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.

Mental Health and Hygiene

This whole thing with the child abuse allegations at Penn State reminded me of the biggest – or one of the biggest – problems in public health in the United States and elsewhere in the world. What could be just as bad as malnutrition and outbreaks of infectious disease? What can tear individuals and their families apart like very few other things can and still be largely ignored as a problem?

Mental health.


I remember the look on the face of one of my ex-girlfriends when I told her that I had gone to talk to a counselor. She was shocked. Instead of asking me if there was something she could do, she asked me what was “wrong” with me and if she should be worried about me, not for me. I explained to her that the workload of school and my two jobs at the time were getting to be too much, and that I needed to talk to someone who would hold my thoughts in confidence and see problems from outside and without much bias.

That wasn’t enough for her. She retreated from our relationship to the point that we broke it off after a few weeks. Later, I would find out that she started spreading the rumor that I was “crazy”, so much so that I got pulled into the boss’ office to talk about my “problem”. Can you imagine if I really did have some sort of a paranoid disorder?

I also remember a time when an uncle of mine tried to commit suicide and how the family reacted. Many of them branded him a “sinner” because, through some twisting of their logic and their religion, suicide attempts are sinful, something that God hates.

Uh, no.

And these same stories repeat themselves over and over again each and every day all over the world. People who seek mental health care are branded as being crazy or inherently broken. People with addictions are thrown in jail and forgotten. People with trauma of some kind are branded as being “weak” or just not able to deal with life. And don’t get me started on the stigmas of people with depression.

Yeah, like you can be cheery all the time in this economy.

Listen, when you get hepatitis, your liver is infected and doesn’t act normal. It makes you sick on the outside, making you look yellow from all the bilirubin. If you get pneumonia, you’ll be coughing and very miserable. So why is it any surprise that an illness of he brain manifests itself in our mood and in the way we interact with the world. How we see the world is processed by the brain, so it stands to reason that anything wrong with the brain will change our view of the world.

It’s the cultural and social stigma that is associated with mental health problems that really gets to me. I hate it when people say that someone who is addicted to a drug – or food, or anything – is broken or has some sort of control over their addiction. It’s called an addiction for a reason, and it needs to be addressed because addictions don’t just affect the addict. The addict’s entire world is somehow affected, and that effect is most often not a constructive one. But there are so many people, many in power, who ignore their own addictions and treat addicts worse than lepers.

Mental health is a matter of public health that we need to address just like we would any other disease and any other outbreak thereof. We need to come together and work with experts in the field of mental health to look at what is going and attack it head-on. None of this, “it’s a private/family/personal matter” crap because it’s not. Sure, the underlying details of what has lead to the mental disease is private, as are the individual details, like those of any other medical patient, but the overall problem is all of ours.

I mean, I’m sitting here listening to an interview of Darrell Hammond on NPR and feeling very bad about all he’s gone through, how his mother’s mental disease infected him as well. I’m also very proud of him for coming out so sincerely about his condition and how it has affected his life, and I’m happy that a big outfit like NPR is publishing the interview. His book is definitely something I need to read… We all need to read.

Too many things need to be our “Manhattan Projects”, but this is one of those that we can’t allow to go uncontrolled any more.