Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Category: Trauma

How Autism Can Mimic Avoidant Personality Disorder

Rose

[image description: a sketch by Sparrow Rose. A rose, colored red,  with different geometric patterns on each petal and the name Gertrude Stein inscribed on the green stem. The rose is superimposed over a circle of blue letters with the Stein quote, “A rose is a rose is a rose” encircling infinitely, like the plates Stein’s lover, Alice B. Toklas, used to sell.]


I stumbled across an article on Lifehack about Avoidant Personality Disorder  this morning. I read through the article, alternating between, “yes, this is exactly me,” and “a mental disorder is only a disorder if it’s not true. You’re not paranoid if they really are out to get you.”

Finally I got to the section that said:

“What is known, however, is that symptoms first start manifesting from infancy or early childhood. The child will display shyness, isolation, or discomfort with new places or people. Often times, children who do exhibit these tendencies grow out of it, but those with the disorder will become even more shy and isolated with age.”

That clinched it for me.  I do not have Avoidant Personality Disorder if it is something that develops in childhood.  This is not to say that someone else would not have both autism and Avoidant Personality Disorder at the same time. I am not a medical or psychological professional so I can only talk about my own experiences and perceptions here, in hopes that it will help others feel less alone or maybe give someone new things to think about and new avenues to explore.  Even if I’m simply venting my own frustrations to the void, that’s helpful for me. So I’ll continue.

I effectively have a mimickry of Avoidant Personality Disorder, caused by 50 years of being bullied by others. I have carefully studied the bullying and done whatever I could to make it stop. I have changed the way I dress, the way I wear my hair, my grooming habits.  I have tried Dale Carnegie’s methods outlined in his book How to Win Friends and Influence People, I have tried sticking with social groups that center around my interests, I have tried surrounding myself with only fellow Autistics, I have tried blending into the background, and I have tried saying nothing at all ever.

The bullying will never stop. After half a century of it, I have come to realize this.  It doesn’t stop when you grow up, or when you go to college, or when you find a job, or when you find work that you are good at, or even when you find a community of people who are similarly brained and have all grown up with the same crushing bullying themselves.  It never stops and the only place where there is no bullying is alone.

I’m not saying this to get your pity.  As graffiti in an ADAPT video says, “piss on pity.”  I am saying it because it is a solid fact that needs to be acknowledged.  No amount of zero tolerance policies can police the bullying away.  No amount of social skills training can teach the victim how to stop being whatever part of who they are that attracts the bullies.  The only way to stop the bullying is to stop letting bullies have access.

Temple Grandin does it with money — she has enough money to pay people to form a human shield around her so that she can live in a bubble where bullies are not permitted entrance.  I don’t have that kind of money and am not likely to ever have even a fraction of that kind of money .  The only way I can build a bully-free bubble in my life is to emulate Avoidant Personality Disorder.  It wasn’t a conscious choice on my part … inch by inch, the bullies drove me back into myself.  Like a slinking night creature, I have crept further and further from the glowing campfires of humanity and into the safe and soothing darkness of solitude.

Those who counseled me to “just put yourself out there”  are complicit with the bullies.  Those advisors have encouraged me to boldly stride behind enemy lines, unarmed. Sometimes they even blamed me for the shelling I received as a result.

When I tell people about the bullying, I get a few different reactions.  One popular answer is to tell me I’m bringing it all on myself.  If I just weren’t so … If I didn’t insist on always …  If I’d just stop … And why can’t I blend in better?

Another answer I get is that I’m blowing it all out of proportion.  Everybody gets teased.  It’s part of how people make friends with each other and I just need to lighten up a little and learn to laugh at myself.

Some well-meaning people tell me that they can’t see how anyone would want to bully me because I’m such a kind and gentle, loving person.  The thing is, whether I’m kind or whether I’m a jerk, the bullying is real and denying it could be possible is calling me a liar when I tell you that it does happen.

Let me talk a little bit about the traits of Avoidant Personality Disorder from the article — the traits that caused me to briefly question whether I might have Avoidant Personality Disorder or not. (I don’t.  Through most of my childhood, I virtually flung myself at others.  I am an extrovert and I spent my 20s seeking out human company all the time, alternating between hope and despair.  It has only been in middle age that I have begun giving up and avoiding people.  The accumulated years of bullying have finally weighted me down sufficiently to provoke an avoidant, hiding response to life.)

