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fablebird
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30 Jan 2015, 3:58 pm

I wrote about this on my blog, but I have a seething hatred of parents who film their autistic children having meltdowns and posting the videos on Youtube, painting it as a humanitarian "showing the world the horrors of this disease". I f*****g hate it--look up "autistic people" on Youtube and look at how many parents do this. It's inhuman.

You probably all know this, but autistic people cannot control themselves during a meltdown, and therefore consenting to being filmed is ludicrous. We can't consent. You're just humiliating us by showing the world us at our most vulnerable. We didn't even choose to have a meltdown in the first place; we aren't tantrumming toddlers doing it on purpose. You're taking advantage of us--you're pity-mongering. Classic ableism.

While she didn't post it on the internet, my mother once filmed me during a meltdown. She showed it to my dad, my grandma, and my therapist. I was livid, but of course she didn't understand.

And now to see that this happens to my brethren at the hands of the people who should be taking care of them!

Disgusting. Just disgusting.



OliveOilMom
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30 Jan 2015, 5:41 pm

I don't see why parents would post it to YouTube. That does seem cruel. I do understand your mother filming it and showing it to your therapist though, because she probably wanted to make sure the therapist understood what she was saying about the severity of the meltdown or about a certain behavior during it or something like that. What she did was basically no more than keeping a record of things she needed to talk to the doctor about. I can also understand showing it to your dad because she was probably concerned and he's also your parent and she wanted to know what he thought I'm sure. That's not the same thing as showing it to unlimited strangers.

They may film people in hospitals or facilities and with their or their parents permission use it academically, to show students so that they can understand the meltdown, because if you haven't ever seen one you really don't have an idea what you are in for sometimes. They do vary in intensity and quality and length.


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kraftiekortie
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30 Jan 2015, 5:51 pm

I think there should be a term which replaces "Able-ism." There is nothing wrong with being "able" to do anything.

How about: "Anti-diversity" or "anti-neurodiversity."

Yeah...I've seen some of those youtube videos. There was one where a kid was described as "severely autistic"--yet, he was able to write and draw. He made attempts to communicate. It almost seemed like the meltdown was staged in some way.

I was most irritated when the mother said "this is autism." No, that is not "autism" in a nutshell, like she claimed. Autism is not all negative! Autism could be positive as well.



androbot01
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30 Jan 2015, 7:12 pm

These parents will find a special place in Hell, I'm sure.



stacylynn
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30 Jan 2015, 8:40 pm

Parent filming isn't okay on my standards. Neither is the school principal filming you :ninja: . It only gets more upsetting.



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31 Jan 2015, 4:10 am

I do think there is a difference between doing it to make fun of them and doing it to show everyone what a meltdown looks like in autism and what it's like. I did see one video of a kid crying and he was four and his cries looked like mine when I was a child when I would get very upset about things. If I remember correctly, the kid was upset because he was trying to play a pretend game and he didn't get his way so he started crying and he was four with Asperger's. I remember I would cry like that when I was a kid when things didn't go my way so I would get very upset like that. I remember the argument in the comments about how that is normal behavior the kid was doing and other people telling them how it's autism.

Then I remember seeing another video of an eight year old boy crying because they went to the "wrong" playground so he had a meltdown and the mother just stood there with him while her daughter stood there and waited and it took him 45 minutes to get over it and then enjoy the playground. It looked like he was having a tantrum because that is how it would look to the outside world who wouldn't know what is going on. But the mother was patient and stayed calm and she didn't give in because she was trying to teach her son flexibility so she stayed patient and just waited. I remember she got criticism for it in the comments and other positive comments like how patient she is and other comments about how they didn't like change either but they were not autistic but could still relate to her child. The mother did tell her kid ahead of time what playground they were going to but he misunderstood somehow so he wasn't expecting a different playground.

I think they are doing it to be educational and they aren't doing it to shame them or make fun of them. I think it's for people to see if they want to know what meltdowns look like in an autistic child. It's not something I like to watch so I don't seek for those videos.


