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“Robin Williams didn’t die of suicide.”

It’s honestly heartbreaking to hear about things like Robin Williams’ death. That someone who was that successful, that selfless, that kind and loving, couldn’t win the battle against his mental illness.

I’ve seen it making its rounds on the internet lately. “Robin Williams didn’t die of suicide.” The argument is that, when someone dies of cancer, we do not delve into the details of the exact medical cause of death. When someone asks, “How did they die?” We do not say, “Pulmonary embolism.” Apparently, this is evidence that we should not say that Robin Williams died of suicide, because suicide is a “fatal symptom” of depression. So we should say that Robin Williams died of depression.

I take issue with this.

Setting aside the fact that Robin Williams suffered from bipolar disorder, not depression, and therefore it’s extra wildly inaccurate to claim that he died of depression, and also setting aside the fact that his wife has divulged that he was suffering from early stage Parkinson’s Disease, which presumably caused him to feel more hopeless.

Let’s just address this idea of naming the cause of death as something other than suicide.

The argument states that, by calling the cause of death “suicide,” we are making it seem like depression is a choice. That’s frankly ridiculous. Depression is not a choice. Most of us acknowledge that. However, suicide is, in fact, a choice. Barring psychosis, you can spin it in whatever direction you’d like, and suicide will still be a choice. There is a reason we have suicide hotlines and not pulmonary embolism hotlines, and it has everything to do with the fact that suicide requires a person to make a decision. If you think you’re about to have a pulmonary embolism, calling a hotline to talk to someone who will tell you not to have a pulmonary embolism or give you resources that will tell you what to do instead of having a pulmonary embolism is going to do absolutely nothing for you. However, if you think you’re about to commit suicide, calling a hotline to talk to someone who can provide you with reasons not to commit suicide and with resources to help you actually CAN do something to prevent you from committing suicide.

It would be totally harmless to insist that Robin Williams died of mental illness if mental illness weren’t already a diagnosis associated with such hopelessness.

Speaking from experience, I can tell you that having a mental illness feels like a sentence to life without hope. It’s terrifying. It feels like you will never find joy or comfort. So to hear someone say that Robin Williams’ suicide was not a choice, but a fatal symptom, makes it sound inevitable. After all, if this illness is going to result in death at my own hand regardless, why should I keep fighting it? If I have no control over whether or not I commit suicide, why bother trying not to do it?

I have attempted suicide. And I would be lying if I claimed that it was not a choice. I knew what I was doing. I thought about it. I considered my options. I was in control of my actions. It was not a fatal symptom. Suicidal ideation? That was a symptom. That was something that I had no control over. I could not stop myself from thinking about it, struggling with the idea of it. I could, however, stop myself from making that decision.

Does that mean that people who commit or attempt suicide do not deserve sympathy? No. Suicidal ideation is horrible, and it eats away at you. It feels like something is invading your mind and you have no control over it. And that is why it is so important to me that we keep on stating that suicide IS, in fact, a choice. Because the less power we give ourselves over something like this, the easier it is to give in to those ideas. The more we tout that mental illness itself is the culprit of the deaths of those who commit suicide, the more power we give to mental illness, and the less power we give to those suffering.

So no. Robin Williams did not die of mental illness.

He died of suicide.

He suffered from mental illness.

I suffer from mental illness. A lot of people I care about suffer from mental illness. Suicidal ideation is frequently a symptom of that mental illness. But we do not need to die of suicide. We have that choice. We have that power.

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Autism Speaks… and why I can never, will never support the organization.

From Autism Speaks’ “PSA,” “I am Autism.”

I am autism. I’m visible in your children. But if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering, “Who will take care of my child after I die?” And the truth is, I’m still winning. And you’re scared. And you should be. I am autism. You ignored me. That was a mistake.

And to autism, I say, I am a father, a mother, a grandparent, brother, a sister. We will spend every waking hour trying to weaken you. We don’t need sleep because we will not rest until you do. Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community. I am a parent riding towards you and you can push me off this horse time and time again but I will get up,  climb back on, and ride on with the message. Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers and daughters and fathers and sons. We are the United Kingdom. The United States. China. Argentina. Russian. European Union. We are the United Nations. We are coming together in all climates. We call on all faiths. We search with technology and voodoo, prayer and herbs, kinetic studies, and a growing awareness you have never anticipated. We have had challenges, but we are the best when overcoming them. We speak the only language that matters—love for our children. Our capacity to love is greater than your capacity to overwhelm. Autism is naive. You are alone. We are a community of warriors. We have a voice. You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness. You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands? You have not been properly introduced to this community of parents and grandparents, and siblings and friends, and schoolteachers and therapists, pediatricians and scientists. Autism if you are not scared, you should be. When you came for my child, you forgot. You came for me. Autism, are you listening?

