Teresa Elliot, “Deliverence”
The Burning Question
The study reporting the massively elevated rate of early death among individuals with autism came out over a year ago. Even less reassuring is that the study was done in a country—Sweden—that has far better healthcare and disability systems than the US as well as a voluntary vaccine program and lower rate of autism.
But as cruel as the news was, it was grimly validating of all the measures many families have taken to keep affected children alive, often in the face of bitter criticism that these concerns are unfounded and the measures unnecessary. All the same, it’s something no one wants to be right about.
In the report, individuals with autism, especially “high functioning,” were found to commit suicide at much higher rates than typical peers, and children with autism are 28 times more prone to suicidal ideation. Accidents were also a leading cause of early death. But the reigning cause of early mortality in autism is seizures, which cut lifespan by thirty years on average.
Researchers note that individuals with autism are also up to 40 times more prone to seizure disorders than the general population, which must be one of the factors that has spiked the statistical rate of epilepsy to the current 1 in 26 in the U.S., not the older figure of 1 in 100 that was reported by study authors. Authors further note that many individuals with autism develop seizures in their teens and twenties in a late-onset form that tends to be far deadlier than epilepsy in typical individuals for reasons that researchers don’t (or won’t) understand.
But that’s something else parents know, isn’t it? Though it’s impossible to foresee every cause, autism parents tend to develop a radar for many of the triggers of neurological events—the toxic and allergic exposures, the depleted nutritional status, the infections and stressors— that inch children closer to the abyss of full-blown seizure disorders. This is because immediate families live with the immediate fallout.
After the study came out, my husband and I had an epiphany. We realized what many autism parents are doing when we issue “too much information” on health concerns, special diets, treatments, institutional abuse, wandering deaths and seizure risks is that we’re asking an important question of those in our family circles. We’re asking who among our clans would not only watch out for injured children but also who might do what it takes to keep those children out of institutions and alive for more than a few years in the case we were taken out of the picture through disability or death. Parents may also be asking who among their families will be raising the next generations to actually give a damn about their disabled relatives once those in the older generation die or become too infirm to manage.
“Not I” said the little bystander to disaster. That’s what every eye-roll, abrupt subject change, behind-the-back criticism, angry stare and distancing accusation seem to be saying. But considering the all-too-common horrors and health risks that individuals with autism face, is it any wonder that their parents keep repeating the question? “No” is simply too horrifying an answer to accept.
Even when family members say “Yes,” the thought that those who accept the responsibility would be isolated in their efforts and unsupported by the rest is worrisome and guilt-inducing. Every affected family needs as unified a front as is humanly possible.
Yet some pretend they don’t understand the question. It’s madness. What is there to understand? Our kids are dropping like flies.
But those seizure disorders claiming so many lives are not inevitable and can be staved off and sometimes prevented from taking hold. There are no guarantees that prevention will work and those whose children succumb are not to be blamed, but we’re damned if we don’t try. Furthermore, lethal institutional abuse is not a given and can be stopped. Deadly wandering may take a village to prevent but can be prevented. Suicide is also not a given, and the growing number of adverse events deaths among the disabled from the over-prescription of sedatives and antidepressants never had to happen to begin with. But what it takes to stave and stop and prevent might be more than some are willing to commit.
The hesitation of others to commit to our children is understandable considering the toll of all the stress, which doesn’t merely make moral compasses stutter but can stop hearts and fuel cancer. Autism parents are dropping like flies as well. One veteran autism advocacy organization founder noted sadly that he was the last surviving original board member of one group while those from another organization he’d founded were starting to die off.
But to the extent that deadly stress on caretakers and deadly consequences for affected individuals can be reduced by families banding together, parents may be testing the family waters to see who will step up “just in case” again and again, sometimes in the face of obvious unspoken and spoken cues that the discussion isn’t welcome.
If anyone thought they were alone among autism families facing rejection and defection from their flesh and blood, read the comments to this series. To be honest, that’s why I wrote it. I thought reader comments might serve as a stand-in for those nonexistent studies on “the effects of man-made disease on family unity in the industrial age,” etc.
The comments are also simultaneously validating and grim. It’s haunting to realize how many parents are encountering indifference as we beg for others to commit themselves to the welfare of our children “just in case.” Parents create living wills, invest in disability trusts, and work multiple jobs and far past retirement to prepare for the day they’ll no longer be around. But I can’t help sensing that many among us are dying a little faster from the fear that no one else will be around either, or that typical siblings of disabled individuals will have no support as supporters.
