Preface: Two years ago, I wrote this in the notes section of my phone. Today, I share it for the world to read. This essay highlights my search for answers, a journey marked by confusion and a lack of support. Since then, my life has taken a pivotal turn: I was diagnosed with autism. This revelation has been both enlightening and challenging, reshaping my understanding of myself and how I interact with the world around me. It’s a journey of self-discovery, learning to make accommodations for myself, working through feelings of loneliness and understanding that those who wander are not lost. 

Please enjoy “No One is Listening: Seeking an Autistic Diagnosis as a Black Girl”.

Visible and Hyper-Visible

When I close my eyes and bring myself to reflect on my educational experience as a young Black girl in a predominantly white school district, I struggle between two salient and pervasive realities, the overwhelming feeling of invisibility and hyper-visibility. Existing within both these matrices required me to carry the full weight of being watched and ignored at the same damn time. In a sensical way, one would think that being hyper-visible in a school may glean fulfilled wants and needs as teachers and school building personnel always kept a watchful eye over me. In this case, I would have received academic interventions and support that nurtured my learning differences, and my early displays of autistic traits would have been met with appropriate differentiation strategies and accommodations. I should have had a team of people invested in seeking the appropriate testing accommodations and learning environments, and I should have also experienced fewer disciplinary actions because it would have been understood that my brain worked differently. 

A level of cognitive dissonance settles in when you realize that the whole world is watching you without seeing you. This is where the invisibility piece comes in. As a child, I truly thought that people could not see me because I was ignored, dismissed, or labeled as a bad kid for so long. I remember seeing a classmate at a grocery store and waving to her and fell to disbelief when she waved back at me. My wave to her was more of a test to see if I really was invisible because, at school, I was certain that my presence was somewhat of a phantasmic aura and not of flesh and bone. My teachers were integral in creating this complex, and to some degree, as a thirty-year-old woman, I still carry the urge to wave at people in public as a reminder to myself that I do exist and that I do matter. 

No One is Listening 

As a child, I knew that my brain was different from my peers. My earliest memory of this difference was in fifth grade during a lesson on fractions. As I always did, I had to stay after school with my teacher to receive extra help. After being fed up with trying to teach me how to reduce fractions, she jotted the answer on the whiteboard after my delayed response tested her patience. She said, “I don’t know why this is so hard for you, Tyana,” and that was the end of the lesson. I remember sitting in deep confusion because I, too, did not understand why school, in general, was so hard for me. 

In class, I would often sit in my chair with tears welling in my eyes because I could not understand what the teacher was saying and why the other kids were busy at work while I tried to figure out the directions from five minutes ago. I often pretended to understand, and in most cases, I faked it by imprinting. It often felt like my brain was a minute delayed from everyone else. I knew something was wrong early on, and I often would come home and complain to my parents that I did not understand what was happening in school and repeatedly told them that I thought I needed help. But my trouble learning and processing information was not just an in-school experience as I also struggled at home. For example, one night, my dad tried to help me study for my spelling test. The words were “skip” and “school.” He tried making a rhyme out of both words because I kept confusing the spelling of each. Eventually, he became frustrated and left the kitchen table. Frustrated, too, I went to my room and cried because I could not understand what was wrong with my brain once again. 

Side note: My parents did their best and also didn’t know enough. It was their first shot at having an autistic kid and tried to figure it out as they went. That’s true for all parents. 

My report cards were frequent reminders that I needed help, but my invisibility impacted the support that I was offered. Report card comments such as “Your child talks too much in class” or “Tyana is frequently distracted or is distracting to others” were weaponized against me and a metric that was used to define my level of work ethic without addressing the ways in which the environment was not conducive for my learning. I was perpetually told that I didn’t need extra help and needed to be quiet and listen to the teacher. Since the adults in my life did not advocate for me despite having a front-row seat to my academic struggles, I learned how to create my own support and accommodations. 

Figuring it Out 

Throughout high school and college, I became skilled in controlling my environment in ways that nurtured how my brain worked. While these skill sets allowed me to get by, they were and continue to be incredibly harmful in bringing people to see that I am a neurodivergent adult who needs a range of support. My masking has become so second nature that my ticks know when it is safe and unsafe to come out (now they do their own thing, but that is beside the point). Throughout high school and college, I went under the radar because my systems were well set up and established. But my survival skills have been mistaken for that of a “successful” neurotypical person so much that different autism specialists cannot look past my academic and professional accolades and see a neurodivergent person. 

