By Adriana Gamondes
The last words Age of Autism editor and founder Dan Olmsted communicated to me shortly before he died were on January 11th, 2017. We were discussing a few editing issues with the following series. What he said was “Don’t rush the fine wine.”
Dan was kind. At the time I resisted making a joke about the series being a “fine whine” because Dan had a sense of humor, but not when it came to grim and bleak topics. The series is about abandonment of the disabled, so if it’s fine wine, it’s a bitter vintage but a subject Dan fundamentally understood, which is something I understood about Dan. His interest wasn’t in well-covered stories but in neglected, silenced, untellable stories. It’s why, as a journalist, he took on an issue he was not personally obliged to because too often those more obliged will not.
I’m convinced this contrast is one of the reasons for the high divorce rate among autism parents. In comparison to the strong bonds forged in the midst of shared conflict or the respect that’s inspired for those who walk the walk, less ride-or-die partners will seem that much more disappointing as well as less ride-or-die friends or family.
For better or worse, autism is a filter of the finest mesh. Even if a marriage survives the strain, other relationships may not. That’s been my family’s experience. My husband and I just had our 20th anniversary but there were a few empty chairs at the celebration.
There was a reason for it. Around Easter, 2016, we learned that our parenting had come under attack from a few members of the extended family circle. Yes, the controversy was about autism. The attack was off the wall and spectacularly unfair, the drama spread, sides squared off, the opposition’s enablers leapt in and our defenders landed in the line of fire. People who’d known each other most or all of their lives stopped speaking. When the smoke cleared, we were looking at real wreckage.
The clichéd war terminology is deliberate. The holidays. Obligatory family interactions. Autism. Bullshit— that thing that pushes many affected families over the brink and ends up in studies that conclude autism parents have stress levels equivalent to combat soldiers.
The stress of disability isn’t confined to immediate family either. It radiates. In The Drown and the Saved, Holocaust survivor, political historian and scientist Primo Levi compared extreme stress to the North Pole, proximity to which can cause moral compasses to stutter. He added that this is particularly true in individuals who lack any solid political or philosophical armature.
My husband and I aren’t unsympathetic to the fact that the issue of autism, particularly if you add the ballast of vaccine injury to it, is an unfair test of character to nearly everyone who encounters it. Hardly anyone starts out with sufficient political armature to grasp what is easily one of the biggest controversies of the century and poorly understood. It’s the howling wilderness—a moral wilderness— and there’s no map except the ones we create.
Over the years we’ve realized that the mistake we made was in thinking that a lack of information and understanding about vaccine injury was the problem. But while some bailed in a hail of muttered vaccine defenses, other defectors benefited from our children’s tragedies and ceased vaccinating themselves or their children. In both situations the same individuals might be perfectly accepting of families who resisted vaccination, though only as long as no one in that family had been stricken.
It’s clear to us now that while some understand everything after only a few words, in the case of others, we can draw all the maps and guides we want but if they won’t follow us down that road, they’ll be lost to us. In the disability world, it’s quite easy to end up alone, save, of course, for the millions of other fellow travelers for whom alienation from family will just become another potential grafting point. Autism is rapidly becoming a separate culture.
But there’s hardly anything more painful than that separation, is there? At first it’s like symbolic death. The need for human beings to have the sense of belonging to some clan or tribe is so powerful that people who never knew their families will long for what they never knew. Others will give up indispensible parts of themselves to fit and, no matter how wretched it makes them, cling to the fold.
But for some of us, the breaking point comes with rejection of disabled children or when we, as parents, are punished for being who we have to be to keep our kids alive. Because what’s the difference? Whether someone pushes your child under the bus or pushes you while you’re carrying your child, your child will end up under the wheels all the same.
These social betrayals happen to every stripe of autism family, from those who believe it was caused by vaccines or other environment toxins to those who vehemently don’t. It happens to families who try to cure their children of the condition or those who “embrace autism as a gift.”
