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).

At time of writing, Autistic Barbie – an autistic mother of an autistic child – has made a petition for YouTube to ban and remove autism meltdown videos, making a clear case that they go against YouTube’s own community guidelines. Here is the link to the petition, if you already acknowledge that public meltdown videos are wrong and want to do something about it. [Oh, and all links on Autistic Not Weird open in new tabs, because I don’t like my reading interrupted either.]

With that out of the way, here are the ten points.

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

Ok, deep breath.

1. When vulnerable children are filmed and shared against their wishes, they learn that their consent can be ignored.

Yep, starting with the big one. As a professional educator (specifically a special needs tutor), I’ve had safeguarding training coming out of my ears. And I have HUGE safeguarding concerns when it comes to sharing meltdown videos.

These concerns relate to the fact that the meltdown victim is never “allowed” to say no to being filmed. In some cases, like in the picture below, the child literally shouts “stop filming!!” but his parents uploaded the video to Instagram anyway.

I mean, the title of their page was “Autism Sucks”, so they were never going to have the most progressive attitude towards their son’s condition. But autism or not, you’d think his consent would be seen as marginally important.

I’ve spoken about the issue of autism and consent in another article: The Stop Rule: teaching children consent through play. And also a little bit here too: Respectful Autism Awareness: how to discuss the struggles without increasing the stigma. So I’ll keep it short here, but with a CONTENT WARNING FOR DISCUSSION OF SEXUAL ABUSE.

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.

And the more these videos get shared, the more their parents will see a demand for them.

END OF CONTENT WARNING.

2. You don’t have the consent of the meltdown victim to share their most terrified moments.

This sounds like an extension to point 1, but it’s not really. This is a point about whose consent you truly need.

We often talk about how autism affects families as if the autistic child themselves doesn’t actually exist – or only exists in the form of their behaviours, and not as a legitimate person in their own right. But in (almost) every single case of meltdown-sharing, the parents and the child have the opposite opinion: the parents have given consent for the video to be shared, but the child “starring” in the video has not.

By sharing a meltdown video, you are making a definite statement as to whose consent means more to you.

Children have privacy needs too. Autistic and disabled children have privacy needs too.

(And it’s a shame I needed both of those sentences. A child doesn’t lose their right to dignity and autonomy just because they’re autistic. It’s a diagnosis, not an excuse to be selective about their rights.)

3. The videos stay on the internet forever, and every share makes it more certain.

I made pretty much the same point in this picture for ANW’s Facebook page.

It’s an oft-forgotten fact that autistic children will one day be autistic adults.
And to those who say “well my child will still be profoundly disabled as an adult, they won’t be surfing the internet and seeing their own video”, I’d like to refer you to points, 1, 2, 4, 5, 6, 7, 8, 9 and 10. The fact that a person doesn’t see their own humiliation doesn’t justify it taking place.

We should also remember that online, your content can leave your control very quickly. Even if the parents uploading the video have a change of heart, delete their meltdown videos and never share them again, it may already be hosted elsewhere – in many places by many other people.

Sharing meltdown videos increases the chance of this happening. And besides, wouldn’t you feel better if your conscience is clean and you’ve played no part in immortalising a vulnerable child’s distress?

4. Meltdown videos raise awareness of the parents’ troubles, not the autistic person’s.

You wouldn’t think this is the case, given that an autistic person is at the forefront of the video. But it’s true.

Spot the difference between these two sentences.

“Do you have any idea how difficult it is to raise an autistic child?”

“Do you have any idea how difficult my child finds their struggles?”

It’s an important difference that often isn’t respected enough. The first raises awareness of parenting; the second raises awareness of autism.

Parenting awareness is clearly important. Parents need to know they’re not alone, and sharing insights and perspectives can be hugely helpful. But there needs to be a recognised distinction between “parenting awareness” and “autism awareness”.

The most reliable way of distinguishing between the two is asking this question: who is intended to benefit from it?

If a video, picture, article etc. benefits an autistic child, but doesn’t necessarily improve the lives of their family members (except for the natural improvements that come from having a happier child), then it is pure autism awareness.

If it benefits the parents but does not improve the lives of the children, it is pure parenting awareness.

If everyone benefits, you could perhaps say it’s both simultaneously.

Meltdown videos increase attention towards the family’s situation, whilst actively making the autistic person more vulnerable. That alone qualifies it as parenting awareness, not autism awareness.

