Diagnosis Part 1

I was diagnosed with Autism on May 30th, 2018. Typing this out has me in disbelief, has really been 11 months since I’ve been diagnosed? The psychiatrist who diagnosed me was not a specialist in Autism so he wanted the diagnosis confirmed by someone who specialized in Autism. It took us a few weeks but he was finally able to locate someone who tested adults for Autism. August 2nd, 2018 an Autism Spectrum Specialist confirmed I had Autism Spectrum Disorder level 1. ASD level 1 in laymen’s terms is mild autism. DSM-V differentiates the levels of autism by how much support an individual needs. In DSM-V ASD level 1 is described as “requiring support”1 . Whereas level 2 “requires substantial support” and level 3 “requiring very substantial support. If you want to read more about the 3 levels click here. It was a relief to get my diagnosis.

Let me take a step back and share a lifetime of symptoms I had and feelings of being different. One day during a midst of a health crisis, I needed to figure out what was wrong with me. I was in and out the ER and had many doctor appointments and tests done. And I was barely handling it due to my sensory issues. Sensory issues I thought I finally had a handle on. A question that crossed my mind, a few times in the past decade, needed to be answered. Did I have Autism?

***

There are images flashing in the back of my mind. I looked out the attic window and looked across the alley and stared at the neighbors house. If someone let me I could’ve been content staring out the window all day.

My vocabulary was limited for a three year old. I remember looking up the sky while in a grocery parking lot. I was admiring the blue sky and white clouds. And I realized I was thinking in words. I connected sky, blue and clouds together. I was giddy and unsure of how to share my excitement.

I paced and paced around the living room like I usually did. And apparently one day my younger sister decided she had enough. My mother said my sister hit the back of my head with my mother’s empty coffee cup. But that didn’t discourage me from pacing. I did it throughout childhood because it calmed me down. Finally one or maybe both of my parents discouraged me from pacing. I later had to give up bouncing my leg (another way I had calmed myself). By middle school I had so much pent up anxiety and energy it turned inward into self-harm. I cut myself and rubbed my skin off and even banged my head on the walls when I was alone in my room. It’s embarrassing to admit but even in my adult life I’ve been so overwhelmed and had to resist the urge to bang my head on the wall.

In middle school and high school I had plenty of moments of feeling different. And I’m not talking about the typical angst of adolescence when you’re trying to figure out who you are and discovering feelings of attraction. I’m talking about deep shame for not understanding social situations. I tried so hard to appear normal and tried mimicking other girls, reading teen magazines and looking up advice online on how to fit in. To this day I consult online articles for advice on social situations and relationships because I don’t want to appear like a fool. I really wanted to connect with others but my brain wouldn’t let me. I always felt other, an alien and a fraud.

There’s many more symptoms that appeared in my life. And if someone had taken the time to look at the bigger picture maybe someone would have identified me as autistic much sooner. In 2008 I considered briefly the thought of me being autistic when a classmate did a presentation of Asperger’s. She showed a clip and it had a teenage boy and at one point he was overwhelmed due to sensory issues. And I could feel my cheeks getting warm and was terrified that people would recognize my behavior. I made sure not to make eye contact with anyone during class. Surely no one would accuse me of being different, I always kept my feelings stuffed inside and I would only allow my feelings to come out at home. My meltdowns almost always happened at home. And I stuffed that memory in the back of my mind. I didn’t have all the symptoms of Asperger’s and maybe I wasn’t ready to fully explore what made me different.

My boyfriend (now husband) and me in our early twenties.

I was so tired of feeling different. I remember sobbing on the phone with my then boyfriend, now husband, Michael. I said something was wrong with me. Something was wrong with my brain. And Michael assured me nothing was wrong with me that I was just fine as I was. And I can’t remember if this conversation happened before or after I got diagnosed with anxiety and depression. I finally gotten a diagnosis at 20 but something still felt amiss, something was behind my the anxiety and depression. And no matter how much therapy I got there was always something off. Yes I got help and gained tools to manage my depression and anxiety. I couldn’t shake off feelings of shame. I did come across Autism again while in a social work course. The class had attended an Autism workshop presented by researchers affiliated with Kansas University. I seriously contemplated if I matched the symptoms of autism. My conclusion was I possibly had autism but I made it this far in life and was managing my possible autism just fine. Anyways where would a 22 year old go to get diagnosed with Autism? I never told anyone my suspicion that I was autistic. I was fine and had other things to worry about like my problems with my digestive system. I was fine and everything was fine except my physical health. But I was fine. And I didn’t realize it but denying my sensory issues wasn’t helping. And next thing I know I’m 28 and in pain and struggle to express what I’m feeling due to the bright lights in the ER, noise and feeling of needles drawing out my blood.

***

I had been doing research and had even texted my therapist the morning I ended up in the ER again. I was screaming and hysterical by the time the ambulance had arrived at my home. I was possibly passing kidney stones and had pain throughout my abdomen and vaginal pain. And that whole episode was traumatic and the young doctor in the ER that day was panicked when I informed him of how many times I saw doctors that year alone and how I recently had passed kidney stones. The nurse was calm and her demeanor slowly brought me back to the present. I told the nurse that my therapist thought I might have autism. Which wasn’t actually the truth, the truth was that my therapist said my theory of being autistic was possible. But I didn’t have time to explain that part. The nurse talked to me gently and turned down the lights and she made sure I was warm. I told the technician the same thing and she was wonderful and kind during the CT scan. And I knew in that moment I needed to be evaluated for Autism. I couldn’t handle the stress of being seriously ill and it was getting in the way of me clearly communicating with doctors how I felt.

Not long after that ER visit I finally got the answers I needed. I had a bulging disc in my back and inflammation in my lower back. Interstitial Cystitis so severe what was initially thought to be kidney stones turned out to be tissue from my bladder. I had severe pain and tightness in my pelvic floor muscles. And I had Fibromyalgia, a neurological condition that will cause pain in the muscles. And the question I asked my whole life was answered, what’s wrong with me? It turned out nothing was wrong; I am just Autistic.

But my relief of being Autistic was short lived. And what happened next will be continued in part 2 of Diagnosis.

References

  1. Rudy, L. J. (2018, December 18). Making sense of the three levels of Autism. Retrieved from https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233

Published by deannajv

I'm autistic. I'm also married and have a daughter. I graduated with a bachelor's degree in Family Studies and Human Services.

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