Hyping Autism Research "News" Is a Disservice to People with Autism

Alycia Halladay

Observations

It’s also harmful to serious science

Click-worthy health and science headlines are an essential currency in today’s media world. When they pertain to autism, they might include phrases like “groundbreaking trial,” “offer hope” or “game-changer.” But for people with autism and their families, these headlines and the research news stories they highlight often bring false hope, confusion—or worse.

There is something about autism, a disorder that remains widely misunderstood, that seems to encourage the promulgation of news coverage about potential “breakthroughs” and unorthodox treatment approaches. A nearly constant stream of headlines touts promising new findings that supposedly help explain the origins of autism spectrum disorder (ASD), improve our understanding of its key features or reveal novel ways to treat the symptoms.

This attention is a mixed blessing. It can encourage talented scientists to design research to better understand autism. It also generates support for advocacy efforts and research funding, and I have seen it motivate people to participate in research studies.

However, there is a dark side to this almost insatiable interest in autism science news: it has created an environment that encourages media hype of early, preliminary findings, with headlines that are tantalizing but not always accurate. The hype machine also too often promotes mediocre or even bad science, which ultimately puts people with autism at risk.

In the worst scenarios, families inspired by media coverage may pursue treatments that are both ineffective and unsafe. This has been the case with MDMA, or 3,4-methyldioxymethamphetamine, otherwise known as ecstasy, to treat social anxiety in autistic adults. Much media coverage of this experimental treatment failed to report that the drug is neurotoxic in animal models and humans, and that a “safe” dose has not been established. As a result, the public received complete misinformation via mainstream media outlets. The false hope of MDMA might have led some in the autism community to pursue an illegal—and, more importantly, potentially lethal—intervention.

This wasn’t the first such debacle. In 2013, prominent media outlets reported on an autism treatment that entailed consuming worm eggs, then allowing them to grow in the intestines. This therapeutic approach isn’t as radical as one might think; it is undergoing rigorous experimentation for treatment of Crohn’s disease and colitis. But in reporting positive effects in treating autism, critical details about the study’s significant limitations, including its very small sample size and the fact that it was not peer-reviewed, were buried in the last paragraph of one prominent news report.

The coverage led to conversations on autism chat rooms about how to obtain worm eggs and use them at home. In another case, the headline “Stem Cells Offer Hope for Autism” might have encouraged families to travel to international sites with unregulated medical practices to obtain this therapy, which is still unproven. Conversely, the media is largely missing the mark on the potential of medical marijuana, confusing different cannabinoids and mixing up indications in their headlines. This type of misinformation will only serve to stifle badly needed research into phytocannabinoids in marijuana that do, in fact, show promise for treating epilepsy, which commonly co-occurs in children with autism.

The mainstream news media need to consider a more measured and responsible approach to covering autism research. This should include very careful vetting of which studies are reported. Not all scientific journals are equal in their scientific rigor or review policies, so just because a study is “published” does not mean it necessarily has scientific significance.

In other cases, research becomes newsworthy when it is presented at meetings, or when preliminary data are announced in a press release without any review whatever. To get a better handle on what information is legitimate and significant, media outlets should partner with autism experts to help decipher what is, in fact, news. This may mean taking a more measured approach to headlines, relying on additional outside sources to provide necessary perspective, and being more explicit with qualifiers about the limitations of the findings being reported. It may also mean scuttling stories based on the cautionary insights of those third-party experts.

Finally, media stories should be updated when later findings either prove or disprove early, headline-making scientific theories—and the updates should be promoted as aggressively as the original stories were. We all deserve to know when these news-making studies fail, have unintended negative consequences or ultimately don’t produce the anticipated results. 

News coverage of autism science is important for a community constantly searching for answers. Journalists have an obligation to do a better job of making sure those answers are real.

from https://blogs.scientificamerican.com/obs...