Flying under the radar: Girls and Women with Aspergers Syndrome
The following article is copyrighted and may not be posted anywhere without permission from the author.
In Australia, approximately 1 in 100 children are born with an Autism Spectrum Condition (ASC). ASC is a recently defined lifelong developmental condition and affects people regardless, of age, colour, race or socio-economic status. It is now referred to as a spectrum condition, meaning that the condition affects the person in different ways, even though there are common areas of challenges across all people with Autism.
Aspergers Syndrome (AS) or High Functioning Autism (HFA) is a form of Autism, characterised by challenges in social communication and interaction and restricted, repetitive patterns of behaviour, interests, or activities, including sensory issues (DSM5, 2013).
Hans Aspergers, an Austrian paediatrician, originally described Aspergers Syndrome in 1944. He originally believed that girls were not affected. However, further clinical evidence led him to revise his statement. In terms of statistics, Kanner (1943) studied a small group of children with autism and found that there were four times as many boys as girls. Ehlers and Gillburg (1993) found the similar ratio of four boys to every girl, in their study of children in mainstream schools in Sweden.
Aspergers Syndrome appears to be more common among boys than girls, when the research is reviewed. However, recent awareness of genetic differences between males and females, and the diagnostic criteria largely based on the characteristics of males, are currently thought to be responsible for females being less likely to be identified. Attwood (2000), Ehlers and Gillberg (1993) and Wing (1981) all acknowledge that many girls and women with Aspergers Syndrome 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. There exists a critical need for diagnostic criteria to reflect the female phenotype.
Questions have been raised about the ratio of males to females diagnosed as having an autism spectrum condition (ASC), with a variety of studies and anecdotal evidence citing a range from 2:1 to 16:1. Here in Australia, I have seen a rapid increase in the number of girls and adult women referred for a diagnosis and/or support.
The following are some of the identified different ways in which girls and women tend to present from boys (Gould and Ashton Smith, 2011; Attwood, 2007; and Yaull-Smith, Dale (2008):
- Girls use social imitation and mimicking by observing other children and copying them, leading to masking the symptoms of Asperger syndrome (Attwood, 2007). Girls learn to be actresses in social situations. This camouflaging of social confusion can delay a diagnosis by up to 30 years.
- Dale Yaull-Smith (2008) discusses the ‘social exhaustion’ that many females experience, from the enormous energy it takes pretending to fit in.
- Girls, in general, appear to have a more even and subtler profile of social skills. They often adopt a social role based on intellect instead of social intuition.
- Girls often feel a need and are aware of the cultural expectations of interacting socially. They tend to be often more involved in social play, and can be observed being led by their peers rather than initiating social contact. They often only have one or two close friends and/or may find boys easier to get along with.
- Cultural expectations for girls involve participating in social communication, often made up of social chit-chat or surface-type conversation. Girls with Asperger Syndrome find this type of communication exhausting, tending to desire having conversations that have a function to them. Girls on the spectrum are also are socially confused by teasing, bullying, and bitchiness, and the teasing that often occurs at school
- Girls and women on the spectrum are generally skilled in one on one social relationships, but are uncomfortable and anxious in large groups of people.
- Girls may have great difficulty in attempting to explain their difficulties in social situations and/or groups. Instead, they may skip school, complain of headaches or stomach aches or refuse to go to school.
- Girls facial expressions tend to not match their moods. They may say that are fine, but on the inside they are unhappy, anxious or both.
- Girls tend to be more passive-aggressive (avoid social activities, refuse requests from others or refuse to complete tasks,), tend to blame themselves and/or internalise their feelings and anger and have less ADHD.
- Girls often misunderstand social hierarchies and how to communicate with others based on the level of the hierarchy that the person is on. This can tend to get girls in trouble with adults.
- Girls have better imagination and more pretend play (Knickmeyer et al, 2008), with many involved in fiction, and the worlds of fairies, witches and other forms of fantasy, including imaginary friends.
- Whilst the interests of girls on the spectrum are very often similar to those of other girls, it is the ‘intensity’ and ‘quality’ of the interest which can be unusual. For example, many are very focused on their animals, celebrities or soap operas.
Girls on the autism spectrum are more likely to come to the attention of health professionals due to difficulties with anxiety, depression, eating disorders, behavioural problems and/or social skills challenges. The presenting problem then becomes the ‘diagnosis’, with the larger picture and explanation for feeling “different” is missed.
