We need you to get to the point.
The moment in my formal autism assessment that made me have a meltdown.
Welcome to the weekly newsletter for Eternally Existential where we communally contemplate anything from the sacred to the absurd.
We’re working through a series where I’m sharing the process of being diagnosed autistic later in life at age 36. You can catch up and read the previous articles here: Part 1 and Part 2
I made my way into the neuropsychologist’s clinic with ten minutes to spare before my scheduled 8am appointment for my official autism assessment. However, because of the kerfuffle in their scheduling software that told them I was supposed to have my appointment over telehealth, I had 45 minutes to regulate in their waiting room while the doctor and test administrator made their way to the clinic.
I could tell who the doctorate student assigned to administer my assessment was as soon as she walked in. With a quick pace, heavy breathing, a large backpack on her back, and scattered papers popping out of a binder she carried in her hands, as soon as she walked in the door she was on a search for someone…me. She asked the front desk a question and I saw them point over to me. She hurriedly made her way across the waiting room to me and introduced herself, profusely apologetic.
“Hi, Hannah! I’m Sarah1 and I’ll be administering your assessment today. Dr. J2 is on her way and should be here soon. I’m so deeply sorry for the mixup but I promise everything will get settled soon and we’ll be on our way.”
She excused herself to go set up the room for the assessment and within fifteen minutes she came back for me and led me through winding hallways to our assessment room.
The conversation as we navigated the hallways and into the small room was incredibly pleasant. If we were in any other situation, we would have hit it off as friends. But I was conscientious of the setting and maintaining professional patient/doctor rapport. But because we seemed close to the same age and started talking about similar interests, the professional line blurred very quickly and I had to keep myself from info-dumping and asking curious questions about her life.
I don’t know how a neurotypical brain works in these types of social situations but the way my brain works is like this:
It’s as if I’m forced to be an observer in my social interactions. I show up as the authentic me regardless of the social dynamics, but when I make a point of connection with someone and the conversation feels mutual and natural, my instinct is to completely drop my guard and engage with every ounce of my person - mentally and emotionally - with the other person. If I do, and that intensity is reciprocated, I have the potential to leave feeling like we’re the best of friends. Or at the least, the beginning of a genuine friendship.
But 37 years of learned social behavior, heartache, awkward conversations and awkward moments with others, has allowed me to collect enough data in my brain to analyze the dynamics of a social situation to be able to navigate accordingly. For example, if there is a power dynamic in the situation, I am hyper aware and make my choices based on it. Or if it’s been a parasocial relationship, I’m intensely mindful of maintaining that boundary. So while the authentic and engaged me shows up to my interactions with other people - before, during, and after every interaction with that person, I’m continually analyzing the social dynamic to try to make sure I participated according to the appropriate social rules.
This makes me both a participant and an observer in my interactions with my fellow humans. With my closest people, there’s less of this because we’ve established a mutual, loving relationship. But in a social situation where power dynamics are at play, or there’s a level of professionalism to maintain, or if I don’t really know the person, this is the protocol happening in my brain. I don’t know any other way. It’s exhausting but I know it’s also the gift that makes me incredibly in tune with myself, others, and the nuances of engaging with people.
This protocol was running through my brain the entire assessment, from the moment Sarah brought me to the assessment room up until the point that I left. Once Dr. J arrived, my internal observer was on heightened alert. Actually, my internal observer was running the show because I felt like they were analyzing my every single move and word. I felt like my entire personhood — who I inherently am — was under a microscope.
On top of being hyper aware of the social dynamics, I was so intensely aware of how I was being perceived throughout this whole process. At one point the pressure felt like so much that I couldn’t not address it. I confessed of how hyper-vigilant I felt and how panicky it was making me. They seemed genuinely empathetic as they assured me that they had nothing but the best intentions toward me and my process of getting to this point and that they had no judgement of me. I felt that kind of nurturing through the whole process.
We wound our way through topics and activities I knew they were observing for specific reasons I was unaware of. They made me feel seen, heard, and validated throughout the entire process. This was both a gift and a curse because it waged a war inside to both unmask while maintaining the professional social boundary. They made me feel seen and listened to my loquacious answers to their questions. I’m not one to accept a question or statement at face value. Some, yes, if it’s needed or appropriate. But if there’s room for speculation, I enjoy taking that route. There are so many variables in any given conversation that contribute to how much I choose to divulge my intense appreciation for words, concepts, their meaning, and the nuance they all carry. (This is what makes writing a fulfilling practice for my soul)
My level of investment in a question/statement depends on the amount of emotional labor I want to divulge in conversations with others and whether or not what I have to say will be received or appreciated by the other person in the conversation. This is where my assessment had potential for a quick downhill turn.
