Category Archives: ABA

Henny Kupferstein’s Research Study

Henny K. is a doctoral student working on sensory integration.  She also offers piano lessons via Skype to students on the spectrum (both speaking and non-speaking, including those with dyspraxia).  Henny  is currently conducting a research study on childhood behavioral interventions, from the point of view of both autistic adults and caregivers.  To participate, go to this site:

https://hennyk.com/2016/07/16/research-study-on-autism-childhood-interventions-online-survey/

I think the results should be extremely interesting.

 

 

Recent ABA Experience?

So my talk last week to the clinical psychology program went well–but I infuriated two people who used to be ABA therapists.  They insisted that ABA was the most useful intervention for kids with autism, and that none of the bad stuff I was describing happened any more (they insisted that nobody nowadays attempts to “normalize” autistics, suppress stims, or use aversives–except for the Judge Rottenberg Center, which they agreed was a disgrace).

So here’s my question:  does anyone out there have RECENT (last ten years) experience with ABA, either good or bad?  Are you a teen or young adult who has had ABA therapy within the last ten years?  Are you a parent, whose child has had ABA therapy recently?  What were those experiences like?  I would really appreciate anything you can tell me.

The Normalization Agenda, Part 2

Please note:  this is the second part of a talk I will be giving this Friday to a clinical psychology program.  I would be very grateful for comments, corrections, etc.

(Continuing from Part 1)

From here on, there will be a lot of quotations from the writings of these autistic adults, because I want them to be able to speak for themselves about their situation.  Perhaps I should mention that their language often draws on several pre-existing discourses, including those of the civil rights, LGBT rights and broader disability rights movements.  As Cynthia Kim, author of a well-known blog called Musings of an Aspie, notes:

“The concept of passing originates in racial identity. In societies where being classified as a certain racial group leads to discrimination (or worse), some members of that group may present as members of a different racial group. For example, some people with African ancestry passed as Arab or Native American to avoid segregation in the US. Some people of Jewish ancestry passed as Aryan in Nazi Germany to save their lives.  Today, people with hidden disabilities are said to pass when they present in a way that conceals visible signs of their disability. Many autistic people make a conscious effort to pass. Not stimming visibly is a way of passing. Giving the “right” answers to the social communication questions on a job screening test is a way of passing. Going out for a beer with workmates when you’d rather go home and curl up in front of the TV is a way of passing.”

In the writings of autistic adults, both activists and non-activists, “passing” is shorthand for “still autistic, but able to appear “indistinguishable” from neurotypical.  Autistics also often describe “being in the closet,” and sometimes “coming out” to a few close friends (or more rarely, to an employer).[1]  In other words, they use the language of other groups who have historically suffered from discrimination, to distinguish what they see as their “real” identity from the learned identity they must assume in order to survive in the world.

These adults clearly recognize how essential the skill of “passing” is to success in life.  Passing opens the doors to education, employment, housing, independence.  Judy Endow, an educational consultant and well-known speaker on autism, writes a blog called Aspects of Autism Translated.  She is an older woman, who did not have early intervention available to her when she was young—instead her family committed her to a psychiatric institution.  Judy—who is very, very bright—taught herself social skills to escape institutionalization, to escape from poverty and homelessness in her early adulthood, to learn to raise her own autistic kids, to obtain college and graduate degrees, and finally to establish a satisfying career.  She learned to “pass” as normal because she had to, and she points out in her blog the many ways in which passing has been useful to her and to other autistics.  But like most other autistic writers—and unlike most scientists and professionals–she also recognizes that passing has a high cost for those whose neurology remains autistic:  “I know in the field of autism we have made it our goal to get autistics to look neurotypical . . . Many people congratulate themselves when it happens. I am here to tell you . . .  that this may NOT wind up to be a good thing for autistic people.”[2]

