Tag Archives: Autism Acceptance

Reactive “Aggression”: What Autistic People Have to Say

Scientists who study large populations have uncovered several risk factors for aggressive behavior in autistic children—lack of sleep, poor social and communication skills, irritability, etc. (see my last post).  In contrast, autistic people are less likely to focus on general risk factors than to describe their own personal experiences during childhood:  the specific situations in which they threatened or injured others, and the way they felt at the time.  Nevertheless, there are many commonalities among their experiences, commonalities which do not always correspond with what scientists have described.[1]  For example, while scientists tend to assume that all aggression is intentional, many autistic people report having engaged during childhood in unintentional aggression.  One type of unintentional aggression is what I call reactive “aggression”—and I am using quotation marks because I am not sure that what is described below truly qualifies as aggression at all.

 

Reactive “Aggression”

I have an instinctive fear of snakes.  It’s not a phobia.  If I have time to think about it, I can talk about and look at snakes.  I even petted a snake once, to show my kids that reptiles aren’t dangerous.  But if I am out walking and a harmless little garter snake wiggles across the sidewalk in front of me, I immediately find myself jumping a foot in the air and then running away.  And if—God forbid—a snake were to fall out of a tree onto my shoulder, the poor thing would get whacked hard to get it off me, even though I have no conscious intention of hurting it. My reaction is purely instinctive.

Many autistic people report a similar response to being touched by other people, which they may find intensely painful: “The pain I feel when someone touches me is like feeling needles that sting my flesh.”[2]  Or if touch is not exactly painful, it may still be intolerable in other ways:

I don’t feel pain but I cannot tolerate pressure, which is what I feel physically when touched, to the point where my brain perceives being touched as being crushed, and transmits a threat response. I also feel a complete sense of psychological invasion as others have said, and I get an immediate irresistible sense of nononono that I have to get away from. Can’t abide being touched.[3]

Averse to touch, autistic people may be able to avoid lashing out if they get some advance warning.  But if they are taken by surprise, they respond instinctively, in the same way I would respond to a snake suddenly landing on me:

 

i have often hit people who have touched me without warning, particularly if they touch me from behind, a sharp elbow flies backwards. however this is not advisable as people take offense to it & some hit back! it is a reflex reaction for me, i have no concious control over it.[4]

 

 

It is common for autistic students to hit out wildly when they get touched, and schools often interpret these reactive behaviors as aggressive.  The result is punishment, usually in the form of suspension or (for repeated incidents) expulsion:

 

I got suspended for hitting kids when they got too close (I can feel people’s energy or “chi” when I get close to them or they get close to me and it is physicaly painful) [5]

However, autistic writers often remember these childhood reactions as uncontrollable:

Until about the age of 12 or 13 I’d regularly scream and hit people for touching me. Not so bad these days but I still hate unwanted touch. When I was younger kids at school thought it was hilarious to poke me until I lost my temper. Being poked is extremely painful, I’m very sensitive to touch. I try telling people this and they think I’m exaggerating.[6]

Did any of you have a problem as a kid where if a kid hurt you (even unintentionally), you would hit them without thinking? I used to get suspended multiple times year for punching other kids because they pinched me between a desk or bumped me while playing soccer. It was a reflex I was unable to control until I was older.[7]

As both of the last quotations indicate, some children learn to control their reactions as they grow older.  However, even for adults this may require a tremendous amount of effort:

 

if someone touches my face, my cheek especially, i can barely control myself from hitting that person. being stuck in a slow moving crowd, i feel trapped and want to scream my lungs out. i feel like pushing people aside violently, i don’t do it because it’s wrong, but i slam my fist in an open palm and growl like an animal. i go crazy and no one notices.[8]

 

Children in general have a much more limited ability to maintain control over their reflexes.

 

 

The reflexive childhood “aggressor” usually does not intend to hurt anyone, knows perfectly well that hitting others is wrong, and after the fact often feels very badly about the way they have behaved:

When I was a kid-I was at a friends house when a friend of his . . . came up from behind and grabbed me-now I do not like to be touched or grabbed from behind-now I know its because of AS-I did not know it was him and I turned around and punched who ever it was in the mouth and it was him-he ran crying and I felt so bad that I hurt this boy who was just playing and meant no harm but I thought I was being attacked and hit this poor kid-I felt really bad,so bad I pledged I would never hurt anyone for any reason ever again and I still live up to that to this day.It still upsets me to think about the incident and the thought of hurting an innocent,harmless person.[9]

Should reactions which are instinctive, difficult to control, engaged in with no intent to harm, and often deeply regretted afterwards be consider “aggression”?  I would have to say “No.”  Certainly there will be a need for behavior interventions, to help these kids learn not to react so strongly to unexpected touch, but punishment seems inappropriate in such cases.

