What I Talk About When I Talk About Hygiene

Let me be real here. Hygiene is not a topic that I like to talk about. I’m embarrassed; it’s one of the least talked about social skills, yet the one you’ll be judged most for not complying with. I have spent my entire life battling with hygiene, mostly because the barriers to success are twofold. One, what is considered hygienic is highly dependent on the society, and two, the majority of activities that are categorized as hygiene are very sensory heavy.

My current cleaning challenges are not new. Since I was very young, I’ve had an aversion to things that had, what I called, ‘slimy’ textures. There’s even proof! Home video exists of an adorably toddler me, fighting with my mom about sunscreen. It wasn’t a tantrum, no, in true me fashion, I slowly back away, grunting and flapping. Interestingly, that’s still my reaction to lotion.

The minute I was old enough to not require supervised bathing, I began looking for solutions limit my exposure to it. Baths made me feel slimy, and showering got my face wet, no matter how hard I tried to avoid it. I did learn quickly that if I turned on the shower and then sat in the bathroom reading for 20 minutes or so, no one really questioned whether I actually got IN the shower or not. On top of that, my biracial hair, while not as porous as my father’s, only needed to be washed every few weeks. Which was good, because when it was long, most of the way down my back, it took at least 24 hours to dry. If I was lucky. Since then I’ve perfected the ideal balance of waiting just long enough to shower. My hair is also very short, so it can remain unwashed almost indefinitely.

In high school I solved another hygiene problem- I hate wearing clean clothes. The smell of detergent, even scentless, is unpleasant, and while most people love putting on crisp clean clothes, I vastly prefer putting on something that I’ve worn for days. Or weeks. Turns out, everyone in their teens is going through their smelly puberty phase, no matter how much body spray they put on to cover it, and if you wear jeans and a hoodie every day, no one can really tell how often you’re changing them. Teenagers can be very self-centered. Thank goodness.

Becoming an adult brings new hygiene expectations, and I struggled to meet them. Working with kids meant that it was acceptable to wear comfortable clothes, but being socially acceptably hygienic was a puzzle. What was the maximum length of time between showers that I could get away with? Would my fuzzy curls give away the fact that they weren’t being washed? And worst of all, would the kids give me away by informing me at the top of their lungs that I was smelly?

 Autistic Burnout and mental health issues plagued my twenties. Which was bad for my career, but good for my hygiene preferences. When you never leave the house, showering, teeth brushing, and changing your clothes suddenly become unnecessary. Granted, having a very understanding spouse it in this situation is important too. While my wife definitely encouraged me, constantly, it seemed, she was very understanding of my reasons for not conforming to social cleaning standards. Plus, she was amazing at taking stubborn tags out of clothes. We also made deals, if I showered, I had to put on clean clothes (even socks!) and if we were leaving the house, deodorant was necessary. Even I couldn’t deny that it was reasonable.

An autism diagnosis changes a lot of thing. A lot. So many things start to make sense, and for me, hygiene was a big one. Framing my many issues as sensory problems suddenly made them more understandable. I don’t like water on my face because of how it makes my skin feel. I despise brushing my teeth not only because the toothpaste tastes terrible, but also because it makes the surface of my teeth feel different. Changing clothes had to do with things smelling different, and also with the texture of the cloth changing. Seeing it all this was made me feel less guilty about not caring about societal expectations.

Occupational Therapy did not begin pleasantly. There were so many things that I wanted to work on, and all my OT wanted to talk about was hygiene. We had sticker charts, we made routines and schedules, we even devised a reward system for when I made my hygiene goals. Most of these flopped. Luckily, my occupational therapist, who knows me so well at this point that its infuriating, realized that forcing these changes on me without delving into what the base issues were was useless. This is still a work in progress. Clearly.

I spend a lot of time explaining the way that I think. How autism affects who I am as a person, and how I live my life. That’s not what I’m talking about here. I’m putting my struggles out there, specifically because it’s not something I can really explain. Yes, I know that the issues are sensory based, but there’s no reason why enacting small changes should be so hard for me. These issues have existed my whole life. I’ve spent my whole life trying to minimize my contact with cleanliness. Even this doesn’t explain my problems. Two steps forward, one step back. Sometimes two steps back. Sometimes three. I fear that I will be fighting this thing for the rest of my life. I fear that no amount of stickers, or rewards, or distractions will decrease the stress I experience on my scheduled teeth brushing day. I fear that it’s not worth it. Is it worth it?

