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Why My Autism Went Undiagnosed

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From the moment I was born my parents could tell I was different. The way I behaved compared to my older brother (who is seven years older than me) alarmed not only them, but my other family members as well. I would do odd things such as only eating the tip off Hershey’s kisses and then line them up in front of the TV set and eat them one by one. I would do the same with toy cars my grandparents got me. I would bring one toy downstairs at home, play with it for a second and then go upstairs and grab another toy, to the point all my toys were downstairs. I would also play with the dog leash when I was an infant and twirl beads in my hands.

As a baby I was always crying and screaming when I wasn’t held, to the point where my father would come home and could hear me outside the house. I didn’t learn to sleep through the night correctly until 4 and a half years old, and only after my parents had me get a sleep study and the doctor recommended a “grab box” of toys. I would get a new toy only after I slept through the night and didn’t bug my parents.

It wasn’t just these types of things. I was heavily delayed in some areas. I didn’t learn to speak until I was 2 and even then it was slurred. So I got a speech therapist. I also concerned my parents when I wouldn’t respond to them talking to me, so I got my hearing tested. When that didn’t come up with anything significant my parents continued to search. At age 3 I began taking medications in liquid form until I learned to take them in pill form. By the time I was in elementary school I had two firm diagnoses: ADHD and OCD. And soon after I slowly became aware I was different. By as early as kindergarten, I was slowly becoming an outcast and wondering why my classmates didn’t like me.

So why did it take so long for me to get the autism diagnosis? I find the answer to be quite simple: girls often aren’t interested in as “different” things as boys are. Growing up I had one constant special interest, which was (and still is) my main area of interest. When I was in elementary school I was into Disney and Disney Channel. When I was in middle school however, I strayed off into 1950s-1980s music — which I fully believe might have helped lead to my autism (or at the time Asperger’s) diagnosis at age 11. If it wasn’t for my unusual interests then, I do wonder if I would be considered autistic at all today.

My point is, unless you are into highly different things, autism can be hard to diagnose unless it is tested early on. And early help with it is key. I was very privileged in that I got speech and occupational therapy from the time I was in pre-K in a special education class to fifth grade.

I fully believe this idea of autistic people having to like certain things considered “different” should change, and I hope it does soon.

Originally published: April 18, 2018
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