The 12 Days of Skyhorse Publishing Day 9 The Autism Job Club
Dr. Bob Sears on 1 in 36 Autism Rate

Grist for the Mill for the Turning of Backs: When Family Defects from the Defective

Deliverance painting
Teresa Elliot, “Deliverance”

 

Part 1

By Adriana Gamondes

F*ckyoulujah

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”:

Fuckyoulujah. 

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.

Comments

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Adriana

Cara-- aside from the fact that we are everywhere, a lot of recovery families have filled out the gaps in their support networks through participation in TACA meetings and events. No one wants others to end up in this boat but since we're all already in it, at least the company is stellar.

Cara Mac

How can we find each other? I desperately need friends also recovering their teens—we can form new families!

John Stone

Few would see the introduction of universal education as an altogether negative thing - it shouldn’t mean that we have to see the state as the arbiter of all knowledge. What is knowledge should not be up to the highest bidder - that is not necessarily what follows from having government - and education also gives us the means to interpret what’s going on, or going wrong. I am interested in what David Weiner is saying - it is certainly interesting as an historical observation- but I am not sure that there is any way back to the primal state, or that it was that good. The question is how do ordinary citizens protect themselves from propaganda. I am sure that also was difficult in times before big government - Salem for example. Progress would not be going back to people whispering that their neighbours are witches (which is the same thing writ small as Arthur Miller was pointing out 60 years ago).

99% of what our children have to learn and repeat in our state regulated science exams is probably OK: it is by no means OK that they have to repeat state sponsored lies about Andrew Wakefield - it shouldn’t, doesn’t have to be part of the price of universal education.

Benedetta

David Weiner; Oh, so that is why it is important to break down the family, so we are easier to be ruled over..

Twyla

You sure are a good writer, Adriana!!

So happy for your twins’ progress towards recovery and health. I wish your extended family could appreciate that!

Denise Anderstrom Douglass

Thank you, Adriana, you have painted a true picture of what it is like, and at the most stressful family time of the year. I think, and I am only the grandmother, that we are a separate culture now.

David Weiner

Benedetta

"At this point in human history is it not strange that people will believe authoritative figures , over members of their own clan?"

Ain't that the truth. Unfortunately, the importance and integrity of the family has been systematically attacked over the last 150 years, though most do not recognize this. Education has been outsourced to the government. Medical decisions have been outsourced to the government (i.e. the vaccine program and other forms of interference). Governments have assumed a lot of the financial support that families (and churches and other voluntary organizations) used to provide. And, in general, a culture promoting the knowledge of "experts" has demoted the knowledge of family members to "old wives' tales" and such.

Benedetta

At this point in human history is it not strange that people will believe authoritative figures , over members of their own clan?

Adriana

Thank you for all the insights. I suspected all along that the most valuable part of this project would end up being the comments.

John Stone

Carolyn

I can't find this study on Pubmed, so it probably never got to full publication. The claim in the press release was very strange:

"PHILADELPHIA, PA - Having a child with autism can put stress on the parents' marriage, and a frequently cited statistic leads to a common perception that the divorce rate among these families is as high as 80 percent. But a study to be released at a news conference today by researchers from Kennedy Krieger Institute in Baltimore found that a child's autism has no effect on the family structure."

Well, whatever the statistics to phrase such a statement is absurd. Also, I am not sure that you have established that there is no divorce data from other sources. Oddly, enough when I tried to look the topic up on Google all roads seemed to point to this apparently unpublished study which "debunks the myth". But a study published shortly after Freedman's conference presentation reports:

"We compared the occurrence and timing of divorce in 391 parents of children with an autism spectrum disorder (ASD) and a matched representative sample of parents of children without disabilities using a survival analysis. Parents of children with an ASD had a higher rate of divorce than the comparison group (23.5% vs. 13.8%). The rate of divorce remained high throughout the son/daughter’s childhood, adolescence, and early adulthood for parents of children with an ASD, whereas it decreased following the son/daughter’s childhood (after about age 8 years) in the comparison group. Younger maternal age when the son/daughter with ASD was born and having the son/daughter born later in the birth order were positively predictive of divorce for parents of children with an ASD. Findings have implications for interventions focused on ameliorating ongoing and long term marital strains for parents of children with an ASD."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2928572/

It looks as if someone is using Google to spread misinformation of a "debunking the myth" nature. Whenever I see the word "debunking" my suspicions are immediately alerted. A "debunk" does not have the demand on it of proving that something is not true, only of making it appear not true. The term itself is generally only used when half truths and lies are being dealt in. It also involves the social status of the target audience ie "you will lose face if you believe x", so it is very manipulative.


Hans Litten

Posted by: Carolyn Fitzenreiter | December 14, 2017 at 10:16 PM

The stress of a vaccine damaged child is huge , and the lying thieving CDC says its now 1 in 36,
So why would you dismiss that figure out of hand ? 80-90% like that.
Particularly when the divorce rate in general is running at 50% in London and that includes those couples without children , and couples with neurotypical children.
Why does this figure seem random ? (in truth I don't know where it came from but I believe it entirely possible given my experience of the carnage & mayhem Vaccines cause.)

According to the Crimino-Thorities in the UK autism is still at a rate of 1 in 100.
It hasn't been revised or reissued for 13 years now.
State censorship or more commonly known as LYING. (BBC led)

Jeannette Bishop

Completely off topic (maybe not quite...this question does involve a question of grammar I suppose...), assuming Senator Paul has this story straight, is the diversion of autism research funding over to NASA (or maybe some other group possibly aiming to study or restore historical NASA recordings to ascertain whether or not the article "a" was spoken by Neil Armstrong) a sign that all government "health" researchers are at a loss as to how to waste more research dollars not figuring out anything useful regarding autism?

https://youtu.be/X_rsRFr6kRc?t=6m10s

annie

Silly Rabbit!

Your 'friend' was tearing up because she was just so happy that - while Your Kiddo didn't have the patience to wait for His loving, brilliant, thoughtful parents to gather everything He would need for and outing - at least He wasn't stricken with the measles.

Ignorance is so blissful it brings its victims to tears.

Thank you SO MUCH Ms Gamondes! You are the most amazing writer ever! I am so grateful for the brilliance of this publication! When i read You ladies and gentlemen i feel as if, at the end of it all, things will be ok. Again, i thank You emphatically!

Theresa Cedillo

Thank you Adrianna for covering this painful but important subject. As always, your writing is art. I'm always sad for the suffering on top of a situation full of suffering. I can't understand it. I'm so happy, though, for the twins' recovery and healing. I know it's been a long journey.

Carolyn Fitzenreiter

Divorce rate is the same for ASD and non-ASD families: https://www.kennedykrieger.org/overview/news/80-percent-autism-divorce-rate-debunked-first-its-kind-scientific-study

I know. You keep seeing 80-90%. There's no documentation for it. Someone pulled it out of the...air.

nhokkanen

Thank you, Adriana, for carefully constructing this elegantly resonant treatise on extended-family fails in comprehending autism’s realities. Being the receiver of selfishly wrong-headed thinking from relatives and close friends is so disheartening and disillusioning. When our trust is damaged by people who judge rather than listen and learn, we find ourselves compelled to reassess the value of those connections – no matter how close.

I saw the ass-end of three generations of lifelong family friends when two grandchildren sneeringly attacked people on Facebook who’d stated that mercury in vaccines is unsafe. Grandpa’s smug dismissal of Thimerosal critics as “true believers” (Kravchenko et al. notwithstanding) made clear who’d nurtured the younger ones’ misinformation… not to mention their repellent arrogance.

