Archive for the ‘autism’ Category

It’s MY Blue   19 comments

Blue is the color of my joy. I feel emotions as colors and colors as emotion. Blue is comfort. It is energy without overwhelm. I studied color theory, but it failed to capture my autistic experience. For some things there are no words.

When I was a child I had a daydream. I kept it secret, because I was not supposed to want things, much less grand, beautiful things. I would pull out my 1972 World Book Encyclopedia and look for all the pictures of great landmarks such as the Empire State Building, the Pyramid of Giza, and the Sydney Opera House. Then I would imagine them bathed in vibrant blue light…

There is a progression to my relationship with me.
I was a child, and I hated myself. I was inherently broken yet morally obligated to prove otherwise. I was resented. I was a cross to bear. I was unredeemable. I wished for death, and I was not alone in that wish. Saintly grieving for a child lost was preferable to the day to day of me in all my sickly, time consuming, autistic glory.
But neither of us got our wish.
For all my brushes with death, my body would not die and my brain would not stop grasping for existential justification.

I became a parent, and unconditional love poured out of me. These vulnerable humans were so much their own selves, yet so much like me. They became my justification. Death, while still a possibility, ceased to be a viable choice. I mattered. I still wasn’t a real person, but I filled the needs of real people. The self loathing that previously propelled me forward subsided replaced by this new purpose.

A few years ago, my entire mindset shifted. I am human. I deserve to live, not because I am of use to someone, but because I am alive. I have inherent dignity. I need no justification. It’s disingenuous to say I love or even like myself, but I’m learning.

However, there is a price. The more I accept myself, the angrier I get. The more it hurts. The more I want back the things that were stolen from me like access to education, freedom of movement, control over my own body, and the right to joy. I wrest back what I can.

Which brings me to World Autism Awareness Day, an international effort spearheaded by Autism Speaks, and Light it up Blue. They made this thing that existed only in my mind, this most special childhood fantasy, real, then used it to kick me in the teeth. All over the world people join together in this colossal effort, ignited by a purpose:

To bring about a day where people like me cease to be born.
To spread a message of fear and panic that places me, and others like me, in real danger.

Autism Speaks, you are big and powerful. So far, your Awareness has managed to spread enough fear and misconceptions to make me a pariah in my own neighborhood. You have corrupted the mental refuge that sustained me through untold abuses with your World Autism Awareness Day. But you do not speak for me, and you can not steal my joy.

You can’t have my blue. It’s mine. You can use it for your puzzle pieces, sick little symbols of autism as an affliction, autism as a boys’ club, autism as a thief of humanity. It’s still not yours because you’re using it wrong.

It’s MY blue, so fuck you.
I will keep my joy.

Pale blue squishy chick stim toy with nubby feathers and orange claws.

non strobing squishy stim toy

iPad in blue padded case with handle.

My tablet

Blue folder underneath a blue mini stapler, blue handled scissors, and a blue and black Venom action figure.

office essentials

Blue noise canceling ear muffs on top of a closed laptop.

ear muffs

Blue mousepad on a black table. A black mouse sits atop the mousepad, and a red glasses case sits to the right.


Sideways notebook with a list of Activities for Daily Living. Those notes are partially covered by a blue pen and an upside down checkbook.

ADL notes to self

Black stim toy with hundreds of little blue  'needles' conforming to the shape of  the hand of the woman holding the toy.

even more stim toys

Stuffed fabric elephant statue with cross hatched blue, black, and grey stripes. Elephant is standing on a carved wood elephant plant stand.

present from my boys for last month’s birthday

A 'cloud blue' storage shed with brown shingled roof. A rotary clothesline is in front and to the left of the shed.

freshly painted barn

out to lunch

out to lunch

Close up photo showing only the bright blue eyes eyes of young child. Blonde hair falls over part of the left eye.

