Why are you interested in a diagnosis?
The first time I saw a psychiatrist I asked her about a diagnosis, particularly for autism, ADHD, and OCD.
“Why do you want a diagnosis?” She asked.
I didn’t have words to describe it, not fully. I’m still trying to figure out how to describe my feelings on the topic — that’s probably why I’m writing this post. It’s only when I start writing about something I’m struggling to articulate, that I find the words to articulate it.
When she asked me why I wanted a diagnosis, I think I told her about my son. It had been about two years since my son was diagnosed with Autism and three since his ADHD diagnosis. I told her about the relief I felt upon being given a name for something I’d know, but didn’t have words for. I’d known Thad was different ever since he was a toddler. I’d suspected he was on the spectrum for awhile before his diagnosis and there was a relief to finally having someone really see my son, recognized the things I’d seen in him, and be willing to help.
I told her how the diagnosis also helped the people around us understand Thad better and have more understanding for him.
Then I told her what had happened for me, personally, after that diagnosis. I’d started reading up on things and stumbled across some information about women on the spectrum — how it looks different, how rarely they’re diagnosed — I felt a familiarity with the information I read. Like stumbling on your own face reflected in a mirror.
I didn’t articulate any of that as clearly as I did in the last few paragraphs. I stumbled and stuttered and eventually she just said. “I’m going to recommend a few books for you to read on neurodiversity.”
I devoured those books and went searching for more.
I read:
On The Spectrum: Autism, Faith, & the Gifts of Neurodiversity;
The Power of Neurodiversity;
Life on the Spectrum: A Guide for Girls and Women;
But You Don’t Look Autistic At All;
and half of Autism in Heels: The Untold Story of a Female on the Spectrum (I didn’t finish this one because I grew tired of the author constantly saying how smart she is).
I also read novels written by women on the spectrum with autistic main characters — like Helen Hoang’s books. Bryan and I read a lot of the non-fiction books together. We talked about experiences I’d had throughout my life, about the ways I’d always felt different, weird, broken.
After about a year of seeing this psychiatrist, talking through the books that I’d been reading and how relatable I found them, I asked her again about a diagnosis.
“What does it matter?” She said.
She went on to tell me a story about some famous psychologist who had a kid come up to her after giving a talk on Autism. “I’m autistic,” the kid said. And the psychologist responded by saying, “No. You aren’t Autistic. You are you. Tell me what you love, what gets you excited. That’s what I want to hear about.”
That was the moment I realized this psychiatrist and I landed on very different sides of a debate that often happens about the merits and downsides of labels.
Here’s what I think: until we can name something we can’t truly understand it. Names and labels give us a way to claim identity. They give language to complex ideas, allowing people to understand each other, connect, and discuss things that are difficult to put into words. They allow people to identify with one another and find belonging.
Can labels and names be used negatively? Absolutely. But, they don’t have to be. They can often be incredibly beneficial.
To name something is to recognize it, see it, understand it.
I’ve been searching for that my entire life. Being known, seen, understood.
After realizing that the psychiatrist I was seeing was never going to give me a diagnosis, I started seeing a new psychiatrist. There were other reasons for the change in practitioners, as well, but the difference in ideology was a big one.
When I went to the new psychiatrist I was prepared. Or, at least, I thought I was.
I went with a five page list of spectrum indicators I’d been gathering through my readings. I broke the list down into categories: Sensory issues, relational issues, executive function issues, routine/repetitious behaviors, stimming behaviors, special interests, and other random indicators, including on-line tests I’d taken that, though not diagnostic, did indicate I was likely on the spectrum.
This new psychiatrist asked the same question the old one had, “Why are you interested in a diagnosis?”
I still didn’t have words to articulate all that was behind that desire. But, I had this experience with the former psychiatrist fresh in my mind.
I don’t remember exactly what I said, but I stumbled through something about being pro-diagnosis rather than anti-labels. I told her that I always thought it wasn’t great for people to self-diagnose because it can dilute the meaning of a diagnosis. Like when people say, “I’m so OCD.” And labels become part of the vernacular and lose some of their weight.
