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:

black_ribbons

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.

The real fight in the autism community is acceptance, equality, and advocacy, not vaccines

While we, the scientists and reality-based people, are fighting back the claims and misinformation of the anti-science and anti-vaccine groups and their activists, there are issues that need addressed in our society when it comes to autistic people. Those issues don’t have to do with complicated concepts like immunology or chemistry. They don’t have to do with abstract concepts like whose feelings get hurt by using “autistic” versus “person with autism.” No. These issues are simple, from a certain point of view.

In the United States, we have these sets of laws at the local, state, and federal level to require employers to pay a certain wage to their employees. We call this the “minimum wage,” and it’s been holding steady at $7.25 at the federal level. States and local governments may require higher minimum wages (e.g. San Francisco has it at $10.55 this year), but all wages have to be at least $7.25 to comply with federal law. Well, not all wages.

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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.