Journey to Discovery: My Autism Diagnosis Story
- Samantha Lynn Miller
- Nov 4, 2023
- 10 min read
This is a story that I’ve been wanting to tell from sometime, but I didn’t quite know where to start. I was advised by my therapist, some time ago to share my story and to share my knowledge. At the time I just couldn’t. I was angry. Angry at the world for not seeing my struggle. Angry at the world for not knowing how to accept people that were different. I was angry at all the people that chose to treat me unkindly whenever I showed up as my authentic self. I didn’t want to tell this story until I was able to do it without anger and resentment. Many people failed me. My teachers, doctors, therapist all because they weren’t trained to see beyond a stereotype. Most don‘t truly understand what being on the spectrum means. Nor do they have the capacity to comprehend how someone who seems to function on the outside could be Autistic and actually need support at times. Having ADHD just insures that I am at constant war with myself. There are so many layers, but in this blog post, I am going to attempt to hit the heigh points and provide you with the information that I believe to be most relevant.
Growing up, I’ve often asked my friends “what was wrong with me”. I knew I was different, but I lacked the vocabulary to be able to clearly convey what I meant. So, their response would naturally be “there’s nothing wrong with you”. I never believed it. I knew, deep down, I didn’t enjoy doing the same things that all the other girls enjoyed. I wasn’t like other teenagers my age. I was just pretending because I knew if I didn’t I wouldn’t fit in and that has severe consequences. Consequently, I learned to act at a very young age. It was survival and it worked. It kept me off the radar of bullies for the most part until I encountered a more nuanced social queue that I didn’t understand. Then people typically either looked at me like I was an alien, or they completely iced me out of the conversation. Those of us who are neurodiverse know it, and we spend a rather large amount of energy trying to appear to be normal.
One day I came across a post from one of my friends on social media. He was sharing his journey to becoming diagnosed with ADHD. As I read his post, I couldn’t help but resonate with his story. During that time, I had noticed that I was having difficulty with things that I didn’t see other people struggling with. Things would happen that seemed abnormal to me, and when I asked around it either didn’t seem “normal” to others or it wasn’t something that the person had ever struggled with. For example, appatently, people to go through their day with a constant dialogue going on in their mind. Also, I noticed, as I was practicing, I had issues with inverting notes on the staff (I play the piano). I would read the notes from left to write, but my hands would invert them somehow. It felt involuntary like I couldn’t control it. To me this was more of a symptom of dyslexia which I also thought I had. Intuitively, I always new I had ADHD, but I never understood how because my understanding of ADHD was based on a stereotypes. I was used to being around my male cousins who had ADHD. One of which had more of a severe case. I was able to sit still for hours on end and focus on things so the diagnosis didn’t quite make sense to me. So I went to the internet and I took a test for ADHD and Dyslexia. They both gave me an unofficial diagnosis. Congratulations, you’re neurodivergent! At that point I was intrigued. It wasn’t long before I decided to peruse a formal diagnosis. I reached out to my friend to find out where he was tested. After calling the facility, I soon realized that a diagnosis may be out of reach. The cost was 1,500 out of pocket. My insurance didn’t pay for adult testing so the burden of cost would fall on me. I felt crushed. The thought finally understanding what was wrong with me, but being unable to acquire the help I needed was crippling. After sitting stunned in analysis paralysis, I decided to call back and ask the receptionist if she knew of any where I could get tested. She recommended me to a local university. The University handled testing on a sliding scale. It would only cost around $400. I called and I was placed on a wait list and the rest is history.
Fast forward to my testing day. It was about two months later. We were still deep in the pandemic so I had to go through the evaluation over zoom. The evaluation was 4 hours long. The test seemed to be broken down into three parts. Don’t quote me on this because this part is a little fuzzy. I believe there were three parts to the exam that tested my IQ, reading comprehension, and memory. Sitting through the test administrator reading off a series of questions for four hours was painful. I was so hyper focused (I didn’t know the name for it at the time) that when we were done I had a headache. I couldn’t do anything else that day. I was done. I think it took about 4 weeks to get the test back. Turns out I was right. I had ADHD. I was shocked by my diagnosis, not because I had ADHD, but because she said that I didn’t show signs of dyslexia. I was almost certain that I was dyslexic. To this day, I still believe that I am dyslexic. I remember as a child having issues with spelling. Specifically, I would confuse d’s with b’s and P’s. They look the same. Words with the same sound and different spelling/meanings still throw me off. I have trouble reading left to right, and I still use my fingers to count. I couldn’t let it go. I knew what I was experiencing was deeper something bigger, but I couldn’t quite put my finger on it.
I decided to learn more about my new diagnosis. I began to research ADHD to gain a better understanding. I didn’t understand how this could have been missed in my childhood. I soon discovered that ADHD presents differently in women. I struggled early on in school. I had a real hard time understanding the structure of of the school day. I felt like it was being imposed on me. After talking with my mom, she told me something that surprised me. My mom to walk me to class for half the school year because I couldn’t remember how to get there. All the halls in the school looked the same so I would get lost. She had to help me figure out a system for finding my classroom. I had a difficult time with math and reading, overall learning. Kindergarten through first grade was rough for me. By second grade, I just learned to stay quiet and figure it out, but I was still showing signs of learning issues. My teachers never once suggested to my parents I may have a learning disability; however, one teacher in particular never hesitated to call my mom when I wasn’t “behaving” or “engaging” or I wasn’t listening, or my favorite “she’s not applying herself” AKA being lazy. It was viewed as me having a behavioral problem rather than needing help. Help that I asked for, but was denied. I found myself in trouble all the time which frightened me because I didn’t understand why. I couldn’t quite get the logistics of being in the classroom. To this day making mistakes frightens me to my core. I was a quiet kid. I tried so hard, but I never understood why I was in trouble. As I continued to research, I came across this article about the connection between ADHD and Autism. At that point, a lightbulb went off. After reading this article, I new, in my gut, I was on the spectrum. Unequivocally without a doubt. At that moment all my life’s questions had been answered. Everything made sense. I immediately had two questions: what does this look like in women (through my ADHD research I new it was different) and how do I translate this information from child to adult. Most of the information on the internet in regard to autism relates to children. I soon found myself going down a rabbit whole. I went to youtube. I looked for people who were late diagnosed and sharing their experiences, and through that information began to jog my own memory. I started writing down my experiences from childhood, my teenage years, my work life, and any difficulties I had socializing as an adult. Especially, any situations that I didn’t understand. Finally, after doing a massive amount of research, I decided it would be worth it to seek a diagnosis.