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CockneyRebel
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31 Jan 2015, 7:41 pm

androbot01 wrote:
These parents will find a special place in Hell, I'm sure.


I'm thinking this as well. What if the children are told about their autism in a few years and they decide to look up some information on YouTube and they find out that their parent(s) have posted their meltdowns? What are the parents going to do when their kids bring those videos to their attention, while asking mum and dad if they really love them or not. I apologize. I'm feeling sensitive about this.


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PlainsAspie
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01 Feb 2015, 11:23 pm

One side of the coin is that this is the only way to bring awareness to how challenging autism can be sometimes. I don't think that anyone has the right to sacrifice someone else's dignity and privacy for the greater good of spreading awareness.



NoBody
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03 Feb 2015, 8:38 am

I hope the ad revenue they generate from these videos goes to the kids college fund! This is often justified in many ways but handy cam footage from mom and dad educating the world instead of looking after their creation is poor form on any level.



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03 Feb 2015, 11:06 am

That's disgusting and horrifying.



Sammondoa
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03 Feb 2015, 12:44 pm

Those parents don't understand how much damage they may be causing. It is tough being a kid, autistic or not. It is especially hard when the people closest to you, don't seem to understand you. I was lucky.

As soon as I was diagnosed my mom dove into every piece of information on Aspergers' and Autism she could find! Whenever I had a meltdown at school, even before I was diagnosed, my mom always came in to survey the situation. She always made sure I was all right physically, mentally and emotionally. She was my advocate through elementary, middle, and high school. She always fought hard so that I could feel safe and happy.

If she hadn't fought for me like she had, I wouldn't be alive today. I am grateful every day to have such a remarkable woman in my life. It makes me feel sad that not all parents can be like her.



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03 Feb 2015, 1:42 pm

I filmed one once, but not for youtube! I filmed it for some family members who had never seen her meltdown who were insisting she would be "ok" to stay with them for a weekend and go to an amusement park with them.... Then I deleted it after I showed it to them. Who would post that on youtube?



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03 Feb 2015, 3:43 pm

Yall have seen that one woman on YouTube with the very low functioning adult son haven't you? She has filmed all kinds of stuff and put it up there. I don't really think her son will ever see it, and I'm not sure what her point is with so much stuff, but she's got two channels I think. I'll try and find her and post the link so ya'll will know what I'm talking about.


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OliveOilMom
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03 Feb 2015, 3:45 pm

She's CDFoakley and she's got 50 something videos. She has an adult very low functioning son who also has other issues.

Her other one is KGaccount. It's got even more videos


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My forum is still there and everyone is welcome to come join as well. There is a private women only subforum there if anyone is interested. Also, there is no CAPTCHA. ;-)

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Buzz201
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03 Feb 2015, 5:19 pm

fablebird wrote:
I wrote about this on my blog, but I have a seething hatred of parents who film their autistic children having meltdowns and posting the videos on Youtube, painting it as a humanitarian "showing the world the horrors of this disease". I f*****g hate it--look up "autistic people" on Youtube and look at how many parents do this. It's inhuman.

You probably all know this, but autistic people cannot control themselves during a meltdown, and therefore consenting to being filmed is ludicrous. We can't consent. You're just humiliating us by showing the world us at our most vulnerable. We didn't even choose to have a meltdown in the first place; we aren't tantrumming toddlers doing it on purpose. You're taking advantage of us--you're pity-mongering. Classic ableism.

While she didn't post it on the internet, my mother once filmed me during a meltdown. She showed it to my dad, my grandma, and my therapist. I was livid, but of course she didn't understand.

And now to see that this happens to my brethren at the hands of the people who should be taking care of them!

Disgusting. Just disgusting.


If you're in the UK (and I'd imagine in most of the rest of the world), it's your parent's/guardian's consent that's required to film until you become an adult*, and if you're in a pubic space, they probably don't need consent at all. (I believe consent is only required when there's a reasonable expectation of privacy.)

*18 in the UK, except for certain mental illnesses when it gets upped to 24.



cron