Tag Archives: Autism

Making Noise

The “disruptive” behaviors of autistic students, commonly adduced in arguments against inclusive education, actually fall into several different categories.  There are the “noisy” behaviors, the “movement” behaviors, and then—much more problematic and harder to defend—the “injurious” behaviors.  I would like to address each in turn.  First:  the “noisy” behaviors.

 

I have what’s called “cough-variant” asthma—instead of wheezing when I have an asthma attack, I cough.  I’ve had this all my life, but when I was a child it went un-diagnosed and untreated, and I lived with two  chain-smoking parents.  As a result, I did a LOT of coughing.  Sometimes it was just intermittent mild barking, but when I got sick—as I did at least three or four times a year–it became an almost constant, deep-chested, disgustingly gooey, hacking that usually went on for several weeks.  At these times, I coughed all day at school, seldom stopping except to gasp for breath.  Once, in middle school, Suzie H. indignantly informed me that my coughing had made her fail a test.   And in retrospect, I suspect that my coughing distracted and annoyed other students on a regular basis.  But no one ever complained to the teacher or the school administration about it, no teacher ever even mentioned it to me, and I never got in trouble for all the noise I was making.  Presumably, if they thought about it at all, they assumed, correctly, that it was beyond my control.

 

Students with autism who make noise in the classroom seldom enjoy the same tolerance.  A significant proportion of autistic children engage in regular vocalizations—making random sounds, or repeating words or phrases to themselves—often without even thinking about it.  It’s just something they do.  Others “stim” by tapping on their desks with pencils or their fingers—again, without even thinking about it.   These activities are usually beyond their control, just as my coughing was.  Yet unlike my coughing, this autistic noise-making tends to be seen as extremely problematic, as “disruptive” to the classroom.  Other students, teachers, and administrators get angry, assuming that the autistic kids are doing it “on purpose,” and could “stop if they wanted to.”  In reality, however, the kids don’t usually realize that they are making noise.  If confronted, they either stop for a while and then unconsciously start up again, or they become agitated and do whatever they have been told to stop doing even more.  And then the presumption becomes that they are “defiant.”

 

The fact is, however, that classrooms are almost never quiet, peaceful places in which everyone listens attentively to the teacher.  Classes are constantly being disrupted by noises outside the school (construction, garbage trucks, sirens, kids laughing and yelling on the playground, etc.),  within the school (squeaky shoes in the hallway, announcements on the public address system, fire alarms, etc.), and within the classroom itself (class pets squeaking and rustling, kids dropping books, coughing, sneezing, and whispering to each other).  If the noises made by autistic students could be accepted as just one among a number of similar distractions, if the noise could be explained to the other students in those terms, and then compensated for by strategic seating, the use of padded cubicles, and the substitution of other forms of self-soothing for autistic students whenever possible, then one of the main obstacles to inclusion could be overcome.  But this would require both teachers and students to look at these behaviors in a different and more tolerant way.

 

 

 

 

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PLACEMENT: WHERE DO AUTISTIC STUDENTS LEARN BEST?

 

By law, students with autism are entitled to a free, appropriate, public education in the “least restrictive environment” that is “appropriate” for them.  But exactly what environment that should be is an extremely tricky question.  The educational placement of autistic students has given rise to explosive debates in newspapers, on twitter feeds, and during legislative sessions, as well as in EIP meetings, law courts, and even family gatherings.  One reason for this is that every single autistic student is different, and what works for one, will almost by definition not work for others.  But all too often, other factors—which should legally be irrelevant—come into play.  One recent study, for example, has shown that individual state policies and finances may make as much difference as a student’s abilities in determining his or her placement.[1]

 

The inclusion of autistic students in mainstream classes, alongside their neurotypical peers throughout the day, is theoretically the gold standard, the “least restrictive” of all educational environments.  However, full inclusion is also the most contentious form of placement, and not usually for the right reasons.   Emotion, ideology, and prejudice shape the arguments of both opponents and proponents of inclusion. [2]

 

