28/12/2023
As this year is finishing up, I can’t help but reflect back on the last 12 months. I have had a lot happen in my 36 years, but I’m not sure I have ever lived such a transformational year. There have been many times in posts that I say I want to expand on things that happened, but I never revisit because I am moving on to the next thing that requires all of my attention.
This year I have rediscovered my love of writing. I remember being a third grader and getting lost in writing stories and poems. I loved sharing my stories with those I loved. My grandma would always listen to my silly 3rd grade stories that usually mirrored whatever book I was reading at the time. I had a teacher who encouraged me to write. I wanted to be an author.
Unfortunately life events at this point, shifted my focus. School became a place that robbed me of my love of writing. It told me that I was doing it wrong. I had to follow their steps. I had to follow their rules. I didn’t write the way they told me to. I couldn’t plan. I couldn’t make an outline. My neurodivergent brain needed to write everything at one time. My planning was happening in my head. I manipulated the language in my head. I planned my organization in my head. By the time I was putting words onto paper, I was ready to write my first draft. So when school forced me to make plans and follow the rules for “good” writing, I began to think I was bad at writing. I hated it. A time that was so special to me became one that I detested and filled me with anxiety.
I can not tell you how many times in the last ten years I said that I hated writing and that I wasn’t good at it. I’m so grateful to have learned that that is all a lie.
As I am reflecting on all the events of this last year, I find myself longing to share my stories. Share the moments of deep hardness that I wasn’t sure I was going to get through. Share the moments of unbelievable love and happiness. Share the tears of pain, joy, fear, love, shame, hope.
There is part of me that fears that people will be annoyed with me. That I’m being too much. That I need to just be quiet. Thankfully, that part is learning that it’s okay if people think those things. They are welcome to their opinion about me, and that opinion probably says more about them than it does about me. They are welcome to hit unfriend or unfollow and I’m not even bothered.
My authentic self is able to reassure that part that it’s okay for us to take up space. It’s okay for us to share stories. I love stories. I love memoirs. I love getting to see what makes a person tick. I have no doubt that my stories are interesting. I’m living them after all and my stories are far from normal. I also know that they are the same stories that so many are living. My stories can make people feel seen. My stories can give encouragement to those in the midst of turmoil. My stories can make people laugh in the midst of pain.
How do I know this? It’s not that I’m conceited, full of myself. I know this because others’ stories have provided me with this my entire life. I have been told many times that I should write a book. I’m not sure that I will ever do that, but the idea does give me an excitement I haven’t felt since the third grade. I’m not sure what the future holds in that regard, but I would love to share some of the most important moments of the last year with those who care to read.
I think the most fitting place to begin is right at the beginning of the year.
January 19th
This was the intake for my professional evaluation to get a formal ADHD diagnosis. In February of 2022, I had scheduled this evaluation to appease the psychiatrist I was seeing. He didn’t want to prescribe me medication for ADHD without a full evaluation. As I called around, I realized that this was going to be impossible to do quickly. The waiting list was ten months out. He was satisfied that I had at least scheduled the appointment and felt that my symptoms were so closely tied to ADHD that he started me on a stimulant. Starting that medication was life-changing and so validating. I had been doubting that I had ADHD. I got a master’s degree after all.
On the medicine, I could think clearly for the first time in my life.
The psychiatrist told me I should still keep the evaluation appointment because it would give me valuable information about myself. I said okay then promptly forgot about it as someone who has ADHD tends to do.
I began reading voraciously about neurodivergence and ADHD in adult women. It has been missed by so many people. I learned that professionals were woefully behind in this area and women were drowning while being diagnosed depressed and anxious and being given pills that didn’t work for them. Like me, they felt crazy and hated themselves.
I read a book called Divergent Mind by Jenara Nerenberg. This book covers many different types of neurodivergence in women. I felt seen while reading the ADHD section. Once again validated that it has not been something inherently wrong with me, but instead, my brain just worked differently. It was during the autism section that I found myself sobbing. I saw myself in this section. I cried tears of relief to know that this lived experience wasn’t just me. I wasn’t alone. I also cried tears of fear. This was going to change everything I knew. I knew the struggle I was going to come across to once again have my experiences seen by those around me.
I then cried my way through Unmasking Autism by Devon Price.
When my phone rang in December from a local number, I was tempted to not answer the phone, but knew that local numbers were usually important. It was the center reminding me of my evaluation. I thanked them for the reminder, and told them that I wanted to add autism to the evaluation. Immediately I felt stupid for even asking. I knew the battle that other women had encountered when seeking a diagnosis and I knew that I may have to go through the same thing. I also knew that my lived experiences were aligning with other women who were receiving late in life diagnoses, and nothing else had made this much sense.
There were still a few weeks till the appointment. I began to mention to those closest to me that I was going to be having this evaluation and that autism was something being assessed. The response was usually the same.
