Sunday, March 8, 2015

On Digital Exhibitionism By Autism Parents: Why Parents Live Tweeting Their Disabled Children's Worst Moments Is Red Flag That Should Concern Everyone

Giving autism parents a bad name:  Jason & Kate Wells
credit Twitter
The Internet age has given rise to a dangerous type of exhibitionism among people in general, and people who need parenting courses in particular. This becomes dangerous when the pathological demand for public attention places a child at risk. There is a pattern I have observed among special needs parents who later do harm to their children. This is how the pattern plays out.

1. The parents spend over 60% of their days generating written content that disparages their child and presents themselves as martyrs for having to parent divergent children.

Isabelle "Issy" Stapleton credit Facebook
2. The parents escalate to posting videos of their children at moments of crises in order to support their case that the child is at fault for the failed lives of their parents. No one questions whether the parents induce crisis in order to record content that can be publicly shared.

3. The parents are successful in gaining either local or national media attention, thereby rewarding the production of content damaging to a disabled child that will remain on the internet forever.

4. The parents crowdfund for assistance from the community based upon the negative content produced about their children.

5. The parents attempt to murder their children.

6. The parents are defended by others for attempting to murder or murdering their children because prior negative content showing their disabled child at a moment of crisis is used as an excuse.

While all this is happening no one seems to ask:

How have the parents the time to videotape a moment when they should be keeping their children from harm to themselves and others?

How have the parents the time to constantly broadcast negative content when parenting the victimized child is such a tremendous challenge?

Alex Spourdalakis' photograph set in a funeral bouquet, credit HLN
Why any parent in good conscience  can believe it is okay to broadcast the worst moments their children experience to a global audience?

Why aren't the parents seeking mental health support for themselves if they have entered a state of depression so extreme that all content they produce about their own children is negative?

For those readers born before the internet and social media, imagine what it would be like to have your worst, most humiliating, childhood moments broadcast forever to anyone who chose to view it. There was a period when there were no rules to social networking, and parents would demand to be added to adult children's accounts only to post embarrassing and on occasion humiliating photos of their own children publicly to be viewed by the person's colleagues, peers, and complete strangers.  It took time for rules to appear that warned parents that the internet is a public broadcasting method and content posted on it can become viral and magnify harm done regardless of intent.

I am truly tired of this pattern of self-serving exposure at the expense of one's own neurodivergent children and frightened of its consequences. Do we believe this is not a problem? Examples of parents who followed this behavioral pattern:

Issy Stapleton's mother, whose blog about her was named The Status Woe,  and who drugged her, left her in a car and tried to poison her with smoke from barbecue grills.

Alex Spourdalakis' mother and godmother, who after massive media coverage and fundraising efforts using video of Alex in four point restraint naked on a hospital bed, tried to overdose Alex on sleep medication, then stabbed him repeatedly and violently to death. Not satisfied, they then stabbed his cat to death as well

London McCabe, 2014, credit NBC News
London McCabe's mother, who after adopting a similar style of blogging and successfully fundraising, made statements on camera in front of her son about wanting to "pull a Thelma and Louise", and later threw him off the Yaquina bridge. I could fill this blog with examples like this. It is simply too heartbreaking to do so.

 In the past, I tried to call out parents who exhibited these types of behaviors because I feel these acts are a sign of worse things to come and I strongly believe this is a pattern that will not end well. Posts like "You are NOT Adam Lanza's Mother"  are an attempt to show other special needs parents that these acts are dangerous, permanently harm their children, and are a red flag the parents need counseling. But the internet and any moment of media attention are lures that no voice of reason can overcome.

Apparently, parents Jason and Kate Wells have not garnered sufficient attention for themselves and have taken to live-tweeting their autistic teenage son having a meltdown on the excuse that they are educating others. I will not post the article about it. All I will say is they are a couple from Peterborough, Canada. Dehumanizing your own child does not educate anyone about autism. This degree of exposure of a vulnerable teen is no different from making them a sideshow act at a circus. It is abusive behavior and bad parenting. It is a display of the serious psychological problems the parents are having and is a sign that the parents need crisis counseling and intensive interventions for their own mental health and the safety of their neurodivergent son. It does not show anything about their son, his neurology, or his adolescence, except the parents' own ignorance of what is happening to their son when a meltdown is occurring and how to help him manage it in a humane, professional, and loving manner.

