Teresa Elliot, “Deliverence”
A Dirty Game
Some autism families have been very lucky to find tremendous emotional support and even occasional respite within their family networks. Others swear this is the case while their affected children are very young but then find the support falling away once those children reach their teens and are no longer quite so small and cute. Some find themselves completely alone immediately following diagnosis.
However the defection plays out, for years I’ve been hearing the same story from countless autism parents—the crisis when they find themselves mysteriously alienated from the extended family fold, usually after coming under severe criticism for some aspect of their parenting.
The complaints and charges fueling the attacks might all be different, but the effect is the same: the stricken children at the center of the fracas are left even more isolated than they were already. I’m beginning to think that’s the whole point.
One parent I know suddenly disappeared from Facebook, explaining later in private that she couldn’t take how her extended family were using social media as a buffer to avoid having any contact with her disabled child. They would post birthday greetings on her Facebook wall in place of gifts, cards and, most importantly, visits. This parent’s son was too “severe” for family to deal with.
Another friend found herself cut out of a family elder’s will because, as he argued before the entire family (minus her and her affected son), she had fabricated her son’s autism to leech off the state. Never mind that her son’s diagnosis was well documented. Never mind if she barely took advantage of available public programs because, with all the defunding, the quality of certain services had become appalling and often came with scary and unwanted strings of state control. In her case, none of the remaining beneficiaries offered to share their cut or attempted to argue with the cruel elder, leaving this friend in a state of shock and, ironically, all the more in danger of being dependent on the state.
In her case, what gave bystanders the luxury of opining that her son never had autism were all the grueling effort and sacrifices she’d made along the way to get him to that level, to the point of nearly impoverishing herself. In that story, her son was too recovered for family to deal with.
There are so many other stories of parents being informed that their disabled children weren’t welcome at family celebrations or events that all the other children in the extended family and half the neighborhood attended. I’ve spoken to too many parents who were told, often by those near and dear, that they should institutionalize their affected children who “belong with their own kind” so that they “don’t hold back the others.”
Some unreflective types might bluntly admit that they can’t stand being around disabled child or adult family members, but most seem to opt for the more socially defensible tact of spinning blame from parenting practices. In these dramas, parents find themselves blamed for being overly protective or not doing enough to rein their children in; they’re criticized for their choice of school or lack of school in the case of homeschoolers. They’re criticized for letting their children eat junk food in an attempt to head off meltdowns and self injury or for feeding them an overly crunchy diet. They’re criticized for neglecting their children’s health conditions regardless of how helpless they are in getting proper care, or of spending too much time talking about and attending to health. They’re criticized for giving too much attention to earning a living to dig out from under the tombstone of “disability debt,” or of neglecting their work and finances to be with their disabled children.
But I think the tactics are just a cheap and easy way of feigning concern for a disabled child while simultaneously abandoning them. It’s a dirty game. The bystanders get their cake—or so they think: a life free of the “burden” of disability. And they eat it too—or so they think: they can try to convince themselves and those around them that they’re not simply shallow and apathetic.
It’s the same thing commitment-phobics do when they want out of an intimate relationship but don’t want to be seen as the one ending it: criticize or behave badly, prod the target into reacting, feign great offense at the target’s predictable response and run like hell.
I have wondered if this is the unspoken thing behind all those news photos of autistic kids sitting alone at their own parties, or families seeking help from nonprofits to ensure anyone shows up at their affected children’s birthdays, or children left out of celebrations that their entire grade attended, or photos of parties attended only by local cops because none of the children’s classmates RSVPed.
One father of a six year-old with autism wrote an understandably f-bomb-filled social media post that went viral about his son being left out of birthday celebrations by family friends:
My son Reilly has autism not fucking leprosy. He is six years old and my so called friends who have kids also have kids’ parties. Not ONE invite not fucking one. Think about that whilst you go and fuck yourselves; have you any idea how hurtful that is?
Everyone asks, “Where are their peers/schoolmates?” But we know, don’t we? Some communities collectively decide to open up their hearts to the disabled on principle. But most do not and you can’t force other children to befriend yours. So the other question that looms over these empty chairs and jiltings is “Where’s the rest of the family?”
The Excuse Market
If abandonment of the collateral of the autism epidemic mirrors the pharmaceutical industry’s astroturf deflection of accountability, I sense there’s a reason for it. I think what fuels it is a booming niche market for rationales. After living through nearly a decade of public and private drama regarding autism recovery and the vaccine controversy, I’ve come to realize that the whole function of astroturf trolls is to generate excuses to abandon a range of industrial collateral while simultaneously feigning sympathy.
