Exploring Late-diagnosed Autism

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LINDSEY WELLS, HOST: From KVMR and in partnership with FREED, this is Disability Rap.

KRISTEN HOVET: Just knowing the ways that autistic people communicate, so we tend to communicate very directly and honestly, and that can be, especially in a North American environment, that can be off-putting and unexpected, but we're not intending to be off-putting.

WELLS: Today, an exploration of late-diagnosed autism with the host of The Other Autism podcast.

HOVET: I could look back at my entire life and have compassion for myself in new ways. Having that label, I could look back and go, "Well, oh, this makes sense now. I'm living in a non-autistic or neurotypical world and trying to fit myself in it."

WELLS: That's all coming up on Disability Rap. Stay tuned.

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WELLS: Welcome to Disability Rap. I'm Lindsey Wells.

April is autism acceptance month. Today, we're honoring that by spending the show talking about autism, and specifically late-diagnosed autism. Autism is a broad umbrella for describing how some people think, feel, and act differently from what is considered typical or normal. We did a show in January on neurodivergence. Autism is a form of neurodivergence and autism is a disability.

Autism manifests in each person differently, but common experiences with autistic people are finding socializing challenging and/or tiring, getting overwhelmed in loud or busy spaces, having intense interests that you keep coming back to, and preferring order and routine. Some people use repeated motions or actions to calm down their nervous system and/or express joy and happiness. Some autistic people hide or mask their emotions in order to fit in socially. This can sometimes lead to mental illness.

For more on all of these, we are joined by Kristen Hovet, the founder and creator of The Other Autism podcast. Kristen was diagnosed with autism in her 30s. Before that, she was labeled shy, gifted, intense, sensitive, reserved, but never autistic. This, unfortunately, is a common experience, especially for women and those assigned female at birth. We'll explore why this is and what factors lead to the under diagnosis later in the show.

Kristen Hovet has a master's degree in health studies from Athabasca University in Alberta, Canada. She's currently a research communication specialist at the British Columbia Children's Hospital Research Institute in Vancouver. As we mentioned, Kristen is also the creator of The Other Autism podcast, which explores late-diagnosed autism, current autism research, and more. Our co-host, Carl Sigmond, interviewed Kristen last month.

CARL SIGMOND, HOST: Hello, Kristen Hovet. Welcome to Disability Rap. It is great to have you with us.

HOVET: Thank you so much for having me. It's great to be here.

SIGMOND: Great. As we mentioned in the intro, you were diagnosed with autism in your 30s. We want to begin by asking you what it felt like to finally get that diagnosis, was it a relief or what? Did it give a name and context to aspects of your life that may have been confusing before?

HOVET: Yes. When I first heard that I might be autistic, it was actually following-- I had cancer when I was 35. I was diagnosed with cancer. I went through that process, and I think that afterwards, I was getting therapy because, obviously, it's a huge disruption to your life. I was in therapy, and I remember I was describing to the therapist just different sensory problems I had and other challenges that I'd been having my whole adult life.

I remember she said, "You remind me of my adult daughter who's autistic." I was just like, "Excuse me," because I did not know-- I only knew the stereotypes at that point about what it meant to be autistic and autism and all of that. I was shocked that that could be a possiblity. Then I went away and thought about it, and I read some books, and then I actually thought, "What the heck, I'm going to pursue an actual professional diagnosis or assessment." Got the assessment and sure enough, I was told I was autistic, level 1 autistic, which was formerly called Asperger's syndrome.

I could look back at my entire life and have compassion for myself in new ways that I had never had before. I guess before I was really hard on myself because I never felt like I could cope or manage my life the way I can see other people around me doing. Having that label, I could look back and go, "Well, oh, this makes sense now. I'm living in a non-autistic or neurotypical world and trying to fit myself in it." Yes, it definitely opened up my mind and changed my self concept for the better. I hope that answers your question.

SIGMOND: It does. It actually leads me perfectly into my next question, which is about looking back over your life and your childhood knowing what you know now about autism, what were those signs, what were those experiences, what were those feelings of being outside the "norm" that would lead you now to say you were autistic?

HOVET: As a child, I was extremely sensitive to everything around me. I remember school being really difficult in the sense that it was always so loud and so, I don't know, overwhelming for my system. I'd come home and just reteat to my room and stay there until dinner. That was a big, big thing for me that I just didn't fit in that way. Then also socially, I only seemed to want to have one other person around. I actually was really-- I know that there's a stereotype about being autistic that we're not very social, but actually a lot of us are, but we just socialize differently.

For me, as a child, I just wanted one or two other friends around me. I was very, I guess, overwhelmed and I didn't know how to behave in large groups of girls for me. I guess I did find some acceptance doing sports because I was always kind of athletic. I found a place for myself there, but then again, especially moving on into high school, I didn't really fit in even to the sports kind of crowds. Yes, I guess it was just always feeling different, always feeling overwhelmed, always feeling, even emotionally, I would take things so, so intensely. The world felt intense to me, and it felt like everyone else was pretty chill.