 

 

 

[1] In what follows, I will be drawing primarily on posts from the Wrong Planet website, which has thousands of autistic subscribers.  Like other quick posts on social media sites, these may contain errors of spelling and grammar.  This is simply the nature of such posts, which are usually composed in a hurry.

[2] Kairi96, in in the “I Feel Pain When Other People Touch Me” discussion:

http://wrongplanet.net/forums/viewtopic.php?t=219950.

[3] C2V, in the “I Feel Pain When Other People Touch Me” discussion:

http://wrongplanet.net/forums/viewtopic.php?t=219950.

[4] Sally, in the “About Hating Touch..” discussion: http://wrongplanet.net/forums/viewtopic.php?t=48437.

[5] PunkyKat, in the “Aspies—Ever Get Suspended/Expeled” discussion:

http://wrongplanet.net/forums/viewtopic.php?f=14&t=83101.

[6] Squirsh, in the “Do You Get Irritated When People Touch You?” discussion: http://wrongplanet.net/forums/viewtopic.php?t=169499.

[7] bluecurry, in the “What Were You Like in Elementary School” discussion:  https://wrongplanet.net/forums/viewtopic.php?t=226220.

[8] Felinesaresuperior, in the “Odd Things That Make You Feel Irrationally Angry” discussion:

https://wrongplanet.net/forums/viewtopic.php?t=189358.

[9] Radiofixr, in the “Did Anyone Else LIKE Being Bullied?” discussion: http://wrongplanet.net/forums/viewtopic.php?t=129369.

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Aggression Against Self and Others: What the Scientists Have to Say

Autistic students have, in the past, broken their teacher’s arms, knocked out their teeth, and even given them concussions.  There have been incidents in which students have banged their own heads against walls, scratched their arms until they bled, and bitten their fingers.  There have also been incidents in which their classmates have been injured.  So schools are rightly concerned about autistic kids engaging in behaviors—self-injury, punching, biting, and kicking—that are potentially dangerous to themselves or others.

Nevertheless, schools cannot treat every autistic child as a time-bomb, ready to explode at any moment.  There are certainly some students on the autism spectrum who must be treated with great care, but there are also many who have outbursts only under extreme circumstances, and still others who pose no threat at all.  Unfortunately, the research on the prevalence of aggression in this population remains limited, and what exists has various weaknesses.  Nevertheless, it is worth reviewing, because it shows that “the violent autistic child” is not nearly as common as the general public, as well as many teachers and school administrators, assume.

Estimates of “self-injurious behavior” (SIB), for example, have been skewed by the populations sampled.  One group of researchers looked at 250 children and teens with autism who were enrolled in genetic studies at the Hospital for Sick Children in Toronto, Canada.  They found that 52.3% had engaged in SIB at some point in their life.[1]  This study was often cited in the years after its publication in 2012, and the idea that more than half of autistic kids injured themselves became widely accepted.  In 2016, however, a different group of scholars published the results of their research on more than 8,000 autistic children tracked by the Autism and Developmental Disabilities Monitoring Network in the United States.  They pointed out that the 2012 study, conducted in a hospital, had “over-sampled” kids with challenging behaviors and major impairments.  The 2016 study placed the percentage of autistic kids who self-injured at around 27.7%.  This is still a significant number, but it is only about half that of the earlier, widely-cited study.[2]

Research on aggression against other people has been complicated by disagreements about terminology (the authors of one study noted that other researchers were reluctant even to use the term “aggression”[3]) and weakened by failure to distinguish clearly between the prevalence and persistence of different forms of aggression.  One study, based on a fairly large sample of children, concluded that 68% had at one time or another demonstrated aggression against their care-givers, and 49% had at one time or another been aggressive towards non-caregivers.[4]  It should be noted, however, that these figures covered the children’s entire lifetime, including the period when they were toddlers (who generally tend to do a fair amount of hitting and kicking, even if they are neurotypical.)  When the researchers examined behavior at the time of the study, they found that 56% of the autistic children sampled were “currently” aggressive towards their caregivers, while 32% were aggressive towards non-caregivers.