Their motto is “It’s time to listen.” As if this is what autism says. As if this is what you should hear when you hear the gleeful vocal stims of an autistic child or see my beautiful boyfriend flapping his hands with excitement. As if all that matters is the family. You noticed that, right? This so-called “PSA” doesn’t focus on the individuals. It tells you all about the torment and terror placed upon the families. And, quite deliberately, it avoids focusing on any of the positive aspects, of which there are many.

Autism Speaks would have you believe that Autism is a monster which they can represent in some thinly veiled scare tactic. “Give us your money, because we say that autism wants to destroy you.” “Give us your money, because we’re not willing to take care of the people we claim to serve.”

This PSA claims that the families are the ones that matter… but the organization dedicates a whopping 4% of their budget to helping and providing services for families.

They want to help people… but what they really want is a “cure.” However, this “cure” is a misnomer. It’s actually a preventative measure, one that they wish to use to prevent autism from existing.

They act as if autism and an individual can be separated, as if a person is still the same person without autism. As if that person ever was without autism. I ask you this: If you know someone on the spectrum, can you separate them from their “autistic traits”? Can you draw the line and say, “This is autism, and this is the person I love”? What does autism affect? Is it only meltdowns and struggles to communicate? Or is it more than that? Is my boyfriend’s literal sense of humor just coincidentally similar to the way that most autistic people think literally? Is my lovely Em’s knack for learning all there is to know about magic (and enthusiastically sharing it with me) simply asymptotic to the fact that many people on the spectrum tend to become obsessed with one particular topic? Can I take away “autism” and leave those parts behind?

And this cure… How sure are you that the person you say you love wants it, too? Have you asked? Or do you just assume that they want it because you do? And why do you want it? Do you have a good reason, or is this just “too hard” for you?

This organization disgusts me. Members of it have been quoted saying that they’ve considered killing their autistic children, but chose not to solely because of their “normal” kids. Contributors have indeed killed their children. The leaders, the ones in charge, who determine what is and is not important to the organization, are all neurotypical. If autism is speaking, and they’re claiming to listen, how is it possible to do that without any autistic representation?

How can you claim to care if you want to wipe out an integral part of a person?

How can you say you want to listen if you don’t acknowledge communication unless it is verbal and direct?

How can you try to represent an entire population if you don’t value their opinions?

To learn more, take it from them (as directly as possible), not me…

Diary of a Mom — Jess Wilson, mother of two, duaghter Brooke is hilarious, adorable, talented, brilliant, and autistic

Emma’s Hope Book — Ariane Zurcher, daughter Emma is a writer (often featured on the blog), insightful, witty, and autistic

AutisticHoya — an autistic adult, magnificently intelligent, college student, activist, author, speaker

Amy Sequenzia — nonspeaking adult, advocate/activist, epileptic, writer, poet, autistic

Others to look into…

  • John Elder Robison
  • M Kelter
  • Roy Richard Grinker
  • Carly Fleischmann

A quick but important note: While I frequently write about autism and attempt to be an advocate, my opinion will never matter as much as the opinions of those individuals who are on the autism spectrum. This is not an attempt to devalue my own opinion, but a necessary acknowledgment that I cannot claim to speak for a population of which I am not a member. My purpose is to remind the rest of the world that a person who does not use expressive verbal language is not without a voice. And that voice is infinitely more important in this battle than my own.

 

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This is Autism: A flash-blog

There has been quite a bit of buzz around the blogosphere about today’s flash-blog, which is speaking out against Autism Speaks’ Suzanne Wright, who has used the phrase “this is autism” to paint a very extreme and negative picture of autism.

So, without further ado…

This is autism.

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THIS is autism.

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Autism is the person that I love. Autism is goofy dates. It is a huge part of what makes my boyfriend into the person that he is. It’s love, and hope, and healing. It’s a boy who, before having met me, offered to drive to my place of work to greet me with a hug, simply because I told him I needed him. Autism is this boy, this boy who sees me at my worst. This boy who, at 1 A.M., after coming home exhausted from work and barely awake, comes out to the living room where I’m having an anxiety attack to hold me and get me through it for the next two hours. For me, autism is something that is wound into my love’s brain, and that gives him this extremely different view of the world.  Autism is the world in which Elijah lives. It is the lens through which he views people and situations. It is the lens that gives him his unbelievable empathy, his undeniably wonderful personality.

Is autism challenging? Yes. There are miscommunications, angry misunderstandings, difficult nights spent trying desperately to understand each other.

