Andrea Doten

@adoten2 | contributor
Passionate writer, neurodiversity ally, congenital heart disease survivor living life to the fullest.
Andrea Doten

Having a Scoliosis Diagnosis and Surgery as a Young Teenager

It all started when my mother took a piece of loose-leaf paper, held it against my back, and used a fluorescent yellow highlighter to trace my spine. “Your spine is literally curving,” she said to me. “No, it isn’t. That’s impossible. The doctor said it’s because my left lung doesn’t breathe well, so my right side is more developed. That’s why I have a shoulder hump,” I argued back. But the infamous thin, yellow line on the wide-ruled, lined paper proved me otherwise. When my cardiologist, of all people, first said the word “ scoliosis ,” I had never heard the term before. What did it even mean? Was it “bad?” What was “wrong” with me? What was going to happen to me? My cardiologist recommended I see my pediatrician for confirmation of the diagnosis, but he gave me a referral to an orthopedic surgeon at Johns Hopkins, where I already regularly received care for a congenital heart defect . I don’t remember much else about that day, but I do remember my cardiologist mentioning the possibility of surgery if my scoliosis progressed enough. “I’m sure the orthopedic surgeon won’t force you to go through surgery unless it’s necessary. You’ve already been through enough in 13 years,” my mother said on the drive home from the annual cardiology checkup. I don’t know if she truly believed that statement or if she was trying to comfort me. Either way, I believed her at the time. I was officially diagnosed with scoliosis in August, 2008, though I don’t think I doubted it at that point. I had already received confirmation from my cardiologist, my pediatrician, and my orthopedic surgeon. My X-rays showed I had a 30-degree curvature in my lower thoracic spine, which was considered moderate scoliosis . When I was informed of this fact, I figured the next step would be a back brace. I had prepared myself for that treatment protocol. I wasn’t prepared for what my surgeon actually said: “You’ll definitely need surgery.” I was both surprised and upset by his admission. “What about a back brace?” my mother asked, as she was probably thinking the same thing as me. “In my experience, back braces don’t really work, and they just postpone the inevitable,” he said. I was saddened by his lack of willingness to try a back brace to stabilize the curvature, but looking back on it now, I appreciate his candor about their supposed usefulness — or lack of usefulness — and that he didn’t force me to wear an uncomfortable, sweaty back brace for 20 hours a day during my adolescent years. Being the meticulous student I was, my first thoughts were both wondering when the surgery would be scheduled and hoping that I could wait until the following summer to undergo it, as I was starting my final year at my private, Catholic Pre-K-8 school. I was already facing a major procedure; surely I wouldn’t have to miss school on top of it. Due to the nature of my condition, I was self-conscious about my curved spine, resulting in a crooked posture during my early teen years. My so-called “friends” bullied me because of my spine, and I often came home crying about how much I hated school because I was being teased about something I couldn’t control. Since I would have to have the spinal fusion surgery before the school year was out, my mother decided to take matters into her own hands. It was seventh period on a Friday afternoon in January 2009. My seventh-period class was usually either art or religion class; but today, seventh period would be spent in neither art nor religion. Instead, seventh period would be spent in the school library — since it was one of the few rooms large enough to hold the entire eighth-grade class but was also small enough to allow us to have an intimate discussion. I didn’t want to face the rest of my classmates, but my mother insisted I be present for the moment when she told the class about my upcoming surgery, so I chose to sit in the far corner of the library near a dusty bookshelf that held various biographies. My mother explained everything about my scoliosis to the class: my diagnosis, the fact that I would miss a significant amount of school time for surgery, and how much aid I would need once I returned to classes. The recovery would be quite restrictive in regards to normal functioning in a school environment — or any environment for that matter: I wouldn’t be allowed to lift anything over three to five pounds even though my orange-and-white flower-printed backpack often weighed over 10 pounds. I also wouldn’t be allowed to participate in gym classes or field day — not being allowed to participate in my final field day at my school bothered me more than not being allowed to participate in gym. Overall, I would need a lot of time to physically recover from this surgery. I tried to live as normal of a life as possible before my surgery. I attended classes and dances and rehearsals for the annual musical in between pre-op appointments, X-ray procedures, and pre-surgery blood draws. The cast party for the end of the spring musical, “ Godspell ,” was the Friday before my surgery. The party didn’t feel like much of a celebration, and I had such an insignificant part in the play that I could have dropped out and nobody would have noticed my absence. Lots of cast members, mostly my fellow eighth-graders, were crying — and by crying, I mean sobbing — over the end of their final performance of middle school. I felt disconnected for most of the party as I had the cast and crew sign my program and wished my classmates and teachers farewell for the time being. I had bigger