Autism and women

‘’In the autistic individual the male pattern is exaggerated. Maybe there are no autistic girls. We just don’t know’’ (Asperger 1944)

Before I begin I would like to make it clear that the core features of autism are the same regardless of gender, and that the only thing that, on average, varies between men and women are their coping strategies and reaction to being different. All people with autism find it difficult to relate to, and communicate with, other people. They usually find change difficult, and often develop intense interests, routines and obsessions. Sensory difficulties are also extremely common.

Diagnosis, research and statistics

First of all I would like to provide you with a brief historical perspective.

As highlighted in the quote taken from Dr Hans Asperger, the original case studies of autistic people were all male. Furthermore, in 2006 Dr Ami Klin described autistic girls as ‘’research orphans’’ because the vast majority of research was carried out on these diagnosed boys. Consequently diagnostic tools are gender biased in favour of male characteristics, which has meant that you are far more likely to receive an autism diagnosis if you are male. Indeed, some studies have shown that as many as 10-15 boys to every 1 girl get an autism diagnosis at the Asperger end of the spectrum, and a 2012 survey carried out by the National Autistic Society revealed that 50 per cent of boys were diagnosed with autism by the age of 11, compared to only 20 per cent of girls. However research is now showing that there are probably just as many girls with autism as there are boys, but most of them are undiagnosed.

It was only between the years 2000 and 2004 that published research on gender differences in autism began to emerge. Therefore, all findings on gender differences at this stage are preliminary and open to review.

 

Stereotypes and differences in autism presentation

The stereotype or general image we have of autism is largely modelled on the male stereotype in general. Historically men have been described as logical, unemotional, aloof, independent, and as having interests that are technical, object or machine based. Conversely the female stereotype includes characteristics such as empathy, creativity, imagination,   and good social and communication skills.  Therefore, when doctors first discovered and described autism as a clinical entity, they noticed parallels between certain autistic characteristics, most notably impaired social skills, and the more general male stereotype. This has meant that, right up until the present day, professionals often turn a blind eye to autistic behaviour in women, even when the girl has very severe and obvious symptoms.

It has long been widely acknowledged that girls and boys are socialised differently, and that this can affect male and female behaviour and interests.  For example, males on average show more externalising behaviour when they are faced with difficulties, such as hyperactivity and aggression, whereas girls are socialised to be compliant, passive, and socially agreeable. Autistic people are exposed to these same pressures and expectations, and this means that autistic behaviour can often appear different in girls and women than it does in boys and men.

I will now outline how these differences in presentation can be expressed.

Behaviour

Girls with autism often feel a greater need than boys with the same condition to mask or repress their overt autistic behaviour, such as hand flapping or jumping, and learn to blend in by bowing to the female expectation to be social. They are more likely to internalise their symptoms, which might be expressed as anxiety or shyness. For example, when I was at school I never had overt meltdowns but I regularly shut down. This meant that I day dreamed and passively avoided doing my work instead of causing any major trouble. Nevertheless teachers were concerned because they identified that I had learning difficulties.

When I was 9, an Educational Psychologist was called into the school, and carried out an in depth assessment of my learning profile. The report opened by saying the following:  ‘’Anna was formally raised as a cause for concern by her class teacher, in the Autumn term of 1996. Anna’s reading accuracy was said to be in advance of her chronological age but her reading comprehension was almost two years below her chronological age. Anna also had spatial awareness difficulties. She had some interaction problems, particularly with her peer group, preferring to play with much younger children. Eye contact was poor and self- confidence low’’.  It is interesting to note, however, that the Educational Psychologist observed that during the subsequent testing my ‘eye contact was felt to be good’’. It is likely that in the highly structured one to one atmosphere of the test environment, I felt more comfortable and therefore more able to make eye contact. The test revealed that I had strong verbal skills, which were high average, but had severe difficulties with visual perception and sequencing, organisation, maths and numeracy. This uneven profile, or being very advanced in some areas while severely behind in others, is very common in autism. The report  also emphasised that I lacked confidence and had nervous anxieties, such as washing my hands repeatedly at home and having worries about getting dirty. Significantly the report said that I still seemed ‘’like a little girl, both physically and emotionally’’. In other words, as is is the case for many girls with undiagnosed autism, my difficulties were explained away as being the result of  immaturity and shyness.

