The Delicate Balance of Transparency

What we say about our autistic kids and how we say it will affect their future

The theme of this entire blog platform is geared toward helping young parents in their journey with autism. Very little of it (so far anyway) has to do with autistic adults. But one fundamental ingredient all parents need to know is that their autistic children will be adults one day. That thought has to be at the forefront of our minds throughout their entire childhood. What I really mean, is that one day they will come to recognize much of what you say about them and how you say it.

The internet has given us a place to share, vent, discuss issues, find help, and be better at parenting. And unfortunately, it has also given us a place to hurt people. If you’re here, and you have a young autistic person in your life, you no doubt want the absolute best for them. You may be active on social media and other platforms doing whatever you can to explain your situation in an effort to gain a better understanding of your circumstances. Are you doing it well, or are you jeopardizing your child’s image?

It’s a harsh question, I know. It’s a question I have to ask myself every single day. I write this blog, and I’m transparent about our journey. My son Max is the sole reason I’m here. So by default, the things I write have an impact on him directly, good or bad. Every time I write, I have to ask myself if what I say will have a negative impact on him or his future.

Whose voice does the advocating

At this stage in our journey, Max does not have a voice to advocate for himself. I gather the information at hand, assemble it the best way I know, go to great lengths to find him help for his struggles, and try to help others by sharing my family’s journey. But one day Max will have a voice of his own. In fact, it’s already coming into focus as you will read a little further. Will he ever be embarrassed at what he sees when he is older and realizes all that I have done in the vein of trying to help him or help others? When I’m at my wit’s end about an autism related issue, will my frustration ever translate into casting him in a bad light? Will others see him as a burden if I write about the heartbreaking moments?

As I’ve engaged with the autism community a little better recently, I’ve been amazed at the amount of autistic adults willing to share their feelings about how everyone talks and shares about them. Here are two key things I’ve heard from autistic adults that prompted me to write this post:

“Why should we pay any attention to an organization about autism when all they talk about is prevention and cures. Are we a broken people group that needs to be eradicated? Think about the light you cast us in when you talk about well-meaning issues.”

“I’m embarrassed at the amount of parents that will post about their child’s negative episodes. What are they trying to do? Make people understand how bad that have it? How do you think that makes us feel? We’re the ones that are having trouble explaining how we interpret this world and trying to understand ourselves why we’re having the episodes! You think it’s bad for them! What about us?!?!”

I fully understand the other side of both those challenging issues. I support organizations that are trying to figure out the hows and whys of autism and how to work around it. And I’ve been that parent that has filmed a breakdown of my own child. While I’ve never posted anything like that or even shown it to anyone besides my wife, I’m guilty for just documenting it.

What we do and say as parents has to be done in love

We have to be so careful in this journey. All of us. We desperately want to find solutions, get help, and help others. It’s hard to do without being transparent about our own lives and those of our children. What we say, and how we say it, will no doubt come back to us. Let the love you have for your child shine through the most with anything you say about them. That way, when it does come back to you, it will be rewarding.

I told Max I would be writing about autism and that examples from our home would be read by many people on the Internet – some would be complete strangers. I asked him if that would be OK. He told me he was cool with it. I asked him if he could tell the world one thing about autism and how it relates to him, what would he say. He said, “It makes me cry a lot.” When I asked him why, he said, “I don’t know.” He’s gaining his voice, and I’m proud of him. This picture is his other contribution to this post. Dang, I love this kid.

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And check out this blog post for more real world parenting stuff.

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