worries on my mind than the end of a grade school musical. The big day finally arrived: March 30, 2009. I woke up early to be at Johns Hopkins Hospital on time, which was 6:00 a.m. I didn’t need any reminders — the date and time had been inked on the kitchen calendar since it had been scheduled back in December. After I had showered, grabbed my belongings, and kissed my dog goodbye, my parents and I left for Hopkins. As we drove to the hospital, my level of nerves began to increase drastically, but I ignored them for the time being. I still didn’t want to believe what would be happening in about an hour-and-a-half. The ride to the hospital was easily one of the longest car rides of my life, even though we live only 22 minutes from Johns Hopkins. We arrived at the hospital and walked down the long corridors where we were directed to pre-op. I secretly wished we could have gone through the domed Billings Administration Building where a marble statue of Jesus Christ, or “The Divine Healer,” stands so I could rub His foot before my surgery. Alas, the Children’s Center was nowhere near the Billings Administration Building. After I arrived at the pediatric pre-op area, I did all of the things the staff asked me to do:  I changed into a hospital gown, I had various lab tests taken, and I discussed the anesthesia procedure and the operation itself with my surgical team. Members of the team told me what to expect when I woke up, and then one member said he would be back in a few minutes. At this point, I knew the inevitable was approaching, but I still didn’t want to believe I needed to have surgery. Maybe my orthopedic surgeon would come back to the pre-op room and tell me I didn’t need the surgery done after all. Despite these thoughts, though, I knew I was just kidding myself. Mom put on the sterile clothes she was required to wear: a gown, a hair net, surgical slippers, and a surgical mask. I only needed the hair net and surgical slippers. When one of the team members arrived and said it was time to go in, I kissed Dad, Grandma, and Pop Pop goodbye and left the pre-op area with Mom. It was time for the moment I had been dreading since December. It was “go time.” As Mom, the member of my surgical team, and I walked to the operating room, I began to get really nervous. I don’t really know why I walked into the operating room and wasn’t wheeled in on a stretcher, but so be it. I swear my heart rate went up with each step and each passing moment. The journey seemed endless as we wandered through the maze of hallways, and just when I believed we had reached our destination, we turned another corner to prove me wrong. Finally, we reached the operating room where my surgery would take place. As I walked into the operating room, I saw my surgeon reviewing my X-rays. I hopped up onto the surgery table, hoping not to get a glimpse of the sharp scalpels and saws. As the operating team hooked me up to various monitors and machines, I held my mom’s hand tightly and began to cry. That moment was when it finally hit me: I was having surgery, and there was nothing I could do to stop it from happening. All I could do at that moment was pray and cry. Once the anesthesiologist put the anesthesia mask on me, I started to inhale my vanilla-scented, anesthesia air, thanks to some Lip Smacker Chapstick smeared on the inside of the mask. I began to worry that I was not falling asleep. Mom told me to relax and not to worry. Those few minutes are all I remember about the operating room. When I woke up in the ICU, I felt a sharp, painful, soreness wash over my body like a massive tidal wave. Though I was still groggy from the anesthesia, I immediately wanted to know where my family was. My parents came in to see me, but they could not stay long because they needed to get home to care for our dog, so my grandparents spent most of that initial day with me. I don’t remember the rest of the surgery day because I was sleeping on-and-off through it. The next day, I was moved into a regular hospital room. This room was where most of my visitors came and where much of my early recovery took place. When I was transferred from the ICU to my hospital room, all I remember was a groggy, heavily medicated ride down long hallways from one room to another. When I started my physical therapy the following day and sat up for the first time, I felt dizzy and nauseous, and I was in a tremendous amount of pain. My first task was to slowly walk over to the chair in my room so I could sit up for a few hours. One minute seemed like one hour or even one whole day. Every day afterward, the physical therapist would work with me so I could relearn how to walk and climb stairs. These tasks, which were once so natural to me, were suddenly far more difficult. It took all of my energy to simply get up and go to the bathroom, sit up in a chair, or climb stairs. My recovery was not a pleasant experience, and I learned to never take my mobility or flexibility for granted. After six long days in the hospital, I finally got to go home on April 4, 2009. The bumpy car ride out of Baltimore was very painful on my back, mostly because I was stubborn and did not take my pain medication like I was instructed to do prior to being released from the hospital. I arrived at my house, where I continued to recover and improve. My recovery was a long, slow process, and I felt like it would never end. Now almost 13 years later, this memory sticks with me because I overcame a great fear — something I did not want to happen. I learned not to take simple things for granted because of my scoliosis surgery. After facing and recovering from this surgery, I realized I can do anything and to never give up hope no matter how difficult things seem to be.