extreme closeup grandchild selfie


Judgement and Fear (#StopCombattingMe)   10 comments

Every day involves a calculation. I walk in a world that sees me as broken, less than. Whether I like it or not, the world is more dangerous for me because I have a developmental disability. When the public discourse is full of words like combat and warrior, and the real results of that discourse are poverty, abuse, discrimination, and institutions, we need to be prepared for battle. It’s not that we’re hostile or unreasonably angry, but the consequence of letting down our guard is too high. So we armor up. We pile on the pieces of objective truth as dictated by an able world. We are quick to mention, repeatedly, our degrees and career accomplishments in a way that is often mistaken for bragging. Rarely is this a prideful act. It’s a Faustian bid rife with internalized ableism. I can show you my credentials, so that you will give weight to my thoughts. I can’t help but notice amongst my educated able friends, they often don’t even know what degrees if any their friends and coworkers have earned because they value each other’s thoughts without question. No cognitive litmus tests are prerequisite.

This is not to say my degreed friends have pursued higher education in order to separate themselves from their disabled comrades. They deserve to not have the purity of their pursuits diluted by pressure to prove their worth. This is an unfair compromise imposed by an able world. No one should have to prove they are not like ‘those others’ in order to stand up and say I am just like those others.

For those of us, myself included, who lack the tools, supports, and serendipitous fortune to have careers or degrees, armor is harder to come by. We need to matter to someone or to fill a need lest our freedom crumble in front of us. We must remain hyper vigilant. We learn the danger signs, the buzz words. We gauge every interaction based on an algorithm of mistrust. There is a crushing emotional and physical toll of this state of alert, but the cost of letting our guard down is worse.

A few days ago , I watched a valued member of the disability community defend use of the word stupid. Many people did not agree with him, and as I started to join those who wished to express their disagreement, I saw two words that stopped me in my tracks.
Right there, in all caps, in comment after comment, he insisted the word stupid could simply mean POOR JUDGEMENT. He was right, one definition of stupid is poor judgement, but that does nothing to lessen the word’s impact. There is nothing simple about the phrase POOR JUDGEMENT.

For those of you who have the luxury of not being viewed as the owners of defective brains, poor judgement is a transitory event. For the rest of us, it’s an identifying factor. For you, a mistake is an anomaly. For us, it’s evidence of our incompetence.

I have been conditioned by years of experience to associate the word JUDGEMENT with danger. If I didn’t, I’d be dead. Not metaphor dead, not hyperbole dead, real dead.

People with power, doctors, psychiatrists, social workers, and the like, know better than to say the words retard or even stupid so they use the dog whistle of judgement, and just like a real dog whistle, my reaction is immediate and intense. Because I know judgement is the word they use
when they lock us in psychiatric facilities
when they deem our rapes too murky to prosecute
when they take our money and our independence
when they try to take away our children
when they deny us critical medical care, or force us to receive that care only in return for being treated like a side show attraction

While I only describe my own experiences, there is nothing particularly unique about them. These words are still too dangerous to me. I do not have the luxury at this juncture to reclaim them.

I cannot tell you what words to use. I will not police your speech. I lack both the power and inclination to do so. However, I need you to know these words are not just words to me. I can not idly stand by and assume best intentions. That may well be the kindest course, but it is also the most dangerous assumption.

Posted March 9, 2014 by itsbridgetsword in autism

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Love Not Fear   9 comments

What follows is my contribution to #BoycottAutismSpeaks flash blog, #LoveNotFear. It is sparse. I wanted it to be more because I believe in this effort. I believe the rhetoric of tragedy and the push to fix what is not broken hurts the connection between children and their parents, and that breaks my heart.
However, I could not bring myself to write of how my life has changed so dramatically in the last four years. It is a beautiful thing, but some stories are not ready to be told.

I am safe now. I am safe.
Some days, I need to remind myself over and over. It becomes a mantra. I have to remind myself.
Some days I forget. Some days I just cannot believe.
Fear kept me alive for the over forty years I lived as a disposable human.

The fiction that I was less than human crumbled when I was faced with my own neurodiverse children. They are wonders. They are art. They are so fully human that it fills me with awe and sets my heart on fire. I never felt fear or disappointment in their deviance from some mythic norm. They are precisely as they should be. Yet, I see myself in them, and for forty plus years, I heard nothing but how I am damaged, defective, less than. I could not apply the corollary to these loves of mine. I have always, and will always love, accept, and treasure exactly who they are. I could live no other way, even in the absence of anyone who loved and accepted me. Love outweighed my life experience.

