Autism and Privacy: Protecting Red with a drawing of Red, a shy-looking androgynous person

Autism and Privacy: Protecting Red

Their name isn’t “Red,” but that’s what I’ll call them. This way, I don’t have to write out “the autistic person in my family” every time I want to talk about Red. While I do want to write about Red, it’s something I do cautiously. You see, when someone is on the autism spectrum, many family members are so eager to talk about it that they forget about privacy.

A Few Things About Red

The name “Red” is short for “redacted.” It also goes nicely with the #RedInstead hashtag.

Red is somewhere between 18 and 80 years old. They have a gender, but it’s none of your business. Their height is somewhere around 5 feet and 5.6 inches, the average of the heights in my family. At one point, their hair was short. (Maybe it still is.) They like music, ice cream, and funny YouTube videos.

I want to talk about Red. After all, so many people think that having an autistic family member is a burden. Maybe, if they understood who Red is, they would see it differently. And we need that stigma broken. Too many autistic people suffer because of it.

But the more details I share about Red, the easier I make it for them to be identified. And Red doesn’t want that.

Privacy and Autism

When you look up autism and privacy, most of the articles talk about teaching the concept of privacy to autistic kids. But there isn’t much about other people respecting their privacy.

Yes, some of them don’t understand privacy. But that doesn’t mean they don’t deserve it. When we violate privacy, it has consequences.

Red has a future. They want to work and make friends. They may want to date (or maybe they’ve already met the one; I’m not telling). If I started listing Red’s medications, diagnoses, favorite songs, and life history, then people could figure out who Red is. How would that affect Red? What doors might get closed in their face because of it?

Red is a person. All people, autistic or not, deserve privacy.

The same is true for autistic and disabled kids. If their parents overshare, how does that affect them now and in the future? For example, many schoolyard bullies can use the internet. Teachers, classmates, and potential friends can too.

Once you put something on the internet, it’s hard to take it off. It lasts. It’s there when the 9-year-old becomes a 19-year-old who wants a job. It’s there when the 3-year-old becomes a 23-year-old who wants a girlfriend.

They should get to choose how much other people know about them.

How I’ll Protect Red’s Privacy

“If it were me, and I were twelve, would I want my mom telling this story to everyone I know?”

Jess Wilson

Some autistic writers encourage others to put themselves in the autistic person’s shoes. How might you feel if you were a kid? Or if it were you, would you want your spouse sharing it?

Red likes that I fight the stigma of autism. But they want their privacy. So, here’s what happens:

  • Their name, gender, age, and identifying details stay private.
  • I encourage readers to tell me if I slip up on that so I can delete it.
  • I don’t share embarrassing stuff. The family knows, not the whole world.
  • Red reads and approves everything I post.
  • I never, EVER, put my personal feelings before Red’s wellbeing.

I think Red should have the choice of who knows about their disability. If I revealed their identity, then I would take that choice away.

When I write about autism, the goal is to help Red and other people like them. If I revealed too much, I would be betraying Red.

So some details about Red will stay secret.

We All Have the Right to Privacy

I follow similar rules for my sister, Katie. One look at her face tells you she has Down syndrome, so that’s not a secret. But she still gets to choose who knows the smaller details. I don’t write about anything that might embarrass her.

While I write, I assume she’s going to read it. Normally, she likes to read it after I post. But she knows that if she wants me to delete something, I will do it right away.

It’s not that easy for everyone. If you’re writing about a child or someone with an intellectual disability, then they might not understand online safety. Their concept of privacy might be limited. So they can’t make an informed choice. In my opinion, that means you need to be more careful.

If you have a disabled loved one, I encourage you to think carefully while blogging about them. Their wellbeing must come first.

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