ISSUE NO. 1
MASKING AN INSIDE LOOK ON THE AUTISM SPECTRUM
FUNCTIONING LABELS
A LOOK BACK ON THE RAIN MAN
UNDERSTANDING THE WAKEFIELD STUDY
High or Low - what is the purpose?
Awkward viewing or wellmeaning for its time?
A study in fraud and fear tactics
Special Thanks To: Margaret Hughes Sarah-Lea Critchfield Louise Beattie Gayle McNicol
and Barbara, Paul and Jack Armstrong
Cover art by Renniks Arts
editor's letter
W elcome to the very first issue of Masking! This has been a long-coming passion project and I’m so thrilled to have self-produced this work. Even before my diagnosis, autism has always been a huge part of my family life and I’m so fortunate to be in the position as a journalist where I can share that support. My goal with this project is to open up the autistic community and to talk about all the unique experiences we share. As a community, there are so many topics, fun observations and complex issues to talk about! So that is what I’ve represented here; a magazine written by and for autistic people to relate to and feel safe with. It’s not always easy out there in the world and it is important for us to embrace what makes us special and disconnect from the noise of the outside world for the time being. Our voices deserve to dominate the conversation. But, there’s also plenty of time to educate! There are many people who maybe want to understand their diagnosis. Or they may have a relative or know someone who is autistic and have limited understanding of what issues they can face. Education is the key to understanding. So, I guess you could say that is the two key things I wish to accomplish with this issue; relate and educate! I can’t thank enough every person who came together to help me on this project. Without you all, this wouldn’t have even gotten off the ground. I hope you enjoy the first issue and hopefully we’ll meet again for issue #2! If you would like to leave some feedback or support for this issue, tweet your thoughts @MaskingMagazine!
Olivia Armstrong
contents 1 THE GENDER DYNAMIC - IS THERE REALLY GENDER BIAS IN DIAGNOSIS?
5 A LOOK BACK ON THE RAIN MAN
8 SOME OF OUR MOST INFLUENTIAL AUTISTIC ICONS
11 UNDERSTANDING THE WAKEFIELD STUDY
15 FUNCTIONING LABELS IT'S NOT AS SIMPLE AS HIGH OR LOW
19 A CHAT WITH... CHRISTA HOLMANS
21
31
PERSONAL ANECDOTE
GUERILLA AND STEALTH ASPIES STAGE SHOW
25
37
THE PARENT PARADOX
YOU DON'T LOOK...
29
41
FILM REVIEWMARY AND MAX
QUEER AND AUTISTIC?
The Gender Dynamic Is there really a gender bias when it comes to Diagnosis? WORDS: OLIVIA ARMSTRONG
1
O ne of the biggest points of discussion
A consequence of this referral bias is that not
concerning autism has always been with the
only are more boys referred, clinicians and
topic of gender. The subject alone opens several
academics can have a false impression of the
dozen questions and debates: Are there more
incidence of aggression in this population.”
autistic men than women? Are men simply diagnosed more? Do women present symptoms
Arguably the biggest proposal cited by many
that are harder to see? Is autism really a male
case studies is the notion of autism diagnosis
condition? And more importantly, why would we
following a ‘male model’, as formed by Austrian
think that?
paediatrician Hans Asperger in 1944. He studied and identified patterns of behaviour in young
A case study by Lee A. Wilkenson, titled The
male subjects and this led to the first definition
Gender Gap in Asperger Syndrome: Where Are
of Aspergers syndrome after his name. His
the Girls? (published in 2008), examined many
findings found that the subjects, among other
explanations often cited as the reason for the
symptoms, had hard times forming friendships,
supposed gender divide. For example, the
conversations that were often one-sided,
proposal that females socialise differently and as
intense interest in one or more specific areas
such, their autistic traits may not manifest the
(later called special interests) and clumsy
same way as their male peers.
movements.
Professor Tony Attwood’s 1999 publication The
While there is no denying the ground-breaking
Pattern of Abilities and Development of Girls
nature of his work in 1944, a common criticism
with Asperger's Syndrome expanded on this idea
of his study arises when his conditions for
even earlier and proposed, among many other
diagnosis only featured male subjects and
theories, that “We have a stereotype of typical
largely followed male patterns of behaviour,
female and male behaviour. Girls are more able
with women having much less attention.
to verbalise their emotions and less likely to use physically aggressive acts in response to negative
But is there any true evidence of bias in
emotions such as confusion, frustration and
diagnosis? Or is it all just speculation?
anger. According to Alycia Halladay, Chief Science “We do not know whether this is a cultural or
Officer from the Autism Science Foundation:
constitutional characteristic but we recognise
“There has been a consistent sex bias in the
that children who are aggressive are more likely
diagnosis of autism. Males are four times more
to be referred for a diagnostic assessment to
likely to be diagnosed compared to females.
determine whether the behaviour is due to a
One theory is that females are in some way
specific developmental disorder and for advice
protected against a diagnosis. Another is that
on behaviour management. Hence boys with
the diagnosis itself is biased towards males, in
Asperger’s Syndrome are more often referred to
that the diagnostic tools were set up around
a psychologists or psychiatrist because their
boys with autism. Another is that females have
aggression has become a concern for their
higher social skills and fewer repetitive
parents or schoolteacher.
behaviours than males, allowing them to compensate, camouflage or just mask symptoms.”
2
Amalena Caldwell is an autistic freelance editor living in South Florida. She graduated Florida Atlantic University with a bachelor's degree in English and is currently pursuing her talents to become a published YA (young adult) fantasy author. She explained that she believes her diagnosis later in life was definitely influenced by the perception that she couldn’t have autism because she was female, despite her clearly showing signs from an early age. “It took 19 years for someone to suggest that I might be on the spectrum, after years of therapy and obvious symptoms, such as meltdowns, growing up,” she says. “These were labelled tantrums, and I was considered to have anger management problems. Girls are socialised differently, so if you’ve got a social disability and are being judged against criteria set up for a group of people who are trained from birth to socialise differently from you, there’s going to be a difference and people won’t pick up on it. You don’t fit their mould. “There’s theories out there that being autistic means I have a male brain. I don’t see how
"Girls are socialised differently, so if you’ve got a social disability and are being judged against criteria set up for a group of people who are trained from birth to socialise differently from you, there’s going to be a difference and people won’t pick up on it.
that’s possible, since I feel female and am very happy as a female. It feels kind of dismissive of my identity as a female to say that I must be male in some way to have the neurology I do.
"You don’t fit their mould."
For a while I was told I was possibly bipolar. This didn’t stick because I didn’t get the right sort of mood swings but suffice to say it took a while and several bad theories before realising that ASD fit me perfectly and explained everything.” Amalena’s sentiment of autism following a male model for diagnosis is echoed by professional writer and owner of the blog Autistic, Not Weird; Chris Bonello. Chris is a former primary school teacher and was diagnosed at the age of four.