The authors of this study focused on these general numbers, which they claimed showed that the prevalence of aggression among autistic children was “high.”  However, when they broke down their figures still further, to look at the prevalence of different kinds of violence, it turns out that a much smaller number (35.4% of all the kids in the study) were currently engaged in what the researchers called “definite aggression”—hitting, kicking, punching, etc.  The other children in the “aggressive” category (roughly 25% of the total) were currently practicing only “mild aggression,” defined as playing roughly, verbally threatening other people, or lashing out after being provoked.  Most importantly, 39.8% of the sample showed no aggressive behavior at all.   lt turns out, then, that of the autistic kids in this study, more were currently avoiding all aggressive behaviors than were involved in “definite aggression.”  If we combine the non-aggressive and mildly aggressive categories, it turns out that 65% of the sample studied actually seem pretty similar to “normal” kids.  However, in practice it is quite difficult to know how autistic aggression compares with neurotypical aggression, since studies on aggression in autism generally involve no control group of non-autistic children.[5]

A number of researchers have examined the “risk factors” for self-injurious and aggressive behaviors.  In terms of SIB, one study found that abnormal sensory processing was the most important predictor of self-injury[6]  Other researchers conclude that SIB is particularly common not only in those with abnormal sensory processing, but also those with regressive forms of autism, irritability, hyper-activity, mood issues, sleep issues, and severe communication limitations.[7]  There are some indications that SIB may decline as communication improves over time.[8]  Factors associated with aggression against others include youth (aggressive behavior declines with age among autistic as well as neurotypical children), social and communication problems, higher levels of “repetitive behaviors” (stimming), and—oddly enough—higher family income.[9]  A very high percentage of autistic children and adolescents (50-80%) suffer from sleep problems.  One recent study found a particularly significant correlation between lack of sleep and various problem behaviors, including hyperactivity, irritability, and physical aggression in autistic youth.[10]

The scientific evidence, then, suggests that a significant minority of young people with autism will engage in self-injurious behaviors (27.7%) and significant aggression against others (35.4%).  (A further area of concern is “meltdown” behavior, which I will address in another post.)  According to scientists, the individuals who engage in these behaviors tend to be younger children, those who have gone through early regression, those who are irritable and hyperactive due to poor sleep, those unable to communicate in other ways, and those with the kinds of sensory processing that make the world unpredictable and often painful.  Teachers and administrators would do well to consider and try to mitigate these factors before they condemn autistic children who “act out.”

 

 

 

[1] Emma Duerden, Hannah Oatley, Kathleen Mak-Fan, et al., “Risk Factors Associated with Self-Injurious Behaviors in Children and Adolescents with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 42 (2012), 2460-70.

[2] Gnakub Soke, Steven Rosenberg, Richard Hamman, et al., “Brief Report:  Prevalence of Self-Injurious Behaviors among Children with Autism Spectrum Disorder:  A Population-Based Study,” Journal of Autism and Developmental Disorders 46 (2016), 3607-14.

[3] Cristan Farmer and Michael Aman, “Aggressive Behavior in a Sample of Children with Autism Spectrum Disorders,” Research in Autism Spectrum Disorders 5 (2011), 317-23.

[4] Stephen Kanne and Micah Mazurek, “Aggression in Children and Adolescents with ASD:  Prevalence and Risk Factors,” Journal of Autism and Developmental Disorders 41 (2011), 926-37.  The sample was made up of children enrolled in a multi-university research study on autism, which—like the hospital study mentioned above—probably “oversampled” those with challenging behaviors.

[5] There are many studies of aggressive behavior among children who have suffered trauma, who have been raised in poverty, etc.  I have found it difficult to find estimates for aggression among neurotypical children as a whole.  And in any case, different measures are used in studies on autistic and studies on non-autistic children, which makes comparisons virtually impossible.

[6] Emma Duerden, Hannah Oatley, Kathleen Mak-Fan, et al., “Risk Factors Associated with Self-Injurious Behaviors in Children and Adolescents with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 42 (2012), 2460-70

[7] G. Soke, S. Rosenberg, R. Hamman, et al., “Factors Associated with Self-Injurious Behaviors in Children with Autism Spectrum Disorders:  Findings from Two Large National Samples,” Journal of Autism and Developmental Disorders 47 (2017), 285-96;

[8] Jeffrey Danforth, “Self-Injurious Behavior (SIB),” in Fred Volkmar, Encyclopedia of Autism Spectrum Disorders (New York:  Springer, 2013), 110-39.

