Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Tag: PTSD

Autistic Shutdown Alters Brain Function

spanish moss

[image description: You are standing beneath a mighty live oak (Quercus virginiana) in central Florida, looking up at a heavy, gnarled tree branch dripping in Spanish Moss (Tillandsia usneoides). The sun is just hidden behind the branch and its light shines down through the limbs, illuminating the fluffy yet intricate twists of parasitic angiosperm, creating something of a magical, ethereal effect in the process. Photo copyright Sparrow Rose, 2016]


This is a re-post of a blog post that was originally posted on March 30, 2016.  Other than editing pronouns, it is identical to the original text.

Content note: descriptions of shutdown, meltdown, self-injurious activity, stress, brain function.

 


By now, pretty much everyone who knows much of anything about autism has heard of meltdowns — episodes of frustration and panic that seriously disrupt the lives of Autistic people, to varying degrees and amounts per person. But shutdowns don’t seem to get talked about as much as meltdowns and I run into people who, despite the blue-illuminated buckets of “autism awareness” out there, were completely unaware of the phenomenon of shutdown.

I had a pretty bad shutdown last week so I thought I ought to write a little bit about them. The people in my day-to-day life were unprepared to deal with a shutdown and that increased everyone’s stress levels. More education about shutdowns can’t hurt and it could help quite a bit.

Shutdowns and meltdowns are more similar than they might appear on the surface. One (somewhat simplistic but workable) way to think of shutdown is a meltdown turned inward instead of outward, much as some people describe depression as anger turned inward.

My most recent shutdown started off as a meltdown. My brain was going through all its usual short-circuits when some synaptic gap got crossed. Or something. One minute I was out of control, smacking myself in the face, as one does, and the next minute I was on the floor, unable to move. I started to get tunnel vision. My hearing began to get fuzzy. My vision closed and closed like turning off an old tube-driven television, closing down to a tiny dot of light that winked out just as my hearing entirely cut out, leaving me alone in the numbly terrifying darkness.

If you like to get your information from audio and video, you should take ten minutes to go watch Amethyst Schaber’s magnificent discussion of Autistic shutdown on their YouTube channel, “Ask an Autistic.” I’ll wait.

Shutdown is a response to overwhelm. It is a self-protective response — shutting down the circuits before they fry, to use computer/brain analogies — but it is as much a system overload as it is a system failsafe. And too much overwhelm for too long can cause some longer-term shutdown and loss of basic skills. We’re talking everything from forgetting how to tie your shoes to forgetting how to speak. And it can hit at age 14 or age 24 or age 54.

As Mel Baggs explained it: ” Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.”

I my case, it was just a matter of hours before I started coming out of shutdown, much like an ocean creature finally creeping onto a deserted beach after a long swim across the Marianas Trench of shutdown. But I only had one, isolated shutdown. An extended amount of time living on “personal emergency reserves” due to being forced to operate at a higher clock speed than my chips are rated for, combined with a series of shutdowns would have left me pretty burned out. I’ve gone 17 days in shutdown before, unable to speak or properly care for myself. This is why shutdowns must be treated with caution and this is why going to apparent extremes to avoid shutdown is not “lazy,” “spoiled,”  “entitled,” or any other judgmental adjective anyone has ever been tempted to drop at an Autistic’s feet. Or heap on an Autistic’s head, for that matter, since it’s often on the floor alongside the feet once shutdown hits.

Miller and Loos wrote about shutdowns and stress, both in a manner accessible to laypeople and in an academic paper. Their observations were based on a case study of an Autistic six-year-old girl who was prone to shutdown under stress. The authors found that shutdown behavior gets labelled as conscious avoidance but is more likely an involuntary physiological process caused by “stress instability,” an inability to regulate the body’s overwhelming response to stressors. The authors hypothesize that shutdown begins with the basolateral amygdala (BLA) in the brain and quickly spirals into a debilitating feedback loop: the BLA is involved in experiencing emotions. When the BLA becomes overstimulated, it can become hyperreactive, leading to extreme emotionality, heightened levels of fear, and social withdrawal.

The BLA can quickly become hyperreactive when exposed for too long to corticotropin releasing factor (CRF), a “stress-mediating neurotransmitter.” In other words, stress gives the BLA a hair trigger and the resulting explosions feed more CRF to the BLA, ramping the overload up in a ratcheting cascade of intense panic that finally flips all the breaker switches, resulting in shutdown. This is probably why my own meltdown tipped over into shutdown: I had been stressed for days with multiple meltdowns and my system just couldn’t handle any more stimulation so it shut off to prevent my brain from frying itself. My brain crawled up inside its own virtual Faraday cage to wait things out.

In the case of “the SD child,” Miller and Loos observed that one shutdown would make her extra vulnerable to more shutdowns during the following three weeks. It takes that long for the BLA to “come back down” from its hyperaroused state. It’s pretty easy to see how quickly things can take a bad turn if the brain is not given time to heal. This is the low-detail version of why I have a medical discharge from the Navy and why I was able to hold a series of minimum-wage jobs before the military but unable to get a job at all afterwards. When I signed up for the Navy, I didn’t understand my neurology. It was a devastating blow to not only fail at boot camp but come out of it so debilitated I couldn’t even keep a roof over my head any more.

