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 Neurodiversity Training

In the efforts to educate the workforce and schools in our culture, I have personally heard anecdotes and read articles on places having experts come in to do inclusion training. While a worthy intention is there: to establish an environment of understanding and compassion, it misses the mark when sweeping statements are used without care. Man, I take issue with the way some experts going about these trainings.

I have been processing this thought in my mind for years now. It grates on me particularly at this time of year as we approach April and "Autism Awareness Month." So, I'm taking to writing about it to head off some of these well-meaning trainings before they occur. I'm sure many are already in the planning stages as April is only two months away.

One expert explained "everyone has a little autism" in them during one of these trainings. "Do you notice the buzzing of the light sometimes and it annoys you?" she asked. "Have an itchy sweater on that distracts you? That's your own little bit of autism."

Whoa. This is where Neurodiversity training goes off the rails for me. It is as simple as this: autism is a complex medical diagnosis that not everyone qualifies for; similarly, everyone does not find themselves under the treatment for chronic illness or autoimmune disorders because they experienced a single moment of discomfort that is similar to the larger, more exhaustive diagnosis.

Simply said, everyone does not "have a little bit of autism in them." That would be like me saying, "everyone has a little bit of psoriasis" when you have dry skin or "that's your little bit of rheumatoid arthritis" referring to your achy joints after a workout. It is...just...Not. True.

Autism is a spectrum disorder. Yes, the neurotypical (aka: person without autism) falls on that spectrum, but at the stark end of having none of the insistent symptoms that most of the time occurs within an autism diagnosis. Sure, people may find certain sensory or social situations uncomfortable, but that does not make them autistic. Not even a little bit. They may have special interests or hobbies that rock their world. Nor does this qualify them for such a statement.

Going back to those medical diagnosis's- chronic or autoimmune disease are the extreme, rare cases of a collection of specific symptoms that may include itchy or dry skin. May include moments of sore joints and discomfort. But, there are spectrums that exist within the specialties of dermatology and rheumatology, or any medical area for that matter.

That awareness of those slight agitations (the noisy lights or the itchy sweater) that most are able to pull their attention away from and place it back to the more important and pressing matters of oh, working or learning, allows them to EMPATHIZE with the person who is on the spectrum because they are experiencing a small piece of the daily deluge of symptoms that impose themselves on an autistic individual daily. It allows them to see into my world a little bit. But by no means does it qualify them to be "a little autistic."

The trainer should tweak the presentation. Present an audience of autistic individuals their material first and ask for feedback. And listen. Explain that we can all experience things within our environment that make us uncomfortable and we can use those moments to remember that a person with autism is experiencing those things on exponential levels all of the moments that they are awake.

Research can only do so much when it is presented without the voice of those that it is representing. And, trainers need to focus on the point of what to do in response to the recognition of workplace or school environments that are not neurodiverse. What you do with the information after the fact is just as, if not more, important of the awareness.

On Moving

Alright. So, you know that feeling when you travel somewhere, perhaps to a different country, and it feels like you've been transplanted to another world? Nothing...NO-TH-ING makes sense. The words you are surrounded by and the customs of the people are completely foreign. Complex.

Maybe you bought a map and the travel guide for that particular place. You have done your research, found the best ways to interact with the townspeople, even marked the highest priorities on your sight seeing list.

Then, maybe your flight was delayed. And, when you arrived it was raining. But, you didn't pack an umbrella. You have no idea how to say 'umbrella' in the native tongue, so you keep walking around from store to store playing a game of charades with the clerks who look at you like you have five monkeys dancing on top of your head. They have absolutely no idea what you're asking for. You have no idea how to speak the words they might recognize. Defeated, you walk to your hotel in the downpour. You collapse in a heap on your bed, ready for tomorrow to bring a fresh start.

But, it does not. Your entire vacation continues on this trajectory for about three months. You awkwardly walk about stumbling through every day trying to communicate with the people around you with no avail. Everything. Every single moment is...hard. At every turn, you have to learn something that you knew on your own previous 'planet.'

This, my friends, has been my experience with moving every few years for a majority of my life. As a child and for the past eleven years as a military spouse. We have lived in five states, six homes, added a sweet son and said goodbye to our sweet fur-baby along the way. I have shared countless hours with nine primary care doctors, probably over thirty specialists, seven dentists. (Ahem: confession: I have had one too many bad experiences with new dentists that I'm over two years in our current location without having a dental exam. I'm taking the baby steps to get there though.)

Now, consider the places you go each and every week: church, the grocery store, school, restaurants, the dry cleaner. What happens if they've changed the layout of your favorite grocery store? You walk around lost for a few weeks, muttering to yourself as you hunt for your necessities. What about the local barista that knows your name and your favorite drink and has it ready for you when you get to the front of the line? Are you 'Norm' at the watering hole down the street...does everyone there know your name?

What happens when all of these things change all at once? Universes collide. Moving is one of the most stressful things that a person can endure in their life; if I recall correctly from my Intro to Psych classes it's in the Top Three. And, that's for the neurotypicals. What about for those on the spectrum who need their lives to be orderly and make sense just for the wheels to keep from falling off?

For me? It looks like regression: I struggle to not hermit myself inside the safety of home, clinging to the very things that I have moved into this foreign home. I walk around with earbuds in my ears at probably ten grocery stores until I find ONE that will work. Then, I have to deliberate between which one was the LEAST offending. And then, at what time to shop there. Then...it keeps on going. The process to choose a grocery store feels insurmountable. And just like that, I draw inward. I pull myself into a cozy little cocoon before I feel myself slip too far away.

Someone once told me that I chose this life. I chose to marry a man whose life included regular moving. Yes, I did choose to marry him- my best friend and the man that challenged me and encourages me to be a better Sara, each and every day. What I did not choose was to find out that my first giant move away from my hometown as an adult sucked the life out of me. Like sucker punched me right after getting married, buying a house and moving- I had the stress hat trick!

But here's the thing; I did not choose for my brain to be designed in such a way that would feel like the world around me was foreign and crumbling. For the longest time, I analyzed and prayed and attempted to "fix" myself from all of this.

This last move, two years ago, I felt the collision. But this time, with the increased knowledge I had gained with my diagnosis, I was able to know why this was happening. I wasn't able to stop it from down pouring for what felt like three months (this is figurative!) but I was better equipped to communicate what I was feeling, what I might need and what types of things I could do to keep myself from going full-on cocoon.

And yet, as I consider the very words I just wrote, I had the vision of a beautiful butterfly emerging from the chrysalis. Maybe this is what this very process of moving has been giving me. Because had I not had so many difficult times before, how would I know that I made progress on the most recent challenge?