Sadly the school failed to adequately support my difficulties, and so I suffered in silence and became invisible to the system, probably because I did not make a huge fuss. Furthermore, I was not aloof or completely alone, and although I had difficulties making friends, I did try and initiate contact with other children. However, I  did so in too forceful a manner, or I said inappropriate things because of difficulty with social skills. It is, in fact, common for girls, on average, to be more socially motivated than boys and even to have one friend. I finally made a friend with another girl in my year group when I was 9 years old, but the quality of my interaction was different because I was very possessive and got very upset when anyone one else wanted to play with her. Consequently, the friendship did not last.

Things became even harder at secondary school because socialising became more focused on small talk, feelings and relationships. Boy’s social activity is often focused on activities such as computer games, and there is generally less emphasis on conversation. Therefore girls with autism face the double whammy of having the same social impairment as boys with autism, but having the extra difficulty of having to navigate the incredibly complex female teenage social world.  Initially I tried to blend in by being quiet and nice, but I did not have the social skills to do this successfully, and one girl after another rejected me because I was too ‘clingy’ or did not have enough to say.  Eventually I gave up trying and spent lunch times locked in the toilets or hiding away in an empty classroom.

It was also during my teen years that I first learnt how to actively camouflage my autistic symptoms by learning compensatory strategies.  I did this because I wanted to avoid ridicule and not draw attention to my differences. This meant that I studied the behaviour of the more popular girls in my class, and imitated the way they spoke. Gradually I used my intellect to absorb their personas into myself, and through continual practise I eventually learnt how to pull off a more or less fluent conversation with another person. Research has shown that this behaviour, which has been given the name social echolalia or advanced, mirroring, is more common in girls with autism than it is in boys. However, because the compensatory behaviour can be so convincing, it can be hard for other people to spot the underlying autism. Indeed, professor Simon Baron Cohen has said that ‘’if you were just judging on the basis of external behaviour, you might not really notice that there is anything different about this person’’, and that ‘’it relies much more on getting under the surface and listening to the experiences they’re having rather than how they present themselves to the world’’.  What is important to understand is that masking and compensatory behaviour is incredibly exhausting and draining because it involves the intellect instead of social  instinct, and so feels mechanical and unnatural. It can therefore  lead to identity confusion, underestimation of needs, poor self-esteem, and severe mental health problems.

Interests

Research has identified that interests is the main area where males with autism, on average, differ from females. Historically clinicians looked out for very eccentric and peculiar interests in parts of objects or things like lights, street signs, or drainage facilities. Also the male autism stereotype emphasised the rote repetition of scientific facts in a monotone voice, with little interest in creative activities such as reading fiction or playing imaginatively.For example, one of  Simon Baron Cohen’s autism screening questionnaires asks the recipient male centric questions such as whether ‘’when travelling by train, you often wonder exactly how the rail networks are coordinated’’  However, research from great Ormond street has shown that because of gender differences, ‘’girls obsessional interests are (often) centered around relationships and people’’. A girl with autism might have age appropriate interests in, for example, horses, fashion, makeup,   dolls, celebrities, and reading fiction.  Yet although the subject might be typical, the intensity of the interest is what sets the autistic girl apart from her typical peers.

For example, all my interests have been socially focused. As a child I was obsessed with food and what other people were eating.  At school I memorised what every child in my class had to eat for lunch. I was also obsessed with other girls. I collected leaflets and cut out photographs of girls, which I stuck on a piece of paper, and then I wrote an imaginary story about that girl’s life, which mainly focused on food and her appearance. I was also obsessed with the Malory Towers girl at boarding school books, which I memorised off by heart. I loved the different character portrayals and was inherently interested in the lives of other people, real or fictional.  But my biggest people based obsession of all was with the actress Kate Winslet, who I was interested in for a decade, between the age of 11 and 21. I watched and memorised all her films, watched all her interviews, collected every single Winslet picture, and spent hours learning everything there was to know about her life.

My biggest people based obsession of all was with the actress Kate Winslet. I watched and memorised all her films, watched all her interviews, collected every single Winslet picture, and spent hours learning everything there was to know about her life. It was through Winslet that I learnt many social skills and how to camouflage my autism.