She didn’t say much to that and I didn’t look at her face, so I don’t know her reaction, but I picked up on something unpleasant or stiff in her that made me self-doubt and shut up before even attempting to explain more. I still have no idea what that was about.
“Are you interested in neurologic testing?” She asked.
I told her I was and she told me that wasn’t something she does, but she could refer me to someone. I felt a little disappointed, but grateful that she’d at least told me upfront that she wouldn’t give me a diagnosis.
We went on to talk about other reasons I decided to see a psychiatrist, focusing mostly on the last ten years. I liked her. She was much warmer than the last psychiatrist I’d seen and she listened well.
When I told her about some of the OCD-like behaviors I was struggling with and how much they were affecting my family, she really listened to why I didn’t think it was OCD and she was the first person to articulate what she thought it was (basically, a trauma response resulting from my already high need for control and rigidity) in a way that really resonated and rang true for me.
She glanced over my list of spectrum indicators, but only really pointed out how many sensory issues I had on the list. I wish I had the presence of mind to bring up the Intense World Theory from Henry and Kamila Markram, which essentially says that autistic brains are more sensitive to stimuli, and have a stronger response to stimuli, making the world more intense for them. It’s a sensory-first approach rather than a relational-first approach — taking into account the fact that this centers the autistic experience, rather than the experience of neurotypical individuals who notice the things that are “off” in the autistics relational responses.
In her book But You Don’t Look Autistic At All, Bianca Toeps says that the Intense World Theory “doesn’t just explain autistic people’s hypersensitivity, but also their apparent in-sensitivity and limitations in social communication. We close up in the overwhelming storm of stimuli, like a computer that freezes when you give it ten different tasks at the same time. Then our hyper-fanatic brains make sure we remember that scary, nasty experience very well and will try to avoid it in the future.”
But, it wasn’t until I got home that I even thought of mentioning a sensory-first approach to diagnosis. My brain was too frozen up. My attention narrowed to just the question at hand. I always freezes up in situations like that, when I’m put on the spot, expected to respond to a lot of questions; having to think on my feet; blocking out the stimuli around me; trying to interpret the other person’s words, body language, and expressions; constantly trying to figure out what the other person is expecting or wanting from me in that moment; and trying to anticipate what’s coming next. So, I didn’t mention it.
She told me I might benefit from seeing an OT, which showed she, at least, took the sensory issues seriously. But, then she said something to the affect of, “It seems like you’re doing fine with the noise and bright lights right now, focusing and following along with me. So, it’s fine in settings like this?”
I said something to the affect of, “I guess so.” But, I could feel my body tightening up, responding in its own way to the question.
Again, it wasn’t until I got home and completely crashed — to the point where I struggled to even make sentences — that I realized it wasn’t really fine. I was using massive amounts of energy to tune everything out. And I was stimming the entire time. Bouncing my leg and taking my ring on and off repetitively.
When I went to leave, I asked her for the recommendations on neurological phycologists who would do testing and diagnosis.
She basically said, “Let’s get you back to baseline and get your nervous system calmed down first.”
I nodded along in agreement, but left wanting to cry. I absolutely understand the need to deal with one thing at a time. To adjust one variable at a time. To not test things in abnormal states with skewed variables, because it can affect the test results. But, I felt like what I was telling her about the research I’d done and my lived experience were, if not dismissed, at least, pushed aside and minimized.
It wasn’t until hours after I got home that my brain was functioning enough to realized we’d mostly only talked about the last ten years (since they’ve been pretty packed full of overwhelming things) and I hadn’t even touched on the struggles I was already having long before. I could see how that would give her the impression that a lot of the issues on my indicator list where just from my nervous system being on hyper-drive.
She’d even given me the opportunity to talk about other seasons of my life or other issues, twice asking, “Is there anything else you think I should know?”
