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.

* * * * * * *

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.

* * * * * * *

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.

* * * * * * *

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.

* * * * * * *

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.

* * * * * * *

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.

The Pain Scale

“And can you rate your pain on a scale of 1-10?”

I don’t know about you, but for me, this scale is not useful AT ALL. I’ve gotta tell you that the yellow face looks more constipated than in pain, and the utter horrible face seems more like he’s upset that his flight got canceled and he’s going to have to eat at Chile’s.

I’ve been thinking about pain a lot recently, mostly because I’ve been experiencing varying amounts of it recently. Last year, my neurologist began to suspect that some of my symptoms (extra high heart rate, ringing in the ear, and postural headaches) might be caused by a spinal fluid leak. We took a bit of a gamble and decided to try a procedure called a blood patch that would fix the leak if there was one. And it worked! The procedure itself was painful, I was couchbound for a few days and it took a week or so to feel normal again, but it worked and it was worth it.

As I implied earlier, I’ve been in some pain. You may have even inferred that I had a new leak. This is all true, but it’s not the reason that I’ve been in so much pain- this time around, the blood patch wasn’t nearly as straightforward or worth it.

I won’t describe how a blood patch works (you can google it if you want) because it makes some people squeamish, but some degree of pain and discomfort is normal. I can handle normal. The first 48 hours after seemed pretty normal, but normal disappeared pretty fast after that.

At one point I rated my pain as an 8, which may not sound like a bit deal until you hear this fun fact about me. Several years ago, I was in the emergency room with GI pain. The lady at the desk saw how much pain I was in and got into triage almost immediately so they could get me admitted and on some pain medication.

I sat in a chair, and a nurse starts talking to me, and I pass out. I wake up almost immediately and then pass out again. I struggle to stay conscious the whole time I’m being interviewed, and at the end of it, the nurse asks me to rate my pain, and I rate it a 9. The nurse informs me that if you’re in so much pain that you can’t stay conscious, that is always a 10.

As I said, an 8 is a big deal for me. The 8 lasted 24 hours. The pain has been slowly drifting down the number line, but still, it’s been almost a month, and I’m tired of it.

I find it odd how I can tolerate chronic long term pain no problem. I dealt with an entrapped nerve for 10 months, I’ve had PCOS for more than a decade. But acute pain? Discomfort? I can’t handle even a little.

I’ve heard that this is an autism thing. Folks like me are either perceived as feeling too much, or not enough. But it’s so hard to tell because I can’t really describe the intricacies of my pain to you as much as you can describe yours to me. We all assume that our 5/10 pain is the same as someone else’s 5/10. Be we can be completely wrong! Mine could be burning and yours could be stinging, mine could aching and yours could be stabbing. It hurts my head, I swear.

I thought I’d leave you with my favorite pain scale, use it as you will

Ready, Set, Goals!

For most of my life, “goals” has been a 4 letter word. Now, I am fully aware that “goals” has 5 letters, but it might as well have been “fuck” or “shit” or “twat-waffle” (which also doesn’t have 4 letters) because goal setting is not something that I have the ability to do.

I don’t know about you, but in every grade from middle school up, the school provided a planner, which we were just magically supposed to be able to use effectively. And most kids did (at least as well as a 12-year-old can organize their life). This was one of those things that made me feel like I was lazy and stupid and a whole bunch of other words that ruled my life in childhood. Teachers said I was ‘smart but insert word here‘. Lazy, unmotivated, not willing to change, inflexible.

I believed all of these things about myself, until 2016, and then again in 2019, when I was diagnosed with Autism Spectrum Disorder, and 2 Specific Learning Disabilities (Reading and Writing).

This is how education changes live, folks. I believed that I was lazy and stupid and all those other things negative identities that got gotten lodged in my self-identity for 28 years. That’s a seriously long time to think those sorts of things about yourself. that’s a whole childhood. Especially since all it took was a handful of hours and a bunch of tests to show that I’m not, in fact, lazy. I’m autistic. I have learning disabilities. I have Auditory Processing Disorder, and I’m Hard of Hearing.

Turns out, with hearing aids, aural therapy, and occupational therapy to help me, I’m actually pretty great at organization!

I’m not going to proselytize about Bullet Journals again, but I did want to show how I set goals and using my Bullet Journal has led to my success, both in organization and in goal setting.

