ISSUE NO. 3
MASKING AN INSIDE LOOK ON THE AUTISM SPECTRUM
THE AUTISTIC ENTREPRENEUR
Q&A WITH ALANNA WHITNEY
AUTISTIC AND LGBT+: WHAT DOES IT MEAN?
Navigating the business world on the spectrum
The creator of #RedInstead
A personal feature from the editor
Special Thanks To: Eleanor Bennett Alanna Rose Whitney Kieran Rose and Barbara, Paul and Jack Armstrong
Cover art and Editor Avatar by Sali255
editor's letter
I feel it’s cliché to begin almost every edition of Masking magazine with a declaration of thanks but I just can’t help it! The responses to both the first and second issue have been wonderful and I’m proud to present the third edition of Masking just in time for the end of 2018! It’s been such an interesting year for neurodivergence and disability activism and I only hope 2019 will be an even more positive year for neurodiversity. In this edition of Masking, Madge Woollard writes about being an autistic entrepreneur in the competitive world of business, we’ve asked our readers what they think of the holiday season and a Q&A with Alanna Whitney, the original creator of the hashtag #REDInstead. It’s been a wonderful year developing this project and I can only hope it will continue far into 2019. On behalf of myself and to all of you who have contributed, supported and read Masking magazine, my deepest thanks to all of you. I wish you all happy holidays and a great 2019! If you would like to leave some feedback or support for this issue, tweet your thoughts @MaskingMagazine! Best wishes,
Olivia Armstrong
contents 1 AUTISTIC AND LGBT+? WHAT DOES IT MEAN?
9 BEING AN AUTISTIC ENTREPENUERÂ
5 AUTISTIC LINGO!
13 WHAT CAN A DIAGNOSIS MEAN?
18 PERSONAL ANECDOTE
22 Q&A WITH ALANNA WHITNEY
26 PASSIONATE HOBBIES!
31
29
WHAT DO WE THINK OF ...? THE HOLIDAYS!
FILM REVIEW MY NAME IS KHAN
33 TAKE THE MASK OFF
WORDS: OLIVIA ARMSTRONG
autistic and lgbt+? what does it mean? A Personal Feature from the Editor 1
I n the first issue of Masking, I wrote an article
But after that surprise faded, it was generally
titled “Queer and Autistic? It’s More Likely than
seen as a non-issue. By contrast, people who I
You Think”, which explored the prevalence of
could tell did not like me or made me
many autistic people who identify on the
uncomfortable would immediately peg
LGBT+ spectrum. The article explored both the
something as ‘not right’ about me. In the time
stigma of marginalised identities and the
since then, I have discovered the statement
discrimination that can experienced in
‘you don’t look…’ can apply to almost anything.
identifying as both LGBT+ and autistic, such as
When people act surprised or doubtful of an
not being believed about your own identity or
LGBT+ person coming out to them, many of
not being trusted to make your own decisions.
their arguments for being so usually revolve back to the fact that they don’t think that they
One of the studies mentioned in the article
look or behave how they imagine someone on
came from Dr Mark Stokes from La Trobe
the LGBT+ spectrum might act.
University in Melbourne, Australia. The 2017 study stated that “when compared to controls,
This is one of the many parallels one can make
individuals with ASD demonstrated
with being autistic; due to media portrayals
significantly higher sexual diversity, reported
and unfortunate lack of support towards
gender-identities incongruent with their
autistic people, there is no denying that a
biological sex and higher gender-dysmorphic
neurotypical view of autism can sometimes be
symptomatology.”
very narrow and dependant on the media they have been exposed to. This was covered in the
While studies are incredibly important, I also
previous issue, addressing the fact that many
find that some of the best experience is
non-white autistic people often struggle with
personal in nature. Therefore, I will share parts
receiving help or changing the perception of
of my own journey and discoveries regarding
their autism because they are so under-
myself in hopes of showing a clearer
represented in the media. Similarly, despite
understanding of how being autistic and
several studies indicating that individuals on
LGBT+ can often be felt to go hand in hand
the spectrum are more likely to identify
with each other for many people.
differently from heterosexual or cis-gender than a neurotypical person, there remains an
Although it would take me several years to
unspoken discussion regarding the
come out to members of my family (who were
intersectional aspect of being LGBT+ and being
thankfully very supportive and accepting), I
autistic.
came out to myself as a lesbian in the same year I received my diagnosis in my late teens.
