Tell the FDA: Stop the Shock!

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Trigger/Epilepsy warning:

This post talks about torture of disabled children and adults, including a graphic video of a person being restrained and shocked.  The video also flickers and may cause seizures.

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Background
Who Should Comment
Instructions
Talking Points
Sample Comment
Credits

Background

On 22 April 2016, the Food and Drug Administration proposed a ban on electrical stimulation devices used to punish people with intellectual and developmental disabilities with electric shocks.  A ban like this should never have been necessary in the first place.  Unfortunately, it still is.

There’s one program in the country that uses electric shock as a form of punishment.  The Judge Rotenberg Center, a school and treatment facility for disabled children and adults just outside of Boston, has not only done this legally, but has also prevented state agencies in Massachusetts and New York from stopping it for decades.

It’s very likely that the FDA will adopt this regulation, but it isn’t guaranteed.  JRC has been able to mobilize its students’ parents many times now to successfully oppose laws, regulations and court decisions that would even limit its ability to shock its students.  Even if the ban goes into effect, there is a risk that JRC could convince the FDA to let it have a needlessly long transition period during which it can still use its shock devices.   JRC might also convince the FDA to let it continue to shock students who are already there, and only ban the devices going forward — which would be useless, because Massachusetts has already done the same thing.

To make sure that the FDA will follow through and put an end to JRC’s shocks once and for all, we need to send them as many comments on the proposed ban as possible before the comment period ends on 25 July 2016.

Who Should Comment

Everyone who believes that electrically shocking children and disabled people as punishment is wrong should send the Food and Drug Administration a comment supporting the ban.  It doesn’t have to be long — even a couple of paragraphs is fine.

Because earlier comments are already part of the record, it would be particularly helpful to hear from people who didn’t submit a comment for the advisory panel meeting in April 2014.  In particular, it is important for the FDA to hear from:

  • JRC survivors who experienced or witnessed the use of the shock devices
  • Parents of (former) JRC students who oppose the use of shock devices
  • Former JRC staff who now oppose its practices
  • Professionals such as behavior specialists, psychologists, psychiatrists and physicians who work with people with intellectual and disabilities who have significant support needs
  • National disability rights organizations
  • Disability rights organizations from states that send a significant amount of people to JRC such as Massachusetts and New York

Thank you for your help in protecting the human rights of disabled people.

Instructions

To submit a comment electronically, go to http://www.regulations.gov.

To submit the comment by mail, send a paper copy to:
Division of Dockets Management (HFA-305)
Food and Drug Administration
5630 Fishers Lane, Room 1061
Rockville, MD 20852.

All comments must include the Docket No. FDA-2016-N-1111 for “Proposal to Ban Electrical Stimulation Devices Used To Treat Self-Injurious or Aggressive Behavior.”  You should include your name, contact information, and the name of any organization you represent in your comment.

Comments can be any length, and can include relevant attachments such scientific research, case law, peer-reviewed articles or personal experiences that support your argument.

If you include confidential information in your comment, you should mail two paper copies.  The first copy should be complete and unredacted, with a header or cover page that says, “THIS DOCUMENT CONTAINS CONFIDENTIAL INFORMATION.”  The second copy should have the confidential information redacted.  If you want your comment to be anonymous, you should send a cover sheet with your comment that says that you would like your name and contact information to be kept confidential.

To read other comments and materials for ideas, go to http://www.regulations.gov and insert the docket number into the search box.

For further information, contact Rebecca Nipper, Center for Devices and Radiological Health, Food and Drug Administration, 10903 New Hampshire Ave., Bldg. 66, Rm. 1540, Silver Spring, MD 0993-0002, 301-796-6527.

Again, comments are due by 25 July 2016.

Talking Points

Your comment should say that you support the proposed ban on electrical stimulation devices used to treat aggressive or self-injurious behavior and include your reasons.  You should mention that these devices carry an unreasonable risk of serious injury, because this is the standard for banning a medical device. Here are some ideas for what else to include in the letter.

The shock devices are ineffective and unnecessary

  • There is no peer-reviewed research that shows that electric shock is an effective form of treatment for self-injurious or aggressive behavior.
  • JRC’s in-house research in support of its use of electric shock admits that it had lasting benefits for less than half of the people who participated in the study.
  • Students at the Judge Rotenberg Center are not the only people in the U.S. with dangerous behaviors; hundreds if not thousands of others are treated across the country using humane and effective approaches. Over the last 30 years there have been constant advances in our ability to understand and support people with dangerous behaviors.
  • There are a wide range of methods which are more effective in addressing dangerous behavior, have more lasting effects, and do not inflict pain on or dehumanize people with disabilities.
  • JRC uses electric shock in place of identifying the functions its students’ behaviors serve, providing counseling, offering psychotropic medication when needed, and teaching students coping strategies and alternative behaviors.

The devices are inhumane

  • JRC shocks its students for harmless behavior, such as nagging, keeping their eyes shut, and getting out of their seat, claiming that they could lead to dangerous behavior.
  • Video footage from JRC shows that the shock is a devastatingly painful experience.  The shows Andre McCollins, an 18 year old autistic black man, being shocked for refusing to remove his jacket. The shock causes him to fall to the floor. He is then held down by staff, strapped to a board, and shocked 30 more times over a seven hour period as he screams for help.  The additional 30 shocks were for either screaming or tensing his muscles while being shocked.
  • Two United Nations Special Rapporteurs on Torture have said that the use of electric shock at JRC is torture and violates international human rights standards.  In 2010, Special Rapporteur on Torture Manfred Nowak said that it would not be legal to use the shock device on a convicted terrorist.

The devices are dangerous

  • The shock device used at JRC can malfunction, shocking someone other than the intended target, or shocking someone wearing the device over and over until the wires are disconnected.
  • The weakest device used at JRC is many times stronger than a cattle prod or a dog collar, and both of these devices deliver a shock for only a fraction of a second. The shock delivered by these devices can last for a maximum of two seconds, which is four times as long as the shock from a cattle prod.

