A video opens with a young boy, maybe five years old, waving to the camera and chatting animatedly. His words are obscured by a soundtrack and his mother Andrea’s voice:

“This was the first sign of autism that I noticed in my son at six and a half months,” says Andrea, who runs the vlog FoolyLiving, which boasts nearly 138,000 subscribers. “He has since been diagnosed with high-functioning autism and OCD.”

The video flashes back to the baby pulling himself to standing, rolling over on the carpet, and cooing happily at his mother, who speaks sweetly to him off camera. Without Andrea instructing followers to note the child’s repetitive hand movements, viewers might assume they’re watching a home movie of a healthy child. In fact, many viewers did just that and commented in kind. “This baby looks and acts very normal. I don’t get it,” wrote one person. Another asked, “Maybe he does that because he’s a baby and can’t properly control his body? You know, because he’s a baby lol.” A few countered that their kids had done similar things as babies but did not have autism.

But for all those who questioned Andrea’s diagnostic gusto, there were others for whom the footage stoked fear: “Ever since my son started the hand thing, I’ve been concerned. He’s been doing it for about five months now, and he’s seven months old,” a mother wrote. “Should I have him evaluated?” Another parent wrote of her despair over her son, who also flapped his hands as a baby and was never diagnosed with autism but struggled to fit in at school as a teenager. “I feel so helpless,” she wrote, to no response.

Autism spectrum disorder (ASD) was initially considered a rare impairment afflicting only children. Now, according to the U.S. Centers for Disease Control and Prevention (CDC), as of 2014, one in 59 babies will eventually be diagnosed with ASD.

Autism is defined along a spectrum of disability and can present itself as idiosyncrasies and hyperspecific skills, a lack of language, dependency on others for basic care, or anything in between. Many clinicians and historians believe that the skyrocketing rates of ASD are due to the fact that its diagnostic definition has been in near-constant flux since it was first recognized in the 1930s.

In the 1990s and early aughts, parents of children with autism could reach out to their peers through blogs or, if they were celebrities, via television appearances and book deals (recall actress Jenny McCarthy’s 2007 Oprah appearance, during which she insisted that her “mommy instinct” qualified her to diagnose her son’s autism as vaccine-induced). These days, parents frustrated with lack of societal support and visibility are taking to YouTube to document the reality of living with a loved one who has autism, educating — or miseducating — their viewers in the process.

This is the world of Baby Autism YouTube, an online video genre in which a child with autism’s baby pictures, evaluation results, and emotional meltdowns are posted online for thousands of viewers to learn from, dissect, joke about, sympathize with, puzzle over, or all of the above. The vloggers behind the videos — overwhelmingly the child’s parents — run the gamut from amateur YouTubers who post raw footage infrequently to career YouTubers whose polished editing, savvy hashtag usage, and occasional brand sponsorship and merchandise tie-ins speak to a more ambitious online presence.

In a clip titled “Early Signs of Autism Spectrum Disorder (Infants)” posted by Our AUsome Life — a vlog run by a mother in California with three special-needs children — a six-month-old named Kenzlee is shown in her high chair at various mealtimes. A text card tells us Kenzlee was diagnosed with ASD at age two. The “signs” of autism the video displays include playing with her food and being easily distracted by her mom. The video ends with an invitation to follow the family on Facebook, Instagram, and Twitter.

Another video, entitled “Autism Meltdown at the Mall,” by the vlogger Autism Family, opens with Ian, a child wearing a bright-orange body harness, alternately screaming and throwing himself on the floor as his dad leads him through a crowded mall. “Are you getting overstimulated?” his father asks in the background. A postscript informs the viewer that this particular tantrum lasted for six hours. “Although uncomfortable to watch,” it continues, “we hope this video was educational and helpful to families and friends of autistic individuals.”

“Viewers can take it upon themselves to draw conclusions of what that family’s ‘real life’ is like, and they may overestimate or underestimate when comparing their own situation.”

I first discovered Baby Autism YouTube while idly searching the site for content related to my son, then nine months old. I was struck by how ubiquitous the “signs” of autism in infants these vloggers pointed out were: everything from bouncing in a bouncy chair to splashing in the tub to fidgeting on a play mat. Any number of other activities, most completely innocuous in isolation, were put forth as evidence of incipient autism, despite the fact that these behaviors are also age-appropriate for neurotypical infants. I wondered how a parent less familiar with ASD (I worked with autistic children in various capacities during my late teens and early twenties) would interpret this content. I reached out to all the vloggers included in this story; most did not respond.

As I ventured further down the video rabbit hole, my questions multiplied: Is it possible to diagnose an infant with autism? How much do these videos help to inform the public, and how much do they provoke unnecessary paranoia? Is it ethical to post footage of children at their most vulnerable — and is it more ethically problematic to do so if a child has special needs? What quality of information is being presented by these vloggers, and how well is it being translated for an audience largely unaware of the broader picture?

When I reached out to doctors and care providers about when it’s appropriate to diagnose autism, all told me that ASD screening starts at 18 months and that while earlier detection is possible, it is not the norm. “Babies and young children develop at such different speeds,” says Philip Boucher, MD, a pediatrician based in Lincoln, Nebraska. “What may concern us about a 12-month-old doesn’t concern us about a nine-month-old.” While he says some signs of autism may be visible before the initial screening, Boucher adds, “There’s a host of different factors that play a role in why a child seems to be exhibiting some autistic features, which then [could] normalize over the coming months or years.”