I’ve had several people in my life tell me that I
With this, I would begin a notice a number of
changed the way they viewed autistic people
parallels between the two as I became more
based on my presentation and behaviour.
open about both in the following years. In
There is no doubt I have become better at
terms of my being autistic, I made note of the
masking (defined on page 5) as the years have
fact that people who liked me instantly were
gone by but I also have never made any secret
generally surprised when I told them, stating
of my being on the spectrum. Likewise, I have
that they would never have guessed.
never made any secret of sexuality unless I
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believe I am in a situation that may cause me harm if I were to be open. Similar to masking, this is an act of self-preservation with the understanding that what the world ought to be and what the world is are often two very different realities. Just because I shouldn’t be judged for identifying as LGBT+ doesn’t necessarily mean I never am. Similarly, I know I have every right to be open about my autism and think nothing of it yet there are certain situations in which I can tell it would negatively impact my current wellbeing to be so brazen. It is so unfortunate that we should have to mask two or more aspects of our being that are such important pieces to ourselves. However, when I am told by friends old and new that I was the one to change the image of autism in their eyes, I always respond (in the kindest manner possible) that all that statement means is that they haven’t met many (or any) autistic people. Identity is a curious thing. We live in a world insists we not define ourselves by labels and yet they are either applied
"Despite several studies indicating that individuals on the spectrum are more likely to identify differently from heterosexual or cisgender than a neurotypical person, there remains an unspoken discussion regarding the intersectional aspect of being LGBT+ and being autistic."
without our knowledge or by our own selves as a way of understanding who we are. A world in which we aren’t defined by how we label or identify ourselves would also require a world in which we aren’t judged for those identifiers. And as said before, what our world should be and what it is are two different realities. Autism is a naturally intersectional neurotype. This is one of its great attributes; the fact that every person on the spectrum is different and no two autistic people are the same. One of the many upsides to the platforming of autistic voices on these matters is that these identities can be explored and discussed with how they relate to the world we live in. The world only spins forward and we become closer and closer each day to a world in which we don’t have to hide any part of ourselves simply by opening up about them.
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5
Autistic Lingo!!
Stimming – Short for ‘self-stimulatory behaviour’. This is a set of specific behaviours that can include repetition of physical movements, sounds or words. Autistic people can stim for a variety of reasons such as a way of calming down in distressing situations, a form of self-regulation or as a show of happiness or relaxation. Common forms of stimming include handflapping, playing with a stim toy, repetition of certain words such song lyrics and rocking back and forth.
Non – verbal – A non-verbal autistic person either cannot or chooses not to speak. Many may communicate through sign language or alternative methods of non-verbal communication. Some autistic people are completely non-verbal while others can be partially non-verbal, being unable to speak in times of extreme stress due to sensory overload or a meltdown.
Burnout – Autistic burnout occurs due to build-up of stress, anxiety or pressures of masking for extended periods of time. This can lead to exhaustion and lack of ability to function in a neurotypical environment. Unlike an autistic meltdown, autistic burnout can last for up to several days depending on severity.
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If you’re new to the autistic community, chances are you’ve come across a word or phrase that sounds unfamiliar to you and you’ve resisted the urge to Google. Fear not! This section presents a go-to guide for any words or phrases used regularly by the autistic community, as well as many other neurodivergent communities.
Sensory Overload – Sensory overload occurs when one or more of an autistic persons senses receive too much information or stimuli, resulting in oversensitivity to their current environment. For example, hypersensitivity to light, smell, sound or texture can cause a sensory overload. In the event of this, the person in question will seek to remove themselves from the environment they are currently in in an attempt to find a safe space without excessive stimuli. This allows their senses to regain balance.
Meltdown – Meltdowns can occur when too much stimuli causes an autistic person severe distress, resulting in extreme anxiety and lack of control. This commonly occurs in crowded spaces due to sensory overload, although it can also happen when an autistic person is by themselves. This can lead to responses such as stimming, panic or anxiety attacks, hyperventilating, being non-verbal or crying. It is different to a tantrum as it cannot be controlled and is not a response of anger. It is a response of panic and/or fear. They are usually followed by a ‘calm-down’ period, which can last from half to several hours.
Masking – Masking is a term used by many autistic people to refer to the need to ‘mask’ many of their autistic traits in order to ‘pass’ in a neurotypical society. It is common among autistic adults, although many autistic children (especially girls and women) are known to mask. Masking is both a mentally and physically exhausting experience and masking for long periods of time can result in burnout, stress and fatigue.
WORDS: MADGE WOOLLARD
BEING AN AUTISTIC ENTREPENUER Navigating the business world on the spectrum 9
R unning our own business is, in theory, ideal for
Nowadays it's harder to gain new private
those of us autistic adults who are able to work.
customers and I am not internet-savvy enough
We don't have to answer to anyone, we can set
to promote myself much online. But many of my
our own conditions and schedules and we can
students stay for years and I have a good annual
focus on our special areas of interest and
turnover through the work I do in schools. I have
expertise. In this article, I will look at my own and
rarely been full to capacity but rarely out of work
others' experiences of being an autistic
either.
entrepreneur in the hope that it will encourage readers who perhaps have dreams of running a
Autism has undoubtedly helped in the day-to-
business.
day running of my business. I am single-minded and focused. I try never to judge anyone and
For over 20 years now, I have taught piano and
treat all my clients fairly and equally. At a young
keyboard privately and in schools. It has had its
age, I devised a system of a mental calendar and
ups and downs but for the most part it was fairly
diary in which I am able to 'see' in my mind's
successful. I believe I have autism to thank for
eye. So, although I do write appointments down
starting the business in the first place, long
and occasionally forget, I rarely have to refer to a
before my diagnosis or even suspecting that I
diary (until I realised I was autistic, I thought this
might be on the spectrum. After completing a
was something everyone did!). I am also pretty
music degree, I took a PGCE in primary teaching
good at playing the piano, a skill honed in my
with music specialism. My intention back then
teenage years when most of my peers were out
was to become a classroom teacher. But after
socialising.