On the one hand, it seems clear that full inclusion offers autistic children their best chance for a good education that can lead to college, employment, and independence.  In every other setting (except, under some circumstances, the homeschool), educational offerings are much more limited and future opportunities restricted.  Segregated special education classes and separate “autism schools” usually offer little in the way of real academics, even though they may be excellent at teaching functional living and social skills.  As a result, parents who believe that their kids are capable of academic achievement are often prepared to fight like grizzly bears to keep their kids in the mainstream classroom for all or most of the day.[3]

 

Grizzliness is necessary because while many teachers and school administrators support inclusion whenever possible, other educators—along with some public figures and some parents of neurotypical students—are vehemently opposed to it.  The reasons given for this vary, but the central claim is that autistic students (usually all lumped together in these arguments, despite the huge differences among them) behave in ways that are disruptive to their classmates and the school.

 

According to a 1994 memorandum from the federal Office of Special Education, excessively disruptive behavior can be used as a rationale to remove a child from an inclusive educational setting:

 

If a student with a disability has behavioral problems that are so disruptive in a regular classroom that the education of other students is significantly impaired, the needs of the disabled student cannot be met in that environment.

However, before making such a determination, school districts must ensure that consideration has been given to the full range of supplementary aids and services that could be provided to the student in the regular educational environment to accommodate the unique needs of the disabled student. If the placement team determines that even with the provision of supplementary aids and services, that student’s IEP could not be implemented satisfactorily in the regular educational environment, that placement would not be the LRE placement for that student at the particular time, because her or his unique educational needs could not be met in that setting. [4]

But precisely what behaviors reach the “so disruptive” threshold?  And what proportion of autistic students actually do disrupt classes any more than their neurotypical classmates?  These questions will be the subject of the next few posts.

 

 

 

 

[1] Jennifer Kurth, “Educational Placement of Students with Autism,” Focus on Autism and Other Developmental Disabilities 30 (2015), pp. 249-56.

[2] Note, for example, the over-the-top language found on journalist Richard Moore’s Autism page:  http://www.rmmoore1.com/autism.  He describes autism as an “epidemic” and compares it to a natural disaster:  “Now, in the United States and around the globe, a powerful earthquake of arguable origin has set off yet another health tsunami, which at this very moment is racing across the ocean of our lives, already affecting millions and millions, with millions more still in its path. This time it is a neurological disorder called autism, or Autism Spectrum Disorder…”  In writing about education, Moore insists that autistic students (all lumped together) simply “learn differently” than neurotypical or even other special needs students do.   He describes demands for inclusion as largely driven by ideology (while ignoring the “different and less” ideology that drives his own writing).

[3] E.g., the post “Autism and IEPs and Grizzly Mommas . . . Oh My!!”  on the Autism Sparkles blog:  https://autismsparkles.wordpress.com/2013/02/22/autism-and-ieps-and-grizzly-mommas-oh-my/.  Bear in mind (pun intended), that these ferocious parents are not always right—sometimes the mainstream classroom is simply intolerable for their children, who would be better served as home (if possible), or in a special education classroom with additional academic programming to suit their needs.  More on this below.

[4] Office of Special Education and Rehabilitative Services, “Questions and Answers on Least Restrictive Environment (LRE) Requirements of the Idea,” November 23, 1994.

Teaching Autistic Children: Perceptual Issues

Another significant, but seldom-recognized problem has to do with perceptual issues.[1]  A student cannot learn if she cannot see or hear what is being presented to her.[2] Very, very few public school teachers understand how perceptual systems—which directly affect learning—work in autistic students.  For example:  many (not all—remember: each autistic individual is different) have difficulties with auditory processing.[3]  It may take them a fraction of a second longer that neurotypical students to turn spoken sounds into intelligible speech, and this is just long enough to cause significant problems, as they constantly try to play “catch-up” with the rest of the class  They may also find it difficult to separate the significant sounds they are supposed to be hearing from background noise.  As a result, these students are often unable to follow a lecture or video, or comply with their teacher’s spoken demands.  Group work is even worse, as the autistic student struggles to separate what his or her own group is saying from what is going on in other groups around the classroom.  There are work-arounds for auditory processing issues, such as special seating near the front of the classroom, close-captioning for videos, the provision of both spoken and written instructions, exemption from group work, etc.  But the teacher must first be aware of the problem before solutions can be found.  Many a well-meaning and thoughtful teacher has caused frustration, withdrawal, even “meltdowns,” by insisting on a phonics-based approach to reading for a student with poor auditory processing skills. For such a student, a “whole-word” approach might work better. [4]

