Tag

disclosure

Anxiety explosion

“It’s OPtimism. It means when you are optimistic.” I hear Tyler say.

“No. AUTism is different.” My ears perk up. I tune in.

“Do you have autism?” A third voice. Nick.

“Yep.” says the matter-of-fact OPtimistic (and autistic) kiddo.

I miss a few exchanges while I answer a very important Lego question from another group of kids playing. When I tune back in, Kayla is half-giggling, half-babbling.

“Autism means you’re stupid! You have a dumb brain. You have a cuckoo brain.” I catch her eye and I know, this is not her core. This beautiful, smart, hilarious fourth-grader doesn’t believe this. I know she doesn’t.”

I casually join the trio. “Kayla, what were you talking about? I couldn’t hear you from over by the Legos.”

She shrieks. “Nothing! I wasn’t talking about anything! I’m sorry I’m sorry I’m sorry! Just forget it!”

I try another way. “Oh, okay. I just couldn’t hear everything. Were you talking about autism?”

Another shriek. “Yes but I didn’t mean it! I was just kidding! I’m so sorry! I’m sorry!” Tears roll down her cheek.

Nick watches, fascinated. He is the one who has been asking kids for weeks if they have autism, trying to get a dialogue going. I think that maybe it’s his way of trying to understand himself. Because he is, certainly, autistic. Nick oh-so-helpfully says, “Oh, so you’re autistic and so is Tyler. That’s why you both have meltdowns.”

Kayla is quiet, and she looks at me. Tyler keeps building with his blocks. So, I answer. “Well, autistic kids can have meltdowns. But so can people who aren’t autistic. I’m not autistic and I’ve had meltdowns before.”

Kayla chimes in. “I have meltdowns sometimes! Really big ones where I can’t stop running in circles. It’s like a tantrum kind of.”

I continue. “So autism is not a bad thing at all. It just means that your brain is different. So some things might be easier for you, or harder for you.”

“Right,” says Kayla. “And you might have trouble learning or trouble making friends.”

“You might,” I reply. “But a lot of people have trouble with those things, and they’re not autistic. So if you’re autistic, does it mean you’re stupid?”

“No!”

“Nope. It doesn’t at all.”

Later, when we’re all finished playing, we go find parents. I check in with Kayla’s mom, tell her about our conversation. She’s worried. “I just don’t know what to do. She’s known about her diagnosis for over a year. And I think that often she feels good about herself, but sometimes at school….she just doesn’t. She knows she’s different, regardless of how high-functioning she is.” We talk a little bit more. Then I turn to Kayla. She’s standing, staring into space, tears rolling down her cheeks.

“Kalya?” I ask softly. In a flash she is on the ground, wedging herself on the floor, with a table and chairs in front of her. She’s sobbing. “I’m sorry I’m sorry I’m sorry! Everyone hates me because of what I said! I’m stupid and dumb!”

“Do you mean when you said kids with autism have cuckoo brains?” She nods.

“Ohhh. Guess what, though. Nobody was mad at you at all. Everyone knew you weren’t being serious. And I know you weren’t being serious. And I know that kids with autism are actually really smart.” she starts to nod, but another wave sets off and she lets out a shriek.

“No! My brain IS stupid! My brain is wrong! I AM dumb! I am so mad at myself for saying that!!!!!!” I kneel down, not too close, and say very softly, “What can I do to help you right now?” She says that she just needs to hide there and cry. Which makes perfect sense to me, truly. So her mom says, “Okay, Kayla. But soon let’s go home. And you will feel better. Right now you are worried about it, but when you feel better you won’t be.”

Her mom and I talk a little while longer, and eventually Kayla pushes the chair and table back and stands up. “Okay,” she says. “I am ready to go. Maybe when we get home I can cry some more in the dark.” She climbs into her mom’s lap and says, “hold me.” They rock and hug. I catch her mom’s eye, and her mom says to me, “Thank you. We’ll be okay. We’ll talk more about it when she’s calm.” Nobody knows their child better than a parent.

As I leave them, her mom is engaging Kayla in one of her favorite movement activities. Kayla is smiling, her body is relaxing, and she is calm.


My heart broke for Kayla, tonight. Because I know what it’s like. To believe something awful about yourself. And to have moments of clarity, but lose those moments when anxiety roars. To cycle back and forth, around and around, unable to let go of a thought. To not be able to trust the truth that you know in your calm moments.

But I think what we have to do is exactly what Kayla did, and does: allow ones we love and trust to help us during our storms. Be real. Let ourselves be vulnerable and cry and shriek if we need to. Know that we can cry in a dark room. Accept help from ones who won’t judge us. And listen to the truths as soon as our brains are quiet enough to believe them again.

Issues of disclosure

I disclosed my eating disorder history to my supervisor the other day. Since it’s no longer what I deal with on a daily basis, it’s no longer an identifying feature of myself. People who have met me in the last few years don’t even necessarily know that I used to have an eating disorder, unless for whatever reason they asked, or it came up. Anyway, that being said, I disclosed because it was relevant. I don’t tell people just to tell people. But I do bring it up when I think it might better a person or a situation. And in this case, with a bunch of professionals sitting around trying to understand a student and what was going through her mind as she struggles with her own eating disorder, and with them all asking, “What is she thinking?” and “I wish we knew what was going through her mind,” I disclosed. And it ended up being helpful to them.

It really made me think, though. Even when I do disclose now, I’m often hesitant and nervous because people generally make one of two comments right away:

  1. So, how much weight did you lose at your worst? and
  2. But you’re thin, you really don’t still have an eating disorder?

I used to be really defensive when those comments were made-and oh, were they made. Because, I didn’t lose much weight at all at my worst. Which speaks to the fact that eating disorders are not about weight. And yes, I am thin. So is my mom, my grandma, and my entire family. But I am engaging in a healthy lifestyle now. I do not have an eating disorder. And I’d find myself almost needing to prove to people this, purposely eating in front of them, trying to convince them that I was healthy.

Until I kind of decided, screw it. I am healthy and I know it. And that’s what matters. And if and when people do ask these questions, during the one or two times a year that my history comes up, instead of getting angry, I’m going to educate. To let them know that actually, them having those beliefs just perpetuates the eating disorder stereotypes. And doesn’t help anything at all.

My supervisor’s reaction was: “Ohhh. I’m so glad you got better. What helped you get towards recovery?” And I wanted to hug her for that response and I told her how meaningful it was.

Just proves how much more education needs to be out there.