My Personal Autism Discovery Journey –

Today is World Autism Awareness Day and there couldn’t be a better time to share what I’ve been working through over here!

I’ve been waiting for awhile to decide if it was time to share this or to just sit on it for a bit longer. But this morning I woke up and saw what day it was and I knew it was time.

Many of you know that my oldest son has been officially diagnosed with Autism. He was diagnosed last fall. But what you don’t know yet, is that I may also have Autism.

We have been on quite a journey — really since my son was born. I’m a researcher and I like to see all angles of a subject before I form an opinion on something. So on this journey I joined many Facebook support groups, researched article after article about Autism, asked his professional team a million questions, and I knew my son dealt with a lot of what I was finding, but it was all still sort of jumbled to me.

That was until I started reading people’s stories. Stories have always been the easiest way for me to learn. I can read a textbook and remember many of the things in what I read, as well as I photograph the pages in my mind and that’s how I made it through high school/college. But if you ask me what I “learned” about, most of it is gone and I couldn’t tell you. BUT for everything that was made into an example or a story, I can STILL rattle that off. It’s why parables in the Bible make the Bible easier for me to understand. It’s why stories or songs about the Bible make it easier for me to memorize scripture or really get a grasp on it.

That’s when everything started clicking for me. The doctors had been asking me all these things about my son, but I didn’t know what to tell them until I found myself/him in other people’s stories. Then I could go into the appointments armed with knowledge and could say exactly what we were working with.

This is the point when I started to wonder why it was so hard for me to be able to share what was going on. How come I didn’t know things like developmental delays or that he wouldn’t/couldn’t get himself dressed. I just assumed he never wanted to and it was always a fight. I wondered how I missed that he couldn’t do multiple step directions.

Then I started having these flashbacks. I would see myself having a panic attack because someone was trying to give me audible directions to do something and I couldn’t remember anything after the first and second steps. 

I started remembering how hard eye contact has always been for me. It’s intense for me and always has been.

I started remembering all the times I got in fights with friends/family because they changed my plan and I literally didn’t know what to do with the change. It was debilitating.

I thought about all the times I copied people’s social mannerisms and how I never knew the sound of my own laugh. I would hear someone else’s laugh that I liked and I would learn it and take it as my own — until the next one came along. I was mid-late 20’s before I found the sound of my own laugh.

All the times I dressed up like the movie stars in the magazines for school because I thought that was what was popular — and all the times I was the brunt of the joke because of it.

The day I learned about Executive Functioning — how our brain processes things like memory, self-control, time management, and even emotions — I cried. I suddenly understood how/why time management has always been so very, very hard for me. It’s not that I’m incapable of staying on a task or being on time, but I have always said that I “lose time” almost. A great example of this is when I need to get ready to go somewhere and all of a sudden I have been lost in my phone for an hour and now have 15 minutes to get all of us out the door. (And it doesn’t have to be my phone. It could literally be anything I get lost in.) I don’t do this on purpose and many times I don’t even realize I’m doing it. I have learned to set alarms for myself and timers and set a strict schedule so I can continue to function properly and get us all out the door at a relatively good time.

Through all of this discovery process, I have learned that I am most likely Autistic myself. I have had multiple professionals on this journey ask me about it as well as recommend an adult evaluation. I have spoken with a psychologist that has pre-screened me and agreed it was time to pursue an evaluation/diagnosis. At this point after all the research I’ve done and everything I’ve learned over the years with my son and now learning about myself, I don’t believe it’s a matter of “if” I have it — it’s just a matter of having a piece of paper that says it. All the signs are there. And since I started utilizing the same tools they’ve given my son, I have seen an INCREDIBLE improvement in myself. Sometimes it makes me sad that I didn’t have these tools growing up. I do wonder how different my life could have been.

I most definitely do not blame any adults in my life for missing this. Autism wasn’t really a big thing back in the 80’s/early 90’s. Nobody really knew what that was. And because I’m really good at “masking” (learning traits/things to hide what I see as an imperfection or something that doesn’t fit in society) it would have been VERY easy for anyone to miss it — myself included. Though I always knew something was different about me. I knew I didn’t fit anywhere. I studied people and learned their mannerisms and tried to be like them so I wouldn’t stand out so much, but it actually made me stand out even worse. Everyone always says, “Just be yourself Nikki!” But I literally have never known who I am.

