i like being autistic

September, 2010

After a day spent immersed in capital ‘A’ Autism – as opposed to a day immersed in little ‘a’ autism which would simply be, well, ya know .. a day – I wondered what she’d taken in.

Did she hear the speaker at the Walk that called autism a ‘disease’? Though it causes much dis-ease in our world, it is actually a disorder.

Did she hear the young adult standing in front of us repeating over and over – and over – again, “Were at the Autism Walk. That’s for me. We’re at the Autism Walk. That’s for me.”?

Did she hear the mom explaining to her grumbling son that he needed to suck it up ‘because we are walking to help the sick kids’?

Did she see the bracelet that her big sister insisted on buying that said, “I love someone with autism”?

Does she remember me talking to her about it before? On other nights, snuggled in the dark, just like this.

Did the word sink in?

Did she connect it to herself? To us? To our family? To who we are?

Does it have any meaning for her at all?

Did she notice it that day? Over and over and over again?

“Hey, Brooke,” I asked into the darkness, trying to sound casual.

“Yes, Mom?” God, how I love that clipped little version of ‘Mom’ – somewhere between Mum and Mom – the word so wonderfully hers.

“Do you know that we go to the Autism Walk because you have autism?”

I was trying hard to sound cheerful – to keep the words light.

It is so desperately important to me that she not grow up internalizing our demonization of autism. Someday she will understand these words. She will know that it is a part of her. Then what? I can’t let her hate such a huge part of her life.

She didn’t answer. She was too busy fiddling with my hair.

I know better than to think that because she isn’t ‘paying attention’ she doesn’t hear me. She may process it three days, three months or three years from now, but I’ll be damned if she’s not taking it all in.

“Baby, do you know that you have autism?”

I’ve asked this question before. I’ll ask it again.

It’s so important to me that she hears it from us and doesn’t take her understanding of autism from a man at a podium shouting for its eradication. It’s far too easy for the lines to get muddled, for the leap to take her where I dread that she might go. Where does my autism end and I begin? If I have autism does that mean that I AM autism? If autism is evil then I must be too.

Add that internal monologue to the list of my greatest fears.

“Do you know what that means, Brooke – when Mama says that you have autism?”

“Nope.”

She answered. On some level, I was getting through.

I measured my words carefully. I knew I didn’t have the luxury of paragraphs. Our world demands that a sentence – maybe two – suffice.

“Well, autism is what makes some things hard for you, baby. But it’s also part of what makes you special and wonderful and well, Brooke.”

“Yup.”

“A lot of kids at the Walk today had autism too. There are LOTS of other children just like you who have it too.”

She has the right to a community. If I can help it, my girl will know she is not alone.

“So when I wake up, the tooth fairy will bring me Blue from Blue’s Clues just like my Periwinkle. And then I will have Blue. Blue will be just like my Periwinkle.”

I smiled at her, though she couldn’t see me.

“Right baby girl, I’m sure she will.”

She’ll be ready someday. In the meantime, we lay the foundation. We demystify the words. We own them. It’s a place to start.

I stole a kiss before her head disappeared under the covers. She popped back out with a giggle and threw her little arms around my neck as we went through the charade of choosing a number for the nightly countdown. In Prairie Dawn voice, we counted to thirteen. By odds. As always.

We’ve got a long time to wade through this stuff together. One sentence, one bedtime, one Walk at a time. We’ll get through it.

And wouldn’t you know it? In the morning, under her pillow, there was Blue.

Yesterday

It is Father’s Day and, at Luau’s request (and my delight), we’ve come to the beach.

Katie is happily jumping waves (though she will later claim to have hypothermia when she finally gets out of the water, because at thirteen one doesn’t just “get cold”), Luau is enjoying the rare opportunity to relax with a book, and Brooke and I are walking through an intricate network of tide pools on our way to as far as our legs will take us.

She begins a conversation in the middle, as we do. She asks about her friend, Ben, a boy whom she has known since preschool. He will be attending the same middle school that she will next year, but will not be in her classroom, which is designed specifically to serve students on the autism spectrum. (Read more about the program HERE.)

“Why isn’t Ben autistic?” she asks.

I try to squelch my startle reflex. The word is beginning to sound so natural on her tongue. Autistic. After all these years of us so purposefully using the word, she is beginning to make it her own. It’s beautiful.