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4 Autism Stereotypes I fit and 4 I don’t 

So if you missed my Monday post, let me fill you in. In a one sentence summary, I talked about the harmful effects of stereotypes, and the importance of positive representation. I’m a little biased I suppose, but I think it was a pretty good essay. In writing it, it got me thinking about which autism stereotypes I fit, and which ones are definitely not me. It was actually really interesting. If you’re up for a session of introspective self awareness, I highly suggest it!

Do Fit:

1. Autistic people can’t live independently: The last time I lived alone was my first semester of college, all the way back in 2005. To say that it went badly was an understatement. I spend most of my time hiding under my bed, I forgot to eat, and I had to drop a class because I just plain couldn’t find it. Thank goodness I met my wife that first semester. Even when we were just dating, she had an innate talent for recognizing how she could assist me. She’s been called my interpreter to the world, and I think that’s one hundred percent accurate. But still, my caseworker has advised her not to leave me alone for more than 24 hours. If everything went exactly to plan, I’d be fine, but if something went wrong, if my routine was messed with, we can could end up in a position where I forget to eat or go to the bathroom. I’m working on independence in Occupational Therapy, but right now, it’s not my strong suit.

2. Autistic people sit in corners and rock: Ok, so it’s not always in a corner, but I am totally a rocker. Interestingly, I have different rocks for different things. If I’m rocking side to side, there’s no need to worry, because it usually means I’m just bored. If I’m rocking front to back though, that’s problematic. It means I’m overstimulated or that I’m about to melt down. Luckily, there’s are several people who can interpret my rocks and intervene if necessary.

3. Autistic people connect more to animals/object than people: Ask my wife to tell you the story of the time she threw away my shoe-box. It was early in our relationship, and she hadn’t yet experienced all of the autistic quirks that I come with. She threw away the box from my new shoes, and I sobbed. For two hours. I felt so guilty that they might think that I didn’t believe they could live up to their potential. So clearly, I experience hyper empathy with inanimate objects. And it’s not just your standard ‘my stuffed animals have feelings ‘ (they do!), even statues and cardboard boxes have feelings. My favorite street sign’s name is Oliver and I say hi every time I pass him!

4. Autistic people don’t make eye contact: So there are a lot of people who would say that this answer isn’t accurate. That I do make eye contact. In fact, they saw me do it last week, and am I sure I’m really autistic? I know I’d break their tiny little neurotypical hearts if I told them that every time they think I’m making eye contact with them, I’m just staring at the bridge of their nose. This knowledge might destroy their fragile little minds. All this being said, I can make eye contact. But it’s not intuitive, and reminding myself to do it every 10 seconds takes up a lot of energy. It’s also a bit uncomfortable for me, so I only really do it with people I know really well. Since they know me as well as I know them, they don’t find the sporadic eye contact weird. They’re just happy that it’s genuine.

Don’t fit:

1. Autistic people don’t have friends: I considered myself very lucky because I’ve never experienced bullying. Or if I have, I didn’t realize that’s what it was. This is a viable option, I’m not the most observant when it comes to social stuff. But as unaware as I am about socializing, I have always had friends. Granted, I’ve never been the one to start the friendship. The pattern in my life has been, an outgoing and extroverted person decides they want to be friends with me, and initiated contact frequently enough that eventually it becomes part of my routine, and a friendship forms. On top of being extroverted, many of these people have a talent that I wish more people had- the ability to accept that my social skills are atypical and my connections hard won, but they are still good. It may be difficult to be my friend sometimes, but there are upsides too.

2. Autistic people are savants/intellectually disabled: For whatever reason, people have a tendency to think that autistic people have either very high IQs, or very low IQs. The idea of an average autistic is almost as much of a white whale as the idea of an autistic adult. This sort of makes sense to me. Autistic people are only of interest if there’s something different about them. Which is totally unfair to those of who haven’t been given the Hollywood treatment. Autistic savants are rare, and are not even a little bit like the one’s shown in movies like Rain Man. And intellectual disabilities have been separated from developmental ones for decades now. Essentially, some people do have both, but a majority only have one or the other. I test well (the tests are mostly puzzles, and I love puzzles!), but my IQ doesn’t measure my social abilities, my ability to live independently, or my mental health. This is a problem that diagnostic professional are still working on, but since we won’t get any new changes until the DSM-6 comes out, we’ll just have to advocate for ourselves.

