When I was 3, I taught myself how to play violin. My grandma Rose had played, and it was hers. I would play it almost upside down with the scroll propped up in a corner. They just assumed I was bored. “They” as in most of my family (I was bored. Don’t get me wrong)
When I was 4, I would draw pictures of blood cells everywhere. I had my kindergarten teacher ask me once what I had drawn and I said “Hemoglobin. See, here’s the Heme part with the iron bonded to it and…” She cut me off immediately and told me to try drawing the classroom goldfish. I drew what looked like an orange marshmallow that was farting bubbles.
When I think of my behavior as a child…I have to wonder; how did they NOT know that I was autistic?! Like, WHY didn’t ANYONE suspect this?! I’ll tell you why; this was the 1980’s.
They BARELY had the concrete diagnostic criteria for Autism as it was, and it was 90% unrecognized in young girls. I know this because I have read just about everything I could get my hands on about Autism.
My brother Dan is also autistic. Dan was also diagnosed before he was 10 years old, thankfully. (However, it took forever for him to even get a diagnosis) I remember sitting in M-team’s (the 80’s version of an Individual Education Program) thinking; “Are you people kidding me?! Even I can look at him and say he is definitely Autistic.” My mother would leave these meetings visibly disheartened and frustrated. But it was helpful finally knowing so we could better support Dan.
And of course, thanks to a film character played by Dustin Hoffman, people called my brother, Rainman. These stereotypes were among the few descriptors of autism and no one thought anything differently. But I did. I noticed that most of my brother’s classmates were boys. And the ones who were girls, were often thought to be “a lost cause.”
The thing that made diagnosing girls so difficult was that we still had an emotional component to us. We didn’t know how it fired up or what to do when it did. But we had feelings, empathy, and there’s “no way that could be linked to Autism.” (Sarcasm)
But then again…maybe it was?
They didn’t quite make that distinction until the early 90’s. Unfortunately, 95% of girls like myself were either diagnosed with BPD or Bipolar Disorder. I was diagnosed as Bipolar. I knew that I wasn’t. I understood what Bipolar depression/ manic depression, (this was 1992-1993 hence the old terminology) was and how it presented and this wasn’t me at all.
But how was I to convince someone with an ME and a PhD that I wasn’t “throwing temper tantrums” and “being attention seeking”? I was, arguably, one of the strangest kids in my neighborhood.
I was also, arguably, one of the strangest teenage girls in the world.
1992 was probably the worst year of my life. I won’t say it was all horrible. I did get my little sister that year come August but everything up until then was something I wouldn’t wish on my worst enemy.
My dad’s mom, my Grandma Rose, was probably the closest thing to a living saint that I’ve ever seen. She was kind and thoughtful. She loved everyone and everyone loved her. She wasn’t afraid of having my brother and I there. She didn’t think differently of Dan at all. He just didn’t like it when she played the organ. And she basically told him she didn’t care whether he liked it or not.
My parents had been separated and were in the middle of getting divorced. I was that kid that PRAYED my parents would get divorced. This is another reason my grandma Rose was the greatest person who ever lived. She knew there was something different about me, (and my Dad for that matter, but that’s a whole separate story.)
Staying at her house got my brother and I away from our mother. We needed that relief too. At that time, my Mum was fighting some profound, undiagnosed mental illness and it wasn’t a healthy environment. So, the divorce was welcomed, by all parties. However, in February of 1992, my world shattered, I lost my faith in humanity.
My grandmother had been diagnosed with stage 4 cancer which at that time origin was unknown. However, it was quite imminent that this was terminal and NO ONE had time to prepare for how quickly we would lose our family matriarch, and that was eleven days after I turned 15.
The chemo had been too much for her and she ended up with a nosocomial infection which made her go septic. She died on May 14, 1992
When I say that this was painful, I am not sure that I am emphasizing the pain I felt adequately enough. I’m also not quite sure that’s even possible, quite honestly. The only person who listened to me talk about how weird I was and managed to make me feel ok about it was gone. We barely had 3 months from her diagnosis until she died.
