Tag Archives: Anxiety

Passing and Exhaustion

"Passing", Anxiety, Autism, Disclosure, Employment, Human Rights, Masking, Normalization, , , , , , ,

“I identify as tired.” [1] –Emily Ballou

Autistic people who can appear “indistinguishable from their peers” pay a huge price for that achievement.  The cost is exhaustion—exhaustion to the point of incapacity, of burnout, of despair.  In the absence of a “typical” neurology, it 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.  In a blog post often cross-posted and referenced by other members of the autism community, Kassiane Sibley offered a particularly rich discussion of this issue.  The passage is very long, but I want to include it in full because the language is so evocative.  It opens with a word often used by the online autistic community: “allistic”—meaning someone who is not autistic.

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.[2]

This desperate effort does not, cannot stop with childhood.  “High-functioning” autistic people’s “emulator software” requires constant maintenance and upgrading throughout adult life, sucking away energy that might be devoted to more productive activities.[3] 

Adult autistics trying to pass have to focus intensely on all kinds of things most of rest of us never even consider.[4]  If they are lucky enough to have a paying job, for example, they must still keep 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.  For instance, riding a bus, 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.—all while looking as “normal” as possible.[5]  Once you get to work, you face 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), cause headaches and dizziness.  The constant noise as people move around the room, talking on the telephone or to each other, is not just “background noise” if you are one of the many autistic people who can’t distinguish between different layers of sound.  The overwhelming office wall of sound makes it difficult to understand what your boss or the person on the phone is trying to tell you, and embarrassing when you make a mistake.[6]  Intense smells in the bathroom and lunch room make you nauseous.  You are constantly aware of the uncomfortable tightness or scratchiness of work clothes.  You may even have to struggle to maintain the correct physical appearance.  Michael Scott Monje (the pen name of Athena Michaels-Dillon) describes what it’s like to “artificially hold” her face, for hours, to hide the fact that her eyes are not symmetrical and that her mouth naturally twists so that one side is open.[7] 

Employment also consists of a multitude of supposedly simple social interactions—involving eye contact, small talk, and constant snap judgments about appropriate responses.  All of this 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.[8]

Autistics trying to “pass” as neurotypical at work cannot use their best coping mechanisms—they can’t use stimming to release tension, they can’t hide in a dark, quiet room, or have a complete meltdown on the bus–because this will break through the neurotypical disguise and expose the autistic beneath.  (The meltdown on the bus may also lead to a police call and involuntary hospitalization.)  All you can do is suck it up.  Yet 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.[9]  

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.”[10]  Or:  “That me sitting here having a conversation in a way that reads as baseline normal to you is so high-energy that I’m going to start to break down from it in about half the time as you and have to go home and collapse.”

The harder these autistic adults work at passing, the higher the price they pay in exhaustion; the more exhausted they get, the weaker their ability to keep up the act.  Michael Scott Monje is a successful writer and a university lecturer.  But she has trouble keeping her face looking “normal,” and she 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. [11]

In other words, this intelligent, accomplished person who is sometimes able to be “indistinguishable from her peers,” will eventually collapse into her natural, non-speaking autistic state when she becomes just too tired to keep up the act anymore.

[1] Emily Paige Ballou, “I Identify as Tired,” on The Thinking Person’s Guide to Autism website, December 31, 2019:  http://www.thinkingautismguide.com/2019/12/i-identify-as-tired.html.  Ballou is using a phrase taken from a famous routine by autistic comedian Hannah Gadsby.

[2] Kassiane Sibley, “The Tyranny of Indistinguishability:  Performance,” on the Radical Neurodivergence Speaking blog, November 7, 2013, now moved to her Time to Listen blog:

http://timetolisten.blogspot.com/2013/11/the-tyranny-of-indistinguishability.html.  Compare Trogluddite, in the “Is Camouflaging Bad?” discussion on the Wrong Planet website, July 9, 2018:  https://wrongplanet.net/forums/viewtopic.php?t=366036&p=7954962.

[3] Emily Paige Ballou, “I Identify as Tired,” on The Thinking Person’s Guide to Autism website, December 31, 2019:  http://www.thinkingautismguide.com/2019/12/i-identify-as-tired.html.

[4] Kate, “Passing,” on The Thinking Person’s Guide to Autism website, September 14, 2012:  http://www.thinkingautismguide.com/2012/09/passing.html..

[5] See the “How common are public transport issues in people with ASD?” discussion on the Wrong Planet website, November, 2011:  https://wrongplanet.net/forums/viewtopic.php?f=3&t=179933&start=16.

[6] See, for example, youngeezer, in the “Cannot Stand the New Office” discussion on the Wrong Planet website, November 27, 2013:  https://wrongplanet.net/forums/viewtopic.php?t=245949;  and the “The Negative Impacts of Open Offices” discussion on the same website, October, 2017:  https://wrongplanet.net/forums/viewtopic.php?t=355333.

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

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

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

[9] “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/.  On the long-term costs of passing, see also Emily Paige Ballou, “The Unrecovered,” on the Thinking Person’s Guide to Autism blog, January 11, 2020:  http://www.thinkingautismguide.com/2020/01/the-unrecovered.html.

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

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

[11] Michael Scott Monje (Athena Michaels-Dillon), “Not That Autistic,” originally published on her blog, Shaping Clay, in 2013, but updated for publication in The Real Experts:  Readings for Parents of Autistic Children, ed. Michelle Sutton (Autonomous Press, 2015).

Police Shoot Autistic Child

Anxiety, Police Abuse, , ,

In Utah, an autistic 13-year-old with severe separation anxiety had a meltdown when his mom had to go back to work. She called the police to help get him to a hospital. She explained that he was autistic. She explained that he was unarmed.

And yet, they marched into the house, ordered him to “get on the ground” (great idea during a meltdown–*sarcasm*) and then shot him multiple times. He’s in the hospital with injuries to his intestines, bladder, should and ankle.

This is what comes of having “warrior” policing. It’s time the police start thinking of themselves as guardians of the people, not warriors. (see Seth Stoughton, “Law Enforcement’s ‘Warrior’ Problem” on the Harvard Law Review Forum). And it’s way past time for the police to learn what a meltdown really is and how to deal with it.

Meltdowns in School: Much Better Practices

Anxiety, Education, Human Rights, Myths about Autism, Restraint and Seclusion, , ,

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

Anxiety, Bullying, Psychiatric hospitalization, , ,

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.