This is a recent FAQ on self-deprecation in neurodiverse females. As always, If you like it please share and leave your positive comments or other questions below. This video was made by the Neurodiversity Academy, founded by and funded by AspienGirl girl.com
The AspienGirl Project is pleased to announce that the sequel to ‘I am Aspiengirl’ entitled ‘I Am AspienWoman’ recently won a 2016 IPPY eLit Gold Medal Award in the “Women’s Category” in April. I am AspienWoman is the culmination of a blog Tania wrote a couple of years ago entitled ‘Moving Towards a female profile of Asperger Syndrome’, with close to 300,000 views, to date. That blog is regularly updated. You may purchase copies at http://www.aspiengirl.com, Amazon or other fine books stores.
Tania spends her professional time in private practice. She provides diagnostic assessment impressions reports regularly (across the lifespan), and provides interventions and support. For more information regarding diagnosis and assessment, bookstore wholesale discounts, book contracts, interviews, translations, workshops and conferences, please email email@example.com
Updated January 3rd, 2016. This post will be updated on an on-going basis
I have written this blog specifically to educate, advocate and provide awareness for an unknown syndrome in Australia, called Pathological Demand Avoidance (PDA) Syndrome. Many children are misdiagnosed with other conditions and/or parents are sent on parenting courses that are ineffective or make things worse for these types of children.
Presently, Pathological Demand Avoidance (PDA) Syndrome is not recognized in Australia and is not recognized by the DSM5. It may be confused with intermittent explosive disorder, oppositional defiant disorder and other disorders or conditions. It is extremely challenging to find support or assistance for PDA in Australia. Many professionals are unaware of PDA. However, the National Autistic Society in the UK has recognized PDA as a form of Autism (http://www.autism.org.uk/about/what-is/pda.aspx#). This is a most progressive and positive move.
Over my career, I have worked with some of the most behaviorally and emotionally disturbed children (and adults). I have worked with a number of children and adults (in two countries) who have been described by their family members, school officials, educational consultants, as “naughty”, “Jekyll and Hyde”, “bi-polar”, “schizophrenic”,”possessed” or even “a devil’s child”. I have worked in private special needs school, hospital psychiatric, outpatient and inpatient and private practice settings. In one professional development session I attended, a psychiatrist suggested “these children needed to be thrown out the window on the drive by past school” (in order to help them overcome their anxiety). I have seen and heard it it all, and I can tell you, these children do not need to be thrown out windows and are not possessed by any “devil”, although they can and do behave in some very scary ways, at times.
Presently Pathological Demand Avoidance (PDA) Syndrome is not recognized in Australia and is not recognized by the DSM5. It may be confused with intermittent explosive disorder, oppositional defiant disorder and other disorders or conditions. It is extremely challenging to find support or assistance for PDA in Australia. Many professionals are unaware of PDA. However, the National Autistic Society in the UK has recognized PDA as a form of Autism (http://www.autism.org.uk/about/what-is/pda.aspx#). This is a most progressive and positive move.
Pathological Demand Avoidance Syndrome (PDA) is a term by Elizabeth Newson, used to describe children and adults who have an extreme need for control that is led by high levels of anxiety. They have difficulty coping and complying with day to day activities and their behaviors are out of proportion to the task being requested of them (for example, a violent act over being ask to pick up a toy). They have a lack of sense of a social hierarchy and have been described by others as socially manipulative and having anger management difficulties, which may include growling, grunting, spitting, hissing, violence and/or swearing. They may have a “look” in their eyes that is indescribable and/or scary to the parents(S) and family members.
The word ‘pathological’ is used to describe the avoidance as impairing their ability to function. Avoidance is used in many ways and the strategies are manipulative in a social way to avoid a demand. I have seen children use distraction, a multitude of excuses, stories and/or lies, negotiation and arguing, screaming and biting, hostility, attacking other people and/or becoming violent, running away, hiding, engaging in highly embarrassing activities in public, withdrawing into a fantasy world and acting like animals, just to name a few strategies.
Socially, children with PDA appear to have better or more social skills, however they do not have full empathy. I have observed them use empathy to control and/or manipulate others or a situation, but there is a stark lack of emotion involved. They may use their intellect to manipulate others.
At times, these children can appear as though they are just like any other child and at other times, they can be extremely challenging. These types of children are extremely moody, highly anxious, love role play and pretending, may have sensory sensitivities, tend be be bossy and domineering, and may not realize that they are a child, in the true sense of a little person. Some believe they are animals, rather than human. If you believe your child has PDA, typical parenting or even Autism parenting strategies will NOT usually work.