3
Check out more of Amalena's work at https://somegirlwithabraid.wordpress.com/
He has since gone on to win the Top Journalism Award at the Autism Heroes Award 2017. The Autism Heroes awards were created by the Anna Kennedy Online Charity as a chance to showcase excellence in the autism community. “I think the problem is worse than people simply thinking autistic women act like autistic men,” he says. “I have had followers asking me for help because they’ve been, in their words, laughed out of the GP’s office when asking for a diagnosis referral- because their doctors truly believed that autism doesn’t affect women. “There must be a plethora of women and girls whose only reason for having no diagnosis is that they didn’t act enough like boys. And it’s bad enough having a diagnostic criterion with a male bias without the fictional world backing it up: other than a character in the video game Overwatch, I can’t think of any females in the recent surge of autistic characters in the media.” Autism comes in many different forms through different people and doesn’t discriminate, through race, gender and sexuality. But if girls really do present with different symptoms, the current diagnosis criteria should reflect that and more needs to be done to look into how autism can manifest in girls and women. Perhaps then, we may see that 4:1 ratio begin to close and more possibilities open to girls growing up and getting the help they deserve.
4
WORDS: OLIVIA ARMSTRONG
a look back on "rain man" R ain Man is a 1988 film starring Dustin Hoffman
The film earned praise and acclaim for its
and Tom Cruise which stands out as being one of
insight into the autism spectrum, which not
the first and most iconic portrayals of autism in
many mainstream audiences were familiar with
modern media. It follows a man named Charlie
at the time of release and it remains one of the
Babbitt (played by Cruise) and his brother
most iconic portrayals of autism in pop culture.
Raymond (played by Hoffman), who has been diagnosed on the spectrum as the two meet and
In recent years however, the film has attracted
begin to learn about each other through the
some criticism from the autistic community for
course of the film.
Hoffman’s portrayal of ASD, as being the most popular film portrayal of an autistic character
5
The film was loosely based on the life of Kim
began to present itself as a double-edged sword
Peek, a real-life savant who suffered from FG
in terms of representation. In particular, the
syndrome, not autism. It was the highest grossing
criticism seems specific to the symptoms
film of the year and earned Dustin Hoffman the
presented in Raymond’s character; particularly
Oscar for Best Actor the following year.
in his portrayal as the “idiot savant”.
A savant is defined as an distinguished and
Anders Nordahl-Hansen, postdoc and autism
learned intellectual but an idiot savant has been
researcher from the University of Oslo, states that
defined in pop culture as a character with a mental disability who is extremely gifted in a specific area. In one of the most famous scenes in the film, Charlie and Raymond travel to Las Vegas after Charlie discovers Raymond has perfect memory recall and uses this to his advantage to win money. This scene served to cement the notion to many that autistic people feature an almost supernatural skill with fields usually associated with mathematics or memory. Despite this, Raymond is also shown to be
the historical importance of the film to autistic portrayal in film cannot be overstated but the focus on savantism can become misrepresentative of the autistic community. This criticism levied at the film primarily focuses on Raymond’s savant-like abilities, stating them as not only highly unrealistic but also creating wrongful expectations of autistic people in reality. Contrary to the film portrayal, savant abilities in autistic people are rare and do not reach the levels portrayed in the film. “Savantism is tightly connected to autism, although one does not need to have autism to have savant
extremely socially stunted and having many
skills of course. Many claim that 1 in 10 people with
sensory difficulties in his life, hence the role of
ASD have some kind of savant skill but other
the idiot savant.
estimates (e.g. Howlin and Rutter et al., 2009) prevalence of savant skills to be around 28%.
6
"It is important to note that the film came out in the late 80's and that the defining criteria for autism was much narrower than it is today. The film did put autism on the map, so much more than any other film, but it also lead many to believe that for instance savantism is found in most persons with autism."
This is actually a lot compared to other
In part this also relates to a bias as Hollywood-
populations, but still means that statistically
films and TV-shows reach out too many more
over 7 out of 10 people on the spectrum do not
people than European, Canadian, Asian and
have savant skills,” Hansen states.
Australian films on the subject,” he concluded.
“As noted in “Pros and cons of character
Hansen’s most recent research can be found
portrayals of Autism on TV and Film” Rain Man
in the publication “Movie and TV Depictions of
has been a very influential (historically the most
Autism Spectrum Disorder”, which explains
influential) portrayal of a character with
further the impact of both The Rain Man and
Autism. It is important to note that the film
other forms of representation that have
came out in the late 80s and that the defining
formed the public consensus of ASD.
criteria for autism was much narrower than it is today. The film did put autism on the map, so
It's easy to decry Rain Man, as it was made at a
much more than any other film, but it also lead
time when understanding of autism was
many to believe that for instance savantism is
limited and as a result, features many aspects
found in most persons with autism.
of autism which would be seen today as unrealistic or stereotypical. However, it was
“This is not the movie-makers or Dustin
also a necessary step in bringing autism to the
Hoffman’s fault of course, but a consequence of
public consciousness. It is perhaps better to
people knowing too little about autism. But if
see it as a well-meaning but rather clumsy
most films with autistic characters have savant
product of its time.
skills then it becomes a mis-representation at a group-level and that would be worse. In fact,
This does not negate the criticisms levied
there are more films with autistic characters
against the film and many aspects of it are
not having savant skills. So, seen as a whole,
dated and even uncomfortable. Every autistic
savantism in film is not necessarily that much
person is different and there is no such thing
over-represented as many believe.”
as a perfect portrayal. But as many more complex portrayals of autism begin to show in
7
"Rain Man and other popular shows on TV, as I
more recent media, it exists to show that there
earlier mentioned, may over-shadow other
is no one way to be autistic and served as an
films with autism available.
important, if awkward, first step.
Some of Our Most Influential Autistic Icons You know who they are - but did you know they were autistic?
SUSAN BOYLE We all remember when Susan Boyle stepped onto the Britain’s Got Talent stage in 2009, her bravado unwavering despite some incredulous looks from the judges. Of course, that all changed when she blew people away with her incredible voice and went onto sell millions of records around the world. In a 2013 interview with The Observer, Susan went public about her diagnosis of Asperger’s that she had received the previous year. She told The Observer “Asperger's doesn't define me. It's a condition that I have to live with and work through, but I feel more relaxed about myself. People will have a greater understanding of who I am and why I do the things I do.”
