No, seriously, walk away from “the jail of autism”

A few weeks ago, I told you about some parents who should walk away from their autistic (or other special needs) children and give them over to people who will look after those children’s needs. They should walk away because they have been led to believe that autism is worse than death. They see people in “online newspapers” gnashing their teeth that they have been dealt a “bad hand” in life and have children with special needs. Those same people are quick to blame anything and everything for their current position in life, and then they pretty much walk away from responsibility and become advocates for some pretty sketchy causes.

Today I heard a story about a woman who is right now waiting to be sentenced for first-degree child abuse. What did she do? This:

“According to the Benzie County prosecutor’s office, on Sept. 3, 2013, Stapleton put her 14-year-old daughter Isabelle – known as “Issy” – in her van, drove to a rural location in Elberta, Michigan, and lit two charcoal grills inside the closed vehicle.

The two were later discovered unconscious from carbon monoxide poisoning. Issy spent four days in a “coma-like state” before making what was described as a miracle recovery.”

Why did she do that?

“In the months before the crime, Stapleton recounted her daughter’s physically abusive behavior on her website. She posted pictures of a black eye that Issy reportedly gave her and described the teen’s “horrific,” often violent outbursts towards other members of the family.

Stapleton “thought this would be the best solution,” police officers said she told them in a statement, “if Issy and her went to heaven.””

Read that again, just so that you can ponder about it a bit more. According to the mother, it was better for her child to die than to continue to live. When asked how she’s doing, the mom said this:

“”The jail of Benzie County has been a much kinder warden than the jail of autism has been,” Stapleton told Dr. Phil McGraw in a clip provided exclusively to PEOPLE. “

I wish I were joking. According to this woman, being in jail is better than being the mother of an autistic child. I wonder where she got that idea? I wonder what kind of rhetoric she’s ben hearing online and elsewhere that a child with autism is “lost,” “gone,” or “dead”? After all, if the child is already lost, then the child is viewed as less than worthy of being alive. If a child is seen as dead, killing them a second time is not that much of a bad thing, right?

Once again, I call on parents of children with special needs who think those children are lost, gone, dead, or who feel that they (the parents) have been cursed or otherwise “sentenced” to a less-than-desirable life to just walk away from their children. We don’t need any more dead children because you’ve been told that autism is worse than death or that an autistic child is not a person.

And, before you mention it, it doesn’t take having a special needs child or “walking a mile in a special needs parent’s shoes” to know that KILLING CHILDREN IS NOT JUSTIFIED AND NEVER WILL BE.

Autism is not death, unless you want it to be

The latest scandal to rock the anti-vaccine crowd has done nothing to sway the opinions of the True Believers® about vaccines and autism. If anything, they think that they have a smoking gun and all the evidence in the world to point their fingers at vaccines as the causative agent of autism. At best (for them), they have evidence that giving the MMR vaccine before 36 months increases the risk of autism for African American boys. That is a big assumption because the DeStefano paper that has been so widely criticized as of late dealt with a case-control study and odds ratios. Thinking that you can reanalyze it as a cohort study with relative risks is poor judgment and horrible reasoning.

I’m not here to talk about all that. Others are doing a fine job in peeling the layers of the ineptitude of Andrew Jeremy Wakefield and BS Hooker in trying to scam the American public about vaccines and autism again:

• Orac tells us here, here, here and here about the whole goddamned thing. In fact, his latest post wraps it all up very neatly with a message to the “CDC whistleblower” and how the whistleblower’s scientific career is pretty much done.
• Todd W. tells us here about Andrew Jeremy Wakefield confusion about history, here about anti-vaccine activists on Twitter not understanding Twitter, and here about the whistleblower telling us all about being betrayed by Andrew Jeremy Wakefield and BS Hooker.
• Phil Plait tells us how, no, there is no connection between the MMR vaccine and autism, yet again, here.
• Liz Ditz tells us about the whistleblower statement here, about Andrew Jeremy Wakefield and BS Hooker implicating an African American researcher in an alleged scheme against African Americans here, and she gives us the overall backstory here.
• Finally, Ren tells us why the whistleblower’s and BS Hooker’s epidemiological and statistical reasoning is unsound here, and how everything came undone for Andrew Jeremy Wakefield and BS Hooker yesterday here.

