NEURODIVERSITY FEATURE
As a group, our neurodiversity means that, while we share
some similarities, we also have unique subjective experiences
of occupation, and of life. Common amongst us is the shared
experience of environments, including work, in which
acknowledgement or support of our neurodiversity has been limited
or, at times, non-existent.
Rebecca Twinley, senior lecturer in occupational therapy at the
University of Brighton received the official diagnosis that she is
autistic on 29 October 2019. Rebecca took to Twitter and shared
about receiving her diagnosis and was immediately met with support
and comments that offered her further insight and revelations.
As a late diagnosed person, Rebecca says she shares some
experiences of other late-diagnosed autistic women, such as the
costs of masking (which involves camouflaging or compensating for
difficulties), difficulty maintaining relationships, being misunderstood
in the working environment, and being sexually victimised (Bargiela,
Steward and Mandy 2016).
‘Feeling somewhat liberated from this mask, I was keen to share
my experience and to involve others in this venture.’
Collaborating with six others to share their individual narratives,
Rebecca says that ‘at its heart is the understanding that
neurodivergent people are everywhere’.
She says: ‘These narratives of our daily lives are intended
to describe the lived experiences of neurodiverse occupational
therapists, as insiders in the worlds of both occupational therapy
and disability’.
‘Our narratives are informed by both our lived experience
(as them) and our professional training and socialisation (as us).
The extent to which we, as a group of individuals, feel we fit
in, belong, are accepted, understood, or even are open about
our neuordivergency differs. Indeed, many of us have learnt to
blend in or to mask and some of us have been misunderstood or
misperceived’.
‘We have chosen to state our neurotypes for the purpose of
navigating the reader to our individual forms of wiring, while being
aware this may be perceived as undermining the neurodiverse
principle of being more than our disability’.
Rebecca’s neurotype is autistic and post-traumatic stress
disorder (PTSD). She has insomnia, often waking in the early hours
and never getting back to sleep – a result of sleeping to an imposed
pattern.
‘I tend to go over any conversations from the day; like a check
to make sure I didn’t say the wrong thing,’ she says. ‘Often I lay in a
high state of anxiety – worrying about everything possible.’
Rebecca has auditory sensitivities to certain frequencies, loud
noises, and combined sounds; she masks the car heater sound by
turning the music volume up. ‘It doesn’t cause pain, but it feels like
an intrusion in my ears,’ she says. ‘My hearing is definitely a sense
that is turned up too high.’
When it comes to work, Rebecca is in the office by 8am, ‘then
I can be confident my usual parking space will be free, and there
aren’t many people about’. She adds: ‘In my previous job, I kept
getting thrown because the usual car park was closed for repairs,
so my space was less predictable, which caused a palpable sense
of anxiety.’
As the first person in, this means Rebecca can set the lighting
– ‘so I am not directly under the invasive fluorescent LED ceiling
lights’ and she aims for ‘as dark as possible’ by switching desk
lamps on.
‘My colleagues seem to not mind,’ she says. ‘A previous
colleague used to come in, switching all the lights on. Each time I
was momentarily debilitated, and then it completely distracted me.
It can feel like wanting to press a refresh button and hope the overstimulating
light disappears…
‘My office flooring is the worst type of carpet for me. It is Nylon
or Polypropylene and it can make me feel very itchy. When I am
very sensitive – usually when extremely tired – I can hear it. If people
walk on it or, worse, roll their office chair across it, I can hear an
electric crackling sound.
‘My GP asked how I “coped” with working as an occupational
therapist or, now, as a lecturer. I tried to explain these roles are
well defined, have pre-set rules, boundaries, and expectations.
The challenging part is when the floor opens for discussion.
Conferences are particularly overwhelming and exhausting, with the
sounds, lights, and audience questions. Even when talking about a
topic I know well, I fear these unstructured moments.
‘This is compounded by my awareness that I have unreliable
auditory processing. When noticed, people (including those close to
me) have thought I was ignoring them or was not interested in what
they were saying… I have learnt to try to listen for the important
points while a person talks to me, but I’m often reminded of the
content I lose when another person was listening to the same
conversation and we discuss it together afterwards.’
Danielle Hitch, senior lecturer in occupational therapy, Deakin
University in Australia, has attention deficit disorder and epilepsy.
While the early moments of a day are ‘peaceful and calm’, she
explains that ‘after about 20 seconds my brain roars into life’.
‘My thoughts quickly accelerate, multiply, tumble over each
other – they say having ADHD is like being driven by an engine;
sometimes I am in the driving seat, but sometimes my brain drives
me.’
She says of a typical day: ‘I need at least an hour to have a
shower, get dressed, and eat breakfast – about 25 per cent of that
time I’m doing those things and the rest of the time I’m wandering
aimlessly, twisting my already curly hair, getting lost on the internet,
or looking for the many things I lose every day.
‘My drive to work is filled with music, played at high volume
and frequently shuffled partway through the song. I work in a small
office with four other people, and it’s an extremely challenging
environment for a brain like mine.
‘My current colleagues know I have ADHD and are supportive,
but in the past I’ve had colleagues try to have me removed from my
job because they thought my epilepsy (well controlled) was a risk.
‘They even said: “It’s such as shame because you are actually
quite a good occupational therapist”. Does being anything other
than neurotypical mean you can’t also be a good occupational
OTnews August 2020 33