8
STANLEY KUBRICK One of the greatest filmmakers of all time was also one of the biggest perfectionists, often driving his actors to breaking point as he reshot the same scenes countless times (the 1980s horror classic The Shining saw the famous “Here’s Johnny!” scene take up to three days to film and the use of sixty doors, according to lead actress Shelly Duvall). This demand he placed on perfection, as well as his unbelievable talent, saw him create cinematic greats such as 2001: A Space Odyssey, Eyes Wide Shut, A Clockwork Orange and many more. Kubrick’s obsessive behaviour combined with other behavioural traits (narrow interests and lacking social skills) led to him being diagnosed in retrospect by Dr. Michael Fitzgerald and co-writer Viktoria Lyons in their book Asperger Syndrome: A Gift or A Curse?
DAN AYKROYD Writing and starring in pop culture classics such as Ghostbusters and Blues Brothers, this king of geek culture spoke of his diagnosis of Asperger’s in a 2004 interview with National Public Radio. In a 2014 interview with The Guardian, he stated “My very mild Asperger’s has helped me creatively. I sometimes hear a voice and think: “That could be a character I could do.”” Fun fact – his special interest of ghosts and law enforcement eventually led to the creation of the most famous ghosthunting franchise in the business!
9
TEMPLE GRANDIN Probably the most famous autistic spokesperson in the world, Temple’s influence cannot be overstated. Following her diagnosis in her 40s, she was one of the first to offer her insight with the world about her experiences as an autistic woman, at a time where autism was even more misunderstood than today. Without her, it is safe to say many similar autism advocates would not exist today. She was named in the “Heroes” category in the 2010 Time list of the 100 most influential people in the world – we can certainly agree!
HEATHER KUZMICH This art student and American fashion model infamously became the fourth runner-up in cycle 9 of America’s Next Top Model. Starting as the underdog of the competition, she shocked the judges with her excellence in the photo shoots. She was diagnosed at age 15 and suffered with her communication skills throughout the competition, sadly leading to her elimination. Despite this, she won nine Covergirl of the Week awards during her run and remains a huge fan favourite among the show’s fan-base. Since then, she has appeared on the cover of Spectrum magazine, a magazine for families and people with autism.
10
Understanding The  Wakefield Study Just how was the most famous scientific claim about autism debunked? And more importantly, why do some people still believe it? WORDS: OLIVIA ARMSTRONG
11
I n 1998, Dr Andrew Wakefield published a
All 12 cases investigated were found to be
case study that shocked the medical world.
misrepresented or acquired via unethical
After conducting tests on 12 patients, he
means, with there being no evidence of a link
claimed to have found a link between the
between the MMR vaccine and autism. If that
MMR triple vaccine and colitis (a digestive
wasn’t shady enough, Brian dug even further
disease) and, most shockingly, autism.
and found significant evidence that Dr Wakefield has falsified his data in a plan to
The MMR triple vaccine is designed
exploit a vaccine scare that could earn him up
to prevent measles, mumps and German
to £28,000,000 in revenue.
measles and is normally distributed to children around the ages of 1 – 5. Dr
From this, Brian Deer concluded that there
Wakefield’s findings asserted that 8 of the 12
was no way Andrew Wakefield had simply
children displayed behavioural symptoms
gotten it wrong and made a mistake. This was
linked to autism only days after the
a malicious lie designed to feed into a scare-
vaccination, a syndrome he called autistic
mongering campaign that he could
enterocolitis.
comfortably profit from and his claims were branded “an elaborate fraud” by the British
The paper was published in British Medical
Medical Journal.
Journal The Lancelet and was followed by a press conference at the Royal Free Hospital
Andrew Wakefield was disgraced and struck
in London. As his findings were presented,
off the UK medical register in 2010, not just for
Andrew Wakefield claimed that the use of
his false data but also for the unethical
the triple vaccine was linked to behavioural
methods in which he carried out his studies
developments associated with autism and
(including purchasing blood samples from
called for the MMR vaccine to be
children at his son’s birthday party in 1999). To
suspended. This resulted in a huge drop in
this day, he denies any wrongdoing and stands
the use of the MMR vaccine in the UK, from
by his beliefs. He was criticised by a high court
92% in 1996 to 84% in 2002.
judge in 2005 for trying to silence his critics, warning them that he would sue for libel.
So, that would seem conclusive, wouldn’t it? Except for one problem. It was all made up.
British Administrative Court Justice Mitting officially stated in a 2012 BBC Report “There is
Journalist Brian Deer published his own
now no respectable body of opinion which
investigation into Wakefield’s claims with
supports Dr Wakefield's hypothesis that MMR
the British Medical Journal in 2004 and
vaccine and autism are causally linked.” There
blew the lid right off the case. He found Dr
was also proven to be no linking the vaccine to
Wakefield had altered information about his
colitis either.
patient’s medical histories in order to support his claim and unearthed clear
However, the impact of the study did not end
evidence of fraud in the results.
in 2012 and its influence is felt even now.
12
Despite the revelations of Brian Deer's investigation, there is still signs of immense damage being done as the result of Dr Wakefield's research, even years after it was proven false. There have been over 9000 deaths from 2005 to 2015 due to preventable diseases according the Anti-Vaccine Body Count and while it is impossible to prove all of these were due to fear of the autism link, these was notably a huge increase in celebrities such as Jenny McCarthy coming out in support of the Wakefield Study in 2007, despite it being officially debunked three years prior. So, the question remains; why would the anti-vaccination movement continue to this day? In this digital age of free information, even a quick google search would show this study was bogus. So why do so many parents worryingly refuse to vaccine their children and risk leaving them open to easily preventable diseases? Even current US president Donald Trump is in on the myth, taking to twitter to proclaim there were “many such cases” of vaccinations being linked to autism (despite, as we have just seen, there has never been any evidence to suggest this beside the disproven data).
Taken from Donald Trumps twitter, 2014
This also presents further unfortunate implications; the refusal to vaccinate a child based solely on the fear that it may turn a child autistic is riddled with uncomfortable messages about how autism is viewed and portrayed in media. To view a preventable disease such as measles (which can be deadly, in rare cases) as the lesser of the two evils compared to autism speaks volumes about the lack of acceptance some parents can have in their view of autistic children.
13
For autism specialist Liza Dresner, acceptance of autistic children from their parents has proven to be infinitely more valuable for them to lead a happy and successful life instead of trying to find an explanation for why their child is different. “Understandably, many parents feel the need to ‘blame’ something or someone for their child’s diagnosis,” she says. “Whether ‘frozen’ mothers (reference to another debunked study which asserted that autism is caused due to lack of maternal care) or vaccines, it is easier to blame than to accept. The reality is that there are probably several different conditions within the autism spectrum resulting from different genetic and/or neurological causes. None of these are anything to do with parental behaviour or vaccines or environment. Recently, I have been told it is all due to mobile phone signals.” In regards to why some parents continue to believe this study, Liza states that it is a projection of their own desperation to find answers in a situation that poses no questions. “Some parents have clung onto vaccines as a way to explain what to them is the unexplainable and as such we can only say that the most important thing is to accept their child and to offer love and active support,” she says. It remains to be seen whether any true explanation of why autism exists will ever be found in our lifetimes. In the world of science, theories have ranged from the logical, such as environmental factors, genetics or neurological development to the completely implausible, such as the assertion that autism is caused by parasites and the way to cure your child is to treat them with bleach (this was shockingly endorsed by American organisation Genesis II Church). Instead of questioning why however, it is our duty to ask how we can best to care for our children and their needs, in order to help them grow up into happy and healthy autistic adults. Every child is different and unique and that uniqueness should be embraced with open arms: no child can ask for any less than that. More information about Liza Dresner and her work can be found at https://resourcesforautism.org.uk/.
