In late December of 2022, I missed a few days of work due to a relatively mild case of COVID. When I returned to the office, I quickly felt that something had shifted: I was constantly overwhelmed. My ability to process emotions slipped. I had greater food sensitivities and balance issues.
And though executive functioning skills 鈥� like keeping to a schedule 鈥� had always proved to be an immense challenge, those skills were now completely out of my grasp. Plus, I felt extreme fatigue that a full night's sleep couldn't abate.
Like those who were able during the pandemic at the height of Gov. Phil Scott's, , I had been doing the bulk of my work from home. On weekends, I was the local host for NPR's Weekend Edition and did my shift in the studio, alone.
Now, back in my office during the weekdays, I found I could no longer tolerate the very things that make up a work setting 鈥� bright lights, electronic sounds, the hustle and bustle of multiple colleagues taking up the same space; they all felt painfully amplified. Eye contact had always been hard, but now it felt impossible. Social interactions, like the simple back-and-forth of pleasantries with coworkers, were excruciating.
And most frightening for me, the skills I鈥檇 used at work for decades, like recording interviews with someone, using audio editing software and even speaking on the microphone with confidence were out of reach. Something was drastically different.
And others noticed it, too. Around the same time, we received an email from a listener:
鈥淚 have stopped listening to All Things Considered on the days when Mary Engisch is hosting. She is hard to listen to. She sounds ill-prepared to deliver the news and stumbles over her words. Long pauses between words, voice drifting off, odd cadence of ups and downs with her voice as if she's reading the script for the first time. ... Mary is not a strong example of what listeners expect.鈥�
As difficult as this was to hear, it described some key struggles that were plaguing me in the work setting. At news time, I would open up the necessary scripts and sit at the mic, feeling prepared and ready to read, only to not be able to concentrate on the sentences. My eyes would skip over words entirely, and reading numbers was suddenly a unique challenge, too; they looked like a secret code on the page, and I didn't have a decoder ring.
And even more alarming, I experienced extreme difficulties with language retrieval, as a whole. Without a script in front of me, I could not find the words needed to speak fluidly. And when I did write out scripts to help me remember what I wanted to say, even writing them was a challenge, as well.
When I could no longer wave it off to other causes, like brain fog from menopause or general stress, this note from a listener moved me to find out what was happening. And it changed everything for me.
I found through my own research, then eventually a doctor鈥檚 evaluation, that I am autistic and I have been since birth. And I found that I am far from the only one to figure this out as an adult.
Vermonters and Liz Carney also recently learned they are autistic. They shared the intense kaleidoscope of symptoms they experienced when the coping skills they had learned over their lifetime no longer worked. And many of their symptoms bloomed after returning to life and work after practicing social distancing and isolation during the pandemic.
In the lead-up to a diagnosis, Miranda Jane described a loss of skills 鈥� like being unable to manage their ADHD symptoms 鈥� as one of the catalysts for seeking out a neuropsychiatric evaluation for autism spectrum disorder.
It was as though the letters were spiders crawling all over the page.Miranda Jane
Jane said they even lost the ability to read.
鈥淚t was as though the letters were spiders crawling all over the page,鈥� Jane said.
They said they noticed other glaring changes, too, like extreme sensitivities to lights and sounds. Jane said, 鈥淢y husband turned on the light and I almost murdered him 鈥� and my favorite, softest T-shirt feels like sandpaper.鈥�
When Liz Carney tried to return to life as usual after the pandemic, she found things had drastically changed for her, too. A different pace plus new ways of working had better suited Carney鈥檚 brain. The return to a less socially isolated life proved overwhelming.
鈥淕oing back into crowded places and not being able to handle that at all, and I couldn鈥檛 tolerate certain smells,鈥� Carney said.
Carney said during the pandemic, she learned to finally feel safe in her body and to let sensory information back in that she was previously filtering, though Carney said she had lost the ability to control her reactions to that stimuli.
Around the world, more and more people are being diagnosed as autistic. This increase is due in part to a greater awareness of the condition.
According to the CDC, over 75 million people worldwide have autism spectrum disorder, or ASD. The agency found that in 2020. In 2022, that number had increased to one in 31 children. Those numbers represent huge jumps from 2002, when one in 150 kids were diagnosed. Many experts caution those numbers are likely undercounted.
For decades, autism was largely associated with boys. That's likely due to diagnostic biases and that females tend to be more adept at masking autistic traits. But as the health care world has learned to look for it in people assigned female at birth in recent years, the number of women getting diagnosed has grown, too.
What is autism?