But why not?  What’s wrong with learning to act “normal”?   Well, to begin with, when very young children (pre-schoolers, children as young as 2 or 3) are taught–through 40 hours a week of intervention, in the case of classical ABA, or perhaps 20 hours a week in many contemporary interventions—to repress their instincts and act in socially acceptable ways, they simultaneously learn that their natural instincts and behaviors are wrong.  Why else would adults spend so much time extinguishing those behaviors?   “. . . intensive ABA therapy, “writes Sparrow Rose Jones, “will . . . teach a child that there is something fundamentally wrong and unacceptable about who they are. Not only is that child trained to look normal, they are trained to hate who they are inside. They are trained to hate who they are and hide who they are. . . .  All those years of ABA therapy will have taught them that they are fundamentally wrong and broken.”[3]

This is the unspoken message of the intervention itself, which the autistic child will learn alongside facial recognition and social skills, unless the therapist and the parents involved take great care to counteract it.  Sadly, however, far too many parents, desperate for their child to become “normal,” actually reinforce it.  Here is Larkin Taylor-Parker, now a young adult, describing  her fairly recent experiences:  “Learning to pass took me years of practice with a special method: every time my family went out in public when I was a child, the ride home was a lecture on my failings. I was upbraided for gait, demeanor, eye contact, manner and content of speech. The reward for perfect success was a moment of rare parental affection.”[4]  Similarly, Amethyst Schaber, who produces the fantastic Ask an Autistic videos on Youtube, writes:  “Imagine being told every day of your life that who you are is bad, shameful, and broken. Imagine that the people who love you the most and who are supposed to support you, your family, insist that you have to pretend to be someone else every day for the rest of your life.”[5]

Even after early intervention comes to an end, the view that autism is a shameful defect is constantly reinforced by public messages.  The infamous Autism Speaks campaign from 2009, called “I am Autism,” reminded older autistics that they were to blame for publicly humiliating their relatives, and bankrupting their families—not to mention breaking up their parents’ marriages.  The video is no longer on Autism Speaks’ website, but the messages that well-known organization, let alone some of the other, even crazier organzations, purvey have not improved.  Their publicity campaigns and public events all focus on “preventing” and “curing” autism—that is, at making autistic people disappear from our society—rather than on helping people with autism live successful and happy lives. As Jocelyn Eastman, who writes the Art of Autism blog, puts it:  “We are portrayed as broken and as needing to be cured. We have had people tell us to our faces that they would rather have a child die of a preventable disease than to have their child become autistic. We have had people tell us that they can’t wait for prenatal testing so that people like us can be aborted, and that we won’t have to be burdens anymore. All the while, we are expected to accept that others feelings about autistic people are acceptable and understandable. . .”[6]  As a result, even adults who have learned to behave normally often suffer from internalized shame, simply for being autistic.

That shame is accompanied by constant anxiety about being exposed as autistic.  And such anxiety sets in at a very early age:  “Being aware of the dissimilarities between me and my peers didn’t make things any easier,” writes Nicole Wildhood, in an article written for The Atlantic magazine.  “ . . .  the awareness made me hyper-vigilant about appearing ‘normal,’ and so all the more anxious. By age 5, I had begun a high-level construction project, creating a new outward-facing version of myself to fit with the social norms I perceived. . . .”[7]   Anxiety is a very significant problem for people with autism, for a variety of reasons.  But social anxiety, resulting from pressure to “maintain the act,” is a major stressor for adults.  This is what Joseph Galbraith has to say about this anxiety:  “For the majority of my life, I was so concerned with, and so preoccupied with passing, so terrified of saying or doing the ‘wrong thing’ and being ‘discovered’ as neuro-divergent that this neuroses took up almost all of my mental energy.  The majority of the time was spent second guessing everything I said, and everything that I did.  My entire mental energy was consumed with ‘putting up a false image’ one that would be accepted by those around me.”[8]