months of applying for 60 jobs and travelling up and down the UK for interviews, I was getting
There have been negatives as well. The main one
nowhere. I struggle immensely in interviews and
is exhaustion. I see a diverse range of students
any attributes I might have had as a class
for up to 6-7 hours each day while trying to tailor
teacher were never picked up. I had to think of a
their needs and my communication style
Plan B.
towards each one. I often feel like a wrung-out dishcloth in the evenings (although I do have
I realised I was not suited to classroom teaching
long school holidays to recuperate). I am
anyway and never looked back. Piano was always
masking most of the time at work (acting out an
my go-to interest that had seen me through
expected role so that my autistic shortcomings
difficult teenage years and I had been lucky to
are not evident) and after a while, it inevitably
attend a secondary school that specialised in
takes its toll.
top-class instrumental teaching. I was also fortunate to be starting my business in the mid-
However, I think working for someone else with
1990s, when new start-ups could receive a
no control over my schedule would have taken a
substantial grant in return for attending a six-
far greater effect on my mental health. I have
week course to learn useful things like business
also become aware since my diagnosis two years
plans and tax returns. Most of my students came
ago of how sensitive I am to noise. If there is any
from a few cards in newsagents' windows and
background noise at all while I am teaching, I
later via word of mouth.
struggle to filter it out.
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I am proud of my job and what I have achieved in it. Some of my proudest moments have been the autistic students I have taught, who are clearly comfortable with my teaching style. One whom I have taught since the age of 9 is about to embark on a music degree while playing semi-professionally and is an excellent composer. My dream is to teach more pupils like him, pupils who are not necessarily gifted but for whom music is their passion and go-to hobby as it was for me. I also enjoy teaching adults because they really want to be there and are easier to communicate with about what they hope to achieve through music. In researching this article, I contacted a couple of other autistic entrepreneurs and asked them about how autism has affected their business. Vaughan Simons is a web designer and content editor. He agrees that his autism has helped him with focus and attention to detail but like me, he struggles to deal with the self-promotion and marketing side of the business. James Dickenson runs a business making sewn disability products such as weighted blankets and adapted clothing. He enjoys working within his special interests and his autism has given him a unique understanding of how deep pressure therapy can help people. But he also finds it hard to know what language to use when promoting the business and making marketing links.
"I am masking most of the time at work, which consists of acting in an expected role so that my autistic shortcomings are not evident and after a while, this inevitably takes its toll." In summary, what advice would I give to would-be entrepreneurs? Choose a business that is related to something that you're passionate about: that way (to quote a cliché) you will never feel like you're doing a day's work in your life. Believe in yourself and trust that you have unique skills to offer. However, be prepared to experience some discomfort around your client market at times who will likely be predominantly neurotypical. Seek advice and assistance when it comes to promoting and advertising your business, as this is an area we may be less comfortable with. Don't expect to make pots of money (the average small business turnover is £13.5 K pa, according to HMRC's Personal Income Statistics). You will not get sick pay or job security and you will have to sort out your own insurance and pension so it is not for the fainthearted. But in my view, doing something I love and contributing my own unique skills are well worth it. Looking back on what I have achieved personally through my business is one of the best feelings in the world. My advice is, go for it!
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WORDS: OLIVIA ARMSTRONG
what can a diagnosis mean? Please note that this article contains descriptions of violent domestic abuse and mention of sexual abuse. Reader discretion is advised. 13
M any autistic people receive a diagnosis at different points in life. For some it can be within the first few years, with neurodivergence showing early in life warranting an early diagnosis. For others, it can come later in life for a host of sociological reasons. These reasons can vary from one person to another and many autistic people receive a late diagnosis due to difficult circumstances that would have made an earlier diagnosis impossible. Award-winning photographer Eleanor Bennett is one such person and says that she feels an earlier diagnosis would have drastically improved her life through childhood. However, her family situation made the pursuit difficult. “The real reason I couldn’t push for a formal diagnosis earlier was because I grew up in an extremely violent household,” she says. “I was never the protagonist of my own story and my life for so long had been in survival mode to try and live in a desperate situation because of the sheer lack of anyone willing to help, while being extremely quick to victim-blame me and my mother. “I pushed for a diagnosis and was put on the waiting list around the age of twenty. I got my diagnosis in January 2018 when I was twentyone. I partially wanted the protection that came along with an official diagnosis, as I had been made redundant from my first job and subsequently faced a lot of difficulty in the traditional interview process, which was mentally exhausting over the period I was waiting to be evaluated.“It would have been far better to have been diagnosed early. If the situation I lived in could have been different, I imagine I would have had more access to therapy and healthier coping mechanisms that
go along with that. I don’t imagine I would have had as much anxiety and meltdowns growing up as I did.” Eleanor also believes that the dismissive attitudes that she encountered when seeking a diagnosis was rooted in her not being believed to fit a neurotypical view of an autistic person. “When I was going over old cases of my behaviour as a child with my mother, she mentioned how I went nine months after saying one word before I learnt how to say my second word,” she says. “She also talked about how obsessive I was at stacking blocks compared to the other children in the doctor’s waiting office prior to my vaccinations. When I first brought up to my therapist around the age of 18 that I thought I may be autistic, she said I was too eloquent and high functioning to see the point in wanting a diagnosis. “There were important milestones missed and when I first attempted primary school, I had speech impediments that were cited by my teachers but because my immune health was weak and I had so many breakdowns at school, I was taken out of that situation and home educated. I didn’t get on with children my own age and for that brief time I was only friends with much older children and was able to speak to adults with more ease. I feel like I now have official answers for all the questions I had about myself growing up. It has been a form of closure and has resulted in less self-blame & beating myself up about not being about to manage everything due to poor executive functioning instead of just spending a lot of my life thinking ‘I’m just bad at being a person’.” However, this lack of support extended to Eleanor’s home life in the context of the horrific abuse she received in her home and she feels the result of this came just as much from being
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a young woman growing up in an abusive
heard about because people were blaming the
household as it did from being neurodivergent.