That right there should be essential reading for you to get caught up. Now, let me tell you about a special group of people…

There is a special group of people who are, for the most part, parents of autistic children (or children with other developmental delays). These people are special because, although their child is right there in front of them, they are under the impression that the child is dead. They refer to their “lost” child, or how their child was “taken” from them, all the while the child is breathing in front of them. In many cases, the child is not just breathing but trying to interact with them. I write “trying” because the amount of online activity these people have makes me wonder if they have any time for their living, breathing, interacting child in front of them.

I’ve told you before why I believe that these people need to walk away from their children, and I even got a rabid anti-vaccine and conspiracy theorist threatening to kill me if he ever saw me in person for it. (Some people react in the weirdest ways to being told the truth.) The joke is on him, though. Ideas are bulletproof.

With so many anti-vaccine activists “hooked” on the “BS” over the “whistleblower”, I started to notice something about how they were presenting themselves online. During their “twitter party,” many of them had a black ribbon as an avatar. Why? Because these “non-sheeple” were told to:

While the black ribbon can mean different things to different people, it’s main use is for grieving or remembering the fallen, the dead. The way that these people have used it is to try to bring attention to their cause by equating autism with a death or a loss.

I call on these parents who think hours-long “parties” on Twitter are the best way to advocate for their children to walk away from their children immediately. Those children deserve love, caring, understanding, and acceptance. Why not go fight for them at school meetings to get them more inclusive curricula in public schools? Why not go to your elected representatives and demand laws to protect your children from scam non-medical treatments like bleach enemas and chemical castration? Why not write letters to the editors of your communities’ newspapers to advocate for acceptance in the community of your children with special needs so that they will not be shunned from your society and, instead, be integrated into it?

But to display black ribbons and say that your child is no more because he or she is autistic? How in any reasonable terms is that the best way for you to do something for your child? Again, walk away, because there are thousands more caring and loving people out there to take care of them than you, based on your brand of advocacy on line and in person.

Return of the “Zombie Children”

I’m not a parent, and I can’t pretend to know what a parent feels toward a child. I figure that it is something very clos to what I feel for my arm. That is, I love my arm and I want nothing to happen to it, or to my brain, or to my heart. Parents, for the most part, love their children as if those children were literally a part of them. An argument can be made that children are an extension of the parent. So I completely understand the distress that a parent would feel when they see their child being disabled or otherwise unable to live a “normal” life.

Then again, there really is no “normal.” There is a spectrum of normal, like there is an autism spectrum, and a spectrum of sexuality. Some children are on one end, and they have lives that none of us would ever even bother to get to know. Other children have neurological conditions that delay their development, and we cringe when we think of those children. (Except for those who’ve dealt with those children, like some of my readers.) We cringe because we think it must be a horrible way to live, and we think so from the outside. We’re not there to celebrate even the smallest accomplishment of that child, or to smile at the “antics” that a child with special needs will perform, especially those antics that are against the expectations for a child with special needs.

Yet there is a subset of parents of children with special needs who continue to call their children “dead.” Within that subset are parents who blame that “death” on vaccines, and, when those two parts of the Venn diagram of denial come together, the results can be sickening.

How we view people with autism matters a lot

If you’ve been reading this blog for a while, you know what some anti-vaccine people who are parents of children with autism have to say about their children. In their minds, they “lost” their children, or their children are an intolerable burden. They write and say these things in the context of vaccines, blaming vaccines for their children’s autism. They also write and say these things in an effort to blame someone for their situation, almost as if to say, “Look how bad I have it!” Many times, it’s all about them.

When they do write about their children, they usually write horror stories about temper tantrums at malls and stores, misbehavior at school, and things of that nature. The woman who wrote that her son was like the Connecticut shooter told us stories of almost being killed by her son. In short, willingly or not, some of these parents are placing their children in the worst light. And there are people who read that and go with it. There are people who look over at their own autistic child, or any autistic child, and wonder what will happen with them and their experience.