The devices cause physical and psychological harm

  • The devices cause first degree burns.  JRC staff have to rotate the electrodes placed on students’ skin to prevent burns, or even take students off the device temporarily to allow them to heal.
  • Experiencing, witnessing and living in constant fear of shock leads to symptoms of post traumatic stress disorder and depression, and can result in learned helplessness.

There is no informed consent

  • There are no meaningful protections for people at JRC. While the use of shock is court approved, it is a rubber-stamp process. There is no informed consent or opportunity to refuse treatment.
  • Parents and guardians of JRC students are not informed about what their children are being shocked for, or how frequent or painful the shocks are. JRC has forced parents to give up guardianship of their children, and then, when they find out what is happening to their children, cannot get them out of JRC without going to court to regain guardianship.

State laws have failed to protect JRC students from the use of shock

  • JRC has prevented Massachusetts and New York from banning the shock devices through lawsuits against both states.  The majority of JRC’s students come from these two states.
  • Both states’ regulations on the use of shock allow JRC to shock students admitted before a certain date.  JRC has sued the state of Massachusetts to overturn its regulation completely so that it can begin shocking newly-admitted students again.
  • State agencies have failed to pull funding from JRC and place its students in other settings.

The ban must be strict

  • The FDA should not allow JRC a long transition period to wean its students off of the shock devices.  JRC has known about a potential ban on the shock devices since the FDA sent them a warning letter in December 2012, and has had time to prepare alternative treatment plans for its students.
  • The ban should not be changed to allow for any exceptions through a grandfather clause.  This would make the ban useless since Massachusetts banned the use of shock on new admissions to JRC five years ago.
  • A long transition period or a grandfather clause would allow JRC to continue to put its students at risk of serious physical and psychological harm.

For more information to use in writing your comment, visit the Judge Rotenberg Center Living Archive.

Sample Comment

[Date]

Dr. Robert M. Califf, MD
Commissioner
Food and Drug Administration
5630 Fishers Lane, Room 1061
Rockville, MD 20852.

RE:  Proposal to Ban Electrical Stimulation Devices Used To Treat Self-Injurious or Aggressive Behavior (Docket No. FDA-2016-N-1111)

Dear Commissioner Califf:

I am writing to urge the Food and Drug Administration to adopt its proposed ban electrical stimulation devices used to treat people with disabilities who engage in self-injurious or aggressive behavior.  I am a [self-advocate / parent / professional / concerned citizen / etc.], and  I support the ban because electrical stimulation devices are inhumane and ineffective, and they put disabled people [like me / my family member / my clients] at unreasonable risk of serious injury.  [You may also want to include other relevant information about yourself, your family member or your clients in this paragraph, with the consent of the person you’re writing about.]

The Judge Rotenberg Center (JRC) in Massachusetts is the only program in the United States that uses electrical stimulation devices as a form of punishment.  JRC’s devices are several times more powerful than a cattle prod.  The shocks are extremely painful and can cause first degree burns.  Furthermore, the devices have been known to malfunction by shocking someone other than the intended target or shocking the same person repeatedly until the wires are disconnected.  JRC students who live in fear of experiencing or witnessing the shocks experience symptoms of post traumatic stress disorder and depression, including learned helplessness and thoughts of suicide.  For these reasons, experts from the United Nations have said that the JRC’s use of electric shock is torture that violates the human rights of the people in its care.

[Discuss any personal experience you had with JRC as a student, staff member or family member.]

Meanwhile, educators and service providers across the country use painless and effective forms of treatment every day to meet the needs of thousands of people with serious disabilities.  Research over the last several decades has helped professionals understand why some disabled people engage in dangerous behavior.   Based on this, they have been able to provide positive behavioral supports by adjusting the environment to meet their clients’ needs and helping them develop better ways of coping with stress.  These therapies have been shown to have lasting benefits for disabled people, including those who have significant support needs.  [Discuss your professional experience in working with populations similar to JRC’s, or therapies that were helpful for you or your family in addressing self-injury and aggression.] 

Despite the known dangers of and alternatives to using electric shock as a form of punishment, the states that send the most people to JRC have not been successful in protecting them from it.  JRC has prevented both Massachusetts and New York, which send it the majority of its students, from banning it through litigation.  As a result, both states have had to make exceptions that have allowed it to continue using the device.  Meanwhile, state education and social service agencies continue to fund placements for disabled children and adults at JRC, including those whose treatment plans allow it to continue shocking them.

There are sixty people who are still being shocked with electrical stimulation devices at JRC.  Each shock they experience causes them severe pain, and puts them at risk of further physical injury and psychological trauma.  Therefore, I strongly urge the FDA to adopt its proposed rule banning the devices, and to begin enforcing it as soon as possible without exceptions.

[Explain any documents that you’ve sent in support of your comment.]

Thank you very much for your time and concern, and for taking action to protect the well-being and human rights of people with disabilities.

Sincerely,

[Your name]
[Your title]
[Your organization]
[Your contact information]

Credits

Thank you to Lydia Brown for helping me with the formatting of this post and to Nancy Weiss for coming up with most of the talking points.

“Troubled teen industry” abuse: We can’t pretend it’s over yet

TW: Troubled teen industry; child sexual abuse; torture.

Within the last month, Midwest Academy, a residential program for teens that called itself a therapeutic boarding school, came under federal investigation for sexual abuse of a young person in its care.

Midwest Academy was a prototypical program in what is often known as the “troubled teen industry.”  Located in a small town in a remote part of Iowa, the program marketed itself to parents who could pay between three and five thousand dollars a month to have their children allegedly treated, educated, disciplined or some combination of the three.  It claimed to offer this assistance for any number of issues, ranging from physically abusing other people to being sexually active to struggling in school.  In doing so, it relied on what the Iowa Department of Human Services has politely called outdated methods, such as long-term confinement in an isolation room for days or sometimes weeks; food deprivation; stress positions; and sensory bombardment while in confinement.  Students, however, were not able to tell their parents or call the police about these abuses, as their communication with the outside world was severely limited and monitored.

