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. Continue reading

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Autism: It is not a disaster

Believe it or not, people who are mentally ill are more likely to be victims of violence than perpetrators of violence. This doesn’t make much sense to people because we want to believe that someone who kidnaps, rapes, and murders a person has to be deranged. A “normal” mind can’t possibly do something so horrible, right?

Even worse, a lot of people are quick to point out that a criminal — especially a young criminal — was kind of “quirky” or maybe had “autism or something” instead of waiting for the facts to come through on a case. I believe that it’s our own attempt to justify what happened and to tell ourselves that we would never do something like that. Because, deep down, we’re afraid to be monsters ourselves.

Don’t deny it. It’s true.

Furthermore, autism and other neurological disorders are not mental health problems. You wouldn’t walk up to someone with cerebral palsy and say that they’re “crazy,” would you? Likewise, you wouldn’t say that Muhammad Ali, who has Parkinson’s, is more likely to commit violence than someone who is neurotypical. Would you? Nevertheless, for a very long time, children with cerebral palsy or autism have been treated as being “crazy” or “quirky,” and mass shooters as possibly being autistic (with the implication that said autism was the cause for their violence).

And so we come to yesterday’s news that “1 in 50 children have autism.” From Dr. Willingham’s post:

“According to the CDC, hidden within these numbers is the finding that most of the increase from 2007 to now occurred in school-aged children. In other words, given that it’s possible to diagnose autism as early as age 18 months and usually by age 5, many of these new autism diagnoses were in children who received them relatively later. Children who were, therefore, walking around for quite a few years with autism that went unrecognized … and uncounted. That fits with the idea that a lot of the increase in autism we’ve seen in the last decade has much to do with greater awareness and identification.”

The anti-vaccine blogs are already chomping at the bits at what this new prevalence number means, totally misunderstanding the meaning of the data. (I’m not surprised, are you?) Not only that, but they have their dire predictions:

“Any expressions of concern from anybody with the power to do something about this disaster? No . And the press, as usual is soft pedaling the findings. Fifteen years ago the autism rate was 1 in 10,000, 12 year ago it was I in 2,500, 10 years ago it was 1 in 1000, and so on. When President Obama was elected in 2008 the official rate was 1 in 150, then it went to 1 in 88 and now it is 1 in 50. Where is it going to stop?”

It will never stop. We will get to 100% saturation. Every child will be autistic.
I’m joking, of course. The prevalence rate will remain the same as it has always been. Our estimate of it will even itself out and approach the prevalence rate and remain there. This is because our ability to do surveillance for autism is improving. The identification of cases by healthcare providers is improving. People with autism are coming forward and demanding to be counted. Our elected leaders are devoting more resources to ways to assist people with autism to lead long and productive lives. These are all good things.
It is not a disaster.
What is a disaster is that people who call themselves “advocates” for children and adults with autism continue to say and do things that actually harm people with autism and other neurological disorders. They call it a “disaster” to have a child with autism, or they say that they “lost” their child to autism. They then write that their children are monsters or have monsters inside them. And we’re supposed to just stand back and be understanding because we don’t have children or children who are autistic? We’re supposed to agree that it’s a “disaster” when all rationality says that it’s not and that children with autism can and will grow up to be productive citizens who even appear on CSPAN as advocates of people with similar neurological disabilities?
No, we’re not. I won’t. And I hope you won’t either.

Prevalence, Prevalence, Prevalence, Prevalence!

If you have an anti-vaccine agenda, and you want to scare people off vaccines by telling them that vaccines cause autism, and you want to scare them about autism, then all you have to do is get the definition of prevalence wrong. Then, take a national emergency like Hurricane Sandy and write some half-assed blog post about how autism is some sort of a national emergency that needs to be addressed immediately but is being hidden from the public by special interests.

How something that is emergent like that can be hidden remains a mystery to me, but — as always — facts don’t ever get in the way of a good anti-vaccine, anti-government, big conspiracy nut’s blog post. Like this one here. If you can stomach it, go read it, then come back for today’s breakdown of the [redacted] spewed there.

Let us begin with two quick definitions. “Incidence” is the number of new cases of a disease or condition divided by the number of people at risk. For example, the incidence of cervical cancer would be the number of new cases divided by the number of women with cervices. Note that we don’t include men in that rate/proportion because men don’t have uteri nor cervices.