girl decades later in the form of a joke. “It seems
“I have had so many experiences growing up in
as a disabled woman, you are going to face
a house dominated by domestic abuse of
stigma every which way. But as recent news has
sexism, gendered violence, victim blaming &
shown, it seems the concept of reputation is a
even the threat of sexual violence,” she says.
citation note against our existence for all women. My good reputation has to be required
“When I recorded my abuser threatening to kill
at all times to be seen as a person at bare
me and my mother and even going so far as
minimum but if someone commits an act of
threatening to sexually assault me, it still wasn’t
violence against me their reputation can be in
enough. Our solicitor was apathetic and advised
the absolute dregs and they’ll still be sided with
that I should run away from home. When I was
over me.”
threatened with a gun and had bullets shot past my head at the age of fifteen, the police made
However, Eleanor’s love and talent in
an alibi for the perpetrator who had previously
photography has since enabled her to build a
neglected his last family so much his kids were
successful career, as well as a business in selling
taken into care. He had previously committed
rare antiques, which helped her in moving away
statutory rape many years before, which I only
from her abusive situation. She has currently
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won over fifty awards for her photography and
camera and not being allowed to leave the
her passion in her work speaks for itself.
house by myself, it felt like a gift to ‘see the world differently’.”
“In my photography and my ability to find rare and valuable antiques, people have always said I
Growing up as an autistic woman in an abusive
have an eye for quality. It’s funny when you
situation is a harrowing experience and when
compare my struggling to recognise someone
asked what she would say to those who may
when I have an anxiety attack (and suffering
be struggling with experiences similar to hers,
from face blindness because of it) compared to
Eleanor emphasises the importance of self-love
how on the ball I am when I’m finding rare
and reassurance, even in the faces of those
antiques amongst thousands of listings in an
who demean you.
auction. It’s like the two forces should contradict each other. When I worked in a field
“I think it necessary to tell yourself every day
like photography (in which the people who
that you deserve better than what you have
were largely winning awards had far more
been through, as many times you are the only
expensive equipment and access to travel the
person reaffirming that statement to yourself.
world) when I won the majority of the
Try to care less, take care of yourself first and
competitions with images taken with £90
stop blaming yourself for not being good at everything. Grow to be defiant and don’t listen to anyone who blames you for daring to exist.”
If you are living in the United Kingdom and struggling with domestic abuse, the Domestic Violence Helpline 0808 2000 247 is open 24 hours a day.
Photos by Eleanor Bennett
personal anecdote Words: Jo Worgan An open letter from Jo Worgan to her son about her experience in parenting.
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D ear Son, I don’t know how to start this letter so I'm just going to write and see where it takes me. But I want you to know that you are loved. You changed my life completely and you have made me a better person. Autism. It’s a word that conjures up many images and meanings. There is still so much confusion around it and I'll admit that when the first seeds were planted (in that you may be autistic), I didn't know an awful lot about it. So I sought information. I joined the National Autistic Society and I searched for information and advice from those who were parenting a child on the spectrum. I needed this information to help you and to understand how I could better help you navigate and understand the world. After all, isn’t that what every parent does? When you were born and I was told that you were a boy, I was so happy. I had two boys, who I hoped would grow to be close and care for each other and that has actually come true. Your older brother (of sixteen months) is caring and fiercely protective of you. You love each other dearly and share such a strong bond, and this has been the case since you were toddlers. Those early pre school days were all about getting to know you: what made you feel anxious when out and about in the world and what made you feel safe, the need to go the same route around town, that need for routine and sameness that we as a family embraced and accepted. It's now part of our everyday life, as it makes you feel happy and secure. I remember the days at the local children's centre when I was first introduced to parents caring for a child with additional needs and you and your brother were able to play with other children and simply have fun. You loved the sensory room with the bubble tubes and all the textured cushions and fabrics, which then inspired me to make a sensory box for you at home. Those days were so vey special and helped me to know you. You love trains. You always loved trains and when you were little, I would take you and your brother on the train to Morecambe. It was the highlight of the day. Not the ice cream on the prom, nor the big plate of chips in the café, nor the soft play but the train. You still love the train today, but it is now a Daddy treat, a boys only trip and that's okay with me.