T.J. Gold, MD, of Tribeca Pediatrics in Brooklyn, New York, said that while she has picked up on autism signals in babies before screenings, in other cases there may be no signs until the child is past the conventional age for diagnosis. Online resources like YouTube videos, she says, often present a deceptively uniform version of autism and can encourage unproductive comparisons. “I always question parents about being careful when they’re looking for similarities [between children]. You have to think about the nature of developmental delays and disparities,” Gold says. “They don’t apply necessarily to every kid.”

Ryan Kopf, a Virginia-based therapist specializing in applied behavior analysis, agrees: Too much time spent immersed in these resources could be misleading due to the “small scope” of what one sees. “Viewers can take it upon themselves to draw conclusions of what that family’s ‘real life’ is like, and they may overestimate or underestimate when comparing their own situation,” he says.

The four professionals I spoke to all agreed that while early intervention therapies help autistic children and even benefit kids who don’t fall on the spectrum — just like extra tutoring can aid a student who is already proficient in a certain subject — there are potential issues. Boucher cites increased stigma, while Gold questions the wisdom of isolating a child from their peers, which has obvious downsides for kids struggling with interpersonal interactions. “[Kids with autism] are then pulled away from group settings and having lots of private therapies, and sometimes I’ve seen that backfire,” she says.

If diagnosis under 18 months is rare, can YouTube vloggers correctly classify a six-month-old? It can be hard, while watching these clips, to remember that in most cases, the parent is “looking in the rearview mirror,” as Gold puts it, splicing together home movies and photos of their children from years prior and superimposing their current knowledge onto it.

“There are, retrospectively, a lot of parents who will say that their child was different from the first month or the first day or the first hour even,” Boucher echoes. “A lot of times, there’s some bias with those observations.”

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.”

The dissemination of unverified or occasionally harmful ideas in medicine has become demonstrably easier in recent years, thanks to the ever-burgeoning power of celebrity, the growth of the internet, and, more specifically, the ease with which people with no medical training can take to social media and market themselves as specialists.

And in today’s health system, you’re hard-pressed to find a patient community that’s not harboring at least a little resentment for the way they were treated by doctors in the past. “I felt like [the doctor] felt like we were… overly concerned parents,” said Rachel, who, along with her husband, vlogs under the name Vincentville (3.6K followers) in an April 2018 vlog. “The doctor said because [my son] was showing affection, we didn’t have anything to worry about,” her husband continued. “Looking back on it, it kind of does annoy me, because I remember [him]… almost pushing our concerns to the side… [W]e’re with our children every single day, so if we notice something that might be developmentally off, we’re the experts!”

It’s inevitable that parents turn to YouTube not only to share their experiences, but also to occasionally crowdsource a diagnosis from their followers. In one clip, a mother stimulates her 13-month-old son Carter’s facial tics by opening a drawer and asks in the video’s description: “My question is do you think this is a form of stimming (autism) or does it look like a seizure?” In a video titled “13 months old- Signs of Autism?,” mom Leila, who vlogs at least once a week on her channel Leila’s Life, set pictures and video of her daughter, oblivious to the camera and her mom’s constant entreaties for eye contact, to sad piano music.

Viewers responded to both videos by suggesting everything from motor statistics issues to hearing problems; some beg the vloggers to watch the videos of their babies and offer an analysis. (Carter was eventually diagnosed with autism and ADHD; Leila didn’t respond to requests for an interview.)

But even the most well-meaning videos can sometimes undermine medical authority. In a video titled “Newborn Baby Gets Autism Test Results!,” Stephanie of Our LANDing Crew explains why she got her seven-week-old son, Liam, genetically tested. She tries valiantly to clarify that while the test can tell her if Liam has the same chromosomal microdeletions that his autistic brother has, there is no genetic test that can tell her definitively that Liam will be on the spectrum. Still, viewers leave comments like: “I literally had NO idea you could test for autism like that.”

Charles Nelson, PhD, a professor of pediatrics and neuroscience at Harvard Medical School, says genetic testing for infants and young children offers little insight into a child’s pathology or potential outcome. “Dozens of genes have been associated with autism, but with the exception of rare genetic disorders” — for example, Fragile X syndrome — “these are simply correlations, not causal. There are now a few companies out there that make this claim, but the data on which these claims are made are specious.”

The probability of any viewer being able to decipher the information in her genetic testing videos rests on their ability to fully distinguish between causation and correlation, link and origin, theory and fact, and to listen to the very official-sounding scientific terminology and be able to draw out the underlying conclusion, which writer and special-needs parent Emily Willingham neatly summed up in a blog post titled “This just in… being alive linked to autism.”

The professionals I spoke to were unanimous in saying that online communities like the ones that form around special-needs family vloggers are potentially invaluable. Before widespread awareness, parents of children with autism often suffered alone, afraid to go out or bond with other parents for fear of judgment. But these professionals also noted substantial downsides: the potential for information to be communicated ineptly, for parents of neurotypical children to panic unnecessarily, and for children’s private moments to be milked for attention and cash.

Personally, I found that the more videos I watched — and, of course, the more I watched, the more YouTube suggested similar content to me — the louder the volume of a previously quiet white noise of maternal terror became. Every time my son did something even slightly reminiscent of the things those autistic children did, like wave his arms or ignore me when I called him, I had to suppress my dread. What if I had been wrong to label other people’s frantic quests for pathology overzealous? What if I had been misguided in assuming all those immunizations he got were harmless? What if I had failed to heed the call for vigilance, and now he would pay for the rest of his life?

Every moment in a parent’s life contains risk. Anxiety is inevitable, whether one’s child is autistic or neurotypical, and while sometimes necessary, it’s equally often corrosive. It was clearly time for me to say goodbye to special-needs vlogs. Now if only the algorithm would catch on.