Disappointed by many non-autistic “Autism Parent Influencers”. Wish there were more laws and safeguards for autistic people.

[u/NiceStar6996]

It’s disappointing that people are building influencer pages off autistic kids and adults, especially when there is not demonstration of informed consent.

The “autism parent/mama” accounts are a big part of this. Parents post videos of their kids without informed consent, often including the hardest moments like meltdowns and personal struggles. There’s a difference between parents having spaces to talk to each other and parents monetizing footage of their child’s worst (and best) days. Most of these kids are too young to understand what’s being shared or to agree to it. By the time they grow up, there’s a permanent record of their private moments online that they never chose to put there. To be fair, my feelings on this extend to really any content with minors, but especially these really difficult and private videos of ASD struggles.

The adult side is just as concerning. You see pages run by other people, not the autistic person themselves, where someone films interactions with autistic adults and frames it around their own “kindness” to disabled folks. The person may have agreed to one video without any understanding of the reach, the algorithm, or the money involved. This extends beyond disabilities. We see this with elderly folks too that are randomly filmed by relatives and go viral, without really knowing what that all entails. Plenty of autistic people from all “levels” use social media, so the fact that someone else is running the account and profiting off their autism is a red flag to me. Consent to being filmed once or for personal things is not consent to becoming someone’s ongoing content.

To be fair, some pages run by non-autistic caretakers are doing it better than others. Usually these accounts are not focused on the autism and demonstrate consent or knowledge of an online fan base. One I can think of has a teen who is level 1 and just likes sharing random facts. Another is run by parents of someone level 3 with an art page, but even that page is a pushy sometimes imo since they’re selling the art. Overall, these “better” accounts have content is the autistic person’s actual interests, not their diagnosis put on display, and demonstrate knowledge of filming and the “reach.”

Does anyone know what laws actually apply here? I’m wondering about two things specifically: rules about sharing/profiting off of identifiable faces of minors and disabled adults without informed consent, and whether there’s anything stopping people from monetizing this kind of content. And if the laws don’t exist yet, is there anywhere we can push for better safeguards?

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[u/Bitter-Fishing-Butt]

at a previous workplace, we had a TV company filming there and doing a piece about specialist provisions

my team lead (speech therapy) was VERY unpopular with the TV crew because she refused point blank to let them film some of the kids - the kids on our caseload had high support needs and we weren't confident that they would be able to give informed consent to be filmed, so we just flat out didn't let them near our classes

the headteacher fully supported us on this, and backed up all our reasonings - she told them "This is a school, not a zoo. You only film those who want you to and can tell you to."

(full disclosure, the therapy team weren't exactly mad keen on the whole thing but we had no say over it)

[u/raphael-iglesias]

I was just thinking about this after watching one of those videos that popped up in my feed.

This wasn't a particularly bad one but it still made me wonder how ethical it is.

The video in question featured a 12 year old girl, who was non-verbal and just started speaking. In that scenario, I wonder how a 12 year old could possibly give informed consent to be featured in a Youtube video like that?

Heck, I'm not sure if any 12 year old could give consent, even if they're not autistic, non-verbal.

It did feel like the mom was using her child as a prop. All under the guise of "spreading awareness".

[u/AmbitiousFix1681]

the permanent record thing is what gets me. these kids will grow up and find footage of their worst moments monetized, with strangers in the comments analyzing them. they never had a say in any of it.

there’s also something specifically uncomfortable about the framing of “kindness.” the whole genre where a non-autistic person films themselves being patient with an autistic adult and the comment section applauds them for it. the autistic person is props in someone else’s character arc.

i don’t know the legal landscape well enough to answer your question, but i think the cultural pressure is actually moving faster than legislation here. more autistic adults are pushing back publicly and naming what’s wrong with this content, which at least shifts what’s considered acceptable even before laws catch up.