Where Have I Been All My Life? Sex, Drugs, and Asperger’s

Well, I buckled down this evening and reshot the video that vanished from my iPhone last night. I had to record and edit it all alone but I enjoyed myself. I hope you enjoy listening to my writing as much as I enjoy reading it aloud!

 

Autism’s Battle Scars

I had not had a meltdown in well over a month and was so proud of myself. Well, I was bound to come apart eventually. It came on in a flash and it’s hard to tell exactly what triggered it. Panda found me in my room crying, beating my face, flapping my hands and gnashing my teeth. I was already nonverbal. She coaxed me into taking a sedative and drinking some milk We went through our verbal exercises and I was able to speak again quickly enough. I don’t know that I’ve EVER been brought down from a meltdown so quickly.

My temples are bruised this morning and I’m a bit embarrassed but I consider the whole ordeal to be a great triumph, both for myself and for Panda. One moment I was launching off the meltdown richter scale and the next I was crying softly, speaking coherently and in complete control.

I don’t know how many times I’ve been told that I don’t seem autistic, or worse, that I don’t “look” autistic. I have many advantages that others on the spectrum do not, but I’m not simply a lovable, absentminded cartoon character. Autism can have a dark side. Witness one of my meltdowns and decide whether or not I “look” autistic.

Even at its worst, autism always offers opportunities for growth, education, and the strengthening of bonds between individuals on and off the spectrum. Love doesn’t recognize words like “autistic” or “neurotypical.” Love transcends silly labels and even conquers the most ferocious of meltdowns.

Compromise

Upon receiving my diagnosis I made a promise – I would be uncompromisingly true to myself no matter what the cost. I had no idea what an incredible journey this promise would take me on and I never could have truly estimated the cost or the reward. I can no longer recommend that just anyone follow in my footsteps – not without great consideration.

Being uncompromisingly true to yourself may win you a great deal of adulation. This is not necessarily good. Also, you will more than likely be crucified in one way or another. This is not necessarily bad, though the wounds may heal very slowly and forever leave their ugly scars.

After so many years I’m just beginning to grow up. I hate every minute of it. Why? Because I’m learning the necessity of compromise. I still honor myself and my unique attributes, but I’ve come to realize that people fear what is different and though I yearn for a society which nurtures human diversity, I’ve gained a healthy fear of ignorance.

Being different is NOT easy. In fact, sometimes it’s downright dangerous. Choose your battles. Even when you fight for a righteous cause, some battles simply cannot be won, and the cost may be greater than you ever imagined.

To the greatest fans an aspie could hope for!

Just a little expression of gratitude to all the fantastic people who have loyally supported me throughout all my triumphs and personal struggles! You guys have transformed the life of a really sad and misunderstood kid. Thanks to you I have a sense of purpose! I LOVE ALL OF YOU!

 

 

What is an Autistic Monologue?

View my new video! A live, unrehearsed autistic monologue caught on tape!

 

