The Pain Scale

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

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

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

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

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

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

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

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

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

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

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

7 Things People Don’t Know About Service Dogs

The general public sees a dog in a vest and the thought never crosses their mind about why the dog is wearing it. Up until recently, most people assumed that every vested dog was a guide dog, and that was that. It’s better now. A little better, anyway. People are a lot more educated about service animals, but the majority still can’t tell you the difference between a service dog, an emotional support animal (ESA), and a therapy dog.

These are misconceptions I’ve noticed while researching, or when talking to people about Winnie.

1. Service Dogs and ESAs Are Two Separate Things-

Emotional Support Animals have been in the media a lot lately, and as usual, it’s been making everything more confusing than less. Let me clear it up right now, there is no such thing as Service Peacocks. This is because Service Animals and Emotional Support Animals (ESA’s) are totally different things. Emotional support animals are for just that- emotional support. They help ease their owners’ anxieties and phobias, but they are not a psychiatric service animal. EAS’s are not covered by the Americans With Disabilities Act (the ADA), instead, they are covered by the FAA, if their owners are trying to bring them on planes, and the Fair Housing Act (FHA), if their owner needs to live in a place where pets are not allowed. Planes and Housing are the only places where ESA’s have rights, and to get these rights, the owner needs a letter from a doctor, and sometimes extra paperwork. *note* individual airlines are starting to crack down on ESA’s in planes, which should spark some interesting discussions.

2. Getting a Dog Doesn’t Work the Way You Might Think-

The media would have you believe that there’s only one way to get a service animal. You realize you need help, you get in touch with a charity that trains cute little puppies into perfect service dogs that are delivered right to your door for free. You bond with the dog immediately, and all of your problems are solved. This is so not how the process works. For one, service dogs are almost never free. The average cost of a dog is $20,000. And if you do find a charity that gives away dogs, their scope is very narrow. Combat Veterans. Blind People. Autistic Children (but never adults). And regardless, there are waitlists. A two-year waitlist to even be assigned a dog, plus two years of training, you might not see your service dog for years. Because of all these factors, people sometimes decide to train their own dogs.

3. Some People Train Their Own Dogs Instead of Going Through a Service-

The law says that people have the right to train their service animals. This is a huge decision. Training a service dog is a lot of work, and as someone with a disability, it’s even harder. Self-trained service dogs also wash out (which means fails as a service dog) at a much much higher rate. Self-training also doesn’t save money, which is an upsetting surprise for a lot of handlers. Dogs cost money. Food and toys and vet bills and training materials and specialized trainers and service vests. Self-training means you don’t need $20,000 right at the beginning, but over the course of the training, you’ll still be spending at least $20,000. Self-training is a decision that shouldn’t be taken lightly. I am self-training Winnie mostly because no programs who work with autistic people work with adults. I also have had dogs before, and I have Jess at home to help. I do think, after 3 months of puppy-hood, that if I get another dog when Winnie retires, I’ll be seriously considering a service.

4. Service Dogs Aren’t Required to Wear Vests-

You will always be able to recognize a service dog by its vest, right? Wrong! There is nothing in the law that requires a service dog to be identifiable in any way (this is because the Americans With Disabilities Act is really big on privacy). So why do most owners put their dog in a vest? The honest answer is that it’s easier, and by easier, I mean that if you’re in a public place with a dog who isn’t wearing a vest, people will harass you. In fact, even if they are wearing a vest, and someone decides that you don’t look “disabled enough”, they might harass you. I think we’ve all experienced “disabled enough” before here.

5. There is No State or Federal Registry For Service Dog-

You might have seen a service dog walking around with an ID or certification papers, and listen to me now when I tell you that it’s all crap. The only requirements that make a service dog a service dog is that its handler has a disability that requires an assistance dog and that the dog is trained to do tasks for the handler. The dog may be asked to leave a public space if it’s not well behaved, but that’s slightly different. So, to get down to it, service dogs cannot be certified, and asking handlers to provide paperwork or asking invasive questions isn’t legal. Any company that says that they can provide papers, or certification, or identification are just looking for money.

