Volume 1. No. 4 |
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May 6, 2015 |
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Abstract: I
do not suggest that it is only girls with Aspergers syndrome (AS) who go
undiagnosed and unsupported. But it was becoming involved with a family
friend, and others driven to distraction trying to get their daughters'
needs recognised, that motivated me to reconsider the purported ratio of
between eight and ten boys with AS to every girl and to examine whether the
professionals' perceptions of what AS looks like are too narrow, and the
diagnostic tools too male-centric. To achieve this I have reviewed autism
theory, considered how and why girls present differently, discussed the
specific problem areas faced by girls with AS, and issues around diagnosis
of girls. In addition, I undertook a survey of women with autism to
ascertain their experiences of seeking diagnosis and support. I conclude
with a list of 30 alternative diagnoses given to females subsequently
diagnosed with autism, and various quotations that highlight the
difficulties these women faced. |
Does the different presentation of Asperger syndrome
in girls affect their problem areas and chances of diagnosis and support?
By Elizabeth
Hughes
Introduction
Sophie used
to be physically sick in the mornings because she didn't want to go to school.
Then one day she walked home while [her mother]Nic was at work and texted her
to say Please don't ever make me go back. Sophie was a target for bullies
because she too constantly found herself on the edge of things, unable to
interpret social cues... however, she would not retaliate terrified of
breaking any school rules and instead soaked up the abuse until she got home
to safety, when the tears and meltdowns would start.
She would
say Why am I like this? Why am I so stupid? I wish I was dead! But the head
just said they needed to toughen up.(Walker, 2012, p. 49)
Sophie, who
was originally diagnosed with Sensory Processing Disorder (SPD), eventually
received a diagnosis of Aspergers Syndrome (AS) and went to a different
primary school for year six, where she was treated with much greater
understanding and intelligence. However she suffered long term psychological
consequences lasting into secondary school, sometimes causing much alarm to her
parents, who attended the ASD parents' support drop-in, run by our local
Child and Adolescent Mental Health Services(CAMHS). Sophie and my daughter
Libby now rank among each other's best friends - not that either has many
friends and Nicky and I find ourselves constantly on the lookout for things
pertaining to giraffes and dolphins, being respectively Sophie and Libbys
special interests. We understand these things about our daughters, and
appreciate that they have found each other, as most other children we know
diagnosed with AS are boys.
Our family's
experience was very different to Sophies. Although Libby is far from
conforming to the norm compared to other girls in her class, she is also
quite far from the norm for girls on the autism spectrum. At times
excruciatingly shy, she is at other times to the same degree compelled to
announce her opinions or dissatisfactions. At the inception day for the
reception class at her primary school, she had within minutes found a board
rubber, and replaced the welcome message with a drawing of a dolphin.
Subsequent outbursts in class, such as when a teaching assistant (TA) cropped a
picture of her guinea pigs to make a collage, meant that her reception teacher
identified her at age four as apparently requiring a diagnosis. Within a short
time, Libby had an AS diagnosis and a Statement of Special Educational needs
(SEN) in place, as well as a wonderfully knowledgeable and kind TA. We have
good support from an excellent Speech and Language Therapist (SALT), and also
the team at CAMHS. Although we still have a lot of difficulties, stresses,
frustrations and sometimes heartbreak due to Libby having AS, I came to realise
that relatively, we were very much the lucky ones.
I do not
suggest that it is only girls with AS who go undiagnosed and unsupported I
know several boys who were only diagnosed in Key Stage 2 or even later. But it
was becoming involved with Sophie's family, and others who were driven to
distraction trying to get their daughters' needs recognised, that motivated me
to reconsider the purported ratio of between eight and ten boys with AS to
every girl (Brugha, 2009; Roth, 2010; WHO, 2010) and to examine whether the
professionals' perceptions of what AS looks like are too narrow, and the
diagnostic tools too male-centric.
Overview of
theories relating to Asperger Syndrome
The term
Asperger Syndrome was initially coined by Wing in 1981, after her husband
translated Austrian paediatrician Aspergers paper, from 1944. Written in
German, Aspergers paper described what he termed autistic psychopathy",
a particular pattern of behaviour observed in a group of children who were his
patients. By this he meant that these children seemed to have little social
interest in other children or adults, and were more focused on objects, as well
as demonstrating repetitive behaviours. Additionally, diminished eye contact,
motor clumsiness, unusual speech, impulsiveness and sensitivity to sensory
stimuli and to unexpected events were noted.
Coincidentally,
in 1943 another Austrian, psychiatrist Kanner, published a paper entitled
Autistic disturbances of affective contact, about a similarly presenting
group of children. The key differences were that Kanners group of children
also had learning difficulties, and that as he had emigrated to America twenty
years previously, his work, in English, became widely circulated, whereas
Aspergers did not. Consequently, for about four decades the belief prevailed
that autism was intrinsically linked with a low Intelligence Quotient (IQ).
During the
1980s, Wing, and her colleague Gould, introduced the concept of an autistic
spectrum. The spectrum encapsulated the full range of intellect, from those
with severe learning difficulties, to the very intellectually able much like
the general population. Additionally, the spectrum concept acknowledged the
great variance in the way that other markers of autism might present in an
individual. For example some might cope better with unexpected change, or have
more ritualistic behaviour, better emotional regulation or greater sensitivity
to sensory input.
