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.

* * * * * * *

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.

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!

Bored Equals Crabby

Jess visibly cringes every time I utter the words “I’m bored”. I’m not positive if it’s an autism thing or not, but being bored makes me downright crabby. And if I’m suffering, everyone ends up suffering (this makes me sound evil, I promise I’m not).

I’m out of school for the summer. I didn’t end up taking summer classes because a: there weren’t any that were super useful for my graduation plan, and b: My therapist, jess, and I all agreed that I needed a mental health break. I was all set for summer, I had a ton of things I wanted to do, like ramp up my physical therapy routine, do a lot of training with the puppy, and volunteer. None of this happened. I feel like at this point there’s no point in making plans because my body will always find a way to screw things up.

Firstly, I managed to injure my foot. I cannot explain how aching feet makes me feel so old, but they do. After seeing a podiatrist I spend several weeks in a walking boot, which was surprisingly ok sensory wise. I mean, yeah it smelled a little weird and the velcro made awful noises every time I walked, but the boot put nice, snug pressure on my foot and calf, it was like it had its own little weighted blanket. Now I’ve graduated to extra supportive shoes with extra extra supportive inserts, but I’m still not allowed to walk normally. This has thrown a medium size wrench into my plans.

There is, however, an massive size monkey wrench too, and it’s called Respiratory Muscle Weakness. I mentioned a few weeks ago that earlier this year, I started to have trouble breathing when I laid down. I am not going to go through the whole ordeal again, but needless to say, I’m up to 12 vials of blood, and 11 radiological tests, and I’m not feeling any better. Being able to exist in a horizontal position is really important for things like physical therapy, and being as to sit upright at length without getting short of breath is ideal for everything else.

So here we are. My plan to stay on a schedule over the summer has been totally wrecked. My entire team and I know that routines are important to my mental health, so being organized is seriously necessary, but there’s only so much I can do.

I am willing to admit fully that when it comes to things like this, routines and plans and knowing what’s going to happen and where or why or how I totally fit the autistic stereotype. All I want to do feel surrounded by carefully planned activities and stimuli that make me feel good.

I’m in a tough spot though. My old plan was based on leaving the house every day, but that’s not really happening right now. So I’m at home. I’m reading a lot of books and getting ahead on writing articles and essays and blog posts. I’m also turning all of the D&D characters that I’ve designed into concrete ideas and  making character sheets for them. How is this useful? I’m not sure but if my current charcters ever dies, I’ll have 2 dozen others to replace him.

A query- is it harder for you all to have to change something completely, or have to change it partways? Because I’ve gotta tell you, it’s illogical, but I almost always do better if I have to say “fuck it, I’m scrapping the whole thing and figuring out something new” then if I have to collect the pieces and try to reassemble.

A real-life example here is that I’m not going to get to lift weights for my physical therapy- it’s just not going to happen. Instead i now have a pull-up bar so I can be vertical and not put pressure on my foot. It took a while to come up with something new, but it wasn’t painful, you know? The dog training on the other hand, I just can’t wrap my head around. It’s still me, it’s still Winnie, we’re still training, but we can’t follow the old plan. Not going to lie, I’m still struggling with this one.

This is just not how I expected my summer to go, and I feel kind of silly being disappointed about the whole thing. I feel like as an adult I should be able to handle change and boredom without turning into a crustacean, but here we are. I think that one of the downsides about being diagnosed with autism later in life is that I was offically ann adult for almost a decade before I found out about the autism thing. This means that I’m still learning to it’s ok for me to struggle with things and that recognizing my weaknesses and being gentle with myself is part of the package.

I’m still crabby though.

 

T. T. Testosterone

About a year ago (almost exactly), I made a big announcement here, do y’all remember?

If not, here’s a brief recap: I very excitedly revealed that because of the gender dysphoria that I had been experiencing, I was making the big decision to have Gender Affirming Surgery, aka Top Surgery. I think I said something like “holy shit, no more tits”. That sounds like something I would do, right?