This is why I speak so strongly about helping Autistic children to build low-stress environments that nurture rather than damage their neurology. This is why I warn so often against shaming Autistics for not “pushing the envelope” the way you think they ought to instead of the way that protects them from damage. Of course it’s healthy to step out of one’s comfort zone from time to time. What you need to remember is that the entire world is outside of an Autistic’s comfort zone. We live our whole lives outside that zone. Please recognize and honor that. I just can’t say that enough: we are trying and the obstacles can be as massive for us as they are invisible to you.

Treat shutdown  as the medical situation it truly is. Help us get away from bright lights and loud noises. Help us find a quiet space to re-regulate our nervous system. And be gentle with us as we recover from a neurological episode, understanding how delicately balanced our brains are after marinating in the biochemicals of stress. We need support, not blame. We need peace and stress-relief, not punishment. And, always, we need love, understanding, and acceptance.

ABA

misty summer sunrise in maine

image description: An early sunrise in late summer coastal Maine, the sky streaked with orange and the crevices in the land filled with a river of mist. This side of the mist is a picturesque tool shed surrounded by carefully curated “wild” vegetation. Photograph copyright 2016 by Sparrow Rose Jones

This is a re-blog of a blog post originally made on 7 October, 2014. An edited version of this essay appears in the excellent anthology: The Real Experts: Readings for Parents of Autistic Children, edited by the incomparable Michelle Sutton and available for purchase from Autonomous Press or a library or bookseller near you (and if it is not available at a library or bookseller near you, please do ask them to provide copies. Thank you.) This essay also appeared as a guest post on the Diary of a Mom blog and on the Tiny Grace Notes blog.

Content note: compliance-based training, labeled as therapy. Lasting trauma and PTSD from ill-advised treatments. Sexual abuse and rape. The lasting effects of ABA (Applied Behavioral Analysis). The risk of being told “not my ABA.”


This week, I watched a community implode. I’m not going to talk about that, though, because it was very painful to watch people I love being treated so badly. But a lot of the implosion centered around a topic I do want to talk about. That topic is ABA – Applied Behavior Analysis, a common type of therapy for Autistic children. I watched people fight around in circles, chasing their metaphorical tails. It will take some time and lots of words to unpack this topic, but I hope you will stick with me on this because it’s so important and there is a lot that needs to be understood here.

Here’s the argument in a nutshell. It gets longer, angrier, and much more detailed than this, but I am exhausted just from reading the fighting, so I’m boiling it all down to two statements. And both statements are correct.

Autistic adult: “ABA is abuse.”

Parent of Autistic child: “I’m not abusive and my child is benefitting greatly from ABA therapy.”

You read me right: both statements are correct. That is part of what I need to unpack today. I think the best place to start is with the fact that both people above are using the term “ABA”, but what they are actually talking about are usually two different things. First we need to define ABA.

Well, actually, first I want to put people at ease. Parents — it’s got to be painful to feel like a whole group of people are ganging up on you and telling you that you are abusing your child. You love your child. You want the best for your child. You are spending thousands of dollars out of pocket to try to give your child the best possible chance in life. You worry about your child. You feel like you never even knew what love was until your child came along. You are not abusing your child. And if something you are doing is harming your child, you want to know about it and stop it. It hurts to be told that you are abusive toward the child you love so much.

And my fellow Autistics — you grew up feeling picked apart. You were subjected to things that harmed you. You still have PTSD today from things that may have been done with your best interests at heart but were actually quite damaging. You don’t fit in to the world around you and the adults who were charged with your care when you were growing up were stumbling around in the dark when it came to trying to figure out how to raise a child like you were. It is triggering to see that so many of the things that hurt you when you were growing up are still being said and done to and about children who are so very much like you were when you were their age. You want to stop the cycle of pain and you want children to grow up happy, healthy, and loved. It frightens and angers you to see many of the “best practices” that Autistic children today live with.

And there is a good chance that the two of you — the Autistic adult and the parent of an Autistic child — are not even talking about the same thing when you say “ABA.” Major organizations (particularly Autism Speaks) have lobbied hard for Medicaid and insurance companies to cover ABA therapy for Autistic children. As a result, many therapists now call what they do “ABA,” even in cases where the actual therapy is very different from genuine ABA, in order to have their services covered by insurance. It’s similar to the philosophy of therapists I’ve known who don’t believe in diagnosing mental illness but put a name on their patients’ struggles anyway because many insurance policies only pay for therapy if the treatment is for a diagnosis listed in the DSM. That’s the main point that I wanted to make, but there’s still a lot to say on this topic.

If almost everything is being called “ABA” then what is actual ABA? And why do Autistic adults say it is abusive? What sort of warning signs should parents be watching for? What is harmful about certain practices? Those are a lot of questions to answer, but I will do my best. Bear in mind that I’m not a therapist — ABA or otherwise — and I’m not a parent. I’m one Autistic adult, one person coping with therapy-induced PTSD, one person exhausted by the all-out war I see every day between people like me and people who love people like me, one person who wants to see a better world for everyone (but, I admit, especially for Autistic people.)