If you think your child has PDA or traits of PDA please read the following books. I am also available to consult with by emailing me at firstname.lastname@example.org
There are specific assessment tools to assist with diagnosing PDA.
Duncan M, Healy Z, Fidler R & Christie P (2011). Understanding Pathological Demand Avoidance Syndrome in children. London: Jessica Kingsley Publishers.
Fidler R, Christie P (2015). Can I tell you about Pathological Demand Avoidance Syndrome? London: Jessica Kingsley Publishers.
I had the pleasure of attending one of Dr. Greene’s conferences in North America and I cannot recommend his work enough.
Greene, Ross W. (2014). rec. 5th edition. The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children
Greene, Ross W. (2014). Lost at School: Why Our Kids with Behavioral Challenges are Falling Through the Cracks and How We Can Help Them
Greene, Ross W., & J. Stuart Ablon (2005). Treating Explosive Kids: The Collaborative Problem-Solving Approach.
Sherwin J. A. (2015). My daughter is not naughty. London: Jessica Kingsley Publishers.
Dr. Greenes’ Centre for Collaborative Problem Solving
Streaming Video or DVD: Explosive, Noncompliant, Disruptive Aggressive Kids at http://www.cpsconnection.com/store
You don’t have to wait for Dr. Greene to be speaking in your area to watch his one-day overview of the CPS model; you can watch streaming video or download MP4 video or MP3 audio formats.
Recommended Australian Resources
If you know of a professional in Australia who works with PDA, please let me know and I will add them to the ‘PDA Professionals list’, by emailing me at email@example.com
Look for my new book on PDA and females, coming 2016
Copyright, Tania Marshall, 2014-2016
Currently, I am writing two books, “AspienPowers” and “Behind the Mask”. Quite often, as I am writing, certain memories or themes from my years of work come to the forefront of my mind. In my clinic work with individuals who are discussing their history’s or reasons they are seeking a diagnosis, I have come across a variety of barriers (other than cost) to a diagnosis. I also discuss briefly in my second best selling book I am Aspienwoman that other people may not believe the person once they receive a diagnosis.
Briefly, these include:
“My doctor told me I am a professional working woman so I couldn’t possibly have Autism/Aspergers”.
“I was told I have children, am a good mother and am functioning quite well, so why would I want a diagnosis? He refused to refer me”.
“I went in for an assessment and they gave me child assessment forms to fill out. I couldn’t answer most of the questions”.
“The majority of professionals I called said they only work with children”.
“My psychiatrist said I make great eye contact and talk well with him, so I couldn’t have Autism/Aspergers”.
“The local Autism Society had no-one they could recommend who was trained and experienced in working with Autistic females”.
“The professional I went to see said I couldn’t have Aspergers because it is no longer in the DSM5”.
“The professional I see said I only have anxiety, depression and social anxiety which I have had all my life (from birth). I tried to explain the sensory issues, my Irlen Syndrome and my gender fluidity, to no avail”.
“Ï was told I am a professional actress, making money and working and that I did not fit the profile (the male profile) of Autism/Aspergers”.
“I was told I present too well to have Autism/Aspergers. I am a professional model and I love make-up, clothes, fashion design and shoes, but I have always had social problems. I was told because I am well liked by others that I could not possibly have Autism/Aspergers”.
“I was told by a professional that Autism/Aspergers is a ‘male’ thing”.
“I was told I have Social Communication Disorder and that’s all. I know that’s not all I have, so I am going for a second opinion”.
“I was told I am too social and therefore it’s impossible for me to have Autism”.
“I didn’t/don’t know how to drop my mask (with my psychologist) and only managed to get an anxiety diagnosis”.
“I have spent so much time teaching myself social skills, reading books on social skills, going to drama classes, that no-one believed me until I saved my money up and saw someone who is both a psychologist (and has worked with many females) and an author (writes about females) for many years”.
“My daughter met two of the 3 criteria on the ADOS but has no RRP’s, so she did not receive a diagnosis”
“They said my daughter has some traits but not enough, so she now has a label of ‘Disruptive Mood Dysregulation Disorder'”
“My daughter is a Jekyll and Hyde and did not receive a diagnosis because she is so well-behaved at school”
To Be Continued…more coming soon
For more information of female Autism, please go to:
Free webinar The female Autism Conundrum
To contact Tania for fee-based impressions assessment/diagnosis, consultations, media interviews/inquiries, workshops and.or conferences, book reviews, translations, please email Tania at firstname.lastname@example.org
Copyright Tania Marshall, 2014-2016
On the Bright end of the Autism Spectrum and the female Autism Crisis: How and Why Do Bright Autistic Females fly under Professional Radar?