SIGMOND: I want to move into one of the topics you cover on your show which directly relates to what you said, which is the underdiagnosis of autism in women and those assigned female at birth. You have an article on your website about how many people are often misdiagnosed with other mental health conditions instead of being diagnosed with autism. Can you say a bit more about that, both historically and then what the medical establishment, and for that matter, autism advocates are doing to shift that?

HOVET: Sure. Historically, a lot of the first research and work with what became known as autism was done with boys, with those assigned being male at birth. I think it's always looked different for the most part, not always, but it often looks different presented in females or those born female at birth. Let's see. In terms of mental health diagnoses and conditions, a lot of girls especially are told that they're sensitive, depressed, they're labeled with that newer label of highly sensitive person, which Dr. Elaine Aron introduced, I believe in the '90s, were often misdiagnosed with bipolar, I think is one, and borderline personality disorder is another one. Because a lot of those traits of being autistic, like having a lot of intense emotions, can look like borderline personality.

If you have a psychologist or psychiatrist who was trained using very old, outdated material on autism, and they're being presented with girls or women who are autistic, it can look very much not like what they studied when they were going through school. So they'll assign any label that makes sense to them. A lot of us grow up with different labels, but it always seems like those don't quite fit. Also, I remember reading somewhere that autistic people make up a huge number of those who stay in therapy for a long time. If you're in therapy for a long time and you feel the need to continue going, it could be that maybe you need to be assessed for autism if you haven't already been assessed and diagnosed.

What are advocates doing to shift that? I think just getting the stories out, personal stories of how people got diagnosed themselves is helping others go-- they're seeing themselves in those stories and going, "Oh my gosh, yes, that's maybe the missing piece for me." I think that's what advocates are doing is just getting those stories out for the most part and in different forms, like on social media.

SIGMOND: Then what are you seeing in the medical establishment? How is that shifting?

HOVET: Well, I think what you're getting at with that question is the medical establishment or the medical view of autism has really focused on the negative traits of autism or the negative, I guess, neurotypical view of autism, like how it's challenging and how it affects other people, but what's shifting is there's more of this view on the strengths and differences from a more neutral standpoint. How is our brain different as being autistic, instead of, how are we negatively impacted? I guess in that way, it's shifting a bit.

SIGMOND: Going along those same lines, can you talk a bit about the female autism phenotype and in what ways does autism tend to manifest differently across the gender spectrum?

HOVET: When I first started The Other Autism, before it was a podcast, it was a website, and I would mainly focus on writing. I started writing a lot about the female autism phenotype and how specifically that shows up, so autism can show up differently in females. I've kind of gotten away from that term because what I was hearing from readers and then listeners of the podcast is that they were males, and they were saying, actually, I align most with what you're calling the female autism phenotype. I've moved away from that. However, the term female autism phenotype is still used sometimes in the research. It's kind of hard. I need to still use it to get across a certain message, but yes, I'm trying to move away from that a little bit.

Basically what it means is that there's a trend, or generally speaking, female autistic individuals are a little bit different in terms of their presentation. They mask a lot more, they're high-masking, and so they're very difficult to diagnose, especially for those using more outdated forms of assessment materials. Also, females who are autistic tend to be very high in empathy, very sensitive. They can be very artistic.

I don't know, things that look like, oh, they're just sensitive and quiet and introverted, but I've heard from a lot of people that actually, yes, it's not necessarily just females. There's a lot of males who have the same kind of presentation, and they're also not getting diagnosed as autistic, interestingly. I guess the other thing I can speak about is I've heard that people who are trans are very often also neurodivergent, either autistic or ADHD or both. I've heard if you're trans and you haven't already been diagnosed as autistic, that you should consider getting assessed.

SIGMOND: I would add non-binary as well.

HOVET: Absolutely.

SIGMOND: I want to switch gears a bit and talk about the workforce, and specifically about reasonable accommodations, as well as inclusion of people with autism. I realize that each person's experience and needs are different, but I wanted to ask, in general terms, what kind of accommodations people with autism can ask for in the workforce, because especially for people without a formal diagnosis, I don't know if they would necessarily know to ask for accommodations.

HOVET: Yes, I can speak to this from my own experience. Because I was diagnosed in my 30s, so I had a lot of work experience without knowing I was autistic. I know that waking up every morning, getting ready for a job that's in an office, usually these days it's like an open concept office. [sighs] My working conditions were always too bright, too loud, too many people, too many distractions. I always, even though my work was good, I felt like I had to basically get burnt out just to do my work and to do it well. I had no idea why it was so hard for me. Obviously, later on I realized it's because I'm autistic, I have a different brain, and I can't filter anything.

