Autism Acceptance: Allies

I’ve been “out” to my friends for about a year. Those same friends who have been with me for longer than that knew my son was autistic, or likely autistic. Since then, I’ve had many friends, old and new, come to me asking for information pertaining to autism.

I made myself an open book to them, because what better way to learn about autism than an autistic person? I’m often tagged in posts, privately messaged, sent pictures with question marks on them,  etc. And this makes me extremely happy that my friends care enough to ask me how they can be better allies to the autistic community, because that means there’s one more person in my corner when things get tough.

Most of my friends have started realizing that disability rights are intrinsically intertwined with basically every other movement. A lot of my friends are physically disabled and already knew to include cognitive disabilities in their activism. Some have auto-immune disorders, are in wheelchairs, or can’t perform basic functions without a great deal of help. In other words, their lives are full enough with their own bodies and their own rights, but fit my activism in with their own, and I’m grateful. But most of my friends are able-bodied allistic people who benefit from the current system.

I want to encourage allies to be more like my friends. My friends do not speak over me, but allow me to speak for myself. They trust an actually autistic person to speak for themselves and stay in their lane. They do not presume to speak for me. They cite sources from actually autistic people, not just myself, check their sources, and are careful to stay away from organizations that push for cures and do not focus on adults.

My friends listen and learn. I absolutely encourage questions on why certain organizations are considered bad, the difference between eugenics and being unable to care for a certain type of child, what they can do when they see someone stimming, etc. A lot of my friends are busy with their own lives and movements and can only focus on one aspect at a time(a concept I’m absolutely familiar with, believe me) but still want to make sure that they’re being a respectful as possible.

And that is absolutely the difference between an ally and an “ally.” The ability to listen and learn, and engage respectfully. I am so proud to call my friends allies.

Autism Acceptance: The “Idiot” and the Savant

Disclaimer for my fellow autistics: I apologize for using the word idiot. It’s to make a point about tropes. I have been called an idiot by family members and co-workers and managers and I know it hurts, but for the purpose of education, I am titling this post about autistic tropes this way.

If you’ve ever watched television, you’ve noticed there are two types of autistic people that are mostly represented. The (usually) white male, asexual savant who doesn’t pick up social cues in hilarious ways(looking at you, Sheldon Cooper and every incarnation of Sherlock Holmes) and the (also usually) white, male, nonverbal autistic who can’t stand to be touched and needs help with super basic things like eating, dressing, etc.

I’m not saying these types of autistic people don’t exist, I’m saying there are other types of us out there. And to top it off, these types are usually grossly misrepresented. Savant types are are autistic-coded, but writers claim they aren’t actually autistic. Only the nonverbal, perceived helpless types are blatantly said as being autistic.

Lets start with the “Idiot” trope, and why it’s problematic.

The Problem:

Usually these types of autistics are described as “trapped, unable to communicate, have no idea what’s going on around them,” when it has been proved via alternative communication methods that autistics and other disabled people CAN communicate, and ARE aware of their surroundings. I personally speak with, via the internet, several completely nonverbal autistics, autistics who use chairs, not to mention the literature out there written by these supposedly braindead, unfeeling, oblivious people.

This trope is why assumed competence is so important in the disability movement. When you ignore alternative communication methods, you’re spitting in the face of the individuals who use them. All forms of communication are valid. ASL, echolalia, texting, verbally speaking, using a device to say the words for you, etc. Taking away a person’s voice just because you don’t agree with how they’re communicating does not make you a good person. You are not doing them a favor. You are a terrible person if you do this.

Possible Solution:

A step in the right direction would be to have more autistic and other disabled characters communicating via the mentioned methods. Signing, text to speech apps, echolalia, etc are great(and actually easy) ways to portray a nonverbal person onscreen. In books, every way I mentioned is good.

The Savant:

Earlier I mentioned Sheldon Cooper and Sherlock Holmes as autistic-coded characters that are not mentioned to be autistic. These two specific ones are headcanoned(meaning assigned a specific trait by fans) as autistic not just by autistic people who relate, but also allistic fans of the shows. There are other characters that are coded as savants in smaller ways, but since I personally don’t enjoy television much and would rather give you examples of things I have personally seen, I cannot name any others.

The Problem:

You might be thinking, “What’s the issue with having super smart people be autistic? Isn’t that good representation?”

