ISSUE NO. 2
MASKING AN INSIDE LOOK ON THE AUTISM SPECTRUM
JUDGEMENT AT ROTENBURG
COMING OUT OF THE CLOSET?
IMAGES OF AUTISM – IT’S NOT SIMPLY WHITE
Investigation of the Judge Rotenburg Centre
A Personal Truth From Melissa Simmonds Âû
Autism is diverse so why don't we see that?
Special Thanks To: Kieran Rose Melissa Simmonds Âû Kate Gaster and Barbara, Paul and Jack Armstrong
Cover art and Editor Avatar by Sali255
editor's letter
I n all my wildest dreams, I could never have predicted the amazing response that the first issue of Masking would receive. It was an ambitious project – one that I had been working up to for the four years I spent at university. With this issue, I’d like to prove to myself and others that the first issue wasn’t just a lucky fluke. If the response is just as good or better than the first, I know I’m onto something that will last, especially with new writers and contributors to this issue instead of the first (which was basically a one-woman show with myself writing every feature). In this issue, I would like to place particular focus on both autistic people of colour and the concept of masking for autistic adults. As such, I have sought out interviewees and contributors who are far more qualified to discuss certain things than I am. The autistic community is so diverse and my ambition is to reflect that in the best way possible. In response to the last issue speaking about gender bias and images of autism in diagnosis, we have some wonderful female contributors recounting their personal experiences masking their autism and the stigma of being a woman on the spectrum in this issue. We also have a new advice guru, Kate Gaster! She’s been amazingly helpful in the production of this issue and has some great advice about sensory overload and the best ways to calm down after a meltdown. There’s lots of exciting new content and I’m very proud to have produced a second issue after so many lovely messages and such positive feedback. If you would like to leave some feedback or support for this issue, tweet your thoughts @MaskingMagazine! Best wishes,
Olivia Armstrong
contents 1 IMAGES OF AUTISM - IT'S NOT SIMPLY WHITE AND WHITE!
5 WHICH CHARACTERS DID YOU RELATE TO?
14 SENSORY PROCESSING WHAT IS IT?
18 PERSONAL ANECDOTE
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22
FIGS CAMPAIGN FIGHTING INEQUALITY FOR GIRLS ON THE SPECTRUMÂ
A CHAT WITH... KIERAN ROSE
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38
JUDGEMENT ATÂ ROTENBERG
WHAT DO WE THINK OF...? IMAGES OF AUTISM
29
40
FILM REVIEW LIFE, ANIMATED
GUEST WRITING CONTRIBUTIONS
32
48
COMING OUT OF THE CLOSET - A PERSONAL TRUTH
ART SUBMISSION
images of autism It's not simply white and white! WORDS: OLIVIA ARMSTRONG
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A utism is an intersectional gift by nature. Ever
"There’s not a lot of understanding in the black
since a name had been placed on the neurotype,
community and in black culture about autism at
there have never been any set of rules or
all. It’s usually a white male. They get told to stop
regulations dictating who could and couldn’t be
being stupid or weird,” she says.
autistic. However, when it comes to a specific image of what a neurotypical audience would
“I know for an autistic male, it would be very hard
assume an autistic person looks like, that
to come out in the black community. If you’ve
statement can feel almost redundant.
got a black autistic teen who wants their hood
up to get rid of sensory overload and who looks
This was discussed at length in our first issue, in
down at the floor when being questioned, they’re
which the notion of autism having a specific
going to immediately think he’s selling drugs.”
‘image’ in terms of gender was examined in relation to media portrayal. Despite the
It goes further than simply a lack of
prevalence of a large number of autistic women
representation, however. According to a 2017
throughout the years, the portrayal of autism in
study reported by Hannah Furfero for Spectrum
media is still considered predominantly male
News, white children are 19% more likely than
(despite some changes in recent years).
black children and a whopping 65% more likely than Hispanic children to receive an official
However, there is another huge branch to the
diagnosis of autism. The study cited a poor
oak tree of autism that is also massively
understanding in mental health and social
underrepresented in both media and discussion
stigma in many countries, to the point that many
and that is the existence and inclusion of autistic
children are left undiagnosed.
people of colour. Much in the same way that it can be argued that many subjects of autism in
As an example, according to a Spectrum News
the public eye tend to be male, that image also
piece by Virginia Hughes in 2011, some families in
extends to the dominating narratives of white
South Korea will go to great lengths to avoid a
autistic people. A large majority of autistic
diagnosis of autism, as it is seen as a mark of
characters in popular media such as The Good
shame upon the family. The stigma was to the
Doctor, Mozart and the Whale, Atypical, Skins
point that many Korean clinicians would
and many more are all white and finding non-
intentionally misdiagnose children with reactive
white examples of autistic characters is
detachment disorder – which is described as
significantly rarer.
social withdrawal resulting from parental neglect. This would create a scapegoat in the
According to activist Emma Dalmayne, this has a
form of the mother.
huge impact on the way autism in viewed in cultures that do not relate to white people, as it
Outside of the UK, Canada and the USA, it
is presumed autism is a ‘white’ condition and
cannot be ignored that many countries do not
non-white autistic people can suffer harshly from
have extensive understanding of autism and
this notion.
even in those countries, many communities are
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still unfamiliar. According to Emma, this
However, the issue of the lack of representation
understanding can only be achieved via more
doesn’t simply come from autistic people of
education and a willingness to hear the voices of
colour not seeing themselves on TV. As Kayla
autistic people of colour.
states, having a large amount of focus on the experiences of white people on the spectrum
“A friend and myself, we both did a talk show
can create harmful circumstances such as
called Great TV and it was targeted to African
people of colour having limited access to help
people. We spoke a lot about misconceptions
and healthcare and potentially even being
that are in the black community about autism
misdiagnosed.
and what can be done to promote acceptance, which is simply education. There needs to be a
According to a 2014 research article by Ruby M.
lot more education,” she says.
Gourdine and Carl L. Algood titled ‘Autism in the African-American Population’:
Disability Rights Activist Kayla Smith states that
“The limited care for children with autism is
she believes many of the misunderstandings
among a litany of health care concerns that
surrounding autistic people of colour come from
African Americans face. Further, when these
a held image of what autism is believed to look
medical issues are discovered, they are often
like, which is only further perpetuated by media.
diagnosed later and children may have more difficulty in adhering to treatment, resulting in
“There are so many negative stereotypes and
poorer outcomes. Another issue along with the
prejudiced toward minority groups that make
later diagnosis (approximately 1½ years or more
no sense to me,” she says. “For me, being an
than white children) or the incorrect diagnosis is
African American, I know the history how the
that children in African American families may
black community has been treated for the long
be diagnosed with behaviour problems and not
time. African Americans has been through
as autistic.”
slavery and Jim Crow Law, discrimination in voting, employment, you name it. I don't know
However, in spite of this, autistic people of
the experiences of Hispanics/Latinos, Asians, and
colour are rising to have their voices heard
Native Americans but I do know they experience
through the realm of social media. Kayla is
racism themselves too.
responsible for creating the hashtag #AutisticBlackPride and wants to encourage the
“It’s just sad that minority groups have to endure
voices of black and non-white autistic people to
so much ignorance and hatred in society. I
put their experiences first and express pride in
believe media plays a role of why there is no
their identities.
representation of autistic people of colour in movies, TV shows, etc. You always see white
“I created the hashtag #AutisticBlackPride to
autistic people on TV. I would love to see myself
celebrate and embrace black pride in the
on the TV for once. It just not fair at all that I
autistic community,” she says.
don't see autistic people of colour on TV.”
