On Remembering 9/11

On this day, 17 years ago...

I was driving to class as a sophomore at UCONN's Avery Point commuter campus. I was listening to Howard Stern, as some 19 year olds did, I suppose. I had just four days prior witnessed the miracle of birth of my sweet niece, Toni, and was excited for a brand new day of learning. (Really. I was THAT college student.)

Howard and Robin were talking about something absolutely ridiculous, as always. And I was chuckling at the idiocy of it all. Just as I pulled onto campus, I heard them gasp and question what had just happened as one of the airplanes flew into the tower.

Confusion and utter heartbreak overtook me as I realized that there were people and families whose lives would forever be changed. At the time, I had no idea the implications of this first act.

I went into class with a heavy heart, thinking of all the firefighters that were rushing to the scene. Then, my mind flashed to my own firefighter boyfriend and all of our mutual friends who would rush into any burning building to preserve any life.

At the end of my first class, I learned that there was a second plane. The word "terrorism" was beginning to spread. All I knew was that I felt vulnerable and unsure of everything in my world. And that I wanted to be with my sister and that sweet, innocent baby that undoubtedly would give us all the smiles and hope that we needed to face the unthinkable that day.

Classes were cancelled and everyone dispersed from campus. I drove directly to Steph's, having attempted to call but all cell lines were jammed. Less than a two hour drive from where I was in that very moment, people were dying and facing tragedy that none of us had ever fathomed.

As my family gathered at my sister's house that day, huddled into the living room, watching the news as it all continued to unravel, we took turns snuggling and breathing in the fresh scent of the newborn baby among us. Such innocence and hope were needed in those moments.

As we have every 9/11 since Jackson was born, we will bring treats to our local firefighters. We will thank them and show them that they are in our thoughts and prayers today as everyday, they place their lives on the line to preserve the life and property of complete strangers.

I will never forget where I was when the world changed on that fateful day in 2011.

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.