But… Is autism a bad thing? Hell no. There is his tendency to realize that I’ll struggle when alone for the two weeks he’s gone, so not only does he arrange times with my friends so that I have company as much as possible, but he also decides to push back the date upon which we adopt our new kitten, so that I have something positive to fuel me. There is the fact that he understands that some days I just need him to sit down and watch twelve episodes of Bones with me. And more than that, there is the fact that he works so hard to cater to my needs, no matter how irrational they are. It’s the fact that Elijah embodies the golden rule: “Treat others as you would like to be treated.” Elijah treats everyone with as much delicacy as any single person could deserve. Elijah is my autism. Autism is defined, for me, by the boy I love.

This is autism.

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Autism is not a destroying force. It is not chaos, rage, a finger on the trigger.

Autism is a part of a large group of humans. It is an inseparable piece of their humanness.

To call someone’s existence a destructive force is far from “advocacy.” It is, in a word, despicable.

And to Autism Speaks, I ask…

Why aren’t you listening?

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On Empathy and Imaginary Play.

A quick note: I have decided to call the eight year old that I PCA for Beckett. His brothers will be Alvin (older) and Isaac (younger). This is for the sake of protecting their privacy.

It has been a great weekend with Beckett.

There are a couple of hallmarks of Autism Spectrum Disorders. Two of them are a “lack” of empathy (I will explain this in a bit) and struggles with imaginative play.

The lack of empathy thing? A lot of people see that as an indication that people on the spectrum have no regard for the emotions of others and do not care about others at all. They act as if this is a statement that people on the spectrum do not experience love or friendship. This is incredibly false. What it actually means is that it’s difficult for people on the spectrum to imagine what someone else might feel in a given situation. This is not true for every single person on the spectrum. However, with Beckett, he struggles a lot to understand what someone else feels, or to understand what certain emotions mean. I can give you a million and one reasons why I feel as if this way of stating it is extremely problematic. For one thing, there’s the fact that I know a lot of people on the spectrum who empathize to an extreme, as if they feel the emotions of every person they have ever met. For another, there’s the fact that empathy is so multi-faceted that stating a lack of empathy creates an extremely problematic perception, and causes a lot of assumptions that autism is similar to sociopathy. And lastly, there’s the fact that it’s just a difficulty — not a complete inability.

The imaginative play thing relates to that a bit, I think. Beck would generally prefer to play a game with set rules, to do a craft in which someone tells him exactly what to do, to reenact situations that have already happened, or to act out plays in which he is told exactly how to behave. That’s just what’s easy for him.

That being said, I have a couple of great stories that have left me positively ecstatic. I’m struggling not to giggle over these just thinking about them. Beckett really is an amazing kid.

The first goes a bit like this:

Beck has PT on Fridays, which means that I either hang out in the background in case he needs some help with toileting or starts having behaviors that his PT can’t get under control. I’m there as a back up, generally. Yesterday, I got to hang out with Isaac, because their mother had a migraine. The differences between Isaac and Beckett are huge, but I love the fact that Isaac still has this intense admiration for his big brother. Anyway, I digress.

My typical Friday schedule involves getting Beck up from his rest, getting him his snack, and chit-chatting a bit until his PT is ready for him. He’s known that I’ve been working on figuring out how to get Clarence (my bunny) moved in to my apartment for a couple of weeks, so that is always the first thing he asks me about. Yesterday, I was able to finally tell him that Clarence would be moving in on Sunday.

Beck: FINALLY!

Me: Yep, finally! I’m so excited!

Beck: YAY!

So that’s a pretty big deal as is. The fact that he recognized that 1. I’d been waiting for a long time, and 2. My excitement meant reason to celebrate. But the better part comes a bit later. I played with Isaac for a while, playing typical games that one would play with a four-year-old. When their mother’s headache wore off, she came downstairs and asked that I transition myself out by making sure Beckett recognized that I was headed out.

Ordinarily, we praise Beck like crazy if he remembers to say anything other than hello or goodbye. “How are you?” and “Have a good day!” are very much desired behaviors. Hugs are also great. Granted, Beckett-hugs are more like body slams that frequently cause bruising, but he snuggles his head into your stomach, squeezes really tight, and makes a sweet little noise in an attempt to imitate the sound that frequently accompanies hugs. I’m not sure how exactly to describe that sound, but it’s the sound we make when we’re illustrating how tightly we are squeezing someone. Anyway, he does this, and sometimes he holds on for a good thirty seconds before he lets go, and they are sweet moments that I always savor.

Me: Hey, Beck. I’m heading out. Bye, bud! I had fun chatting with you!

Beck: Bye! Have a good week-end!

Me: Hey, thanks! I appreciate you saying that. I hope you have a good week-end too!

With that, I started to walk back up to the main level.

Beck: I hope —

Me, stopping dead in my tracks: What was that, Beck?

Beck: I hope you are happy when you pick up Clarence!

Me: Thank you so much, Bud! I think I will be!

Beck: Because you love him!

Me: That’s right, Beck!