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“I hope autistic black people to see this hashtag and spread it on social media. I want them to know that they are not alone and there are community of us everywhere. I hope they feel better knowing that they are not alone this time. My goal is to celebrate our pride as being autistic and black. It is all about intersectionality! I hope other racial ethnicity groups do the same thing too to talk about their experiences and celebrate their pride. “We need our voices to be heard more, like including us in panels, podcasts, interviews, etc. Try to listen to us when we talk about our experiences. Autistic people of colour will have a different experience from their autistic white peers due to intersectionality. It is important to have different perspectives to the discussion. People of colour deserve to be heard now.”
You can follow Kayla on Twitter @BeingKaylaSmith and Emma @EDalmyne.
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Which Characters did you relate to? Who were your childhood icons growing up?
Editors Choice - Elle Woods (Legally Blonde) It was a real choice between Elle or Lilo from Lilo and Stitch but Elle Woods has always had such a place in my heart. She’s an eccentric, flighty girl who is often mistaken for being an airhead. But even from the beginning, it was clear she wasn’t lacking in blonde ambition. She accomplished everything that no one thought she could do, all while wearing pink and laying down the law.
Melissa Simmonds Âû The X-Men They were different, feared, hated and misunderstood. Now we have the brotherhood headed by Magneto. He owned who he is and didn't care who knew it. Charles Xavier headed the X-Men who were saviours to all. The entire story fascinates me.
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Elena Âû Chandler - Mowgli (The Jungle Book)/ Prince (Knyaz) Lev Nikolayevich Myshkin (The Idiot) Mowgli in The Jungle Book when I was little, because he lived with animals (who wants to live with humans!?) and because he was different but accepted as he was. When I was in high school, I read The Idiot by Dostoevsky, and it stayed with me. It was about a man who is clearly autistic and who has epilepsy, and he is honest to a fault and unable to read social manipulation. Everyone finds him charming in an infantalizing way - how refreshing and droll, someone who tells the truth. But even though he is naive, he cannot be used in social intrigue because he tells the truth and is guileless. In the end, they turn on him and cast him out. I feel I have been through this experience a lot, with people who find me "cute" or "naive", and who get very angry when I cannot be enlisted in whatever cabal is going on.
Luciane Hatadani - Konovalov When I was a teenager I read a short story by Anton Chekhov called Konovalov, who was a man who had deep existential questions but his mind wasn’t good enough to understand or answer them. I related to this character a lot. Then I watched a documentary about a baby elephant that was rejected by his mother. He tried to approach other elephants but he ended up being rejected by the entire herd. He tried to join
another herd and again he was pushed away. And then another, but it rejected him too. No one knew what was wrong with that baby elephant, only that no other elephant wanted him around. When I finished watching, I thought “I’m that baby elephant”. Because I just couldn’t feel accepted by anyone.
Janine Kharey - The Original Little Mermaid She reacts in kindness to rescue a prince because she can. She sees a world that looks like so much more than her own. She braves the scary witch and sacrifices her voice. Only to be not accepted in the world of the prince - and no way to communicate. She fails to win his love and is set to turn to foam at sunrise. Her sisters sell their hair so she can be saved if she kills the prince with a special dagger. Despite his rejection, she can’t kill him. She turns to foam. I could never turn on even those who rejected me. To me this was a tale of that virtue - not returning the behavior in an eye for an eye way. I wouldn’t save myself by harming others. As an adult I know why I identified with all of it. It was confusing to me why I was disappointed in the modern version, the one where she succeeds. I think it wasn’t just because I didn’t get my happy ending, but because she didn’t have the same moral dilemma; do I harm someone else to save myself?
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WORDS: MANDY LOUISE CHIVERS
FIGS CAMPAIGN Fighting Inequality for Girls on the Spectrum F IGS started in December 2017. We now have over 2000 members and a very clear mission: Acceptance, Diagnosis and Provision. We have a great mix with a diverse group of autistics, parents and professionals moving this campaign forward. The priority has been to raise awareness of our girls, as they are often missed due to the tools used to assess being male-centric. Girls are often mis-diagnosed with eating disorders, OCD, anxiety and other mental health issues. Depression, school phobia, attachment disorders and PTSD can all be co-morbidities due to insufficient support. Referrals are often rejected because GP’s and schools do not understand the different presentations, so our girls are refused access to diagnosis pathways. Many factors have been used to refuse diagnosis including eye contact, social ability and being perceived as being fine in school.
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If you are lucky enough to have a knowledgeable GP or supportive school, you might just get put on an assessment list. NICE guidelines state that if a diagnosis of autism is suspected, you should have an initial assessment no later than 3 months. Members across the country have reported delays of 2-3 years. If you manage to secure a diagnosis, you then have to navigate the educational pathways to find an appropriate educational setting when you already know your child’s current mainstream setting isn’t working. Mainstreams don’t work for a lot of neurotypical kids so neurodivergent children are left in trouble, with huge schools, large classes and multiple transitions each day. This is not great for children who can struggle with change and add to this a general lack of SEN knowledge among teachers as well as rigid behavior policies that don’t reflect neurodiversity and it’s just a perfect storm. Due to the inclusion policies put in place dating back to the late 1970’s, a lot of LEA specialist provision were closed down, as the policy to make schools accessible to all meant they had to be able to effectively support all the diversity and mainstream schools just couldn’t. Schools are struggling with huge budget cuts, being forced to test children as young as 7 to feed into league tables that increase pressure on the school and its pupils. Schools have gone from being nurturing environments that inspire and educate to a factory conveyor belt. I know many inspirational teachers who are desperate to support the pupils under their care but just haven’t got the budget or time to meet every child’s need in their class of 30+ children. Countries are currently spending hundreds of thousands transporting children across the country to specialist schools, usually using the cheapest contract which is often unsatisfactory. Children can be spending up to two hours a day travelling, many parents reluctantly look at the boarding route which breaks families apart. A lot of these schools can cost in access of £40000 a year. Parents are forced to fight county to tribunal level to get these provisions, currently local governments are spending in excess of £70m in tribunals, just imagine if the money spent on tribunals, private school and transport were invested in good LEA specialist provision and supporting mainstream schools who want to offer the support to their pupils. Let’s put an end to parents being pitted against countries fighting for a limited budget just to get their children a school that effectively meets their child’s needs.
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This is the current system we are desperate to change: 1. We want diagnosis tools available to all that pick up the multi presentations of Autism, so no child is missed due to not ticking a box. Yes, girls have eye contact but a good diagnostician would notice that its fleeting and superficial. 2. We want to see appropriate mental health support in places that are autism supportive. Currently across the country, autism is under the CAMHS umbrella, Autism isn’t a mental health condition, it’s a neurological difference and mental health difficulties aren’t a foregone conclusion. They occur when a child’s needs go unrecognised and unsupported. 3. We want NICE guidelines to be adhered to especially the line that states that a child can present differently in a different environment and if one setting reports different behavior's that person, usually a parent, is believed. 4. We absolutely don’t want ABA schools to be offered as the only solution, I don’t personally believe they are, I don’t believe children should be trained to be more palatable to the NT world, they should be free to be themselves. We would like there to be investment in LEA specialist schools so our children’s many talents can be nurtured and built upon. Our children are different not defective.
