Emerging Themes of Autobiographical Narratives by Females on the Spectrum

Autobiographical Narratives of Adult Females on the Spectrum

This blog is a sample of  soon to be released book entitled “Behind the Mask: The autobiographical narratives of undiagnosed females on the Autism Spectrum”

Updated 23/09/2016

Over the years I have listened to the narratives of many individuals on the Spectrum. I have interviewed and listened to females, read their autobiographical narratives (a 3-4 page written narrative from their earliest memories until early adult years) and provided support and intervention to them and their families. I have also interviewed and listened to their partners, mothers, fathers, siblings, children, carers and/or their doctors, psychologists and other professionals. Within this unique group of females, interesting themes emerge from their narratives. Briefly, what follows is just some of the many common themes that I have identified within the narratives of the females that I have worked with. Thank-you to the fabulous women who gave permission to use their own words. If you are looking for a fee-for-service assessment or support, please contact tania@aspiengirl.com  Thank-you.

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1. A strong feeling of being “different”, “odd”, “weird” or feeling as though they are from another era or planet, and/or feeling like the “black sheep” in my family.

 “I have always been trying to figure out what was wrong with me and why I am so different”

  1. A strong will and sheer determination

“If I want to achieve something I will do it and I’m prepared to put the work and effort into getting it. Nothing will stop me”

3. A lengthy history of therapy, counselling and/or medication.

“I have a history of “labels”, therapy, counselling, group work, you name it. I just had another five labels attached to me…borderline personality disorder, anxiety, some mood disorder, depression, OCD and some more crap therapy, and medication, which has only partly resolved my issues”.

4. Being invalidated, and unheard.

“I have been told I cannot possibly have AS because of my successes, the way I dress, my eye contact, the way I communicate with others, my ability to socialize, my verbal abilities and my intelligence. She said I don’t need any help and was unwilling to diagnose

  1. Low self esteem

“I have had very low self esteem from very young, but bizarrely I have a confidence to do my own thing”

  1. A history of being bullied, teased, manipulated and lied about

“I experience ridicule, criticism, humiliation, psychological bullying, and teasing, even towards me by those on the Spectrum. I thought people on the spectrum didn’t do those things. I joined a group of female Aspies. I thought it would be supportive and helpful. I was wrong”

  1. The experience of education/school

“From the second I was picked up from school (after my first day) right up to the second I finished my final paper, fourteen years later, school was a psychic nightmare beyond any measure, for me”

8.  An uneven skillset

“The teacher told my mother that I was emotionally immature. I was exceptionally bright, determined, strong-willed, naive, and intelligent with hyperlexia and dyscalculia”

  1. I feel very intense emotions in relation to animals, and inanimate objects. By the age of seven or eight I had become so deeply sensitive to any sort of criticism.

“I cannot watch television, listen to the radio or watch violent/horror movies. Being on a anti-depressant has helped me be less sensitive. I need that to cope in the world”

10.Social echolalia, masking and fitting in

“I altered my entire phenotype; my true self was hidden and made invisible, even to my parents. I changed the way I walked, my tone of voice and I practiced smiling at myself in the mirror. I suppressed every urge to express my feelings and beliefs. I still don’t know how I managed it because I am a naturally very emotionally intense human being. I hated people asking me what was wrong, or why I was staring at their lips. I hated myself for feeling so different. I didn’t know why I couldn’t look people in the eyes; all that mattered was that I learn to look normal”.

  1. A deep love of fantasy and other-worldly themes

“Fantasy was my primary source of satisfaction. It was in the moments that I was alone that I dissociated, escaped into my very own safe little world. My Imagination was my salvation. I had friends, and I lived in nature. Often I was Pocahontas, or a fairy that could fly away. I wrote long, complex narrations about fantastical animals and magical people.

  1. Finding refuge in animals and objects

“Every afternoon after school I would, to some extent, feel very tired, moody, irritable and/or angry. Human affection could not console me. I rather found refuge in my pets; they were my real friends. I felt that I could trust them to love me unconditionally. There was always only one of them that I could give all of my undivided attention to at any given time. I considered myself the world’s best animal trainer, and handler- except not including human beings. Fortunately, I naturally found behavior a vast topic of interest. I managed to pull off normal, just in time for the school bell to ring signifying ‘home time’!”

