SHE’S OUT!!!!

After six months in three different psychiatric hospitals, my darling daughter is finally out and living at home again. She still suffers from PTSD (made much worse by the hospitals themselves), but at least she is able to be with her family and her dog, see her friends, and breathe the open air.

We are SOOOO happy!

THE DREADED MELTDOWN

 

“Autistic meltdowns may be frightening to observers, but at their most intense, they are nothing less than pure psychological torture for the person experiencing them. I feel as if I am caught in a war zone, terrified for my very life. My senses are on fire and I have very little control over myself.”[1]

Schools are overwhelming places for autistic children–full of blinding lights, unexpected loud noises, bullies, and constant social, physical, and intellectual demands.  It is hardly surprising, then, that these children sometimes have meltdowns in school settings.  These may be relatively quiet affairs, in which the child rocks back and forth, covering his or her face or ears to shut out overwhelming sensory stimuli—some autistic people refer to this type of experience as a “shutdown,” as opposed to a “meltdown,” which is generally much more dramatic, involving screaming or uncontrollable crying, kicking, biting, punching, throwing various items, or self-harming.  Other autistic people use the term “meltdown” for both types of reaction, because the internal experience is roughly the same in each.

Despite the fact that they occur frequently in school, many educators do not understand meltdowns or know how to deal with them.  The most common misperception—shared by far too many ill-informed scientists[2] as well as by many school personnel—is that an autistic meltdown is just an extreme form of temper tantrum. Meltdowns and tantrums may look somewhat similar—both involve screaming, crying, kicking, biting, etc.  However, the two phenomena arise from different causes, run very different courses, and can be distinguished through careful observation.  The conflation of meltdowns with tantrums far too often leads educators to characterize autistic children pejoratively, as “cunning” or “manipulative,” with all the negative consequences these labels entail.

Now temper tantrums really are manipulative behaviors, designed to gain attention, avoid unwanted demands, or obtain material rewards.  Neurotypical children acting out in these ways will—even as they scream or kick–keep an eye on the people around them, to see whether the desired outcome is forthcoming, and will often adjust their behavior if one strategy is not effective.  They are careful not to hurt themselves even as they flail around. Once their goal is achieved, the tantrum will stop.  Autistic children seldom have genuine temper tantrums, for the simple reason that they lack the social skills needed to analyze and manipulate those around them.  Most of the time, their disruptive behaviors fall into the meltdown category.[3]

In contrast to a tantrum, a meltdown is an instinctive “fight or flight” reaction to an intolerably stressful situation. Unlike tantrums, meltdowns are unplanned and have no goal. As Geoff Colvin and Martin Sheehan have noted in their excellent book on preventing meltdowns in schools, “One of the defining characteristics of a meltdown is that the student is basically oblivious of anyone and anything in the environment.”[4]  The child suffering a meltdown never keeps an eye on the people around them to see how they react, cannot adjust his or her behavior to achieve a particular purpose, and cannot bring the meltdown to an end until it has run its course.  Older children and adults may eventually learn to recognize the signs of impending meltdowns, and—if they are lucky—they may sometimes be able to head them off.[5]  Most schoolchildren, however, do not have this level of self-perception, and are generally unable to either recognize the signs of an approaching meltdown or take action to prevent it from happening.

It is extremely important to remember that autistic children (and their adult counterparts) do not enjoy having meltdowns—on the contrary, they find the experience frightening and painful.  While autistic children do write about having meltdowns on various online fora, they seldom describe the experience itself, so I have relied here on what autistic adults have to say on the subject.

