Flying under the radar: Girls and Women with Aspergers Syndrome

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Flying under the radar: Girls and Women with Aspergers Syndrome

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 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
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• 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 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 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 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.

About Tania Marshall

Tania holds a Masters of Science in Applied Psychology and a Bachelor of Arts in Psychology. She regularly provides diagnostic assessments, support and intervention.

Tania is currently working on her fourth book. She is co-authoring a book for professionals tentatively entitled “Assessment of Autism Spectrum and Asperger’s in Females: Comprehensive diagnostics and treatment planning for girls and women with autism spectrum conditions across the lifespan”.

To enquire or book assessments, problem solving sessions and/or support, please e-mail Tania at tania@aspiengirl.com

Tania is also completing the first three in a series of books on female Autism. Her book series is available for purchase at http://www.aspiengirl.com

To enquire about interviews, articles, workshops, or translations/translating of her books, please email Tania at tania@aspiengirl.com

book series2Tania Marshall©, 2013-2014. All rights reserved. Aspiengirl and Planet Aspien are trademarked. Thank you.

Moving Towards A Female Profile: The Unique Characteristics, Abilities and Talents of Young Girls and Teenagers with Asperger Syndrome or Autism

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The following list is an official working document consisting of the unique characteristics and traits of young girls and teenagers with Asperger Syndrome, or High Functioning Autism. This list comes from the many young females I have worked with over the years and currently work with. I have assessed, observed, diagnosed and worked with hundreds of girls and women of all ages. This document is based on my clinical anecdotal evidence and research by other well-known professionals. I will be modifying and/or updating this list from time to time. This list was written from my reflections, observations and experience, and is written in no particular order. No-one person needs to have every trait, and it is rare that a person would identify with every trait. ***This list is not a research-based female profile.  It is a descriptive anecdotal profile, much like the early day descriptions that Asperger, Kanner and Frankl described of the boys they observed. Please be mindful that research often lags behind anecdotal, observational and clinical work. Updated October 04, 2016

The following profile was created for older teens and family members who are considering a formal diagnosis and to assist mental health professionals in recognizing Asperger Syndrome or Autism in young females.

Females with Asperger Syndrome experience their symptoms in varying levels, so while some Aspiengirls are highly introverted, others are not. Females with Asperger Syndrome or Autism tend to be discriminated due to the wide spectrum of abilities or levels of functioning that exists. The majority of females do not receive a formal diagnosis until teenagers or well into their adult years. This list typifies many of the girls and teens I have worked with. This document is based on my clinical anecdotal evidence and research by other well-known professionals. I will be modifying and/or updating this list from time to time.

  1. Natural born leaders, seen by girls who are strong willed, often very serious, intense, independent, “My Way” and/or stubborn and bossy

  2. Intelligence. Bright with an Intense and insatiable curiosity about the world, people, how things work, what people are doing. May be seen in the persistent asking of questions. Usually high average to genius level, uneven profile of abilities

  3. Intense emotions and mood swings

  4. Highly Sensitive and sensory issues (visual, hearing, smell, touch, balance and movement, intuition). A feeling of being different to their peers.

  5. Social skills differences, which may be displayed in a variety of ways that vary from their same-age peers. For e.g., may be shy in social situations, have one best friend or be a floater (floats from one group to another and having superficial connections with others). A less developed or little understanding of facial expressions, social context, non-verbal body language, theory of mind.

  6. Self-taught. The ability to teach themselves or learn about anything they are interested in. A preference to direct their learning, rather than teacher-directed learning.

  7. A high sense of justice and fairness (empathy for the “underdog”) and adherence to rules about how the world and people should operate and/or behave

  8. Perfectionistic and high standards towards self and others

  9. Anxiety and/or fears, including negative all-or-nothing thinking and/or Obsessive Compulsive Disorder or obsessive tendencies.