Finding someone to test me for autism proved to be way more stressful and difficult than getting tested for ADHD. I knew I needed someone that specialized or was at least knowledgeable about testing adult women. Early autism research was largely focused on white males, which left girls and children of color more likely to go undiagnosed. Boys are 4.3 times more likely to be diagnosed than girls. Black children and Latino children are more likely to go undiagnosed or receive a late diagnosis due to the lack of inclusion in the earlier studies. By now, I new that I had learned to mask, which is something that girls tend to master early on to appear to be normal. They typically mimic someone the deem to be successful at socializing. I knew that by now this behavior was subconscious. My stimming happens but it’s subtle. I’d learned to hide it. Although, in my opinion, my inability to make and sustain eye contact often gives me away. I knew I needed someone who was up to date on their research. After days of researching and phone calls, I found one person that was willing to test adults. The test would cost $2,500 and they typically only tested the parents of the children they had diagnosed (It’s thought that Autism can be genetic). When I got off the phone, I immediately broke down. Here I am in need of help and I literally can’t get it because I’m an adult. As if autistic children don’t grow up to be autistic adults. How do you design criteria solely around one group, and expect to not miss anyone in that process? I began to look for a therapist because going through this process was unearthing things that I didn’t know how to work through. I looked for someone who had experience working with adults with ADHD and Autism. I found a company that helped match people with therapy based on their needs, and I noticed they had testing listed on their website. They gave me contact information for one neuropsychologist that specialized in testing adults. This was proof that, in life, you only need one yes! I reached out to her and she did testing on a sliding scale, but I would need to get a referral either from my pcp or a therapist. Through my youtube research listening to other late diagnosis stories, I knew choosing a therapist was my best bet. I found someone through the same network, and I sent her an email explaining my situation. To my surprise, she was happy to meet with me for an evaluation. During, my appointment I let her know that I had written down my experiences both past and present. She read them and asked me to elaborate when needed. By the end of the appointment, she was happy to write me a referral. It took a couple of months to get an appointment with my neuropsychologist. The evaluation took about 2-3 hours. Within a couple of weeks I had a diagnosis.
Here’s my Medical Disclaimer: I am not a medical professional. This blog is solely based on my personal experience and research. With that said, I think it’s fair to say that if you’ve done the research and you identify with the traits of Autism/ADHD, it may be worth it to peruse a diagnosis. I know that my situation might be somewhat rare, but once I found the people I needed to help me, it was fairly easy to get what I needed. I know that’s not the case for most. I am always here for support so if you have any questions please don’t hesitate to drop a comment below, or if you would like to be more discrete feel free to email me. Let’s start a dialogue. There are several layers to this journey. To avoid me being all over the place, I presented what I thought to be the most important aspects of what I encountered. I am going to leave you with a few things to consider if you are perusing a diagnosis.
What I Wish I Knew Before Pursuing A Diagnosis:
Find a therapist that specializes in helping neurodivergent adults, if you can. I know that not everyone is not able to afford therapy, but if you are, it’s worth it. As an adult, you won’t have access to any of the programs that they offer children. This includes basic therapy as well as occupational therapy. They don’t send you home with information. You are left with a diagnosis and the burden of figuring out how this diagnosis affects your life. A therapist that specializes in neurodivergence will help you understand what’s happening, and offer tools to help you work through.
Be prepared to second guess every social interaction you have ever had. For me, this was the hardest part. I felt like my life had been a lie. I had a lot to unpack after my diagnosis including a lot of resentment and anger. I didn’t trust myself or other people for that matter. You will grieve that life you thought you had as well as your future. Be patient with yourself. Give yourself grace and time to work through what you need. Surround yourself with people who support you.
Even though you have a formal diagnosis, people will still choose not believe you. They may even shun you or think you are crazy for “pretending” to be Autistic. There’s a lot of stigma surrounding Autism. Try not to give this too much weight. My diagnosis taught me a lot about myself and the company I keep. Some people are worth educating, and they will want to understand, and some won’t be able to see beyond the stereotypes that they’ve learned. Some will think that you shouldn’t be talking about it at all. Govern your energy according.
Do the research and document everything! The best way you can combat any potential push back is with knowing the facts and being able to clearly articulate how you are affected by Autism and ADHD. I think this was my biggest asset. Having documentation showing the difficulties I encountered as a child as well as an adult took the pressure off of me. Though I am not non-verbal, in times of high stress and anxiety, I can have trouble speaking and clearly articulating my needs AKA Selective Mutism.
If you made it this far, thank for hanging with me. This is a topic that is near and dear to my heart. I will reference this journey often as I am still trying to build a life that allows me to live authentically in an environment that wasn’t created for me. Now that I have the information, I am able to build systems around my life that help get the support that I need. Below, you will find links to my references and articles that I find both informative and interesting!
References/Interesting Articles:
Email Me:
Samantha.m@blackgirlcentered.com
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