Well, here I am again, in a similar situation, one that is yet again affected by gender dysphoria.

I was confident as hell going into Top Surgery. I’d known since puberty that I wasn’t meant to have breasts, and was ready to go as soon as the decision was made (from the first consult to the surgery day took about 3 months. This will be important later.)

I was also confident that once my chest was flat that my dysphoria would decrease to a livable level. Because when you fell outside of the gender binary, you have to be realistic about the fact that things won’t be perfect, but they will be good enough that it won’t affect your life too much.

It’s baffling how wrong I can be about myself. Don’t get me wrong, I love my new chest, it’s everything I ever hoped for. And to give myself some credit, my dysphoria about that part of my body is basically gone. Unfortunately, and unpredictably, even more dysphoria has rushed in and filled the void. I was in no way expecting this.

I considered myself lucky because my insurance company doesn’t require hormone therapy before top surgery like a lot of them do. I knew that hormones were an option and that lots of nonbinary folks do opt to use them, but back then there seemed like so many downsides, so many things that I didn’t want to happen to my body that it outweighed the results that I was interested in.

Testosterone things I want: fat redistribution, more muscle, facial shape changes. Testosterone things I don’t want: facial hair (other body hair is fine, I’m already super hairy), bottom growth. Testosterone things I’m neutral about: voice deepening.

Looking over the pros and cons on that list, to me, it drifts slightly towards hormones not being worth it. But when I started to think about it, I started to realize that these were not the only factors. A strange phenomenon started happening to me a few months after my surgery, and since then has been the driving factor when it comes to making T an option, and it’s not about how I see myself anymore, but about how other people see me.

I was so surprised at the rage that I felt the first time someone called me ‘ma’am’ after my surgery. My brain was screaming at the universe “I went through the pain of surgery and recovery and still people think I’m a girl?!!” It just didn’t seem fair. I’ve been using they/them pronouns for a while now, and I certainly don’t mind when people call me he or him or sir. But at this point in my life, she/her/ma’am makes my blood boil. I’m also at the point in my schooling where I’m thinking about internships and jobs, and how much more confidence I’ll have if I feel comfortable in my body.

I mentioned earlier how it took a while to go from consult to surgery last year. So when I finally made the decision to see an endocrinologist in a gender clinic, I assumed that it would be the same initial consult, secondary consult, required therapy, doctors notes, wait wait wait. Again, I was wrong. The doctor’s appointment was awesome. They asked about preferred names and pronouns (and used them!) The doctor and I talked for 20 minutes, and as it wound down, I expected him to tell me how many hoops I’d have to jump through next. As it turns out, the answer was zero hoops.

Right now. He said I could start right now.

Color me surprised. And that color would be the color of panic because I hadn’t expected that at all. Turns out there are doctors out there who respect the fact that you’re a well-informed adult who can make their own decision. The autistic part of my brain froze up, of course. There was a lot of sputtering and stammering. My wife had to remind me that we’d been talking about for almost a year, and then she humored me and we made a pro/con list.

I bet you all know what the end decision way. If you don’t, I’d like to direct you to the 3 dozen needles, box of alcohol wipes, and the viscous vial of pure dude juice in my bathroom.

It’s been two weeks, I’ve had 3 doses. I don’t feel anything yet, and I’m not expecting to yet. I’ll give you the same warning I’m going to all my friends- I will be going through puberty. Again. So if I’m irritable and smelly and hangry all the time and pimple faced and my voice cracks, 1: you have the right to poke fun at me, and 2: I’m still me, no matter what.

 

Waiting Waiting Waiting

*this is a vent in the purest sense of the word. I’m hoping that talking through how I’m feeling might grant me some insight*

Frustrated. Angry. Confused. Scared. Upset.

These are all “feelings” words that describe me today. Okay, not just today. Maybe its more like a few weeks. Or a decade. Or my whole life.

