Regression in autism spectrum disorder: Reconciling findings from retrospective and prospective research.
Parent stories of sudden skill loss in autism are usually milder and slower than they sound, so assess and treat the child you see today.
01Research in Context
What this study did
Pearson et al. (2018) looked at every paper that compared two ways of spotting skill loss in autism. One way asks parents to remember what their child lost. The other way watches babies every month from birth. The team read all the studies and lined up the stories side-by-side.
What they found
Parents often recall a sudden, big loss of words or play skills. Videos and monthly check-ups show the same kids actually slide back slowly or simply stop gaining new skills. The gentle fade is easy to miss until you measure it with charts and timers.
How this fits with other research
Siperstein et al. (2004) saw the same thing earlier: most parent stories of regression could not be proven when doctors checked old home movies. Mount et al. (2011) counted real cases and found only about one in four children with autism show clear loss, far fewer than parent surveys suggest. Warnes et al. (2005) add that whether a parent says the child regressed or not, the child’s IQ and autism severity at age four look the same. Together these papers do not fight each other; they simply show that memory paints a sharper drop than science can measure.
Why it matters
When you interview a family, treat regression reports as helpful clues, not hard facts. Probe for video, baby books, or therapy notes. Track the child’s current skills and plan teaching from there. Do not assume a child who “lost language” needs different intervention than a child who never had it. Base goals on today’s data, not yesterday’s story.
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02At a glance
03Original abstract
The way in which the behavioral manifestations of autism spectrum disorder (ASD) emerge in infancy is variable. Regression-loss of previously acquired skills-occurs in a subset of children. However, the etiology and significance of regression remains unclear. Until recently, investigation of regression relied on retrospective report by parents or examination of home videos from early in life. However, home videos and retrospective report of the nature and timing of regression, and association with factors such as illness or immunization, is potentially subject to bias. The advent of prospective studies of infant siblings at familial high-risk of ASD has the potential to document regression as it occurs. Recent research has suggested that subtle loss of skills occurs in a larger proportion of children with ASD than previously assumed; however, there are few reports of clear-cut regressions, such as that involving dramatic loss of language and other established skills, in the prospective literature. This could be because of the following: clear-cut regression occurs less commonly than parent report suggests, study design limits the potential to detect regression, or there are differences between multiplex and simplex families in the rate of de novo genetic mutations and therefore regression risk. This review will bring together literature from retrospective and prospective research and attempt to reconcile diverging findings, with a specific focus on methodological issues. Changing conceptualizations of regression will be discussed, as well as etiological factors that may be associated with regression. The main challenges that need to be addressed to measure regression in prospective studies will be set out. Autism Research 2018, 11: 1602-1620. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Regression-a loss of previously established skills-occurs in a subset of children with ASD. Parental recall is not always accurate but studying younger siblings of children with ASD, 10-20% of whom will develop ASD, should make it possible to measure regression as it occurs. Clear-cut regression, like loss of language, has not often been reported in infant sibling studies, but recent research suggests that gradual loss of social engagement might be more common. This review looks at the evidence for regression from infant sibling studies and asks how study design affects the likelihood of capturing regression.
Autism research : official journal of the International Society for Autism Research, 2018 · doi:10.1002/aur.2035