Female Autism is a new and complex area of research with information in this area of Autism growing exponentially. Both empirical studies and qualitative differences are starting to show show that females ‘meet the diagnostic criteria’ in different ways from males. This then leads to females being misdiagnosed, mistreated and/or medicated. In 2015 alone, there have been over 15 gender studies published regarding the differences between males and females. While research is starting to catch up with clinical and anecdotal research, the time it will take for this to trickle down to professionals and those at the ground level may take many years, with females continuing to be under diagnosed and/or misdiagnosed. Many girls and women exist today without a diagnosis. She may have even been assessed by a professional working in the area, but was told she did not meet the “criteria”. If a female can get an accurate diagnosis, she is then often left without intervention and/or support. This is what I call the ‘Female Autism Crisis’.
The ‘Female Autism Crisis’
There is a lack of awareness, understanding and education regarding the female profile or ‘phenotype’, a range of often subtler characteristics, strengths and challenges that do not fit the male profile nor does a female with a diagnosis of Autism feel she fits that profile Common characteristics have been outlined in my initial blogs which were then turned into my book series (bestsellers I Am Aspiengirl and I am AspienWoman).
There is a need for research on:
the differences between neurotypical girls and Autistic girls
camouflaging of autistic symptoms and impairments, adaptation, learning, masking or compensation abilities
diagnostic and classification challenges
the factors that increase or decrease the risk of a female being misdiagnosed or completely missed; the consequences associated with this
information as to how culture, social factors, gender and/or familial upbringing play a part in female Autism
Why do Autistic females fly under the professional radar and why will this continue to occur for some time?
- Autism was and still is presumed by many people, professionals included, to be a “male” condition. Some professionals acknowledge that females have Autism and may be unaware that males and females often present very differently.
2. Adherence to a very strict DSM5 criteria which has a gender bias. Whilst DSM 5 has hinted at sex differences in Autism, it does not acknowledge brighter individuals. It also does not elaborate much on what these actual differences are or whether there is a female profile or phenotype.
Unfortunately, some girls are now being diagnosed with the DSM5 Social Communication Disorder (SCD)
3. A female phenotype is emerging that suggests an inherent gender bias. The Sfari webinar entitled The Female Autism Conundrum is a great place to start to understand this bias
4. Professional ‘bias’
The child’s behaviors are more a function of the families “alternative” lifestyle
The child does not present with significant enough behaviors, appearing to be “normal” externally
The child does not present with the “male” stereotype or “female” stereotype of what Autism should look like
The childs anxiety, eating issues or behaviors are the focus and the diagnosis is missed
Strict adherence to the diagnostic criteria
5.The emerging female phenotype or profile
A steady collation of anecdotal, clinical and autobiographical reports and current research discuss different presentations, phenotypes or a “female profile” and when assessed with “male-biased” or male-centric tools, many females slip through the cracks. Females on the Autism Spectrum can and do hold eye contact and make superficial conversation. If fact, they can hold superficial conversation for an entire session with a professional!
The girl does not have stereotypical repetitive behaviors
1. There is a lack of assessment tools created for females across the lifespan. The ADOS often shows elevated traits, but not enough to meet the criteria for a diagnosis. Females are often missed because they do not meet the cut-off score, although there are often clues in the ADOS results. Females can have the ability to discuss many social-emotional areas by responding cognitively well. However, many parents, school officials, and/or professionals have found that those social-emotional areas are not often displayed or used adequately, and often then, see the individual using other strategies to cope. It appears that the characteristics and traits as captured by “gold standard” assessment tools may be male-biased due to the gender-centric items that contribute to the scoring. A further comprehensive assessment and/or a second opinion then reveals the individual does meet criteria for Autism or Asperger Syndrome.
2. Females often can and do engage in superficial conversation, make good eye contact and conversation, for the first initial session or hour. This can confuse professionals who are used to seeing particular social clues more immediately and who may think that a female is just “too social”.
3. A lack of understanding regarding coping strategies, compensatory strategies, masking behaviors and the more subtle presentations. Female body language can be expressed quite differently as they learn to act, pretend, mask and compensate for their social difficulties.