I’ve never been able to make a pre-made planner work for me, and oh how I’ve tried. This makes sense if you’ve really think about it. Journal, planners, and calendars are made for the neurotypical majority, and autistic minds simply don’t think that way. This led me to the realization that if I wanted something that was going to work for me, I would have to be the one to design it.

I’ve been Bullet Journaling for more than 2 years now, and I’ve gone through a lot of changes because I started out knowing that I needed something, but not knowing how to do it. I did a lot of trials. I tracked a lot of things that didn’t actually need tracking, and I set goals with no support or follow up. None of this was effective. I’ve spent years tinkering and I’m pretty satisfied with what I’ve got, especially with this new goal system I’m trying out for this semester.

I begin the month by setting 3 or 4 goals. These are monthlong things that I want to work on. I also have a to-do list that has single things that I want to get done before the end of the month. I have daily trackers for things that I’m aiming to do every day. These used to be located on my weekly page, but they cluttered it up, and I’ve found that being able to see trends monthly instead of weekly is better anyway. This is what I fill out out the beginning of the month- it has a follow up at the end of the month, and that’s what makes this so effective.

The end of the month goal page lets me analyze how the month went. Thinking about what worked and what didn’t work not only helps me change to how I make future goals but lets me figure out how to make changes for the next month. Next month changes can either be solutions to the ‘didn’t work’ stuff, or it can help guide goals for the coming month.

There are also less analytical parts that aim to be positive and fun. I love reading and I read a lot of books a month, so picking just one can be a satisfying challenge. It’s also really interesting to be able to see what songs have been stuck in my head over time (does anyone else have an earworm at all times?). Successes is a feel-good after analyzing what went wrong. Successes can be related to the goals, or they can just be stuff that I’m proud of and want a record of.

I’m totally okay with saying that the numbers cloud was borrowed from a bullet journal Instagrammer because it’s awesome. Like the earworm list, it’s fun to track over time, plus, it can be a catch-all for little things I want to remember, and is the place for humor (like the ‘doing nothing as self-care’).

So there we are. This is how I set goals. Is it always perfect? No, but that’s the point of goals, at least for me. I need to work through what I actually want and how I’m going to get it, and this set up allows me to do that.

I never would have thought before that organization could be so individualized, and  Occupational Therapy definitely taught me how to figure out what I want from being organized and how to set goals, and most importantly, techniques for figuring a system out on my own.

If any of you folks have a goal system, an organization system, a bullet journal, or anything that you feel inspires you, I would love love love to hear about it!

Becoming: Autism Style

I am a reader. At three years old I surprised my parents by reading full sentences out of nowhere, and the rest was history. These days, ebooks from the library fuel my need to read. The only downside to library books is that new or popular books can take months to come in.

I waited fifteen weeks for Michelle Obama’s book, Becoming. It took me a while to get through (thank you midterms), but I was really happy about a couple of things. One, although she spells it differently than me, her nickname is Meesh/Miche too. Guys, I’ve got a FLOTUS nickname! Secondly, there’s always the worry when you learn a lot about someone that it will ruin them for you, but I can confidently state that I still want to be Michelle Obama when I grow up.

Towards the end of the book, she was talking about Barack, and she said: “Being president doesn’t change who you are, it reveals who you are.”

I immediately recognized that this doesn’t only apply to presidents. My brain went straight to “diagnosis doesn’t change who you are, it reveals who you are.” And that makes sense, right? I know that when I was diagnosed with Autism, it didn’t turn me into an entirely different Meesh. It didn’t even alter the Meesh that I was. It just showed parts of who I was in a new light.

And I think that this was a fantastic thing. Because I could have looked at some of my personality traits that I now knew to be autistic, and suppressed them. I could have taken that attitude of ‘well, I might not have a choice in having autism, but I have a choice what people see of me.’ I could have. I think it might have killed me.

Instead, I celebrated. I am how I am for a reason. And I am not alone, there are others like me. I put my money behind the fact that the people who cared about me would keep caring about me. I never expected that strangers on the internet might accept me and care about me too.

This is not to say that I don’t get upset or frustrated. Hell, I get frustrated every day. Some days the world seems impossibly unfair, and it seems like everyone else can do things more easily than me. It seems like I’ll never achieve my goals. Some days I’m not sure what my truth is, and that hurts.

