The Whole Truth About Autism

I am putting my foot down.

As the parent of an autistic child I hear a lot about vaccines and about half a million other things that people think cause autism.

I’m hyperaware of the attention autism gets in the media. So I know about the CDC’s new stats on autism rates. I know about the debate on whether the increase in autism is due to more awareness and diagnosis or more actual occurrences. (Personally, I find the former to be a serious factor, though who’s to say how much.) And I see all the articles that come out week after week about the millions of things that are linked to autism.

There’s a recurring problem here. Valuable research is done. Research is disseminated. Information is reported. Articles are read. Findings are spread. What starts in a lab ends up in a Facebook status. What starts as truth ends up as mistruth in something like a child’s game of telephone. Along the way, piece by piece, truth fades away in favor of headlines and pageviews and gossip.

It’s getting just plain stupid. I’m starting to suspect these articles have nothing to do with serious research but with a search for traffic and hype, an attempt to ride the wave of a trendy topic as concerned parents read every horror story they can find.

A particularly egregious one came up recently. This one doesn’t just cite some random correlation. This one is just plain making things up. The problems here just pile one on top of the other. So let’s consider it piece by piece, a case study in how real research becomes misinformation.

Part One: Research

It starts with scientists. It starts with research. They write up their findings and publish them in a peer-reviewed scientific journal. In this case there are several papers published over a few years about chemicals and their link to brain development. They cover a wide variety of issues and present a wide variety of conclusions. All of them suggest further study.

Maybe they have bad methodology or use statistics incorrectly. Only a few people would ever know the difference. That’s not my concern today. Bad science is one thing, but bad information on good science is another. So let’s assume we have good, solid science in this research.

Part Two: The Conference

Scientists and researchers with similar interests get together and discuss their findings. It’s not that difference from any other conference. There are panels and presentations.

Part Three: The Op-Ed

Next, a group that works on environmental hazards for children publishes a paper. Not a research study but an op-ed in a peer-reviewed journal. In this op-ed they review the conference from Part Two and encourage the study of environmental factors and their relationship to neurodevelopment disorders. Autism is one of many neuro-ish disorders and is mentioned by name in the piece and its title. It’s unclear to me why they zero in on autism. They have a couple vague pieces of evidence that are autism-specific, but the vast majority of what they’re looking at has never been demonstrated to have any kind of relationship to autism, not even a correlation.

Problem #1 is the unnecessary autism name-checking. Problem #2 is much worse, it’s the list of 10 chemicals they suggest for future study. The list itself isn’t a bad idea, I guess. They’re suggesting places for potential research, which certainly needs to be done. But it does reek a little bit of the kind of thing magazines do, you know what I mean, 10 Ways To Get Your Guy All Fired Up! and such. Still, it’s their prerogative.

So let’s examine their evidence for these suggestions. They cite at least one paper for each of these chemicals. I checked them all. The vast majority of them have never shown any connection to Autism (or even ADHD, another diagnosis they name-check). In fact, many of them show that with exposure to these chemicals, the outcome differentials between exposure and non-exposure is 5 IQ points.

FIVE IQ POINTS. Statistically significant? Perhaps. Practically important for a parent? No.

IQ itself is a strange and vague thing. And 5 points isn’t going to move your super-genius down to the level of a normal person. They’d still be a super-genius. And adding 5 points to someone with severe mental defects isn’t going to make them normal, either. It’s hard to imagine what difference you’d see between two people whose IQ’s are 5 points apart.

Such statistical differences may well be a sign to warrant further study. And they may be a sign that these chemicals affect neurological development. But it’s getting a bit ahead of ourselves to say they are suspected of being tied to autism. Many of these papers are in areas of research that are just beginning. Many of them involve homogeneous groups (for example, all the participants are Mexican-American migrant workers) which makes issues of genetics and heredity very difficult to account for. Many involve parents self-reporting by filling out surveys rather than having the children examined by professionals.

Let’s be fair. These are the very beginnings of research. You’ll need to do all sorts of rigorous testing and consideration to make real connections. Of course more research is needed. And it’s important that we keep that in mind as we move forward.

(Though, of course, no one else will.)

Part Four: The Press Release

The op-ed is about publicity so it’s the beginning of the problem. But it gets worse. A press release comes out with the list of ten chemicals and already the twisting starts. These are chemicals suggested for further research, but suddenly they’re a ”List of the Top Ten Toxic Chemicals Suspected to Cause Autism and Learning Disabilities.” This, unsurprisingly, is the headline you’ll see all over the internet when news organizations report on the press release. Already it’s turned from suggestions for research into a watchlist.

