The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘epilepsy

Seizing a link between autism and epilepsy

with one comment

A new study published in the May issue of Epilepsia shines more light on the link between autism and epilepsy. The findings were picked up by multiple media outlets, including WebMD and U.S. News and World Report, where health reporter Jenifer Goodwin once again broke down the results. Researchers who looked at records of 127 patients aged 3 to 49 who were autistic and had at least one seizure over a 20-year period at the NYU Comprehensive Epilepsy Center in New York City. They found 34 percent of those patients had treatment-resistant epilepsy, meaning seizures continued despite taking medication. 28 percent were seizure-free after treatment and the remaining 38 percent could not be categorized because there wasn’t enough information to determine if their seizures were treatment-resistant or not. The average age of the first seizure in treatment-resistant epileptics was also significantly younger than those whose seizures were treatable (6 for TRE patients versus 11 for patients without TRE). Autistic TRE patients were also more likely to suffer impairments from autism spectrum disorder, as 54 percent of TRE patients had motor skills delays versus 35 percent for those with treatable epilepsy. Autistics with TRE were also more likely to experience developmental regression, which is sometimes noted among parents or other observers following their autistic children. The study’s author, Dr. Orrin Devinsky of the NYU Langone School of Medicine and director of the NYU Comprehensive Epilepsy Center, suggested autistic children may need screening for epilepsy in order to learn more about the connection between the two conditions.

Goodwin has been busy making sense out of study numbers the last couple days. Unlike her last story about a survey of parents on vaccinations and their trust with different sources, Goodwin uses more figures in the autism/epilepsy study to highlight patterns suggesting epilepsy may be more common and severe when it targets autistic people. For those of you wondering why the study sample is small, recall that autism itself is still statistically rare and some people who may be on the spectrum may not have an official diagnosis. Likewise, the number of epileptics in the world is less than one percent, meaning the statistical odds of encountering an autistic with epilepsy are slim. The results of Devinsky’s study will likely spur more investigations on the link between epilepsy and autism if none weren’t already underway, paving the way for more insights on autism and epilepsy or perhaps presenting other information that may not agree with the study Goodwin reports about.

Remember the inverted pyramid I’ve been talking about for the last few posts? It’s hard to miss in this story, with the first piece of data highlighting the percentage of autistics with TRE, then going into other data relating to autism spectrum disorder, then tying the study with the Journal of Child Neurology publication suggesting epilepsy is more prevalent with autistics than previously thought. She does grab a few quotes from Devinsky, the study’s author, but most of the story spells out the study results. That technique is common with stories on studies as reporters follow their deadlines and, depending on the location or mission plan of the news organization involved, finding the human interest source is hard to find with the low odds of a person diagnosed with both autism and epilepsy.

I’m not an epileptic, but I have read about autistic children and adults suffering from seizures in my observation of autism articles and videos. Neither autism or epilepsy may be curable, and the study only begins to excavate a relatively unexplored area of the autism spectrum. With autistics already facing prospects of sensory overload on a daily basis, making the leap to seizures isn’t a stretch. Seeing more stories linking autism and epilepsy should be expected in future media coverage, but knowing when more reports will file in will be a harder task.

Advertisements

Numbers don’t add up in autism/epilepsy study

with 2 comments

The Journal of Child Neurology published results from research on donated brain tissue from the Autism Speaks Autism Tissue program. The study found that people with both autism and epilepsy had a higher death rate than those with autism alone. 39 percent of donors to the tissue program had epilepsy, higher than the estimated rate of epilepsy in the general autism population. The study authors also examined data from the California State Department of Developmental Services, and found that people with both conditions have an 800 percent higher death rate than those with autism alone. A neurologist and member of the Autism Speaks Scientific Advisory Council suggested that both the autism and epilepsy communities should be motivated by this information to increase understanding of common risk factors and mechanisms of both conditions. The story, while short, has been picked up by multiple news outlets and blogs based on a Google news search I conducted.

The most glaring piece of information that must be examined is the 800 percent gap in the death of rate of autistics and autistics with epilepsy. While that may sound alarming, news outlets and study publishers will often relay statistics in that format as a means of generating attention. That doesn’t mean the information is false, but such margins can still be dramatized (another way news writers will dramatize such a stat is saying “eight times as likely”). When it comes to death rates, the overall percentage can never go beyond 100 for any particular category (and all living organisms eventually die). Unfortunately, not enough constants are given in any news article on this story for me to make a statistic that is less misleading. We don’t know what the death rate means, but based on the data presented by California’s Department of Developmental Services, we can make an educated guess that the death rate in this study refers to a specific point in the lifespan, and that the death rate is relatively low.

In fact, to obtain 100 percent using a multiplier of 800, the death rate of people with autism alone could be no more than .125, an eighth of one percent. It’s safe to say both figures are far lower than that with what I can deduce based on the information presented. In other words, there’s little statistical evidence to be highly alarmed by these findings because news articles did not provide any base percentages to work with. While that would certainly kill a story’s emotional impact, it would also kill any chance the story could be interpreted as a cause for panic. To add mathematical insult to injury, we’re not given the estimate of epilepsy overlapping with autism from the Autism Speaks tissue donation program.

I do not know any autistic people with epilepsy, but a colleague of mine did suffer from an epileptic episode in college. As the two of us live with the experiences of our respective conditions, it can be difficult when stories like this surface and leave out a few minor details that wouldn’t take much time to procure. Either reporters didn’t bother to review the study carefully, or the study itself did not include any base numbers in its findings. While deadlines and space are always the bane of reporters, one task that’s prided on is the ability to provide information so the audience doesn’t have to spend time or resources doing the same.

However, this may also serve a lesson on learning common mathematical functions. Journalists have an old adage about running away from math because that skill isn’t needed for all stories, but crunching numbers is valuable to put stats in perspective, which this story lacks. Calculus isn’t required, but it won’t hurt you to convert numbers into percentages, fractions, averages and so forth.