Saturday, March 26, 2016

Delayed Diagnosis

     I was diagnosed with Asperger syndrome when I was 19 years old. When I tell people this, most of the time, their question is, "Why did it take so long for you to get diagnosed?" I have several theories to answer that question, and I actually think it was a combination of things. Today's post will talk about those factors.
     First of all, people with Asperger's are usually diagnosed later in life. Because we are on the higher end of the spectrum, our characteristics are less severe and, therefore, less noticeable. My parents and teachers definitely noticed I was different, but they didn't know it was because of Autism. I was the one who learned about Autism from working with young children, and I noticed similarities in myself and them.
     Second, one characteristic of Asperger syndrome is average to above average intelligence. Most of the time, a child is recognized as having a condition because they are having trouble in school. However, I always had good grades and never really had problems with school. Obviously, being on the spectrum, I had social and emotional problems, but they were thought of as "quirks" or "just who I was". I did get in trouble quite a bit because some of my teachers didn't understand me and how or why I did certain things. Eventually, everyone just came to this understanding of "that's just Kelcy".
     Third, Asperger syndrome, which is my official diagnosis, is a relatively new diagnosis and now an obsolete one. Hans Asperger first described Asperger syndrome in 1944; however, it wasn't an official diagnosis until 1994 when I was already 4 years old. Now, I was diagnosed in 2009. As of 2013, they changed the diagnosis and the criteria. It's now just Autism Spectrum Disorder, and there is a range from mild to severe. Asperger syndrome doesn't exist as a diagnosis anymore.
     Fourth, I am a girl. Autism presents more often in boys. On top of that, it is recognized less often in girls because people put more expectations on girls to fit in socially and have better social skills. Girls are expected to know how to talk about their feelings and make other people feel better. They are expected to be the nurtures and social butterflies. They are expected to go into professions that involve people skills and dealing with other people. I understand that is slowly changing, but it was that way for a long time. Autism is still less recognized in girls than boys.
     Finally, my mom pointed out the other day that I grew up in a small town with a tight-knit community. Everyone knew and looked out for each other. I was pretty well protected and sheltered from many things in our little community. We pretty much had our routines, there were no strangers to me, everything was familiar. It would explain why the characteristics of an ASD would be less noticeable until I was older.....like when I moved off to college. Even though I was only 30 minutes away from home, I left that familiarity. I left everyone I knew, the routines, the protection of the community I had known for almost 18 years. It's when my ASD characteristics became so much more pronounced, interfered with my life, and I sought a diagnosis.
     I've been asked a couple of times if I was mad or upset I wasn't diagnosed earlier. That maybe I could've gotten services or at least known. No, I'm not mad or upset. Also, I don't blame anyone. For the most part, I'm glad I wasn't diagnosed until later in life. I wouldn't have understood it as a child anyway. Also, back when I was in school, I feel like the popular thing to do was to stick a label on you and put you on medication. Well I didn't need medication....or a label. Plus, the "services" I would've had at my disposal were limited and probably wouldn't have helped anyway.
     I'm glad because my parents raised me believing I was like everyone else. They had high expectations for me and always pushed me to do my best in everything I did. I was expected to have social etiquette and manners.They understood I did things differently, and that was ok. Growing up, I knew there was something different about me; though, I didn't know what it was. But because of the way my parents and family treated me, I knew it didn't matter. I was no less than anyone else.
   

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