I couldn’t stop the headache that built until my eyes wouldn’t focus properly; The thudding pressure between my eyes and at my temples.  My thoughts started swirling like a Jackson Pollock, and I kept finding myself stuck in loops of fragments of sentences. I started unconsciously tapping my forehead with the knuckles of my right hand, whilst my left firmly held the back of my neck.  I felt overwhelmed, and ashamed by that feeling. I felt lost and embarrassed. Thoughts were reduced to feelings (despite feelings being thoughts) I found it hard to do anything beyond feel pain. . . .[6] 

“There is a tipping point. A mental red zone. Once I cross into that zone, there’s no going back. . . .  Panic. Helplessness. Fear. . . .  There is emotion at the starting line, but a meltdown is a physical phenomenon: The racing heart. The shivering. The uncontrollable sobs. The urge to curl up and disappear. The headbanging. The need to hide. The craving for deep pressure. The feeling of paralysis in my tongue and throat. The cold sweat. . . . “[7]

 Autistic children experience meltdowns as a complete loss of control over their minds and bodies.  Here are some children describing their experiences:

“We had a fire drill but nobody told me like i was told people where [were] going to do. I freaked out and started crying and pushing my hands against my ears. When we got outside i just sat down and rocked. I couldnt move. I think it was more of a shutdown. . . . The super loud noise is what made me have a meltdown.”[8]

 “When I was a kid my meltdowns were very violent, I would scream and hit things, crying and all sorts, scratch myself, hit my head against the wall, if anyone touched me it got worse. I would blank out and not remember anything, then finally fall asleep after crying so much I got a headache.”[9]

 “i was EXTREMELY passive [in school]. Every few years I would sort of snap and beat the piss out of someone that had been bullying me for too long. The first incident I don’t remember. All I remember is her . . . shoving my face in the dirt…and then I am in the car and my mom is saying “are you ok? why would you do that? are you OK???” over and over and over. The story is that I broke her arm. I did not believe them until I got back from my suspension and saw her in a cast. . . . I still feel really bad knowing I broke her arm. Who knows if it healed up properly, you know? It may still cause her grief.”[10]

When the meltdown is over, autistic children (and adults) often have no memory of what happened.  If they do remember, they usually feel deeply embarrassed about being so “out of control.”

“The reason why I feel so disappointed with myself after meltdowns is firstly because of the misery I cause others, and secondly because I can hardly believe how little control I have over my emotions…”[11]

“I wish AS [autism spectrum] never involved having meltdowns. Why do they involve meltdowns? I feel so embarrassed of them all the time, but when I get in a mood and a panic about something, I can’t always help myself. They just happen on the spur of the moment.”[12]

“It gets to the point that when I know [a meltdown] is coming, I start to feel ashamed preemptively. I’ve been told off for constantly apologizing, partly because I can’t figure out what to say (communication is conking out) and partly because I’m so ashamed.”[13]

 

Despite what some scientists and teachers may think, it is obvious that no one would choose to have such frightening, often physically painful, and embarrassing experiences.  The bottom line is that autistic children who melt down in school need help—not criticism or punishment.

 

 

 

 

 

 

[1] Tambourine-Man, in the “What Not to Do During a Meltdown—From an Autistic Adult” discussion on the Wrong Planet website:

https://wrongplanet.net/forums/viewtopic.php?t=180194.

[2] E.g., The Encyclopedia of Autism, edited by Fred Volkmar of Yale University, incudes an article by Aaron Stabel on “Temper Tantrums” full of the usual negative stereotypes of children who have “tantrums.”  The Encyclopedia contains no article on meltdowns.  See also Rachel Goldin, et al., A Comparison of Tantrum Behavior Profiles in Children with ASD, ADHD, and Comorbid ASD and ADHD,” Research in Developmental Disabilities 34 (2013), 2669-2675; Abigail Issarraras and Johnny Matson, “Treatment Approaches to Aggression and Tantrums in Children with Developmental Disabilities,” in Johnny Matson, ed., Handbook of Child Psychopathology and Developmental Disabilities Treatment (Cham, Switzerland:  Springer, 2017), pp. 257-68.

[3] Dr. Clarissa Kripke, clinical professor of family and community medicine at the University of California San Francisco, “Understanding Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices,” on The Thinking Person’s Guide to Autism website:

http://www.thinkingautismguide.com/2016/08/when-autistic-children-are-aggressive.html.