Making and keeping friends has never been easy for me. I couldn’t sustain the friendships because over time my “weirdness” started coming out. I couldn’t hide it anymore. And once people realized all my “specifications” and how I needed things a certain way, they almost always had to leave. I get that, by the way. I was pretty toxic because I didn’t understand myself or my design and I wasn’t healthy. I still have many areas of healing, but I know that an evaluation/formal diagnosis is going to be the first step for me. I will begin to get even more tools to help me now, as I learn emotional regulation, how to “regulate” myself in healthy ways, how to “unmask” and really learn who I am — weirdness and all!

I wrestled back and forth with whether to bother with a diagnosis. As an adult there aren’t a ton of services really. And I am certainly not doing it for any financial gain. But what I know this will do is help folks see that I actually do have it and it makes everything I have learned about Autism (in my son and in myself) more “credible” so to speak. I have learned soooo many things over the years, and God has given me so many amazing (and PATIENT!) people throughout my life to teach me the skills that I needed to be as functioning as I am today. And I want to give back. I want to help others.

Some folks throughout my life taught me how to make eye contact. On the job training at call centers taught me how to be comfortable on the telephone (with a script of course) and they also taught me how important my tone of voice was. I learned sales techniques from various jobs (though I still today wrestle with the idea of sales and authenticity, but that’s for another post). I learned time management from pushing myself at various jobs to stay focused. I learned that lists upon lists upon lists (in fun colors!) helped me stay on task and helped me prioritize. 

Even though I didn’t have services growing up, I have been able to see (through my son’s services) all the things/ways the Lord Himself raised me throughout the years to give me what I needed to be a functioning human in society. I am most definitely not perfect. And if you’re reading this and you always thought I thought I was, or you thought I have “RBF” (resting b-face), or you thought I was judging you — now you know that I wasn’t! I am just often lost in my mind trying to process everything in front of me. “What is she saying right now? Why is her face doing that? Is she happy or sad? Is she being sarcastic? I don’t understand sarcasm. Why do people have to be sarcastic? Whoops! I should pay attention here because she’s saying something super important and I want her to know that I love her and she’s a good friend.” THAT’S a typical moment in my head. That’s why I might look glazed over. Haha. THAT’S why I might focus really intentionally/intensely on you — because I am trying to make sure I don’t miss anything you’re saying or any of your social cues. (Like when I talk WAY TOO MUCH and I can see you’re getting super bored and maybe if I talk about this topic for even one more second your head will explode. Haha.)

I know that I don’t have a formal diagnosis yet. But can I just share how incredible it feels to FINALLY get to share this part of me publicly?! To finally admit that there’s something different about me — and it’s worth celebrating!?!?!

Can I tell you how I have learned so much about Autism and the supernatural world? And how some of the torment we have felt actually doesn’t have to be felt/experienced? That God has actually healed SO MUCH of my anxiety/torment?! Or how excited I am to learn that my design has been named by man so we can easily identify and find each other?! I asked the Lord one day when I was praying about all of this why I should bother with a “label” when I already know I am designed like this. And He said, “Because just like Adam gave everything a name so we could easily know what a fish or a bird or a tree is, so your design has a name so that you can find others like you!” And then He went on to share with me that I do not have to accept or take on the disorder portion of it. While I definitely have areas that still need love and healing, disorder is not part of my identity. Just as cancer or diabetes, or any way the body is out of sync with how it was created, is not part of our identity. It might be part of our journey, but it’s not who we are.

Autism is part of who I am because it gives a name to my unique gifts and abilities. It helps me understand others who are designed similarly to me. It helps me “translate” those folks to others with different designs (and vice versa). It gives me a compassion I have never known before — for myself and my family and every person we meet. I don’t mind being on a “Spectrum” because it makes me think of a rainbow and how many colors are within a rainbow. We are ALL unique (Autistic or not) and we all are like colors on a rainbow! These folks just happen to be a similar shade as me. 🙂

I’m excited to have a “first-hand” experience for my son. (And possibly even both sons — as we are waiting for my second son’s evaluation.) What a blessing to be able to understand how he thinks and to have patience to be able to “translate” an experience that he doesn’t understand, in a way that he can understand it. Every day I am so thankful for this “super power”.

I’ll keep you all updated on this journey as I go along! But I wanted to be able to start sharing more of my story through the lens of Autism because I believe there are many of you out there (Autistic or not!) that believe you are “different” and you might even find yourself hating your own design. My heart is to be able to teach you how to heal and step into/embrace your God-given design so you can learn to really, truly love yourself and be all that you were created to be!

We can do that together. <3
~Nikki