Years before, the grandmother — a devotee of Time and Newsweek — insisted to me that the Danish autism studies were “very well done.” For my mother’s sake I quelled my incipient anger and let the discussion end. But over the years my family’s collective passive silence simply helped enable our friends’ egotism to grow unchecked.

Regarding the “insufficient political armature” you mention: Last February as my mother lay in a nursing home hours from death, a younger family member revealed he’d inadvertently trolled me on a newspaper comments section on vaccine issues. That sparked an ill-timed and marginally productive discussion of vaccine policymakers, with him plaintively wondering, “Maybe if they just did a study” to prove a vaccine/autism link. Such uninformed flailing mental static illustrates the helpless public disengagement that’s kept CDC officials out of jail all these years.

God spare us from the naive, the rationalizers, and the generalizers. I almost threw a shoe at my TV when Comcast shared this Freud quote: “One day, in retrospect, the years of struggle will strike you as the most beautiful.” And here’s one Google result for "the most controversial psychoanalyst since Freud”: “French Philosopher Jacques Lacan Was Sort of a Dick.”
https://www.vice.com/en_us/article/4w75en/jacques-lacan-was-sort-of-a-dick-323

Wendy Frye

Stunningly accurate summary of my families experiences for the last couple of decades. All my compliments to you, Adriana. I'm forwarding this link to my estranged family now.

Jeanne J

Adriana, I am so sorry that you have had to endure this degree of criticism and ridicule from some members of your family. I hope that the joy of seeing the recovery process of your sons provides you with the satisfaction of knowing, that as their parents, you and your husband made the hard but right choices for their lives. Thank you for sharing both your pain and your strength!

Erin T.

So well written and I truly resonate. Thank you for writing about one of the most isolating and painful parts of this journey

Jeannette Bishop

Apparently, you've been such amazing autism parents that your children's progress smacks sharp against the walls of somewhat comfortably (or maybe forcibly) fashioned world views! They might have to undergo some major renovation project, maybe sacrificing some beautiful rosy-tinted windows here and there, to fit your reality inside, too. So sorry you have this to handle from some in family circles!

But I'm so very happy to hear of the positive, and I hope a general broadening, enlightening education of how much of what ails us is actually injected into our "developed" and "developing" societies is about to dawn.

Sherri

Adriana - As always, beautifully written.
How have I gone 25 years without knowing of the existence of this idiot Lacan? I'm now wondering if a certain member of my family who, born in France and extols as superior all things French, has been harboring these sentiments all along. Nauseating.
I look forward to the remaining segments to pass on as a whole. Well done.

Bill

I'd like to see you edit down the piece above into a "Letters-to-the-Editor" format for publication in ALL newspapers, and much wider internet distribution.....

Donna L.

You always manage to turn writing into a work of art, Adriana!

As far as the homeschooling critique, take some comfort (!) in knowing that idiots criticize that choice whether your child is autistic or completely neurotypical. And yet every parent who has had a child both in and out of the school system knows in their heart which environment leads to greater academic and emotional gains. Personally, I think the harshest critics of homeschooling are people who know that schools totally suck, but don't have the guts to teach their kids at home.

And as for the never-ending barrage of judgment from outsiders, well, you totally nailed it.
My husband told me something 10 or 15 years ago, while my son was still small, that still helps to this day: Disregard the opinion of anyone who you couldn't call to help you with your kid in an emergency at 2 a.m.
For me, that pretty much rules out every single family member/relative, every single stranger judging us in a store or medical facility, and ironically, even my husband. I am on my own.

So yes, as you say, autism is becoming a separate culture. For many of us, it's an entirely separate universe at this point.

Looking forward to Part Two, and thinking Dan is somewhere out there enjoying the hell out of your writing today!

greyone

Adriana
thank your for your eloquence.
I always gain new insights from your writing.

Laura Hayes

Adriana,

Poignant, well-written, spot on, and needed. Eagerly awaiting part 2.

Thank you for sharing your experiences and incredible writing skills with us here on AoA.

bob moffit

"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."