I’ve spent the last decade or so living with a chronic illness, and I like to think that by this point I’m pretty good at dealing with all things health-related. I’ve now realized that this is a lie. I’ve been lying to myself without knowing it.

There are, in my opinion, two major parts to being ill- the Physical and the Mental.

When it comes to POTS, I’ve got both of them down. I’m used to my heart rate jumping high, I’m used to being dizzy, and I’m used to my body being unpredictable (POTS affects your Autonomic Nervous System, which controls everything from how well your body digests food, to how efficiently it pumps blood through your body). And when it comes to the mental part, I can handle feeling useless, feeling frustrated that my doctor isn’t calling me back or that test results are taking forever. I’m even used to not getting to do things that I want (mostly things that involve a lot of standing).

The POTS stuff, as I’m sure you’ve realized is just background for what’s happening with me now.

About 6 months ago, I started to experience dyspnea, which is med-speak for ‘I can’t breathe when I lay down”. Thanks to POTS, I didn’t panic. I’m used to weird stuff happening to my body, remember? I figured that whatever it was transient and would disappear as soon as it began. This, my friends, was tragically optimistic of me.

I’m going to gloss over the first pulmonologist that I saw, the one who told me that I had Respiratory Muscle Weakness, a pretty severe case, and then refused to call me back. For a month! It sure feels like a kick to the gut when the person who’s supposed to be taking care of your health thinks that you’re too complicated and pawns you off on someone else.

*deep breath*

The doctor situation is better now. I’ve got smart specialists who communicate well. I’m so thankful for this, but I’m still frustrated and angry and confused and scared and upset. If I felt this awful when I was getting my POTS diagnosis, then I clearly must have blocked it out because it is damn near unbearable.

It’s the waiting that really gets to me. I’ve spent this past few weeks on the edge of my seat, waiting for test results to come in, and for doctors to call me back. And every time a test does come back negative, half of me is overjoyed that I don’t have Myasthenia Gravis or something like that, but the over half of my brain whispers to me that at least it would have been an answer.

So that’s all of my insight, every last piece. And what have I learned? I know that I don’t handle the unknown very well (this should not be a surprise to any of us though). I know that doctors who treat me like I’m a nuisance make me a tiny bit homicidal. Lastly (and this is the big one, I think) I realized that for the first time in the entirety of my adulthood, I’m really happy with my life, and the idea of some medical condition fucking it up is what’s making me frustrated and angry and confused and scared and upset.

So I’m going to keep my self grounded. Maybe do some self-care. I will not obsess about something I can’t change. And most importantly I’m going to keep my fingers crossed for an answer that’s straightforward and easy to treat. Something the exact opposite of POTS.

And until then, I’m going to BREATH

 

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.

Yes, But

I know that we all have things that we did in high school that we’re a bit embarrassed about. I definitely have a bunch, that range from mildly embarrassing to totally mortifying, and one those things that I did was improv comedy. Part of me mortified about it, but there’s something that improv taught me that has actually turned out to be useful in real life, and that is the concept of ‘yes, and’.

You see, improv comedy, unlike sketch comedy or stand up comedy, is a team effort. When it’s your turn to speak, the goal is to give your teammates something to play off of, so the cardinal sin of improv being to not leaving them something to work from. Hence, the ‘yes, and’ rule.

‘Yes, but’ works well too. As long as you’re giving your scene partners something to elaborate, you’re doing improv right!

Now I’m sure you’re sitting in front of your screen wondering what improv comedy has to do with anything, and if you’ll stay with me through the Story of the Audiologist’ I promise that it’ll all make sense.

Once upon a time, I was at a conference, and I discovered the magic of captioning. For the first time ever, I could understand everything that was being communicated. I remembered what had been talked about, and my brain didn’t hurt by the end of it.

So, me being me, I started researching, and what I can up with was Auditory Processing Disorder. APD means that while your ears can hear just fine, your brain has a lot of trouble interpreting the input.