Probably the most pathetic example of this is an article last year by former Murdoch blogger David Gorski who attempted to argue that the documentary Vaxxed, which exposes how the CDC buried evidence of a 340% increase in autism among black male infants who receive the MMR vaccine before 36 months, is actually a racist film that harms African Americans. Because, I guess, the truth hurts, but none more than those trying to bury it. Everyone else, as it turns out, is hurt by the deeds being covered up.
Gorski’s industrial promotion is just one of many examples of a particularly stealthy form of sponsored content, aka native advertising—the current, common news media practice of veiling industry PR as actual journalism which particularly illustrates what the late Pulitzer-winning journalist Murray Kempton said about editorial writers: “The people who come down from the hill after the battle to shoot the wounded.”
But it’s not just corrupted media doing the shooting. No matter how transparent the spin or conflicted the sources, I’m afraid the we-misplace-blame-because-we-care game may still be a winning formula for industry. This is because as the epidemic gallops on and more and more families are affected, the exploding number of people “awakening” to the existence of vaccine injury is somewhat modified by an increasing number of family bailers and underfunded institutions hungry for any excuse to ditch the stricken while simultaneously claiming moral high ground.
In other words, condemnations and justifications wouldn’t sell if there weren’t buyers among the public. It’s all grist for the mill for the turning of backs. In our increasingly alienated culture, offering any rationalization to defect from society’s most vulnerable is like waving a bottle of gin at a rehab meeting.
Corrupt regulators and industry executives may fear accountability and public validation of industrial victims because of the bottom line or loss of corporate reputations. But losses can be written off, the Supreme Court decreed vaccines “unavoidably unsafe” and removed the right to sue industry, white collar criminals rarely see jail time and political infamy tends to be brief in our capitalist zero-sum-game culture. Instead I suspect it’s the till-death-do-us-part commitment to the disabled that generates the most discomfort in autism family circles. The burning question may be who’s going to end up with responsibility for the disabled individual—to take them in or at least visit regularly, manage their healthcare and watch out for them— if anything happens to the parents.
Many of the autism parents I’ve seen going through this family baiting-and-bailing game are too stunned and heartbroken on behalf of their children to see through the farce. Parents may go on the defensive about the parenting choices and lifestyles that have come under criticism; they may wonder what terrible thing they’d done to cause rejection. They may feel baffled and ashamed for somehow unknowingly contributing to circumstances in which their children lose contact with family members. They may get angry. But when others are going into their self-exculpatory song and dance, everything you say and do can and will be used against you and retooled as yet more excuses to avoid your kids.
Or, at the very least, defectors, though otherwise loving and empathetic when it doesn’t threaten their sense of reality, are those for whom love is the lesser driving force than fear and avoidance. In that sense, dealing with family denial is almost identical to dealing with family addiction, except the addiction is to emotional comfort, to a sense of conforming with the dominant paradigm, to appearances and avoiding inconvenience. As such, it might require tough love interventions. We might stop trying to explain and let them figure it out themselves. Walk away. If love is their greatest driving force, they will make an effort. If love is the lesser force, they won’t. It’s out of our weary hands.
In the end I have no real wisdom on how to handle these betrayals. What’s clear is that disability evokes a lot of family shame, though the shame itself is shameful. Another difficulty in writing about autism family betrayals—and probably another reason why there aren’t more first-person narratives about it— is the shame of admitting we’re related to people who would abandon or betray disabled family members. Like what if this apparent lack of empathy among many of the extended families of vaccine-injured individuals is seen by the wider world as genetic?
But moral compasses stutter in proximity to stress, as Primo Levi argued. The epidemic is causing cultural stress.
In The Drowned and the Saved, Levi also quoted another death camp survivor who stated that 10% of people are always merciful, 10% are always cruel and the remaining 80% can go either way. Idle or blaming bystanderism is just one of those “ways.” It’s cultural and a problem of the human condition. I see all the viral spin on traits of “narcissistic personality disorder” and it might be tempting to armchair-diagnose everyone who fails and bails, frames and victim blames, or triangulates and gaslights to convince onlookers that they, the bailers, are not in the wrong for defecting. But as easy as it is to use all this pop-psyche terminology when trying to process bewildering social catastrophes, it makes me slightly queasy because the criteria for “NPD” just sounds like typical brittle human behavior to me. Levi catalogued this brittleness long before the autism epidemic.
I’m sure others have said this many times before, but it’s as if the epidemic is making the world into a cartoon of autism: “Lacks empathy; inability to read emotions, social cues or context; treats people like furniture.” Though this can’t be generalized to individuals with autism who are more likely than typical peers to be victims of bullying and assault and statistically less likely to do harm to others, it’s spot on about how many treat affected individuals.