Well, you’re both wrong and right. We like seeing ourselves onscreen. However, When 98% of the jokes are at the expense of the “autistic, yet not autistic” characters, it gets much less funny. Especially for a group of people that have a high rate of suicide, higher chances of being sexually and physically abused, low employment rates due to ableism, and a higher chance of being murdered by parents.

Another issue with this trope is the “What are feelings???” part of the trope. Autistic people DO feel empathy, however, we often have issues applying it to the current situation. There’s also a misunderstanding as to what empathy actually is. Empathy is “I feel what you feel/what I think you feel physically.” Compassion is what people are actually talking about. Compassion is identifying that a person is upset and working to alleviate their bad feelings. A lot of autistic people I know practice compassion, but in a way that is deemed rude by allistics. Subject changes don’t mean they don’t care. It means they’re either uncomfortable with dealing with the emotions you’re displaying, or think a different discussion is a great way to get your mind off of it.

 

There’s so much wrong with this trope, I can’t even address them all right now(denial of applied compassion and empathy, denial of POC representation as well as using mostly strictly white, cisgendered men and refusing to use the word autistic, using autism interchangeably with psychosis[which a mental illness that gets enough flak, and is an entirely different post on why they’re also grossly misrepresented, don’t even get me started])

Possible Solution:

Stop it. Take ten steps back, scrap the character, and go read articles, blog posts, and experiences of actually autistic people. Ask for input from those exact people. We already have five hundred renditions of The Savant Who is Autistic But Not, so why not do it correctly? Or better yet, let US write about it?

In conclusion:

Stop that.

 

 

 

 

 

 

 

Autism Acceptance: Executive Dysfunction

What a strange word, right? The internet labels executive dysfunction as “the disruption to the efficacy of cognitive functions, which is a group of cognitive functions that regulate, control, and manage other cognitive functions.”

In other words, doing what you’re supposed to do is really hard.

It’s not that we don’t want to. Hell, executive dysfunction has kept me from writing an article a day for Autism Acceptance Month, like I was super excited about doing. I had my entire schedule planned out for writing it, because doing that ahead of time helps keep me on track. But I’ve only written a few articles, and it’s April 12th. Nearly half over, and there’s still a lot of ground to cover.

Often, executive dysfunction is associated heavily with laziness, when in reality, it is anything but. It blocks important grooming habits, cleaning habits, and requires often creative workarounds. For myself, I cannot bully myself and go “I am so lazy, why can’t I do this simple, simple thing?” the simple thing is showering. I have gone three weeks to a month without stepping foot into a bathtub or shower. Gross? Yeah, it is. But that’s only because until now, I haven’t figured what was going on and how to help it.
Executive dysfunction presents itself in not just autism, but also depression, BPD, bipolar disorder, ADHD, anxiety, etc. It is comorbid with many mental illnesses, though autism itself is not a mental illness, but a neurotype. With 1 in 3 individuals dealing with mental illness, that’s a lot of people potentially not showering.

Executive dysfunction pertaining to autism is a little harder to deal with, because no amount of medication will help. I tried herbal supplements, disciplining myself when I didn’t do the thing I was supposed to be doing, even energy drinks. My issue wasn’t a low energy issue, though. It’s the way my brain is wired.

A couple of ways I work around executive dysfunction is allowing myself to recognize the blockage. I tell myself “Though what is happening isn’t helpful, I recognize this obstacle and will allow myself time to ready myself.” If this isn’t enough, I contact  a friend to encourage me. I also try to have someone do a task with me. For example, ten minutes ago my friend Sam told me if I cleaned off my bedside table, they would shower. It wasn’t a major event, but it helped me get up.

Executive dysfunction is one of the things that frustrates me the most about being autistic. On paper, I am a terrible friend. I don’t answer messages quickly(if at all), I don’t always answer phone calls, and sometimes I don’t send friends gifts when I’m supposed to(Promised gifts, not in general. None of my friends are so shallow they demand gifts) For the most part, my friends are extremely forgiving, knowing that I struggle not only with finances, movement, and parenting a child, but that I’m often being pulled in several different directions at once because of the combination of things I have to do. This doesn’t stop outsiders from commenting, however.

I mostly get comments on my appearance and my son’s appearance. My son despises clothing, which people understand, but his hair is curly and unkempt. He doesn’t allow me to brush it, so I space those out to bathtime. If this weren’t coupled with my own appearance, which is me dressing for comfort, not shaving my legs or armpits, keeping my hair up because it’s pretty greasy, it wouldn’t be such a big deal.