And this brings me to the most important “cost” autistic people pay for passing as “normal”:  simple exhaustion—exhaustion to the point of incapacity, of complete burnout.  In the absence of a “normal” neurology, it actually takes a tremendous amount of mental and physical energy to maintain the façade of normalcy. And the energy taken up by that process is not available for work, for play, even for self-care.  Here is a particularly rich discussion of this issue, written by Kassiane Sibley, in a piece that has often been cross-posted and referenced by members of the autism community, called “The Tyranny of Indistinguishability.”  It’s a long quote, but I want to read the whole thing because the language is so evocative.  I should explain that it begins with a word often used by the online autistic community:  “allistic”—meaning someone who is not “autistic.  So here is what Kassiane has to say:

“The Allistic Emulator software we run on our Autistic operating system needs constant attention. Have you ever run an emulator program? Like all of them, mine is slow, it is buggy, and it takes up processor power that’d be better off being devoted to another task. And it constantly needs upgrading to perform anywhere close to spec. . . .  When I gave a shit about my safety & about the people who taught me this–which was everyone in my life in my youth, as that’s how these things tend to work–I was constantly upgrading my emulator. Constantly relearned more in depth performances. It made me tired, anxious, cranky, and it failed frequently. The failures were distinguishable in the worst kind of way.  Failures were marked in tears. In full on meltdowns. In self loathing and self injury. Inability to do anything–eat, sleep, move–because of exhaustion and inertia. Did I mention self loathing? Severe anxiety. Self isolation (if I do it first they can’t!). Intimately detailed, ritualized recitations of all the ways I failed at being a human being. Because keeping up the act of humanity is what is required to be thought of as human. How very Lovaas.  So much energy was put into being a real person that I didn’t have the cognitive capacity to do as well as I could at any of a number of things. Between the day to day facade and flat denial of my visual support needs, all my learning bandwidth was diverted into running my shitty, self defeating emulator”.[9]

In childhood, all of Kassiane’s “learning bandwidth” was taken up by the effort to act “normal,” so she didn’t have the cognitive capacity to engage as well as she could in other activities.  But this effort does not, cannot stop with childhood.  The “emulator software” requires constant maintenance and upgrading throughout adult life, sucking away energy that might be devoted to other, more productive activities.

Adult autistics trying to pass have to focus intensely on all kinds of things most of us never even consider.[10]  If they are lucky enough to have a paying job, for example, they need to get their work done, while also keeping the “allistic emulator” going without respite.  They have to work while dealing with the demands of their autistic neurology, without ever revealing that they are autistic—because “coming out” as autistic is likely to cost them their job.  Simply getting to work can be overwhelming:  riding a bus, for example, requires not only dealing with unpleasant sounds and smells, but also keeping track of somewhat unpredictable multi-step procedures—a struggle for people with executive functioning issues.  You have to find the right bus stop, get on the right bus, pay the fare, move through the crowd on the bus to look for an available seat, watch for the right stop, move through the crowd again to get off, get from the bus stop to the work site, etc.  Once you get there, there will be multiple sensory challenges.  Flashing lights on computer screens and overly-bright fluorescent lights (which also, by the way, make a low level buzzing noise many autistics find intolerable) create headaches and dizziness.  The constant “background” noise as people in the room talk on the telephone or to each other, is never actually in the background for an autistic person, and it makes it difficult to distinguish what your boss is trying to say to you.  Intense smells in the bathroom and lunch room make you feel sick to your stomach.  You can never ignore the uncomfortable tightness or scratchiness of work clothes.  Just maintaining the correct physical appearance can be a significant problem.  Scott Monje, who writes the Shaping Clay blog, talks about how he has to “artificially hold” his face, for hours, to hide the fact that his eyes are not symmetrical and that his mouth naturally twists so that one side is open.[11]

Employment also involves a multitude of supposedly simple social interactions–involving eye contact, small talk, and constant snap judgments about appropriate responses, all of which can provoke intense anxiety.  “I am exhausted at the end of a work day,” writes Judy Endow, “because it takes a great deal of effort for me to continually stifle my reactions to sounds, sights, smells and movements that others do not typically notice. I have to particularly pay attention to conventional social mannerisms such as remembering to look at people during conversation, track which words are “work words” and which words are “social fluff words” and respond accordingly. I work at this because I like to be able to fit in and in many respects my continued employment depends on it.”[12]