I take issue with any parent violating health laws, the privacy of their own children, and placing their children at risk of harm to feed their followers and gain social networking capital. I find it particularly disturbing behavior when the child is disabled, and may never be able to litigate against the parents for presenting damaging video content on the internet about them.

The most important take away from this latest episode of digital exhibitionism at the expense of a disabled teen is all of us who are parents to special needs children need to understand that this is not something that we should be applauding and encouraging. It is something we should be warning parents about as an indicator of serious problems in that home. It is a crooked line in a pattern that leads to a bad end. Every autistic teenager is not melting down attacking their parents 24/7 across the country. Broadcasting individual negative experiences in a one-sided manner and generalizing across the community because individual parents may have a personal wish to get their teenaged son out of their home is WRONG, disturbing, and causes harm to all of us. Address the actual issue. If as parents the Wells need to transition their son out of their care because they are unable to care for him, they need to contact the proper authorities or do what other parents have done. Parents have created individualized housing, care, and transitional services for adult children in places where those services are lacking. Had the Wells spent less time broadcasting and more time reading, perhaps they could have broadcast how they worked with their son to help him through the additional stressors of his teen years and gain him some respite and autonomy from them.

We need to begin looking for solutions to help our children rather than using the internet to make their lives all about ours. It is called being a parent. Let us all begin acting like responsible ones.


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In memory of all the murdered divergent children, with hope that speaking out helps end the killings







16 comments:

  1. You may well be wrong. Where is their community?
    Paul
    @Inaspectrum

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  2. Thank you, this has been playing on my mind for awhile, have also come across twitter accounts, where although no videos of the children, the constant description of how the child's behavior is effecting them and their life, how hard it is for them, with non of the joy, love or even the occasional 'win', those of us who care for our child with autism, know to be a huge part of our children's lives. If your child is melting down constantly, you are the problem, for not supplying them with the calm, safe routine, which allows them to feel safe, loved, and completely able to be them selves within the safe environment of home. If your child has this solid platform, and is sufficiently warned of what will be happening that day, then going out to places that may stress them, or even unexpected changes to the routine can be handled with much less stress for you and your child, even if the solution is to just remove yourselves from the situation and return to your sanctuary.

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    1. No, Mr. Reade, a child who is "melting down constantly" is not automatically a failure of parenting. Sometimes there are neurological issues that go beyond just making a child feel safe, secure and loved. Sometimes even the most loving, devoted, focused parents can find themselves out of resources, out of community and out of depth. It took almost a *decade* of having to prove to outsiders that we were 'good' parents in an overwhelming situation, of having to *videotape* meltdowns to prove to agencies that they were actually happening, of having reams and reams of documentation from medical professionals and behavioral experts before it was believed that the issue wasn't *us*, that our daughter really needed professional placement.

      A *decade* of attitudes like this, blaming us for what was happening to our family, that we were failures as a parents, we were not providing the right environment, that everything would be *fine* if we just learned all the right tricks. Do you have any idea what that *does* to people? To see a child you love out of control and hurting themselves and others on a daily basis, and being told it is your fault, no matter what you do? To try and reach out to other parents, to try and share common ground about the very real struggles, and be told you are selfish or narcissistic or *even causing the outbursts* for your own gain?? To have that constant outside judgement *on top of* dealing with everything else?

      The TRUTH is that caring for a loved one with high needs is HARD WORK. And sometimes it it heartbreaking, mentally straining, family eroding work that *NEEDS SUPPORTS*. We've got this figured out for elder care, that there is a very real physical and emotional cost to caregiving, and admiting you need someone else to take over isn't 'bad caregiving' or 'calling the person you're caring for a burden', it's being a realistic, healthy human being. But special needs parents? Hah. Our society has thrown the parents of special needs kids under the bus. We *don't* provide training for safe interaction with a violent child. We *don't* provide adequate respite hours. We *don't* give parents any reasonable, effective ways to ask for help. Instead we *blame* them for being crappy parents if things aren't going perfectly, and we lash out at them and tell them they don't love their child for not presenting their lives as always happy sunshine.