In one of the last chapters of Becoming, Michelle writes

“So many of us go through life with our stories hidden, feeling ashamed or afraid when our whole truth doesn’t live up to some established ideal. We grow up with messages that tell us that there’s only one way to be American—that if our skin is dark or our hips are wide, if we don’t experience love in a particular way, if we speak another language or come from another country, then we don’t belong. That is until someone dares to start telling that story differently.”

I don’t particularly care how American I am, but what struck me here was that even if I feel like people can’t see the real me, or that I’m not living up to expectations (usually ones that I’ve set for myself), it’s ok, because there’s one thing that I know I want.

I want to tell the story differently. I want to show people that there are many ways to be autistic and that none of them are tragic. Autism doesn’t mean life is over, it means life is different. And no matter what anyone says, we all still belong.

Skipped

Guys, I did a thing. A big thing (at least I think so!). I signed up for Advocacy Training!

Let me back up a little. 2 years ago, I started volunteering with an organization that does programming for people with developmental disabilities and their families. I’ve really enjoy it, I mostly work with kiddos, both neurodiverse and neurotypical, and it makes my day. Well, week, actually, but that’s semantics. But anyway, what I’m trying to say is that they’re pretty good people

So when I got an email about their advocacy training, I was immediately interested. I’ve been slowing trying to build up the skills I need not only to advocate for myself better but my community too. And this email seemed really promising! They didn’t just advertise the training for families and volunteers, but for self-advocacy too! Do you know how rare that is?  I was looking to sign up for a midwestern region Autism Conference, and they had registration for professionals, for educations, and for parents. Can you see whose registration they’re missing there? I’ll tell you- OURS.

But flyer didn’t do that. It said right there on the top that self-advocates were being included and I’m fairly certain that’s how I managed to momentarily punch through my anxiety and hit the “submit registration” button. It helped that Jess could come too- you know, the buddy system and all.

So here I am Monday night, the anxiety about doing something new and having to out myself has been brewing for a few weeks now. My name isn’t on the sign in sheet, which isn’t a problem, it turns out, they just add me on. Then we go around the circle and do introductions- our names and why we’re here. I was a little preoccupied with worry to really care why anyone else is there. So we go clockwise, which means that Jess is going before me. This isn’t ideal, because it’s a lot easier for me to introduce myself, and then have Jess go “I’m with them”. Or something like that. She usually makes it sound nicer. She’s got mad skills like that.

So Jess goes first, and says something along the lines of her “often acting as my voice”. Which is fairly accurate, given that she handles things like phone calls and making appointments. Plus all the times that I’m having auditory processing issues or am having a low verbal communication day. So it wasn’t that what she was saying was wrong, it was the way it was interpreted.

Because the trainer assumed I was nonverbal

And he skipped me.

Guys, that felt like shit. It felt like he looked right through me, and assumed that I had nothing to contribute.

I froze, and Jess reacted (which is usually the way of things), and the guy said he was sorry, that he was confused about what Jess had said. Except that I’d had a conversation with him before the training started. So either he’s oblivious, or he made a wrong assumption and didn’t want to admit it.

So needless to say, I was pretty angry for the next hour or so. The trainer made sure to ask my opinion regularly, and I’m perfectly willing to admit that I was pretty snarky. And while my snark game is strong, I’m also incredibly non-confrontation, so I snagged Jess’s car keys and hid in the car while she talked to the guy.

She said that he felt bad, that he wanted to include me, that he wanted to hear my opinions. And I’m sure that he does, really.

I guess it’s like this: I’m always so worried about coming out of the autism closet, and usually, it goes. Worst that happens is some overly personal questions, or me having to pretend to be interested in someone’s cousin’s nephew who also has autism. Nothing really bad has ever happened. That’s why being treated like I wasn’t even there was so surprising. Being invisible to the person who’s supposed to teach me how to advocate for myself has dropped a ball full of contradictions in my chest and it’s wriggling with anxiety.

So I bet you could have guessed, but tl:dr I’m going back for the next session. Partially because I already committed to this, partially because I think this information will be really useful, and partially because I learned that neurotypical people aren’t like me when it comes to communication. They don’t plan ahead and sometimes it bites them in the ass, like what happened on Monday. I’ve learned that sometimes I need to give them a second chance because that’s what I’d want them to do for me.

