Regression is a major topic in autism. Children who lose abilities at a very young age. In Onset patterns in autism: correspondence between home video and parent report, Sally Ozonoff, Ph.D. and a team of researchers at the U.C. Davis MIND Institute looked at the developmental trajectories of children, autistic and non autistic. They reviewed home videos of the children to map those trajectories. They monitored social communication as a function of time.
What they found was even more complex than expected. Instead of finding that some children show low levels of social communication from very early in life. A second group has early high levels of social communication, followed by significant decreases over time (regression). But, there was a third group: a group which was more typical in development followed by not regression, but a plateau in progress in social communication.
The numbers of children in the study are small (53 autistic children), making it unlikely to get a precise idea of what fraction of the children follow each trajectory. According to the IMFAR abstract for this study:
Bayesian Information Criteria were used to select the number of trajectories that best fit the data. There was strong support from coded home video for 3 onset trajectories. The first “early onset” trajectory (n = 20) displayed low rates of social-communication behavior at all ages. The second “regression” trajectory (n = 20) displayed high levels of social-communication behavior early in life and significantly declined over time. The third “plateau” trajectory (n = 12) was similar to the typical children early in life but did not progress as expected. There was no support for a mixed (early signs + regression) trajectory.
Here is the abstract for the published paper:
OBJECTIVE:
The onset of autism is usually conceptualized as occurring in one of two patterns, early onset or regressive. This study examined the number and shape of trajectories of symptom onset evident in coded home movies of children with autism and examined their correspondence with parent report of onset.
METHOD:
Four social-communicative behaviors were coded from the home video of children with autism (n = 52) or typical development (n = 23). All home videos from 6 through 24 months of age were coded (3199 segments). Latent class modeling was used to characterize trajectories and determine the optimal number needed to describe the coded home video. These trajectories were then compared with parent reports of onset patterns, as defined by the Autism Diagnostic Interview-Revised.
RESULTS:
A three-trajectory model best fit the data from the participants with autism. One trajectory displayed low levels of social-communication across time. A second trajectory displayed high levels of social-communication early in life, followed by a significant decrease over time. A third trajectory displayed initial levels of behavior that were similar to the typically developing group but little progress in social-communication with age. There was poor correspondence between home video-based trajectories and parent report of onset.
CONCLUSIONS:
More than two onset categories may be needed to describe the ways in which symptoms emerge in children with autism. There is low agreement between parent report and home video, suggesting that methods for improving parent report of early development must be developed.
The last statement in the results is obviously intriguing. “There was poor correspondence between home video-based trajectories and parent report of onset.”
Here is the segment of the IMFAR abstract:
There was poor correspondence between parent report and home video classifications (kappa = .11, p = .30). Only 9 of 20 participants whose home video displayed clear evidence of a major decline in social-communication behavior were reported to have had a regression by parents. Only 8 of 20 participants with evidence of early delays in social-communication on video were reported to demonstrate an early onset pattern by parents. Of the 10 whose parents described a plateau, only 3 had home video consistent with this pattern.
So, none of the three groups were able to correctly recall the trajectory. Not the parents of kids who regressed. Not the parents of kids who plateaued. Not the parents of kids who had early onset autism.
As parents we’d like to see ourselves as the experts of our children. And, frankly, we are. No one else knows them like we do. But that doesn’t make us infallible.
The study was presented at IMFAR and Shannon Rosa wrote about it for The Thinking Person’s Guide to Autism.
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