How do we take the long view on autism?

The precious few long-term studies of autism have produced unique insight into the development and ultimate outcomes of the disorder. How can we encourage more of them?

By Greg Boustead
20 May 2013 | 2 min read
This article is more than five years old.
Neuroscience—and science in general—is constantly evolving, so older articles may contain information or theories that have been reevaluated since their original publication date.

Long-term studies that track people with autism throughout their lives offer promising hints about how the disorder manifests over time. They also affirm a growing concern among autism researchers — that we need more of them.

Read: Long-term studies track how autism changes with age »

Longitudinal studies provide an unparalleled amount of information about the developmental and behavioral trajectories of individuals with autism. Because these studies can reveal how early-life experiences affect outcomes, they may provide a useful window into the ways genes and the environment interact in the disorder.

But these studies are extremely expensive and difficult to execute compared with cross-sectional designs, which examine a group at one specific point in time and make up the overwhelming majority of autism studies. The resources required to track families, make recurring evaluations and collect data over a significant period of time typically render the approach cost-prohibitive.

How can we mitigate some of these issues to make longitudinal studies more viable?                                                             

  • What subgroups or cohorts are best suited for longitudinal study designs? Which factors related to autism need to be studied over time?

  • How might longitudinal studies make use of existing patient registries or be combined with other projects to amplify the payoff?

  • With emerging technological tools, such as online evaluations and rapid screens, how fast and cheap can we collect useful data from large populations over time?

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