Autistics trying to “pass” as neurotypical  at work cannot use their best coping mechanisms—they can’t use stimming to release tension, or have a complete meltdown on the bus–because this will break through the neurotypical disguise and reveal the autistic beneath.  (The meltdown on the bus may also lead to a police call and involuntary hospitalization.)  So these adults suck it up and keep trying to pass.  But, as one autistic blogger puts it:  “What [the people around me] don’t see is my suffering. They don’t know that sometimes I am panicking on the inside or going through sensory overload right in front of them. How could they? . . .  I learned to hide these things years ago. Nobody sees me freaking out, knows when I am having stomach issues, or my head is pounding from the florescent lighting of the office I work in two to three days a week.  I don’t complain. I smile, push forward, pull up my big girl panties and do what I have to do to make sure that I am able to provide the best possible life for myself.”[13]  The coping comes at home, like this:  “For every hour that we manage to pass, we spend two or three or five recovering. We pull off a great passing act at work and pay for it by needing the whole weekend to recharge. We juggle a full class load like our typical peers and end up overwhelmed to the point of illness by midterms.”[14]  Or like this “Every day when I came home, I would just fall asleep on the couch or on the floor. I didn’t write. I didn’t play video games, even. I just came home and… stopped…”[15]

The harder these autistic adults work at passing, the more exhausted they get; and the more exhausted they get, the weaker their ability to keep up the act.  Scott Monje, whom I mentioned before, is a successful writer and a university lecturer.  But he has trouble keeping his face looking “normal,” and he also has trouble continuing to speak “normally,” as fatigue sets in:

“I can talk for extended periods, but the more tired I get, the more my speech impediment slips out. It starts as a stutter, then I go tonally flat, and eventually I lose control over my enunciation and start to sound like the stereotypical autistic. Usually I also get frustrated and have a hard time keeping myself from shouting when this happens, because I stop being able to say the words I intend to say, and instead I insert similar-sounding but incorrect words, like saying “speak” when I mean “steep”. When it gets really bad, I will be able to see the word in my mind’s eye, as if I was silently reading, but I will not know how to say it out loud.” [16]

In other words, this intelligent, accomplished man who is sometimes able to be “indistinguishable from his peers,” will revert to his natural, non-verbal autistic state when he becomes too tired to keep up the act any more.

Which brings me to the final cost of “passing”: “autistic burnout.”  If you search the PsychInfo database for “autistic burnout,” you will find quite a number of articles concerning burnout as a problem for parents of autistic kids, for special education teachers, even for ABA therapists.  Nothing at all about burnout among autistic adults—except for a single short piece, by an engineer, discussing ways to make the engineering workplace, specifically, more accommodating for autistic engineers.  Psychologists have apparently not considered the possibility that autistic adults might burn out, but it is a very real phenomenon, with serious consequences.  Within the autistic community, “burnout” refers to what happens when maintaining the act of being “normal” simply becomes too exhausting, and someone is therefore forced to abandon work or school or whatever else they were engaged in—sometimes for a few weeks or months, sometimes forever.

Some people refer to burnout as “autistic regression”—because when an autistic person burns out, he or she generally loses the skills learned in those early childhood interventions—the ability to act “indistinguishable” from peers–and reverts to his or her original autistic self.  One person describes what happened when her life became too stressful this way:  “There goes my job and my relationship. I had to move back in with a friend. Now, a year and a half later, I have no other friends aside from the two I’ve limited to online-only contact, barely speak to my family, and panic at the thought of leaving my house. I stim openly in public, wear headphones wherever I go, don’t force myself to do anything that is too overwhelmingly stressful, and… overall just feel ‘more autistic’ than ever.”[17]

Amethyst Schaber, who has experienced burnout and recovery herself, defines autistic burnout as “something that happens to autistic people who have been in a sustained state of anxiety or exhaustion, or to autistic people who have been passing as non-autistic without enough time to be themselves and recover. It is awful. It’s like a mental breakdown, with skill loss and what professionals call ‘regression’ thrown in there too. Many autistics in burnout are depressed and many experience suicidal ideation.”[18]  Or, to put it another way: when autistics “finally crumble from years of hiding their sensory pain and years of performing their social scripts and blaming themselves every time a script doesn’t carry them successfully through a social situation, they will be angry at themselves and blame themselves for their nervous breakdown and autistic burn-out.”[19]  I want you to notice the references here to “anger” directed inward, to depression and suicidal ideation—because these are the most dangerous of burnout’s consequences.