The program is now, thankfully, closed and its owner, the alleged perpetrator Ben Trane, is facing potential prosecution for this incident and other crimes.  This is just the latest in a string of program closures over the last decade, resulting from either lack of business or active state intervention.

Based on this, and the fact that a number of states have added to or tightened their regulations over the years to eliminate or just limit abuse, a lot of people have come to the conclusion that the “troubled teen” industry and other behavioral modification programs are not a serious problem anymore.  In some cases, it’s because there are a lot fewer programs than there used to be.  In others, it’s based on the belief that the programs that have stayed open have changed enough that they are at least not as egregiously bad as they once were.

However, I can’t let go of a feeling of certainty based on pattern recognition that this fight isn’t over in a meaningful sense.

On the historical side of things, the industry has gone through a number of rises and falls since the seventies, and has come back selling all but the same product in new packaging after people have forgotten the last round of investigations, exposés and shutdowns, with the same eventual results.  For instance, fifteen years after Aaron Bacon died of peritonitis after staff at North Star Expeditions in Utah denied him food and shelter and accused him of faking his symptoms, Sergey Blashchishen died of dehydration on his first day hiking in the Oregon desert at Sagewalk after similarly being accused of malingering.  And those two were among the programs that actually shut down after the abuse came to light.

Furthermore, advocates (and society at large) haven’t yet taken on the task of making the legal and social shift necessary to not only close all remaining programs, but prevent another iteration of all the same problems in any form.  Systemic abuse of young people will continue as long as their parents’ and caregivers’ priorities are framed as rights that are given more weight than their own safety and autonomy.  It will continue as long as what would otherwise be called abuse can be convincingly reframed as loving discipline.  It will continue as long as our culture takes and promotes glee in punishing their disobedience to put them in their supposed place.  It will continue as long as we allow space for “last resort” measures that violate the most basic human rights, and then decide that noncompliance is a problem that calls for “last resort” solutions.

Because it’s not random that institutions that work off these ideas end up sexually abusing and even killing the kids in their care, even if that goes farther than what the framework itself generally allows for.  Intentionally making someone’s right to well-being and dignity conditional, especially on an arbitrary definition of good behavior, significantly lowers the moral threshold for abuse.  It both draws in and creates individual bad actors, and it provides them with a set of ready-made justifications for or denials of their actions once they come to light.

Advocates have a chance of ending these systems of abuse permanently if we challenge these beliefs head on and down to their core, however fundamental they might still seem to us, and we have to.  Even if we were to accept the argument that things have significantly improved, “not that bad” doesn’t mean good.  It means fewer people are being abused, possibly less harshly and less often (and more likely in subtler ways).  But if the number of young and disabled people being abused in these programs is above zero, it’s still too high to accept.

If you are a former attendee, a parent/guardian of a former attendee, or a former staff member at a behavior modification program within the last three (3) years, please send me your stories and any supporting documents.  This includes but is not limited to facilities such as boot camps, youth ranches, therapeutic or emotional growth boarding schools, residential treatment facilities, wilderness programs and fat/weight loss camps.  Please be aware that I am not offering to represent you as an attorney, and anything you send me that you don’t specifically tell me to redact may be made public.

Meltdown Bingo: Autistic Edition

TW/Content note: Abuse of autistic people; demonstrative use of disability slur; self-injury; in-depth descriptions of being in the middle of a meltdown.

UPDATE: The article on The Mighty that led to this post has been taken down.

UPDATE 2: It has been suggested to me that I note that the author of the piece, while writing as a parent, is also autistic, and that the original piece was co-authored by her autistic son.   I take issue with aligning oneself with an outside-looking-in perspective in how one writes about a marginalized group’s experience while also wanting to be seen as part of that group, but the main discussion should be about the experience and framing of meltdowns from an autistic perspective.

The Bingo Sheet meme has existed as a way for marginalized communities to catalog and make fun of the bad things they experience.  This usually takes the form of quoting common hurtful, invalidating or dismissive things they hear from other people.  For instance, there is American Racial Incident Bingo for the ways in which white people respond badly to instances of violence against people of color, and Fat Hatred Bingo for the ways the concern trolls and other people justify bias against fat people.

So, given this context, the autistic community was none too happy when an online disability publication called The Mighty published a Meltdown Bingo… as written from the perspective of a parent whose child is experiencing an autistic meltdown.  (Here’s a DoNotLink if you’re curious.)

Meltdowns can be unpleasant for onlookers and loved ones, but first and foremost, they’re awful for the autistic people going through them.  But this meme reframes it so that the autistic person’s well-being is the secondary concern… which turns the usual intent of the meme on its head.

However, because meltdowns (and what follows from them) are horrible, there should be a Meltdown Bingo… from an autistic perspective.  I’m posting one here, as well as explanations for each square, so that people can have a better idea of what a meltdown actually is and why treating it as something that an autistic person does to the people around them is a problem.

 

Meltdown Bingo

Image description: A black and white five-by-five square chart entitled “Meltdown Bingo: Autistic Edition.” See below for list of individual squares.

Anxiety / Sensory / Trauma Triggers: A meltdown is basically an anxiety attack on steroids.  Autistic people frequently have heightened sensory sensitivities to things like sound, touch or texture.  Things that are mildly annoying or even enjoyable to a lot of non-autistic people feel like an attack to us.  Many of us are also trauma survivors or have comorbid anxiety conditions, which being autistic only amplifies (because, contrary to common belief, we are not in fact mechanical beings made of pure logic).  When we experience a pretty severe trigger, or multiple triggers within a short amount of time, a meltdown can happen.

Feeling Trapped: This can overlap with the above, but it can also be a compounding factor.  For instance, if an autistic person is in an overstimulating environment which they’re not allowed or feel obligated not to leave, they may experience a meltdown that they otherwise would’ve been able to avoid by escaping the overwhelming situation.  This can also take place in a social context, where someone feels bombarded by criticism, too many demands, or just too much information and can’t figure out a way to disengage, leading to a meltdown.

