The Dreaded Puzzle Piece

It’s April again which means the world is going to ignore everything we say and “Light it up Blue” and there are puzzle pieces everywhere. I’m not going to talk about Light it Up Blue. There are so many articles and blog pieces about why that movement is ableist, sexist, and just generally terrible. There’s enough out there on why Autism $peaks is a terrible organization.

Today we’re going to talk about the puzzle piece and it’s symbolism. I’m not 100% the puzzle piece is terrible but I also can’t accept it as a symbol. When I was first diagnosed the puzzle piece made sense to me. I saw it as the missing piece in my self. I didn’t know what was different about me and that diagnosis cleared up the picture. It was a piece of me that I had been missing. And I feel like a lot of Autistics can relate to that feeling of understanding after the diagnosis.

Then I learnt what it meant to the people who actually use the puzzle piece as a symbol and I got pissed. Because it was not saying that the diagnosis helped to complete my self image it was saying that I was not complete. That I’m missing a piece.

So those people can go take a long walk off a short pier. I am not incomplete. There is nothing missing from me except my patience for dealing with ignorant people. And if they don’t like me, there’s the door. I don’t need that negativity in my life.

There is no debate that the current user of the puzzle piece symbol is a horrible organization and uses the puzzle piece to generate hate. The question is, do we let them? Do we let them have the puzzle piece and keep the negative connotations or do we reclaim it? Do we say “I’m not a puzzle for you to solve” or “Autism is the missing piece and it makes the whole picture more beautiful”.

I want to take back the puzzle piece and make it the symbol of acceptance that it once was for me. I want to make it so that everyone sees the puzzle piece as a unifying symbol of love and acceptance. Because a world without Autistics is like a puzzle that’s missing a piece. You get the general idea but it looks a whole lot better with that piece.

Traveling Tips For Autistics – Getting Where You’re Going

Traveling is one of the most stressful things in the world, and that’s for anyone, but for me it’s a special kind of hell. At least once a year I get in a plane and leave my comfort zone for a week and it sucks. I’m talking panic attacks, shutdowns in random airports, panic attacks, not being able to eat because wtf is this food, the whole 9 yards.

So this year I decided that I should look up travel tips for adult autistics who have to travel, which doesn’t really exist (Note: the one that I did find was from The Madison House and uses person first language in the title only) Because clearly the only autistic people who travel are children. So here are my personal travel tips.

1. Your trip starts before you even think about packing. It starts when you’re making reservations. Think about your routine when planning your trip. When are disruptions to your routine easier to handle. For me I need to travel in the afternoon. If my morning routine is off I’m more prone to sensory overload. Plus most hotels have afternoon check-in, so arriving later means that I don’t have to wait on a hotel room. Also when making flight reservations, I always try to fly direct. Switching flights is very difficult for me, especially when traveling alone, so I avoid that whenever possible.

Also think about transportation at this point. It makes life so much easier down the road. I cannot drive to the airport. I will never have enough spoons to handle driving to the airport, going through TSA, flying, and navigating my way to the hotel. It’s too much, so I cut the only activity I can, driving to the airport. I always fly out on either a Friday or a Saturday because there is someone in my family who can drive me to the airport.

2. In the week before the trip (or however long you need to feel comfortable), firm up your transportation plans. Is the person you asked still able to give you a ride? Do you use an agency or need anything special from the airport in way of accommodations? I’ve never used any accommodations from the airport so I’m including a link to the US DOT site for air travel, that should be standard across any airport or airline in the United States.

This is also the time to start packing and planning for the week. I set calendar reminders for everything I have to do.

Exactly a week before I leave I do my laundry and meal plan for the week. Anything that would spoil while I’m traveling must go. I also make sure my brother will take care of my fish and plants.

Sunday I outfit plan, every single day before the trip will have an outfit assigned, with weather appropriate alternates available. I also bake for the week that day. Most mornings I don’t eat much besides a slice of quickbread (loaded with fruits) and some peanut butter.

