Autism Children & Families mental health Narcissists Neurodiversity

Meltdown Videos of Autistic Children – Awareness or Exploitation?

They're not hard to find. You can dig them up on blogs, Youtube and even the news with a quick Google search - disturbing videos of autistic children in distress, while parents film. Viral sympathy videos could quickly be viewed all over the world. Once a video is out there it is forever. The consequences of this are not always immediately apparent, but can be lifelong, impacting relationships with peers (kids are mean and bullies could easily use this footage), future employers, and others.

They’re not hard to find. You can dig them up on blogs, Youtube and even the news with a quick Google search – disturbing videos of autistic children in distress, while parents film.

Viral sympathy videos could quickly be viewed all over the world. Once a video is out there it is forever. The consequences of this are not always immediately aparent, but can be lifelong, impacting relationships with peers (kids are mean and bullies could easily use this footage), future employers, and others.

What is a meltdown? It looks a LOT like a tantrum, but there is a big difference. Tantrums are intended to manipulate a situation while meltdowns happen because of overload, often resulting in a loss of control for the autistic person. The brain has had too much, things have been building for a while and now the person in front of you can take no more – so they meltdown.

Like a volcano, the pressure must be released, in a rush of emotions and intensity. The brain is no longer able to process information and needs to reset. The types of interactions I see in these videos would not allow the needed reset to happen. When I was younger, being left alone in a quiet room was often the best way for me to recover – not much has changed through the years. This is NEVER what I see in these videos. The environment is always tense and overstimulating.

What do I see? I see a child in agony. I see a child overloaded. I see a child in extreme stress and it breaks my heart. Do you know what ELSE I often see in these videos? MOST of the time I see parents making the child’s distress and overload worse by touching, holding, and interacting with the child, essentially keeping the meltdown going by not allowing the child to calm down.

When are these videos appropriate? I understand that these videos can be useful for the diagnostic process as something shared with a medical provider but these videos should NEVER make it to the internet.

They do not raise awareness of autism. Most people think of this exact type of thing when they hear autism, it is why many adult autistics are dismissed.  The videos that I’ve seen were not created to raise awareness of autism, but to raise awareness of “the suffering of parents of autistic children” – at the expense of the autistic child in question.

We have strict laws, protecting the privacy of people’s medical information, but parents are allowed to ignore their child’s rights by sharing information and footage publicly,  without regards to the for potential harm in removing the child’s privacy and consent.

How is this legal? IS it legal? It shouldn’t be.

 

24 comments

  1. I agree with you completely. These videos should be meant as a teaching tool and done in an ethical manner. I don’t quite understand why parents might do this. Maybe a cry for help? To garner sympathy? Shaming? I can only hope that people will comment in a constructive manner to help these parents understand how to help theirs child and that these parents will listen.

    Liked by 2 people

    1. Some parents do this because there are people out there including their family members that believe the child is just a brat. I have an autistic child and I have been told that it’s just an excuse for him to be a brat. Well it’s not sometimes parents take these videos to show how much overload there is…. watching him go through a meltdown is exhausting….. he’s exhausted after I’m exhausted after his father, and siblings are all exhausted afterwords…. there are meltdown where I can’t touch him, there are meltdowns where he needs to be rocked and hugged, there are times that I have to put him in the darkest room in the house… which is hard since he rips all the curtains down…. Some of the parents that post these videos really just need some reassurance that they can get through this melt down, that they can keep going, that they’re not failing, that they’re not alone.

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  2. I agree with you – if it’s done sensitively and for an educational purpose: perhaps. But everyone has a right to privacy, it’s a human right. I don’t like people oversharing pictures of children etc. as they don’t often get a say in what gets posted about them, and I do think the same goes for anyone who is unable to give consent. I blog about Husband and our struggles with regard to his disability and how the system doesn’t help, but I wouldn’t DREAM of posting something so personal and sensitive about him.

    Liked by 2 people

    1. Children have the right to privacy, and deserve to know what’s even being posted about them online, even when you as the parent think it’s something that should be shared (or even celebrated).

      Liked by 2 people

  3. It’s exploitation and a violation of trust for what? Virtual pats on the back for the “poor parents”? I hate when people complain about their kids online for any reason. It’s forever and like you said – other kids can be mean.

    Liked by 2 people

  4. It’s legal because of free speech, something I fiercely support in general. But you would have to be a pretty shtty and selfish parent to post a video like this. Thankfully, videos on the Internet weren’t a thing when I was growing up in the 80s, and I’m glad because I can remember quite a few times when my mom would embarrass me against my wishes with complete and total disregard for my feelings, and I definitely had some rough days like this.

    I’ve also never been actually diagnosed to be on the autism spectrum, but I really do believe that I would have been had I been, say, born after 2000.

