Labels are a weird thing.
When you feel comfortable with yourself, you often don’t see the need for labels. Why label something? Why label anything? But the more you step outside the realm of what’s viewed as “typical,” the more you want to know what you are. If I’m not “normal,” what am I? Or maybe “typical” and “normal” are the wrong words, so let’s use the word “default” instead. Kind of like when you open a video game for the first time, you’re presented with the “default” option for character creation; that’s how life can feel. There’s the “default” option, and then there’s the rest of us, trying to figure out how we fit in, and that’s where labels become important.
A while back, I wrote about two of my labels: “bisexual” and “demisexual.” Both of those deviate from the “default” setting: heterosexual. The first thing most of us are exposed to in life, and the sexuality that describes most people, is heterosexual. That doesn’t mean that there’s anything wrong with not being heterosexual, but it does mean that if that word doesn’t describe you, you want a word that does describe you. And so, there are labels.
Labels that we talk about a lot in our family have to do with neurodivergence. Both of my sons are autistic; my oldest also has ADHD, we suspect my younger son will probably have that diagnosis when he’s a bit older as well (he certainly has the impulsivity for hyperactive type); my husband recently got a diagnosis of combination type ADHD, and I’ve been sitting here for years, calling myself autistic because it’s the label that best fit my experience with the world.
It still does, by the way, but things have gotten much more complicated.
Self identifying as autistic is a controversial thing, and people can get pretty cranky about it. The assumption is that some people claim an autism diagnosis–especially online–for various types of clout or as a kind of “get out of jail free” card. I’d say that neither of those things happen nearly as often as the cranky folks like to claim, though being an old on today’s internet, I can’t know for sure. It’s been my experience, though, that at a bare minimum, those who self-diagnose as being autistic don’t do so on a whim or for funsies, but because they’ve done as much research as they can reasonably do and have found that the diagnosis resonates with them… and because getting professionally diagnosed can be pretty difficult, especially as an adult and especially as a woman.
My own path to self diagnosis–and eventually, an unexpected diagnosis, but we’ll get there in a minute–started when my younger sister was diagnosed with Asperger’s Syndrome in the late 90s. She was 10 before anyone suggested that she might be autistic and 12 when she got a diagnosis (for comparison, Isaac was diagnosed at 19 months, and Sammy was diagnosed at 7).
As my family learned more and more about autism (which, note here: Asperger’s Syndrome has been reclassified as simply being part of the general autism spectrum disorder list, at least partly because the diagnosis was created by a literal Nazi who wanted a classification for autistic people who were functional enough to avoid the gas chambers. The more you know~), we started talking about “autistic tendencies,” which isn’t a thing, but it was what we had to describe ourselves at the time. A lot of this involved talking about the more overt signs of autism that would tip off a neuropsychiatrist or two: stimming, rigidity when it came to schedules and behaviors, social awkwardness, sensory sensitivities, picky eating, echolalia, communication struggles, etc. None of it was ever severe enough to warrant assessments for my brother or I–we were mostly good students, albeit socially awkward with terrible time management and a penchant for not doing homework, but nothing about us raised flags red enough that our schools suggested diagnoses for us. As far as anyone told us, we were “normal.” Quirky, but within the “default” range.
The trouble is that no, I was not “normal” or “default,” and I knew it. Which is something I want parents to internalize because I’ve read and heard before of parents not wanting their kids to be diagnosed with something because they don’t want them to have that label or go through life thinking that they’re different. Your kid knows they’re different. They know that their peers do certain things more easily than they can. They know where they struggle. They know that they aren’t the “default” setting, and disallowing that label absolutely does more harm than good.
Because, you see, when nobody tells you that your brain works differently, so of course your experience with the world is going to be different, you assume that the problem is that you’re just not good at being a person. Which is where I was for most of my life. It was like other people had been given a manual on how to do certain things: how to read between the lines of conversations, how to not bump into walls or trip over thick clumps of air, how to recognize when it was their turn to speak or not go completely silent in an echoing cafeteria or restaurant. They knew by default the order that things should go in, they knew how to pay attention in class without doodling and how to do their homework all the time. They knew how to make and keep friends.