Luckily, most mothers and parents I know are hot messes and don’t judge me for skipping a shower or only running a washcloth over my body. And most mentally ill friends I have also have issues bathing and finding the will to keep themselves groomed.

Executive dysfunction doesn’t just mean we don’t shower. Some autistics have little to no issues with grooming. it can pertain to schoolwork, your job, even just walking into a room. And it can manifest in different ways depending on what day it is. You can even call it “extreme procrastination,” which is pretty close to what it is.

As a reminder, please visit the Autism Acceptance Month fundraiser on facebook and think about helping my friend and I donate to ASAN!

 

Autism Acceptance: Echolalia

Echolalia is described as the meaningless repeating of others’ phrases. I gotta tell you, though, echolalia has meaning sometimes.

My son and I watch a lot of Pixar movies. My son engages in a lot of echolalia, often never saying a word unless he heard it on a screen first. Most of his speech is reiterating a television show, commercial, movie, or YouTube video. So I get to hear a lot of “There are no red lights in a car chase!” (Big Hero 6) and “These facts an opinions are all so similar!” (Inside Out) and “Oh no, Slushious!” (Home, which is Dreamworks, so forgive me)

Through my own experience with echolalia, I’m here to tell you that, if you think about the context in which these phrases are said (tense situation, happy situation, sad situation) the phrases make sense. When I was little, I often took movie quotes and said the phrase that matched the emotion the movie made me feel at the time with the emotion I was feeling. Of course, I used Land Before Time, Beauty and the Beast, Aladdin, and 101 Dalmations rather than Pixar and Dreamworks movies.

I got in a lot of trouble for it for “not paying attention to what was happening,” though. I didn’t understand why, because the people in the movie felt sad too, so it was relevant to me. It matched. Even now, I have to stop myself from repeating movie lines. I remember the slaps, spankings, and stares full of hatred any time I opened my mouth as a child and stay quiet. I went from the weird, goofy kid to the shy and withdrawn child. I had learned that my mouth was my greatest enemy.

Now that I have my own child, I refuse to allow him the same pain I went through. Not by my hands, or anyone else’s, as long as I can help it. I can recognize happy phrases, upset phrases, sad phrases, hungry phrases, because I have the proper context from the movies we watch.

Occasionally he asks for something himself, without prompting or using echolalia. But mostly he parrots what he hears, and that’s fine. One thing he will never hear from me is “Stop saying that,” followed by  name calling.

I am not saying that every person who does echolalia is exactly the same. I’m saying, if someone you know does this, it might be a good starting point in understanding what they’re trying to tell you. Echolalia is used in kids to learn language, which means it’s an important part of communication. That doesn’t stop when your child is six, or twelve, or eighteen, thirty, and so on. How often do people use quotes others say to convey a sentiment they can’t express properly? How often are movie, videogame, Bible, and song lyric quotes put on a pretty background on tattooed on us because it echoes a sentiment we couldn’t express in our own words?

Echolalia is important. Take it all in.

 

 

 

 

 

Autism Acceptance: No, Everyone is NOT a Little Autistic

I’m going to come right out and say it. I despise the phrase “We’re all a little autistic.” Other than the fact that it isn’t true, since autism is a neurotype and classified in the DSM-V as a cognitive disorder, it’s pretty ableist to say it.

I was recently in a discussion in a mom facebook I joined a while ago, talking to another mom who has an autistic child. She was talking about the noises her daughter makes, and we were relaying stories back and forth, appreciating when our kids expressed joy, and another mom piped in with the dreaded “Everyone is a little autistic,” phrase.

Nevermind that the saying had no place in the current conversation. It didn’t matter. She needed to interject with her little quip about autism. Maybe she thought she was being cute, popping in with her bit of sage wisdom. Maybe she equates autism with quirky habits like needing things to be neat and tidy or collecting small horse figurines, or color-coding your outfits by the days of the week.

What actually comes across to an autistic person is this: “Your experiences are invalid so stop complaining.”

Does she mean that? Probably not. People often use the “Everyone is a little____” to find common ground. But that’s not what happens. And in case you couldn’t figure out why people got angry with you when you said it, this is most likely why. There’s been countless times I’ve seen this phrase. Comment sections, Tumblr, my own facebook wall. It is extremely discouraging.

In case the reasoning is eluding you, let me give you another example using another thing I deal with: anxiety. I feel comfortable with this because anxiety is often comorbid with autism.

