News and Knowledge

Whether you are a seasoned researcher or someone new to research entirely, it is easy to be swept up by the extensive amounts of information available on the internet. The area of autism research is no exception. A quick Google search of the word “autism” brings over 167 million results in seconds.

Sorting through all of this information can be a daunting task. Technology has tried to help, and search engines now predict our searches based on previous inquiries. For example, social media sites, like Facebook, for example, filter what we see based on these same searches. Ideally, that filtering provides us with information we want to see. In reality, it doesn’t always work that way. So, if you want autism research that is accurate and evidence-based, how do you find it?

First, the Bad News: Easy Access Isn’t Necessarily the Answer

The easy access to information has its benefits, but it comes with a cost, especially when it relates to personal health and wellbeing. For example, with tracking apps, community networks, and easily accessible research news, people with diabetes have a wealth of information that has led to better treatment outcomes for those engaged in related social media. Conversely, engagement in social media has been known to cause harm in the treatment of people with anorexia, due to misinformation that frequently is conflated with research-based treatment information.

When it comes to the autism community, parents, families, and self-advocates bear the burden of sorting through the plethora of information available via the web. There is a lot of information about autism available; however, there is no central resource for it. Further, research by BuzzFeed noted that more than half (28 out of 50) of the top stories (as evidenced by number of shares) about autism on social media described treatments and causes that were not backed by evidence or had been disproven. Inaccurate information and headlines worthy of tabloids can dilute the wealth of helpful information for the autism community.

Now the Good News: These Steps Can Help You Access Reliable Information

When searching the internet for reliable information, take these steps to better ensure you will find it:

• Be sure that the resources are from reputable sources: Where is the research being published? What is the background or affiliation of the website where the story appears? Reputable published research articles in professional journals typically must go through the scrutiny of peer review, a process in which other researchers comment on the quality of the research based on whether it adheres to the ethical and quality standards of the profession.

• Be wary of headlines: News and other media report research secondhand in ways that the public is more likely to understand. Sometimes, in trying to simplify research, however, they may leave out important details. Ensuring that journalists interpret and report the research accurately is a necessary task if you want to be informed.

• Look for multiple studies that have similar results: Established high-quality studies should be repeatable. Studies that have been repeated by multiple researchers with different participants in varying circumstances and still yielded similar results are likely to be more useful and accurate.

• Understand the study method and its impact: A study may be labeled as having “statistically significant” results, but that phrase can mean different things for different kinds of studies.
  • Pay attention to whether the research is quantitative or qualitative. While qualitative studies have the advantage of developing a deeper understanding of the subjects, they typically can’t be generalized to the population as a whole.
  • Look for the number of people participating in the study. Results from a quantitative study of 1,000 people are often more reliable than a study of 100 people.
  • Consider the variance in study participants. Look to see if the research study participants share other qualities besides autism. For example, if all participants come from a large urban area, the results may not be the same for someone from a rural town.

• Use caution when articles report a “cure” for autism: Many members of the autism community, especially, self-advocates, justifiably take offense to anything that suggests a need for a cure let alone reports that might suggest one. They prefer to focus on initiatives that help society become more accepting of neurological diversity. While there are research-based therapies and interventions that can help people with autism live fuller and less restricted lives, be aware that others are marketed as a “cure,” but are often costly, unproven and even sometimes dangerous. Look for the underlying research.

For more information related to navigating autism research, check out OAR’s A Parent’s Guide to Research.  

Social media companies have made headlines recently for not being good gatekeepers. It’s important to be wary of what you find on social media sites. Taking these steps can help:

• Avoid clickbait: As defined by Facebook, “‘Clickbait’ and spam are posts that are designed to grab your attention and get you to click on links or interact with the post in a specific way. This includes headlines that mislead people or intentionally leave out important details or exaggerate information.” Sometimes, the headline is accurate and the article gives you the desired information. More often, clickbait leads to an article or blog post that doesn’t have much to do with the clickbait headline. Clickbait is readily shared for its sensationalism, as these posts often offer weird facts or new supposed causes or cures for autism.

• Read the original: Does a post sound too good to be true or seem to have some facts slightly skewed? In those cases, check back with the original article referred to in the post or article you read. An advantage of online media is that many articles link to original sources. Take a little time to read the original yourself to be sure you understand the full results.

• Be cautious of posts that friends have liked: Sometimes your friend has not “liked” something at all; instead, their account has been hacked. More often though, posts have simply been “liked” because a friend has read the title, or just a small piece of the article, and finds it interesting. Credibility in this instance is limited.

Contributing Positively to Social Media and Research

With all of the above considerations, it may feel like quite the undertaking to find and utilize creditable research in the digital age.

The amount of information we can acquire in mere minutes from an online search is immeasurably larger than what was available, let alone accessible, prior to online research journals, social media sharing, and online communities. This means that people can find useful information that can affect their lives much faster than ever before. Helpful information is now just a mouse click away. Even better, we can contribute to the information too. There are several ways to promote creditable and useful research through social media.

• Share it: When you find research and have decided it is creditable and useful, share it. The more frequently creditable research is shared, the more people it will benefit.

• Like and follow organizations that post creditable research: Following organizations that consistently post research that they have first vetted both helps spread good research and helps boost the organization’s following.

• Report/flag inaccurate or harmful information: If you see things that are harmful or incorrect on social media, report or flag them. Reporting this type of post helps stop the spread of misinformation and helps strengthen your social media filters, which will help you to see more useful posts in the future.

The internet and social media can be an amazing tool for learning more about autism research. By following these tips and being a conscientious consumer of research, you will be well on your way to reaping the benefits.