What I Wish I Could Tell People About My Experience on the Spectrum

What’s one secret or truth I wish I could tell others about my experience with Asperger’s?

I’m not OK. It’s not that easy. And yes, most of the time I am pretending.

When I received my Asperger’s diagnosis, I waited weeks to tell my family. I was 35 years old and already a parent myself, and I was terrified for them to find out. To this day, my father still does not know.

Mostly I hesitated telling people out of fear they would look at me differently. I was still learning to accept parts of myself, so how could I expect that immediately from anybody else? Another reason was that the reactions I got when I did tell people were less than savory. They didn’t believe me.

I now believe this happened for two reasons. First, all the years my symptoms were dismissed and I was regarded as socially awkward, shy, slow to warm up, rude and sneaky. I had studied the behavior of those around me and learned to adapt, something that seems to be a commonality among females on the spectrum. The second reason I feel people weren’t accepting of my diagnosis is that the general population has a lack of information and understanding about the Asperger’s/autism spectrum diagnosis.

It came as a surprise to my close family and friends, and they had a hard time understanding how this could be. They felt I looked fine on the outside and was exaggerating or making excuses for my behavior.

The truth is, nobody knows what it’s like inside my brain. They don’t know just how hard I am on myself on the inside for everything about me that is different on the outside.

I have to work double time to make it through parent/teacher meetings, soccer games on the sidelines, dates, family gatherings and sometimes even extended periods of time with no break from my kids. The hours that follow are usually spent trying to recover. It can take days for me to get back to myself after a social event or interaction, whether successful or unsuccessful. I can spend hours crying, replaying every minute over and over in my head thinking of all the ways I could have done it better, differently or how I could have fixed it. I stare out my window trying to remind myself there is more to my existence than confusion.

Something so simple for one person to me can be completely overwhelming. I went to college and got a degree, but I cant find a job for the life of me. It’s not because I don’t want to succeed — it’s because I cant find a place where I don’t have to be afraid just to be me. I have a hard time trying to rationalize going out and pretending I’m something I’m not in order for the world to accept me. Just to make a penny.

Sometimes my Asperger’s makes me look quiet.

Sometimes my Asperger’s makes me look rude.

Sometimes my Asperger’s makes me look antisocial.

I can assure you on the inside, I am none of those.

There is so much I have yet to to make sense of. Sometimes I have to go to my kids for advice because there are some things they’re just better at in life.

I have chosen not to tell my dad about my diagnosis because I don’t want him to lose faith in me. Sometimes I feel he may be the only one left who still believes in me. I wish I could tell him that just because I’m not like his friends’ kids with their successful marriages, careers and houses, I’m doing the best I know how to in order to be successful. I am surviving.

I wish I could tell people that sometimes surviving itself is a daunting task. I wish my dad knew that. I wish I could tell others how although Asperger’s can create boundaries for me, I am learning to navigate around them in my own way in order to be happy.

It may not be their interpretation of what the perfect life looks like, but it’s mine — and I think I will do just fine.

Follow this journey on Awkward Is Awesome. A View From the Spectrum.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.