Monday is for packing outfits. 2 go in my carry-on (1 casual and 1 business) and the rest in my suitcase. Tuesday I pack the make-up I’ll need for the trip because I rarely wear it. Wednesday I make lists of things I need to buy, anything left to do before the trip, and any last minute packing.

Thursday I go to the gym and work with a trainer so nothing gets done packing wise. Friday I work a half day and devote the rest of the time to self care (getting a massage and my nails done) and getting last minute things to buy together and packing them into the suitcase.

Before I leave the house I gather anything entertainment wise in my carry-on as well as chargers and medications. For me that usually looks like knitting projects, a few books (some on my phone from the Library, some physical for a used book store), any stim toys I want to bring, my annotated copy of Pride and Prejudice, 3 pairs of headphones (just in case), and containers with my usual jewelery. Also if you want to watch a show or movie during the flight download it before leaving, airport WiFi is terrible and plane WiFi is expensive.

3. Avoid caffeine if you’re sensitive to it. Tea and coffee are amazing but don’t always mix well when flying. If I drink anything besides tea lattes when I travel I’m even more of a nervous wreck then usual. As with anything your mileage may vary or you might not even have this problem but it does help me.

4. Dress in layers. Temperatures fluctuate so much in airports and planes, layers are your friend. Also it’s very helpful if you’re flying from one climate to another. When I arrive in Atlanta it is almost guaranteed that it will be 20°F warmer and humid (about a 7° change for practically everyone else in the world). If I leave that airport dressed for a New England spring (wet, muddy, can’t make up it’s mind if it’s hot or cold) I will definitely be uncomfortable. So layers are an autistic traveler’s best friend. There is less skin contact, you get to be warm and snuggly, plus you protect your personal space because people think you’re sick if you’re that bundled up.

5. Dealing with TSA. In my experience (please remember I’m a white girl from New England), TSA is one of the easier parts of flying. I arrive 2.5-3 hours before my flight leaves. I avoid any liquids in my carry-on learned from prior mistakes, trust me the last thing you want is a TSA agent who is old enough to be your grandfather finding lube packets that your friend “helpfully” added and just giving you an O.K. symbol. Yes that happened to me and yes I’m still mortified by that, so no liquids in the carry-on.

Wear ballet-flats or slip-on shoes but DO NOT forget socks. Seriously, I forget socks every year and every year I smack myself when someone says to take off my shoes because now I have to put my feet on the icky ground with nothing on them. I immediately take the socks off when I put my shoes back on because whatever is on that floor is not coming in contact with the inside of my shoe.

TSA is easy for me because there are rules. Clear dos and don’ts and it’s very structured. You can script your entire way through the airport to TSA. It’s only after TSA that people start to go off script. Which leads to:

6. Surviving the Airport, or you got through TSA now what? I always find my gate first. It decrease so much stress and then I go from there. Now is the time to whip out your head phones and get comfy (or frantically run to the gate to get on the plane if you’re running late). The easiest way to establish personal space is to put your bags in front of you in a semicircle. That guarantees at least that much space if people try to talk to you.

7. You got through the airport wait, you’re on the plane. If you’re flying Southwest you have the additional struggle of finding a seat on the plane. The next big task comes when the plane lands and you disembark. Usually there is a map of the terminal you can study/take a picture of in the back of the seat in front of you. Airports also tend to have good signage. Worst case scenario you ask for directions, airport security (any authority figure really) always freaks me out, so I always go to one of the shops, usually the convenience/quick stop ones, and ask someone who works there the quickest way to the baggage claim/where I need to be. Trust me that your question is nothing that they haven’t heard a million times, as long as you’re polite it will not stick in their mind.

8. Baggage claim is a super easy place to get sensory overload. Everyone is trying to get their things and get out fast. My advice is to wait for the crowd to go down a bit. Wrestling your way to the front to grab a bag or two and saving a few minutes really is not worth the potential overload and all that comes with it.

Things I forgot to put above and I’m now to lazy to go back and add in somewhere:

I like to wear a jacket with an inside pocket because 1. Inside pockets are amazing and 2. I’m always afraid of losing important documents (boarding pass, passport, ID ect.) and interior pockets are great for that stuff.