ABA was developed by Dr. Ivar Lovaas. As a 1965 Life Magazine article explains, the core theory of ABA was that a therapist, “forcing a change in a child’s outward behavior” would, “effect an inward psychological change.” The article says, “Lovaas feels that by I) holding any mentally crippled child accountable for his behavior and 2) forcing him to act normal, he can push the child toward normality.”

Much has changed, but this core premise of Lovaas’ work remains solid. ABA’s core belief is that forty hours per week of therapy geared toward making a child externally appear as “normal” as possible will “fix the brokenness” inside that made the child behave that way. ABA believes in an extreme form of “fake it until you make it,” and because it is behaviorism at its most pure — that is, a psychological science that treats internal processes as irrelevant to function (Lovaas said, “you have to put out the fire first before you worry how it started”) — it treats behavior as meaningless and unwanted actions rather than as communication.

This approach is troubling for many reasons.

ABA strongly emphasizes the importance of intensive, saturated therapy and insists that it is crucial to get 40 hours a week of therapy for very young children. Think for a moment how exhausted you, a grown adult, are after 40 hours of work in a week and you will begin to understand why we get so concerned about putting a three-year-old child through such a grueling schedule. Being Autistic doesn’t give a three-year-old child superpowers of endurance. Forty hours a week of ABA is not just expensive, it is painfully exhausting. ABA maintains a schedule like this with the intention of breaking down a child’s resistance and will.

I understand that you are afraid for your child. Their future is unknown. You are worried about their ability to live a fulfilled life. You are worried about their ability to have self-supporting work and be taken care of after you pass on. And I understand that this fear, coupled with a deep desire to give your child the best you can give them, can lead you to accept the ABA attitude of “more is better.” But stop a moment and think about the capacity for sustained focus of the average three-year-old and consider what a therapy that tries to double (or more) that capacity is doing to a child. If you stress a child out or even traumatize them with extreme therapies, you are paradoxically increasing the chances of incapacitating PTSD in the child’s future. Yes, you want your child to develop as much as they are able to develop and you want them to enjoy their life and hopefully provide for themselves, but exhaustion and trauma are not going to aid those sorts of development.

Worse than the exhaustion of so many hours of therapy, though, is the heavy focus on making a child “indistinguishable from his peers.” The main goal of ABA is to make a child LOOK normal. This is insidious for a few reasons. first, it is the best way to get the parents to continue to co-operate with the therapists for many years. Of course you are going to be moved to tears if the therapist gets your child to look you in the eye or say “Mommy” to you or sit at the table and eat a meal without fidgeting or melting down. Of course you will feel like the therapist is making progress and healing your child. That is a very natural response. So you will see the progress and you will want to continue with ABA therapy and you will be very defensive when adults Autistics online suggest that what is happening in your home might be a bad thing. What was bad were fights every mealtime. What was bad was never hearing your child’s voice. What was bad were the judgmental or pitying stares you and your child got when you went out in public and people saw your child spinning around or flapping her hands or becoming so anxious you were forced to leave your groceries unpurchased and flee the store.

But if your child is getting classic ABA therapy, what you are seeing is an illusion. And what looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.

ABA therapists are trained to find out what your child loves the most and hold it ransom. Often, it’s food. If your therapist suggests withholding food as a form of behavioral therapy, run screaming. That is harmful. If your child’s therapist will not allow you to remain in the room during a session (they will usually tell you that your presence will be a distraction that will keep your child focused on you instead of on the therapy they need to be paying attention to) that is a big warning sign. If you are able to witness your child’s therapy sessions and your child is spending a lot of time crying or going limp or flopping on the floor or showing signs you recognize as indicators of anxiety or fear, beware the therapy. If the therapist insists on pushing forward with the therapy when your child is crying or going limp instead of giving your child recovery time, run screaming. Therapy that trades your child’s sense of safety in the present for a promise of future progress is exactly the sort of thing that Autistic adults mean when they talk about abusive therapy.

Therapy should make your child better, not traumatize them, possibly for many years, potentially for the rest of their life. A therapist might tell you that “a little crying” is a normal thing, but I was once an Autistic child and I can tell you that being pushed repeatedly to the point of tears with zero sense of personal power and knowing that the only way to get the repeated torment to end was to comply with everything that was asked of me, no matter how painful, no matter how uneasy it made me feel, no matter how unreasonable the request seemed, knowing that I had no way out of a repeat of the torment again and again for what felt like it would be the rest of my life was traumatizing to such a degree that I still carry emotional scars decades later. It doesn’t matter whether the perpetrator is a therapist, a teacher, a parent, or an age-peer: bullying is bullying.

In my opinion, the goal of therapy should be to help the child live a better, happier, more functional life. Taking away things like hand flapping or spinning is not done to help the child. It is done because the people around the child are uncomfortable with or embarrassed by those behaviors. But those are coping behaviors for the child. It is very important to question why a child engages in the behaviors they do. It is very wrong to seek to train away those behaviors without understanding that they are the child’s means of self-regulation. When considering whether you have made a wise choice in what therapy you are providing your child or not, you want to always remember a few cardinal rules: behavior is communication and/or a means of self-regulation. Communication is more important than speech. Human connection is more important than forced eye contact. Trust is easy to shatter and painfully difficult to re-build. It is more important for a child to be comfortable and functional than to “look normal.”