In 1979,
Wing and Gould developed the theory of the Triad of Impairments in autism, as a
result of the Camberwell Study of a group of children at Londons Mawdsley
Hospital. This triad consisted of differences in social interaction, social
communication, and flexibility of thought. These areas of difference are still
very widely used by practitioners when considering a diagnosis of autism or AS,
although under the recently compiled Diagnostic and Statistical Manual of
Mental Disorders fifth edition (DSM-5) the two social differences have become
merged. DSM-5 has also ceased to use the term Asperger Syndrome, so people who
had a diagnosis of AS now have autism.
Removal of
the AS diagnosis can be confusing or upsetting for some people; as will be
discussed below, identification with a particular group can be empowering for
many people. However, it seems that in the UK for now at least, where the World
Health Organisations diagnostic manual (currently the International
Classification of Diseases, version 10) is in general usage, practitioners are
tending to ignore the DSM and continue to give diagnoses of AS where
appropriate. The main differences, and possible reasons why people may wish to
maintain a separate classification, are that those with AS are recognised as
having at least an average IQ, often higher, also no significant speech delay.
However there are many with high functioning autism (HFA), who may be just as
intelligent, but did have delayed speech. Various writers, notably Ros
Blackburn, argue that unlike people with AS, those with HFA have no social
interest whatsoever. (Blackburn, 2011).
The theory
that if someone is unable to imagine or work out what somebody else is thinking
or feeling, they would struggle with social interaction and social
communication is referred to as a lack of Theory of Mind (ToM). In 1978 the
philosopher Dennet suggested that a good test of whether or not someone had a
ToM would be see if they were able to understand the concept of false belief.
In 1985, Baron-Cohen and Frith applied this theory to a selected group of
children, using the Sally Ann False Belief Test. Some of the children were
known to be autistic, some had Down Syndrome, and some neither. They were
matched for mental age. In the test a doll named Sally put a marble into a
basket and then went out of the room. While she was away another doll named Ann
transferred the marble to a box. The children were then asked where Sally would
look for the marble on returning to the room. The prediction was that most
children with autism would expect Sally to look in the box because they would
fail to understand the information they had, from having seen Anns
action, was not shared by Sally.
This test
allegedly demonstrated that children with autism lacked ToM as they did not
realise Sally lacked the knowledge of events that they had. This conclusion
has, however, been criticised for several reasons. Firstly, the experiment
involved only twenty children who had autism a small sample population.
Additionally, the test
relies upon
verbal interaction and language processing, areas in which autistic people are
understood to have serious difficulties. In fact, in a 2005 paper, Morton Ann
Gernsbacher and Jennifer L. Frymiare point out that the syntactic form of the
questions posed by the test is one of the most complex in the English language
(Cohen-Rottenberg, 2011)
Linked to
Baron-Cohens theory of impaired ToM, was the theory that people on the autism
spectrum therefore also lack empathy. But many examples can be given of
situations where people on the spectrum demonstrate more empathy than those who
are not on the spectrum. In our own case, I vividly remember Libby becoming
extremely distressed in year three from learning about the Second World War,
and subsequently in year four from learning about the lives of Victorian
children working in the cotton mills of north west England. Both topics involved
school trips, firstly to the Manchester War Museum, and Stockport Air Raid
Shelter, and subsequently to Quarry Bank Mill in Cheshire. The trips did an
excellent job of bringing the topics to life for the children too much so for
Libby, who had huge difficulty getting to sleep afterwards, because she felt so
anxious and sad about the plight of children who were either in danger of being
bombed, or of becoming trapped in the mill machinery, and generally mistreated.
She was eventually re-referred to CAMHS with anxiety and depression. Nobody
else in her class seemed to be so affected they just learned about it, and
moved on.
According to
Henry and Camilla Markrams Intense World Syndrome theory (2007):
The intense
world that the autistic person faces could easily become aversive if the
amygdala and related emotional areas are affected with hyper-reactivity and
hyper-plasticity. The lack of social interaction in autism may therefore not be
because of deficits in the ability to process social and emotional cues as
previously thought, but because a subset of cues are overly intense,
compulsively attended to, excessively processed, and remembered with
frightening clarity and intensity. Autistic people may therefore neither be
mind-blind at all nor lack empathy for others, but be hyper-aware of selected
fragments of the mind, which may be so intense that they avoid eye contact,
withdraw from social interactions and stop communicating.
Additionally,
it is worth considering how many crimes are committed, showing total lack of
empathy, by people who are of the predominant neurotype (PNT)!1
1The
predominant neurotype refers to those people who do not have an autistic
neurological profile i.e. the majority of the population.
Another area
where people with autism and AS are perceived to have a weakness is in the area
of Executive Function, that is, the ability to plan, self-monitor, and organise
time and resources (Sainsbury, 2008, in Roth, 2010). are claimed to demonstrate
perseveration over the ability to see and respond to the bigger picture.
(Klin, 2000).In some ways, I see this every morning, where Libby becomes so
engrossed in cuddling the cat, or trying out hairstyles / faces in the bathroom
mirror, that we frequently have a nearly-late-for-school trauma. But no
children are great at this sort of discipline, and with hope, she will grow to
join the large number of adults with AS who are very capable of planning and
understanding the need to avoid becoming stuck in one activity. Yes, she
forgot to take her flute to school, but if her mother had not also
forgotten, it would not have presented a problem!