The group has grown beyond what I ever anticipated, which is a sadness because I had hoped my experiences were unusual. I now find, perversely, we have been lucky. Some of the accounts shared are truly harrowing and shouldn’t be occurring in a 21st century first-world country. Our girls deserve much more, the opportunity to flourish and grow holistically. Mental health crisis shouldn’t be an inevitable ‘co-morbidity’. We all know if our girls were given opportunities that nurture their strengths and supported the areas of difficulty, society as a whole would gain so much. Investment in supporting our girls is a financial no brainer. When well-supported, these girls can go onto academic success and beyond. Early recognition of their needs may prevent a life time of mental health difficulties and it will save the country money, instead of paying for a lifetime of mental health support. The current mental health statistics being released make for shocking reading and just show how much damage is being done within the current system.
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The last month has been particularly busy. FIGS visited Sarah Wild at Limpsfield Grange. What an inspirational head she was! Helen has been working like mad on Twitter and this has bore fruit as we have a meeting scheduled with the ATL/NEU union which will lead us nicely into our meeting in July with Tracy Brabin MP up at Westminster. FIGS attended the discussion around mental health back in April so we know our way around. We are writing to CCG’s and LEA’s. We have encouraged members to write to their MP highlighting the difficulties they are facing. We are encouraging parents to step out and not be afraid to stand up for their child. We have mapped our members and this has organically led to groups starting to set up across the country giving members regional support with other parents going through the same process.
Many thanks, The FIGS Team
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CHEWIGEM Chewing is a form of stimming; something we do to regulate our sensory processing system. It is very common for an autistic person to have sensory processing difficulties and have problems with their sensory processing system. This can cause difficulties planning movement and also cause the need to bite and chew. After a sensory overload we need to self-regulate and calm our sensory system. This is called stimming. There are many ways in which we can self-regulate including chewing and fidgeting. Many people will unknowingly chew something close to hand like their clothes, pens or hair. This will help them to calm their sensory system and feel safe and calm again. The sooner we self-regulate the easier it becomes and this can be helped by having something more suitable to hand. As a parent it can be extremely worrying seeing your child chewing something unsafe and worrying about them ingesting or swallowing something. Chewigem was created to offer a safe, stylish and discreet way of chewing and fidgeting. But Chewigem is more than just a sensory aid. Chewigem is the number one place for sensory support and advice. This is because they are more than just a product. Created by a mum of an autistic chewer who is also going through an autism diagnosis herself you are always guaranteed to speak to someone who understands. The Chewigem Community is an amazing place for sensory support and advice. With over 7 years of experience Lorraine and her team can help you find the best product for you. For more information on chewing and why we chew you can contact Chewigem via their Facebook Page https://www.facebook.com/chewigem/ Many thanks, The Chewigem team.Â
sensory processing disorder WORDS: KATE GASTER
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S ensory Processing refers to the manner in which the nervous system receives information
situations that impact the senses (which is basically everything that we do).
and turns it into a motor, behaviour responses. Sensory Processing Disorder happens when
I personally think SPD causes and drives
sensory signals are either not detected or the
anxiety. The sensory system has an impact on
signals don’t get organised into the correct
emotions and environments that can cause
responses. Ayres (PhD) says it like a
sensory difficulties will also cause anxiety,
neurological “traffic jam” that stops certain
causing the person to feel uncomfortable and
parts of the information being received.
overwhelmed. This can lead to sensory overload or a meltdown.
Some people will only have one sense affected (for example, touch), however multiple and all
What is Sensory Overload?
senses can be affected in one person and often are. SPD can make a person over or under
Sensory overload is when a crowded
respond to stimuli. For example, in a person
environment has mass media and the situation
who is over-responsive, the lightest touch on
becomes too much for the person to process,
their arm could cause extreme pain while an
This results in the sensory system being sent
under-responsive person will not feel the light
multiple messages and becoming completely
touch at all. As you can imagine, this can be
overloaded.
very difficult for an over-responsive person to manage on a daily basis.
The person might respond by; 1. Covering their eyes and ears
There are eight sensory systems. The first five
2. “Shutting down” or won’t
basic sensory systems that most people are
communicate/respond
aware of and understand. But there are three
3. Becomes over excited and can’t calm down
more that you may have not heard of:
4. Agitated, nervous 5. Crying, shouting, in clear distress
1. Visual 2. Auditory
This situation is out of the person’s control and
3. Smell
has nothing to do with behaviour. The sensory
4. Taste
system is not responding correctly and causing
5. Tactile
this reaction. Never force an autistic person or
6. Vestibular (sense of head space and
any person with sensory issues to stay in
movement, balance, orientation)
situation that has overloaded their sensory
7. Proprioceptive (sensations from muscles and
system: it is damaging and totally
joints of the body)
unacceptable. The person is in pain and must
8. Interoception (physiological, physical
be removed from the situation as soon as
conditions of the body, hunger,
possible.
heart rate ect.) Recovering from sensory overload is a very All eight sensory systems can be affected from
personal thing. My daughter, for instance,
SPD and this will have an impact on the
needs total silence in a dark room. Recovery
person’s ability to cope with environments in
time is also a personal thing.
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Give the person as much time as they need. When you interact with them or start any kind of interaction, that is when communication happens. Their sensory system will then be sent information and doing this too fast can lead to the onset of another sensory overload or meltdown. Â Â Sensory processing difficulties do not just go away one day! Autistic adults experience all of these difficulties. Please keep in mind anyone who has difficulties with their sensory system does not want to experience it. Above all, show some kindness and understanding.Â
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personal anecdote Words: Ruby Rhod This week's personal anecdote comes from contributor Ruby Rhod about her experiences with masking and diagnosis. There are mentions of drug use and violence throughout this feature. 18
2nd May 2018: I was one week away from thirty when a psychologist used the words, “Autistic Spectrum Disorder,” to describe me. I felt my lower lip quiver and I sucked it under my top teeth to disguise my emotions. “Okay,” I said, as if someone had asked me if I wanted chicken for tea. “We’ll book you in for a support session,” he declared. “I don’t need one, I’m fine,” I insisted. I thanked them and left. That night, I showed everyone that I was fine with two bottles of wine and a captive audience at a spoken word night. And I was fine, but I was pretending to be okay in a way that was different to how I actually was fine. Seven hours after being told I was autistic, I was drunk and cracking jokes as loudly and obnoxiously as possible. I wasn’t allowing myself time to process what I had been waiting nine months to finally hear. I wasn’t permitting myself to feel angry for the child I once was whose silence went unnoticed, sad for the girl who cried herself to sleep because she felt like an alien orbiting friendship circles or celebratory for the woman who felt brave enough to find out why she is the way she is. Instead, I was more interested in making sure everyone else could see how completely fine and ‘normal’ I was about it. Ironically, I couldn’t recognise that in my ‘celebration of the real me,’ I was still masking.
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I don’t know when my masking behaviours
I knew everyone called me morbid but I didn’t
began, but I do know my first mask was
care because I was denying them the chance
ascribed to me in the form of my autistic
to see me excited, happy and sad: the
siblings. There’s only thirteen months between
opportunity to see me vulnerable.
my younger brother and I so it makes sense that any delays I had in communication would
And whatever happened around me, from my
have been overshadowed by the needs of a
grandmother dying to my brother beating me,
new-born baby. As we grew, his needs always
my response was always that of indifference. I
outweighed mine. He was aggressive,
made it so I didn’t care and I didn’t care
controlling, noticeably fixated with his areas of
enough to say “No,” in many situations. Not
interests and incredibly domineering. Whereas
saying, “No” also impacted upon the number of
I was always described as a wide eyed little girl,
sexual partners I have had and if I had afforded
who happily sang rather than conversed.
myself the power to care, then I know my current bed notch count would be a lot lower.
