Autism Shines

A new Facebook page, called Autism Shines, has been created where people can upload photos of themselves or of the people they know who are autistic. It was created to combat the disturbing trend of autism blaming that has jumped into the spotlight since last Friday's horrible events.

This is the real truth of autism: caring, kind, loving children and adults. Come and see their pictures and read their descriptions; even upload some of your own.

Let's make sure the world knows that this is what autism really is.

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Guest Post: A Letter to Elisabeth from an autistic adult

This post was written by my friend Rachel Cohen-Rottenberg, who blogs at Disability and Representation. Rachel is a writer and photographer, a disabled woman, and an activist passionate about disability rights. The piece is addressed to Elisabeth, the same person to whom I directed my last post. Please feel free to share it widely.

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I saw your post making the rounds of Facebook today. I’m sure you know the one I mean. It’s the one in which you refer to autistic people as “monsters” who “need to be locked up… ALL OF THEM.”

I realize that you’re scared. I realize that we live in a country in which 20 little children were just murdered while sitting in their classrooms. I realize that you want to somehow solve it, that you want to somehow feel safe, that you want to somehow cast this evil out of our midst.

I understand how you feel. I feel scared, too. I want to solve it, and I want to feel safe, and I want to cast this evil out of our midst so that no one ever has to bury a loved one again after such a horror.

But calling for all to be punished for the evil done by one person — that is its own violence.

It is prejudice. To decide that, because one member of a group did a despicable thing, all members of that group are suspect is the very definition of prejudice.

It is scapegoating. The person who did that despicable act didn’t do it because he was autistic. I don’t know why he did it, but autism wasn’t the cause.

It is verbal violence. It engenders hatred. It has the potential to put innocent people at risk. I have friends who are fearful for their safety right now. I know parents who are afraid for the safety of their children right now. Innocent people. Good people.

People like me.

I am on the autism spectrum. Let me show you who I am.

This is a picture of me with my husband Bob. It was taken at my kid’s high school graduation in 2011. I look distinctly like a full-fledged human being, don’t I?

That’s because I am. I’m a human being with a husband and a kid who love me, and who rely on me, and who can’t imagine their lives without me.

I’m a human being with friends both near and far.

I’m a human being who loves to write and to think and to create things of beauty.

I’m a human being who becomes upset at injustice, and who sometimes can’t sleep at night because she feels the suffering of other human beings so deeply.

I’m a human being who walks into any situation just wanting to help and to extend a kindness.

I’m a human being whom other human beings implicitly trust, because they know that I would never use anything they tell me against them, and that I would never break a confidence, and that I would never willingly hurt a living soul.

That is who I am.

Autism doesn’t make monsters. The monster is the fear that evil creates.

Don’t let the evil win. Don’t let it make you see monsters in the place that human beings are standing. Because if you do, evil wins. And after the events of last Friday, none of us wants to see that happen.

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A letter to Elisabeth J.A.

This screenshot has been making the Facebook rounds; I don't know where it originated from and I've done my best to remove the identifying information. Seeing this makes me want to start sobbing and run and hide from the world, but instead of lying on the floor in the fetal position, I thought I would try to calmly respond to this, in the hopes that Elisabeth might see it.

Elisabeth, my son is autistic; I call him Child 1. He's 10 years old, will be 11 in January. His autism affects him in a way that causes him to spend a good deal of time "lost" in his own thoughts. When you talk to him, he is very likely to respond to you in a way that involves whatever he is thinking about (elevators, subway trains, etc.) and oftentimes it doesn't make a lot of sense. He also flaps his hands and runs back and forth a lot. He doesn't like it when other people try to engage with him, particularly people his own age. He likes to be alone. If you were to meet him, it would be obvious to you almost immediately that there was something "different" about him. You wouldn't necessarily know what was going on, but you would know that there was something happening.

Sometimes he gets angry with me, usually because he doesn't get his way, much like any other kid, and when he does he will hit me. He doesn't hit hard, he doesn't cause injury, and he does it only to express his frustration. He feels frustrated because he's not getting what he wants but also because he has a very difficult time explaining to me how he is feeling. Have you ever been having a conversation and suddenly you can't find the word to describe what you want to say but you don't know why? You might say it's "on the tip of my tongue," or something similar. Imagine if all of your words were always "on the tip of your tongue." That's how my son feels almost all of the time, and as you hopefully are able to understand, that can be a very frustrating feeling. If you felt like that all the time, you might want to hit me, too: in the moment.