14
WORDS: OLIVIA ARMSTRONG
FUNCTIONING LABELS It's not as simple as "High" or "Low" I magine: you’re walking in the supermarket.
And then you remember the old saying
You’re doing your weekly shop and you stop
“Because labels are for soup cans! Not
at the soup aisle. You pick up two cans, both
people!” You then put the soup in your
the same flavour but each a different brand.
basket and privately laugh to yourself,
One has a label that says “High-functioning!”,
imagining living in a world where people are
with a description that it’s just like any other
labelled like that. However, for autistic
soup. The other has a label saying “Low-
people, it is a reality for many of us.
functioning!”, with a description of how it can’t give you the same nutrients as regular
Functioning labels are a can of worms (or
soup. There’s no explanation why and most
soup, in the case of this metaphor) that have
of the ingredients are the same. You stop
existed in the autism community for a long
and think to yourself, “wait – aren’t these the
time.
exact same flavour? What makes one so much capable than the other?”
15
It is believed that being described low or high-functioning creates many preconceived notions of what symptoms an individual may experience and how ‘acceptable’ these symptoms are perceived to be. Functioning labels are a judgement of how ‘high’ or ‘low’ a person is on the spectrum in accordance to their symptoms and how well they can function physically and socially in society. Psychologist Louise Beattie was diagnosed several years ago and has extensive expertise in mental health research. She believes that the labelling process is less about a judgement of the welfare of autistic people and more of a statement of what is expected in a neurotypical society. “I feel with functioning labels, it’s just insulting all-round,” she says. “It’s insulting to people deemed ‘high-functioning’ because it creates an expectation that we don’t have many issues and it’s a value judgement of what is desirable made by neurotypicals.”
“Language is very important. People that don’t understand disability or identity issues are happy to lump autism in with other mental health conditions. But autism is dissonant and many people that are autistic are comfortable with the label."
"And it’s also insulting to people deemed to be ‘low-functioning’ because it’s stating they aren’t functioning the way they should. It goes back to what is valued in the general population and that’s to be like them. And if you can be like them and hide your symptoms, you’ll fit in and we’ll accept you. And if not, we won’t." One of the biggest problems with this approach that both Louise and many in the autistic community have stated is the oversimplification of a complex disorder. Every individual on the spectrum is different and many will experience a range of different symptoms and abilities. For example, one autistic person may be an excellent speaker but have difficult reading skills and problems with handwriting. Another may be unable to speak or communicate verbally but their writing and reading skills are exceptional. To judge one as more ‘lowfunctioning’ than the other is not only unhelpful, but also oversimplifies one as more “able” than the other despite the difficulties and talents both display. The talents of a ‘lowfunctioning’ autistic person may be dismissed, whereas a ‘high-functioning’ individual’s struggles are left without any consideration.
16
Coincidently, Louise notes that many neurotypical people often use functioning labels in reference to an autistic people but the term “autistic” itself has also garnered a similar controversy regarding its acceptability. “I didn’t like the Asperger’s label,” she says. “Language is very important. People that don’t understand disability or identity issues are happy to lump autism in with other mental health conditions. But autism is dissonant and many people that are autistic are comfortable with the label. I think the wishes of the community and the individual should be respected. “My supervisor once said “Everyone’s a bit on the spectrum.” I think for other mental health conditions, statements like that are normalising their symptoms, which is a good thing. But for us, it’s trivialising and dismissing to the experiences that we have.” It goes a little deeper than simple dislike of a label, however. When the issue of state support comes in, the cans of soup get even bigger. Dr Brian R Brock from the University of Aberdeen (notable for his publication ‘Autism, Care and Christian Hope’; Journal of Religion, Disability and Health 2009), says the issue of finding who fits which label heavily muddies the waters of who is qualified to receive financial support. “There’s a lot of social dynamics around diagnosis that are quite complex. In a sense, it’s not exactly a compliment to receive the label,” he says. “At another side, you can’t have access to any excess support unless you are so labelled. Parents obviously have certain struggles about whether or not their child is sufficiently in need of support to put up with the social stigma. “People who clearly do need it but are high functioning enough to understand what is going on have to go through a ritual of themselves or somebody else going through a list of what they can’t do in order for them to continue to be part of state support. That’s an uncomfortable place to live in. So, the act of giving a diagnosis and then forming an identity around it comes with a lot of complexity.” The key word Dr Brian uses is complexity: with functioning labels, the notion of being classed as ‘high’ or ‘low’ are two extremes that allow for no breathing room. After all, a supermarket is a big place full of flavours – and there’s a lot more to it than just cans of soup!
Want to see more thoughts on Functioning Labels? Check out pages 35 & 36 for more autistic opinions!
17
A Chat With... Christa Holmans C hrista Holmans (aka Neurodivergent Rebel)
NR: Autism is NOT a tragedy! The most damaging
has been a longtime writer, artist and
idea that neurotypicals have about autistics is that
advocate for the autistic community. Her
“autism is something that needs to be corrected or
work in raising autism awareness is extensive
cured”. Neurotypicals developed “therapies”,
and I'm thrilled to have a chat to her about
designed to make autistic people “more normal”
her experiences. For more of her work, check
can destroy the self-esteem of autistic people
out https://neurodivergentrebel.com/ or
(mostly children) who undergo them.
follow her on twitter at @NeuroRebel.
In addition, the notion that autism can be cured is equally devastating.
So, first of all, in the years you’ve been advocating for the autistic community, what
Autism is painted as such a tragedy that parents
do you think are the most damaging
(who don’t know autism cannot be “cured”) are
perceptions neurotypical people can have of
willing to give their children BLEACH to get rid of it.
those of us on the spectrum?
19
Instead of loving their children, many parents are set out on a war with their own child’s very nature. It reminds me of the days when exorcisms were used for mental health issues and epilepsy. These parents act in a way that contradicts science and reason, as if driven by powerful superstitions – where autism is an evil to be chased out of a child. Has anyone ever told you or someone you know that they “don’t look autistic”? NR: Oh yes, I see people say this to others on Twitter and social media all the time. The thing is autism doesn’t really have a look.