Beck: I hope that Clarence will be very excited to see you!

Did you catch all that? Because it was all 110% HUGE. We praise Beck for so much as remembering to ask how someone is or to wish them a good day, even though most of the time, it’s unclear whether or not he actually understands the reason behind saying these things. We never know if he’s sincere, because well, I think we all know that we occasionally are insincere when saying these things because it’s just social etiquette. It’s what we are supposed to say, whether we actually care how someone is or not.

BUT Beckett recognized yesterday that I was excited to see Clarence, and that, because I love Clarence, I will feel very happy when I get to be with him. He also then took it a step further and thought about an animal that he knows only from my mentions of him. He imagined what Clarence, some rabbit that for all he knows could be purple, six feet tall, and a figment of my imagination, would feel upon being reunited with me, and upon coming home. HAH. Inability to grasp empathy, my ass.

The second of these stories, in my opinion, is just hilarious. Frustrating, yes, but hilarious.

Beck loves my keys. I have no idea why. He asks me a million and six questions about them every day. And they are almost always the same questions. He’s especially fond of my “e-ronic” key (electronic). One of the first things he does after getting up from rest is run to the table whose drawer I put my keys in, pull them out, play with each key on the ring, and then begin the bombardment of questions.

Today, he was a tad flitty. And by a tad, I mean that I spent today sprinting after him across the house and yard to catch him before he dropped electronics in the toilet or bolted into the street. He pulled out my keys and I answered the questions while trying to clean up the pile of random papers and other odds and ends he’d thrown out of a chest of drawers before he could sprint off to some other part of the house again. We continued our game of sprinting throughout the house for the next couple of hours, until it was time for me to go home. We did the transition activity, I walked over to grab my keys out of the drawer. and…

It was empty.

Ah, crap.

Hey, Beck, I have an announcement. My keys are not here!

Beck: A mystery!

Me: Do you know where you put them?

Beck: It wasn’t me. It was my body double!

Me: Oh, do you know where your body double put them?

Beck: Yes, I do. He put them in a hiding place.

Me: What was the hiding place?

Beck: It’s a mystery!L

Thirty minutes, a visit from a neighbor, and six scenarios later, Beck had provided us with the following information:

  1. A thief has it.
  2. The thief was wearing all black.
  3. The thief took it home.
  4. It was dad.
  5. “I dropped it out of midair!”
  6. “Lauren has to stay over for one night.”
  7. Alvin took it.
  8. Isaac took it.
  9. It was the mailman.
  10. The neighbors have it.

So in other words, the only thing anyone was certain of was that Beck had hidden it somewhere.

The great part of this story, though, is that he’d come up with all of these alternative situations of what might have happened. And that is imaginative play. Which is something we’re always trying to get him to work on. He’d even pulled out a pad of paper to write down clues. Of course, the clues he’d managed to write down were RED and ARC, which I think was supposed to spell car. We eventually found the keys, and I left while Beck was continuing to come up with stories about how the keys had ended up hidden in a pile of books.

The thirty minutes of searching was frustrating. I was anxious to get home. But Beck had spent those thirty minutes fully engaged in our imaginary play scenario that wasn’t actually imaginary at all, making up lies (which are not always good, but in this case, he was practicing his ability to think hypothetically, which is very hard for him), and interacting and engaging with five other people.

And that, folks, is awesome.

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This is going to be heavy, folks.

Today is World Suicide Prevention day.

I’m nervous about writing this and posting it. It’s hard to put the most personal part of yourself, the parts you keep hidden from the world, out into the world. Before I go on, I want to warn you.

This post is going to be heavy. It will also include a few asides directed at my mother in case she reads this, because they might be necessary. It will be detailed. It might be hard to read. So if you wish not to read on, I’m asking that you just recognize this: Suicide is not “taking the easy way out.” Suicide is not something that a simple smile from a stranger fixes, like all those stories that get passed on the internet say. Suicide is something that is heartbreaking, terrifying, and it is so important to take it seriously. Don’t forget that. Be aware. Hurting people don’t need to hear jokes about their states of mind. Just know that.

Now, with a deep inhale, I’ll begin.

(Mom, there will be things that you don’t know. I don’t wish to talk about them. Not because I don’t trust you or don’t want to talk to you, but because typing this is difficult enough, and I’d much rather leave some of this in the past.)

For a long time, I struggled with anxiety and depression without recognizing it. My four-year-old mind didn’t understand what was going on, only that the only way I knew to stop it was to try to force my legs into positions that would break them or to tear off my toenails. So that’s what I did. It kept going until I was in the second or third grade, at which point, it all just disappeared. I have no idea why.