Stay tuned in November to see if the trainer wasted their second chance and had to face my wrath!

 

Just Take Me Back to Who I Was When I Was Younger

“Just take me back to who I was when I was younger” A Great Big World

I turned 30 this year, and I’ve started to notice that people my age are feeling old (in a bad way). And I think that’s pretty standard for your thirties. Your twenties are for making mistakes and finding yourself, and you get through that all of that and come into your thirties only to find that you’re *gasp* old.

It hits some people harder than others, I think. From my observations, people who had really positive teens and twenties have a harder time leaving them. I’m talking about the folks for who the phrase “high school is the best years of your life” applies. And this isn’t a bad thing! I mean, who can judge someone for having a positive experience, right? All I’m saying is that I was definitely not one of those people.

My teens were filled with a chaotic home life, trouble with teachers, coming to terms with my queerness, and the beginning of the mental illness that would define my twenties. My twenties, as you might have guessed from the previous sentence, were filled with breakdowns. I had an Autistic Burnout which left me with a slew of sensory issues. I cycled from being incredibly productive to not leaving the house for weeks (if this sounds familiar, I suggest you check out Bipolar Disorder). I spent two years in higher level care for an eating disorder, and also three psych hospital stays during that time.

I clawed my way out of my twenties, and now that I’m free, I’ve realized something. You couldn’t pay me to be young again. I like being my age, so many good things have happened over the last year or two that makes me so happy to be where I am in life.

The thing that changed my life was my Autism Diagnosis. Guys. Ladies and gentlemen, dudes and dudettes, knowing changes everything, and the number one thing that it changed was how I viewed myself. I had been told (and so I believed) that I was smart but lazy. Feeling that way about yourself does a number on your self-esteem. So when I found out that I was not in fact broken, but Autistic, something changed. Not overnight, obviously, fast than I had expected. My diagnosis also gave me access to services like Occupational Therapy, where I’m learning strategies to help me function as my best self.

So here I am at 30, and how am I spending the first year of my decade? I’m in college, for the first time in many many years. I am active in my church, and I volunteer with an organization that serves children and adults with developmental disabilities. In a few weeks, my wife and I celebrate our 10th wedding anniversary, and our relationship is so strong (partially because we’re awesome, and partially because we’ve had a lot of therapy, individually and together. I’ve been working on my gender identity and had top surgery to help me feel like I fit in my body. Due do a procedure and a new medication for my POTS, I am so far able to do more things (museums, the zoo!), and be so much more active (riding bikes, rock climbing!)

And that is just this year. For the first time in forever, I’m looking forward to what’s coming. And I’m not one of those blissfully optimistic types that assume everything will always be perfect. I have Autism, and sometimes, that sucks. I have mental illnesses, and sometimes that sucks. I have a chronic illness, and that almost always sucks. But when these things are well controller, I can work around them. When I am a stable human being, I’m better prepared for issues that may come.

I definitely don’t want to go back to who I was when I was younger, but I do wish I could leave past me a note saying “don’t worry, it won’t always be like this.”

 

An Educational Miracle

Jess and I have always joked that me getting through high school was a God damn miracle. Mostly because I don’t talk to people and I have trouble following directions and I don’t tend to participate.

When we began to prep for me being back on a college campus for the first time in 12 years, it started to become less of a joke, as we struggled with accommodations and my inability to follow written directions (aka, I get lost a lot), and yet again, the fact that I don’t talk to people. Even important people, like the ones at Disability Services, or my professors.

Now that school has started, there are no jokes to be made- the fact that I even made it out of middle school was the miracle, and there are no words to describe how unlikely it was that I graduated high school, much less that I graduated in 3 years.

Smart, but lazy, my teachers said. And those were the ones that like me.

I am started my third week of school, and some things have become very clear. 1: I can’t understand professors when they talk. I can hear them, but it’s all garbled. 2: I can’t read most of my textbooks. The words are too closed together and I can’t make my eyes move between lines. The words just won’t cooperate. 3: I was not built for group work. I struggle to communicate and to figure out what people want from me. And worst of all, there is constant talking and texting and emails- way more than I can handle.

I have some accommodations through the University, thank goodness, but only ones that apply to Autism. To get help hearing my professors, I’d need an Auditory Processing Disorder diagnosis (I have an appointment with an Audiologist in October). In order to get software that would help me read my textbooks, I’d need a Dyslexia diagnosis (which I’m not certain I even have). And no amount of diagnosis’s could get me out of group work.

