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Featured Never share an autism meltdown video

Discussion in 'General Autism Discussion' started by Kalinychta, Jul 17, 2020.

  1. Kalinychta

    Kalinychta Well-Known Member

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    An article was published on the website "Autistic, Not Weird" today titled "Ten vital reasons to never, ever share an autism meltdown video." I've never had a meltdown before, but the idea of being filmed in the midst of one and the video then being uploaded to social media sites without my permission is a horrifying thought. The author of the article says that such videos are regularly shared under the guilt-assuaging banner of "autism awareness" when really, all told, it's just plain voyeurism. So anyway, I've copied out the first few paragraphs below followed by the link to the full article for those who wish to read it in its entirety.

    By the way, I've noticed that the term "meltdown" is misunderstood by many people on the forum, who believe it means feeing very anxious and upset, so let's clear that up right quick: an autism meltdown is a complete and total loss of emotional control - crying hysterically, screaming, hitting oneself or others, falling to the floor, biting, kicking, etc.

    (Side note: If you use Instagram, you might consider finding the "Autism Sucks" page mentioned in the article and politely reiterating the author's concerns, if indeed you agree with them.)


    Ten vital reasons to never, ever share an autism meltdown video
    by CaptainQuirk

    We see them far too often. Videos of an autistic child (or adult) in extreme distress, shared across the internet in the glorious name of “autism awareness”, perhaps even with a divisive or gatekeeping comment such as “this is what real autism looks like”.

    The motivation, of course, is to display the problems that all too often kept behind closed doors. And whereas the issues do need discussing and addressing, perhaps there’s a better way to do so than uploading a publicly viewable video of a vulnerable person experiencing levels of anxiety most humans can barely empathise with.

    But aside from the distress of the autistic person, and that the video is publicly viewable… to me the most depressing part is looking in the corner and seeing that the video has had 53,000 shares or something. These are not videos taken by a parent to show to a relevant professional in a confidential environment (e.g. a diagnostician seeking evidence, or a teacher who doesn’t see a student’s home life). Under those circumstances, filming a meltdown is fine and – if handled appropriately – may even help the person's needs to be met. The videos referred to in this article are specifically taken to be uploaded and spread as widely as possible, privacy and dignity be damned.

    This article isn’t directed at the people who might film a child in extreme distress, publicly upload it and call it “autism awareness”. Because let’s face it, Autistic Not Weird (and its Facebook community) probably isn’t the kind of place that would appeal to such people, what with my focus on autism empowerment, defining people by their strengths, and treating the vulnerable with uncompromising dignity.

    This article is directed at the other 53,000 people, who give power to that video by spreading its influence. And who, knowingly or otherwise, put the autistic person in more danger with every share (trust me, I’ll go into plenty of reasoning later).

    Link to full article:

    Ten vital reasons to never, ever share an autism meltdown video - Autistic Not Weird
     
    Last edited: Jul 17, 2020
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  2. Pieplup

    Pieplup The Penguin

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    I agree that metldowns shouldn't be shared online but not for the reasons the author says it I think it's more because no one wants to be defined by their worst moments. Which is what the video is doing.
     
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  3. Major Tom

    Major Tom Searching for ground control... V.I.P Member

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    I don't know, I think people use the term "meltdown" way too frequently. It may be a good tool to show what a real meltdown is, so that people know not to use that word for simple frustration, stress, etc. I've thought about videoing my son melting down and putting it on here, but usually I'm too busy trying to keep him safe to make a video.

    I can see where people not on the spectrum would twist it into something it's not though too.
     
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  4. Pieplup

    Pieplup The Penguin

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    Yeah people often think just getting upset is a meltdown, and lashing out is a meltdown. There is also a lot of confusino around meltdowns in general. I think that the general public learning about what a meltdown is and what to do if you see one is a good thing. But most of the times they aren't used as a learning experience. Its' more of a LOOK WHAT I HAVE TO DEAL WITH kinda thing. I don't get why these parents have no empathy for what their child is going through whatsoever.
     
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  5. PastelPetals

    PastelPetals Active Member

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    I have meltdowns every once in a while (I think two in the last three months) but I used to have them every day as a kid...the feeling of no control is awful and filming people when they are that vulnerable is just as awful.
     
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  6. Ezra

    Ezra Relax, it's just chaos.

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    This parent documented her son's meltdowns. But she also documented all aspects of his autism. Seemed like a genuinely caring and loving parent and to me overall showed that Kreed was quite likable and what life was like for him.

     
    Last edited: Jul 17, 2020
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  7. Aspychata

    Aspychata Serenity waves, beachy vibes

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    Thought the video was difficult to watch because l felt l wouldn't be able to help him. Like telling a joke or trying to distract wouldn't work. Also felt he was in great physical pain and he needed help.
     
  8. Ezra

    Ezra Relax, it's just chaos.

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    Difficult to watch the first part but in the end it all worked out alright and he was okay.
     
