6 Word Stories pt.22

This week has been wracked with anxiety, and I’m trying to weather the storm. It’s made writing more difficult, as I’ve lost every bit of confidence that I have, so even if I can start something, I find myself deleting it immediately because to me, it all reads like crap. I’m trying to change up my strategy a bit, writing more from that heart, about experiences I’m having as they come. We’ll see how that goes. Other news is that I had my first infusion using my port. The whole thing went pear shaped and I ended up having a meltdown at the infusion center, but I’m hoping things will get easier. On the bright side, my stitches have healed, and the port has stopped hurting, although it does itch like crazy. I’m thinking that will go away soon too.

 

  • Why am I in the kitchen?
  • Knit purl, knit purl, soothing stitches.
  • Important Announcement: New Special Interest Acquired!
  • Too many books- not a problem.
  • Dear strangers: please don’t touch me.
  • I’ve decided that bras aren’t necessary.
  • Can’t handle this friendship falling apart.

Hope everyone is having a good week, and I hope it’s as warm wherever you are as it is here!

6 Word Stories pt.21

Surgery was successful! Do you know what this means? I’ll shut up about hospitals and doctors and incisions for a whole month!! Which is when my next surgery is…Anyway, I was able to predict most of the autism related surgery issues, like smelly funny from antibacterial soap, and the itchiness of the bandages, but the one thing I’ve struggled with most is that I’m exhausted and drugged, but my brain is bored. And bored autistic brain is the worst.

  • Betadine gives me Oompa Loompa skin
  • Which is worse, infection or showering?
  • I discovered a new favorite food!
  • You can’t write with no words
  • Too tired to read, what now?
  • Making good slime is so rewarding
  • Why are some relationships so complicated?

That’s all for today folks, I’m off to take another nap.

6 Word Stories pt. 17

So as you might have guessed, the saga to figure what’s causing me so much trouble with my hip continues. My doctor is confident that it’s some sort of nerve issue, but we can’t seem to figure out what’s wrong. I have an appointment with a nerve surgeon next week, and while I’m not excited about the idea of surgery, if it will help the pain, I’m open to it.

  • More doctors, less answer. In pain.
  • Reading is my break from life.
  • Friends who get it are irreplaceable.
  • Does anyone find positive feedback overwhelming?
  • Singing Christmas Carols is so stimmy!
  • Board games make great special interests.
  • I find celebrating my birthday uncomfortable.

My birthday is coming up next week (check back on Monday for a Very Special Birthday Post!), and I’m never sure how to feel about it. I’m generally uncomfortable with celebrating it, because I don’t like being the center of attention, but since it’s the big 3-0, I decided to have some fun with some close friends. I’m trying to stay open, but I’ll let you know how it goes next week!

Theory of Gifts

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

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

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

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

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

 

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.

 

A Cloak of Many Layers

A Cloak of Many Layers

Everyone wears a cloak. It is a necessary skill to survive in our society. ‘What do you mean I’m cloaked?’ you say. ‘I’m the most genuine person I know!’ I’m sure that’s true, but tell me honestly, last week at the grocery store, when the cashier asked how you were doing, did you tell her that you were running on 3 hours on sleep and had run out of coffee, or did you say you were fine? I understand why people do this sort of thing. They say they’re just being polite, but the real answer is that they’re more concerned about society running smoothly than they are about making connections. I have very little patience for this. If someone asks how I’m doing, I tell them. I have to pee. I’m too hot. I’m exhausted, thank you for asking. This is partially because my brain compels me to take words at face value, instead of how they’re intended. The other part of it is that cloaking myself requires huge amounts of energy, so I only do if for things that I deem important. And trying to figure out if the receptionist at my doctor’s office ACTUALLY wants to know how I am, or if they’re just being polite, is not important.

I also think that we all have different levels of cloaking. The difference between telling someone you’re fine when you’re not, telling your neighbor how much you loved his cookies, even though they were burned, these are minor level cloaking. They may fall under what people call a white lie. Doing this doesn’t take much energy for most people, and there’s very little chance anyone is going to get hurt. Then you move up to mid-level cloaking, pretending you know how to do something at work when you don’t. You forgot a baggie and you dog poops in the neighbor’s yard, and you ignore it even though you’re a good person. These sorts of cloaks could get you in some trouble, but people do them every day anyway. They hide parts of their personalities to make their day smoother, even if they might be consequences. These things are common, and potentially harmful, but they’re nothing like the ultimate cloak. These are the blackout curtains of cloaks. Pretending your drink is a rum and coke instead of just a coke because none of your work friends know you’re sober. Convincing a friend to go with you as your ‘date’ to the family Thanksgiving with you so Aunt Susan won’t tease you about being a lesbian, especially because she doesn’t know that you are one. This sort of cloak is incredibly harmful. It damages your relationships and it makes your life a lie. There are reasons for these cloaks. We wouldn’t use them if they weren’t helpful. But helpful doesn’t mean healthy.

I’m not claiming that I don’t use cloaks. Scripting is a cloak, I’m saying what I’ve memorized instead of what I mean. So is mirroring. Instead of using my own flappy, rocky, twirly body language, I just mimic someone else’s. I look at the bridge of someone’s nose approximately once every 12 seconds, so they think I’m making eye contact. And I follow their topic of conversation, even though I’ve been bored since the first minute. Once someone goes from acquaintance to friend, I drop off a layer of cloaks. There are benefits and disadvantages for both of us. I get harder for them to read, because my body language and facial expressions and eye contacts aren’t natural for them anymore. But they gain my enthusiasm when we talk about things that interest me. I get more energy since I’m not busy cloaking, and I actually get to connect with people that I like. Downside for me is since they’re having trouble reading me, their responses are less predictable. Which is an acceptable consequence. I think at least parts of this experience are universal, just like cloaks. People act differently with their family than their friends, their friends from their coworkers, their coworkers from strangers. And I’m not trying to convince anyone that cloaks are bad. They’re necessary. But what I do think is that being aware of the cloaks that you wear, and maybe being willing to step outside of your comfort cloaks, may lead you to experiences and connects that positively affect your life. Why not, right?

6 Word Stories pt.8

When I wrote a lot of these stories, I was having a really terrible week. (I’m slightly ahead on these, so they’re coming to you about a week late). Navigating relationships are hard enough when you’re autistic, that when a disagreement turns into a fight, there are no scripts to use. Especially when you’re feeling angry and betrayed. I don’t know if this friendship can be saved or not, there’s no previous experience for me to pull from. I guess I’ll just have to wait and see.

  • Hanging out tomorrow, I’m already anxious
  • Plans cancelled. Change sucks, still relieved.
  • I wish I handled stress better.
  • Feeling so betrayed by ableist friend.
  • Why aren’t there guidelines for boundaries?
  • Marriage perks: really great pressure hugs!
  • Committee meetings make me feel dumb.