6. Service Dogs Aren’t Just Well Behaved, They’re Trained for Specific Tasks-

Service dogs look like the most obedient dogs in the world, and while this is true, obedience is the least of what they are trained for. The things that make service dogs more than just well-behaved pooches is the idea of tasks. Service animals are trained to do specific things. A guide dog has very different skills than a diabetic alert dog, and these skills are called tasks. Tasks break behaviors into little bits, like a guide dog can be trained to lead their handler to a specific place. Tasks are required, period. Generally, 3 is the minimum. Using Winnie as an example, she’ll be trained to do Deep Pressure Therapy, to sense when I’m getting overstimulated and lead me to a quiet area, and to interrupt my harmful body stims. This is just for me. Another autistic person might have their dog do an entirely other set of tasks. Everyone is an individual, and that’s one of the things that makes training a service dog so complicated.

7. Service Dogs Can be Any Breed, From Chihuahua to Great Dane

Picture a service dog for me. There’s a golden retriever in your mind’s eye, isn’t there? That, or a doodle of some sort. And there’s a reason for that. Labs, retrievers, and poodles are all very well suited to being services dogs, because of their temperaments and learning styles. This does not mean though that other breeds aren’t up to the job (although some breeds are more suited than others). Any breed as long as they’re smart, trainable for the handler’s needs, and polite and non-reactive can be service dogs. So, while German Shepherds make good guide dogs, smaller more portable dogs like chihuahua and Shih-Tzus might make fantastic seizure alert dogs. An informal note about this though, using a non-standard breed can and will make people pay more attention to you. It’s just a thing.

So, there was a lot of information! Do you feel smarter, or just tired? Anyway, if you’ve got questions, or you think I forgot something important, or if you think I’m just plain wrong about something, drop me a line, and let me know!

The Winnie Project

I think most of us have every intention of posting regularly, and if you’re anything like me, posting on a schedule (oh Monday and Wednesday posts how I miss you!) However, we also all know that life always finds a way to intervene. Life in this case for me is school and the puppy. But this semester you and me and this blog are in luck! I’m taking an English course that calls for a blog project. I was given the option to make a new blog or the use this one, and I thought I’d use the project do a series of posts involving media, which is something that I don’t do often.

Media, you say? What on earth could you use media for that has anything to do with autism. Or mental health. Or disability? Or anything? That brings us to my previously mentioned other life distraction: Winnie the Service dog.

It’s been 3 months since I talked about her, which seems crazy, given how she smushed herself into every corner of my life. And I’m going to be honest, this isn’t always a good thing.

I’m a cat person. I’ve always liked dogs, and while that’s still true, I think I can say with confidence that I. Don’t. Like. Puppies. Are they cute? Yes! Are they fluffy? Usually! Are they often biting little jerks? YES.

Luckily, the internet came through for me. There is a subreddit (r/puppy101, for anyone who’s interested), that introduced Jess and I to the concept of Puppy Blues, which is essentially post-puppy depression that leads you to hide from your puppy in the kitchen, crying about poop. Most new puppy parents get puppy blues, and they do eventually fade. Now, for us, eventually meant weeks and weeks, but we’re at the point where I finally like the puppy. Most of the time, anyway.

I credit training to be a huge part of the improvement in her…pleasantness.

Training has also exposed her to a lot of really important things, like having to focus around other dogs, about having to be quiet even when she doesn’t want to, and how to listen, no matter where she is or what she’s doing. She also learned enough to get her first American Kennel Club (yes, the dog show people) training certification. Guys, as of last week, Winnie is a S.T.A.R. Puppy!

And that’s not all! Breaking news reports that after an intense evaluation by a trainer, our own little Winnie-poo (and by extension, me, of course) was accepted into a local program that helps owners who are self-training service dogs. They do all sorts of training events, and gives us access to trainers who have tons of experience with service tasks, let us network with other owners and their service dogs, lets us go places where we wouldn’t have access to otherwise.

So that’s where we are right now. Thanks to this blog project, you’re going to get to hear from me a lot more, and therefore more about Winnie! Coming up will be a List Day about what people might not know about service dogs and after that a post full of pics and videos showing what Winnie’s learned so far, and how she’ll build on it in the future!

Lastly, I know I always open it up to you guys if you have any questions, or want to share your experiences, but I’d also like to ask if you’ve got any experience about being a blogger or a writer (or both!) that you’d like to share to do so!

P.S. For the duration of the Winnie Series I will be including a puppy tax- the most adorable of photos of Winnie, in hopes that the cuteness will make reading about her so much worth it.

Hearing and Saying

I don’t know where this month has gone. My life right now feels like a whirlwind.

Between spending 6 hours a week at a hospital getting saline infusions, making trips out to campus to finalize my fall semester, planning our trip to Kansas City for the Unitarian Universalist General Assembly, preparing for my in-laws’ visit in May, and starting an intense physical therapy protocol, I haven’t had time to breathe.