Molly Bumpas is a clinical assistant professor at the University of Vermont, specializing in autism spectrum disorder. She says it鈥檚 defined as a type of disorder that affects how the brain functions and that, in turn, can affect how a person behaves.
Bumpas said autism involves social interaction challenges that can include difficulties with social-emotional reciprocity, or "the back-and-forth of social interaction with another person, non-verbal communication, like eye gaze, gestures, facial expressions, or difficulties in developing and maintaining relationships," Bumpas said.
Bumpas said autism can lead to extreme focus 鈥� or hyperfixation 鈥� on certain interests. And it can make people oversensitive to sensory stimulation, like lights, sounds and textures, and these characteristics are present from birth.
As autism awareness has grown, so too has the rate of adult diagnoses. Bumpas said it can be challenging to have that realization, because autistic traits may have been mistaken for other disorders over the course of someone鈥檚 life, in a kind of neurodivergent soup.
She said autism may have been diagnosed as other disabilities, like attention deficit disorder or ADHD, anxiety, obsessive-compulsive disorder or OCD or "trauma-informed things that may have happened to a person."
And even living with undiagnosed autism and not knowing what鈥檚 happening in your brain can actually spur or worsen conditions like anxiety and depression.
Miranda Jane, Liz Carney and Mary Engisch talk about being diagnosed with autism as adults
Many autistic people communicate in ways other than spoken language and may use other communication, like gestures or devices, known as , or AAC.
Many autistic people also need help navigating daily life, like requiring help with dressing, eating or toileting. They were likely diagnosed early on in their childhood, due to not having the option to mask or cover up their autistic traits.
But Jane, Carney and I use spoken language, have lower support needs, and masked our autistic traits all of our lives. We spoke over Zoom in 2024 to talk about our autism diagnoses and what led up to the discoveries.
Below is a transcript of our conversation.
Mary Engisch: For each of you, what was your knowledge of autism before your own diagnoses?
Liz Carney: Rain Man was the archetypal character. So I absolutely did not see myself in, you know, like, an almost mute savant, white male, Dustin Hoffman character at all.
Mary Engisch: Liz Carney is from Shelburne and describes herself as a mother, a friend, a connection seeker who advocates passionately in her community for those who feel left out. Miranda lives in Brandon and is a therapist.
Miranda Jane: I went to graduate school, learned nothing about autism, and, you know, really had those basic stereotypes in my head of what autism would look like.
Mary Engisch: In recent years, there鈥檚 been a lot of information about autism popping up on social media. Miranda said numerous clients were sharing things that really resonated and asking if they could be autistic.
Miranda Jane: And I was like, totally not 鈥� of course said, like, let me find out more. Like, send me the things. What are you learning? You know, let's, let's find out.
Mary Engisch: Well, after researching and then eventually seeking out their own neuropsych evaluation, Miranda found what they're calling their missing piece 鈥� and Miranda had what they and other people call an 鈥淎utiphany.鈥欌��
Miranda Jane: Not only are all of you autistic, I'm autistic, like without a doubt. There's like, a fundamental nervous system that just looks different and is just challenging in various ways that is, you know, here to stay.
Mary Engisch: Many autistic people who don鈥檛 yet know they are autistic unintentionally do something called masking, where they learn to camouflage autistic traits early on, to fit in. For example, mirroring how a neurotypical person might act in conversation, whether it鈥檚 speaking rhythm, eye contact or gestures.
Miranda, Liz and I were all masking before we figured out we were autistic. But working every day to appear neurotypical in the world can take a lot of energy.
And what we all eventually experienced 鈥� the extreme sensory sensitivities, the inability to cope with preexisting ADHD symptoms, the skills regression 鈥� that is something called 鈥渁utistic burnout.鈥�
Put simply, it鈥檚 when the combined stress of masking and everyday life stuff becomes too much to carry. And it鈥檚 one of the most common ways for adults to realize they鈥檙e autistic.
Mary Engisch: And that's something that I experienced, too. It was, things that normally I was able to do 鈥� I could no longer be in the office. I could no longer have a desk. I don't even have a desk here anymore. I was always OK in the studio, because I'm alone. But, I'm curious about burnout itself.
Miranda: I went, actually, for my neuropsych eval, because I thought I had dementia, because all of my ADHD symptoms flared. I think of that as like, a lost skill. The ways I had learned to manage my ADHD were gone. And I had zero emotional regulation.
Mary Engisch: As for Liz:
Liz Carney: I couldn't tolerate smells that used to not bother me at all. So there were like, kitchen smells, that were making me gag.
