This is by far the most vulnerable I've ever been on the internet. This is as real as it gets. Part of me doesn't want to share because I'm worried what people might think. Part of me doesn't want to share because- what if I'm wrong. Part of me doesn't want to share because this is a story that's just getting started and things always come into greater focus the closer you get. But most of me knows that I'm not the only one going through something like this and that being vulnerable and transparent may help shed some light on things that otherwise remain a mystery. My goal of promoting inclusion, neurodiversity, and disability rights includes demystifying the things that are often "foreign" to neurotypical people, and that starts with me.
On June 14, 2018, I put my name on a wait list to be evaluated for autism. I've been thinking about the idea that I might be on the spectrum for a little over a year, but it wasn't until recently that I really started researching and even more recent that I started talking about it with the people closest to me. The wait list for a diagnostic evaluation (somewhere here in town) is two to three years long. You read that right. Two to three years. Very few people will diagnose adults and even fewer are really experienced at it. Since I suspect I may fall in the category of what used to be known as Asperger's (now just part of the autism spectrum) and since in many ways I am "functioning as expected", I think it's important for me to wait and see somebody who has immense experience in the field. A diagnosis won't change who I am, but I hope going through the process will help me better understand myself and my experiences and perhaps help me to have a little grace for myself when I feel like I've pushed my limits too far. And if at the end of this journey a professional does not think I'm on the spectrum, well...I will have done some good hard work at figuring out some of my "stuff" and that's work worth doing.
The first time I remember thinking that I wasn't like other people was in my very early teens. I couldn't put my finger on it, but I sort of felt like I was from another planet. I was thinking about things that my peers seemed unconcerned with and felt more comfortable with my journal and deep thoughts than other kids. The people I connected with seemed to be significantly older than me and it wasn't uncommon to find me in a room full of adults rather than peers. I tried on a lot of different identities throughout my teen years, trying to find something that would stick. I went through a goth/punk phase, I had every shade of hair imaginable, and I built connections with people from a wide range of social groups thinking that eventually I'd "find my place". I was also severely depressed, anxious, and prone to self-harm. But I never really did find my place. I graduated high school a year early and ran as far away from my hometown as I could. I thought maybe my place was just somewhere else. But the pressure of college and being across the country, trying to figure out who I was in this new place led to a full blown eating disorder and a near mental break down. I would call home to my mom and boyfriend (now husband) hysterically crying, telling them that I thought something was wrong with me. I had a hard time verbalizing exactly how I was feeling, I just knew it was too much, that I couldn't do it anymore, and that nobody around me seemed to be struggling this way. Why couldn't I just be more like them? I moved back home after two hard semesters, assuming maybe it was just a brutal case of homesickness.
Being at home, in a familiar environment with the support of my parents and my boyfriend, I seemed to find my solid ground again. I got married, I got promoted at work, I graduated from college, I bought my first house. Life was good. It was good until I decided to move away to go to graduate school and become a foster parent and then it wasn't so good anymore. The pressure of graduate school, coupled with becoming a parent, in addition to trying to start a new life in a new city was all too much. Again I found myself in hysterics, calling home and saying "I can't do this. I don't know what's wrong with me". My peers seemed to be thriving, I was making excellent grades, I had a great little family, but I just couldn't find solid ground. I was diagnosed as Bipolar II, a diagnosis that my psychiatrist later decided was a misdiagnosis. I dropped out of graduate school, we finalized our adoption, I started regular therapy, and began taking depression and anxiety medication. The combination of less pressure and more support helped. I found some solid ground again.
Shortly after that, I started embracing my quirks as just part of who I was. I knew how to mask them when I need to and I knew how to talk about them as if they were just part of my "unique personality" and a result of my experiences. But the struggle of pretending to be "normal" and of never feeling like I had found my place kept following me. No matter what was going well in my life or how many people I knew loved me, I had these parts of myself that left me feeling like I was experiencing the world in such a different way than other people. I was struggling with things that other people seemed to do so easily. Then I had a light bulb moment. Three little experiences happened back to back and the pieces started to fall into place. One afternoon I was watching something on TV and Dustin was in the next room stirring something in a bowl. The sound sent me into a rage. "What is that? I want it to stop right now." I said seriously. I've always been super sensitive to sound. I can hear the quietest noises that others don't even notice and certain sounds get under my skin in a way that takes my breath away. It feels like if the sound doesn't stop, my brain might explode. I wish I were exaggerating, but I'm not. "It's hummus", he said...continuing to stir. I went into another room and took some deep breaths. The next day at work I was telling someone about my sleep habits...how I sleep with ear plugs, an eye mask, a certain set of clothes that move in just the right way, how this one blanket needs to be folded over and just under my chin, and how no hair can be touching my face or neck. A woman who works with kids on the spectrum all the time said jokingly, "It sounds like you have some sensory issues". Later that afternoon a friend texted me and told me that I should write a book because my brain doesn't work like other people's and I think of things in a way that others don't (in a good but obvious way). And that's when the light bulb went off. Autism. I know about autism because I have a kid with autism. I know all the signs, but I had never considered that I might be on the spectrum. So, I started keeping track of all the things that made me think...maybe...maybe it's autism....
