Could I Be Autistic?
I had concerns regarding development with my son, my first child, as early as when he was 2 years old. As I had learned with myself, most of my concerns were dismissed or explained away. After years of dead ends and wondering if I was crazy, and even when teachers, school administrators, pediatricians, specialists, and even family and friends dismissed my concerns, I followed my gut and got my son a full neuropsychological evaluation. He was in 3rd grade and he was struggling, but he wasn’t struggling academically and it felt like his struggles were invisible to most people except me.
I was able to find a center who specialized in well-rounded neuropsychological evaluations in my area for kids and the results were in. At the age of 8, my son was diagnosed with Autism Spectrum Disorder/ ASD (without accompanying cognitive disability), Dyspraxia (DCD), and BECTS, a form of epilepsy that causes focal seizures mostly when sleeping. I felt happy that I pressed on, even when no one seemed to see what I saw, but I also felt quite lost. My only previous experience with autism was my nephew who has an accompanying intellectual disability and a friend my son had made at school who was diagnosed with ADHD/ASD. His friend and speaking with his mom was how I realized he may be on the spectrum in the first place. But, where was I supposed to go from here? The recommendations made for resources on his evaluation report didn't seem to fit who we were. Naturally, I knew I needed to learn more and acquaint myself with the autistic community. I quickly realized I needed education, patience, and understanding to be a better mom for my son. I wanted this info straight from the source, not from doctors or organizations that are not run by autistic individuals themselves. I quickly found the #actuallyautistic hashtag and quite a few social media groups that lead me on path to my own unexpected self-discovery.
The path I now found myself on had spun my world into disarray, but NOT for the reasons you may think.
Everything I was learning about autism was new and I was surprised about how much I didn't know about different presentations of autism. I was sad there was such a large and diverse community of people I knew nothing about and I was sad because my son was one of them. A severely misunderstood community of people, just like my son.
I even felt a little guilty as a neurodivergent person with ADHD (diagnosed around the age of 12) I never took the time to learn more about other neurotypes or learned how I could be better for them until my own son was diagnosed. To learn more, I bought dozens of books and I joined FB support groups which helped me to learn quite a bit of information in a short period of time. I obsessively researched autism's history, controversies/scandals, and soaking up the most up-to-date information I could find. It started to become the only thing I could think about or talk about. It was like I had found a new drug and no amount of new information was enough to satisfy me.
During my obsessive research, there was a single moment that would completely change my life forever...
In one of the Facebook groups I had joined, a poster with a recently diagnosed autistic son, just like me, mentioned her “AQ” score (The Autism-Spectrum Quotient is a self-report diagnostic tool used by professionals and self-diagnosed individuals alike) and was asking what her score meant. Before this, I hadn't heard of any online self-tests and without much thought, I opened the AQ and began answering the questions. It only took answering 3 questions when it hit me... I thought to myself, “Oh no……….” (long pause). I knew exactly where this was going. I scored a 40 out of 50 possible points. For reference, a score of above 32 is a likely ASD diagnosis and above 26 is a possible diagnosis.
At no point in my 34 years did autism EVER cross my mind as a possibility.
No adult or doctor has ever mentioned it to me. No teacher, work supervisor, or even my family ever noticed any social issues. I always made eye contact, or at least this was never mentioned as an issue. I didn't noticeably "stim" or flap. How could I be autistic? I started to think about the autistic traits I had been reading about. I seem to communicate well and I am good at describing what I need or want. I own my own business and the business was successful. True, I never excelled in school, but that was due to my ADHD diagnosis as a kid (and then re-confirmed as an adult), right? Sure, I could never hold a job and pretty much all of my jobs ended badly with bridges burned, but that was also from my ADHD... or so I've been telling myself, even though doctors in the past had told me that isn't necessarily a trait of ADHD. Could I have been completely misdiagnosed? I was confused and I wasn't processing the test results well, so I ran right downstairs with my mouth WIDE OPEN and with a shocked look on my face, my husband noticed my panicked demeanor and jumped up and said, "WHAT'S WRONG?". I told him I took a test for autism and I scored really high. I asked him, "Could I be autistic?" He responds as he normally does with new information and stayed neutral. My first thought was to research this fake test, and I even made my husband take the test. He was CLEARLY neurotypical, so I knew if he scored similarly to me this test was bogus. He scored a 13. Crap. I then researched more to see if this was a reputable source, but all of my research showed the AQ was a pretty reliable and educational resource for autism diagnosis in adults. Since no diagnostic tool/test is meant to be a complete picture of a diagnosis, I decided to take as many tests online so I could to verify this brand new idea that I could be on the spectrum.
