Think Before you Post – Autistic people deserve consent and privacy too

According to the Miriam Webster online dictionary, “consent” is defined as “compliance in or approval of what is done or proposed by another” or as “a voluntary agreement.”

These are simple definitions of a common-knowledge seven letter word. And yet consent is perhaps one of the most important concepts for people of all ages to grasp. Consent is a fundamental guiding principle regarding how we treat other people, forms the basis for many ethical standards, and is something that I believe all people should be taught from a young age as something that applies to all interpersonal interactions and relationships.

As you can tell, the concept of consent is important to me. And I believe that consent applies to all people. This is why it concerns me whenever I witness people giving away very sensitive information about the autistic people in their lives away on the internet, often times tied to identifying information like a name or picture, without first asking the person in question if it’s okay.

To be fair, posting about people (particularly children) on the internet without their permission is something that happens to people of all neurotypes, not just autistic people, but it’s especially prevalent and egregious within the broader “autism community.” You see it so often. Parents share videos of their kid’s meltdowns and panic attacks publicly to YouTube and Facebook. People write blogs detailing very personal, often embarrassing, information about their autistic relatives while including real names and/or pictures. And this sort of sensitive-information-sharing happens to autistic adults sometimes as well, not just children. I’ve noticed that it’s becoming more and more common as “autism parent” blogs and YouTube channels are increasing in number, but these avenues are hardly the only culprits for this sort of posting.

Very often the people who do this defend these practices by claiming that it’s “for awareness.” But that doesn’t make it okay. Would you be okay with someone posting compromising information about you publicly on the internet, available for future employers, significant others, and friends to find later on? For stalkers and predators to even potentially find? No? Then why do you think this is alright to do to someone else?

Could you imagine Google searching your name only for a front-page result to be a blog your parents authored where they detailed all of your personal challenges for the world to read, complete with pictures and names? I know autistic people who have had this exact experience. No, their parents didn’t think to ever tell them.

Sharing about somebody’s personal details, including challenges and diagnoses, in a public setting requires that you obtain that person’s explicit consent to do so. This applies to people of all ages and abilities, by the way. I’ve heard people argue that it’s okay to share about someone without their permission because “they’re too young to give consent” or “they’re non-speaking, so they can’t communicate.” Ignoring for a moment that non-speaking does not mean non-communicating, I just want to point out that that’s not how consent works! You don’t assume that you have permission to do something until you don’t – instead you seek consent before you ask. And yes, this means that I am advocating for not sharing personal details about young children on the internet, and I absolutely stand by that. Stop posting compromising or potentially embarrassing personal information about anybody, especially autistic people, online.

Now, I understand there can be circumstances where it’s helpful to share information that could be personal or compromising to seek support, including online. The key in these situations is to anonymize the information – post anonymously, don’t give names or other identifying pieces of information, and don’t include any pictures that includes anybody’s face. Once it’s on the internet it truly is immortalized, so don’t post anything that you would be embarrassed to have shouted from the rooftops about if it were about you.

As a small aside, this also somewhat applies to sharing of diagnoses in public. I’m particularly thinking of those shirts that proudly proclaim “my child is autistic.” I know that I certainly wouldn’t want everyone who walks by me on the street to know that I’m autistic, and I would be mortified if it were broadcast to everyone in the general vicinity via a shirt. Diagnoses are private pieces of information that not every stranger needs to know about, not the least of which because it opens the autistic person in question up to potential abuse.

I choose to share my own personal journey and experience as an autistic person. This doesn’t mean that everyone else has the right to share it for me without my permission. Autistic people deserve privacy and to give consent to their personal information being shared publicly. Please consider this before you post.

Blue writing on a white backgrounds reads “CONSENT” and is being underlined by a hand holding a blue pen.

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