Earlier this year the British Journal of Psychiatry published a Swedish study that looked at the life expectancy of more than 27,000 people with autism.  It contains a lot of troubling food for thought.  The overall finding was that autistic life expectancy is, on average, 16 years less than that of the general population.  The majority of autistics I mentioned earlier—the majority who CANNOT learn to be “indistinguishable” from their peers—account for most of this difference.  The people in this group tend to have co-morbid physical conditions–respiratory problems, heart disease, diabetes, and especially epilepsy—that kill them at an early age.  This group is also more prone to fatal accidents than the people we have been looking at, the ones who have the capacity to act “normally.”  One finding, however, was particularly disturbing.  It is already well known that somewhere between 30 and 66% of all those on the autism spectrum have considered suicide.  What the Swedish study showed is that among those with “milder” forms of autism—that is, among the kind of people I have been talking about today, the ones who can sometimes “pass” as neurotypical—the rate of completed suicide is NINE times higher than it is in the general population.[20]

These folks are killing themselves at appalling rates—and there are things we could be doing about that.  Better diagnosis (especially for girls and women, whose autism is underdiagnosed), better treatments (anti-depressants often have peculiar effects on those with unusual neurologies), better access to health services, in settings that don’t create sensory or social stress.  Greater efforts to curb bullying of autistic children in schools would help, as would greater efforts to get employers to hire, accommodate and promote autistic adults.  Most importantly, however, it is time we as a society stopped telling autistic people, young and old, that they are only worthwhile as long as they can appear normal.  Because as long as their neurology remains autistic, this is simply setting them up for exhaustion, failure, and possible suicide.

Dani Alexis, the brilliant young woman who writes the Autistic Academic blog, was punished as a child for any behavior that varied from the norm.  She quickly absorbed the fact that her needs were not important to the adults around her, and was, as a result, suicidal for a very long time.  I think I will let her have the last word on what I’ve been calling the “normalization agenda.”  This is what she says:

“I’m one of the handful of autistic people who, for a few brief moments, achieved indistinguishability from peers.  What you are seeing now is the result of thirty years of constant work toward that goal.

It was not worth it.”[21]

 

 

 

 

[1] See Lydia Brown, “The Politics of Coming Out,” on the Autistic Hoya blog:

http://www.autistichoya.com/2012/10/the-politics-of-coming-out.html.

[2] Judy Endow, “Autistic Burnout,” on the Aspects of Autism Translated blog:

http://www.judyendow.com/advocacy/autistic-burnout/.

[3]  Sparrow Rose Jones, “ABA,” from the Unstrange Mind blog:

https://unstrangemind.wordpress.com/2014/10/07/aba/.

[4] Larkin Taylor-Parker, “Passing:  How to Play Normal,” from the Think Inclusive blog:

http://www.thinkinclusive.us/passing-how-to-play-normal/.

[5] Amethyst Schaber, Response to a question form lesmis5, on the Neurowonderful blog:

http://neurowonderful.tumblr.com/post/104511295106/lesmis5-so-my-sister-just-threw-the-biggest.

[6] Jocelyn Eastman, “Looking Autistic:  The Positives and Pitfalls of Passing,” from the Art of Autism blog:

http://the-art-of-autism.com/looking-autistic-the-positives-and-pitfalls-of-passing/.

[7] Nicole Wildhood, “What Does It Mean to ‘Look Autistic’?” The Atlantic March 24, 2016:

http://www.theatlantic.com/health/archive/2016/03/what-does-it-mean-to-look-autistic/475287/.