[4] Geoff Colvin and Martin Sheehan, Managing the Cycle of Meltdowns for Students with Autism Spectrum Disorder (Thousand Oaks, CA:  Corwin, 2012), p. 145.

[5] Sofisol612, in the “What Does a Meltdown Look Like in an Adult Woman” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?t=337317.

[6] Rhi, “Meltdown,” in the “Autism and Expectations” blog: https://autistrhi.com/2018/11/24/meltdown/.

[7] Cynthia Kim, “Anatomy of a Meltdown,” on the “Musings of an Aspie” blog, December 13, 2012:

https://musingsofanaspie.com/?s=meltdown.

[8] Pokelover14, in the “Did You Ever Have a Meltdown at School” discussion on the Wrong Planet website:

https://wrongplanet.net/forums/viewtopic.php?f=3&t=208692&start=30.

[9] Antisocial Butterfly, in the “Meltdowns? Fall Asleep/Tired Or Biting Meltdowns?” discussion on the Wrong Planet website: https://wrongplanet.net/forums/viewtopic.php?f=3&t=63131&start=15.

[10] blackcat, in the “Female Aspies Were You Violent As A Child?” discussion on the Wrong Planet website:

http://wrongplanet.net/forums/viewtopic.php?t=185159.

[11] crouton, in the “Anyone Else Feel Embarrassed/ashamed After A Meltdown?” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?t=140790.

[12] Joe90, in the “Anyone Else Feel Embarrassed/ashamed After A Meltdown?” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?t=140790.

[13] Callista, , in the “Anyone Else Feel Embarrassed/ashamed After A Meltdown?” discussion on the Wrong Planet website:  https://wrongplanet.net/forums/viewtopic.php?t=140790.

 

Greta Thunberg’s Speech to Parliament

 

I have been admiring this young woman’s work to stop climate change for several months now.  Only yesterday did I learn that she was autistic.  Here are her words of wisdom to the British Parliament:

“My name is Greta Thunberg. I am 16 years old. I come from Sweden. And I speak on behalf of future generations.

I know many of you don’t want to listen to us – you say we are just children. But we’re only repeating the message of the united climate science.

Many of you appear concerned that we are wasting valuable lesson time, but I assure you we will go back to school the moment you start listening to science and give us a future. Is that really too much to ask?

In the year 2030 I will be 26 years old. My little sister Beata will be 23. Just like many of your own children or grandchildren. That is a great age, we have been told. When you have all of your life ahead of you. But I am not so sure it will be that great for us.

I was fortunate to be born in a time and place where everyone told us to dream big; I could become whatever I wanted to. I could live wherever I wanted to. People like me had everything we needed and more. Things our grandparents could not even dream of. We had everything we could ever wish for and yet now we may have nothing.

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.

 

 

 

The Unending Nightmare

Trigger warning: discussion of suicide, psychiatric abuse

It’s been five weeks now, and beloved daughter is still locked in a nightmarish “mental health” ward, with a sadistic psychiatrist who refuses to believe that she’s autistic (she was first diagnosed at age 3 and multiple times thereafter) and who punishes her for acting autistic (“you’re just looking for attention”).

Seven months ago she was raped while asleep in her own bed in her own apartment. So the asshole psychiatrist, who knows about this, assigns male techs to watch her shower and use the toilet, and sometimes to “observe” her overnight. On those occasions she forces herself to stay awake all night because she’s afraid of what will happen if she sleeps.

Her only comfort in the ward is a little stuffed dog toy—so they punish her by taking it away from her if she’s not “compliant” enough.

The idiot psychiatrist seems unable to grasp the fact that she is suffering the aftereffects of multiple traumas, and has decided that she must have borderline personality disorder—despite the fact that she doesn’t come close to meeting the DSM-V diagnostic criteria.  So they have started hounding her to admit that she’s “manipulative.”