 

Other autistic kids have trouble with visual processing.[5]  They may be able to see clearly only with peripheral vision, in which case a teacher who insists that they “look at me” is actually ensuring that they will not see what the teacher is doing.  Meares-Irlen, “Scotopic Sensitivity” or “visual stress” syndrome is also often present in autistic kids.  Letters, words and numbers will appear to move around on the pages of a book or on a classroom whiteboard, making it almost impossible to follow what is being taught.  Some students affected by this syndrome may be helped with colored overlays or tinted glasses.[6]  When these don’t work, there are other work-arounds.  My own daughter, for example, struggles with math problems because of “floating” numbers.  She has developed her own (admittedly, rather time-consuming) system of writing out the problems using different colored pencils for different rows or columns.  The colors helped her keep numbers in their proper places.  Reading on an Ipad, with a font size large enough so that only a single line of text appears on the screen can help those with this syndrome with reading.  Teachers can help students find ways to deal with visual processing issues, but—again—only if they are aware of these issues in the first place.

 

If students can’t make sense of what they hear or see in the classroom, they will inevitably fail in school.  It is up to trained specialists to diagnose their auditory or visual problems, and it is then up to their teachers to find ways to help them overcome these perceptual issues.

 

 

 

 

[1] On sensory perception issues in autistic schoolchildren, see Olga Bogdashina’s excellent Sensory Perceptual Issues in Autism and Aspergers Syndrome (London:  Jessica Kingsley, 2003).  On sensory experience in autism more generally, see J. Horder, C. Wilson, M. Mendez and D. Murphy, “Autistic Traits and Abnormal Sensory Experiences in Adults,” Journal of Autism and Developmental Disorders 44 (2014), 1461-69.

[2] There are work-arounds, of course, used in schools for the deaf or blind, but most autistic students are not actually deaf or blind, so these techniques may not work for them, even in the unlikely case that they are offered them.

[3] P. Dawes, D. Bishop, T. Sirimanna, et al.  [“Profile and Aetiology of Children Diagnosed with Auditory Processing Disorder (APD),” International Journal of Pediatric Otorhinolaryngology, 72 (2008), 483–89], found that about 9% of children referred to a clinic specializing in auditory processing disorders also had a diagnosis of autism; this suggests that autistic children are much more likely to have an APD than neurotypical children.

[4] Leslie Broun, “Teaching Students with Autistic Spectrum Disorders to Read,” Teaching Exceptional Children 36 (2004), 36-40.  See also: Kate Nation, Paula Clarke, Barry White, and Christine Williams, “Patterns of Reading Ability in Children with Autism Spectrum Disorder,” Journal of Autism and Developmental Disorders 36 (2006), 911-19;  Kelly Whalon, Stephanie al Otaiba, and Monica Delano, “Evidence-Based Reading Instruction for Individuals with Autism Spectrum Disorders,” Focus on Autism and Other Developmental Disabilities 24 (2009), 3-16; Janet Spector, “Sight Word Instruction for Children with Autism:  An Evaluation of the Evidence Base,” Journal of Autism and Developmental Disorders 41 (2011), 1411-22.

[5] Unfortunately, the scientific study of visual processing issues in autism is still in its infancy.  Even the quite recent articles often fail to look beyond the most basic issues of face and pattern recognition:  e.g., Marlene Behrman, “Visual Processing,” in the Encyclopedia of Autism Spectrum Disorders, ed. F. Volker, P. Pelphrey, and D. Powers (New York:  Springer, 2013), pp. 3290-99.  Experienced teachers may offer more reliable information on how visual issues affect schoolwork:  e.g., Bogdashina, Sensory Perceptual Issues in Autism.

[6] The Irlen method of using colored overlays and glasses to treat these individuals remains highly controversial, but has proved life-changing for some autistic individuals.  A famous example is that of the late Donna Williams, the Australian writer and autism activist.

