Category Archives: Anxiety

Meltdowns in School: Much Better Practices

It is perfectly possible to reduce both the frequency and violence of student meltdowns, which will, in turn, reduce the need for restraint and seclusion in schools.[1] However, this requires a change in attitude on the part of educators, towards seeing autistic children not as willfully naughty or manipulative, but as overwhelmed and frightened.  Teachers, aides and other educators also need to be willing to observe these children’s behavior carefully and make “meltdown plans” in advance.  Given the already heavy burden carried by educators today, this may seem like a lot to ask, but dealing effectively with meltdowns will certainly reduce educators’ stress in the long run.

The best practical advice for teachers on this subject that I have found comes from three books. Deborah Lipsky and Will Richards’ Managing Meltdowns:  Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism focuses on interventions that can be used during a meltdown.  Deborah Lipsky’s From Anxiety to Meltdown:  How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively, and Geoff Colvin and Martin Sheehan’s Managing the Cycle of Meltdowns also offer guidance on ways to prevent (or at least limit the number of) meltdowns in the first place.[2]  Lipsky is herself autistic, has experience working as and for first responders (EMTs, firefighters, police officers), and writes from the perspective of her own personal experiences and those of other autistic people she has worked with.  Her collaborator for the first book, Will Richards, is a clinical psychologist, with extensive experience treating autistic clients.  Colvin and Sheehan are professional educators who have spent decades working with autistic children in schools. Despite their very different backgrounds, their conclusions are remarkably similar. 

All these writers clearly distinguish meltdowns from temper tantrums.[3] And all of them describe melting down as a process, which can be interrupted by an observant and skilled teacher or first responder.  Colvin and Sheehan propose a six-phase model of the “meltdown cycle,” in which a student who had been in a state of calm is subject to one or more triggering events, which then lead to increasing agitation until the point of no return is reached and he or she melts down.  Once the meltdown has played itself out, there is a period of re-grouping during which the student is beginning to recover but may easily melt down again if pushed too hard.  Finally, the student becomes calm enough to start over, although with some lingering anxiety, uncertainty, and irritation.[4] Lipsky does not present her observations in quite the same way, but a careful reading of her book shows that she holds a very similar view of the meltdown as a process.[5] 

“Avoiding it in the first place is the most effective way of preventing a meltdown.”[6]  Both Lipsky and Colvin and Sheehan offer extensive advice on how to maintain a student with autism in the calm phase, which essentially comes down to using best practices for teachers of autistic students:  providing sensory diets as needed, using visual supports, having clear rules (systematically taught to the whole class), planning ahead, and adjusting the curriculum as needed.  The three authors also encourage teachers and aides to identify and limit as much as possible triggers that may disrupt a student’s calm participation in class—whether these are sensory issues, unexpected breaks in routine, or something else.[7]

Teachers must also learn how to recognize the signs of increasing agitation, and how to intervene to de-escalate the situation with reassurance, comfort, and support.  According to Colvin and Sheehan, agitation is “normally an observable manifestation that something is wrong with the student.”[8]  While some students move very quickly through the agitation phase to a full-blown meltdown, offering little time for intervention, much more often there is a period of agitation during which an observant teacher will notice increased stimming, wriggling, pacing and noise-making, or decreased interaction with others, including partial or total loss of the ability to communicate, non-compliance with directions, covering eyes or staring into space, hiding hands or even seeking isolation.[9]  Training teachers to recognize these signs can have a huge impact on the frequency and violence of meltdowns in their classrooms.  When an autistic student is becoming agitated, the teacher or classroom aide can step in to provide reassurance and empathy, offer opportunities for breaks or for movement to quiet spaces, and encourage self-management (if the student already has some skills in this area).  Reducing an autistic student’s agitation is the key to preventing meltdowns.  It is essential that school personnel not become agitated themselves during this phase, as this will simply increase the student’s agitation and make a meltdown more likely.[10] 