Hunger Cycle: Another thing that autistic people struggle with is executive functioning — basically, getting up, getting going and following through on tasks.  This extends to meeting basic needs like feeding oneself.  And when you can’t get up the wherewithall to feed yourself, it becomes a vicious cycle, because the hungrier you are, the less you can make a decision about what to go eat and act in that direction.  And when you’re hungry (hangry, even), you’re more susceptible to all the other meltdown triggers.

Failure: Frustration is a major meltdown trigger for a lot of people, and frustration at oneself and one’s own limits is no exception.  This can trigger a meltdown all on its own, or can be a compounding factor once a meltdown’s already on the way and the person can’t find a way to prevent it (See also, Losing Control and Internalized Ableism).

Disruption of Plan or RoutinesThis is the other part of frustration — frustration at the situation, and of lacking control over it.  Many autistic people thrive on scripts, plans and routines to make it through the day, and tough situations in particular.  If something gets thrown off, especially in an already tense situation — for instance, if an autistic person’s flight is delayed and they’re missing their connection after having gone through the stress of dealing with a crowded security line — that little sense of security falls apart and all bets are off.  As you can see, a lot of meltdown triggers come back to anxiety in one way or another.

Losing Control: A lot of people seem to assume that autistic people are unaware of how they’re coming off.  We’re not, especially as time goes on.  But self-consciousness is the opposite of helpful once the Meltdown Express has left the station.  It adds pressure (in this case to keep or regain composure), and any additional pressure on top of whatever prompted the meltdown in the first place is only going to prolong it.

Shaking: Meltdowns can make you feel physically tense.  For me, it feels like someone has pressed something freezing to the back of my neck, or laid something extremely cold over my shoulders.  If someone has a motor tic or a tendency to twitch, it might also become more noticeable during a meltdown.

Can’t Move: One reaction to a meltdown can be an inability to get out of the overwhelming or anxiety-provoking situation.  This can be an executive functioning problem of getting the momentum to start moving.  However, it can also be a “play dead” type reaction, (often irrationally) hoping that if you can stay still and quiet, people won’t notice you and will leave you alone and give you the space you need to recover.

Losing Speech: Some autistic people never verbally speak, and some don’t type or use other forms of communication.  During a meltdown, autistic people who normally speak (or use nonspeaking forms of communication) may lose that ability.  This can be for reasons including but not limited to concepts no longer translating into language; being unable to cut through their own thoughts or the noise in the surrounding area enough to speak; or being unable to focus on producing speech while trying to regain control over oneself in other ways.

Flat(ter) Affect: A lot of autistic people also have a flat affect — limited facial expressions and a flat, monotone voice — but not always on a consistent basis.  In the middle of a meltdown, having an affect can be too damn hard, and (contrary to the kind of behavior people associate with meltdowns) an autistic person experiencing one can seem less expressive than usual.

Startle Response: Anxiety and sensory assault can cause a meltdown, but meltdowns can also make them worse… both in terms of lowering the threshold for a serious startle response and making it more pronounced than it would be otherwise.  This is why you don’t want to touch an autistic person or invade their space without their consent during a meltdown if at all humanly possible.

Run & Hide: An alternative reaction to not being able to move during a meltdown is to flee.  This can be to avoid whatever trigger caused the meltdown, or to avoid people and be able to (eventually) calm down on one’s own terms without the pressure of people watching.

FREE SPACE: Nothing Is Beautiful & Everything Hurts: Because that’s pretty much a summary of how a meltdown feels.

Can’t Stop Crying: This is what it sounds like.  Any (perceived) pressure, internal or external, to stop crying or otherwise appear outwardly calm will only make it last longer.

Directionless Anger: At its height, a meltdown can involve more than just anger at whatever caused it (though that’s certainly part of it).  It can be anger at everything that’s remotely like it.  Anger that such a thing is even possible or able to exist.  Anger at your own helplessness.  Anger at everything and everyone.  Trying to hold that anger in is frustrating.  On the other hand, venting it and breaking something (or hurting someone) will result in regret and shame.

Self-Injury: One of the ways that a person in a meltdown might try to vent or process these overwhelming feelings or sensations is to attack oneself.  A person can be self-injuring for a number of distinct but sometimes overlapping reasons.  It might be to drown out external input or one’s own thoughts with a more powerful sensation.  It might also be an attempt to punish oneself for either a failure that led to the meltdown or the meltdown itself.  Self-injury isn’t necessarily the same as being suicidal, and restraining or otherwise using physical force on someone who’s self-injuring can do more harm than good.

Internalized Ableism: In general, internalized ableism is taking in the negative ideas people have about disabled people and imposing them on oneself.  In this context, it’s closely tied to the feeling of losing control, and it can prolong a meltdown by adding intense feelings of shame, worthlessness and self-hatred to whatever emotions the person is already experiencing.  For instance, a person might feel like they’re a burden on the people around them; that they’re melodramatic or oversensitive for having a meltdown over what other people consider a minor issue; or that they’re weak for not being able to stop the meltdown once it’s started.

Sensory Overload: This is similar, and often tied to, having a heightened startle response.  Leading up to a meltdown, each unpleasant sensory experience feels more painful and/or frustrating than the last.  Once someone’s in a meltdown, their ability to cope is essentially gone, so every additional bit of sensory bombardment’s going to hurt a lot more than it usually would.

Fear of Punishment: There are few emotional experiences more unpleasant than feeling like you’re going to be punished for something out of your control.  And for many autistic people, this is a very well-founded fear, as a lot of us have experienced anything from being condescended to to being physically abused or coerced after already having to go through a meltdown first.  Like many other things on this list, this fear only makes the meltdown last longer.

Reflexive Aggression: As I mentioned before, meltdowns can actually be unpleasant for other people involved in the situation, and not just because they’re hard to watch.  If someone gets aggressive during a meltdown, it’s usually out of rage, fear or some combination of both and not out of malice.  This is another reason why putting more demands on or getting in the space of an autistic person having a meltdown is not a good idea, and backing off and waiting for them to take the lead is preferable.

