Merry Christmas to Everyone in the Age of Autism Family
"Constant Race To Keep Ahead of Him," Tot with Autism Drowns

Part 4 Grist For the Mill For the Turning of Backs: When Family Defects from the Defective

                                                 Deliverance painting
                                                                                                       Teresa Elliot, “Deliverence”

By Adriana Gamondes

Read part 3 here

Read part 2 here

Read part 1 here

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.

Comments

Barry

Not in itself bad advice but the problem would not arise if we weren’t trying to stimulate multiple kinds of inflammation. No doubt Tylenol has a place in the narrative but people were administering it to sick infants long before before the great rise in autism.
**********

Yes, they were administering it to children before 1986, when the National Childhood Vaccine Injury Act was signed into law.

But the vaccine/toxin load has literally exploded since then. And along with it, the number of required doctors visits where the standard scripted advice is to administer Tylenol at the earliest sign of a fever.

Something else to consider, is that breastfeeding saw a major return to north America in the late 80's / early 90's. And with acetaminophen being marketed as a '...good choice for analgesia, and fever reduction in nursing mothers ... ' (https://www.drugs.com/breastfeeding/acetaminophen.html), many nursing mothers were likely regular consumers of Tylenol themselves. Which would surely have put those infants much closer to the trigger point that Dr Lane is referring to.

I'm not a doctor, so all I can offer here is an opinion. And to be clear, I do believe that vaccines are the root cause of every single case of autism.

But if the doctor in the following video is the same Dr. Lane, I think his causal theory for why some children develop autism from vaccines, while others do not, deserves consideration well beyond just good advice

https://www.youtube.com/watch?v=YmZzg2nA8LA

Jonathan Rose

Well, Mr. Chopin, you've proven Adriana's point, haven't you? Confronted with the suffering inflicted by the autism epidemic, some people become profoundly callous, don't want to hear about, pretend it isn't happening, and deeply resent anyone who confronts them with reality. It's a form of moral corruption that rots the soul. I assume you don't sign your real name because you're ashamed to do so.

Benedetta

Kerry;
Tylenol might not cause vaccine injuries but we might have traded aspirin ( a sure enought inflammation controller) for Tylenol.

Benedetta

How many of us will care for our own parents? Those that loved and raised us when we were young? Care for them, or put them in a nursing home.

It is the same. There is no difference.

We are just too busy, it's too hard, it is too scary (and fear is huge and makes the caretaker feel so small, and make no mistake that is a big factor) , it's too much of a learning curb, it's too complicated and way too confining to one's life style.

I have had what I thought were compassionate people tell me, that I need to put my parents in a nursing home - they sure did. What?
Yeah, we sold their home and land and put them in a very swanky nursing home at first. Then the money runs out, then the swanky nursing home's kick them out. Kids have to scramble a bit to find those cheaper homes that will accept just medicare and the care is minimum. They want a shower? Well they might wheel them in a big huge shower with poop all on the floor and hose them down every once in a while.

That is the way it goes for anyone unable to care for themselves and it scares me. .

Susan Welch

Fred - and a happy new year to you too!

Jeannette Bishop

Grist for another kind of mill...

Quotations attributed to Frederic Chopin ( http://www.azquotes.com/author/2838-Frederic_Chopin ):

I am gay on the outside, especially among my own folk (I count Poles my own); but inside something gnaws at me; some presentiment, anxiety, dreams - or sleeplessness - melancholy, indifference - desire for life, and the next instant, desire for death; some kind of sweet peace, some kind of numbness, absent-mindedness...

Oh, how miserable it is to have no one to share your sorrows and joys, and, when your heart is heavy, to have no soul to whom you can pour out your woes.

Sometimes I can only groan, and suffer, and pour out my despair at the piano.

I wish I could throw off the thoughts which poison my happiness, and yet I take a kind of pleasure in indulging them.

Man is never always happy, and very often only a brief period of happiness is granted him in this world; so why escape from this dream which cannot last long?

Every difficulty slurred over will be a ghost to disturb your repose later on.

Liszt commenting on the music of Frédéric Chopin: He confided . . . those inexpressible sorrows to which the pious give vent in their communication with their Maker. What they never say except upon their knees, he said in his palpitating compositions.

https://en.wikipedia.org/wiki/Health_of_Fr%C3%A9d%C3%A9ric_Chopin
"Frédéric Chopin's disease and the reason for his premature death at age 39 were frequently debated. Although he was diagnosed with and treated for tuberculosis throughout his lifetime, a number of alternative diagnoses had been suggested since his death in 1849."

What was that treatment exactly?

My recommendation to the person styling him or herself as Frederic Chopin: Go take some piano lessons if necessary, and play some Chopin, and stay away from mercury and arsenic and the like to every extent possible...

John Stone

Fred

Well, you could not have made your cynicism or your bad conscience clearer, could you? Of course, no one is forcing you to read it...

Frederic Chopin

I dunno what's worse, this or the every Sunday woe is me articles.

Boylegate

Not to forget that the CDC put a veteran of the Agent Orange cover-up, Coleen Boyle, in charge of the vaccine/autism cover-up.

Primum Non Nocere

Dr Lane

Not in itself bad advice but the problem would not arise if we weren’t trying to stimulate multiple kinds of inflammation. No doubt Tylenol has a place in the narrative but people were administering it to sick infants long before before the great rise in autism.

Kerry Scott Lane MD

Autism trigger is TYLENOL when given as a fever reducer with Vaccination.
TYLENOL depletes glutathione used to detoxify metals in vaccines.
Use of Tylenol in the 1989s began the Autism Epidemic.
AVOID TYLENOL!!!

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