“Hmm, well, he’s just not, honey,” I say. “Ben has something called Down Syndrome.”

“What’s that?” she asks, pushing her toes into the soft sand and kicking the clumps ahead of her as we walk.

“Down Syndrome? Well, it’s when someone has an extra chromosome.”

“Chromosome?” she says.

“Yep. That’s one of the parts of us that makes us who we are. And Ben has an extra one.”

“He won’t be in my class because he’s not autistic,” she says. This has been months in the processing.

“That’s right,” I say. “But he’ll still be in your school.”

“Where’s his class?” she asks.

“I don’t know, kiddo,” I say. “I can call his mom and ask her.

“Do that,” she says.

We walk, sloshing through ankle-deep water. “Our feet are swimming!” she says. She stops, turning to watch something I don’t see and then we’re on the move again.

“Maybe I can have lunch with him,” she says. “In the cafeteria.”

“That’s a great idea!” I say. “I’ll bet he’d love to have lunch with you.”

“Because he won’t be in my class.”

“Right, he’ll be in a different class.”

“My class is for autistic kids.”

“That’s right.”

“But not Ben,” she says.

“That’s right,” I say. “Because he’s not autistic.”

“Who else is not autistic?” she asks.

I love that sentence. Not Is there anyone out there like me, but Who isn’t?

“Well, I’m not,” I say. “Neither are Daddy and Katie.”

“Who else other than the Wilsons and [Ben’s family]?” she asks.

“Hmm, well, lots of people,” I say. “There’s Rachel and Zoe and … hmm … can you list some of your friends from your class?”

“There are lots of them,” she says.

I put my arm around her and snuggle her into me as we walk. She wriggles out of the hug, squeals and runs toward the next tide pool, giggling into the wind.

“Oh, and there’s Jeni and Sam. too,” I say. “They’re not autistic.”

“Why not?” she asks.

“I don’t really know,” I say. “Some people are autistic and some aren’t. Just like some people have blond hair and some don’t. Can you think of someone with blond hair?”

“Cassie!” she says.

“So Cassie has blond hair. Do you have blond hair too?”

She pulls a tress of hair in front of her face to be sure. “No,” she says, “I have brown hair.”

“That’s right,” I say. “She has blond hair and you have brown hair. That’s just how you both were born.”

“What are the names of the kids on that Elmo’s World that you like?” I ask. “Where one can hear with her ears and the other is Deaf?”

“Alex and Emily!” she says. She loooooves Alex and Emily.

“So it’s like that too. Emily can hear sounds with her ears while Alex can’t, so he feels sounds with his hands and reads lips with his eyes.”

“And they play Go Fish!” she says.

I smile. The important details. “Yup, they play Go Fish. And just like some people are hearing and some are Deaf and some have blond hair and some have brown hair, some are autistic and some aren’t.”

I can’t believe how long this conversation has gone on. We’ve never, ever talked about this before, or hell, anything even remotely like this — wholly unscripted — for more than a sentence or two. I want to squeal and run off giggling into the wind.

“And Alison and Devon,” she says. “Alison can see and Devon is blind,” she says.

“Exactly!” I say, silently thankful for Elmo and his diverse group of friends. “Everyone is born different.”

I realize we have a real-life perfect example. “You know who else is autistic?” I ask.

“Who?”

“James.”

“He is?”

“Yup. But his twin sister, Sarah, isn’t.”

“She’s not?” she asks.

“Nope. He is and she’s not.”

“Oh, that’s not good,” she says gravely, meanwhile creating a perfect arc of water with her big toe.

“It’s not?” I ask. “Why is it not good?”

I wait, but she doesn’t answer, so I ask a different question.

“Is it not good for her or for him?”

“For her,” she answers, as though it were as perfectly obvious as the blue sky above our heads.

“Do you think she might be jealous of him?” I ask.

“Yeah,” she says. “I like being autistic.”

I want to stop time. Record the moment. Promise to remember it. 

“You do, baby?” I ask, though it’s not really a question, it’s processing-time filler. “That’s awesome. What do you like about being autistic?”

We’ve talked about it for years. We’ve used the word. We’ve talked about how it is one part of what makes her who she is. How it must be an awesome thing because it’s part of her and she’s awesome and so, well, it’s only logical, right?

