My toe finally healed and then I found out I was autistic and fractured my ankle

Also, I have three therapists! This post is horrendously long.

I fell into a big black hole of writer’s block in March and I am now back to tell you, it was the worst. I had finally quit my job to write! What a dream! And then everything I wrote was dogshit. I say “the worst” knowing that’s relative, of course. I wasn’t imprisoned for a crime I didn’t commit, or covered with weeping lesions, but it was a decidedly personal humiliation when the thing I always loved doing suddenly had the allure of long-form taxes.

It wasn’t hard to pinpoint when the block appeared. It was in the middle of March and I had gotten the official diagnosis that I was on the autism spectrum.

I had no idea how to tell people about it, and very little idea of what it meant, and I needed time to figure out how to translate my feelings into words. Also, a part of me worried that people would think less of me once they knew. “Oh, everyone’s autistic these days,” my least favorite imaginary reader (LFIR) said as she closed her browser and let her thoughts turn to lunch. And I get it, it does seem like everyone’s autistic all of a sudden, but no, everyone is not, ma’am, and I did not spend three hours in a beige room moving little blocks around and answering uncomfortable personal questions just to be trendy, just so I could wear a little “I’m neurodivergent” badge and soft launch a new identity on Instagram.

But imagining my LFIR x500 was enough to keep me from writing about it at all. And really, nobody needed to know, you know? Especially when I hadn’t even told a lot of my friends. Unfortunately, not writing about this one big thing also blocked every other story that wanted a chance to come out.

SO HERE WE GO

It started when I did an online quiz one afternoon a decade ago when it was slow at work. It was the RAADS-14 and my score landed me somewhere between highly anxious and mildly autistic. Oh, how I chuckled that day! Autism? Why, the very idea!

Did I feel autistic? I’m still not sure what that even means, I just always felt a little bit off-center, I had a slightly different response to the world than other people had. It didn’t feel bad, but it definitely kept me apart. Looking back, I realize how often I waited to see how the group was reacting and then I’d try to react that way, too. “Masking,” they call it. Camouflaging. Trying to blend in. But people know, they can always tell. Kids roll their eyes; adults just don’t call you back. At low points, especially in relationships and my marriage, I felt fundamentally broken on some level, though I was never depressed enough for antidepressants, or anxious enough for anti-anxiety meds. I was just betwixt and between, falling into the cracks and disappearing into a haze of false normalcy. Then I stumbled on a quiz and it planted a little seed.

So the summer of 2023 I was casually browsing around to see what it would take to get an actual autism assessment in my town, and I discovered that for upwards of $3,000 you can get a full assessment by a specialist. I did not want $3,000-worth of anyone’s time, but with a little more digging I found that just a few miles away, on the University of California Santa Barbara campus, there was a whole autistic building, the Koegel Autism Center, and their website told me that for $750 I could have a grad student assess me in three hours and tell me straight up whether I was on the spectrum or not. Appointments were booked six months out. I figured I didn’t need a full assessment, I didn’t need accommodations from a school or workplace, I was just an older “high-functioning” lady — more of a tourist-class autistic — just curious! So I completed a brief questionnaire, put down a small deposit, and was given an appointment in March 2024.

Then I basically forgot all about it and lived my life all fall and winter, helping Jackson find an apartment and having Christmas and getting Covid and breaking my toe. Then a week before my appointment an assistant from Koegel emailed and said it was time for me to pay the rest of my fee. It was time! Yay, but also, oh no! I started getting nervous. I didn’t want to waste someone’s time. I imagined getting laughed out of the office like some neurodivergent wannabe who diagnosed herself using TikTok. So trendy, to have a social disability.

I sucked it up and paid, thinking that no matter what my results showed the people probably wouldn’t laugh. They were mental health professionals! They’d just be very, very condescending.