But then the moment is over, and my son's frustration will subside, and he will go about his business just as happily as before. This is typical autistic behavior, and it comes with differing levels of severity depending on the individual person. What is not typical autistic behavior is somebody who will irrationally direct violent rage onto a person who is not immediately connected to their situation. They will not spend any time plotting revenge, or planning what they will do next; they will not drive to a different location and shoot people they don't even know. When the frustration is gone, it is gone.

My son is who you're talking about when you refer to "these monsters," and I'm writing this now because it's so important to me that you know about him, and others likes him. Autistic people are not "sick fucks." My son is not a "sick fuck." He is a sweet, beautiful, smart child, who is funny and warm and caring, just like most autistic people are, regardless of their ability to communicate. Elisabeth, what happened in Connecticut didn't happen because the shooter was autistic.

Here's another point of information for you to know: 46% of autistic children have reported being bullied in middle school and high school. This happens for a number of reasons, most notably because 1. They are noticeably "different," as I mentioned about my son earlier, and 2. There is a good deal of misinformation out there about autism, a lot of which is being spread by an irresponsible media at the moment, and your words here cause harm. You are helping to spread incorrect information about my son and you are causing him harm. 

You need to know that my child has a much greater chance of being a victim of violent crime than of being a perpetrator. You need to know this, Elisabeth; you need to be aware of how your words cause harm. I understand your anger at the situation, I'm angry, too; and I understand your need to try to find meaning in why 20 babies and 6 adults had to die, but I promise you, Elisabeth, I promise: autism is not the reason for this. 

I'm happy to talk with you more about this privately if you'd like to contact me. jillsmo at gmail.com; I promise I'm a nice person and my goal here is to educate, not to cause a fight.

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The Connecticut tragedy and autism

I sent this letter to every single person I could think of at our district, including the Superintendant and the School Board.  Feel free to grab it and use it as your own, although I did borrow some of the language from the Autism Discussion Page on Facebook.

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Dear (school) community:

There has been much discussion online and in the news about the connection between the Connecticut school shooting and the fact that the shooter may have been diagnosed with autism. As our families and our community discusses this issue and tries to find a reason for this heartbreaking tragedy, I feel that it is very important to remember the following: There is no connection between planned, violent behavior and an autism spectrum diagnosis of any kind.

Autism is not a mental illness; it is a developmental disability. Many autistic people may have emotional regulation problems, which are impulsive expressions of frustration and anger, that are immediate and disorganized. They may lash out with threatening statements or behaviors, but these behaviors are impulsive reactions, they are not deliberate or organized plans. Once the situation has been diffused, the behaviors will stop. What happened in Connecticut required methodical planning of a deliberate and tremendously violent act; this is not typical behavior of an autistic person.

Right now we are all struggling to find a reason why this kind of atrocity would happen, and we can speculate about the mental state of the shooter; about gun control laws; about the current state of our country’s mental health system, or about whatever else that might help us make some sense out of this. Please know, and please tell your children, that even if the shooter was autistic, autism is not the explanation for this tragedy.

If anybody has any questions about autism, please do not hesitate to contact me.

Thank you very much for your time,

Jill
Mom to (Child 1) in 5th grade, with autism

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Sunspots have faded and now I'm doing time

Somebody thanked me today for a post I wrote about 6 months ago, ironically it was a post I had written in response to people thanking me for posts I've written. She said it saved her from despair, and it got me thinking about how I have apparently gained myself this reputation for speaking the truth about things, but I haven't been doing very much of that lately. So, I thought I'd do it again and explain the real reason why I've pretty much stopped blogging: depression.

I'm struggling. Hard. The last 6 months or so have been really difficult. I've been depressed my entire life, at some point in the last 10 or so years I just came to terms with the fact that my brain chemistry is fucked and I would need to be on some kind of medication for the rest of my life, but apparently they stop working after you've been taking them for 20+ years and so I'm currently in the middle of trying to work out the chemistry in my fucked up head, and it's been an enormous struggle.

I know I'm not the first person who has stopped blogging because of depression, in fact I know that a few of my blogging idols have gone that same route.

Right now I'm in this place where I bounce back and forth from being semi okay to being very very not okay; it's completely unpredictable and I'm literally a slave to my emotions. Some days it's all I can do to just get the bare minimum done, and even then I don't do it all that well. Blogging, or being funny, or being eloquent, or being meaningful,,,, is simply impossible. Even typing this words right now is a huge effort for me. So I'm just waiting.... waiting for the brain chemicals to figure themselves out and for things to get better. Fuck, waiting is hard.