I’m a pressure stim person but weighted blankets and the like are not plane or wallet friendly. But compression gloves for arthritis and compression socks are relatively normal and don’t look out of place (if you care about that). I wear my compression gloves constantly and no one has ever asked me about it.

People who get a period should travel with supplies because that shit is super prone to variations when you get stressed.

Pack more than you think you’ll need because the last thing you need when traveling is a mini-crisis because something didn’t go to plan and you need to change or surprise we’re all going to dinner at a super fancy place and now you need to go shopping. It’s better to bring it with you and not need it than need it and not have it.

I’m going to war against Lobelia Sackville-Baggins and I’m going to win

Hi everyone, not a lot of updates recently I know but I’m working on a huge (for me at least) piece. Part of the reason for the lack of updates is I’m in a down swing with my depression. My daily spoons are mostly going towards keeping everything afloat and not much is left over for writing.

I’ve been feeling down for a while and I finally identified what I’m feeling. I’m tired. I’m not talking physically tired. This is an emotional tired. I’m tired of people in my life not seeing how hard I’m trying. I’m tired of putting more work into relationships that never go anywhere. I’m sick of friendships where I would move mountains when I know something isn’t right but not having that reciprocated. I’m tired of not being able to say these things.

I want to get angry, to scream at the injustices I see, but I’m too tired. It’s not apathy. I see what’s going on and I want to say something, to do something, in someway say “I agree” but there’s a voice in my head. A tiny one that says “Who cares? Who cares what you think? You’re not saying anything new so just shut up.” And that voice is Lobelia Sackville-Baggins. Not literally, it’s really my slew of mental health issues but it’s easier to fight if I give them a name and thus the voice in my head is Lobelia. Lobelia was always the worst villan to me because she was the quiet type of evil. The one who convinces you that she’s right before you realize what’s going on.

My battles with Lobelia has been going on for 9,013 days and so far it’s a draw. I have to fight in little ways. I fight with the help of my therapist and medications. When Lobelia says you can’t do this, I fight by swerving. I might not be able to get an oil change for my car but my parents can take it for me. I fight by treating myself. Every time I hear a “you don’t deserve this,” the expensive tea I order is a physical reminder that I did earn this. I earned it by fighting every day since I was born.

Some days I fight by not fighting. By giving in to the depression and staying in bed. By simply read about others fighting against their depression or doubts and it reminds me that I’m not fighting alone.

My brain is a 2 year old having a temper tantrum. If I show the slightest sign of weakening, Lobelia will use it against me. Any leftover energy gets devoted to crafting because Lobelia tells me I can’t do anything right, I’m a disappointment. That I’m a failure because I live with my parents, I work for my father. And I can’t say she’s wrong. I do live with my parents and work for my father. But I also knit and create beautiful shawls and if I can do that then she’s wrong.

Also screw the fight language. A fight is something you get into over what type of potato chips to buy. You don’t fight depression. It’s a motherfucking war and I’m winning. My armor is therapy and my weapon of choice is an antidepressant. I’m surrounded by traitorous thoughts every day. I can’t even trust my own brain but every day I do battle for my life and I win.

Right now I’m tired but I know that eventually I’ll have the energy to fight the world again, to scream this isn’t right at the top of my lungs. But for now I have to fight someone far harder to win against. I have to fight me.

“Functioning” Labels are the Worst

As an autistic, I’m labeled by how “normal” I appear. I get told things like “you’re not That autistic,” or “but you seem normal” every time I decide to tell someone that I’m autistic. These things hurt to hear as what I hear is a dismissal. That I’m not autistic enough for the person I’m talking to too take me seriously.

Functioning labels are used to invalidate our experiences. If you are “high-functioning” you clearly don’t have any problems coping in society and social settings. If you’re “low-functioning” you can’t do anything for yourself.

Let’s look at my day as an example. I wake up and go to work at an office. I make small talk with coworkers, can talk on the phone, keep track of a million different projects, and I graduated from college. So clearly I’m labeled as a high-functioning autistic by society.

