Autism: A Love Story

It has been a long semester guys, the most writing-heavy one so far. And as you all can see, it has caused a huge disruption in my posting schedule. However, for my Feature Journalism class, I was given an opportunity to write a paper that ended up turning into a profile of my relationship with Jess, through the lens of autism. I’m really proud of the way it turned out, and my professor loved it! Disability advocacy and an A+ all in the same paper- sounds good to me.

anyway, this is long. Like 8 pages long, which is way long by blog post standards. I’m mostly just putting it up because I’m proud of it, and now that winter break is less than a week away, I’m hoping my writing time can be spent here.

P.s. The picture of Jess makes more sense if you read the Banana Story down below.

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I would like to start this piece by telling you that even though this story is about me, it is not just my story. When I began this project, I assumed that I, as the storyteller would only exist as background noise, but as is the way of these things, I found my way forward. So, I stand by what I said. This is not my story. It’s not Jess’s story either. This is the story of our journey together, told through the lens of autism.  I hope that this snapshot gives you insight not just into who Jess and I are, but also as partners, teammates, and a couple of folks still crazy in love after all this time.

It is possible that there are more normal love stories, but the truth is you’d be hard-pressed to find two people more perfect for each other than my wife Jess and I. It would be easy to say that our love was foretold by Aphrodite or wished for on a magic lamp, but this is the real world, and we are nothing if not practical. Jess and I have become perfect for each other over the years through hard work, research, and communication. We’ve spent most of our relationship doing these things instinctually, as they’ve come up. It wasn’t until the spring of 2016 that I received a diagnosis of Autism Spectrum Disorder, which would both explain our past and change our future.

How do you describe your better half when they’re literally your better half? We like to say that Jess’s family prepared her for me without ever knowing it. Her parents raised a daughter that grew up to be kind, calm, and scientifically minded, with a sense of humor that can only be described as surreal. My life changed the day our paths crossed, even though I wouldn’t realize it until later. Simply put, she makes me better.

I’ve never interviewed someone while both of us are in our pajamas, sharing a blanket, with our feet tangled together, but how else was this supposed to happen? This interview was fated to be something decidedly un-interview-like from the beginning. There’s no way that two people who know each other the way that we do can do anything but tell stories, stories of our lives, and one of the major things that brought us to where we are now- autism.

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Memory is a funny thing. Especially when two people’s lives have been intertwined for as long as ours have; long enough that it’s difficult to tease our almost fifteen years’ worth of experiences apart. Memory is not infallible, though. We should share the same memories, but the longer my interview with Jess went on, the more she made it clear that we remember the steps that it took for us to get to where we are now differently. The way I remember it, the first time that the word ‘autism’ was uttered was in December of 2015, but I’m wrong. Jess’s memory, which is far more reliable than mine, is full of times in which autism was mentioned in tv shows or movies, and we questioned if any of the symptoms might apply to me too. Jess remembers thinking that “even if any of that applied to you, we didn’t know how to get you tested. It might not have even been possible at the time.” She’s right. Unless you live in a fairly large city that just happens to have specialists who are willing to diagnose adults, you’re pretty much on your own when it comes to these types of disabilities.

Jess had nearly twenty-one years of life before we became a we, and when asked, she admitted that she didn’t really remember much about our early interactions. Of course, she remembers yelling at me for smoking too close to the dorm entrances, and as a member of a group of underclassmen who screamed at PlayStation games and wept every Thursday night at medical dramas. At the time, she had no idea that I spent hours a day hiding under my dorm bed, which I’d put up on risers and hung blankets around to make my own personal Fortress of Solitude, a place to hide from the overstimulating nature inherent to dorm life. And when asked about the failing grade that I’d gotten in my first semester she didn’t even remember it, much less known that it hadn’t been because I didn’t do the work or that I blew off studying. No, I failed for the most autistic reason possible- even though I’d searched and searched, I couldn’t find the classroom. And it never occurred to me that the time I’d spent hunting for room 203 might be better spent asking for directions, or buying a map. When I told her this story her face went unreadable for a minute, which usually means that she’s processing, and when she was done, she sighed and said “that doesn’t surprise me at all now, but back then, it probably would have baffled me. How could someone lose a class?”

One overarching theme in our relationship is her trying to puzzle out how my brain works. Time and exposure have taught us that this is a universal experience when autism is the third wheel in a relationship. Over the years, Jess has been the one to teach me things that might seem automatic to you, but are radical ideas to me. Take the day that she introduced the crazy concept that other people’s brains worked differently than mine when led to me beginning to make a separation between how I felt and how others felt. She loves to tell the story about how I spent years struggling with the idea of people eating bananas, the one fruit whose mere mention would make me start to retch. One day it came up in conversation, and I began my general rant about odor and texture, and why on earth people would put up with eating a fruit that they hated. “Maybe it’s because bananas are cheap?” I guessed. She paused mid banana and informed me that she very much enjoyed the smell, taste, and texture of bananas, and was I implying that I thought that the whole world hated bananas but ate them anyway? I thought about it and admitted that while it sounded ridiculous when she said it like that, that yes, it was what I thought. Unpacking that lack of ability to separate myself from others, which is called Theory of Mind, has been an extensive discussion that continues to this day.

