently, some or most of these measures can be relaxed.
Similarly there is no right answer to the question of whether low-stimulus environments are always required. Actually more children, in particular between ages 6 and 9, suffer from under-, rather than from over-responsivity and so would require high-stimulus environments. But here’s a catch, in fact two. The different senses of one individual can have both high and low thresholds. Secondly, one can’t meet all individual preferences in a group such as one finds in treatment facilities and schools. For both reasons the low-stimulus option is usually most appropriate and will often have to be supplemented by special spaces where the volume, so to speak, can be turned up.
There are a few more of such paradoxes, such as the size of spaces: large for clarity, orientation and not bumping into something or someone, small for feeling safe and for stimulus-reduction. This too depends; on the individual and his mood.
There are real controversies as well. One is about colour. There is agreement that people with ASD are often extremely sensitive to colour and also that many of them have great difficulty with extreme colours, such as very bright, glaring and/or contrasting colours. The controversy is whether colours themselves (their hue), have intrinsic qualities such as disturbing, calming, or neither. Whitehurst says they do – pink and purple are calming, grey is neutral – while the Kannerhouse expert says they don’t; and both refer to science. According to the latter colours themselves have different effects on different people. This is the core of the controversy, because both may agree that combinations of colours, their reflection and their degree of saturation make big differences. (See the theme color on this site.)
Whether or not all focus should be on sensory problems in adapting the environment is another real controversy. Mostafa seems to believe so since she has tried to fit all her ‘design guidelines’ into a so-called ‘sensory design matrix’ of which one dimension represents five senses. In practice, however even Mostafa both implicitly and explicitly brings other autism characteristics into play. So, for instance, an important adaptation, called ‘spatial sequencing’,
2 is directed at limiting distraction by other kids which is surely not purely a sensory, but also a social and a communication matter.
Khare & Mullick also propose a sort of matrix wherein they fit all their 43 ‘design considerations’, of which only 8 address sensory problems. The other 35 are centered around the three diagnostic core-criteria (interaction, communication, stereotyped patterns of behaviour).
Remarkably so obvious a controversy has not led to heated discussions among the ‘core-authors’. Only a handful of others seem to have noticed this.
Searching for order
When I mentioned the daunting intellectual task of creating order in a wide variety of adaptations, ‘wide variety’ was an understatement. How about the considerations around the location of a school or treatment home, compared to those about the preferred surface of a kitchen counter top, the purchase of a coffee grinder, the choice between cooking on gas and electrical, the layout of a playground, avoiding gravel paths, avoiding timers for outside lighting and shadows in the living room, not making a child share a room with a sibling, not having a pendant over the dinner table or venetian blinds or opposing doors, nor closers?
Some recommendations, are about direct interventions in the built environment such as ventilation or sound-proofing. Others are indirect such as creating sightlines for nurses and teachers so they can oversee communal living spaces and playgrounds for observation and to avert bullying. Some are straightforward such as separating the toilet from the bathroom, others rather are a principle with various applications such as ‘zoning’ which may be achieved through interior design in a classroom or on the scale of an entire school or long-stay facility in its construction phase.
I suppose I’m not the only one who desires this new field to have a structured and integrated ‘body of knowledge’ on which to base architectural and design adaptations. One wishes bits of theory about the workings of autistic minds to have some cohesion and logical order. All the common ground I could find, however, were shared design goals, by taking the 18 developed by Khare & Mullick and looking for agreement with the other core-publications. It appeared that at least five out of six agreed with 15 of Khare & Mullicks’ design goals. (See here.) However, in the ways these authors propose to achieve these goals, I found no such common ground and therefore little to order.
After having written a handbook of more than 250 pages which in the end I cut down to the originally requested 100 page brochure, the Kannerhouse gave me permission to use it all on a website of my own. Having given up attempts to invent an overarching, logical scheme, I still needed a practical structure for my material. Instead of a philosophical approach by which one defines abstract categories which are subsequently filled with content, I did the opposite and took an inductive, bottom-up approach. I took the manuscript and marked all architectural or design measures in one colour, the accompanying considerations in another, the aim of the measure in yet another and the targeted autistic characteristics in yet another. Subsequently, I deleted all unmarked text, and was left with 157 measures. I wrote each one on a card of a dismantled Rolodex and spread those over the dinner table and the piano, trying to figure out the most sensible categories. I hovered around them for two weeks, while keeping my family-members out of the room. The results can be seen here.
Meanwhile the Kannerhouse had changed its priorities. Under pressure of cut-backs in health spending it abandoned its consultancy plans. Apart from funding, one could witness a general decline in the interest in this subject, since the rising tide of ground-breaking publications suddenly dried up after 2009. It looked a lot as if autism-friendly design had been a fad which had run its course and now was over.
Present and future of autism-friendly design
Last year I had a revealing conversation with a partner/architect at Mecanoo Architects, a prestigious Dutch firm which designed a new second grade school, replacing an old one for autistic students which is presently being built in The Hague. He showed me the plans and explained the details. It was impeccable. With some effort I could find one small missed opportunity which I can’t remember now and which was greatly offset by several solutions (such as different stairs for up and down traffic) that were new to me. I asked him where his expertise came from. He said he had visited the old school and talked extensively with the principal. He’d picked a small team of his people who had affinity with the subject. He himself was the son of a special education teacher and knew such buildings intimately from childhood. And of course his team had searched the Internet – and might have spent a minute or two on my site, if at all. I don’t have any illusions my site will eventually capture the ‘body of knowledge’ of autism-friendly design, because such a thing does not exist other than as a cloud with unclear boundaries.
The way Mecanoo works is exemplary for the present state and, I believe, for the less than distant future of autism-friendly design as well. The knowledge which can inform the creation of autism-friendly spaces is in principle limitless and can be found everywhere by architects and designers who are the translators of this knowledge into buildings, interiors and the surrounding areas. To them the abrupt halt in ground-breaking publications didn’t matter, since they built more than ever. Indeed, why would they engage in debates about controversies or worry about contradictions if they can just pick and choose what they think will work for them? Their contribution will be buildings, not theorizing about them – barred the few exceptions who pushed this field into existence. It will be up to other entities such as universities to set up research in order to gradually determine which measures are more effective than others, which is a dire necessity if one wants to progress beyond anecdote and wishful thinking.
The future of autism-friendly design mainly depends on the translation skills of architects and their judgment of the quality of the information which is all around and growing. Affinity with autism remains key and arises in part, more than one might think, from personal experience with autistic family members such as Simon Humphreys’ brother or the children of Keith McAllister, AJ Paron-Wildes and so many other architects.