The Challenges Facing Autistic Children in America’s Schools

After 1990, the number of young people with autism diagnoses educated in public schools in the United States rose rapidly;  the legal mandates of IDEA ensured that still others were educated in private institutions paid for with public funds.  Overall, then, access to educational institutions has improved dramatically for autistic children within recent decades.  It is doubtful, though, whether many of these children have reached their full educational potential.  Despite greatly improved access to schools, huge challenges continue to face autistic children seeking an education.  Few teachers are adequately trained to meet their learning needs, and indeed, those needs are still poorly understood even by “experts.”  The educational environment remains hostile, from both a sensory and a social perspective.  School buildings and classrooms are full of often unnecessary sensory stressors and distractions, not to mention intimidating bullies.  Moreover, autistic students continue to be disproportionately subject to severe and even life-threatening discipline, often for fairly minor infractions of the rules. These challenges will be the subject of the next few posts on this blog.

The most serious problem by far facing autistic students in American schools, however, is the presumption of stupidity, which leads to appallingly low academic expectations.  In one recent research project, only 56% of the autistic students studied had any academic skills at all listed in their IEP goals.  Their teachers simply did not expect them to reach grade-level academic content standards.[1]  This is because far too many teachers continue to associate autism with intellectual disability, even though, as we have already seen, current scientific research indicates that autistic people have the same range of intellectual abilities as everyone else.  The ability to speak (expressive language), depending as it does on physical capabilities, is certainly not a good indicator of intelligence.  Nevertheless, far too many (indeed, most) schools continue to assign empty labels like “high-functioning” or “low-functioning” to their autistic students, based on speaking ability and extremely problematic I.Q. testing.  Those labelled “low-functioning” are generally considered intellectually disabled.  They tend to be be shunted off into special education classrooms, which provide some life-skill and social-skill training, but often almost nothing in the way of academics.

 

One such individual, Michael Weinstein, describes his school experience in this way:

The school officials tested me and said I had an IQ of less than 70 and would never get a high school diploma, so I spent a lot of time learning how to wipe off cafeteria tables, sort utensils, and make little arts and crafts projects. Although I understood everything that was said to me, I could not indicate in any way, verbally or non-verbally, that I understood them.[2]

Eventually Mr. Weinstein learned to type, enabling him to demonstrate his genius-level I.Q. and his exceptional skills in mathematics.  Similarly, Philip Reyes reports that his teachers “were well meaning but believed I could not understand much of anything because I could not talk or write to communicate that I was smart and understood everything going on around me.”  Instead, Philip says, he was trained like an animal in school, “as everyone tried to make me act normally with candy rewards.”[3]

There is no inherent reason why special education classrooms cannot be intellectually challenging, but in practice they seldom are.  Bright young people may spend years in these classes hearing basic arithmetic facts or the names of colors repeated over and over again, but learning nothing that might later help them as either workers or citizens.  Ido Kedar, another non-speaking autistic, fiercely criticizes the thinking behind these practices:  “The assumption that people with severe autism all have impaired thinking has resulted in the underestimating of the true abilities of thousands of individuals, lack of adequate educational opportunities, isolation, loneliness, boredom, frustration, hopelessness, and a life of entrapment within one’s own body. This price is too high.”[4]

 

[1] Sara Witmer, and Summer Ferreri, “Alignment of Instruction, Expectations and Accountability Testing for Students with Autism Spectrum Disorder,” Focus on Autism and Other Developmental Disabilities 29: 3 (2014), 136-38.

[2] Michael Weinstein, “Life with Autism” on the Golden Hat Foundation blog:  http://www.goldenhatfoundation.org/about-us/blog/125-golden-hat-foundation-blog-70211

[3] “Communication Device Opens Up the World to Nonverbal Autistic Boy, Buffalo Evening News 12/3/15:  http://buffalonews.com/2015/12/02/communication-device-opens-up-the-world-to-nonverbal-autistic-boy/.

[4] Ido Kedar, “Motor Difficulties in Severe Autism,” on the Ido in Autismland blog:  http://idoinautismland.com/?p=376.

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.

 

 

The Education of Autistic Children, 1950-1975

This post will focus on the education of autistic children in the period between 1950 (shortly after Leo Kanner’s original articles on autism were published) and 1975, the year in which the groundbreaking Education for All Handicapped Children Act was passed.