3. Autistic people have no sense of humor: In my opinion, very few autistic people fit this stereotype. Even if someone’s humor isn’t exactly your standard fair, it’s still considered humor! That people said, some types of humor are more accessible than others. Sarcasm can be hard for some people, not just autistic people either! It require tracking and recognizing a lot of different communication queues, which takes time. There’s definitely been times where I realized something was sarcasm 15 minutes after the fact; it took me that long to put it all together. I definitely use humor in my day to day communication. It often makes more sense to me than small talk and other types of interaction. Not to mention, making someone laugh is a really good feeling! Especially with people I know really well, being able to target their sense of humor makes me feel connected.

4. Autistic people are suffering- I am not suffering. No matter what certain organizations would lead you to believe. Are that parts of autism that are painful? Yes. Frustrating? Double Yes. Confusing? Triple Yes. But those aren’t autism things, those are life things. And when I say these things, there are always people who will pop and and say “Well you don’t count. You’re not one of THOSE people with autism (note the use of person first language. Ugh.) You’re not one of those poor souls who can’t speak or communicate of wipe their ass or love their poor suffering parents. They think this because they’re not looking at this from a neurodiverse viewpoint. Speaking is not the only way of communicating, and I can only speak from my own experience, but when I need assistance with things, it doesn’t feel like suffering. It’s just the way things are. Some autistic people may feel like they’re suffering. And that is their experience, and it’s a thousand percent valid. But I’ve been the way I am for 29 years, and my life is my life. It has its ups and downs. And downs don’t necessarily mean suffering. At least not for me.

 

Being Represented

 Anyone who’s ever turned on their television has already been influenced by autism stereotypes. From Rain Man to Sheldon Cooper to Dr. House, for whatever reason, writers seem to pick the same few autism symptoms, magnify them, and then use them as their character’s only defining traits. Its infuriating. Because the majority of people know what little they know about autism from TV and movies, and if all the autistic characters they’re exposed to are basically the same, then it makes sense that they’ll assume that all autistic people are the same. That these fictional characters claim to represent all of us. And I don’t think I’m alone when I say that I’m not ok with the way that I’m being represented.

They say if you’ve met one autistic person, you’ve met one autistic person.

Stereotypes exist for a reason. It’s easier for our brains to group things together to make them easier to understand. I get that. I feel like I’m guilty of it sometimes too though. Am I stereotyping neurotypical people when I use the same scripts on all of them? When I run my Polite-Self Program, am I a bad person for not evaluating people individually? I hope not. I know that it’s impossible to never stereotype anyone, ever, and that some stereotypes are more harmful than others. I believe the majority of autistic stereotypes are harmful not only to autistic individuals and the autistic community, but to neurotypical people too, because by making assumptions about us, they miss out on interacting and connecting with us as individuals.

All this being said, I know I fit some autistic stereotypes. It doesn’t really bother me, unless people start using it to make assumptions about me. I definitely don’t like that. No one likes that.

So I guess the major question is, when does a common trait turn into a stereotype? I mean the DSM 5 A criteria requires deficits in social communication or interaction. No one’s really going to argue that autistic people have trouble with social stuff. Yet, we don’t appreciate the stereotype that all autistic people are bad at being social. Are socially awkward. Struggle with relationships. I know that I hate it when people mention that I’m good at conversion, so good, in fact, that they’d never have guessed I was autistic! I know enough social rules to know that I shouldn’t reply that that’s not a complement.

I think my problem with stereotypes like these are that people often pick an autism stereotype, and assign that as an autistic person’s main personality trait. I’d love to see an autistic character who had social deficits, but was good at mimicking neurotypical behavior. Watching them figure out scripts, constantly reminding themselves to make eye contact, and collapsing once they are home safe from the exhaustion of it all. That’s the sort of interpretation of stereotypes that interests me!