If a teacher misses or ignores the signs, the student’s agitation will continue to increase until they reach a “point of no return,” after which a meltdown is going to occur no matter what.[11]   And once the meltdown begins, it will need to run its course, which typically ends when the child is too exhausted to continue.  School personnel and school police officers must recognize that at this point the student cannot control her or his behavior, and neither can they.  Shouting commands at a frightened child in the middle of an instinctual fight-or-flight reaction can only make the situation worse. Instead, the school should already have decided on an action plan and included it in the student’s IEP.  (Obviously, if a child is having meltdowns in school, he or she should have an IEP).  Staff should be trained in advance in ways of providing support for the melting-down student, by limiting additional sensory input, remaining calm, staying nearby (but not too close), and saying encouraging things in a low-pitched, slow voice.[12]  According to Lipsky, the calm and sympathetic use of the student’s name during a meltdown can be especially helpful.[13]  Educators should know how to calmly and quietly guide the student to a safe place and the meltdown plan should always ensure that someone observes the child while he or she is there.  If there is an immediate threat of injury to the student or those nearby, strategies should be in place for using (and later reporting) safe forms of restraint as a last (not first) resort.  Under some circumstances it may be better to clear the classroom of other students, until the meltdown is over. [14]

When the meltdown is past, it is cruel and counterproductive to criticize the student—who is physically and emotionally exhausted, and probably already deeply embarrassed about/ashamed of what happened.[15]  It should be unnecessary to say that police involvement after the meltdown is ended can only be counterproductive.  Neither is it useful to interrogate the student about why the meltdown happened.  (Discussion of the meltdown can occur sometime later—perhaps even the following day.)  Autistic children are still emotionally labile during the “regrouping” phase and may escalate into a second meltdown if pushed too hard.  Rather, the teacher or an aide should continue to offer quiet support and can encourage the student to use a stim toy or pursue their special interest as a way of bringing them back from the fight for survival into the ordinary world.[16]

Eventually, the student will return to a non-agitated, relatively normal state during the “starting over” phase, and can return to the classroom (if they left it during the meltdown).  Nevertheless, they may still be feeling some anxiety, irritability, or uncertainty, and should not be pushed too quickly to engage in normal learning activities.  Concrete tasks, which the student has already shown he or she can perform, are the best activities for this period; engaging in such tasks can help the student gain confidence and eventually return to their original state of calm.[17]

Good teachers here and there throughout the United States have already learned how to manage meltdowns successfully, using these or similar techniques.  It is time for such techniques to become standard practice in all of our schools.  But it all starts with changing the attitudes of the adults involved towards the autistic students they serve.


[1] Grafton Integrated Health Care, a for-profit behavioral health organization, has claimed that its proprietary “Ukeru model” has reduced incidents of restraint by 99% and incidents of seclusion by 100% over the course of 14 years (2003-2016), in community as well as institutional settings.  They claim that staff injuries from restraint have declined by 100% in community settings, and 97% in institutions:  Jason Craig and Kimberly Sanders, “Evaluation of a Program Model for Minimizing Restraint and Seclusion,” Advances in Neurodevelopmental Disorders 2 (2018), 344-352.  The authors of this paper are affiliated with Grafton, and I have not been able to discover any corroborating analyses conducted by unaffiliated scientists. 

[2] Deborah Lipsky and Will Richards, Managing Meltdowns:  Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism (London:  Jessica Kingsley, 2009); Deborah Lipsky, From Anxiety to Meltdown: How Individuals on the Autism Spectrum Deal with Anxiety, Experience Meltdowns, Manifest Tantrums, and How You Can Intervene Effectively (London:  Jessica Kingsley, 2011) and Geoff Colvin and Martin Sheehan, Managing the Cycle of Meltdowns for Students with Autism Spectrum Disorder (Thousand Oaks, CA:  Corwin, 2012).  Another excellent book on this subject is Judy Endow’s Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders (Shawnee Mission, Kansas: Autism Publishing Company, 2009).

[3] Lipsky and Richards, Managing Meltdowns, section entitled “Are Meltdowns and Temper Tantrums the Same Thing?” (I am using the Kindle edition of the book, which has no page numbers); Lipsky, From Anxiety to Meltdown, p. 108, 135-42, and especially 149-52 (on determining whether behavior is a tantrum or a meltdown).  Incidentally, Lipsky also offers some very useful suggestions for dealing with tantrums, even though her main focus is on meltdowns:  see pp. 142-49Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 22-25.

[4] Colvin and Sheehan, Managing the Cycle, pp. 29-30.

[5] Lipsky, From Anxiety to Meltdown, see especially, p. 127.  Judy Endow has a similar model: Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders (Shawnee Mission, Kansas: Autism Publishing Company, 2009), pp. 11-46.

[6]    Lipsky, From Anxiety to Meltdown, p. 229.

[7] Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 63-108; discussion of potential triggers is a particular strength of Lipsky’s book, From Anxiety to Meltdown, pp. 161-214.