Of
particular interest to me is the perceived link between this processing style,
and prosopagnosia, or face-blindness (Happ and Frith, 2008).Many times, a TA
or a playground assistant has said Hello Libby at the local supermarket, but
she just stares blankly at them, even though she sees them every day at school,
and thinks that they are nice. Yet she can describe in detail the cot and the
carpet in the crche, from nine years ago.
How and why
Girls present differently
Probably the
most obvious areas in which the presentation of girls with AS differs from that
of boys are that girls tend to be more sociable and are less likely to be
disruptive, aggressive, to have attention deficit hyperactivity disorder (ADHD)
or extremely arcane special interests(Attwood, 2006).Again, there is great
variance, and there are overlaps of behaviour between genders. For example,
when our daughter was first referred, I thought that the teachers suspected
ADHD, as she was so impulsive and hyperactive. At that time she was also far
more interested in bikes and Bob the Builder toys than she was in dolls and
toy kitchens, like most little girls of three or four.
Generally,
however, girlswith AS demonstrate better concentration, and their behaviour and
play will centre more on obtaining attention from another person. As young
children, they are more likely than boys to engage in joint attention;
sharing a gaze and an interest with another person. They are usually more
interested in social interaction, though often are frustrated by their lack of
success in this area. Boys play is typically more about obtaining objects, and
less about being socially interactive (Ashton-Smith, 2013). Girls are more
likely to be able to speak about their feelings, and their special interest
is more likely to be dolls, horses, cats, or literature, which on the surface
seem age appropriate whereas an exhaustive knowledge of 17thcentury French
mathematicians or different kinds of pylons or manhole covers would generally
be regarded as odd or eccentric at any age. However, it is the intensity of
these girls' interests that are unusual, but often overlooked by teachers and
parents.
Autism is
known to be of polygenic epidemiology, that is, there are many different genes
involved in the genetic inheritance of a person who has autism, and therefore
the manifestation of autism can vary greatly between individuals. [+REF]It is
also widely believed that environmental factors play a role, but currently,
those factors remain largely elusive. However, some studies (Schellenberg,
2006) have suggested that the genes that code for autism in girls are not the
same as those for boys. Seemingly just as red-green colour blindness is mainly
transmitted through male genes, or a tortoiseshell cat is always female, the
different facets that make up autism seem more likely to be exhibited in one
gender or the other. This often results in more acquiescent behaviour in girls,
and more aggression or disruptive behaviour in boys, who are consequently more
likely to be referred for diagnosis.
Girls
language typically develops in sophistication and abstraction earlier than that
of their male classmates. This, combined with different physiological and
emotional development, and transition to secondary school, frequently causes
the time of puberty to distinguish girls on the spectrum, who had previously
seemed to blend in through their use of echopraxic behaviours. That is, girls
with AS will very often carefully watch other girls, to learn how they are
expected to behave, and therefore can for several years seem to be fitting in
socially. For example, an autistic autobiographer has written that: I watched
people like a scientist watches an experiment (Holliday Willey, 1999, p.42).
Whereas for
most of the boys their differences in social interaction and communication will
have been more obvious at an earlier age:
Often the
drawbacks for an AS girl only become painfully obvious when she hits
adolescence or puberty when her childhood friends, if she had any, may begin to
distance themselves from her quirks and align themselves with other, less
awkward, more popular girls.
(Simone, in
Clark, 2010,p. X)
Specific
Problems of Girls with Asperger Syndrome
At first
glance it may appear that girls with AS are relatively at an advantage compared
to boys. After all, they quite often develop the social skills to make at least
one friend, whereas boys are less likely to do so. Girls are more likely to be
taken into the protective oversight of older girls with mothering instincts
(Ashton-Smith, 2013). Boys are more at risk of being physically bullied, and/or
of being suspended or expelled from school because of retaliation to such
bullying, or because of aggressive or disruptive behaviour in response to other
triggers. But the apparent advantages of being a girl with AS can be very much
a double-edged sword because below the surface can be many issues some of which
I shall now discuss.
Although
girls with AS may be able to make a friend, they are often quite possessive,
and tend to struggle if that friend wants to widen their social circle. The
life of a friendship can be limited if a girl becomes too clingy and
suffocating. Holliday Willey writes that: 'I simply could not see the point in
having more than one friend and I could never imagine Maureen might feel
differently...I never understood group dynamics' (HolidayWilley, 1999, p.
20).As Iland says, 'Girls travel in packs and have a group mentality' (Iland,
in friendships.
I understood
their language, knew if they had made grammatical errors in speech, and I was
able to make replies to anything that was spoken to me; but I never came to
hear what they were really saying. I never understood their vernacular...I was
unable to read between the lines... Subtext and innuendo may as well have been
birds flying by my window. It was frustrating being unable to break into the
thought processes of my peers but I was even more upset when I came to learn
that I never learned from one experience to the next. (Holiday Willey, 1999,
pp. 56-57)
By the
teenage years, most PNT girls will reflect on their own thoughts
(metacognition). As this level of abstraction tends not to come so easily to
girls with AS, it increases the divide between them and their peers (Nichols et
al., 2009).Left out of groups and cliques, they may stand out, and become
vulnerable to bullying. Although less likely to be physically attacked than
boys, many people would argue that the effects of the more subtle bitchiness
of girl-style bullying can actually have more profound consequences on the
emotional health of a girl, especially if the bullying is fairly cryptic so
that it takes time for them to realise they have been bullied, then feel
additionally stupid and low(Ashton-Smith, 2013). Simone writes that: Sometimes
we don't realise we are being bullied until it gets really bad (Simone, 2011).
