Autism Interview #164 Part 1: Kristen Hovet on the Winding Path to Diagnosis and Subtle Manifestations

Kristen Hovet is a science writer and research communications specialist, covering health research and innovation. After being diagnosed with autism at the age of 38, she set out to create a platform, The Other Autism, to speak about late diagnosis in females and on the positive sides of being autistic. In Part One of her two-part interview, Kristen shares her long path to obtaining an autism diagnosis and explains the more subtle ways autism can manifest both in herself and many other Autistic people.

Your website mentioned you saw several mental health professionals and healthcare providers who never suspected autism. What made you eventually pursue an autism diagnosis? Or how did you eventually obtain one?

I have experienced many health problems since birth. Interestingly, I now know that many of these health problems are often co-occurring with autism! I also experienced depression, anxiety, and disordered eating on and off since my teen years. No health provider saw autism in the way I behave or interact with others. No health provider thought to have me assessed for autism, until I was 37 years old.

Someone in my family who is male was actually presenting signs of autism, and so I’d been doing a lot of research into what was previously called high functioning autism or Asperger’s syndrome, but is now called level one autism. In the materials and books I read, I didn’t see myself in any of it. To show support, and out of curiosity, I completed online autism questionnaires and screeners with this family member, and I always scored as neurotypical (aka non-autistic). I even shared the questionnaires with family and friends, some of whom scored as “possibly autistic” — in other words, closer to being autistic than I was!

I never in a million years thought that I was autistic. I don’t recall it even entering my mind as a slight possibility. I know now that these experiences — never seeing oneself in autism information and scoring as neurotypical on screeners — is very common for those who present with the “female autism phenotype.” We fall right through the diagnostic cracks, so to speak, and it often takes years or even decades to get a diagnosis.

Most of the material about autism is based on research focused on males, on those with what would now be called level 2 and 3 autism, and on those who have intellectual disability in addition to autism. So it tends to miss autistic folks who present in different or “subtle” ways. This is slowly changing and not all mental health professionals have caught up with the research and information from the autism community. While great progress has been made in recent years, we still have a long way to go!

Even though in my mind I was clearly not autistic, I knew I was different and I’d always felt different for as long as I can remember. The closest I came to having an explanation was learning of Elaine Aron’s “highly sensitive person” (HSP) trait. I read virtually her entire website and bought two of her books; and the topic became an obsession of mine for many, many months. My family and friends were probably so sick of hearing about it! But I was so excited — I thought I’d found the key to finally, truly understanding myself. But something was still missing. While I fully identified with everything about the HSP trait (and still do), it didn’t explain everything. I kind of pushed any doubts aside, though, and concentrated on other things in my life.

At 34, I was diagnosed with cervical cancer, and entered the process of treatment — which for me included major surgery, chemotherapy, and radiation. Between surgery and starting chemo and radiation, I developed sepsis near the surgical site and was treated in hospital for that. It was all extremely traumatizing and came at a time when I was already dealing with other health issues, so I sought mental health support shortly after cancer treatment ended. I was talking to my therapist about my ongoing sensory challenges and HSP tendencies, and she said, “Oh, so you’re autistic.” My response was something like, “Excuse me, no!”

She assumed I might already have been diagnosed, and she said that my sensory issues reminded her exactly of her child who is on the spectrum. I’m sad and ashamed to say that I was actually offended that she thought I was autistic. This shows how much I’d absorbed the myths and stereotypes about autism that still predominate in the world. Most importantly, like most people, I’d fallen for the deficit model of autism — the one that sadly still informs our diagnostic manuals, where being diagnosed as neurodivergent is seen as something to be ashamed of, something pathological, something bad, something to be fixed, etc. Needless to say, my brain kept going back to the possibility, and I spent several months having an intense battle in my mind. Could it be?! Absolutely not! Maybe?! NO!

Since this therapist who’d first mentioned autism was not trained to diagnose autism, I sort of set aside the idea of pursuing a diagnosis, but kept it in the back of my mind until I felt strong enough to start looking for a psychologist. About a year later, I was ready to pursue an official autism assessment and found a psychologist who specializes in this field. He told me that the majority of his clients are now women in their 30s and 40s and even older! So, clearly something is changing — the word is getting out about the female autism phenotype.

The diagnosis process was quite detailed, thorough, and intense. The psychologist talked to me, my partner, and my mom, and I did several assessment questionnaires. A month or so later, I had my diagnosis! Level one autism!  

One of the goals of your platform The Other Autism is to increase understanding and awareness around “the more subtle ways autism can manifest.” Can you give some examples from your life or others you know of?