Reluctance to be involved with people unless certain they will be liked.

This has been me for a long time.  Lately I’ve been feeling pessimistic enough about people liking me that I’m reluctant to be involved with anyone.  This is not just the depression talking (although that’s a contributing factor, for sure.)  I have gotten enough screen shots handed to me of people who smile to my face and then talk hate about me behind my back that I’ve learned not to trust anyone.

But even before I reached this critical mass, I have had a tendency for years to assume the worst.  If someone is not clearly welcoming toward me, I assume they are just tolerating me and I try to go away before they reach the end of their tolerance.  This is learned behavior on my part.  After experiencing the same thing again and again, my pattern recognition finally kicked in.  It is other people’s behavior that has taught me that someone who does not make it clear that they enjoy my presence might eventually “snap” and start abusing me because I didn’t get all their hints. Hints that I can’t see.

I can see people welcoming me and I can see people abusing me, but I can’t see all those little nudges and hints and insinuations and sarcasms, and social corrections. So when people aren’t clearly welcoming, it’s an act of self-preservation to go away before the abuse starts.

Takeaway lesson: if you appreciate an Autistic person, make sure to let them know.  Take the emotional risk.  Tell them that they’re wanted and liked or loved.  You might embarrass them, sure.  But you will also be engaging in clear communication that lets them know they are wanted and should stick around.

Avoidance of activities (whether professional or personal) that would require significant contact with others due to fear of rejection or criticism.

I just quit a job last week.  I won’t pretend it was the greatest job ever.  It was a job that claimed to pay $8.10 an hour and, technically, did.  But it had such a draconian break policy that the realistic pay for the time I was required to be at their place of business in order to get my work done was more like $4.05 to $5.40 per hour.

But even with that, I needed that job.  Four bucks an hour ain’t much, but money is money and I’m a little bit addicted to eating. So is my cat.

But the bullying was so crushing, I had to leave before the bullies stripped me of the shreds of self-preservation I had left.

The ringleader set me up so perfectly.  He started out being very interested in what I had to say.  He encouraged me to talk more.  He found opportunities to get me alone to encourage me to open up even further, one-on-one.  He showed interest in my writing and even started reading my book. He had gotten five chapters into it by the time I left.

I came to be deeply emotionally invested in him and his circle of friends. And then one day, when the hooks were good and set in me, he turned on me.  He shouted at me. He called me names.  And his friends began to perform live theater in front of me — imitating me, my movements, my way of talking, my favorite subjects.  But all of it embarrassingly exaggerated, grotesque, and insulting.

I couldn’t even walk through the hall at work without getting waylaid and berated.  I started hiding in my car, missing hours.  I was falling behind in my hours and the boss said I had to make them up. I would have had to live at work all day long to make up those hours but the C-PTSD from all the years of bullying in school had kicked in at full force and my bullies started making a point of surrounding me. We could sit wherever we wanted in the workroom and I would quickly become surrounded by my bullies who would stare at me while they talked to each other and laughed.

I know it doesn’t sound like much.  But try it some time.  Life gets pretty grim when the only people you are ever in contact with are so clearly targeting you. I was becoming suicidal.  I couldn’t possibly make up those lost hours. In a last ditch effort to save my life, I quit.

Significant contact with others is not viable for me.  I have to meter my contact with people.  It doesn’t take long before they realize I’m only there to be their punching bag.  Places I can’t retreat, places I can’t hide — these are dangerous places full of bullies I can’t escape.

Takeaway lesson: If you know an Autistic who doesn’t want to go someplace, take them seriously.  Investigate.  Empathize.  Don’t just decide they’re being lazy or willful.  There’s a good chance they’re being damaged by that place and what happens there. Don’t jump to automatically contribute to the damage by forcing them to be there.  Find out what’s wrong.

Unwillingness to try new things due to shyness or feelings of inadequacy, particularly in social situations.

My feelings of inadequacy in social situations are very real.  I am not suffering Avoidant Personality Disorder – I am suffering humanity. People are cruelly unforgiving of those who cannot figure out the social rules and conform to them.  People are exploitative of those who struggle to conform to the social rules and thus are easy dupes for con artists.