Invalidation: Lastly, there are the common responses to meltdowns.  One of the less outright dangerous but still unhelpful and often callous responses to meltdowns is dismissing a person’s feelings and belittling them for reacting so strongly.  Common examples of this include “You’re overreacting!” or “Don’t be such a baby!” or “You’re just being manipulative!”  I’ll give you three guesses as to what effect this will have on a person having or about to have a meltdown, and the first two don’t count.

Public Humiliation: Another thing that people who believe that meltdowns are a choice will do is add to whatever embarrassment the autistic person is already experiencing by bringing attention to and making fun of the person’s meltdown.  One example of this is how some particularly awful people film their autistic loved one (using that term loosely here…) having a meltdown and put it on the internet for the public to see.  This doesn’t exactly help to establish trust or security in the people who are supposed to care for you, which feeds into anxiety and trauma, which lead to meltdowns, so… yeah.  Don’t do this.

Shaming: This encompasses both of the two above categories, but is a bit broader too.  It can also include name-calling (“You’re acting retarded!”), making it all about the other person’s reaction (“You’re embarrassing me!”), and accusing the autistic person of purposefully having a meltdown (e.g., calling it a “tantrum”).  This won’t just make the present meltdown worse, but future ones as well.  Refer to Internalized Ableism above.

Talked About As If Not Present: Some people will respond to a person having a meltdown by assuming that they’re automatically incompetent to understand their own needs or make their own decisions, and talk to whoever they assume to be the person’s caretaker about how to deal with the situation.  This is generally on the more benign side of things, but it’s still condescending and obnoxious, and it only adds to the feeling of having no control over one’s situation.  Unless it’s an emergency and someone’s going to get hurt, it can wait until the person themselves is ready to respond.

Restraint / Seclusion / Punishment: On the most severe end of things, sometimes people will use physical or other forms of outright coercion in response to meltdowns, either as a supposed safety measure or thinking that it will force the person to stop.  Short of stepping in to immediately protect someone from being injured and nothing further, this is a terrible idea.  Putting a fire out with gasoline level terrible.  Invading Russia on the first day of winter level terrible.  Really, unless you want to make this meltdown and every one after it a lot worse, do not punish someone for having a meltdown.

Now that I’ve gone through the list of what causes meltdowns, why they suck, and what’s not helpful to do when someone’s going through that, here are some things that help me to avoid or get through a meltdown.  They’re not surefire methods, but I’d like to think that they could be helpful starting points.

Sensory aids: For lack of a better term.  These are things that can help an autistic person manage sensory overload.  They include things like headphones and dark glasses to block out unwanted stimuli.  They can also include objects that a person can fidget with or run their hands over for pleasant sensory input.  I will often be wearing noise-cancelling headphones at crowded social events.  If I have a meltdown at home, I’ll often wrap myself in my weighted blanket while hugging something to calm down.

Prompts:  I might not think to leave a stressful situation or do something that could rather easily lower my stress level during a meltdown.  If someone there who knows me and what works for me can remind me — either by asking if I want to do it or suggesting that I do — I can sometimes get un-stuck and come out more or less okay.  The more specific this is, the better.  “Do you want to go get some food?” may be too open-ended because it requires me to come up with what kind of food I want and decide how I’d get there, whereas “Do you want to go to the store down the street and pick up a loaf of bread?” lets me start with something specific and come up with alternatives if needed.  This is most helpful leading up to or coming down from a meltdown, and not as useful at the height of one where almost any request or suggestion will feel like a demand.

Emotional support (stuffed) animals: Soft, squishy and/or fuzzy is as awesome to my senses as loud noises are bad for them, and having something to hug or wrap myself around is very comforting.  Also, sometimes it’s easier to believe that my cat loves me than it is to believe that the people around me will still like me after I’ve had a major meltdown.

Music: Like a lot of autistic people, I’m not all that good at making transitions.  For me, this is especially true in the realm of emotions.  I can’t flip a switch to go from anxious and upset to happy and calm like it seems a lot of people can.  But what can get me there eventually is listening through music I’m familiar with.  I might start with something angry-sounding, in a couple of songs be able to move on to something sad, then after a while of that, something calming, and eventually get to something that’s funny or energetic.  This allows me to feel the feelings and work through them at my own pace, while also blocking out unpredictable sensory input and replacing it with something familiar and controlled.

Bullying is abuse, and abuse has no perks

TW: Bullying and victim-blaming

I ran across the following link, or rather a screenshot of it, posted on Facebook by a good friend of mine.  The title itself was enough to get my hackles up, as an autistic adult who experienced bullying: “10 Perks Kids with Autism Get from Bullying”.

I will say this — I was honestly bracing for a lot worse, mostly because I’ve heard a lot worse, as far as blaming the victim and downplaying the impact of bullying goes.  Still, in attempting to for whatever reason find a bright side to bullying, the author, a speech language pathologist and Applied Behavior Analysis instructor named Karen Kabaki-Sisto, frames the problem and makes assumptions about how it plays out that don’t do the autistic youth who experience it any favors.

Making bullying about the “opportunities” it provides for parents, schools and peers takes the focus away from helping autistic victims of bullying.  

Four out of the ten points raised in the article are about how bullying can be beneficial to adults and non-autistic peers.  This implies that the suffering that autistic students experience because of bullying is somehow balanced out by non-autistic people becoming more “aware” of autism (which is fraught all by itself), or a child’s parents and school developing a better working relationship out of it.  These developments could benefit the child under the right circumstances, but if so, these aren’t so much “perks” of bullying as they are solving the damn problem.

Meanwhile, I have the sense that exactly zero autistic (former) students will be thanking their lucky stars that they were bullied so that the non-autistic people in their lives could finally get their act together.

The outcomes for an autistic victim of bullying will depend a lot on things that this article takes for granted.  

The article says that kids who go through, or more precisely learn to effectively respond to or cope with, bullying can end up having more friendships, healthier relationships overall, learning social skills and developing better self esteem.  In other words, we’re back to “it builds character.”