Andrea Doten

The Lessons I've Learned as a Young Stroke Survivor

I woke up in August and thought it was February. When I tried to eat Cheerios or my grandma’s chicken noodle soup, I was unable to bring my right hand to my mouth. I had to let my parents feed me as if I was an infant again. How was it Sunday when my open heart surgery was Thursday? I couldn’t figure out what was happening to me, what happened to four days of my life, or why I couldn’t do simple things I once took for granted, like feeding myself or having the ability to easily recall the day of the week and month of the year. I remember asking, “Mom, what happened?” I can’t recall if any other family members were in the Pediatric Intensive Care Unit of Johns Hopkins Hospital with me, but they already knew what my mom was about to tell me, “Andrea, there were complications during the operation. Your heart was fused to your sternum, and the heart was cut with the bone saw. The doctors believe air bubbles got into your bloodstream and reached your brain. You had a stroke.” I didn’t fully comprehend what this meant for me at the time, but I was confused as to how I had a stroke, since I thought strokes were something that happened to older people, not 16-year-old rising high school juniors. I quickly discovered how tasks that I had once taken for granted were going to become difficult. In the hospital, when I tried to eat my grandma’s chicken noodle soup — my first food that wasn’t ice chips — my right hand shook, and I had no control over it. I kept trying out of sheer stubbornness, but eventually, I recognized the fact that I would have to be fed. It was the first time the magnitude of what happened hit me. Over the course of my hospital stay, and with the help of a physical therapist, I gained back the ability to eat without being spoon-fed by someone, to walk without getting disoriented, and to climb stairs without having to lean on someone else. Since I was easily able to gain those basic skills back quickly, I thought recovery was going to be fairly easy because I was young. A week into the school year, the school’s president — who also happened to be my Honors English teacher — passed out a blank schedule and instructed us to write down our Monday schedule for use at Parent-Teacher night. While it had been difficult for me to master the school’s rotating schedule my freshmen year, I was confident that I could write down my Monday schedule: blocks A through H in alphabetical order. I took my pen and only then did I think: what is my A Block class and what room is it in? I glanced around the room, and most of my classmates had written down their schedules in less than a minute. I pulled my schedule out of my bookbag and went to copy it onto the yellow piece of paper. My hand shook, my pen slid all over the place, and it took me several moments to copy my schedule correctly. When I was done, it was barely legible. It was at that moment I realized my stroke had caused more issues for me than I had thought. It was at that moment I thought I wouldn’t make it through junior year. It was at that moment I thought my life was over as I knew it. It didn’t help that my teacher was hovering over me since I was taking so long and I couldn’t deduce what she was thinking. I came home that night crying, and I showed my mom the poorly written schedule. I lamented about how it seemed like none of my classmates or teachers knew that I was struggling since I didn’t have any physical signs of an injury. It had taken my English teacher watching me struggle to write a simple class schedule to realize I needed to lighten my class schedule for the year. I believed I wouldn’t be able to handle the challenging coursework for the year. I believed I wouldn’t pass my classes. I believed I would never be the same again. I hated how I couldn’t remember things as easily as I once could, like my class schedule or my homework assignments. I thought my stellar academic life was over. I asked Mom, “Why did this happen to me?” It’s pretty much the universal question anyone asks when they’re in a less than ideal situation, but my mother had the perfect response, “Because God knows that you can overcome challenging situations. Look at how far you’ve come since your back surgery a few years ago.” I pondered what Mom had just said, and that was when I realized my post-stroke life would be what I made of it, no matter how cliché it sounded. My life wasn’t over because I had a stroke. Certain aspects of my life and my intellect were affected: my short-term memory was impaired, my math skills were compromised, though honestly, they were never great before the stroke, and my handwriting still rivals a doctor’s in terms of readability, but my stubborn, can-do personality had not changed. I was still me. As the year progressed, I told myself that I would make the honor roll, that I would pass the AP United States History test, that I would maintain exceptional grades, and I would make it through the struggles. And I did all of that and more. It took hard work and determination. I did have to lighten my course load by dropping trigonometry for the year. I put in hours of time to complete projects for my classes. I also had to handwrite notes for my classes, forcing me to improve my handwriting. It was the hardest I had worked in my academic career, but it paid off in the end. I graduated third in the class, I’ve completed an undergraduate degree, and I am working toward a master’s degree. If having a stroke has taught me anything, it’s resilience. I’ve gained more courage than I ever knew I had. If I thought my recovery from spinal fusion surgery was difficult, my stroke was even more so. But in both cases, I persevered and never gave up, even when things were difficult. It taught me to believe in myself, because I can achieve anything. A once dark time in my life has actually become one of my greatest blessings. Of course, if I could choose whether or not to have a stroke, I would choose not to have one. But if it had to happen, I’m glad I had a unique opportunity to learn about the power of resilience.

