Anne spent most of her life feeling misunderstood until she was diagnosed with Autism later in life. Everything started to eventually make sense, even more so, when her family was all diagnosed with ASD and they begin this new journey together. She wants to write about all of this because sometimes one’s struggles are silent and only through efforts towards inclusion can we all be more comfortable to communicate our struggles. And as someone who is rejection sensitive, she often fails to communicate her struggles because she anticipates that her struggles will lead to further rejection and the cycle continues. She hopes that sharing her vulnerabilities leads to at least one person better understanding themselves or an Autistic loved one. She is looking forward to sharing more specifics about her struggles as a neurodiverse family residing in Pennsylvania.View all posts
When most of my peers were celebrating middle age, I came to the realization that I wasn’t just weird and perpetually misunderstood. At the age of 40, I learned that I was Autistic.
You probably wonder, how did this revelation happen? My middle daughter’s trauma led me to learn more about myself, because I was distressed by how distressed she was. I sought out to help her and learned more about myself in the process. As I learned more about the neurodiverse population, I learned that my situation was much more common than I thought.
First, you have to understand this diagnosis only came after more than a decade of being told I was everything that I wasn’t. When I was in college, I met a professor who ultimately pulled me aside and asked if I had academic accommodations. I asked her, “huh? Why?” She said, “I don’t know that I have ever seen you pay attention in my class, but you also seem like you understand the content of this class better than everyone else. I thought maybe you had ADHD. My son has ADHD.” I apologized for appearing distracted and reassured her that while I might not look like I am listening, I was. Ultimately, her observation led to me discussing my tendencies with my family doctor. I described my behaviors and feedback that I received over the years, and I was diagnosed with ADD/ADHD. At this point, I didn’t really need any counseling or see any immediate need for accommodations, so I submitted the ADA documentation to the university and that was that. It wasn’t until I was in graduate school at the same university that the paperwork would be needed.
I was completing my master’s degree and it was time to sit for comprehensive exams. I was one of the most proficient students in the program. I was president of the graduate student council, nationally recognized by the graduate student honor society for my achievements. Basically, there was no chance I should struggle to sit for this exam. I knew and could proficiently demonstrate the skills for this degree. On the day of the exam, they were to be proctored by a tenured professor and were to begin at 4pm and end at 8pm. I entered the exam room, stored all personal items with the proctor and sat down at a computer. The room was cold, it was a computer lab and intentionally that way because the computers could cause the room to get warm in the summers. However, it wasn’t summer – it was December. I could barely feel my toes. There were eight other students at the computers. The proctor handed us the essay examinations and said, “You have only four hours. The computers are disconnected from the Internet and only Microsoft Word has been enabled for you to type your responses to the questions you preselected. You may begin.”
At that moment, it was like the squirrels in the nut room at Willy Wonka’s Chocolate Factory, frantically typing answers. All I could do was focus on the frantic typing. I couldn’t recall anything about how I had planned to address the questions, which was absolutely ridiculous because I had preselected the questions and had memorized outlines for each question. Before I knew it, someone had finished. Then I realized that I just had to write, write something or I would fail for sure. I typed right up until the very end, freezing, distracted, frantic, frenzied and turned in my exam.
Two days later, I was working as a graduate assistant with this same professor. She walks in the office we share, shuts the door, and says, “Anne, what the hell happened?” I stared blankly, thinking it was related to my work. She continues, “with the examination?!” Then I proceeded to explain how distracted I was, and she said, “Did you ask Andrew for accommodation due to your disability?” “No, I didn’t… honestly I couldn’t think straight at all and just tried to get something in. Can I retake the exam? I know the answers, I truly couldn’t focus with all of the others, and I didn’t think about asking for an accommodation.” Ultimately, I ended up having to attend school for an entire additional semester just to be able to sit for the graduate examinations again because they were only administered once a year. The second time, I sat alone in a windowless room and only a single computer. I aced those tests and obtained my master’s but learned a lot from that single experience about the importance of speaking up about accommodations.
Over the years, I sought out counseling because I felt like there was something more to what was going on in my head. Most of the doctors, counselors, or nurse practitioners were overwhelmed with patient caseloads and didn’t listen to what I would try to explain. One psychiatrist thought that I had psychosis and prescribed strong medication for what he said were “voices in my head and for hearing sounds that don’t exist in reality.” This topic, I would later learn by a licensed professional counselor, is a sensory processing issue and hyper awareness of sounds emitted from electricity and sensitivity to florescent lights, which is common for Autistic individuals.
For nearly 10 years, I took medication for bipolar disorder because a different doctor was certain that my hyperactivity, anxiety, and depression were indicative of bipolar disorder. It wasn’t until the medication caused grotesque side effects that a nurse practitioner assessed that I should try some other medication for my issues. I left her practice because I suffered for three years with adverse side effects under her care, and she neglected to assess that my struggles were from the side effects of the incorrect prescription.
I sought out a licensed professional counselor for a new assessment and ended up with a medical marijuana prescription and have been prescription drug free ever since. I never needed those mood stabilizers; I needed something that would ease the hyperactivity of my brain. Ultimately this counselor who identifies as Autistic, was the practitioner who offered appropriate support for my neurodiverse family. However, it wasn’t because I asked for support for myself, I asked for support for my middle daughter.
In 2020, my daughter was forced into online education due to COVID and this was the straw that broke my back. She started having emotional meltdowns that began to bring up emotions I resonated with from my own childhood. Most of which were unpleasant flashbacks from being physically hit because I was having a meltdown. This is when I returned to the counselor for support. I needed her to get support that wasn’t the cycle of abuse that I had experienced. That would stop with me.
Ultimately, this led to the diagnosis of an entire household of only neurodiverse individuals. My spouse is an unidentified Autistic, he presents with many classic male behavioral tendencies but is adamant about labels and the restrictions that sometimes go along with them. My oldest was hyperverbal and could speak in sentences when they were only a year old. My middle daughter was dubbed an old soul as a baby because she could read genuineness in facial responses of strangers. It wasn’t until my middle daughter received her diagnosis as Autistic that the rest of us realized we checked nearly all the boxes.
As I child, I loved to sing. I could match pitches perfectly. If I could hear the tone, I could match it perfectly. I didn’t have many friends, I struggled to maintain friendships and by middle school I really only had acquaintances from immersing myself in extracurricular activities, but not having any close friends. I was the model student in all Academics, competing in leagues and excelled at computers attaining awards leading to scholarships for my school district. I mention these things because in the past two years, I have learned that many late diagnosed Autistic women share similar experiences of being best in class. Mimicking social cues and masking better than last year’s academy award winner, but when they are alone, the amount of sheer collapse can happen. This Autistic meltdown is real and affects executive functioning. I can lead effective training sessions for hundreds of people and impress even the most intelligent doctors and executives with my creativity, but I have to ask for someone to help me to wash my laundry. Sometimes the simplest of tasks can overwhelm me. Last month, it was a presentation in front of a group of adults. No one knew this, I didn’t tell my boss, or anyone how much I agonized about it. No one knew I psyched myself up so much for this presentation. I agonized about it for three days. Once it was done, I couldn’t recall why I was so worried about it.
I wanted to write about all of this because sometimes one’s struggles are silent and only through efforts towards inclusion can we all be more comfortable to communicate our struggles. And as someone who is rejection sensitive, I often fail to communicate my struggles because I anticipate that my struggles will lead to further rejection and the cycle continues. I hope that sharing my vulnerabilities leads to at least one person better understanding themselves or an Autistic loved one. I am looking forward to sharing more specifics about our struggles as a neurodiverse family residing in Pennsylvania.