The trouble with democracies and religious parents

I traveled to Central America when I was in college. It was quite an eye-opening experience when it came to healthcare. They had socialized medicine, where the state handled everything: the hospitals, clinics, who got to be a doctor, and how much doctors could charge for taking care of you. It seemed to work better in the smaller countries because a centralized healthcare system is more closely overseen by a centralized government. Also, the people had little to no say in their care. Whatever the doctor said was done, and woe be upon the patient that refused. You’re very much willing to accept any intervention if you’re threatened with the bill if you refuse.

There was also the matter of education. Physicians and nurses were the most educated people around, so their patients deferred to them when it came to care. Patients had no access to websites to tell them that all physicians are in the pockets of Big Pharma. Or, rather, “Grande Farma.” They were also not fed lies about other things like vaccines or chemotherapy. Unfortunately, there was also not a lot of oversight when it came to quacks. The quacks would just label themselves “traditional healers,” and the government pretty much left them alone. I remember seeing a homeopath’s office with a line that went around the corner because he would see you the same day, as opposed to waiting for months under the government care plan.

I wonder how many people ended up losing limbs or dying because they chose to take care of their diabetes with homeopathy? But I digress…

How some choose to deal with loss

One of the recurring themes that I see in the world of conspiracy theories is that of loss and revenge. The conspiracy theorist has lost something or someone, and they do their own “research” in order to get back at whatever or whoever wronged them. There are also other conspiracy theorists that, although they’ve lost nothing and no one, will take it upon themselves to be the heroes.

You all know my policy on not naming any names on this blog. But that doesn’t mean I can’t link to their stuff, or to examples of their stuff. So hold on for some scary stuff.

Exhibit A in this thesis is the man profiled in this story from the Seattle Weekly. This man’s story is a sad one, really, because he lost a baby girl about 14 years ago. The girl died, from what we can tell in the story, about a day after receiving the hepatitis B vaccine:

“Lyla, who died a day after receiving the Hepatitis B vaccine shot 13 years ago. He wails in the song: ‘That evening, she stopped breathing/Her face turned blue/Oh Lord, her face turned blue.’”

Wait. A song? That’s right, he wails in his song because the man in question has built a top-of-the-line private recording studio in his home in order to make songs about vaccines. Actually, they are songs about the horrors of vaccines:

“[He] sees his band, pointedly called the Refusers, as akin to the antiwar protest-music bands of the ’60s and ’70s. The group’s music combines a toe-tapping, funk-rock beat with lyrics meant to convey the Nazi-like horror—as he and his allies literally portray it—of this country’s vaccination policies. “Vaccine Gestapo” is the name of one song. In a music video for another, his daughter Viola (also completely unvaccinated) portrays a scared Alice-in-Wonderland figure being chased by a mad doctor wielding a needle.”

Because doctors chase children around to get them vaccinated, if and when they can get away from the long days at the office or the hospital, apparently.

So the man in question lost a daughter, and he vehemently blames the hepatitis B vaccine despite evidence to the contrary:

“Yet it soon becomes even more apparent that there are a lot of unanswered questions about his portrayal of Lyla’s death and its aftermath. Asked, for instance, if he is sure that the medical examiner talked to Merck before switching her assessment of Lyla’s death, he says: “I think so. I told her to.” In other words, [his] allegation is based on nothing more than his own suggestion to the examiner, prompted by his suspicions about the vaccine. He’s also not sure, now that he’s asked about it, whether it was the examiner or, as seems more likely, the police who came to his apartment looking for evidence of child abuse. “I don’t know . . . somebody . . . don’t ask me,” he says. Most crucially of all, [he] says he doesn’t know where the pediatrician’s notes are that prove that the examiner initially determined that Lyla had a swollen brain. “You have to take my word for it,” he says. Later, asked whether he would consent to having the case file from the examiner’s office released to Seattle Weekly, he declines. “To me, it’s a very invasive and intrusive request,” he says, questioning the Weekly’s “fixation” with Lyla’s death. “To me, it’s not the story.””

Oh, but it IS the story, very much. His rants and raves and songs about the evils of vaccination fall on the ears of those who can be swayed away from vaccines, placing them at higher risk for life-threatening – or at least harmful – infections. His evidence for his beliefs are based on his daughter’s unfortunate death. Yet, he doesn’t want to provide any supporting evidence?