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  9. Major Tom

    Major Tom Searching for ground control... V.I.P Member

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    What a good mother. I see my son melting down like this and I have a hard time verbalizing and staying calm like she does, and I should be doing. Another good thing is that he can communicate through that tablet. That's another thing I could try.

    To me it seemed like the helmet was a trigger for him, but I know that sometimes it's necessary so that nobody gets hurt.
     
  10. Ezra

    Ezra Relax, it's just chaos.

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    His situation was pretty complected. Had a lot of physical issues along with the autism. Was in the hospital a lot.

    I suggest starting out with PECS and if that works go onto an AAC device.
     
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  11. Major Tom

    Major Tom Searching for ground control... V.I.P Member

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    We are working on PECS with my son with a lot of positive results. We have pictures of everything in his daily schedule, so he knows what to expect during the day, and it seems like he's starting to understand what to expect on the weekdays at least. (The weekends are a little trickier).

    My son's daily activity chart.
     
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  12. WildCat

    WildCat V.I.P Member

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    If someone consents to it and are fine with that that's one thing. If someone doesn't approve of their behavior being spread across social media though or if there are consequences to that, maybe try and take that into consideration and DON'T SHARE IT online.

    I say that knowing how much of a minefield social media (and the internet in general) can be, how quickly content can spread from person to person and how people are quick to form judgments.
     
    Last edited: Jul 18, 2020
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  13. Kalinychta

    Kalinychta Well-Known Member

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    I don’t know how many people read the full article, but the author points out that children (and adults) cannot consent to being filmed during a meltdown. It teaches them that their consent can be ignored and that people they trust (parents) can and will film them during traumatic, humiliating moments, and there’s nothing they can do about it. He points out that in autistic people this is particularly dangerous.

    Excerpt:


    Part of the autistic experience (a part which isn’t talked about enough) is being encouraged to believe that everyone else automatically knows better. That your opinion is wrong by default. That if you have one opinion/perspective/experience and a non-autistic person has another, the other person is probably right.

    If an autistic child self-advocates by saying “no”, but their refusal is disregarded (or even labelled as “defiant behaviour” by an ABA therapist), then this becomes their typical understanding of the world: that you can say “no” if you want, but adults are allowed to override your wishes.


    Imagine you’re the child in the picture above, that you’re being taught to believe that your consent is optional, and others’ feelings take priority over yours. That you should always go along with an adult’s decisions, even if they make you feel deeply uncomfortable.

    Now imagine that an abusive family member puts you in a room, gets out a camera and tells you to take off your clothes.


    In this situation, how long do you think the autistic child will spend self-advocating before just obeying the adult?

    This is the most chilling part of public meltdown videos, and I’m glad I got it out of the way early. When I see a child telling their parents to stop filming, and the parents subsequently ignoring them, I see a child being made more vulnerable to abuse.”
     
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  14. Major Tom

    Major Tom Searching for ground control... V.I.P Member

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    Sure, during a meltdown you couldn't give consent, because you are so worked up and wrapped up in the meltdown, but you could ask "Is it ok if I film you having a meltdown for documentation purposes?" When they are calm and if they can communicate.

    I just dislike how people throw around the term meltdown and they really aren't having a meltdown, it's just common stress, anxiety, etc. Meltdowns are extreme and usually include a total loss of control for extended periods of time. I've seen my son have them for literally hours and it hurts me to see, hurts him even more to go through. So it pisses me off when all these people throw the term around so casually.
     
  15. Kalinychta

    Kalinychta Well-Known Member

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    I know what you mean. I actually put a definition of “meltdown” in my original post because I’ve noticed that lots of people here think it means being really upset or feeling really anxious, like you said. It’s important that we use terms correctly.
     
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  16. Ezra

    Ezra Relax, it's just chaos.

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    I am pretty certain with the video I posted, the person was in full agreement about being filmed, considering the large number of videos made when he was doing alright and his mom saying things like "okay lets show everyone how you...". The series of regular videos ran for years. I believe he was just as interested in having them produced as his mother.

    But I have seen others where there was no indication the autistic person gave any consent or were aware they were being filmed. And that is not acceptable in my opinion.

    The brief video Major Tom posted in another thread was alright because it did not show anything that would be embarrassing for his son.
     
    Last edited: Jul 18, 2020
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  17. Aspie_With_Attitude

    Aspie_With_Attitude Well-Known Member V.I.P Member

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    On my YouTube channel, I actually did have my say about why you shouldn't go sharing Meltdown videos on social media. This is the full video where I explain what Meltdowns are and it's towards the end is where I do mention how terrible it is to share the videos of children having a meltodwn.

     
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  18. KagamineLen

    KagamineLen Gay and autistic midlife weeb.

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    My mother used to audio record my meltdowns and play them back for me when I was calmed down to try to use shame as a way to get me to stop having meltdowns.
     
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  19. Major Tom

    Major Tom Searching for ground control... V.I.P Member

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    My goodness, I'm sorry to hear that... No wonder you are defensive...
     
  20. Pieplup

    Pieplup The Penguin

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    did she continue doing this after she realised it wasn't working?