It gets worse. The press release has this second headline:

The editorial was published alongside four other papers — each suggesting a link between toxic chemicals and autism.

No, actually that’s not at all accurate.

Let’s start with the first paper, which examines the possibility of a connection between maternal smoking and autism. What’s their conclusion?

The primary analyses indicated a slightly inverse association with all ASDs[.]

What does that mean? Among the autistic kids vs. regular kids, there was actually LESS maternal smoking in the autism group. The paper does point out that when it comes to “subgroups,” for instance high-functioning ASD or Asperger’s, there may be a possibly positive relationship. But there are so many caveats I can’t even get to them all. Let’s just take this one:

The ASD subgroup variables were imperfect, relying on the child’s access to evaluation services and the documentation by a myriad of community providers, rather than direct clinical observation.

This means that when they’re saying some groups of ASD kids may have this relationship, they didn’t actually classify these kids. They never saw these kids. They’re relying on data collected by other people. Not even by a consistent set of people. It comes from 11 different states and who knows how many providers. Who’s to say how accurate any of it is. And who’s to say whether these kids are correctly classified at their particular place on the spectrum.

So take all that with a whole jar full of salt and you’re still looking at, overall, no connection with smoking. If anything, the data would indicate smoking has LESS autism rather than more.

After this there are 2 papers on the same chemical. One of them does not contain the word “autism” anywhere. (One of its references has it, but nowhere does it appear in the text of their paper.) The second paper is better. It focuses on the chemical’s effects in particular processes which have been linked to autism. This is very micro-scale science, there are no people involved, just cells and chemicals. It’s important research, but there’s a long stretch between cellular interactions and a person’s diagnosis. It didn’t involve any analysis with autistic individuals. This is certainly the most useful paper of the bunch by a long shot, but it still just sets the stage for further research.

The fourth paper is a review. That means it asserts no new information but summarizes the research on a particular issue, specifically pesticides and autism. Technically I suppose it does assert a link, but none of this is new information.

So I think we’ve pretty much destroyed the headline in that press release. There were not 4 articles suggesting a connection between chemicals and autism.

Is it likely that the writers who take this press release and write articles on it are going to read the papers it cites? Are they going to realize that what they’re saying isn’t actually true? They should. Of course they should. But they don’t.

This list has chemicals suspected of being tied to neurological development. And we should just leave it at that. It’s not that they shouldn’t be studied. They should. But we shouldn’t be throwing out buzzwords like ADHD and Autism when the research doesn’t show any firm data.

Part Five: News Articles

This is a process, though. First research, then op-ed, then press release and finally news articles. So what’s the headline of our news article? “Top 10 Chemicals Most Likely to Cause Autism and Learning Disabilities.” Guilty of serious fearmongering, no? A more accurate title may be: Researchers propose list of chemicals potentially tied to neurological development for further study. But I doubt anyone’s going to write that.

The article itself, to be fair, is full of caveats. The reasons for the increase in autism are “controversial.” There is a “gap in the science.”  But then you get a sentence like this:

But clearly, there is more to the story than simply genetics, as the increases are far too rapid to be of purely genetic origin.

Clearly? Clearly says who? What source says it’s too rapid? The author certainly isn’t a reliable source. She is Robyn O’Brien, a writer for Prevention who posted this article. Her scientific credentials are nonexistent. She is a former financial analyst who now writes about the food industry. She has an MBA, and her undergraduate was in French and Spanish.

Full disclosure: I have a B.S. in Biochemistry, but I feel I’m unqualified to write this article. I’d much rather it be written by someone with a PhD. I’m married to a PhD, which has given me a lot more exposure to science since leaving school, but I fully acknowledge that I shouldn’t be the one doing this. I know how to read a scientific article and examine its conclusions, but I certainly am not someone who can tell you if their methods and analysis are correct.

But I’m talking because there aren’t enough people talking about it. Because the PhD’s aren’t generally science writers. They are scientists. They write about their research in journals, not in the newspaper. And certainly not on a blog for a healthy living magazine.

The author goes on to restate the inaccurate subheadline of the press release verbatim.

In the end she suggests things like buying organic produce, opening your windows and buying BPA-free products.

