8 Favorite Quotes About Autism

If you interact at all with social media, you’ll know that quotes are everywhere. They’re usually posted on top of images on mountains or sunsets, and are more often than not credited to ‘anonymous’. Not to say there aren’t some good quotes out there, especially ones that describe experiences, instead of forcing vague positivity on the reader. It can be hard to sort through Autism quotes, because a large percentage of them are made about Autistic children by Neurotypical adults. These often border on inspiration porn- and they infuriate me.

So, in order to combat these, I’d like to share some quotes about Autism that I enjoy.

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So here they are! If I had to pick one, I think that the square peg one is my favorite, but there’s so many quotes out there, that I’ve probably missed some great ones! So, dear readers, if you’ve got a quote you love, let me know (especially if they’re funny, what can I say, I’ve got a weakness)!

7 Essential Stim Toys

I’ve been stimming for 29 years, and for the first 28 of them, all my stim toys were improvised. I bit my nails, I chewed on paperclips, I’d dismantle anything that came apart, I made every sheet of paper I encountered into Origami; I even learned how to solve a Rubik’s cube, just so I could fiddle with it. These days I have toys that are actually made to fiddle with. I think I drained my entire bank account when I discovered Stimtastic! I have a large collection, mostly because I use different toys for different situations. So I present to you, my Essential Stim Toys!

1. Trivet Keychain: This was a DIY project, and one of the first things that I ever posted on Tumblr. It’s just a silicone trivet that I cut into strips and put on a keychain. The texture is satisfying to rub and squish, plus, you can suction your fingers into the hexagons. It’s a really cool feeling!

2. Tangle– I keep Tangles in all of my pockets, mostly because they’re quiet, and I can use them with one hand. They’re not something I use every day, but they serve a very specific purpose.

3. Rubik’s Cube: Don’t let anyone tell you that you need to be able to solve a Cube to be able to play with them. With their bright colors and moving parts, they’re very satisfying to fiddle with. Also, don’t let anyone tell you that solving a Rubik’s Cube is impossible- it’s a very linear process that’s easy to memorize, until muscle memory kicks in. YouTube is a great resource!

4. Squishies: These also come everywhere with me, but unlike the Tangles, I’m constantly using them. I have them in a variety of sizes and textures, and I love them all. There’s just something about them that are very soothing, and goodness knows I need that.

5. Howie: The one on the left is Howie. I got him from Target’s discount bin, mostly because he was soft. I didn’t think he could get much better than that, but I decided to do an experiment and de-stuff him, and then fill him with flax seed. Now he’s weighted, and he can be heated up in the microwave. He’s my couch buddy and I love him. Unfortunately so do my cats, so sometimes I have to share.

6. Spinner: I will fight anyone who says Fidget Spinners are just toys, just for kids, or just a fad. Fidget spinners, especially metal ones, have a weight unlike anything else. And shifting that weight from hand to hand really helps me focus.

7. Marble Maze: My marble maze is always in my pocket. The one I have is made of flannel, and the more I use it, the softer it gets! It also has foxes on it, which is always a plus. The combination between the softness of the fabric, and the kinetic motion of the marble makes it that much more satisfying, and even better, it covers more stim needs.

There we are, all of my essential Stim Toys! These, plus other sensory tool are what make up my Toolbeast, so I can function at my best when I’m out of the house.

Do you have any favorite Stim Toys? Have you found an awesome improvised Stim Toy? Favorite Store? Cool new DIY? I’m always looking for new sources of stim, so let me know!

All Hail the Mighty Toolbeast

Behold, the mighty Toolbeast, my faithful companion, my sensory savior, I would be lost without it. You may look at it and think to yourself “Self, that looks an awful lot like a monster shaped pencil case.” And you would be right. Its primary purpose may have been to hold school supplies, but it’s been elevated to so much more than that.

This is my AutistiKit, also known as a Toolbeast. It comes everywhere with me, because I never know when I’ll need one of its components. And need them I do. Over the past year or so I’ve done tons of field research, figuring out what I need to keep myself comfortable and meltdown free when I’m in unpredictable situations.

My collection at this point is almost entirely sensory based, because that’s usually what can tip me over the edge and into meltdown territory. And even if I don’t have a meltdown, sensory overload isn’t exactly comfortable, is it? I’m at a point in my life now where I can recognize pretty early on when things are starting to go bad, and by intervening early, I keep myself well balanced, which in turn, lets me do things I wouldn’t otherwise be able to do.

These are the essential contents of my Toolbeast, grouped by sense:

 Touch

*Wipes: I don’t tolerate my hands being sticky or messy, so unscented baby wipes are key if I’m going to outside, or eating.

*Thinking Putty: I keep a tiny tin of putty with me, because I can push it or rip it, which helps me not to unconsciously using Self Injurious Behaviors.

*Koosh Ball: The spiky hairs are satisfying to pull at, it’s my most active tool because it can be tossed around.

*Squishy Caterpillar: This was one of my first Stim Toys, and it’s still one of my favorites. I can’t describe why it’s so good, but I’m constantly reaching for it.

*Tangle: I can use this with one hand, and in my pocket, so it’s stealthy.

Smell

*Essential Oil Roller: I have had the awesome experience of blending my own scent, which is Sandalwood based. Smell keeps me grounds more than anything else, and I like that the roller means the oil won’t get on my hands.

Taste

*Pink Starbursts: Pink Starbursts are the only ones that I like, but the strong taste is grounding, and they also provide a little blood sugar bump, which I can always use.

Hearing

*Earplugs: Of all my senses, my hearing is the most sensitive, so something being too loud becomes a big problem really fast. Mine are rated up to 30 decibels, which even lets me go to concerts.

Sight

*Blue Light Glasses: These are generally made for people who spend a lot of time in front of a computer screen, but they’re perfect for toning down fluorescent lights, which many stores are so fond of.

Miscellaneous

*Instant Cold Pack: I discovered these when I was in Treatment, and they are amazing. They’re shelf stable until you stomp on them, and then they get cold. Putting one on my neck or chest is like magic; they’re incredibly soothing.

*Chewy Toy: I wear chewelry whenever I leave the house, but it’s pretty soft, so I keep a heavy duty one in the Toolbeast in case I need to do some hardcore chewing.

So that’s my Toolbeast. It’s been a lifesaver, and I highly suggest that everyone give them a try. Just think of the things that help you the most, in as many sensory categories as you need, and if they’re not quite portable, if they come in a mini version, or can be easily replaced with something smaller. Pencil cases make great AutistiKits, and they come in lots of fun varieties. They’re small enough to fit in a purse or a backpack, and so easy to personalize. Why not give it a shot?

Out of Order

Time is not real

It’s just our floppy brains trying to make sense of the world

We want to think that our lives are linear

But Autism has proven that my life is out of order.

 

Atoms don’t care which way time flow

They act the same no matter the direction

I, unfortunately, am not the same

And it’s clear you see, that my soul is moving backwards

 

As a child I was interested in talking to adults

I found my peers unpredictable and boring

As an adult I still think my peers are boring and unpredictable

I haven’t grown much

 

As a child I liked adult stuff

Like nonfiction books about Ancient Rome and WWII

As an adult I like things made for kids

Who says I can’t love cartoons and board games?

 

I don’t know why Autism is fighting the flow of time

Or why the older I get the younger I seem

People say that age is just a number

I wonder if this is what they mean.

 

 

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?

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.