Work on things like anxiety and sensory issues first. Work on getting better sleep (both you and your child). Things like eye contact can come later, much later, and only if your child is comfortable with them. There are work-arounds. Lots of people fake eye contact. Lots of people have good lives with minimal or no eye contact. But forcing a child to do something that is deeply painful and distressing for no reason other than to make them look more normal is not just unnecessary, it is cruel.

I live two blocks from a behavioral clinic and I frequently walk several blocks out of my way to avoid walking past it because of the kinds of things I have seen when walking past the clinic. Let me tell you about the last thing I saw there, the thing that made me decide that I would rather walk an extra half-mile than risk seeing more ABA therapy on the sidewalk in front of the clinic.

A mother and father came out of the clinic with a little girl, around 7 years old by my best guess. Mother said, “Janie (not the actual name), look at me.” Janie didn’t look at her mother. The mother said to the father, “you know what to do,” and the father took hold of Janie and turned her head toward mother, saying, “look at your mother, Janie.” Janie resisted, turning her head away and trying to pull out of her father’s hands.

Mother crouched down and Father lifted Janie’s whole body up, laying her across Mother’s knee, face up. “Look at your mother, Janie,” father said. “Look at me, Janie,” Mother said. Janie began to whimper. Her body was as stiff as a board. Father held her body firm and Mother took hold of Janie’s head, “look at me, Janie,” Mother said.

I was glued to the sidewalk. I didn’t want to see any more but I couldn’t look away, couldn’t walk away. Janie began to moan and thrash her body. Father’s hands held her body steady as she kicked and flailed. Mother’s hands held Janie’s head steady. Both kept urging Janie to look at her mother. Janie’s moans turned to screams but neither parent let her go.

Finally, Janie’s entire body went limp with defeat. She apparently made eye contact because Mother and Father began to lavish praise on her. “Good girl, Janie. Good eye contact. Good girl. Let’s get some ice cream now.” Janie’s limp body slid to the sidewalk where she lay, sobbing. Father picked her up and carried her to the car, the whole way praising her submission. “Good eye contact, Janie.”

a drawing of eyes looking away with the caption forced eye contact hinders human contact

(This image – a drawing of eyes looking away with the caption
“Forced eye contact hinders human contact” – is a sticker and is also
available as a light t-shirt or dark t-shirt in adult and children’s sizes.)

What did Janie learn that day? I’ll give you a hint: it was not that people are more trusting of those who make good eye contact. It was not that she will appear more normal and thus fit into society better if she makes good eye contact. It wasn’t even that Mom really loves it when Janie connects with her through the eyes like that.

Janie learned that adults can have whatever they want from her, even if it hurts and even if they have to hurt her to get it. Janie learned that her body does not belong to her and that she has to give others access to it at any time, for any reason, even if she wasn’t doing anything that could hurt herself or others. Janie learned that there is no point in resisting and that it is her job to let others do what they want with her body, no matter how uncomfortable it makes her.

You may think I’m exaggerating or making this out to be more extreme than it is, but stop for a moment and imagine years of this therapy. Forty hours a week of being told to touch her nose and make eye contact and have quiet hands and sit still. A hundred and sixty hours a month of being restrained and punished when she doesn’t want to touch her nose and being given candy and praise when she does touch her nose for the 90,000th time. Nearly two thousand hours a year of being explicitly taught that she does not own her body and she does not have the right to move it in ways that feel comfortable and safe to her. How many years will she be in therapy? How many years will she be taught to be a good girl? To touch her nose on command? To make eye contact on demand? Graduating to hugs, she will be taught that she is required to hug any adult who wants a hug from her. She will be punished when she does not hug and praised and fed when she does.

And who will protect her from the predator who wants to hug her? Who will teach her that she is only required to yield her bodily autonomy for her parents and therapists but not for strangers? What if the predator turns out to be one of her therapists or parents? How will she resist abuse when she has had so many hours of training in submission? Therapy is an investment in the future, but ABA therapy is creating a future for Janie of being the world’s doormat. Is that the future Janie’s parents want for her?

If your child’s therapist believes it is more important for your child to comply with every command than to have any control at all over his or her body, run screaming. And don’t forget that a layer of training does not change the underlying neurology. ABA uses the same methods and theories as dog training and if I train my dog to shake hands, it doesn’t make him more human. It just makes him a dog who can shake hands. Similarly, if you train an Autistic to make eye contact and not flap their hands and say “I love you, too” and stay on task, it just makes them into an Autistic who can fake being not-autistic with some relative measure of success. Underneath the performance is still an Autistic brain and an Autistic nervous system and it is very important to remember that. Being trained to hide any reaction to painful noises, smells, lights, and feelings doesn’t make the pain go away. Imagine years of living with pain that you have been trained to hide. How long would it last before you broke down? Some Autistics last an amazingly long time before they break down and burn out.