A one-sentence summary: sharing a meltdown video does nothing to raise actual, meaningful autism awareness.

5. The videos may be triggering for your autistic friends.

[By “triggering”, of course, I mean actually, literally triggering in the PTSD sense. Not “triggering” in the way that most of the internet seems to use it.]

This point, of course, assumes you have friends who are autistic themselves.

If this doesn’t apply to you, find some autistic people and make friends with them. We’re pretty awesome when you get to know us. (Come to think of it, we’re pretty awesome even if you don’t.)

6. There are healthier ways to discuss autism-related problems.

Of course, if Autistic Barbie’s petition is successful and meltdown videos are banned from YouTube – and even if the United Nations were to make it illegal everywhere on every platform on Earth – that still wouldn’t solve the problem. Because these people would still be having the meltdowns and their needs should still be discussed.

This is one of the most common counter-arguments I see when I advocate against meltdown-sharing: “if we’re supposed to keep silent about our children’s meltdowns, how are we supposed to improve their lives?

The answer may be a complex one, but it certainly doesn’t come with the words “like and subscribe”. It may, however, come with other equally valid ways of discussing the issue. The written word, for example. Blogging anonymously. Asking the person when they’re not melting down what means of sharing they’d be most comfortable with. (And if the person can’t make their preferences known, assume the most conservative option.)

But don’t you have to see meltdown behaviours to understand them? Not necessarily.

I started receiving safeguarding training when I was 18, thanks to my church youth work. I am now 34 and have worked with young people in a wide range of contexts, and with that has come a huge amount of training.

Never once have I seen a meltdown video being used as a valid, legitimate training tool. Because those running safeguarding courses generally know better than to put disabled people at increased risk (as previously described).

And yes, this includes in my recent Team Teach training, which was specifically tailored to equip staff with the understanding of how to resolve situations that could lead to one of our students melting down. Instead, a clip from a fictional resource was used, with a (quite talented) child actor.

There are better ways than meltdown-sharing. Much better ways.

7. Autistic people deserve to be defined by their strengths.

A while ago, in the private group for Autistic Not Weird’s Patreon supporters, a few of us jokingly came up with the “Autistic Not Weird drinking game”. Rule number one was “take a shot whenever Chris says ‘play to your strengths’”.

And I make no apologies for making a lot of people very drunk, because it’s one of the best bits of advice I can give for living a rewarding autistic life. (And yes, this goes for disabled autistic people too. Because, you know, they’re still human.)

I have seen both sides of the coin. I spent years defining myself by my weaknesses, and I have now spent years defining myself by my strengths. The self-esteem difference is immeasurable. And this is why it’s important I include this point here…

…because if a video of an autistic child’s weakness goes viral, it will almost certainly become what they are best-known for. For the rest of their lives.

No matter what their achievements, no matter what they overcome along the way, no matter what their strengths are, they will forever be “the kid from that meltdown video”.

And they deserve better than that.

Edit– upon reading this article, a friend of mine pointed out that a similar fact may become true for the parents sharing the meltdown video. That no matter how they turn their own behaviour around, they might always be remembered as “the parents who shared that meltdown video”. The internet doesn’t forget things easily.

8. Abuse does not deserve page hits.

Yes, I call it abuse.

And this is not the ranting of an autistic man who feels like he’s been wronged; this is the professional opinion of a former primary school teacher and special needs tutor, who travels nationally and internationally to deliver autism training to schools, charities, NHS teams, private companies, and various others, and someone who has received safeguarding training throughout his whole adult life in both professional and voluntary contexts.

When I use the word “abuse”, I mean it. Not all abuse involves physical contact against a child. Sometimes, abuse is leading a child to believe their consent can be discarded. Sometimes, abuse is publicly punishing a child for actions that happened beyond their control – and in some cases may not even be remembered. Sometimes, abuse is exposing a child’s most vulnerable moments on the internet (and no, sharing with “best intentions” is not a defence).

Don’t be complicit. Don’t pollute your timeline with these videos.

9. Do you really think the ensuing conversation will be healthy anyway?

Negativity breeds negativity.

Negative videos breed negative comments.

