"What's Up with Uppers?" Exploring ASD, ADHD, and Stimulant Therapy By John Scott Holman

From: John Holman Date: April 1, 2012 3:38:29 PM CDT To: Michael Leventhal < Leventhal.Michal@gmail.com Subject: Let me know... ...if you are interested in this article for the second edition of the Human Spectrum. I kind of need to sell it to AA16 because I'm in a bit of a cash crunch but I think it is the perfect blend of strong research, and my signature voice. Also, it fits the "labels are for soup cans" theme. It isn't officially promised to AA16. The problem is really the cash crunch. Let me know of we can work something out.

"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 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 noncommital comments 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 expreses 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 with respect 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 equiped 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.

SEX, DRUGS, AND ASPERGER'S SYNDROME

There are many world-renowned autism experts. Their research has greatly improved public understanding. But before using the term neurodiversity was chic, only a of handful of writers, artists and filmmakers were working to move public attention away from The Label to The Person.  SCOTTY HOLMAN was part of that new wave. A poised and articulate writer who could connect autism, homosexuality and drug addiction in a single story, usually told from a personal perspective.

There was an audience ready to listen. Within 2 years of his diagnosis at age 25, Scotty had written 40 articles for print and digital magazines.  I read everything Scotty had written on social media and in publications like ForbesOnline.   His style quick and engaging; His perspective frank and fresh. Of course I can be who I choose to be.  These qualities endeared Scotty to members of diverse communities. But he also spoke for his generation and might have become the modern JACK KEROUAC for the socially conscious 2010's.

People born before the X Generation were still new to the Internet.  Sure, information was out there., Some of it was good; Most was bad.   But it was like background noise.  Advocates couldn't get their questions answered.   Our goal in creating AutismBrainstorm.org. was to establish authoritative, information hub connecting autistic people, parents and educators directly with the experts who could help.    

 In 2012, I hired Scotty to be artistic director for our site.  I loved his writing voice.  He smart, quick, and lovably sarcastic.  A Trifecta in The Arts.  

I had been working on a concept for a novel about autism and decided I needed him to write it.   My concept; his execution.  An alien wakes up on a deserted beach, clueless about who he is or why he is there. What ensues is a personal journey toward self-understanding unfolds.   In order to understand earthlings, our hero must understand what it is to human emotion.  The more he learns, the more human he becomes.

It was the story of Pinocchio updated as well as a metaphor for Scotty's own transformation.

His first book tour would be include a speaking tour of the college circuit. He was going to be phenomenal.  It was going to change his life for the better. But it didn't. Scotty overdosed three years after his first arrest.

Scotty and I were on the phone discussing our book when the police entered his home and arrested him... the first time.

His father had him arrested for breaking an order of NO CONTACT. The night before, Scotty had been at a bar with his sister when she received a text from her father. He wanted to know where she was but she was in no shape to respond. Scotty stepped in and texted back for her. Once home, she confessed what had happened. 

The rest is a long story 

Scotty was stuck in a legal and. bureaucratic WHIRLPOOL for three years.  This is not an unusual outcome for special needs citizens who run afoul of the Law.  We assembled a multi-state legal defense team and support team.  On the team included a police officer, an autism expert, an attorney, a judge, a parole officer.  We raised some money for Scotty through sales of an " I AM AUTISTIC CALENDAR” that featured 12 of Scotty’s pithy observations.

Our goal was to get Scotty released and under the care of our management team.
 

Delays.  Time lines.  Time zones. We never succeeded.  During the first days of his incarceration Scotty suffered physically.   He was denied access to his prescribed medications.   He described the agony of his dystonia from withdrawing one of them from.  Was it true?  Or, was he addicted to Meth?  We'll never know.  

Scotty spent the next year drifting among his friends. Meanwhile plans for the book was going nowhere.  I managed to speak with Scotty on 2 occasions during his last stay in Osawatamie.   But he wrote with a floppy prison pen (no pun intended) on a yellow legal pad.  He was exploring ways to incorporate his prison experiences and the characters he met there into his book.

The following are excepted from the book we were collaborating on when he was arrested. 

  "A REAL BOY” by Scott Holman ...... An Intimate Inquiry into a Fragmented Psyche. After 40 years of secrecy, one woman reveals her multiple personalities and risks losing a lifelong friend. But how can her friend be lost… when she may not actually exist?

CHAPTER ONE: A ROOMFUL OF TEDDY BEARS (December 2012) 

Tanya was late. This was not a bit surprising. Put a paper bag over her head and the poor thing would likely require a GPS system to navigate her way out.  A 36 year-old, Gucci clad rag doll, her utter helplessness was instantly detectable. 

In public she resembled an unusually insecure peacock strutting through a group of elitist and exceptionally proud pigeons. Her hair was cut and dyed to resemble, as closely as possible, Marilyn Monroe’s. The hair, I’ll admit, warranted attention but her poor face was deeply scarred by years of severe cystic acne. I’ve seen photos of Andy Warhol, who suffered similar dermatological issues, posing for the camera in a blonde wig and white dress, his lips pouty, his eyes upturned… Warhol couldn’t quite pull off Marilyn but Tanya could certainly have been mistaken for Warhol impersonating the cinema queen. 

  To add insult to injury, she was insufferably unintelligent, evolutionarily unnecessary… You could see it on her, from the freshly cracking paint of last week’s pedicure; to her crooked, lip gloss sticky smile; to the bobbing and twitching cherry of her Marlboro Light. I’d known many people like her throughout my life.

Never skilled at forming lasting friendships, I tend, instead, to collect misfits, eccentrics, shameless bums… Always the black sheep of an otherwise proud lineage, they are harmless and hapless; most simply made a wrong turn on Easy Bake Oven Avenue and failed to retrace the roads leading back to their sanitary slice of life. 

Others struck off in search of open spaces and new ways of thinking; adventure or money; or perhaps merely a lifestyle guaranteed to piss off their parents. Eventually these fallen angels all meet in the same shadowy places, dazed, jilted and barefoot, limping along the cigarette butt littered fringes of society. I don’t know why I attract such a curious sideshow of comrades. I suppose it’s for the best, if not for them I wouldn’t attract much of anyone at all. 

  My name is Joseph McCloud…

Part 2 

Francine Upjohn did not immediately catch my attention. She was admitted to the Crisis Stabilization Unit, one of a number of units which make up the massive state psychiatric hospital in Osawatomie Kansas, several days after I arrived… or more accurately.. been involuntarily committed, following my suicide attempt. 

This was far from my first attempt and would probably not be my last. My life had become unstable… chaotic. Depression and anxiety ruled my every waking moment. As recently as a year ago when at the age of 25 I was diagnosed with Asperger Syndrome, few ever noticed let alone commented on the unusual behaviors I occasionally displayed. I had learned to cope... sort of. Without support, my life became utterly unmanageable reduced to an unending series of emergency rooms visits and psychiatric hospitalizations." 

Scotty's video Educating Law Enforcement; I'm Not On PCP has been used by many police departments to promote autism awareness.  It might have helped more. His words might have encouraged more people to self-advocate.  He might have been  successful and lived a long, rewarding life.  

But he didn't.