All posts by Megan McLaughlin

About Megan McLaughlin

Historian, gardener, writer, activist, animal lover, autism mom (the kind that supports autistic people...)

Worst Practice

Trigger warning: descriptions of abusive practices.

Annoyance warning: this post is really long–sorry about that . . .

In November 2018, Alex Campbell, 13 years old and autistic, travelled to Washington, D.C., where he spoke to congressional staffers and disability activists about being physically restrained and secluded in his elementary school.  Alex is a seasoned advocate—he started talking to legislators in his home state of Virginia about these abusive practices at the ripe old age of ten, and the trip to Washington in 2018 was his second visit with federal legislators and staffers.  He plans to be a civil rights lawyer when he grows up.

But back when he was seven years old, Alex attended a private elementary school for children with disabilities.  He remembers being repeatedly dragged from his classroom to the school’s “crisis room,” a converted storage closet with black-painted walls and a tiny window.  The teacher or administrator who took him there would shove a heavy desk against the door to prevent it from opening and then leave him alone, confused and terrified.  “When I asked for help or asked if anyone was still there, nobody would answer,” Alex said. “I felt alone. I felt scared.”[1]  At the time, Virginia had no law requiring such schools to inform parents if their children were restrained or secluded, and the principal of Alex’s school threatened to confine him to the “crisis room” for the rest of the year if he told his parents about what was happening.  However, his mother and father soon noticed that their son had unexplained bruises, and that he was becoming more and more anxious.  Eventually, he broke down and told them what was happening to him at school.

Sadly, Alex Campbell’s history is far from unusual.  Shortly after Alex spoke in Washington for the second time, another autistic thirteen-year-old, Max Benson, was held for a prolonged period in a dangerous “prone restraint” by staff members in the private school for children with disabilities he attended in California.  Max later died in hospital from his injuries.  The use of prone restraints in schools is against the law in California, but the school in question (which has since gone out of business) frequently used them anyway.[2]

The U.S. Department of Education’s Civil Rights Data Collection reports that roughly 124,000 students were restrained or secluded across the country during the latest period for which data is currently available, the 2015-16 school year.[12]  But this is certainly an undercount, and perhaps by a large amount.  Many school districts do not collect the relevant data, or they fail to deliver it to the Department of Education as required.  Even when they do make a report, the information provided may not be accurate.  For example, the internal records of Cedar Rapids Community School District in Iowa showed that there had been 1,400 restraint/seclusion incidents from 2012-14—but none of these was reported to the U.S. Department of Education.  Iowa’s two senators launched an investigation into this underreporting.[13]  Fairfax County Public Schools in Virginia likewise reported zero cases of restraint or seclusion during the 2015-16 school year.  However, following an investigation by a journalist from American University, Fairfax County Schools reported 1,700 cases in 2017-18.[14]  In the CRDC survey, roughly 70% of all school districts nationwide reported zero cases of restraint and seclusion in 2015-16.[15]   If their reports were anything similar to those of Cedar Rapids or Fairfax County, then many, many cases of children being restrained and secluded have probably been kept hidden from the Department of Education’s view.

Children with disabilities (primarily children with autism and ADHD) are much more likely than those without disabilities to face physical restraint and seclusion (isolation), as well as other forms of discipline such as suspension and expulsion.  According to the U.S. Department of Education Civil Rights Data Collection for the 2015-16 school year, while children with disabilities represented only 12% of students nationally, they represented 71% of those suffering restraint and 66% of those facing seclusion.[3]   Children of color are especially likely to face restraint, seclusion, and even arrest, for minor infractions of school discipline.  After eleven-year-old African-American Kayleb Moon-Robinson, who is autistic, kicked a trash can during a meltdown in 2014, his Virginia school’s police officer filed charges of disorderly conduct against him in juvenile court.  The punishment imposed by the school was that he was only allowed to leave the classroom after his classmates had done so.  A few weeks later he broke this rule by leaving with the other kids.  The school principal called the police officer, who grabbed Kayleb and tried to take him to the office; when the child resisted, he was slammed down, handcuffed, and taken instead to juvenile court, where he was charged not only with a second count of disorderly conduct (a misdemeanor) but also with “assault on a police officer” (a felony).  A judge later found him guilty on all charges, and Kayleb faced doing time in a juvenile detention facility, but in the end the case was dropped and he transferred to a different school.[4]  The Department of Education’s Civil Rights Data Collection does not break down data by both race and disability, but it does note that while African-Americans make up only 15% of the student population in the United States, they represent 27% of students restrained and 23% of those secluded.[5]  