 

This is a complicated topic to unpack, because the vast majority of adults considered autistic today did not have that label when they were children, back in the 1950s, 1960s and early 1970s.  Most adults now diagnosed with “high functioning autism” or with “Aspergers Syndrome,”[1] would never have been considered autistic in childhood because they did not meet Kanner’s strict diagnostic criteria (the only criteria then recognized in the United States).  They might have been considered “weird” or “eccentric” by those around them, but they usually had no formal diagnosis.  (An exception was Temple Grandin, famous today for her work in animal science and her advocacy on behalf of people with autism.  Her diagnosis in childhood was “brain-damaged”—only much later was it recognized that she was autistic. [2])  On the other hand, most adults who are today described as “low-functioning” autistics were incorrectly diagnosed in childhood as either psychotic, or intellectually disabled (“mentally retarded” in the language of the period), or both.  Only a tiny number of children who happened to come to the attention of the small number of researchers interested in the subject, and who met Kanner’s criteria, were ever actually diagnosed as “autistic.”  What this means is that we will need to distinguish in what follows between the ways in which these three groups—those who could pass as more or less “normal,” those who were considered either mentally retarded or mentally ill, and the tiny number actually diagnosed as “autistic”—were educated in the past.

 

Before 1975, most undiagnosed “high-functioning” autistics attended the same schools as their siblings, and usually without any support services, unless they had additional disabilities, or unless some thoughtful teacher came to their assistance.  A few of them flourished.  Others report that they struggled painfully through the system, wrestling with learning problems that neither they nor their teachers understood.  Stephen Shore, who now has a Ph.D. in Special Education and holds a faculty position at Adelphi University, remembers that in public school he was usually behind the other children in math and reading.  Indeed, Shore’s first grade teacher told his parents that he would never be able to do math.  (In college, however, he successfully completed calculus and statistics, and earned a degree in accounting).[3]  It is surprising, in fact, how many autistic adults report struggling with math in childhood, given the widespread assumption today that autistics are somehow more attuned to math than to studies that require sophisticated use of language.  Dawn Prince-Hughes (who later earned a Ph.D. in Anthropology, became an expert in primate behavior, and wrote a number of books on that subject) recalls the horrible year in third grade when she both developed severe asthma and encountered a particularly unsympathetic teacher.  This teacher punished her for her unexplained failings in math by refusing to let her engage in the reading and writing assignments at which she excelled.  The teacher also announced to the entire third-grade class Prince’s failing math grades, as well as the fact that she was being tested for mental retardation.[4]

In addition to their academic struggles, these undiagnosed children almost always suffered from horrendous bullying from both teachers and classmates.[5]   Real and threatened beatings, tripping, pushing, being shut in lockers, suffering “swirlies” in the toilet and other forms of humiliation, and every kind of insult were commonplace.[6]  For some, this was simply the way things were:  “It never occurred to me at that time to talk to my parents about the problem of bullying in school and the teachers never told them either.  I accepted it as a fact of life.”[7]  Others were driven to retaliate.  After years in elite private schools for girls, Temple Grandin finally got tired of being called names.  When one of her seventh-grade classmates called out, “Retard!  You’re nothing but a retard!”, Grandin threw a book at her, hitting her in the face.  She was expelled from the school as a result.[8]  A few of the children became bullies themselves. [9]  Still others, like John Elder Robison, simply found it too difficult to cope with the sensory and social stresses of school, and dropped or failed out.[10]

 

But what about the other two groups, the tiny few with an actual autism diagnosis, and the much larger number considered mentally retarded or psychotic?  Before 1975, these children seldom received much schooling at all.  Some parents attempted to place their diagnosed child in the public schools, but the experiment seldom lasted more than a few months before the child was either withdrawn or expelled.[11]   A few well-informed or well-connected families managed to get their child into one of a handful of educational establishments designed specifically for the “severely damaged” or “profoundly disabled.”[12]  These establishments tended to focus on teaching functional living skills (toileting, dressing, speaking), but they sometimes offered the basics of reading, writing and arithmetic for the children who who it was believed could manage those subjects.[14]  Charles Martel Hale, Jr., for example, who was non-verbal and labelled at the time “severely to profoundly mentally retarded,” attended an apparently high quality programs in Queens, New York in the early to mid 1970s. He was taught some living skills, but no academics.  However, long before he finally learned to communicate on the computer and typewriter in the 1990s, he had already taught himself to add, subtract and multiply by listening to conversations and television programs.[13]