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Jess is sitting on the floor surrounded by books. She isn’t sure how she knows it, but even though I haven’t been formally diagnosed yet, she’s painfully aware that it’s time for her to take her first steps into the role of advocate. The height of the book piles negatively corresponds to the amount of time she has to learn about autism before she needs to adopt her ‘official’ role of translator, from me to the world, and then back again. “I must have read ten books in two or three weeks looking for ways to explain things to people” she remembers. Luckily, she wasn’t trying to figure the whole thing out on her own. When Jess was in college, she had a side job babysitting the preteen children of our university’s president and his wife, who just happened to be a psychologist who specialized in diagnosing autism. So, when it became clear that an autism diagnosis was in my future, Jess did the only logical thing- she called Jane, who was the first person to actually provide useful information. “Jane is honestly the person to thank for me being told that I needed to do everything I could to find you people who actually knew how to work with autism.” Jane was right. If the specialists, like occupational and speech therapists, that people with developmental disabilities need don’t understand autism, then no amount of advocacy can make it work. After helping Jess make a reading list, Jane casually mentioned that it had surprised her that I was only now being diagnosed; she had mentally diagnosed me the first time that she’d met me more than a decade before.

Autism Spectrum Disorder is defined as a neurological and developmental disorder that appears early in childhood and lasts throughout a person’s life. It affects how an individual acts, interacts with others, communicates, and learns. Neuroscientists still aren’t clear on the mechanisms that cause autism and other developmental disabilities, but what they do know is that it’s highly heritable, and my family tree supports that. Obviously, people that were born in 1918 like my grandfather never had the opportunity to be diagnosed with autism. Neither were people born in 1957 like my dad. But knowing what I know about autism now, it’s shockingly clear that my place on the spectrum was passed down to me by the men who came before me, so I’ve never thought of myself as particularly weird, just a part of the family tradition. When we talk about my family Jess often points out another reason none of my male relatives received a diagnosis is because autism often looks like other things. “One of the hardest things about identifying autism in your case was that symptoms that looked like anxiety were actually just manifestations of the autism,” Jess said. My highly anxious dad and his highly anxious dad weren’t blessed with a spouse that could be both love them and advocate for them.

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There is no feeling like sitting under a pile of blankets with the love of your life, preparing to ask them to tell you about all the hardships that you’ve caused them. Just take a deep breath and jump.

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Of course, when you were melting down every single day,” she starts off, “every night we were dealing with meltdowns, it was horrible. You couldn’t even tell when they were coming. I was the only one there pinpointing where it started and figuring out how to handle it.” Every autistic person melts down differently. For some, it is a violent act with self-harm and property damage, but for others, there are no visible indicators. When I meltdown, I rock my body, I cover my ears or my eyes, I lose the ability to communicate verbally, and if I’m not in control of my hands, sometimes I hurt myself. Jess is a master at reading the early signals. “I don’t even know how to describe it. I know by the way you’re standing or sitting or breathing or holding your hands. In fact, to most people, my powers of observation seem like magic.” One of the things that we’ve made a priority in our post-diagnosis world is communication. It’s probably the best decision that we could have made for our relationship, because it allows me to take control over my own life, and keeps her from feeling like she’s on-call all the time.

This realization that it wasn’t my job to change the way that I interacted with the world and that it also wasn’t Jess’s job to take charge all the time was revolutionary to both of us. It broke down a barrier that had been in our way for almost 15 years; I struggled to communicate my needs, and more importantly, I couldn’t even verbalize what my needs were. When she became a willing advocate, it gave us both power. I asked her what she thought was different about the communication part of our lives and she answered so quickly it seemed like she’d been waiting to give the answer all night “I don’t feel like I’m caretaking you all the time”, “because we’re more like a team now” I asked? “Yeah,” she said. “We’ve done really well with boundaries now that we understand autism better,” she said as she shoved her toes under my blanket.

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It wouldn’t be fair to talk so much about the past without giving a picture of the present. Our approach to daily life has changed since the autism diagnosis. Learning to use coping skills like routines has let me make the most of my life. Up until I started college at 17, I had assumed that I was lazy and stubborn, the way almost every adult I’ve ever known had said, and after my eventual academic withdrawal, I was sure of it. Add burning out of multiple jobs, and I truly believed that I’d never be able to function in normal society. The autism diagnosis gave me a massive box of academic tools, coping skills, and access to accommodations to keep me on the same level as my classmates. And thanks to visual directions, I haven’t’ lost a class yet. Soon I’ll be heading into the workforce, and while earning a paycheck will be great, the best thing it will bring are the feelings of independence the knowledge that I have a purpose.