Both times, my mind went completely blank. It was like my body was a storm, my leg bouncing, my hands ringing, my nerves on edge, but my mind was the center of that storm, so still and numb and quiet, I couldn’t think a single thought. So, I told her, “Not that I can thinking of. No.”
And I went home.
I spent the rest of the day so tired I couldn’t do anything but read. I spent most of the next few days ruminating on all the things I’d done wrong in the appointment. All the things I’d said that weren’t quite accurate. All the things I hadn’t said that I should have said. All the frustration about how I always get like that when in those situations. I freeze up, or spill out information in a way that doesn’t really do justice to what I’m actually feeling or trying to say. I spend tons of energy trying to guess what the other person is thinking, trying to anticipate what they want me to say, what the right response is, how they will respond to my response, and what they might ask next. It’s exhausting.
I felt broken and frustrated. Wondering why having a normal conversation is so impossibly hard. And beating myself up, because, I know next time will be the same. Even if I go in prepared, with all the things I want to tell her already figured out. It’ll sill be the same. It always is.
I also spent a good portion of the week asking myself what I really think about diagnosis. Why do I keep pursuing one, at the expense of my comfort and money?
A lot of the Autistic people I follow, and have talked to, are completely comfortable and encouraging of self-diagnosis — especially for women. The thought is that most people who self-diagnose as Autistic don’t do it on a whim. They do their research. Often they do enough research that they actually know more about the nuances of Autistic women than the phycologists who would be diagnosing them.
I’ve also read enough to know that the neurological tests that my psychiatrist recommended are highly skewed towards the male experience.
So, why do I keep doing this to myself when I am relatively sure that I am on the spectrum?
I think the thing I keep coming back to is authority. I don’t believe I have the authority to do this for myself.
I’ve always devalued my own voice, knowledge, and intuition, while overvaluing the voice of people in positions of authority over me.
I often won’t openly disagree with a boss, even when I’m given the opportunity to, even when I’m certain they’re wrong (I’ll just go home and vent to my husband in private). I didn’t correct teachers, speak out in class, or miss steps in instructions. If a doctor wants me to do something, I’ll do it. If I’m in situations where I’m uncertain who has authority, I feel uncomfortable and awkward. And I only really feel comfortable being myself, or asserting myself, if I’m 100% certain I have authority or expertise on a matter — and I’m viewed by others as the one with authority or expertise on the matter. Otherwise, I defer, I cower, I submit.
The truth is, I haven’t even wanted to write about neurodivergence, or the potential that I might be on the spectrum, because I didn’t feel like I had the authority to even suggest it. At least, not openly. Maybe to a few close friends. Sure. I have shared about what I’m reading, which included a lot of books on neurodiversity. But, I haven’t felt like I could write about these things (like I am now) until an authority figure told me I was on the spectrum. Because I didn’t feel like it was my place, like I should insert myself in the conversation when I didn’t have proof. When I hadn’t checked all my boxes, dotted all my eyes, and had it signed off on by an authority figure.
But, I realized something this week. Maybe that’s a big part of why I want a diagnosis — so that I can write about it. Because I can’t fully process something until I write about it. And for some reason, for me, I don’t feel like I’ve really processed even in writing until I’ve shared what I’ve written. That probably goes back to that longstanding desire to be seen and heard.
Ultimately, this all probably stems from that desire to be seen and heard. Even my choice to not write about it until now. Even my seeking a professional diagnosis. It all comes back to not feeling like my voice has value.
So, consider this blog post my attempt to blow a hole in the part of me that says I have to stay quiet. No one wants to hear from me. I don’t have anything to contribute to the discussion of woman and autism. I’m not an authority. I can’t say anything until I’m certain. I can’t speak up without a piece of paper giving me permission.
This is my attempt to call bullshit on all of that.
It’s taken me three years of research and reading to get here, but I’m done keeping my thoughts on any of this hidden away. I’m going to write about it. Because this is how I learn to articulate what I think.
I don’t want to stumble over my words anymore when someone asks me, “Why do you want a diagnosis?”