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.

Movies You Should Watch: "My Own Country"

“My Own Country” (1998) is a movie based on the book by the same name by Dr. Abraham Verghese. It tells the story of Dr. Verghese’s experiences in the South in the beginning days of the HIV/AIDS epidemic. The movie, like the book, is not for people who are still, to this day, close-minded about the origins of the epidemic. They should read the book and watch the movie, yes, but it is presented in such brutal honesty that it will only make them revolt against it even more. People who see this movie and are inspired to see human beings as the frail and fallible beings that we are will also come to see people as capable of unconditional love… Something reserved in literature and history only to the deity of the highest order.

Dr. Verghese was an outsider in the town of Johnson City, Tennessee. Ethiopian by birth and Indian by heritage, the movie makes it clear that he was accepted in the town only because of his education. But race is not the issue with this town, not the way the movie is framed. The issue is this new epidemic that has arrived in the form of young, gay men with AIDS. Men who were otherwise healthy and full of life begin to lose weight at a phenomenal rate, become too weak to go on in life, and eventually succumb to the disease.

The people around these young men are scared to death of what is going on. If you are too young to remember those days — and I’m not — you will see how people truly reacted to HIV and AIDS. They would not touch a person who was infected. They would not hug, kiss, or want to be around an infected person. Even Dr. Verghese’s wife asks him once when he gets home, “Did you wash your hands?” The stigmas and stereotyping are all there, and they are presented without judgment, more as the natural response of society to something that is scaring them to death — sometimes literally.

But it’s not just homosexuals that are seen to be affected in the movie. A heterosexual couple become infected when the husband has sex with men. He is dragged to the hospital by his wife and children and sheepishly admits to having sex with men and women. “I like sex,” he admits. Later, when the wife is told that both she and her sister are also infected, both from the husband, she is seen contemplating suicide. That is what I meant by being scared to death.

Dr. Verghese continues musing about homosexuality and what he is seeing all around him. It is touching because he seems to be trying to rationalize what is going on around him. We all do this. We see such horrors and unspeakable things through the news or in person and we try to tell ourselves that we, humans, are not really that evil. We can’t be. If we were, we would have never progressed as much as we have in this world.

In a post-HIPAA society, it is shocking to see how news of peoples’ diagnoses spreads through town. People are said to stand up in church and “out” their relatives with AIDS. Employees of the hospital are rumored to be spreading diagnoses to people in the community. When you realize that people who were diagnosed with HIV infection, or AIDS, were fired from their jobs, shunned by their families, or worse, you come to understand why it became necessary to have stronger privacy laws.

Somewhat humorous is a scene where a young man we meet earlier in the film has passed away. His sister comes to make sure that his body looks presentable for the funeral. The mortician is asked to put on socks on the body and returns with a silly-looking pair of rubber gloves that are more fitting for an electrician working with a high-tension wire. The sister remarks that the body is “pickled” and that there “is no bug in the world that’s going to survive that”.

We also see something that is still going on to this day: A family overriding the wishes of their dying relative while the relative’s helpless partner looks on. “We have legal authority,” they claim while the partner is brought to tears at the prospect of extending his beloved’s suffering. Without preaching, just by presenting the facts, we see how this is not the best thing for the patient, only for the family.

Threaded throughout the movie are scenes where the audience gets to see that unconditional love I wrote above about. When a gay man embraces his partner, both crying over the diagnosis, a nurse states that she wishes a man loved her like that. That embrace is powerful because people with AIDS at that time were shunned to the point that people did not want to be in the same room with them at times. Handshakes were questioned, and hugs were forbidden. Ignorance and fear, the most virulent contagions, guided people’s responses. Science and reason, the antidotes to these things, were set aside back then as they continue to be ignored today.

Yet there is hope, there is always hope. We see the hope in this young infectious disease doctor who is doing his best to inform the public on what HIV and AIDS are and what they are not. We see the hope in his staff who work with him and start to understand what is going on and what the best course of action is. And we see hope in the family members of those who are stricken with the disease and come to accept their relatives, love them, take care of them until their dying day, and become advocates in the community for those who are shunned and too weak to defend themselves.

If you are an advocate for public health, for social justice, for equality, then this is a great movie for you to see. The book goes into even more detail, of course, but the movie is powerful enough. When you see that the issues of those days are still here today, you can’t help but to want to rise up and fight it, do something about it. And we must.

We must.

To understand autism, you need to understand incidence and prevalence

In 2012, the CDC put out a prevalence study of autism in the United States. It changed the prevalence number from “1 in 110” to “1 in 88”. There were many who were alarmed at this statistic. They thought that the chances of a child being born with autism increased from 1 in 110 to 1 in 88. Well, they didn’t. This was only a rise in prevalence, not a rise in incidence. While the two are related, they are not necessarily tied to each other. That is, if one rises, the other one doesn’t have to. One can rise and the other can fall. Why?

It’s a little complicated, but I’ll try to explain it.