Whether what doesn’t kill autistic kids will actually make them stronger, though, depends on a lot of factors that are out of their control.  It requires that the school has an institutional culture that meaningfully prohibits and discourages bullying instead of tacitly condoning it.  It requires that a student’s parents are actively involved and supportive of their child, and/or that a child has another functional support network.  It will be affected by whether the child has an abuse history or other sources of stress and trauma in their life.  And it will depend on how severe and pervasive the bullying is.

By not taking the factors I listed (and probably others as well) into account, Kabaki-Sisto effectively downplays the impact that bullying has on autistic kids who are bullied under less-than-ideal conditions, who I suspect are the rule rather than the exception.  Without awareness of these factors and how they can impact a child’s ability to respond and cope, the idea that bullying can help children to grow gets treated as an expectation — one that many of us aren’t or weren’t able to meet.

The focus should be on bullies’ lack of good social skills, and not that of their autistic victims.

There are three points in the article that discuss how autistic people socialize as being relevant to bullying, and zero that talk about how bullies socialize.  At one point, the article talks about how bullying may lead autistic kids to learn verbal speech, facial expressions and nonverbal communication.  The implication here is that autistic people need to learn to be more like the people who bully them.  Especially without discussing how bullies and adult enablers must also change, this wrongfully puts the onus on bullying victims to prevent their own abuse.

Meanwhile, framing autistic communication and interaction as being characterized by deficits does nothing to dismantle the prejudices that Kabaki-Sisto attributes at least some bullying to.  If as an autism professional you’re going to put a positive spin on anything, it should be on the qualities of the population you work with, and not on the traumatic things that put more pressure on them to pass for normal.

The harms of bullying vastly outweigh any theoretical benefits

The beginning of the article briefly mentions that, yes, bullying is a real problem with real effects before jumping into what Kabaki-Sisto sees as its “perks.”  This disclaimer is woefully inadequate in this context, especially on the subject of something that many people still don’t recognize the true harms of.

Bullying, like more recognized forms of abuse, causes trauma that, contrary to what the article states, often limits someone’s ability to cope and function.  Here’s a few examples that I and many other autistic people have dealt with:

  • Loss of trust in friends and authority figures after people in those roles harmed you or let you be harmed.
  • Social withdrawal to avoid exposing yourself to betrayal in the first place, or because you the lose confidence and self-esteem you might have had before.
  • Tolerating abuse as natural or acceptable after years of being told to not take it personally, learn to take a joke, not be so oversensitive, disregard your own preferences and comfort levels, and otherwise internalize that you’re the problem.
  • Feelings of inadequacy — not necessarily (just) over what you were bullied over, either — as you try to prove to yourself and others that you’re not what the bullies said you were and that you didn’t deserve what they did to you.
  • Having a lower threshold for stress because of how your innate sensitivities and anxiety levels are compounded by internalized shame caused by bullying by peers and victim-blaming by authority figures, which can lead to a loss of or inability to use coping or other skills.

My best guess is that the author didn’t intend this article to be victim-blaming or minimizing, and instead was trying to encourage parents, teachers and other professionals to take steps that would help an autistic child through a bad situation.  However, highlighting or even creating a “bright side” of something that many people still treat as harmless undermines that purpose, and may end up having the opposite effect on people who already believe that it is.

Professionals and experts have an obligation to the marginalized communities they work with, and this article doesn’t meet that standard. 

My biggest concern with this article is that, because Kabaki-Sisto is a professional who works with autistic people, many parents, educators and other professionals will take her at her word, and at her framing for that matter — much more credit than they would give to autistic survivors of bullying.  While many autistic people are working to make sure our voices get heard, non-autistic “experts” still have a responsibility to the autistic community because of the relative influence they have.  For all the reasons I’ve talked about, this article doesn’t do well by autistic people, and in particular autistic children, who have limited abilities to improve their own situations.

Instead, I recommend that professionals who talk about autism and bullying:

  • Be clear on the impact, and especially how bullying can affect autistic kids differently and more severely than it does neurotypical kids.  There’s still a lot of people who don’t understand or believe this, and since you do (or at least should), you can’t afford to downplay it.
  • Put the responsibility where it belongs.  Autistic people’s atypical qualities don’t cause bullying — bullies do.  Schools and service providers have to be unequivocal about this in what they say and how they act, because the belief that autistic people are responsible for making sure they aren’t bullied enables bullying.
  • Highlight our strengths.  Autistic people by and large have many useful skills — even social skills.  We’re honest.  We’re upfront.  We’re loyal.  Talk about these things before you start in on our “deficits,” because that will affect how adults (and thus other kids) see us.
  • Think of things from our point of view.  Non-autistic people who work with autistic people often talk about our lack of “theory of mind,” but it would help if they would demonstrate it towards us more often.  This is no exception.  Think hard about what it would like to be an autistic kid whose peers tormented them day in and day out over sensory issues, special interests or taking things literally, and about what you would want if you were that kid.  Then make your recommendations from there.
  • Seek out information from autistic survivors of bullying.  Fortunately for you — and unfortunately for us — there’s a lot of us.  We can speak not only to what actually happened and how it affected us, but also to what interventions (or lack thereof) worked or didn’t work.  And a lot of us are strongly invested in making sure that what happened to us doesn’t happen to other people.

Written testimony supporting an aversives ban in Massachusetts

Trigger Warning: Torture / aversive behavior modification

Yesterday, the Massachusetts Joint Committee on Children, Families and People with Disabilities held a hearing on four bills related to the use of aversive (punitive) behavior modification on people with disabilities.  I and five other disability advocates attended and testified in support of the bills, particularly three of them which would ban or limit the use of aversives, and a number of others submitted written testimony.  My testimony is below.  I’ll be making a separate post about how you can submit written testimony later today.