Yes, I am unwilling to try new things, so long as there are people involved with those things.

I saw a pair of roller skates I really like and would get if I had income, but I don’t want to skate with other people.  I would love to spend more time hiking on trails but only if I can go alone. I love camping but I don’t want to camp with others.  I’m interested in trying new kinds of writing, new art techniques.  I’d like to play new musical instruments. I love learning languages but am limited in how far I can go because I don’t actually want to have a conversation in any language.

I am always open to the new experience …. but only if I can do it alone, without observers, without companions, without bullies.

Takeaway lesson:  if you know someone Autistic who doesn’t want to try something new, don’t assume it’s “just the autism.”  There could be other reasons.  You might be the reason. If you didn’t react well the last times they tried new things, they might not want to try more new things …. when you are around.

Sensitivity to criticism, rejection, or disapproval.

Tell me what “sensitivity”  means?  Am I sensitive when I have been wounded again and again until I spend all my energy trying to spot the landmines and skirt around them?  Is a soldier sensitive to Claymore mines? Is it right to call me sensitive after five decades of walking a never-ending social minefield?

Difficulty with building intimate relationships because of fears and insecurities.

I don’t trust anyone.  How could I possibly build a close friendship or relationship when those connections are based on mutual trust and I have long since run out of trust?

I watched 13 Reasons Why and I could understand why Hannah became so guarded.   After enough abuse had been heaped on her, she could never have dated Clay because she had lost the ability to trust that anyone could possibly like her and want to be with her just because she was a great person.  Everyone abused and exploited her and then sneered at her as a “drama queen”  when it was their treatment that had caused her to become so distressed in the first place.

This is what we do to victims of bullies.  We look at the depressed, broken shells they have become and we blame them for it, telling them that their brokenness is why they are bullied.

It’s like telling someone that they just need to stop bleeding and the sharks will ignore them.  But it was the sharks that bit them in the first place and they will never stop their feeding frenzy until they have devoured all the blood.  Bullies devour their victims and they aren’t even courteous enough to swallow them whole.  They tear pieces off them.  And more pieces.  And then they get excited when they see the emotional blood leaking from the wounds and bite larger and larger chunks, hypnotized by their own power to destroy another human being.

Is anyone surprised at difficulty with building intimate relationships after one’s being has been shredded by the shark teeth of constant bullying?  What about the fears and insecurities that are real? How much does cognitive behavioral therapy repair a person who is afraid of and insecure about something that has been happening every time they are around people ever?  How much therapy does it take to erase fifty years of bullying?

Feelings of being socially inept, inferior, or unappealing to others. As a result, there are tendencies to have extremely low self-esteem.

I wonder about this.  Self-esteem, that is.

All my life, I have been told that I have low self-esteem.  I can see why people would say that.  I don’t “put myself out there.”  I look at the ground when I walk (Partly because I don’t want to accidentally make eye contact with anyone but just as much because I need to see the ground.  I have bad balance and low proprioception.  If I can’t see the ground when I walk, I fall and hurt myself.)

Does it sound like low self-esteem when I say I am pathetic at making and keeping friends?  Is it still low self-esteem when it’s the truth?

Does it sound like low self-esteem when I say that there just aren’t enough accommodations to make it possible for me to keep a job (I was kind of doing okay at the last really crappy and underpaid job until everyone decided to team up to make my life hell for their amusement) and that I struggle with poverty as a result?  Is it low self-esteem when the truth is that my multiple disabilities get in the way and I really can’t support myself financially?

I don’t actually think I have low self-esteem.  I am not happy with my body (who is?) but I know there is hope that I will be able to afford medical transition some day and I can finally feel at peace in my skin.  But I also know I am more than just my body and I love the way I solve problems and puzzles.  I love my musical talents.  I’m still learning to draw, but I’m very proud of how quickly I’ve learned and how fast I ‘m progressing.  I am proud of my writing skill and pleased to see that skill improving all the time.  I am a compassionate, empathetic, kind-hearted person.  When I am not depressed by poverty and bullying, I know that I matter.  I help people all the time.  My heart is filled with love.  I feel at home in nature.  I am a good person.