How about sarcasm? If you believe the media, not a single autistic person in this world understands it. And that is true for some autistic people. Sarcasm is hard because you have to realize the other person is saying the opposite of what they mean, fast enough to be able to pick up on the tone of voice that makes it sarcasm. Most people don’t have to think it out like that, but sarcasm is complicated! Interestingly I’ve also met autistic people like me, who struggle on some level interpreting sarcasm from others, but frequently use sarcasm themselves. Don’t worry, it confuses me too.

I think what I’m trying to say in all of this is that stereotypes suck. And when anyone uses stereotypes to represent a group of people, assumptions are made, feelings are hurt, and everyone loses out. I’m not trying to argue that all groups have something that equates to an (almost) universal experience. That’s what a group is. But I think that framing it as commonalities instead of absolutes helps people see similaries between themselves and others, and facilitates connections. Which, by the way, we can make, regardless of what the media has told you, I think that no matter what minority group a person belongs too, it should be a Right for all of us to be positively represented in our communities and in media.

So writers, directors, producers, get on it. Learn about autism from autistic people. Listen to what we want to see, and let us help you get it right. We’ve been waiting. We’re still waiting. We’re ready. Are you?

8 Most Important Special Interests

I don’t know if this list is going to be relatable for everyone. I haven’t met enough autistic people to know if they have some special interests that were more important to them than others. While the current special interests are usually the ones in the front of my mind, I acknowledge that there are some that shaped who I am.

The Roman Empire: This is kind of an odd special interest, but it’s even more odd when you’re 6. This is one of the earliest special interests I can remember, and it’s one of the most important. I dropped out of school in the first grade, and was home schooled through the rest of elementary school. Being in a classroom setting wasn’t working for me, and after a few months, I declared that I was done, I was never going to school again. The main reason I gave (besides that I was bored and that the teacher was stupid), was that none of the kids wanted to talk about what I wanted to talk about. Which makes sense now, they were 6, they wanted to talk about care bears and power rangers. The penal code of the Roman court wasn’t really on their radar. This SpIn is so important to me because if I hadn’t had it, things might have been different. I might have decided to stay in school and that would have changed everything.

The Holocaust: What 4th grader reads obsessively about the Holocaust? *points at self* this one. I was a pretty secluded kid. Home-schooled, not many friends. My world consisted of my books and my piano and my cats. The Holocaust blew my mind. I gave myself stomach aches trying to figure out how so many people, so many countries, so many governments could let something like that happen. It temporarily broke my empathy button. I had to disconnect from everything in order to keep reading. And when I realized that that exact tactic was how many Nazis were able to commit so many atrocities, I broke. But I kept reading. I still read. I can’t help myself. Even though it makes me sick, even though it gives me nightmares, trying to reconcile what I know about humanity with what happens during holocausts, or massacres, or exterminations is something I can’t turn my back on.

Star Wars: This one is more pleasant, I promise you, in fact, it might even border on heartwarming. My dad is a huge nerd, and by nature, nurture, or some combination of the two, so am I. He introduced me to Star Wars very young, and made sure that I not only appreciated the visual effects and the lightsaber battles, but the complexity of the story as well. We talked about what makes a Hero, and how people aren’t all good or all bad. He showed me the Expanded Universe novels (which have recently been un-canonized, which I have major issues with, but that’s another story.) and didn’t care when I stole his books before he got to read them. He wasn’t always the most present parent, but this was what we bonded over, and I’m so thankful that George Lucas gave me a platform for connecting with him.

Bullet Journals: Do you know what a Bullet Journal is? I didn’t until recently, and when I got interested and went looking for information, it mostly seemed like hyper organized people who had 5 hours a day to make straight lines. Now, as someone who has a decent amount of Executive Dysfunction, this was not something that seemed doable, much less enjoyable. But then I saw all the rulers and the stickers and the markers and I decided to try anyway. And it turns out, that this thing I’ve made that partially resembles a bullet journal is really helpful. It acts as a visual schedule that I can doodle on! I can keep track of my moods and my self-care, and it helps me do activities at home instead of just interneting all day. All in all this special interest has made me more independent, which is why it’s so important. And hey, I learned that I’m great at hand lettering fonts, who knew?