Posted February 13, 2014 by itsbridgetsword in autism, autistic families

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What I Cannot Change   Leave a comment

This time is difficult for me.
It roars
with ghosts
that I am not allowed
To mourn

Posted January 27, 2014 by itsbridgetsword in autism, autistic families, depression

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Always a Girl, part two (Guest post at NeuroQueer)   1 comment

Three completely unrelated facts:
I am autistic.
I am queer.
I was consistently misgendered as a child.

Growing up, these three facts were treated as one pathological whole. Girls are soft and warm. They communicate with others. They show affection easily. If only they could make me more feminine, the rest would fall into place. Meltdowns were viewed as acts of aggression; violent masculine behavior. Surely if they could not curtail the masculine behavior it would irreparably damage my development…(read more)

Posted January 9, 2014 by itsbridgetsword in autism, autistic families, lgbtq

For Issy   8 comments


I am sorry.
I want desperately to undo what has been done to you, and I can’t. I simply can’t. If you were one of my children, I would fold you in my arms and let you know you are a treasure. You matter just as you are. Not some trained, controlled, acceptable incarnation of you, but you in all your glorious, messy beauty. You deserve love and acceptance. It breaks my heart that you didn’t get that.

You deserve quiet, peace, and privacy. You deserve room to grow and a safe space in which to do so. I am sorry you didn’t have that space. I didn’t either. I did what I needed to survive, and I broke over and over again. My adolescence was a string of Faustian bargains, and I stumbled into adulthood yoked to some skewed culpability manufactured by the very people who forced me into those circumstances.

I grew up in a different time. There is no record of the events of my past, and I owe it to no one to dredge them up and justify my actions. All my supposed sins are my own. I can hold them close to me. I can guard my secrets, not out of shame, but out of love for my self.

I am sorry your pain was turned into a public spectacle. Do not feel shame. Do not be embarrassed. You are not to blame. There is a community out here waiting to fold our arms around you.

Because you are a treasure.

Posted September 7, 2013 by itsbridgetsword in autism, autistic families

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Gift   13 comments

I should not need to explain myself, but I do. Over and over and over again because there is always someone out there who is certain they know me better than I know myself. When I have the option, I will choose when or if I use verbal speech, and my reasons are my own and valid. I am not obligated to be verbal just because it would make you more comfortable.

If I am using my few minutes of verbal speech with you, I am offering you something limited and precious. I have carved out a section of my physical health and peace of mind and given it to you like a pretty slice of birthday cake.

How long do most of my interactions with people take?
Three minutes in a drive thru,
Five minutes at the grocery checkout,
Ten minutes of social gathering small talk,
Fifteen minutes for a neighbor to borrow some sugar…


In my verbal marathon, at fifteen minutes I hit the wall. I can try to push past that, but there’s no guarantee I’ll finish the race. I am no longer running on solid ground. After fifteen minutes, maintaining verbal speech is like running on a tightrope. It wobbles. The margin for error is imperceptibly tiny. If I falter, the only option is catastrophic failure.

At best, I can walk this tightrope for the next twenty to forty minutes. These are the minutes when I stammer and rub my arms raw. These are the minutes when I say words that are not what I mean. These are the minutes I am locked in decades old scripts that do not allow for dissent or self preservation. In my head, past abusers bubble up to my consciousness screaming my failures, derailing my thoughts. These are my wounded animal minutes. I will accept almost anything, or lash out instinctively.

I cannot make it past those forty minutes. No amount of trying, wishing, or believing in myself changes that fact.

Forty minutes is just enough time to spend a life surfing the gap. I tried to make it in the work force, and it almost killed me. Not in an I’m miserable and want a good cry, a glass of wine, and ice cream sense (although that counts), but in a high blood pressure induced daily multiple blackouts and increased seizure rate sense. I have too little work experience to qualify for Social Security when I’m sixty-seven, but I am not able to qualify for SSI. If I honestly portray my abilities and limitations, I leave my children vulnerable to intervention by child protective services because disability in this state is still legal grounds for child removal irrespective of any other factor.
Most of my forty minute dog and pony shows are to keep judgement off my parenting. This is simply an extra responsibility required when parenting while disabled. There stands my line. I will not sacrifice my children at the alter of any cause no matter how just or righteous. What Should Be will not protect them, and my primary obligation is to their well being.

