Against The Autism Parent Feedback Loop of Woe

"Please try to remember that what they believe, as well as what they do and cause you to endure does not testify to your inferiority but to their inhumanity "

-James Baldwin 

The Fire Next Time  

My biracial nonverbal autistic son,  at about age 5,
expressing shock through the gestural language he created.
Image posted with the consent of subject ©Kerima Cevik

Stephen Prutsman posted an opinion piece to the Autism Society San Francisco Bay Area blog, and while browsing newsfeeds on social media I read it. The blog post disturbed me so much I posted a brief response in the comment section.

Mr. Prutsman headed his article with two images, a rainbow infinity symbol image he meant to represent the neurodiversity movement, and a disturbing photograph previously posted by his ASA chapter president alleging to show property damage to the upholstered seats of her car done by her autistic son.

Despite the reality that all content not spontaneously live streamed online is curated content, no one questioned the veracity of the statement that property damage to this car was inflicted by an autistic teen. That was something that bothered me. I wasn't there when the alleged incident took place. I am a stranger viewing this content and reading the hashtag of autism awareness beneath it. How do I know how the seats of this vehicle were damaged? I am presuming the honesty of a parent who shamelessly posts her own son's worst moments for the shock value. People can only ascertain character from words and deeds not from organization position and status. Status and power are not equal to ethics so, despite my presumption that the chapter president wouldn't post a claim that is untrue, it should still be pointed out that broadcasting anything to a public audience needs fact-checking. That means accusations about the behavior of another human being that cannot be verified should be viewed with skepticism when the accused individual is disabled such that they cannot defend themselves.  

 His article included a disturbing comparison that clumsily used African Americans and Sickle Cell Disorder. That was, in fact, a type of clueless racial microaggression. But the nature of Prutsman's blog post disturbed me so much I decided to address the inappropriate use of race and race-related illness as an extension of the use of Black suffering by affluent white people to gain an edge in debates having nothing to do with issues of race or African American people like myself elsewhere.

 I am guessing his goal was to lay out his thesis while defending his chapter president's right to display negative content about her disabled son on the "raising awareness" excuse of what they both define as the real or true manifestation of autism. 

It got me thinking about this large problem I once thought our community would work at solving. The problem is an autism parent emotional sink that is Internet-hosted, blog and social media fed, and toxic. 

My son, and Afro-Latino presenting male, with brown curly hair
wearing a black turtleneck sweater,
 holding his AAC device, an iPad equipped with
TouchChat AAC outdoors
green trees can be seen in the background.
Image posted with the consent of the subject. ©Kerima Cevik

It isn't because nonverbal autistics like my son are "acute" as Mr. Prutsman infers in his essay. It is my hypothesis that such an emotional sink happens when parents like Mr. Prutsman and his ASA chapter president begin losing the emotional and physical wherewithal to support their disabled family member's needs without help. Under these circumstances, when negative events happen, these parents retaliate by venting their clinical depression, sleep deprivation, frustration, and distress on the autistic offspring by posting their worst moments on social media. 

When I named this blog The Autism Wars I meant the wars for accommodation, inclusion, and representation for my son and his neurological peers. The wars for the presumption of his competence. From what I understood of his essay, Mr. Prutsman believes the autism community can be divided into two warring camps and his camp, camp b, is at war with the neurodiversity camp, camp a. 

I am not at war with Mr. Prutsman, his oversharing chapter president or the SFASA. If I am at war with anything, it is the culture where ableist attitudes like theirs are incubated. 

Is this group of parents within SFASA, led by its executives like Mr. Prutsman and its chapter president, caught up in what I call the autism parent feedback loop of woe? If so, as this pain/frustration feedback loop escalates unencumbered, is there a genuine risk of catastrophic outcomes? 

I have had these concerns since encountering parental rhetoric similar to parts of Mr. Prutsman's essay in blogs by others whose written displays of frustration and despair escalated to a deadly conclusion. That is why seeing such a post from an executive of an autism advocacy chapter so disturbed me.  He and his chapter president are part of the leadership of an advocacy organization supposedly existing to champion autistics like my son. What message is this sending to the disabled members of this chapter? I wonder if they realize how many autistic adults parent autistic chidlren? How many such parents will happen upon Prutsman's blog through social media browsing?

