Tag Archives | science

Dear news media, this is how you fail the autism community so badly

The autism community’s biggest enemy, by far, is the news media. How so? Well, first of all they report the “terror” of autism, the “suffering” of autism. Secondly, they take any report that says “We put X and Y in a room together and found a Z% correlation” and create sensationally outrageous headlines such as “Z is caused by X!!!! Your children are doomed!!”

If you are not a part of the autism community, I can understand how this must appear to be an over exaggeration. If you are in the autism community, thank you for recognizing that it is, in fact, not an over exaggeration.

To give you two prime examples of how the news media agencies fail us, we only need look at what is happening this week.

“Significant” Link

Study: ‘Significant’ statistical link between mass murder and autism, brain injury” – http://www.washingtonpost.com/news/morning-mix/wp/2014/05/21/study-finds-significant-portion-of-mass-murderers-and-serial-killers-had-neurological-disorders-including-autism/

This article names all sorts of serial killers that you either hate or will hate after reading about them, names like Adam Lanza, Seung Hui Cho, Jared Loughner and Jeffrey Dahmer. Having just come off the headline of “significant statistical link between mass murder and autism”… can’t you just feel that emotion taking over? 

Oh wait, we skipped this one minor paragraph tucked away in the middle somewhere that has little importance… it’s this one:

The researchers stressed the study is “clearly limited” by the “anecdotal and speculative” nature of some of the published accounts. Lead researcher Clare Allely, of the University of Glasgow, emphasized the study did not suggest those with autism or Asperger’s are more likely to commit murder. “We’re not saying people with autism will be serial killers,” Allely said, adding “it’s way too early to make any statement like that.”

Hey wait, that does seem important, doesn’t it?

To me, a more appropriate headline would have been “Anecdotal and speculative information researched on autism and mass murder finds it’s way too early to say people with autism will be serial killers”.

Well, maybe not, it’s a little long and granted, it doesn’t pull in the readership that “significant link!!!” will.

Now, in my own research, I discovered that the number of homicides in the US between 2000 – 2010 was 165,068. 

This week, one person with autism plans a murder and suddenly we’re having studies about there being a potential link? Where are the studies that say “hey, 165,000 murders were by people that had no disorder. Could be a significant link!”?

Bullying Autistics Leads to Murder

This second bit of news also bothers me on another level.

Santa Barbara Shooting Suspect Calls Loneliness ‘Darkest Hell’” – http://abcnews.go.com/US/santa-barbara-shooting-suspect-calls-loneliness-darkest-hell/story?id=23855994

In this article, they write

“Schifman said Rodger was diagnosed as being a high-functioning patient with Asperger syndrome and had faced bullying through much of his life as he had trouble making friends.”

Now, I talk to autistic children every single day and at least 2-5 of them each week that feel like committing suicide due to the amount of bullying they are subjected to.

There are literally hundreds of autistic children dying each year due to bullying.

Why?!!? Why are there 100’s of children committing suicide due to bullying each year and no one cares?

But 1 child plans to commit murder due to bullying and suddenly this is national coverage? And autism is a big part of the story?

This is heartless and devastating to those of us with autism, those of us in the autism community and to your audience in general.

Stop Hurting Us

Stop Hurting Us

You Are Hurting Us

Listen, I understand that you need to get enough ratings, you need enough of an audience to “rate” against your competition. But please stop!!

I am begging you, I’m am pleading with you and I am insisting that you stop making autism out to the bad guy.

We are not mass murderers any more than non-autistics. We are not suffering any more than anyone else with depression or bullying. We are not this evil force that you paint us out to be.

We are children, adults, parents, friends, neighbors… we are your brothers and sisters.

You need to understand, you are hurting us. You are causing the suffering that you report about by reporting the way you do. You have become the bullies and you are bullying us.

Stop the sensationalist headlines. Stop burying important facts. Stop singling us out of a crowd of thousands and saying we all must be like that one in the crowd. Stop making us that thing to be feared.

Stop hurting us. Please just stop hurting us.

If you can’t find it in your hearts to start helping us, at least, please, stop hurting us.

