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'I was exhausted trying to figure it out': The experiences of females receiving an autism diagnosis in middle to late adulthood"

Read about the experiences of late-in-life women diagnosed late in life. 

Finding the True Number of Females with Autistic Spectrum Disorder by Estimating the Biases in Initial Recognition and Clinical Diagnosis

Could there be more females than males on the spectrum?

The Female Autism Phenotype and Camouflaging: a Narrative Review

For a deep dive into the Female Autistic Phenotype, check out this article. 

Physical health of Autistic Girls and Women: A Scoping Review

The body keeps the score! 
 

Females with Autism: An Unofficial List

Here's a concrete list of how autistic women go through life.

Divergent Mind: Thriving in a World That Wasn't Designed for You

This book is based on a paradigm-shifting study of neurodivergent women.​

Girl in Piano Class

Woman on the Spectrum


Overlooked in Childhood


As the field of neuroscience continues to develop, there is an ever-increasing consensus among researchers that autistic women are dramatically undercounted. Well-intentioned, parents, teachers, and counselors often miss the opportunity to identify women on the spectrum. There are two major reasons for this unfortunate situation:

Reason 1

Girls Masking in Childhood

Even though girls may share many core traits of autism with boys, they often react externally to it in dramatically different ways. One difference in how boys and girls react is the degree to which they mask their autistic traits.

 

Masking is when a person puts on a “mask” to look the way others expect rather than show up in the world in a way that is natural and genuine. You can think of masking as camouflage. In other words, wearing something on the surface so you will not be noticed, yet fearing that you will be discovered. 

 

As compared to boys, girls are more capable of “masking” their social deficits. One theory that explains this superior female masking capability is that girls on the spectrum have innate “social mimicry skills” which enable the girls to more easily "fake it". Unfortunately, the mimicry usually operates at a superficial level, causing the girls to still miss the deeper emotional understanding. Also, social masking is harder for girls to pull off than boys since neurotypical girls often have more nuanced social and emotional dynamics than boys.  

Furthermore, girls are often more motivated to mask than boys. There usually is less parental and peer pressure for boys than girls to make social connections so the boys put less effort into it. The expectation for social connection can be intense for girls so they may put all their energy into “fitting in”, even though doing so may feel completely unnatural and leave the girls exhausted.

In summary, girls on the spectrum may look different than boys in the following ways:
 

  • Higher levels of pretend play
     

  • More mimicking of role models (without understanding the real social meaning)
     

  • Suppressing natural tendencies (such as special interests) to fit in
     

  • Acting quiet or shy at school (to fit in) but melting down at home (due to the emotional stress of masking during the day)
     

  • Special interests for girls may be focused on imaginary animals (unicorns), real animals, crafts, environment, appearance and celebrities as opposed to computers, video games and transportation for boys (although these commonly crossover)
     

  • Suffer from emotional bullying as opposed to boys who experience physical bullying (again, these cross over)
     

  • Girls are more likely to internalize anxiety leading to depression while boys tend to behave more aggressively or have meltdowns
     

  • For a more exhaustive list, see Tania Marshall’s blog.
     

This masking behavior can come at great cost, creating a constant worry of “Am doing it right?” and “Will I be discovered to be a fraud?”; thus, leaving many autistic girls feeling highly anxious and emotionally exhausted.

Reason 2

Male-centric Clinical & Research Focus

There is a second reason that girls/women are overlooked for ASD diagnosis. Since the early days of recognition of what was called Asperger’s (now ASD), the research was largely conducted by male researchers on male patients. The fundamental assumption was that autism was primarily a condition that belonged to males. Accordingly, the criteria for diagnosing autism and the methodologies for assessment became biased to identify male clients.

This framework leaves many women outside of or on the borderline of the parameters for a clear ASD diagnosis so they end up without a diagnosis and little hope for a healing path forward. Even worse, they may be misdiagnosed as having ADHD, Major Depressive Disorder, General Anxiety Disorder, or Obsessive Compulsive Disorder. As expected, a misdiagnosis may lead to suboptimal treatment and extreme frustration and disappointment.

Differences Continue to Adulthood

Of course, young girls grow into women and the unequal treatment continues into adulthood along with the emotional struggles.

Here are a few examples of how adult men and women present differently in adulthood:​

  • Adult autistic females are more comfortable than their male counterparts when interacting on a one-on-one basis. The women may often report that they have a few friends but would typically meet with them individually, not in a group. Men on the spectrum often report no friends.
     

  • Adult autistic females are more likely to find a romantic partner, often putting a lot of effort (masking) in order to overcome loneliness. Men on the spectrum typically have more difficulty navigating the rules of romance, although this may be offset by lower expectations of romance from men.
     

