Spectrumnews.org: Rethinking regression in autism

The great divide:

To understand this shift from the innate-versus-regressive dichotomy, it helps to understand how that split took hold to begin with. It originated, as journalist Steve Silberman’s bestselling book “NeuroTribes” describes, in Leo Kanner’s seminal 1943 paper describing autism. In that study of 11 children, Kanner claimed to have identified a new developmental syndrome. Although this syndrome, autism, overlapped heavily with a broadly defined developmental condition others were then calling ‘childhood schizophrenia,’ Kanner argued it was unique in that it was present “from the very beginning of life” — even if it only became apparent later. By contrast, childhood schizophrenia, he contended, usually occurred only after “at least two years of essentially average development.”

Kanner’s emphasis on the inborn quality of the 11 children’s traits was crucial to his assertion that he had discovered a new syndrome. As Silberman says, “Kanner needed this dichotomy so he could claim his own turf.”

Kanner’s gambit worked. His paper quickly established autism as a new condition, as well as a new field of study. It also cemented the idea that there are two types of autism, innate and regressive, distinguished by the different onsets and, presumably, different etiologies and developmental pathways. Researchers investigating childhood schizophrenia politely objected, noting that Kanner’s 11 children sounded a lot like children they had studied. Later, during the 1950s, Kanner himself noted that the line between innate and regressive autism was fuzzy. But by then, Silberman notes, Kanner could afford this retreat because his reputation had been secured — and deservedly so.

In the meantime, the dichotomy stuck, and the vast literature that rose around it consistently classified autism as either innate or regressive. Although this sharp divide inspired valuable research, it also caused problems. In Kanner’s day and after, he and other researchers, most notably Bruno Bettelheim, cited regression as evidence that unaffectionate ‘refrigerator’ mothers or working women could somehow warp their children’s development. (Kanner eventually retracted this view.) More recently, anti-vaccine groups have pointed to regression, which frequently occurs at an age when children receive several vaccines, as proof that the shots can cause autism — a spurious argument that has contributed to outbreaks of measles (including a recent outbreak in Minnesota), whooping cough and other serious illnesses.

In fact, after 70 years of autism research, there is still no clear definition of what regression is. Psychologists Brian Barger and Jonathan Campbell have wrestled with this problem energetically over the past few years, combing through more than 100 studies. They have concluded that the literature on regression is “without a central conception” and has “no universally agreed-upon central definition.”

In one meta-analysis of 85 papers, the pair uncovered a hodgepodge of definitions for virtually every type of regression commonly described in autism research — among them, language regression, social regression, motor regression, ‘mixed’ regression, ‘regression, developmental,’ just plain regression and even ‘regression, unspecified.’ In the case of language regression, for instance, they found no agreement on how many words a child must have had and then lost, or how long she needed to have used them, to qualify as having regressed. “You may have one paper saying it’s a single word,” Barger says, whereas another would require 20 words or the use of two- and three-word phrases. One lab might say the child must possess language skills for at least three months before losing them, but another might shorten that window to only a week.

Other definitions were similarly tangled. ‘Social regression’ referred to the loss of a varying subset of skills from a list including, but not limited to, emotional expressiveness, joint attention, eye contact, play skills and the child’s response to her own name. Definitions of ‘language-social regression’ also included different mixes and measures of language and social-skill loss. ‘Mixed regression’ definitions encompassed losses of language, social ability or other skills — sometimes specified (such as motor), sometimes unspecified and sometimes hopelessly broad (such as ‘developmental’). Possibly the most consistent definition, though hardly the most helpful, was for ‘regression, unspecified,’ which, of course, almost always went unspecified.

This definitional disaster, Barger and Campbell wrote in a paper last year, has created a “literature marked by conflicting results.” Barger says it also helps to explain the huge variations seen in estimates of regression’s prevalence. “If you don’t have a clear sense of what you’re looking for, then you can’t clearly prove that what you’re looking for looks the same across independent replications.” The problem, in short, isn’t like comparing apples and oranges; it’s more like comparing apples, oranges, pineapples, spinach and chicken salad. It’s little wonder Barger and Campbell concluded that “the research to date should be considered preliminary.”

They and many others say that these sorts of definitional and measurement problems may mask regression’s true prevalence. Regression may be the norm in children with autism, says Campbell, professor of psychology at the University of Kentucky. “I think you have operational definitional problems. You have measurement problems. And the phenomenon itself is difficult,” he says. “[Regression] might be part of a larger, normal development process. Maybe it’s not specific to autism; maybe there are more kids that go through losses and delays and spurts.”

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