4. A lack of trained professionals working in the area of female autism
5. Confusion as to the diagnostic overshadowing, for example, whereby a female may be diagnosed may be told she is “shy” rather than “social anxiety”, may be diagnosed with an “eating disorder” rather than Autism.
6. A lack of understanding how females with Autism present across the lifespan
7. A lack of both quantitative and qualitative data and research regarding females
8. Co-occurring conditions can make assessment a complex and challenging process for diagnosticians working with adults. Whilst many adults have been or are misdiagnosed with a personality disorder, there are adults with both Autism and a personality disorder or those who have been misdiagnosed with Autism and really have a personality disorder
9. A lack of knowledge about the heterogeneity within the female group and the variance in how it presents. There exist different subgroups in females with Autism and range from a more “male” autism profile-type presentation (maybe diagnosed earlier) to those with many “masking” characteristics, where professionals or family members may not believe the person who is telling them about their diagnosis. The female group as a whole consists of much heterogeneity and thus females can present in sub-types (for example, a tomboy, a fashion princess, a bookworm professor type, the athlete). This further causes confusion for diagnosticians who are not familiar with the range of presentations within female Autism (often diagnosed much later, if at all). There is a tendency for an “obsession” to become the person’s identity.
10. For some young females, the need does not appear to be “obvious”, or the “issues” are misinterpreted, UNTIL the teenage years. Presenting concerns may be interpreted as another disorder or generalized. For example, “she’s just got some social issues”, “she”ll grow out of it”, “she is just shy”. Some females present with an eating disorder and Autism is never considered.
11. Some common misconceptions or myths about female Autism can contribute to this issue: “She can make friends, make eye contact and socialize, so she can’t have Autism” “She is too sensitive, so she can’t have Autism” “She holds down a full-time job, so she can’t have Autism” “She has too much empathy so she can’t have Autism”.
12. Females tend to exhibit better expressive behaviors (reciprocal conversation, sharing interests, integrating verbal/nonverbal behavior, imagination, adjusting their behavior by situation) despite similar social understanding difficulties as males), present with different manifestations of friendship difficulties (better initiation but problematic maintenance, overlooked rather than rejected by peers, better self-perceived and parent-reported friendship), and different types of restricted interests and less repetitive use of objects.
13. Some common female differences include: less repetitive behaviors, a greater awareness of the pressure and desire for social interaction, a passive personality, often perceived as “shy”, a “loner”, a tendency to imitate others (copy, mimic, or mask) in social settings, a tendency for social exhaustion (or as I like to call it a “social hangover”), a tendency to “camouflage” their difficulties by masking and/or developing strategies to compensate for the challenges and difficulties they are facing, a tendency to have 1 or few close friendships, a tendency to be “mothered” in a peer group in primary school, BUT often bullied in secondary/high school.
14. There appear to be better linguistic abilities, more imagination (fantasizing and spending time involved in fiction and pretend play and when observed closely the play can be observed to have a lack of reciprocity, to be scripted and/or controlling.
15. Less restricted interests/activities tend to be common involving people and/or animals rather than objects/things (e.g., animals, stationary, soap operas, celebrities, pop music, fashion, horses, pets, and books/literature), which may be seen as less recognized as related to autism. She may be viewed pr perceived as just a “moody bookworm”.
16. A lack of understanding sensory sensitivities and how they impact the ability to function from day to day. An individual may not be able to explain what they are experiencing. In particular, professionals may be more likely to view an individuals’ comments about how they perceive the world as “psychotic”, rather than sensory processing disorder or sensory sensitivities.
17. Diagnostic confusion and not asking the right questions or clarifying what the client has said, can lead to misdiagnosis. Many adult women have multiple labels or diagnoses before they receive the correct diagnosis. As mentioned previously, a lack of understanding as to how sensory sensitivities affect an individual can lead to misdiagnosis. Having a fantasy world and imaginary friends or animals can lead professionals to suspect prodromal schizophrenia in a girl or adolescent. A girl who has developed routines and rituals around food and calories, nutrition and/or exercise may be diagnosed with Anorexia Nervosa and the Asperger Syndrome is missed. Borderline Personality Disorder is a common misdiagnosis with females usually not fitting neatly in the diagnostic criteria. Furthur complications include individuals who meet criteria for both Autism and a personality disorder.
Professionals may not understand that many females have the ability to “feel” other people’s feelings and this can be quite overwhelming for them. They may not trust talking about their hyperempathy, hence they will be misunderstood. Females may not trust other people due to the ‘cognitive dissonance’ between non-verbal body language and what she “feels” off the person. In combination with social and relationship challenges, her behaviors look like Borderline traits or Borderline Personality Disorder.