I'm not really sure why I'm writing this. Is it to "de-stigmatize mental illness?" I've always hated shit like that, it sounds so phony. Do I feel the need to "come clean" about where I've been? I don't know, I don't think I owe anybody an explanation. I'm not doing this for your pity (turning off comments, sorry), this is not a cry for help, and I'm definitely not asking for advice; it's just more informational than anything else. This is what's going on with me. I bet it's also what's going on with a lot of you. I guess we should talk about it? Will that help?

So, I'm just writing this to get it out there, I guess. I mean... what's the worst that can happen? That the world will know? Isn't that the point of this truth-telling reputation I've gained for myself? To be honest about the good and the bad and all that's in between? Although maybe this is too honest; too much information. I don't know. If I end up regretting this, I'll just delete it.....

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Things I find in my house 15

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Out of the mouths of babes 34

The scene: The Smo family is sitting down to a lovely meal that Mr. Smo has prepared.

fade in

Me: This is awesome! Thank you, Daddy, for making such an awesome meal! (whisper) Child 2, thank Daddy for the awesome meal (/whisper)

Child 2: Thank you, Daddy! This is the best meal I've had ever since the last meal I had that was a great meal!

Me: Nice. (whisper) Child 1, say something nice to Daddy about the food (/whisper) 

Child 1: IT'S THE END OF THE WORLD!

fin

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It was a Pyrrhic victory

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Social media tips from @jillsmo

Let's say you're following somebody on twitter who annoys you. You think they're a whiner, you think they talk too much about getting drunk or something, you think they're a shitty parent.... for whatever reason, you don't like them. You no longer wish to read the things they have to say about their lives.

This is potentially a very common problem for those of us who use social media, and so I've decided to use my vast social media experience and give you guys some tips on how to deal with a terrible situation like this.

If the offensive behavior is happening on Twitter, here's a simple button you can press that will instantly alleviate you of your crushing burden:

And on Facebook? There's a similar button!

Here's what you should NOT do, however:

Because.... why is being an asshole necessary?

The answer is that it isn't: being an asshole is not necessary. It makes you angry, it makes other people angry, it causes unnecessary fighting; it's just bad shit, in general. If something bothers you so much that you feel the need to say really, really shitty, personal things to somebody you don't even know? Fuck off and keep scrolling.

In short, my social media tips can be summed up with this handy graphic, which you are free to use and share:

For more social media tips, constant talk about vodka, stories about shitty parenting, or just general planet-killing irresponsibility, you can follow me on twitter at @jillsmo or on Facebook at Yeah. Good Times. YAY!

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The bane of my existence

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The ebbs and flows of poor personal hygiene

Earlier today I was sittin' ... just sittin'.... you don't need to know where.... and I was looking at my arms and noticing that I have a ton of freckles and sun spots and shit. I remember asking my doctor about them years ago, she said they're there "because you're old." I love her. That's just something that happens to your skin when you've spent your life in the sun, it develops freckles and spots and other unsightly things.

But today I noticed something was new; there was a new spot I hadn't seen before. I spotted it and immediately thoughts of melanoma went through my head. That's the kind of cancer that killed my brother so everybody in my family is hypersensitive about any changes to our skin. I inspected it and saw that it was dark and symmetrical in color and shape, so probably not melanoma. Probably just a new freckle that's there because I'm old. I pondered the new spot on my arm, thinking about life and how everybody ages; one day my kids will be my age and I'll probably be dead; one day they'll have kids of their own who will also be my age... the circle of life, the constant ebbs and flows of it all. Very existential stuff for a Sunday morning.

But then I moved and I bumped my arm onto the side of the counter and suddenly half of my new spot was gone! So, I scratched at it and the rest of it just came right off.

Huh.

I guess it was food. Last night I made duck with a miso glaze and my spot was the exact same color that the duck skin had turned out to be. A nice, deep dark red, almost black; it really was very tasty.

So much for the ebbs and flows of life, this was just some food I'd dropped on myself while I was eating, about 12 hours earlier.

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Fuck you, cancer

We have this area in our house that has a very long section of floor; you can see by the picture, which I took just now, that today the space is used to spread out a really long piece of easel paper, and said paper is then used to draw elaborate BART tracks or elevator schematics. When Child 1 was a pre-walking baby, this space was used for him to crawl back and forth, or push his cart back and forth. Eventually, and also today, this space was used for him to run back and forth.