Noises put me on edge that didn't used to bother me. And I didn't have a context for this at all. And I was just talking to people about it and saying, like, am I losing my mind? What is going on?
Like, am I losing all my coping skills? And it wasn't until later that I realized that it felt safe for me to let all of that sensory information back in. But now, I had lost my ability to kind of control the spigot.
The clouds parted, the sun came down. Like, I just felt finally seen and known and understood and like, I found my people!Miranda Jane
Mary Engisch: During my conversation with Liz and Miranda, we talked about how, when and if we're sharing our autism diagnoses with family, with friends, with colleagues, and especially what we would most want them to know.
Liz was diagnosed as autistic about a year and a half ago.
Liz Carney: Right now I'm in a season of disclosing, thinking about how to disclose to my close friends and family. And when I think about how to talk to them about it, what I want them to know is, I want them to take what you know about me and say, "This is what autism looks like." Rather than to take what you know about autism and map it onto what you know about me.
Mary Engisch: Ooh, that鈥檚 good.
Miranda Jane: That鈥檚 beautiful.
Liz Carney: And so what that means for me is, like, what is it? Autism is sensitivity. Autism is witty. Autism is paying attention. Autism wants connection. Autism wants fairness. Autism wants authenticity. And all of those things are me. And that's how I'm trying to live an unmasked life.
Mary Engisch: You might assume it鈥檚 a bummer to receive news that you have a neurodevelopmental disorder. But not for many late-diagnosed autistic people, including Miranda.
Miranda Jane: The clouds parted, the sun came down. Like, I just felt finally seen and known and understood and like, I found my people! Then all of the things eventually got somewhat better.
Lauren Arcuri on being diagnosed after experiencing autism in her family
Lauren Arcuri is familiar with that, too. She鈥檚 a freelance science writer based in Hardwick. We shared our experiences over Zoom before I spoke with Miranda and Liz. After spending years around her brother and then later, her own son, both of whom are both autistic, Lauren figured out she is also autistic.
鈥�You know, there's a lot of traits throughout my family, and it all seemed normal to me. So I was identified as 'gifted' as a child. And I think a lot of what was autistic traits were lumped under, like, 鈥榞ifted and weird,'" Arcuri said.
As for receiving a diagnosis later in life, "It massively changed things for me. It was really important."
For Arcuri 鈥� not to mention Jane and Carney 鈥� finding community has been vital. That includes , a clinic based in Montpelier, centered on caring for neurodivergent people. It鈥檚 one of the only ones of its kind in the country.
"They have fostered a lot of peer connection that I think has helped me incredibly in just not feeling alone, especially in being late-diagnosed. There鈥檚 a lot of other late-diagnosed people, and so having other people around who were also just finding this out has been life changing," Arcuri said.
Like with Jane, Arcuri's diagnosis was an explanation 鈥� a reason to be a little more gentle about situations out of their control.
鈥淚 kind of went back to childhood onward and saw things with that lens that I was an autistic child, an autistic teen, an autistic adult trying to function as best I could," Arcuri said. "I had a lot more compassion for the struggles that I faced, because even though I look to the outside world like a very high-functioning person, autism or not, I'm actually not. I've been self-employed my whole life. I've carved out work that fits my neurodivergence and still struggled with it at times because of executive function difficulties that I didn't know was autism and ADHD. I beat myself up for those struggles, and I thought that I was just lazy."
Arcuri said that she is now in the process of accepting her true self in a way she wasn't able to do before.
鈥�I had all of this friction about who I was, and who I was socially and how I acted, or how I appeared in the world. And now I just feel so at peace with who I am two years in," Arcuri said.
'My autism diagnosis is the connective tissue that holds me together'
I reached out to the person who wrote the email that set me off on this trek, which led me to my autism diagnosis, in order to thank them, but I haven't heard back.
Now I'm learning how to navigate my life as an autistic person, and the discoveries occur daily. The challenging parts are learning about the various medical conditions, like hypermobility, gastrointestinal issues, TMJ and even tachycardia that can come with an autism diagnosis. And I鈥檓 beginning to grasp what that means for me as I age.
Each workday, I am coming into the office and spending time in other spaces that aren鈥檛 a soundproof studio alone. And I'm working to ensure I'm not camouflaging my repetitive behaviors or learning differences.
Before I could start the process, though, when I got my diagnosis, I distinctly remember having to go find the nearest mirror and just look at myself, look back at myself. After 50-plus years, I feel less like a pile of parts and more like the sum of them, knowing that my autism diagnosis is the connective tissue that holds me together.
This piece was edited by Kevin Trevellyan and produced by Mary Engisch with music interludes by Es-K.