The trouble with such a clinical approach to something as intrinsic to a person’s sense of self as being autistic, is that it lacks nuance. Especially when it comes to diagnosing an adult who has years and years of experience living as autistic and learning to mask in order to be socially acceptable. Remember, the diagnostic criteria has been based on straight, white boys and much of the assessment feels like the questions are meant for straight, white boys.
And I am not a straight, white boy.
So when I’m asked:
Do you enjoy being around people when it’s not about something you’re interested in? (Why would I be involved in something that I’m not interested in? And who are the people? Are they strangers? Why would I be around strangers in a setting that I’m not interested in? Or are these people important to me? Because if they are important to me and the “something” is important to them, I’ll support them and show interest even if it’s not an interest of my own.)
Are you good at explaining things to others? (What do you mean by “things?” I can explain many “things” and I can’t explain many “things.” Please define “things.”)
Do you have difficulty understanding things that are said to you? (The word “things” is too vague. There’s a difference between having difficulty understanding quantum mechanics and difficulty understanding 1+1=2, or difficulty understanding why you can yell “fire” in a crowded building. Also, do you mean to conceptually understand or to physically hear, process, and understand?)
Do you find that things you say upset people? (Sometimes things NEED to be said and people need to be upset ie; addressing racism, misogyny, sexism, ageism, ableism. I can’t control how other people receive what I say; I can only control what comes out of my mouth. Again, define “things.”)
These are a few examples of an overarching theme I felt from several of the paper tests I took and from the questions Dr. J and Sarah asked me directly. I feel I have too much life lived and am aware of too much nuance to accept these kinds of questions at face value. There are more layers and variables I felt we needed to work through and clarification that needed to be made before I felt I could give an answer I was comfortable with being documented. If I answered them without clarification or expounding on my reasons or disclaimers behind my answers, it felt like a betrayal of myself.
I did the best that I could to balance the reality that they were doing a job while also advocating for myself by pointing out discrepancies in the lack of nuance. Even though the rapport between myself and the two clinicians had been positive and validating, the turning point where my panic and anxiety was activated came because a simple answer was expected from what I considered a deep, profound question.
“Why do you think people get married?” Sarah asked.
It takes my breath away even now to think of how profound this question is. I know most people don’t see that question as profound. I know it’s not normal that I do. I know I’m in the minority. And I know that it can be annoying that I can’t accept a simple question or statement without question.
I thought, “Why DO we accept marriage as normal? Marriage looks different and is made official differently in every society and culture so how can I be inclusive of all humanity in my answer? Why do we specifically select another human to make such a profound commitment to? And why - in today’s society’s - is a government-delegated certificate the highest form of respect and acknowledgement of this commitment? It hasn’t always been this way. So isn’t marriage a made up concept anyway for the purpose of making rules that are specific to the society we live in? I want to look at the concept of marriage over the span of time; It hasn’t always looked the way it does in our modern society. Why can some people get married while others have been denied this man-made right? What is the definition of marriage they are asking me about? Is it about the marriage certificate or is it about the monogamous romantic commitment to another person?”
I paused, with these depths of thought swirling inside of my mind, growing in intensity like a hurricane over a warm ocean. I paused for what felt like forever, in order to try and best articulate my answer. But my thought spiral was taking longer than normal and I began to awkwardly feel the silence between us. I could feel them staring at me waiting for my answer. I did my best to collect my thoughts and they began to come out a frantic, jumbled mess. I rarely do thinking out loud well.
“My whole concept about marriage came from being raised in the Evangelical church and was formed around purity culture but I’ve done a lot of undoing around the idea of marriage so this question has a lot of weight for me—“
Dr. J cut me off.
“Are you able to answer, ‘why do you think people get married?”
Silence.
I felt like I had the wind knocked out of me.
She cut me off. I felt like my process of getting to the answer wasn’t important to her. Like I wasn’t important. In that moment my humanity was taken away and I felt like I was being pathologized. A topic that has been such an intense personal journey of mine for the past three years wasn’t important. They just wanted the final product that I still didn’t know how to quantify.
I shut down. In two seconds I went from being perfectly fine and sociable to wanting to crawl into a hole. I squeezed out as best I could, an answer to the question.
“People get married to have a witness to their lives.” I said.
“Thank you so much.” Dr. J replied with a kind smile.
I lost all of my affect. She wasn’t mean about it. She just cut me off. But with that abrupt interruption, all of the rapport we had built in our short time together was gone. I was now an impenetrable brick wall. Otherwise, I was going to break down into tears. The energy that left my body from the deflation felt like I had just finished a triathlon.
I tried to maintain my composure but it was quickly slipping away. Unfortunately, the next question Sarah asked me was, “Do you feel lonely?”
“No.” I said as I visibly choked back tears. “I don’t feel lonely.”