The assistant then sent me links to six online questionnaires to fill out the day before my assessment:

1. The Beck Hopelessness Scale

2. The Beck Anxiety Inventory

3. The Beck Depression Inventory

4. RAADS-14 (the Ritvo Autism and Asperger Diagnostic Scale)

5. CAT-Q (the Camouflaging Autistic Traits Questionnaire)

6. SRS-2 Adult Self-Report Form (Social Responsiveness Scale)

(The RAADS-14, which you can take here, is a shorter version of the full RAADS quiz, which you can take here if you’re curious. Self-assessment is very accurate, plus it’s fun! You might be autistic!)

On the morning of my assessment I forgot to bring my water bottle, and I forgot it because I was distracted by how embarrassed I was to tell Brian that I was leaving for my autism assessment. Brian had been both supportive and mildly skeptical about the whole thing, which made plenty of sense to me. I was skeptical, too! Like, why did I need this label? I don’t know, I just wanted to know. I was so nervous. My broken toe throbbed in my fluffy clog and my hands literally shook as I drove.

I found the Koegel building, parked, and shuffled into reception just before 9:00 a.m. Is everyone who works here autistic? I wondered stupidly. Should I not try to look the receptionist in the eye? The receptionist was cordial and told me to wait. I sat in a chair and looked at my phone and listened to my heart pound in my chest. Then K., the grad student, came out a door and said my name.

The assessment began the moment we shook hands. She introduced her supervisor, Dr. Krasno, and I shook her hand, too. Would a real autistic person would shake so many hands? Maybe I wasn’t acting autistic enough. Maybe I needed to ramp it up for these guys. I wanted to pass my test!

I stepped inside the assessment room and K. indicated a chair for me to sit in across the table from her while Dr. Krasno sat in a chair way back behind me where I couldn’t see her. Then the formal tests began.

Lord, so many tests. I moved blocks around to make different patterns. I memorized strings of numbers and said them back to K. I crossed out figures and identified patterns on a worksheet with a no. 2 pencil, and answered a bunch of simple math questions as quickly as I could.

Then we switched to general knowledge questions. “At what temperature does water boil?” asked K.

“One hundred degrees,” I said confidently.

“Celsius or Fahrenheit?” said K.

Oh, no. I was still so nervous. Which one was it? “Fahrenheit? Is that right?” She waited patiently for me to be sure. I tried to imagine water boiling when it was 100 degrees outside. Would it do that? No. “Celcius?” I suddenly couldn’t remember the difference. Zero degrees Celsius was -32° Fahrenheit. Is that when water froze? The clock was ticking. “It’s Fahrenheit, I think?”

“Is that your answer?”

This was taking too long. I remembered my SAT training, don’t waste too much time on one answer, keep moving. “Sure.” I shrugged wrongly.

She made a mark on her clipboard. “Who wrote Alice in Wonderland?”

“Alice Liddel!” I yelled, “Is the real-life name of the girl who inspired the Alice character in the book! Oh my god, I can’t remember who wrote it.” My title and author recall had vanished. “I know it, but I can’t remember,” I said. Keep moving. “Pass.”

It was such a weirdly pressured situation. I had to produce a ton of correct answers in a short amount of time and do so much calculating in my head. I felt like a lab rat taking a middle-grade child’s IQ test. (Part of it actually was an IQ test.) The whole morning demanded a type of almost academic stamina that I really don’t have anymore.

But not all the tests were test-tests. At one point K. said, “I’m just going to get my notes together, here’s a basket of random toys and objects for you to look at while I do that,” and I thought, I’m onto you, missy, this is cleary another test. At a different point she asked me where I was born, and I said Colorado, and she told me she was moving to Colorado in a few months, and I said, “Hey, small world, where are you moving to?” GUESS WHAT THAT WAS A TEST, TOO.

We had two short rest breaks that allowed me to sit in the lobby and stare vacantly while my brain tried to reboot, and drink a tiny bottle of water that I had to ask for because water fountains, like pay phones, don’t exist anymore. After the second break, K. started asking me questions about emotions, and oh my god. I don’t recall the specific questions, but basically I had to describe how certain emotions felt, and give definitions and examples, and all I recall was shutting my eyes and covering my face with my hands and trying to drag the information she wanted out of my soggy, soggy brain. It was strangely physical work for me, if that makes any sense, and I felt truly wrung out when we were finished.