This is part 5 of our process, but it’s where many of us start. Many of us will only read this article and not the press release or the op-ed or the research papers. Most of us aren’t qualified to do so, all we have is this article. Well, we have that and what other people tell us. Which leads us to our next step.

Part Six: Readers

The article is frustrating, but I can only get so mad. She is saying what the scientists told her to say. She has even included some cautionary language. The problem is that when writing for laymen, you have to be careful.

And with AUTISM? You have to be really careful. Just for you I’m going to venture into the comments to this article to show you how people have responded.

–How about we quit injecting our kids with aluminum, formaldehyde and the rest of the toxic stew that they call vaccines — we bypass every natural defense our bodies have (skin, saliva, stomach acid) to put these things directly in the blood stream.

–Thank you Robyn for always providing sound information to continue guiding our decisions.

–What about heavy metals like Arsenic that are trapped in soils that our “organic” brown rice is growing in to be made into brown rice syrup to sweeten organic foods and baby formula? Not to mention the reports coming in regarding the radiation and contamination from Fukushimi that has reached the west coast an is spreading across this country in the produce and even the pollen…

–Unvaccinated children are some of the healthiest little people on the planet. As far as the Autism link, who really knows but why risk it.

–Thank you for this information. It confirms to me that we should keep doing what we are doing. It also helps me to enforce our no shoes policy in our home. Some people are so disrespectful and just don’t take them off and I hate to sound like a nag and ask even though they already know its what we prefer.

Thankfully there are some people in there who take the writer to task, but how is a reader to trust any one commenter over another? You have no way of knowing from a comment what someone’s experiences or qualifications are.

There’s a reason we need responsible scientific reporting. I’m all for the open dissemination of information, but I’m also aware of what happens when people read something they don’t understand.

autism FB The Whole Truth About Autism

I encountered this FB conversation the other day. Usually I overlook such things but I could not help myself. I jumped in. I tried hard to be polite and present facts. When all that was over, no one was convinced. The response?

autism FB 2 The Whole Truth About Autism

Enough articles on vaccines and people are scared even without evidence. Enough headlines and people don’t bother reading articles. It doesn’t matter how much is retracted or debunked, the damage is done.

We need responsible science reporting. We need responsible reporting, period. I’ve seen plenty of lazy articles on Supreme Court opinions that lead me to read the opinion myself only to realize that they’ve stated the conclusions all wrong.

I don’t want to go on all day, but I do feel like it’s important for us to put our foot down and demand better.

We aren’t all scientists. But we can ask for science writers with the appropriate qualifications. We can ask for links and citations in their articles. (I spent quite some time tracking everything down for this post, and luckily I’m relatively familiar with looking up scientific articles online.) We can ask for articles that show failed connections. It doesn’t all have to be “Autism linked to X” there’s plenty of “Autism not linked to Y” that happens in these studies but you never see that, do you?

As for us laymen, we have to find our own trusted experts. Ask your pediatrician. And if your pediatrician’s not qualified (most of them are MD’s but not PhD’s) ask them if they have a trusted source. Track down specialists in Autism with PhD’s and ask them what they think of the research. Find reliable books and articles and spread them to your friends. We can’t necessarily do a lot, but we can do our part to stop the spread of misinformation and demand better.

For another article on how to approach science writing, check out this post at The Thinking Person’s Guide to Autism.

14 Responses to The Whole Truth About Autism

  1. Hannah says:

    Just… wow. Freaking brilliant post, Jess. I’m sharing it all over the place. Because this needs to be heard.
    Hannah recently posted..the death of music

  2. Elycia says:

    Nice post! I too spend an inordinate amount of time looking for the actual journal article for popular news stories…and they never are as simple as the headlines. And if your doc isn’t up to date on that research study (it’s impossible to follow it all) we should at least be able to walk you through the conclusions of the original journal article, especially if you send it to us in advance of your appointment (perhaps with some cookies). :)

  3. Alice Callahan says:

    Thank you for writing about this! We need more people like you putting their foot down, and I completely agree that we should demand more of writers covering these stories and more of ourselves as consumers of information. I see a lot of sharing of articles like these and many of the same responses you found. And it is hard to know how to respond sometimes, because I feel like my skepticism is viewed as being uncaring in certain groups. I’m grateful for the hard work of researchers, and I want us to gain a better understanding of autism and the effects of chemicals as much as anyone. I just think we deserve accurate information about what we know and what we don’t. Thanks again, great piece!