However, most “autistic,” “psychotic” or “mentally retarded” children were—on the advice of doctors and other professionals—swiftly shunted into psychiatric institutions or homes for the “feeble-minded,” and left to fend for themselves.[15]  Tom McKean, who had attended general education classrooms in his neighborhood school from kindergarten through third grade, before being transferred to classes for the Learning Disabled, was finally diagnosed as autistic in seventh grade and promptly transferred to a psychiatric institution.[16]  Many of the institutions in which these children were confined called themselves “schools,” but few offered much in the way of an education.  They might provide various forms of vocational training, so that residents could help “earn their keep.”  Most, though, were simply warehouses, where autistic children (along with many others) lived in ignorance and squalor, exposed to hunger, cold, and disease, and subject to abuse by older children and adult inmates and staff.[18]

 

 

[1] The labels “high-functioning” and “low-functioning,” although very widely used today, bear very little relationship to reality and should probably be avoided—although that is the subject for another post.  The latest edition of the Diagnostic and Statistical Manual (DSM) of the American Psychological Association no longer recognizes Aspergers Syndrome as a diagnostic category.  However, the phrase is still common in everyday usage.

[2] Temple Grandin and Richard Panek, “The Autistic Brain:  The origins of the diagnosis of autism—and the parental guilt-tripping that went along with it,” Slate Magazine (May, 2013):

http://www.slate.com/articles/health_and_science/medical_examiner/2013/05/temple_grandin_s_the_autistic_brain_an_excerpt_on_the_history_of_the_autism.htm.

[3] Stephen Shore, Beyond the Wall:  Personal Experiences with Autism and Asperger Syndrome (Shawnee Mission, KS:  Autism Asperger Publishing Co., 2002;  2nd ed. 2003), p. 53.

[4] Dawn Prince-Hughes, Songs of the Gorilla Nation:  My Journey through Autism (New York:  Random House, 2004), pp. 41-44.   Liane Holliday Willey also reports that she “hated and was terrible in math:”  Pretending to Be Normal:  Living with Aspergers Syndrome (London:  Jessica Kingsley Publishers, 1999; expanded ed., 2014), p. 47.

[5] Sparrow Rose Jones, “Autistic Pride Day 2015—Letter to Myself as a Child,” on the Unstrange Mind blog:  https://unstrangemind.wordpress.com/2015/06/18/autistic-pride-day-2015-letter-to-myself-as-a-child/ .

[6] There will be more on this topic in another post.

[7] Stephen Shore, Beyond the Wall:  Personal Experiences with Autism and Asperger Syndrome (Shawnee Mission, KS:  Autism Asperger Publishing Co., 2002;  2nd ed. 2003), p. 56.

[8] Temple Grandin, with Margaret Scariano, Emergence:  Labeled Autistic  (Novato, CA:  Arena Press, 1986; reissued with additional material:  New York:  Grand Central Press, 2005), pg. 68.

[9] Cynthia Kim, Nerdy, Shy and Socially Inappropriate:  A User Guide to an Asperger Life (London and Philadelphia:  Jessica Kingsley, 2015), pp. 12-17.

[10] John Elder Robison, Look Me in the Eye:  My Life with Aspergers (New York:  Broadway Books, 2007), pp. 85-94.

[11] On the exclusion from school of children with an autism diagnosis before 1975, see Anne Donnellan, “An Educational Perspective on Autism: Implications for Curriculum Development and Personnel Development,” in Barbara Wilson and Anneke Thompson, eds., Critical Issues in Educating Autistic Children and Youth (Washington, DC:  United States Department of Education, 1980), p. 53.  For an example of a diagnosed child who spent a short while in the public schools, see Jules Bemporad, “Adults Recollections of a Formerly Autistic Child,” Journal of Autism and Developmental Disorders 9 (1979), p. 184.  Incidentally, the word “formerly” in the article title does not refer to any form of “recovery” from autism.  Instead, the child whose life is recounted has turned into an adult and Bemporad seems unwilling to describe an adult as “autistic.”

