When Eileen Lamb’s toddler son, Charlie, was diagnosed with autism spectrum disorder, she didn’t have a big support network nearby. So, like many other isolated and overwhelmed moms, she turned to social media.
“I was just looking for people that I could relate with,” Lamb, 31, of Austin, Texas, told TODAY Parents. She said her decision to share her family’s autism journey on Facebook and Instagram turned out to be “a double-edged sword.”
“Every time I posted something about Charlie, hundreds of people with autism would attack me and say, ‘You clearly hate your child, we need to call child protective services on you, you’re a piece of s---, you’re not autistic so you cannot speak about your son’ — it was very, very, very intense. It was horrible.”
Lamb thought the vitriol might subside when she opened up on social media about her own autism diagnosis, which she received a year or so after Charlie’s.
“It actually got worse,” Lamb recalled. “People told me that I had self-internalized ableism, that I was self-hating. ... I felt like I was being bullied into silence.”
In the age of social media, parents everywhere grapple with issues of sharing — and potentially oversharing — information about their kids.
“There are too many ‘martyr parent’ groups out there — groups where parents use their children for sympathy."
For parents whose children have been diagnosed with autism, ADHD and other neurological conditions, decisions about what to share online can be even more fraught. A post that one parent views as “raising awareness” or “seeking acceptance” could be fodder for future embarrassment and regret when the child being posted about becomes an adult.
Autistic teenagers and adults are on a crusade to help neurodiverse people get a fair shot in workplaces, academic institutions and other settings. In recent years, autistic self-advocates have popularized the hashtag #ActuallyAutistic and are pushing to rename “Autism Awareness Month” in April to “Autism Acceptance Month.” Many call out characterizations of autism on social media that they find offensive or misleading.
“There’s this tragedy narrative out there implying that autism is a fate worse than death — when it simply is not,” said Amanda Seigler, 39, an autistic mom of autistic children who serves as an administrator of a Facebook group called Autism Inclusivity, which has more than 70,000 members.
“There are too many ‘martyr parent’ groups out there — groups where parents use their children for sympathy,” Seigler continued. “They say, ‘Oh, poor me, my child had a meltdown today.’”
Some parents of autistic children share posts that are excessively personal, including video footage of their kids having meltdowns, holding up signs describing the medications they’re taking and wearing diapers or sitting on toilets well after the age of 10.
Autistic adults tend to hate posts like these. They say that in addition to violating children’s privacy, the posts do not reflect the experiences of most autistic people.
“These parents are adults, so they should know better,” Seigler said. “Once a post is online, it’s there forever.”
Camille Proctor, 55, a Michigan mom of a 15-year-old autistic son, agreed. Proctor is the executive director and founder of the Color of Autism Foundation, a nonprofit organization that educates and supports Black families with autistic children.
“Your child is going to grow up someday and see this,” Proctor said of sensitive online posts. “Is it really healthy that you’re letting them know they were a burden to you?”
The existence of such posts spotlights a painful reality: Autism is a spectrum, and parents of kids on the profoundly disabled end of that spectrum are often overwhelmed and terrified for their children’s future. Some parents choose to vent their feelings in public forums, and they can be vilified for it.
“I feel very strongly that the complaints by mildly affected autistic adults that parents are violating their kids’ privacy by writing about them represent the most insidious form of censorship,” said Amy Lutz, a Pennsylvania author, mom of a 22-year-old severely autistic son and vice president of the National Council on Severe Autism. “Severely autistic individuals don’t have the capacity to consent, therefore parents are forbidden to speak about them, therefore the only voice the public is supposed to hear is that of autistic adults who claim to speak for the entire spectrum.”
‘Nothing about us without us’
John Elder Robison is an autism expert who feels empathy for all the autism factions who spar on the internet. A best-selling author of memoirs about his own autism diagnosis at age 40 and a leader of neurodiversity initiatives for universities and U.S. government committees, Robison is also the son of an autistic father and the father of a 31-year-old autistic son.
In a recent Psychology Today essay with the headline “Your Autistic Child Is Perfect and May Need Help,” Robison addressed the autism wars being waged online.
“In the autism community, we often say, ‘Nothing about us without us,’ meaning any conversation about autistic people should be led by autistic people,” Robison wrote. “It makes sense, but it’s not the whole story in this case. There is another equally valid perspective. ‘Nothing about us without us’ applies equally well to parenting. ... If the topic is parenting an autistic child, what better voices than autistic parents?”
Robison, 64, of Western Massachusetts, told TODAY that he understands why many parents feel blindsided and afraid when their children are diagnosed with autism — an experience shared by 1 in 54 children in the United States.
“Many parents see it as a terrible, terrifying disability,” Robison said. “They wonder: ‘Will my child be able to live on their own when I’m gone? Will they find a partner?’ It’s scary! These parents feel a lot of stress and a lot of fear. ...
“But when they write things online like ‘I wish I could cure my kid,’ autistic people who are very verbal online can take great offense. They’ll say, ‘Oh, you say you don’t want people like me to be born? You don’t want your son to be born?’ And no, those parents are not saying that at all. They’re saying they think their son has a horrible disability and they wish he didn’t.”