[8] Colvin and Sheehan, Managing the Cycle of Meltdowns, p. 39.

[9] Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 40-43; Lipsky and Richards, Managing Meltdowns, section on “What Are Some of the Warning Signs of a Potential Meltdown?”

[10] Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 109-22.

[11] The phrase “point of no return” is used by Judy Endow, Outsmarting Explosive Behavior, pp. 35-40.  She uses it to emphasize that once a child has reached this point they are no longer in control of their behavior; making a meltdown inevitable.

[12] Lipsky and Richards, Managing Meltdowns; Lipsky, From Anxiety to Meltdowns, pp. 216-22; Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 135-36

[13] Lipsky, From Anxiety to Meltdown, p. 221.

[14] Colvin and Sheehan, Managing the Cycle of Meltdowns, p. 123-41; compare Lipsky, From Anxiety to Meltdown, p. 221.

[15] Lipsky, From Anxiety to Meltdown, pp. 110, 126, 141.

[16] Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 142-53.

[17] Colvin and Sheehan, Managing the Cycle of Meltdowns, pp. 49-51, 154-68.

An Autistic Adult and the Horrors of the American Psychiatric System

My darling, sweet, smart, kind daughter has been imprisoned (her word) in the psychiatric system for three months now.   She has lost weight (and she didn’t weigh much to begin with), energy, her sense of identity, and virtually all hope.  We see little chance of her getting out, because the system—with its constant accumulation of small (and sometimes large) cruelties—appears specifically designed to make an autistic adult crazy.

Leaving aside the constant loud noises, the lack of privacy, the fluorescent lights burning into her brain, and the dreadful food, there are an endless number of other problems that increase her anxiety and depression.

For example, she hasnt seen the light of day for three solid months, and that alone was driving her insane, since being outside has always helped relieve her stress. Well, yesterday her cold and uncaring psychiatrist finally announced that she would be allowed outside on their little patio.  Sadly, however, she is still on one-to-one supervision, and must be accompanied by a tech everywhere.  And the techs simply dont feel like going out, so—despite being promised the “privilege” of a tiny bit of fresh air—she remains stuck inside.

She is anxious all the time, and one of the few ways she has of relieving that anxiety is pacing the halls  but the staff dont feel like walking with her.  They would rather sit and talk to their boyfriends or girlfriends, or play games on their phones  so they tell her to sit down and dont move, until she becomes so overwhelmed that she scratches her skin (again).

Another patient has been extorting possessions from her for weeks—threatening to hurt my daughter if she doesnt hand over her toiletries, art supplies, and the extra food we have brought in to keep her weight from dropping so fast.  The staff are perfectly well aware that she is being threatened (after all, someone has to be within ten feet of her at all times), but they just look the other way.  The social worker on the unit tells her that she has to be more assertive, but its hard to be assertive if you have no hope.

Today was the biggest blow, though.  My daughter has had a private room for all these months for reasons that are not clear to us.  Today, with no warning at all (so helpful for someone on the spectrum—*sarcasm*), she was moved to a room with another woman who has already made life miserable for two other patients.  (For one thing, she likes to sleep in the daytime and stay up all night with the lights on.)

But the move was not the worst of it.  The staff decided that it had to happen IMMEDIATELY, so they wouldn’t allow my daughter to carefully take down all the decorations she has taped to her walls over the months to make herself feel better.  Instead, within a matter of minutes, the staff had ripped down all the photos of her dog, the pictures of flowers she has colored in, the cards from her friends, and the collage we made her of “people who love me.”  Within five minutes the collage was shredded, the pictures and cards were torn, and one of her last layers of security was gone.

I’m done being circumspect about this.  I’m going to start naming the names of the institutions and individuals who are torturing my child and me.  The place where all this is happening is Andrew McFarland State “Mental Health” Center in Springfield, Illinois.  (The quotation marks are because whatever else is going on in this place, it’s certainly not mental health).  Supposedly this is the best of the state hospitals in Illinois, but not if you are autistic. And the psychiatrist in charge, who is quite skilled at prescribing medications (credit where it’s due), but who is otherwise rigid, cold, and unfeeling, is one Dr. Eberhardt, whom I very much hope burns in hell for all eternity.