By the time my younger sister was born when I
Yet, surprisingly and luckily, I have no regrets in
was six, it was evident I was existing in the
that department.
shadows of another’s autism. My forced indifference to life came to an end Those shadows only grew as we aged. My
the night I didn't care enough to say no to
siblings were different to me in that their needs
taking drugs for the first time. This is in no way
and difficulties in understanding the social
advocating the use of illicit substances, but
world were outward and when things went
rather a description of self-medication and
wrong for them, it was like explosions that
further masking.
impacted everything and everyone around them. Rather than explode, I harboured and
When a former friend insisted that I down a
ruminated all the difficulties I experienced. It
drink laced with M-Kat, I was determined that
used to feel like a colossal internalised howl,
she not know how terrified and uncomfortable
muffled with pillows down my windpipe into
I was with the situation. So, I drank it. The hours
my chest. There obviously were no pillows, just
that followed were an ordeal as the physical
a poe face and an indifferent tone to my voice.
effects of the drug were unpredictable and frightening.
The most damaging mask was the one I wore
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after I brainwashed myself into believing that I
However, something happened to me that
wasn’t entitled to my emotions. Myself and my
hadn’t in years: I was talking. I mean, the reality
peers recognised something different within
was the M-Kat made it so I couldn’t stop
me; something that I had decided made me
talking. But through the rapid and constant
less deserving of feeling anything other than
stream of speech, I was showing and
indifference. I spent years obsessively
articulating emotions. The drug inhibited my
regulating my emotions and controlling my
internal regulation and for the first time in
responses to what people said and did to me.
years, I was openly feeling.
After that night I started (with a bra full of narcotics) attending parties and making friends; friends who didn’t find me weird because we were all inebriated and equally odd. I masked with drugs until we all reached our late twenties and the years of partying took their physical toll. No longer under my siblings’ shadows, indifferent or under the influence of class As, I now mask with what can only be described as an exaggerated appearance of happiness and confidence. Nine months ago, the mask slipped and I recognised something I wasn’t entirely comfortable with: my autism. That’s when realised I needed to seek a diagnosis. Like my autism, my masks have been intermixable with who I am. I’m not sure where they end and the real me begins. Unlike my autism however, my masks have a finite amount of wear left and I am finally looking forward to getting to know and love the autistic woman hiding beneath.
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A Chat With... Kieran rose K ieran Rose is a campaigner for autistic
Thank you! So, first of all, when did you begin the
rights and the founder of the autistic
extent of your activism in the autism community?
cooperative, one of the largest facebook groups inviting the autism community to talk
KR: I’ve been a political activist for years, after I was
and discuss issues related to being on the
diagnosed at 23 there was no online community
spectrum, which he regularly writes about in
that I was aware of so was pretty much on my own
for his blog The Autistic Advocate. His writing,
with my diagnosis and living. After a massive
charity and activism work is extensive and I’m
burnout at 33, I discovered the Community and
thrilled to be able to chat with him about it.
realised that all the concepts I’d made sense of in
Thanks for being here, Kieran!
my head already existed in Neurodiversity, so I fell in to Advocating online quite easily and began
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KR: It’s lovely to be here Olivia, you’re fast
putting names to ideas, it’s all stemmed from there.
developing a wonderful magazine and it’s an
A year ago I met John Greally, we took opinions
honour to be in it.
from several other people and from there we
formed The Autistic Cooperative, an organisation that brings Activists and Autisticled Advocacy organisations together from all over the world. Did you face any problems or challenges? KR: In my personal Activism, the usual swathe of Anti-vaxxers, the Wright family (Autism Speaks), Cure-ists (I support Emma Dalmayne’s fight to get ‘Autism Cures’ criminalised) and the interesting rise of Neurorealists, alongside trying to find a way to communicate effectively with Parents of Autistic children. It’s always been so important to me to find a way to bring parents to our way of thinking in a way that recognises that they are also confused and vulnerable, just for different reasons. When my Daughter started school in With The Autistic Cooperative, negotiating 40
September 2017 I started writing and sharing
years of Autistic Activism, Autistic politics,
my life experiences, in the hope that I could
divisions and personality clashes has kept me
reach parents and professionals and help
on my toes, but I have pulled together an
them to see that there is another way; that we
amazing team who I couldn’t survive without.
shouldn’t be forced to change ourselves to
Together we’re manage to keep everything
meet their needs. I’m at the point now where I
running smoothly and are bearing witness to
pretty much have a reasonably thick book
Activists from all over the world connecting,
written and my writing has been read by over
learning and working together.
a quarter of a million people – so hopefully someone out there is taking notice and
What motivated you to start your blog?
reassessing how they treat us.
I have a diagnosed son and an (at the moment) undiagnosed daughter and I didn’t
Were you surprised at the sheer volume of
want them to ever have to go through what I
people in the autistic community who joined
did growing up and being an adult. I want
the autistic cooperative?
change – the world we live in is not set up for
KR: To be honest, it did take me by surprise. It
us, we’re forced to cower and conceal our true
has long been a dream of mine to connect
selves and that is wrong. I want to live in a
activists everywhere; it’s always made sense to
world where an Autistic person can live their
me that we need to collectively start learning
lives autistically, where we’re not bombarded
from each other and recognising that our
by sensory overload, or killed by Autistic
different strengths could support each other in
Burnout just because other people and society
educating and campaigning. But I didn’t
can’t accept who we are.
realise that everyone else needed it too and would take to it so well.
23
It’s been tried a couple of times before, but never has gotten as far or to the extent that we have gotten it. We’re effectively in new territory. To some degree it’s been like herding cats, but the way so many people have fallen in with the ethos of the group has been amazing to watch. We now have over 600 Activists and over 60 member organisations from every continent, including ASAN, Autistic UK, ASAN AUNZ and Âutistic ûnion (Âû). The work being produced and the crosslearning happening is, frankly, incredible to watch. I’ve made so many new amazing relationships too, with people I wouldn’t likely have had the chance to have ever met. Out of all the experiences you’ve had, what do you think are some of the most damaging misconceptions a neurotypical audience can have about autistic people?
24
KR: The perception that Autism is somehow something that can be overcome or is a set of behaviours that need changed. A lot of that is perpetuated by the Medical narrative we live under, the Negative Narrative as I call it. The language used creates a negative concept of Autism to wider society and parents, from the moment autism is diagnosed. Parents inherit this language and pass it on to us, the ‘haves’ and the ‘withs’ and the pathological terminology. The way that we’re spoken about and written about as though we aren’t there and able to understand for ourselves, when in fact the Autistic community’s describers of Autism are far beyond and far more nuanced of that of the diagnostic criteria of the ‘Professional’ world. We are used to inform them and they nod their heads and ignore us.