If I really am socially inept and unappealing to others (except as an amusing punching bag), is it fair to call my reaction of despair “low self-esteem”?  It sounds like the problem is being centered in me rather than in the people who go out of their way to make my life as miserable as they can get away with.

Takeaway lesson:  telling someone about their “low self-esteem” that only cropped up as a result of being mistreated by others is just another way to blame the victim for suffering someone else caused.

Yes, I am avoidant.

No, it is not a personality disorder.

It is a matter of survival.

The recent bullying is so fresh that it took me four hours of sitting in my car in the McDonald’s parking lot yesterday to finally overcome my physical exhaustion and go inside to get some electricity for my battery and get a little work done.

Avoiding is the tip of the iceberg.  Being avoidant is debilitating and not always for the reasons you might assume.  I am so tired all the time.  I am worn out from carrying the burden of bullying all the time.  I am exhausted.  There is so much I want to do — I have long lists of things I’m excited to write, draw, record.  But I’m running out of steam.  Survival is too hard.  It’s ground me down.  I’m wearing out.

The price of permitting bullying to continue is unreasonable — at least for me.  Maybe it’s because the rest of the world doesn’t have to pay my price — and because they have no idea what I would put into the world if I just had a little more energy — that they don’t care much about stopping bullies.

You can do your part, though.  Stand up against bullying.  If you can do it without making too much of a target of yourself, speak up when you see bullying.  You might have to watch for it, though.  Bullying is all around you and you don’t see it.

In high school I was so bullied that classmates put sexual statements about me in the school newspaper.  “That couldn’t be true,”  my mother said. “It was a good school.  They wouldn’t have let that happen.”

But they did it in code.  That’s how they got away with it.  People are being bullied all around you and you don’t even see it!

They started by telling me they knew I was selling sex. (Good grief! I was 13 years old!) and that they heard I did it under a bridge on Dixie Highway.  (What bridge? There is no bridge on Dixie Highway.  They picked that road because it was on the south side of town where I lived and they had already spent months tormenting me about living on the poor side of town and wearing crappy clothes.  Making this alleged sex selling take place under a bridge on Dixie Highway was just a way to fold their poverty shaming in with their sex shaming.)

So when the school newspaper had a gossip column and the gossip column said, “and which seventh grader was spotted under the Dixie Highway bridge last Friday night?” it was crystal clear to me and my bullies what had just happened — I couldn’t even read the damned school newspaper without being jabbed by my bullies.  But it was completely invisible to faculty and parents.

Bullying goes on right under your nose all the time.  It’s impossible to stop it.

But I hope you’ll try anyway.

It’s too late for me.  But there are children being shredded by the shark teeth right now.  Don’t let them grow up to be people who can’t even go to work because the shark bites never healed and run so deep that they bleed all the time, continuing to attract more sharks all the time.

Don’t feed the sharks.  Take their food away from them.  And don’t blame the victims of shark attacks by telling them they smell like sharkbait.

The Lifehack article says:

“The cause of Avoidant Personality Disorder is still undiscovered, but scientists believe that it may stem from genetics or as a result of childhood environments, such as experiencing emotional neglect from parents or peers.”

So maybe I do have Avoidant Personality Disorder after all.  Maybe I’m just incredibly resilient and it took decades of bullying and emotional neglect to create Avoidant Personality Disorder in me whereas most people develop it after only a few years of the same.

It should be a crime.  And the whole damned world is guilty.

So why is it me that has to live in the prison they created with their mockery and hatred? Why am I the one being punished for everyone else’s lack of …. well, I was going to say lack of humanity, but since they all behave this way I guess bullying is definitionally an act of humanity.  It seems to be me who is not part of the fold.

I don’t have any answers to that.

But from my prison I will continue to send out love letters and lifelines of hope and poetic writing for others to catch hold of like a rope tossed from an extreme place.  Sure, the bullies will catch hold of that rope and jerk on it.  They always do.  They won’t ever stop.  But my words will sail over their heads at the same time, floating out to the world where they will offer those with the shark tooth shaped scars on their spirit the healing balm of knowing someone else sees, someone else knows, someone else understands.  I know what the sharks can do and I offer you the only thing I have: my words.