What’s Up with Uppers? Exploring ASD, ADHD, and Stimulant Therapy

By John Scott Holman
Psychopharmacology is one of my primary autistic obsessions. When introduced to a stranger, your average Joe follows traditional (and pointless…?) introductory remarks with polite questions concerning career or family life. I, however, leap directly into a lengthy inquiry of their prescription drug history, firing off questions with machine gun velocity.  I’m frequently reminded that such interrogation is impolite. Despite these criticisms, old habits die hard. I rarely notice the growing discomfort of the poor fellow desperate to escape my intrusive questioning.
That’s autism for you… When it comes to the daily dance of manners, I’m afraid I have two left feet. My impulsiveness is epic – I always appear to be six beers deep. I’m obnoxious, disorganized, obsessive, and restless.  Are these symptoms of autism? ADHD? Both? More importantly, are they distressing enough to warrant psychiatric intervention?
What is autism? What is ADHD? Are they distinct syndromes that happen to overlap or nothing more than a collection of comparable symptoms lumped together for the sake of convenience. As Connie Erbert (Director of Care and Autism Outreach, Heartspring) told me, “It’s not about treating labels. Labels aren’t people. It’s about treating symptoms. “
My first conversation with New York Times bestselling author and fellow aspergian John Elder Robison was characteristically singleminded. I figured Robison would have a fascinating history of psychopharmaceutical treatment. I was disappointed to discover that he has remained religiously unmedicated, aside from the occasional puff of an asthma inhaler. He did, however, offer some choice words regarding the connection between autism and ADHD, “One day when we have unravelled the autism puzzle, I predict we will find ADHD is rolled in there somewhere, as a subset of the spectrum.”
Hmmm… valuable insights… but inhalers are still boring.
Luckily, this celebrated author’s son, Jack “Younger” Robison, is every bit as obsessed with chemistry as I am.  He initiated our first conversation by abruptly asking my thoughts on the potentially empathogenic effects of oxytocin on the autistic mind. This began an hour long discussion riddled with such choice words as “stereoisomer” and “methylation.”  One smart kid! Yet despite his undeniable brilliance, Jack also struggles to meet the organizational demands of daily life. In many ways, he’s the ultimate absentminded professor.
Though the Robisons, myself, and other less profoundly affected individuals are easily overwhelmed by the demands of daily life, we are, nevertheless, living proof of the value and capability of autistic citizens. Yet finding my way has been one helluva screwball pilgrim’s progress.
When faced with the mounting pressures of a competitive and unforgiving world, many autistics choose psychiatric assistance. Clarity, motivation, and heightened executive functioning are often obtained through the use of popular stimulants approved for the treatment of ADHD. According to “Asperger Syndrome: intervening in schools, clinics and communities,” by Linda J. Baker and Lawrence A. Welkowitz, “The ADHD-like symptoms associated with ASD often seriously interfere with the effectiveness of functioning and the ability to utilize behavioral and educational interventions in the ASD population. Therefore it is not surprising that many of the pharmacological agents used in the treatment of ADHD are frequently tried in this population.”
Stimulants of the amphetamine (Adderall, Dexedrine, Vyvanse) and methylphenidate (Ritalin, Focalin, Concerta) families are useful tools, and occasionally lifesaving treatments.  Unfortunately, these “uppers” are also coveted recreational drugs, cherished by every frat boy desperate to write an important paper after crawling out of bed in a Coors Light and bong smoke flavored haze. Facing academic expulsion, our crafty party boy may override his physical and mental fatigue with an illegally obtained dose of Adderall or Concerta. Tsk… Tsk…  Acclaimed author Chuck Palahniuk (“Fight Club,” “Choke”) expressed the unfailing allure of stimulants, stating, “Amphetamines are the most American drug. You get so much done. You look terrific, and your middle name is Accomplishment.”
Whether used or abused, stimulants remain pharmaceutical celebrities among a generation raised on Cocoa Puffs and midday visits to the school nurse for a booster dose of Ritalin. But can these powerful medications truly assist an autistic individual? If so, what specific benefits may be expected, what are the potential side-effects, and which particular medications are the most effective? The answers to these questions depend on who you ask.
Peter Bell (Executive Vice President, Programs and Services, Autism Speaks) has no general opinion on the use of stimulants in the treatment of autism, vaguely stating that, “Some seem to have great success with them, but many find their symptoms aggravated during treatment.” Bell’s rather vague comments do not indicate any evasiveness on his part, and actually reflect those of many I’ve spoken with. Autistic or neurotypical, no two minds are alike; a drug’s effectiveness may vary greatly from patient to patient.  Are we treating labels or symptoms, a diagnosis or a person? Remember… regardless of their diagnosis, no two people are the same.
Shanti Roy, an Australian autistic and Ritalin user, often discusses her symptoms and methods of treatment in her popular blog, “Platform 25″ (