  • Adult autistic females are more likely to have the primary responsibility for parenting than autistic males. In spite of the pleasures of being a parent, children have never-ending emotional needs which can be confusing and overwhelming to a woman on the spectrum.

Real Struggles

Given the forces that lead autistic girls and adult women to be overlooked and under-supported, many females believe that something is fundamentally wrong with them, thus feeling sad, lonely, and defective. These difficult emotions may lead to serious mental health conditions in women.

 

In fact, studies show that women have more struggles than males on the spectrum including higher levels of anorexia, social anxiety, and self-harm. Still, men suffer as well, having a higher incidence of hyperactivity, conduct disorders, and stereotyped (repetitive) behaviors than autistic women. It is worth noting that these more typical male conditions are more visible and thus may contribute to the males being noticed, most often during childhood in the classroom, and thus receiving a diagnosis.

How We Can Help

Although our support is always uniquely crafted to your personal needs, the work often ends up with some combination of the following:

  • Understanding the strengths and challenges of your differences
     

  • Consideration of a formal diagnosis
     

  • Building a life centered on healing and self-acceptance (freedom from shame)
     

  • Making peace with your past
     

  • Finding and practicing of constructive patterns of communication
     

  • Building a plan for reducing social anxiety
     

  • Discovering emotions and how they can be helpful
     

  • Managing sensory stimulation
     

  • Understanding and building relationships
     

  • Exploring sexuality in light of your differences
     

  • Understanding the impact of your differences on professional, relational, and life goals
     

  • Support for related issues such as depression, ADHD, overwork, anxiety, and addiction
     

  • How to support other neurodiverse girls and women

There are many benefits of focused therapy for neurodiverse women but, perhaps the most important, is to provide a safe and non-judgmental place to discuss your experiences. We look forward to hearing from you.

Childhood
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"Male" Research
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ADHD Screenings

Autism in Women: How My Late Diagnosis Allowed Me to Fully Accept Myself (@potentia.neurodiversity)
26:17

Autism in Women: How My Late Diagnosis Allowed Me to Fully Accept Myself (@potentia.neurodiversity)

Hi, I'm Alex, newly diagnosed Autistic and Chief Experience Officer (CXO) of the Neurodiversity Foundation. Like so many Autistic women, I had no idea until much later in life. As a result, I spent so many years 'camouflaging' as a coping strategy to blend with my environment - which means I copied the traits of others as a survival mechanism just to get through social situations and overstimulating environments. I had no idea why certain things in life felt so much more difficult for me compared to my peers (cough cough - it is because I was trying to make myself be Neurotypical and live by NT expectations, which I have since shifted to my own Neurodivergent expectations!). Learning I am autistic has been completely life changing. I was in months of what I now know is called "autistic burnout" because my body became physically unable to mask and blend at the rate I was pushing myself. This burnout was a blessing in disguise, because all the while I was shifting my expectations of myself internally to match the person I REALLY wanted to be and the life I truly wanted to live. My story has unfolded on tiktok over the past 7 months, you can check it out here (I have documented the whole process through my tiktok videos): https://www.tiktok.com/@potentia.neurodiversity?lang=en The Neurodiversity Foundation is built by the Neurodiverse for the Neurodiverse. All of our community projects are evaluated through a lens of empowerment, meaning we take a strengths-first approach, so individuals feel proud of their identity rather than limited by it. As the Chief Experience Officer, I work to conduct research around the lived experiences of autistic people first-hand. My ultimate goal is to provide an empowering, educational and comfortable experience for Neurodiverse Individuals through Neurodiversity Foundation community projects that are engaging, validating and positive. This video is inspired by our Diagnosing Women Project which is aimed to improve the currently limited access to autism diagnoses for (AFAB) women by 1) guiding late-diagnosed autistics through the ‘biodata’ collection and self-assessment process through a strengths-lens to determine whether or not they should proceed with a diagnosis and 2) creating a registry of providers who have been ‘community approved’ as having proper knowledge around the subject. Here are the links to the online Autism screening assessments referenced in the video: RDOS Aspie Quiz: https://rdos.net/eng/Aspie-quiz.php RAADS-R (The Ritvo Autism Asperger Diagnostic Scale-Revised): https://www.aspietests.org/raads/ CAT-Q (Camoflauging Autistic Traits Questionnaire): https://embraceasd.com/tags/camouflaging-autistic-traits-questionnaire-cat-q/ You can find me on Instagram and on Linked In here: LI: (Alexandra Pearson) https://www.linkedin.com/in/alexandra-pearson-40ba69140/ IG: (@alexpearson10) https://www.instagram.com/alexpearson10/?hl=en
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