[9]  Stephen Kanne and Micah Mazurek, “Aggression in Children and Adolescents with ASD:  Prevalence and Risk Factors,” Journal of Autism and Developmental Disorders 41 (2011), 926-37.  One might speculate that aggressive behaviors are attributed to factors other than autism in children with lower family incomes.

[10] Micah Mazurek and Kristin Sohl, “Sleep and Behavioral Problems in Children with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 46 (2016), 1906-15.

FBAs and BIPs

Teachers often want to move autistic students whose behavior they find disruptive out of their ordinary classrooms and into special education classrooms, or classrooms just for students with autism in the same school, or even into separate schools.  These segregated environments do offer smaller class size and more adult supervision.   However, they almost never provide the same academic opportunities as mainstream classrooms—separate is far from equal.  This is why the Individuals with Disabilities Education Act (IDEA) requires that students with autism be taught in the least restrictive environment possible for them.  And this is why teachers and administrators must take certain steps before changing a student’s placement from a less restrictive to a more restrictive environment.

 

The 1997 and 2004 re-authorizations of IDEA require schools to at least attempt to resolve the problem, by working to change the disruptive behavior, before a student can be removed from the mainstream classroom.  Schools must conduct a Functional Behavioral Assessment (FBA) of the student, to get a better idea of the reasons for the unwanted behaviors, and then use that information to develop and implement a Behavior Intervention Plan (BIP), designed to minimize or eliminate those behaviors.[1]

 

In FBA, data is collected on when and where the target behavior occurs, what its “antecedents” were and what its “consequences” are.  Various instruments are used to track behaviors and what happened just before and after in a systematic way; interviews are also conducted with the teacher, the parents, other adults familiar with the student, and ideally (but, in the case of autistic students, not very often) the student himself or herself.  The person doing the assessment then analyzes all this data in order to determine what function the behavior serves for the student.  (Does it help to attract attention?  Provide sensory stimulation?  Allow the student to escape from difficult tasks?)[2]  Once the function or functions are identified, then the school team (teachers, aides, administrators, psychologists, etc.) can develop a Behavior Intervention Plan.  They can decide how the student’s environment and interactions with others might be modified in order to discourage the disruptive behavior and how the student can be encouraged to engage in more positive behavior.  For example:  if a student tends to scream every time the bells ring for class change or for a fire alarm, then the environment might be modified by covering up nearby alarm bells to dampen the sound.  The teacher could let the student know when regular alarms are about to sound, and the student could be encouraged to put on noise-cancelling headphones when those regular alarms are about to go off.  A student who runs away during transitions from one classroom to another can be given positive attention for learning each of the steps required for a safer transition (stop and wait by the classroom door, hold the teacher’s hand in the hall, etc.).[3]

 

The FBA/BIP combination is the best means we currently have for helping autistic students with “disruptive” behaviors remain in mainstream classes.  However, it is far from being a perfect solution.  One serious problem is that the law only vaguely defines the conditions under which a FBA/BIP is necessary.  The re-authorized IDEA requires them ONLY if the disruptive behavior is considered a “manifestation of the student’s disability”—whatever that means.  State laws and regulations are not much clearer.[4]  In practice, this vagueness allows students to be removed from mainstream classrooms and even removed from ordinary public schools without any attempt to modify their behavior, if that behavior is not obviously a “manifestation” of their disability.  Autistic students engage in many behaviors that can be, and all too often have been, incorrectly understood as “willful” or “manipulative,” rather than arising from their autism.  As a result, many have been moved to more restrictive environments without any effort at all being made to help them.

 

Another problem is lack of expertise.  Ideally, a skilled school psychologist or other experienced specialist would be in charge of the FBA/BIP process.  In practice—especially in impoverished rural or inner city school districts—the burden often falls on teachers, who may have had no training at all in behavior analysis and intervention. [5] However well meaning these teachers may be, they are basically operating on the fly, and their attempts to modify complex student behavior are often ineffective.  And if their efforts fail, the autistic student is generally moved out of the mainstream classroom.

