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.