After a few years of contentedness, I started to feel my mind collapsing again at the age of thirteen. I felt constantly torn between wanting to do something to feel better and wanting to do nothing at all. I would make changes, as if they might help. I’d spend hours writing the alphabet using entirely different handwriting, until it stuck. Or I would cover my walls in quotes, only to eventually tear them down on a day that the world felt too busy. I quit hanging out with certain friends. I threw myself into random topics, which of course, were not all bad. In fact, it’s caused me to be quite knowledgeable on things that I very much enjoy.

When I was fifteen, for the first time, I slammed my fist into a wall. I don’t remember the trigger. For a while, the bruising and swelling in my knuckles was enough to satisfy how sad and, yes, angry, I frequently felt. Sometime toward the end of my sophomore year of high school, I cut into my skin for the first time.

If you’ve never experienced it, I doubt that you know the conflict that comes when the razor is pressed against skin. The hesitation, knowing that once you press down, there’s no going back. Knowing that you won’t stop once you start. And then, the depression overwhelms, and there you go.

It’s a common misconception that cutting helps. It really doesn’t. The pain serves as a reminder of the feelings. Every time you look at the injuries or wince when jeans rub against them, you remember, even if you’re happy, that the feeling will pass and you will cry yourself to sleep. But for some reason, the pain becomes addicting.

People asked me about it, but I think that most of the time, we’ll take whatever answer is easiest to deal with. So if I said that I fell out of a tree, or it was a one-time thing, or I got burned on a hot light, they accepted it. Some people gave me dubious looks. One person in particular confronted me multiple times, every time telling me that she knew the truth but wouldn’t press. Some people found a way to make it work, by telling me that they knew what cutting was, and my self-injury didn’t fit the pattern, so they were sure I didn’t do it.

But the thing is that we all know that cats don’t scratch in straight lines, it’s just easier to accept a mean cat than it is to accept depression.

Now, how does this get to suicide?

I didn’t tell anyone. Nobody had any idea. Or, if they did, they didn’t say anything about it, save for making jokes whose intended effect I am unsure of.

For the next three years, I was spiraling deeper and deeper into depression. I wouldn’t do my homework. I wouldn’t hang out with my friends. I’d keep myself curled in a ball, hidden away in the theatre at school. I never ditched class. Somehow maintained good grades. Smiled when I was supposed to. Didn’t cry.

When I was eighteen, to use a common phrase, shit (sorry mom) hit the fan. I was struggling more and more. I was clinging to any reason to live that I possibly could. Seeing a musical with my best friend. Knowing that it was too close to opening night for me to stop showing up at theatre. Knowing what my little brother would feel if I were gone.

Summer came, and I spent days upon days lying in bed watching random television shows, entire seasons in a day, entire series in a week. When I worked up the energy to do something, I’d walk. I’d walk for hours and hours. And then I’d go home and sleep.

Some days, my parents would find me curled up in bed, sobbing as if everyone I’d ever loved had just died. They didn’t know how to comfort me. I would cry for hours. I wouldn’t be able to calm down. I’d beg someone to tell me why this was happening to me. Due to the circumstances of my life at the time, it was assumed that this was heartbreak. It was a friend who finally told me that if I didn’t tell my parents that I needed help the next time I had one of these spells, she would. So I finally confessed. We set up an appointment, we got started, I was prescribed meds.

I don’t remember the trigger, but one day, I finally worked up enough courage to get out of bed and get dressed, make myself look nice, apparently so that I wouldn’t be an ugly corpse. So I tried to kill myself.

I failed, obviously.

I don’t think I have ever considered failure to be a good thing before  now. But it is a great thing. I’m not cured. I still battle depression, I still need medications every day to cope, I still have nights during which there is nothing Elijah can do but hold me as I cry for an hour. That’s the nature of this disease. It is what it is. But I’m living with it, and I am, overall, happy.

And now for the plug:

The thing is that I did not try to take the easy way out. I just became so exhausted that I simply could not live another day feeling the way I did. We applaud people who take time for themselves, who quit a job because it makes them miserable, yet we act as if people who succumb to mental illness are just lazy. But when you are young, when you don’t know what’s happening to you, don’t know how to cope with it, what are you to do if the “job” that is making you miserable is simply getting out of bed?

There needs to be a change. Do I wish my parents had forced me to go into therapy when I was younger and they thought something was wrong? Yes. Do I blame them (this is added for you, Mom) for giving up when I got into screaming battles with them over the idea of it? Not in the least. They had no idea. I had no idea. None of us knew where I was heading and that I wouldn’t simply “grow up.”