Posted August 2, 2013 by itsbridgetsword in autism, autistic families, Uncategorized

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There Will Never Be Another You   20 comments

My father’s older brother was a quiet, brilliant man. My uncle was a slight built man with darting eyes that rarely met another’s gaze. His hands seemed like new tools he hadn’t quite mastered. They would shake as he lit a cigarette. They would fumble as he put together his clarinet, but once he had it assembled, with those long thin fingers in place, he was seamless. That clarinet was an extension of those hands, and it was perfection.

My uncle spent most of his time in a small garage apartment where he could read, make music, or sit amongst the gardenias and watch the squirrels play. It was his refuge, and he let few people inside. In the summer, he would often ride his bike to my grandmother’s house, but after a few minutes of trying to answer a bombardment of her questions over the din of the television he would become cranky and flustered, and we would walk back to his place. There, we could sit for hours listening to Stan Kenton or Chet Baker and blissfully not utter a single word. He was not like other adults. He was like me.

My father was charming. He had a quick wit, and an encyclopedic knowledge about darn near anything. He had a fearsome, exacting moral compass all his own. Integrity was everything to my father. People liked him. He did well out in the wider world, and he hated every minute of it. He hated the noise. He hated the groupthink. He hated the constant inane chatter. As intensely as he loved the human race and all the amazing things it was capable of, he could not tolerate being amongst his fellow humans and all the horrible things they were capable of. Much to my mother’s dismay, he refused to socialize. His tolerance for human interaction was only enough to tolerate his workday. My father would leave the house each morning with a palpable sense of dread, and come home each night exhausted. He would keep up this cycle until he could not, and then he would quit yet another job without warning, usually over an issue he saw as black and white but about which his former employer clearly disagreed. In between jobs, he drank.

My mother was a people person. Everyone liked my mother. She understood what people expected of her, and she never let them down. My mother was a self made woman. She never needed help or accommodation. She had the same game plan for all arenas; work, church, friends. Start at the bottom, do more than your share, keep your head down, and make people happy. This plan worked everywhere. No matter where my mother was, it wasn’t long before she was in charge.

Much to her dismay, none of this carried over to her home life. My mother was at a loss in how to deal with us. She was bewildered as to how people so intelligent were so incapable of success. She was crushed by the unfair hand she was dealt. She had played by the rules, and in return got a husband who could not support her, and a child who could not interact with peers, was constantly ill, and scared away babysitters. She found solace in the Bible, often describing raising me as her own personal trials of Job. By the time I was twelve, my mother had given up on us. She stayed because nice women simply did not leave their families, but she had lost all interest in trying to fix me. Her focus became her career and the relationships she formed in the workplace.

My mother’s detachment created some problems for me. My father had been between jobs for nearly a year. He was drinking liters of vodka a day resulting in auditory hallucinations; voices that told him I was an immediate threat to his safety. I was often forced to leave home for a few days until the situation calmed down. Whatever explanation my father gave my mother for my numerous absences, it must have been completely plausible. Any alternate explanation is simply too painful to entertain. I got by relatively unscathed. I looked many years older than I was, so it was easy to blend into the adult world. My grades never suffered, and I made real friendships, something I’d never accomplished among my peers in school.

In many ways my mother’s change of heart was an immense relief for me. While there were still medical interventions that I did not love, the lifelong string of psychiatrists, psychologists, hypnotherapists and the like came to an end. Ten years of strangers attempting to make me acceptable had accomplished nothing other than building a mountain of credit card debt. If I was going to find a way to make my mother proud, I’d need to figure it out for myself.