And breathing is important, or so I’m told.

Writing, too, has taken a set on the back burner. And it’s not like I don’t have ideas, I just can’t get them down before they fly out of my head.

So this isn’t a carefully planned and researched post about a facet of Autism. It’s not even one of my typical lists, with discussions and comparisons. No, this is a collection of the one thing that’s been sticking in my head these days: funny and/or ridiculous things I’ve said or heard recently.

“He sounded disappointed that the cat didn’t fit down the toilet?”

“Are you prepared to make your evil laugh?”

“Just because she didn’t pet you doesn’t mean you can hiss at her.”

“The bush is buzzing again. Must be April.”

“This sign is old. Irish people objected to being compared to potatoes.”

“I can’t tolerate it orally”

“Buttons makes everything a bit more formal.”

“I need you to come touch Einstein’s face. NOW.”

“What, have the hipsters ruined hats for everyone now?”

“But if we end up there, can I ride a camel?”

So here we are. It’s funny the things that come out of our mouths sometimes. I’m not an eavesdropper, but I definitely feel like I hear more of other peoples’ conversations than your average neurotypical. I like to chalk that up to hyper-hearing and a natural curiosity.

I hope that your week is filled with amusing conversations!

Three Wishes

I’m walking along the beach, looking for sea glass, and doing my best to ignore the grains of sand that have worked their way into my shoes. I see something in the distance, glinting in the sunlight, and I dash forward, hoping to find more glass for my collection. As I reach for my treasure, I realize that it is a fully intact bottle, not the rough and tumble fragments I’ve been searching for. Bottle in hand, I try to clean the sand off the bottle, when it disappears with a POOF.

In front of me stands what I can only describe as a Man/Moose hybrid, and when I manage to drag my eyes away from his massive antlers, I see him gazing at me, expectantly.

“Well, what will it be?”

I have no idea what he’s talking about. I figure if I don’t respond, he’ll explain himself.

“I don’t have all day here, you know.”

I’ve lost my words. It figures that a fantastically magical being would render me non-verbal. I cross my fingers that he understands ASL, and I sign DON’T-UNDERSTAND.

With a great huff and shake of his head, he says “Your wishes. You have three. Use them wisely. ” Under his breath, he adds “Ugh, mortals.”

Thanks to a childhood Special Interest in mythology, I know that genies are rarely benevolent. These tricksters never have your best interest in mind, and take joy in warping wishes. I know I will have to be careful.

One thing that I never understood about wishers in stories was why they never used their first wish to make sure their remaining ones were granted accurately. I tell this to the Moose Man and his eyebrows furrow.

“You would waste a wish like that? I know you, mortal, and you have too many problems to be wishing for precision. In fact, I’ll make you a deal. You use me to wish away the demons that plague you, I give you my word that I’ll stick to the spirit of the wishes.”

Demons? Can those antlers let him see something that I can’t? Am I infested? I feel itchy just thinking about it.

Before I make any decisions, I definitely need to know what he means by “demons.” Again I sign DON’T-UNDERSTAND.

“Your brain, it is different from those of other humans. It causes you pain from your senses, confusion from social interactions, and despair from living a world that is not meant for you. I can use your wishes to take all of that away- why would you wish for anything else?”

I am stunned. Does he not realize that by taking away the bad, he would take away the good as well? Yes, I experience sensory hell, but there is sensory heaven in my world too. The joy from my special interests outweighs the struggles I have with things like socialization and executive dysfunction. And most importantly, changing how my brain works would change who I am. Who would wish for that?

I have to think carefully about my wishes. They need to be so clear that he can’t warp them, and they have to benefit not only me but everyone in my community.

He paces and glares while I take my time, but eventually, I am happy with my choices. I turn back to him and say:

“I like who I am, and would never risk changing that. Here are my wishes, and I hope they reflect that.”

  1. I wish to be included in my own Advocacy. I know myself best. I know my needs and struggles, and I need to be considered an expert in the field of myself. We will never make progress unless we give precedence to the voices of personal experience.
  2. I wish for Accessibility. Many of the problems that I experience could be easily resolved by people willing to meet me in the middle. All people with disabilities would be able to accomplish more if more of an effort were made to see weaknesses and then find solutions to balance them out. It’s possible, and more of an effort needs to be made.
  3. Lastly, I wish for Acceptance. Everyone deserves to be respected for who they are, and no matter what their abilities are. I don’t want people to make pity-eyes at me, and I don’t want people to think that the way my brain works is a tragedy. I am who I am.

