10 things to remember when writing about autism science

Oct 22 2012 Published by under Uncategorized

[This post is a slightly amended version of a post that first appeared on my personal blog.]

Many popular science books have a narrative that may not necessarily stand up to precise scientific scrutiny. Indeed, a criticism leveled at many such books is this lack of care in qualifying scientific results and interpreting them with caution and caveats. It's an understandable instinct. Think about the good storytellers you know. How much care do they exercise in avoiding hyperbole or sins of co-mission and omission in telling a "good" story? Some writers of popular science books commit these sins to tell a good story, too. Others do not, yet their work is popular and well received. It is possible to be accurate and cautious and still tell a rousing tale.

The problem with writing about science, though, is that science isn't just a story. It's about facts and open questions, and it's almost never defensible to write as though a door has closed, a box has been checked, or a mystery has been completely solved. We owe it to readers to avoid simplification to the point of a sin of omission and to avoid overinterpreting to the point of hyperbole.

When it comes to writing stories about health and medicine, the stakes climb. With these stories, we're not writing only about scientific findings. What we write is also about people. Many writers seek a narrative hook, a personal story that frames the rest of the piece. I can't even count the number of autism-related stories that open with a (very real) tale of woe featuring an overwhelmed or traumatized parent talking about the grief and horror of having a child with autism. This tactic catches the reader--and happens to be one that the largest autism nonprofit in the United States also employs--successfully tugging at heart and purse strings and attracting mouse clicks. But this tugging and this narrative approach are so frequent in such stories as to be near-cliches, and they do few favors for the autistic people these stories are really about.

The presentation of autism as a monster to battle or a stalker out to destroy your life has repercussions that some autistic adults argue go beyond an unfair and painful characterization of what they believe is Who They Are. News stories about autistic people whose parents and caregivers have murdered them often carry a clear attitude of "autism is so hard, no wonder they got killed." When every news story you read describes autism as a horrific affliction and all of those with it as suffering, when mainstream news organizations persist in focusing only on what parents have to say about autism rather than talking to autistic people, when stories focus on preventing autism--with worms, no less--autistic people, real, living, breathing people, feel pain and get angry and argue that even if they are nonspeaking, they can be perfectly capable of communicating for themselves.

If you are someone who writes about health and medicine and who covers a story related to neurobiology--particularly autism--please consider the following 10 suggestions. They might help you avoid the pitfalls of hyperbole and poor interpretation and causing pain to autistic people.