Physical
bullying is obviously very traumatic, but as it is usually more obvious than
whispers, giggles and knowing looks, it may be more likely that schools will
intervene, where as it is much harder for them to notice and stop sly, hurtful
comments. Simone explains:
Bullying
happens when someone is different and is seen as a threat in some ways, yet
seen as weak in others. Aspergirls fit the bill perfectly...For a spectrum child
it can be the beginning of lifelong post-traumatic stress disorder (PTSD)
(Simone, 2010, p. 28).
There is no
sharp divide between the behaviour of males and females in this respect; girls
do sometimes physically attack, and boys make derogatory jibes, but In a 1994
paper, Lainhart and Folstein pointed out that despite the 4-to-1 male-female
ratio for autism, females made up half the autistic patients with mood
disorders described in the medical literature (Bazelon, 2007).
Simone says
'When the perpetrators see what an effect they're having they redouble their
efforts (Simone, 2010, p. 31).Libby had experience of this towards the end of
year five. One lunch time she was followed around the playground by three
slightly younger girls who kept saying You're weird and giggling. Libby, who
was on her own at that time, had the acumen to say How would you feel if it
was you? to which one replied We don't care ha ha-ha! and another said
Yeah! Keep on laughing! As I had taughtLibby not to retaliate physically in
this sort of situation, she approached the adult supervising that playground,
who said Oh just ignore them. I subsequently asked the school how a ten year
old girl with AS can be expected to ignore three girls who are going out of
their way to taunt her for forty minutes. The school did intervene swiftly and
effectively after I complained, but sadly many parents report that schools
commonly fail to take such action.
Despite the
dawn of the new man in recent decades in some areas of society, the fact
remains that women generally face greater expectations to conform to the
perceived requirement to dress attractively, to be sociable, supportive, and to
be able to multi-task, for example juggling childcare, work, providing food and
keeping the house clean. This places girls and women with AS under greater
strain than either their more typically developing female peers, or males with
AS. They truly are in the position of being a subculture within a subculture
(Simone, 2010, p.13).
As
Ashton-Smith (2013, n.p.) points out:
Bright but
eccentric is a description that seems acceptable when applied to males, but
somehow not so much when referring to a female. A professor of nuclear physics
may have a social navigator wife to guide and smooth over social hiccups, but
as women are supposed to be the most social beings, the reverse situation is
unlikely.
Lawson
conveys the situation eloquently in her poem 'Build Your Own Life. A Self-help
Guide for individuals with Asperger's Syndrome':
I cannot
account for these feelings
Emotions
intense and extreme
But my
issues with everyday dealings
Can cause me
to rant, shout and scream
I don't
desire the make up,
Fashion and
high heels don't appeal
I don't like
perfume or my hair cut,
But my need
for understanding is real...
Your
children and men depend on you
You must be
strong, independent and sure
What if
these things I cannot do?
What if my
timing is poor?
(Lawson,
2003, p.81)
Sadly,
females with AS are more vulnerable than their peers to unwanted sexual
attention, whether it is relatively milder forms of harassment, or serious
criminality. As many of them are less socially mature, or aware of appearances,
than their classmates or workmates, they are more likely stand out, and more
likely to be alone. Because of difficulty in reading between the lines, girls
can struggle to work out the intentions of approaches from the opposite sex, or
to find the confidence to effectively rebuff unwelcome advances. For example, Williams
writes that: 'I was easily led and easily conned and I was easy pickings for
egocentric bullying types... As I was completely unable to say, let alone
acknowledge what I did or didn't want, boys found that they could mentally
corner me' (Williams, 1992, p.74)
If they
stand out as being awkward, and not very streetwise, girls with AS can become
targets for opportunistic offenders. (There are indications that several of the
girls involved in the recent high profile cases of grooming by paedophile gangs
are on the autistic spectrum.) Girls with AS usually have a stronger desire
than boys to have friends (Holtman et al., 2007, in Reynolds, 2013) and as such
can be particularly susceptible to grooming. According to Newport and Newport
(2002, p. 34) 'The relative naivet of autistic girls or their possible wish to
trade sex for 'popularity' may initiate them far earlier [into sexual activity]
but rarely in a healthy way. Mary Newport writes:
Puberty
helped me in some respects because I became sexy. I did everything to cultivate
my looks. My peers reactions began to change in ninth grade. I was not
ridiculed as much. However, puberty was hard because adults were having sex
with me, offering me marijuana etc. I only had relationships with adults. None of
my friends were my age.
As a parent,
I become increasingly preoccupied by the difficult balancing act of teaching
awareness of matters concerning relationships to my daughter, without stirring
up so much suspicion that she might execute a martial arts defence move on the
first boy who tries to hold her hand or put an arm around her! But the
unsettling fact remains that there are plenty of men willing to use and abuse
females, and those on the spectrum are less likely to instinctively realise
when they are in a manipulative or dangerous situation. It is well documented
that boys can be subjected to abuse as well, but, statistically, it happens far
more to girls and women, especially if they are vulnerable to begin with.
In the
context of relationships and sexual maturity, the time of puberty can be
particularly distressing for girls on the spectrum. They are often bewildered
and unsettled by changes to their bodies. One girl I know of was so unhappy
about starting to develop breasts that she handed a pair of scissors to her
mother, and asked her to cut them off. She was totally serious. A girl
who began menstruation had to miss school on the first few occasions as she
found it so overwhelming. The anxiety about managing sanitary items, and the
hormonal onslaught on her already delicate emotional balance, was all too much.