He looks and me solemnly, and after a few moments replies “As you wish.”

All around me, lights swirl around me, and when I’m practically surrounded, I hear another great POOF and

I wake up in my bed. Half asleep and bleary-eyed, I try to remember the Moose Man, but all I can recall is his ignorance and his massive antlers.

4 Reasons There’s No Post Today

I’ve been having a tough week, health-wise (see Monday’s missing post as an example), but I figured I could leave you with a short bit of dark humor

1. I think my head might explode: I have the headache from hell, and since it’s in my neck too, I’m having a hard time convincing my anxiety that it’s not meningitis. Also, my cat Spike is a mother hen when I don’t feel good. It’s sweet, except that he’s 18 pounds and he insists on constantly touching my face.

2. I keep falling asleep: And not just in inappropriate ways like when I’m laying down. Sitting up is fair game too. You know the warning they put on NyQuil about not operating heavy machinery? I need that on me.

3. The world is spinning: Since I started physical therapy a few weeks ago, my POTS has been in a consistent flare. It’s depressing that 7 minutes of laying down exercise can affect me this badly. I’m eating tons of salt, like the experts recommend, but my I can’t really feel my face anymore…

4. My hands are shaking: Another POTS symptom, it’s because my blood sugar is all over the place. My body goes into full-on trembling shaky sweaty rebellion if I don’t eat exactly every 3 hours. I never thought my pancreas could hold me hostage, but here we are. Who knows, maybe next week my spleen will demand $10000 in unmarked bills.

Thanks for stopping by, and I hope your bodies feel better than mine.

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 are 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)!

And a Meltdown in a Pear Tree

Merry Christmas Everyone! Or for anyone that doesn’t celebrate Christmas, Happy Belated Hanukah,  late Solstice, early Kwanza, and a Very Happy December 25th!

I think no matter what you celebrate, The 12 Days of Christmas carol is probably something that you’ve heard. The math has been done, and to purchase all 12 days of gifts would cost you almost $35,000!

I’ve replaced the drummers, pipers, lords and ladies, the maids, the swans, and the geese, the gold rings, the calling birds, French hens, turtle doves, and the partridge with things that are a little more relatable!

So I present to you-

The Twelve Days of Autism 

On the First day of Christmas, Autism gave to me, A meltdown in a pear tree

On the Second day of Christmas, Autism gave to me, two info-dumps, and a meltdown in a pear tree

On the Third day of Christmas, Autism gave to me, three routines, two info-dumps, and a meltdown in a pear tree

On the Fourth day of Christmas, Autism gave to me, four social rules, three routines, two info-dumps, and a meltdown in a pear tree

On the Fifth day of Christmas, Autism gave to me, five same-foods. four social rules, three routines, two info-dumps, and a meltdown in a pear tree

On the Sixth day of Christmas, Autism gave to me, six different stim toys, five same-foods, four social rules, three routines, two info-dumps, and a meltdown in a pear tree

On the Seventh day of Christmas, Autism gave to me, seven special interests, six different stim toys, five same-foods, four social rules, three routines, two info-dumps, and a meltdown in a pear tree

On the Eighth day of Christmas, Autism gave to me, eight kinds of chewelry, seven special interests, six different stim toys, five same-foods, four social rules, three routines, two info-dumps, and a meltdown in a pear tree

On the Ninth day of Christmas, Autism gave to me, nine ear defenders, eight kinds of chewelry, seven special interests, six different stim toys, five same-foods, four social rules, three routines, two info-dumps, and a meltdown in a pear tree

On the Tenth day of Christmas, Autism gave to me, ten tag-less t-shirts, nine ear defenders, eight kinds of chewelry, seven special interests, six different stim toys, five same-foods, four social rules three routines, two info-dumps, and a meltdown in a pear tree

On the Eleventh day of Christmas, Autism gave to me, eleven hands a flapping, Ten tag-less t-shirts, nine ear defenders, eight kinds of chewelry, seven special interests, six different stim toys, five same-foods, four social rules, three routines, two info-dumps, and a meltdown in a pear tree

On the Twelfth day of Christmas, Autism gave to me,  Twelve weighted blankets, Eleven hands a flapping, Ten tag-less t-shirts, Nine ear defenders, Eight kinds of chewelry, Seven special interests, Six different stim toys, Five same-foods, Four social rules, Three routines, Two info-dumps, And a meltdown in a pear tree.