http://latedx.wordpress.com/
). Her candid responses to my questions highlight the ups and downs of life on therapeutic uppers, “As someone with co-morbid ADHD, I benefit greatly from the medication. I am able to organise myself, process written information, have better control over emotions, increased memory, and even have a willingness to socialize!”
However, Roy’s treatment has not been without its share of unwanted effects. “I’ve had all sorts of uncomfortable side effects, such as overstimulation, increased anxiety, facial tics, appetite suppression, etc…” Despite these troublesome side-effects, Roy believes the benefits have greatly outweighed any discomfort.  Would she give up her Ritalin? “Hell no!”
Roy’s enthusiasm is supported by a substantial number of peer reviewed studies.  One such study, “Efficacy of Methylphenidate Among Children with Autism and Symptoms of Attention-Deficit Hyperactivity Disorder” by Benjamin L. Handen, Cynthia R. Johnson and Martin Lubetsky, included twelve test subjects. “…eight subjects responded positively, based upon a minimum 50% decrease on the Conners Hyperactivity Index. Ratings of stereotypy and inappropriate speech, which are often associated with autistic core features, also decreased.”
Additionally, while therapeutic doses of amphetamines carry a slight risk of neurotoxicity, a study by T. j. Voltz, ”Neuropharmacological Mechanisms Underlying the Neuroprotective Effects of Methylphenidate,” asserts that, “…methylphenidate has the intriguing ability to provide neuroprotection from the neurotoxic effects of methamphetamine and perhaps also Parkinson’s disease…”
Jeramy Townsley expresses a contrary viewpoint in an essay entitled “Pharmacotherapy of Autism” (
http://www.jeramyt.org/papers/autism-pharmacotherapy.html
), in which he warns against the use of stimulants to treat autism spectrum disorders, “Attention disorders with hyperactivity must be treated with caution in the autistic, because stimulants often cause severe exacerbation of autistic symptoms.” Townsley’s assertion of a therapeutic catch-22 is reinforced by a great deal of anecdotal reports. While stimulants may decrease hyperactivity and increase attention in the autistic patient, their side-effects include many symptoms already associated with autism (obsessiveness, anxiety, motor tics, rage, etc…) which may increase in severity upon initiation of stimulant treatment.
As you can see, stimulant treatment among autistic children, adolescents, and adults is a highly controversial subject. I will neither endorse nor oppose their use – I speak only for myself.  However, I feel no shame in admitting that this class of medications quite literally saved my life.
Due to my lifelong hyperactivity, lack of motivation, spastically robotic social skills, and failing grades, I was finally placed on an amphetamine medication. Prior to beginning amphetamine treatment I was utterly hopeless, overwhelmed by even the simplest of daily tasks.  An MRI would have likely revealed a plate of scrambled eggs where my brain should have been.
I found the experiences of Alex Plank, the 25 year-old autistic founder of wrongplanet.net, to be strikingly similiar to my own. Though Plank considers medication to be a private matter, he freely admitted to struggling with inattentiveness, hyperactivity, and impulsivity, “I always knew I was different.  I had behavioral problems all along and we had a lot of doctors trying to understand what was going on. I could tell other people didn’t see the world like I did. At times it got lonely. I didn’t know why I was different. It still gets lonely sometimes but I’m proud of who I am.”
Are the symptoms of autism and ADHD to be celebrated or medicated?
Like Alex Plank, I am proud of who I am, neurological miswiring and all. However, Asperger Syndrome and ADHD can be a downright pain in the ass sometimes.  I do not take stimulants in an effort to disguise my unique and wonderful attributes. My medication enhances my singular abilities and minimizes my deficits. In other words, medication doesn’t change who I am… it allows me to be the best version of myself.
Sharon Volk, a dear friend and special needs teacher at Kansas School of the Deaf, beautifully expressed a similar sentiment, “I want to clean my house. I want to check what needs to be cleaned first. I do not want to clean a room that does not need to be cleaned!
Just like anything else in life someone else may look at a room and say that it is not clean enough. The room may really need cleaning. The medication could be the bleach that makes them shine!”
My first dose of amphetamine was a shot of clarity to my hopelessly scattered brain, the exact bleach I needed to finally shine.  I was suddenly able to complete tasks, prioritize, work towards building a career, and discuss my favorite subjects without disturbing the neighbors three doors down – though I always strove to use my “indoor voice,” I couldn’t seem to cough loose the megaphone lodged permanently in my throat.
During my years of misdiagnosis, I was force fed a small pharmacy.  I’m convinced I’ve taken more doctor prescribed drugs than Elvis Presey.  Psychiatry is a game of trial and error which often requires much time and even more patience. I’ve experienced the benefits and downfalls of nearly every currently marketed stimulant.
Dextroamphetamine turned my life around and set me on a path of success which I have yet to stray from. Methylphenidate, on the other hand, made me feel as cracked out as Rick James circa 1981.