  1. A history of eating issues and/or an eating disorder

“My eating disorder is a way of controlling my life. I have always been picky with food and have huge sensory sensitivities”

  1. Life is more challenging for me compared to my peers

“I have been married, had children, jobs, a life…but life just seems to be so hard. I often say, “Geez, just living day to day is hard for me.”

15.  Years of Searching.

“I spent years searching, looking answers. I joined clubs, groups, religions, group therapy, AA, even a cult. I realized I was really just hoping to find the answer to why I felt so different.

 

Behind the Mask 3D

 

I am Aspiengirl,  I am Aspienwoman books and Aspienpowers can be purchased from http://www.aspiengirl.com

Tania is a best-selling author, writer and psychologist. She is available for assessments, consultations (in-person or Skype), interviews and/or presentations at tania@aspiengirl.com

For more information on female Autism/Asperger Sydnrome go to : http://www.taniamarshall.com

Tania Marshall. 2016.  All rights reserved. Thank you.

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First Signs of Asperger Syndrome in Bright Young Girls Pre-school – Updated December 11th, 2016

Updated 11/12/2016

This blog has been viewed over 388,000 times.

Tania Marshall© 2013-2017. All rights reserved. Aspiengirl and Planet Aspien are trademarked. Thank you.

The following list is my official working screener document consisting of the unique characteristics and traits of pre-school girls with Asperger Syndrome, or AspienGirls. It is not a research-based formal assessment tool. This list comes from the many pre-school girls I have worked with over the years. I have assessed, observed, diagnosed and worked with hundreds of girls and women of all ages across the lifespan. 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.

***Please be mindful that research often lags many years behind anecdotal, observational and clinical work. Tania has completed the sequel to her best-selling book I Am AspienGirl, entitled I Am AspienWoman, both published best sellers and IPPY eLIT Gold Medal Award Winners. The following profile was created for family members or professionals who are considering a formal diagnosis and to assist mental health professionals in recognizing Asperger Syndrome or High Functioning Autism in pre-school females. Females with Asperger Syndrome experience their symptoms in varying levels, so while some AspienGirls are highly introverted, others may be extraverted. I will be writing about “subtypes” more in the future. This list typifies many of the young AspienGirls I have worked with. I can be contacted at tania@aspiengirl.com for diagnostic impressions assessment, intervention, support, interviews, workshops/conferences, and translations.

First Signs of Asperger Syndrome in Bright Young Girls Pre-school

This blog is at the back of I Am AspienGirl Pre-School

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In my clinical practice and experience with hundreds of females, I have become familiar with some very subtle common and early first signs of Asperger Syndrome in young girls, from birth through to pre-school years. The following are some very common early characteristics, traits, gifts and talents that I have seen in my work over the years.

1. Intense emotions: In particular, separation anxiety, stress, anxiety or distress. This is coupled with an inability to be comforted by affection, distracted by a toy or change in situation, or by discussion or conversation with an adult. Anxiety and “shyness” is very common.

2. Sensory sensitivities: There are most often sensory sensitivities involving vision, hearing, taste, smell, touch, balance and/or movement and intuition or a 6th sense. This is known as sensory processing disorder (SPD). First signs may include a sensitive head, not liking to have their hair brushed or washed, clothing sensitivities, and/or food sensitivities.

3. Coping with transitions and/or change: An inability or difficulty coping with change or a resistance to change.

4. Language skills: Atypical or unusual traits in terms of the development of language skills. May have more formal or pedantic use of language. May not be able to express in words what she wants to say. Articulate.

5. Speech: May not typically be delayed; however, there may be a loudness or softness in the voice. May regress to babyish talk when stressed, anxious, or avoiding something. She may have begun talking very early.

6. The social use of language: May be apparent in that the linguistic profile can often include semantic-pragmatic difficulties, so that the pedantic speech may be apparent and their are noticeable eccentricities with the “art of conversation”. May use bigger words than her peers. She may also be socially immature, in comparison to her peers.

7. Hyperlexia: May have taught herself to read before formal education. AspienGirls often have an intense interest in reading and develop an advanced vocabulary.