My top priority remained gaining my parents’ approval, and toward that goal, academics were my only successful outlet. In school, I was in a gifted program, which meant I spent most of my days with the same twenty-eight students for every class, twenty-six of whom shared a common background; white, wealthy children of “respected” families. They floated in a cloud of starched oxford cloth and Polo cologne. Gail and I sat firmly on the ground below that cloud, outcasts by virtue of her skin color and my neurology. No one was outwardly mean to us, but even at thirteen, the others had mastered the icy tolerance afforded obligatory tokens. Gail and I were more amused than hurt by this. Alphabetical seating kept us together, and this was not a movie where every socially awkward teen wants desperately to be part of the popular crowd.

One late spring day, there was a party invitation from Laurie on my desk when I walked into French class. Laurie was the ‘funny one’ of the very popular girls. She was snarky before snarky was a thing. She had a quick wit that stung. I’d seen girls driven to tears by her so often I lost count. Our only conversations had been her asking me for help with algebra, so I had no idea why I was invited. I assumed I would say I had other plans, and the matter would be dropped. Laurie would have met her obligation to be polite in inviting me, and I could avoid an evening of bad music and perplexing conversation. Brian, the boy every popular girl crushed on, sat down next to me and asked if I was going. I told him no, I had promised my uncle I’d spend the weekend helping him paint his apartment. Brian asked me to please reconsider. I was thoroughly perplexed but promised to think about it, and like an idiot, I kept my promise and really thought about it.

The more I thought about this party, the more I wanted to go. Not that the party itself held any appeal to me, but the concept of the party, the ability to go home and tell my mother I was going to a party with kids my own age was too enticing to pass up. I would be a teenager going to a party with other teenagers. It was my mode of operation to pick a television show or movie as a pattern for unknown social scenarios, and I decided this was Happy Days. What could be more normal than that? It took all I had when telling my mother about the party not to ask her if it made her happy that I was going, because I knew that was not what Joanie Cunningham would do.

My mother must have been pleased, because that Saturday she did not go into the office, but stayed home and ironed my shirt. I had not been able to reach my uncle to cancel our plans. He had a habit of not answering the phone, so he rarely got upset over information he didn’t receive. Mother promised if he called, she would tell him I’d be over the next weekend.

My mother dropped me off at 7:35 with plans to pick me up at nine. I knew the party ended at ten, but I also knew my limits. The party did not seem to be nearly as intolerable as I anticipated. We were outdoors, so the music was kept to a respectable level. I got a Dr. Pepper, and surveyed the landscape. I then placed myself one third distance from the center of the large patio, not so close as to be an actual participant, but not so far back as to appear aloof. My plan was to simply stand in that spot for a little over an hour, and I’d be done, but somehow, the cluster of people drifted outward, and before I knew it, I was drawn into conversing. I held my own, stutter fairly in check, when I heard Laurie say my name, “Bridget.”

“Yes?” I replied.

Slowly, savoring every word she asked, “Tell us, Bridget, is your dad still a drunk?”

While the girls tittered, I stood there frozen trying to collect myself. I had failed in my attempt at social normalcy, this had all been a colossal waste of my time, and I didn’t know how was I going to answer all my mother’s questions when she picked me up. I did not feel sad, or embarrassed, but since I had nothing to lose, I wanted to at least satisfy my curiosity.

“Why?” I wondered aloud. “What do you gain by asking me a question like that? I really want to understand.”

I startled as a hand touched my elbow. It was Brian. His voice was quiet, and angry. “Yeah, why Laurie?” He didn’t wait for a reply, but led me over to a bench. There I sat, eyes wide, watching Laurie’s party fall apart. The crowd drifted apart, divided by gender. The boys almost universally derided Laurie while the girls stood behind her, not saying anything in her defense, but unable to take the risk of going against her. I sat on that bench another half hour waiting for my ride home, while boys shuffled by with mumbled words of encouragement to insure I wasn’t sad.

I said little on the ride home, fending off questions with the very truthful excuse that I had a headache. I was weary from trying to be a part of the world and wanted the day to be over. I went straight to bed, thinking next weekend I would not spend trying to please anyone. I would go to my uncle’s, and paint, and listen to real music.

What I didn’t know was that night my uncle was also weary from trying to be a part of the world as well. They found his body that Wednesday.