  10. Gifts or Talents, which may include but are not limited to singing (perfect pitch) and/or music, writing, reading, artistic creations, languages, self-taught, fast learner or other talent(s)

  11. Fine and/or gross motor difficulties, clumsiness, a lack of co-ordination

  12. Difficulties understanding the human social hierarchy, age groups and roles within a group, family

  13. Sleep issues (difficulty getting to sleep due to thinking too much and/or worrying about events that happened that day or what may or may not happen the next day), often not a morning person, tend to prefer staying up later at night

  14. Stomach issues (cramping, bloating, diarrhea, constipation, gas) are quite common, due to gluten, wheat and/or casein allergies/intolerances

  15. Hyperfocus. May not respond to their name being called due to being fully engaged in thought or an activity

  16. Hyperempathy, emotionally empathic and very caring (for e.g., may lead to bringing home stray or injured animals)

  17. Intense love and/or interest in animals, nature, celebrities, fiction, art, mathematics, languages and/or other cultures. May be obsessed with a person, real or fiction, in an unhealthy manner. Other common special or obsessive interests may include but are not limited to: philosophy, psychology, history (for example, Ancient Egypt or Rome, hieroglyphics), languages, Wicca, Vampires, Occultism, psychological profiling and/or criminology/serial killers/detective/FBI/forensic psychologist, science/space/NASA/Stephen Hawking, technology and programming, physical appearance (for example, Gothic, ultra-feminine, tomboy), fantasy, English literature, Law, make-up artistry, art, acting).

  18. Usually stand out as different from her peers, in terms of her dress (some girls are ultra princess-like in their clothing choices while others prefer to wear more comfortable and functional clothing

  19. Facial expressions may not match the situation or her mood (for example, smiling or laughing in a serious situation)

  20. May have interests that are mature/advanced AND/OR immature for her age (for example, a young child’s interest in english literature, opera or creative writing

  21. May be advanced in reading ability OR have trouble with reading comprehension

  22. May be advanced with mathematics/numbers OR have difficulties (dyscalculia)

  23. May have Irlen Syndrome

  24. May have Dyslexia

  25. May have Auditory Processing Disorder

  26. May have attention/focusing/impulsivity/hyperactivity issues (see Dr. Daniel Amen’s 7 types of ADD/ADHD at http://www.amenclinics.com/conditions/adhd-add)

  27. In social situations, she may be shy, quiet, even mute at times OR loud, very verbal and/or aggressive, imposing on other’s boundaries

  28. Has difficulty with asking for help when needed, saying “no” or asserting her own personal boundaries

  29. As mentioned previously, she may have trouble with her own boundaries, in addition to the boundaries of others

  30. May be naive, vulnerable and have a tendency to be taken advantage of. Often confused socially, saying she knows what to do in a social situation when she really does not. Girls appear to be better than boys at masking the traits of autism in social situations. However, girls are less able to do so in unfamiliar settings.

  31. May bring home stray animals, homeless friends or homeless strangers, much to their parents chagrin

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  1. May avoid demands that cause her anxiety (Pathological Demand Avoidance, see http://www.thepdaresource.com/)

  2. Usually has a low frustration tolerance

  3. May have a different voice, for example, younger than her age, talks “babyish” for her age at times, speaks in an accent or in a monotone voice.

  4. Avoids complying with requests from adults and may have difficulty with authority figures

  5. May be clingy with one or two friends and has trouble sharing her friends with other children

  6. May be a tomboy, a fashion diva or a princess. May or may not be interested in looking feminine.

  7. May not be interested in fashion at all or be obsessed with it

  8. Experiences social exhaustion or “social hangover”, from an inability to socialize as much as her peers are able to.

  9. Many females can look people in the eye and have superficial conversations with them

  10. Often well-behaved at school and has “melt-downs” at home (usually due to social exhaustion)

  11. May play with younger or older children

  12. May have language issues, particularly in semantic-pragmatics and expressive and/or receptive language

  13. May prefer to talk and/or play with boys

  14. May not apologize when she has made a social error OR may appease and apologize too much, even when she does not have too

  15. May watch and/or observe others playing before joining in

  16. May copy, minic or clone herself on other girls, also known as “Social Echolalia”, a mirroring of other children, giving her a superficial social confidence and skill-set by acting the part of another person. However, the complexities of the next step of unwritten social skills soon becomes apparent when she has to navigate the expectations and demands that come with reciprocal relationships and maintaining them. This is both confusing and exhausting for her

  17. May have imaginary friends and/or imaginary animals

  18. May spend more time setting up a play scene, rather than playing with the characters in the scene

  19. May be obsessed with fantasy worlds of fairies, witches, imaginary friends, imaginary animals, dragons, anime, or other