What do you think is the best way to encourage
care if people are aware of or understand autism.
neurodiverse voices in our media and political
I just want people to accept us for who we are,
climate?
listen to us if we ask for support, not be scared if
KR: We need more bloggers, more vloggers,
we wear sunglasses indoors, or ear defenders or
more speakers, more online debaters and a
don’t want to look at you. Acceptance means
shed-load more of our reality pumped out into
we wouldn’t have to mask anymore.
the ether. The more of us shouting and shouting
Our campaign will start on the last week of July
similar messages, the more we are heard. We
and covers the British six-week school holiday.
need to signal boost each other. We need to
We will be using the hashtag #TakeTheMaskOff.
work with journalists and reporters and
It’ll be six weeks of people Vlogging, Blogging,
producers, we need to make those contacts and
sharing articles, sharing their stories, interviews
we need to make ourselves indispensable and
and there are many great Activists and
relevant.
organisations already committed to being involved.
Right now I hear you’re pushing a big campaign for the awareness of masking in the autism
Can you tell us the most positive and negative
community (which is where this magazine gets
experiences you’ve had in your campaign for
its name)! Can you explain a bit about masking
autistic rights?
and why it deserves more awareness?
KR: The most positive experience I have is a
KR: Masking is when an autistic person pretends
repeated one, the lightbulb moment in a parent
to be non-autistic. Now to a degree every human
when they grasp what I’ve been saying and their
on the planet masks at times; they pretend to be
whole worldview spins and changes. For many of
someone they aren’t, they put on an act, or
them, it’s like they just needed permission to
pretend to cover up how they are feeling.
accept that the sum knowledge of Autism
Autistic people however take this a vast set of
Professionals can usually be held in a thimble
steps further - all day we 'pretend'. We might
and that they are surrounded with an entire
make eye contact, a bit of small-talk; we
Encyclopedia Galactica of knowledge in the
certainly don't stim or fidget. We contain
autistic adults around them.
ourselves and outwardly make it appear that we
The most negative thing is when I come across
are everyday people doing everyday things.
an Autistic person that can’t see the good in themselves. This makes me so upset. There are
Every time we are overwhelmed by sensory
Autistic people that seek cures, that can only see
issues we push it all down inside us, our
the inherited negativity and think they are
frustrations and triggers are pushed all down
broken and failed people. They genuinely can’t
inside us. We carry scripts in our heads for
see that they are wonderful, brilliant people who
conversations, rehearsing them prior. We
have been let down by society – let down by
pretend to engage when inwardly the
Professionals and Services that don’t understand
exhaustion is seeping through.The cycle of this
them.
goes on through our whole lives and now studies are starting to see the connection between
Once again, thank you so much for chatting with
masking and our incredibly high suicide rate.
me!
I fight for acceptance, not awareness. I don’t
KR: It has been an absolute pleasure, thank you.
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judgement at rotenberg WORDS:Â OLIVIA ARMSTRONG
Please note that this feature contains material that some readers may find distressing, including mention of behavioural shock therapy. 26
I n an age of increased criticism of Applied
(SIBIS), which wasn't strong at all, but they
Behavioural Analysis (ABA) from autism and
didn't reliably interrupt self-injury so Israel
disability rights groups (which features
experimented with a stronger and stronger
treatments that result in behavioural
shock, going through 4 generations of the
modification in its patients) the most
Graduated Electronic Decelerator (GED). The
extreme cases attract the harshest criticism.
organizational structure is group homes and
The Judge Rotenberg Center is a residential
a day program. There are locals who go only
facility that is currently located in Canton,
for the day but, as most people are from out
Massachusetts. The center’s purpose is the
of state, they are typically in the group
use of treatments and services to work with
homes. Israel was forced out in 2011, after
children and adults with social/emotional
destroying evidence of what was going on
disorders or developmental disabilities.
there.”
It was initially founded as the Behavioural
While the JRC had previously maintained
Research Institute in 1971 but the name was
since its inception that electric shock
later changed to the Judge Rotenberg
adhesives were only used in cases of violent
Center in 1994. Among many controversies
behaviour, a 2006 visitation programme
that have plagued the institute since its
report titled ‘Observations and Findings of
creation, one of the most infamous is that it
Out-of-State Program Visitation Judge
is currently the only behavioural institute in
Rotenberg Educational Center’ by the New
the US to use electric skin shocks as an
York State Education department published
adversive to what is considered negative
a list of findings that contradict this.
behaviour. This has induced extreme criticism from many disability,
The report states among its findings that
neurodiversity and human rights groups,
“JRC employs a general use of Level III
including the Autistic Self Advocacy
aversive behavioural interventions to
Network. It has been noted that a large
students with a broad range of disabilities,
majority of the center’s patients are on the
many without a clear history of self-injurious
autism spectrum.
behaviours. JRC employs a general use of Level III aversive behavioural interventions to
Disability Rights Activist Cal Montgomery
students for behaviours that are not
has had extensive experience with the
aggressive, health dangerous or destructive,
center and has long campaigned against its
such as nagging, swearing and failing to
practices.
maintain a neat appearance.
“It was founded in 1971 as the Behaviour Research Institute by Matthew Israel and
"Behavioural Intervention Plans (BIPs) are
was one of the leading disseminators of
developed to support the use of aversive
applied behaviour analysis,” he says. “It
behavioural interventions with limited
didn't start in Canton: it's moved once or
evidence of students ‘being faded’ from the
twice. The shocks began with the Self-
electric skin shock conditioning devices or
Injurious Behaviour Inhibiting System
other aversive interventions.”
27
These findings would forever cement JRC’s reputation as the most controversial facility in the United States, with infamous video footage released by journalist Anderson Cooper which aired on the Central News Network in 2011 showing an autistic patient who was restrained and shocked for a total of seven hours for hiding under a table after refusing the staff’s requests to remove his coat. According to Cal, these practices and the fact that they continue to this day only reinforces how both autistic people and people of other disorders and disabilities are viewed in terms of treatment. “We are both subhuman, which is a classical model of dehumanization as the reason for violence, and a phenomenon to be controlled,” he says. “This is a technology of control. There is a strong moralistic bent that people in certain ways need to learn that ‘they can't do that’, so that the punishment is appropriate. We like things dressed up as science and although the ‘science’ here is lousy, they have sold it well.”
"We like things dressed up as science and although the ‘science’ here is lousy, they have sold it well.” Cal’s work with disability rights activist group ADAPT has seen a long history of campaigning against the JFC’s practices, urging the United States Federal Agency to ban the use of shock adhesives via protests and speaking out against this treatment of those on the spectrum. “ADAPT went to the Rotenberg Centre in October 2016 and also has done some other work in both the spring and fall of 2017, he says. “I'm not sure when the vigil from March was committed to but there is really strong buy-in from across the nation on that one and an eagerness to continue the work. We don't always get strong support on developmental disability issues from physical disability leaders in this country but you really couldn't ask for a stronger or more committed team than ADAPT has fielded on this one and I am unbelievably proud to have been included. Moreover, they are taking care to centre the voices of autistic ADAPTers and to be in touch with ASAN, which I appreciate tremendously.” The use of the shocks and general treatment of the residents at the center have long been considered to be inhumane and unjust and many autistic activist groups such as ADAPT will not rest until their voices are held and the shocks have been stopped for good. You can support ADAPT and their work by following their Twitter @NationalADAPT and through the use of their hashtag #StopTheShock.
28
Olivia Armstrong
Film REVIEW L ife, Animated is a 2016 documentary film
life, animated While Owen’s parents do play a large part in
directed by Roger Ross Williams, based on
their interviews explaining his childhood and
the book by Ron Suskind. It tells the story of
how he first managed to communicate,
his son Owen Suskind, who was diagnosed on
Owen takes over as the narrator of his own
the spectrum at a young age. The film details
story as he tries to make sense of this new
his transition from childhood into adulthood
point in his life through the lens of the Disney
and how his methods of communication
movies he loves so much.
began with his fixated interest in the Disney movies he watches over and over.