And intensive ABA therapy will also teach a child that there is something fundamentally wrong and unacceptable about who they are. Not only is that child trained to look normal, they are trained to hate who they are inside. They are trained to hate who they are and hide who they are. They will work very hard to hide who they are, because they have learned to hate who they are. And as a result, they will push themselves to the brink of destruction. And when they finally crumble from years of hiding their sensory pain and years of performing their social scripts and blaming themselves every time a script doesn’t carry them successfully through a social situation, they will be angry at themselves and blame themselves for their nervous breakdown and autistic burn-out.

All those years of ABA therapy will have taught them that they are fundamentally wrong and broken; that they are required to do everything authority demands of them (whether it’s right or wrong for them); that they are always the one at fault when anything social goes wrong; that they get love, praise, and their basic survival needs met so long as they can hide any trace of autism from others; that what they want doesn’t matter.

Now you know what to watch for. Your child’s therapist may use the term “ABA” in order to get paid, but they might not be doing these harmful, degrading, abusive things to your child at all. If your child’s therapist is respecting your child, not trying to break down the child’s sense of self and body-ownership, treating behavior as communication rather than pointless motions that need to be trained away, valuing speech but not at the expense of communication, giving your child breaks to recover and not over-taxing their limited focusing abilities . . . then they can call their therapy anything they want to, but it is not ABA. (And hold on to that therapist! They are golden!)

And I hope that the next time you hear an Autistic adult say that ABA is abuse, you are compassionate. Remember the suffering so many of us endured. Know that we say those things because we love your children and want to help them. We do not say them because we hate you and want to call you abusers. We don’t hate you at all and we want to help you. Sometimes we are clumsy in how we go about it, because, well, we are Autistic and communication difficulties are part of that package. But know that when we attack ABA, we are not intending to attack you. We want your child to sleep through the night and laugh with joy and become toilet trained (on whatever schedule their bodies can handle — don’t forget that we tend to be late bloomers), and have a healthy, happy, productive, love-filled life.

We want you to rejoice in parenting and connect with your children on a deep and meaningful level. When an Autistic adult says “ABA is abuse,” you might be tempted to hear, “you are abusing your child.” But that is not what we are saying. Next time you hear an Autistic adult say “ABA is abuse,” please hear those words as, “I love you and your child. Be careful! There are unscrupulous people out there who will try to convert the fear you feel for your child’s future into money in their pocket at the cost of your child’s well-being.”

And if you are a therapist and you are upset when we say “ABA is abuse”, know that we are not talking about you . . . unless you are using shock punishments or making children endure long hours of arduous therapy beyond their ability to cope or teaching children that they do not have the right to say who can have access to intimacy with their body or not (and forced eye contact is a particularly nasty violation of a person’s control over their bodily intimacy.) If you are not the kind of therapist who we are talking about when we talk about the harm of therapy, then we are not talking about you! Thank you for being one of the good guys. We need more like you. Teach others what you know. Spread the love and help change the world, please!

Thank you for reading all of this. I know it was a lot of words, but this is such an important topic. The children are the future and I don’t have words to explain how painful it is when I see Autistic adults being verbally bullied and abused because they are trying to help the children by helping parents to understand more about the lived experience of autism and more about the kinds of things that can be very harmful to Autistic lives. I had over a decade of therapy in my childhood and much of it was not good therapy and I am explicitly damaged because of it. When I say ABA is abuse — when we Autistic adults say ABA is abuse — we are speaking from a collective wisdom gained through painful experiences that have left lasting scars on us. We don’t want anyone else to have to go through the pain we have gone through. Please respect where we are coming from and please do not add to the trauma by attacking us for trying to help others. Thank you.

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Edited to add: if you would like to see some video examples of helpful vs. harmful therapies, check out this blog post I made a month later on that topic:

Helpful vs. Harmful Therapies: What Do They Look Like?

Why I Call Myself Autistic

Tree at the Antietam Graveyard

image description: a tall, bright tree at a family graveyard on the Antietam Battlefield. The photograph has been put through post-processing to frame the tree in light while darkening the borders of the picture. Photograph copyright 2016, Sparrow Rose Jones

A reader named Karin posted a lengthy comment on my blog post from two days ago and I felt that all the time and effort that went into it deserved a full blog response. You can read Karin’s full comment under the blog essay What Is a Disorder?

Those of you who have read my latest book, The ABCs of Autism Acceptance, will recognize that I’ve covered this ground already, in my chapter “I is for Identity-First Language,”

 

Thank you, Karin, for your thoughtful and courteous comment. I also have anxiety, C-PTSD, and depression. These acquired neurodivergences are not, in my case, traits I was born with but neurological responses to abuse and ableism, both of which I’ve been handed heaping helpings of throughout my life. I am sorry to hear that you struggle with these very challenging neurodivergences as well.

 

I would tend to agree that using or preferring person-first language doesn’t necessarily mean a person views the trait being described as a bad trait, but most often it does and I see indications from your words that you do feel that person-first language is necessary to try to linguistically separate a person from an undesirable trait. Specifically, your response to the choice so many of us have made to refer to ourselves as Autistic shows that you feel autism is a highly undesirable trait that should be held as far away from a person as possible. I will explain further shortly; I am addressing your points in the same order that you made them.

