Trigger Warning: This story contains mention of eating disorders that may be triggering to some.
“I knew I was different as a kid. I could feel it plastered across my face, strung in my words, caught in my voice. Different.
I was a good toddler. I played by myself, I was happy, and I reached almost all of my milestones early. I wasn’t picky with my food, and I talked and talked and talked. I did all sorts of classes at the local college (Wright College!), such as ballet and tap dancing and swimming and gymnastics and tumbling. I’d say I was on the way to being a fairly well-rounded kid.
Despite all the normal signs of being a child, I had severe separation anxiety and sensory sensitivity. I couldn’t sit through a single class without anxiety and tears, and I needed my parents to be around me constantly. I couldn’t handle loud noises and crowds and bright lights and too many sensations at once without having a meltdown or needing to leave. It was almost like I was leading a double life- because I was fearless and daunting and I’ve loved experiencing the world since I can remember, but I was also plagued with anxiety and fear of the world I was in. I was scared of being alone, scared of sounds, scared of things that gave me big feelings. And as I grew older, this anxiety grew with me.
In the first grade, my dad had to sit in class with me, and in the next few years after, I was becoming more independent. I grew out of separation anxiety by the time I was 9, but I developed PTSD because of so much change and trauma with my family. I’d been moving to and from Turkey and back to the US since I was 5, and I was having nightmares because the situation that traumatized me followed me for ages after the fact.
I struggled with school avoidance through 4th and 5th grade and all through middle school. As I reached my first year of being a teenager, I became depressed. I felt nothing and everything at once. The world was too loud and bright for me, yet I succumbed to my own darkness and silence. I fell into unhealthy habits that led me to my first inpatient mental hospitalization. I was 14. I’d started on the path of SSRIs, SNRIs, mood stabilizers, and antipsychotics. I’d tried medication after medication, psychiatrist after psychiatrist. And they failed me.
I’ve had a psychiatrist literally tell me they can’t help me. I was not yet aware the reason I was so hard to treat was I have ASD (autism spectrum disorder) and they were focusing on everything around that. I had my ups and downs and a couple more hospital visits and outpatient programs after that. And finally, at 16, I had a long list of diagnoses going: Generalized Anxiety Disorder (GAD), Major Depressive Disorder, Obsessive-Compulsive Disorder, Anorexia Nervosa, Avoidant Restrictive Food Intake Disorder (ARFID), and Somatic Symptom Disorder.
As if that wasn’t enough, quarantine hit due to COVID-19 and I discovered I may be autistic. I developed tics in June of 2020 and I was freaked out, to say the least. I was 100% sure I had a brain tumor or some progressive disease and I was dying. They started out of nowhere—blinking rapidly one night after a meltdown. I started jerking my head and losing control over my body. I was out of control and it felt like it was killing me.
They diagnosed me with dystonia in the emergency room and referred me to a neurologist. They were convinced I’d been popping my grandmother’s prescription medications and was having a reaction of some sort. They completely ignored the fact I was experiencing obvious signs of tics, not dystonic movements (which are slow and repetitive), as I was mouthing the word ‘one,’ blinking, and scrunching up my face.
The visit to the ER did nothing but mess with my head, and my tics did not improve. They would lessen when I was calm or focused, and they became obvious when I was having a bigger feeling. I have had many instances of hyperfocus and hyperfixating growing up, and so that sent me on my way: I was going to do my research. I spent hours and hours every day learning about the types of movement disorders and came to find what I was experiencing were tics. I had to rely on my neurologist to rule out any diseases that would have caused the sudden onset of tics, such as Parkinson’s and Huntington’s and autoimmune illnesses, and he did. I did not have a brain tumor or any illness—I just had a tic disorder. Simple. Would it turn into Tourette’s after a year? Maybe.
This didn’t satisfy me, though. I needed to know why I had a tic disorder. I researched and researched and developed theory after theory. Conversion disorder, no. Anxiety, couldn’t be. I had therapists telling me I was just making myself sick by being so anxious. They said this to me as my ‘anxious tics’ quickly became coprolalia/copraxia and echolalia. I was hitting myself and swearing and shouting. This couldn’t be an anxious tic, and it wasn’t. My tics lasted, and they would evolve and go away, they waxed and waned, and became Tourette’s. I had a neurological disorder, and I was neurodiverse.