Children have few legal protections against these practices. A 2012 resource document from the U.S. Department of Education explicitly states that restraint should not be used “except in situations where the child’s behavior poses imminent danger of serious physical harm to self or others.”[7]  Yet as of December 2016, only 22 states required that a child must pose an immediate physical threat to her/himself or others before restraint can be used.  Elsewhere, restraints could be applied in cases where a child simply disobeys a teacher or acts out in non-threatening ways—as, for example, in the case of Thomas Brown of Denton, TX, who had a meltdown when he couldn’t get his shoes on and disrupted his class by swinging a computer mouse around.  Eventually Thomas hid in his classroom cubby and refused to come out.  At this point—when he actually posed no threat to anyone—his teacher and the school police officer dragged him out of the cubby, down the hall, and into the seclusion room, where he was handcuffed by the police officer.[8]  David Sims, of Conroe, Texas, who is also autistic, was not even having a meltdown when he was restrained.  Instead, he was pretending to point an imaginary rifle at his art teacher.  Nevertheless, he was handcuffed and taken to the local Juvenile Detention Center and held there for several hours.[9]

As of December, 2016, only 24 states forbade the use of mechanical restraints such as handcuffs or leather straps.[10]  Many others continue to permit tying children to their seats with handcuffs, straps, duct tape, and other materials—a significant safety hazard in case of fire or other emergencies.[11]  Only 20 states forbade the use of sedatives (“chemical restraints”) to keep children under control.  17 states continued to allow the use of physical restraints that impede breathing (such as prone restraints).  Only 23 states banned non-emergency seclusion of children with disabilities—elsewhere autistic children can still be locked in “crisis rooms,” storage closets or even bathrooms, sometimes for hours, for minor infractions.  Only 32 states required that disabled children remain under observation while in seclusion, even though lack of observation could and can lead to the injury or even death of an overwhelmed child.  As I write this, there is still no federal law regulating the use of restraint and seclusion in schools (this is what Alex Campbell has been lobbying for). 

Restraint and seclusion are dangerous practices, both for the children subjected to them and for the staff implementing them.  They expose children (and staff) to physical dangers:  bruises, bloody noses, broken limbs, and—in the case of the children—even death.  Still more disturbing, however, are the psychological effects.  Remember that autistic children do not “choose” to have meltdowns.  They are unable to control themselves during a meltdown, and are usually very frightened by what’s already happening to them—even before they are “punished” by an exasperated teacher or an untrained police officer.[16]  When that happens, they usually don’t understand why this is happening to them—they just know that they are being manhandled and locked up, and as a result they fight back even harder.  Hannah Grieco reports that her son needed a year of “intensive therapy” to recover from the restraint he suffered at school.[17]  An autistic blogger remembers being secluded in school for hours at a time as “torture.”[18]  Many children who have been subjected to these practices suffer from PTSD.  They may cry, scream or hide when they even see their school; they may beg their parents not to leave them there.  Some have committed suicide during seclusion (when a school has failed in its duty to keep children under observation) or at home, after repeated incidents of seclusion.

Finally, it is the case that restraint and seclusion are completely ineffective as forms of discipline.  As former Secretary of Education Arne Duncan put it: “there continues to be no evidence that using restraint or seclusion is effective in reducing the occurrence of the problem behaviors that frequently precipitate the use of such techniques.”[19] The techniques may teach children to fear their teachers, aides, or school resource officers, but they do not teach them anything at all about controlling their own behavior—which is out of their conscious control anyway.  If anything, they tend to make autistic students more anxious, more stressed, and therefore more likely to suffer meltdowns, creating a vicious cycle of stress, classroom disturbance, punishment, escalating stress, further disturbance, and so on.  In dealing with meltdowns, immediate resort to restraint and seclusion represent “worst” practice.

There are better ways.


[1] Hannah Rappleye and Liz Brown, “Thirteen-year-old Activist with Autism Wants to Close Seclusion Rooms at Schools,”  NBC news report, November 23, 2018: https://www.nbcnews.com/news/education/thirteen-year-old-activist-autism-wants-close-seclusion-rooms-schools-n935356.

[2]  Sawsan Morrar and Phillip Reese, “School Where Student with Autism Collapsed and Later Died Violated Restraint Rules, California Regulators Find,” The Sacramento Bee, December 8, 2018:  https://www.sacbee.com/latest-news/article222799470.html.

[3] U.S. Department of Education,“2015-16 Civil Rights Data Collection: School Climate And Safety,” p. 12https://www2.ed.gov/about/offices/list/ocr/docs/school-climate-and-safety.pdf.