After Winslet had a baby I became extremely interested in child development. I read parenting magazines from cover to cover. I also followed people with babies down the high street, and I took detailed notes in my baby spotting diary, as if I were a child psychologist examining a child in a laboratory. If I were a boy going train spotting and obsessively looking at those rail networks that Simon Baron Cohen mentioned, my interest might have appeared more characteristically autistic. But because being interested in babies is considered quite common in women, the interest was less noticeable. Furthermore, I was careful to mask my interest when out in public, and so I did not pursue the interest in a way that would draw attention to me.

Likewise, when at school, I did not lecture people about my interests, and I simply kept quiet. This might partly explain why the school did not raise the possibility of me being autistic to my parents. But when I got home I talked about nothing but Winslet and babies, which concerned my parents enough for them to eventually suspect autism.

The effects of gender differences and late diagnosis

Because it is the rule rather than the exception for girls to receive a very late diagnosis, they often have no way of explaining themselves to themselves, and no access to the support and positive sense of self that they need in order to prevent mental health problems. It is common for individuals without a diagnosis to accept the explanations that other give them for their difficulties. They are often labelled as rude, mean, uncaring, shy or lazy, and this means they might blame themselves for their failings, and believe that they are worthless. Moreover, because people assume that a woman will be naturally social and emotionally responsive, the fact that she struggles in these areas can make the girl with undiagnosed autism feel as though she is not a real woman. It is also common for undiagnosed women with autism not to suspect autism in themselves because of the assumption that it is a male condition. For example, my dad first suspected that I had autism when I was 12 years old, but because of my limited understanding, the image I had in my head of what autism looked like was a man with no empathy and an obsession with maths and computers.  I therefore got very angry whenever autism was mentioned. Instead I worried that I might have a personality disorder or that I was a horrible person with no empathy or feelings. My lack of confidence and stress meant that my Obsessive Compulsive Disorder became very disabling, as it was my attempt to exert some control over my life.

It is very common for women to first be diagnosed with another condition instead of autism. The neuroscientist Francesca Happe calls this diagnostic substitution or overshadowing. What this means is that they get given a diagnosis that is assumed to be more likely in women, such as depression, OCD, or anxiety.  The woman might well have one of these conditions as well as the autism, but the underlying reason or cause of the difficulty, the autism, is often overshadowed by the presenting behaviour.  For example, when I eventually conceded that I needed help and had an assessment at the mental health team, I was initially diagnosed with OCD and social phobia.  I  only got diagnosed with Asperger’s when I asked for a referral to the adult autism team. If I had not taken that initiative, I might still lack the correct diagnosis.

Since being diagnosed with Asperger’s syndrome and finally getting the correct support, I have become more confident and can do many things that were impossible when I hardly left the house and lived an extremely isolated existence in my bedroom. Without a diagnosis I would not be standing up here speaking to you today.

Diagnostic changes

It is encouraging that the updated diagnostic and statistical manual of mental disorders mentions sex differences in autism diagnosis for the first time. It states that ‘’girls without an accompanying intellectual disability may go unrecognised, perhaps because of a subtler manifestation of social and communication difficulties’’. There is also a new specifier that symptoms may not become fully manifest until social demands exceed limited capacities, or they may be masked by learned strategies in later life’’.  The research into gender differences has also led to a reconceptualization of what autism might look like in both genders. For example, it is now widely understood that people with autism can be very empathetic, as well as often being caring, creative, and imaginative in certain areas.

The research into masking has shown how important it is not to ignore the often painful, inner realities of living with autism. A good quote is that mild autism does not mean that I experience autism mildly, mild autism means that you experience my autism mildly. There can be a huge amount of stress and confusion within the autistic individual that is not always overtly expressed, so it is important not to get fixated on looking for obvious behavioural markers of autism.  In fact research has shown that there is no one behaviour that reliably identifies autism, and this is why it is described as a ‘hidden or invisible condition’.

Closing comments and summing up

Finally I would like to emphasise that this presentation has merely explored general trends, and autism is varied for all individuals, male or female.  Boys and men can also present with the so called ‘feminine’ profile that I have outlined, and camouflage their autism in the ways described, and these individuals have also  been historically under diagnosed. Conversely some women with autism will display the classic male profile.   Gender is just one of the many variables that can influence how autism is expressed, and personality, sexuality, socio- economic status, ethnicity, culture, co-occurring conditions and disabilities, IQ, personal experience, upbringing, and stressful life events can all interact with autism to influence behaviour and presentation.  It is therefore important to understand that once you have met one person with autism, you have quite literally only met one person with autism. Prepare to be surprised, and never assume anything.