But just because I can do it doesn’t mean that it’s not difficult. Every weekend I make 2 or 3 loaves of a fruit quickbread because I know I don’t have enough energy everyday to make breakfast. I’m pretty much nonverbal every morning. I’ve trained my dogs to come inside at a whistle because I need to conserve my talking energy for my work mask.

I sit all day at a desk and I’m uncomfortable 99% of the time because I can’t sit properly in my chair because the backrest is a bad sensory experience. The office is small so I’m constantly battling to keep my focus on my projects instead of every other noise in the office. I have 4 different lists going on what needs to be done and when it needs to be turned in.

Most of my interactions with other people are based on a lie. It is not a malicious lie but one I’ve kept up since I could talk and the lie is me. No one at work or in a store knows me because I don’t do those things. Everyone who meets me really is meeting my mask. A few people get to know the girl behind the mask and I’m grateful for those people.

I’m not high functioning. I’m not low functioning. I’m me and that’s all I need to be labeled as. I have days that I can only communicate through text and I have days when you can’t get me to shut up. I have days when I can’t cook and days where I knit a pair of gloves, cook dinner, and paint. I don’t need to be labeled, I need people to understand that even though I’ve been autistic for 24 years I’m still learning where my limits are. I need people to understand that some days I can’t just make a phonecall or go to work, but I can send an email or work from home. I need people to trust me to know my limits and when I go past them to understand that I don’t like that moment anymore than they do and I know the best way to recover. I just need people to trust my judgement on my health.

Mr. Darcy is Autistic

Okay this is not a new idea, but the best ideas never are. Mr. Darcy is autistic and that’s that. I may or may not have ventured into comment sections of various articles on the subject and gotten slightly mad.

When we first meet Mr. Darcy it’s at a Ball, a huge social event where he knows 4 people in the entire room. We learn that he is a gentleman with a large fortune and estate, so he is expected to have excellent manners. We then learn that he comes across as “proud and disagreeable,” which can be translated as rude, antisocial, and standoffish, traits which are often applied to autistic people in social settings. To explain his actions, he tells Bingley that it would be “a punishment” to dance with someone he doesn’t know, which speaks, in my experience, to the social anxiety typically found in Autistic individuals. I cannot stand parties with a lot of people I don’t know.

Darcy is also blunt. He says what he means. The biggest example is the first time he proposed to Elizabeth. She was incredibly insulted by his phrasing, and rightfully so, however he doesn’t understand why she is so offended. His actual response is “…disguise of every sort is my abhorrence. Nor am I ashamed of the feelings I related. They were natural and just. Could you expect me to rejoice in the inferiority of your connections?–to congratulate myself on the hope of relations, whose condition in life is so decidedly beneath my own?” This shows an incredible lack of tact an etiquette, something which he, as a gentleman, would have been taught from an early age.

The final reason he is autistic is because I said so. There is no reason that autistic people should have to justify any headcanons, after all no one expects an essay on why this character is x from an allistic person. So why do we have to explain?

Tldr: Darcy is autistic and very good at masking it. However that does not invalidate his autism.

Also thank you to Freakingoutismyok and they’re amazing post on Tumblr which is the springboard for those series of posts (this link will take you to their post).

“Suffering” From Autism

Recently I saw some BS about how people suffer from/are afflicted with autism and I just want to settle something right out of the gate. We do not suffer from autism. We suffer from non-Autistics thinking they know what we need better than we do. We are not afflicted with autism, we are afflicted by ignorant people (well-intentioned or not) ignoring our voices.

I have seen Autism compared to cancer and that really grinds my gears. Autism is not an illness, there is no drug therapy that will cure my autism and even if there was I wouldn’t want it. If you really want to compare autism to a medical issue it’s more along the lines of being born with out a limb or some fingers or toes. I didn’t wake up one day with autism. I’ve always been autistic and I always will be.

To further the analogy just like someone who was born without a limb, the world does not think to alter itself to make life easier for us. We have to find a way to cope in the world. That’s not to say that there aren’t any accommodations; there are but they are often far and few or inaccessible.

In my little corner of the world, there are no shops with sensory friendly hours. The only support groups that exist are either for parents of autistic children or for people under 17. Additionally, the youth support group is about 60 miles from where I live making it inaccessible if I had known about it when I was younger.