[4] Susan Ferriss, “Virginia Tops Nation in Sending Students to Cops, Courts:  Where Does Your State Rank?” The Center for Public Integrity website, April 10, 2015; revised February 19, 2016:  https://publicintegrity.org/education/virginia-tops-nation-in-sending-students-to-cops-courts-where-does-your-state-rank/ ; Susan Ferriss, “Virginia drops felony charges against sixth-grade boy with autism,” Reveal (published by the Center for Public Integrity), March 15, 2016:  https://www.revealnews.org/article/virginia-drops-felony-charges-against-sixth-grade-boy-with-autism/.

[5] U.S. Department of Education, “2015-16 Civil Rights Data Collection: School Climate And Safety,” p. 11:  https://www2.ed.gov/about/offices/list/ocr/docs/school-climate-and-safety.pdf.

[6] National Disability Rights Network, “School Is Not Supposed to Hurt:  Investigative Report on Abusive Restraint and Seclusion in Schools”:  https://www.ndrn.org/wp-content/uploads/2019/02/SR-Report2009.pdf.

[7] U.S. Department of Education, “Restraint and Seclusion:  Resource Document,” 2012:   https://www2.ed.gov/policy/seclusion/restraint-and-seclusion-resource-document.html.

[8] “Denton ISD Faces Scrutiny After Officer Seen Handcuffing, Pinning Down Autistic Child,” report on the Dallas-Fort Worth CBS affiliate: https://dfw.cbslocal.com/2018/08/11/denton-isd-officer-seen-handcuffing-pinning-down-autistic-child/;  see also Tom Steele, “Autistic child severely bruised after school officer handcuffed him, Denton parents say,” Dallas News, May 15, 2018:  https://www.dallasnews.com/news/denton/2018/05/15/denton-parents-say-autistic-child-severe-bruises-after-school-officer-handcuffed.

[9] Matthew Martinez, “12-Year-Old with Autism Arrested for Using ‘Imaginary Rifle’ in Art Class, Family Says,” Fort Worth Star-Telegram, May 10, 2018: 

https://www.star-telegram.com/news/state/texas/article210879114.html ;  Maria Perez, “Texas Student with Autism Arrested for Allegedly Firing ‘Imaginary Rifle’,” Newsweek, May 12, 2018:  https://www.newsweek.com/imaginary-rifle-autism-texas-923316.

[10] These and the following numbers come from Jessica Butler, “How Safe is the Schoolhouse?:  An Analysis of State Seclusion and Restraint Laws and Policies,”  published in 2017 for the Autism National Committee:  https://www.autcom.org/pdf/HowSafeSchoolhouse.pdf.

[11] See for example, the cases of a little girl in Indiana: https://www.apnews.com/6c1bf5670c23465c9d48ce4a77634131;

And a little boy in Florida who spent all day strapped to a toilet training chair with his pants down around his ankles:  https://www.jacksonville.com/article/20090320/NEWS/801237594.

[12] Jenny Abamu, “Children Are Routinely Isolated in Some Fairfax County Schools.  The District Didn’t Report It,” on WAMU radio, updated March 13, 2019:

[13] Erin Jordan, “Senators Ask Federal Probe of School Seclusion Reporting,” The [Cedar Rapids] Gazette, June 3, 2018:  https://www.thegazette.com/subject/news/education/senators-ask-federal-probe-of-school-seclusion-reporting-20180603.

[14] Jenny Abamu, “U.S. Schools Underreport How Often Students Are Restrained Or Secluded, Watchdog Says,” All Things Considered, on National Public Radio, haveJune 18, 2019—based on a report from the U.S. Government Accountability Office:  https://www.npr.org/2019/06/18/731703500/u-s-schools-underreport-how-often-students-are-restrained-or-secluded-watchdog-s.

[15] Jenny Abamu, “U.S. Schools Underreport How Often Students Are Restrained Or Secluded, Watchdog Says,” on All Things Considered, on National Public Radio, June 18, 2019—based on a report from the U.S. Government Accountability Office:  https://www.npr.org/2019/06/18/731703500/u-s-schools-underreport-how-often-students-are-restrained-or-secluded-watchdog-s.

[16] Schools general deny that restraint and seclusion are used as punishment, but it is hard to see how aversive actions that do not teach children anything (see below) are anything else.

[17] Hannah Grieco, “Restraining Students with Disabilities is Harmful,” The Baltimore Sun, April 22, 2019: 

[18]  Anonymous, “Seclusion as Punishment,” in the “We Always Liked Picasso Anyway” blog, October 3, 2013:

https://autistictimestwo.blogspot.com/search?q=seclusion.

[19] U.S. Department of Education, “Restraint and Seclusion:  Resource Document,” 2012, p. iii: https://www2.ed.gov/policy/seclusion/restraints-and-seclusion-resources.pdf.

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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.