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o
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w
w
s
T
s
s
w
t
t
I'm still trying to work this parenting thing out. I think all parents are, no matter if their
a
child has additional needs or not. I simply make it up as I go along but I think I am doing okay. I try to think as you would think, how you feel about any given situation
Â
but this is sometimes difficult to do. When we go out I am always thinking if the traffic
a
is too loud, if the lights in the shop are too bright, or if you simply need that quiet and
w
familiar solace of home. I am always on the defensive for those who may look or say things that are not nice. They don't know you. When you were three, you found it very difficult when travelling on the bus and we had to get to nursery on the bus and into town. You coped well with the rumbles and vibrations and the fact that the bus could be busy at times. You would sometimes throw yourself onto the floor to feel safe and I would simply coax you up and cuddle you tight, giving you a fidget toy. We got to know most of the people on the bus and they understood. Most people are kind. One day, when we were travelling back from a good trip to town, we encountered a not-so nice lady. She didn't understand you and why you were shouting to get off the bus. I was keeping you calm while checking that your brother was okay, but this lady was said that you were a naughty boy.Â
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When I told her that you were finding the bus journey difficult due to your autism, she told me that there is no such thing as autism and that it is just an excuse for naughty children.This made me feel sad, as it did your brother. I often remember that trip, not because of the nasty lady, but because of what your brother told me and you. He said that the lady was not very clever and that she didn't know you. He told me that it wasn't your fault and that the lady needed lessons. He also said that she wouldn’t know what a palaeontologist was. He was four at the time. We've all got your back. But I want to add that we have so much fun. Life with you is fun and you bring me so much joy. I love our walks along the canal where we look for birds in the trees and the ducks in the water (although I usually forget to take any bread). I love our trips to the Shore Café and I am always so proud when you reluctantly agree to sit somewhere else that is not your usual table as someone is already sat there. I love our trips to town that always end up in the supermarket café, with you enjoying your chocolate brownie and banana. You are such a funny little boy and you make us all laugh. You are so very clever with how you store information and can remember things from when you were only a few years old. I have no idea how you do it but it fascinates me and as you grow older, I know that I will learn more about you and all the wonderful things that you can do. I am a mum who is just doing her best. I love you, you're my little boy. We all love you. Mum
Jo Worgan is a published author of her new book Picking Up the Pieces. Check out her amazon page and Urbane author page! Amazon: https://www.amazon.co.uk/Picking-Up-Pieces-JoWorgan-ebook/dp/B07HLQ2RWL/ref=tmm_kin_swatch_0? _encoding=UTF8&qid=&sr= Urbane: https://urbanepublications.com/authors/jo-worgan/
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A Chat With... alanna whitney T his week, we're speaking to autistic activist
Hi Alanna! It’s great to talk to you.
Alanna Whitney, creator of the campaign
AW: Hey, thank-you so much for inviting me to
REDInstead. Alanna created the movement in
talk about REDinstead, I'm honoured!
protest to the controversial practices of
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American charity Autism Speaks, which has
What inspired you to start the REDInstead
been subject to a great deal of criticism in the
campaign?
autistic community. Autism Speaks created the
AW: Well, to be honest, it wasn't entirely my idea
campaign Light it Up Blue, with blue as the
alone so I can't take full credit. It began as a
official colour of World Autism Awareness Day
joint venture between myself and another
on April 2nd. However, Alanna explains to us
autistic activist and was originally called "Walk
why she created the counter-movement and
In Red" - it was designed as an alternative to the
what it represents for the autistic community.
fearmongering phenomenon of "Light It Up Blue."
Early on, the name "Walk In Red" was proposed by my partner in the endeavour, intended to represent the idea that nonautistic people should use April 1st as an opportunity to "walk a mile in our shoes" by listening to our first-hand stories (as opposed to those by our relatives and professionals) before participating in hashtags and events about us. But there was some feedback about the "walk" part excluding those who use wheelchairs and/or cannot walk (and I've never met an Autistic person who didn't fit most of the criteria for one of the types of Ehler's Danlos syndrome, and many EDS folk use mobility aids, myself included -- so the crossover makes that feedback even more significant). @autloveaccept) and the concept of shifting I was happy to change it. The other activist I
focus from "awareness" to true acceptance was
was working with was hurt and hesitant but
the key at the heart of it.
agreed to compromise and expand it to include #rollinRED #rockinRED etc. However,
Did you think that the campaign would catch
soon after that person became very angry and
on as well as it did?
