On Self-Disclosure During Medical Treatment

Over the past few weeks, I have had multiple encounters that have indicated that somehow my choice whether to disclose my neurology in some way has affected these such interactions. Here is one of them; the rest will follow in other posts. 

At a hospital, during a life-threatening emergent situation, my treating doctor felt it was appropriate to berate me for a half an hour regarding two complaints regarding my care under her supervision. Approaching shutdown, I asked for a break in our discussion. She did not stop, nor did the patient advocate indicate that she should. The outcome was a full-on meltdown where I went non-verbal, rocking, fists-clenched and leaving nail indents in my palms. The doctor continued insisting I needed to make choices. Verbally. I stutter-shouted “I am autistic!” At which time, she approached me, began to softly stroke my shoulder. I again shouted, “DO NOT TOUCH ME!”

As I was using items in my recovery bag, including my Willebrand brush, essential oils and a picture of my family to ground myself, I could hear her talking to my friend. “If I had only known she was autistic, I would have assigned her a sitter. I would have approached her care with more…” More what? Compassion? Attention to detail? Less berating? 

(Please note: it is in my medical records at that hospital (where I received ALL of my medical care for THREE years while living in that area) that I’m diagnosed with Autism Spectrum Disorder- it’s second on the list of my history. And, I told the nurse upon intake that I was taking one of my medications to help me with “transitional depression and anxiety associated with my autism.” I know that's what I said, word for freakin’ word. Because that is the phrase I worked really hard to come up with to explain why I’m on that medication. I say it exactly the same way. Every. Single. Time.)

Additionally, I heard every word of their sidebar conversation. I know my sweet, bedside friend initiated the conversation and moved the doctor further and further away from my bed purposely. She was getting the doctor off my back the best way she could. But during my regulation and recovery period, I heard EVERY word. I heard the doctor talking about her experience with autism. I heard her apologize that she “didn’t know.” I heard it all. I remember it all, considering I was still very unwell. 

But here’s my point: in what situation is it appropriate to base a person’s medical care on their self-disclosure of a neuro-development disorder that has nothing to do with the medical emergency? My autism had nothing to do with the fact that my blood pressure had been in the 80’s/50’s with an elevated heart rate of 120+ for most of that day. Nor did it have an effect on the treatment plan for my anemia that was approaching the stage of oxygen deprivation of my organs although the hemorrhaging had stopped. 

Is this to say that every time I’m receiving medical care from this point on, every medical professional (nurse, CNA, doctor, orderly…) to enter my presence, I need to introduce myself and follow that with “I’m autistic?” 

I mean, I’m not shy about my diagnosis. I’m not ashamed of it and I do share it when I’m being triaged. Or, I bring it up when I’m struggling to understand something. Or, when the doctor asks if there is anything that could further affect the treatment. But, this specialist that came in the ER room that day was one member of a parade of care providers in and out. Especially with me going in and out of being fully conscious.  

It all comes down to knowledge and compassion. Or lack of it. I hope that the rise of television shows that are including “outed” autistic people will help many of the neuro-typical population to understand and be educated on autism. Because this type of ignorance not only affected my treatment and mental state that night. It traumatized me while I was going through a medical trauma. And continues to with that doctor’s judgement has me questioning every interaction I have with people in the medical field since then. 

Because…one extreme adverse outcome can put my brain in a place to feel unsafe with the people whose job it is to help me be healthy. 

So, for now, I suppose… “Hi. Nice to meet you. I’m autistic,” is where I’m at when I’m being seen for a primary care appointment to diagnose a UTI or in the emergency room to be evaluated for a potential blood clot. 

But my challenge to you, dear reader…fill in the word “autistic” above with the following words: sad, obsessed with Pokémon, scared of cats, narcissistic, sarcastic, shy, fun, witty…you get the point, I think. Do those affect a person’s medical care? If so, we need to have a further conversation about this. 

Which hospital is going to be the first to have a neuro-diversity panel conversation with me? 

On a New Restaurant

Last night, Brent and I took advantage of an opportunity to have dinner out to get our calendars linked. We decided to try a new restaurant that we haven't been to before. It was large and industrial inside, exposed brick and pipes. Cold. It was bitterly cold inside. Gigantic televisions broadcasting sports in every direction. And people. Everywhere. Barely a square-foot throughout the entire place, at least where we were sitting, that didn't have people.

We ordered our drinks and meals. I got out my laptop and input dates into our calendars. We focused on that and I was able to tune out the rest of the stimuli. But when our food came, I had my laptop away. I was able to eat, somewhat. The salad I ordered was OVERLY spicy, like on fire, spicy. And, like a domino effect, the sensory input started flooding its way into my brain. I ate the best I could.