  4. If By Yes says:

    I 100% agree with you. I am particularly pained by “news” articles that take a published correlation and turn it into causation. My particular favourite was an article about how eating more carbohydrates CAUSED your grandfather to have diabetes, because a study showed that people who ate higher carb diets were more likely to have a grandparent with diabetes *headdesk*

    Perfect Husband takes Jenny McCarthy books out of the Parenting section and puts them in Fiction.
    If By Yes recently posted..And how was YOUR weekend?

  5. Karl Hamand says:

    Well said! We also have trouble separating the good information from the junk science (or in some cases, just junk). Do you have any trusted sources of information on Autism you could recommend? Our second was diagnosed on the Autism spectrum in Nov 2011 and we (and by “we” I mean Amy) have spent a lot of time trying to figure out the best therapy/schooling for her.

    • Jess says:

      Boy, it’s hard. I admit I spend more time ignoring information than I do investigating it. Especially when it has to do with causes. And there’s so little research that gets put out there about treatment and therapy. We use ABA for Graham and it’s worked wonders, but it doesn’t work for every kid. We went that route because of our Developmental Pediatrician’s recommendation and we’ve been fortunate enough to have great therapists.

      How old is #2? If she’s under 3, I’d definitely contact Early Intervention. If she’s over 3, have you had an IEP with your school district yet?

      And email me any time, my friend.

      • Karl Hamand says:

        Mara is 3 and was diagnosed back in November. She is currently attending PPCD at the public school (5 days a week) and speech and occupational therapy (2 days a week). I’m glad to hear that you’ve had good experiences with ABA. Mara will be starting ABA really soon and we are hopeful that this is the place for her.

        I think we are on a good path for now, its just hard to hear the truth through all the noise.

        Thanks for your post! I’ll be checking back!

  6. Love this post. Even as a (currently) non-autism parent, my background in health care makes me furious when I see these things. And frankly, my pissi-ness points to the actual researchers who often don’t really care about finding out an answer but just jump on the “hot issue” bandwagon so they can get published, promoted and written about, which undermines true medical research. I know it probably took you awhile to write, but so happy when we are passionate about something (for me it was my recent MaterniT21 post) we can write and spread REAL information, rather than pop info. Can’t wait to share.
    Charlene @CharChronicles recently posted..What to Get Mom for Mother’s Day

  7. Amy says:

    Hi Jess. It was a total fluke that Karl came about your blog! He forwarded it to me and I love it already. He’s right, I have done a lot of research and there is so much garbage out there. I am not at all interested in causes, just help. Mara is 3 1/2. She currently receives speech and occupational therapy. She is about to start ABA. We’re not sure how much we can afford and insurance doesn’t cover it at all. We’re hoping to do as much as possible over the summer. It seems that other states (I’ve read wonderful things about Massachusetts) have much more to offer in the way of services than Texas. I am just desperately looking for a place to go to with all of my questions and I can’t seem to find what I’m looking for. I can’t seem to see through all the garbage.

    • Jess says:

      Amy, insurance is tough, isn’t it? But at least it’s starting to be covered. The school district could also potentially step in with services if she has an IEP. Graham will be getting 10 hours of ABA a week at school, but I’ve heard of other kids who get ABA covered by school at home. Of course, I also know lots of people who go to private providers.

      A few ideas for resources. First, our Developmental Medicine center sent us weekly emails after our diagnosis with lots of different topics and links. Here’s the page that has all the messages together. I found them useful.

      Also, I’ve found most of my help and support through other bloggers and autism parents. The online community is amazing. Hopeful Parents is a good place to start. If she has any sensory issues, the SPD Blogger Network is great. I also found a lot of people on Twitter. If you look under the #autism hashtag there’s great stuff. And many of the parents on there have lists of other autism parents. Here’s a couple:
      https://twitter.com/#!/xtremeparnthood/autism-special-needs
      https://twitter.com/#!/SherriPizza/autism-parents
      https://twitter.com/#!/householdsix/autism

      We’ll definitely have to be in touch next time we’re down in Austin!

  8. All too true. I don’t know what the solution is, though. I hate to say it, but at least here in America, the average high-school graduate does not have the critical thinking skills to even be aware of these issues, much less respond to them appropriately. At this point, I almost wish we could forbid anyone other than scientists to write popular media articles on scientific matters.

  9. [...] time Jess talked science, she talked about Autism research. Who knows what she’ll talk about next time as this whole series is kind of [...]

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