[8] Joseph Galbraith, “Passing in the Neurotypical World,” from the A Boy with a Whole in His Head blog:

http://www.aboywithawholeinhishead.info/2016/03/passing-in-neurotypical-world.html.

[9] “The Tyranny of Indistinguishability:  Performance,” on the Radical Neurodivergence Speaking blog:

http://timetolisten.blogspot.com/2013/11/the-tyranny-of-indistinguishability.html.

[10] FIX REF  Kate, “Passing,” on The Thinking Person’s Guide to Autism blog.

[11] Michael Scott Monje, “Not That Autistic,” originally published on his blog, Shaping Clay (http://www.mmonjejr.com/2013/01/not-that-autistic.html), but updated (among other things, to add the information about his facial muscles) for publication in The Real Experts:  Readings for Parents of Autistic Children, ed. Michelle Sutton (Autonomous Press, 2015).

[12] Judy Endow, “Losing an Autism Diagnosis,” on the Aspects of Autism Translated blog:

http://www.judyendow.com/autistic-behavior/losing-an-autism-diagnosis/.

[13] “Anna,” “Off the Spectrum:  How Autistic Are You?” from the Anonymously Autistic blog:

https://anonymouslyautistic.net/2016/08/09/off-the-spectrum-how-autistic-are-you/.

[14] Kassiane Sibley, “The Tyranny of Indistinguishability:  Performance,” on the Radical Neurodivergence Speaking blog:

http://timetolisten.blogspot.com/2013/11/the-tyranny-of-indistinguishability.html.

[15] Michael Scott Monje. “In Passing:  On Not Passing, Failing to Pass, and Social Skills,” on the Shaping Clay blog:

http://www.mmonjejr.com/2012/07/in-passing-on-not-passing-failing-to.html.

[16] Michael Scott Monje, “Not That Autistic,” originally published on his blog, Shaping Clay (http://www.mmonjejr.com/2013/01/not-that-autistic.html), but updated (among other things, to add the information about his facial muscles) for publication in The Real Experts:  Readings for Parents of Autistic Children, ed. Michelle Sutton (Autonomous Press, 2015).

[17] “AinsleyHarte”  http://wrongplanet.net/forums/viewtopic.php?f=3&t=153352&sid=fd8394a8ef412b3562390350ea16c5fb&start=45

[18]  Amethyst Schaber, response to question on the Neurowonderful Tumblr site:

http://neurowonderful.tumblr.com/post/104511295106/lesmis5-so-my-sister-just-threw-the-biggest.

[19] Sparrow Rose Jones, “ABA,” from the Unstrange Mind blog:

https://unstrangemind.wordpress.com/2014/10/07/aba/.

[20] Tatja Hirvikoski, Ellenor Mittendorfer-Rutz, Marcus Boman, Henrik Larsson,

Paul Lichtenstein and Sven Bölte, “Premature Mortality in Autism Spectrum Disorder,” British Journal of Psychiatry 208: 3 (2016), 232-38.  See also the report by the British organization Autistica, “Personal Tragedies, Public Crisis,” p. 5:

https://www.autistica.org.uk/wp-content/uploads/2016/03/Personal-tragedies-public-crisis.pdf.

[21] Dani Alexis, “On Functioning and ‘Functioning’,” on the Autistic Academic blog:

https://autisticacademic.com/tag/indistinguishable-from-peers/.

 

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.

Please Help Me with Talk

Hi Everyone.  In a couple of weeks I am giving a talk to one of the leading clinical psychology programs in the United States, on “Autism and the Normalization Agenda.”  Very little of the material in this talk is original–most of you will be very familiar with these ideas.  My real goal is to bring the writings of autistic adults to the attention of these psychologists (who probably don’t even know that such writings exist).

My next two posts will be the first and second parts of the talk.  The first part is just general background–the second part is the one where I want to let autistic writers speak for themselves. (If I can figure out the technology, I hope to embed part of one of Amethyst Schraber’s videos in my powerpoint too.)

Any corrections or additions to either part will be very much appreciated.  Thanks.