And then: me. Socializing has always been an uphill battle for me. I don’t know when to say something or what to say or how to say it, particularly when talking to people face-to-face, unless it’s a conversation with a set sort of script (for example: “Doctor, I’ve been having worse and worse migraines for the past several months, and I wondered what we could do about that?” “Yes, I’d like to return this blanket because I accidentally ordered it in the wrong size.” “What time should I drop off my kids for this activity?” “What would you like us to bring to the Christmas party?”). I struggle to read between the lines of conversation, so those unspoken messages that are such a huge part of communication (some researchers say it’s at least 55%) go right over my head. I can write well, but most other academic pursuits are a struggle, and I can never get my homework done. I bump into walls, I trip over thick clumps of air, I sprain my ankle walking off a one foot stage platform. The louder the environment, the quieter I am. I fiddle with my hair, pick at my skin, bite my nails to nubs, pull out my eyebrows. I walk on my tip toes all the time, especially when I have bare feet. I hate wearing jackets, and I only started trying new foods once I hit adulthood and wanted to impress Kyle when we started dating (and by “impress” I mean that I didn’t want him to find out yet that I was a weirdo who subsisted on butter noodles and chips and salsa).
(which he did eventually find out, but only after I made myself look cool and default by eating ribs and drinking Dr. Pepper)
The explanations for these things ranged from physiological (“you walk on your tip toes because you have a short gastrocnemius tendon in the back of your leg and need physical therapy”) to complimentary (“you’re an absolute genius writer and breezed through the style class, which nobody has been able to do in years”) to insulting (“well that was stupid, why would you even think to put the papers in that order?”) to cruel (“you are lazy and terminally unprofessional, and unless you learn to shape up, you will never succeed in your career”), but they all seemed to boil down not to a difference in brain function but rather to a deficit in my behavior or personality, something that I could change, but I simply wasn’t for reasons that nobody could pinpoint.
And that’s a blow and a half to your self-esteem. It’s one thing to know that you struggle in areas where others seem to excel quite easily, but to have those struggles blamed on your own personality deficits is pretty brutal. And worse, I didn’t know how to repair these supposed personality deficits, because nothing I did–nothing anyone else did–seemed to work. Punishments, scolding, yelling, training, therapy, encouragement… it all seemed to go in one ear and out the other.
Which is why, when I started thinking that maybe, just maybe, I didn’t have autistic tendencies but actually had autism proper, it was like a weight slowly being lifted off my shoulders. It seemed that maybe I wasn’t bad at being a person, that maybe I hadn’t missed out on receiving the “how to human” manual. Maybe my brain just works in a different way from other people’s. Maybe I’m not “default” and bad at it; maybe I’m autistic and perfectly fine at being that.
It took a while of digestion to start accepting it, and I don’t think I really embraced the idea of being autistic until around when the twins were born, perhaps a little while afterwards. At that point, I’d left yet another job being scolded for things I didn’t realize I was doing wrong or things I was doing wrong but had no idea how to properly fix. I ended up with three straight years of being a stay-at-home mom without much of a break, save for my kids’ therapies, and that was enough time for me to start really looking at myself and accepting that hey, this is who I am. This explains so much about me. This is a label that I want to have.
The trouble is, of course, that self-diagnosis doesn’t get you very far. You can talk about being autistic, but at the end of the day, it’s your interpretation of things, and I wanted it to be solid fact, set in stone, I’m autistic and if anyone has a problem with that, they can eat my shorts. When I took my oldest to his assessment, the pediatric neuropsych politely looked at me and asked if I’d ever been assessed or considered it. I said that I hadn’t and she said, “hm,” and wrote things down, and it got the wheels turning.
I talked to my therapist, my prescribing RN, and my primary. The former two were enthusiastic about giving me references, while my primary, who is “meh” at the best of times, remarked, “I haven’t seen anything in your behavior that would suggest autism to me, but I’ll see what I can do about that referral.” Which, okay, I’ve learned over the last 35+ years of living on this planet that if I appear too weird, I may as well exile myself from society at large and go live in a cave; and what’s more, doctors only see me when I’m coming in with the prepared “doctor” script: “hello, I am dealing with [problem] and would like [solution].” It’s rare that they see me unmasked and unscripted, so. Okay.
(the doctor who has seen me unmasked and unscripted is my OB-GYN because he has performed two surgeries on me, one of which I followed by telling him–while high on fentanyl and ketamine–that I loved him)
The referral process was, to put it mildly, exhausting. I started it roughly two years ago, and it’s been a lot of back and forth with insurance companies, doctor’s offices, neuropsychiatry departments, more insurance companies, more doctor’s offices… about a month ago, someone from the neuropsychiatry office called to say that they didn’t accept my insurance any longer (which sounded fishy because it’s one of the largest insurance providers in the country) and that they’d put me in a file and I could call back if I ever changed insurances. I hung up, started to have a breakdown, and then she called back saying that she’d misread the file, and about a week later, I had my appointment scheduled for the day before Valentine’s Day.