I know that Libby is relatively lucky that I am reasonably ahead of the game
in this respect; I have tried to inform myself well, and learn from the
experiences of families with girls on the spectrum. (But there are times when
the false reassurance of being blissfully unaware would be more conducive to
being able to sleep.) Girls with AS may also be more prone to precocious
puberty than their peers and may experience more severe pre-menstrual (PMS)
symptoms than non-autistic girls. (Sicile-Keira, 2006,in Nicols et al.,
2009).These symptoms can involve:
Type A:
Tension, irritability mood swings angry outbursts
Type B:
Breast tenderness, swelling, upset stomach, weight gain, swollen hands and feet
Type C:
Appetite changes, cravings, feeling tired, overeating
Type D:
Moodiness, memory loss, sadness, crying spell
Not fun for
anyone but imagine how it must feel for a young woman with an ASD who thrives
on stability
(Nicols et
al., 2000, p. 119).
Fortunately,
being a syndrome, not every woman experiences all of these PMS symptoms, but
mood swings can be particularly extreme for girls with AS, and that can be very
frightening for them. The physical pain of menstruation may also be
overwhelming, especially for someone with sensory hypersensitivity, and can
have implications in terms of functioning at school and work.
In
connection with the issue of weight gain during puberty, it is not uncommon for
girls and young women on the spectrum to be anorexic, as this offers an
opportunity to gain some control over their immediate environment (i.e. their
own bodies), and to slow or even reverse the otherwise unstoppable progress of
puberty. Anorexia predominantly affects girls, and it is believed that twenty
percent of anorexia patients are on the autism spectrum(Treasure, 2010).
Treasure explained that the effect of starvation on the brain can reduce the
set-shifting ability of girls who are already attracted to the rules and systems
involved in being anorexic, so the cycle becomes ever harder to break
(Laurence,2010, n.p.)
Some people
view anorexia as simply a diet gone too far or a desire to resemble a
celebrity, rather than a serious mental health issue. I personally know two
women who are or have been anorexic; one is my sister's best friend, and one is
a very close friend's niece. Both are intelligent women, neither has been
diagnosed with AS, but both became anorexic in response to emotional trauma;
childhood abuse in one case, and her parents' divorce in the other.
My sister's
friend managed to break the anorexic cycle when she became a mother, but after
her marriage failed, her teenage daughter began self-harming, and displaying
quite a lot of signs that she may have AS. She is under her local CAMHS; I hope
that they will pursue this. My friend's niece has been in and out of The
Priory for years, and has been very close to death several times; the effect
of anorexia on her and on her family is devastating. She is also tall.
Apparently tall girls are more at risk of anorexia, depression and teasing
(Nichols et al., 2009). Libby is on the 98thpercentile for height(i.e. out of
every 100 girls her age, two are taller, and 97 are shorter.)(Sometimes I wish
I had not learned so much; it could be counter-productive if I worry myself
into ill health. I have already cracked two teeth and developed
temporo-mandibular joint disorder (TMJ) from stress-related grinding of my
teeth at night.) Another disadvantage of Libby being so tall is that people
assume she is about thirteen, and therefore expect her to be far more mature
and socially able than she is. And it is another way in which she stands out
among her peers.
Self-
harming is another area where girls with AS seem to be disproportionately
represented (Ashton-Smith, 2013). It can seem like a form of control over one's
emotions, as the physical pain temporarily replaces the emotional pain of being
bullied, ostracised, lonely and anxious. The publicity surrounding the recent suicide
attempt and apparent self-harming of Michael Jackson's teenage daughter Paris
has drawn attention to the alarming rise in the number of girls who self-harm.
Many elude the attention of medical or mental health services, and many have
issues that are not as a result of being on the spectrum. As widely reported in
the media, many children in the Western world are unhappy mainly due to lack of
input from time-poor, or disinterested parents, focus on material possessions,
and pressure to live up to the image and lifestyles of celebrities, in their
own environment, and on social networking sites. But girls on the spectrum are
additionally likely to feel excluded and the stresses are often compounded by
the emotional exhaustion of using social echolalia to try to fit in. They are
less likely to have friends to turn to for emotional support. Ashton-Smith
(2013, n.p.) describes the potential effects of AS girls usage of social
echolalia as follows:
Girls tend
to be more tuned into watching social skills, and using social echolalia to
give the superficial appearance of social understanding. If we want to relate
with someone, we tend to act more like them...But to lose themselves in the
emulation of the identity of another person, however talented, popular, kind or
clever that person may be, is to lose touch with oneself, and this can be very
damaging, and lead to profound psychological problems, and also to self-harm.
Girls on the spectrum are very prone to depression.
Yaul-Smith
(2008) in Nichols et al. (2009) writes of the social exhaustion experienced
by females on the spectrum, as a result of the strain of pretending to fit in,
using intellect and effort, rather than instinct and inclination. Simone
describes the debilitating effect of the expectation to engage in social
chit-chat which to many AS girls has no obvious function. Social discomfort can
cause adrenaline overload, which in turn can lead to stomach problems, or
sometimes to selective mutism. In this respect, Simone writes that: ...our
challenges are very real, but not always obvious to others. Therefore our
behaviour is not understood. (Simone, 2010, p.13)
Diagnosis
Before a
child is referred for an AS assessment, they need to have been identified as
possibly having AS by a teacher, SALT, general practitioner or paediatrician.