And this is what I say to you who are circled by sharks: escape. Find a break in the wall of sharks and swim through as quickly as you can.  Don’t look back.  Stay one stroke ahead of the sharks and there is good life to be found in the water. Don’t sink.  Don’t drown.  Keep swimming.

Do not let the sharks decide what you are worth and what you get to do.

Okay, I know that, to some degree, they do and will.  The sharks own this world.

But there are stretches of clear blue water on smooth seas filled with playful dolphins and swaying anemones.  Find them.  Strike out and find your safe waters and own them.

And I’ll keep swimming too.

 

 

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.

How We Teach Disabled People to Secretly Hate Themselves

This is a re-blog of a post originally made on February 26, 2016.

This blog post has been graciously translated into Russian by Neurodiversity in Russia.


self-doubt

image description: a silhouette of an agitated looking person, surrounded by words of negativity and self-doubt, such as “deficiency,” “disrespect, ” “disconnection,” “weakness,” “rejection,” “abandonment,” “inadequacy,” and so on. Mixed in with these words is the word, “disability,” which does not deserve to be connected to words like humiliation, instability, inadequacy, and insignificance but still gets slipped into the mix unquestioned because society’s ableism is so deeply ingrained in our cultural views that it is virtually invisible.

It’s a fancy academic-sounding term: internalized ableism. It means feeling less worthy than others, ashamed of who you are, unwilling to stand up for what you deserve, or even hating yourself. And it’s so culturally supported by society that many people (including myself) can play host to ableist self-deprecation or self-loathing for years without even realizing it.

I have been working on my own internalized ableism for years and still keep finding pockets of invisible ableism in myself. Let me put that in more blunt terms: after years of working on loving and accepting myself, I still find entire areas of my life in which I have held myself back unnecessarily due to feeling unworthy on a fundamental level.

I’d like to share with you some of what I wrote on my private Facebook wall this week, to help you understand how damaging internalized ableism has been in my own life:

-=-=-=-

When my daughter died, there was a small voice inside me that said, “it might be for the best. You are poor. You are disabled. What kind of life could you have given her? There is a reason so many people in your life put pressure on you to abort her. Maybe keeping her was selfish. Maybe it’s better that she didn’t live. What right did you have to try to bring life into this world anyway?”

This is the first time I have fully admitted those thoughts in public. I tried once. I went to a meeting of Compassionate Friends, a support group for people whose children have died. I got the first sentence out, “I was thinking maybe it was for the best that she died…” When I was interrupted by the meeting leader.

He was angry. He shouted at me. He asked me if it was for the best that another member’s child had died in a fire, that one was murdered, that one had died from cancer, that one had been hit by a car. He shouted and shouted and there was no room for me to shout back, “I wasn’t talking about your children! I was talking about me and what a horrible mother I would have been. Maybe it was for the best because no one should have to have a mother like me!”

But I didn’t shout back. I cried. And I ran from the room. And I fell down in the parking lot because I was crying too hard to see. I banged myself up pretty bad, but it didn’t hurt. I was already hurting too much to feel it.

And here I sit, almost 22 years later. In the intervening years, I told myself that I didn’t really want her. I told myself that I didn’t want a child, that I loved my freedom too much to give it up. I reminded myself of all the sacrifices parents make for their children and how expensive children are. How expensive and noisy and messy and heart-breaking.

I congratulated myself for dodging a bullet and reminded myself how grateful I am to be unencumbered and not responsible for another human being’s well-being. And life. And suffering. Because if I had a child, they would just grow up to hate me for all my shortcomings anyway. They would hate me for bringing them up in poverty. And they would be ashamed of my disability. And I would be burdensome to them. And, knowing my genetics, they would hate me for the disabilities they were born with because I was too selfish to just not reproduce.

And the truth is that I mourn her every day. And the truth is that I mourn not becoming a parent. And the truth is that I watch my ovarian clock tick, tick, tick, seeing time running out and knowing there is never a “good” or “right” time to have a child, but that all the best times are behind me and I would be a fool to have a child now, at almost fifty years old, in poverty, living in a vehicle, only just barely starting to build a career, finally, after a lifetime of false starts and shredded dreams.

And I wish I had the courage and opportunity to be that fool.

And I know I won’t. Because I’m too scared, too poor, too disabled. And I would be a horrible mother. And my child would grow to hate me.

