Adult Autism and My Diagnosis Story

What are some traits that autistic adults might experience, especially those with late-diagnosed autism? And what does the female autism phenotype have to do with all of this? 

Topics discussed also include:

• Some of my own autistic traits, starting from infancy till now
• The impetus for seeking an adult autism diagnosis
• Looking for a psychologist for adult autism diagnosis

If you'd like to know more about topics discussed in this episode, check out:

"The Female Autism Phenotype and Camouflaging: A Narrative Review" by Hull et al.

"The Experiences of Late-Diagnosed Women With Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype" by Bargiela et al.

Episode intro music: "Upbeat" by Jon Luc Hefferman (no changes or modifications were made)

Episode outro music: "Golden Hour" by Broke For Free (no changes or modifications were made)

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Transcript

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Today we're talking about autism and adults and my own story of getting diagnosed as autistic. I was super excited to receive questions from listeners, so thank you very much for sending those in. If you have a question please check out the show notes for my email address.

So I took the questions I received and decided to poll folks on LinkedIn and Instagram about what they want to hear first. LinkedIn followers chose to hear my personal autism diagnosis story and Instagram followers chose to learn what autism looks like in adults. But the voting was very close, so I thought I would combine the top two, and I'll see how it goes. The reason I chose to combine the topics was because it's going to be hard to explain what autism looks like in adults in general, because everything I say will be put through my own level one, late diagnosed autism filter. Also, it's just really hard to generalize. Put it this way, what if I asked you what does being neurotypical in adults look like? In other words, what does being non autistic in adults look like? If you see this as an impossible question, because it is, the same is true for autistic people. We are a neuro type not a monolith. No two autistic people are the same. As they say, if you've met one autistic person, you've met one autistic person. At the same time, I understand what this question about adult autism is getting at, at least I think I do. 

First of all, autism never just arises in adulthood. It is a neurodevelopmental difference or neuro type that a person either has or does not have from birth. Though autistic traits may not be detected until later childhood or adolescence or even adulthood, absolutely the person was always autistic. They just slipped through the diagnostic cracks, so to speak. Let me just say that I can't wait for the day when we no longer use language of diagnosis or disorder, and other medicalized terminology when it comes to neuro types. But I find that it's nearly impossible to speak about autism without using at least some of this kind of language, especially in the medical research world in which I work and play, because medical everything is one of my special interests. I feel that, in some ways, I need to speak the same language that's currently used in autism scholarship, otherwise, no one would know what I'm on about. In healthcare and research, it's important for people to be on the same page, at least somewhat, especially when it comes to how things are communicated. At the same time, I do try to push boundaries and challenge language when and where I can. You'll notice, for example, that I never call autism a disorder. I refuse to say Autism Spectrum Disorder, unless I'm quoting work from researchers that use this term. I call autism a neurodevelopmental difference or neuro type.

There's also a good argument for actually maintaining some medicalized language due to the fact that many autistic people identify as being disabled, either due directly to being autistic or due to co occurring conditions they might have. And there are many documented co occurring conditions that people diagnosed with any level of autism can have, many of which are genetic in origin. So back to adult autism. When we say adult autism, we're often talking about late diagnosed autism, specifically autism diagnosed in adulthood, because it's diagnosed late and not in early childhood. It's typically level one autism, as level one autism is often seen as more challenging to detect or diagnose. Level one autism used to be called Asperger syndrome or high functioning autism. 

There are three levels of autism currently in diagnostic criteria used today. And these levels have to do with how much support the individual needs. So level one is having low support needs. Level two is having substantial support needs, and level three is having very substantial support needs. Individuals diagnosed with level three autism often have intellectual disability, require assistance with everyday functional tasks, and are not able to live on their own. All that to say, my focus here will be on level one autism and adulthood, and late diagnosed autism. Those who reach adulthood without a diagnosis have the same possible set of traits that those diagnosed earlier have, but they tend to exhibit these traits in what's been called more mild ways or they simply mask these traits. 