I tried to cover my tears with humor as best as I could; “That’s a really unfortunate question to have to answer because I don’t want you to think I’m crying because I’m lonely. I’m not lonely. I’m not crying about that.”
“What are you crying about?” asked Dr. J.
“What just happened in the moment before with the marriage question. It hit me really hard when you cut me off.”
“Do you need a moment?” asked Dr. J. “We haven’t had any breaks so we’re happy to take a break to give you some time.”
“Yes, please.”
They directed me to the restroom and as soon as the door shut behind me, I broke down in sobs.
“WHAT JUST HAPPENED?!” I asked myself. WHY the HELL did I respond like that to being cut off?! Sure, it felt abrupt and I could logically tell that she did it because they needed to move through the assessment. But my body didn’t care what rationale my mind could come up with. I was completely disregulated by the interaction.
I turned the sink faucet on to a cold blast and placed my hands underneath. I leaned my stomach on the edge of the counter and took deep belly breaths to feel my stomach lift up and down off the countertop. I looked around and named several tangible objects in my surroundings. I took my cold hands and placed them on my face, then back in the icy water, then on my neck, and back in the icy water again…until I began to feel grounded. I avoided looking at myself for fear I’d see my reflection and begin sobbing again. I couldn’t spend my time at this point analyzing the reasons behind my reaction. I needed to get my body under control. I just wanted to settle down so we could finish the assessment.
It took maybe ten minutes for me to regulate and gain my composure and I made my way back to the assessment room. I was so embarrassed that I had an emotional episode over something so seemingly small on the surface but I figured since I had nothing to lose at this point, I’d ask Dr. J directly.
“Did you cut off my answer because we needed to keep moving through the assessment?”
“Yes. I’m sorry for upsetting you but It’s also my job to make sure that we stay on track here.” she replied.
“I understand. I’m usually an internal processor but I was feeling safe enough to process externally but I can see how where I started my answer, it wouldn’t have been clear that I was genuinely trying to get to an answer to the question. I’m really trying and I’m mindful of the respect for time. But is there a way to not cut me off so sharply?”
She was empathetic but firm. “I can do my best. Can you trust that I have your best interest at heart but that I also have a responsibility to keep the assessment moving?
I genuinely felt her care for me and the tension that she was holding between her advocacy for both me and the process.
“I’ll trust you. But I also don’t know how I’ll react. I’ll do my best though.” I replied.
“Fair enough.” she said.
This abrupt emotional impediment stole my energy for the remainder of the assessment. Our mending the tension did help restore a small percentage of my affect and I made it through the rest of the assessment, giving what little I had left.
At the end of the assessment, I had a few more physical paper tests to take. While Sarah went to grab more paperwork for me to complete, Dr. J sat with me.
As she gathered her notes and put her belongings in her bag she spoke. “I want to affirm in you that I can tell that you’ve done so much internal work to heal your trauma. You have a tremendous amount of wisdom, heart, and love and I know that all of it was hard-won.”
Tears pooled in my eyes. I nodded.
“You should be so incredibly proud of yourself. I’ve seen a lot. Not many people in life take the hard things that they are faced with and choose to learn lessons from them in order to grow. You’re doing that. Keep going.”
I smiled, “You’re speaking my language. The hope that nothing is in vain is what keeps me going in life.”
“Absolutely nothing is in vain.” she affirmed.
It was quite a juxtaposition between our tense moment earlier and this tender moment now. We looked at each other for a moment with an unspoken appreciation for our paths having crossed when Sarah came back in the room with a stack of test booklets. Dr. J gathered her belongings in her arms and stood up.
“It was an honor to meet you, Hannah.”
“You too, Dr. J.”
She left the room and it took another hour and a half of paper tests by myself before I officially finished my assessment. Sarah and I said our goodbyes, I walked out of the clinic, and the second I got in my car I began shaking. I was relieved, sad, happy, emotional, hungry…an open wound of hot nerves and an assortment of conflicting emotions that, had I taken the time at that moment to process, I would have needed someone to come pick me up.
I gathered myself enough to start driving home but my mind was on fire reliving every single second of the process over and over again, especially the moment Dr. J cut me off that threw me into a disregulated state. I tried to suppress it by reliving the very sweet, tender, affirming moment we shared at the end, but the painful emotions from our negative interaction was bubbling like a geyser. I didn’t want to have to explain the events, the pain, and the process over and over again to my people so I opened the camera on my phone, placed it in the cupholder, and pressed record.
That was when the pressure and anxiety I felt building since the moment I woke up that morning finally exploded.
To support my work, please consider sharing this article, subscribing, or upgrading to a paid subscription.
Like my writing but can't commit to a paid monthly subscription?
Follow on socials
Instagram | Bluesky | Threads
Her name wasn’t Sarah. I changed it to protect identity.
Her name wasn’t Dr. J. I changed her name to protect identity.