For me, actually getting my diagnosis and learning, I had to learn about accommodations as well. For me, it's been working from home, primarily, so I can control my environment. I know also a lot of autistic people have things like hypermobile Ehlers-Danlos, so that can lead to a lot of physical pain, a lot of pain in joints. They might need accommodations like with different types of desks or sometimes standing desks, and things like that. Those are important accommodations. I was diagnosed with Ehlers-Danlos after my autism diagnosis, so they came, all of these diagnoses, at once.

I was told by a geneticist, there's a lot of diagnoses that come together under an umbrella. It's like mast cell activation disorder, autism, and Ehlers-Danlos. I got diagnosed back to back with all three. Mast cell activation disorder, in addition, can include sensitivities and reactions to things like cleaners that are used in the workplace, people wearing strong perfumes or just any kind of really strong-smelling body care product. I was getting hives because of cleaners and colognes and perfumes, which is separate from being autistic, but is often, like I said, seen together with autism.

Just being in a scent-free environment is another accommodation to have people ask all the employees, please don't use these products or change the cleaners, or something like that. For me, working from home has been the game changer because I don't have to rush in the morning to wake up and get ready and leave. I don't have to drive to the office. There's just so, so many things that have made my life better because of that accommodation, and I can do my work better.

Unfortunately, a lot of workplaces still have that old school mentality of like, "You can't work well unless you're part of the team physically here," and all that. It's slowly changing. I think COVID actually helped in some ways because organizations saw like, "Oh, actually, we can do work and we can be productive when we're working remotely and from home and all that."

SIGMOND: Yes, I just was thinking about COVID right before you said that, and how not only for people with autism, but for many people with other disabilities, it really opened up many, many doors to employment that did not previously exist.

HOVET: Very true. Yes, for sure.

SIGMOND: We talked about the accommodations piece, but I want to circle back to the acceptance piece. How do you think employers and colleagues can be more accepting of people with autism? There's a second part of this question that I'm not sure how to phrase well. Maybe you can help me be sensitive, but I know that some autistic people are extremely gifted in certain areas. I'm wondering how employers and teams can leverage those gifts, obviously, in positive ways.

HOVET: Well, first of all, I can only speak to this from a level 1 high-masking lens. I guess it starts from just being educated on what neurodiversity looks like, starting from the very beginning, in terms of like interviews. When you're actually interviewing candidates for a position, what are certain ways that, for example, autistic people might answer? We can either go on at length, or we can answer in very short, small, little sentences. We won't elaborate because we often find it hard to be self-promotional, and so we might need certain questions and certain prompts to get us to talk more about ourselves. I can say that from personal experience too.

I often need more questions and different questions. I know that a lot of autistic people, just from talking to listeners of the podcast and guests on my podcast, that a lot of people really don't do well in interviews, even though they're amazing workers. That whole interview process has to be updated or changed. Just having someone, part of the interview team, who maybe is themselves neurodivergent, would help so, so, so much. Then disclosing that if the person is autistic just helps us feel safer in that interview. Making the environment calm and safe just changes everything because if I'm in fight or flight mode and I'm in an interview, I'm going to do very, very poorly. It starts there.

In terms of maintaining contact with managers and teams, so colleagues, you mentioned, just knowing the ways that autistic people communicate. We tend to communicate very directly and honestly, and that can be, especially in a North American environment, that can be off-putting and unexpected, but we're not intending to be off-putting. We're not intending to offend. We're just very used to being transparent and honest. If you're an employer or a manager and you have an autistic employee, you have to expect that. If you're going to ask a direct question, you're going to get a direct response. Just things like that.

What else? Yes, just keeping that education piece and being open to hearing from autistic people. We definitely don't like feeling talked down to, and we're often overlooked for things like promotions because people assume that because we have this label that we're not as responsible or we're not as serious about our work just because of their own stereotypes. That education piece is huge. Just hearing personal stories, reading up on the latest and greatest books on autism is very helpful.

SIGMOND: My final question is, maybe you covered this about the workforce, but zooming out to the whole world, if there was one thing you would want the world to know about autism, what would it be?

HOVET: I would want to challenge the stereotype or myth that autistic people aren't empathetic. If anything, the people I meet who are autistic are very, very high in empathy, especially emotional empathy, and so we might look different. For example, when you tell a sad story, if a neurotypical tells us a sad story, we might not go, "Oh my gosh, that's so hard." We might actually sit there staring because we're so overwhelmed and there is so much going in, and we might process more slowly.

There's different things going on in the background that you don't see, but just because you don't see it and if we express it in different ways doesn't mean we're not feeling it. We're maybe feeling it even more strongly. That's a huge one that just keeps coming up over and over again. Or people feel like they can treat us a certain way because we apparently lack empathy. That's one of the biggest lies about autism, in my opinion.

WELLS: That was Carl's interview with Kristen Hovet, the creator of The Other Autism podcast. Her website is other-autism.com.

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WELLS: That does it for the show. Disability Rap is produced and edited by Carl Sigmond and Courtney Williams. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR, in partnership with FREED, and we're distributed by PRX, the Public Radio Exchange. I'm Lindsey Wells for another edition of Disability Rap.

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