My uncles and my father had resented me for many years because the last day she ever spoke was May 4th, and she had been upset that she forgot my birthday which had been the day before. Honestly, the LAST thing I wanted was a gift. I wanted her to be ok. What I wished for was that she would survive.
I remember my Uncle telling me how angry he was and what a “spoiled brat” I was. I was shocked. I was furious. I couldn’t even speak. I just sat there in tears. Even my father didn’t speak to me. I was 15 years old and the weight of her dying was placed upon my shoulders. The guilt was insurmountable. This was the beginning of a downward spiral.
I had been both anorexic and bulimic for the past two years trying to make my mother proud of me. I did whatever I could to act just like the pretty girls. I found a person who got friends and was noticed and that was the mask I wore for a bit. I went from a nobody to an artificial somebody in High School. I was an athlete and I was in the theater, choir and the orchestra. However, I was bored to death in every class I had. There wasn’t anything challenging me.
After I graduated, I tried drugs. I drank alcohol. I tried to buy friendships and studied people so I could behave just like them and wouldn’t stand out. I became someone I didn’t recognize in the mirror.
I had a Dr who had been working with me from the age of 13. He diagnosed me with Manic depression and ADHD. At 15, ED’s and body Dysphoria were added. At 16, OCD followed. It wasn’t until I was 23 that thankfully I was diagnosed with PTSD which later became C-PTSD. But finally, I pulled myself through. Thankfully.
I walked away from a lot. But in the end, I gained myself. I was finally someone I knew. I was me.
But how the hell did they NOT know that I was autistic until I was 31?! I never got the answer. (And yes, about 2 years ago, my father apologized for how he acted while his mother, my grandma Rose, was dying. He didn’t even remember at first)
My Uncles never apologized. Actually, they’re too busy thinking I’m a loser because it took me damn near forever to “get my shit together.” My Uncle Mark has two daughters, both of whom don’t think I am good enough to associate with. I think I am finally at peace with this.
I also took my brother in 11 years ago so my Dad could move in with my now stepmom and get married. He’s done so much for my brother and I that it was finally my turn. My son is also autistic. He’ll be 18 this year and I am proud being a caregiver to them both. They have complex needs and I’m not able to work anymore.
I had been a Nurse before. Yes, a short-lived career but at least I had made it. If you’d seen that I was up against a system trying to fail me for being neurodivergent and for being disabled, then you’d see exactly why I’m so proud that I finished.
I guess the cards had been stacked against women like me for decades. But we’re breaking free and some are seeking diagnosis like I did. Being validated gave me a feeling of self-efficacy and I was able to answer some of my own questions about past behaviors and such. At first, my father cautioned me about sharing this information.
I can see why…I mean, I’ve had my fair share of being underestimated and was wrongfully failed by instructors because I “came up with the answers a bit differently.” But I can’t “prove” it. That’s why these nursing instructors got away with it. I wasn’t young and cute and I didn’t kiss their ass. They didn’t like ANYONE that didn’t fit THEIR definition of the “perfect” nurse, and here I was thinking I just needed to be skilled, knowledgeable, and proficient.
I’ll probably NEVER know for certain just WHY no one thought to say, “Hey, maybe she’s autistic too! Maybe it’s not just her brother. Maybe they both are!” But it’s ok. It really is.
It’s coming up on 29 years since I lost my grandma Rose. Not a day goes by that she doesn’t cross my mind. I miss her very much. I probably always will. I’m also pretty sure that is why my Dads side of the family just drifted apart. We lost our matriarch. She was what kept us cohesive.
It’s a shame because I love my son but he’s never acknowledged by the extended family. Grandma would have loved him, she would have had us over for every single holiday. Two years ago, when I visited her headstone, I left a picture of him. My husband and I went again in October of 2020. His picture is still there.