What do you think is the worst stigma you’ve came across against ASD?
Do you have any experience with “masking” (hiding) your symptoms?
NR: Functioning Labels – they are used to categorise, sort, and divide us. When you
NR: When you grow up 'strange', people pick
are 'high-functioning' you are told you don’t
at you. When someone points out that
get to have an opinion about autism because
something you do is 'weird', you pack it away
you are 'only a bit autistic'. But when you are
and stop doing that thing in front of people.
called 'low-functioning', you are put in a box
The more people pick at you the more you put
where others ignore your strengths and feel
away. Since being diagnosed, I’ve been
like they need to talk for you. If you grow up
working to unpack all those things I only do in
being told you’ll never amount to anything, it’s
private. I care much less about what people
hard to grow past that.
think of me these days. I’ve never been happier, and my confidence has risen
What do you think of the portrayal of autistic
dramatically.
characters in modern media?
Do you think it has anything to do with being
NR: I would LOVE to see more gender
an autistic woman?
representation other than heterosexual males and I would LOVE for more autistic actors to
NR: I’ve heard that autistic men mask too,
get these roles. It’s about time we had some
although it seems like society puts more
real representation.
pressure on girls from a young age to act in a certain way. Manners were drilled into my head early.
20
Personal Anecdote A personal truth from the editor
W ords have always been a comfort to me. Even now, as a journalist in my final year of my honours degree, I sometimes struggle to express myself in front of other people. However, in the past four years, I have worked tirelessly to improve myself as a person and in my relationships with others. Most of this change began with my diagnosis, at the age of 19. When I was a child, I thought the world was strange and I was the only person who made sense. Why did other people have all these unwritten rules only they knew and not me? Why was everything so loud and uncertain? Why would someone say one thing when they really meant something else? However, being five years old comes with a raw fearlessness and willingness to question what doesn’t make sense. And most adults I grew up with could tell you that I never stopped questioning. After all, the world was strange, wasn’t it? My teenage years brought a different perspective. Those unfocused, ugly and dark years of realizing that I was outside looking in at an environment not made for me. I was the one who didn’t make sense. Because of my unfocused uncertainty, it began to reflect in my appearance. Something that has carried from my childhood into my adult life is my compulsion to have my physical appearance match my state of mind. To put it simply, having the outside match the inside. At the current point in my life, it is now one of my favourite things about myself as it allows me a creative outlet for my emotional state. If I wake up feeling very light and bubbly, I’ll wear a dress in a light colour and construct the makeup and hair from top to bottom. If I feel very worn down and my mind is all over the place, I’ll opt for an oversized t-shirt or jumper (sometimes borrowed from my brother). Because I feel greater control in my life, I can express myself in way I want to.
22
However, in those earlier years, things were more complicated. The older I got, the more my environment closed in. I cut my hair above my ears and made no attempt to make it look any better (including an awful floppy fringe that lived and died in the mid-2000s). I refused to wear the school skirt, both due to the scratchy material and my rejection of anything feminine. I was quick to emotions and sadness and in hindsight, this was likely my attempt to mask that. I had a black fleece, which I wore over my school shirt all the time. It became something of a comfort and brought a sense of normalcy, which led me to refuse to take it off even when teachers insisted. My appearance reflected my state; untidy, confused and rather sad. I couldn’t look way I wanted because something in my mind told me that I didn’t deserve to. I didn’t understand things the way other people did. The only time I made sense was in writing. Even now, I sometimes joke about sounding much better on paper than in real life. English was the only subject in which I consistently excelled. I wrote constantly and while most of it was selfindulgent, teenage-angsty drabble, it allowed for structure. Our lives don’t have script writers to make sense of them but through writing, it gives life to words that may only make sense to you. I could write nonsensical and disjointed short stories that I would bin the day after while everyone else had mastered how to speak and not sound like an alien. Out of all the metaphors for autism, being from another planet is by far my favourite. Even most of my social media names involve space or stars in some way. I love the idea of being from space and simply taking a holiday on earth, having to learn their customs and rituals. Most of the qualities I despised about myself in my younger years are now many of my favourite things about myself.
23
So, what changed? Well, getting out of high school certainly helped. Despite still having a couple of my closest friends, high school was not an environment suited to me. Upon my arrival at university, I was introduced to a group of people to whom I would become very close over four years. I was diagnosed at the age of 19 and started attending a support group where I met many autistic women with different experiences. It was one of the few times where I felt comfortable being fully exposed. My classmate’s reactions when I told them about my diagnosis were warm and accepting and my difficulties in social communication soon became a non-issue amoung them. We all had difficulties and in the later years, we provided support for each other. I became open and unabashed about who I was, instead of desperately trying to make them like me. And ironically, it resulted in having more people in my life who enjoyed being with me. Which brings me to now. At this current point in my life, I most likely have more growth yet to do. But I have at least reached a point where I have a much clearer relationship with myself. I’ve begun to enjoy the workings of my mind. My special interests include animation, Hollywood actresses, musicals and drag. I plan my appearance based on my headspace and what I want to look like on a certain day. One day I’ll look dark and goth, the other I’ll be pink and fluffy. And more importantly I’ve reached a conclusion: the world does have rules. And many of them don’t make sense. But once you know those rules, you can bend them. You can create a space that suits you. Write down your rules and enjoy them, even if they only make sense to you. As child, I thought the world was strange. As a teenager, I thought I was strange. And now, as a young adult, I have reached a new conclusion. The world is strange. And so am I.
24
the parent paradox Controversy and parenting go hand in hand in the autism community - so how is the best way to go about it? WORDS: OLIVIA ARMSTRONG
25
P arenting is one of the hardest jobs in the world. Any parent will tell you that.
and concerns raised within the autistic community.
There’s the baby years, school days, trying to figure out what’s cool and what
“For one, it annoys me as an autistic
the kids are wearing these days.
person to see it. It makes us invisible,”
However, when your child is autistic, it
she says. “We don’t want to hear a
can create some anxieties for what is
parent talking about us who can’t fully
unfamiliar territory for many parents.
describe the experience of being us.
What is the best way to accommodate
It’s teaching the rest of the world that
them? How can I give them the support
we can’t speak for ourselves.”
they need? And most importantly, how do I give them the respect their
Therefore, it is important to be
diagnosis deserves?
conscious as a parent to prioritise your child’s thoughts and feelings as the
There have been a string of
most important. Raising any child is
controversies in the autism community
filled with challenges but it is
regarding parenting and what not to do
important to be prepared for a child to
when raising an autistic child. There are
be anything as they grow up, be it
several tell-all memoirs written by
autistic, disabled, LGBT or anything
parents of autistic children that detail
else. You must offer them
some rather disturbing methods of
encouragement and realise that your
parenting in response to their child’s
experiences in raising them should not
diagnosis, which can in turn result in a
overshadow the experiences they have.
huge backlash from the autism community (recent examples include To
However, this can leave some new
Siri with Love by Judith Newman and
parents who have had no prior
Autism Uncensored by Whitney Ellenby,
experience with autism confused and
both of which received immense social
anxious. What is the best way to help
media backlash from autistic readers
your child while also not speaking over
regarding the authors treatment and
them? What is the technique to best
language towards their children).
understand how they feel?