 

 

 

Disruptive Behaviors: The “Movement Behaviors”

 

“[School] was a nightmare full of loud sounds, bright colors, and noisy children.  The adoration I received for being ‘so smart’ faded with each grade.  I could not understand what was happening.  Instead of praise, I was constantly getting reprimanded.  Nothing made sense.  Even [the school principal] no longer meant what he said.  He said I could come and see him whenever I wanted, but he lied.  When I rose from my seat, walked out of my classroom, and went down the stairs to the main office to see him, I was in trouble.  ‘Young lady, you cannot just walk out of [the teacher’s] class and come down here.’  Tears welled up in my eyes as I tried to make sense of it.”[1]

 

Many autistic students move their bodies in ways other students do not (or at least not as regularly).  They may flap their hands, bounce up and down in their seats, twirl in the aisles, hide under their desks, get up and wander around the classroom, or try to leave the room or even the school.  (They may also behave in more disturbing ways.  Meltdowns, self-injury, and aggression towards others will be the subject of another post–for now, I want to focus on the actions just described:  flapping, bouncing, rocking, and various “out-of-seat behaviors” like hiding, wandering, and running away.)

 

Schools often view these “movement behaviors,” even more than vocalizations, as barriers to the inclusion of autistic students in mainstream classrooms.  Movement behaviors make many teachers uncomfortable because they break the visual pattern of an orderly classroom and appear to undermine discipline.  Some administrators and teachers also attribute disturbing motivations to students who behave in these ways.  They may view certain types of movement as evidence of defiance or disrespect, as acts of wilful disruption.  They fail to realize that autistic students who flap and rock and hide are not generally trying to be disruptive (with a few exceptions, to be described below).

 

In the first place, because autistic students often do not pick up on social cues from their fellow students, they may simply not understand why they can’t just move their bodies the way they want in school.  If they bounce or twirl at home, they assume that they can also bounce or twirl at school.  They may view demands that they stop as nonsensical, or–especially when their movements are related to sensory issues—they may simply be unable to stop.  As researchers and teachers are slowly coming to realize, movement is often a necessity for autistic children.[2]  Rocking may alleviate dizziness, making a student feel less likely to fall out of his or her seat.  Bouncing may help a child locate his or her body in space, diminishing the terrifying feeling of being “disembodied.”  If a fire alarm suddenly goes off, the only choice for some children will be to run away from an intolerably painful noise.  Many students with autism use movement to distract or protect themselves from sensory overload, or–on the other hand–to gain the sensory stimulation they need to remain focused on their schoolwork.

 

If some teachers are beginning to understand the connection between movement behaviors and sensory needs, far fewer understand how other factors are involved.  They may not realize that some autistic students move around because of their very eagerness to learn.  A child with auditory or visual differences may rove through the classroom trying to find a spot where he or she can access the information the teacher is presenting.  A child keenly interested in nature or in the trucks rolling down the street outside the school may run to the windows or even outside the school to pursue those interests.  Students bored with their own “toned-down” curriculum may wander around the classroom to catch a glimpse of what other students are doing.[3]

 

Emotional as well as intellectual issues may play a role.  Jeanne Davide-Rivera, the author of the passage cited above, left her classroom to visit the nice principal she had met her first day of school—the one who had actually told her she could visit him any time she wanted!  She found it intensely confusing when she was told that her behavior was wrong.  In her case, movement was a response to the desire for human connection—a desire autistic students are often assumed not to have.  Movement is even more often a response to anxiety associated with heavy academic or social unease.  In some children, anxiety leads to increased rocking, bouncing, or hiding.  Emotional distress caused by real or perceived academic “failures,” or by cruelty on the part of teachers and classmates often results in “elopement” or bolting out of a classroom or school.[4]

 

It remains the case, however, that most movement behaviors are either well-intentioned (that is, the student is actually trying very hard to be “good”) or unavoidable (he or she simply needs to move).  Only rarely is autistic “acting up” intended disrupt the class—and even then, this is not always for the reasons teachers or administrators imagine.  To give one unexpected example:  children overwhelmed by the visual and auditory stimuli in their classrooms may discover that they can hear and understand their lessons better from a desk in the hallway, which they then learn they can acquire for themselves through some planned infraction of the rules about movement.[5]  For these children, engaging in “undesirable” movement behaviors becomes the key to learning.

 

More commonly, however, deliberate misbehavior is a planned reaction to intolerable stress.  It is an undeniable fact that autistic students seldom enjoy school.  Much more often they experience school as “a nightmare” or as “hell.”[6]  Few administrators or teachers understand how painful school is for these students.  Day after day they must endure constant bombardment by sensory stimuli, the terror of (often unsuccessful) social interactions, and—most serious of all—the attentions of sadistic bullies.  (More on bullying in another post.)  After they have suffered for months or even years, some of these students consciously decide to behave in ways they know are wrong, in the hopes of being suspended and allowed to stay home.  The Wrong Planet website (an online forum for those with autism) has had several discussion threads about school suspension, and a common theme is seeking out suspension as a way to avoid bullies.[7]  What is most striking about these posts, however, is how often the authors used this approach only as a last, desperate resort.

