0 In Autism

Autism After 18: My Late Diagnosis Story

Something was always different about me. I knew it. My parents knew it. All our friends and family knew it. But until I was 1 week shy of my 18th birthday in November 2012, none of us knew why.

Early Signs

I was born socially awkward and shy.  I’ve always been reserved for the most part, though I’m quite the talker under the right circumstances and have always been that way. As I kid, I had a lot of separation anxiety. I would absolutely flip out, crying and grabbing onto my mom for dear life when my babysitter (who I adored then and still do) would come over to watch me so my parents could go out. I’ve always hated “large” groups of people.

For me, a large group could be as few as 5 or as many as 30+ people. I’ve never lived a day without anxiety. I’ve been a fidgeter for as long as I can remember. I constantly play with little toys or with my hands and bounce my legs, sometime violently so. I bit my nails up until the middle of my Freshman year of high school and I bite the skin on my lips to this day.

Behaviors like these, although sometimes more subtle than others, were signs of Autism that no one ever really picked up on until later.

It Took A Hunch

In the fall of my senior year of high school, I needed to have my testing and evaluations re-done in regards to my learning differences and psychiatric illnesses. I wouldn’t be able to get academic accommodations in college if I didn’t have the hours and hours of testing re-done for the 4th+ time in 9 years. My mom, however, had 1 stipulation: whoever administered the testing this time had to be qualified and willing to assess me for Autism. By this time in my life, my mom had done a lot of research and had a hunch…a strong hunch. So that’s exactly what happened.

Testing

One day in the fall of 2012, I went through 8 hours of testing and interviews. My parents were also interviewed. A couple of my high school teachers filled out evaluations too. As my parents remember clearly, I didn’t take their being interviewed well. As I waited for a long while in the waiting room, bored to tears, I literally threw a screaming fit. I was almost 18 years old by this time, mind you. But in my defense, this was on a school day. I had no one to text, no wifi, and no food. These are situations you do not put an Autistic person in…………

Results

Anyway, after 8 hours of testing with an hour lunch break in the middle, I was finally allowed to go home and back to regular life. The wait for all the results of the tests that had been administered to me would be 2 weeks. 2 weeks of nerves and of anticipation.

When results day…err…evening….finally came, my parents and I all went back to the diagnostician’s office. Because I was still 17 (for merely another 7 days…literally) she took my parents back and talked to them first. Again, I did NOT handle that well. They’re MY results. Hello!?! But as anyone who’s been through medical crud as a child, adolescent, or general “underage-er” knows, this is how professionals run things when you’re younger than age 18… -_-

When it was finally my turn to speak with the diagnostician lady, she had me sit down at a table sized for toddlers. Why I couldn’t sit by her desk like during the testing, I’m not sure. But when she finally started talking, I took the words right out of her mouth. I literally told her my diagnosis before she told me. “Autism”. At the time, (before the DSM 5 was released a few months later), it was “Asperger’s Syndrome”. As she said (her words, not mine) “high functioning of the high functioning” in terms of people on the Autism spectrum.

Quick Disclaimer

Now, Autism is a spectrum and even us “high functioning” folks with Autism have some areas where we’re definitely “high functioning” and some areas where we’re not so high-functioning. I’m “high functioning” in terms of my speech, vocabulary, and (generally) my motor skills. I also can easily appear “high functioning” in social situations 1-on-1 or in a small group (usually about 3 people including myself). I’m much “lower functioning” quote-unquote when it comes to emotional regulation, social functioning, stress and anxiety management, etc.

One of my favorite Autism-related quotes goes like this:

“When you’re high-functioning, they don’t see your deficits. When you’re low-functioning, they don’t see your strengths.” -Unknown.

Grieving

I personally grieved my new autism diagnosis for at least a good 3 years or so. Sure, I’d talk about it with others just fine. But I didn’t truly accept it and all that it meant for me for a good few years. It wasn’t exactly the 18th birthday present I had asked for. The diagnosis didn’t change who I was. It changed my understanding of who I was. All of a sudden, I saw that there was a reason I’d been bullied, left-out, and mistreated by others my whole life. I saw that I’d probably continue to experience these traumas in some form for fashion for the rest of my life.

When you’re different, many people treat you as being different, even if they don’t know why you’re different. I’ve been treated as less-than my whole life by far too many people, especially peers. They didn’t know I was Autistic. They certainly didn’t know before November 11, 2012, and most never knew after that time either. But far too many people can tell that something is different about me and they treat me as such. It’s sad and it’s wrong, but it’s true. It’s my reality and it likely always will be to some extent.

However, I’m fortunate to have found some incredible friends who treat me as equals. They don’t make fun of me for my differences and idiosyncrasies. Now that my family (both immediate and extended) knows about my Autism, they too have gotten much, much better overall about how they interact with me.

Now

It’s taken a long time, but between others’ understanding and my maturing, things are finally starting to get better. I have a small but solid group of close friends who mean everything to me. My family has settled nicely into our new normal, both since my diagnosis, and most recently, since my sister went off to college. I’m fundraising for a service dog to help with some of the difficulties that I still have (check out www.hartleyandhollyn.com to learn more)! It’s been a long, long process, but the tide finally seems to be turning a little bit.

You Might Also Like