The biggest criticism of many of these
To help with this, Debby Elley, co-
works, aside from the content, is the
editor of AuKids magazine, which is a
notion of the parent speaking over the
positive parenting magazine for
experiences of their children, rendering
children on the autism spectrum, and
them unable to speak for themselves. It
author of a new title 15 Things They
is something many autistic children and
Forgot to Tell You About Autism - The
adults can experience, as detailed by
Stuff That Transformed My Life as An
Mercedes Carpenter: a charity
Autism Parent (due for release in April),
worker from Identity-First Autistic, a
explains:
campaign run by autistic people who work to collaborate with the voices
26
“The first step in helping your child to embrace their autism is to accept it yourself. In my view, if you're able to accept that your child's brain isn't 'faulty' but instead wired differently, you communicate that - both consciously and subconsciously - to your child,” she advises. “Part of the reason we have so many knock-on effects of anxiety, stress and depression in autistic teenagers is because they feel as if they stand apart from society and can't 'fit in'. “Parents have a major role in teaching their children that they don't have to be like everyone else in order to be worthy as a friend or contribute to society. In my book, I ask parents to look upon their children as an orange! Everyone else has an apple and you have an orange. If you spend your entire life wishing that your orange was an apple, you'll miss out on their own unique orangey qualities.” Debby also encourages other parents not to see their child’s diagnosis as a tragedy that needs to be fixed or forced out of them but rather an opportunity to develop their talents and strengths in order to help them grow up healthy and happy. “Autism is not a disease, it's a condition. If you have autism, you're not broken - you were built that way. The stress connected with autism is often caused by the environment - other people being a major factor in the environment as well as sensory issues like noise and lighting. When those stressors are taken away, autistic people can usually function well."
27
“I understand that autism can be very stressful for families and cause people to have to adapt in ways that they weren't ready for and are sometimes deeply inconvenient. My own family life, with autistic teenage twins, is full of such adaptations. But you only get one life, and if you spend it feeling that your child's condition is a tragedy, neither you nor they are going to be happy.” So, according to Debby, what is the best way for parents to support their children after diagnosis? “It's important that parents allow their children to mix in public places when it's not stressful for the child to do so,” she says. “Don't cringe or 'shush' them if they aren't disturbing or hurting anyone if the public is to embrace and understand autism, they need to see autistic people and they need to get the message that autistic behaviour is okay and that they shouldn't be alarmed or bothered by it. “That only comes from parents being prepared to let others witness their children's differences without feeling embarrassed or as if they should 'normalise' them or force them to conform. That's a big ask for parents when autism has often been presented to them quite negatively at diagnosis. For this reason, I think we should be looking far more carefully at how autism is presented to parents at the diagnosis stage.”
"If the public is to embrace and understand autism, they need to see autistic people and they need to get the message that autistic behaviour is okay and that they shouldn't be alarmed or bothered by it."
Parents and activists like Debby serve to remind us that it is important to take into account putting your child’s needs before the needs of others. Instead of forcing them to socialise or play the way you see other children do, listen to your child because they are the most important. If they are clearly in distress, take them out of that stressful environment. Encourage their hobbies and interests, even if they are unusual. Mistakes will be made and lessons will be learned but, as Debby says, learn to embrace the orangey qualities and you and your child will be happier for it!
28
Film Review
WORDS: OLIVIA ARMSTRONG
Mary and Max (2009) M ary and Max is one of those films that
As Mary grows up and Max experiences
largely slipped under the radar when it
many alarming changes in his life, their
was released in 2009. Despite being
friendship takes a journey through
received incredibly well by critics and
hardship, misunderstandings and
even being the first animated film to
companionship.
open at the Sundance film festival, it did not receive a wide release and was
The animation is wonderfully crafted,
largely swept away and forgotten about.
showing painstaking attention to detail
The tragedy of this not only comes from
and minimal use of colour. Max is
it being a quietly intense yet emotional
performed by the late, great Phillip
experience but also featuring one of the
Seymour-Hoffman who gives one of his
most nuanced and detailed portrayals of
best performances in the later years of
autism in film history.
his career. Mary is played by Toni Collette, with Bethany Whitmore providing the
Mary and Max is a tale of friendship
voice of young Mary.
between two unlikely people: Mary, an awkward eight-year-old girl with a
Mary is an insecure and shy young girl,
neglectful family living in Australia and
who is regularly bullied and has parents
Max, an autistic, middle-aged man living
who are more depressingly realistic in
in New York city. They become pen pals,
how neglectful they are, instead of being
after Mary picks a name at random from
outright abusive.
a phone book.
29
By contrast, Max is a lonely man with an
As a result, he is one of the most well-
eating disorder and a hatred for people
rounded and excellent portrayals of
who litter. The two are at vastly different
autism in film history.
stages in their lives and much of the film is spent with their letters being sent back
Mary’s story is also emotionally resonant,
and forth, learning about each other and
especially in the second half as she
attempting to help with each other’s
ascends into adulthood. It is clear that
problems. This can lead to many quiet
she also suffers from poor mental health
moments of profound relatability,
as a result of both her upbringing (which
especially for Max as he struggles with the
is shown in great detail during the first
anxiety Mary’s letters cause him and his
half) and her relationship with Max
confusion from the responsibility of finally
being thrown into turmoil due to an
having a friend for the first time in his life.
insensitive misunderstanding. However,
Despite this, it is also morbidly funny, from
the ending balances out the contrast
young Mary’s misunderstandings about
between both characters perfectly;
where babies come from to some of the
being both heart-breaking and joyful all
downright bizarre events that occur in
at once.
Max’s life. While Mary and Max is a beautifully Max’s autism also receives a fair bit of
crafted work, it is not one to show to
focus, with him being diagnosed halfway
children and may be better suited to a
through the film and firmly rejecting the
solo watch. Despite the excellent stop-
notion of him being ‘cured’, saying that it
motion animation, the film goes into
would be the same as trying to change
fairly dark and intense territory regarding
the colour of his eyes. He lives in the
Mary’s emotional turmoil and much of
environment of a busy and unforgiving
prejudice and ableism Max faces. With
New York, which is far from suited to him
that being said, it is an underrated gem
and his struggle with loneliness while
and features representation that is both
having no one who understands him
respectful and relatable. Seek it out and
except Mary makes for the emotional core
keep the tissues nearby.
of the film. The director, Adam Elliot, based Max’s character on his own New York pen-pal of over twenty years and it’s clear he shows an intimate understanding of autism and how it can affect Max’s daily living due to his hostile and confusing environment.
