These days, oversharing about kids is almost reflexive, but that impulse to post one too many bathtub baby photos on Facebook or Instagram can be an unintentional privacy violation. They are often posted without consent and could haunt children for life. While all kids are at risk, this oversharing especially impacts the privacy and dignity of children with disabilities, including those on the autism spectrum, because it can reveal struggles or challenges that should remain private. It seems the Internet has created a public international support group where parents of autistic and disabled children are not just parents, but content creators and community leaders, photographers and bloggers.
My mother, with her gentle wisdom and strong advocacy on my behalf, was not the most technologically savvy person in the early 2000s — and thankfully, the Internet wasn’t the extensive network it is today, so my life wasn’t shared with the world.
It’s complicated enough existing as an autistic child or adult while knowing how people negatively perceive autism. Being exposed to these online messages parents share only makes things harder. Imagine learning that your parents see you the same way cruel schoolyard bullies do — and that they shared those feelings with the world.
“Some blogs are filled with horrible statements about the child, framing them as the monster and their parents are somehow the victim of their disabled child,” Christa Holmans, an autistic blogger diagnosed in adulthood, says. “What if the child grows up thinking ‘I’m a broken, defective person?' ”
Holmans’s fears are not unfounded: children with learning disabilities tend to have overall lower self-esteem than their nondisabled peers, and autistic children struggle with self-esteem and are often bullying targets. Many autistic adults struggle with anxiety and depression, and people diagnosed with autism later in life often express feeling relieved to discover they weren’t broken or defective. Mental health co-morbidities are prevalent in the autistic community, and information shared and consumed online can negatively impact our perspectives of ourselves.
Autism blogs have been mocked as a moneymaking scheme, but that is grounded in truth. There is no shortage of parents of autistic children oversharing their child’s private life to profit, whether it is misadventures in toileting, a successful intervention strategy or a meltdown that feels terrifying for all parties involved — especially the autistic person.
Jess Wilson is the mother of two daughters, one autistic teenager and one neurotypical college student, and runs the Facebook page Diary of a Mom along with its companion blog. She is a rare example of the parent who gets it right in terms of online sharing.
Wilson uses pseudonyms for her daughters to protect their privacy, and once posted a strongly worded statement explaining why she wouldn’t share her daughter’s experiences with personal things, such as puberty. Her litmus test for what to share online regarding adolescence and puberty was “if it were me, and I were twelve, would I want my mom telling this story to everyone I know?” The answer is, most often, no.
“My desire to talk about my challenges, my fears, my own insecurities about the process, cannot ever trump [my daughter’s] right to privacy. Helping to guide others cannot come at the cost of her dignity,” Wilson wrote. Other parents would do well to learn from Wilson’s example.
And the weighing of privacy, dignity and helping others needs to continue into adulthood, for parents and self-advocates alike. Consent issues came to a head for me after my admission to the Florida Bar, when a parade of media outlets spoke to me and my parents over the course of several months.
Last summer I was the subject of a short documentary by a then-student filmmaker. My family spoke with her extensively before agreeing to allow her to film us and learn about employment, inclusion and autism advocacy through my point of view. We had discussions about boundaries and what I felt safe sharing with the world. We are a team, after all.
Yes, it’s okay if the filmmaker ends up filming a meltdown or my anxiety in real time if it happens after a particularly distressing situation — but don’t take it out of context, and make sure to allow me to explain how I felt when I am calmer. No, I don’t feel comfortable talking about my love life on camera. I also had those conversations privately with my family. No, let’s not talk about things like potty training — I’m a young professional who doesn’t want certain private aspects of my toddlerhood in the public domain. Yes, it’s fine if you share footage from the elementary school play. I wasn’t there each time my parents were interviewed, but we had agreed on what was off-limits.
When I asked my parents why they didn’t talk about me or share some of my most private moments or struggles even when they had the chance, their answer was simple. “Your story is not my story to tell,” my dad told me. My mom said that she will share stories about me or my childhood only if I feel comfortable. After our conversation, I smiled.
My dad has a Facebook page, but he doesn’t brand himself there as an autism dad. He is Haley’s dad, a proud parent who loves his kid for who she is and shares what she feels comfortable with him sharing, including accomplishments or photos I’ve posted. We live our lives on our own terms — and there is no daily chronicle of highs and lows to outlive us online. The Internet might preserve stories in a sort of virtual permanent marker, but the real permanency should be in a trusting and loving bond between parents and children who treasure and respect that relationship.
Haley Moss is an autistic attorney, author and artist, and an advocate for disability inclusion and neurodiversity. Find her on Twitter @haleymossart.