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AutismBC Connects: The Female Autism Phenotype

Mar 9th, 2021

Kristen Hovet, Founder and Author of the website The Other Autism, a website focused on the female autism phenotype, recently took some time to share her first-hand experience with being an autistic woman, including the importance of recognizing co-occurring conditions and having an informed medical team. 

Do you prefer identity- or person-first language? 

I prefer identity-first — autistic person.

Can you explain your challenging journey to a female autism diagnosis?

I never suspected autism until one day, in 2017, my therapist mentioned that my sensory challenges were very similar to those of her autistic child. She assumed that I’d already been diagnosed as autistic. This was shocking to me, as I had taken autism screening tests online with a family member who was suspected of being autistic and I consistently scored as “neurotypical” or non-autistic on those. Autism was the last thing I would have suspected for myself. At the time, though, I was under the spell of all the autism stereotypes and myths that persist in the world and still inform many of the diagnostic tests and screeners in use today. It took me several months to come to terms with the idea and then start looking for a psychologist to conduct a formal assessment.

 

“I learned how to mask and fit in—at the expense of my physical and mental health. No one suspected I was autistic.”

 

Before that, I struggled with depression, anxiety, and low self-esteem for most of my life along with many co-occurring health conditions that I now know to be common in autistic folks. From a young age, I constantly received feedback from others that I was too quiet and reserved, too sensitive, too emotional, so I learned how to mask and fit in—at the expense of my physical and mental health. No one suspected I was autistic. Though I’d seen many doctors and healthcare professionals growing up, not one had me assessed for autism.

I always felt different, even when I learned to mask or camouflage my autistic characteristics. Coming to terms with trauma from childhood and lots of therapy gave me many answers, as did identifying as a highly sensitive person. I now think that those who identify as a highly sensitive person or HSP, the term coined by Dr. Elaine Aron, are actually autistic! The story never felt complete until I received my autism diagnosis. Reading academic texts about the “female autism phenotype” and “late autism diagnosis” felt like coming home. I’d found my people.

 

Why did you continue to pursue a diagnosis?

While I accept that others come to autism diagnosis on their own (i.e., self-diagnosis) due to lack of resources and financial constraints, I felt the need for a formal assessment with a psychologist trained in recognizing autism in those who identify as female or were born female (aka, assigned female at birth). Autism can present quite differently in those who identify as female, and the female experience of autism has largely been ignored. Thankfully, this has been changing in the last several years, but we still have a long way to go.

It was important to me to have a record of my diagnosis, on paper, that I could show my doctors. I am a relatively recent cancer survivor (diagnosed in 2015) and have recently been diagnosed with hypermobile Ehlers Danlos syndrome (diagnosed in late 2019). I think it is important to share information about the frequent overlaps between autism and other conditions so that we as a society can increase our knowledge and understanding of them. This can ultimately lead to a faster and more accurate diagnosis for many people.

Some have suggested, for example, that anyone diagnosed with hypermobile Ehlers Danlos syndrome (hEDS) should be assessed for autism, and vice versa. When I was diagnosed with hEDS six months after receiving my autism diagnosis, my geneticist told me that autism, hEDS, and mast cell activation disorder (which I also have) occur together so frequently that the three might one day have their own diagnostic label, instead of being diagnosed separately as they are now.

What did finally getting a formal diagnosis mean for you? How did it change your life and relationships with other people? 

While greater self-compassion and a sense of celebration have followed my diagnosis, there are times when I’m overwhelmed with sadness for my younger self. From a young age, I’d become accustomed to being quite hard on myself—pushing myself to just try harder in the face of exhaustion and continual burnout, and feeling awful when my differences in communication and relating to others caused interpersonal misunderstandings or offended people.

I was always acutely aware of how intensely I felt about things and how deeply I thought about various topics, and how the majority of people were not like me in these ways. I assumed all of these issues were due to a long list of personal failings on my part and I lived with this mindset for a very long time. Over time, I really learned to hide or suppress the core aspects of my personality.

In sum, the diagnosis was the beginning of major changes in how I think about myself. I’m still going through this transition, though!

 

“I’ve come to realize that the pain of camouflaging is too damaging to my sense of self and too exhausting to keep up.”

 

When I started opening up to my friends about my autism diagnosis, a handful of them related so much that they realized they might also be on the spectrum. This makes sense since neurodiverse individuals tend to be drawn to one another, and often when one person is diagnosed, several of their family members and friends realize that they may also have fallen through the “diagnostic cracks.”

In terms of how my diagnosis has changed other aspects of my life, I’d say I’m not as hard on myself anymore and I don’t mask as much. I’ve come to realize that the pain of camouflaging is too damaging to my sense of self and too exhausting to keep up.

 

Why did you create your website? 

I created my website, The Other Autism, to help spread awareness about presentations of autism that are often missed until adulthood. It’s my hope that someone might stumble upon my site and realize that they might be autistic, or someone they love might be autistic. I also want to reach healthcare professionals, to help supplement their knowledge of what’s called the “female autism phenotype” in a lot of current autism scholarship. Unfortunately, most education about autism focuses on what’s considered “classic autism,” but “classic autism” is actually the rarest form. The presentations of autism that were formerly called “high functioning autism, mild autism”, or Asperger’s syndrome are actually more common. We just think of them as less common because they are underdiagnosed.

With my website, I also want to challenge the deficit model of autism — the conception of autism as a disease or disorder. The deficit model of autism has led people to think that autism needs to be fixed or cured. I hope for a day when no one receives a “diagnosis” of autism, but instead, autism is recognized as a different neurotype that confers several advantages.

 

 
How important is raising awareness about and reaching out to those whose autism is invisible? 

It’s very important! Autistic individuals have a much higher risk of developing mental health conditions and have a higher chance of suicidal ideation and suicide. Research has indicated that those who are diagnosed later in life tend to have worse mental health outcomes. Awareness and early diagnosis can literally save lives.

What resources would you recommend for women who identity as female and believe they might be on the spectrum?

The process of autism diagnosis can vary considerably in every province, state, or country, so start by reading specifics about the autism diagnosis process in your area.

Also:

  1. Join online autism groups and forums and ask questions.
  2. Watch YouTube videos about female autism experiences, e.g., Yo Samdy Sam.
  3. Find neurodiversity affirming therapists and other healthcare providers.
    • Don’t be afraid to ask them if they’ve received recent training in diagnosing autism in those who identify as female.
    • Many psychologists and therapists are themselves autistic, and their first-hand experience of autism can help immensely.
    • I’m working on an international directory of providers who offer autism assessment and/or therapy for autistic folks.
  4. Read books about autism in women, e.g., Twirling Naked in the Streets and No One Noticed: Growing Up with Undiagnosed Autism.
  5. If you’re into scholarly works, I’ve compiled a Reading List.

 

“Awareness and early diagnosis can literally save lives.”

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