But, the sound got louder, like someone was simply turning the volume dial every few minutes. The giant TVs invaded my visual system. I covertly covered my ears at first. Trying to block it out. My foot started tapping. I wanted to evaporate into thin air.

Faintly, I could hear Brent talking to me. He was asking me to go out to the car. He said something about my eyes...I shook my head no. I was not ready to wave the white flag of surrender, that I was unable to do that particular moment. That particular place. On that very night. I wanted to conquer it and be in control at that moment.

Eventually, I think it was something like the third time that I heard Brent tell me to "go outside and wait in the truck" while he paid the bill, I submitted. He had already taken the truck keys out of his pocket and put them on the table. I picked them up, grabbed my bags and left.

I know that the oodles of staff that were at the host area did not say anything to me. I was appreciative so that I didn't have to respond. I could just get outside, where my sensory system could calm down. Where I could catch my breath and yet feel on high alert as a man walked oddly close to my "bubble" and followed me into the large parking lot that was behind the restaurant. I spread Brent's keys as a makeshift weapon between my fingers and got to the truck. Unlocked. Got in and relocked the doors. And, I grabbed Jackson's blanket from the back seat to warm myself up.

A few minutes later, Brent was with me. He was in the truck and asking if I was okay. If I wanted to do something else. I asked if we could just go home. We sat together in a moment of quiet before he started the truck. Once in our house, he gave me a big hug. I apologized. He told me I didn't have to.

But, my neurology, my differences. THEY had affected our evening together. It's as though I have become a hermit in certain instances because it's way safer to live inside the confines of my own home than to put myself in harms way.

And, isn't it interesting that whenever we go out to meals with Jackson that we try to sit in the least crowded area of the restaurant, where it is the least assaulting on the auditory system and the brain. Often going before the dinner crowd hits, we joke that we are akin to the Early Birder's these days. We make these simple changes each and every time and I never once feel saddened at the changes that we have made to help Jackson to be authentically himself and to not have situations where the insurgence of stimuli cause moments of him eloping and/or needing to stim in dangerous ways so that he could just "be" there.

So why am I so hard on myself?

Why am I so resistant to feel the need to apologize for the way I have been made?

I guess I'm just not there...
yet.

On the First Week of Third Grade

So, it is Sunday. The boys are sleeping. And it seems like the perfect time for some reflection on this week. And, I cannot possibly share my thoughts with you without you knowing the narrative. Because, it is in those very moments that you will be able to glean understanding of my take-aways, my starred thoughts.*

Monday: With great anticipation, we visited Jackson's new school. He met both of his teachers and had the opportunity to get to know his homeroom teacher one-on-one. With my guidance, Jackson went to the "All about Me" poster Mrs. H** and returned with three questions about her like I had instructed. Nervous Mama that I am, we discussed plans for his noise-canceling headphones, where his seat is, etc. until we have our Transfer ARD meeting. I felt comfortable knowing that Mrs. H has her teaching certificates in special education in addition to her early education degree. Seems like a bonus!

Wednesday: First Day of School! Groggy eyed, Jackson made his way through his morning routine earlier than previous years. He had the "normal" first day of school breakfast: blueberry muffins. We took the requisite "first day of school" pictures and we were off. Almost there, I asked him how he was feeling...one word came from the back seat. "Happy." 

At pickup, I was braced to hear the usual waterfall of disappointments, hurts and emotional release of the day. To my surprise, Jackson practically bounced into the car. "Mama, that was the best day of school ever! I got the most 'good jobs' in one day of all the days I've ever been in school!" He was literally beaming, with a smile from ear to ear. "AND MOM, we get thirty minutes of recess, that's twice as much as last year!" Who could argue with that? Exercise and play are essential parts of learning! I asked him how it was with the really loud thunderstorms that we had throughout the day, he explained he asked to get his headphones, put them on and not a single person made fun of him. 

Driving home, we chatted about our day. I asked him if he had to talk about himself in his classes. He explained that Ms. A** asked for them to tell their name, something about them, and what they look most forward to this school year. So, I asked what he said. The most unexpected, honest answer came from my child. "I said, 'Hi, I'm Jackson. I'm autistic. I'm excited for PE and lunch. Mama, everyone else said they were excited for lunch, so I said that also to make everyone laugh. They did." My mind reeled. I asked, "Wait. Jackson, you just stood up in front of your class and told them that? That you're autistic?" He said defensively, "Well, no, Mama. I didn't just stand up. I waited for my turn." Oy. The laughter-inducing Literal Leonard*** strikes again. I laughed so hard, partially because he misunderstood why I was asking, thinking that I was implying that he, at random, spouted out facts about himself out of turn. But, more so, I laughed because my heart was exploding in his comfort to share one of the pieces that make him...SO authentically Jackson...It was laid out on the table. By his own admission, on the FIRST day of school. Ironically, this piece of him was not acknowledged or even spoken of in his previous school. It was almost as though, if they spoke the word autism, it would open Pandora's Box.