And it almost didn’t happen. This past Friday and Saturday, I got hit with congestion and sinus pressure so bad that I thought I was going to lose my mind. I took a Covid test that I thought looked faintly positive (blame all my years trying to conceive for that one) and started to internally panic because rescheduling this assessment would be another enormous ordeal. Thankfully, though, subsequent tests came back blatantly negative, so I went ahead on Monday, even though I’d only gotten three hours of sleep and had a crushing headache.
I was apprehensive from early on, as I was told there would be a written portion to the assessment, and I had no idea what that would entail. The neuropsychiatrist mostly made me feel better, since she had a welcoming personality and was very straightforward about everything. She asked me questions about my history, my family’s history, my health, and then asked what I was looking for in the assessment. I explained that while I was fairly certain I was autistic, I wanted confirmation that no, I’m not just bad at being a person, that maybe there’s something else going on. She understood but also explained that even if she thought I was autistic, she likely couldn’t give me that specific diagnosis. As it turns out, insurance companies aren’t terribly keen on covering autism assessments once a person has turned eighteen (because, as we all know, the autism flees the body at midnight on the eighteenth birthday), so in order to get a proper assessment as an adult, you have to find a neuropsychiatrist that doesn’t take insurance and pay for it out of pocket, often to the tune of thousands of dollars.
This is, of course, absolute horse shit. Which is the neuropsychiatrist’s assessment as well.
“What I can do,” she said, “is give you an idea of anything else that’s going on in your brain that might contribute to the things with which you struggle. We’ll do an I.Q. test, and then I’ll have some questionnaires for you, and while I won’t have the full report ready for another two to three weeks, I’ll try and at least give you my impressions before you leave today.”
Fair enough, I thought, and we began.
The I.Q. test was by far the longest portion of the assessment, and while I have my own thoughts on I.Q. tests as a whole (they have a racial and class bias and don’t really test inherent intelligence so much as opportunity), it was an interesting experience. We started with the verbal portion–memorizing lists of ~15+ words, naming as many animals or words that started with S as I could, defining words, explaining relationships between pairs of words. I knew I did well there; the neuropsychiatrist kept humming and saying, “oh wow, I don’t think I can spell that one,” which are generally good signs.
Then we moved on to less verbal things, and I started to flop. She listed off a series of numbers for me to repeat back, and I think I did alright. Then she listed off a series of letters and numbers (like “192AQM7KD0217B”) and had me tell her how many numbers were in the sequence she’d given me. I had to read a page of the words “red blue green” in various orders; then I had to look at a page where each line was one of those colors and list the color given; and then I had to look at a third page that also had the words “red blue green” but each word was a different color from the word and I had to name the color and not the word. I had to look at patterns of increasing complexity and find the missing piece to each pattern. I had to look at shapes and choose the three puzzle pieces necessary to build the shape. I had to do complicated connect the dots puzzles and draw abstract shapes from memory. I had to look at a computer screen and press the spacebar whenever I saw a letter except the letter X.
(I didn’t do well at all on that one)
Once all of the I.Q. testing was done, I did the written portion, which was ultimately just self reporting on depression, anxiety, ADHD, and autism symptoms. And then the neuropsychiatrist tallied all of my scores and gave me her impressions.
The first impression she had was that she was comfortable diagnosing me with inattentive type ADHD. This basically means that while I don’t have the impulse control issues or hyperactivity associated with ADHD, I can’t focus on things to save my life–which honestly tracks with literally everything. I was explaining last night, for example, that while Kyle is an excellent DM for our D&D campaign, I cannot stay focused on just the game to save my life. I can’t focus on TV shows without having something to play with in my hands. I can’t do work without having something open in a second screen (which drives my managers bananas). My mind wanders frequently and far, and it always has, and the trappings of ADHD as a whole–struggles with time management, executive function, and rejection sensitive dysphoria–are things I’ve been familiar with for a very long time.