But the fact of the matter is that we, as adolescents, are told about the signs of suicide, told to talk to someone if we feel depressed, but no one tells you what to do when you want desperately to ask for help, but you’re so afraid that the words get stuck. No one tells you how to react when your friends confess it. And no one tells you that sometimes, a person you talk to won’t care. I was told, for instance, not that my life was valuable, not that I should get help, not that they care or love me, but that I should make sure that it works because attempted and failed suicide is nothing more than cowardice. Did that mean that my life wasn’t worth it? No, it meant that I had a friend that was not actually a friend. But nobody tells you that that might happen and that those people are assholes (sorry Mom). They don’t tell you what to do when it actually happens.

So I’m urging anyone who reads this, particularly parents, to keep the dialogue open. Tell your kid that getting help is nothing to be ashamed of. And please, for the love of pasta, don’t tell your child that they just need to pray and it will get better. Because more often than not, that is not the case. Sometimes God has a reason for these experiences. But sometimes a kid needs some help to get through it. Take things seriously. I can tell you, as a kid who was occasionally bombarded with question, teens will get really annoyed. But in the long run, it’s better to take care of someone than to modify your actions to appease them.

Don’t make emotions, illness, illness, psychiatry, and struggles a taboo topic.

Suicide rates are always rising, because people don’t know.

Their friends make jokes about it and they laugh along.

But if someone is trying to tell you something, even if it’s through sarcasm or an offhand topic,

please listen.

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This is how it happened: The Kiss.

We’re going to play a little game that I like to call “Pretend that it’s August 23 and Lauren actually made this post on time.” Just go with it. Pretend with me.

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My beautiful boy. (:

Whether or not psychic abilities exist, I am uncertain. I am, however, certain that sometimes, our “gut feelings” (an immediate perception of a situation before it’s even happened/before you have arrived, for anyone who’s hanging out on the literal side of things) are correct. The second of August 2012 was one of those days.

Over the course of a couple of months, Elijah and I were growing closer and closer. We shared things with each other that nobody else knew, because we inherently knew that it was safe. Elijah had come to know the shame I felt about the scars that riddled my body. He had sent a text message, at some point in July, asking me if it was weird for him to request to kiss my scars. I responded honestly by telling him, “Not necessarily weird. Definitely unprecedented.” We didn’t speak any more of it.

On August 2, I clocked out of work at an awful food chain that is contained thus far to Minnesota, plus one in North Dakota. I’d be willing to bet that I reeked of sweat and orange chicken. I went home, changed, and then straight to Elijah’s house. We walked to our favorite field, to sit under our favorite tree.

Those pesky little gut feelings were screaming at me: “SOMETHING IS DIFFERENT TODAY.”

Naturally, I ignored them.

We spent an hour or so playing around with cameras and a purple plush elephant. As the laughter faded into comfortable silence, I heard the sharp intake of breath that always comes just before Elijah is going to ask or answer a question. He asked me, “What do you see when you look into my eyes?”

I hesitated for a moment before bringing my eyes to meet his. For the first time, I got to see, really see, the gorgeous green eyes. I saw how gentle they were, I saw compassion. I saw a world of hope and love. I saw pain and sadness so deep that not even he could reach them. I saw a fighter. And then I asked what he saw in my eyes.

He listed some things, but emphasized fear. He told me that some people have a beauty that permeates every bit of their being. He told me that my eyes shone, and that I was one of those people. I smiled, and didn’t say much at all. I didn’t know what to say.

As the night went on, we talked about this and that, whatever popped into our heads or dug its way into our conversation. As it got dark, we laid beside one another. I heard the sharp intake of breath.

“I still want to kiss your scars.”

“Okay.”

“Where?”

I showed him my wrist, my shoulder, my hips, my stomach. my back (No, mother, he did not see anything inappropriate). He kissed each visible scar. When he got to my wrist, he looked at the knotted mass of scars and asked me, “How many?” I told him I didn’t know. Over 100, at least. So he kissed my wrist. And again. And again. And again.

“Nintey-eight, ninety-nine, one hundred… one hundred and one.”

After he finished with each section of scars, he placed a hand over them and said, “These are not scars. They are you. And they are beautiful.”

If you don’t have scars like mine, I doubt you understand the feeling. Imagine that the action of which you are most ashamed is exposed to the world. You can cover it up, but a little slip, and anyone can see. Now, imagine that someone comes up to you. Looks at that action and shame. Really looks at it. Studies it the way an astronomer studies the sky. And then they look at you, and they smile. With nothing more than their lips and a slight whisper, they take away the shame that’s plagued you. That’s kind of what it’s like.

We laid together, my head on his chest, arms around his stomach. He told me how he’s ached for this, for the feeling that he is protecting someone, and that someone is protecting him. We laid like that for an eternity. We watched the full moon. Heard a fawn walking around us, curiously inching forward before darting away. We called her Aura.

“What are we, Lauren?”

“I uh. I don’t know. What do you want us to be?”

“I don’t know.”

So we laid for another hour or so, before I heard another sharp intake.

“I think I know what I want.”

“Yeah?”