 

You write, “I want others to see me as a whole person. My disability is PART of me, yes, and it affects many choices I make…but I also have personality traits and interests that have nothing to do with my disability.”

 

This is where Autism (and many other neurodivergences) are not like many other disabilities.

 

As an Autistic, I am a whole person. “Autistic” is a label of identification that contains full personhood within it, much as many other labels of identification. If I called someone a “woman” or a “Muslim” or “Black,” would you feel that it was important for them to use person-first language because someone might mistakenly forget that they are a whole person? Instead, perhaps, I should call them a “person with femaleness” or “a person who follows Islam” or …. I’m having a hard time with this last one, because every person-first construction I can think of feels so wrong. “A person with Blackness” is about the best I can come up with. My apologies.

 

These constructions feel awkward and wrong and sometimes even a bit insulting because….well, because they are. I am trying to separate out someone’s gender, religion, or racial identity from their personhood. I am suggesting that these core traits of personal identity somehow obscure the fact that women, Muslims, and Blacks are whole people. Ridiculous, right?

 

But people seem to feel so differently about Autistics. Is it because we’re disabled? I don’t think so. Do people question whether a wheelchair user is a whole person? I’m sure some ignorant people do, but most people don’t — as evidenced by the linguistic construction: a wheelchair user, not a person with a wheelchair (although I have seen “a person who uses a wheelchair” but not exclusively.) The same goes for someone who’s Blind or Deaf. We don’t tend to talk about a person with blindness or a person with deafness.

 

It is because Autism is a developmental disability and sometimes an intellectual disability. This is where I see people insisting most fiercely that person-first language is important to remind others that they are talking about a whole person. We have a cultural prejudice against those of us with neurological disabilities. Because the brain is the seat of pretty much everything — our senses, our movement, our thoughts, our memories, our drives, our communication — people take an extremely ableist view that a brain that is not like theirs might be the seat of someone who is not fully human.

 

That’s so important, I want to say it again in its own paragraph: people get so insistent about using person-first language to “remind” the world that Autistic people are whole people because they don’t fully believe it themselves.

 

Why would anyone need to be reminded of our personhood? Because people don’t really believe we have personhood. No one needs to insist that you remember that women are people. It’s self-evident that women are people, right? (Okay, maybe not always. But among reasonable people, yes, it’s self-evident.) Person-first language is a perfect example of Gertrude’s exclamation in Hamlet: “The lady doth protest too much, methinks.”

 

Another thing that’s different about autism, compared to many other disabilities: you talk about having personality traits and interests that have nothing to do with your disability. My disability is that I have a type of brain that is in the minority and I live in a society that looks down on those of us who are in a neurominority. So everything I do and love and think and feel gets pathologized as a “symptom” of a “disorder”  because it all comes from my beautiful but misunderstood brain.

 

You see, I actually am my brain and I am autism and all my personality traits and interests come from my Autistic brain and that’s why I refer to myself as Autistic rather than trying to create some kind of artificial separation between myself and …. Myself. It makes no sense to try to separate myself from autism because I am my brain and my brain is Autistic. And my brain is beautiful and wonderful and not something I want to try to disown by using person-first language to try to create some kind of pretense that my self is not my self due to shame about my self or a false belief that being my self makes me less than a whole person.

 

Rather than using unnatural language to try to convince others that I am a whole person (and I don’t know how I could convince someone I am a whole person by using the language of shame and lack of personhood) I prefer to do the work I’m doing right this minute: the work of explaining to people that their belief that Autistics are not whole people is illogical and bigoted and needs to stop. We should not have to hold ourselves out away from ourselves as if our identity were soiled underwear in order to be recognized as the whole people we are. It is an oppression to insist that we will only be viewed as whole people by disowning our own brains.

 

So it is a very different thing for someone with a “physical disability” (I think that’s a false dichotomy, but that’s another essay for another day) to use  person-first language, because a diabetic *can* be considered separately from their diabetes or a person with Ehrler-Danlos Syndrome (a connective tissue disorder I have) is a person completely independently of what their tendons and ligaments are doing. But my disability is one of cognition, perception, communication — it’s my brain that is different from the mainstream and my brain is me and using person-first language to try to distance me from my brain is actually denying my personhood rather than affirming it.

 

Karin writes, “I do have a question about the language I see many autistic people including yourself often using – “Autistics.” I understand calling yourselves A/autistic people, but not autistics. To me as a reader it sounds dehumanizing and distancing. Can you explain this so I can understand? I just cannot imagine ever calling myself a disabled, a cerebral palsied or other people with my condition cerebral palsies. I understand the concept of identity first in general, but why remove the person part?”

 

If it sounds dehumanizing and distancing, it is because you have internalized the ableism I was just speaking of — the idea that being Autistic is being lesser in some way, particularly in the area of being human. It is intriguing to me that you call identity-first language “distancing” when it is person-first language that strives to distance me from my own brain.