TESTIMONY BEFORE THE JOINT COMMITTEE ON CHILDREN, FAMILIES AND PEOPLE WITH DISABILITIES

IN SUPPORT OF H. 89/S. 80 & S. 78

I am an attorney licensed in Massachusetts, New York and Oregon who works in the field of disability rights advocacy.  I am also an autistic person and a survivor of coercive treatment.  I am writing to urge the Massachusetts legislature to pass H. 89 and S. 80, which would ban the use of behavior modification procedures (“aversives”).  Alternatively, it should pass S. 78, which would limit the use of aversives in ways that would functionally ban their use.  Passing one of these laws would effectively protect people with disabilities against harmful, ineffective and outdated practices that cannot properly be referred to as treatment.

Aversives are harmful to people with disabilities

Aversives attempt to modify target behaviors through the use of punishments that cause physical pain or discomfort.  This by itself raises significant ethics and human rights concerns, especially in light of the fact that these interventions are used primarily on populations whose members have no legal right to refuse treatment and are rarely if ever given the opportunity to do so.  The United Nations has condemned the use of aversives as a form of torture in violation of international human rights law.[1]

In practice, reliance on the use of aversives in addressing behavior has repeatedly resulted in physical injury, lasting psychological trauma, and death.  In one instance, a young woman at the Judge Rotenberg Center (JRC) in Canton, Massachusetts named Linda Cornelison died from an untreated stomach ulcer. [2] JRC staff treated her reaction to her symptoms as misbehavior, and responded by punishing her with 61 aversives on the day she died, including pinching, spanking and forced inhalation of ammonia.[3]  The Massachusetts Department of Mental Retardation described JRC’s treatment of Cornelison as being “inhumane beyond all reason.”[4]

The more common harmful effects are no more acceptable for being less extreme.  For instance, the aversive devices currently used to electrically shock people as a form of punishment routinely cause first degree burns.  The use of aversives has also resulted in lasting psychological harm, including symptoms of post traumatic stress disorder, depression, learned helplessness and maladaptive interpersonal skills.  One survivor of contingent electric shock testified before the Food and Drug Administration’s Neurological Devices Advisory Committee that it had “instilled a lesson in me that it is okay to hurt me so long as they are trying to correct me.”[5]

There is no evidence that supports the use of aversives as an effective intervention

The Judge Rotenberg Center is the only facility in Massachusetts or the country that openly uses aversives.  JRC has been unable to produce peer-reviewed evidence that supports the use of aversives.  No study in the past forty years has demonstrated their effectiveness.

JRC conducted its own research on the use of aversives, which they did not submit for peer review and which resulted in a finding that aversives were not consistently effective in the long term.[6]  The fact that some people have spent years or decades of their lives receiving aversive interventions at JRC without a permanent reduction in their self-injurious or aggressive behavior supports this conclusion.

There are effective non-aversive interventions to address dangerous behavior

As knowledge about specific disabilities and their behavioral manifestations has increased over the past several decades, educational and treatment professionals have developed less restrictive and more effective forms of behavioral interventions.  These interventions involve identifying the possible reasons for why a person might be engaging in certain behavior and developing interventions that address its underlying causes. They can also be supplemented by other forms of treatment and accommodations such as occupational therapy, speech and language therapy, and the use of alternative and augmentative communication devices.

Schools and treatment providers across the country make use of these methods on a daily basis in working with people with disabilities, including those with significant impairments and behavioral difficulties.  When correctly and consistently used, they can allow disabled people to gain skills and meaningfully participate in their communities.

State legislative action is necessary in light of inaction by other government agencies

Despite the widespread recognition that aversives are harmful and ineffective, numerous government agencies in Massachusetts, in other states and on a federal level have been either unable or unwilling to fully prohibit their use.  The Massachusetts Department of Developmental Services’ efforts to do so have been hampered by a thirty year old consent decree between the JRC and a now-defunct state agency that does not reflect current research or more recent developments.  The New York State Education Department has been similarly prevented from enforcing its regulatory standards for the use of aversives through litigation.  On a federal level, the Food and Drug Administration has not yet banned the use of aversive conditioning devices despite the recommendation to do so by its advisory panel last year.  While these agencies struggle or refuse to take action, people with disabilities are still subject to the use of harmful aversives.

For all of the above reasons, I strongly support a total or functional ban on the use of aversives through the passage of either H. 89 and S. 80 or S. 78.  Thank you for your time and concern.

Shain M. Neumeier, Esq.
784 Washington Avenue #4
Albany, NY 12203
(323) 459-3390
s.m.neumeier@gmail.com

———————————–

[1]  See CBS News, Controversy over shocking people with autism, behavioral disorders (Aug. 5, 2014) , http://www.cbsnews.com/news/controversy-over-shocking-people-with-autism-behavioral-disorders/

[2] See Polyxane Cobb, A Short History of Aversives in Massachusetts 3 (2005).

[3] See id.

[4] See id.

[5] See Transcript of Record at 207-208, U.S. Food & Drug Admin. Neurological Devices Panel (Apr. 24, 2014).

[6] Matthew L. Israel, Nathan A. Blenkush, Robert E. von Heyn, & Patricia M. Rivera, Treatment of Aggression with Behavioral Programming that Includes Supplementary Contingent Skin-Shock, 1 Behavior Analyst Online Journals 119, 157 (2008).

Why don’t you get treatment for that?

Content note: Healthcare discrimination; involuntary treatment; general medical stuff.

The idea that someone is weak or irresponsible, or that they deserve to have medical or other related problems, because they decide not to get medical treatment is a great big bucket of nope.  Here’s a number of valid reasons for why people might not seek treatment, and why not to shame people over it:

Lack of money.  Because at least in the U.S., medical treatment is still not free for the most part.  It’s not even necessarily affordable for a lot of reasons, including the cost of insurance premiums, high deductibles that often come with more affordable health care plans, lack of coverage for certain forms of treatment, and specialists who refuse to take (a particular type of) insurance.

Circumstances that make taking the time or effort to get medical treatment unfeasible, which often comes down to a lack of money.  This includes having a job that doesn’t allow a person to take sick leave; not having access to childcare; and not having access to transportation that would get a person to a facility that provides the sort of treatment they need.