Thursday: Thunderstorms continued and raged through the morning. Jackson was overwhelmed by the noise and very anxious for the 'next one.' We tried to keep the routine the same as the previous day, but he was very fixated on the storms. When we left the house, Jackson attempted to run back into the house when lightning lit up the sky. We drove to school through monsoon conditions. Both umbrellas were not in the car, so I stopped by the convenience store near the school. No umbrellas. But, I found a tarp. Yup. That happened. I parked and walked Jackson into the school with us both partially protected by a blue tarp. (We must have been a sight.) I walked him to his classroom. My fear was that if there was a clap of thunder or the lights were to go out, that he would possibly elope into an empty classroom or someplace that might seem like shelter from the storm. Furthermore, since he was there before class started, I knew he would need to go to the gym, which is in a separate building on the campus. And that there are currently no fences. This Mama was nervous for all that might happen to a frightened boy who is trying so hard to keep himself together during this nasty storm. I told Mrs. H my concerns; she asked Jackson if she could help him and have him stay with her. Leaving the school, I requested the Special Needs Coordinator to contact me ASAP, which she did less than an hour later, after having checked on Jackson in his classroom. We discussed a plan for the day until our ARD occurs. Peace. Reassurance. Understanding from the people I am entrusting my most important person in the world with.

Much like the day previous, there was the same after school reaction. "Best second day ever, Mama!" Except, he explained that in math, everyone received the same number of uni-fix blocks and got to BUILD with them. I didn't quite understand and prodded for more details. "We weren't allowed to do that last year, Mom. We had to only use them for counting. Never allowed to build with them. Mrs. H actually told us to build with them!" They all got to see what they could make with the blocks- creativity, individuality, and learning encouraged in a classroom? Happiness overfloweth. 

Friday: Same as the previous days, except this day..."This was the best first week of school ever!" And, he had received an invitation to one of his classmates' birthday party in two weeks. When I asked him what game we thought we should give her, he said, "Well, on the first day of school, she said she was most excited for math. So I think it should be a math game." Hmmm. Well done, son. Well done, indeed.

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Sometimes, this ride we've been on with our sweet, beloved Jackson has been so overwrought with the negatives. What he struggles to do. How we struggle to help him. The meltdowns and anger. The sensory overload and stimming and anxiety. It is incredibly easy to focus on the challenges, especially when you feel like you're being T-boned by a Mack Truck at every turn. Especially when the very people you've entrusted him with for his education have been so focused on his "smartness" that they've completely missed the rest of him. 

But this week, it has reaffirmed that my Mama instincts were dead-on-balls accurate (life needs more "My Cousin Vinny" references). My feelings that given the opportunity, Jackson could have the chance to shine in the complexity of all the pieces that make him uniquely Jackson, including his autism, proved true.

And then, he was so incredibly brave to put out there, in front of his teacher and his classmates, that he is autistic. That moment quite possibly might be one of my proudest Mama moments to this day. Because he is not ashamed. He feels safe to tell others what makes him different from them. My son just put it out there in a way that I have been struggling to do for the past year and a half. He is owning it not because it defines him, but because it is a vital part of who he is. How legitimately awesome of him. 

So, while I feel like I spent this summer holding my breath in fear of the unknown of this new school- new policies, longer commute, etc. I have finally been able to exhale, possibly just now. As I've put all of this in writing. Don't get me wrong, I know that just like any other school, there will be hiccups and struggles that we will face. I'm not expecting this to be all sunshine and unicorns tooting rainbows, but man...at least I will not have to spend all of those meetings, fighting for them to SEE my son, in his entirety. That is already done. And it is only the first week of school.

*"Starred Thought" was the great George Parks' way of saying pay attention; something important is coming; commit this to memory. I had the honor of attending drum major camp with him at UMASS my senior year of high school. Any time that I'm reading, writing, taking notes, if it has a star next to it, I know it's important. 

**Not their real names; changed for their privacy.

***Literal Leonard is a fictitious chap that Jackson's Occupational Therapist refers to when her ASD kiddos are taking something too literally. There is a poster of him and "Taco Head" on the wall in one of her classrooms.

Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for his feedback and make necessary changes to make this place be a safe place for him too.