 

If you feel that calling myself Autistic has “removed the person part” you are admitting that you feel Autistics are not whole humans and require additional linguistic humanity to be added. By referring to myself by my neurotype, I am saying, “I am this type of human” just like a person referring to themselves by their gender says “I am this type of human.” No one suggests that identifying as “man” or “woman” has removed the person part because no one feels it needs to be added in the first place. Believing that Autistics need to have person added to our identity reveals an underlying belief that it isn’t already there, rolled into the definition the way it is for men, women, and all gender identities.

 

Karin writes (in reference to depression, anxiety, PTSD, etc.): “We need treatments. Cures. Adequate healthcare coverage for intensive therapy when needed, better medications that don’t have bad side effects or cost a fortune. I don’t think it is wrong to pursue treatments or cures for conditions while also saying “I am a valuable person as I am and deserve respect and opportunities, not stigma.””

 

I am not against taking medication for depression or anxiety or PTSD I am not against therapies. What I am against is people being defined as “mentally ill” against their will and forced to take medications. I can’t take medication for depression because the medication makes me very sick. I have required hospitalization for the effects of anti-depressants. I don’t think it’s wrong to pursue treatments for depression so long as it is up to the person to choose whether to take mind-altering drugs or not.

 

But I am very much against seeking a cure for autism. My brain has 100 billion neurons and there is no way to re-wire them and make me not-autistic. There is no way to cure autism in a living person. Autism is a type of brain and you cannot change my brain.

 

The only way to “cure” autism is to prevent it from happening and that’s exactly what is happening with genome projects like MSSNG. The aim is to determine autistic genetics so that pre-natal testing can determine which babies are developing autistic brains so that their mothers can be counseled to abort them. This is not science fiction. This is exactly what has happened with Down Syndrome. Pre-natal testing for Down Syndrome results in pressure to abort when the test comes up positive. Attempts to “cure” autism are thinly-veiled attempts to create a world where people like me are no longer born in the first place.

 

Think for a moment how that makes us Autistics feel, watching everyone hustle to funnel millions and millions of dollars into building a world without people like us while the vast majority of us are so under served that we die from preventable diseases and live in abusive situations, sub-standard housing, homeless, or in prison because no one had any better idea of where to warehouse us.

 

A “cure” for autism is not like a cure for Ehrlers-Danlos Syndrome. I would think it was grand if some gene therapy could cure my connective tissue disorder. I live with a lot of pain every day. My connective tissue is not “me.” I don’t think with it. I don’t dream with it. It is strictly for maintaining this physical body and moving it around, much like you describe when you write: “The majority of problems cerebral palsy causes for me can be alleviated by better wheelchair accessibility, improved home care services, and the ending of assumptions and bias against people with physical conditions.” That is how I feel about my EDS. It is not at all how I feel about being Autistic. My EDS is painful and impacts my mobility, but Autistic is who I am, to the very core.

 

Karin writes, “To be clear, I’m not championing research to cure autism, and especially not if it would involve abortion or any coercive treatment. I think we would lose something as a society/world without autistic people in it. But I also can understand that there are some autistic people who would want certain treatments, like perhaps something to make sensory stimuli less overwhelming.” and “I think it’s important that we don’t assume that just because we don’t want something, that doesn’t mean others won’t want it either.”

 

I have devices to make sensory stimuli less overwhelming. I am not against treatments.

 

But I am strongly against millions and millions of dollars being poured into a “cure”.

 

Helping me to navigate the world with less pain and more understanding is called accommodation and I am a strong supporter of accommodation. I support everything that makes life easier for Autistics. The problem is that “cure” and “treatment” are synonymous with things that make life harder for Autistics or erase us from the world completely.

 

I will never support “cure” because that can only be accomplished through genocide.

 

I am cautious in my support of “treatment”  because that word is used to describe so many tortures and torments that cause the depression, anxiety, and PTSD so many of us Autistic people live with.

 

It is our existence and core identity that are under attack and so long as this war against Autistics continues, I will boldly and proudly continue to identify as Autistic. I refuse to linguistically set my being off to one side so that I can present a socially-acceptable ghost of who I am to a society that will never fully  accept my personhood so long as I am working to hide my whole, natural humanity, no matter how many times I toss the word “person” at them.

 

I choose to live with integrity and authenticity, claiming my beautiful brain as my own. I am Autistic and I am proud of who I am.

The Fruits of Damaging Childhood Therapy

Hudson River

[image description: a photo of the Hudson River, taken by Sparrow Rose Jones. A bank of clouds hangs low in the sky. The river looks inscrutable and the way to it is mostly inaccessible, due to scrubby weeds and aging concrete structures.]


I cannot go to a therapist.

It’s not that I don’t have the money to go. I currently have some amazing insurance through Florida Medicaid. I pretty much have my pick of therapists, but I can’t go. This is going to be difficult for me really soon because I need to go to a gender therapist to prove I’m “stable” enough to be allowed to medically transition. I am concerned.

I am concerned because Kayden Clarke was killed by the police during a suicidal episode triggered by being told he could not have access to medical gender transition until his autism was “cured” (which, as you already know, translates to “never.”) I fear facing similar barriers in my own efforts to get my medical and psychological needs appropriately addressed. I am required to go to therapy; I cannot go to a therapist.