Medical anxiety, including phobias and post-traumatic stress disorder.  There may be some things that are not serious or urgent enough to be worth endangering a person’s mental health over if certain people, devices, procedures or environments are triggers for them.  This applies especially in cases where violations of someone’s boundaries or bodily autonomy in a medical context is the source of their anxiety.

Experiencing disrespectful treatment or discrimination in medical contexts.  Doctors and therapists can be and frequently are hostile to people who belong to certain groups, including but not limited to transgender people, fat people, asexual people, people with disabilities and women.  People may also have (repeatedly) experienced poor treatment in specific medical situations, such as having doctors refuse to alter a procedure to be less painful or anxiety-inducing because it’s inconvenient, or being dismissed as drug seeking when trying to get medication.

Having reason to believe that they will be subject to coercive treatment or otherwise lose control over their circumstances if they seek out care.  This especially applies to people with psychiatric disabilities, who risk being institutionalized if they seek out care during a mental health crisis.  Another example is how some states still have laws allowing parents to lose custody of their children if they have a (certain kind of) disability, which may be a deterrent to getting diagnosed or otherwise identified as having a certain condition.

Knowing through research or experience that the recommended, or only, treatments available are ineffective or unfeasible.  There’s a lot of reasons for why this could be, including having atypical reactions to medication or having another condition that makes a certain form of treatment dangerous or impossible.  Unfortunately, doctors aren’t always open to hearing this.  In some cases, there just aren’t any options (yet), or at least any that have a high likelihood of success.

Not experiencing the “problem” as a problem at all when it’s just something that’s unusual or stigmatized enough that it makes other people uncomfortable.  For instance, a person can have an unusual appearance but not want plastic surgery, or engage in unusual but harmless behavior such as tics or stimming* that they don’t want to take medication or undergo therapy for.

Having a low pain tolerance.  The necessity of a certain procedure or treatment regimen might or might not be worth it to a given person relative to the discomfort it might cause them, and they’re in the best position to do that cost-benefit analysis.  Which leads me to the last point, which is…

It’s a person’s own goddamned body and brain (and none of your business).  The only one who really knows what a person needs or can handle is that person themselves. In the end, they’ll be the one most affected by their decisions, for better or for worse.

I’m sure there’s reasons I’ve left out here.  There’s probably a similar list of reasons for seeking out medical care that other people don’t approve of or believe is necessary, which would include the last point on this list.  In either case, the overall point is the same: A person’s medical decisions are their own to make, and shame is not recognized as an effective form of treatment for any medical condition.

* Stimming comes from the term “self-stimulating behaviors,” which refers to things that autistic people do to seek or regulate sensory input.  This includes but is not limited to flapping one’s hands, rocking back and forth, making certain sounds and chewing on things.

Disabled genders

If an alien were to visit certain parts of Earth and take a look at many of the bathroom doors here, they’d see a regular bathroom for the figure in a dress, a regular bathroom for the figure in pants, and a single stall for the figure in a wheelchair.  Based on this, they might well come to the conclusion that human society recognizes three genders: man, woman, and disabled.  And, as far as how nondisabled people think about disability, they might not be totally wrong.

Disability is seen and treated as simultaneously emasculating and defeminizing.  On the one hand, it’s often assumed that disabled people lack some of the most prized qualities associated with masculinity — namely, physical strength and a keen intellect.  Meanwhile, we’re not considered to have positive traditionally feminine traits such as beauty and social graces either.  If anything, we get assumed to have the worst traits attributed to each gender: dangerous, out of control violence and sexuality on the masculine side, and contemptible dependency on the feminine.

But disabled people are also, too often, “its.”  As in “it was probably kept in its parent’s basement as their secret shame.”  As in “kill it before it lays eggs.” As in, “these aren’t people, these are animals.”  (And I wish I were making these up.)  Those might be some of the worst examples, but they show where we stand all the same.

So it’s both easier and… maybe not harder, but with an extra layer of fraught, to be a disabled person living outside the gender binary.  On the one hand, you’ve always been there anyways, so there’s no pressure to pretend to be anything else.  On the other hand, you’ve always been there anyways, so why does it matter?  Why do you need all these labels?  Why do you want to be weirder?  Why would you let your identity be defined by other people’s perceptions of you?

On a day to day basis, it might not matter, at least in the sense of having any grand, intentional purpose behind it.  It’s just us living our lives as close to our true selves as we can under the circumstances.

But in overall sense, as non-binary (and in particular visibly) disabled people, we’re in one of the best positions to create disabled variations on the theme of gender — more than just a nondescript stick figure sitting in a wheelchair next to the men and women.  We can be its if we want to be, but we can also be hes, shes, theys, eys, zies and more, and we can make it mean something other than “thing,” other than “monster,” other than “freak.”  Hopefully it’ll give nondisabled people something better to understand us by.  But more importantly, it’ll be there for other disabled people, cisgender or transgender of any sort, to find and draw from as fits them.

I don’t know the way there.  I’m still trying to pin down my own self and figure out who and what that person is, how to describe them, and how best to be them.  Once I have a better sense of all that, though, and maybe even on the way, I look forward to helping find some of the ways we can go.

What the blog name means

The title for this blog comes from a line in a song by Sonata Arctica, which is one of my favorite bands, called Cloud Factory:

“Have them write my story down,

Like silence(-)breaking sound.”

This line has stuck with me because of how it can be interpreted in two, to my mind, equally powerful ways, depending on whether that dash is there or not.  The more intuitive way to read it is that a person’s story can be the sound that breaks the silence, forcing recognition of, and eventually a change to, a situation that people have refused to acknowledge. However, it can also mean that someone’s story can be compelling enough that it cuts through all the noise and the chaos, stunning one’s surroundings into silence that allows for attention and clarity.

As far as why I named my blog after this line, you could say that it’s a kind of aspiration.  Neither my writing nor my story are powerful enough to break either the silence or the sound yet, but it’s something to try for.

Meanwhile, it also happens to be a pretty good title for a blog written by someone with sensory processing disorder.