Unfortunately, there is also an undercurrent of unintentional ableism and some
While the first third of the film focuses on the
uncomfortable statements made in regards
description of Owen’s childhood and his
to Owen’s development as a child. At some
process of diagnosis, the remainder focuses
points near the beginning, Owen’s parents
primarily on Owen and his struggles at
refer to what Owen used to be like “before
reaching a new point in his life in which he’ll
the onset of autism”, as if his autism suddenly
have to adjust to adulthood. This already
appeared one day. While it may feel that way
marks the film apart from many others, as
in a child’s development, it is not how autism
many documentaries centring on autism
works. Autism does not begin at a certain age
tend to focus primarily on the development
or from the point of diagnosis. There is no
of children or on their parent’s experiences in
point in an autistic person’s life in which they
raising them.
are not autistic.
29
At another point, they remark on their
from Aladdin. Through this method, the two
determination to “get inside this prison of
are able to have a full conversation about
autism and pull him out”. It’s more than
Owen’s feelings of loneliness.This is the
worthy of a raised eyebrow.
beginning of Owen’s speech and his family fully encourage his love of Disney. Owen’s
There’s also several odd moments that are
ability to quote the exact points and lines in
often attributed to Owen’s lack of
each Disney scene is known as echolalia.
understanding but don’t seem to ring true.
Echolalia involves the repetition of someone
For example, Owen’s brother tries to give him
else’s words and inflections, often with
the talk about sex and relationships at one
extreme accuracy. It is extremely common
point in the film and the fact that Owen has
among autistic people and yet rarely
trouble grasping it is implied to be due to his
discussed or acknowledged.
autism. But if he genuinely has never been taught sex education throughout all the years
Owen is graduating and will soon be moving
he has been in education, it speaks more
out of his parents’ house. Due to this change,
about the terrible state of US sex education
Owen experiences the world as he never has
that no one ever thought he would need to
before, dealing with relationships, heartbreak,
know these things. Owen claims he
job interviews and feelings of loneliness. This
understands “from movies” meaning that no
kind of change is hard on anyone but for
one ever took the time to explain the logistics
someone on the spectrum, it can feel like a
of a sexual relationship to him despite the
crushing weight.
fact he has had a girlfriend for three years. That has nothing to do with autism and has
However, Owen’s love of Disney and methods
everything to do with a lack of education: that
of communicating continue to help him
is no fault of Owen’s.
understand the ways of the world. He uses the narratives present in these movies to
However, it also worth pointing out that
connect with and understand his own life.
despite this, Owen’s parents and family also
When he suffers heartbreak for the first time,
show a level of care and consideration for him
he compares himself to Quasimodo from the
that is extremely refreshing to see in a
Hunchback of Notre Dame, who didn’t get
documentary about autism. For example,
the girl in the end but gained something far
Owen is nonverbal for the first few years of his
more important: acceptance from the people
life (his mother and father describe his
around him. He relates more to the sidekicks
speech up until that point as ‘gibberish’) until
like Jiminy Cricket, Iago and Rafiki rather than
he is quotes a line from Peter Pan in reference
the heroes, as they are fun-loving, wacky and
to his brother. Owen’s father realises that
help the heroes to fulfil their destiny. He
Owen has memorised all of his Disney movies
declares himself ‘the protector of the
and uses this to communicate with him with
sidekicks’, as a way of relating to people like
his puppet of the sidekick Iago
him who are often overlooked in favour of
30
who society declares are ‘the heroes’. The several animated segments in the film are beautiful and truly express Owen’s viewpoint of all the changes in his life. This does not negate some of the films unfortunate implications but it is important to realise this is primarily Owen’s story of moving into adulthood and dealing with the difficult emotions, stresses and change that come with this. This is a narrative that is rare among documentaries concerning autism and Owen is never talked over in his expression of his feelings. When he makes a speech at an autism conference in Paris, it is a truly heartwarming moment. For all the films faults, this moment is a complete full-circle and the epilogue shows him going about his life with the knowledge that there are times where he will fail and sometimes it can feel like the world is against him. But through his unique ways of communication and the support of the people around him, he will be able to come back stronger every time.
3/5
31
coming out of the closet A Personal Truth WORDS: Melissa Simmonds Âû
32
W hen do you come out to your family and friends? Perhaps I need to rewind a little to April 2016. I was given a diagnosis. I’m Autistic. At that time, I would have said that I “have” Autism but now I realise how offensive that is to my kind. I don’t have a disease or a virus. This isn’t a designer handbag and I can’t put it down and pick it up when the mood suits. Autism is as much of me as my blackness is. I’m a woman, too. I can’t pick that up and put it down (and I would happily be a man when it comes to the freedom. They get to pee outside if needs must, us poor women have to squat…it’s hellish and we often fail at it). So, I am black, I am a woman and I am autistic. I was diagnosed April 2016. but I was born autistic; autistic foetus, autistic baby, toddler, teen, you get the gist. Autism is as much of my DNA as my curvy hips and sense of humour. Anyway, back to the question. When do you come out to your family and friends? My mother, maternal Nannan (grandmother), aunts, a few cousins and one paternal cousin all know. I’ve told some friends, my kids and hubby (husband) and staff at my kids’ schools. But I feel like I'm living a lie. Is this what it feels like to be gay? To know you were gay from the womb but feel you can’t tell people? Do they ask you stupid questions when you come out of the closet like “really? But you don’t look gay?” or “what are the symptoms to being gay?” “are you sure?” “What causes it?” There is a stigma to being gay in the black community. I already knew it but Reggie Yates’ BBC documentary confirmed it. Homosexuality never bothered me, but I know that a lot of my family are against it…and I was just about to start writing about homophobia then I remembered this isn’t about that (damn you, autistic brain). This is about my question: When do you come out to your family and friends? The black community aren’t incredibly understanding about disabilities. Some in the religious communities would adopt the Religious/Moral Model and spout that it’s a punishment and your parents caused it for the wrongs they had done.
33
Or they would say that you are suffering now because you are going to inherit better in heaven. The less religious in the black community would still place blame on the parents, normally blaming the mother for screwing up during pregnancy (I understand that this isn’t just a black thing and there are prejudices towards disabled people in other cultures and ethnicities too), or they’ll ask the offensive question “did you vaccinate them?”. Yep, there is a lot of prejudice towards disabilities. But invisible neurodisabilities? Don’t even get me started! Autism and ADHD in the black community is a big struggle. I get angry every time I see those damn videos on social media of the “disrespectful” little black child being rude to their parents, the caption always reads “What would you do with this child?”. There are always scores of comments saying “beat him” or “I’d kill my child before I’d let them act this way”.