Let’s look at the definition of incidence. Incidence is the number of new cases in a population, per unit of time (usually a year), divided by the number of people at risk in that population. So, if your population is 100,000 and 100 people get the disease in one year, then your incidence is 0.001 or 0.1%. But what if we’re talking about cervical cancer? In a normal population of 100,000, only half of the people in that population — the women — would get cervical cancer. Men don’t have the right equipment for that. In that case, 100 cases in an at risk population of 50,000 is an incidence of 0.002 or 0.2%.

If you fully recover from the disease, then you move over to the “at risk” population again. If you don’t — because it stays with you forever or because it kills you — then you stay out of the at risk population. You could have 100 cases each year, no more and no less, and the incidence would continue to rise if no one recovers or your at risk population is not replenished by new births fast enough. In the example I just gave you, the population at risk for year two is 49,900. If you get another 100 cases, then your incidence is 0.00200401 or 0.2004%. It’s a small increase, but it’s an increase nonetheless.

So, remember this: If the disease is not curable (because it is chronic, pervasive, incurable, or deadly), then the population at risk dwindles if it is not replenished by births or immigration. Lower the denominator in incidence, and you will get a higher number. To decrease incidence, you either increase the number at risk or you decrease the number of new cases.

Now, let’s move on to prevalence. Prevalence is the number of existing cases in a population, per unit of time, divided by the total number of people in that population. That’s total population, regardless of whether or not they have the disease. So, if you have 100 cases of cervical cancer on year one, your prevalence will be 100 divided by 50,000, which is 0.002 or 0.2%. Year two, you get another 100 cases, and you will now have 200 existing cases divided by the same population of 50,000, which is 0.004 or 0.4%. Your prevalence doubled!

This assumes, of course, that no one died of the disease or that the total population stayed static through some means. In real life, population levels change.

In year three of the above scenario, you get another 100 cases, making it 300 existing cases in a population of 50,000, for an overall prevalence of 0.006 or 0.6%.

So, remember this: If a disease is not curable, then the prevalence will increase as long as there are new cases. Prevalence will decrease if the increase in population outpaces the new number of cases or the number of existing case decreases because of death or recovery.

Now, onto autism.

As far as science and medicine can tell us, autism is not curable. It is treatable. With the right interventions and depending on the level of severity of the autism signs and symptoms, autism is treatable. Plenty of people with autism go on to live happy and fulfilling lives. Again, it is not curable. Not at this time. So any new cases of autism will pile-on to existing cases and… Prevalence will increase.

Not only that, but the number of new cases per year can go down, but there will still be all those previously-diagnosed cases of autism which are still being added on to even if the incidence falls. Incidence would have to reach zero, the number of new births would have to continue (some countries have a negative birth rate), and people with autism would have to start passing away before the prevalence of the condition decreases.

Here are some theoretical numbers, as an example:

Note that there was a successful intervention in this example.

The column headings are self-explanatory, but let’s just go over them again for clarity.

• New cases – Number of newly diagnosed cases that year.
• Existing cases – The number of new cases for the year plus the number of existing cases the previous years. (Let’s pretend that there were no existing cases in 1999.)
• Incidence – The number of new cases for the year, divided by the population at risk.
• Prevalence – The number of existing cases (new cases plus existing cases) for the year, divided by the total population.
• Population – The total population.
• Population at risk – The total population minus the number of new and existing cases.

As you can see, we had a steady increase in the number of new cases from 2000 to 2009. From 2009 to 2015, the number of new cases declined. Appropriately, the number of existing cases continued to increase throughout because the condition is not deadly. (Again, this is theoretical. People with autism die from other causes, like the rest of us.) As you can see, incidence climbed along with the number of new cases until 2009/2010, then it began it’s decline. On the other hand, prevalence started its increase in 2000 and continued increasing to 2015. Also note that I increased the population every five years or so in our theoretical place (city, county, state) because that’s what populations in the United States have been doing. We don’t have a negative birth rate.

So, as cases dropped and population increased, incidence dropped. Because cases didn’t die, and the new number of cases outpaced the population increase, prevalence continued to increase.

On a side note, one of the criticism someone mentioned about HIV/AIDS treatment is that prevalence continues to increase. In their mind, HIV/AIDS treatment is not working if that particular measure of disease continued to increase. Can you see now why they were wrong?

Can you see why the prevalence of autism increasing from 1 in 110 (0.9%) to 1 in 88 (1.1%) is not a clear indicator that the number of new cases each year is rising? It’s only an indicator that people with autism are living and that the number of existing cases each year is outpacing population growth. For prevalence to decline, you would have to drop the new number of cases per year to zero and wait for the number of existing cases to drop on their own as people with autism get old and die.

That right there is what puzzles me when certain groups say they want the prevalence of autism to plummet. And their ranting and raving about an increase in autism signaling an “epidemic” of autism is also puzzling. Hopefully, it will be puzzling to you as well, now that you have seen how incidence and prevalence work.

Of course, this assumes that all things are equal when it comes to autism surveillance. But they are not. But that’s for another blog post at a later time.

By the way, here is the graph of the information in the table above, for those of you who are more visual:

Even with a theoretical, successful intervention in 2009, prevalence continued to increase. Why?

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”.