At the end, K. told me the tests were done, but that she was curious about what made me think I might be on the spectrum. I tried to remember some recent memes I’d seen on the autism accounts I followed on Instagram. What about that content had been so relatable — was it the jokes about cycling through obsessive interests and collections, or was it the lifelong digestive issues? Taking hours to recover after socializing? Having “safe” foods and being oversensitive to noise when I’m stressed? Getting fixated on tasks and forgetting to eat? I liked rules! When I said these things out loud they all sounded so mild and fine and whatever, who cares. Everybody likes things; everybody gets tired. I didn’t know what I was doing there anymore, but K. just nodded and took a few more notes. Then she told me someone would contact me to schedule a thirty-minute follow-up appointment the next week.

I was released back into the world feeling absolutely fried. It was a relief to get into my warm car and be alone again. I turned on the engine, put it in reverse, and yelled, “Oh my god, Celsius! One hundred degrees Celsius, not Fahrenheit! Lewis Carroll!”

Later, I texted Alice to say how nervous I was about the follow-up appointment. I was sure they’d be all, Thanks for wasting three hours of our professional expertise when we could have been helping an actual autistic person.

“I get that, they’ll yell at you,” Alice said.

Yes, or else they’d be like, Oh my goodness, no. No! You’re not on the spectrum, good gracious, why would you think that? And they’d laugh. Condescendingly.

“I’m sure that happens all the time,” said Alice, “they’re hoarse from all the yelling/laughing.”

But the next week I drove out to the Koegel building and parked in the same lot and waited in the same chair in the lobby in my same fluffy clogs. K. and Dr. Krasno led me to the same room, but this time they directed me to sit on the couch and they sat in chairs facing me. A low table between us had a tissue box on it.

“Oh, no,” I said warily, “am I going to need those?” They laughed in an appropriate way for two neurotypical people, and not in a mean way. But I genuinely did not want to cry in front of them. If there was going to be bad news I was going to stuff down my feelings and then cope with them years later, as was normal for me.

K. began to go over each test one by one, giving me my scores. It was nice to be told I was intelligent and stuff, but I started to get a little bogged down in details until she finally told me that, based on their criteria, I was indeed on the autism spectrum.

Then they both looked at me. I didn’t know what to say. I definitely did not want to cry; I sort of felt nothing at all. I think it was good news? I’d passed the tests?

“Do you have any questions?” K. said.

“So where exactly on the spectrum am I?” I asked. And they laughed again! Even though I was being quite serious.

“Everyone asks that!” Dr. Krasno said happily, and then she explained that it’s not useful to think of the autism spectrum as a straight line when it’s more like a pie. Here’s an illustration:

This is not my autism pie, it’s just one I found online, but it shows you what they look at when diagnosing autism, and how a person can score high and low in different areas but still “qualify” as autistic.

I asked K. and Dr. Krasno if autism runs in families and they said yes. I told them that I thought my mom might have been on the spectrum. It was definitely possible, said Dr. Krasno; autism is highly heritable.

So what was I supposed to do now? Was there a support group to join? They looked at each other and said, you know, we’ve been talking about that, but we don’t have the budget for it. Dr. Krasno said she could send me a list of books to read, but the assessment was all they really offered for adults like me. She said she’d be happy to talk to my therapist, if that would help, so I took her business card. And that was it. I stood up, thanked them very much, and went out to the warm cocoon of my car again.

I didn’t know how to process that I had a thing with a name and identifiable characteristics. I didn’t want to go home. I sort of wanted to go thrift shopping and just look at things and not think about anything. Instead, I sat in my car and texted Alice and she basically held my hand for 30 minutes and reassured me that I was fine.

Regular fine, not sexy fine, but you know, maybe still a little sexy fine sometimes.