My brother died in April 2003, he was 35; in 5 months it will have been 10 years. One day when Child 1 was a baby he was at my house, sitting on the couch that would have been just off to the top left of that picture. Watching Child 1 crawl back and forth in that space I remember him commenting "wow, he really likes to go back and forth back there," or something like that; I don't remember the specifics. It didn't make an impact at the time but I guess it stuck in my mind, for some reason.

This was before our diagnosis, before Child 1 even had a speech delay; he was 15 months when my brother died. We had no idea, at the time, that this space would become significant in later years; when he would spend hours running back and forth in this space, this roomy space on the other side of the couch. Where he can now spread out his very long piece of easel paper and draw his most favorite things. There was nothing significant about his comment of my brother's, at the time.

Today, though, I will sometimes watch Child 1 flap his hands, jump up and down and run back and forth in this space, and my memory of that day is sparked. I remember what my brother said about that space behind the couch and I get angry; so very very fucking angry. My brother, who took notice of the significance of this back and forth space before any of the rest of us did: he's supposed to be here now. He was supposed to have been here when Child 1 started walking, when he was diagnosed, when he went through his home program, when his brother was born, when his brother started walking, when they both went off to school..... He was supposed to be here for this. He's supposed to be here now. He's supposed to know his nephews, to be the awesome Uncle who gives them treats and teaches them tricks that I disapprove of, who they want to hang out with when they have a day off. He was supposed to be here for them. They're supposed to know him.

He would have kids of his own now; I would have my own nephews or nieces. My kids would have these cousins, they would have their play house in San Francisco with all the toys and the games and the piano. This is what was supposed to have happened. But cancer had other plans for us, apparently. And almost 10 years later I still get so angry about it. So fucking angry.

This isn't how it was supposed to be.

It's not fair. It's not fucking fair.

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Dead mouse revisited

I discovered a dead rat in my house earlier today and as I forced hubs to deal with it, while I cowered in the corner, I was reminded of what happened the last time I found a dead rodent in my house: My most favorite post ever. I originally posted this in July 2011

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So, it was Friday night, late, and I was making my final rounds through the house, turning off lights and such, when I encountered 2 things in my TV room: 1. A dead mouse, and 2. A bowl of cheerios that had been spilled all over a chair. I took pictures of them both, assuming I had something for a "Things I Find In My House" post.... little did I know that fate had other things in store for this particular blog post. I would show them to you, but, nobody really needs to see a picture of a dead mouse, right? So you can imagine what it looked like. Plus, I have no doubt that you can also imagine what a spilled bowl of cheerios might look like.

I stood there for a few minutes trying to figure out what to do about this situation. Normally what I would do would be to call hubs and make him deal with the dead mouse, and then get one of the kids to come and clean up their mess on the chair. However, everybody was already in bed, hubs had the flu, and I figured I should just deal with it, myself. But what was I supposed to do?

Then it came to me! I'll take the bowl, where the cheerios used to be, and I'll use it as a scooping device, of sorts, and I'll take the dead mouse outside! Awesome! Oh, did I mention that it was Friday night? And that I was drunk? Yeah. That fact isn't necessarily important to the outcome of this story, but it should be pointed out, nonetheless.

So, I do the scooping thing, and I head into the backyard, and suddenly I'm being followed by about 5,000 (murderous) cats who are very interested in what I might be carrying in this bowl. Hey, what do you have there, human? Can I see? Can I just check it out? Just real quick like? And suddenly I have this sense of urgency, that I must get rid of this mouse as soon as I possibly can. I'm still not sure what I'm going to do with it; I actually considered composting it, but that would have required a whole lot more effort than I was interested in at the moment, so, instead, I head to the back of our backyard, to the fence that separates our property from the neighbors, and.... observe.......

And then I went inside and went to bed.

fin

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The R-Word and Why It Matters: The Case of Jenny Hatch

Please take a moment to read this article, written by Rachel Cohen-Rottenberg, about Jenny Hatch. Jenny is a high-functioning 28-year-old woman with Down Syndrome who has been placed under temporary guardianship and sent to a series of group homes, away from the community she knows and loves, and against her will, and then sign the petition at Change.org.

Here is Rachel's excellent piece.

Here is the change.org petition that needs your signature.

Thank you!!!

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Horray for vaginas!

Last night was a victory for vertical smiles across the country!!  Congratulations cooches!!!

Let this be a lesson to the cranky old men who want to wield their power sticks and try to control our love muffs.

Our beavers will not be silenced. Last night they spoke out, taco-style, and discharged a very clear message to politicians: Stay out of our clams!!

HORRAY FOR VAGINAS!!!

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