Autism and architecture; architecture and autism… the link between experiencing and creating spaces for those on the spectrum
I started writing this for a specific audience - normal folk
– as I feel compelled to advocate for and educate on behalf of people with
mental disorders. I am acutely aware of the difference between them and us.
However, after several drafts it occurred to me that targeting an audience was
prejudicial and not unlike the treatment most people with disability experience
in their daily lives. I’m hoping that for readers with mental disabilities my
words express solidarity, you are not alone – we are not alone.
There are quite a few of us neurodiverse folk, but
not enough to have any impact on the built environment in as far that the
buildings we occupy are designed to be comfortable for the others, and not for our
specific and diverse needs. This is
unfortunate as an environment comfortable for the neurodiverse is also
comfortable for the neurotypical, perhaps even more so. With comfort I’m not
talking about accessibility or parking or toilets and other amenities as we
have building regulations that mandate equity – I’m talking about how occupants
feel – with their senses.
There are a lot of misconceptions about autism and this is not
helped by stereotypical characterisations in television and film. Many of us might even appear normal,
well-practiced in the art of wearing a mask of normality; although, there might
be something a little odd about us you just can’t quite put your finger
on. We are not Mr. Bean, the Rain Man or
Good Doctor, although we might be. We
might also be non-verbal, and deemed profoundly dis-abled – by a society
who decides where the line between abled and disabled is drawn. Disability is
not always visible; we can be invisible. Autism is a spectrum and diverse in
its manifestation – no two neurodiverse people are the same, just as no two neurotypical
people are.
A significant misconception is this idea of high-functioning
autism – which suggests that sufferers are in some way more able and more
functional than other autistic people.
This is a neurotypical label that simply describes the ability of some
autistic people to appear normal and fit in… i.e. they look and act like us
normal people so they must be high-functioning. This is a dangerous
assumption and it’s more accurate to say that autistic people can have
high-functioning days. An appearance of
normality may belie an underlying maelstrom of torment in the mind where you
are just trying to get through the day without having a meltdown, trying to
make it through the night and see another day.
Rates of suicide in the autistic community are many times higher than in
the neurotypical community – anywhere between three and ten times greater
depending on the study. I wanted to address this misconception as it’s
important – to the neurotypical people reading, take extra care of your autistic
friends and family – they are more sensitive to life’s challenges and less
capable of dealing with them.
I should at this point disclose that I am an architect, and
I am autistic. My late diagnosis, aged
51, was a revelation, and explained many of the challenges I have faced from
childhood, through adolescence and in to adulthood. Following many visits to psychiatrists and
psychologists; following many counselling sessions and cognitive behavioural
therapy; following misdiagnosis and medication for borderline personality
disorder, emotional deprivation disorder, anxiety and depression, I finally
have the correct user manual for my brain and can start living my life. It’s difficult to express in words how this
feels – the best analogy I can use is imagining that the world you once knew in
black and white, is now in colour.
I have been questioning how this revelation might impact on
my approach to architecture and the practice of architecture – but I will get
to this later in another post. Firstly,
I want to speak of my own personal experience of autism, and disclose who I am,
mask off.
Dispelling the myth(s)…
For me, autism means both being misunderstood and frequently
misunderstanding other people. It’s
impossible to fit in with a crowd when you don’t understand the subtle and
unwritten rules of engagement. I’m
socially awkward, never really knowing what to say or how to initiate a
conversation. When I’m feeling outgoing
it looks like I’m trying to be funny but I’ll end up offending someone, and
mostly I’ll have no idea what I have said or done wrong until after the event
and then I’ll feel the angst of having upset someone. This is a good way to lose friends and have a
group alienate you, compounding your feelings of being an outsider and
different. This becomes very apparent
in the teenage years, when you most desperately want to fit in. When I’m not feeling outgoing, I’ll be on the
periphery as an observer and afraid to engage.
Alcohol allows the mask to slip - unfortunately this removes the very
small neurotypical filter I have and increases my chances of offending someone.
Autism makes it difficult to make friends and easy to lose the few you might
have. To have healthy relationships you
need to be able to relate to people and make an effort to share experiences and
common interests, which is not easy when you are autistic and happy pursuing
your own special interests and comfortable spending a lot of time alone. Like many on the autism spectrum I find it
difficult to keep in touch with people – family and friends, and slowly but
surely, they drift out of my life and become distant. At its worst, misunderstanding the
motivations and actions of others may make you an easy target. As a child I was abused by a neighbour’s son and
I was incapable of seeing that I was being manipulated and groomed. There are
predators out there – decades later mine narrowly avoided gaol for manslaughter
for excessive force as a police officer that led to the death of an innocent
bystander. Being unable to read the intent of someone’s actions is a key social
skill lacking in many autistic people, we are easy targets – and when under
stress or in a confrontational situation we often lose our ability to speak up
at the time we most need to, we are mute.