Benefits and side-effects may vary from person to person, from drug to drug, and even from brand to brand. Contrary to popular belief, generic equivalents are NOT identical to their brand name counterparts. According to the FDA’s official website (
http://www.fda.gov/drugs/resourcesforyou/consumers/buyingusingmedicinesafely/understandinggenericdrugs/ucm167991.htm
) “When a generic drug product is approved, it has met rigorous standards established by the FDA withrespect to identity, strength, quality, purity and potency… very small variations in purity, size, strength and other parameters are permitted.”
Very small variations? Hmmmm…
According to an article by Melissa Healy in Los Angeles Times (
http://articles.latimes.com/2008/mar/17/health/he-genericside17
), “In almost all cases, the FDA permits a generic drug to release 80% to 125% of an active ingredient into the bloodstream, compared to that released in a single dose of the original medication.” How exactly does this effect the mental health of millions of consumers? Well, a great deal more than the FDA would have us believe.
A single 10mg tablet of generic Adderall or Ritalin, which has met the FDA’s “rigorous standards,” may actually contain anywhere between 8 -10.25mgs of the active ingredient. Bioequivalent? My autistic ass! If you happen to pick up different generic brands from month to month, you are unwittingly altering your dose by as much as 45%. A stable brain is a healthy brain, and an unstable dosing regimen will do little to improve symptoms and may actually aggravate them.
Such complications can leave the patient feeling discouraged and untreatable. To make matters worse, autistic people are notoriously sensitive to the slightest variations in prescription drugs. However, intolerance to a single drug, brand, or formulation is no reason to give up.
As mentioned, I cannot tolerate methylphenidate and quickly discontinued its use. Next came Vyvanse; a wonderful medication… for about a month. It pooped out unexpectedly and I moved on to Adderall (mixed amphetamine salts). I now avoid that one as well due to the levoamphetamine which comprises 25% of each dose. Levoamphetamine is the left handed isomer of the amphetamine molecule, and constitutes 50% of amphetamine in it’s organic form.  Levoamphetamine has a significant impact on the peripheral nervous system, resulting in anxiety, restlessness, muscle tension, irritability, strong physical stimulation, and obsessive compulsive behaviors. Are those really autism friendly effects? I suffer enough of those symptoms without drugs.
Levoamphetamine does, however, give Adderall it’s exceptionally motivating edge. Many patients enjoy the energizing rush of this popular, four salt mixture. I, however, do not, and secretly suspect Adderall to be an expertly marketed experiment in pharmaceutical recycling, a mishmash of leftovers swept from the production floor and pressed together into a trendy little tablet.  Just kidding… mostly. There are an untold number of individuals who not only tolerate, but swear by Adderall… I’m just not one of them.
Pure dextroamphetamine, on the other hand, provides me with a gentle state of mental arousal, a mild boost in mood and energy, and far less physically taxing side-effects. Dextroamphetamine is the dextrorotatory isomer, isolated from it’s levorotatory twin and sold under the brand name Dexedrine. Dexedrine is far more CNS specific, resulting in stronger mental effects and decreased physical stimulation, anxiety, etc…  Though infrequently prescribed, it remains an excellent alternative for those too sensitive to the nastier effects of Adderall.
Methylphenidate also has a single isomer alternative, a purer and cleaner version of the original product known as dexmethylphenidate, or by its brand name, Focalin.
So many options… Confused yet? My quest for mental stability has been a twisty and arduous one… but the pain and frustration have proven worthwhile. Psychopharmacology is no simple matter and effective treatment requires time and energy on the part of the patient. Be proactive! Do your research, be assertive, and pay special attention to all changes, positive and negative, which occur after the initiation of treatment. Daily medication journals are an excellent means of assuring self-awareness and discipline. Control your medications -don’t let them control you!
And remember… if at first you don’t succeed…
It’s humbling to stare into a bottle of pills each morning knowing full well that I’d be an utter failure without them.  Nevertheless, I swallow my pride… and my pills. “Man up” may have worked for my father, but I’m not organically equipped with that good ol’ American machismo. Besides, even John Wayne drank whiskey.
My medications greatly improve my quality of my life. This does not mean stimulants are appropriate treatment options for just anyone. They have the power to both save and destroy lives. My own experiences are just that… MY experiences. Remember, no drug is a perfect fit for any diagnosis. We must treat symptoms, not labels. One, several, or none of the currently marketed stimulants may be of benefit. If reading this article inspires you to seek treatment for yourself or your child, I applaud your bravery and wish you the best of luck. However, if you pop your first dose of Adderall and wake the next morning in a cold cell, half naked, and handcuffed to Lindsay Lohan…   just remember that I am in no way responsible. Oh, and  get me Lohan’s autograph when she has a free hand.