  1. Interview an autistic person for insight whenever possible. If you need suggestions for leads, feel free to contact me. If you were writing a piece about any other human condition, would you talk only to parents or relatives of people with that condition if the people who have it could communicate for themselves?
  2. If a researcher claims to have "solved" autism, please exercise healthy skepticism and follow up with someone who doesn't have a dog in the hunt. Of all of the neurobiological conditions, autism may be the most variable. It's extremely unlikely that any one research path or group or hypothesis will explain all autism. Don't ride that wave with them.
  3. Don't generalize. Stick with what the findings say, not what the discussion or the conclusions or the authors or the news releases say. Have an ear for when someone is overgeneralizing. Example generalization: "X causes autism." What causes autism has not been established, and the causes themselves--and how they work--are likely going to form a very long list. We are still very early in formulating that list, much less what the items on that list do.
  4. Don't mistake correlation for cause. When a study reports a "link," that term usually means a mathematical relationship: When X was more frequent, autism was more frequent." That doesn't mean that X causes autism. It doesn't even mean that X has anything to do with autism.
  5. Don't overstate the meaning of risk. Risk is a scary word, although we all live with the 100% risk of dying someday, regardless of what other risks we face. When a study result refers to "increased risk," look at the numbers. If they say that the presence of factor X was associated with a relative risk of 2.1, for example, then the population with factor X had twice the autism compared to the group without that factor. If the average risk of having a child with autism in the absence of that factor is 1%, then this particular factor was associated with about a 2% risk. And relative risk applies only for that study--it does not tell you what the actual risk is. 
  6. Keep in mind that even these links don't imply a true causal relationship. They're just math associations. A famous example of how these relationships can end up being misinterpreted is the protein CRP and heart disease. Because of a mathematical association between the presence of this protein and the occurrence of heart disease, researchers thought for a pretty long time that CRP might cause heart disease, and drugs were even targeted to lowering its levels. Turns out, it doesn't cause heart disease, so the drugs were no use. Instead, it's either a side effect of heart disease (reverse causality) or just higher because of some indirect influence. Now, take any recent X factor you've heard is "linked" to or "causes" autism and substitute it and autism into the above story to understand how unpromising correlation can really be.
  7. Be aware of how you write about autism and of the fact that autistic people may read what you're writing. How you describe autism is, for those readers, describing themselves, their very being. Please try to avoid lapsing into the parlance of affliction, suffering, disease, desperation for a cure, war, and despair or comparisons of "low" and "high" function. A good science geek knows that function is often a matter of environment, not a constant measure. Although some autism parents may disagree, one key to making this world a better place for autistic people is for society not to see or treat them as unhearing, nonverbal, illiterate rocking obsessives who don't understand what people are saying about them. Unlike neurodegenerative or fatal diseases, autism is not universally perceived or lived as a negative condition, and it's important to remember that.
  8. If the study in question is about mice, never talk about how the results will lead to a therapy or a cure or write about the mice as though somehow, they are just tiny humans with tails. Mice have misled us before. They are only a way to model what might happen in a mammal sorta kinda related to us. They are not Us, otherwise we'd live in tiny, crowded places, having 10 children at once and ignoring them when they grow fur, and this autism thing wouldn't be an issue.
  9. Don't use phrases like "gene that causes autism" or "gene that is linked to autism" or "faulty gene" or "defective gene." What you really want to say is "gene variant" or "version of the gene." There isn't an "autism" gene; there are gene changes that might be linked to autism.
  10. Also avoid referencing "environmental factors" without providing some specific examples. Those examples should not be "chemicals" or "toxins," which are vague, meaningless, and stupid. Established environmental risk factors for autism include parental age and extreme prematurity. Try those, but handle with care.

Finally, I know deadlines are tight, but never take a paper author's interpretation as The Final Word. Try to find someone not connected with the work and get their comment. Journalism 101, I know, but it's surprising how often articles do not include this kind of balance. By balance, I don't mean "gives the other side." I just mean, "possibly modulates enthusiastic author's overinterpretation or overselling of results and their significance." 

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Turning trauma into story: the benefits of journaling

Jun 30 2012 Published by under Uncategorized

For me personally, June has proven to be a rather disappointing and fruitless month. Just when things began to look brighter, I was involuntarily assigned to be the middle vehicle in a double fender-bender two days ago, and my car now needs almost $1,000-worth of repairs. And as a perfect metaphor for the crappiness of the past month, for whatever reason I was not paid my stipend yesterday for the month of June.

I don't often like to talk about my sour feelings with other people because a.) I'm bad at it, and b.) I have another outlet.

Everyday for the past 12 years (save for a few angsty months in 8th grade), I've been writing in a journal. A good, old-fashioned, hardbound, acid-free journal. Most entries are about the frivolous happenings of the day at school, but as I've gotten older, they've increasingly helped me outline my thoughts and feelings while keeping my head on straight.

Feeling so low, I journaled the night before my car accident, listing ten qualities I liked about myself. Remembering what I wrote as I spent the next day at the body shop and on the phone with the police and insurance companies is, I believe, what kept me from simply bursting into tears and throwing up my hands in defeat.

Writing, as many would probably agree, is therapeutic, and studies in the past two decades have explored the health consequences of secrets, expressive language, and the before-and-after physical and psychological symptoms associated with trauma—an area of research referred to as "writing therapy."

Dr. James W. Pennebaker, a social psychologist at the University of Texas at Austin, is considered to be the pioneer of writing therapy. His basic paradigm for expressive writing experiments remains widely used today:

“For the next 4 days, I would like you to write your very deepest thoughts and feelings about the most traumatic experience of your entire life or an extremely important emotional issue that has affected you and your life. In your writing, I’d like you to really let go and explore your deepest emotions and thoughts. …Don’t worry about spelling, grammar, or sentence structure. The only rule is that once you begin writing, you continue until the time is up.”

