I have the privilege to talk to plenty of autistic teens who follow me as they discuss their lives with me. Few things are more wonderful than watching them learn and grow and become confident in who they are.
And as they delightedly embrace who they are, sometimes I feel a bit of worry.
Because while I smile when I’m hearing a girl tell me about her first date with a cute girl, a nonbinary teen delightedly embracing their new pronouns, or a teen sharing his thoughts on atheism and the nature of the universe… not everyone feels the way I do.
And I hope that these kids will never have the misfortune of some judgmental relative or school bully or future would-be employer happening across these comments and identifying who they are.
That’s why I strongly encourage autistic/disabled teens, and possibly adults too, to protect their privacy online.
It’s easy to leave clues online about your true identity, including:
- Your real name (first and/or last)
- Email addresses can share this
- Your birthday
- The names of your family members
- And ages, birthdays, and appearances
- The name of your school or workplace
- Your city or state
- Your appearance (such as a photo or a detailed accurate drawing)
- Detailed family history (which family members might recognize if they saw it)
This means that anything you type can be traced back to who you really are.
Sometimes people might want to be extra cautious, like if they have family that snoops around or if they reveal a lot about the degree of their impairments (e.g. “I still wear diapers at night”).
In my opinion, it’s OK to make up inconsequential details so that you have deniability if your cranky uncle shoves a laptop in your face someday and asks “IS THIS YOU?”
I think it’s okay to make up superficial details like:
- Your hair color, eye color, or general appearance
- Your siblings’ names (e.g. calling your brother “Noah” when his name is actually “Ron”)
- Inventing an extra sibling who’s off in college or living abroad
- Pretending you still live in a region you no longer live in (e.g. saying “I live on the East Coast” when you moved away two years ago)
- Changing a detail of major family history (e.g. saying “My mom is disabled from a car accident” instead of “My mom is disabled from a motorcycle accident”)
Make this fake info easy to see, so if anyone from real life asks, you can say “Really? You think that girl with blue hair and a nose piercing is me? As if my mom would ever let me do that!”
But I don’t recommend doing things like:
- Using a stock photo and pretending it’s you
- You could get caught if someone does a reverse image search or recognizes the photo
- Instead, use a drawing, either drawn by yourself or a loved one, or made with a creator like Picrew
- Pretending to be a member of a minority group you aren’t a part of
- This can be insulting/upsetting to members of that group if they find out you lied
- You could get into hot water for doing this too
Said too much? It’s not necessarily too late
I know you’ve been told many times “Once you put something on the internet, it’s out there forever.” And that’s usually true, especially if it’s something people are looking for.
But sometimes you can erase (or nearly erase) things that nobody actually cares that much about.
So if you haven’t written much on a subject, it may be possible to do things like:
- Switching to a pseudonym
- You can say “Oh, I don’t really like my old pseudonym so I invented a new one” even if you were actually using your real name before
- Switching to a sibling pseudonym
- You can say that your sibling didn’t like their “old pseudonym” so you offered to let them pick a new one of their own
- Making a change to things that sometimes change naturally in life, like
- Where you live (but make sure it’s a place you know about so you can be realistic about it)
- Your hair color
- Your major at school or career plan
- “Retconning” details that you wrote little or nothing about
- I’ve done this and nobody has said anything so far
- Most people have more important things to think about
- But if someone does ask, you can say “I’d rather not talk about it” or “I’m being more careful about what I reveal online”
- I’ve done this and nobody has said anything so far
If someone does ask, you can even link them to this post to help them understand.
I change some personal details too
I’ve taken a few steps to camouflage my identity online. I keep certain details private and I do change a few potentially identifying details.
My sister, Stella, means so much to me. If potential employers knew I’m autistic, it might affect my ability to provide for her during adulthood.
So I’ve changed a few details and been selectively vague. It helps me be more honest about the things that matter. And so far, basically everyone has been kind and understanding.
Other potential leaks
Sometimes “harmless” things could accidentally give away info that’s best kept private.
- Siblings and friends, while amazing, can be security risks.
- Don’t share your username with younger kids or people who tend to violate your privacy (by accident, when upset, or under any circumstances).
- Even well-meaning people (especially kids) can comment thoughtless things like “Have fun at UCLA, Moesha, and don’t let Professor Hayes get you down!” on a post from your supposed-to-be-secret identity.
- Stella once left me a comment like this. Yikes.
- Be very careful about posting photos under your fake name. Look closely and crop judiciously. And seriously consider posting zero pictures of yourself online.
- Photo metadata includes info about your phone/camera brand and model.
- Even generic outdoor photos could be recognized by a neighbor.