Out of a sense of duty, some might take charge of disabled extended family members if the responsibility falls to them. But you can picture how badly things would turn out of these individuals never took the time to learn the particulars about health risks and remedies—such as how to respond to seizure auras to stop the cycle or the development of full blown grand mals, how to put two and two together between recent iffy food or chemical exposure and seemingly unrelated symptoms, what supplements or foods improve sleep or reduce meltdowns in order to avoid the use of life-shortening medications, or how to determine if an incommunicative disabled individual is being institutionally bullied or abused.
Imagine that parents Mr. and Mrs. X die in a car crash on their way back from an autism conference or IEP meeting, leaving their surviving extended families to draw straws over who will take in Johnny X, the X’s only child— a seizure-free, drug-free, physically thriving 11 year old with autism who’s gaining on recovery after a decade of special diet, detox, clean environments, bully-free education, etc. Johnny, in fact, seems fairly easy to raise, but only as long as the checklist of do’s and don’ts is heeded. But no one in the extended family was really paying attention to the X’s pleas that others learn the formula for Johnny’s miraculous improvement.
Here’s an excerpt from my head film:
“Is this diet really necessary? These supplements cost a fortune and Forbes says it’s all quackery. I know the Xes, God rest their souls, will roll in their graves, but what if we took Johnny off this protocol for a spell to see what happens?”
“Johnny had another breakthrough seizure at the store, oh dear. He’s gained so much weight from the new meds that I had to call an ambulance to get help lifting him. But he still broke my glasses and scared our kids. Do you think we should look into that residential home again?”
“The nurse at the Happy Acres said the knuckle-shaped bruises on Johnny’s back came from when he levitated in the air and threw himself against the closed fist of another resident over and over again. Oh that Johnny, always paranormally transvecting! We missed last Saturday’s visit. Should we make the drive next week or schedule the oil change?”
“Oh dear, Johnny’s dead! I never saw that coming! Everything happens for a reason…”
Sometimes things happen because people suck. Why sugarcoat a fable when reality is often worse? The scenario isn’t even extreme pessimism since many orphaned disabled individuals might not get takers within their extended families in the first place.
When an autism parent says “I can never die,” it may be a reference to lack of faith in their own kin or to the fact they don’t have any. In any event, it’s a phrase that’s heard too often in the autism world.
Veterans and Casualties
If everything continues as it has been in our society, the empathy-dissolving spin will continue to tear families further apart as more and more children are diagnosed with chronic and debilitating conditions. Personally I think the answer is political. Some might call it long term social engineering. For six years I’ve been writing about how Vietnam created the program of "Peace Villages" for victims of Agent Orange— villages which receive state support to take in a certain number of disabled who will be cared for and nurtured by select communities for the rest of their lives.
I suspect it's the demystification of the injuries and terrible birth defects left in the wake of Agent Orange— the consensus that the victims were, in essence, wounded veterans of war— that appears to promote greater compassion in this instance than humanity usually shows the disabled. At the very least, official recognition can strip standoffish bystanders of their paper-thin rationales for abandoning the collateral.
The U.S. is still avoiding that responsibility and compensation for dumping 50,000 tons of the herbicide on South Vietnam in the 70’s— if that’s any hint of how long it might take to gain official recognition of the vaccine injury epidemic and its chemically injured veterans of the war against disease. Vietnam finally had to mop up the mess caused by others. But until environmental cause of the majority of autism cases is adopted as the official view, there will be no Peace Villages except the ones we build ourselves.
Yes, there are still excellent residential homes for the disabled. But the “excellent” slots quickly fill as the floodwaters of the epidemic rise, and those families without means will be without hope while an era of lethal snake pit institutions rises again.
In the meantime, expect tight purse strings and tempered compassion, more stories of abusive restraint and seclusion in schools and group homes, and more deaths from same. Expect more wandering deaths, more autism related seizure deaths, more bully-induced suicides and more deaths from mainstream drugs. And though most of us recoil from these stories and refuse to condone them, it’s just a fact that there will be more murder-suicides by end-of-their-rope or autism parents whose children have aged out, or by parents who gave into the pharmaceutical siren call and medicated themselves into madness.
The epidemic is the valley of death. Are some of us “overprotective” of our children on the way? Or are we simply failing to protect bystanders from the harsh realities of our children’s lives as we plead for safe harbor?
Because it’s not just industry attack dogs who act as the agents of silence, or policy makers who throw affected individuals under the bus. There are people in our own communities and families who are too ready to adopt any rationalization the media or official channels feed them in order to bail on the casualties of the epidemic.
This is simply who we have to be to keep our kids alive. We can never die and we can never lower the bar while we fight on several fronts, both political and personal. The war is everywhere. We want to come home from it. But where would that be?
Adriana Gamondes is a Contributing Editor to Age of Autism and one of the blog’s social media administrators.