[12] E.g., Rud Turnbull, III, The Exceptional Life of Jay Turnbull:  Disability and Dignity in America, 1967-2009 (Amherst, MA:  White Poppy Press, 2011), Chapter 2.

[13] Charles Martel Hale, Jr., “I Had No Means to Shout” (Bloomington, IN:  1stBooks Library, 1999.

[14] The individual interviewed by Jules Bemporad (note 11 above), learned to multiply in such a school—this skill later provided him with great satisfaction. But his school was exceptional.

[15] Wendlyn Alter, “You’ve Come a Long Way Baby:  An Interview with Jerry Alter,” Chalice (April-May, 2014), pp. 11-15, describes how her brother Jerry was hospitalized at the age of 5.

[16] Thomas McKean, Soon Will Come the Light:  A View from Inside the Autism Puzzle (Arlington, TX:  Future Horizons, 1994; 2nd ed. 2001), pp. 3-5.

[18] More on these institutions in a later post.

Help on Education and Sensory Issues

This is a personal post, but it is also directly related to what I’m writing about autism and education.  It has to do with sensory issues (specifically, auditory and visual processing disorders, both of which are quite common among people on the spectrum) and their impact on education.  I have been working my way through education and special education journals, and have yet to see a single article on this subject.  I would really appreciate any personal stories people might have about how they dealt with their own processing issues in school.  I would also love to hear from teachers who know how to work with these issues.  However, back to the personal part.

A, my amazing daughter on the spectrum, is now at university, where she is doing a fantastic job–except for being stuck in math limbo.  She has switched her major from Special Education (which required one math course) to Psychology (which requires a different math course).  Even though she is good at math (not a prodigy, but way better than average), she has not yet been able to complete either of these math courses, and this is holding her back from work in her major.

Math course #1 (for Special Ed), was math concepts for future teachers.  It actually sounded really interesting.  Unfortunately, it was taught entirely through group work, in a crowded room with poor acoustics.  A has an auditory processing disorder (diagnosed early in life), which makes it very difficult for her to follow what’s going on under those circumstances.  Because she couldn’t hear, she couldn’t finish the math course.  This was one of the reasons she changed her major.

Math course #2 is the course her college requires before she can take the Psychology statistics course.  Now, as it happens, she already took (and got an A) in statistics at our  local community college while she was still in high school.  The university gave her credit for that course, but the Psychology Department won’t accept it as THEIR statistics course for reasons that we still can’t figure out.  So she needs to take their stats course.  But before she’s allowed into that course, she needs to take a sort of fundamentals of math course.

It’s possible to place out of the course if you either get a high enough score on the ACT or SAT exam, or if you do well enough on the university’s own placement exam.  This has proved impossible because of her visual processing disorder.  We knew she was having visual issues for years, but she was only diagnosed fairly recently with Meares-Irlen syndrome, which makes words and numbers dance around on the page she’s trying to read.  She has no problem reading text on her Kindle, because it allows her to increase the font size and the spacing between lines to limit the confusing movement.  But the placement exam is given ONLY on the  university’s computer, with no way to compensate for the visual problems.  So–after three unsuccessful tries at the placement exam, she has been relegated to a remedial math course, which will allow her to take the fundamentals course, which will then finally allow her to take the statistics course that she already passed in community college two years ago.

See why we’re frustrated??!!

Back Again

I’ve been silent for a few months–the result of a cancer scare (thank goodness, it turned out to be benign), dear husband’s pneumonia, and various crises among the teens.

At some point I’ll get back to the posts I was doing about the nature of autism (when this turns into a book, those will be part of the introduction).  For now, though, I’m going to start writing about autistic people’s right to an education–specifically, here in the United States, a “free, appropriate, public education” (FAPE).  (There will be a separate chapter in the book on educational rights.)

I would be EXTREMELY grateful to any autistic adults/adults with autism who would be willing to share with me their educational experiences over the last few decades and their thoughts about education today.  When you were in school, were you taught academic material, or merely life skills?  How effectively were you taught?  How were you treated in school–by administrators, teachers, and fellow students?  How do you think children on the autism spectrum can best be taught?

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.