We’ve been saying it for years — purposefully planting the seeds, but never knowing if anything was growing from them. Never knowing if the words held any meaning, never knowing if there was really a point. But insisting on believing that there was. That the words would some day sprout into cradles for ideas and knowledge and understanding and community and self-acceptance. Believing, no matter how far-fetched it felt (and God, it felt far-fetched) that someday we’d be here, walking along a beach and she’d say, “I like being autistic.”

And yet still, I wonder if she understands. She is about to laugh at the idea that she doesn’t.

“I like it of my remembering,” she says.

I want to pick her up and spin her around. I want to shout to the horizon, “SHE GETS IT. SHE GOT IT ALL ALONG. BELIEVING – EVEN WHEN IT FELT ABSURD TO BELIEVE – WAS THE RIGHT THING TO DO. SHE. GETS. IT.”

I don’t.

“You mean because you remember things that other people don’t?” I ask.

“Yeah,” she says.

She starts to giggle.

“Like, “What did I say when I had to go to the bathroom?”

It’s a script. A memory of when she was little and had to get an answer to the question, “Is Winnie the Pooh a boy or a girl?” before she could go about her business. The time that she asked her Oomah and Oomah didn’t know. We play out the script. And we giggle into the wind.

Believing will always be the right thing to do.

 

 

 

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{Image is a photo of Brooke dancing in a tide pool yesterday, as you do.} 

 

 

 

 

 

 

37 thoughts on “i like being autistic

  1. Yes to everything here w/a special shout-out to Elmo and those diverse friends of his! 🙂

  2. THIS. One hundred times, this. It made me cry happy tears this morning. I have been telling my son for years about the amazing way his autism makes his brain work, and how wonderful it is that he remembers every single thing he has ever seen, and how thankful I am that he can always help me remember where the car is parked or how to get somewhere that we haven’t been in many years. I too am waiting for the day when he demonstrates to me that he “gets it”……but truly, in my heart, I feel that he does. Thank you so much for your wonderful words. I am so happy to have discovered your blog.

  3. This is delicious and fabulous and wonderful. Thank you for sharing this with us. We keep the dialog open here, too, and I hope that one day my son and I have a similar conversation.

  4. this is beautiful, and so full of hope.
    We are also working to sew these seeds with our kids, so that they will know that every part of them is great, just as they themselves are great
    Thanks for sharing

  5. Heart singing… Damn, I love this. Every part. I kind of don’t want to sully it with a comment other than that, but I, you know, will. I’ve been talking to Jack about his autism since he was five and explaining that all brains work different and the way his brain works has a name—autism. One day maybe three years ago, we were in an OT waiting room and there was a child with Down syndrome working diligently to open a gate that closed off a hallway. “Is [name] autistic?” Jack asked. I asked him why he thought he was autistic and he responded, “Because he’s curious.” Moments like that, when your kids see wonderful things in themselves and understand that it comes from the way their brain is wired and there is no judgement or feeling or feelings of less than…that’s what it’s all about. Thank you for this story. Very clearly this topic is a big deal to your girl for her to talk about it so much. I’m so glad she feels so good about herself.

  6. This is wonderful. We talk about Baguette’s autism all the time. We tell pretty much everyone, and we’re so grateful for how accepting and supportive people are with us. While we haven’t really discussed it with Baguette, we talk about it in her presence. We don’t want to hide it from her.

    How old was Brooke when you first started explaining autism to her?

  7. LOVE LOVE LOVE LOVE LOVE LOVE!!! Everything you have done lead you to that moment! So happy for you, for Brooke!!

  8. This is so cool! I talk about autism openly, but haven’t really discussed it specifically as it relates to my DS. We have talked about people being different, etc. Currently, he’s at the “invisible”/quirky level.

    I don’t think dad’s entirely comfortable with it – because DS isn’t “that different”. They’re very similar, I think, which is part of it. Dad doesn’t often see DS in truely peer-oriented social situations – that’s where the differences show up. And we have a family member that used their learning disability as an excuse for anything, which dad really doesn’t want to happen. What can you do to help out your spouse in this situation?

  9. WOW! An incredible conversation between you two. You had me riveted the whole time reading it. You and Luau are such terrific role models for ALL parents everywhere of every time. Blessings.