 

A final issue is the very nature of FBA/BIP.  Like ABA, the FBA/BIP process has its roots in the behaviorist school of psychology.  The focus is on observable behaviors rather than on the mental processes that lead to those behaviors.  And in interpreting those behaviors, the emphasis is always on observable antecedents and consequences, which provide some clues to the target behavior’s function for the person engaging in it.  Skilled behavior analysts can often learn why a particular behavior is happening, and can then develop a plan for modifying it.  But the reasons for other behaviors elude them, because the people they are studying actually have complex mental processes, in which long-term memory and reasoning, as well as simple reactions to the environment play a role.

 

No matter how finely honed the instruments used for tracking behavior may be, they are not meant capture the internal experience of the autistic student.  Invisible stressors go unnoticed, especially if the student is never interviewed during the FBA process, but also when an interview has taken place, unless the student is unusually self-aware.  The behavior analyst may not understand the extent of the student’s sleep deprivation, or the impact of chronic stomach pain.  They may not realize that a student who has been systematically bullied for many years has come to see apparently innocuous remarks by teachers and other students as insulting and infuriating.  They may not recognize that a particular smell arouses memories of a traumatic experience many years earlier.

 

Behavior analysts also often miss the cumulative impact of multiple stressors, especially when the earlier stressors are not easily observable.  When a student keeps getting up and using the pencil sharpener in math class immediately after lunch, for example, the behavior team will usually, and quite reasonably, assume that the chaos in the school cafeteria is creating so much stress that the student cannot deal with the demands of math problems immediately afterwards and is trying to escape from them.  They may try to modify the student’s lunchtime experience, by letting him or her eat in another setting.  However, this won’t solve the problem if the demands of math class represent the breaking point in a day that has involved not only the chaos of the lunch room, but also (unobserved) teasing from a sibling during breakfast, (unobserved) bullying on the bus, (unobserved) failure to understand a reading in English class, and (unobserved) feelings of humiliation in gym class.  If the lunchtime experience has been improved, and yet the student keeps on going to the pencil sharpener during math, this may actually represent the student doing his or her best to avoid a complete meltdown, rather than a student trying to “escape task demands.”  Under the circumstances, there are more humane responses than declaring the BIP a failure and taking the student out a math class altogether.

 

I am not trying to suggest that the FBA/BIP process is useless—far from it.  The schools that make use of it are at least trying to keep autistic students in mainstream classrooms, at a time when many other schools are not.  And often Behavior Intervention Plans do actually work, and unwanted behaviors are diminished or eliminated.  But sometimes BIPs don’t work, so teachers, aides and administrators might want to think more broadly and more creatively about ways to help students remain in their classrooms even when “disruptive” behaviors (so long as they are not actually harmful to people or property) continue.

 

I will return to the issue of the more harmful behaviors in the next post.

 

 

 

[1] Cynthia Dieterich, Nicole Snyder and Christine Villani, “Functional Behavior Assessment and Behavior Intervention Plans:  Review of ther Law and Recent Cases,” Brigham Young University Education and Law Journal (2017), 195-217.

[2] On functional assessment of behavior in a clinical setting, see Pamela Neidert, Griffin Rookes, Makenzie Bayles, Jonathan Miller, “Functional Analysis of Problem Behavior,” in Derek Reed, Florence Di Gennaro Reed, and James Luiselli, eds., Handbook of Crisis Intervention and Developmental Disabilities (New York:  Springer, 2013), pp. 147-67.  On FBA as actually practiced in schools, see George Noell and Kristin Gansle, “Introduction to Functional Behavior Assessment,” in Angeleque Akin-Little, Steven Little, Melissa Bray and Thomas Kehle, eds., Behavioral Interventions in Schools:  Evidence-based Positive Strategies (Washington, DC:  American Psychological Association, 2009), pp. 43-58; Alison Bruhn, et al., “Assessing and Treating Stereotypical Behaviors in Classrooms Using a Functional Approach,” Behavioral Disorders 41 (2015), 21-37.

[3] Nancy Stockall and Lindsay Dennis, “Stop the Running:  Addressing Elopement in Young Children with Disabilities,” Young Exceptional Children 19 (2016), 3-13.

[4] Lauren Collins and Perry Zirkel, “Functional Behavior Assessments and Behavior Intervention Plans:  Legal Requirements and Professional Recommendations,” Journal of Positive Behavior Interventions 19 (2017), 180-90.