Look, I know that it is very hard to lose a loved one, let alone a child. I don’t know this first-hand, but I have been in plenty of situations personally and professionally where someone loses a child. It is heartbreaking, awful. It’s like a personal hell, and I don’t doubt that he has gone – and may still be going – through it.

What I object to is his crusade against an enemy that just doesn’t exist. None of the assertions about vaccines made in his media have been proven, not by independent scientists, not by government agencies, and not by the epidemiology of sudden deaths in children. There is just no evidence to what he claims.

But he’s not the only one.

Exhibit B: There is this woman. Of course, she has her own anti-vaccine blog as well. Hers is also a story of loss, although not at the levels seen in “exhibit A”. This woman is the mother of an autistic child. She describes her situation thus:

“I am the mother of a child who regressed into autism following the simultaneous administration of the DTaP, Hepatitis B, Polio, HIB and Pnumo (sic) vaccines. When I discovered that none of the vaccines My son received that day had been studied for their relationship to autism, and that my pediatrician’s opinion that his vaccines did not cause his autism had no basis in science, I began to investigate and document the vaccine-autism causation theory and other vaccine injuries.”

So, again, we have a parent who is convinced that their child was injured by vaccines. She is convinced about it to the point that she seemingly has devoted her life and her career to promote the anti-vaccine agenda. You can head over and read the rest of what someone in the comments rightly pointed out to be a severe pimping of her book. (Aside: Dr. Offit writes a book and it’s “conflict of interest” this and “Big Pharma shill” that. This lady writes a book and she mentions it ad nauseum in a congressional hearing.) Unfortunately, many parents of autistic children are convinced that they have “lost” that child and will do and say almost anything to seek revenge on those who caused it.

If you don’t believe me that they truly think their child is somewhere between dead and dying, even if all they have is autism, take a read at exhibit C and his blog:

“’Look at me!’ I said hoping to end the tantrum, turning him so his face was in front of mine, but his eyes stared off to the side. ‘Look at me [child]!’ and he refused. This sent a chill up my spine. Not that I knew anything about autism, it was because this just wasn’t like him. I remembered noticing his lack of eye contact when his cousin was with us for the week. I thought that was just him having his feelings hurt and being jealous. But this was different, I was suddenly aware that I was attempting to break him, break his will and instead it broke me. I sobbed uncontrollably, something is wrong, this isn’t worth it, just let him bite, do anything he wants. I left the room, I left him to work it out on his own. I left him to run away. A little later he came into my office where I was hiding my shame, my self doubt, my heartache. He came in and climbed up into my lap and loved me. I cried so hard it made my wife cry. In the 9 years we have been together she has only seen me in this state 3 times, once for reasons I don’t want you to know about, this time when I had the come to Jesus with myself and the last time months later when I knew [he] was autistic… or something.”

The feeling of loss is palpable in his commentary. It really is. This discovery that his child was not neurotypical led this father to crusade against vaccines, as he was convinced that the hepatitis B vaccine his son received at birth and a few months later – since it is in a series – were to blame for the son’s autism. You can continue to read his posts, which suddenly stopped almost three years ago. You can read about his efforts to find out what happened to his child and who was going to pay for it:

“With new statistics coming out showing that the true number of children with autism is close to one in one hundred it is today that we need to pick up our weapon of choice and fight autism with every ounce of strength we have, but not alone, with others, within our community there are warriors of incredible strength and providers of impenetrable armor, find them, link hands and attack, attack as if your child’s life depended on it.”

Note the theme of loss: “(A)s if your child’s life depended on it”.

On the opposite side of the spectrum are the parents of children who have died from whooping cough and are now fighting hard to remind everyone that the vaccine is a safe and effective way to prevent whooping cough. They have made their campaigns very public, and they have taken all sorts of abuse from the anti-vaccine crowd.