Fugitive Autistic Filmmaking Trailer 1

Trailer 1

Autism RX Part 1

The medication of autism spectrum disorders is a complex and controversial subject. So let’s jump right in and discuss it!

Inside Out: Through the Eyes of Autism

By John Scott Holman

 

I don’t know if I am standing, sitting, or lying down – it is dark and I cannot find my body in the dark. Are my eyes open? There is a bit of light coming from somewhere. Light is good. A little light chases away a little fear. The light may get bigger. When the light gets bigger I won’t be alone.

If I scream the light may get bigger.

If I scream she will come.

I scream.

Nothing… She isn’t coming. It could be dark forever. Will it be dark forever?

I wait in my crib for the light to get bigger. Sometimes I scream.

I am afraid, and I am alone.

***

“I always tell the truth, even when I’m lying…” I scribble these words across the wall of my room. My pens will be confiscated as soon the staff realizes I’m misusing them. I don’t care. I don’t care about anything.

How many days now?

A naked man wanders into my room and begins rummaging through my drawers. I stare at him. He turns to me. His eyes are empty, as if they aren’t used for seeing at all. He scratches his chest and leaves. A nurse catches him in the hallway, takes him by the arm, and guides him back to his room.

I reach beneath my mattress and pull free a crumbling Valium, carefully enfolded in a bit of paper. I need to quiet my restless mind.

How many days? Does it matter? I am not normal. I am clearly insane and always have been. They won’t be letting me out of here any time soon…

I am afraid, and I am alone.

***

Though seldom aware of my emotions, I do realize when I am afraid and when I am not afraid. I know when I like the way I’m feeling and I know when I do not. I’ve also learned what I’m supposed to be feeling, and how to act accordingly. I’ve become quite skilled at faking emotions. Because of this, much of my life has been a well-meaning lie. I don’t know where the truth ends and a lie begins. I do not like the way this makes me feel.

The world is a frightening and confusing place, particularly for someone with autism. As a society, we claim to value honesty. However, people seldom appreciate the truth. You are expected to say what others want to hear, and think and feel only what is deemed appropriate. From birth on, society grooms us to be players in a complex and empty game, to know the truth, yet spin an intricate web of half-truths and little white lies. The autistic mind frequently resists participation in this charade. I’ve always felt like the only kid at the puppet show who can see the strings. If I insist on pointing them out, I am shunned and ridiculed. I’ve never played well with others, and I don’t have much common sense. Albert Einstein, who many speculate to have been autistic, once said, “Common sense is the collection of prejudices acquired by age eighteen.”

When someone speaks to me of their emotions, I pretend to understand, and respond as I’ve been trained to. I think of all I’ve learned about the human brain, and try to discern that person’s neurological state. I can’t quite grasp the meaning of “happy” or “sad,” though I do understand the chemical elevations and deficiencies necessary to produce these states. The DSM-IV describes this symptom of Aspergers, rather vaguely, as a “preoccupation with parts of a whole.” I process information from the inside out, seeing the trees long before the forest. This is why I’ve never appreciated a sunset, yet can spend hours staring at Picasso’s lovely cubist maidens; I see the world in fragments.

Few people think as I do. I try to communicate as best as I can, yet despite my verbosity, I often feel that I’m speaking a language only I can understand. This is not only awkward, but dangerous, as many people are deeply offended by the slightest misstep in the social dance. Out of touch with my emotions as I am, I’m certainly glad I’m not as oversensitive as some.

There are countless constantly shifting social rules involving posture, facial expression, appropriate and inappropriate topics, when to alternate topics, etc… For most people, adherence to these rules requires only subconscious effort. Social interaction is infinitely complex, and I believe many are offended by my behavior without even knowing why. Likewise, most people have no idea how they’ve managed to upset me. We aren’t playing by the same rulebook.

***

I’m standing in a long, empty hallway. The teacher sent me to wait out here. She is mad at me. Why?

The hall echoes with the far away laughter of children. They are all so far away… I feel like I’m underwater.

I stare at my shoelace. It used to be very white, like teeth on television. Now it is gray like dishwater, and frayed at the end. I like to look at my shoelace. I like to see things close up. It helps me to forget about the underwater feeling.

I hear a basketball bounce somewhere outside. It is a little deflated… I can tell. How can so much quiet be so full of sounds?

Teacher is mad at me. I want to know why. “You know why,” is what she told me. She is lying, because I don’t know why. Why would the teacher lie?

I’m standing in a long, empty hallway.

I am afraid, and I am alone.

***

At a young age, I began to study characters in film, hoping both to escape the pressure of my own world, and better understand social interaction within it. It was during this time that I realized something remarkable; movies granted me immediate access to a wide spectrum of human emotions. I felt the joy, and pain of romance while watching “West Side Story,” was heartbroken, enraged, and uplifted by “To Kill a Mockingbird,” and learned of human friendship, and emotional vulnerability by watching, ironically, “ET: The Extra Terrestrial.” The emotional situations onscreen were distant enough to be nonthreatening, underwhelming enough that I could actually experience them in the moment.

Movies made me feel less alone… almost human. But movies weren’t real. I still couldn’t respond emotionally to my own environment, not at the appropriate times. Instead, my feelings would build up, until finally, overwhelmed by the pressure, and triggered by some small interruption in my routine, I’d suddenly lash out, breaking things, cursing, and injuring myself. This emotional displacement and instability, along with my eccentricities, and obsessions, made social interaction seemingly impossible. I tried to reach out, but my attempts only forced me further into my mental prison. I just wasn’t normal.