    Liked by 2 people

    1. Oops… my use of asterisks apparently were interpreted as italics. I used an asterisk in the middle of “sh-tty” so as not to use the actual word, and there was another one after “growing up” to refer to the footnote at the bottom. But I think it’s still readable what I meant.

      Liked by 1 person

  5. To be quite honest, I have a 17-year old with autism, he’s moderate/severe with sensory deficits. He’s well-behaved for being autistic, but I do not agree humiliating your child on any social media site. These are children, they need not to be a mere spectacle of being on public display. Kids with autism have feelings, and yes they care about who’s looking at them when he or she is experiencing a melt down. Applied Behavioral (ABA) is the only scientific form of behavioral therapy for individuals with autism spectrum disorders (ASD), and/or delay developmental disability disorders, that is based on Skinner’s (1953) theory. ABA helps children cope with social skills, that in case of a meltdown occurs then coping skills are taught to avoid a big public spectacle. Professionally, I am a doctorate student for education, and desire to educate parents/legal guardians the “do’s and don’ts of parenting a child with autism or any other delay disability.

    Liked by 1 person

  6. I’ve posted videos of my own meltdowns (autistic adult here) solely because I chose to. I much prefer people gawk at me punching my head and crying / screaming than the nonverbal child who had no choice or say in their meltdown being publicized on the internet.

    I don’t do it to say “poor me” but to say “hey, this is a small fraction of my experience, but I don’t pretend it doesn’t exist!” (Because I got accused of being “super high functioning” and “you don’t know what real autism is!” by parents.)

    I’ve shown my self-injurious meltdowns. I’ve shown the severe bruising I had afterward. I’ve talked about what meltdowns feel like to me. It’s funny that I still get dismissed because I can speak. It’s like speech is the ultimate decider in how disabled I actually am by my autism. Never mind the sensory issues and social difficulties, right? Of course!

    Anyhoo, love this blog entry, totally agree with everything in it.

    Liked by 2 people

  7. I agree that if the person experiencing it wishes to post it for teaching purposes, that is much different than exploiting the crap out of someone, especially a child. I have a dear friend with DID and would never dream of filming the person without permission and posting it online without permission–

    Liked by 3 people

  8. Thanks for this thought provoking post. I don’t put pictures of myself on Facebook and I certainly wouldn’t put up any pictures or videos of anyone online. I am very uncomfortable with these videos of meltdowns posted by someone other than the party concerned. All people should have the right to decide what they consent to or don’t consent to, especially when it comes to something so private and so painful. That being said, it must be some kind of a cry for help on the parents’ part. Many probably have no clue that the best thing to do during a meltdown is to stop talking and stop moving ; their first instinct is to console their child by hugging and saying what they believe are comforting things. I don’t doubt the parents’ suffering, I don’t see why I would judge or doubt anyone’s suffering, but that does not mean we should not address this important issue. It is imperative that it becomes a reflex to consider the right of autistic people, of all people, to decide for themselves, always. We should be all the more careful when someone has trouble expressing themselves or is in a vulnerable state, not less careful!!

    Liked by 2 people

  9. I think that such videos should only be shown confidentially by the parents to professionals to aid diagnosis. It’s wrong to put them on social media. Those videos are there forever. You don’t know who is watching them. Copying them. Most importantly, it’s a breach of their children’s human rights. How many of us would consent to our most vulnerable moments being uploaded onto the internet to be gossiped about or ridiculed? I understand how some parents do it out of desperation. They don’t understand why meltdowns happen. The good thing about being an autistic parent is that I know why they happen. I know how to prevent or manage them to keep my child safe. NT parents don’t understand their autistic children. When they are challenged over uploading videos of their kids having meltdowns, they go on the defensive. It’s about them, not their child. Parents close ranks on us. They don’t see past their own agendas and in the middle of this is a child who may one day see themselves online. What would be the consequences of that? I’d imagine they would be incredibly damaging.

    Liked by 1 person

  10. I don’t agree with uploading these kinds of videos, who does it benefit?
    I am an NT (allegedly) parent with 2 boys on the spectrum. There is no one size fits all way of dealing with meltdowns. As a parent I have to learn what my children need when overwhelmed and overloaded, as I have to learn about my other NT children. There are times when it seems to come from nowhere but it’s not important at the time what causes it, it’s about keeping them safe, reaching them and being there for whatever they need. My youngest likes to be held tight it seems to reassure him, my older one likes a slight touch to let him know I’m there. We can’t always prevent a meltdown, we can spot the signs and try to mitigate but not always successfully. There’s a lot of parent bashing that goes on, ok sometimes we do go on about the difficulties but most parents have a moan about their NT kids too. I like to read stuff about people on the spectrum BY people on the spectrum to give me a better understanding of what may be going on in my sons heads, and I like to read about parents experiences too. Maybe if we all worked together and listened to each other and had regular dialogue then we can make the world a better and kinder place for everyone.

    Liked by 1 person

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