- Avoid landmarks or identifying indoor furniture.
- This goes double if you post photos under your real name online too.
- Doxxing is a risk. Most teens are at low risk, but it can happen.
- Online stinkers target people they don’t like.
- Doxxers may target people who act confrontational, post strong opinions, or get into arguments with trolls.
- Women and minorities are at even higher risk.
- Being polite, wording things delicately, and ignoring trolls can help reduce your risk, though there are no guarantees.
- And doxxing is the doxxer’s fault, not the victim’s.
- Use a VPN to help conceal your location if you’d like.
- Seriously consider using a VPN if you use WordPress, because when you comment on other people’s blogs, the blog owner can find out your location and email address.
Am I overcautious? Maybe. (According to most of my family members, I am overcautious about everything.) But I am acutely aware of the reality of disability discrimination and I really need stable employment.
You rarely regret being too careful. But you can easily regret not being careful enough.
What if people ask about it?
Mostly I find that people are pretty easygoing, but it is possible that someone will get curious and ask questions.
Most of these people mean well. They might just want to get to know you better or they might be feeling confused because they remember you saying something else.
Don’t know how to respond? That’s okay! I’ve spent years studying assertiveness skills and I have a few ideas for you.
When someone asks about a detail you don’t want to reveal, it can help to:
- Briefly explain your motives
- You can say outright that you want to be cautious about privacy
- Or say that you aren’t comfortable answering a question due to safety concerns
- You don’t have to elaborate at length
- Don’t pretend to be consistent if you’re not
- Everyone is inconsistent sometimes; it’s not a sin
- Intentionally lying about what you’ve said in the past is sometimes called “gaslighting.” While it’s not always meant in a bad way, it’s not nice and it can negatively affect the other person
- Model positivity (optional)
- Say that you’re happy about it or it helps you feel safe
- Encourage them to respond positively
You can totally set a boundary in a positive, pro-social way. And don’t worry, I’ll totally share examples.
Examples of answering questions
- “Why does your profile say you have brown eyes? I thought you said earlier that your eyes are green.”
- “I make up some personal details to for online safety reasons. I thought brown eyes might be fun!”
- “An anti-LGBT relative has been trying to spy on all my accounts. I’m changing some personal details so I can have peace of mind.”
- “You said you live in southeast Japan, but you also said it’s a sunny day and the radar shows heavy cloud cover all over.”
- “Sorry for the confusion. I try to keep details about my location a little vague for online safety reasons. Thanks for understanding.”
- “You caught me. I change some personal details online to help protect my identity. This helps me be more open and honest about the things that really matter to me.”
- “Why are you changing your pseudonym?”
- “My old one didn’t feel right. I thought of this new name and I fell in love with it.”
- “I needed a change. Honestly, I’m really excited about my new name!”
- “I wanted something that felt more like me.”
- “You need to tell me the truth!”
- “Online safety is very important to me. While I trust my friends, I don’t trust everyone on the internet, nor would I want to be vulnerable if my private messages got hacked somehow. This is how I feel safe online.”
- “There are some things I’m not comfortable sharing in general. I’m sorry if that bothers you.”
- “I’m sorry. I feel like I might have blown your cover by asking.”
- “It’s okay. Asking questions isn’t a crime.”
- “I doubt many people noticed. If you’d like, you can delete the comment where you brought up that info.”
- “Don’t worry about it. If you’d like to help me, then just privately let me know if you ever see something about me that you think I should take care of.”
Most people will respond well to an honest and positive explanation, because most people want to be friendly and reasonable. (And in my opinion, many people are good at heart.)
If you’d like, you can even show them this article.
If someone is pressuring you or giving you bad vibes, you can always block them or ask a site admin for help.
Here’s what I recommend to all autistics and disabled people, especially minors. Of course, you don’t have to do as I say. But you can consider it.
I recommend that:
- Before you have stable employment (and perhaps beyond that too), only identify yourself as disabled under a fake name.
- And consider faking or not disclosing identifying or inconsequential details like your appearance or general family history
- Be doubly cautious if you have snooping family or if you discuss having significant impairments
- Never offer details of your location. Stay very general (e.g. “I live in the eastern US” or “I live in Ireland”) and think before posting.
- Choose which real-life people know about your online identity.
- Don’t post photos, or crop them very carefully.
When in doubt, play it safe.
This concludes Luna Rose’s Super Careful Online Safety Blog Post.
Your safety comes first, especially in terms of protecting your future. And I want all of you to be able to preserve that joy of being yourselves without fear of some judgmental person ruining it.
Footnote: I have the ability to edit and delete comments left on my blog. If you ever said anything you regret sharing, talk to me, and I can fix it for you.