Certain characteristics or traits of autism present in me in more subtle ways, at least when viewed on the outside. For example, with repetitive movements and stimming, I don’t sway my body or flap my hands, but instead have more “socially acceptable” actions, such as biting my lips, playing with my hands and jewelry, and so on. I used to do this thing where I’d lick my lips over and over again when I was nervous, but after people commented on this, I knew it annoyed them, so it was something I was able to stop doing with concerted effort.

I’m hugely self-conscious and self-aware, and this probably goes against what most people think of when they think of autism. I’m very aware of my behaviours and the effects they have on others, and I think this is actually one of the main factors that drives masking or camouflaging — which is what many (but certainly not all) autistic individuals do unconsciously to hide their autistic traits. Once we are diagnosed, we can sometimes consciously mask to help get us through challenging circumstances. Beware, though, since masking comes at a cost. It takes a huge amount of internal resources and can be damaging to mental and physical health over time. It’s very likely one of the key attributes that leads to autistic burnout.

Some LGBTQIA folks might try to pass as straight in social situations — consciously or unconsciously — for their own safety or to gain acceptance from others. Similarly, diagnosed or undiagnosed autistic people might try to pass as neurotypical in social situations — consciously or unconsciously — for the same or similar reasons. I try to pass as neurotypical in social situations, and I did this both before and after being diagnosed, though I am increasingly more comfortable with just being myself. Masking is so much a part of my public persona that it’s hard to completely stop.

What does masking look like in me? While all autistic people are different in this area, masking for me mostly involves suppressing expression of emotion and pretending to be more social than I actually am. This might mean putting all my energy into having a stellar conversation — engaging in back and forth small talk, for example, even though I have always despised most small talk; behaving gregariously and going partying a lot more than my body and mind can handle (pre-COVID times of course!); making eye contact even though holding eye contact causes me physical pain; and so on. Masking for me also means restraining emotional outbursts of any kind — whether it’s pain, anger, or happiness. To others, when I’m masking I come across as kind, polite, reserved, and potentially even outgoing. I’ve even had people tell me they think I’m extroverted, but that usually means I’m just masking really, really strongly.

When I’m not masking, I only engage in conversation I’m interested in, so I might appear very quiet or aloof or disinterested. I’m always busy absorbing EVERYTHING, though! When a topic comes up that I’m interested in, I’m incredibly talkative and engaged, and I’m really good at back and forth conversation in those instances — without trying. When I’m not masking, I might start singing silly songs or jump for joy, since I experience emotions (whether positive or negative) incredibly strongly. When I’m not masking, I’ll look at anything but the person’s eyes. I really love talking while walking because that removes the pressure to hold eye contact. Also when I’m not masking, I’m loud and goofy and love to laugh. Or I’m intense and want to analyze a topic until there’s nothing left about it to talk about. Over the years, after being teased or having harsh comments made or watching others roll their eyes, I’ve learned that I’m supposed to rein in all of this. This is how we start masking.

To change the subject here, another less-known fact about some autistics is that some are incredibly artistic and/or spiritual. The stereotype of autism in our culture is that autistics are super logical, robotic savants. Not only are true savants extremely rare, but the majority of autistic people are NOT like this. While many of us are deep thinkers (and several of us have been labelled “gifted”), leading many of us to be quite logical and knowledgeable, many of us are actually into things I would categorize as illogical, like astrology and new age beliefs. Basically, our interests and worldviews run the gamut of those that exist for non-autistics, except we might get a little more intense about ours. Our interests may define us more, for example, than for neurotypical folks, and when these are threatened it can feel like our core identities are being threatened. I think this might be why many of us get labelled as intense or black and white thinkers. We’re often quite “married” to our way of thinking at any given time, though we are capable of changing our minds and our worldviews.

How this more artistic side of autistics might play out is that many autistics are into fashion or acting or modelling or fine arts or creative writing, and so on. I myself straddle both the art and science worlds. I am a trained actor, I’ve worked as a headshot photographer for actors and musicians, I have written fiction, I have a degree in English Literature, I love music, but I’m also a science journalist and research communications specialist working on a master’s degree in health studies. I read medical journals for fun, but I also love fashion and makeup. This is really not that unheard of in the autism community, though. While several neurotypicals throughout my life have made disparaging comments about my varied interests and I’ve definitely been made to feel bad about this, I’m finding that so many autistic folks are like me in this way.

Connect with Kristen

Website: https://other-autism.com/
Twitter: https://twitter.com/kristenhovet
LinkedIn: https://www.linkedin.com/in/kristen-hovet-9b7541194/
Instagram: https://www.instagram.com/kristen.hovet/

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