Kathleen O’Brien: In 2009, a study found that the mothers of children with autism experienced a level of chronic stress similar to that of combat soldiers. Two and a half years after I read about that study, I was told that my son had autism. He was about to turn 2.
A few months after his diagnosis, he started doing something I didn’t understand. He was looking out of the corner of his eyes and flapping his hands in front of them. It was self-stimulatory behavior, or stimming, common in kids on the autism spectrum, and he did it intensely.
Putting him in his crib at nap time during this stage was hard. I would stay by his side and sing to him, often for 30 minutes or more, because it was the only way to distract him from flapping and get him to fall asleep.
One day, my energy was flagging. Instead of sticking around to sing at nap time I quietly left the room. Maybe he would flap himself to sleep? It seemed worth trying. I went back to check on him 10 minutes later and there he was, awake and waving his hand. And I thought, there is no one on earth who knows how I feel, exhausted and scared, watching my child flap and flap in the dark.
But I was wrong. There are people like me around, stumbling through caring for a child who isn’t “neurotypical,” and it’s comforting to know they exist. They helped me learn to accept him, stimming included. Other parents’ frustrations, questions, honest and sometimes funny tales — all provide a balm on hard days.
It hasn’t been that fashionable to be into Facebook lately, and with good reason. Mark Zuckerberg, the company’s founder and chief executive, was called before Congress last week to discuss troubling reports about its data gathering and advertising practices.
Yet I am still on it. It has become a convenient tool to stave off a bit of the isolation that can come with the special-needs parent territory.
For me, user-created Facebook groups for special-needs parents function like a very convenient support group you can check in with as your time-crunched life permits. People share recommendations and advice. They vent about schools, health insurance and daily life. I am not even that active in these groups, but it’s reassuring to hear from other parents, even just online.
I asked some parents in a couple of my Facebook groups for their thoughts about what the social network means to them, particularly with the latest news and the calls to delete it. Here’s some of what I heard:
“This group makes me feel less alone.”
“I felt rescued by a connection made here.”
“I did delete Facebook and found myself sort of unraveling. I feel so alone without it. I’m actually tearing up as I type this.”
Autism is often misunderstood (and it doesn’t help that a weird puzzle piece has been used to symbolize it). But its prevalence means that most people have heard of it. Facebook might be even more valuable for individuals with very rare conditions and their families.
Emily Wilkinson told me about her 5-year-old daughter, who was the first person given a diagnosis of Xia-Gibbs syndrome, caused by a genetic mutation, when she was 20 months old. Since then, about 70 people, mostly children, have been found to have the condition worldwide, and it is thought to lead to both physical and intellectual disabilities. Ms. Wilkinson says the Facebook group that parents and caregivers formed has been life-changing. Members are far-flung, and some of the parents have met in person. There were times when Ms. Wilkinson wanted to delete Facebook, or take a break, but she couldn’t go through with it partly because of the group.
Rivka Einy-Biton has a 3-month-old son who was recently found to have megalencephaly-capillary malformation syndrome, a genetic disorder characterized by tissue overgrowth that affects brain development. There are under 300 reported cases of the condition. Joining a private Facebook group for those affected by the syndrome has helped her gain clarity and strength. Her fellow members share advice, resources and pictures of their own children. “In certain ways,” she noted, “this group has been more helpful than many of the specialists we have seen.”
Another parent, Juliet Ross, has a 7-year-old son with eosinophilic esophagitis, a chronic digestive disorder that requires him to use a feeding tube. She said the members of the Facebook group devoted to the condition refer to each other as “our EoE family.” Halloween is difficult for the children because restricted diets leave most, if not all, candy off limits, so the families join forces and mail each other cards instead.
It’s useful, too, that they know the details about providing this specific type of medical care at home. “When I have a feeding tube question in the middle of the night, it’s really helpful that there might be another mom awake, maybe in Australia, who knows the answer,” she noted. The kids themselves can get lonely as the only person in their circle with a feeding tube. It has become common for parents to reach out on Facebook, asking for pictures, so that their children can see that they are not alone.
Of course, it’s not just special-needs parents who find support on Facebook. There are lots of other important groups connecting there, including adults with disabilities. What should we all do?
It’s not that I care about my personal privacy. I’m boring. It is about what Facebook is allowing to happen with the data it has on millions of boring people like me.
There is evidence that it allowed advertisers to discriminate by targeting housing and employment ads to white users only. Then there was the Cambridge Analytica scandal, which raised concerns that data and “dark ads” were used to manipulate voters. In Myanmar, Facebook has been accused of facilitating violence against Rohingya Muslims by permitting anti-Muslim hate speech to spread on its platform. These stories should start pricking the conscience of us all. I hope Facebook and lawmakers can change this trajectory — move fast and fix things! — and win back people’s trust.
But if things don’t get fixed, there is something every boring person still on Facebook should start thinking about doing, in particular those who have formed vital support groups. Recognize the powerful thing you have created. Start figuring out the best replacement where your group can congregate — a lifeboat, if you will. Once that lifeboat is in place, take a stand, band together and jump ship.
It’s not that we need Facebook. We just need one another.
Kathleen O’Brien (@katieobNYC) is a staff editor with The Times’s Opinion section.