4.5/5
30
Guerilla and Stealth Aspies - Stage show 31
WORDS: OLIVIA ARMSTRONG
E ver wondered what a stage show
or having to hide their true natures from
consisting of autistic people calling for
those around them. The show premiered at
revolution would look like? Imagine no
the Edinburgh Fringe Festival in August 2017.
more: Stealth Aspies are here and they’ve
Creator Paul Wady set out creating this
got plenty to say!
ambitious project as part of his activism regarding the acceptance of autism and
Stealth Aspies are a spoken word
neurodiversity.
performance group, aiming to capture and reflect the experiences of autistic
“I created my own solo show called Guerilla
people who were either late diagnosed
32
Aspies, which converts audiences to
““What keeps me focused is the joy of the
autism,” he says. “It is now in its fourth
challenge of performing. I’ve been in front of
year and it is also playing the Edinburgh
audiences since I was 18 and enjoy doing the
festival alongside Stealth Aspies
opposite of what my autistic nature is
Company.”
supposed to,” he told me.
Guerilla Aspies is also a published title,
"Life is just one long action film for me when
written by Paul with its full name
you perform. That and telling the truth more
"Guerilla Aspies: The Guerilla Aspies
than I ever have in my life. It has been a
Handbook: A neurotypical society
shocking thing but I’m getting used to it.
infiltration manual."
Even then, all of us are still discovering how to stop the Neurotypical act and be
However, the show has since expanded
authentic."
and now includes several performers, discussing life on the spectrum with
What makes Paul’s objective’s unique is his
layers of positivity. The show (now named
insistence of the inclusion of people on the
Stealth Aspies) was born out of a survey
spectrum. Without them, the whole show
conducted online and involves several
has no purpose. As well as the inclusion, the
people Paul grew to know through his
purpose of the show is to prioritise autistic
social circle.
voices and instil a sense of pride in living on the spectrum, while also being informative
“I put out a survey on @StealthAspies at
with a side of snarky good humour.
the end of 2016. The questions were about when someone had received a late
“The objective is to form a collective of out
diagnosis or was still in the neurodiversity
autistic people, able to perform and bring to
closet,” Paul explains.
life the words of Aspies who cannot. Many of the pieces we write are anonymous. We seek
“How did they cope? What was life like?
to realise an authentic voice for the
The results were used as the script of our
neurodiverse on stage and recordings. No
first show. I knew Alain English already
one involved is not on the spectrum. Our
from the London social groups. I met
integrity to our autistic voices is everything,”
Hannah Yahya and Sarah Saeed at the
Paul assures us.
Autism Arts festival first staged in Kent University at the start of 2017 and I met
If you are interested in the live shows, Stealth
Janine Booth through my job with the
Aspies will be performing at the Brighten
National Autistic Society, where I tour the
Festival on the 22-24th and the 26-27th May
UK training professionals in autism.”
and later in the year on 5-16th August in the Edinburgh Festival.
A demanding schedule to be sure, but Paul states that his passion for the
If the world’s a stage, Stealth Aspies are
performing arts as well as his message
certainly taking it by storm!
fuels his desire to keep the show going.
33
What do we think of... Functioning Labels??
35
In this section, we ask our interviewees and other autistic participants their perspective of issues that directly affect us mentioned throughout the issue. This edition, it's Functioning Labels!
"Functioning labels... well I'm against them. It makes certain individuals feel worse about themselves knowing they're 'low functioning' and that might become demotivating." - Tobias Tijmen, 17, Student.
"Functioning labels betray a tyranny of competence in our society. A means by which everyone is rated by adult maturity. Formative experiences like having relationships and children. Jobs and mile stone events and abilities to relate and communicate and manipulate and dialogue and concede and… all the things not associated with ‘The Autistic’. I see it all as huge cruel generalisations. A means of depersonalising our kind. Clinical mutilation and oppression of a race of people." – Paul Wady, Creator of Guerilla Aspies
"They’re a necessary evil. I feel uncomfortable using the phrase ‘high-functioning’ since I’d never describe someone as ‘low-functioning’, but I have to admit some adjective or descriptor must be needed to describe someone’s needs: otherwise, you could say “an autistic person’s about to walk through that door” and they won’t know whether to expect a university professor or someone with severe learning difficulties." – Chris Bonello, Creator of Autistic Not Weird
"Not useful - we're all a mix of high and low functioning, and what is the "function" of a human anyway?" – Madge Woollard, Music Teacher and ASD advocate "I don't really like them. I'm classed as high functioning but that then doesn't make anyone "low functioning" less than me? Like, it's wrong." - Anna Coulson, 24, Care and Auxillary assistant,
36
"You Don't Look..." What does an autistic person look like? WORDS: OLIVIA ARMSTRONG
37
T here’s always an image, isn’t there? Be
“It happens all the time. When they first
it particular races, genders, sexualities or
meet you, they’ll treat you perfectly fine.
disabilities, it is almost impossible not to
Then they’ll realise you’re not quite the
run into a preconception of what
same as everybody else and they’ll start to
different people ‘should’ look
treat you like an idiot, like you’re obnoxious,”
like through years of stereotyping and
she says. “As soon as you try to explain them
general ignorance. And autism is no
that it’s because you’re autistic, it drops
exception. While neurodiversity
straight down to feeling sorry for you and
movements and activism have paved
treating you like a little kid."
the way for more diverse roles for autistic characters (with the most recent
“I’ve had guests at work who will talk to me
example being Billy Cranston from
and find out I’m married and have a
Power Rangers (2017) as a young, black,
daughter but then, when they find out I’m
autistic boy with fairly believable
autistic, they’ll be confused that I’m married
symptoms), the fact remains that many
with a child.”
autistic portrayals in media tend to follow similar patterns.
Gender can play a large role in this (as discussed on pages 1 – 4). As being a woman
Whether child or adult, many portrayals
on the spectrum is not seen as the
have similar characteristics: white, male,
stereotypical image of an autistic person, it
socially inept, often seen as the
can cause surprise to even see it. Sarah told
‘annoying’ one of the group and a huge
me she believes media exposure of autism
amount of talent in areas concerning
as a predominantly male condition (be it
math or science. Examples of this can
fictional or non) leads to a large amount of
include Sheldon Cooper from The Big
this confusion.