I remember when my now 18 year old grandson was first diagnosed .. somewhere around 2001 .. listening to national radio host Michael Savage .. who .. in 2008 .. made the following .. extremely hurtful .. ignorant observations .. while offering his "advice" on how parents raising a child with autism should act.

From NY Times article on comments by national radio host Michael Savage:

https://www.nytimes.com/2008/07/22/business/media/22sava.html

"On the July 16 installment of his program, which is broadcast every weekday, Mr. Savage suggested that “99 percent of the cases” of autism were a result of lax parenting. He told his audience: “They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life.’ ” Among the other admonitions he felt children with autism should be hearing, he said, were: “ ‘Straighten up. Act like a man. Don’t sit there crying and screaming, idiot."

I was among a small handful of outraged parents who demonstrated outside Savage's radio station the following day. I have never listened to his show again .. and .. as far as I know .. Savage has NEVER apologized nor altered his opinion on what he believes are the "causes" of 99% of autism cases.

Zoey O'Toole

One of the most irritating and infuriating things to me watching the world interact with my friends whose kids have autism is that the general public is so invested in telling them how it is rather than LISTENING to the people who really KNOW how it is. Their version of "how it is" is always based upon some superficial article in mainstream media that focuses on a single person or a single aspect of life and ignores virtually everything else they may experience. This is a general failing people have when confronted with something bigger and scarier than they know how to deal with. They want so badly to believe that they are in control of their children's (or, worse, their potential children's) destiny that they lay that expectation onto other people and their children, often in the complete absence of any evidence to support their beliefs. Any trait they deem as undesirable in children is due to "poor parenting."

If it's any comfort, and I don't suppose it is, the world often finds a way to crack that smug self-confidence right in half. In the meantime, you will be helping so many by writing about your experiences. This is an important and difficult topic to handle. Thank you for doing so beautifully.

Grace Green

This is a very moving article. Thank you for writing about your experiences. I home-educated my sons, and of course received much criticism, both openly and by implication. Now they're both in their thirties, and I know I did the right thing. No-one should be in any doubt, we are now in the time when the wheat will be sorted from the chaff. Please don't let yourselves lose any sleep over friends and relatives who are blind to the truth. They're not worth it.

Angus Files

I`m sure what we all would wish for Christmas.

Its a sick world wide conspiracy against us all that takes into consideration our friends family and any other well intended person towards our plight.

When you stop believing in Pharma you get whats coming.Bring it on!!I say!F*ckyoulujah Fa-la-la-la-la, la-la-la-la


Thanks for the great article

Pharma For Prison

MMR RIP

Hans Litten

Five Eyes

https://theintercept.com/2014/02/24/jtrig-manipulation/

How Covert Agents Infiltrate the Internet to Manipulate, Deceive, and Destroy Reputations

John Stone

Thank you Adriana for writing about this, John

susan welch

Thank you so much for this article. I suspect that all families have similar problems but in varying degrees. Yours sound horrendous. Unfortunately it does seem to be that some people simply cannot accept vaccine injury until, of course, it happens to their own children immediately after multiple shots in one visit.

From my own experience of a grandmother of 2 vaccine injured boys, some family members are completely 'on board', some accept that it happened to my grandchildren but still think vaccines are a necessity (especially the flu shot!), others just don't want to discuss it and some simply don't believe it. It hasn't caused a rift but I'm sure that if it was my children, rather than my grandchildren, I would be in a similar situation.

I am so sorry for the situation you are in and hope it won't be too long before 'the powers that be' have to admit that injecting neurotoxins into small babies in vast amounts has devastating consequences. Even then I suspect you may be faced with family members who still think they are right. The power of propaganda is immense!

Hans Litten

Destruction of the family (both extended & nuclear ) has been on their agenda for quite sometime.
The Richard Day diaries from 1968 documents it going back at least that far .

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