Let me take a minute to define how I think this feedback loop works:

1. Digital Exhibitionism: Autism parent group leaders who constantly overshare about their challenges with their kids, who make every disability-related challenge experienced by their offspring about them rather than the child, are using this as a coping mechanism for their own frustration and individual distress. They are typically overwhelmed (frustrated, sleep deprived, clinically depressed, etc) and as a result, may be making decisions with compromised executive function. 

2. The positive Feedback loop of Pain, Grief, Frustration: These de facto peer-moderated support groups for overwhelmed parents, if left unregulated, include lots of positive attention for expressing distress and pain. The more the lead parent posts, the louder that parent complains, the more attention they get.

3. If left unchecked, getting attention for being in pain becomes its own reward. The more that state of mind is rewarded, the more motivation there is to constantly express pain through digital exhibitionism and the publishing of more dramatic negative content.

4. This feedback loop does damage to a person's motivation to seek actual long-term help for the targeted disabled child or themselves because it's easier, more accessible, and more rewarding short term when people need immediate comfort after a distressing situation at the expense of one's autistic child. This is especially the case when the autistic target is nonverbal and multiply-disabled.

5. Any attempt to express concern for the disabled target of the negative content to a group in this state of mind will only strengthen its resolve because it encourages the group to make the problem about those they perceive as their attackers. It discourages introspection and allows further wallowing in frustrated angry pain. It promotes in-group solidarity because now there's a common enemy who they believe is persecuting them.

6. Without urgent, long-term, quality trauma-informed care for the parents triggering this cycle by generating and posting the curated, negative content such groups need to validate their anger/pain/frustration, people who are caught in this feedback loop risk eventually escalating to violence towards the targeted disabled family members and themselves. The fact that people who have done this are excused for their behavior and the violence is made to seem inevitable (and the fault of the target) further compounds the issue. 

The case of Isabelle Stapleton, the autistic young woman who was the target of her mother Kelli's escalating digital exhibitionism and eventually became the victim of her mother's attempt to murder her, is an example of how constant inappropriate validation for posting such negative content online can escalate and become dangerous to the disabled target. 

 Kelli Stapleton's constant postings of videos and images violating Isabelle's HIPAA rights and her blog about parenting Isabelle deliberately named The Status Woe acquired a large, cult-like following of parents. The tone of frustration and defiance at anyone expressing concern about posting negative content is similar in tone and approach to parts of Mr. Prutsman's written content.

 I believe groups and individuals with large public platforms who promote this culture of validating negative content targeting autistic offspring create an attitudinal shift that enables escalating risks of potential harm to the autistic youth targeted by such digital assaults. 

The plight of artificial intelligence exposed to negative or offensive social media content gives us a painful clue of what impact negative social media curating and consumption can have on people.  Norman the MIT AI  fed with Reddit data who now only thinks of murder and death, and Tay, Microsoft's chatbot who Twitter taught to be racist and misogynist,  show us that the culture of frustration, perpetual mourning, infantilization, hostile objectification of autistics with high support needs, and resentment that drives oversharing and defense of negative content in these autism parent groups may pervert the minds of exhausted, distressed parents. 

Our community has an abnormally high rate of filicide-suicides. I believe this phenomenon needs to be studied in the context of the influence of online groups caught in these feedback loops. 

Here is my other concern with his article.  

Mr. Prutsman's thesis in his essay was meant to explain his answering 'yes' to the question “Is it Time to Give Up on a Single Diagnostic Label for Autism?” citing the title of a questionable commentary by  Dr. Simon Baron-Cohen in Scientific American. 

Prutsman's essay argues for a new label as a kind of weaponized tool for him to wield as an autism dad. His demand for a new label for "acute" autism is not because the group diagnostic designation fails to encompass the entire autistic population, but because he views the label autism as being "tainted" by any group that disagrees with or disputes their parental group's rigid, negative, definition of autism. Prutsman defines severity and indeed autism itself by how he and parents like his chapter president view any negative behaviors rather than by proper diagnostic standards.