Bang Theory, Shaun Murphy from The Good Doctor, Sam Gardner from Netflix’s
“You’ll tell someone you’re autistic and
Atypical, the aforementioned Raymond
they’ll state ‘I’ve never heard of a girl with
from Rain Man (page 5) and many more.
autism’. I think as soon as there are more
Patterns like this create certain
depictions of female autistic roles in media,
expectations.
whether it’s books, movies or tv series, it could change a lot. Especially if the plot
Therefore, when the expectation isn’t
were focused on the autistic female’s point
met, there can be trouble even
of view,” she explains.
identifying autism when it is directly in front of you. Sarah-Lea-Critchfield was
But it doesn’t all come down to having an
diagnosed at the age of 11 but now at 21,
early diagnosis. Many studies have shown
as a married woman with her own child,
that woman and people of colour are more
she believes the problem of people
likely to be diagnosed later in life, which
expecting her to be a certain way and
falls into another hurdle of not complying
treating her accordingly has followed
to an ‘image’ of autism in media.
her into her adult life.
38
As well of being mostly male, many
As well as this, Gayle explains that her
portrayals and studies tend to fixate on
experiences also include not being taken
autistic children. In 2008, Suzanne Wright,
seriously by her peers and this causes
the founder of Autism Speaks (the largest
many of her difficulties in
and most prominent autism charity in the
communication.
US) made the public statement in an interview with The Guardian: "We think
"As a person on the spectrum, it's worse for
autism is a relatively new epidemic. After
me and people like me sometimes
all, where are all the 50-year-old autistic
because many people take language,
people? They just don't exist in these
communication, interactions for granted.
numbers.” Statements like these from
Some of the things that they don't give a
prominent (albeit controversial) figures in
second thought to are actually a big deal
the autism community serve to reinforce
for us or can make us feel uncomfortable."
the belief among neurotypical people that adults or older people on the spectrum
"We have rules in our communication in
simply don’t exist.
some cases as where others don't. I have my diagnosis, after a fight to prove it. I get
This can even result in disbelief when a
on with things and I can speak out if I
person ‘comes out’ as autistic to their peers,
come across people who antagonise me.”
as they aren’t believed to fit the image of
she says.
autism even after getting their diagnosis later in life and having to fight to prove it.
Autism comes in many forms and no one
This was the experience of 42-year-old
is the same. As time goes on, it’s obvious
Gayle McNicol, who received her diagnosis
that media portrayals are getting better
several years ago along with her two
and various stereotypes are on their way to
teenage children. She told me that her
becoming non-existent. As the world gains
experiences after being diagnosed led to a
a better understanding of autism however,
flux of negativity in her life.
having these specific tropes associated with autism is a clear hurdle that needs to
“I cut my connection with certain people
be moved past.
because of how negative they were when I confided in them about being on the
They are still often used as a blueprint for
spectrum,” she says. “They didn't
writing an autistic character but by
understand how important the diagnosis
listening to the stories of autistic people in
was to me or how it would mean closure
real life, it’s very possible we may see there
on a huge journey in my life that I had
are more sides to autism than we ever
spent so many years not knowing why I was
thought possible.
so different."
39
WORDS: OLIVIA ARMSTRONG
Queer and Autistic? it's more likely than you think B eing queer and being autistic is an
Psychiatric Association voted to remove
interesting dynamic. Despite both aspects
homosexuality from its list of mental
seemingly having nothing to do with each
illnesses and there have been many
other, there are a surprising amount of
examples in the past (and sadly, even today)
parallels that can be made with identifying
of the belief that queer identities could be
as LGBT+ and being on the spectrum.
'cured' through various therapies and more extreme tactics. This creates a parallel to
It was only in 1973 that the American 41
identifying as autistic, as many advocate
groups today claim autism can be ‘cured’ through ethically dangerous methods (as mentioned on page 14). But being both? That creates a different identify unto itself. It also doesn’t come without struggle. Being autistic and queer creates an added pressure of belonging to not one but two marginalised groups, which can create an intersectional stigma around identity, as explained by music teacher Madge Woollard in her experience as a lesbian, autistic woman. “All marginalised groups have a stigma attached and if you're two groups, such as gay & autistic or black & disabled, you're doubly so. We can be anything that neurotypical people can be. In fact, proportionately more of us are LGBT+,” she explains. Her statements are lately being proven to hold a lot of truth, as explained in a recent international 2017 study by Dr. Mark Stokes from La Trobe University in Melbourne Australia. The study shows that “when compared to controls, individuals with ASD demonstrated significantly higher sexual
"All marginalised groups have a stigma attached and if you're two groups, such as gay & autistic or black & disabled, you're doubly so."
diversity, reported gender-identities incongruent with their biological sex, and higher gender-dysphoric symptomatology. “The ASD group reported higher rates of asexuality; decreased heterosexual attraction and contact; increased homosexual attraction; ASD females reported higher homosexual contact; and were not concerned with the gender of their romantic partner. ASD individuals who were gender non-conforming reported better relationships with their opposite-sex peers during their schooling years than their gender-conforming peers did.”
42
Therefore, the connections between being queer and being autistic creates an intersectional identity that can result in experiences of stigma and discrimination. According to Sam Rankin from Equality Network (one of Scotland's leading national organisations for LGBTI rights and equality), lack of respect for these intersections can be crippling for autistic LGBT+ people, along with specific examples of what can result from this. “Not enough specific work has been done for us to be confident that we really understand all the complexities about the intersections of autism with LGBTI,” he says. “What we do know is that autistic LGBTI people are often not trusted to make their own decisions. This results in LGBTI autistic people not being believed about their own identities. Such people have told us that people often question their capacity to, for example, identify as bisexual." “Others have reported that Gender Identity Clinics (GICs) have been particularly concerned about providing access to hormones and surgeries and that their transitions have taken longer as a result. We have also heard that appointments at GICs can easily become an autism awareness session for the service rather than an appointment about the service user’s needs.” Therefore, these problems are not solely related to stigma but also a lack of research and understanding into the autistic experience of being LGBT+, resulting in lack of support and needs not being met by services and organisations. Sam advised this is what needs to change in order to see true progress. "Of course, addressing stigma is vital and very important. But it is not the only issue that needs addressed. We really need an increase in political will from all sides to talk to more people with lived experiences of these issues to ensure that we properly understand all the issues that they experience. If we don’t understand all the issues properly then they will continue to be under addressed and autistic LGBTI people will not have their needs comprehensively met by services," he explains. Therefore, an increase in awareness on both the political and social side of things could supply the push we need for a better understanding of queer autistic people. The more awareness that is raised on this topic, the more help and support can be given to those who need it. When it comes to autism, many of the solutions presented are often easily solved by allowing those with the relevant experiences to tell their stories and listening to their concerns. That way, we can really start to move forward in ending the mistreatment that can be easy to miss the first-time round.
43
Thank you for reading! Loved this issue? Want issue #2?
Tweet @MaskingMagazine and spread the word! Follow us on social media and leave some feedback! Special thanks to all our interviewees for participating in this issue!