I get the phrase “Everyone’s a little scared sometimes,” but what other fail to understand is, I’m scared ALL of the time. Just like I am always autistic. When you tell me “Everyone does this,” what you’re telling me is that I need to stop complaining about my experiences. When I talk about shaking, feeling nervous, the feeling of impending doom, and you go “Oh I get that sometimes,” you miss the part where I tell you I am ALWAYS feeling like this.

So when an autistic person is telling you about sensory issues with food, don’t equate it to when you got a virus and had trouble eating whatever you threw up for a while. It’s not the same, and that doesn’t make you a little autistic(Yes, this happened to me)

When an autistic person says bright lights hurt their eyes, it’s not the same as stepping out into the sun for the first time that day. Don’t tell them it’ll get easier to deal with and stop complaining.

I can absolutely understand wanting to connect with someone. I really, truly do. Connecting with people is a wonderful experience that does not come easy to me on a deeper level. But please don’t throw our experiences under the bus. That alienates us and does not make us like you.

Instead, what I suggest is saying…nothing. If you’re online, read. Listen. Ask a question or two if you’re confused. But never, ever tell an autistic person that we’re all a little autistic. If you’re in person, it’s the same. Nod, make the appropriate sounds, but never use that flippant response.

As a reminder, Ashley and I are doing a fundraiser for the Autistic Self Advocacy Network. We are selling non-toxic acrylic nail wraps that we put designs on. To see Ashley’s work so far, visit this page.

To visit mine, go here.

Autism Acceptance: Hate Breeds Hate

I’ve been having an emotional and trying couple of days. Before April even began, many autistics felt the heavy weight of responsibility on their shoulders. And while we often enjoy pressure(in the physical sense), this one came with a sense of foreboding. The calm before the storm. The quiet before all hell breaks loose. The end of March.

The end of March brings about three types of people: Autism Parents, autistics who are sick of “awareness,” and trolls. Autism Parents regularly dig down with autistics who are trying to get them to see that acceptance is the path to go, not awareness. However, while we don’t see them(usually) as lost causes(which is why we engage them in the first place) sometimes we fail to see trolls for what they are.

A famous line, for basically anyone trying to silence a marginalized group who is venting, is the phrase “Hate breeds hate.” The sentiment that comes along with that is “If you hate your oppressors, we will hate you more.”

Now, since when did “hate breeds hate” mean that? Ever since humans discovered that there aren’t many responses to it, because it’s true. If you engage in hateful behavior, you will cause others to dislike you.

However.

“Hate breeds hate” came from Martin Luther King Jr. in a sermon he published in his book “Strength to Love,” a final book of sermons before his assassination. Here is the entirety of that sermon.

Darkness cannot drive out darkness;
only light can do that.
Hate cannot drive out hate;
only love can do that.
Hate multiplies hate,
violence multiplies violence,
and toughness multiplies toughness
in a descending spiral of destruction….
The chain reaction of evil —
hate begetting hate,
wars producing more wars —
must be broken,
or we shall be plunged
into the dark abyss of annihilation.”

Though King’s sermons focused primarily on racial segregation and peaceful protest, this message is universal across any struggle. Hate does breed hate, but not in the way people tell us. If you treat someone like they are not a person, they will hate you. If you punch down, you are an oppressor. Full stop.

Do not attempt to tear us down. If you don’t care about us, then leave us alone. Suicidal thoughts among autistic adults are ten times more likely than allistic adults. 7 out of 10 disabled people have been or are being abused. 83% of women with developmental disabilities are raped, and only 3% of cases are reported for the 30% of men.

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We have ENOUGH to deal with. We do NOT need your convoluted rhetoric staining our movement. This is what awareness looks like. We need acceptance.

Autism Acceptance: Artist Showcase

For today’s artist showcase I’ll be giving you a peek into Space Robot Studio’s Etsy page.

They’ve got stuff from pronoun necklaces

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to knit hats(which look super soft)

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And even less colorful item versions for those who aren’t fond of bright colors.

There’s also my personal favorite, the communication necklaces, which give the wearer the option of using a battery to tell people their energy levels.(there’s also cats and smiley faces. I want them all!)

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If you have questions, you can visit their etsy page, or head to their tumblr and send them a message!

10% of their profits are also going towards ASAN, just like Ashley and I’s. So go check out their page, it’s full of stimmy goodness!