Parents can embrace all they want; but their aunts, uncles, siblings, nieces, nephews, third cousins twice removed, old friends of the clan, grandma, etc., might not, no matter how much parents try to paint up their child as some kind of savant Honey Boo Boo or make autism seem “fun.” Because it isn’t. It’s a baffling, cruel condition that happens to meaningful human beings. The disabled individual, no matter how high or low “functioning,” is always worthy and needs to be surrounded by faith in their capacity to feel and sense the love—or lack thereof—of those around them.
But autism is also where affected families and their children get to see the ass-end of too many people in their midst. That’s the end that’s visible when people walk away in any case.
Our Easter family rift was the kind of thing most parents facing a recent diagnosis hope beyond hope to one day endure: that moment when their children hit a stage of such significant recovery from autism that bystanders begin to argue over whether the children in question ever genuinely had it. It’s hard to complain because it’s literally a dream come true. But finding ourselves under attack for it caused such irreconcilable emotions that my husband and I had to coin a phrase for the occasion, a combination of “fuck you” and “hallelujah”:
Because whatever condition our children had or have, when the dust settled, our kids are the ones with the most to lose. Autism is a war on all fronts, including those closest to home. Wars create refugees.
Psychogenic Penis Babies, Bad Genes and Bitter Litanies
This series has taken more than a year to write because I tend to resist getting into the specifics about family dramas for a few reasons. First, there’s the minor editing problem of specifying family relationships, which makes everything sound like the reveal scene from a soap opera: “It was that moment when the wayward third cousin twice removed of my stepbrother’s ex-wife’s illegitimate triplets arrived that our destiny was fulfilled…” So it’s easier to generalize.
Another problem is laundry and airing personal grievances publicly. It’s a poison pill. Family rifts are heartbreaking, particularly when children or confused elders are caught in the middle. The avoidance of fallout is why the subject of family abandonment— though it’s repeatedly mentioned in blogs, books and articles on autism— is rarely discussed in first-person detail. It’s to protect the innocent. There are people in our family who are entirely innocent and loving and we’d like to protect them as well, though the fact that the offenders in our situation had already attempted to drag others into the mix made further fallout unavoidable. As much as some expect to be forgiven for every arrow they let fly, most can never forgive being called out for it. But the arrows that strike our kids have a way of turning into pens.
And finally, I’ve resisted writing about family dramas since autism families are always on the hot seat. We get tired of the song and dance of deflecting mischaracterizations of ourselves and our children. The act of self defense lays a trap of issuing “too much information.” But trying to condense leads to bad grammar, particularly use of the dreaded semicolon to punctuate bitter-sounding inventories cataloging each accusation and each reason why it wasn’t so (damnit), then lists of mitigating circumstances, clarifications, etc., etc.
But let’s face it—now that I’ve waded halfway in, I can’t leave the list of charges or litany of defenses to the imagination precisely because the public imagination runs particularly dark when it comes to autism families. So semicolons it is.
Even as autism rates have doubled every few years to the current 1 in 36, we’re still technically in a minority of those facing the same specific challenges. In the wider world outside the far flung community of those who “get it,” the mere fact of having affected children triggers automatic assumptions that we may have done something seriously wrong to warrant criticism, whether the list of accusations involve bad genes, bad lifestyle or Neo-Freudian suspicions that autism mothers cause neurological disability in their children via murderous psychosexual brain Voodoo. Adding fuel to the fire, there’s an endless loop of industrial media spin threatening families who fail to keep vaccinating already vaccine-injured children with prison or loss of custody, citing “medical abuse”; or mocking parents whose children have lethal allergies; framing autism parents as general genetic lepers fat (or thin) moms and old (or young) dads, or as drug-addicted, alcoholic, mentally ill, and sociopathically inclined.
Or “fabricating symptoms for attention.“ The Easter accusation was that we’re “overprotective” and depriving our twins, who have autism, of a normal life because of all the things we do to recover them from autism when they don’t, it was argued, have “real” autism. Maybe just “a touch” which is largely caused by failing to provide our children with sufficient peer contact within formal institutional education due to the years the twins had been homeschooled.