Setting aside influences such as funding, politics, or the ethos of an
individual school, which can affect the chances of this happening, a child
needs to stand out in a way that will alert the teacher or practitioner to the
possibility that they may have autism. As girls are often so good at masking
their traits, and are usually less disruptive, teachers are less likely to
refer them than boys. Girls are often regarded as too affectionate to be on
the spectrum (Nichols et al., 2009, p. 21), lack of eye contact is often
dismissed as being demure, and girls tend not to be so inflexible in their
behaviour as boys.
Parents too
can be reluctant to press for assessment and intervention if the child seems to
be managing at school (Attwood, 2006). Nobody particularly wishes for their
child to be labelled as SEN, as despite better understanding these days,
there are still those who will stigmatise. In our case, a referral to CAMHS was
made by a SALT, partly because Libby was so impulsive at ages three and four.
However, a paediatrician we saw in regard to her allergies told me Look at her
she's fine! If anyone is going to refer her it will be us and we're not going
to!At the time, I felt relieved, as I perceived him to be a superior authority
to the SALT. But his proclamation was based on his having watched her playing alone
with some toys in his room for about five minutes, and I had a lot to learn
(as did he).
Of those
girls who are referred, the next hurdle to receiving an appropriate diagnosis
is what I see as an unfortunate historical bias of the diagnostic tools, and
the consequent tendency of many practitioners to diagnose what they are used to
diagnosing i.e., mainly autism in boys. In my view, this is because,dating back
to the time of Kanner and Asperger, it was predominantly boys who were
identified for diagnosis, and this has shaped the diagnostic tools in a way
that does not allow for the often more subtle presentation of girls. I consider
that the inherent underlying gender differences are overlooked by the Autism
Diagnostic Observation Schedule (ADOS), the Autism Diagnostic Interview (ADI)
and the Diagnostic Interview for Social and Communication Disorders (DISCO).
Girls are usually naturally more sociable and affectionate, with less rigid
behaviour. The same is true of the DSM and ICD.In regard to the, so-called,
Gold Standard ADOS, Nichols et al.(2009, pp. 21-22) found that:
girls who
presented with more subtle ASDs were eventually able to answer questions about
social situations, social communication and friendships, that similarly
high-functioning boys would be less able to answer. However, the answers tend
not to come naturally or quickly; it often takes these girls longer than normal
to process information and then respond. You can imagine the difficulty they
would have keeping up in a conversation with a group of chatty teenagers at
school! The answers themselves that the girls provide also seem to reflect a
more surface-level understanding rather than the depth of social comprehension,
cognition and awareness observed in typically developing girls.
Gould says
that many professionals are not up to speed in understanding how girls
present. (Hill,2009, n.p) As a result, girls can be subjected to lives of such
misery that many resort to extreme self-harm and anorexia (Hill, 2009, n.p.).
Bazelon quotes Skuseas saying There is no doubt in my mind that the way we
have defined autism currently biases our assessments strongly in the direction
of identifying a male stereotype, and that girls of higher intellect are less
likely to be diagnosed because of their greater ability to hide their
difficulties in the context of a fairly short observation process.
(Bazelon,2007, n.p.)
In April
2013 I ran an online survey asking for information from people with AS, or who
had children with AS (Appendix A) I wanted to investigate the experiences of
females relative to males in terms of how hard they found it to obtain a
diagnosis, whether they had been misdiagnosed, and to what extent they thought
having a correct diagnosis of AS made a difference to their self-awareness, and
the support that they received.. From this survey, as well as from the
literature, I have compiled the following quite shocking list of spurious diagnoses
that females commonly received prior to a diagnosis of AS:
Psychosis
Schizophrenia
Pathological
Demand Avoidance
Neurosis
Obsessive-Compulsive
Disorder
Personality
Disorder
Anxiety
Disorder
Social
Phobia
Sensory
Integration Disorder
Sensory
Processing Disorder
Eating
Disorders
Behavioural
problems
Attention
Deficit Disorder
Attention
Deficit Hyperactivity Disorder
Anxiety
Depression
Language
Disorder
Mood
Disorder
Generalised
Anxiety Disorder
Oppositional
Defiant Disorder
Post
Traumatic Stress Disorder
Nervous
Breakdown
Learning
Disability
Bipolar
Disorder
Tourettes
Syndrome
Nervous
Stomach
Multiple
Personality Disorder
Dysgraphia
Behavioural
Problems
Sophomoritis!
(Only in the USA)
The
following are some of the responses to the survey:
I was always
told that men had Asperger's not women. Even though I could not make eye
contact, and had all the other symptoms, the fact that I was a woman and
laughed and talked a lot denied me the diagnosis.
There is
very little understanding of how autism presents differently in adults, who've
had a lifetime to learn coping strategies and learn to 'pass'. Also NO
understanding of how autism presents differently in females.
It was
nearly impossible to find anyone who would diagnosis me. Once I found someone I
learned of many resources. But until then it was like the best kept secret. I
don't think especially woman (sic) know where to go.
It was a
long uphill battle. People said that I COULDN'T be on the spectrum because I
was "too high functioning", "a girl", or "too
social" or "too intelligent". I am so glad I finally understand
myself now, though.