So I’m not here to complain, I’m just really frustrated. On one hand, it’s nice to know why I had so much trouble the first time I tried college. On the other hand, I did everything right this time (registered with the Disability Office, took classes I had a good chance at succeeding in, etc), but things are Still. So. Hard.

Going back to school was a big decision for me. It would be so easy to stay home all day and only talk to Jess and my therapist and my OT. But I think I want more.

I’m just so afraid that I won’t be one of those Inspirational Autistic Success Stories (IASS’s for short). Instead of pushing through adversity and finding my special wings to fly off into the sunset with, I might *gasp* fail.

Sometimes no amount of trying can make you succeed. Sometimes instead of rising up, you burn out. Sometimes thing don’t get better, they only get worse.

So, either I will find help and get my shit together, or in a few months, you might be reading a post here about what to do when your plans fail, and how to set realistic expectations.

I hope it’s the first one, don’t you?

Adventures in Snacking

Two years ago, at age 28, I was diagnosed with Autism Spectrum Disorder, and one thing they do as part of testing is that they interview you, and they interview your family. It was after they interviewed Jess that I heard a term that had never been applied to me before.

Picky Eater.

I was offended. I was more than offended. I was an adventurous eater for goodness sakes! I ate soft shelled crab! Garlic ice cream! Peppers so hot they’d melt your face off!

I was offended. Until certain truths were brought up to me. I had a long list of food that I wouldn’t eat because of texture issues (ricotta cheese, bananas, anything with a grainy texture). I would eat the same foods over and over for months or even years at a time (Honey Nut Cheerios for as many meals as I could get away with being a good example.) And most significantly, I had an aversion all things new.

Shortly after this, I learned two new words: ARFID and Samefood. ARFID is an eating disorder- one where the disordered behaviors having nothing to do with weight or shape, and more to do with food phobias or sensory issues. I have ARFID, and it’s something that takes a lot of management. I heard of samefoods from the Autism Community, and they perfectly described my experience with Honey Nut Cheerios, of having specific foods that were some sensory friends and comforting, you wanted to eat them all the time!

All of this brings me to today and my Adventures in Snacking. With classes starting and my mealtimes being more irregular, I needed to find some new more portable snacks. And that was a big problem.

We learned when I was in treatment that it takes about a week to acclimate to a new food and to be entirely honest, I don’t have time for that.

Clearly, drastic measured needed to be taken. So we designed a challenge. A game even.

We took a long walk through the grocery store and picked out some things I was willing to try. Mostly things with a lot of protein, because my blood sugar appreciates it. Normally trying all the options would take forever, but not today my friends!

We portioned them out so that Jess and I each had one bites worth, that’s it, only one bite, and after the bite was consumed, it got rated, then sorted, into three categories: ‘I’ll never eat this’, ‘I’ll eat this if I’m in the moods’ and ‘I want to eat this all the time’.

And I found a few new snacks, including a yogurt that has a tolerable texture, and chicken chips with 7 grams of protein!

This was definitely better for me than taking weeks being miserable because I’m constantly trying new stuff

Sometimes with Autism, you have to get creative, and it doesn’t always work. That’s why I’m so relieved that this one did, especially because I’ve got so many other changes on.

I’d love to hear any creative solutions you guys have come up with!

Top Surgery Recovery: A Month in Pictures

My god does it feel like forever since I’ve been here. It hasn’t really though, it’s been almost exactly a month, and do you know how I know that? It’s been 4 weeks since my surgery!

Now between the recovery and the pain meds and the inevitable POTS flare, blogging has been low on my priories list. I have, however, been taking a lot of pictures.

*warning* Some of these are of my bandages and incisions, so if you’re squeamish or avoid NSFW stuff, I’d stop here.

Are we all ok from here out? Excellent! Here we go!

This is 24 hours after my surgery. The bundles on my grafts stayed on for another 6 days!

We have a tradition that I get a new stuffed animal after a surgery. This is Shel the Unicorn, who is very soft, with a super stimmy horn!

Not to be outdone by Shel, Angel checked in on me whenever he was allowed. The cats had to live in our office for a few weeks, so they wouldn’t accidentally disturb my grafts or my incisions. 