As an adolescent, I embraced my differences in the only way I knew how; I flaunted them. At 16 years-old I was a sullen, defiant, later-day James Dean with a chip on my shoulder and a quiet, blue flame burning in my brain. Initially drawn by my good looks and boyish charm, my peers would soon be confused and repelled by my urgent need to shatter their illusions. I was dangerous, a freak and a heretic, everything Sunday school, and Nancy Reagan warned you about.

Misdiagnosed with Bipolar Disorder, I was forced to take countless dangerous and unnecessary medications, which resulted in horrific side-effects, and only increased my sense of confusion and isolation. I trusted no one. My world was claustrophobic, nightmarish, threatening… I began using street drugs and attempted suicide numerous times. I was frequently confined to mental hospitals. All the while, doctors insisted that I was Bipolar, though I’d never had a manic episode in my life. Not once was Asperger Syndrome suggested.

***

            I brush my teeth in the dark to avoid seeing my empty eyes in the mirror. I’m smoking a cigarette. I’m smoking a cigarette, and brushing my teeth at the same time. I miss my mother. I laugh, and the sound is like breaking glass. Why am I laughing? What am I feeling? I’m blank. I’m a ghost.

            Why can’t I just be normal? They all want me to be normal. I don’t want to be normal. I don’t want to be anything. I don’t want to be…

            I slide down the wall and sit on the cool floor. My cigarette goes out. I’m left in the dark.

            Nobody remembers moments like these; moments afraid, and alone in the dark. They don’t matter.

            Moments like these are all I know.

            I am afraid, and I am alone.

***

At 24 years-old, I was prescribed a stimulant for my ADHD (stimulants had typically been withheld, based on the belief that they would exacerbate my “mania”). With this medication I improved dramatically. When I say that I improved, I mean that I was no longer getting into legal trouble or being hospitalized. I was still obsessive, awkward, and socially inept. I figured my symptoms were merely those of severe ADHD and continued taking my stimulants. I still felt distant, disconnected, as if no amount of words could ever build a bridge between myself and others.

For the most part, however, I was happy. It had been a long time since I’d been happy. I didn’t feel that I deserved happiness, and tried not to consider why.

The medication gave me a modicum of confidence; I stopped pretending I was like everyone else. I stopped trying to fit in, and grew closer to the happiness that was so alien to me. I was learning to accept myself, but I had yet to understand myself.

***

I’m doing better.  I like my new pills. I realize that I have a remarkable mind. It may or may not be a dysfunctional mind, but regardless, I know that it is one so extraordinary, so labyrinthine that I become lost within it, wandering alone through an interior landscape that defies description. I know that people are trying to reach me from the outside, but they are just so far away…

 I don’t understand people and have no regard for their concerns. I try to be empathetic, but how can I understand someone else’s emotions when I can’t even recognize my own?  I do my best to be polite, and pay attention to others, but I always feel that I’m putting on a show…  that I am lying.

I am afraid, and I am alone.

***

It has been suggested that I might have Asperger Syndrome. I’m not sure how this makes me feel. I laugh, but I don’t think anything is funny.

I read over the diagnostic criteria. My stomach drops. I think I will be sick.

I continue reading but my hands are shaking. I realize that I am crying.  I’m crying, but…

…but I’m not a monster. I’m not evil.

I am different… and that is OK.

I don’t have to pretend anymore. I don’t have to lie. Not like before. In this instant I experience every conceivable human emotion.

I am happy… and I deserve to be.

I am angry… and I am justified.

I am disappointed… and I will get over it.

I am excited… and life is full of promise. 

 

I am afraid… but I am not alone.

All the King’s Horses:Shattered Memories of a Borderline Mother

By John Scott Holman

“All is caprice. They love without measure those whom they will soon hate without reason.” – Thomas Sydenham, seventeenth-century physician, describing patients he referred to as “hystericks.”

”I’m sorry momma. I never meant to hurt you. I never meant to make you cry but tonight I’m cleaning out my closet.” – Eminem

My mother was truly beautiful. I don’t say that as a proud son eager to lavish her with published praise. She was beautiful – that is a fact. Breathtaking as she may have been, she was also irreparably damaged, the product of an age-old pattern; the lovely and pure are victimized by bitter parasites who suck away every obtainable drop of innocence, thirsty, perhaps, for their own long lost purity.

Such a predator forever devastated my mother, and consequently, myself. In quiet rooms he skillfully unthreaded her psyche as if it were a rag doll in his callous, elderly hands. She fell into pieces each time the final thread was mercilessly pulled loose. Yet her grandfather’s thirst was unquenchable. Her grief and shame were not enough to satiate his compulsion to dominate and desecrate.