Community Voices

Why I Choose to #GoRedInstead for Autism Acceptance

April is Autism Acceptance Month, a month to celebrate the achievements while also acknowledging the struggles of the Autistic community. If you’ve never heard of Autism Acceptance Month, then you’ve probably heard its counterpart, Autism Awareness Month. Today, I’m giving some reasons why I choose to celebrate the former and not the latter.

Autism Awareness Month is associated with the #LightItUpBlue campaign. This campaign was started by Autism Speaks, the most well-known Autism “charity” organization that many Autistic people view as a hate group (they often write Autism $peaks).

Only a autisticadvocacy.org/wp-content/uploads/2018/03/AutismSpeaks... of Autism Speaks’ budget goes to Actually Autistic individuals and their families, and they only have only one Autistic member on their board. They generally do not respect the wishes of Autistic people. An example of this disrespect is using person-first language (person with autism) when the overwhelming preference among Autistic people is Why Many Autistic People Prefer Identity-First Language (Autistic person).

In the past, Autism Speaks has supported the shotofprevention.com/2015/02/21/autism-speaks-too-late-on-vaccines that the MMR vaccine causes autism. They have encouraged parents of Autistic children to “grieve” their child in the same manner as if the child died and to autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-aut... for the family’s problems. They have advocated for a “cure” for #Autism throughout their history. Autistic people do not need to be cured!

They have a history of advocating for www.autismspeaks.org/applied-behavior-analysis-aba-autism-treatment (ABA), a “therapy” that discourages what they call “autism symptoms,” such as stimming and not making eye contact. For many in the Autistic community, ABA is similar to what conversion therapy is to the LGBTQ+ community.

Autism Speaks and other “awareness”-oriented organizations use the puzzle piece symbol, which is considered offensive to many Autistic people because it The Problem With the Autism Puzzle Piece.

This month, instead of being “aware” of Autism (Autism Awareness), celebrate the Autistic community (Autism Acceptance). Instead of the puzzle piece, use the rainbow or gold infinity symbols. Instead of #LightItUpBlue, #GoRedInstead for Autism Acceptance.

10. Most importantly, LISTEN TO ACTUALLY AUTISTIC PEOPLE. Listen to their stories and experiences. Follow them on social media. Support organizations that have Actually Autistic people on their boards. Celebrate neurodiversity.

Happy Autism Acceptance Month, everyone.