Autistic people do not suffer from autism, we suffer from ableism. We suffer because the world does not support us. We suffer from people who seem to think autism doesn’t exist past the age of 18. That’s why we suffer.

All Your Favs are Autistic Update

On December 19, 2018 I wrote a blog post about autistic representation and how there’s not enough positive, nonsterotypical representation of autistics in Pop Culture and I said I wasn’t going to just accept it anymore. I’ve decided to make a minimum of one post a month about a popular character and why they’re autistic. So be on the look out for the first post about everyone’s favorite romantic hero Mr. Darcy, the plan is for it to come out on the 19th of every month.

Reflections on the year

2018 was rough. Very early on in the year my grandmother passed away. The round things out the inheritances were distributed on New Years Eve. It struck me as very symbolic of my journey through the year. A door that took almost a year to open had appeared.

I had the year from hell with my mental health. I have Major Depressive Disorder, Generalized and Social Anxiety, with ADHD rounding out my little circle of bad. Most of it was medication issues, which is a tightrope walk I never want to do again but know I’ll have to.

But enough of the negative, 2018 brought some pretty awesome things too. I’ve lost 100 lbs since college. I started training with a personal trainer and I can now deadlift 115 lbs. I got a puppy who is the most amazing dog ever!!!

Meet Rocky, the love of my life and, as I joke with my mom, the only man I need. If you think he’s as adorable as I do, he has an Instagram (rocky_the_westipoo).

2018 brought incredible highs and devastating lows. I might be crazy, but I can’t wait to see what this year brings.

Autism Parents™️ vs Parents with an autistic kid

Every autistic person has a parent, some are great parents who just want to support their kid(s). This is NOT about those parents. This is about the parents who complain about how difficult it is to raise an autistic kid.

We all have heard about Autism parents and as I was going through social media I started to wonder how common they are. I got lucky with parents who mostly understood my need for a consistent routine and time alone to decompress. But I really wanted to know what makes an Autism Parent™️.

Here’s the general gist of what I found. An Autism Parent is someone who:

  1. Has an autistic child AND
  2. Believes they are special and deserve praise for raising their autistic child
  3. May or may not be anti-vaccines

It’s the second and third part that most people have a problem with (I’m not going to confer the third party of that definition today, that’s a whole separate post). If you’re a parent, you’re a parent. Just because you have an autistic kid does not mean you’re special; it’s part of the whole package. Every kid is unique and autistic kids are no exception. Do not expect praise because you’re doing your job.

That’s right I said job. It’s a parents’ job to love and support their kids. There should be no argument there. Yes it can be frustrating, what job isn’t? But that’s when you ask for help.

Now some people might be scratching their head at this point. There’s a huge difference between getting on social media and saying something to the effect of “today was so stressful, my kid had so many meltdowns, and I got through it like a champ,” and saying to the autistic community “my kid seems to be having a lot of meltdowns and I was wondering what I could do to help them.”

One makes it all about you, the other is asking people who’ve been there for advice. One makes you an Autism Parent and the other makes you a concerned parent.

All your favs are autistic…

Aka you need to reexamine your preconceived notions about autistic people.

Last month Eddie Redmayne went on the record and said what many autistic fans of Fantastic Beasts and Where to Find Them have been saying since the movie came out, that he played Newt Scamander as autistic. As an autistic person, I am ecstatic about actual, decent representation of autistics in Pop Culture, but one character is not enough.

Some may say that Sheldon Cooper from The Big Bang Theory is also an example of an autistic character. He is a stereotype. He’s an antisocial genius who doesn’t understand emotions . In short he is portrayed as a “robot” like so many autistic people are accused of being.

One positive portrayal does not erase a lifetimes worth of negatively portrayed, stereotypical autistic characters. So from here on out my stance is autistic until proven otherwise. Because we are not stereotypes. We are people you see everyday, on the train, at work, walking down the street. We exist beyond the stereotypes and beyond your preconceived notions about who we are. So do not represent us with only stereotypes, I refuse to accept stereotypical representation anymore.