[5] Michael Couvillon, Lyndal Bullock and Robert Gable, “Tracking Behavior Assessment Methodology and Support Strategies:  A National Survey of How Schools Utilize Functional Behavioral Assessments and Behavior Intervention Plans,” Emotional and Behavioural Difficulties 14 (2009), 215-28; Lindsay Oram, Sarah Owens and Melissa Maras, “Functional Behavior Assessment and Behavior Intervention Plans in Rural Schools:  An Exploration of the Need, Barriers and Recommendations,” Preventing School Failure 60 (2016), 305-10.  Many schools have no trained psychologist available to conduct FBAs.  In 2014-15, there was only one school psychologist for every 1,381 students in the United States:  National Association of School Psychologists,  Shortages in School Psychology: Challenges to Meeting the Growing Needs of U.S. Students and Schools, Research Summaries (Bethesda, MD:  National Association of School Psychologists, 2017).

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.

 

 

 

 

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 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.

Addiction–or Necessity?

There appears to be a serpent in the paradise of stimming.  The activity can be so delightful that it becomes addictive—distracting autistic people not only from what other people want done (schoolwork, hygiene, ABA therapy), but even from they themselves want and need (food, sleep, communication, a meaningful life).  Many autism “experts” and parents worry about the potentially addictive nature of stimming, but most autistic people who write for an online audience unabashedly celebrate their stims, viewing them as wholly positive.  Many of them believe stimming actually helps them function better in the world, by allowing them to concentrate on what they need to do.  For these people, the stim is an effective tool, as well as a source of joy.[1]

There are, however, a few autistics who do view stimming as potentially problematic.  Ido Kedar, for example, writes:

It may start small but it can take over your life- not so much life, but all you do is less important than the stim itself if it is compelling. So, it is an escapist drug and it is addictive. I used to stim a lot as a young boy, especially before I could communicate. Now I stim less because I am engaged in life at a normal level, so I stay in the world as much as I can. I am thrilled about that because I don’t want to live in Autismland flapping, tensing, and twirling my life away.[2]

But to describe stimming as “addictive” certainly does not justify attempts to separate autistic individuals from their stims–especially if the goal is simply to make them “look normal.”  If the stim is a source of pleasure, it should obviously be tolerated at least some of the time.  Why should autistic people not be allowed to experience their own pleasures?  And if a stim actually helps the stimmer achieve his or her goals (in other words, if it helps them focus better)–as many autistics claim–it should obviously be tolerated all of the time.

Intervention may be warranted if stimming seriously detracts from quality of life, or if it is self-injurious.  However, even here, great caution is warranted.  Stimming often serves as an essential coping mechanism (a response to physical or mental distress).  Determining whether this is the case is no simple task, not only because the source of distress may not be obvious to neurotypicals, but also because autistic people (especially children) often have trouble identifying the source of their troubles, let alone communicating them to others.   An autistic child may not realize that the unending buzz of the fluorescent lights in her classroom is setting her nerves on edge, and so she cannot ask her teacher to turn them off.  She may not be aware that she dreads the bullying coming up during recess time, and is stimming to relieve anxiety.  But if it can be determined that physical or mental distress is the cause of the stim, then the next step should be to see whether that distress can be alleviated in some way.  ONLY if the cause of distress can be eliminated or greatly reduced should other activities such as schoolwork, hygiene or therapy be gently promoted.  And it may well be the case even then, that stimming will help the autistic individual focus better on what needs to be done.

But what if the stim is self-injurious—that is, what if the autistic person is desperately trying to smother pain they cannot control with a different kind of pain (head-banging, arm-biting, etc.) that they can control?  Extreme stims often (perhaps always) are a response to extreme distress that cannot be expressed in other ways.  A non-verbal teenager may not be able to tell his doctor that impacted wisdom teeth are causing him constant suffering, and that he is banging his head against the wall in an attempt to distract himself.  In that case, the only humane solution is to try gently to replace the harmful stim with a less destructive one—for example, head-banging and biting can often be replaced by deep pressure.[3]  Under no circumstances, however, should aversives—bitter tastes, sudden loud noises, disgusting smells,  or the application of new pain, such as electric shocks (and yes, these aversives are all still in use today, even though there is no scientific justification for them)—be used to eliminate self-injury.  There are few things crueler than punishing a child (or adult, for that matter) for stimming, if the stim is all that stands between them and despair.

