Does the different presentation of Asperger syndrome in girls affect their problem areas and chances of diagnosis and support?

Volume 1. No. 4

Does the different presentation of Asperger syndrome in girls affect their problem areas and chances of diagnosis and support?

 

May 6, 2015

By Elizabeth Hughes

 

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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