For example, the parents of Dana McCaffery have been on the receiving end of harassment by one of Australia’s most rabid anti-vaccine people and organization. I am proud to write little Dana’s name because she should be the one we name, the one we remember when dealing with loss. She died a horrible death from whooping cough, a disease that suffocates you. And hundreds of children just like her are dying of whooping cough, a vaccine-preventable disease. Her parents, instead of being angry and vindictive, have taken it upon themselves to stop this from happening to other families.

Sadly, they are not alone in their loss. Thankfully, they are not alone in their purpose.

Of course, someone is going to accuse me that the death of one child doesn’t override or make less the death of another. The death of one child by whooping cough does not take anything away from exhibit A’s loss. The actions of exhibit A do. You can choose to make something good happen from the loss of your child, or you can choose to be angry and vindictive to the point of spreading misinformation and fear about a safe and effective way to prevent more loss. It really is your choice… But it will have consequences beyond your control.

Autism Awareness, Understanding, and Acceptance

I used to think of autism as this horrible, debilitating condition that whose sufferers were mentally incapacitated, unable to live a proper life, a burden to their parents, and maybe even worthy of living in group homes and not much more. That was me about 20 years ago, when an autistic girl – totally non-verbal and prone to fits and self-harming behavior – was accepted into the middle school I attended. Being the idiotic teenager that I was back then, I joined in the gossip and somewhat bullying behavior of pointing at her and laughing. Deep inside me, I wished and prayed that I would never have a child with that affliction.

Growing up and opening yourself to new experiences, new people, and the science of things really does change the way that you look at the world, or even at the universe. April was “Autism Awareness” month, and I wish that they would have had such a wide array of educational material and communications when I was a kid. I probably would have understood what that little girl went through a little better. I probably wouldn’t have been such a [expletive].

My next interaction with a child with autism was when I had my first job out of college. One of my coworkers brought in her 6 year-old boy to introduce him to us. He was quiet and didn’t really say much to us as she took him around the office. I held out my hand to tousle his hair, but his mom grabbed my hand. “He doesn’t do well with touching,” she said. “He’s autistic, so those kinds of interactions don’t register the same for him as they would for you.” This perplexed me a bit. I was a science major in college, but I had not studied neurobiology enough to understand how things “register” in the brain.

The next interaction would be a couple of years later when I started studying epidemiology and biostatistics. The vaccine-autism pseudo-link was being pushed heavily back then (late 90’s, early 2000’s) because of Wakefield’s fraudulent study. So I learned the dry, impersonal definition of autism:
“A disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior.”
That was it. I no longer worked with the mother of the child with autism, so I had no real first-hand experience with anyone with autism. I knew what it was, but I didn’t know “how” it was. I was aware of autism, but I didn’t understand it.

That all changed once I really started getting involved in the discussion about vaccines and autism. The data that I had looked at – and some that I analyzed – wasn’t backing-up Wakefield’s claims. I stated this publicly as much as I could because the fears of vaccines were becoming more and more prevalent around me. People were vaccinating less out of their fear of autism. So it was time to understand autism.

The great majority of my understanding came from reading the blogs of science-oriented, reasonable people who explained their lives with autism. The most eye-opening part to me was that autism was not the debilitating and horrible condition that I had made out to be so many years before. People with autism can lead fulfilling and productive lives. They have a wide range of skills and abilities – some being “super” abilities, if you ask me. Even if the child with autism is non-verbal and lives in “their own little world”, autism surely wasn’t the “loss” that so many had made it out to be in their rants about their own experiences. Though I cringe a little to write that because, honestly, I don’t live their lives, so it is impossible for me to truly weigh their experiences.

Sure, there are challenges for people with autism and their caretakers. Yes, they are not typical, so their lives will not be typical. But none of that makes them any less of a person, or someone less worthy of being respected and cared for. That’s what I understood once I saw and read about the human side of autism, about the many parents who love and care and lookout for their children with autism. That’s when I accepted autism.

If you are confused, unsure, questioning, curious, or just want to know more about autism, I recommend the “Thinking Person’s Guide To Autism”.