“Prevalence” is the number of existing cases of a disease or condition divided by the total population. For example, the prevalence of diabetes is the number of total diabetes cases in a community divided by all of the people in that community. These two numbers, incidence and prevalence, tell you very different things epidemiologically. Only incidence can tell you if you have an outbreak, or national emergency, on your hands.

For a condition such as autism, where the person who has autism rarely, if ever, dies from it and can lead long, productive lives, the prevalence rate will continue to climb and climb as more people are diagnosed and more of them are living long. Even if the incidence (new cases) drops precipitously, the fact that there are new cases will mean that prevalence will continue to rise. I’ve explained this to you before, haven’t I?

I have.

I really wish the author of that post had an epidemiologist who she could ask about these things before looking foolish. All she has is an even more hardcore anti-vaxxer who is trying to become an epidemiologist. But that’s a whole other story.

Anyway, back to the post in question. In it, the author states the following:

“Starting in the 1980s the autism rate began an ever-ascending climb. 

1995 1:500
2001 1:250
2004 1:166
2007 1:150
2009 1:110
2012 1:88″

She quickly acknowledges having been told the reason for this climb in prevalence, but she immediately refutes it:

“For years the medical community has been credited with “better diagnosing” of a disability that’s always been around. In other words, we’ve always had people like this in society– we just didn’t call it autism… The trouble is, no one has ever had to prove the claim of “no real increasing—better diagnosing.””

Allow me to highlight the troubling part of her statement:

“…no one has ever had to prove the claim of “no real increasing —  better diagnosing”

No one? Really? What about this, this, this (.pdf), and this? Those don’t count because of [insert conspiracy theory here]? Oh, well, I tried.

And then she gets all conspiracist about it:

“That hasn’t stopped authorities from claiming that they’re out there somewhere, undiagnosed or misdiagnosed. It would be especially interesting to see the 40, 60, and 80 year olds with classic autism, whose symptoms are evident to all. It would be of real significance to find middle aged and elderly people whose health history also included normal development until about age two when they suddenly and inexplicably lost learned skills and regressed into autism.”

In other words, because the author doesn’t see them, they must not exist.

Tell me something. Do you “see” people with schizophrenia everywhere? Well, you should. You should see them because 1.1% of the world’s population suffers from it. As it turns out, 1.1% is 1 in 88.

Let that settle in for a little bit. Maybe get up and stretch and whatnot.

Based on prevalence, there are just as many people with schizophrenia as there are people with autism. In the cases of both conditions, the prevalence will continue to increase not because there is some “tidal wave”, “hurricane”, or “emergency” of number of incident cases. Nope. The prevalence will continue to increase because people with these conditions are being treated and accepted — diagnosed and intervened on — and allowed to be part of society. No longer are they being institutionalized in the same manner or proportion as they were in the past.

But we don’t “see” them everywhere because these kinds of conditions manifest themselves at A) a certain age, and B) as a spectrum. You don’t see kids with schizophrenia because it manifests in young adulthood. You don’t see a lot of schizophrenic adults because they are either being treated for their condition and lead “normal” lives or are institutionalized (e.g. sanatoria or even jail). Likewise, you don’t “see” autistic children everywhere because, well, seriously, how many of us wander around elementary schools? And the 1 in 88 adults? I’ll get to that in a second.

By the way, I have several friends with mental health issues, including schizophrenia, and central nervous systems that are not typical, and I love them to death. But I digress…

The author of the misinformed, misconstrued blog post then want to see the following:

“The problem is no one has ever been able to show us the one in 88 adults with autism.”

The author wants to believe — or make her readers believe —  that 1 in 88 adults has autism. I hope it’s an oversight on the author’s part because the prevalence rate on autism is for children. Here, I’ll show you:

“About 1 in 88 children has been identified with an autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network.”

It’s children. There are less children than adults in the United States. So you can’t extrapolate that number willy-nilly without use of some biostatistics. Again, if only she had a [expletive] epidemiologist to help her sort these things out and not read so idiotic.

Finally, if you can do me a favor and not even mention the author’s name in the comments. She’s been known to go all “decepticon” and have her bot fill comments sections with what can be best described as manure.

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.