The abuse continued in secret for nearly ten years. Her childhood innocence was stolen from her at a mere two years of age, the instant she first shuddered at his unwelcome touch. Her mind, however, split apart a little at a time, until her identity was finally and forever shattered. All the king’s horses and all the king’s men couldn’t do a damn thing about it.

My mother’s sexual abuse left her, somehow, less than human… not a real woman, whole and centered, but a complex puzzle with too many pieces to ever be assembled. Though internally deranged, she cultivated a flawless public image of self-empowered, yet domestically inclined womanhood. So flashy… so charming… so empty…

She was only a caricature drawn in lipstick on the bathroom mirror, smudging and fading a bit more every day. I needed someone to protect and reassure me… unfortunately, so did she.

My dearly deranged mother has Borderline Personality Disorder, a mysterious condition characterized by instability in interpersonal relationships, fragmented self-image, intense fear of rejection, ceaseless manipulation, seemingly arbitrary and often violent outbursts, etc…

According to the nationally best selling book, “I Hate You – Don’t Leave Me.” by Jerold J. Kreisman, MD, and Hal Straus, “The borderline shifts her personality like a rotating kaleidoscope, rearranging the fragmented glass of her being into different formations – each collage different, yet each, her. Like a chameleon, the borderline transforms herself into any shape that she imagines will please the viewer.”

The fragments of my mother’s identity took center stage one at a time, each utterly unique characters in a baffling one-woman show. Her fractured performances typically dazzled and charmed the members of her gullible audience. They were also deeply painful and disorienting for those in closer proximity to the stage. I had the only backstage pass. My childhood was marked by unwilling, captive voyeurism. I was the sole witness of my mother’s private madness and all-consuming sexual shame.

Publicly, she was a champagne-sweet butterfly of grace and social finesse. She fooled them
all so well, night after night, show after show… Each time the curtain fell and the audience applauded their approval, I forced myself to swallow the tell-tale vomit threatening to spew from my mouth. My mother has never been onstage a day in her life… but Laurence Olivier himself could not have outperformed her when she interacted with the public world, donning one carefully crafted persona after another.

Like any child, oblivious to the vast diversity of life outside their immediate domestic environment, I believed all mothers were like mine. I was an adolescent before I began to comprehend the severity of my childhood abuse. By that time my mother had lost all memory of her frequent, unpredictable episodes of violent, degrading, and perversely inventive abuse.

She now tells me that I, “greatly exaggerate the mere handful of times she even punished me.” When she says this, I know that she is not lying… not intentionally. She has repressed and forgotten those shameful memories. This shouldn’t be surprising. She also lost all memory of her sexual abuse for a ten year period, beginning when the years of molestation finally ended (puberty and the development of a womanly figure saved her from the old man’s perverse interest). Shortly after my birth, her long dormant memories erupted to the surface. My childhood was marked by her freshly unearthed sexual shame and the blinding delirium of her hysterical identity crisis.

One study, “Biparental failure in the childhood experiences of borderline patients” (Zanarini MC, Frankenburg FR, Reich DB, et al) proposes that, “Patients with BPD have been found to be significantly more likely to report having been verbally, emotionally, physically or sexually abused by caregivers of either gender. There has also been a high incidence of incest and loss of caregivers in early childhood for people with borderline personality disorder.”

It would be decades before I was finally diagnosed with autism spectrum disorder. Autistic children are not especially adept at walking on eggshells, and my mother had a way of laying them thoroughly over every available walking space. One wrong word, or gesture, a compliment paid to the wrong person, a sudden bout of food poisoning and my ensuing neediness… would send her into a blind rage.

Prestigious psychologist, Marsha Linehan, a foremost expert on the subject has stated, “Borderline individuals are the psychological equivalent of third-degree-burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering.”

Before anyone uses my story as supportive evidence for the long debunked “refrigerator mother” theory of autism causation, I must explicitly state that my childhood mistreatment is in no way related to my diagnosis. My mother’s abuse may have exacerbated my developmental delays, but could not possibly be responsible for my infantile verbosity, perseveration, mild savantism, hyperlexia, dyscalculia, synesthesia, or any other of my longstanding symptoms commonly associated with autism spectrum disorders. Ironically enough, I believe I acquired otherwise unattainable social skills as a direct result of my mother’s personality disorder.

People often ask me how I learned to intuitively understand and respond to the shifting emotions of others despite my autism. I’ve always avoided this question because the answer is both uncomfortable and alarming – I had to learn to read my mother’s labile moods or I would be beaten senseless. Understanding the emotions of others was not merely an elusive social advantage, but an essential survival skill.