Women with Autism are most likely to have had a long history of misdiagnoses, often with borderline personality disorder, schizophrenia, anxiety disorder, depression, selective mutism, OCD, but somehow those labels just didn’t seem to fit adequately. Up to 42% have been misdiagnosed (Gould, 2011).
Many women with an autism spectrum condition are not being diagnosed and are therefore not receiving the help and support needed throughout their lives. Having a diagnosis is the starting point in providing appropriate support for girls and women in the spectrum. A timely diagnosis can avoid many of the difficulties women and girls with an autism spectrum disorder experience throughout their lives. Who should I take my child or myself to see? Ask your doctor, psychologist or paediatrician how many girls with Autism they have seen. They must have seen as least 50 girls with AS, due to the ‘social echolalia’ or the camouflaging of social confusion that females on the Spectrum engage in.
Three Common Female Autism Myths and Advice
1. Girls and women cannot socialise. Actually, many girls and can socialise quite well, just not for as long. They tend to suffer from social exhaustion or a ‘social hangover’ from longer periods of socialising. All persons on the spectrum need solitude to recharge their batteries.
Advice: Let your family or friends know that you need a solitude break, to allow you to recharge your batteries. Let them know that this is how your regain your energy.
2. Girls and women lack empathy. Actually, there are different types of empathy. Girls and women have high emotional empathy, being highly sensitive to the emotions of others, also known as referred emotion, the actual feeling of others feelings. This can be quite overwhelming for the person experiencing it. Being overwhelmed by feeling others emotions makes it challenging for them to process or ‘read ‘the subtle social signals (tone of voice, subtle expression on face)
Advice: Learn to accept and trust your intuition. Learning a variety of interventions to help manage or cope with high empathy is important.
3. Girls and women with autism cannot lie. Girls and women with autism can and do lie, but they usually do it badly. They tend to lie to the detriment of all concerned or lie as a quick fix because they do not know what to do, so they will deny, even when it’s plainly obvious that they are. In addition, females tend to tell the truth when it is not socially acceptable to do so or be truthful with their emotions, when it may not be the best time or place to show those emotions.
Advice: Social stories for “white lies” and the appropriateness of “emotional truth” are useful intervention tools.
The following are recommended resources and sources of information:
Safety Skills for Asperger Women, by Liane Holliday Willey
Asperger, H. (1944). Die autistischen Psychopathen im Kindesalter. Archiv fur Psychiatrie und Nervenkrankheiten, 117, pp. 76-136
Attwood, T. (2000). Asperger syndrome: Some common questions: Do girls have a different expression of the syndrome? Available from: www.asperger.org/asperger/asperger_questions.htm#girls
Brugha, T. (2009). Autism spectrum disorders in adults living in households throughout England: report from the Adult Psychiatric Morbidity Survey 2007. The NHS Information Centre for Health and Social Care. Available from: www.ic.nhs.uk/statistics-and-data-collections/mental-health/mental-health-surveys
Ehlers, S. & Gillberg, C. (1993). The Epidemiology of Asperger syndrome. A total population study. Journal of Child Psychology and Psychiatry, 34 (8), pp. 1327-1350
Gould, J. & Ashton-Smith, J. (2011). Missed diagnosis or misdiagnosis: girls and women on the autism spectrum. Good Autism Practice, 2011, Vol.12 (1), pp. 34-41
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous child, 2 , pp. 217-50
Lord, C. & Schopler, E. (1987). Neurobiological implications of sex differences in autism. In: Schopler, E. & Mesibov, G.M. (Eds.). Neurobiological issues in autism. New York: Plenum Press, pp. 191-211
Rimland, B. (1964). The etiology of infantile autism. In: Infantile autism: the syndrome and its implications for a neural theory of behaviour. New York: Appleton-Century-Crofts. p. 54
Skuse, D.H. (2000). Imprinting the X-chromosome, and the male brain: explaining sex differences in the liability to autism. Pediatric Research, 47 (1), pp. 9-16
Wing, L. (1981). Sex ratios in early childhood autism and related conditions. Psychiatry Research, 5
© Tania Marshall All rights reserved. Duplication in whole or part is explicitly forbidden. Thank you.