Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Tag: emotional damage

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.

 

 

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:

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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.

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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.

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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