8. Play: Adults may notice the AspienGirl may not want to play with others or she may direct others’ play, rather than play in a reciprocal and co-operative manner. There is an element of her being “controlling” or “bossy”. She may tell adults that she finds her peers play confusing, boring, or stupid. She may prefer to play on her own, with her animals/toys or with boys. If she is extraverted, she may have difficulty with personal space (hugging and/or touching too much, poking or prodding, bumping or touching them, continually calling her peers names, not understanding that a best friend can play with others). Often may need more solitude than their peers or may not be able to socialize for as long as their peers are able to. Engages mainly in parallel play and seeks the company of adults/educators throughout the day.

9. Interests: An AspienGirl’s interests are usually different to other typical girls in its intensity and quality, rather than the actual interest itself. Often, play can be observed as more of complex set-ups, organizing, sorting, collecting, or grouping items rather than actually playing with them. She may be observed re-enacting a social scene from her own experiences at daycare. A commonly observed interest is collecting stationary/art items, teddy bears, and the like. They may line up colouring pencils in a particular order of colours and have collections of erasers and/or journals.

10. Conventionality: AspienGirls are born “out of the box” and may be observed playing unconventionally. Some prefer Lego, the sandpit, trucks, cars, or dinosaurs. Many think in different or unconventional ways, asking continual and exhausting amounts of questions pertaining to how things work, why things are the way they are, or why people do or say certain things. Many are quite highly sensitive and will ask about death and/or what happens after death.

11. Appearance and clothing: Young Aspiens may look more tomboyish in appearance or ultra princess-like, usually preferring clothing that is comfortable. She may want the tags cut out of her clothes and complain about the seams in her socks. She may prefer to wear the same outfit day in and day out.

12. Imagination: AspienGirls often have advanced imaginations preferring to spend time involved in; fiction, books, fantasy worlds, fairies, unicorns, ponies, Pegasus, talking to and/or having imaginary friends, or imaginary animals. This may be observed at times to the extent that the child may believe they are an animal, a fairy, and so on. There may be some difficulty distinguishing between fantasy and reality.

13. Writing: AspienGirls are often interested in writing and write their own stories on sticky notes, journals, and have an interest in fiction at an early age.

14. Nature and animals: AspienGirls have an intense love for nature and animals, often preferring them over people. They have an empathic and intuitive relationship and an understanding of animals rather than people.

15. Gifts and talents: Most, if not all, AspienGirls have gifts and talents including, but not limited to; singing (perfect pitch or perfect relative pitch), music, art (drawing, painting and other mediums), languages, acting and performing, dancing, writing, a superior memory and intelligence.

16. Determination: A strong will, determination, stubbornness and/or competitiveness, argumentative (with teachers, parents, or other adults), or a need to be right (even when she’s is clearly wrong). This may be labelled as Oppositional Defiant Disorder.

17. Facial expressions and emotions: A discrepancy between facial expression and feelings. For example, a “fake” smile, intense facial expressions or lack of, or inappropriate facial expression to the situation. May not understand or be confused by facial expressions. May laugh when she is in trouble.

18. Attention issues: Parents may have taken her to a hearing specialist due to not responding to her name, being “in her own world”, and/or thinking she may be deaf.

19. Hyperempathy: May be very sensitive to social justice issues, abuse towards animals, nature, or the elderly. May experience the emotions of others. May wonder why they feel different to others.

20. Intuitive: May tell you or know about events and people that they cannot possibly know about. She “knows” certain things without knowing how she knows these things.

21. Curiosity and questions: May ask an endless array of questions that at times, cannot be easily answered. May ask why they feel different to their peers or why their peers are not like them, or have the same interests.

20. Interests: Interests are usually similar to neurotypical girls, but the intensity is unique or unusual. An obsession with knowledge on a topic of interest is common.

21. Nausea: May have vertigo or motion sickness (e.g. on a car trip)

22. Habits: Thumb-sucking can last until age 9 or older, biting of nails, and/or grinding of teeth.

23. Co-ordination: May have Developmental Co-ordination Disorder (DCD), hypermobility, clumsiness, or poor muscle tone. May not be able to catch a ball, ride a bike, or may have poor handwriting.

24. Anxiety: May have social anxiety, muteness, or separation anxiety. She may grind her teeth or be excessively clingy.

25. Fear: May have fear and/or phobias (insects and butterflies, dark, separation from mother).

26. Sleep: May have sleep issues.

27. Personality: May be intensely shy and introverted or very extraverted to the point of annoying her peers or family members.

