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What I Want You to Know About My Daughter With Autism

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There are many things I wish I could tell people about my daughter on the autisticsSpectrum. Whenever we’re out and about, I wish I could simply hold up a sign, or be able to look at people and silently give them the rundown. Out in public, I wish I had a personal assistant that could stop and inform people so they would stop staring, or making assumptions, or giving me unsolicited advice about how they parented their child with disabilities.

Here’s what I want you to know about my daughter with autism:

Yes, I know she doesn’t “look” autistic. What do you think it means, to “look” autistic? Examine your biases and do some personal education. Understand that autism is a spectrum and you probably pass dozens, if not hundreds of people a day who are autistic.

She’s what people may call “high-functioning.” You may not even know she has autism until you were trying to get her to complete a task, or introduce her to a new place with lots of stimuli, or playing a game with her.

She has the most incredible imagination. It’s an unstoppable force that is staggering in its magnitude and will take your breath away. She lives in her own universe, with one foot there and one foot here, and I wish I could see the world through her lens, if only for a second.

Her intuition is surprising. She might seem like a 4-year-old stuck in an 8-year-old’s body in certain social situations, but she can disarm you with a simple phrase like, “Do you think everyone knows they’re brave?” Or explaining that she folded the note with the words on the outside, when leaving a letter for her grandpa, who died when she was 5 so, “he can read it when he comes out of the ground.”

She’s exhausting. I can’t recall the last time I heard the word “mommy” less than 12,000 times a day. She’s like an FBI negotiator and will go to great lengths to get what she wants. She’s a heat-seeking missile. She’ll come at you from every possible angle and ask the same question in a thousand different ways, until you’re so tired and confused you finally give in, usually without even realizing it.

She’s wildly compassionate and simply loves everyone she meets within minutes of knowing their names. She hugs strangers — we’re working on that. She adores animals, but has put herself in harm’s way in her pursuit of animal snuggles — we’re working on that, too. She has zero biases, zero stereotypes, zero anger toward anyone… unless you don’t share your toys — we’re working on that one, too.

She doesn’t know how her interactions in this world affect other people. She is so entirely consumed by her own universe, and interacting with everything in it, that she doesn’t always understand that she’s accidentally kicking a stranger’s back, or that she bumped into someone and knocked things out of their hands, or if she takes something that belongs to someone else. She is simply existing, and the world around her gets in her way, not the other way around.

I love her more than I’ll ever understand, and I understand her so little that I fear I may never be able to love her as fully as she deserves. She requires constant attention, affirmation and ambition, but in return, she’d give you the sun, moon and stars if they were within her reach.

Sometimes, I believe they are.

I can tell you my daughter has enough tenacity in her little finger to accomplish absolutely anything she desires. Nothing anyone could ever say or do would deter her in such a way as to hinder her desire to get what she wants.

Parenting her is a marathon, but at sprinting speeds every second of every day. Trying to understand her is like trying to unravel Christmas lights tangled with rubber bands tangled with yarn. In spite of that, knowing her and getting glimpses into her heart of pure gold is the greatest gift. She tires me out in so many ways, but she gives me mountains of grace to start over each day. She wipes the slate clean with her gap-toothed smile every morning. She comes in for a hug — the best hug you’ll ever get — and forgiveness for my self-imposed shortcomings washes over me, wave after wave.

What I wish you knew about my daughter with autism is that she will change your life, just as she’s changed mine, if you would only welcome her just as she is.

Originally published: July 4, 2018
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