 

So when teachers or school administrators are faced with autistic students who bounce, rock, twirl, and elope, they would do well to consider all the other possible reasons for these movement behaviors, before assuming that their students are simply being disrespectful.

 

 

 

 

 

 

[1] Jeanne Davide-Rivera,  Twirling Naked in the Streets and No One Noticed:  Growing Up with Undiagnosed Autism ([Location Unclear]:  David and Goliath Publishing, 2013), p. 34.

[2] Sadly, there remain so-called “experts” who assume that these children are deliberately misbehaving:  e.g., Deborah Napolitano and David McAdam, “Problem Behavior,” in Tristram Smith, ed., Making Inclusion Work for Students with Autism Spectrum Disorders:  An Evidence-Based Guide (New York:  Guilford Press, 2012), p. 304:  “Throughout the day, students continually have a choice [emphasis added] of whether to display the problem behavior . . .”

[3] Consider the case of Laura, described by Paula Kluth, You’re Going to Love This Kid:  Teaching Students with Autism in the Inclusive Classroom, 2nd ed. (Baltimore:  Paul H. Brookes Publishing, 2010), p. 202.

[4] See the post by WAautistic guy on a thread about “What Are Your Worst Experiences at School” on Wrong Planet:  http://wrongplanet.net/forums/viewtopic.php?f=14&t=166310&start=30.

[5] Davide-Rivera, Twirling Naked in the Streets, p. 36.

[6] See the thread entitled “Public Education is HELL for Aspie Children:  http://wrongplanet.net/forums/viewtopic.php?p=1100890;  skimming through the “School” forum as a whole makes clear why school is so often found intolerable by those with autism.

[7] E.g., the following:“Anyone Ever Threatened with Suspension?” (http://wrongplanet.net/forums/viewtopic.php?f=14&t=148672) and “Is Suspension Really a Punishment?”(http://wrongplanet.net/forums/viewtopic.php?t=194004)

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 principal emotion experienced by autistic people is fear”

 

Autistics live with fear, in a way that most neurotypical people (including myself) find difficult to imagine.  Anxiety impairs quality of life in up to 84% of all autistic individuals.  Roughly 40% suffer from some form of clinically significant anxiety disorder–as compared to 18% of the overall population of the United States.[1]  As Sparrow Rose Jones puts it:  “I have anxiety so bad and have had it for so long that I didn’t even realize how anxious my baseline state is until the first time I smoked marijuana and experienced what it’s like to feel peaceful. My anxiety makes every day a struggle. Even my good days are riddled with anxiety.”[2]  Famous autistics like John Elder Robison and Temple Grandin–people who have written multiple books and appeared often in public– are by no means immune to this problem.  Although he hides it well, Robison confesses that “the fear and anxiety is always with me.”[3]  Grandin goes further.  She believes that “the principal emotion experienced by autistic people is fear.”[4]

 

Many of the behaviors that perplex neurotypicals arise out of fear.  Many–perhaps most–meltdowns, self-harm, aggression against others, eloping, and obsessive stimming can be attributed to a kind of existential terror, a feeling that the one’s very self is dissolving into a world of chaos and unpredictability.  Tito Mukhopadhyay’s memories of his early childhood include this kind of terror.  As a very young child, he became entranced by his shadow, which he understood as part of himself.  But at night, when his shadow disappeared, he would panic:  “I remember my voice screaming when I could not see my shadow anywhere around me.  I wondered whether it had left me here all alone.  I was afraid that I would lose my existence because my shadow had left.”[5]

 

To many autistics, the world is a wildly unpredictable, and therefore deeply frightening place.  Difficulties in reading and responding appropriately to cues from other people make it next to impossible to predict what will happen in social situations.[6]  For those readers who are neurotypical:  imagine how scary it would be if all the people we met wore masks that hid their facial expressions and voice filters that deadened variations in tone.  All the familiar clues that tell us whether the person we are dealing with is friendly or hostile, all the clues that tell us whether the words being spoken to us are meant literally, ironically, or sarcastically would be gone.  We could never be quite sure whether we were being accepted or rejected, praised or ridiculed, told the truth or being lied to.  This is the condition in which autistics must live every day.