  20. May be highly visual, creative, more imaginative then her peers

  21. She may dominate when playing or talking with other girls OR be passive, quiet and “invisible” within the group. If she is dominating, her play tends to appear to be shared with others but she dominates and insists that others follows her rules and themes. If and/or when others refuse to be engaged she continues on with her own ideas or play. Her play tends to be mostly repetitive. If she is passive, she’s more likely to be compliant and may not come across as having social impairments. She may also be shy, embarrassed, coy, naive, innocent, unassuming, and hide or “camouflage” her difficulties, even lying about whether she needs or understands something or needs assistance or help. She is most likely to be described as “flying under the radar” or “blending in with the walls”.

  22. A tendency to collect information on people rather than things. May be interested in psychology, social work, nursing, teaching or helping others

  23. A tendency to ask a lot of questions, often challenging her parents or other adults, who are unable to provide her with the appropriate or the right answers; may correct the adult or teacher and point out their mistake

  24. A tendency to imitate other girls in order to initiate social contact but then have great difficulty maintaining and keeping the reciprocal friendship going. It is this part that often girls find stressful and they will often ruminate about the social situation, what they could have said or done differently, often late at night

  25. She may appear to have a rich imaginative world but the quality is atypical, tending to be a blend of fantasy and reality

  26. She may have an intense interest in the family pets, who may be her best friends, rather than other children or her peers

  27. May have motor tics, Tourette’s Syndrome

  28. May have a different quality of eye gaze/eye contact. May stare at others

  29. May not have a best friend, but be a “flitterer”, having many acquaintances, some to whom she may refer to as a best friend

  30. May have difficulty completing tasks

  31. May be highly organized, ordered and/or clean OR unorganized and have hygiene issues

  32. May follow other children closely, studying their mannerisms, actions, words, and so on

  33. Intense. There is no other word for it. AspienGirls have an intensity in everything they do. If they cannot do it right, do it properly, do it right the first time, they tend to refuse, avoid, and or express frustration/distress. When taught to persevere, to develop frustration tolerance, to manage their emotions, they are most often successful in whatever they pursue, to the point of becoming an “expert”.

  34. Superior photographic memory and weaker short-term memory

  35. Can be obsessive about people, especially if they feel or perceive that they have been “wronged”. This can get them into trouble at times for hurting others or taking revenge. May obsess over or stalk people. May have a misguided sense of justice that leads them to getting in trouble with other people, lawyers or the legal system/law.

  36. May question why they are “different” or what is “wrong” with them or why they can’t seem to “fit in” of feel that the “mothership dropped me off on the wrong planet and I’m just waiting for it to pick me up”

  37. Lack a clear sense of identity

  38. May be described as “serious”, “shy”, “odd”, “eccentric”, “adult-like”, “weird” in some ways, yet “babyish” in other ways

  39. A tendency to not be accepted by her same-age peers

  40. High likelihood of being bullied and/or teased, overlooked or ignored

  41. Intense dislike of disagreement, conflict, arguments, people yelling or shouting at them or around them. This them tends to an avoidance of conflict causing more serious communication difficulties. For example, this may be observed in a person who is unable to deal directly with a person they may have an issue with, but rather engages in talking or gossiping about their issue with that person with everyone else.

  42. An inability to handle and/or cope with stress, conflict and/or change

  43. An inner resilience, strength and ability (strong will and determination) to bounce back from stress and setbacks time and time again. This does depend on particular internal and external factors at play.

  44. Some strengths, abilities, talents and interests may include: enjoying fantasy worlds, fiction, acting, modelling, art, mathematics and numbers, music, song-writing, perfect pitch, writing fiction, languages and/or translating, caring for nature and/or animals, research, learning and studying, intelligence, teaching, helping others, science and medicine.

  45. May invade other’s personal space or stand too close to them or be unaware of boundaries

  46. May dislike people looking or staring at her. This is often a huge barrier for talented and gifted performers (for example, singers performing in front of others or crowds, actors being on the red carpet).

