I don’t know what your reaction is to reading this title, but I’ve heard many reactions as I’ve started to share this diagnosis with people in person. And I can’t blame you if you have disbelief about it. When some friends of ours told my husband and me that their daughter was diagnosed with autism many years ago, I said, “No she’s not!” pretty indignantly. I had no idea what autism looked like back then. I felt horrible at the time for reacting that way, and I’m embarrassed to admit it, but now it helps me to have patience for others who will react to my news in the same way.

The funny thing is that people who know me pretty well, and know a little bit about autism have reacted positively, even connecting some of my behaviors to the diagnosis, and I can see a light bulb go off above their heads as they connect the dots.

Just yesterday I told my friend the news as we were driving to a speaking event, and she said, “Of course you’re autistic. That makes so much sense. That’s why you’re so driven and you never give up [on our non-profit work].” Her husband is autistic and was also diagnosed in adulthood, so she knows more about it than most people.

My family, however, since they didn’t know much about what it meant, didn’t really think anything of it, and they didn’t seem to me to have any compassion for my revelation. It felt like I told them I had a cold, like it was something I would quickly recover from. I was hurt at first, because I was so relieved that there was actually a reason for all of my quirks and struggles. And I wanted them to learn all about it so they would understand me and know me better.

But as I learned more and more about autism and how to communicate exactly what it meant to my family, how it related to me and my behaviors, especially the negative ones, they slowly started to realize the hardships of it and then started to have more empathy and patience for me in these areas. Oh what a relief that day was.

Because it’s been so difficult for me to learn how to articulate my specific autisms, as I call them, it drove me to do more research, which has been a blessing. And now that I’m finally figuring out how to explain what this all means for me, as well as for others who’ve been diagnosed with autism in adulthood, I’m excited to finally start talking about it.

The first thing I want to explain is the title of this series, which is also the title of my podcast, and is also the title of my first memoir that I’m writing. I’m a very vocal person now, but I used to be a quiet mouse in the corner, barely speaking, but ever watching the people in the room and listening in on as many conversations as I could, studying people, their body language, their mannerisms.

At first I was so fascinated by all of the different facial expressions and vocalizations people would make. Sometimes I was so distracted by this that I wasn’t even following the words that were being said. And then if someone directed a comment or question my way, I would be lost in my study of their face. Oops. Hahehaa, ummm, I had nothing. I might nod my head, or cough, or look away, because I was lost.

And eventually people would stop including me in the conversation, and I would just automatically station myself on the outside of the group of people, in a corner somewhere, or finding something to do to look busy. If I was doing something and not looking at peoples’ faces, I could pay attention to the conversation better, and actually have a little something to contribute, if anyone would ever ask me. I really didn’t mind if they didn’t ask though, as it was more comfortable for me to just respond in my head anyway.

Somewhere along the way I learned that looking someone in the eye when you’re talking to them was very important. And it was stressed so strongly that I thought, well I better start looking people in the eye. Wow, did this become a hypervigilant, intense and awkward period of growth for me. It was not a natural practice for me, so I didn’t realize that the natural way was to look someone in the eye for a moment or two, then look away, then look back, and so on as the conversation went on.

The way that I interpreted this important social mannerism was that I must look someone directly in the eyes and never look away the entire time we are talking. So I started to do just that. I would stare directly into someone’s eyes, and it was so intense for me that I couldn’t focus on what they were saying because I could see the veins in their eyes and the different shades of color in the iris of their eyes, and the thickness of their eyelashes, and the details of their eyebrows, plucked, un-plucked, long and overgrown, overplucked, etc. There’s so many details around the eyes, and I was so distracted.

And all the while, it was creepy and intense for the other person. I’ve been told that I make people feel as if I’m looking into the depths of their souls with my stare. When really, when I first started to learn this eye contact skill, I was actually studying their facial features intently. I started to get better at it though, not in the sense of reducing the intensity of my stare, but in the sense of being able to listen to the conversation and start to respond in short sentences as I studied their eyes. It’s taken me many years to learn the art of this social skill, and realize it’s ok to look away for a moment and then look back. It’s not crime, it won’t hurt their feelings, and it will actually relieve them a bit to be free of my intense stare for a moment.