That wasn't enough for me, so I also had my mom and sister also take the test. They both scored even lower than my husband, which if this test was reliable, that would make sense. Damnit. It was time to face reality, but what did it all mean? Where do I go from there? How could I have made it 34 years without a single clue that autism was possible for me? If this WAS real, why did not even one other person in my life ever have suspect autism and/or mention it to me? How did every teacher and doctor miss this? Especially the doctors I had seen for past mental health and neurodivergent issues, including ADHD as a kid and adult, not have seen it? I went back to the original post that started this internal debate and I asked what it meant if I had a score of 40/50? A commenter suggested I research symptoms in autistic women and see if it aligned with me and my experiences. The first list I found was this list of traits specifically from girls and women on the spectrum.
After reading that specific list and relating to probably 98% of the traits/experiences on that list, I knew it was real. I felt it in my bones. Before reading that list, I never "saw myself" or related to anything so intensely. No other list of symptoms, traits, or ANY type of list ever made sense, even ADHD.
Not only did I align with almost every single item on the list, quite a few of the traits I struggled with either currently or in my past.
I decided, just to make sure, to take every test I could find online for autistic, or suspected autistic, adults. I scored within an autistic range on every single test and most of them I scored higher than most already diagnosed with ASD. Here is the kicker: One of the tests specifically measured social communication. This was the thing that bothered me and was the hardest to wrap my head around. How could I be autistic if I felt I had always communicated for myself so well? I had always felt I was better than others at communicating... I was always direct, honest (even when it hurt others), and precise. I could read other people better than most, almost like I could predict their next move in most situations. But when I took the 2-part communication (voices and faces) test, one of the first faces it showed was a woman making what I thought was a happy face. It is multiple-choice, and the 4 options given to choose from were negative emotions.
Could it be possible that it was always ME who had been reading others wrong and not the other way around like I previously thought?
Was I always the one with the "problem"? I never realized until that moment that communication is a 2-way street and that it was possible to be able to communicate effectively myself while also struggling with receiving social communication. That was not easy to realize at the age of 34, but it made sense considering my negative work history and social life (or lack of) all of my adult life. When I did not do good on the test measuring the ability to hear and visually process communication it honestly felt like my world as I knew it was crumbling and it really was...
It was the first step toward taking off the mask.
I shared the list that resonated with me so deeply with my husband, mom, and sister. All 3 agreed the list sounded like me. My mom even confirmed it sounded like me as a young girl. But where did I go from here? I felt lost, alone, and confused.
With quite a lot of back and forth, I decided to pursue an official diagnosis. I scheduled an evaluation with a local doctor and I was delighted to find openings within 2 weeks. Until then, my obsessive autism research was consuming my world and I had no self-control over it. It was all I talked about and all I could think about it. I had to learn more, research more, absorb more information, and figure out how the hell to process all of the confusing emotions and feelings I had. I kept reminiscing and recalling events in my past that were puzzling for me at the time that now made sense. Literally all of my past experiences that never used to make sense now could be explained by an autism diagnosis. What I used to think was my "character flaws" began to make sense. Every new detail I embraced about myself made the possible diagnosis even more real. Every day felt like a rollercoaster ride including moments of happiness, moments that felt like mourning or a deep loss of self and even depression. It felt good to know that the situations that had always puzzled me and those around me now had a name, but it didn't improve how I felt about them. On the other side of all of this, it felt like a pill that was way too large to swallow even though I was trying to.
I was fully self-diagnosed (and I don't think anyone could ever convince me otherwise) but I also struggled with a new kind of anxiety I hadn't felt in a long time. I generally stopped craving validation a long time ago in my teen years as I had accepted it was typically something that wasn't going to happen for me in most situations but now I felt the need to be validated and I was insecure. What If I couldn't get an official diagnosis? What if I really wasn't autistic and I had it all wrong? Autism research has shown to be harshly one-sided favoring the people who had been studied the most (boys and men), and there have been very few studies done on autistic women and girls.
Over the weeks of frantic and compulsive research, I came across countless testimonies of women who KNEW they were autistic but couldn’t get a diagnosis with a professional. Would my family and the people around me believe me if I didn’t have an official diagnosis? I had been trying as hard as I could for YEARS to appear normal. I always hid my struggles. I had masked being normal so good that I had everyone fooled. Would they all discredit me or think I am a fraud? Do I tell my clients? Do I go "public" or keep it a secret for close friends and family? Every decision felt hard.
I decided to wait until I had my evaluation to decide how I could proceed. All future endeavors would remain unknown until then...