In the workplace, autism may result in something said in the
wrong setting; for example, in a project planning meeting my manager mentioned
that the equestrian club was folding – and before a second had passed I
commented that “I thought it was the origami club that was folding.” Those that work with me, or have worked with
me, could probably recount many more examples where I have interjected with
inappropriate comments. These comments
are always intended with humour in mind; however afterwards I can obsess about
how my comments were received and what people thought and how I might be judged. When these thoughts enter my head, I have a
compulsion to get them out, it’s involuntary and a bit like Tourette’s without
the profane language.
In social settings, along with most autistic people, I find
small talk painful. I have learned to do
it but it’s been learned through observation and practised – there is nothing
natural or spontaneous. Don’t talk to me
about the footy or tips for the Melbourne Cup… I have no interest whatsoever
and I will actively avoid putting myself in situations where I need to talk
about the weather. I will check my
calendar to make sure I’m out of the office or in a meeting any time there’s a
morning tea or social function. I don’t
get social conventions – I know I’m supposed to say good morning and goodbye
when I leave, but it feels so damn uncomfortable doing so and mostly I just
don’t.
The autistic often have extreme sensory difficulties and I
am no exception. I’m triggered by the
everyday noises people make like eating, slurping, crunching, chewing, talking,
coughing, sneezing, nose-blowing, humming, whistling and singing; I’m triggered
by heat and I’m distracted by movement. In
a room I am taking everything in, every detail from every sense. It can be overwhelming and exhausting. Other autistic people may be triggered by
fluorescent lights or the hum of electrical equipment; others by the smell of
cleaning products and sprays. These
sensitivities can trigger the flight or fight response in the brain’s amygdala
– and cause a meltdown if the pressure isn’t relieved – usually by leaving the
room. It makes it very difficult to work
in an open plan office environment or be surrounded by large numbers of people
or be in busy places like shopping centres or airports. You might wonder why many autistic people
wear noise-cancelling headphones and take frequent breaks – now you know. We
are simply managing the intense sensory input we feel so we can function in a
neurotypical world.
Many autistic people are only comfortable in their own
worlds, which they can control. They
like order and repetition and don’t like changes in routine. I can eat the same lunch every day for years,
and I must leave the office at 8 am for a coffee and at 12 noon for a
walk. Like many autistic people I don’t
like unexpected sensory surprises… and as much as I like dogs, I feel
uncomfortable around them as they are so unpredictable and can bark at random
or try to sniff with a wet nose. Lately
it's occurred to me that an aversion to unpredictability is why I don’t like
musicals as I find people breaking into song and dance at random very
unsettling.
People have asked me “how can someone so smart be so
stupid?” Many autistic people have
learning disabilities but you wouldn’t know it as they can be academically
gifted. I have university-level
qualifications in architecture, property, building conservation and planning
and one semester made the Vice Chancellor’s list and was ranked in the top 1%
of students – and yet I have a learning disability. I am a visual thinker and
cannot pick things up by verbal instruction and I cannot keep up with the
teachers in a classroom setting and always fall behind, particularly learning
new software – I always seem to press the wrong key and am afraid to ask
questions and interrupt. I need to write
things down, draw diagrams, understand the processes and work my way through
the material to reach a level of competence in any task I’m happy with. Autism is a different way of approaching
tasks, and we will always question and need to understand the “why” in every
sequence. The autistic will learn differently, but they will learn nonetheless
– and often they are experts in their fields. Autistic people have made great
contributions to science… Cavendish, Einstein, Newton and Tesla, and, to the
arts… Joyce, Kubrick, Warhol and Yeats to name but a few. The vast majority of
us, both neurotypical and neurodiverse, will not go on and change the world –
but we can all equally make a valid contribution.
For me, autism isn’t a disorder and isn’t a disease. It doesn’t need treatment, nor a cure; it
needs understanding, acceptance and accommodation – from employers, family and
friends.
Everyone on the spectrum is different and will require a
range of accommodations to enable performing to the best of our
abilities – heck, we might even appear to be normal and fit in if the
environment is right. The accommodations
in the workplace might be very simple, such as permission to wear headphones in
the office or a different seating position.
It might involve a tweak in a job description, or a different management
style. In our personal relationships we
just need understanding more than anything else and tolerance – sometimes we
need time alone, sometimes we are happy to be with people as observers,
sometimes as social participants. We
need open, clear and unambiguous dialogue and an opportunity for clarification
to avoid and clear up any misunderstandings and miscommunications before they
become issues along the way.
Autism is a different way of thinking and experiencing the
world, but it is a way that is no less valid than the neurotypical way and may
lead to new ideas and creative ways of solving problems.
If you have read this far, thank you. I’m at the start of my
autism journey, albeit with a lifetime of experience. I’m not sure where this
journey will lead me, but I do want to start a conversation on autism and my
vocation as an architect as this is one area where I feel I can make a
difference.
Samuel Fardoe, Architect
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