Logically,
there must be many other misdiagnosed (and possibly also wrongly medicated)
women who have yet to be correctly diagnosed. Gould believes that up to 42% of
females are misdiagnosed (Gould, 2011), and Simone explains why it is so
important to have a correct diagnosis:
the naming
of something will give it more power. Naming is a powerful thing -
Asperger's Syndrome aligns us with a group, it gives us a backdrop and a
catalogue of information. So many females don't have the name; Asperger's
manifests itself differently in girls, often resulting in multiple misdiagnoses
(Simone in
Clark, 2010, p. X)
Attwood
(2000), Ehlers and Gillberg (1993) and Wing (1981) all acknowledge that many
girls and women with AS are never referred for assessment and diagnosis for AS,
or are misdiagnosed, and are therefore missed from statistics and research.
Many girls and women do not meet diagnostic criteria as the criteria are based
on the behavioural phenotype of boys so there exists a critical need for
diagnostic criteria to reflect the female phenotype(Marshall, 2013). It is
profoundly unsettling that: So many women tell us that trying to get a
diagnosis feels like an insurmountable hurdle and they have to fight tremendous
battles to get the help support and services they desperately need. (Lever,
2010, in The Independent, Feb 2010)
Lai, who has
worked on a recent study of gender differences in autism at the The University
of Cambridge Autism Research Centre, recently stated:
we should
not blindly assume that everything found for males or from male-predominant
mixed samples will apply to females there really needs to be more research and
clinical attention toward females 'on the spectrum' (BBC News, August 2013)
Additionally,
the mental health and life chances of women on the spectrum are further
hampered by what Gomez de la Cuesta & Mason (2002) refer to as the
double-glazed glass ceiling, i.e. women on the spectrum face the challenges
and prejudices that women still face in the world of employment, and are
additionally hampered by the difficulties faced by many people on the spectrum
in terms of being able to deal with the social demands of the workplace.
Support
solutions
Holiday
Willey entreats that those on the spectrum should seek People who share the
same interests, beliefs, morals and general lifestylesjoin special
interest clubs pets can bring out the best in all kinds of people and because
they can bring strangers together (HolidayWilley,1999, p. 57). Libby currently
regularly takes part in martial arts classes, trampoline, and Irish dancing. In
each of these activities she has built up a small group of friends, both girls,
and boys, and they are mainly mutually supportive. Each of these activities
builds her self-esteem, as she moves through the ranks; particularly in Irish
dancing she has absolutely amazed us by dancing out on St Patricks night and
other occasions in local venues, to deafening applause. We hope that the
knowledge of martial arts will help her protect herself when she is of an age
to be out of the range of my current helicopter parenting.
Wagner
writes that:
...teachers
and parents should investigate and implement peer programming4 in order to
build socially appropriate behaviours, improve chances of acceptance, better
the possibility of inclusion, increase self-esteem, and lessen the chances of
depression.
4 The idea
behind peer programming is to engage a small, select group of suitably
motivated, emotionally mature and reliable peers to support the child with AS,
both in and out of class, protect them from bullying, model appropriate social
interaction, and provide a potential relationship link to the wider peer group.
(Wagner in Attwood, 2006, p. 23).
To minimise
the amount of bullying to which they are likely to be subjected, Iland
advocates that females with AS need to learn whom to avoid. She also warns that
Disclosing can lead to many different outcomes ... A girl with Aspergers
should be very sure she can trust a person before disclosing to him/her.
(Attwood, 2006, p.48) This is something that I have very mixed feelings about.
Walker quoted her friend Sam: Aspergers is difficult. You don't really fit in
the normal world and you don't really fit in the disabled world. You sort of
fall through the middle (Walker, 2012, p. 56). So for me, there is the dilemma
of whether Libbys life might be made easier or harder by disclosure to the
wider community. As this is not a process that can be reversed, I think it is
extremely important to be very sure first.
Some
children we know have prepared PowerPoint presentations to explain to their
classmates about AS, and how it specifically affects them. This has been done
with the help of staff from the local authority Additional Needs Services. As
we actually live in a neighbouring borough, I used my contacts to access their
material, and staff from school and the LEA have helped Libby formulate a
PowerPoint presentation of her own. She did enjoy doing this, and I am adamant
that I do not want her to grow up thinking that AS is an embarrassing secret
that she should have to hide. However, by the end of year five, she still has
not presented her PowerPoint to the class as planned, partly due to Libby
understandably having cold feet about it. It is a huge thing for her to do,
and it could backfire, so I am not really sure about it anymore.Maybe we should
continue with more selective disclosure to trusted people, until she is old
enough to really understand the possible ramifications. Either way, I think
that it has been a very positive and self-affirming process for her thus far.
Libbys
current mantra is I am half tomboy so she scorns butterfly hair accessories,
but likes doing fancy hairstyles, likes (and is very good at) Irish dancing,
but also plays more tom-boyish games in the school playground. I remember my
childhood being similar, but there was no pressure on young girls to be the
next Taylor Swift or Rihanna (or even Lulu!) in those days. Simones advice is
Try to find friends who will accept you as you are, rather than trying to hang
with the cool kids (Simone, 2010, p. 32), and I would totally agree with that.
Simone also says that most if not all Aspergirls have similar
perceptions about gender...Mostly it manifests as frustration, and disinterest
in society's expectations of what being female means. As usual, we march to our
own drum(Simone, 2010, p. 62).
I will be
encouraging Libbys current primary school, and her intended secondary school
to implement girl-friendly social skills classes, as advocated by Gould and
Ashton-Smith (2011) and to make sure that she knows what to do at break time,
and how to report when she feels intimidated. They also recommend the use of
role play, drama and video to convey socially appropriate behaviour. Simone
observes Scripts are helpful. The little niceties that Aspies dont like,
because they seem shallow and insincere, are actually very helpful like
saying, Hi, how are you? (Simone,2011, n.p.)
