Wearing My 'Brave' Cape to the Doctor's office: Musings of an Autistic Woman

"Hi. I am Candice, and I am autistic." Kind of sounds like I am introducing myself to some anonymous group for autistic folks. But in reality, nowadays, this is how I introduce myself when I feel safe to share about myself, or when I write, blog, present or train other professionals about neurodiversity. I do this because it feels freeing. I masked my whole life until, when I was 44 years old, I was finally accurately diagnosed by an astute therapist who asked the right questions without assuming I "looked" anxious, depressed, borderline, traumatized or any other way that fit with their view of the perfect diagnosis for me. By the way, I chose this close-up picture of me primarily because it was the only picture that had the right pixels to upload onto Linkedin. However, I am glad that you can see my eyes close up in this picture because it was taken before I tore my left retina. That was an interesting day that required me to get out my red brave cape from my closet. I was going to need all the bravery I could get my hands on to deal with this ordeal.

I tore my retina on New Years Day- January 1st, 2022. Having to go to multiple eye doctors reminded me of just how unseen I have felt all these years by medical professionals because I look a certain way-or rather, because to so many, I don't "look" autistic... or I don't look autistic enough, perhaps, to be sensitive to my specific needs. Hence why my brave cape is red. People see that color.

Let me say first that I know a lot of doctors mean well and likely go into the medical profession to help people heal, and to alleviate others' suffering. I also realize that we are in a strange time in the world where the pressures being put on doctors since COVID have been massive. So I have a lot of compassion towards first responders, therapists, and other medical/helping professionals on the front lines. I get it- I am a neurodiverse therapist.

With that said, my recent experience at the doctors office is another reminder that we can do better in the medical profession in the United States to be more sensitive to neurodiverse people. When I tore my retina a little over a week ago, the process to identify the issue was uncomfortable and at times physically painful. But what was even worse?

How the nurses and the eye surgeon treated me.

When I first arrived, I felt incredibly anxious at all the change happening. I was on the verge of having a melt down and using my breathing tools and my husband Chris's gentle guidance to get emotionally regulated. The fluorescent lights in all the offices, especially after having my eyes dilated were too much to handle. So I was honest with the nurse, who asked how I was doing. I held onto my brave cape as I told her, "I am autistic and the flourescent lights are putting me into sensory overload." She said, "Do you want me to dim them?" My quiet response (although I was screaming it at the top of my lungs inside) was, "Yes."

Next, came the surgeon. No bedside manner or listening skills. He asked how I was doing and when I told him, "I am not doing well" he said, "Good" in an eager tone and moved on. He didn't explain the procedure I was going to have or give us any aftercare instructions even when we asked. His response was, "I will tell you after I am done writing this." Then didn't.

I felt defeated and anxious the following week as my eye didn't seem to be improving- I compared what I could see to looking out of a dirty windshield-foggy, blurry, with a lot of black floaters. You know it is bad when you are able to count your eye floaters in the dozens when you are bored. On the day before my follow up appointment I started seeing flashes of white light. The surgeon said to contact him immediately if this was the case so I put on my red brave cape and called the emergency doctor on call. His response, "Nah. That's normal. Tomorrow he will just zap your eye again with some more laser if it needs it", like he was talking about giving me a squirt of mouth spray for bad breath. He then ended the call. I burst out crying. "I can't do this again" I sobbed. I went back to bed and laid under my covers. All of the unknowns of this situation for my neurodiverse brain felt completely overwhelming. For example, after the first procedure, I was completely out of commission. I couldn't drive and hardly could see out of my left eye. I went home and slept for several hours. I panicked at the thought of another procedure and the unknowns of another day.

The next morning, I searched for my red brave cape which was torn and tattered after this experience. I fixed it as best as I could and put it back on apprehensively, unsure if it would get me anywhere with the surgeon and his not-so-nice nurses. I found myself being short with the first nurse and after she left, Chris gently signaled to me our secret code for "reel it in little" that we created since I can be unintentionally sharp with others at times. I did some 3-2-3 breathing which helped. Luckily I had my mask on so the surgeon couldn't see my resting B*&% face underneath. As I gripped my brave cape, I gave him feedback about my experience with him and his staff as a neurodiverse person going through an incredibly scary experience.

At first he was defensive and touted that he is the surgeon and knows best. I listened to him then sat up in my chair, straightened my brave cape, and leaned in for one more attempt to get him to SEE and HEAR ME. I told him calmly (ok as calm as I could be) that I am not a surgeon and therefore was reliant on him to provide me with as much information about this serious procedure including the aftercare instructions so that I didn't have to go to the internet for my answers. He finally apologized and admitted, "You are right. We can do better next time." I thanked him for listening to my concerns and for committing to communicate more clearly and effectively with me at our next appointment.

I let my red brave cape soar as we left the hospital. I felt a little more at ease hoping that my courageous feedback would help him and his team be more aware that each patient is a human being, an individual person with individual needs. I was hopeful that he could see the importance of not making assumptions, of taking time to be kind, to really listen when a patient says they are not ok, and to take an extra 1-2 minutes to show compassion and to give reassurance when a patient is afraid-especially a patient who has specific needs. I was hopeful that he and his team would dim the lights before having to be asked to do so, and to take an extra 5 minutes to explain in concrete details medical terminology, procedures, and after care instructions instead of acting as though we are all doctors in the room. Lastly, I was hopeful that he and his team would take time with the next patient to really SEE and HEAR who is in front of them no matter what kind of a brain or presentation we bring with us. #neurodiversity #autism #acceptautism #doctors #sensitivity #bedsidemanner

Here is to being brave and neurodiverse!

Candice