Happy Winter Holidays everyone, I hope you’re relaxing, eating good food, and enjoying time with people that make you happy.

Now I Know 30 Things

I turn 30 today, and for the past few months, I’ve been feeling really anxious about it. I get caught in this spiral of feeling like because of mental health reasons, chronic illness, and autism, I’ve wasted my twenties. Lately though, I’m more in the mindset that I’m just a late bloomer. I’ve got a lot of life left in me, and I plan to do great things with it! But the most important part of this whole thing is, because I’m 30, I now know 30 things. And if you don’t mind, I’d like to share them with you.

  1. Trapping bugs under a cup instead of killing them is good. But if you’re not going to take them outside right away, for the love of God, tape the cup down. They can escape.
  2. Doing the right thing sometimes doesn’t feel like the right thing. That doesn’t mean that you should stop.
  3. Hydrogen Peroxide can get dried blood out of almost anything. Do with that what you may. Not murder.
  4. Whatever amount of garlic a recipe calls for, double it.
  5. Just because an emotion you’re feeling is negative, doesn’t mean that it’s bad.
  6. Always keep a snow shovel in the trunk of your car, in case there’s a freak storm and you need to dig yourself out.
  7. The key to never having to talk to telemarketers is googling any number that you don’t recognize, and if it’s not important, ignoring it.
  8. Don’t meow back at cats, it just encourages them.
  9. If you like something about someone, be it their hair or their shoes or their sense of humor, tell them. It’s good for both of your souls.
  10. Self-care is whatever makes you feel calm and safe, so don’t let anyone tell you how to care for yourself.
  11. The key to not being embarrassed is realizing that 97% of the time, people are too busy thinking about themselves to notice you.
  12. Most DIY projects are expensive. If your goal is to have fun and get messy, awesome, go for it! But if you’re trying to save money, do the math first.
  13. You can write on mirrors with dry erase markers, which is way more convenient than writing notes on your hand. Also, there’s less risk of accidentally washing away important information.
  14. If you have weird medical symptoms, Google with care. The internet is almost definitely lying to you. You do not have cancer.
  15. Superglue is a necessary evil, and it is inevitable that at some point, you will glue your fingers together. Luckily acetone, which is found in most nail polish removers, will un-stick them quickly.
  16. Finding used books that are written in is like finding treasure. Seeing other peoples’ notes, the parts they loved, the parts that confused them, the parts they disagreed with- it’s like reading through someone else’s eyes.
  17. If someone criticizes you in a non-constructive way, meaning they aren’t giving you realistic advice on how to improve, that’s not criticism, it’s an attack. Feel free to fart in their general direction. Or just ignore them, I guess, that works too.
  18. If someone is tailgating you, as long as you’re going the speed limit, there’s no point in speeding up. It won’t help, and you’ll be the one pulled over for speeding, not them.
  19. Don’t talk down to kids, they’re smart little cookies, and they understand more than you think. Also, they’ll rule over us all in about 40 years.
  20. If you’re looking for a masculine haircut, go to a barber instead of a hairdresser. They’ll get the lines right, plus it’s way cheaper.
  21. The snooze button is not your friend. It’s too easy to forget how many times you’ve hit it, plus, you’re not getting any quality sleep between alarms.
  22. Chopping chile peppers is a threat to your mucous membranes. Wash your hands immediately and always remember that, in an emergency, milk works better than water.
  23. You can get heatstroke without a sunburn, especially if you are 8 and at Disney World. Signs and symptoms include dizziness, headache, and vomiting, and if you suddenly stop sweating, it’s time to find some help.
  24. Because humanity is largely social, people generally want to help each other. This means you’ll have much better luck getting someone to do something if you phrase it as needing help, instead of as a demand.
  25. Most Dollar Stores sell the same candy you’d get at the movie theatre for a dollar. You’re welcome.
  26. There are other pronouns besides He and She. Gender non-conforming people also use pronouns like They, Ey, Zir. You’d think with all these options I’d have less trouble picking one…
  27. When you start a new medication, always check if it interacts with anything else you’re taking or eating or drinking because doctors are notoriously bad about catching uncommon interactions.
  28. We all over-salt recipes sometimes, whether our hands slipped, or we got distracted by the dog outside our window and forgot that we’d already added it. Luckily, anything liquidy can be saved by sticking a raw potato in there for about 10 minutes.
  29. Turning your computer off and on again isn’t always the right answer. Sometimes getting another person close enough so your computer knows you’ll look incompetent if starts working again is just as good.
  30. You’re not wasting your life. You’re not wasting your life. You’re not wasting your life.

