Publicly Exposing Autism Meltdowns: Violation of Privacy or Raising Awareness?

Editor’s content notice: mention of corporal punishment

Performing a quick “autism meltdowns” search on Google has proven to be one of the most eye-opening, disturbing discoveries I’ve had to date since my late autism diagnosis.

Dozens of YouTube videos emerge showcasing photograph thumbnails of autistic children clearly in distress, with bold titles boasting & promising a dramatic experience for the viewer that one could very strongly argue is for clickbait, and even more haunting, exploitation:

  • Autism Meltdown at Mall
  • Autism Meltdown or Tantrum at Fair
  • Autism Meltdown & Panic Attack
  • Inside the meltdown of a severely autistic child
  • Autism Meltdown in WalMart
  • SENSORY OVERLOAD MELTDOWN and STIMMING
  • High Functioning Autism Meltdown & Message
  • Autism Meltdown in Public
  • BACK TO SCHOOL AUTISM MELTDOWN

These videos instantly took me back to my meltdowns in childhood. The overwhelming intense heat, tears painfully streaking down my cheeks, the wetness unbearable, yet I couldn’t wipe them as I was being spanked for the third time that week. The deafening screams of adults commanding I obey and conform to a household of rules and expectations that didn’t fit my budding, uniquely-wired operating system.

The utter humiliation that ensued when adults would discuss my “defiant, disobedient behavior” right in front of me cut me emotionally in ways I cannot verbalize. The taunting promise of, “We need to videotape you next time to show you how you’re acting! Maybe that will make you stop!” Couple this with the insurmountable waves of sensory overload, and it was a recipe for hell.

When I was five years old, I remember hearing a siren while we were on a walk in the neighborhood. I was so terrified by how I could FEEL this sound in my BONES that I took off and ran home, sobbing in my room to make the pain stop.

The threat of videotaping me and exposing that to family members and others was enough to make me want to harm myself. Anxiety-ridden and consumed with trying to constantly meet their standards, I masked my autistic traits as much as possible to avoid that type of humiliation. Thankfully, this was in the early 2000’s, and access to filming my meltdowns or outbursts in a quick manner was much more difficult than it is today.

For autistic children today, however, it is evident they are not afforded the luxury of privacy. In the past decade we have seen a massive explosion of Autism exposure and awareness.

But we as a society need to start asking ourselves if the methods by which we are promoting autism in children is even remotely ethical, or are they a complete, downright violation of privacy.

Autistic individuals are still human beings. We feel, sense, taste, smell, & experience life and energy in a way that many couldn’t possibly grasp. The intensity we feel during a meltdown in front of the people we should trust above all for our emotional safety, support, & well-being — only to have a camera record every ounce of the horrific experience, for millions of people worldwide to consume at their leisure.

This level of humiliation is a textbook definition of emotional abuse. Bringing a child into this world, no matter their abilities, means there is an expectation that the parent will provide safety, protection, acceptance, understanding, and empathy. Exposing autistic children in these vulnerable moments is not something we should be proudly airing as parents in the name of “awareness.” Awareness comes in many other forms.

This brings me to the question: does the autism community value the exposure of Autism meltdowns on a wide-spread scale over their child’s emotional well-being? How can we expect a minor, autistic child to consent to such public exposure? Sure, the authority is placed on the parents. But what social media rights and privacy laws are in place to protect the minor?

I challenge the autism community to take a hard look at the way we’ve been raising “awareness.” I challenge them to ask themselves if we REALLY could do without the meltdown exposure, for the sake of your child. If you still object to this, I would encourage deep self-reflection on why valuing your child’s privacy isn’t on your top list of priorities.

 

5 Comments

  1. I can’t understand why any parent, with access to the information about autistic meltdowns that is available so easily, would find any use in publicly humiliating an autistic child by sharing videos of their child at such a vulnerable time? Why they don’t understand that meltdowns aren’t bad behaviour but a pain response. I had the misfortune to see a meltdown video on Twitter and every autistic person who responded told the mother who was wailing on about how autism sucks that her child was clearly struggling with the bright sunlight because they were trying to cover their face and get out of the light but were strapped in to their seat. The asked why she didn’t just get a window sun shade and give him sunglasses. She refused to answer anyone but other parents commiserating with her. Poor kid, having a parent who shared your pain to whine about you and hen refuses to try the things people suggested to help.

  2. If anyone wants to find a source of “clean” meltdown videos to know what meltdowns are like, I’d suggest checking out the Youtube channel streamofawareness, by autistic self-advocate and anti bullying activist Cyndi H. She posts videos of her own meltdowns with her own consent to show people what adult autistic meltdowns look like (and they’re not much different from kid meltdowns, btw., but these videos were posted by someone who would not experience further humiliation as a result)

    She also posted a video or two of her own drunkenness at parties to show what drunkenness looks like in autistic people too, for that matter (and that latter one is one you usually don’t see explored due to constant infantilization and the resulting assumption that autistic people would never go out and drink wine). And she also has some videos up simulating the autistic experience, if anyone is interested – stimming videos, a sensory simulation, and one called “Come into my World” that isn’t explicitly stimming but instead shows the types of details autistic people pay attention to that neurotypicals often don’t notice.

    Link to her channel:
    https://www.youtube.com/user/streamofawareness/videos

  3. My parents have never videotaped me in distress. Ever. They put down what they were doing and helped me.

    I can only imagine the type of shame this must breed in autistics, to be taped during one of your worst moments and have it shared for other people to shake their heads at.

  4. One thing I will say, the channel that posted the meltdown at the mall video has said that they check with their sons to make sure that it is okay for them to post videos of them.


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