It’s also spot on regarding how autism parents are treated by their communities or extended clans, though this brings up another reason why many avoid talking about it—not out of shame exactly, but due to the risk of further shaming. The admission that you or your child are treated badly, especially by your own kin, can be a cue for other bystanders to assume you’re accustomed to eating shit and they should serve up more where that came from.
But my husband and I have become snobs about ethics. A friend and activist for another cause once said something so profound that I wrote it down and have kept it close to my heart at all times. She said, “The only glamour is harmlessness.” She didn’t mean harmlessness as in “weak” or “ineffectual.” She meant those who don’t do harm to the vulnerable. In her eyes, people like this have the greatest status—they’re the A-list, the corps d’elite, the crème de la crème. She deliberately overwrote the social hierarchy to place lack of humanity at the bottom.
This isn’t to romanticize all autism parents. Not all are humane. Autism isn’t selective and doesn’t only strike devoted families. As unfair as it is for the public to stereotype average, struggling autism parents based on news stories of families who keep affected kids in cages or even kill them, these horrors have happened. There’s always professional vaccine defender Alison Singer and her infamous confession of wanting to drive her affected daughter off a bridge.
It’s especially shameful when parents are ashamed of their own children. For instance, all the accomplishments of the late, great playwright Arthur Miller— social justice warrior and author of Death of a Salesman and The Crucible— have been cast under the shadow that Miller denied the existence of a son with Down syndrome for forty years. One literary historian noted that Miller didn’t write much after he institutionalized his son, and that the story of Miller’s son may have been the greatest play that Miller never wrote. Miller was undone by misplaced shame.
The historical excuse for Miller’s behavior might be that, back then, one hid one’s family “defects.” But in day to day modern life, those social rules still stand. The defective are defected from and we’re not supposed to talk about it.
One of the dual complaints/alibis my husband and I heard from a few who failed our children was that we talked too much about the children’s complex health issues and treatments. Never mind that we often did it in response to someone looking cross-eyed at our attempts to keep our kids from eating or breathing or touching this or that or another thing which could trigger behaviors that would leave us with that much more to explain. It’s a thumb trap.
One clear sign that you’re in a marginalized class is that nothing clears a room faster or draws sharper judgment than trying to explain extenuating circumstances. This is partly because genuine reasons forfeit rationalizations. One clear sign that a bystander may be hunting for alibis is that they don’t allow their targets to have any.
In our case, the criticism was based on the idea that naturopathic medical approach of organic, gluten free diet and supplements wasn’t healthy or necessary, so the criticism rode high on mainstream industrial spin. Of course the criticism was veiled in concern for our kids, which naturally forfeited any argument that we could be doing what we do—or talking about it as we have— out of concern for our kids.
It could all be taken as backhanded recognition that everything we’d done to get the kids from point A to point B had worked. But some bystanders expressed—through eye rolls, abrupt subject changes, resentful silences and mostly just not showing up—that they didn’t want to hear how the children got from A to B and what it took to keep them at point B or, if the stars and a lot of helping hands align, get them out of the woods to point C.
Among the many things that vaccine injury families are accused of, perseverating on health, treatments and vaccine injury politics is high up on the bystander complaint list. Autism parents are always making jokes about it with hashtags like #PITA (Pain In The Ass Autism Parent), though I’m not sure if anyone’s really figured out why so many of us are like this.
In the vaccine injury world, one of the reasons parents are so consumed has to be that the struggle to ward off the next regression never ends, even for ostensibly recovered children. It’s always on parents’ minds because risks abound and it’s excruciatingly painful watching a child lose ground that you walked through fire to help them gain.
There’s also a sort of existential crisis that’s presented when, for no reason other than greed and corruption or excessive worship of technology, your children are maimed or killed. In the face of such cataclysms, I think a lot of us feel we’re in danger of losing any sense that life has meaning. In that case, sparing someone else’s child a similar fate can rebuild a sense of meaning and hope and act as a way to honor the fallen.
Another reason that parents hyperfocus is obviously political consensus-building. Polls have shown that all the talking and publishing and filmmaking, etc., have been at least somewhat effective: 89% of the public lists vaccine safety as a number one health priority, over half of all Americans suspect vaccines cause autism, and industry is clearly becoming terrified.
But all the talking is not a game to score points. It’s to change a lethal paradigm. Because the average age of death for individuals with autism and seizures is 36-39.
The chairs we worry most about being left empty are our children’s.
Adriana Gamondes is a contributing editor to Age of Autism and one of the blog’s social media administrators