Comments { 17 }

Disgusted and Offended by some in the Autism Community

I pride myself on being able to exist on both sides of the fence… not just straddle the fence, but to have my feet planted firmly on each side. But sometimes, someone or some group comes along and says something that really makes me seriously question my resolve.

I understand where the tensions, the frustrations and even the hatred can come from when people begin arguing over what they feel is best for their children. I also understand how hurt people can be when they feel violated.

However, understanding it does not mean that I feel they are validated in making some statements or in taking some actions… such as chemically castrating children in an effort to cure Autism. That’s not ok.

When discourse fails, make them your enemy

So one group has recently been quoted as saying:

“We need to get militant, and I mean in a way that scares those in power. You know what I’m talking about.”

I am hoping that this is just strong wording to make a strong point but still, really… do we need military terminology and “you know what I’m talking about” (nudge nudge, wink wink) insinuations?

What exactly is it that you’re talking about? Combat? War? Is it really logical that if someone doesn’t do as you ask, that you become their enemy? Will that make them listen to you? Probably…. not.

Those in power” are not your enemies. No matter what you think. And if you want people to work with you, maybe getting “militant” is not the best option.

If you can’t convince them, call them baby killers

July 10th must have been a particularly bad day for this person, that tweeted not once, but three times:

autism divide 1

Immaculate huh? My guess is you just made that up rather than use a word that any sane person would have used.

autism divide 2

Is that so? I support autism the way a father supports a child that is growing up in a society and school system that is not yet equipped to understand or accommodate him. Granted, all of that doesn’t fit into 140 characters, I still can’t help but think you were going a different way with your meaning.

autism divide 3

I’m not sure I have the time nor web server space available to explain all the ways this is just so wrong…  but I have to question, what exactly would you propose? That all research just halt, ignore any findings that suggest genetics as a cause and declare environmental factors as the sole cause?

Oh wait, that must be it. You’re so certain that if they do discover the genes, if they do discover an actual definitive cause… that parents may get the option of detecting it in their unborn children and thus, have an abortion. Which means that you’d rather silence science and avoid the (possible) truth for fear of abortions.

Because if you truly cared about science or the truth or our children… you’d want the answers. 

By the way, just to finish the point, abortion is not the “end game.” But there’s very little point in explaining that. Those who know it, know it and those who think it, can’t be convinced otherwise.

So disappointed

I just can’t believe that people write this… I more so can’t believe that they not only share it but try to get others to think likewise… and the absolute worst is that this is from an organization that is in the position of influence over parents.

I don’t care if you believe vaccines are the culprit, I don’t care if you believe doctors really are out to hurt our children….. statements like this are just not ok.

There are no “camps”, we’re all on the same side!! We’re not at war and no one is out to abort children. We can’t just stop science because it might result in an answer that we don’t want to hear.

If statements like these were made by individuals as an opinion, I’d just roll my eyes because as I said, I can understand what drove them to it. I don’t approve, but I understand.

But because these types of statements are made by organizations with actual influence over people, I have to voice my objection to this. It is not acceptable to encourage others to think this way.

What are your thoughts??

Comments { 22 }

“May increase the risk of autism” studies versus real scientific research

Weird Science

Autism is still very much a mystery, I’m fairly certain that we can all agree on that. Some people may think they have it all figured out (anti-vaccine extremists) but for the most part, everyone admits that there is still a lot to learn.

May Increase The Risk of Autism

As such, study after study seems to hit the news wires with the tag line “may increase the risk of autism” and collectively, the entire autism community rolls their eyes.

Some of these studies in the last year include “Living Near a Highway May Contribute to Autism Risk“, “Jaundice in newborns may be linked to autism“, “Sibling spacing may be tied to autism risk“, “Early Prenatal Vitamin Use Prevents Autism” and the list goes on.

You have to understand how these studies come about. Researchers pick a year, or several years, go back through medical records of children born during those years, determine which ones have been diagnosed with Autism and find something that more than 50% of them have in common.

If they find that 55% of children living close to a highway had Autism, then they can release a news story saying that a study was done that determined that living close to a highway increased the risk.

There’s several problems with this.