But I beg of anyone reading this, I beg of the world: there are younger people out there who would like to have a family but are being held back because they are disabled and people in their lives have taught them that they shouldn’t have children, that it would be wrong, that they can’t do it. Do not leave those young people to end up in twenty or thirty years where I am, wishing they could turn back the clock and have another chance.

No parents raise their children alone. All parents have a support system comprised of some combination of friends, family, government, society. Disabled parents need support as they raise their children. All parents need support as they raise their children. I wish I had not been so ashamed of my poverty and disability that I let life slip by without holding my own, living, growing child in my arms and doing what all parents do: loving them and raising them as well as I possibly could.

Life’s own longing for itself. I missed my chance to fulfill it.

Don’t let that happen to today’s young, hopeful, disabled, would-be parents.

-=-=-=-

Feeling unworthy to have a family and raise a child is only one example of internalized ableism. People with internalized ableism can subconsciously (or consciously) sabotage their chances for a better education or a better job because they feel unworthy. They describe themselves using medical language of pathology because they were brought up to refer to their minds and bodies with words of lack and brokenness only.

Some forms of internalized ableism superficially resemble high self-esteem until you scratch the surface. I meet people who refer to themselves as “high functioning,” which might seem like a self-esteem phrase until you look a layer deeper and see the fear of being mistaken for “one of those.” When ableism is levelled against other people with your same disability but different support needs, it is a sign of internalized ableism as well. Those who truly accept themselves as they are have no need to punch down – whether directly or indirectly – against those with the same disability. Accepting yourself means accepting others who are like you, not fighting to distance yourself from those who resemble you in some way.

I see people recoiling from the word “disabled,” as if it were a great insult. You are fighting the wrong demons. Instead of fighting against the valuable and useful word “disabled,” please fight against the underlying ableism that causes you to recoil in horror from the word, “disabled.” Instead, do something pro-active to make the lives of disabled people better, happier, and more just. When you try to hide from the word “disabled,” you are only increasing the sum total of ableism in the world and that is what will truly hold you or your child back in life. Sadly, internalized ableism has held me back from so many things I wanted from life. It is a great injustice to allow rampant, half-hidden ableism to squash even one more dream. Root out ableism, both in society and within yourself, and let’s stamp it out forever.

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.

=========

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.

Autistics Are at Greater Risk of Trauma

Wolf Lake

[image description: a photo of Wolf Lake in Sebring, Florida, taken by Sparrow Rose Jones. It has nothing to do with either autism or trauma, but it’s pretty and the author enjoys including an image with their writing.]


I am at the 2016 Association for Autistic Community (AAC) conference. During Kit Mead’s excellent presentation, Autism, Awareness Campaigns, and the Mental Health System (slides), several people mentioned the need for research supporting the idea that Autistics might be more easily traumatized. I mentioned that there has been a small amount of research in that area and others were eager to know more. Since multiple people wanted that information, I decided to make a brief annotated bibliography in a blog post to more easily share it with as many people as would like to see.

As you might imagine, the bulk of the available research (and there isn’t a lot of it yet — I definitely agree that we need more research into multiple aspects of autism and trauma) focuses on the role of the amygdala in stress and trauma imprinting. There are two main aspects of showing an autistic predisposition for trauma: showing the role of the amygdala in sustaining trauma, and showing the ways that the autistic amygdala is different in structure and/or function, thus exacerbating that brain structure’s role in trauma. Some of the following research is of one type or the other, much addresses both halves of the equation.

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Some assessments of the amygdala role in suprahypothalamic neuroendocrine regulation: a minireview

This article has little to do with autism specifically. I am including it in this annotated bibliography because it does a good job of explaining the role of the amygdala for those who don’t have a neuroscience background and thus may not instantly know why the amygdala is important in considering the autistic risk for trauma. As the abstract says, “The amygdala plays a key role in what has been called the “general-purpose defense response control network” and reacts in response to unpleasant sights, sensations, or smells. Anger, avoidance, and defensiveness are emotions activated largely by the amygdala.”

The Basolateral Amygdala c-Aminobutyric Acidergic System in Health and Disease

This research review article from 2016 is the main “smoking gun” I was referring to when I mentioned that there has been some research already that has found a higher risk of trauma among Autistics.