Toastmaster project number 2

On Wednesday the 31st of August I did my second Toastmaster speech, entitled The benefits of a philosophical education. I memorised the speech off by heart. I had a brief moment of apprehension when my mind went blank at a few points in the speech, but I kept my calm and carried on. I got very good feedback:

  • Good subject and good knowledge (5)
  • Obviously well researched (5)
  • Good organisation; logical and clear (4)
  • Excellent opening (5)
  • The body flowed well, quotes were very relevant and appropriate – the right number as well (4)
  • The conclusion was excellent (5)
  • Transitions – I liked the reference to benefit 1,2 etc; maybe there could have been a couple more sign posts (4)

Good use of  minimal notes. Could use a highlighter to find place more easily. Try to have more eye contact with audience; even if you are looking above people’s heads.

Particularly liked the opening and closing; they were very strong. Good paragraphs and referred back to the opening. You left us with a personal reflection which worked well.

 

A dream

This morning I dreamt that my mum was still alive. The cancer had left her and she was back to her vigorous, red cheeked self. I told my mum how well she looked, saying, ”the colour has returned to your cheeks”. My mum then asked me for a hug, and I consented – the hug was warm and firm. We then walked off along the road and I woke up. My lips were trembling and my eyes had tears in them, but I was only half awake. In real life I shy away from hugs, but I have a secret yearning for them that was fulfilled in this dream.

An imaginary dialogue between Liberalis and Stilpo concerning the destruction of the City of Lyons by fire.

Liberalis: It is completely unfathomable! The unthinkable has happened! And so unexpected, so shockingly abysmal.  The whole of that glorious City of Lyons has been burned to smithereens. My home town, my source of comfort and safety, has left me out in  the cold wilderness, and I cannot return whence I came. I am exiled. Fortune has forsaken me.

Stilpo: Well my friend the intensity of your sorrow stems from the misplaced hope and exuberant optimism that has not allowed for all potentialities. If I may, I would like to offer you these words of wisdom: never forget that ill fortune may strike at any time. All things contain the seeds of their own destruction. Nothing  external to you lasts; change is the one constant, and not all change is favourable. This has to be accepted with calm resignation for the undiscriminating hand of fate is firm and unyielding. Prepare yourself, meditate on all the potential outcomes of human existence so that nothing can take you by surprise. For a prepared soul will surmount all eventualities with equanimity and poise.Everything you need to be happy can be found within you, a stable current of virtue, which ultimately means you have lost nothing.

Death

I am surprised by how calmly I have dealt with my mum’s diagnosis of terminal lung cancer and subsequent death. She was diagnosed with cancer in March 2016. Truth be told I was not in the least bit shocked when I found out the news. I had just come back home and overheard my dad chatting on the phone to, I later discovered, a Macmillan nurse. My dad wryly joked to the nurse that perhaps it would  not be such a good idea for him to listen to Mahler, and that, instead, David Bowie would be a better choice of music. I immediately grasped the connotations of this remark  before I knew the exact purpose of the conversation. As soon as my dad replaced the receiver I asked him what was ‘going on’. ”They think mum has cancer”, he  replied in a matter of fact tone. ”Cancer?” I replied. ”She is not going to die is she?”. ”Yes, she might do”, my dad honestly answered. I did not experience any emotion. Many people get cancer, I told myself, and it can be cured these days with the latest medicine. It is not necessarily a death sentence. I wondered what cancer it was. I instinctively suspected throat cancer because my mum had had this persistent cough since November 2015. When she spoke her lips curved downward as though she was having a stroke, and  and they were a dark shade of purple. She had been looking increasingly wizened and frail, but I had put it down to stress. I think, though, that deep down I knew something was not right, hence the lack of shock when I found out the news.  Upon further questioning I  found out from my dad that they thought it was lung cancer. I told him I thought this was unlikely. After all, lung cancer is a ‘smoker’s disease’. My mum had never smoked or been around smokers. I took to the Internet and researched lung disease and other conditions that include coughing and breathlessness as the main symptoms. I simply could not entertain the idea that it was  lung cancer! Anyway, the diagnosis had not yet been confirmed, although a dark shadow had been detected on her lungs. We could not be completely sure what the diagnosis was until she had received her biopsy. There was still a glimmer of hope, albeit attenuated by the news that, whatever it was, could not be treated.