antagonistic in their efforts to "convert" people
AW: Definitely not. I'm not particularly savvy
from LIUB to red, attacking and swearing at
when it comes to social media and I was so
both corporate accounts and individuals on
pleasantly surprised when the campaign
Twitter. I think this is something that almost all
touched so many people, that it made a
autistics can understand; it's really hard to
lasting impact. So much so that even when I
keep being sweet and gentle with people who
withdrew from the internet entirely after a
are intent on dehumanising us as a whole - in
failed suicide attempt and basically
fact, this is true for any activist from any
completely abandoned the #REDinstead
marginalised community - so while there really
account along with everything and everyone
were no hard feelings, it became clear that
else for most of a year, the hashtag kept on.
some distance was necessary when some kind suggestions from myself and others to take a
I couldn't believe that it was still going so
cue from #ToneItDownTaupe and ease off a
strong when I began wading back into
bit were met with spite. Thus I took control of
interacting with the community, stronger than
the Twitter account and changed it to
ever actually and definitely stronger than I was
#REDinstead - because red rhymes with
myself. This is not just a little idea, it's become
instead and because the important idea
a powerful movement that represents the
behind the campaign was inspired by yet
passion, perseverance and positivity of the
another hashtag #lovenotfear (via
autistic community and fills so many of us
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with so much joy to see each other sharing and
Why did you choose red?
supporting each other and that is thanks to all the
AW: Red is a great colour and there are many
amazing people who have taken part in it year
reasons for choosing it. You'll notice logos in the
after year.
corporate, political, sports and many other industries are divided primarily between red and
What does the campaign represent?
blue. They're not quite exact opposites on the
AW: The campaign represents all the best things
colour spectrum, but they're close. So red was
about autism and humanity in general; love,
chosen first as an alternative to blue because
passion, strength, truth and joy. It began with
psychologically it inspires different things; think of
people sharing pictures of their red shoes, then
the water taps in everyone's home - no matter
grew to all things red and spread like wildfire, so
what country, what language: blue is cold and red
now even some companies are joining in and
is hot. Red is powerful. Red for stop signs (to stop
switching from cold blue lights meant to "sound
the hate). Red hearts for love. That's the most
the alarm" to warm red tones that show the rich
important one, love.
depth and diversity of the autistic community as it truly is, rather than how a strategic marketing
Do you have any further plans concerning the
campaign decided we should be perceived for
campaign?
monetary profit to the detriment of our well-being.
AW: Not at present, no. I would love to be able to
24
fundraise and get sponsors to put up big billboards and ads around the world, but our competitors are billionaires who can afford to advertise and snag celebrity supporters, whilst most autistic people are living in abject poverty and can barely pay rent to keep a roof over our heads, let alone have extra to contribute to a global campaign that, while amazingly positive, won't directly help us avoid homelessness or abuse. If you could say one thing to those in the autistic community who are suffering, what would you say? AW: That I am there, too. I'm suffering myself right now in many ways and unfortunately there really isn't much that can ease that struggle any time soon - but the tides are changing. So many autistic activists are fighting for our rights and striving for better representation. It's a long, slow process and every step takes a big bite out of each one of us, but one day it will be better for the next generation of autistics. And in the meantime, seeing all of our peers get together, spanning the globe to share love and support and positive stories - that does make it a little bit easier to keep going. Sometimes I'm quick to forget how vibrant and loving the autistic community really is, because we all burn out and withdraw from time to time and because we're all working so hard just to exist. But every April when #REDinstead comes around, I see that passion burst and bloom, filling my screen with beauty just like spring flowers and that is always refreshing. Again, thanks so much for speaking with us! AW: Thank YOU. It's been a pleasure.
Follow Alanna Rose Whitney on Twitter @alannarwhitney.
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s! e i b b o H e t a n o i s s Pa This week, we asked our readers which hobbies and interests really got them thriving! Many autistic people have passionate hobbies and areas of interest and we're here to showcase them!
Autism! Though I prefer to call it work. - Kieran Rose Mythology and language. - Garrett Winters
In the past, circus arts and fire dancing. More recently Buddhism, Human Resources, mental health, and yoga. Also, people reading and communication styles. - Christa Holmans
I'm fascinated by the image we now call the Green Man. I maintain a Scottish gazetteer and a reference bibliography of about 1.5k entries. - Kath Baker
Harry Potter, wheelchairs (I'm a wheelchair user), cults (especially destructive ones), canals, autism, cats, NCIS, British Sign Language and Deaf culture (I often feel more at home in the Deaf community than the NT hearing community because Deaf and Autistic culture are so similar). - Katherine Ruth Last
Game of Thrones boxsets. - Melissa Simmonds Âû
Micro nature: noticing the tiny beauties. Native plants, gardening for nature. Specifically raising Lepidoptera. - Janine Kharey
Knitting & crocheting (they are different, after all!), collecting Funko Pops, Twin Peaks, The Beatles, the Harry Potter series and politics. - Kate Ross
Brace Design and problem solving. Any kind of design that solves a problem or provides a solution within parameters. I love discovering what is, what is wanted and finding a way to get from a to b. This has led me to focus on a variety of areas including gardening, architecture, leadership, art and craft, psychology, autism, project management and soon to be engulfed (I think) in coding. - Cecilia Van Raders
Conceptual understanding (and clinical application) of psychotherapeutic approaches that are person/relationship centred and make deeper level change rather than “fix symptoms� (e.g., Schema Therapy, attachment-based approaches, needs-based rather than medical model) and modifying the conceptual frameworks and techniques to counter neurotypical assumptions to make respectful/efficacious application across neurotypes possible. Also gardening and growing flowers, among my favourites are poppies (particularly Papaver Nudicaule & Papaver Rhoeas), Ranunculus Asiaticus, and Dahlias. - Dahlia McMittens
FILM REVIEW y Name is Khan is a 2010 Bollywood film M
WORDS; OLIVIA ARMSTRONG
begin to experience an increased hostility towards
directed by Karan Johar and starring Shah Rukh
them and after suffering a devastating series of
Khan and Kajol. Receiving a limited release in
events, Rizwan embarks on a journey to find the
the United States, the film tells the story of
American president to tell him and by extension
Rizwan Khan (Shah Rukh Khan), an autistic
the country “My name is Khan and I am not a
man who moves to the United States to live
terrorist.”
