dear amy and dean

The back story

Dear Amy and Dean,

I get it. That’s what I’m writing to tell you. That I get it. Well, partly. That’s a good place to start, at least.

You see, I too am the mother of an Autistic child. Just a note, I use the term Autistic very purposefully out of respect for her and her Autistic peers, something that I hope you’ll take the time to read about here and here and here. Make sure to click on the links to Autistic writers within those posts, okay? Cause that’s the important part. 

Anyway, I, like you, want to make the world better for my kid. I, like you, have chosen to take to the Internet as part of my quest to do that. And I, like you, have royally screwed up along the way.

Indulge me for a minute, okay?

As parents, we have a tendency to see our kids as frozen snapshots in time and it’s nearly impossible to conceptualize the fact that they will grow up, mature, change, grow, evolve, and do all of those things that small humans do in the process of becoming big humans. And in some ways, it’s even harder, as allistic (non-autistic) parents of Autistic children to imagine what that trajectory could look like. (The good news is that we don’t have to. Our kids will show us.)

But all of that said, I know that when Autistic adults come by to tell us that we’re getting it all wrong (as we inevitably will sometimes) it can be really difficult to immediately understand that they have every right to say what they’re saying (and anything else they want to say) and that we have an obligation to listen. But that is the case. Because no matter how different they may be from our kids right this very second, they are our children’s peer group. (Psst, they ARE different from our kids. They’re grown-ups and our kids are kids. But they’re Autistic grown-ups who once were Autistic kids (some verbal, some non-speaking) and that matters. A lot.)

When we take on the mantle of advocacy for our kids, especially when we purport to carry the banner for “autism” (which is really Autistic people because autism doesn’t exactly walk into a room by itself but rather is an integral part of a human being) we also take on a huge amount of responsibility, not just to our own children, but to every Autistic person about whom we are, intentionally or not, appropriately or not, purposefully or not, representing.

It took me a while to get this. I didn’t start out here. From what I can see, your beautiful little boy is very young, so you haven’t been at this very long and, that being the case, I can understand how it may sometimes be tough to see the forest for the trees. But when you actively seek publicity as “autism advocates,” it’s kind of like driving a car. The cop isn’t going to let you off of the ticket when you get into an accident after running a red light just because you didn’t read the driver’s manual and you didn’t know you were supposed to stop. You are responsible for knowing – or, at the very least, being open to reading the manual, and you are responsible for whatever harm was done in the wreck.

That said, it seems you’ve wrecked pretty hard, and, again, I’ve been there. I have no doubt that you meant well, just as I did when I tripped over myself trying to help my child in ways that turned out to be anything but helpful, when you started up the #silentselfie campaign. Autistic activists showed up to tell you that it was fraught with hurtful symbolism and that, ultimately, it did far more harm to them than good. That it was dehumanizing and demeaning, That rather than empowering your son, it contributed to silencing him. That’s hard stuff to hear. Really hard. I know; I’ve been there. And I’m writing to you as someone who’s been there to beg you to listen.Not just for your kid, but for mine too.

You see, especially when our children are little, it can be really easy to fall into the trap of inadvertently prizing so-called “awareness” over dignity, “tolerance” over humanity. But what our kids really need, short-term, long-term and everything in between, is to be respected as competent, three-dimensional, fully human beings. And until we start treating their adult peers with respect as competent, three-dimensional, fully human beings, we’ve pretty much got no hope.

If Autistic adults come to us raw and hurt and angry, the worst thing that we can do for our kids is to ignore their adult brethren (or Heaven forbid, delete their comments) because their hard-earned words don’t make us feel good. If we’ve opened wounds that have created or exacerbated their raw, hurt, angry feelings, WE need to take responsibility for not doing It anymore, whatever It may have been. Because these are the people that we say we support. THEY are the ones we are advocating for when we advocate for “autism.” Deleting their comments or banning them from a page for not telling us what we want to hear is not just failing to support them, it’s silencing them. #silentselfie takes on a whole new meaning when we’re the ones literally silencing Autistic people who are trying to tell us how to (and how not to) advocate effectively on their behalf.

I implore you, if you haven’t already, to read the following.

Two posts — HERE and HERE — are by a high-profile and well-respected Autistic activist, Neurodivergent K, speaking directly to you about this fiasco. What she has to say will be hard to hear. She doesn’t pull punches with the truth, which is why she is such a powerful teacher to us and advocate to our kids.

The third post I’m going to ask you to read is an apology — HERE — that I wrote after making a pretty serious mess of my own. I know it’s long, so if you don’t have the patience to read it, let me leave you with the part that meant the most to me:

I am not apologizing for my imperfect journey. We’re all on one. But I am apologizing, sincerely and deeply, for a misstep which inadvertently, yet no less truthfully, contributed to the dehumanization of those whose humanity I have made it my life’s work to defend.
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I am not apologizing and will not apologize for listening to those people when they tell me that what I am doing is harming them. 
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To those who were hurt by my words, I am deeply sorry. I get it. I hear you. And I thank you for putting yourselves on the line day after day, calling out the same missteps again and again and yet again in the name of what is right. Sadly, I don’t doubt that I’ll screw up again, but I will keep trying.
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And to my daughter, whom I so firmly believe will be able to read all of this one day if she so chooses —
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I made mistakes, kiddo. Big ones, small ones, and everything in between. I’m so sorry for every damned one of them. I never meant to hurt you. I trust that you know that. But there’s more to it, sweet girl. Apologizing when we screw up is important, but it’s hollow if we don’t look for the lessons, find the opportunities to grow, and figure out how to do it better as we move along the path. I promise you I will never stop doing all three. For you, for your sister, for all of us. And I promise too that I’ll never, ever stop listening.
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Mama loves you.

I get it, guys.

I hope that you will too.

5 thoughts on “dear amy and dean

  1. Comment: You are once again the lucid voice not just of autistic children and/or adults but for damned good parenting!
    Question: And this is a genuine question — why do you capitalize the “a” as in “Autistic people”? We don’t capitalize Smart people, or Pretty people — we do capitalize German people, English people but….why???

  2. You are still sharing your sons private daily life. He is not an object. You banned autistic adults from your page because they advised you what you were doing was wrong and harmful. One day your son will be an autistic adult that as a child; his life was shared with the whole world. He’s too young to be on Facebook. So what benefit is it to him.? None. It benefits you. No one else. Awareness is slacktivism. If you really want “to help” him. Fight for acceptance, respect and the one thing that is inate to your child. And do it offline. Writing blogs and public posts with forced apologies doesn’t cut it. You let your page followers abuse autistic adults and you banned any of us on your page who tried to help. The reason people tried to help is so he won’t have to come across pages like yours when he’s older.

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