So, what does the future hold for us? Although autism makes me highly resistant to change, unfortunately, it doesn’t make me immune. Ask Jess, and she’ll tell you that her future career plans will make use of her magic powers of observation to help other people like me. She’s also committed to being an advocate while also supporting me advocating for myself. And me? Soon I’ll be out of college and using my hard-won writing skills to help people in the nonprofit world, as an advocate in my own right. Jess described our current and future relationship best when she said “we’re comfortable with we’re doing, and it’s wonderfully healthy, and the communication is good.” Maintaining all those things, that’s our future right there.

When it comes to the topic of autism and the journey that it took us to get to it, I have always been the dominant voice. I expected these interviews were scary for me because I knew they required a deliberate switching of roles, with me as the vessel, filled up by Jess’s experiences. But in writing this, it became clear that I had been wrong in assuming that a dominant voice ever existed. The way we each contribute to the story of our journey in serves the purpose of strengthening connections with each other, and with other people who are walking similar paths.

My Fade Out

I dissociated today in therapy.

This is something that I’ve dealt with since childhood, although there’s no evidence to explain why. The problem with fading out so early in life is that even if something did happen to cause it, I can’t remember what it is.

What happens to me is what therapists tend to call Profound Dissociative Amnesia, which sounds a lot more complicated than it is. It just means that when my brain decides that I can’t handle something (usually related to strong emotions), it just takes my consciousness out of the picture.

While it’s very kind that my brain is looking out for me, it can cause a lot of problems.

Like not remembering most of my childhood.

Or ruining friendships in high school. Or coming to realizing that I’m driving around and I’m totally lost (this was before the days of GPS).

But this is about today.

I’m in the process of ending a toxic friendship. After months of trying to get them to respect boundaries, to not verbally attack me, and to not use me as their emotional garbage can

I‘m done. 

They asked for closure, and I think that’s fair, so I met with my therapist to plan out how to approach it. After talking about setting boundaries and making rules about behavior, my therapist started comparing my friendship to an abusive relationship.

And I was gone.

I came to with her asking me questions in a tone of voice I’d never heard her use before. She got me ice to hold in my hands, and grilled me on who I was, where I was, and when it was. Everything was fuzzy, like when you suddenly get woken up from a dead sleep. After I figured out the logistics of who and where and when, I knew one thing.

I was so embarrassed.

Which seems to be a theme lately. I’m embarrassed about meltdowns, embarrassed about dissociation, basically, I’m embarrassed that I have non-standard coping mechanisms.

I wish it didn’t happen. It says so much about who I am and what I fear. Like today, triggers often come as a surprise to me, out of nowhere, and now my therapist knows.

I’m self-aware to the point of dysfunction, and I hate not knowing what I’m feeling, or why I’m feeling it. I try to avoid talking to my therapist about things that I haven’t figured out, because the idea of someone realizing something about me, before me, terrifies me.

I do realize that’s what therapy is usually for, but I still anxious and scared about having to talk about the dissociation, and what the fact that I dissociated when I did means.

For now, I’m exhausted. I’m still fuzzy around the edges, and to be honest, I’m still fixated on what happened. I try not to ruminate about what happens when my brain exiles my consciousness, but I can’t help but wonder what happened while I was gone.

I don’t like when this happens. I don’t like feeling helpless, and I hate feeling like I’m being defined by my disorder. What do I do if this keeps happening?

Don’t worry. That’s a rhetorical question.

 

 

 

Theory of Gifts

As the Holiday Season rolls around, I thought I’d share a theory I have about the giving and receiving of gifts.

The day before I headed out to an Eating Disorder treatment program several states away, a good friend of mine came over the day goodbye. In addition to well wishes, he brought with him a sort of care package, containing a mixed CD, and a copy of his favorite book.

The concept of gifts has always been hard for me. In my family, there’s a lot of stress around gifts, and I’ve spent most of my existence despising both giving and receiving them. While getting gifts still makes me anxious, I’ve gotten better at giving them. Enjoying crafting has made me take joy in giving someone something that I’ve made just for them. But until recently, gift giving has largely been me having fun making something, and them enjoying it.

And don’t get me wrong, a lot of times that’s what gift giving is, and that’s great! But sometimes, gift giving is deeper and more connecting than that. It’s taking a little piece of yourself, things you love, things that help you, that’s that are important, and giving them to someone that you care about. Gifts like this are saying “I can’t be with you right now, but here’s a little piece of my soul for you to keep until I can.”

When it’s framed like this, it actually takes a lot of stress out of the whole gift-giving process. It doesn’t really matter if I like what someone gives me, because I like the fact that they wanted to give me something. And it applies in the other direction too, someone I’m close to will recognize the act of gifting as special, no matter what it is.