with his brother following his childhood in Mumbai, in which he has an affinity for
My Name is Khan is a unique film in that not only
machines, difficulty with eye contact, sensory
does it have a rare autistic character who is a
issues and a loving mother. He proceeds to fall
Muslim but it also addresses the intersectionality
in love with a Hindu single mother Mandira
that specifically comes with this distinction,
(Kajol) and the two are married, with Mandira
especially in a post-9/11 setting. This is best shown
taking Rizwan’s last name Khan.
in the opening scene of the film, in which Rizwan is detained and uncomfortably searched at an
However, their existence is thrown into chaos
airport on suspicion of terrorism, due to his
following the September 9/11 attacks as they
stimming behaviour alarming airport security.
This not only showcases the ableism he faces
In the future, we shall hopefully see increased
due to his autistic behaviour but also the racial
examples of autistic people of colour in film,
profiling many non-white people (especially
both in fiction and real life portrayals. My Name
Muslim) additionally face when it comes to
is Khan stands out as an important and
suspected criminal or terrorist behaviour. This
uncomfortable film about the diversity and
scene also reflects the personal experience of
intersectionality of the autism community
Rizwan’s actor Shah Rukh Khan, who was
which can manifest in harsh but important
famously detained in an American airport for
contrasts of how the experiences of autistic
over an hour during a publicity outing for the
people of colour deserve their own screen-
film.
time.Â
While it can be argued that the film is not subtle in the least in its portrayal of both racism and ableism, it also arguably has more resonance than it did when it released in 2010, as these aspects have become even more controversial in the wake of increased social awareness. While the film utilises its American setting, it is not necessarily made with a Western audience in mind. Therefore, the film is direct (often uncomfortably so) in depicting the hardships faced by many South-Asian people in the United States following the 9-11 attacks. However, this is also intersected with the way Rizwan is treated by the other characters due to his autism. People like his mother and wife are understanding to his needs and accommodate him, while other characters regard him with distain or suspicion. Shah Rukh Khan is one of the most famous Bollywood actors living today and if you happen to enjoy Bollywood films, it is almost impossible to not have seen some of his work. His performance in this film may strike some as fairly over-the-top but this is in keeping with the film’s tone of showing how an autistic person of colour is viewed and portrayed for a distinctly non-western audience. It is remarkable for being a rare film not only featuring an autistic Muslim lead character but also showcasing the direct hardships of how the two intersect in an environment that is hostile to both.
4/5
What do We Think Of...? The Holidays!
This time of year can be a great one but it can also bring hardships and difficulty due to the environment of the holidays. Families, friends, crowds, lights and television specials are all staples of this time of year. This week, we asked our readers what they thought were the pros and cons of the holiday season!
When I was younger, I absolutely HATED the holidays, especially because my dad didn't understand me and would pressure me to celebrate in the "normal" way, as well as harassing me for disliking the holidays and making up my own celebrations/occasions. Furthermore when I was in school, I didn't like being off and out of the school routine for four days around Thanksgiving and then a week and a half around Christmas/New Year's. However, now that I am in college, I don't mind being off and I am actually looking forward to the month break. In addition, my mom allows me to celebrate in my own way, so it usually works out fine. - Richard Hood
I realise that I subconsciously mask more than I realise around my family. - Christa Holmans
Best things - Relaxing with my wife. Seeing my family for a short while but never on Christmas day, we all prefer it that way!