It’s not surprising that I was never diagnosed with ADHD as a kid, as I grew up in the 90s, and ADHD wasn’t something they looked for in girls back then, especially if it lacked the hyperactivity and impulsivity component. I have zero impulsivity and like to sleep (and always have), but distractibility is my personal demon and has been since I was a kid. Still, I got decent enough grades that I managed to slip under that particular radar and stay in the honors and AP class setting throughout high school, so nobody really thought much of the doodles in the margins of my notebooks or the fact that I couldn’t finish homework to save my life. The real struggles were ones that people either chalked up to me being lazy/not math brained (read: failing out of trigonometry) or me just being shy and socially awkward. And neither of those are things associated with ADHD or really treatable with medication, so it didn’t ping the radars of any teachers, parents, or doctors.
(which I want to make abundantly clear: because my ADHD and NVLD, which I’ll talk about below, present differently from what people expect, I don’t blame anyone for not seeing them for what they were; I just accepted them as being personality deficits for the longest time because nobody knew better back then, but knowing better now is part of my own journey towards healing and living a better life)
I have the option to treat my ADHD with stimulants, but I’m holding off for numerous reasons, not least because right now, the gold standard medications for ADHD are very hard to find for reasons nobody can quite explain. I think I do eventually want to try and medicate, just to see what magical things I can accomplish when I can actually focus for more than thirteen and a half seconds a time, but I don’t want to start only to immediately start dealing with withdrawal. I’ve done that with my antidepressant, and it’s ugly. Instead, I’m mostly using this to inform my life. No, I can’t pay attention. A fae creature at one point said, “Can I have your attention?” and I stupidly gave it away and now it’s gone forever. Give me accommodations so that I can make your life better.
Outside of inattentive ADHD, the neuropsychiatrist said she felt comfortable diagnosing me with something that’s somewhat controversial because it’s not yet in the DSM (The Diagnostic and Statistical Manual of Mental Disorders, basically the guidebook for neuropsychiatry and psychology) but that she felt fit me rather well. It’s called Nonverbal Learning Disorder, and it basically does the opposite of what it says on the tin: people with NVLD are excellent at verbal expression and comprehension but really struggle with almost everything else about learning and existing, especially things in a visual/spatial context and things in a social context. People with NVLD tend to be very well written and well spoken but they also tend to be clumsy and not understand a lot of social cues or rules (like rules that might define professionalism in the workplace, for example). So for example, someone with NVLD might be able to write you the most beautiful letter you’ve ever read but then will get completely turned around trying to get to your house because they couldn’t read a map. They have extensive vocabularies but get tied up when it comes to puzzles and math. They express themselves beautifully but don’t read between the lines of a conversation.
NVLD is a disorder that’s come up a lot more frequently since Asperger’s Syndrome was removed as a potential diagnosis for people who have similar symptoms. It’s often an alternative to an autism diagnosis when neuropsychiatrists look at autism from a framework of always meaning a struggle with communication and excellence in visual and spatial (and often mathematical) fields. And at the same time, it’s often comorbid with ADHD, autism, and a whole host of other learning disorders.
And I guess I’m of two minds about it. On the one hand, I do feel like the NVLD covers a LOT of my issues when it comes to schoolwork and work work. It’s something I wish I could have on a piece of paper and take back to my high school trigonometry teacher and shove it in his face, like, “SEE???” It makes my learning methods make sense, where I’m not necessarily bad at things that aren’t language, but where language is concerned, I utterly soar while with everything else, I stroll along at a normal pace.
But I also don’t think either the ADHD diagnosis or the NVLD diagnosis cover everything. I still don’t have a lot in the way of talking about my sensory difficulties, how I can’t talk in loud restaurants or how wearing socks makes paying attention five thousand times harder. While I’m not as rigid as either of my sons (because heaven forbid our daily schedule look even slightly different for either of them), I do get tense when things change unexpectedly, more tense than you’d expect someone without specific neurodivergences to get. I think that I am autistic, and while the NVLD may be a more specific flavor of that autism, it’s autism just the same.
The thing was, too, that the neuropsychiatrist explicitly said that she wasn’t qualified to diagnose me with autism anyway, that she didn’t have the necessary training to recognize that, particularly in an adult. So whether or not I am autistic remains something of a mystery that I don’t really have an answer for, and that is, in no small part, because of the way health insurance functions in this country.
But I have some answers. Some labels. I can request specific accommodations that will help me in specific ways. I know that I’m not simply bad at being a person, just my brain is operating on a different system, and while that may be a disability (and it is, in a lot of ways), it also gives me something of better insight into who I am, why things in my life have happened the way they have, and what to expect going forward.
And that’s not the worst outcome by a long shot.