Judgeypants

Anyone who knows me well will tell you that I’m a bit judgy. Not in a bad way, I don’t judge peoples’ character- just their actions. These days at least. I will fully admit that as a child, I was pretty terrible. And it all comes down to one thing: Theory of mind.

This topic is one that that comes up a lot in the Autism discussion and tends to be highly debated. Some professionals believe that Autistic people don’t have it at all, while others argue that it, like many other autism symptoms, exists on a spectrum. This is what I’m inclined to believe as well.

The way Theory of Mind is explained is when someone has Theory of Mind, they know that other people have thoughts and feeling different than their own. So, just because I’m feeling sad, doesn’t mean the person next to me is also sad. Neurotypical children develop this skill at about four years old, and oh boy can I tell you, I definitely did not know anything like this when I was four. Or five. Or ten or twenty.

Let’s just call me what I was- a judgeypants. I judged everything everyone did, mostly because they were doing things that I didn’t like. Let’s just pop into my kindergarten-aged brain for a moment. At that age, I despised bananas. I still do, but that’s not the point. So if someone’s eating a banana next to me, I’m disgusted. I can see the texture, I can smell that pungent banana smell, and I feel one thing. Hate. My heart is bursting with banana hate, but my brain, however, is beginning to judge. Bananas are terrible. Why would this person eat something that they hated so much? This was a question that I couldn’t answer, and it brought forth the judgments.

Do you see where I went wrong? It’s pretty obvious now, but back then, it never crossed my mind that someone could have different opinions than me. So what was I supposed to think? The way I was observing the world, people kept doing things they hated, eating things they hated, and the worst part, they didn’t even have the gall to act like they hated it! Or so I felt. That was all intertwined at that point.

Embarrassingly, no one challenged me on the difference between My feelings and Their feelings until I was in my twenties. I use the word challenged because the idea had been mentioned before, but I had elected to ignore it because it confused me. Which is pretty much how I dealt with things up through my mid-twenties. I don’t suggest it.

For me, even thinking about Theory of Mind related things kind of hurts my brain. Logically, I know that everyone’s brain’s work differently, and that my thoughts are unique to me, but it takes me that extra step to get to that knowledge. I regularly have to remind myself to remember what the other person might be thinking. And at first, I had to do this every time I talked to someone. Anytime one of us expressed a feeling or an opinion, I had to say “Self, don’t forget that they’re their own person.” Every. Single. Time. Thank goodness, if you do this long enough, it becomes pretty automatic, and on top of that, you start being able to recognize that feeling, that internal judgeypants feeling bubbling up and you’re able to respond to it before it becomes an external judgeypants situation.

There’s an activity that tests for Theory of Mind, called the Sally-Ann Test, if you want to look it up, and it is the most frustrating thing in the world for me. I’ve taken it on my own, and with a psychologist, and even though I know what the right answer is, I can’t stop my brain from picking the wrong one. I know the answer! How dare my brain make me wrong! I suppose that shows the strength of Theory of Mind; even when you’re right, you’re wrong.

I feel like most professionals look at Theory of Mind as an interesting tidbit of Autism, and they don’t acknowledge the huge effect that it has on social abilities. Children especially use play to practice social skills, and knowing that other people think and feel differently than you is like the number one social skill. It’s a skill that gets more important the older you get, at least in my experience. One thing I’ve realized about myself is that I am very intolerant people feeling differently than me. Not so much in a difference of opinion, but if I’m angry and no one else around me is, it makes me almost irrationally upset, because I spent the first twenty-some-odd years of my life assuming that everyone felt like I did.

While it’s hard to keep myself from having that immediate reaction, I’ve gotten much better at not letting it alter my actions. I do this by drawing on my innately curious nature and challenge myself every time to tell myself a story about what they might be thinking. Of why they might be thinking that. Using one of my favorite autism coping skills, “Turn It Into A Puzzle”, I not only get to practice thinking about other peoples’ internal processes, but I also get to explore why I’m feeling what I’m feeling.

So, am I still a judgeypants? It could be said that since I’m able to recognize and quickly shut down my judgments, that I have shed my judgy ways. But I think I would argue otherwise. My argument would that judgment is not inherently harmful, and that used correctly, can even be a positive. I see my judgeypants status as making a good thing out of a not so good thing. Which in my experience, is what being autistic is all about. So I’ll shout it from a mountain top. I’m Curious. I’m Autistic. And I. Am. JUDGEYPANTS.