My Journey to a Late Autism Diagnosis
Trigger Warning: This post contains brief mention of self-harm and suicidal ideation.
I am not going to lie. Growing up with undiagnosed autism was tough. Teachers sent me outside to cry when I couldn’t express myself. Children pinned me down and poured hot gravel down my shirt demanding that I speak, then laughed at me for how I sounded when I finally yelled at them to leave me alone.
I remember being terrified to pop the balloon on the calendar in second grade when my teacher told me I couldn’t skip my turn this month. Crying and shaking, I held the pushpin in my hand and tried desperately to will myself to pop the balloon, but I just couldn’t physically do it. My teacher took my hand in his and forced me to pop it. I burst into uncontrollable sobs from the startle and noise it produced, and was deeply embarrassed.
Childhood With Undiagnosed Autism
I loved life. I deeply loved life. I loved running, jumping, playing, spinning in circles until I was sick, waiting until I recovered, and then doing it again. I loved freeze tag, hide-and-go-seek, toads, snails, spiders, bugs, and leaves. I loved making all sorts of noises with my voice and my mouth. It felt great to experiment and repeat the sounds I enjoyed making the most.
I sang my day into reality. Everything turned into a song with no set tune. I sang the alphabet to the tune of as many songs as I could think of after being thrilled that my younger sister brought a new way to sing the alphabet home from kindergarten.
Frustration With Communication
My frustration with communication started when I was four years old. I remember knowing what it was I wanted to say, thinking I was saying it, but no one could understand me. They would ask me to repeat myself over and over before giving up. The neighborhood children would gather around me. A teenage sibling of one of the neighborhood kids once joined to examine me at the request of her younger sibling.
She lured me into talking by being so kind to me. I felt special because an older kid wanted to be my friend. After a few minutes of interaction, she said, “I don’t think she is retarded exactly, I think something is just wrong with the way she talks,” and then this person, who I thought was my new friend, left.
Although I had frustration communicating at home much earlier, this was the first time I became self-conscious of the way I spoke, and it was devastating.
I Loved Life, and I was Deeply Depressed
My innate joy and love for life were not enough to stave off deep depression. I wanted so badly to connect with my peers and have friends, but all too often I was ridiculed and mocked for reasons I didn’t understand. I was different. Very different. I could tell because the kids didn’t treat each other the way they treated me.
But why was I different? The only reason I could come up with in my young school years was that something was totally wrong with me. There was no way to fix me. I shouldn’t even be alive, because nobody wanted me around.
I had a few good friends growing up. I had three friends in the neighborhood until 3rd or 4th grade. I had one friend in 5th grade and met my next friend in 7th grade. But these friends weren’t always available, and I still l had a lot of severe emotional issues from my experiences growing up. In 4th grade, I had suicidal ideation for the first time and even experimented with hurting myself.
The suicidal ideation became more intense in 6th grade. I would sit at the side of the house for hours yearning for death and using my religious beliefs to stop me from following through with a plan I had to take my own life. I had no friends in 6th grade and wanted desperately to feel like someone loved and accepted me. I didn’t know how to fit in and be accepted by my peers, and my home was chaotic.
Learning About Autism for the First Time
When I was 12, my mother mentioned that a boy down the street was autistic. I spent a lot of time during my childhood roaming the neighborhood and decided to walk by the house she had pointed out on our drive home from the supermarket.
I tried not to be noticed as the boy, a few years younger than I, made a repetitive noise and spun around in circles in his driveway. This reminded me of how I felt so good when I did the same thing, especially when I was younger. I went home and asked my mom what being autistic meant. I sat stunned as she described autism, thinking how it described me perfectly.
But I did not tell her that I saw all these traits she mentioned in me. I thought to myself, “Mom, don’t you see that you are describing me?” I thought that if she did, she would mention it to me. But she didn’t say a word about my challenges and my behaviors. I thought that I wasn’t impacted enough to claim autism, even if it described me perfectly. After all, the boy down the road couldn’t talk, and I could.
Life as an Undiagnosed Autistic Teenager
Thankfully, in 7th grade, life improved immensely. I developed a strong friendship with a girl who was new in town (and is my best friend to this day, over 25 years later). I had a Spanish teacher who stood up for me when a boy said something cruel in class. I was motivated to do well in school because I wanted to please my Spanish teacher and ended up getting straight A’s for the rest of my school years.
It didn’t matter so much that I didn’t fit in, because I had a great friend and a great teacher. That was enough for my 7th and 8th-grade years. I was happy.
One day in Spanish class, a boy mentioned the sweats I was wearing. I wore this sweatsuit long past when it fit me because I liked the turquoise color, I liked how comfortable they were, and I liked the dancing ballet bear on the sweatshirt. The pants and arms of the sweatshirt were both several inches too short.
I looked around the room when he drew attention to my attire and discovered that no one else was wearing sweats. During passing periods, lunch, and my other classes, I scanned the other students. Not a single student was wearing a sweatsuit, let alone one that was two or three sizes too small. It had never occurred to me that this was neither normal nor acceptable. I was mortified!
Relief From High School
High school felt like torture. The bullying got more sophisticated, and I was frightened to even be at school due to graphic threats that were whispered to me, out of the earshot of adults. At one point I was shoved into the bathroom sink and spat on by a girl I didn’t even recognize. I was almost always quiet, trying to disappear. Yet something about me screamed “target!”