Our reaction to the charge wasn’t a matter of being unable to take criticism about parenting. At one point I actually approached friends and fellow advocates to see if they had any scathing reviews of how we’re raising our children. Naturally I only approached friends and comrades who are in any position to judge, meaning those who’ve endured or accomplished what we have or more—for example, more completely recovering one or more children; or raising three or more children with vaccine injuries instead of just two; or recovering their children from deadly seizures and risking prison for using medical cannabis which we have not yet had to do; or losing a child to vaccine injury and yet remaining active in fighting for vaccine safety; or dedicating an entire summer camp and nature program for children of autism while recovering their own children; or simultaneously getting a masters in Applied Behavioral Analysis while providing pro-bono special education law services and recovering a son from seizures; or any single, financially struggling or disabled parent who so much as attempted any of the above, etc. Though none of the friends and comrades listed above seemed to have any major criticism of what we’re doing— other than possibly suggesting one probiotic over another or having a different view of Skinner, etc.
Meanwhile, if one thing could be said about our extended family hecklers, it’s that none have any experience with autism. This is partly because our children were the first in any generation to be stricken with it. But we don’t recall certain critics or their enablers choosing to have any real contact with the disabled community, much less inviting disabled friends to various celebrations or events. In fact, none had ever had neurologically disabled friends. Yet the family critics feel sure that institutional settings encourage a kind of social inclusion that they, the critics, never personally foster. It could sound as if these individuals were assuaging guilt for shunning the disabled around them by convincing themselves that every community harbors empathic wonderlands that lovingly pick up their slack.
Never mind (another bitter list) the high suicide rate among disabled students and the fact that the Lord of the Flies bullying dynamics that exist in many schools victimize 5-fold more autistic students than typical. Never mind that our kids made the steepest progress after they were taken out of two terrible schools and that any friends they ever made were outside those settings. Disregard the fact that our son left the last school unable to read and that both kids now read novels the size of their heads, sight-read Beethoven, or that the reason for withdrawal from formal education was repeat physical abuse by school staff. Never mind that the twins are currently in class with peers and are happier and healthier every year.
These realities made no difference to the critics other than feeding their core misconception that our children had never been on the spectrum, much less severely so. One demanded “proof” that the children had even been formally diagnosed.
Just to be clear, there is no controversy. Our kids were repeatedly diagnosed with severe or low functioning autism by heads of major university departments and every institution that enrolled them up to 2012. The entire Massachusetts State House knew it. We were asked to bring our children to a state hearing in 2010 as a way of saying “this is autism.” Apparently it was too much autism for a senate hearing on autism. Our son had to be escorted out for disrupting the proceedings with wordless groaning and shrieks.
Nevertheless, one family critic who argued that our children were never that seriously afflicted attempted to bridge the holes in her own logic by insinuating if the children ever had issues, we must have caused them.
For a bit of history, part of our extended family grew up in a culture steeped in Lacanism—the view of the late French Neo-Freudian psychoanalyst Jacques Lacan that autism is caused by mothers who mistake their babies for the penises they wish they had. Lacan insisted that fathers also bear responsibility for being too weak and mesmerized by femininity to see the danger in women’s lower animal nature to stop it— by force and removal of children if necessary. Because, according to Lacan, men build culture and women destroy it… by transmutating babies into penises. Or something.
It’s a bit hard to follow. I’m imagining generations of sulking shrinks furious that their exhausted postpartum wives are spending more time with the new baby than having sex and fetching slippers. “Zounds! She has forsaken my penis and replaced it with a baby! Anarchy!”