The final diagnosis was, indeed, very grim. My mum had terminal lung cancer, and it was the  most aggressive form of the disease: adeno-carcinoma. The cancer had spread to her spine, bones and blood. Knowing the gravity of the situation my mum refused treatment that would prolong her life but would also prolong her suffering. She was put under the care of the local hospice, was signed off sick from work for the first and last time in her life, and awaited her end. Right up to to her last weeks of existence she still went out for car rides with my brother, but could hardly walk and became completely emaciated. Notwithstanding she braved the climb downstairs to eat at the table until eventually even this was impossible, and finally she could not leave her bedroom. My dad nursed her and made up her supplemented drinks. In my mind she had already died at this point because she was no longer the fit and active person I had known. I cried, but quickly accepted the inevitable. My mum was going to die. What can you do with such an inevitable certainty? My logical brain kicked in. I can’t change this grim fate that has no rhyme or reason.Getting emotional over something that I have absolutely no control over would be a waste of energy and would be completely absurd. Even my OCD rituals could not help me  here – there was nothing to do but to continue with life and accept the laws of nature.

My mum died on Wednesday the 25th of May, at 8:30 am, in her bed. My dad was by her side. I was in the house when she died. I heard her gasps of breath and my dad’s cries of agony and despair. ”I love you Frances”, he cried, amidst her moans. I was in the bathroom. ”Shall I call an ambulance?” I said calmly, while knowing that this would be futile. I actually felt nothing. I did not even feel anything much when I looked at my mum’s dead body. Possibly I  felt a passing sensation of sadness or loss, but I cannot say for certain. Emotions are complicated and I have never understood them. If I did feel anything, it was not enough to shatter my impenetrable calm. After all, I felt well, I had things to look forward to, projects to complete. I wish my mum had not got cancer. I wish she was still alive. I do miss her. But I cannot change what has happened. My intellect is stronger than my emotions, and it speaks the  comprehensible words of logic and reason instead of the scrambled jargon of vague feeling.

I have only cried once or twice since my mum died, but each time I have to intellectually control the display of emotion. I have to think really hard about what has happened to my  mum. I have to meditate deeply on the fact her poor body gave up on her at such a young age, her suffering and loss of dignity, and then I can say to myself ”it is sad”, and tears will come. But this is all forced and I can choose to end the tears in the same manner that I summoned them up. It can feel good to cry sometimes, if only to assure myself that I do have some  capacity for feeling. I worry sometimes about my calm detachment because emotions are meant to define our humanity. However, on another level it could be argued that my equanimity is what my mother would have wanted. If she was looking down on me, would she want me to be suffering because of her death? Would it not please her to see me enjoying my interests and carrying on with  life? I hold onto this thought whenever I beat myself up for lack of grief.

Socrates’ Goods

  1. External Trappings
  • Wealth
  • Health
  • Beauty
  • Good birth
  • Power

2)  Internal Virtues 

  • Temperance (self-restraint)
  • Justice
  • Courage
  • Wisdom

Merely having ‘good’ things is not sufficient for happiness because there is a distinction between ”having” (possessing) and ”using” or applying – the latter implies activity, a ‘working on’, a creative act. It involves using the bare stuff of existence to actively create a better life as opposed to a futile and meaningless accumulation of goods. Socrates’ pupil Clinius concludes that the right use of good things is sufficient for happiness –  the application of internal virtue to the external trappings. Crucially you need to possess both the external and internal goods in order for the first set (external trappings) to be beneficial . Therefore an application of a certain attitude or intention onto the goods (wisdom or ignorance)  determines whether they are good or bad. In and of themselves, however, the external goods are indifferent, empty vessels. For Socrates, what is of supreme importance are the internal goods of virtue/character.

Bread baking

Today I made these rolls with support. I had not baked bread since school. I simply used instant yeast, strong white bread flour, warm water, and oil for greasing. I omitted sugar and salt, but they tasted good. I had two for lunch with butter and a bit of cottage cheese. My dad also had two, and said they were delicious. It was also the first time I had baked at my new flat, so I have broken the ice in terms of getting used to the kitchen.DSCN0577