  47. May be perceived as being “just shy and quiet”

  48. Most often confused by the conversations of their teenage peers

  49. May walk on her tip-toes or have an “odd gait”, motor difficulties

81. May be very social, very loud, extroverted and make continual attempts to be part of a group. Her attempts are clumsy and her peers may see her as not quite fitting in. She lacks social skills and a social understanding to help the interactions go gracefully. Her peers don’t quite understand her social awkwardness and may be be mean to her, ostracize her and/or make fun of her, taking advantage of her naivety. She may appear to “flitter” from one person to the other or one group to the other, unable to have a typical friendship, due to smothering people or groups. Her peers take advantage of her, make fun of her and/or will be mean to her, saying they are her friend one day, but their actions prove otherwise. The issues revolve around girls being mean to her and cutting her from the group. She often smothers others and doesn’t understand the levels of friendship or social boundaries.

  1. Thumb-sucking may last well-past pre-school age, until 9 or even 10 years of age.

83.  Often as a teen, spending breaks/lunches alone in the hallways, toilets, library, or with a teacher, due to not being part of a group and/or having no friends.

84. May have Alexithymia, an inability to identify and describe emotions in the self 

  1. May have Synaesthesia, in particular mirror-touch synaesthesia. Research studies hypothesize that empathy is experienced by a process of simulation. So for example, when we see someone feeling happy or sad, the same neural circuits used to make them feel happy are activated in our brain. Since mirror touch synesthetes have heightened activation of mirror systems, it can be hypothesized that that these individuals may also experience higher empathy, and this has been confirmed by research in this area. Mirror touch synesthetes experience more empathy than non-synesthetes. A research study by Michael Banissy et. al  determined this by using the empathy quotient (EQ), consisting of three main scales: cognitive empathy, emotional reactivity, and social skills. Mirror touch synesthetes showed significantly higher EQ scores in emotional reactivity than in controls. However, synesthetes did not show higher scores in cognitive empathy and social skills. Thus empathy is multifaceted, and the tactile mirror system may not be fully responsible for the ability to empathize (For more information, check out Banissy, Michael; Jamie Ward (July 2007). “Mirror Touch Synaesthesia is Linked with Empathy”. Nature Neuroscience 10 (7): 815–816. doi:10.1038/nn1926).

References

Attwood, Tony (2006). Asperger’s and Girls. Future Horizons.

Kopp S, Gillberg C. Res Dev Disabil. 2011 Nov-Dec;32(6):2875-88. Epub 2011 Jun 12.

Gould, Judith and Ashton Smith, Jacqui. (2011). Diagnosis or Misdiagnosis? Women and Girls with Autism and PDA

FAQ: Why do your pictures include visuals of girls or women in superhero outfits? In my clinical experience and work, I never cease to be amazed by an Aspiengirls’ ability to bounce back from stress and setbacks time and time again. I refer to Aspiengirls’ abilities as “aspienpowers” because there is no other group of girls or woman I know of with the unique profile of abilities, traits and characteristics (aspienpowers) that enable them to be highly successful in their chosen careers and/or life, given the right environmental fit and support.

About Tania Marshall

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Tania holds a Masters of Science in Applied Psychology and a Bachelor of Arts in Psychology. She is a best selling author, child and family psychologist and Autism consultant. She is an APS Autism Identified Medicare Provider, a Helping Children With Autism Early Intervention Service Provider, a Better Start Early Intervention Provider, a Medicare Approved Mental Health Provider and a Secret Agent Society (SAS) Trained Group Facilitator.

Her areas of interest include: Gifted and Talented, Autism, Asperger Syndrome, Twice-Exceptionality, Highly Sensitive Individuals, Learning Disabilities, Performance Anxiety and Psychological Profiling

She regularly provides diagnostic assessments, support and intervention and divides her time between private practice, writing and research.

To enquire or book consultations, assessments, problem solving sessions and/or support, please e-mail Tania at tania@aspiengirl.com

Tania has now completed the first two in a series of books on female Autism. She is now writing her third book entitled AspienPowers: The Unique Constellation of Abilities, Strengths and Talents of Females on the Autism Spectrum”.

Her book series is available for purchase at http://www.aspiengirl.com

To inquire about interviews, articles, workshops, presentations, or translations/translating of her books, please email Tania at tania@aspiengirl.com

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Tania Marshall© 2013-2015. All rights reserved. Thank you.