Many who have followed these simple instructions over the years have seen dramatic changes in their lives. Says Pennebaker, "When people are given the opportunity to write about emotional upheavals, they often experienced improved health. They go to the doctor less. They have changes in immune function. If they are first-year college students, their grades tend to go up."

When we experience a traumatic event or major transition in life, our minds function to process and understand what's happening to us. Our thoughts can consume us, keeping us up at night or distracting our performance at work or school.

Translating these experiences into language, however, gives us a physical piece to contemplate, perhaps allowing us to better "grasp" what's going on. In a different but related theory, the ability to construct a story from our experiences may gives us the opportunity to detach ourselves and approach our situation more objectively. Stories may also be better stored in the brain as memories, rather than what may otherwise be a random amalgamation of strong emotions.

Despite these benefits, Pennebaker asserts that we may not necessarily be better off journaling daily about our traumas. "I'm not even convinced that people should write about a horrible event for more than a couple weeks... But standing back every now and then and evaluating where you are in life is really important."

Of course, people these days need not bring out ye olde quill and parchment like myself to work out their thoughts and emotions. With the expansion of the Internet in the late 1990s came the onslaught of personal blogs (short for "web logs")—everything from the traditional (a la Blogger and WordPress) to the microblog (Twitter) to the highly share-able Tumblr format. It is estimated that there are over 170 million blogs in existence.

The prevalence of digitized thoughts, feelings, emotions, and experiences has given researchers a new tool for tracking changes in society on a massive scale. Most famously, a study published in Science back in September asserted that individuals are happiest in the morning, but the feeling deteriorates as the day progresses—consistent, they say, with the effects of sleep and circadian rhythm. Golder and Macy aggregated data from millions of public Twitter messages, using computer software to detect positive words ("awesome," "agree") and negative words ("hate," "annoy") as well as smiling and frowning faces ("emoticons"). This type of study, as expected, has received much grief for "not actually being scientific."

In a 2004 study published in Psychological SciencePennebaker and colleagues were among the first researchers to explore the power of written expression during psychological distress using a similar mass-blogging data analysis. The researchers downloaded LiveJournal entries of 1,084 public blogs for four months—two months prior to and two months after the September 11 attacks. This method also allowed them to collect age, gender, and location information based on information from their public profiles. Using the text analysis program Linguistic Inquiry and Word Count (LIWC), each word in the 78,000 entries analyzed was checked against a dictionary of 2,300 words and characterized by four basic categories: emotional positivity, cognitive processing, social orientation, and psychological distancing.

Pennebaker found that shortly after the 9/11 attacks (less than two weeks), the blogs expressed significantly more negative emotions and were written with greater psychological distancing. After two weeks, the writers' "moods" returned to baseline (two months before the attacks), but psychological distancing remained elevated over six weeks. Although all effects were stronger for individuals highly preoccupied with 9/11 (i.e. those shown to blatantly write about the events more often), comparable language changes were seen overall.

Although this analysis method is still relatively new and flawed, it shows promise for real-time tracking of response to drastic changes as they naturally unfold, providing a continuous timeline on a massive and diverse scale. This study in particular demonstrates the ability for humans to affiliate more during periods of threat as well as a—perhaps unconscious—concern of individual victims, their community, and/or the entire nation. While zero entries revealed writers' feelings of involvement with a large social group (such as a city or country) before the attacks, 44% of post-9/11 entries did.

Journaling is a powerful tool, whether one does it privately to collect their thoughts, or publicly with the hopes of syndicating to or receiving advice from others. Beyond the therapeutic advantages, I am mostly excited to pass down a physical time capsule of my often-pathetic scrawls and doodlings to my descendants, a sentiment likely derived from my love of the fictional Dear America books. It's also quite fun to look back and see what I was doing on this day a year ago, five years, or ten years ago.

In the meantime, I'll just keeping doing my thing, writing it down, and hope July goes much more smoothly than June!

Cohn MA, Mehl MR, & Pennebaker JW (2004). Linguistic markers of psychological change surrounding September 11, 2001. Psychological science, 15 (10), 687-93 PMID: 15447640

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