Seeking Support

After spending 29 years in my body and struggling for most of those years, I decided that I needed to seek a formal autistic diagnosis. I eventually scheduled an appointment with my primary care doctor and invited my partner as a support system. As a Black woman, I am often invalidated in medical spaces, so having support has always been a requirement for any medical experience. During that visit, I expressed to my doctor that I experienced the following traits. Below is the exact list that I read off on my phone. 

• I have an intense reliance on routine
• I have trouble communicating my thoughts and emotions
• I am bad at maintaining friendships 
• I tick when I am anxious, stressed, or tired. I can suppress this tick sometimes.
• I plan things meticulously before doing anything
• I become incredibly fixated on specific activities or things
• I have trouble processing light, sound, and smells 
• I notice small details, patterns that others might not notice
• I avoid eye contact; it makes me very uncomfortable 
• People often find me as blunt or rude when I think I am engaged/well-intended 
• Most of the time, I prefer to be alone and isolated
• I find it difficult to understand what other people are thinking or feeling 
• I self-soothe/stim 
• Anxious during social events 
• Anxious when too many sensations are happening at the same time.
• Strict food restriction practices 
• Trouble processing multi-step direction
• Trouble remembering information/ memory loss
• Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects)
• Sensory-seeking behaviors (e.g., craving certain textures or movements)

After I explained each of these characteristics in-depth and how they impact my daily life, my doctor mentioned that he thought it would be a good idea for me to visit a mental health counselor. Although I already had a therapist and explained that, he said that talking to their (the offices) mental health therapist would help streamline an autism diagnosis. I knew that what he was saying did not seem right to me, but I trusted his professional judgment because he has been my primary care provider for 20 years. However, I was also mindful that in that space, the likelihood that my white, middle-aged male doctor would listen to a nearly 30-year-old Black woman’s concerns around being autistic was less than likely. Nonetheless, I followed his recommendations and scheduled a session with their on-site counselor because I did believe it would help “streamline the process.” 

Upon meeting with the mental health therapist, she starts the session by indicating that my file explains that I have anxiety that has been debilitating to my life. I let her know that while I struggle with anxiety, this session was not meant to discuss my anxiety but rather to unpack some of my autistic characteristics. She replied, “I do not specialize in helping patients with learning disabilities. I left six minutes into the session and was billed $220. I left feeling dismissed and frustrated by my primary care provider for not listening to me. A few weeks later, I reached out to a medical professional in my area that specializes in diagnosing autism in adults. After an eight-minute phone screening, she said that I am not autistic and that I might be struggling with ADHD and anxiety, and while she said that I do experience a variety of autistic traits, she would be unable to treat me. I hung up the phone and cried out of anger and frustration. Again, it felt like no one was listening. 

Listen to Black Women 

As a Black woman navigating this process, I have been greeted with medical professionals that fail to listen to what it is like to live in this body day in and day out and have always been told that I am fine. I know how different this process would be if I was a white male and because I am the antithesis of that, each appointment is met with a diagnosis that does not encapsulate my full human experience, or I receive a diagnosis ridden with bias and microaggressions. I want better and will continue to demand better. Recently, I decided to re-engage in the diagnosis process (after many tears and money wasted) and I am working with a new autism specialist. I start the diagnosis process in the upcoming weeks, and I am hopeful that this team of experts can help me receive the answers I have been looking for.  

Due to the myriad of struggles to get to this point, it makes sense that the autism community unapologetically validates self-diagnosis. This process is racist, inaccessible, astronomically expensive, and harmful. The hours of crying and the hundreds of dollars that I have spent to be invalidated and chastised for even thinking I am autistic have been horrific. I have to keep trying, and I will keep trying. Black people and Black women, especially historically and contemporary, fail to receive mental care, services, and support and this story is just a testament to that phenomenon. I am doing this because I plan to have a child one day, and in no way would I want them to have to go through this process should they also be autistic. I know I am autistic. I don’t need a piece of paper to tell me that, but my reason for seeking diagnosis supersedes my life as I plan to create life. I hope this blog helps support other Black women on a similar journey. In this space, know that you are not alone and that you know your body and mind better than anyone else and if they do not listen, make them listen.