The patient, whom I’ll call “P”, came into my office with their partner. P had been diagnosed as Obsessive-Compulsive, and had been prescribed medication.
They had come to see me because their instincts were nagging them, something along the lines of “this isn’t quite right. Something’s ‘off’ about this whole thing”.
I received their initial questionnaires long before meeting them in person. The questionnaires told me almost all I needed to know.
They were SO Aspergian that it wasn’t even funny.
My first meeting with them clinched it.
P and their partner arrived, and when greeting someone in my office, especially for the first time, I try to “break the ice” by noticing their clothing and making a nice comment about it.
P was wearing a jacket with the logo of our popular home sports team.
“Oooh, the ‘Victors’ (not the actual team name)! I obviously like your jacket.” (Insert semi-self-conscious chuckle here.) My grin, as usual, was wry.
P’s partner spoke up, “actually it’s probably not a good sign. P tried on every jacket they have before finding one that fit well. The others just felt too confining. It literally took 30 minutes.”
P nodded silently in agreement. They looked haggard; it had been a frustrating morning.
I mentally clicked on the figurative icon for my Aspie/Autistic OS’s Sympathy app. Not that my empathy/sympathy wasn’t genuine; it was. But situations like these called for specific responses, in specific tones of voice, with specific facial expressions, none of which came 100% natural to me.
“Aww, I’m sorry to hear that. Let’s talk some more about that.”
P’s partner did most of the talking, which, I could sense, was much to P’s relief. P themselves would chime in to add information or correct/clarify what their partner was saying, but otherwise, P stared down at the surface of my conference table, or off into a space that only they could see.
I understood. I knew the feeling all too well.
I saw the expressions of surprise when I finally said, “I think I can help you.”
None of their previous doctors or counselors had had any answers. But they knew that it wasn’t “just” OCD (not that I’m intending to minimize or trivialize OCD, of course). They knew that the diagnosis of OCD did not explain everything that P was experiencing in their daily life.
I went on. “It sounds much more like a sensory processing issue. Where the world itself, and everything in it, is turned up too loud.”
Both nodded emphatically.
I kept going. They were all too happy to let me.
“You avoid certain foods because of their taste or texture. Certain foods make you gag. Certain clothing rubs your skin the wrong way, or doesn’t give you the freedom of movement that you need. Certain lights are too bright and certain sounds are too loud. How am I doing?”
The knowing mutual glances stolen from each other and the nodding in agreement had grown with intensity and vigor during my speech.
“That’s exactly it!” they exclaimed.
“There’s more,” I said. They already knew that. But I sensed their need for me to connect a few more dots.
“We also often like to collect things. And we feel pretty content being alone. We rely upon a daily routine; if an activity or task is not already incorporated into that routine, it gets forgotten about. It’s simply not going to happen. We are often misinterpreted; what might seem, look, and feel like anger might actually be anxiety. But neither party may be aware of that. So it gets misconstrued as a ‘mood disorder’.”
I didn’t need to ask how accurately this resonated with them. By then, they had broken smiles, and couldn’t help but laugh and cheer, “yes!” while giving each other the occasional high-five.
I could hear their inner voices. “Bingo!” “Jackpot!” “Finally! Someone gets it!”
I had their attention. “And the more stressed and anxious we feel, the less flexible we can be, and the more we need to control our environment, which gets increasingly difficult.”
More nodding, more optimism.
“There’s an upside to this thing, too. Many people with this issue also have the ability to zoom in on details, and see patterns and information that the world in general cannot/does not. Whatever you do, you’re likely to be good at. So many of us get diagnosed with OCD, ADHD, bipolar, depression, anxiety, and so on…but it never quite seems to fit. Something’s always missing. It’s not ever quite right.”
I took another step. “You’ve probably noticed that somewhere along the line, my context changed. I started using the word ‘we’… because I’m one of these people, too.”
This seemed to bring them a sense of comfort and reassurance.
“This issue never actually goes away. But by working from the ground up to restore your health in general, it can become less disabling and more of an asset.”
Three cheers for neurodiversity. 🙂
But, as with almost any adult on the spectrum who isn’t yet aware that they are, I had to take it slow.
However, I had reached the point where the rubber had to touch down on the road.
What they were not aware of was the internal brain-battle taking place within my head. It was like watching a tennis match on fast-forward.
Oooh, there’s that Professional Autism Disclosure land mine again. It could blow up on me!
Is this too soon?
It might really help them.
What if it scares them or traumatizes them?
Yeah, but it could change their lives.