Posted March 18, 2013 by itsbridgetsword in autism, autistic families, depression

No Safe Spaces   11 comments

Trigger warning: the following post contains hate speech

I needed a break. The transition to homeschooling my kids led me beyond tired into exhaustion. I needed a few days to recharge. So last week, while my husband had business in Austin, I decided to come along. I had some trepidation about a trip with other people, but I knew they would be in conference sessions all day, and besides these were guys I knew. This was a safe place.

Except, there really is no such thing as a “safe space”, and words hurt.

The words that hurt the most are the ones that go by without comment.

On the drive down, I try to relax. I need to relax. I let go of the parental hyper vigilance and breath deeply, and just as I begin to feel peace I hear one of my back seat passengers use the R word. I gulp. My blood runs cold. I scan the rear view mirror nervously. I wait for my spouse to say something. Anything. Maybe he didn’t hear, or maybe he just didn’t think about it. After all, it’s Just A Word, right? I know the man who said this is a nice guy. He would not purposely be hurtful. But that doesn’t make it hurt less. Using it as an adjective doesn’t make it hurt less either because that adjective applies an undeniable negative connotation to a word that has been assigned to many, myself included.

I hear that word, and I’m a child again…

If a=b, and a=c, then b=c.
If retarded is bad, and I am retarded, then I am bad.
I learned this simple equation early on. That word was always used in hushed tones as if to soften the horror of it all. It elicited swift, angry reactions in adults around me. I remember being pulled by an adult’s tight grip on my arm out of places so fast my legs would tangle in a vain attempt to keep up with whatever grown up was running away from that word. I remember desperately wanting to know what I did wrong so I would never, ever do it again, but being told I didn’t do anything wrong. And yet, they were all clearly upset with me. By the time I was seven or eight, I understood it wasn’t any one action I could change. I was different and wrong to a degree I couldn’t change no matter how hard I tried. This is how broken that word was forty years ago.

By the third time I hear the word in less than a three hour span, any hope of relaxing is gone. Also gone is any illusion that my spouse simply didn’t hear. I remind myself that this sort of talk is still acceptable parlance even amongst social service professionals. I’m the one who doesn’t fit. I am the other. I begin a frantic mental recalibration of the next three days. Gone is any hope of respite. Now I see three days in which I need to cobble together the best facsimile of someone I can never be. Three days which will be infinitely more exhausting than if I’d stayed home buried in laundry and grammar lessons.

By the second night, I couldn’t fake it any more. I was exhausted, stressed and had lost speech entirely. The next day at lunch, I dropped the rest of our party off at a restaurant while my husband and I searched for parking. While driving around in circles, I became increasingly upset, more than a little UT lunchtime parking warranted. I was angry and sick of feeling like a lesser human. When I asked my husband if the place we parked was safe from towing, I snapped some comment along the line of how would I know, I’m just a retard. He admitted while he was vigilant about it previously, he had been lazy about calling his staff out on the r word in his current position. All my anger and hurt spilled out as I explained to him what I thought he already knew. The word retard is just as hateful a word as nigger or faggot, yet we would never use those words in such a cavalier manner. Unless you’ve been on the receiving end of those words (generally preceded by the expletive fucking and followed by an explanation of why you don’t deserve to live) you should count yourself privileged and take the word of someone who has. I was upset with the situation and upset with him, but I was done being upset with myself for being who I am. I deserve better, and that starts with me.

Should I have spoken up? If I could have, sure, but the point of this all is that I am autistic. Verbal output is a Herculean effort for me involving a Rolodex of carefully planned out phrases tailored to fit a given situation. Think of it as auditory predictive text. It often sounds natural because of the amount of time and effort I spend thinking about all possible questions I may need to answer, and formulating set responses ahead of time. However, I am not adept at initiating conversations or interjecting myself into other people’s conversations. Verbally speaking up was outside my skill set. This post is my way of speaking up. While I understand the person I wanted to speak to may never see this, I hope someone else just like him might.

Posted November 1, 2012 by itsbridgetsword in autism

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Self Injurious Behaviors   51 comments

Self Injurious Behaviors. The magic trump card to stop down any conversation about autism. Three words loaded with emotion for anyone who loves an autistic. You want to protect the ones you love. In this case, the one you love and want to protect is also the very same person who is hurting the one you love and want to protect. It’s heartbreaking and confusing. I get that. I promise.