The reason I can’t go to therapy is because I am living with the C-PTSD that has resulted from years of iatrogenic damage resulting from childhood therapy. I’m going to unpack that sentence now, because it probably has some terms you aren’t familiar with and because I just put a decade of pain and a lifetime of aftermath into one sentence. Bear with me, gentle reader. It is impossible to talk about these things and almost as difficult to write about them.

C-PTSD is Complex Post-Traumatic Stress Disorder. It is not yet officially in the DSM, but there was strong debate during the shaping of the DSM-5 and C-PTSD was included in a subsection under PTSD. Childhood therapy is not my only source of C-PTSD, but it was a strong contributor. I encourage you to do some reading about C-PTSD and reflect on the symptoms carefully. The symptom picture will probably look familiar to you. I believe that recognition comes from the large overlap between C-PTSD symptoms and descriptions of autism. I believe that large overlap comes from the amount of trauma that so many Autistic people grow up with.

The Summer 1998 issue of The Communicator, the newsletter of the Autism National Committee (AUTCOM), includes a quote from the book Learning to Listen (1996) by Dr. Herb Lovett:

People who have been hurt in the name of therapy may not understand their plight any differently than survivors of cult abuse or sexual abuse. A common feature of post-traumatic stress syndrome is the flashback in which a person acts as if a memory is present reality…. every time they recall their previous maltreatment, unless their panic and rage are recognized as a function of stress, they are likely to be further stigmatized as “impossible to serve.” – from Can Aversives and Restraints Produce PTSD in People with Autism?

In addition to the trauma of being helpless and subjected to difficult therapies, Autistics have an extra obstacle when it comes to trauma, due to having a nervous system that is different from that of the majority of people and living in a world where we are “neurologically outnumbered,” as Carol Greenburg so aptly puts it. Just living in this world, with its sensory content that leaves Autistics overloaded and underfed in varying patterns and to varying degrees can be filled with trauma-triggering events that seem ordinary to people with nervous systems tuned more to the keys found in the majority of people. Ariane Zurcher has already written about our very active amygdalas and the risk of trauma. Rather than “re-invent the wheel,” I invite you to read her essay on Trauma & Autism.

I don’t believe that all therapists are bad. I don’t believe that all therapists who work specifically with Autistic children, teens, and adults are bad. I believe there are good therapists and helpful therapists. It wouldn’t be so upsetting to me that I can’t go to a therapist if I thought they were all bad and unhelpful. I would love to find a good therapist to help me work through my issues. I would especially love to find a good therapist who can help me with my medical gender transition.

I am not telling people to give up  on finding a therapist for their Autistic child. If your child needs help with one or more aspects of life, there’s nothing wrong with looking for a trained professional to help. What I am saying is that therapy should center around what your child needs and should serve your child’s best interests. I have experienced trauma in childhood therapy and it still haunts me and overshadows my life. I have witnessed Autistic children traumatized by bad therapy and the suffering was real and very visible. The entire family suffers when a child is traumatized by careless or harmful therapy, but the child suffers the most, of course. It makes me heartsick when I see it and I would give anything to save children and their families from those experiences.

Iatrogenic damage is damage that is caused by medical examination or treatment. What I am saying when I call my trauma iatrogenic is that it was directly caused by years of therapy. This is not as radical as it might sound. The mental health field acknowledges, albeit quietly, that therapy can lead to iatrogenic damage. Boisvert and Faust (2002) write that, “Iatrogenic symptoms may originate through the over-reliance on a belief system within which therapists interpret, reinterpret, or label clients’ characteristics or distress as pathological. Therapeutic communication that emphasizes pejorative language may introduce clients to this belief system.” This ties directly into the message of autism acceptance — so many Autistic adults (including myself) have told the world how harmful pathologizing language is.  These researchers have written an academic article that backs our claim up.

The evidence I’m sharing here is mainly about mainstream psychotherapy. It’s pretty intense data: Dr. Allen J  Francis estimates that as many as 15% of psychotherapy patients worsen with treatment. When you add in the special situations that arise in autism therapy, how much does that estimate rise?

I’m asking you to avoid therapies that teach your child that they are lesser or broken in some way. I’m asking you to avoid therapies that teach your child that the ways they move or communicate are wrong when those ways do not harm anyone and are being changed because they “look odd”  or make others uncomfortable for non-harmful reasons. I’m asking you to avoid therapies that take away your child’s ability to set boundaries and enforce them.

And I’m warning you about the life-long damage that can come from inappropriate therapies. I actively need to go to therapy and cannot because of the damage I have sustained in childhood therapy. I enter a therapist’s office and start crying uncontrollably and can’t stop until I leave. Therapy is dangerous for me because therapists see that reaction and, understandably, want to have me committed on the spot. My ability to benefit from therapy has been stripped from me, leaving me with fewer tools for coping with life and fewer mentors trained to help me thrive. The damage inflicted in childhood can last a lifetime. Approach therapy with caution and always keep your child’s best interests foremost.

 

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