Robison said the passage of time often helps many parents realize they didn’t need to be so fearful.
“Most autistic people become less disabled as they get older — and sometimes we get strikingly less disabled,” said Robison, who has found success over the years as an engineer, teacher, writer, business owner, photographer and public speaker. “At age 6, I had no friends, I threw things, I bit people — you wouldn’t have been so sure about my future if you had seen me back then. I acquired more skills as I got older. If you were just looking at the 6-year-old me, you’d have no idea of what was to come.”
Robison said he’s grateful his mother didn’t write a blog about “little John Elder” during those early years: “I’d have been pretty embarrassed if I read it when I was 21.”
‘We're desperate for change’
The behaviors of autistic people can vary so much — from slight social quirks to severe disabilities. For parents of profoundly disabled children with autism, isolation is common because outings and social interactions can be so challenging.
“I believe children are only as healthy as their caregivers — and to help other caregivers, it does involve peeling back the curtain a little bit and allowing people into our lives,” said Jessica Ronne, 44, a Michigan mom who blogs at Jess + The Mess and whose teenage son Lucas has multiple diagnoses that will require total care for the rest of his life; autism is just one of them.
“Most of us are not sharing our experiences to diminish our child’s privacy or to embarrass our children — we’re doing it because we’re desperate for change,” Ronne said, noting that many overloaded parents need help. “People can’t fix what they don’t know about.”
Kate Swenson, 38, a Minnesota mom who has chronicled her life with her severely disabled autistic son, Cooper, attained a blinding level of attention online after a video of her crying in her car went viral on TODAY’s social media platforms in 2018.
“I got death threats. I had a woman tell me she was going to kidnap Cooper. People told me I don’t love him because I said autism is hard,” Swenson recalled.
Today, Swenson is careful about what she posts on her main public Facebook page, which has nearly 700,000 followers. She’s more forthright about caregiving realities in a closed, paid supporter group she’s created on Facebook.
“It feels like severe autism is the forgotten end of the spectrum. It’s so hidden away for safety reasons,” Swenson said. “Kids like Cooper were institutionalized not that long ago — just 30 to 40 years ago. That was the choice parents felt they had to make. If I don’t share his story, how will kids like Cooper ever get the support they need?”
“Other parents are starting to stay quiet online because they’re too afraid, but I can’t do that,” Lamb said. “I’ve found a strength I didn’t know I had.”
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Tips for parents before they share
An array of autism experts, autistic adults, disability advocates and parents offered the following tips for moms and dads before they share information about their own children online:
1. Find your people
“The balanced advice I would give parents is this: find parents who have children whose autism manifests the way your child’s does,” Robison said. “It’s not going to do you a lot of good to go to a Facebook group with people who aren’t dealing with those same things. Then try to meet those people for real, in real life — not just on the internet.”
2. Think small and stay local
Kerry Magro, 33, of Hoboken, New Jersey, was diagnosed with autism as a young child and didn’t start speaking in complete sentences until he was 7. Today, he’s a public speaker, disability advocate and author of three books, and he has a doctorate in education. His dissertation focused on parents’ efforts to find resources in online communities.
“For a lot of parents, it’s best to stay away from large groups in the disability community because of all the conflicting opinions,” Magro said. “Small, localized Facebook groups are best for therapy referrals and other advice in your local area. ... It’s a good way to move away from all that toxicity online.”
3. Engage with autistic self-advocates respectfully
“Don’t underestimate self-advocates’ level of not only empathy, but also information that they hold to support you on your journey,” said Proctor of the Color of Autism Foundation. “Yes, sometimes they come off as abrasive — but what you’re seeing is someone who is begging you to do better. ... In my experience, I’ve found that if you stick your hand out to them and actually try to talk to them, they’ll stick their hand right back out.”
4. Mind your terminology
Certain terminology can be seen as loaded, dated or insensitive in some autism circles. To learn more about this, click here.
5. Speak for yourself, not your child
Carrie Cariello, 46, of New Hampshire, has an autistic 17-year-old son named Jack and a loyal following online. Cariello has written two books about life with Jack and has shared posts about him every Monday for the past nine years.
“I do think you can create boundaries while at the same time tell your story in a powerful way,” Cariello told TODAY. “I try to talk about my part of the story. I don’t try to own his story. I can speak to my journey as a mother without appropriating his pieces of the story or trying to change everything about him."
6. Ponder the short- and long-term consequences
Ask yourself: Could the information I’m sharing cause my child to be bullied in school? To be embarrassed as a teen? To be rejected for educational or job opportunities as an adult?
“In adolescence, I had difficulties with bullying that were very traumatic for me,” Magro said. “I know personally, definitely early on, I would have leaned on my parents not to reveal personal information about me online.
“But, now that I’m an adult, it’s my decision to share what I want to share.”
This story was first published on TODAY on Aug. 13, 2021. It has been updated.