28. The Social Hierarchy: Misunderstands and is unaware of the social hierarchy. May behave as if she is the parent, parenting their parents, their siblings, peers, or teachers. May not understand that she is a “child” or how to “be” a child. May be isolated, alone, or teased by her peers. May have a boy for a friend rather than girls. May not understand that she is a child (e.g. believing they are an animal or an adult).

29. Avoiding demands: May avoid demands due to anxiety (also known as demand avoidance or Pathological Demand Avoidance).

30. Epigenetics: There is a family history of Asperger Syndrome, Autism, Schizophrenia, Bi-Polar Disorder, Depression, Anxiety, or Broader Autism Phenotype (BAP)

31. Maturity: May display interests that are more mature or less mature than her age group. May act at times more mature or less mature than her age.

32. Moral compass: A concern for the rules and a strong sense of justice. May have difficulty with perspective taking, theory of mind, social thinking and context blindness.

33. Social and emotional delay for her age, yet seen beyond her years.

34. Self-taught: Parents may observe some “self-taught” abilities and/or the child may resist being taught by others.

35. Safety: May lack a sense of “stranger danger” or safety. May wander, have social naivety, be too trusting, take others literally, and have a lack of boundaries

36. Gender: Some AspienGirls experience gender confusion very early, expressing a desire to be the opposite gender. They may not feel strongly either male or female.

37. A tendency to have intense social justice issues and to “police” others, which are often not appreciated by their peers. At times, she may have a misguided sense of justice and an inability to “let things go” or may not understand the issue is not her business

38. May be the “teacher’s pet”, may to interact with their peers not as a “peer” but in more of adult manner

39. A tendency to be too emotionally honest and unable to hide their true feelings

40. May have gastrointestinal issues, gluten, wheat, casein sensitivities to intolerances/allergies

  1. Subtle eye contact differences, often only observable to a trained clinician

  2. Empathy – may lack empathy (knowing what to do and how to respond emotionally  in certain situations) but have too much sympathy

  3. Repetitive questioning or repetitive sentences or wording

What to look for in Kindy/pre-school/Grade 1

Separation anxiety from parent or caregiver

Seeks and/or prefers the company of adults or educators throughout the day

Intense emotions often observed by crying

Sense of justice, adherence to rules, telling on others (or herself), described as bossy

Can make friends but may have difficulty maintaining more than one friendship. It is the quality of the social interactions, as compared to her peers, that is the key indicator

May be clingy to one peer

Often has an advanced reading ability

Correcting the teaching or others

May be observed by herself and/or wandering around alone

Teachers may view her as the odd one out, “odd” or “different”

Passive and.or resistant to contributing to class group work/discussion and/or lack of interest in classroom activities

May be viewed as the “teachers pet”

The key social diagnostic characteristics include: A. PLAY: may not be motivated to play with female peers. May play with boys or alone B. IMITATION: using copying and mimicking to imitate and attempt to fit into the social world. This helps them cope with their social confusion. C. INTEREST: a lack of interest in what their female peers are interested in or their typical play. A tendency to role play adult roles. A tendency to spend the majority of the time “setting up” the scene rather than playing with it. The interests are often similar to their peers, but it is the “intensity” of the interest that is the difference. There are differences in the areas of play, friendship and social situation abilities and interests.

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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 two-time Gold Medal award winning IPPY eLIT award winning author and a two-time nominated ASPECT Autism Australia National Recognition Award Nominee for her work in advancing he field of female autism. She regularly provides diagnostic assessments, support and intervention. Tania is a Best Selling Author, Child and Family Psychologist, Autism Consultant, an APS Autism Identified Medicare Provider, a Helping Children With Autism Early Intervention Service Provider, Better Start Early Intervention Provider, a Medicare Approved Mental Health Provider and a Secret Agent Society (SAS) Trained Group Facilitator.

She is both publisher and author of the Aspiengirl Book Series at http://www.aspiengirl.com

Tania is the founder of Aspiengirl®, Planet Aspien, The Aspiengirl  Project and the Be Your Own Superhero Project and the Planet Aspien App (available at iTunes or Android)

To enquire or book assessments, problem solving sessions and/or support, please e-mail Tania at tania@aspiengirl.com Tania has completed the first two in a series of books on female Autism. Her book series is available for purchase at http://www.aspiengirl.com

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

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Tania Marshall© 2013-2017. All rights reserved. Aspiengirl and Planet Aspien are trademarked. Thank you.

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.