“Really?! Hmmm. I don’t see that in you.”
This, of course, was the same response I had gotten for ADHD. Those responses repeatedly began to take its toll. Maybe I was making this all up? Maybe I knew so much about autism that I could “fake” the symptoms I was seeing. I’m thankful I kept up my constant pursuit of knowledge and followed accounts of neurodivergent adults, specifically women. Their experiences were the same. Their content would reassure me and realign me on my path of self discovery.
I had been in the process of unmasking, which means in simple terms becoming my authentic self. Accommodating my sensory experiences, allowing myself to stim, advocating for myself in environments that were not welcoming and accessible were all parts of this unmasking. Responses varied. Some were annoyed at me constantly talking about ADHD and my brain. Some were uncomfortable because they saw themselves in me and they didn’t know what to do with that. Some were empowered and relieved because they saw themselves in me and they finally had answers. Some were angry that I was constantly pushing back on expectations that were restricting and quite frankly, useless.
Then came my appointment. My stomach was in knots on my way to my appointment. I knew autism was the answer to a lifelong question. Knowing I was autistic was freeing. It meant I didn’t have to hate myself anymore. I loved so many autistic people and I knew there was nothing wrong with them, so being autistic meant I could love myself. So if this doctor decided I wasn’t autistic, I was terrified of what that meant for me. I would have the answer that allowed me to feel so seen and validated ripped from me. Would I have to go back to hating myself?
I don’t remember much of that initial appointment. I remember walking into the doctor’s office and immediately seeing the fidget basket, and making my way to it. The doctor started with the small talk pleasantries then explained this was just the interview portion. I don’t remember exactly what I said after she gave me the introduction, but I remember it was along these lines.
“I am going to try to do this interview unmasked and I want you to know that terrifies me. It makes me think that you will think I’m faking. It makes me afraid of what you will think of me. Usually, I want to impress professionals and be as articulate as possible, along with my body language being appropriate. So I’m afraid if I do that you will think I’m not intelligent. But I’m more afraid that if I stay masked, you will tell me that I’m not autistic and I won’t have any answers and I leave hating myself.”
I don’t remember her exact words either but I know they were along these lines.
“Thank you for being so open and vulnerable. I know that is not easy and I truly appreciate it. I understand that unmasking is difficult especially when it has helped you your whole life. I want you to be as comfortable and honest with me, so we can get the most accurate information. I can’t promise you your diagnosis will be autism, but I hope after the evaluation is complete you will have answers and next steps.”
I’m not sure what it was in her language but it was clear to me that she had some up to date knowledge on neurodivergence in women, and I felt safe and reassured.
So I talked about my life experiences and answered her questions to the best of my knowledge. Looking back on it now, I still lacked so much understanding of myself and my brain, but I showed up as authentically as I could at that time, and when I read my evaluation report, I think it reflects an accurate portrayal of me.
I walked out of her office, got in my car, and promptly began crying. Reflecting on this moment, I’m not sure there was a single reason I could say the tears were for. I was crying because the pressure of that interview had been so much. I was crying because, at that time, it was so much work to be authentically myself. I was crying because I couldn’t take back that appointment. I had asked to be evaluated and now the ball was rolling. I was crying because I was afraid that the report would come back and tell me that I was wrong, and the answers I had been searching for my whole life were still out of my reach. I was crying because I was afraid that the report would confirm my suspicions, and I didn’t know what that would mean, but things would inevitably change.
Then I dried my tears and drove to work.
Evaluation Day.
I don’t remember much from this day. As a special education teacher, I knew what this process looked like on the evaluator’s side, and I suspected I knew what it was like to be evaluated.
My whole life I was told I was intelligent, and I believed this for the most part, but I had never challenged myself when growing up. I purposely took easy classes in high school because I couldn’t risk “failing” by getting a B. My underlying belief as a child was that intelligent people did not “fail” and this meant they always got As.
I knew that these assessments were going to measure my intelligence. I tried to reassure myself by telling myself what I told my students for the last 10 years. This test does not determine my worth. It doesn’t look at all the strengths I do have. This test just gives information. That reassurance fell short once the assessment began. I could tell the evaluator wanted me to just answer questions. She could tell that I was overthinking and if I just released the anxiety and answered I would get it right. She would remind me if I didn’t answer in time, even if I got it right, she couldn’t count it correct. I could feel her exasperation as I kept overthinking. She was professional, but she knew I could do better than I was showing. Story of my life.
At the end of 6 hours of testing, I was exhausted.
Then the waiting began. It would be a few weeks before the evaluation report was complete. While waiting, I began to let people know my suspicions by dropping little hints here and there. I also began talking about unmasking and what that meant. I knew that unmasking was going to be a daunting process and would take a lot of energy and willpower. The first people I shared my suspicions with were my students. I had been very open all year about having ADHD. It was incredible how being vulnerable with these small humans allowed them to be more gentle with themselves and more understanding with each other. I could reframe things I did that they saw in themselves, and because they loved me, that must mean they weren’t all bad either.