Thankfully, my school had a program called College Connection. I interviewed for the program and was accepted. With this program, I would not have to endure my final year of high school on the high school campus. The counselor warned that usually, students in AP and honors classes with such high grades wanted to stay at the high school to receive top honors at graduation. I did not care. I wanted out.
At the local community college, I had three high school classes and 12 college units. I was right. Being out of high school was liberating! I was no longer the target of anyone’s aggression. No one at college paid any attention to me at all, except for one man, which led to lots of trouble. But that isn’t the focus of this post. That story is covered in another post!
Autism Self-Diagnosis Quiz
When I was a teenager, I was obsessed with taking online quizzes. In my typical teenage self-occupied state, I found these quizzes all about me to be fascinating. I still wondered why I was so different, and still remembered the conversation about autism that I had with my mom when I was 12.
I searched online and found a self-diagnostic tool. I took the test, and it calculated my results. According to the test, I wasn’t just “sort of autistic,” as some people say for those less noticeably impacted. I was way over the threshold for meeting the criteria of autism. Yet, I didn’t seem like the stereotypical autistic person, so I kept quiet about my suspicion, thinking I was not stereotypical enough to claim autism for myself.
Having an Autistic Child
I was 20 when my first child was born. I was obsessed with my baby and wanted to do everything right. I was sad and confused when he wasn’t reaching milestones. I desperately researched how to help him. Then, at age 2, he was diagnosed with autism. I was told that if he started to talk by age 6 or 7, there would be a higher likelihood that he would be able to take care of himself in adulthood.
I became his full-time therapist. With a variety of intensive interventions including teaching him how to read, he did begin speaking and was making makeshift sentences by the time he was four and a half. He has always been autistic, and he is happy, highly intelligent, and has a close group of friends. But again, the nagging question of my own autism kept surfacing.
Seeking Autism Diagnosis
Finally, in my mid 30’s, I sought a diagnosis. I filled out questionnaires, did assessments, and met with a psychiatrist who specializes in adult autism three times online before a final meeting in person. I was terrified of driving in San Fransisco, so I parked in Larkspur, took the ferry to San Fransisco, and then walked two or three miles to my appointment.
More questioning, more interviews, more observation. And then, a diagnosis. “Well, Leanna, I have enough information to make a conclusion about your diagnosis.” I eagerly nodded for him to go on. “You meet the criteria for autism. Autism level one with no cognitive impairment.”
I was so happy I almost cried! I was elated. I skipped out of his office so happy that I finally had an answer for my lifelong struggles. I was autistic! I wasn’t deeply and irreversibly flawed. I was autistic! And as a mother of an autistic child and as a teacher of autistic students, I could work with autism!
But before I skipped out of his office, I asked a question, to be very sure. “I know they changed the criteria recently to encompass things like pervasive developmental disorder into the autism spectrum diagnosis. Do I qualify because of the changed criteria, or would have I qualified even before?”
His response delighted me. “Oh, you’re very classically autistic.” And with that, I was ready to walk back to the ferry, cross the bay, and start my journey home.
Coming Out to Others
I still had trepidation surrounding telling others I was autistic. Not because I was ashamed, but because I didn’t think they would believe me. I spent my entire life largely trying to disappear so I wouldn’t have to deal with the trauma of rejection. I thought that people would reject the idea that I was autistic because no one had ever brought the idea up with me. It was too big a part of me to face rejection.
I began to tell people slowly, and no one ever said I didn’t seem autistic. In fact, the staff in my classroom looked at each other cautiously as they had obviously poked around this subject before, and then one woman said, “We know. We figured that out a long time ago.” Wow, ok. What a relief!
I was slower to come out to my family, but again, I wasn’t met with any obvious surprise. Mainly just references, such as, “Oh, that explains (insert various difficult aspects of my childhood here),” and some, “Maybe (insert names of family members here) are also autistic.”
It was most difficult to tell my therapist, who I had worked with for a few years by that point. He was not big into diagnosis and had never told me he thought I had autism. I had mentioned the possibility of autism to him a couple of times, but he never affirmed or denied this, which I took as a denial.
One day, about two and a half years after my diagnosis, a subject triggered a cautious suggestion from him. “Well, in the past we have thought maybe you’re on the autism spectrum, right?” Yes! I admitted to him that I had a diagnosis, which he told me would have been helpful to know a lot earlier on.
Now I was truly free to be myself. To claim my autism. To build my life without trying to be normal. To just be me.
Final Thoughts on Late Autism Diagnosis
I have met many parents who won’t get their child assessed for autism because they do not want to put a label on their child. For me, the lack of a label was the prison. I knew I was different from a very young age. I felt that fact painfully on every level of my being. Having a diagnosis wouldn’t have created the feeling of being different. It would have explained why I felt so different.
The part that hurt was that no one acknowledged it. I was clearly different, but no one sought to find out why. Not my teachers, not my parents, not anyone. No one wanted to mention it. Those who suspected I was autistic kept quiet. So instead of having a diagnosis, I thought I was unlovable, deeply flawed, and incapable of human relationships.
Since my diagnosis, I have flourished in life. I am loved. I am loving. I am lovable. I am capable of deep human connection. I just needed to come to fully accept myself before I could have any of that. And getting my diagnosis was a huge step toward finally accepting and stepping into who I am.
Read more at: www.autisticperspectives.com