 

 

 

 

[1] Cynthia Kim, “A Cognitive Defense of Stimming,” from her Musings of an Apsie blog: https://musingsofanaspie.com/2013/06/18/a-cognitive-defense-of-stimming-or-why-quiet-hands-makes-math-harder/

[2] “The Lure of Stims,” from Ido Kedar’s Ido in Autismland blog:  http://idoinautismland.com/?p=117

[3] Some useful tips may be found on http://fuckyeahstimming.tumblr.com/tagged/Replacement-Stim-Requests-and-Suggestions

Joy and Autism 1

 

The most widely disseminated public narratives about autism outline the “tragedy” of the condition—the despair and misery it supposedly creates, especially among the parents of children with autism.  These narratives were brought to special prominence in the controversy surrounding Autism Speaks’s notorious 2009 ad campaign “I Am Autism,” but they are also extremely common in the titles of books and articles, as well as in everyday conversation.  The fact is, however, that many parents of autistic children find their family life far from “tragic.”  And more importantly, many autistic people describe their own lives in very positive terms, while still acknowledging the difficulties they face.

I wanted to start this series of posts on autism and emotion with a discussion of joy, because—although the word seldom appears in media accounts of autism, and although the emotion itself has seldom been studied by researchers on autism—autistic people themselves often write about joy, about the delight and deep pleasure they find in their special interests, in the sensory world around them, and especially in the practice of “stimming.”

Here is the incomparable Julia Bascom, in a blog post that has circulated widely within the neurodiversity community, entitled “The Obsessive Joy of Autism”:

One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions. . . .

It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

It is beautiful. It is perfect.

I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.[1]

The very intensity of the autistic experience—the heightened sensory experience, the deep focus on special interests, the broad awareness of multiple stimuli—can cause considerable distress when beyond the individual’s control, but it can also give rise to astonishing experiences of beauty, delight, sensual pleasure, and joy when the individual can make use of that experience for her or his own ends.

Such moments of delight are achieved primarily through what scientists often describe dismissively as “stereotypic” or “repetitive” behaviors—hand flapping, rocking, spinning, bouncing, etc.  For many years, autism therapists tried to eliminate these behaviors, in an attempt to “normalize” autistic people.  The mantra “quiet hands” was regularly chanted in special education classrooms.  More recently, scientists and autism professionals have begun to recognize the importance of “self-stimulatory behaviors” (another scientific term for these actions) as a calming response to stressful situations.  It has therefore become less common for therapists to try to eliminate them completely, although it is still usually recommended that they encourage their clients to self-soothe in more “socially acceptable” ways (by playing with fidget toys, sitting in special chairs, etc.), rather than by the means of their own choosing.  However, I have never seen a scientist, teacher, or therapist recognize the importance of self-stimulation as a source of positive, indeed deeply positive, emotional experience.

The value of “stimming” is, however, a frequent theme of autistic writing (which scientists and other professionals who wish to understand autistic experience would do well to consult).[2]   Rocking, hand-flapping, and spinning are not only responses to distress, but also, and much more importantly, forms of play.  They provide intense satisfaction, mental stimulation, and sensory delight to autistic adults as well as children:

“When I flap I get a feeling of overwhelming joy and creative thoughts and images come from no where. My brain functioning becomes super fast and I can create perfect images or beautiful sentences in my mind.”[3] 

“I have difficulty regulating many of my body functions such as heat and cold or being overwhelmed by too much motion, light, sounds, etc. but I have access to a deep, deep, deep joy by manipulating movement, light, sounds, etc. on my own.[4]

“In the past year I have rediscovered the joy of stimming. I have unearthed a playfulness within me that I thought was lost.”[5]    

This “obsessive joy” is a wonderfully positive thing—that should be encouraged in autistic children and celebrated in autistic adults.  It can, however, also have an addictive quality, which I will discuss in my next post.

 

 

 

[1] Julia Bascom, “The Obsessive Joy of Autism,” Just Stimming blog (https://juststimming.wordpress.com/2011/04/05/the-obsessive-joy-of-autism/

[2] http://what-is-stimming.org/links/

[3] October 7, 2010 comment by “NothingsWrongWithMe” on “Understanding Hand-Flapping and What to Do (Or Not Do) About It,” on the Aspiring Dad blog (https://aspiringdad.wordpress.com/2008/01/30/understanding-hand-flapping-and-what-to-do-or-not-do-about-it/)

[4] “I is for Identity-first Language” April 10, 2015, on the Unstrange Mind blog (https://unstrangemind.wordpress.com/2015/04/10/i-is-for-identity-first-language/)

[5] “At the Intersection of Gender and Autism—Part 3” December 4, 2014, Musings of an Aspie blog (https://musingsofanaspie.com/tag/girlhood/)