“Can I… Can I um. Kiss you?”

“Yes.”

He giggled. I imagine  he’d turned bright red, but I couldn’t tell in the moonlight. His eyes darted away from me, and then back, and away, and back and away and back and away over and over and over again. He finally worked up the courage and then..

“I don’t know how.”

I laughed. Shook my head.

“Just kiss me.”

3

This is how it happened.

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You would fall for him, too, if you got to look into those eyes as often as you liked!

Tomorrow marks exactly one year since Elijah and I began dating. Actually, it marks a year and two weeks because of that whole change-in-number-of-days-yadayadayada. Yes, I counted. This post is not going in the direction I was hoping for, which was to tell a nice story about us. So, let’s start over, shall we?

Tomorrow marks exactly one year since Elijah and I began dating. This afternoon, we are driving to Chicago, IL to spend the weekend doing things that we both love — namely, looking at elephants and fish. I’ve decided that for each day that we’re in Chicago, I’ll write a story about our relationship — that will be five stories, folks! With that disclaimer, off we go!

The background:

My mother and I have become fairly certain that I have a sensory processing disorder. I see no reason to be tested for it, because I manage just fine. If I were tested, it would be merely to satisfy a curiosity. I just have some weird habits (luckily, not nearly as weird as when I was little and seemed convince that the world would end if our driveway was redone). Most of the habits I now have involve food “rituals,” as I call them. Things like only eating teddy grahams in pairs — one chocolate or chocolate chip, one cinnamon, never any other flavor — and always with their backs pressed together. I also don’t chew on fruit snacks, starbursts, or chocolate. Oh, and cream of wheat always has to be clumpy. None of these rituals has any logical reasoning behind them. I don’t even remember developing the habits; they’re just there.

Now, armed with the knowledge with which you have now been imparted, and also the knowledge that Elijah has
Asperger’s, which involves sensory processing issues, you are fully prepared to read on! Allons-y!

Elijah and I met on the internet. It’s a long story involving video games that didn’t work and my mom assuming that he was gay based on the friends I told her he knew when I lied about how I knew him. We met in person for the first time at my favorite tea shop. We talked for hours. I told him at one point that I’d never met someone so much like me in my life. He refused this possibility, declaring that he was simply very skilled at relating to other people.

Zoom a week or two into the future.

Elijah and I had begun to spend a lot of time together. We decided, on this particular night, to make surprise cupcakes. What are surprise cupcakes? Oh, I am so glad you asked!

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This is a surprise cupcake.

Surprise cupcakes are filled with very random ingredients. Ours were filled with things such as broccoli, grape tomatoes, gummy bears, goldfish crackers, and hot tamales. We had an excellent night making the cupcakes (if you follow the link, please ignore the acronym… It was an accident).

We baked the cupcakes, we had a great time, and then we spent the night just talking.

I have absolutely no idea how we got on the topic, but we started talking about M&Ms. I have this thing with M&Ms. I eat them one of two ways: Either one M&M on my second back moral on either side, and then chomped, or I don’t chew at all and wait for it to dissolve. Much to my surprise, Elijah shared this feeling. We ended up discussing, as you do, how frequently people say things like, “Oh yeah I do that too I always have to eat them like that,” and then promptly devour a handful of M&Ms in one bite. What people tend not to realize is that when you have difficulties with sensory processing, it isn’t a preference. If I were to eat an M&M in a different way, my mouth would feel off balance, and I would have to find a way to fix the feeling immediately. Elijah shared this sentiment. Then he asked the question:

“Okay, so how do you eat peanuts?”

Peanuts, my friends, are a tricky little thing. You see, they’re eaten much like M&Ms — one half on each second back molar. BUT that little nub on the tip of the peanut makes them off balance. So, of course, you must first use your four front teeth (top two, bottom two) to remove the nub very carefully, so as not to damage the rest of the peanut. Then, you may proceed. After I explained this to him, he just stared at me before exclaiming,

“I’ve never met anyone else who does that!”

We spent the rest of the night talking about textures, colors, lights, and sounds. Mind you, this was before the Asperger’s diagnosis. I’d begun to suspect it, but wasn’t entirely sure if it was appropriate for me to bring it up to someone I’d only met in person two weeks before.

At the end of the night, I smirked, as I so often do.

“So, do you still think we’re not alike?”
“… You have to give me credit! Everyone else that thinks we’re alike, I’m just relating to! I just couldn’t tell that you were different!”
HA! I love being right!

If you’ve not experienced this, a lifetime without finding someone who you could really, truly relate to, it is difficult to understand exactly how incredible it was to both of us, to have found someone who relates to something as simple as the methods by which we eat two particular foods.

