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.

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3 thoughts on “Death and autism

  1. @Chris – Thank you for sharing your experience. Very eye-opening.@Peter – Who has claimed it? All you have to do is look at the statements and positions of many members in the anti-vaccine crowd: "They've taken away our child." "I lost my child to autism." And yes, there have been those who have said that they would prefer a dead child to a child "trapped" in autism.It is my policy not to identify people by name, especially the anti-vaccine crowd. Many are self-centered enough to have google searches set up to show up and attach the minute they are named. Like they advice, you all you have to do is "google" them to see their statements.

  2. I think this is silly semantics, and a straw man argument. Who has claimed that autism = death? People with disabled children do grieve for the child they might have had. The grievind process is very similar to that following a bereavement. It may be worse, taunted, as parents are, by the daily reminders of the child they might have had in their living, disabled child.

  3. I have a child who is a disabled adult. Many of the points to diagnose autism match my child, but not all of them. Especially "Uses repetitive body movements" bit. The problem is that he had seizures as a newborn, and later while ill with a now vaccine preventable disease.He also has genetic heart disease. This is why he gets prophylactic antibiotics prior to dental procedures, and has priority for the annual flu vaccine. He was denied a pertussis vaccine as a child because of his seizures, I made sure he got the Tdap as soon as possible when he was older.Yes, he is disabled. His behaviors are aggravating, but we still love him. We like him more alive than dead. Even though he is 23 going on 14, every year he is alive brings improvement. That means there is hope.

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