  He appears to blame the neurodiversity movement for what he calls 'tainting' of the autism label. Prutsman writes that this tainting happened by presenting autism as an identity, and overemphasis on positive attributes of being autistic by the neurodiversity movement.  

What is interesting about how he defines the neurodiversity philosophy is that it is not at all accurate. Unfortunately, the term neurodiversity has been conflated and the popularity of the book NeuroTribes confused rather than clarified the term. 

It is clear now that a great many autism parents don't understand the concept. Let me repeat one of the best quotes I have ever read about neurodiversity :

"Neurodiversity isn't about pretending that autism, other developmental disabilities and psychiatric disabilities are all sunshine and rainbows. It's about believing that we should be able to live our lives on our own terms and that our community should continue to exist, and doing whatever we can to make sure that happens."
- Shain M. Neumeier, Esq.

Mr. Prutsman othered anyone who might object to the targeting of autistic youth by the digital display his chapter president employed. He lumped them together into a stereotyped other by listing any commentary from those he did not know and dismissing it. Under the category of non-relevant commentators, he cited the neurodiversity movement or "group a," non-participating chapter members,  and online readers like me who were not local. This allowed him to define a collective enemy for his group to view as antagonists. 

 Prutsman implies that the enemy has won the autism label battle.  Now his group must have a new autism label for their kids, that restores complete power and control of the autism conversation and public policy dictatorship to them.

The sad reality of things is that parents like Mr. Prutsman and SFASA's chapter president who are affluent, white, and embedded in the feedback loop of woe are still the loudest and most heard voices in our community. Yet that massive platform drowning out the voices of the autistics they are supposedly speaking for doesn't seem to be enough.

Their resentment of everyone else, particularly autistic adults having agency in the future of what happens in their own lives harms my son by perpetuating a deep seeded ableism that negatively influences the public view of nonverbal high support need autistic youth. 

Autism parent feedback loops of pain and frustration don't provide any solutions to the behavioral challenges parents like Mr. Prutsman want constantly highlighted by generating and promoting negative curated content.

 The emotional opinion that professional diagnostic labels should be changed to disenfranchise one part of the community and allow control of autism public policy to rest completely in the hands of enclaves of parents too wrapped up in their own feedback loops of misery to  see the need to protect their own disabled offspring by not oversharing negative content is a risky proposition on his part. 

 He is not really asking for a new autism diagnostic label. He's asking for a legal or medical excuse to excise a massive part of the autism community so they can run the autism world. Without the consent or voices of their own autistic loved ones or parents like me.

And here is a sidenote. Yes, nonverbal humans can indicate consent if they are allowed to. Once competence is presumed and communication pathways actively sought for nonspeaking people, yes and no gestures, switches even eye blinks are possible.

 I don't need a new DSM label for my autistic son. Nor do I need a parent who is oblivious to what our son needs demanding one in the name of all high support needs parents and their offspring. What I need is for parents like Mr. Prutsman to grasp is that every stakeholder in our community has a right to equal representation whether he agrees with it or not. He can't live in a world segregated by those he accepts and those he doesn't. I'm Black. I don't need to remind us that my racial peers are still suffering from that idea.

 Abusing one's large platform to enable digital oversharing and abusive content generation is contrary to the principles of an autism advocacy chapter executive. But what can be done to reach such parents? I am afraid the nature of Internet interaction makes such an effort futile.

The question for us is what can be done to help break the toxic online culture that builds these enclaves of parents trapped in the autism parent feedback loop of woe? How can advocacy groups reach parents who are in this state? What happens when the loop exists within an advocacy organization's power base? 

Because something has to change here. This type of dysfunction is the root of community altercations and I suspect the root of eventual harm to autistic children and youth. We must seek solutions.

 This is unsustainable. 

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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 autism 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 surrounded by funeral flowers

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 tired of this pattern of self-serving exposure at the expense of one's 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 disabled offspring's 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 takeaway from this latest episode of digital exhibitionism at the expense of a disabled teen is all of us who are parents to neurodivergent children need to understand that this is not something that we should be applauding and encouraging. We should be warning parents about it 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