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
Eating Disorders
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 tania@aspiengirl.com
Tania divides her time between full-time private practice, research and writing her books series.
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For more information about female Autism or female Asperger Syndrome, go to http://www.taniamarshall.com
Future Books and Webinar Series
Every day I am more and more grateful for my excellent diagnostician, while being increasingly frustrated for other women who have not been so lucky with investigations