Friday, April 26, 2013

I’ve Just Seen A Face

DeannaMC
travelingmonkeys.org

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing Autism Acceptance posts and pictures all month long. -TPGA Editors



I’ve just seen a face / I can’t forget the time or place / Where we just met

This is not a sad story.

Two months ago, a child psychologist confirmed what we had once denied but had long since come to know was true, and thus it was that “autism” became as commonplace a word in our house as “Netflix.”

She’s just the girl for me / And I want all the world / To see we’ve met

Mmm, mmm, mmm, mmm mmm mmm

She’s helping us plan quite the celebration; it will be Madeline-themed, down to a hat-shaped cake that she can’t stop talking about. (“DADDY WILL MAKE A MADELINE HAT CAKE!” No one is happier about life than a little kid with her own cake.) But in honor of today, I’m celebrating her a little early. If you read other posts today about autism awareness, you’re undoubtedly going to come across some disquieting things. There is an enormous cloud of ignorance and stereotypes around diagnosis, labels, and what autism means in our society.  There is so much fear. But there’s none of that here. Here, close to my daughter’s heart and mind, I can talk about what was left after we turned away from the confusion surrounding an autism diagnosis:

Joy.



Had it been another day / I might have looked the other way

And I’d have never been aware / But as it is I’ll dream of her tonight

La, di, di, da di di

It’s something about Maggie’s eyes, I think. She’s often so quiet; she’s constantly observing. You wouldn’t know how active her mind is. But my grandfather saw that joy, that burning intensity she shares with those she allows into her sphere. If you didn’t want to see her, you wouldn’t–she watches from a safe perch. She protects herself. But when you see her -- truly see her -- you know that she burns with love and light.

I have never known the like of this / I’ve been alone and I have missed things

And kept out of sight / For other girls were never quite like this

La, di, di, da di di

We see her intensity and we have seen what it’s like when the world becomes too much for her. When things are too fast, and when things feel wrong, we think we can get a glimpse of how hard that sensory overwhelm can be. That part of autism is well covered and often played for tragedy points in popular media.

But what of joy? Is it not reasonable for me to believe that because she feels and senses so intensely that she is able to experience happiness on a plane that I can only imagine? I believed that before I knew for sure that it was true; I see her taking joy in things that escape my notice entirely. A sweater that I think of as simply “soft” melts under her hands; the crunchy crackle of extra-strong garlic bread with a bit of sea salt brings fulfillment to her that it does not bring to me. Her senses bring her such a vivid experience. She consumes life with vigor and gusto, and in that vitality I see that Maggie has within her an incredible spring of delight -- the capability for rapturous happiness.

So let us first be aware of this: my daughter is autistic, and she is happy.


Falling, yes I am falling / And she keeps calling / Me back again

And are we, her family, happy? Incredibly. I have written much about fear and uncertainty here and about panicking over the future. But we see now what incredible shades of privilege and ignorance we had over our eyes: that our neurotypical ideas of happiness were the only standard, and that all else would measure up and be found lacking. That she had to conform to the world to be accepted. These attitudes are not only inappropriate -- they are ableist and wrong.

My background is writing, not engineering, but even I know that a building built on uneven, unprepared ground cannot stand for long. To build that strong foundation for Maggie -- to be who we needed to be for her -- the ground first had to be leveled and the landscape permanently altered. Being good parents to her has meant ripping down everything we thought we knew about human communication and interaction, facing biases and ignorance of our privilege that we never knew existed within us, and rebuilding ourselves as parents (point number five is especially important) from the bottom up. It has hurt. It has not always been pleasant. But it has been absolutely necessary in order to see that autism is something inextricably linked to all of Maggie’s senses, and to her sense of self and the world.

We owed her full acceptance. We owed it to her to celebrate her joy, and to return her joy with our unconditional love. Maggie does not have an illness, and she is not broken. We do not seek to cure her, but to push for acceptance for her differences and for recognition for the unique, necessary worldview she offers.


To wish for a “cure” is to wish that our daughter -- who she is now and who she has always been -- did not exist and that another chapter with another child could be written instead. (If you read no other links from this post, read this one.)

And because this is not a sad story, that chapter of rejection and resentment does not–and will never -- exist. This is the story of Maggie’s face, full of intensity and happiness and anger and all the fun and flaws of human existence. She is the child I dreamed of, my firstborn; the child who was a part of my body for 41 life-altering weeks. I could not conceive of my life without her thirst for the world.

I’ve just seen a face / I can’t forget the time or place / Where we just met

So today’s word: awareness. We need a national conversation with autistic people, their friends and families, and supportive organizations to find the best way to support and accommodate those on the spectrum.

But we need more than that. We need acceptance. Accepting the true reality of her life: full, good, happy, with friends and loving family. Accepting the possibilities of her future: friends, hobbies, interests, a job, a partner or children of her own one day if she so desires. Accepting that she is not scary or sad, and accepting that her existence is not a tragedy. Accepting her joy, and never implying that if she would just/could just/if only, she might be happier or have a better quality of life. She already is happy; she has a good life. So do a lot of people who go with their humanity unrecognized and unacknowledged. 

She’s just Maggie, our Margaret Kelley: an autistic person, and a happy person.

Let Maggie be the face you remember and talk about today. Remember that she is not the one who needs to change.


Remember that her story is a happy one … and that if the world is willing to think “acceptance,” it will stay that way.

She’s just the girl for me / And I want all the world to see we’ve met



*Italicized lines are the lyrics from The Beatles’ “I’ve Just Seen A Face”

A version of this essay was published at travelingmonkeys.org.