One of my family’s favorite home videos is footage of me at four years-old, struggling to break free of my mother’s embrace as I watch my father drive away for another nine month absence from my life. My face is red and streaked with tears as I scream, “Daddy, don’t go!” My father has always believed this to be a home video testament of my love for him. I’ve never had the heart to tell him that it is merely evidence of the overwhelming terror I felt each time he left me alone with my mother.

Worse than the physical abuse, was the constant blaming, shaming and emotional invalidation I experienced. After hurling me down the stairs or forcing me to lick up my own vomit, my mother would draw me close to her and coo in my ear, “Oh, Scotty boy, quit whining. You don’t have it so bad. When I was your age my grandpa would take my favorite stuffed koala bear. I’d go looking for it, but would find him instead. Then do you know what he’d do to me?”

I do know. I knew at five years-old and I know now. Those detailed stories clawed their way deeply inside my memory, forever altering my development. “I never told you about that stuff,” my mother will insist. She may believe she is speaking the truth, but I know better. I have merely to mention her koala bear and she will be instantly frozen in sudden, dissociated shock, returning moments later in a slight daze, a rapid change of subject ready on her tongue.

I have no doubts that my mother’s illness is directly related to her traumatic upbringing. Perry et. al’s “Neurobiological Analysis of Early Trauma,” reinforces this speculation yet again, “…despite being distanced from threat and the original trauma, the stress-response apparatus of the child’s brain is activated again and again.”

This would suggest that BPD is more closely related to chronic Post Traumatic Stress Disorder than the classic personality disorders. But why the continued pattern of abuse from generation to generation?

Matthew Huston’s book, “Borderline: Walking the Line,” offers an eloquent explanation, “BPD doesn’t just affect the one who receives the diagnosis; it often leaves a wake of turmoil through entire families as the emotional and relational disturbances ripple outward.

When a role model treats you as an extension of herself—there to meet her needs—the trauma can be long lasting. It takes a very strong person to overcome the effects, let alone maintain a constructive relationship with the parent.”

Why, you may wonder, do I feel the need to share such intimate and distressing details with the world? Because nothing in my life, long riddled with extraordinary tragedy, has induced more profound psychic disturbance than my mother’s mental instability. I’m purging myself… my words here are vomit, the expulsion of a poison long sickening my stomach.

If I’ve let the cat out of the bag, I feel no shame for doing so. There is a sickness in secrecy. My mother experienced ten years of sexual abuse for the sake of keeping up appearances and maintaining the family’s integrity. I don’t claim to be polite – fuck polite. I will be shamelessly transparent. Enough has been swept under the rug while my family disintegrated.

According to the American Association for Marriage and Family Therapy, “Family members often feel mystified and exhausted by their relative’s illness. The intense mood swings and anger outbursts can be frightening and disruptive… It is not unusual for relatives and spouses of BPD individuals to feel depressed themselves, and to struggle with feelings of guilt, shame and helplessness.”

When my mother was at her best, she was the most delightful, doting, spontaneous, and fun-loving woman, with the inflated optimism of a child and the attentive nature of the maternal ideal. What’s more, she was cool! She taught me how to dress, interact with my peers, and climb the adolescent social ladder. Grateful as I am for this specialized instruction, I know now that her motives had little to do with my own happiness. Her bottomless insecurity demanded a picture perfect family. She forcefully assembled her husband and children as one would each article of clothing in the perfect outfit. If a blouse, skirt or child failed to please her, they were quickly discarded.

Will my family ever heal? Can BPD be cured? Interventions and therapy are difficult to come by as this condition is highly stigmatized and avoided by many medical professionals. Treatment is made nearly impossible by the profound self-deception at the core of the patient’s disorder.

Bitter as I often am, I still understand my mother’s utter inability to control or recognize her behavior. I cast no blame on her – she couldn’t help the way she treated me. She was a product of her conditioning. Aren’t we all?

It has taken me 25 years to realize that I am nobody’s king, possess neither horses nor men, and will never be able to put my mother back together again. I’d love to see her restored to the complete and stable woman I’ve never known and likely never will. But her mental and emotional renewal is outside my control. I can only hope that by courageously relating these darkest experiences of my troubled life, I may raise awareness of a stigmatized illness. Perhaps by scattering the seeds of my words, I will miraculously plant a germinating bit of inspiration in the mind of someone, somewhere, destined to outperform royalty, equestrian and human effort… someone who may one day manage to put a truly beautiful – and perhaps not so irreparably damaged – woman back together again.

Follow

Get every new post delivered to your Inbox.

Join 40 other followers