Publicly Exposing Autism Meltdowns: Violation of Privacy or Raising Awareness?3 min read

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.

 

4 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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