Autism: I think this is a pretty common one, especially for people like me who were diagnosed (or self-diagnosed) later in life. It’s like you finally had something that explained everything in your life, and you had to learn more, and more and more. And I think some of that is processing everything that’s going on in your life. I mean, I write three times a week about autism, so clearly I’m still processing it, and also, I’m still fascinated by it. Through all my research I’ve found a community that I think will shape my future. I hope, anyway.

Sondheim the Birthday Concert: This is very specific. It fills a category of special interest that nothing else has ever done. Stephen Sondheim is a composer, responsible for shows like West Side Story, Sweeney Todd, and Into the Woods. Every few years, the Broadway community throws him a giant birthday filled with performances from his body of work. I caught a rerun on PBS one day, and this 2 hour long special became my comfort show. I watch it when I’m happy, or upset, or confused. I go months watching it every day. I know the songs and the dancing and the jokes all by heart, and I never get tired of it. I don’t know why it affects me the way it does. But in a world where I often have trouble feeling safe, this PBS special is my comfort space.

Knitting: This one is going to be short and sweet. I learned how to knit in high school, after my parents got frustrated that I had taken the TV remote apart. Again. (clearly teenage me needed a Tangle). Knitting was my first real stim toy. It was something I specifically went to when I needed to use my hands for something, instead of chewing my fingers or taking apart remotes. I also discovered that can be a great tactile stim! Alpaca and silk, in particular are so so so soft! And fiber festivals are a great way to touch soft yarn, soft animals, and watch really cool demonstrations, like sheep herding dogs, and spinning wheels! (Have you ever seen a spinning wheel at work? It’s entrancing.)

Musicals: Musical have been a constant in my life. Both my parents were fans, and I’ve had a continuous special interest in musicals for as long as I can remember. Sure the specific musical changes, Annie and Oliver when I was a kid, Les Miserables and Rent as a teenager, and as an adult, Wicked, Hamilton, and Into the Woods. Needless to say, there’s always a musical soundtrack playing in our car. Besides the fact that musicals have been a special interest constant, they’ve also contributed to my understanding of other people. A lot of media types, TV and Movies especially, rely really highly on nonverbal communication. Not that I don’t enjoy them, but sometimes I get a little lost. But in musicals, if someone is happy, they sing about it! And if their heart is breaking, they sing about it! They describe every thought and every feeling out loud, and this makes the world and the characters more relatable. In fact, between the orchestral score and the relating, it’s rare than I make it through a musical without crying.

This list in particular is something I’d be interested in hearing thoughts about. Do people who aren’t me having special special interests? I’m really just curious.

Executive Dysfunction: Theme Weeks

Once upon a time, nine months ago, when my little blog was littler and newer, I put up a page called Theme Week Outlines. At the time, I was transitioning out of an Eating Disorder Intensive Outpatient Program, which kept me busy 3 hours a day, 4 days a week. I don’t do well with transitions in general, and especially ones that leave me with a sudden lack of structure. So my team and I started brainstorming ways that I could keep some semblance of structure while I moved to outpatient care. We discussed volunteering, which at that time wasn’t really doable, seeing that I wasn’t handling new situations very well at the time. We tried to plan out a very structured hour by hour schedule, sort of like what I was used to in Residential care, but it didn’t really work well with my home life. Finally, we hit on something that worked. The idea of giving each week a Theme.

And so Theme Weeks were born. After assigned the theme, I had the very enjoyable challenge of finding four activities that fit within in. An outing (which forced me to leave the house), a food (which challenged me to cook, and to try to things), a craft (which was just plain enjoyable, honestly) , and a sensory project (which can really hard, once you get past slimes and doughs and water beads. Also, most sensory tutorials out there are aimed at toddlers).

It was a little rough at the beginning. I over-planned. I overestimated my abilities. I picked recipes that were too hard, or ones that were impossible to succeed at. Remind me to tell you about my Vampire Teeth cookie debacle some time. I did eventually get into a good flow.

Very cool Theme Weeks have included Inside Out Week, Weather Week, Lego Week, Batman Week, and Knitting Week. Batman and Weather Weeks produced some very cool art, during Inside out and Knitting week we had very cool Cake Ball based recipes, and during Lego Week I put together an awesome AT-AT that now lives on my desk.