"This therapeutic purge has helped me see why I have lived in the autistic closet. The autistic label helped me to connect the dots; the struggles I endured throughout my 30 odd years of life; feeling odd and like an alien in my own family. My aspirations and desires felt so foreign compared to my cousins. I always felt like I was on the outside looking in." I always think “perhaps the child is autistic? Perhaps that child is struggling with the environment they are in, lights, sounds, textures; perhaps the parent and child don’t realise how much sensory stimuli is adversely affecting the child’s behaviour?” The child can’t verbalise it and in having meltdowns, they literally explode. But the black community are still hell bent on disciplining the child without asking the simple questions “what is the matter?” and “how can I help?”. The black community care about appearance too much and don’t want to be judged by their peers. Sod appearances. That’s what I want the black community to say. My child’s wellbeing is more important than you spouting about how your child would never act like that. Back to the question: When do you come out to your family and friends? This therapeutic purge has helped me see why I have lived in the autistic closet. The autistic label helped me to connect the dots; the struggles I endured throughout my 30 odd years of life; feeling odd and like an alien in my own family. My aspirations and desires felt so foreign compared to my cousins. I always felt like I was on the outside looking in. At school I excelled, but I just couldn’t apply myself. My inability to organise meant I never hit deadlines and needed extensions for every assignment I’ve ever done. I’ve always needed help but don’t know how to ask for it.
34
I have to go around the supermarket in a certain order; once I went and they had moved the products to different aisles. I was so distressed that even thinking about it now gives me the same feelings I experienced on that day. Phones and communication overwhelm me. People are often irritated by my lack of responses to their requests. I rarely answer my mobile because conversations drain my energy. I’ve let people I love down, promised to do things and then not seen it through. I'm not lazy. I get overwhelmed and my brain shuts down. Group chats and emails confuse me. I can’t even explain it because I still don’t fully understand it. I have over 9000 emails that I haven’t read, I have 5 different email addresses to help with my organisation, but it didn’t work. I have text messages I’ve not read, messages I’ve not listened to…I am so behind with responding to things that I could write a book about it. It used to take me a week to read a book, now I can’t read a sentence without having to reread it again and again and again to understand what it means. I wish my brain was a filling cabinet. Alas, it is not. This black, autistic brain is a dustbin and every bit of information I get is put in it. Nothing is ever discarded even though I know people (especially work colleagues) who may think that. Imagine a disordered overflowing bin, and each day more is stuffed into it. How do I prioritise my thoughts? How do I plan my day? Yes, I definitely wish my brain was a filling cabinet. The labels helped to connect the dots. But my issues could also be applied to any culture and colour. But my issues could also be applied to any culture and colour. However, nothing is more sacred to a black woman as her hair is. It’s her crowning glory and we diligently ensure our hair is immaculate. My family is full of hair dressers. Their styles are beautiful works of art and their hair is their crowning glory.
35
But not mine. I'm able to admit my sensory issues now. I absolutely hate getting my hair done. It hurts. I have migraines leading up to it because of nerves and then have migraines up to a week afterwards because it feels like someone has been stamping on my head with high heels on. My sister and mum tell me off all the time because a hairstyle that should last one month is still on my head 4 months later. I know it looks awful, like there is a dead animal on my head, but the thought of going to the hairdressers to get it redone? No thanks, I’ll keep the dead look. But I guess this is my coming out of a closet letter to you all. I'm sat in the hairdressers writing this, asking myself “how can you expect people to accept autism when you can’t even be honest about who you are?” I was never vaccinated. They didn’t exist when I was born. So, to the antivaxxers out there, vaccinations don’t cause autism. But not vaccinating your kids causes outbreaks of TB, measles, mumps and rubella. These illnesses could be eradicated but parents don’t want their kids to “get” autism, so they cross their fingers and hope for the best. This argument is moot because I know lots of autistics who are parents, people in their 30’s, 40’s and 50’s who were born before MMR vaccinations and they’ve still “got” autism.
36
So, I'm black and I'm autistic and the reason I didn’t receive a diagnosis earlier was because many women don’t. We have the ability to mask our autism. We are social chameleons, learning from observation and adapting our behaviours to appear ‘normal’. I have acted neurotypical since I could walk and talk. It’s hard pretending to be somebody or something I am not. It’s exhausting. I am always putting on a show and I’m in character until I place my head on the pillow at bedtime; then I can’t sleep because my neurodiverse brain is like a computer that must replay every sight, sound, temperature and texture I have been in contact with since I woke up. My brain relives it, processes it, downloads it and then I can fall asleep. I called it insomnia, but it’s sensory overload. I take 4 types of medication each day to function because the neurological pain I experience is horrific. Think of an ice pick stabbing you at the back of your eyes. Imagining waking up with a migraine and being paralysed in your sleep by it. Now imagine getting up, brushing yourself off and putting on a show for the world. Oh, the joy of pretending to be somebody and something you are not. My pretending for 30 odd years has caused Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) because my autistic brain and body is in conflict with itself. To the black community: your judgement of things you don’t understanding is crippling our progress and we need to move forward. We need to stop chastising our kids and talking to them. We need to start perusing diagnoses for our kids instead of saying there is nothing wrong. I see black autistic children and adults every day but you don’t know it. You’re not ready to hear that you or your child are just like me, so I keep my mouth shut and carry on living in my autistic closet while leaving you in yours. We could be allies. We could be helping each other; holding hands and walking this scary, unknown enlightening path together. Black Autistic communities in this journey together. But I'm exhausted and so I am coming out. Perhaps I am wrong and you won’t make hurtful comments to me. Perhaps you won’t dismiss it and think I'm faking it. Perhaps you will say to me,“Melissa, I really don’t understand what Autism is, but I love you, so I want to understand, will you help me?” Either way, I am Autistic, Mutant and Proud!
37
What do we think of... Images of Autism?
38
Following on from our previous feature, this 'What Do We Think Of...?' segment focuses on media images of autism and what we'd like to see in the future. Have something to say? Then tweet @MaskingMagazine!
"The stereotype that autism only occurs in white boys who are either super intelligent or have a learning difficulty. They are always white adult females and males who have a learning difficulty, or white adult males who are super-intelligent man-children." - Kieran Rose "In a way, I am just glad to see some visibility. I know it's still usually the straight white male, but it's a start. In another way, I think there are a lot of characters on screen that show more diversity and have autistic traits but aren't stated as being autistic. I'd like to see a greater variety in every sense, not just when it comes to autism. You rarely see any pagan religions, just monotheism. You rarely see non- crazy bisexuals or convincing trans people or non-binary. I'd like to see more real disabled people play real parts, too."- Debra McVay "It's improving, gradually. The recent "Are you Autistic" doc on Ch4 was excellent - great to see more female representation. But the media are still very quick to point out if a terrorist happens to be autistic. Most of us wouldn't hurt a flea." - Madge Woollard "I want to see people of my age, gender and socio-economic group. I am a 56-year-old unemployed woman. Very rare to see any image of any autistic except the usual small white boy. Even in autism groups, the dominant age group is people who are teens to early 30s. Also, women of my age who are childless. If women my age get mentioned, it's usually, "Her son was diagnosed and she realised... " Basically we are the "difficult women", the middle aged and elderly recluses and cat ladies and eccentrics. We need to be part of the picture." -Â Pamela Margaret Murphy-Mason 39
Guest Writing Contributions The following features have all been contributed by talented autistic writers in response to the last issue, in which they detail their personal experiences, emotions and relationship to their autistic identity. I’m both thrilled and humbled that they would choose to confide these very personal and emotional struggles in this issue of Masking. Masking welcomes contributions and aims to support and encourage autistic talent. Many thanks to all writers featured. Enjoy! - EditorÂ
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life on the spectrum How I Learned to Love my Autism WORDS: MORGAN MARIE CONNELLY
T here comes a time when you find out that Santa Claus isn’t real, and that it’s just your parents slipping gifts under the tree and taking bites out of the cookies. That, for me, was exactly what it felt like when I found out I had Autism when I was ten years old. Don’t get me wrong, I’m thankful my mom educated me about Autism earlyon and I was diagnosed when I was four. I’ve also gotten plenty of educational help, thanks to my mom’s initiative to get me on an Individual Education Program (IEP) plan. I just wasn’t prepared for what I was going to experience in my life following my realization.