“This Review discusses the anatomy, development, and physiology of the GABAergic system in the BLA and circuits that modulate GABAergic inhibition, including the dopaminergic, serotonergic, noradrenergic, and cholinergic systems.” That’s a lot for those of us who are not biochemists, but I’m going to try to boil it down a little bit. The article says that Autistics, along with a few other categories of neurodivergents (Alzheimer’s, TBI, epilepsy) have hyperexcitability in our amygdala. That means the neurons in our amygdalas are firing much more often than neurons in the amygdalas of the general population and that this increased amygdala function leads to anxiety and “the development of neurological and/or neuropsychiatric diseases.”

In Autistics, GABA metabolism is reduced and certain GABA receptors are delayed in their maturation. The authors point out that a reduction in GABA-mediated synaptic inhibition (a reduction in ‘less neurons firing because GABA “calms them down”‘) is linked to an increase in anxiety. The hyperactivity of the amygdala not only increases anxiety but greatly increases the risk of developing PTSD. The review goes on to say that benzodiazepines (which are commonly given to people experiencing anxiety and/or PTSD) may not be effective in Autistics because their mode of action relies on the same GABA receptors that take longer to develop in Autistic people than in the general population.

The authors are careful to point out that they are not arguing that hyperactivity in the amygdala results in PTSD but simply to point out the role of GABA in PTSD and the action (or lower action, as it were) of GABA in the autistic brain creates an environment more likely to result in PTSD and other anxiety disorders. They suggest the need for research into deeper understanding of the role of GABA and the possibility of developing therapies that increase the growth of interneurons that could reduce the excitation of neurons in the amygdala.

The Result of Traumatizing Events on a Child With Autism

Although the 2016 GABA review is new, knowledge of the role of the amygdala in autistic trauma has been around for a while. This is a 2008 statement by Dr. David Larson Holmes who, unfortunately, does not include citations when he writes, “Recent studies have confirmed that children with autism have very active Amygdalas; the center of the brain that stores traumatic events. This center is directly connected to the brain stem [reticular formation] which is the area of the brain stimulated during potentially threatening conditions and places the child in a ‘fight or flight’ condition. […] Upon further analysis of the brain activity of children with autism it has been found that the Hippocampus, the center of the brain which stores pleasant experiences, is actually much less active than the children’s Amygdalas. This has resulted in a supposition that children with autism are affected more from traumatizing events than pleasant events and that the traumatizing events have greater robustness; thereby maintaining a greater degree of panic and fear in the child than what would be found in typically developing children.”

Amygdala and Hippocampus Enlargement During Adolescence in Autism

Strictly speaking, this 2010 study doesn’t indicate anything about increased risk of trauma. I’m including it because it’s an example of a structural difference in the amygdala between Autistics and the general population. The authors are unsure whether the increase in the size of brain structures causes emotional differences or whether the “increased emotional learning” Autistics go through when compared to the general population is the cause of the structural changes.

Amygdala Subregional Structure and Intrinsic Functional Connectivity Predicts Individual Differences in Anxiety During Early Childhood

This article is not about autism or Autistics, although the lead researcher, Vinod Menon, has conducted other research that does focus on Autistics. This 2013 paper ties in with the uncited claims above of Dr. Holmes, as well as the 2010 study directly above about amygdala size increases in Autistics during adolescence (an emotionally difficult time for nearly anyone of any neurological profile.)

The study found that the larger the amygdala, and the more connectivity between the amygdala and other neurological structures, the higher the anxiety rate in children and the greater the risk of anxiety disorders developing later. In addition to the human study upon which this article was based, “Studies of laboratory animals placed in an environment causing chronic stress have determined that the animals’ amygdalae grew additional synapses and that synaptic connectivity increased in response to the resulting persistent anxiety.” This suggests that what the authors of the 2010 study were calling “increased emotional learning” in adolescence was actually a burden of chronic stress and anxiety, causing the amygdala to grow larger than non-autistic controls.

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All of this information is pieced together and none of it is so clear cut as the 2016 GABA minireview, but taken together, they paint a strong portrait of the greater trauma risk Autistics face and the great need for further research into the nature and causes of trauma in Autistics.

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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