Death and autism

I saw a man die one night in the emergency room. He was brought in while in the middle of a heart attack. He was covered in sweat, clutching at his chest. The oxygen mask over his face was fogged up as he tried desperately to breathe. Inside of him, a blood clot was starving his heart of needed oxygen, causing the pain. In an effort to adapt – and because the wiring was disrupted – his heart was beating faster and more irregularly. Because his oxygen transport to his brain was impaired by the malfunctioning heart, the brain was ordering the diaphragm and lungs to breathe faster, to try desperately to get more oxygen going. This made the rest of his body think that he was exercising, so he was sweating profusely.

Despite heroic efforts by everyone in the emergency room, the man passed away. One of his last acts was to reach out and hold the hand of a young lab tech that was there drawing his blood. “You’ve gotta save me!” It was really quite an experience for all of us there.

Death is one of those inevitable things about being human. All of us alive today will die one day. It’s a statistical certainty. Something will happen that will prevent us from functioning anymore. Our brains will cease to process information and order our bodies around. The immune system that once repaired our bodies and kept infections at bay no longer works, allowing the microbes that inhabit our bodies to multiply uncontrollably, eating the human parts of us, decomposing us.

Given enough time, nothing of us remains.

That is death.

Now, here is the definition of autism:

“Autism is a developmental disorder that appears in the first 3 years of life, and affects the brain’s normal development of social and communication skills.”

That doesn’t read like death. Here are the symptoms of autism (from the same page):

“Children with autism typically have difficulties in:

• Pretend play
• Social interactions
• Verbal and nonverbal communication
• Some children with autism appear normal before age 1 or 2 and then suddenly “regress” and lose language or social skills they had previously gained. This is called the regressive type of autism.

People with autism may:

• Be overly sensitive in sight, hearing, touch, smell, or taste (for example, they may refuse to wear “itchy” clothes and become distressed if they are forced to wear the clothes)
• Have unusual distress when routines are changed
• Perform repeated body movements
• Show unusual attachments to objects
• The symptoms may vary from moderate to severe.

Communication problems may include:

• Cannot start or maintain a social conversation
• Communicates with gestures instead of words
• Develops language slowly or not at all 
• Does not adjust gaze to look at objects that others are looking at
• Does not refer to self correctly (for example, says “you want water” when the child means “I want water”)
• Does not point to direct others’ attention to objects (occurs in the first 14 months of life)
• Repeats words or memorized passages, such as commercials
• Uses nonsense rhyming

Social interaction:

• Does not make friends
• Does not play interactive games
• Is withdrawn
• May not respond to eye contact or smiles, or may avoid eye contact
• May treat others as if they are objects
• Prefers to spend time alone, rather than with others
• Shows a lack of empathy

Response to sensory information:

• Does not startle at loud noises
• Has heightened or low senses of sight, hearing, touch, smell, or taste
• May find normal noises painful and hold hands over ears
• May withdraw from physical contact because it is overstimulating or overwhelming
• Rubs surfaces, mouths or licks objects
• Seems to have a heightened or low response to pain

Play:

• Doesn’t imitate the actions of others
• Prefers solitary or ritualistic play
• Shows little pretend or imaginative play

Behaviors:

• “Acts up” with intense tantrums
• Gets stuck on a single topic or task (perseveration)
• Has a short attention span
• Has very narrow interests
• Is overactive or very passive
• Shows aggression to others or self
• Shows a strong need for sameness
• Uses repetitive body movements”

None of that sounds like the definition of death. At least, it doesn’t to me. This is why it is difficult for me to understand why so many parents of children with autism claim that they “lost” their children to autism. They speak of their children as being “gone”. Some have even gone as far as actually stating that their children would have been “better off dead”.

Of course, it must not be easy to care for a child with autism. It can’t possibly be “easy” to look after someone with all of those symptoms mentioned previously, especially if there are other children to look after, or a full-time outside job, etcetera. If the child is withdrawn and non-verbal, it must be difficult for a parent to see other parents playing catch with their children. It is only human to long for those things.

I write all this being the parent of only a quadruped that I adopted from the pound. But I do have first-hand experience with death. When someone dies, they’re gone forever. That’s it. There is no warmth in their touch. There is no daily challenge to overcome. There is no living for someone anymore, no more working to save that person.

Maybe I’ll understand if I become the parent of a child with special needs. But one thing I promise to never do is to think of that child as dead.