She wasn’t in very bad shape when she went into this place—she had made a kind of half-hearted suicide attempt.  But now she is in a really terrible state of mind, and I’m afraid she really will kill herself from the trauma of this hospitalization.

We WILL sue the hospital.  Any suggestions about individuals or organizations that would like to join in?

 

 

 

Hard Times in the Midwest

Trigger warning:  discussion of suicide.

 

Once again, I haven’t posted for a while.  This is because Deeply Beloved Daughter is doing badly.

She’s in her senior year of university now, and very successful academically, but the last six months have been a total disaster emotionally.

She was sexually assaulted (to her credit, she pressed charges and the guy is now in jail, but it was super hard).  Her sister developed a life-threatening illness, which really scared her.  Her grandmother, whom she felt very close to, died.  And one of her best friends from high school committed suicide.  One trauma after another.  And all through this, she maintained her mask of being “normal”/neurotypical (her choice, not her parents) and worked hard at school  But the additional pressure of final exams did her in.  She began self-harming and talked about suicide.

So here she is, in her third week on a psychiatric unit where no one understands anything about autism (we had to explain meltdowns to them), where she can’t escape the fluorescent lights or the noise, where the staff are constantly criticizing her, and where she’s being heavily drugged with useless and potentially very harmful stuff.  Two days after Christmas she goes before a judge who will probably commit her to a state hospital.  (Yes we have lawyers and expert opinions, etc., but we are not very hopeful).

Those of you who pray, please pray for us.  Everyone else:  fight like hell for better psychiatric care for autistic people.

 

 

 

 

The Last Five Months

. . . have been unbelievably bad around here.  One member of the family dead (a natural death at an advanced age, but still hard), another member diagnosed with not one, but two life-threatening diseases, a third raped and suffering from PTSD.  Beloved husband and I have been coping, but just barely.  Even the noble dog and the bloody cat have been affected by the stress in the house.  In case you were wondering, that’s why you haven’t heard from me for so long.

The repercussions continue, but I hope (always hope) that I will be able to start posting things again soon.

Six Days in the ICU

I mostly write about my older daughter–the one with autism–in this blog.  But younger daughter has her problems too, and last week they became acute.  She had been feeling off for about two months, with a persistent cough and fatigue.  But then about ten days ago she called up and asked me to take her to the E.R.  She was extremely pale and her tongue had a green (!) tinge.  I got her there, they took one look and started the process of admitting her to the hospital.  She was extremely anemic, and had a startling low number of platelets in her blood.  Two days later, she was transferred to the Intensive Care Unit at Barnes Jewish Hospital in St. Louis (where, I have to say, they have been absolutely fantastic with her care).

The immediate problem was an extremely rare (2 cases in every million people–lucky us!) blood disorder called Atypical Hemolytic Uremic Syndrome, in which the immune system attacks the blood.  She had to have repeated transfusions of blood and platelets, as well as an extremely scary drug that is the best treatment for AHUS, but increases the risk of contracting Meningitis by 1,000%.

After six days of intensive testing, during which she got sicker and sicker, they determined that the underlying cause was Lupus.  Once they started treatment for that, there was an immediate improvement.  She didn’t have to have lots of pain medicine and she could eat without vomiting.  Last night she was visited in the ICU by a therapy dog.  She was able to get out of bed and hug him, which made her (and us) burst into tears.

In short, the chaos continues here in the Midwest.  But what a relief to have her feeling better.

 

The Bloody Cat in Exile

Alas, the poor cat.  Older daughter was recently hospitalized, so we took her dog into our house to care for until she was well enough to deal with him again.  The dog is a huge beast, of uncertain genetic heritage, and a total sweetheart.  Unfortunately, though, his idea of showing affection involves a lot of leaping around, barking, and wrestling, and our little feline is terrified of him.  So in the end we had to place her in a boarding kennel, for her own peace of mind.  Hoping to bring her home today, but Hobbes (the huge beast) is still with us, so we will have to find a way to keep her calm and the two of them apart for a little bit longer.