Girls and women who have Asperger’s syndrome

Foreword for Safety Skills for Asperger Women by Liane Holliday Willey.

This was not an easy book for Liane to write. As I read the manuscript for Safety Skills for Asperger Women I could hear Liane's voice and feel compassion for my friend, as she described her experiences as a girl, woman, and mother that included moments of vulnerability, despair, confusion and self-doubt. Clinicians tend to focus on the positive attributes of having Asperger's syndrome, and there are many, but there are also aspects that need to be known, described by Liane as "the scary stuff" in order to, in Liane's subtitle for this book, save a perfectly good female life. Her personal explanations and advice will resonate with the reader and transform and save lives.

Why is this book needed and so valuable? Primarily, because our understanding of Asperger's syndrome is based on the profile of abilities and developmental history of boys and men. Their adaptations and behaviour can be quite conspicuous and as the male: female ratio for Asperger's syndrome is 4:1; clinicians will have greater experience identifying the male expression and reaction to the diagnostic characteristics. Girls and women who have Asperger's syndrome are different, not in terms of the core characteristics but in terms of their reaction to being different. They use specific coping and adjustment strategies to camouflage or mask their confusion in social situations or achieve superficial social success by imitation or escaping into a world of fantasy or nature. Clinicians need a paradigm shift in terms of understanding the female presentation of Asperger's syndrome to ensure earlier diagnosis and access to effective support and understanding. Liane's new book provides a greater understanding of the adversity experienced by girls and women who have Asperger's syndrome and strategies to overcome or avoid scary moments.

In early childhood, probably long before a diagnostic assessment, a girl who has the characteristics of Asperger's syndrome will begin to know she is different to other girls. She may not identify with or want to play cooperatively with her female peers. Her thoughts can be that the play of other girls is stupid, boring and inexplicable. She may prefer to play alone so that she can play her way. Her interests can be different to other girls, not necessarily in terms of focus, but intensity and quality. For example, she may collect over 50 Barbie dolls and choose not to enact with her friends from the neighbourhood 'Barbie getting married' but arrange the dolls in particular configurations. There can be a determination to organise toys rather than share toys and also not play with toys in conventional ways. She may prefer non-gender specific toys such as Lego and not seek acquisitions related to the latest craze for girls her age to be 'cool' and popular. There can be an aversion to the concept of femininity in wearing the latest fashions or fancy or frilly clothing. The preference can be for practical, comfortable clothing with lots of pockets. While boys with Asperger's syndrome can fixate on facts, and some girls with Asperger's syndrome can also have an encyclopaedic knowledge of specific topics, there can be an intense interest in reading and escaping into fiction, enjoying a fantasy world, creating a new persona, talking to imaginary friends and writing fiction at an early age. Another escape is into the exciting world of nature, having an intuitive understanding of animals, not people. Animals become loyal friends, eager to see and be with you, with her feeing safe from being teased or rejected and appreciated by her animal friends.

There may be single but intense friendships with another girl, who may provide guidance for her in social situations, perhaps in a benevolent way and in return, the girl with Asperger's syndrome is not interested in the 'bitchy' behaviour of her peers and is a loyal and helpful friend. Unfortunately, sometimes the girl who has Asperger's syndrome is vulnerable to friendship predators who take advantage of her naivety, social immaturity and longing to have a friend. Inevitably there will be times when she has to engage with other children and she may prefer to play with boys, whose play is more constructive than emotional and adventurous rather than conversational. Many girls and women who have Asperger's syndrome have described to clinicians and in autobiographies how they sometimes think they have a male rather than a female brain, having a greater understanding and appreciation of the interests, thinking and humour of boys. The girl who has Asperger's syndrome can be described as a 'Tom Boy' eager to join in the activities and conversations of boys rather than girls.

When boys who have Asperger's syndrome make a social error, their response may be to become agitated and their clumsy and immature social play skills are quite conspicuous and annoying to peers and adults. There is recognition that this child needs an assessment and intervention. Girls are more likely to apologise and appease when making a social error. Peers and adults may then forgive and forget, but without realising that a pattern is emerging. However, the girl with Asperger's syndrome is increasingly recognising her social confusion and frequent faux pas. She may react by trying not to be noticed in a group, for others to be aware of her social confusion, preferring to be on the periphery of social situations. However, girls with Asperger's syndrome can be avid observers of human behaviour and try to decipher what they are supposed to do or say. Another strategy to having problems with social reasoning is by being well behaved and compliant at school so as not to be noticed or recognised as a different. A girl with Asperger's syndrome may suffer social confusion in silence and isolation in the classroom or playground but she may be a different character at home, the 'mask' is removed, and she uses passive aggressive behaviour to control her family and social experiences.