  10. Pingback: i like being autistic | a diary of a mom | My Autism Site | All About Autism — My Autism Site | All About Autism

  11. A million times Yes! We have always talked openly about how our son was autistic around him and at 18 he proudly owns it. He’s going off to college this fall (well, we’re kind of going with him – we’re all moving to the same city), and he says he wouldn’t know how NOT to be autistic.

  12. The only word that I could come up with for this was like, “heartwarming,” but that so doesn’t do it justice, so I’m going with heartscorching.

    I love these moments because I feel them waiting in all the other times before this one. Mostly because I know how I know things without being able to say them, and how I know things without being able to find them. And how sometimes you have to take a really roundabout path in conversation just to find the things that I know.

    And I’ll admit to finding the whole “Does my kid know that they’re autistic?” thing kind of odd. Obviously I appreciate the importance of having a label for yourself, and of knowing that being different is okay, and that even if you’re different, you have people like you (Jess, I continue to be floored by how wholeheartedly you guys commit yourselves to fostering these ideas for Brooke). But I mean. Like. It’s kind of like saying “Does my kid know that they’re them? And that being them means being different than other people?” And like. Yeah. They do. ‘Cause they’re a person. The ability to refer to one’s identity using a widely recognized term is a very important social (and political) skill. But I always wonder why parents are so invested in knowing that their kids have learned the world’s language for who they are, and not in sharing their kids own language for who they are with the world.

    (Also can I please just say that when I was reading this, and I came to the part where she was talking about how she remembers more things because she’s autistic, and she goes “What did I say when I had to go to the bathroom?” I was like “I remember! Is Winnie the Pooh a boy or a girl.” And grinned. Because I’m autistic.)

  13. I always hate it when someone calls autism a disease or use autism awareness events to talk about curing children with autism. I don’t want to be cured. I was diagnosed very late in life, at the age of 16 and 1/2, and it was very hard for me to understand where it began and ended. I didn’t know how to react to what I was learning because when it came down to the characteristics I exhibited, all of the things that frustrated me and I didn’t understand (my lack of facial expressions, poor eye contact, difficulty conversing with people my own age) were all put in the same category as the things that I always liked about myself and I found special (my great memory, my fanatic obsessiveness over things I really liked, my overly sensitive hearing, feeling, tasting, and smelling). All of a sudden, what I thought made me special and unique was autism. And autism was a disorder. And a disorder is something that is wrong with a person and they shouldn’t have something wrong with them. So these characteristics seemed to me to be something I “shouldn’t”. Nobody ever said that to me, not the doctors or my mom, but this was how I broke down my diagnosis as I researched it on my own.cit wasn’t until I read Aspergirls over that summer that I was really able to come to terms with it. I like these things about me. I like having Autism Spectrum Disorder. I don’t want a cure. I want awareness. I want people to understand. I want studies to focus on how we can cope with our quirks to be able to function in our day to day lives. I don’t want to get rid of autism. I don’t want to lose autism. I don’t want to lose me.

  14. So teary. She is amazing. I only hope I have the privilege of meeting her one day! I just adore her language. She has a way with words that not many people do.

  15. You are a great mom to your autistic daughter. I’m sitting here in front of my computer with tears in my eyes because in my mid-20s, I’m slowly recognizing the autistic woman I’ve always been. You’re showing your daughter how to affirm herself.

  16. Pingback: She Needs Her Autism | Ever So Gently

  17. Wow, I loved learning about the world Brooke is living in. I myself have a good friend with Down syndrome, as well as as few with Cerebral Palsy, AD/HD, and so on. I’m glad to see she is embracing her identity and how she seems to have a multi-abled group of friends, that she seems to be enjoying.

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  19. I “like it of my remembering” too. Being autistic IS awesome. I have been recently diagnosed at the age of 32, and am only now realizing how much my autism has affected my life, sometimes positively, sometimes negatively. However, if a magic potion were invented to take my autism away, I would choose not to take it. Because I like being autistic. I especially love my memory. 🙂

  20. Pingback: “her S” Diary of a Mom: #AutismPositivity2015 | Autism Positivity Day Flash Blog

  21. Pingback: Джесс Вилсон: «Ее С» | Нейроразнообразие в России

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