You may not be able to tell from my face, but I so excited because my drains are coming out- and that means that for the first time in 9 days, I can shower!

Here I am discovering one of the best parts of Top Surgery: being able to look down and see my feet without boobs in the way!

After this type of surgery, you have to wear a surgical compression garment, which is sensory hell (especially knowing now that they gave me the wrong size!). This picture was taken when I was finally able to wear an athletic compression shirt instead, and what a relief it was!

Chronic illness doesn’t care about gender or surgery, so this is my modified Physical Therapy set up, so hopefully, my POTS will continue to improve!

I hate to end on a depressing note, but the reality is what it is. One of my grafts failed, and that is both painful and upsetting. The healing is slow, and we won’t know what it will look like until it’s totally done.

That was quite a ride, eh? And it’s still going.

My sad, rejected graft still has a lot of healing to do. I’ll also have to decide how I want to deal with it if the damage is super obvious.

I also start classes next week, I’m finally finishing my Bachelor’s! It’s been 12 years since I’ve been on a campus or in a classroom, so this should be interesting.

Look forward to ‘Autistic Adult Student’ posts coming soon to a blog near you!

Great Expectations?

I feel like I’ve hit a bit of a wall lately when it comes to contributing to my community. It’s not that I don’t want to participate. It’s more like every time I try to, I freeze. This isn’t exactly surprising for me, and I’ll tell you why. We all know about the Fight or Flight response. What they don’t tell you until you hit Advanced Mental Health Status is that there’s a third ‘F’ and that ‘F’ is Freeze. I am a freezer. Not the kind that keeps your popsicles solid, no, I am that gazelle in the African Savannah who hears the lion coming and decides that the best course of action is to stand perfectly still and hope that the lion thinks they’re dead. Let me tell you right now, as a gazelle, it doesn’t usually work.

I love being an active part of my communities- and there are a lot. My friends used to refer to me as the Uber Minority, which makes me sound like some sort of awesome Transformer type robot. Unfortunately, that is not the case, and it more means that people kind of tilt their heads when they first meet me. They know that there’s something different about me, but they can’t tell what it is. Sometimes they try and guess, which depending on my mood, can be a lot of fun. Given my combination of identities, no one ever guesses perfectly right, and honestly, if they did, I wouldn’t know what to do with myself. I’d probably off up some sort of prize. Probably a Tangle, as I have a bunch, and always have one on my person. Not my fuzzy Tangle though. Hopefully, they’d appreciate their prize.

A lot of communities mean a lot of opportunities to interact. There’s National Eating Disorders Month, Autism Acceptance Month, and Pride Month, just to name a few. All of these usually make me really enthusiastic about being active on Tumblr and Instagram, and even here on this blog. But it doesn’t be a surprise to you that every opportunity that’s come up this year has made me freeze. Activity on all of my accounts dropped off suddenly, and I hate it so much.

I’ve been trying to work my way back up. Luckily, I had submissions I could use on my Tumblr blog (check it out!), and was at least still comfortable liking things on Instagram- things with minimal interaction, and that didn’t require me to put myself out there. Because let’s face it, I’m a bit of a coward.

At least that’s what it feels like. If I think about it without beating myself up, it’s more like I’m a perfectionist- a perfection that when combined with my intense need to be a good advocate and a good disabled person, freezes me in my tracks.

But that’s an awful lot of pressure to put on myself, isn’t it? I can say it, I’m not sure that I really mean it. So let me put it all out there. It is not my job to represent every person in my community. It is not my responsibility to be witty and eloquent so strangers will pay attention to what I have to say. IT IS OK for me to explore my identities publicly, IT IS OK to share my opinions, and IT IS OK to say things that others in my community disagree with (as long as I am respectful).

I can take chances, make mistakes, and get messy and the world will not end!

Doesn’t all that sound great? How awesome the world would be if we were all able to go through life unafraid of trying, even if there was a chance of failing. Clearly more easily said than done. But if therapy had taught me nothing, it’s that baby steps are always the way to go. So:

I will keep to my Tumblr post schedule (but not kick myself if I miss a day)

I will keep writing (even if the end product doesn’t get posted here)

I will have fun posting things to Instagram (and stick around to see what my friends are posting too)

I will participate (and I’ll try to remember why I enjoyed participating so much in the first place)

And lastly, I won’t get down on myself when things aren’t perfect.