After posting the video of Ian’s mall and car meltdown, Autism Family, a vlogging couple from Utah with three autistic sons and 43,000 subscribers, disabled comments due to “excessive trolling including obscene sexual comments.” The couple did post a follow-up video in which they tried to explain why they showed their son in a vulnerable state. In a voiceover, mom Brittny Owen repeats some of the most common queries they said they received—some justified, some heinous. “Why would you show a video of your son freaking out? Why would you take someone with autism to a public place? Why didn’t you abort your son? Isn’t this video a violation of privacy?”
As to whether the video is a violation, Owen answers an unequivocal no: They were in a public place, so Ian was already exposed to potential ridicule. Ian doesn’t have control over his behavior, and it isn’t anything to be ashamed of, she says. Further, avoiding the vitriol of trolls might inadvertently end up feeding their prejudices. Ultimately, if their son ever asked them to remove the clip, they would.
“Personal stories can help illustrate marginalized people’s lived experiences, but there are serious ethical concerns when the personal stories are offered by someone other than the person who is the subject of the story.”
According to Lydia X.Z. Brown, an autistic advocate and former chairperson of the Massachusetts Developmental Disabilities Council, the tension around child autism vlogs is not so much the nature of the content; it’s that the autistic child’s story is being presented by another person, often by someone who is not autistic.
“Personal stories can help illustrate marginalized people’s lived experiences for those outside the community,” Brown says, “but there are serious ethical concerns when the personal stories are offered by someone other than the person who is the subject of the story.”
While asserting that it may be ableist to assume an autistic child is “incapable of giving or refusing consent,” Brown also notes that parents have “legal, social, and economic power and control” over their children — in some of these cases, children who are entirely nonverbal or severely intellectually disabled — thereby making the issue of informed consent that much murkier.
The permanence of the online content also bothers Brown. “[This practice] is extremely inappropriate and harmful not only to autistic people in general, but also to their children in particular, who will never be able to undo the harms caused by having these videos online potentially for the rest of their lives,” Brown says.
Many of the vloggers behind the Baby Autism videos are earning money from YouTube. Some have monetized channels, which means they earn revenue through advertisers, while others include links to Patreon pages or PayPal accounts. Owen, for example, told me via email that while most her videos are monetized, their channel “barely pays for itself,” because their following is relatively small. The family does accept PayPal donations to buy toys and sensory tools for their children.
In 2017, a ripple spread through the small world of special-needs family vloggers when the YouTube algorithm began abruptly demonetizing autism-related videos. Creators posted angry rebuttals, focusing on the fact that autism awareness would suffer because their videos wouldn’t be seen. (When a video is flagged or demonetized, it isn’t prioritized on search engines and cannot earn ad revenue.)
Stephanie, a prolific career YouTuber in Jacksonville, Florida, who vlogs under the handle Our LANDing Crew (75,000 followers) and has five children, including autistic 10-year-old Noah, doesn’t think the algorithm was targeting autism videos. “Random things were getting demonetized,” she wrote me. “My only guess is [it was] to prevent parents from exploiting their kids by showing meltdowns.” (Stephanie declined to elaborate on whether she thought other vloggers might be exposing their children unethically.)
YouTube did not respond to multiple requests for comment; the site does offer a “Parent Resources” fact sheet, a threadbare list of best practices geared toward parents whose children are using YouTube independently, not those who are featured in their parents’ videos.
Viewers occasionally suggest to vlogging parents in the comments that they want their children to be autistic for the exposure. Stephanie responded to what she calls the “most common hateful comment” she receives in a video by snapping, “People have made assumptions that I want it for, like, the YouTube views… I already have an autistic child! I don’t need to, like, rack them up like they’re little collectibles.”