Before I was diagnosed, I’d told my primary care physician I wanted a psychological test to be done to rule out causes of my tics. My research told me tics are more common in individuals with ADHD and Autism. After I brought this up, he said, ‘I’m definitely seeing a spectrum disorder and it would be worth it to get tested.’ He was the first, besides my mother, to acknowledge there was something more going on. This was just recently after I’d been informed my mom had been trying to get me tested since I was a kid!
I got a battery of tests done on my intelligence and focus and history. They tested for everything BUT ADHD and Autism. I was beyond frustrated because I singled out characteristics and traits right out of the DSM5 section for ASD and the psychologist refused to test for it. My focus came out significantly low and she refused to test for ADHD. She simply believed I’d asked for those tests because I was afraid, and so she diagnosed Somatic Symptom disorder instead.
It was my primary care physician who diagnosed me with Autism. He looked at me and went, ‘I’m just gonna put that in now,’ after I’d dumped my folder of research in his hands. It was done. It was validating. And right after, I was as calm and serene as never before. Someone saw me for me.
Of course, I remained uncertain and invalidated myself constantly, that’s just how it is when you find out you’re autistic at 16. I had people telling me, ‘Well, you may just be like that. It doesn’t mean you have autism because you’ve done so much.’ This didn’t make sense to me because many autistic individuals are incredibly successful. Autism isn’t just a little boy who likes trains. So many of us like things such as trains, yes, but autism is a spectrum and many forget it’s not a one size fits all diagnosis.
I don’t fit many autism stereotypes myself, and this is because the media does a bad job of portraying what it really looks like. For me, it’s a lot of lack of understanding of social concepts. I have difficulty processing. I don’t love eye contact or speaking with a lot of inflection, but I know others appreciate when I can reciprocate those things so I really try my best. It’s a daily discovery about myself, finding things I like and things I don’t. I experience the world differently every day.
I struggle with balancing being alone and not being able to be alone, so one of my best mates is my dog, Peanut, and my grandparent’s dog, Ivy. We’ve had them both since they were puppies, 2 months old! Peanut is 3 years old, a Beagle mix, and the happiest soul. Ivy is almost 1, a Great Dane mix, and the wildest girl you’ll ever meet. They know when I’m stressing or panicking- always. Both of them are good at coming to me during meltdowns or shutdowns.
Ivy is my grandpa’s diabetic service dog in training, and Peanut is my psychiatric service dog. Some of his tasks include deep pressure, where he will sit on my lap or lay on my chest. He is also good with tactile stimulation, licking my face when I’m crying. He serves as a good, strong block during meltdowns so I am not harmed by anything around. He is my companion when we go out and makes me feel so safe. I have always connected with animals, they always understand me best.
It gives me the best feeling to share with the world what a real person goes through. We only see so much through the media. We’re all so complex with so many feelings and our brains are so vastly different. I think it’s amazing. I hope others will see me and see real and see it’s okay to be yourself. I know it is not easy to live in a world that was not made for you because we experience life with the volume and brightness slides are all the way up.
But I really wouldn’t have it any other way. There are days I wished I was normal. That I could speak like others and feel like others and be around others and actually be there until I remember I can’t live my life and love myself if I keep wishing to be someone I’m not.
We are disabled. And disabled is not a bad word. It’s a powerful word—to acknowledge that there are things you cannot do like others. To acknowledge that you are disabled, not ‘differently-abled,’ not ‘special.’ That you have needs like every person in the world you simply access differently, and that does not make you less.
We have so many strengths we can be focusing on instead of only seeing the bad! Because of my autism, I am loyal and intellectual and devoted. I lack functional skills and make up for them in my ability to care for others. I lack typical communication skills and make up for those in my music. My Tourette’s makes me funny. My anxiety makes me care, and my depression makes me grateful and able to recognize beauty in everything. There is no part of me or my brain missing because I am whole and real as ever.”
This story was submitted to Love What Matters by Juniper Gudukoglu from Oswego, IL. You can follow their journey on Instagram here and here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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