If you tell them what it is, you automatically disclose your own status.
Do it. Go!
It was do or die. I had come too far in the conversation to just drop it; I was too far in to turn back.
I made a split-second judgment call, the type of which the speed at which I had to make it did not give proper respect to the magnitude of its significance.
I crossed the line of no return.
“What do you know about Asperger Syndrome?”
Ladies and gentlemen and everyone in between of the jury, I will not print the next few lines of the conversation, because they would almost assuredly pose a trigger for many. We know better about Asperger’s/autism, but the USA at large does not.
P’s partner’s answer to my initial question reeked of the usual mainstream society ignorance, which, due to the slanted hubbub surrounding the Asperger’s/autism spectrum (especially in the US), is understandable and expected. And my own initial replies to their initial answers probably reeked of ableist language and othering and probably a few other sins.
However, neither of us–P’s partner nor myself–meant any harm.
In my defense, I know that when communicating about Asperger’s/autism with people who don’t realize that they are, and thus believe that they are not, it’s crucial to meet them where they are, even if that means initially using terms and concepts that would usually make many of us recoil in horror or disgust.
Please forgive me; it didn’t last long at all, and my intentions were always good.
Please be assured that I stressed the word “initially” above for a reason. Once I met them where they were in their minds, I could build a bridge and help them across it. And please be assured that I promptly did so.
After the quick nonjudgmental acknowledgment of their incoming (mis)conceptions, I gently went on to correct their mistaken thinking, in the form of diplomatically sharing information. They didn’t even know I was correcting them or recoiling inside; they saw a professional who understood where they were coming from and was eager to help.
(And of course, getting all indignant at their initial inaccuracy was not going to help or be productive here. That’s not how to build a bridge.)
Instead, once the bridge was constructed and we had met somewhere on it, I proceeded into more familiar and Asperger’s/autism-agreeable territory. I went on to refer to the Asperger’s/autism spectrum as a different/alternative operating system, a different/alternative way of being, and empathetically-but-gently stated that there’s nothing wrong with it.
Then I introduced the Neurodiversity term, which P wrote down in their tablet of paper, brought along for note-taking purposes.
I wrapped things up by saying, “is this resonating with you? How are you doing with this information?”
After I was satisfied that they were satisfied and doing OK with the game-changer I just dropped on them, I moved forward one more step by giving them four search engine terms to run in order to get started, and cautioning them against the harmful and inaccurate rhetoric that they were sure to run into, reassuring them that the “authoritative” websites were actually some of the least accurate.
I made it very clear that I was not a specialist in this area–at least, not one with formal training or an associated degree or license. I made it even clearer yet, that I was absolutely not rendering a diagnosis of this type in any way. I went through the pros and cons of seeking a formal diagnosis versus deciding to self-assess/identify. I didn’t want there to be any misconceptions or premature thoughts/assumptions.
Then, I laid out the rest of their care plan, the part that included the efforts we could make to support their general health, and they left my office with a lilt in their step.
So far, so good!
The moment of truth, however, had not yet passed.
That would come upon us in another month or so, when they were due for their first follow-up.
I skated on eggshells.
The first follow-up dawned, and I sat down with the couple once again.
I asked the usual questions about the initial implementation of their care plan and how that process was unfolding.
Everything was going fine, even if a little more gradually.
At the end of the visit, P’s partner piped up. “So… We started looking into this whole Asperger’s/autism spectrum thing…”
I knew it was safe to smile, based on their facial expression. “Yeah? Tell me about that.”
“Well, it has been interesting, to say the least.”
P’s partner went on to explain how everything they found during their research fit so perfectly, and describe how much relief they were starting to feel. They beat me to the caution of themselves that they realized that this wasn’t formal and they were still in the early stages of investigation, so they promised me they weren’t going to get too ahead of themselves too quickly, but that it looked to be a hand-in-glove fit.
Then they asked me if I knew anyone who could take that process further, remembering that I had mentioned having been formally evaluated and diagnosed.
I gave them the name of the professional who diagnosed me in November…
…and continued to see them for their physiological health.
Eventually, P came in by themselves and did all of their own talking, complete with smiles and true bonding. It has been a beautiful and therapeutic relationship. And even though the focus is always on the patient (it’s never about me; it’s always about them), the feelings have been mutual.
Moral of the story, the way I see it: Sometimes, the neurotypical gatekeeper professionals don’t have a clue. Often, they miss a lot. Sometimes, it just takes one to spot one. 🙂
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How I came out as an Aspie/autistic to a patient ~ December 1, 2016