Masking is not done consciously, and often involves mimicking those around oneself. So this is done to fit in and hide perceived differences between oneself and others. Late diagnosed Autistics may have challenges reading the social cues of neurotypicals. The reason I specify neurotypicals here is because we typically find it much easier to read the social cues of other neurodivergent folks, and this isn't just autistic people, it can include those with ADHD, dyslexia, and others with neurodivergent diagnoses. Late diagnosed autistic people may also have challenges understanding or reading some body language and facial expressions. They may speak in direct and or monotone speech patterns, they may have trouble looking at someone in the eye or maintaining eye contact. For me, it's just really intense, the feeling is really intense. So I actually like looking at people in the eye, I just can't maintain it very well, just because I find it distracting, and some people more distracting than others. Late diagnosed autistic people may have one or more intense interests that are more than just casual interests or hobbies. They may have challenges building or maintaining friendships, especially with neurotypicals. They may have trouble regulating or expressing emotions. They may experience meltdowns or shutdowns, they may exhibit repetitive behaviors or stimming, which can include humming, playing with jewelry, tapping one's leg repeatedly flapping one's hands, turning in circles, twirling one's hair, rocking back and forth, and so on. 

They usually have sensory differences. Often, this would be hypersensitive to sensory stimuli, but they may be hypo sensitive or less sensitive to certain stimuli. And some autistic people actually have a combination of these which can change with time or depending on what sensory stimuli it is. For example, they might be hypersensitive with light, but hypo sensitive with touch or vice versa, they may have difficulty with physical coordination, they may prefer to work on work or school projects by themselves, they may experience executive function challenges such as challenges with planning, organizing, or task switching. This is when you move from one task to another, they can find it very difficult to do that. And the list goes on. 

All of this is slightly complicated by the concept of the female autism phenotype, which has thankfully had a hand in challenging some of the specifics of the diagnostic criteria and forced a reevaluation of the autism assessment tools and measures currently used in autism diagnosis. The thinking here is that diagnostic criteria are based on studies of males, usually young males with more traditional or classical displays of autism. In other words, think of the stereotype of the highly eccentric autistic person, always male, who is a savant in a certain subject like medicine, space, or computers, talks like a robot, lacks basic empathy, and has major trouble connecting with other humans. Basically, think of major TV shows where there are autistic characters. The female autism phenotype has challenged that. 

There seems to be a subset of autistic people who are kinda like the opposite of the stereotype of autism, at least in some regards, so much so that diagnostic processes are likely to miss them. In other words, they might be ultra empathetic, have fewer social challenges, and may even be highly socially motivated, have fewer repetitive behaviors and struggle mainly with sensory differences, emotional regulation, and feeling and thinking intensely. This was initially termed the female autism phenotype because it was detected in many women who are diagnosed as autistic in their 30s, 40s, 50s, or even later, but very recent autism scholarship and clinical findings are uncovering the fact that many people born male highly identify with the female autism phenotype. So it might need a name change at some point. That said, it's still a super interesting and informative topic and much has been written about it. I highly recommend a 2020 review paper by William Mandy, Laura Hull, and K. V. Petrides in the Review Journal of Autism and Developmental Disorders called The Female Autism Phenotype and Camouflaging. 

So now I'm going to switch gears and talk a bit about my story, I'm going to leave whole portions out and just try to concentrate on some of the things that I think are important to talk about here, things I know have been experienced by other people who were also late diagnosed autistic folks. So as a baby, I was born premature with club feet and really bad colic that lasted for several months. I had to have surgery and casts and special shoes and braces, like leg braces or foot braces for my club feet. Eventually, that was all taken care of. I was sensitive to things like grass on my bare legs, a feeling I still don't especially like to this day, I was fussy about certain textures and spoke very, very early. As a child, people would often comment that I was one of three things. Too quiet, too goofy, or too intense. Rarely anything in between, and rarely anything in combination. And I took that kind of feedback as something bad about me. Like I must have something really wrong with me if people comment all the time on these things. And I don't see it happening to others around me, like others around me aren't getting the same feedback constantly. 

