The Normalization Agenda, Part One

Today I want to talk about one of the issues that almost immediately came to the fore as autistics began to talk to one another online in the 1990s.  It remains a major topic of interest within the autism community today.  This is what has often been labelled the “normalization agenda”—the effort to teach autistic people how to become (or more specifically—and the distinction really matters here–how to act) “normal.”

 

First:  a bit of history.   In the 19th and early 20th C., non-verbal people with autism were generally labelled “feeble-minded” and sent to institutions (or sometimes discreetly allowed to die at home).  Verbal autistics might remain in the care of their families; if they had fairly strong social skills they might even be accepted as somewhat “eccentric” members of the broader society.  They were never given the label “autistic,” however.  Only in the early 1940s, was “infantile autism” recognized as a distinct condition, by Leo Kanner at Johns Hopkins (although it now looks as though Kanner “lifted” some of his data and ideas from the Austrian psychiatrist Hans Asperger).  Kanner, who examined only a few children from relatively well-to-do families, believed that autism was a rare form of mental illness.  From the time he first wrote about it in 1943 through the 1960s, American psychologists followed his lead, trying to address the problems their autistic clients presented through psychotherapy of one kind or another.  Over the course of the 1960s, however, autism (still considered a very rare condition, because the vast majority of people with autism remained in institutions and therefore escaped the attention of psychologists) came to be seen as a developmental disorder, the expression of unusual wiring in the brain.  That view has been confirmed over recent decades, as CAT Scans and MRIs have revealed differences in structure, connectivity, and levels of neurotransmitters in the brains of autistic people.  (Although there is certainly no clear-cut line separating autistic from “normal” brains.)

 

But back to the 1960s.  The shift to from a psychogenic to a biogenic explanation for autism had several interesting corollaries.  First, there was a startlingly quick change in estimates of autistic intellectual capabilities.  The received wisdom before  the late 1960s was that people with autism had normal, or perhaps even superior intelligence.  By around 1970, however, the scientists who now understood autism as a developmental disorder also assumed that that disorder necessarily entailed what they called “mental retardation,” and indeed usually quite profound mental retardation.  It turns out that they were wrong about this, but their assumptions about mental incapacity contributed to a new understanding of autistic people as not just sick, but inherently defective.  Their mental wiring was not just different, but profoundly dysfunctional, and there was little that could be done about it.  From the late 1960s through the 1980s, most doctors counselled parents of children diagnosed with autism to send them into institutions and then try to forget about them.

 

An exception to this rule was Ivar Lovaas of UCLA, who thought that he could use Skinnerian principles to improve the behavior of autistic children.  When Lovaas died in 2010, he was lauded by other psychologists as the compassionate champion of these suffering children.  I have to say that I, as well as many autistic people, have severe doubts about this appraisal.  Even leaving aside his methods, which involved the use of extreme aversives (slapping, electric shocks, food deprivation, isolation, etc.) to extinguish what he considered problematic behaviors, his expressed attitude towards the subjects of his experiments was perfectly appalling.  This is what he said in a 1974 interview with Psychology Today:  “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but l you have to build the person.”[1]  To note this horrible attitude is not to undermine his scientific achievements—it is merely to observe that Lovaas was not really a very nice person.

 

ABA (Applied Behavior Analysis), which is rooted in Lovaas’s methods, remains the dominant and most frequently recommended intervention for autistic children to this day.  It is one of the few interventions that health insurance will (sometimes, in some states) cover.  I’m not going to address the vexed question of how well Lovaas’s method, and the treatments that developed out of his method, actually work—that’s a complicated subject, still hotly debated, and it would take too long to cover here.  What I would like to focus on is the stated GOAL of ABA, which was in Lovaas’ time, and remains today, to take an autistic individual and “build a person,” and more specifically, to “build a normal” person.

 

In a still frequently cited 1987 article, Lovaas claimed that out of a group of autistic children who had been subjected to 40 hours/week of intensive behavioral interventions beginning at age 3, 47% had become, by the end of first grade, “indistinguishable from their normal friends.”[2] That was Lovaas’s phrase: “indistinguishable from their normal friends.” Today the more common formulation is “indistinguishable from their peers.”  But from the 1980s through 2016, the key word has remained “indistinguishable.”  It still appears over and over again today, both in research reports and in advertising for companies that offer ABA treatment.  The ultimate goal of treatment in 2016, as in Lovaas’s time, is to change behavior, to make autistic people look and act like everyone else.  This is what the practicioners of ABA call the “optimal outcome”—the normalization of autistic people.

 

In fact, relatively few children ever reach this goal—Lovaa’s claim of a 47% success rate in 1987 has never been equalled since.  More commonly, it is said that about one fifth to one quarter of those who go through ABA achieve the optimal outcome.  The majority of autistic children, those who do not become “indistinguishable,” have not reached the optimal outcome.  In a sense, they have “failed” (a point to which I will return later on).

