Thursday, October 1, 2015

Why I Decided to "Come Out" of the Autism Closet


I've always been autistic, but I haven't always known it. I've known that I was different from other people, but that difference didn't have a name that I was aware of. It was just the way I was. Some of the ways that I was different were things that were pretty cool. Like the way I could easily remember and reproduce much of what I'd seen or heard; the way I could figure things out that stumped other people; how deeply I felt about things; my naturally authentic nature. 

Other things, though, seemed more challenging for me than other people, like socializing, making myself understood, unpleasant noises and sounds, and dealing with sudden changes. I was a living contradiction: I was reading on a college level in early elementary school but couldn't tie my own shoelaces; I could endure intense pain but the sensation of a tag from a shirt against the back of my neck or water inside my ears generating endless tears; I could converse easily with adults but struggled to make sense of my peers' chatter. And even when comfortable, sometimes I couldn't speak at all, because the words wouldn't come out right or were too hard to find - and I needed my pen and paper to speak for me. Etc, etc. My communication, socialization, sensory experiences, and speed/manner of processing and responding to everything were so very different than everyone's (except my mom).  

Being the way I was...it was the only way I knew how to be. For the most part I didn't have a problem with myself, though I did wish things that were so easy for other people weren't so hard for me. So I guess I did somewhat have a problem with myself, but only in comparison to other people; not from within. Because of that,  I struggled with accepting myself for years because it seemed that who/what I was must somehow be wrong. Fortunately, eventually I realized I was exactly the person I was supposed to be. Sadly, it took years. But at least it happened. It still didn't have a name, but I didn't know there was a name anyway. 

Speaking of names, until adulthood I had scarcely even heard the name of term "autism." I had little concept what it was. I recall a daytime soap opera I watched as a child that featured a character who had an autistic daughter. In most episodes the daughter was hidden away at some expensive "special school." Shockingly, the girl's mother was embezzling funds - to pay for her daughter's tuition. According to the storyline, she felt that she had no other options. The take away message seemed to be that autism was something rare, debilitating, and tragic - and that those unfortunate enough to be afflicted by such a thing required costly care. Other than that, I had little conscious exposure to known autistics nor information about autism. It just didn't come up. 

Fast forward many years to motherhood, in which I find that I am blessed with the most amazing children on the planet, two of whom happen to be on the autism spectrum. It was through their diagnoses, subsequent research, and thorough self-evaluation that I began to seek answers about my own neurology. Through them, I first suspected and later confirmed that I was autistic too but simply hadn't been aware. It was extremely eye-opening and powerful for me to finally have this insight about myself. Equipped with this new knowledge, everything began make so much sense to me. 

I only wished that I had been able to have this awareness much younger, when I needed it thoroughly. It would have helped me understand how I best operate, learn, handle challenges, socialize, etc. I could have avoided costly mistakes, made different choices, sought strategies to have my needs met in a way that worked for me, and I could have had opportunities to stand up for myself. Armed with this knowledge, I am now able to do those things. But I realized that unfortunately there were many lost opportunities from my past.

I knew I could never get those years back. But now I wanted to try to give others what I hadn't been able to have for myself. 

A chance to know, and accept, thyself. 

I think it's important to point out that I was already a part of the "autism community" as a parent of autistic children; I didn't have to reveal my own diagnosis to others. And in some ways, both because it often seems that the voices of autistic adults are (sadly) perceived as less relevant than the voices of non-autistic parents/caregivers and because individuals like me are often disdained and/or disregarded by some members of the autism community as "not really autistic/not autistic enough/not like my child," it may seem that there was little to "gain" from coming out as autistic. And a lot to lose. But I still wanted to. For nothing had changed - except everything had changed. I was the same person before and after the discovery...except I wasn't.  I was no longer unaware about who I was. All of me. My full, true, perfectly imperfect autistic self. 

I more than wanted to come out; I needed to. I wanted anyone out there who remotely identified with me in any way (age, gender, ethnicity, region, etc) to be encouraged by my existence. To know that they were not alone. I wanted autistic kids (like my own, and others) to know that it's okay to grow up to be an autistic adult - like me. I wanted people to know that though I have very real challenges, being autistic has also afforded me many strengths too. That my (nor your) life is not "destroyed" by autism, but it is very much intertwined with it and all of its elements (positive and negative). I wanted autistic adults who were (like myself) late diagnosed to know that there was a community - the autistic community, filled with people like me who have found one another. I also wanted people from various groups often less represented in autism to hopefully feel a sense of kinship with me. 

Maybe if I could be willing to share about my life others would be willing to live their (autistic) lives. 

So when I came out as autistic, I did it big. That fateful day I participated in a local cross-disability festival that highlighted various films, images, and other content with a focus on disability acceptance. I stood next to a "larger than life" image of myself that was part of a traveling photo exhibit. Next to my image were the following words:

"Morénike is an autistic adult who proudly wears the hats of wife, mother, advocate, and student. She is passionate about social justice, global health, education, adoption, and community empowerment."

I came out as autistic publicly, and I have never regretted beginning to live my authentic life. I am free - to be me. I swung the closet door open that day and stepped out, never to return.

Image of a closet door with light emanating from it. Photo credit: HuffPo