Recent years have been all about me trying to fully embrace and celebrate these attributes about myself without shame. This means diving into these traits, not trying to squelch them or hide them. And it feels good. I know for anyone, whether neurodivergent or neurotypical, being yourself feels good. It's also healthier than trying to suppress yourself and your natural traits that you were born with. As a child, I also perseverated on things, including on memories, experiences, worries that would come up, even worries about death and dying, and especially deep concerns about my parents, pets, or friends dying. And not just like the normal worry that I think all children feel at some point or various points, but the type that made me bite my lips till they bled and have persistent insomnia. 

I also felt everything extremely deeply. I showed intense empathy or empathic responses to the point where I walk into a room and instantly pick up what others are feeling. Sometimes before the person feeling the thing even knows it or recognizes it themselves. While I say this stuff came up as a child, these things have never gone away. I'm still like this. So this is present tense as well as ways that I was as a child. I always felt like an alien. Like I was too much in some way. Too quiet. Too intense. Too emotional. Too sensitive, too analytical, too weird. Just too much. So what did I do? I learned to mask to fit in. But this was not a conscious choice. I thought it was something everyone had to do. Like this was what it meant to be human and I was just bad at it. Like I hadn't caught on as quickly as the others, like I was deficient or broken. 

Somehow, I gravitated to female peers who felt similarly and who may have been neurodivergent themselves without knowing it, and had intense friendships with them, usually on a one on one basis. I'd also hang out with herds of boys playing kickball, basketball, baseball, shooting guns, playing at the arcade, or generally being rough and tumble. There was a certain comfort around boys that I didn't feel around groups of girls, maybe because the social rules were different and more relaxed, but I also needed a lot of time on my own to retreat to my room where I could control my surroundings and be away from the noise and bustle of school and other activities. I found solitude very gratifying and was never bored. I had a rich imagination and inner life and could lose myself in whatever activity I was engaged in. I would sit and write stories or poetry for hours, draw and paint, play video games, do puzzles, or practice my instrument, which was a brass instrument called a baritone, very similar to a euphonium. I would also spend copious amounts of time outdoors by myself. My favorite solo activities included building forts with lawn chairs, bedsheets, and tractor tires, going for long bike rides, and swimming in the local outdoor pool where I would pretend I was a mermaid or pirate mermaid, or a mermaid trying to run away from a non mermaid pirate. The options were endless, everything was intense.

I cried easily, and often. Things have not changed. I still cry easily and often. And everything is still intense. I think when you grow up feeling like something's wrong with you, and feeling like you have to apologize or make things right because you've annoyed someone, or feel like you've annoyed someone, that it's a habit that even though you know with my diagnosis, I have more self compassion, way more understanding, and I can look back with a different lens, I found that very, very healing. But still these old ways are, you know, really hard to change and reprogram. I guess when I should just be like, you know, this is me, it's me. And it's okay. It's actually very cool. And we should celebrate differences. We should celebrate autistic traits because they're awesome. They really are. 

In high school, I gravitated to the same kinds of people that I did in elementary school. And because I was in Western Canada by that time, on the coast, where it's very multicultural, I gravitated to refugees and immigrants, those with sometimes troubled pasts or something about them or their histories that made them decidedly different. Unlike many of my autistic peers, I was not bullied except for one instance I can recall in junior high shortly before I moved to Canada. Who knows if that situation would have continued had I stayed in North Dakota. All throughout my childhood and teen years, I was obsessed with reading, writing, learning, and music. I kept in touch with several pen pals, would write essays about animal biology for fun, stayed up super late reading, and played records and I would watch the record spinning specifically staring closely at the needle on the record player while the record was playing. I just found this so beautiful and relaxing, hard to describe. But if you're autistic, I think you'll get it. Another thing I would do is obsessively switch between MTV, CMT, which was Country Music Television, country was really big where I was from, and VH1 and make mixtapes by recording songs from the radio. I still obsess about collecting music, but I've moved to Spotify, where they're called playlists instead of mixtapes. I can spend hours listening to music, especially in the car where I can also feel the music pulsing through my body. Because of my sensory differences, I experience this as like pure bliss, and one reason I would never ever wish to be so called normal or non autistic. 