It explained a lot, like why I can’t talk on the phone (everything sounds garbled), and why I can’t really hear people are saying if they don’t face me when they’re talking (turns out that reading lips is pretty effective!). And don’t get me started on how distracting facial hair is.

So I talked to my team, and we decided it couldn’t hurt to get tested, given how much trouble was having following my professors in lectures, and after a two-month wait, I finally got to see the Audiologist!

The above sentence may have implied that I was excited on the day of my appointment, but that is incorrect. It was a 7:30 am appointment. And it was 3 hours long. The testing was exhausting, even with my venti coffee. Although I have to say, the tests were fascinating. They tested if I could put syllables together to make words, if I could tell which ear sound was coming in, and if I could pick out words when they were layered with words or static. It’s totally the fascinating science-y type thing that I’d love to watch happen to someone else.

These sorts of tests need to be scored, but I did poorly enough that the Audiologist was confident saying that unofficially, I had APD! Amazing news, because a diagnosis is always necessary to get help.

I thought we were all set to go (and after 3 hours I was so so so ready to leave), until I realized, to my horror, that she had BUT face, and said that we also need to talk about something else.

Turns out that one of that tests that I took was a standard hearing screening, and it also turns out that I didn’t do so well on them. She told me that I had mild/moderate bilateral hearing loss. She also recommended hearing aids.

Hearing loss WTF

Hearing aids WTF

Turns out scaring and calcification on your eardrums can really fuck with your hearing. And that hearing loss makes Auditory Processing Disorder exponentially worse.

3 years ago thought I was pretty normal, now ASD, CAPD, Hearing Loss, probable Learning Disability (did I mention the Testing coming up in January?)

I feel very validated, but also kind of freaked out. All of these things are new, and I don’t handle new very well (but I’m sure you knew that). I’m excited to get my new tech, but I know I’ll be really frustrated before anything gets better.

Anyone with hearing loss/hearing aids/FM systems have any experiences they’d be open to sharing?

Winnie the Service Dog

Sorry I haven’t been around too much, school has been getting busier and busier as the semester goes on, and wait, there’s more!

I’ve had some trouble getting the college to stand behind my accommodations, aka, they saw my diagnoses, declared that there were lots of things they do to make my educational experience fairer, and then tried for months to avoid doing those things.

But sure that’s not all?

Stay tuned next week to see the post about the shocking end to my trip to the audiologist!

But seriously, you clicked on this because you saw the title, and I’m fine with the fact that you’re only here for one thing:

My girl, Winnie.

Jess and I have been talking for months now about the idea of a service dog. The discussion started back in August, in the first few weeks of classes, because she realized that she was getting worried about me being away from her all day, which is legitimate because while I do really well in public, I depend on her a lot to be my backup.

She can tell when I’m about to faint, when my blood sugar is low, and that’s just the medical reasons. She can tell when I’m overstimulated many minutes before I can, and can spot a meltdown from 100 paces. This means that she can intervene before I accidentally get lost or hurt myself. I don’t like to admit it, but things eventually can and do go wrong if I’m on my own without any backup.

Hence the dog. We combed through lists of tasks services that trained dogs can provide, to Autistic people, people with physical health, and people with mental health issues, and we quickly realized that I’d be safer and that she’d worry less if I had a service dog.

There was only one problem.

Going through a company that trains service dogs is hella expensive. And charities that provide dogs to autistic people? Really only cater to kids. So we made a really huge and life-changing decision- to train one ourselves. And don’t look at me like that guys, there’s a lot of resources out there, and we live in a big city with lots of resources! And if she doesn’t have what it takes to be a service dog, we’ll certainly love her anyway!

So, please forgive me if there’s a bit of extra puppy talk in the near future, but I also hope that as I learn about training Winnie to be a service dog, so will you! And if you think that Winnie is just too cute not to see all the time, we’ve made her an Instagram account. You can find her by searching for winnieintraining, or by clicking here @winnieintraining.

(and what the hell, here’s one for the road)

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!

 

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?