 

Sometimes complete normalization of behavior is equated with “recovery” from autism.  “Recovery” language is found in many popular books and websites, some of which offer extremely dubious methods for “healing” people with autism.  However, it also can be found in scientific papers, especially—but by no means uniquely—in papers produced by a research group at the University of Connecticut, which has focused on studying the characteristics of a small number of “recovered” autistic children, children who appear to have achieved the “optimal outcome,” to have become “indistinguishable from their peers.”  These individuals can speak more or less as other people do, and can engage in ordinary conversations.  They can be successful in mainstream classrooms.  They have “normal” or “typically developing” friends.  But have they really “recovered” from autism?  Has ABA therapy, or any other form of intervention, actually affected the underlying neurology behind the observable symptoms of autism?

 

The answer is that no one knows and surprisingly few people have even tried to find out. [3]  In fact, I have been able to locate only a single study that even attempts to trace changes in brain structure or function as a result of an early intervention (not ABA in this case, but the Early Start Denver model).  The researchers wanted to see whether autistic kids could learn to take a “normal” interest in human faces.  This study compared EEG readings of typically developing children and autistic children who had gone through the ESDM, while the kids were looking at pictures of faces and other objects.  The researchers found that when the children were looking at faces, the EEGs of both groups were very similar, although not quite identical;  the researchers used that finding to claim that “early behavioral intervention is associated with normalized patterns of brain activity.” [4]

 

Now, there are a number of methodological issues with this study.  In the first place, about half of the kids in the autistic group simply refused to cooperate with the EEG protocol, so there was no data for them at all.  Secondly, there were no baseline readings for the period before intervention—the children’s EEGs were only examined after, not before, treatment–so even in the case of those who cooperated, it is not really clear what, if any, neurological effects the intervention actually had.   Most importantly, the EEG scans only measured whether children who had been trained to look at faces showed activation in certain areas of the brain when they looked at faces.  This shows that autistic kids can be trained to notice faces, but it is pretty far from “normalized brain activity.”

 

Given the plasticity of the human brain, especially early in life, it is quite possible that interventions could change autistic neurology, moving the young autistic brain towards a more typical structure and function.  However, we simply don’t know whether the interventions currently being used have that effect.  We don’t yet have reliable studies based on brain scans.  Neither are parents and therapists in a position to give reliable data on this, because, while they can observe normalized behaviors, they don’t know what’s going on in the heads of the people whose behavior has been normalized.  They don’t know what the experience of acting “normally” feels like for those whose behavior was not originally normal.  So, I have looked on the web for information what people who were diagnosed with autism as children, but who have nevertheless learned to act “normally,” have to say about their own experiences.

 

Do any of them say they have actually “recovered” from autism?   In fact, very few do.  I have been able to find only a tiny number of first-hand accounts of “recovery” on the web.  In one video, a young man who quite recently went through the Lovaas program as still practiced at UCLA, proudly declares that he has recovered from autism.[5]  There is another video available online in which a young woman claims to have recovered from autism not because of the ABA treatment she went through at an early age, but because of the gluten- and dairy-free diet she adopted during adolescence.[6]  A third account makes no mention of therapy at all, but attributes recovery to intensive prayer.[7]  Now it may very well be that the majority of those who achieve optimal outcome are more interested in getting on with their lives than in recording their transformation.  But it is also true that what looks like “recovery” to parents, therapists, and scientists may involve no significant change in neurology at all.

 

While it is difficult to find first-hand reports written by adults who say they once were, but no longer are autistic, it is EXTREMELY easy to find first-hand accounts written by adults who say they have learned to act normally or “neurotypically,” even though their neurology has remained autistic.  These are people who identify themselves as autistic and who engage eagerly with the online autism community.  However, they report that they have learned to stop doing what comes naturally to them, and to engage instead in behaviors they find unnatural or even unpleasant.  They have learned to suppress their stereotypic or self-stimulatory behaviors (what the autistic community calls “stims”), even though they still want and need to use them.  (Usually these people “stim” in private, when no one is watching.) They have learned to look people in the eye, even though doing is painful.  They know how to “use their words,” even though words may not express what their visual imaginations want to say to the world.  They have memorized a large number of scripts that they are able to use in casual conversation.  In other words, even though they remain autistic, they have learned to “pass” as normal.

 

 

 

[1] Paul Chance interview with Lovaas:

http://neurodiversity.com/library_chance_1974.html.

[2] O.I. Lovaas, “Behavioral treatment and normal educational and intellectual functioning in young autistic children,”Journal of Consulting and Clinical Psychology, 55 (1987), 3-9.

[3] A call for more studies that look at neurological outcomes:  Poustka, L.,  Brandeis, D., Hohmann, S., et al., “Neurobiologically based interventions for Autism Spectrum Disorders:  Rationale and New Directions,” Restorative Neurology and Neuroscience 32 (2014), 197-212.

[4] Geraldine Dawson, Emily Jones, et al., “Early Behavioral Intervention Is Associated With Normalized Brain Activity in Young Children With Autism,” Journal  of the American Academy of Child and Adolescent Psychiatry 51: 11 (2012), 1150-59.

[5] “Recovery from Autism: The Joe Mohs Story,” on Youtube:

https://www.youtube.com/watch?v=sIlny3iUt8A.

[6] http://vickeg0117.blogspot.com/2016/06/how-i-recovered-from-autism.html.

[7] http://www.wittyprofiles.com/q/4696258.

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