Also, when I learned that the eyes look in certain directions in order for the brain to access and remember data and facts or memories, I realized that when I’m staring at someone so intently, I’m not allowing my eyes to move around and access those parts of my brain to receive data. And then I made the most amazing connection. Not only is it a relief for the other person to be free of my stare, I will be able to use my brain more effectively, process the conversation more quickly, process my response, and actually be able to deliver that thought, out loud, to the other person, in a quick enough flow that it will feel almost normal.

Once I finally had this revelation and started to put it into practice and grow in my conversational skills, I was able to be more deliberate in my ability to make friends and actually grow in relationships and, oh so importantly, ask for help. These were huge milestones, and I will talk more in depth about them in future blogs and podcasts.

But for now, I want to skip to the moment when I said to myself, “I should say that out loud,” to a friend I was talking to at the time. I had asked a woman in my church who spoke on several occasions at some different church functions, mom’s groups and women’s groups, if she would be willing to mentor me because I wanted to learn how to speak like her, in public, for an audience, making people laugh, making connections, and helping people. Thankfully, she agreed.

So we met twice a month and started to first just get to know each other better. As I listened to her share some of her life story I was thinking in my head, as I so often do, wow, she has gone through a lot, and she’s so strong, and so talented, and I’m blessed to be her friend, and I really like this woman.

And then suddenly I had another thought, that had never occurred to me before, I should say that out loud. She would probably really like to hear that. It would be encouraging for her to hear this. Yes, I’m going to say this out loud. And then I did. I said all that out loud. And she was very pleased to receive this feedback from me. Oh my goodness, I was making a friend. I was bonding for real, for the first time, I was learning to be reciprocal in a relationship.

And it felt so good, that I started to do it more often. I started to slowly come out of my shell. I would realize more and more that I was thinking a thought that I should actually say out loud, in the moment. That there was no time to process the conversation, analyze my thought to be sure I was accurate or to be sure the other person would not disagree with me, or become angry at me, oh the anxiety of these thoughts. (I had to take a deep breath and let it out as I typed this, as it raises my anxiety just to remember how this used to feel.)

But I realized that if I was going to be in relationship with people I had to take risks. I had to risk saying the things that were in my head out loud, even if they didn’t like what I had to say. Even if it wasn’t a compliment, even if I had a different perspective. But first, I practiced on the happy easy stuff. Baby steps.

It freaked people out at first. Most people thought I was so quiet and shy that I would never talk to them. And then when I did, they almost physically jumped back. Their eyes got big. They responded verbally with things like, “Wow, Donna, I’ve never heard you be so vocal before,” or, “wow, you should talk more often, that was awesome,” or, “why don’t you talk more often, I’ve never thought of that perspective before?” One friend said, “Donna, you are a stealth. You sit there so quietly, just listening, listening, flying under the radar, and then you swoop in and say the most amazing things. But they’re just short tidbits. I can tell you have so much more say. Please keep talking. It’s so helpful to people.”

So I have. I’ve been saying more and more over the years, and now, in certain circles, I talk a lot. But in other circles I’m still the quiet shy mouse. I have to feel safe before I will open up and speak. In new environments and new groups of people, I revert back to my old habits of reading the room, studying people and conversations, in order to determine if my internal thoughts are safe to say out loud. In today’s culture, this practice is not such a bad thing, in a way.

Unless the topic is one that is so hush hush or taboo or simply unknown or misunderstood, one that most people never talk about it, and I happen to know a thing of two about it, I feel more compelled to open up. Especially when I know that there’s a large group of people struggling with it in silence, like I used to, that unless I speak, even if I’ve terrified, even if I don’t know if it’s safe enough to say what’s on my mind, I will pray, ask for God’s protection and equipping, and take a step of faith, and speak.

That’s what I’m doing with this blog and especially with this particular series, and with the accompanying podcast and my book. That’s what I will continue to do with each additional post and piece of this autism puzzle that is filling so many missing pieces of my story.

Why did it take so long for me to get a diagnosis? Well, that will be the topic of my next post.