The Female Autism Crisis

How and why do bright autistic females fly under the professional radar?

2ScaredFemale 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 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 cannot get an accurate diagnosis, she is then often left without intervention and/or support. This is what I call the ‘Female Autism Crisis’.

Girl washes faceThere 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?

 

  1. 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.
  1. 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)
  1. 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.
  1. 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 child’s anxiety, eating issues or behaviors are the focus and the diagnosis is missed.
  • Strict adherence to the diagnostic criteria.
  • The girl does not have stereotypical repetitive behaviors.
  1. 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”.  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!

Iris_ADAPT_2-235Observing, 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 second book I am AspienWoman, I discuss the differences and subtypes. Developing diagnostic tools is imperative, as are intervention resources specifically for females.

To read more of this article and others about female autism, go to Tania Marshall’s original blog post.

For more information about the signs of autism in girls, go to Recognizing the Signs of Autism in Girls and Young Women.

4 thoughts on “The Female Autism Crisis”

  1. My daughter was diagnosed this spring, aged 13.5 whereas her younger brother was diagnosed at the age of 9. I came across Tina’s work a while after my son had been diagnosed and realised that my daughter was NOT, ‘copying’ her brother for ‘attention’ as one GP had told me… Our NHS CAMS team turned out to be great once we’d waited nearly 2 years for diagnosis. They also provided CBT to my daughter post diagnosis which has helped her enormously! I would say that my daughter lived with massive anxiety for years before her diagnosis – now she has tools to cope with anxiety (etc) and we have more knowledge so we can support her too. Her school is supportive and she now has friends and has joined the netball after-school club. I’m talking about a girl who spent pretty much ALL of her school lunch hours from age 9 in the library until this spring! Without reading Tina’s work I don’t think I would have sought the advice of the OT who specialises in sensory processing and begun seeking help for my daughter. So thank you Tina!

  2. my daughter is 11 & shes been displaying all the signs since 2/3.only a couple of weeks ago did she get formally assessed.now waiting for the results.been a long hard battle with her school telling me its my fault cos i’m a single parent & theres nothing wrong with her,social workers, CAMHS workers having exactly as described above “factual conversations for whole sessions” getting no where.its made me question my parenting abilities & feel useless.whereas my daughter has wasted all her primary sch education due to lack of recognition & diagnosis.

  3. I’m certain, after having researched for a few years now, that i am a high functioning Autistic or Aspien. I always knew i was not like my peers but didn’t know why. I have passed for ‘normal but weird’ all my life, and to the observer i’m sure i seem ‘normal’. Almost no one in my life has any idea of the struggle life is for me everyday. I’m 61, have never been officially diagnosed, and feel i’ll probably never be. It seems there is no one to address the situation of older adults who have lived with the difficulties of ASD, and that would be doubly true for older females, i think.
    Being diagnosed, and having access to support and resources, to simply be able to say to someone, when in a difficult moment, ”i am Autistic and need your understanding and help” and not be treated like a liar or a total idiot, would be an immense improvement in the lives of older female ( and male) ASDs.

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