- Sensory issues:
- Extreme sensitivity to light and sound
- see story above about hummus, a recurring daily struggle in my life with certain sounds
- I have difficulty driving at night because I am extremely sensitive to headlights, etc, etc.
- Cannot stand the feeling of hair on my forehead or neck and wear a limited set of clothes that don't "bother" me. I also had a lot of issues with clothing in childhood.
- Struggle with eye contact with people I don't know very well (there is a script that runs in my head that says "look them in the eye"...I am also known to apologize when I realize I have not been looking somebody in the eye). I tend to look at the ceiling when I talk to people I don't know well, otherwise I struggle to form my thoughts/words.
- I do not like to be touched or hugged. According to my mom, this has been true since infancy. I preferred to be left alone in my crib rather than to be rocked or held.
- Struggle with small talk and initiating social interaction. Actually, I just don't do small talk. If you want to talk to me about your dreams and deepest fears, I'm down...but don't ask me about something "meaningless" and don't expect me to carry a conversation. I can't do it. I tend to be very quiet in conversation or I ask the other person a lot of questions so that they end up doing most of the talking.
- Struggle with social boundaries. I tend to talk about things that you aren't "supposed" to talk about, I tend to "over share" (see this post as evidence, I suppose) and I tend to be brutally honest. People don't ever guess where they stand with me and I don't really understand the point of lying, even if it would spare someone's feelings.
- However, I struggle to know where I stand with people. I have a hard time gauging how people feel about me- I tend to have an idea if they like me (based on social and visual cues), but I always worry that I am overestimating how they feel about me. Because of this, I tend to take the back seat in relationships and let others decide how much they want to interact with me.
- Occasionally come off as "cold" emotionally. I sometimes read as sort of "flat" unless it's a topic that I am particularly interested in, in which case I can be "too much". I have vivid memories, particularly from when I was in graduate school and obsessively "nerding out" about particular topics, of alienating people by dominating the conversation or staying hyper-focused on a certain topic that they weren't interested in.
- I have a hard time verbalizing or identifying how I feel apart from like 2 or 3 emotions. Because of that, I tend to rely on hard data/"objective" information rather than emotions.
- I am very literal. Very. Jokes tend to be lost on me...my poor husband, a jokester by nature.
- I struggle on the phone, especially with people I don't know, to know when it's my turn to talk. Yesterday I called to make an appointment somewhere and I interrupted the other person no less than 10 times because I thought it was my turn to talk. I tend to ask Dustin to make most of the phone calls. If I do have to make a phone call, I tend to script out what I am going to say before hand and I won't make the call until I know exactly what I'm going to say.
- Other stuff:
- I live with very strict schedule and routines and have severe anxiety about schedule changes or unknowns
- For example, if Dustin says he wants to go hiking later. I immediately need to know what time we're leaving, how far we're hiking, and when we'll be done. And I mean immediately. Not in thirty minutes once he's figured out a plan. Until I know the plan, I have severe anxiety.
- If I have to go somewhere new where I don't know how things "work"- where you go, what you say, etc, I will either stand back to watch other people and mimic them or have a panic attack and just not go.
- I'm a very deep thinker. I'm incredibly introspective and find that I am thinking about things that none of my peers seem to be thinking about.
In addition to starting to keep track of my own "signs", I also started reading about the experiences of women who have Asperger's (now part of the Autism Spectrum) and reading about their experiences was often like "looking in a mirror". It was wild.
Between my own list, the experiences of others who have been diagnosed, and conversations with my closest loved ones, I felt like I had enough "evidence" to pursue an evaluation. As I said in the intro, a diagnosis won't change me and the lack of a formal diagnosis won't change me either, but the process of continuing to learn and self-reflect will help me to better understand myself. I am committed to keeping a detailed journal through this process and trying to be as transparent as I can be. What I know for sure is this...Autism isn't a bad word and there should be zero shame in wondering if you're on the spectrum or pursuing information about who you are.