 

But social anxiety, while extremely common, is only the tip of the iceberg.  Lack of predictability permeates every aspect of the autistic condition, including even experiences of the physical world and one’s own body.  Sensory issues are as much a source of fear as social interactions.[7]  A person with acute tactile sensitivities constantly worries about coming into contact with something painful;  another with sensitivity to sound may be so terrified by a sudden loud noise that she screams out loud.  A thirsty child may find himself suddenly unable to drink a favorite soda, without understanding that this time the soda was simply too cold for him to tolerate.  A meltdown follows, not only because the child’s desire for a drink has not been not satisfied, but, more importantly, because what had previously been a predictable source of comfort has now inexplicably disappeared.

 

Proprioception is awareness of the body’s location in space, in relationship to other objects.  Many autistics have relatively weak proprioception–they must live with constant worries about bumping into things or falling because they have misjudged distances.  Worse, they may sometimes not be able to feel their bodies at all—they experience an eerie sense of floating, of being ungrounded, that quickly becomes intolerable.  “It’s something I struggle with,” M. Kelter reports.  “My limbs, especially my arms, feel sort of disconnected, strange. It’s like they’re floating next to me, not really attached.”[8] These individuals may frantically seek deep pressure or jump up and down or purposely bang into walls, simply as a means of locating their own bodies.

 

Interoception, on the other hand, is awareness of the body’s internal processes and states–the ability to feel one’s own breathing, tell whether one is cold enough to need a coat, identify a physical sensation as hunger or pain.  “Many autistic people have dampened or muted interoception. We just don’t seem to notice what’s going on in our bodies until it reaches a level that other people would find intolerable. And often when we do notice it, it goes from ‘oh that’s happening’ to intolerable really darn fast,” notes Cynthia Kim.[9]  Poor awareness of bodily states can have dangerous consequences in the real world:  the person with hypointeroception (lack of ability to detect physical states) may forget to eat or sleep or obtain needed medical care.  It is not surprising, then, that mysterious bodily sensations—or the lack of any bodily sensation at all–may cause anxiety. But interoception is also closely tied to self-awareness and emotion.  The inability to sense how one’s own body feels right now or to predict how it will react in the future creates a fearful sense of one’s very self as insubstantial and fragile, easily disrupted or destroyed.  More on this in the next post.

 

 

[1]  See also Francisca van Steesel, Susan Bögels and Sean Perrin, “Anxiety Disorders in Children and Adolescents with Autism Spectrum Disorders:  A Meta-Analysis,” Clinical Child and Family Psychology Review 14: 3 (2011), 302-17.

[2] Rose Sparrow Jones, “Anxiety and Mental Health Accessibility,” from the Unstrange Mind blog, :  https://unstrangemind.wordpress.com/2016/05/05/anxiety-and-mental-health-accessibility/.

[3] by John Elder Robison, “Autism and Fear,” Psychology Today 2/8/2011:  https://www.psychologytoday.com/blog/my-life-aspergers/201102/autism-and-fear.

[4] Cited by Robison (see note 3) and by Liz Becker, “Fear and Autism,” on the Autism Support Network blog:  http://www.autismsupportnetwork.com/news/fear-and-autism-2478922.

[5] Tito Mukhopadhyay, How Can I Talk If My Lips Don’t Move?  Inside My Autistic Mind (New York, 2008),

[6] An eloquent expression of this anxiety can be found in the poem “Terrified of People,” by autistic teenager Iain Kohn:

https://themighty.com/2016/01/why-i-am-terrified-of-people-as-an-autistic-teen/

 

[7] Judy Endow, “Fear, Anxiety, and Autistic ‘Behavior’,“ on the Aspects of Autism Translated blog:  http://www.judyendow.com/advocacy/fear-anxiety-and-autistic-behavior/.  Endow notes:  “Because we do not have a way to predict if, when or how our bodies will serve us (or not!) it is quite common for autistic people to have some level of ongoing fear and/or anxiety.”

[8] M. Kelter, “The indefinite, luminous curve,” on the Invisible Strings blog:  http://theinvisiblestrings.com/the-indefinite-luminous-curve/#more-1225.

[9]   Cynthia Kim, “Interoception:  How Do I Feel?” on the Musings of an Aspie blog:  https://musingsofanaspie.com/2013/07/03/interoception-how-do-i-feel/

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