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  3. Very important post. It is something that immediately put me off when I came across Kelli Stapleton's bizarre blog, way before she attempted to kill her own child. This type of exhibitionism is unhinged and damaging, to the kids and to all autistics, and yes, certainly a red flag for more to come.. Parents. Making the autism of their kids about themselves.

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  4. Social media has created the worst of narcissism. It's times like this when I wonder how many autistic children have parents with Narcissistic Personality Disorder, or some other similar personality disorder. Then that question leads to: Autistic? Or just a result of being raised in such a household and the parents just slapped a label on the kid to feed their own narcissism. Horrible questions. But parents like the ones in this article fit the description of a personality disorder perfectly. They whine about how autistic their kid is, purposefully fail to get support, then whine that there is no support, and the sound they make when they whine sounds a lot like 'me me me me me', hmmm. And purposefully abusing their kid the point of meltdown, entirely just to film it and then post it on social media so all their friends can see it, if that isn't absolute narcissism I don't know what is.

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  5. 60% of the internet is PORN. If I had to choose between "modeling" and being embarrassed about my childhood, I'd break the internet in the buff. Sometimes you need to make hard choices (not talking about Hillary Clinton).

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  6. To the individual who wrote a reply to Mr. Reade's comment: My rules about posting commentary are rather simple. Please try again without expletives, personal attacks, and presumptions that people coming to comment here are all people on any side of an autism debate. Many people who are sharing this particular article are discussing parenting in general, privacy and civil rights of vulnerable populations in the internet age, and the lack of training in safe behavioral crisis management of these parents, one of whom apparently broadcast that he studied mixed martial arts moves in order to restrain his disabled son, something that is not appropriate and could harm the parent, the disabled son, or both.

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  7. This is very powerful - may I add a link to this on my website on this page? http://www.autistikids.com/devaluation--abusemurder.html

    Thank you for articulating this so clearly.

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  8. Thank you for your feedback. I very much appreciate you asking about linking. My only request is that you include a link (http://theautismwars.blogspot.com/) when reproducing any of the material in this blog.

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    1. Thank you - it's a direct link to your blog/this post, first article on the top of my page: www.autistikids.com/devaluation--abusemurder.html

      Thanks for all you do!

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  9. Isn't blogging about this issue exhibitionism as well?

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    1. I would argue that all blogging in and of itself is a variety of exhibitionism. Blogging is after all, a written series of opinions and personal views on the topics chosen. The question here is a question of right to privacy for individuals who cannot prevent the public disclosure of negative content about them and cannot ever delete that output from the web. It is also a question about noticing the signs of mental health crisis in parents who do this frequently and increasingly escalate the content to gain increasing attention from their followers.

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  10. Beautifully, beautifully said, as always, Kerima. I think I'm beginning to understand why I have certain triggers around this kind of thing: while I didn't grow up in the internet era, our mother talked to all her friends and family in pretty much the same ways about how horrible my sister and I were. Except that my sister wasn't horrible, so I guess I wasn't either, though I can't stop thinking of myself as having been horrible as a child. Even if we don't wind up dead, to have to grow up with parents (or even just one parent) who do this kind of thing can result in a lifetime of PTSD, anxiety, and other maladaptations. And that's from someone who's “sins” as a child *aren't* there for all the world still to see. I can't begin to imagine what those among this generation of kids are going through now, being effectively cyber-bullied by their own parents!

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    1. I hadn't quite thought of it that way before, but yes. If a child is being humiliated online by classmates or "friends" we call it Cyberbullying and understand that it's a cruel and harmful act. But if a parent is doing it...?

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  11. THIS. All of it. Thank you. Every time I go on youtube and see another video advertising "autistic meltdown," my stomach lurches. I haven't dared watch any of them. I've supported children and adults through meltdowns. There is no way I would EVER make those moments public, except to reference them with all identifying information removed in order to share helpful tips.

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  12. This is What Must Be Said. I imagine that if some of my more spectacular meltdowns had been made available for general public delection, I might not have made it to the ripe old age of 69. I probably wouldn't have wanted to, especially given the other life-ending issues that clinical depression can present.

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