Self injurious behaviors (SIBs) are often cited by those who view autism as a tragedy. Their child’s autism causes him to engage in SIBs, and they would do anything to make the autism that causes their child to hurt himself for no apparent reason to go away. Personally, I have been told I am “so high functioning” I cannot possibly understand, but I do understand because I am an autistic who engages in self injurious behaviors. I’m a head banging, skin biting, hair pulling, mystery bruise getting autistic. I see SIBs from the inside out, and while I can’t vouch for other autistics, for me, the awful part of SIBs is seeing the pain it causes those who care about me. This hurts more than any physical pain. It even hurts more than the root causes that drive me to SIB in the first place.

Self injurious behaviors are not the same as self harm. I feel self harm is a much more concerning issue than SIBs because it encompasses emotional torment (although there is overlap of self harm and SIBs in some cases). If you or someone you care about is involved in self harm, I urge you to seek help

That said, I encountered years of professionals wanting to equate my SIB to self esteem issues, chiefly because of preconceived notions related to my gender. I have my frailties. I am overly sensitive and internalize criticism. I have PTSD related body image issues. My baggage has outgrown its suitcase and demanded a steamer trunk, but it’s my baggage. I own it, I examine it, and I deal with it on a daily basis. My SIBs predate my baggage and will be around should I ever manage to leave that Trunk of Very Bad Things by the side of the road.

On a small scale, my SIBs are not that big a deal. I bite my fingers while trying to process phone calls. Under the table, my nails dig into my leg during a meeting. The actions are discreet, but it took me until my late teens to get my head around the concept that open self regulation via SIBs only left me more vulnerable to those who did not have my best interests at heart. These acts are not a lack of control. I am exerting some small control over my surroundings. Often, I can’t avoid an overstimulating environment. Processing auditory input is difficult for me under the best circumstances. Throw in multiple voices, ambient noise, and fluorescent lights, and it becomes near impossible. Pain works as a filter. Enough pain, and the ambient noise dulls to a roar so that I may at least fake my way through a conversation without tears. These are minor acts that may result in a bruise or a little blood, but no real damage.

Most self injurious behavior stems from what I think of as forced passing attempts. This is a bit of a misnomer because I’m openly autistic, not passing as neurotypical. It’s commonplace for even friendly environments to be sensory land mines, and for people who think they are sensitive to my needs to be miles off target. The world is full of occasions that feel like assaults. Sometimes willful, often inadvertent, and rarely within my verbal ability to act upon in real time, there are demands that I Fit In, Play Along, be a Good Sport, and not be Unreasonable. However, the inconvenient nature of my needs does not make them disappear. Those occasions damage me, chipping away at what is already paper thin defenses until there is nothing left.

Then I break, and the self injury gets ugly.

I take care of others. I try to take care of myself, but in reality, particularly as a parent, there are times when my needs go out the window. I schedule downtime, but life ignores my schedule. I have too many people whose needs must be met at once. I need to maintain composure and stay strong, but with no time to recharge, I become too agitated to properly self regulate. I fall into scripted speech that parrots verbatim criticism and verbal abuse from my past. These aren’t my thoughts, but echolalia voicing my disgust as I hit my head over and over until everything stops. Self injurious behavior during a meltdown always seems to start with the delusion that I’m actually circumventing a meltdown. (I even have the words “Prevent Meltdown” written in my notes.) During, I know this is bad, really, really bad I know for days I will pay in headaches and neck problems, but there is no amount of will power that can stop it from happening.

The best you support you can provide to someone with self injurious behaviors is an open mind. Don’t dismiss possible triggers. If someone communicates to you that an environment or activity is overwhelming, even if that communication is not speech, pay attention to them. Plan ahead. Do not put the ability to handle an event or environment into a success or failure framework, because when you care about someone, you will put yourself in harm’s way to not fail them. Remember that what may seem trivial to you, might be painful to someone else. Adapt to their needs, adjust your perspective, and accept them as they are.


Posted October 7, 2012 by itsbridgetsword in autism

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