As Libby
grows older, she will be able to access various AS forums, such as Wrong
Planet, Aspergers Support Network, and the Aspergers Awareness Community.
Although there are currently more males represented by and contributing to
these sites, the balance is changing with time, so hopefully she will feel more
connected with other youngsters who can relate to her. But that will also
require careful supervision through her teens as there are a lot of internet
trolls out there who bully females, and people with autism (BBC News, 2013,
n.p.).
Conclusion
As
previously stated, I do not imply that all the difficulties relating to having
AS are apportioned to females. I know boys whose experiences have been more
like the story of Sophie, in terms of not being recognised at school, diagnosed
or helped, until too much precious time has been wasted. However, my survey
received 150 responses from most of the English-speaking world, and it did
starkly highlight the problems which seem to particularly affect females.
Nichols et
al. (2009) point out that consideration of gender differences in autism are
about two decades behind the recognition that has been afforded to the
understanding of ADHD. Possibly that is partly because ADHD tends by definition
to be disruptive, and therefore prompts more attention to both sexes from
teachers, parents and health professionals.
Below are
further quotations from some of the responses that I feel speak most
emphatically about the situation of females with AS, and articulately
encapsulate many of the issues discussed above.
If I had
been diagnosed when I had the breakdown in 2003, at the very latest, it might
have saved my marriage, my children and my home. My husband and I always tried
to get help/counselling but were just pushed from pillar to post with no one
realising what the root cause of my problems were. After my breakdown my
husband could not take any more stress caused by me and our marriage broke down
irretrievably. There is also still a very big problem with the stereotyping of
autism/Aspergers with diagnosticians still not recognising that women and girls
on the spectrum present differently from males.
As a result
of the diagnosis being missed, Kenda spent almost 2 years in foster care for
supposed abuse springing from unexplained bruises. Kenda often ran into things
without telling me because of certain insensitivity to pain Most professionals
here are only educated about severe autism and have more trouble recognizing
the high functioning type that my daughter has.
I suffered
with an eating disorder as a teenager which I hid very well as it wasn't a need
to be thin as much as a need to control myself and feel more accepted by my
peers. I had selective mutism and was also agoraphobic to a degree - I went to
school and came home following a stupid remark by a local girl that I took
literally and was afraid for my safety outside alone, aged 13-16yrs. I've had a
knife to my throat - been hauled into a car and given a date rape drug during
my early 20's after misunderstanding others intent.. If I had a diagnosis I
know that I would feel worthy in the human race again and my family would
hopefully no longer judge me so harshly. I am 38 and only this year after
realizing my 7 year old is on the spectrum did I find out about Aspergirls and
it was more of an explosion than a light bulb moment for me! I have no idea of
the help I would receive but to be understood would be a dream come true.
She is now
in year 3 at school and is the typical unassuming quiet shy anxious girl at
school. Her school thinks she is just a little bit asd because she does not
display at school like the boys on the spectrum do. They have no concerns for
her at all yet on the inside she is not coping. So in our case we have an early
diagnosis against trend but now find ourselves in the position of her acting
like all the missed girls and nobody in the school system having any
understanding of this
I was
diagnosed with Social Anxiety Disorder in 2000 as an explanation for severe
depression and suicide attemptI sought autism-specific testing in 2013 and was
immediately diagnosed with AspergersI have spent a great deal of my life not
understanding why I felt different and had a difficult time dealing with
people. Had I been properly diagnosed while in school, I may have developed the
skills necessary to help me cope with life outside of academia...I think I went
undiagnosed during school because I did well grade-wise and was not a
discipline problem, but I struggled a great deal socially and was labelled
"shy," so no one thought anything more about it.
I took my
daughter to CAMHS for assessments and various stages form (sic) age 5, we were
told by a psychiatrist when she was 14 that she couldnt have Aspergers because
she can make eye contact. My daughter went through hell growing up and it makes
me so angry that help was not there when it should have been for us
No diagnosis
meant school were reluctant to listen to our concerns. Therefore she struggled
with homework and the social aspect of school which resulted in bullying from
peers and ended with a move to a different school in year 6 as we got her
diagnosis.
I did not
receive much help at all, I was introduced to a few other (sic) teens with a
diagnosis, none of which wee(sic) female, which made my diagnosis feel even
stranger to meAfter diagnosis many people egteahers(sic) tried to get my
diagnosis retracted due to the fact I was a girl and this (sic) misconceptions
that girls don't get Aspergers
LISTENING is
supposed to be what NTs (neurotypicals i.e. non autistic people) are good at.
But when they become doctors, they stop doing it
These
comments are from women, or parents of girls, mostly in the UK and USA. These
are some of the countries in which most of the research into autism has taken
place over the last few decades, but none the less it is obvious from these
comments that there is still an appalling lack of understanding and knowledge.
Although we have had difficulties and stresses, and I often feel a lot of
apprehension about the prospect of Libby moving into her teenage years, I do
realise that we have things a lot better than many others. Resources are
dwindling due to the recession, and many males with AS do not receive as much
support as they need, but for females, the situation is often even more bleak,
but less recognised. While awareness is growing in some areas, I do not believe
that it generally is in most schools. And even the best clinical psychologists
cannot diagnose children who have not been referred to them.
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