Another constructive adaptation to the characteristics of Asperger's syndrome used by girls and women is to use imitation or imagination. The girls may identify someone who is socially successful and popular, either from her peers or a character in a television soap opera and adopt that person's persona in mimicking speech patterns, phrases, body language and even clothing and interests using a social script. She becomes someone else, someone who would be accepted and not recognised as different. She learns how to act in specific situations, a strategy that Liane found so successful that people thought her social abilities were intuitive and could not believe this was an artificial performance. Girls and women who have Asperger's syndrome can be like a chameleon, changing persona according to the situation, but no one knowing the genuine persona. She fears that the real person must remain secret because that person is defective.

Some girls may not seek integration but escape into imagination. If you are not successful with your peers, you can try to find an alternative world where you are valued and appreciated. The girl may identify with a fictional character such as Harry Potter or Hermione Granger, who faces adversity but has special powers and friends. If she feels lonely, then imaginary friends can provide companionship, support and comfort. There can be an interest in ancient civilizations to find an old world in which you would feel at home, or another country such as Japan where you would be accepted and of like mind or even another planet with an interest in science fiction or a special and intense interest in the traditional fantasy worlds of witches, fairies and mythology. Many typical children occasionally enjoy escaping into imagination, but for the child with Asperger's syndrome, and especially the girl with Asperger's syndrome, the reasons are qualitatively different and the fantasy world can become a means of avoiding reality and experiencing a relatively safe and successful social life.

While these coping and camouflaging mechanisms can mask the characteristics of Asperger's syndrome, such that the girl with Asperger's syndrome slips through the diagnostic net, there is a psychological cost that may only become apparent in adolescence. Observing and analysing social behaviour and trying not to make a social error are emotionally exhausting. Adopting an alternative persona can lead to problems of self-identity and low self-esteem regarding who you really are. Both of these coping and camouflaging strategies can contribute to a clinical depression in a young adult. Girls and women who have Asperger's syndrome can spend many years searching for an explanation of why they are different, questioning whether they are defective or demented and why they feel so depressed.

People who have Asperger's syndrome are prone to excessive anxiety, especially performance anxiety in social situations. This can contribute to selective mutism, being too anxious to speak in a group situation. A well known method of alleviating anxiety for typical children and adults is to develop routines and rituals and to focus on a special interest that can act as a 'thought blocker' to act as a shield for intrusive anxious thoughts. A girl with Asperger's syndrome may develop routines and rituals around food and a special interest in calories and nutrition that under the increasing stress associated with adolescence, develops into the signs of Anorexia Nervosa.

From my own extensive clinical experience and reading autobiographies, women who have Asperger's syndrome can be extremely sensitive to the emotional atmosphere at a social gathering. There is an almost 'sixth sense' for feelings within others of antagonism, fear and despair in group situations. When a girl with Asperger's syndrome who has emotional sensitivity to the negative moods of others has also been bullied and teased by peers and rejected or 'betrayed' by friends, there can be a suggestion of the characteristics of Borderline Personality Disorder. Being a 'Tom Boy' in childhood, not being interested in fashion and femininity, make up and perfumes, as well as appreciating the logic of the male brain can lead to concerns regarding sexuality and gender identity. Social immaturity and naivety can also lead to vulnerability to sexual predators and a risk of sexual assault.

Liane used imitation to become socially successful, described eloquently in her autobiography Pretending to be Normal. This strategy can lead clinicians to suspect characteristics of Multiple Personality Disorder. An escape into a fantasy world and imaginary companions can lead to suspicions that signs of schizophrenia could be developing in an adolescent girl with Asperger's syndrome. Having a very sensitive sensory system, for example hearing sounds inaudible to others and an emotional 'sixth sense' can lead to an interest in the supernatural which could also be misinterpreted as a sign of not being in touch with reality. Thus an adolescent or young adult with Asperger's syndrome may only come to the attention of clinicians for the diagnostic assessment of a secondary mood or personality disorder or psychosis. A detailed developmental history by a clinician experienced in the clinical presentation of adolescent girls with Asperger's syndrome may confirm the characteristics of Asperger's syndrome. At last an accurate diagnosis and explanation, but she has missed the opportunity for understanding, guidance and support in her earlier childhood.

Liane wrote one of the first autobiographies, Pretending to be Normal and she has now written one of the first books to describe how to understand and help a girl or woman who has Asperger's syndrome. She "figured out how to play the neurotypical game". It was not easy and there were scary moments but we need to know about those moments and listen to her wisdom to reduce the likelihood of other girls and women having the same experiences. Her experiences and abilities changed with maturity and she now has an insight and perspective and constructive coping strategies that will be appreciated by girls and women who have Asperger's syndrome but also by all those who support and love them.