The curious thing is our psychoanalytic family critic could never come up with evidence for the psychogenic phallocentric penis-baby argument worse than the following vignette, which I think was intended to convey the scandalous depths of our damaging parental conduct—conduct presumably bad enough to cause children to stop talking or sleeping, flap their hands, line up objects, scream all night and develop abnormal lab results. But if someone did a film reenactment of the event in question, it would probably end up a very popular PSA on how to ward off deadly autism elopement, divert meltdowns and avoid sedation.
As the story goes, there was this time when we were preparing to take the kids on a walk to the beach and it took us (gasp) literally 40 minutes to get out the door because of all the gear and food and drinks and blankets we packed while our son stood in the entryway banging on the dead-bolted door and wailing one of the only words he could utter in that period: “Go! Go!”
The teller of this story teared up at that part, grieved by the utter tragedy of the boy who wanted to go while his parents packed a bunch of useless crap out of their own neurosis. Nevertheless the tearful bystander was dry eyed about the bit where our twins lost skills and became desperately ill after 9 vaccine doses in one doctor’s visit. She’s dry eyed over the time the children pitched public fits and wrestled away from us for no discernable reason, one time racing straight into traffic, another time straight into the freezing ocean. Or the time a double screaming meltdown drew a film crew of strident old ladies with camera phones and 911 on speed dial. She doesn’t shed a tear over the twins’ rejection from school after school and the physical abuse by staff they endured in two because, if the catalog of woes ever happened at all, all were apparently caused by negative thinking.
Or phallic delusions. Or mutant genes. Or whatever. It doesn’t matter. The accusations are arbitrary though the subtext may be fixed. Ultimately we’ve found very little difference in the conduct of defectors who blame the epidemic on parental neurosis or on tainted DNA. Either theory can be useful in quarantining the blame for disability on affected families if one happened to be in the market for excuses to escape. It’s all how one looks at it. Or doesn’t because one was noticeably absent for the worst of it.
So, also for the record, here is another list of mitigating facts: The deadbolts and gates were installed because of an incident about 9 years ago when our son—in the time it took to peel an apple— had managed to silently squeeze out of a chained, solid wood door by ramming his encephalitic head through the tiny gap. He was found blocks away, heading to the local duck pond and to being another statistic. The toys we took on walks were to distract when the kids began hankering for things in shop windows on the build-up to inevitable meltdowns. The allergen-free organic snacks, etc., were to make sure the coming fits weren’t fueled by hunger, thirst or allergic reactions, because those types could last several hours, involve violent writhing, frothing and eye-rolling of the kind that tended to attract amateur film crews and put parents’ backs out for a couple weeks. That’s where the double stroller came in. The natural baby wipes were to maintain germ-free hands since any random minor infection, if it didn’t lead to new tics and night terrors on the build-up towards looming seizure disorders, could lead to a visit to the only grease monkey pediatrician who took our insurance at the time and to more intense questioning about why we’d suddenly stopped vaccinating or why we were depriving our children of major tranquilizers, antidepressants, Ritalin and synthetic opiates. The blankets were to offset hypothermia if the children ever made it to the water again and could double to mop up vomit or disguise an IBS diaper explosion. The thermoses of coffee were to keep us upright after sleeping no more than 30 hours a week for four years without any offers of respite from Neo-Freudians. And finally, everyone’s relatively stain-free outerwear was meant to make us less prosecutable by public opinion if we ended up on the six o’clock news post-elopement or post-public-meltdown, or if the state agreed with the grease monkey that we were negligent in not sedating our kids to Kingdom Come.
It happens all the time. Just another day at the vaccine-injury races. I don’t remember the particular incident because we must have packed that gear a thousand times back when the kids were still in the worst throes, although 40 minutes actually sounds like record time to me to prepare all the anti-bolting, anti-meltdown, anti-GI-disaster, anti-prosecution gear. It usually took about an hour and a half, so we were probably rushing it due to the presence of someone radiating silent judgment at us while we stubbornly prepared, as we did every day, to bring our children out into a world that radiated the same.
Adriana Gamondes is a contributing editor to Age of Autism and one of the blog’s social media administrators.