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Andrea Doten

How TV Shows Are Changing Perceptions of Autism

For many years, autistic people were usually depicted in mainstream media as individuals who are nonverbal, unable to feel emotion, or non-functional in life. Recently, there have been more television shows for all age levels showcasing autistic characters in a way that parallels the movements to include more people of color and LGBTQ+ representation onscreen. There are both positive and negative benefits to portraying autistic characters on television, and reactions from the autism community have yielded mixed results. These pressures to portray autism accurately have sometimes caused series creators to not officially diagnose a character with ASD. While autistic representation on television is important, there are pros and cons in regards to showcasing autistic characters, particularly at different stages of life. The popular children’s television program, “Sesame Street,” introduced Julia, a Muppet on the autism spectrum in April 2017 as a part of Autism Awareness Month. It was groundbreaking to have a TV show geared towards preschool-aged children introduce an autistic Muppet. Sesame Workshop had already introduced several initiatives over the years to expose children to various differences and build inclusive communities. Some of the programs found on the Sesame Workshop website include resources for military families, children coping with traumatic experiences (poverty, homelessness, divorced parents, an incarcerated parent etc.), and health and hygiene. According to the Centers for Disease Control, approximately 1 in 59 children are diagnosed with an autism spectrum disorder. Since the number of autistic children has been increasing over the years thanks to better screening and testing, Sesame Workshop began an autism initiative on their website in 2016 for both families of children with autism as well as to aid neurotypical children in understanding the autism spectrum. While there has been controversy regarding Sesame Workshop’s choice to pair with Autism Speaks, the introduction of Julia on both Sesame Workshop’s social impact initiatives as well as a character on the television series has been a great stride in teaching preschool-aged children about autism and how the differences in their behavior are OK. In addition to “Sesame Street,” another long-running children’s television program features a character with Asperger’s syndrome. The PBS Kids series, “Arthur,” also features an autistic character. Carl Gould, a character who befriends George Lundgren, has Asperger’s syndrome. At first, George did not know how to treat Carl; Carl has obsessions with puzzles and trains, he only drinks apple juice from a box (not a bottle), and was afraid of George’s dummy, Wally, causing Carl to rock back and forth in the corner (a form of stimming, which is a behavior consisting of repetitive actions or motions). When George asks his friend, Alan “the Brain” Powers, to help him understand Carl, the Brain uses the description his uncle told him about what it is like to have Asperger’s syndrome in an attempt to help George understand Carl’s behaviors and experiences better. Since Arthur has introduced children to many different topics throughout its 22-year history, incorporating an autistic character has taught elementary school-aged children about how to understand children on the autism spectrum. While children’s programming has begun to include autistic characters over the past several years, adult-oriented/family-oriented programming has been introducing autism storylines as well. One prominent show that had an autistic character was NBC’s family dramedy, “Parenthood.” During the pilot episode of the series, 8-year-old Max Braverman was diagnosed with Asperger’s syndrome. Throughout the series, Max faced many unique challenges, including social connections. The earlier seasons of the series portrayed Max’s parents, Adam and Kristina Braverman, and sister, Haddie, as well as his extended family adjusting to his diagnosis, detailing not only how autism affects the individual person, but also their family. As the show progressed and developed Max’s character, the audience witnessed his struggles to connect socially with his classmates. One of the most poignant episodes of “Parenthood” involved Max excitedly going on a camping trip with his classmates. While he was on the camping trip, his fellow classmates bullied him, and even went so far as to urinate in his canteen. While Max did not fully understand why his classmates were bullying him, he eventually came to the conclusion it was because he’s “weird” and broke down in tears. Not only did this scene help the viewers empathize with Max, but it also showed a very important misconception about how autistic people do not have the capability to feel or show emotion. “Parenthood” has helped to take away the stigma surrounding autism and autistic people. While the producer’s son has Asperger’s syndrome, Jason Katims has admitted he was initially hesitant to include the storyline in the show. Though Katims did not know whether or not including Max’s storyline would do autism justice, he ultimately showcased autism in a way that showed both the hardships and the unexpected beauty of being on the spectrum. By creating an empathetic character, ABC’s “The Good Doctor” has encouraged viewers to learn more about autism in the manner “Parenthood” did. Based on a South Korean medical