I maintain that my students over my 10 year career of teaching were the first humans who saw me as unmasked as I could be as my adult self. I felt safe to make mistakes in front of them because I knew I could use it as a learning experience. I felt safe to be silly because I knew no one would judge me for it but it would allow me to connect. I felt safe to kick off my shoes (quite literally) in the classroom because they knew it was safe for them to do the same.
The week I received my completed evaluation was probably the most memorable and transformative week of my life. It began pretty typical, and ended in me walking out on my job, and a significant reason for that was due to my diagnoses and my knowledge gained in the prior year. You just can’t unknow some things.
My initial read through of my report went similar to any evaluation I’ve ever had in school or in my career. I looked at the overall results, ignored the positive things, and only truly registered what I got wrong.
Overall Results:
“Overall, Shantell’s symptoms meet criteria for autism spectrum disorder.”
“These results are consistent with a diagnosis of Attention Deficit/Hyperactivity Disorder, Combined Presentation.”
Feeling relieved that I “passed” and I was right about my suspicions, I quickly moved on to my weaknesses.
What I got wrong:
“Behavioral observations during testing included a tendency to lose focus and ‘space out’ during certain tests, as well as a tendency to interrupt and then ramble when answering questions.”
“She engaged in little chit chat and seemed to prefer talking about deeper subjects like oppression, trauma, and advocacy as they related to her occupation and ADHD/ASD.”
“Occasionally, Shantell was observed rocking seemed to perseverate on some testing subtests as well, ignoring the examiner’s cues to move on or make a best guess. This occasionally led to her not receiving points due to lapsed time. Shantell appeared to become frustrated by some of the surveys administered. She at times, perseverated, getting hung up on question details and nuances. At times, this made it hard for her to be decisive on how to interpret each question.”
Yep. All of that sounds like me. I felt embarrassed that this professional noticed those things. I know I was intentionally unmasking, but it made me sick to my stomach to read those things. What I have come to understand now is that our medical model is based on deficiency. Medical professionals look at the ways that you deviate from “normal” and they label you based on that. Normal is defined by our overall society. Autism and ADHD are absolutely disabilities but not because there is something wrong with my brain, but because brains like mine are not valued in our society, so our systems are not designed in a way that allows me to function how I need to.
I had already been realizing that for some time, but my understanding of this reality was surface level and still very ableist in nature. It takes time to break a lifetime of neural pathways built in the brain.
Even that surface level understanding was enough for me to begin to see how the education system was harming students everyday. How I was harming students everyday by choosing to participate in it. I have always spoken for the kids who struggled in school. Advocating for flexibility in the classroom. Begging for accommodations. Pushing back against thinking that blamed the students and their families. Despite all of that, I still showed restraint. I was too afraid to fully go against the system for fear of looking like a failure. The last year of my career that restraint began to slip. I would call out inappropriate ways that adults were treating kids. I stopped caring what my colleagues thought about me and what my boss thought of me. I was advocating for those who could not speak for themselves. Who were victims of this system. I was advocating for a little Shantell who deserved to feel safe at school. I was armed with years of knowledge, and my own lived experience.
While the weaknesses in my evaluation did sound like me, so did this:
“While determining diagnostic criteria is certainly an important part of psychological testing, codes and labels do not paint the full picture of Shantell’s unique self. Shantell is a social justice warrior and a champion for the students she serves – despite the exhaustion and barriers she regularly faces both internally and externally. Her passion for teaching lifts her students up and helps them thrive in a world that is not designed for them. The cost to Shantell is not insignificant, and a lifetime of internalized ableism damaged her emotional regulation skills, ability to form relationships, and trust in her own self. In spite of these difficulties, she has worked hard on her own self-awareness, and uses this to model self-love and self-care for her students. She is extroverted and social, and though her humor can at times be self-deprecating, she has a knack for appreciating the absurdities in life in a way that is self-protective.
Shantell’s test results demonstrated good attention to detail, the ability to focus on an area of interest, excellent vocabulary skills, a direct communication style, the ability to master a behavior and engage in it consistently once it is learned well, independent thinking, unique problem-solving style, and determination and persistence.”
I have been owning for some time that I have a neurodivergent brain. I have openly written about having ADHD on social media platforms. I realized that even though I have had this report since February and I have shared many things that implied what the report confirmed, I have never openly owned this significant part of who I am. Fear is a powerful force. I can say I don’t care what others think of me, but the truth is that little Shantell does care. She’s terrified of rejection. She’s terrified of being wrong. But Little Shantell deserves to loved for who she is, not who she pretends to be.
Nothing was ever wrong with little Shantell. She was autistic.
I am autistic.