So how then was I finally diagnosed as autistic? Well, I had a major health diagnosis in my mid 30s. And when that was resolved, I started therapy to deal with some of the fallout from that time. One day, I was talking about some of my sensory issues and also some of my other challenges that I had always taken for granted because they're all I know, and my therapist was like, oh, so you're autistic? And I was like, no. But that started the process of looking into that as an option for myself. This therapist had a grown child who was autistic and I shared many similarities. So it was interesting to hear about their experiences, I had a lot of aha moments, like a lot. It was an intense time, on top of an intense time. The word intense figures prominently in this story.

Eventually, I started looking for someone in my area who was able to assess or diagnose autism and adults. It's very challenging to find people who do this and do it well. But I was able to locate a couple of psychologists in my area who specialize in adult autism and have special training specifically in assessing autism in females. I chose one, waited a few months, and had the assessment which included detailed questionnaires and interviews, including an interview with my boyfriend at the time, and another interview with my mom. A few weeks went by, the psychologist compiled all of the information from the interview with me, the various questionnaires I filled out, and the other interviews, put it all together, and then I had another appointment with the psychologist, where they told me that I was indeed autistic, diagnosed as level one autistic. 

It's really important to find a psychologist who is very up to date in their knowledge of autism. And this is even more important, I think, if you're female or identify in any way with the female autism phenotype. I suggest reading the psychologist's website, getting an idea for their training, even calling their office and asking them specifically what they think about female autism phenotype, what their experience is, who are the people that come into their office for assessments. If they're only working with children, if they are relying on their education from the 1970s, 1980s, 1990's even, chances are, you're going to spend a lot of money and a lot of time, and you're going to maybe even be laughed out of their office. Sadly, I have heard that story time and time again, where a person goes to like the first psychologist they find either through like a referral or through their doctor or something like that, because they're in a rush to have the diagnosis maybe, which I totally understand, I totally understand. But this is something that you truly should not rush, if you can help it. Anyway, and they go to the psychologist and the psychologist, kind of like says you're clearly not autistic, you're a woman, or they say something like that, or like you're able to carry a conversation, you're able to have a stable job, you are a parent, blah, blah, blah, blah, blah, you're not autistic! And in some cases, that has happened blatantly. It's very, very sad and very troubling that that exists. And then they have to go through the process again, if they do, some of them are so hurt by that, that they just never actually pursue assessment again. 

So yeah, that's kind of the shorthand version of my story. And I guess the other thing I could add about my story was I had a suspicion several years ago that someone in my family may be autistic. So I was going through some basic autism screeners with them, which are like questionnaires online from psychology sites. I would either score as like, right in the borderline, like between neurotypical and autistic or I would score as neurotypical but it would never come up and it's like, you're clearly autistic. So I never really thought anything of it. And I knew that I was quote unquote, a highly sensitive person, which I actually think is level one autism. 

Anyway, the other thing I'll mention, while I was equating adult autism and late diagnosed autism and level one autism, I want to be clear that level one autism does often get diagnosed in early childhood or childhood. Level one autism doesn't only apply to adults are those diagnosed later on than typical. There are more and more children being diagnosed with level one autism because the diagnostic tools are getting better, and experts are getting better slowly but surely at recognizing level one autism earlier. So I just want to be very clear and leave you with that note that level one autism does not necessarily mean adult autism or late diagnosed, so it's just more likely to be diagnosed later, especially in females or those who identify with the female autism phenotype. I think that's all I have for you today. 

Thank you so much for being here. Again, if you have a question, please email me. My email address is in the show notes. 

Until next time, bye.