  1. They aren’t counting the children that have gone undiagnosed.
  2. A lot of information could be out of date or simply incorrect. Historical records in studies make for a huge margin of error.
  3. When you’re looking for a commonality, you can find virtually anything.

Allow me to clarify #3… let’s say that they could find out if a bird was flying over the house at the moment of conception in 51% of Autism cases. This could result in a study stating that birds flying overhead during sex could increase the risk of Autism.

Luckily, there’s no way they could check that but you know what? It’s possible that it did happen.

Does that mean it really increased the risk? No.

Real Scientific Research

Ah, science. You know, that stuff you see on television where they mix chemicals, dissect and examine the insides of animals and people… you know, science.

The most recent real research to be released states: “Gene Expression in the Brain Offers Clues to Autism’s Roots

This study was done on actual children post mortem (after they died), where they actually opened up and investigate actual brain matter of children with and without Autism.  If you don’t wish to read all of it, here’s the summary:

Working with the brain tissue of youngsters after their death, Geschwind and his team found that compared with nonautistic children, those who had the disorder showed a marked drop in gene expression in two areas of the cerebral cortex, where higher-order processing occurs — the frontal lobe, which plays a role in judgment, creativity, emotion and speech, and the temporal lobe, which is involved in hearing, language and the processing of sounds. These areas have been implicated in autism before.

In addition, Geschwind found that healthy brains showed distinct differences in the level of expression of some 500 genes between the frontal and temporal lobes. But this difference in expression was missing in the autistic brains; the features that would normally distinguish the two regions had disappeared, Geschwind said.

This is actual genetic and scientific proof that the brain of children with Autism are different than those without. Furthermore, it goes on to say:

It turns out that even in the womb, the fetal brain begins to show differences in gene expression between the frontal and temporal lobes, suggesting that the developmental abnormality associated with autism may develop then too.

This suggests that jaundice and vaccines and other “after birth” factors likely have no effect. It does not have much of an effect on other studies that base their focus on the mother during her pregnancy.

Even still, it does show that it is a genetic disorder that is not just something that you can force out of them through discipline or shock therapy.

Some other notable scientific research includes “Early Brain Overgrowth Linked to Autism” and “Researchers Reveal 18 Novel Subtype-Dependent Genetic Variants for Autism Spectrum Disorders“.

Again, looking at real subjects instead of just comparing old data, looking for commonalities.

What do we believe?

I’m not saying that we have to ignore the studies base on researching data and basing conclusions on those findings… those studies have real value and they’re done for a reason. However, as we in the Autism community can see, they seem to be grasping at straws.

It’s a shot in the dark approach at playing with odds in a crap shoot who’s results may or may not be accurate. “May increase” means it might not, and “increase risk” means that there’s still a 0% to 100% chance. That means there are lots of people who’s children have Autism that go against what the conclusion of the study states.

Not very comforting.

However, people that know nothing about Autism nor how these studies are done will read them and base their future pregnancies on that information. They’ll move, they’ll take their vitamins, they’ll make sure not to have a child within a year of the previous one… and their child might still have Autism.

They’ll wonder what they did wrong. As if it was their fault.

I share these studies and stories on Twitter, Facebook and here on this blog because, as I said, it’s valuable information. You and I need to know about them just in case someone asks us “hey, I read on CNN, do you think your child has Autism because you lived close to a highway?” and you’ll need to have an answer because your answer might affect their future decisions, and their future information sharing with others.

Keep in mind though, that maybe some of these studies are right. Maybe the data actually does add up and it does make it more likely that your child will have Autism. Unfortunately, there’s just no real way to know which are wrong and which are right. Just because you and I beat the odds, it doesn’t mean that it didn’t make it more likely. Even though I compare statistical analysis to “real science”, it is real science too.

Until they have definitive proof one way or another, we have to keep an open mind and inform others to keep an open mind. “May increase risk of” is a very very vague statement that is very scary to a lot of people even though it really means not much at all.

Don’t avoid them, don’t avoid the questions and don’t get frustrated with them either. Read them to know them and answer the questions honestly.

Comments { 6 }