For Elijah, he’d spent his entire life thinking that the way he felt — finding some textures nearly painful, never knowing if a food would be “safe” because he was uncertain of the texture, insisting upon certain routines, calming himself with stims — was how everyone felt. So, he never talked about it. He never got help. He didn’t need to correct the behaviors, he simply needed to understand them, so that he could find ways to function in a very unpredictable world.

For me, I’d spent most of my childhood seeming quite like a little brat. I screamed and cried and threw tantrums when certain things happened. I, too, had thought it was normal to see out intense pressure to the point of pain. I remember frequently gagging on my mother’s cooking, which I was always scolded for. I imagine now that it probably seemed like a very theatrical performance, when in reality, I simply absolutely could not tolerate the texture of the food.
It was the first time, in nineteen and twenty years of life, that either of us found someone to whom we could tell the weird habits, the things we hide from everyone else, the things that we simply tried to suppress…
and hear one of the most comforting phrases in the English language:

“Me, too.”

5

Autism as a Second Language

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The Doctor and his TARDIS, Halloween 2012.

We’d been dating for something like four months when it hit me.

The background:

Elijah and sarcasm do not mix well. They’re like oil and water — nothing particularly detrimental happens to either one when they mix; they can exist together, but they do not mesh.

On the other hand, sarcasm and I have a bit of a love affair. I am more likely to communicate through sarcasm than through accurate statements. So we developed a sign. Any time I was being sarcastic, I placed a finger upon my nose. That way, he knew whether or not to take me seriously.

It worked well.

There were far fewer misunderstandings, because Elijah didn’t have to take guesses at my meanings. Smooth sailing. Until I noticed how his finger-picking and leg-shaking increased dramatically when my use of sarcasm increased. Until I noticed his reticence. Until I noticed how confused he still seemed.

That’s when it hit me. Elijah would never tell me that what I was doing upset him. He simply didn’t know how, and was too afraid to try. So I talked to him. Asked him. So now I’m learning his language.

I’m learning the joy of flapping hands and tight squeezes. I’m learning about the significance of long-held eye contact, and how much of a gift his beautiful green eyes are. I’m learning to express emotion through actions. I’m learning to say what I mean. I’m learning to explain myself — let me tell you, trying to explain what certain common colloquialisms mean is very difficult! They’re obvious to me, because I’ve grown up knowing what they mean, but I’ve noticed how rarely I actually know why. I’m learning how to be okay with the same phrase over, and over, and over. It does not lose meaning, not to him. When he tells me, “I love you more than gushers” for the thousandth time, it carries exactly the same amount of gravity as it did the first time, if not more. I’m learning how rituals comfort. I’m learning to discuss plans, to plan out days to the minute if need be. I’m learning to ignore stares and snickers and weird looks (Okay, maybe I’m not great at ignoring those. But I’m fantastic at staring people right in the eyes, very pointedly, right before I walk over to kiss the boy I love). I’ve learned not to use passive aggression, as so many neurotypical people my age tend toward.. He teaches me every day. He teaches me what it means to love.

Autism is my second language. I’m learning through experience. Luckily, I have the best teacher I could ask for (not to mention him being one of the cutest teachers I could ever ask for…).

1

My autism.

This is my autism.

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21 years old. 6 feet tall. Stick thin, knobby knees. A lion heart with the soul of a little lamb. Gentle. Craving love and giving it freely.

The man I love and hope to spend the rest of my life with.

My beautiful boy.

You could tell me right now that he could be “cured” and I would laugh in your face.

I love every piece of this perfect boy. And not one part of him needs a cure.

0

Hello, dear world.

I’ve blogged my life and dreams and hopes and failures for quite some time now. It’s never been something I do regularly, not even something I do in an even slightly coherent way. I’d like to change that.

For a long time, since I was thirteen or so, it’s been my dream to adopt and foster kids and teens with special needs. Specifically, God has given me a heart for kids and teens on the autism spectrum. I am working toward that goal.

My name is Lauren. I am twenty years old. I am studying psychology in hopes of becoming a therapist of some sort for people on the spectrum. My boyfriend, Elijah, is twenty-one years old, an aspie, and the most beautiful human being I have ever had the pleasure of meeting.

Elijah found me struggling with some pretty heavy things. He has seen my hopes and dreams and raised me a partner who will support me and walk beside me every step of the way. We are on a journey to live fully and joyfully through our faith in The Lord and the mutual calling we have heard, to change lives, even if only one day of one life at a time.

I work as a PCA for a beautiful eight-year-old, who I will call John for the sake of his privacy. John is on the “moderate functioning” part of the autism spectrum, and he also has Smith-Magenis Syndrome as well as a sensory processing disorder.

This blog is for hopes, dreams, thoughts, and life.

I’ve never been good at starting these things, so an introduction will have to do. I’ll jump in soon.

Welcome. It’s nice to meet you, friends.