Good - Special Christmas breakfast
Worst things - Lack of routine and
and decorating.
structuring my free time. Dark and
Bad - The heat is on so high
cold weather
everywhere I go. It dries me out and
- Madge Woollard
makes me sick - Debra McVay
Best - Music and low lighting, some smells and always the chocolate. Worst - People, so many people. Sudden plans and changes to said plans. Family and heavy masking. Some smells and bright lighting. Alcohol consumption #PTSD Not a big fan of Christmas which upsets me and others. Â -Â @AceZebraROI
Take The Mask Off WORDS: OLIVIA ARMSTRONG / KIERAN ROSE T ake the Mask Off is a campaign created in the
The name and origin of this magazine is also
summer of 2018 by activists Hannah
taken from the term masking, as a description
Molesworth and Kieran Rose. Through the use
of the mental gymnastics many autistic people
of the twitter hashtag #TakeTheMaskOff, the
experience to make sense of a neurotypical
purpose of the campaign is to encourage
society. The purpose of this magazine was to
education around autism coming from autistic
create a piece of media that does not cater to
individuals and to encourage those individuals
this and celebrates and prioritizes autistic
to express themselves in their struggles with
voices with no fear of judgement. Therefore, it
masking. As discussed on page 6, masking is a
goes without saying that Masking magazine is
term used by the autistic community to
hugely supportive of this movement.
describe the need to ‘mask’ their autism in order to survive in a neurotypical society.
The campaign was especially active during the
latter half of 2018, with many uses of the
store, while I'm on my way to the store, while
hashtag, articles, think-pieces and blog posts
I'm in the store, on my way back from the store.
explaining the psychological effects of masking and the toll it can take when an individual
Can you imagine how tiring that is?
masks for too long. Among the discussions were
Perhaps you can also see the potential
the breakdown of many negative mental health
problems with doing this. Have you ever spoken
issues that can come as a result of masking,
to a telesales person on the telephone and
including self-harm, burnout, depression and
asked them a question or said something which
suicide.
deviates from their script? It often sends them into a complete tailspin.
One of the articles written by campaign launcher Kieran Rose titled “We are not OK”
Now can you imagine carrying all the scripts
details the pressure and psychological burnout
inside your head for the scenario I just
that masking can cause both on a daily basis
described, going to the store and keeping them
and through extended periods of time. Below is
there?
an excellent except from the article available on Kieran Rose’s blog The Autistic Advocate
Okay, maybe that's feasible. But then imagine
regarding one of the many techniques autistic
you are walking there in the evening, it's getting
people use to mask:
dark, your night vision is terrible so you're concentrating really hard on where you are
“For me, personally, the most obvious form of
going; the car headlights are glaring by, causing
Masking is Scripting. For every conceivable
you to shield your eyes because you are
situation, I have a script. Many of them I keep in
oversensitive to them. You reach the store,
my head. Others though have to be created
avoiding the intimidating kids that stand
prior to events or engagements. Some of them
outside smoking and drinking while underage
(the horror!) have to be made on the fly.
and walk inside.
I'm going to give you a really random sentence now. Trust me, this will make sense later. Read
The colours are leeching off the shelves, the
it three times to yourself and then carry on
music is blaring because the shop keeper is
reading properly: ‘Bananas are blue, the sky is
bored, the freezers and fridges are humming
cheese and cats are mouldy like apples in the
and throbbing, everything has been moved,
stars’. On a walk to the local store I have my 'talk to the shopkeeper' script, I have my 'talk to my Dad's old next-door neighbour' script (I have to walk past his house), I have my ‘nod and say Hiya to people’ script for those who obviously recognise me but I have no clue who they are. It's by examining this that we start realising the difference between what autistic people do to what non-Autistic people do; because I rehearse these scripts. I rehearse them before I go to the
something you like has caught your eye and you're not sure if you have enough change for it, you have to debate with yourself whether to count your change to see if you can afford it or just get out of the shop as quickly as possible. You go for the fast exit and realise that as you have deliberated, ten elderly people have come in all wanting to do their lottery tickets, which is going to take ages and the basket which had only a few items in it now feels like it has lead weights in it and the handles are digging in to your hand. It hurts. So, you put it on the floor and try to shuffle it along, only now it's in the way of people trying to get past. So, you move it out of the way and now you're in the way, someone pushes past you and puts their hands on you and it takes every effort not to jump out of your skin, punch them and run screaming from the store. You hold everything in and keep shuffling forward in the queue, finally reaching the shopkeeper who now wants to talk about the slowness of elderly people, which really wasn't in any of your scripts. So, you kind of nod and laugh but it comes out as a kind of squeak as you realise now you are completely incapable of speaking. The shopkeeper looks at you as if you have three heads, only you can no longer see him because your vision has narrowed so much from anxiety. You hand him some sweaty coins that have been clutched in your clenched hands for what now seems like an eternity. The room spins, lights glaring and finally you can stagger out of the shop, shielding your eyes from the glare of car lights. You stagger home, going the long way around to avoid bumping into your Dad's old neighbour. You clatter through the front door, head pounding, chest tight, straight into your wife who asks if you got the one thing you went in for, which you blatantly have not. So that sends you into another mental tailspin, which you stuff down inside you.
Remember that sentence I asked you to read. What was it again? That ladies, gentleman and everyone else besides, is Masking.� More of Kieran’s writing and campaign work can be found on his online blog The Autistic Advocate. If you would like to support #TaketheMaskOff, you can do so through the use of the hashtag and the sharing of autistic writers articles and social media blogs.
Follow Kieran Rose on Twitter @KieranRose7.
Thank you for reading! Loved this issue? Then tweet @MaskingMagazine on Twitter, follow us on social media and send us some feedback! Special thanks to our contributors, interviewees and writers for participating in this issue!