What makes Theme Weeks work for me is kind of threefold. I’ve come to find the planning really enjoyable, even if it’s turned me into a Pinterest fiend. Interestingly my Theme Weeks board gets a lot of hits! It gives me structure to my week, without forcing me to plan out every single thing that I do. So some structure, but not too much structure. It’s a delicate balance for me. Lastly, I get to spend time with my wife (because she likes these activities as much as I do) and I get to produce things that I’m proud of! Sometimes being unemployed can eat at your self esteem, but when I successfully make art that can hang on our walls, food I can share with friends, and crafts that fulfill my sensory needs, it makes me feel really good.

I would highly suggest some version of theme weeks for Executive Dysfunction. Having a small pool of activities to choose from means that I’m a lot more likely to be able to pick one. Also, after a few successful weeks, getting myself to get started on an activity is a lot easier, because I know I’ll feel good after doing it. I’ve also found that after using the Theme Weeks as training wheels for planning, I’ve been able to expand my new skills to be more successful at trying non Theme Week situations.

So give it a try! The Theme Week page is up at the top, with some descriptions, along with a PDF of the planning page I use. If you have any questions, feel free to contact me, and if you end up with any interesting Themes or Activities, I’d leave to hear!

P.S. Is it just me, or does Theme Week not look like words anymore?

6 Word Stories pt.10

So this was super busy, mostly in a good way! I got to engage a lot in not only current special interests, but a past one as well! My local Science Center does pop culture events, and this month was Buffy the Vampire Slayer, which was a hardcore special interest of mine a few years ago. Buffy did a musical episode, so they played it on the Omnimax screen and we did a sing-a-long! I also played Dungeons and Dragons this week, and started thinking about if it was possible for me to play a non-autistic character. Musings on this to come next week. Lastly I’ve been spending a lot of time with my Bullet Journal, to the point where I cramped up my hands. Needle in my hip aside, it was a good week!

 

  • Needle in hip-no clever quip.
  • It’s fun when baking projects backfire!
  • Exciting news makes me bounce!
  • Sing-a-Longs totally count as good loud.
  • Is my D&D character autistic too?
  • Should my special interest cause injuries?
  • Sometimes little kids just get it.

 

Executive Dysfunction

If you were to ask me to pick the most autistic thing about myself, it would probably be a tie between sensory issues, and executive dysfunction. Unlike the sensory stuff, which I’ve always known I experienced differently than other people, I had never heard of executive dysfunction until about two years ago, when I was pursuing a formal diagnosis. I had always thought I was lazy, and unorganized, and an A+ procrastinator until the psychologist interviewing me started asking me all of these questions about how I learned, and how I retained information, and how I motivated myself, and after about 20 more minutes worth of questions, she informed me that I exhibited signs of Executive Dysfunction. Which I promptly went home and googled, because those aren’t two words you hear together very often. After inhaling everything the Internet had to offer, I was immediately relieved. I wasn’t lazy. ‘Smart but lazy’ had basically been my go-to identity for most of my life, but I had no reservations setting it aside. After a week of basking in my new ‘not lazy’ personality, I realized that not being lazy was great, but now that I had a word for what was wrong with me, I should probably figure out what to do about it.

Oh and do something I did. Many somethings, in fact. More than would be humane to tell you about in one post. So my plan is to break it down into a few posts. The first one, you may have seen on the blog already, it’s a page called Theme Week Outlines, and it was one of the first things we tried, and it’s still going strong! I also plan to include a post of Executive Dysfunction Hacks, a post showing how I use my Bullet Journal to keep myself calm and organized, and post talking about how having 3 whiteboards for calendars, lists, and reminders is definitely not too many. I’m slowly learning how to do executive dysfunction things on my own, but I’ve got to give credit to my wife, Jess, for enduring years of questions about how she breaks things down into steps, and how she makes lists, and what do you mean she can decide she wants to do something and just do it?!

I’m hoping to spread these posts out over the next month or two, so as not to inundate you with all executive dysfunction all the time. If there is any interest, I may host a Ask An Executive Dysfunction Superstar type thing where Jess can answer all your weird and random questions. Because I swear, I have never met anyone (not even my occupational therapist!) who is more creative about this sort of problem solving. So please, come pick her brain!