41
I’ve discovered over countless Google searches that Autism is a “developmental disorder” that is usually divided into two sections: severe and high-functioning. Severely Autistic children may not appear different but may make odd gestures. High-functioning Autism doesn’t tend to affect physical appearance but tend to have social and behavioural problems. And believe me, I’ve had plenty of them. Speech therapy was there for all of my elementary years, helping me slowly develop the skills that were needed to be somewhat “normal” ─ that is, somewhat like the other students at
school who didn’t have Autism. I learned how to take part in a conversation, learned how to lose at a board game, and learned what it was like to function normally. But my beloved speech therapist wasn’t there to help me out with the typical middle school bullying, the anxiety that overcame me in high school, and the thousands of socially awkward situations in between. “It’s a learning experience” sounds refreshing when it comes from your dad teaching you how to fix the car, not when you’ve literally told a stranger everything about yourself for the seventh time in the last year. So, when a friend looking to figure out how her Autism works asked how I coped I didn’t know what to say. I don’t “cope” in the conventional sense. Every week is a learning experience, with some lessons being vital and others being nonessential. I’m way too loud, and I don’t know when to shut up. I don’t understand boundaries. I’ll hug for the sake of hugging people, because I’m a giant hugger. (I apologize right now to everybody who had to be hugged unwillingly. All 5,000 of you. You know who you are.)
42
"'It’s a learning experience'sounds refreshing when it comes from your dad teaching you how to fix the car, not when you’ve literally told a stranger everything about yourself for the seventh time in the last year."
But more than my mistakes, I’ve had support. Support from family and friends who not only tolerate me but love me. Support from the people who’ve admired my work and keep on encouraging me to do what I love. Support from the teachers and experts at school who cared for me along the way by helping me to grow up and be strong. Even though Autism has been a hell of an experience to overcome, I would never wish for a different lifestyle. Autism is just as much a part of me as the glasses I wear for my astigmatism, or the braces that correct my teeth. And unlike the glasses and braces I wish I didn’t have, I’ve embraced my Autism despite all the embarrassing memories I recall. I remind myself every day that, yes, I have Autism, and yes, I’m going to be alright. April marks Autism Awareness Month and April 2 was International Autism Awareness Day. While you may not know anyone personally with the disorder, you probably know quite a few famous people with it: Albert Einstein, Mozart, Tim Burton, Andy Warhol, Dan Aykroyd, to mention a few. I will never know what normalcy looks like, and that’s the point. But more than that, I just feel like we ought to do a better job of properly educating people, myself included, on what it’s like to have disorders, disabilities, or differences. Or, as one person put it, “Be kind. it’s hard to be a person.”
This contribution was given by Morgan Marie Connelly, an award winning writer hailing from Oregon, USA. This particular piece won her second place in a statewide college level journalism award.
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living with autism as an adult WORDS: J.G
I 'm a 49-year-old woman, married with an 11-year-old son. I'm funny and talented and extremely creative. I have a rewarding career in the non-profit world. I'm also autistic. Autism is a difficult concept to grasp unless you're living with it or dealing with someone close to you who has it. Most people are quite uncertain about what it actually is; they just know that it's something really, really bad. That's because autism is a very wide spectrum, and it's nearly impossible to paint an accurate picture with just a short definition or sound byte. So, I'd like to paint a picture of what autism looks like for me.
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I've always been "different." Quirky. Odd.
To button my shirt, I have to close my
When I was a baby, I crawled backwards.
eyes to block out visual stimuli so I can
I'm hyperlexic; I started reading at age 2
focus on directing my movements. As
(yes, really). Before I was diagnosed, I
you might imagine, I spend a lot of time
used to say that I felt like I was 'born
looking like a scared chihuahua.
without skin.' You know if you hurt
Shaking. Panicky. Awkward. The hardest
yourself and abrade away the outermost
part is that certain people seem wired to
layer of your skin, suddenly even the
zero in on my exact kinds of
tiniest touch is excruciating? That wound
vulnerabilities and relish exploiting
might not look like much to others, but
them. Those are the people who make
it sure hurts like hell. That's what autism
having autism really, really hard.
is like for me. Unfortunately, my own mother was one Everything about me is like that abraded
of those people. Fortunately, I found a
patch of skin. If you can imagine the
husband who is the total opposite of
outside of your entire body, every inch,
that. He's amazing, patient, kind, funny
lacking that protective outer layer of
and so accepting of my quirks. And he
skin, perhaps you can imagine the level
helps me heal more every day.
of anxiety that would create, all the time.
Don’t buy the idea that autistic people
Â
cannot empathise. If anything, I'm far too
A lot of people think of 'high-
empathetic. I cry at phone commercials.
functioning' autism as primarily an
For me at least, it's a ridiculous excess of
impairment of social skills. (By the way,
empathy, which created in me a lifelong
'high-functioning' is a term I hate for
desire to help those in need and seek
many reasons but I'm using it here
social justice (this is where the non-profit
because it may help you understand.)
thing comes in).
Yes, I'm quite socially awkward. But my social impairment is minor compared to
So, what one request do I make? I don't
my sensory challenges.
need or expect others to really understand autism. The only thing I ask
I'm The Princess and the Pea, come to
is that you be understanding of others'
life. I'm exquisitely sensitive. I have
challenges and quirks. Allow everyone
supersonic hearing. I wear noise-
their essential humanity and treat
cancelling headphones all day at work,
everyone with dignity, even though they
usually blasting white noise to drown
may be very different from what you're
out distracting sounds around me so I
used to.
can focus. I have a hair-trigger startle reflex. If the restaurant menu has too
That one simple thing? It makes all the
many choices, I have a really hard time
difference in the world.
focusing on any of them.Â
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An Island In The Stream WORDS: Amyr Johnson A warm feeling of the sun on your skin, salty air, barefoot, coconut tress swaying. I saw the bright hues of the ‘flame tree’, hibiscus and bougainvillea and the taste of the renewed abundance of mangoes and pineapples. My home. The Caribbean. On a Summer Solstice. Strange isn’t it? The sight of a memory, the scent of the touch. But what I remember is that feeling of freedom. She told me, you know, so gently that I had obvious signs of autism and even now, the mask that I had knowingly put up for protection was starting to crumble. I was diagnosed with autism at the age of nineteen while in college on June 20th 2012. I know by coming out as autistic, it would not only isolate me from everyone but I would live in a society where I would be ostracized and just be labelled a ‘crazy stereotype. It would more than likely be a huge disadvantage in providing income for myself. As a black woman, I already have the odds stacked up against me. I can’t risk it. Not as yet. According to Te Reo Hāpai (The Language of Enrichment), the development of translation for word and concepts such as ‘takiwatanga’ substitute for ‘autism’, which means ‘in his/her own time and space’. A non-judgmental representation that is based on the strength and ability of people. I identify with this description wholeheartedly. With my diagnosis, I have learned to accept it and every year on a Summer’s Solstice, I hold a quiet celebration alone for the discovery that showed me to myself. 47
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Art Submission!
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Credit Details Artist: Victoria G.C. Jackman Website:http://anniemanga.com/ Twitter: https://twitter.com/VGCJackman DeviantArt: https://anniemanga.deviantart.com/
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