Very few people are going to watch a video of a vulnerable person melting down and say “oh, thank you, I understand so much more about autism now!” Knowing the internet, the comments are more likely to descend into one of the following topics:

  • “Back in my day we didn’t have all these autisms.”
  • “That spoiled kid needs discipline.”
  • “This must be so difficult for those poor, poor parents [again, disregarding the child’s own experience].”
  • “We need a cure. Is there a charity that tries to stop these people existing?”
  • “This is why euthanising should be legal.”
  • “LMAO bruv this is lit, let me tag my mates @Fortnite666 @ProGamer420 @[Some kind of racial slur]696969, check this hilarious kid out”

On that last note: a couple of months ago, the social media site TikTok was widely condemned for taking no action against the #autismchallenge craze that its users were taking part in. Basically, TikTok users with low moral standards would try to act as disabled, weird or socially inappropriate as possible.

You can guaran-bloody-tee that most of those horrible users went looking for autism meltdown videos for source material. And it worked.

Oh, and you know how I said the videos stay online forever? In a few clicks you can go to YouTube and search for “funny autism meltdown”. Not everyone watching these videos seeks to learn from them.

10. It’s just morally wrong.

Somehow, even after the previous nine points, I still feel the need to finish with this one.

Because there’s something about disability (including autism) which makes people think anything is justified. That actions that would be unacceptable towards non-autistic non-disabled children are suddenly seen as ok because of “autism awareness”.

Except, it’s not about awareness. It’s about the fact that disabled people are all too often seen as “less deserving” of dignity.

We should always, in every interaction which impacts an autistic person’s dignity, ask ourselves this question: would this be acceptable if the child weren’t autistic?

Right now I’m thinking of a friend’s profoundly disabled nonverbal son (then aged ten), who had a toileting accident at school. Due to a lack of resources, his school staff sent him home in a pair of girls’ tights. His mother quite rightly asked: “if my son had been verbal, would you still have done this?

Because it has to be said, I rarely hear of non-disabled children being treated this way.

(See what I did there? I discussed an embarrassing issue about a sensitive situation, in a way that raised awareness of the difficulties endured by disabled children. And I did this using just words, without embarrassing videos, and at the end of it you still don’t know who the child is. See how easily it can be done?)

Yes, I use this picture in my articles all the time. Even if we’re nowhere near World Autism Awareness Month. And I’m fine with that.

In closing:

I think I’ve covered everything I intended to cover, with the exception of this one final point.

Meltdown-sharing isn’t just bad for the aforementioned reasons. When you personally share them, you’re not just negatively impacting the person in the video.

You are subtly teaching your friends that meltdown-sharing isn’t a bad or harmful thing to do. And with every person who is taught that it’s ok, the autistic community has one more person to teach otherwise.

Let’s keep it unacceptable. And if you see a friend meltdown-sharing, please feel free to link them to this article.

For those who need it, here’s a link to the YouTube petition again. You may have gathered, but both for the dignity and for the literal safety of autistic people, I dearly hope it has a positive impact.

Finally, as always, you’re more than welcome to join Autistic Not Weird’s Facebook community, or even become a Patreon supporter (Patreon, for those who don’t know, is the website which offers supporters rewards and perks in exchange for helping me write for this site for a living). If you feel my work is worth supporting, you’re welcome to check it out and see what appeals to you.

Take care,

Chris Bonnello / Captain Quirk

-  

Are you tired of characters with special needs being tokenised and based on stereotypes, or being the victims rather than the heroes? This novel series may interest you!

Underdogs, a near-future dystopia series where the heroes are teenagers with special needs, is a character-driven war story which pitches twelve people against an army of millions, balancing intense action with a deeply developed neurodiverse cast.

Book one can be found here:

Amazon UK | Amazon US | Amazon CA | Amazon AU
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Chris Bonnello is a national and international autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).
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4 Responses

  1. Laura

    I had no idea that sharing like this was even a thing. Absolutely abhorrent. Thank you for your well written blog post.

    Reply
  2. C Jenkins

    You hit the nail on the (non-autistic) head (figuratively speaking, but we’re not supposed to get metaphors!)

    Reply
  3. Maaya Hitomi

    Hey, so I would love to read your post, but it is actually inaccessible to me. Because I can’t select highlight text, I can’t put it through my Text-to-Speech app.

    Reply
    • CaptainQuirk

      Hey Maaya, no problem- if you want I could email you the MS Word version? (WordPress’ email to me displays the address you used to leave the comment- let me know if that’s where you want it sent.)

      Reply

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