drama of the same name, “The Good Doctor” showcases the life of Dr. Shaun Murphy, a surgeon with autism and savant syndrome, including both the triumphs and the struggles that come with being on the autism spectrum. Throughout the past two seasons, Shaun has faced communication difficulties, prejudice, discrimination and struggles with forming both platonic and romantic relationships. Though Shaun has his struggles due to being autistic, his savant syndrome aids him in saving many of the patients since he comes up with solutions the neurotypical surgeons do not view as a viable option. Through their characterization strategies, the writers of “The Good Doctor” have made autism a part of Shaun, not all of him. The show has portrayed him as a person the audience can sympathize with during his struggles and celebrate with during his triumphs. He has successful surgeries, develops friendships and has grown in character development over the first two seasons. Because Shaun has been developing into such a well-rounded character, the show and Freddie Highmore’s portrayal of Shaun have even caused individuals to want to learn more about autism. A study conducted by Stern and Barnes concluded that participants who watched the first 28 minutes of the pilot of “The Good Doctor” were both more interested in learning more about ASD and had more positive views of individuals with ASD than participants who watched a lecture about ASD. By creating empathetic characters, both “Parenthood” and “The Good Doctor” have contributed towards ending the stigma surrounding autism and have increased understanding about individuals on the spectrum. While television shows have helped TV viewers understand autism better, including autistic characters has also garnered criticism from both critics and the autistic community. Often on television programs, autistic individuals are portrayed as geniuses with savant-like abilities, holding down successful jobs, and maintaining both romantic and platonic relationships for the sake of creating a “Hollywood Happy Ending.” Not every autistic person fits Hollywood’s depiction. On “The Good Doctor,” Shaun has savant-like abilities, a trait only 10 percent of autistic people possess. Not only does the majority of the autistic community not possess genius abilities, but many are also faced with other challenges not often showcased on television. There are people on the autism spectrum who are nonverbal, who have other intellectual disabilities, or might not have high emotional regulation or knowledge of subjects outside of their obsession or specialty. While including autistic characters on TV has increased awareness and acceptance of autism, it has also been a disservice to a portion of the autistic community since autistic television characters have fewer struggles and hold successful jobs and relationships with seemingly little help and therapy compared to some real-life autistic individuals. Due to the pressures of portraying autism accurately, some TV programs chose not to officially diagnose their characters that showed classic symptoms of ASD. Dr. Sheldon Cooper from “The Big Bang Theory” and Dr. Temperance “Bones” Brennan from “Bones” are two characters who demonstrated classic symptoms of Asperger’s syndrome, though they were never stated to be autistic (Sepinwall). Both characters often displayed behaviors typical of those individuals with ASD (Sheldon had a particular spot in which he had to sit, neither Sheldon nor Brennan understood pop culture references or sarcasm, and both were extremely knowledgeable in their chosen fields of physics and forensic anthropology). Though autistic characters have been introduced into more television shows, some showrunners have admitted that they chose not to officially diagnose a character due to the fact that there would be more pressure to portray autism accurately; this was one of the main reasons “The Big Bang Theory” producer Chuck Lorre never officially confirmed Sheldon as having Asperger’s syndrome. “Bones” creator Hart Hanson also admitted he decided not to confirm Brennan as having Asperger’s syndrome due to having been on a major network (Fox) compared to a cable channel, though he did confess that Brennan was based on someone he knew who had Asperger’s. Though these two characters and many other television characters have articles speculating on whether or not they do indeed have ASD, having characters where audiences are not 100 percent certain about the nature of their conditions has reflected reality in the fact that autism can be difficult to officially diagnose, particularly in adulthood. The movement to include characters with autism spectrum disorder and other disabilities has been similar to the movements to include more people of color and LGBTQ+ people on television, but there will always be challenges. Since autism is a spectrum, not every character has represented every single autistic individual, especially autistic people who are nonverbal or do not have savant-like skills. But just like representation for POC and LGBTQ people, increasing the number of autistic characters has helped bring more awareness and acceptance of the autistic community over the past several years. Though autistic people all experience the condition differently, increasing neurodiversity on television is important to aid in both representation and the autism acceptance movement. Now the question becomes how much of an impact the autism acceptance movement will make in the future.