Until professionals catch up with current research on females, they will continue to be diagnosed and/or misdiagnosed with:
Anxiety Disorder, Social Anxiety
The new DSM5 diagnosis of Social Communication Disorder
Borderline Personality Disorder
Intermittent Explosive Disorder
Schizophrenia or Schizotypal personality disorder
18. Cultural bias can leads to under-identification. For e.g., some immigrant women have been unable to gain an assessment as their differences in communication and behavior are not seen or viewed as unusual, but more of a ‘cultural’ difference
Even if a girl has subtler difficulties than other children with the disorder, those problems may nevertheless have a tremendous impact on her life.
Girls appear to use their intelligence and their abilities to to learn quickly how to combine non-verbal and verbal behaviors in addition to maintaining a reciprocal conversation and be able to initiate, but not maintain friendships. In combination with less to no and different restricted interests and an inability to communicate their needs, girls appear “less” impaired than they really are, especially in the school environment. Females on the Spectrum present with a “look” to them that suggest they are merely more sensitive, emotional and/or anxious than others.
Autism is particularly challenging to detect in girls, especially bright young girls, because generally there are little to no concerns at school. Typically, the Autistic female is doing everything to hide it, from using her cloaking device (hiding in a group) to blending in with the wall (hiding in the classroom) to chameleonism (adopting the social behaviors of another student or adult), allowing them to be much better socially over Autistic males but not neurotypical females. Their ability to hide their Autism is a superpower, but there is a high cost to pay.
Seen in private practice, the subtleties in bright females are abundant, from subtle clues externally (from a slight grimace in their smile to over-exaggerated body language) to social scripts (only observed if you see the girl a few times) to older children or teens who are questioning their gender (because they have always been unable to relate to their peers). Some females want to become boys, some are happy with their androgyny, some are happy to remain female and some change their gender entirely.
Observing, describing and understanding the unique presentation of autism in girls is the beginning to improve identification rates and create unique resources just for females. Understanding the heterogeneity of this group of females is also very important. In my 2nd book I Am AspienWoman, I discuss the differences and subtypes. Developing diagnostic tools is imperative as are intervention resources specifically for female
Tania can be reached for fee-for-service impressions assessments (in person or Skype), consultations, problem solving consultations and/or support, interviews and/or presentations/workshops, and/or book translations at email@example.com
Tania divides her time between full-time private practice, research and writing her books series.
To subscribe to the AspienGirl newsletter or to become and affiliate and earn 10% on all books referred, go to http://www.aspiengirl.com
To purchase I Am AspienGirl or I Am AspienWoman or pre-order AspienPowers or I Am AspienBoy, go to http://www.aspiengirl.com
For more information about female Autism or female Asperger Syndrome, go to http://www.taniamarshall.com
Future Books and Webinar Series
I Am AspienWoman releases at #29 Amazon USA, #1 in Australia (2 categories) and 1st spanish world female autism conference
Pre-orders of I Am AspienWoman paperback from the AspienGirl webstore
Pre-orders of I Am AspienWoman hardcover from the AspienGirl webstore
The book are now available on Amazon Canada and Amazon UK and the formats will become available as Amazon’s time frame allows.
Here is another sneak peek at a couple of interesting pages from the book, clients I have seen over the years.
I Am AspienWoman, Foreword by Dr. Shana Nichols, and fabulous Mentor section headed by Dr. Temple Grandin is finally here on Amazon USA! It debuted at #39 (Disabilities) and #41 (Autism and Asperger Syndrome)
To find I Am AspienWoman on Amazon:
The book is also available at http://www.aspiengirl.com
For more information on female Autism go to http://www.aspiengirl.com
About the Author
Tania Marshall is a best selling author, a 2015 ASPECT Autism Australia National Recognition Award Nominee (Advancement Category) and a 2015 eLIT Gold Medal Award winner. She is the author of I am AspienGirl(2014), I Am AspienWoman (2015) and AspienPowers. She currently works in busy full-time private practice, providing diagnostic assessments, intervention, support and problem solving consultations to males and females ages 2-76 years of age, in-person or via Skype. All inquiries to firstname.lastname@example.org
Tania is an Australian Psychological Society (APS) Identified Autism Practitioner, a Helping Children with Autism Early Intervention Service Provider (HWCA), a Better Start for Children with a Disability Provider, an approved Medicare provider of psychological services and a trained Secret Agent Society (SAS) Practitioner.