The Parent’s Guide to the Medical World of Autism: A Physician Explains Diagnosis, Medications & Treatments
All marketing and publishing rights guaranteed to and reserved by:
721 W. Abram St.
Arlington, TX 76013
(800) 489-0727
(817) 277-0727
(817) 277-2270 (fax)
E-mail: info@fhautism.com
www.fhautism.com
©2013 Edward B. Aull
Cover and interior design, John Yacio III
All rights reserved.
Printed in the United States of America.
No part of this product may be reproduced in any manner whatsoever without written permission of Future Horizons, Inc, except in the case of brief quotations embodied in reviews.
ISBN: 978-0-986067-34-1
This book is dedicated to those patients and
families who have enlightened me over the years
to the panorama of autism spectrum disorders.
Acknowledgments
I wish to thank Pamela Aull, Martha DellaValle,
Martha Faul, and Delise Webber for reviewing the
book and adding helpful commentary.
Preface
Foreword by Temple Grandin, PhD
Introduction
1 Diagnosis of Autism Spectrum Disorders
2 Causes of Autism
3 Evaluations
4 Autism
5 Asperger’s Syndrome
6 Medications
7 Atypical Antipsychotic Medications
8 ADHD
9 Sleep Issues
10 Treatment Examples
11 Tenets of Treatment
In Closing
About the Author
Index
This book was written with the intention of helping families and professionals understand the difficulties and nuances of using medications to treat patients with autism spectrum disorders. Hopefully, after reading this book, you will understand some of the difficulties with using medication, and you’ll understand why certain responses to treatment may be acceptable and some not. I hope it will be especially helpful to you if you have previously given medication a try without good success and you would be willing to give it a second chance. I hope to explain why medications may have met with poor success and why it may be worthwhile to give them another trial.
Since the writing of this book, the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) has been finalized and published. Severe autism, moderate autism, high-functioning autism, Asperger’s syndrome, and pervasive developmental disorders—not otherwise specified have been subsumed under autism spectrum disorder. The autism spectrum is then divided by severity levels, which are dependent on the level of support required for social communication and restricted, repetitive behaviors.
Throughout this book, however, I am going to continue to use the DSM-IV terminology. I believe the older terminology is easier to understand, and I believe it will continue to be used by both professionals and families. It should be noted, however, that some of the patients I have written about who have milder autism may no longer meet the DSM-5 criteria for an autism spectrum disorder. Instead, they will meet the criteria for social (pragmatic) communication disorder. However, I believe many patients who meet the criteria for social communication disorder will benefit from medication treatments that are used for patients with autism spectrum disorders.
This is the first book I have read in which a wise and highly experienced physician has discussed his use of medications with many different types of individuals on the autism spectrum. Medications, when they are used with a careful, conservative approach, can help many individuals. I began taking a low dose of an antidepressant in my early 30s, and it stopped my perpetual anxiety and panic attacks. During my 20s, my anxiety progressively worsened. My nervous system was on high alert and was vigilant for nonexistent dangers. I was like a vigilant antelope on the African plains, constantly on the lookout for lions. The constant stress was destroying me, and I was wracked with headaches and colitis. Within 3 days of taking an antidepressant, my pounding heart, sweaty palms, and colitis almost completely vanished. Antidepressants, when they are prescribed correctly, can work wonders for anxiety. However, it is important not to give too high a dose. A dose that is too high may cause a person who has a high level of anxiety to experience insomnia and agitation. They will feel like they drank 20 cups of coffee.
In 2010, I learned why I had been so anxious. A brain scan conducted by Jason Cooperrider at the University of Utah showed that my amygdala in my brain was three times larger than normal. The amygdala is the brain’s fear center. My nervous system had been operating in a constant state of fear. I have been taking 50 mg a day of desipramine for 35 years now. Since I am stable, I think the best thing to do is keep taking it.
Autism is highly variable—some individuals with autism have severe anxiety problems, and others do not. Several of my friends who are not autistic work in design, and they take a low dose of fluoxetine (trade name Prozac) to control their own anxiety and keep them from returning to an addiction to drugs and alcohol. There seems to be a link between anxiety and the artistic or mathematic mind. It appears that people on the autism spectrum who are good at art or math tend to have more anxiety than more verbal, word-based thinkers do, and these folks also often love history. I do not have scientific evidence for this, but I have had conversations with folks at many autism meetings to support this observation.
Dr Aull has come up with an autism continuum that does not follow the Diagnostic and Statistical Manual of Mental Disorders diagnostic criteria. It is based on his many years of clinical practice. He discusses low-, moderate-, and high-functioning autism and low-, moderate-, and high-functioning Asperger’s syndrome. It is best to view this as a continuum that ranges from the mildest autism traits to more severe cases. Dr Aull created his own autism continuum because it helped him prescribe the right medications. When you read this book, it is best to look at the different cases he presents and see which ones are most similar to your child or student.
This book is essential reading for every parent who has a child on the spectrum who is either taking medication or considering the use of medication. When I read over the patient examples he uses to illustrate the different “levels” of autism, most of the cases he presents seem to be on the moderate- to high-functioning end of the spectrum. He cited relatively few cases on the most severe end. This would include older individuals who are nonverbal and may have other serious conditions, such as epilepsy. This book provides very little discussion of anticonvulsant mood stabilizer drugs, which are often useful for anger attacks that “come out of the blue,” with no stressful event preceding them. This is another indicator that the book may be most helpful for individuals who are either verbal or partially verbal.
A physician in Canada named Joe Huggins has worked with the most severe nonverbal clients who have been kicked out of many programs, owing to severe meltdowns. In this population, he found it was often best to avoid using antidepressant medications, and he used anticonvulsants instead, along with atypical antipsychotic medications and the beta-blocker propranolol, which is a blood pressure medication.
Here are some of the salient points I talk about when I speak to folks about starting medications:
1. A medication should have an obvious beneficial effect. When I began taking antidepressants, it was like, “Wow!” I’m a believer in biochemistry. The use of powerful antipsychotics, such as risperidone (Risperdal) or aripiprazole (Abilify), as sleep aids or to make a child a tiny bit less hyper is a bad idea, owing to the severe side effects. If the drug makes it possible to engage in more normal activities, however, then it can be worth the risk.
2. Try one thing at a time. Do not start a drug at the same time you start a new school or a special diet. Space them out by a few weeks, so you can see what works.
3. Do not increase the dose or add another medication every time there is a meltdown or a problem. Medication is only one tool in the toolbox for behavior problems. In most cases, one to three medications is usually sufficient to treat anxiety, depression, aggression, irritability, or an inability to stay on task. There are, of course, some exceptions, but this is a good, general rule.
4. Be careful when changing brands of generics. This is especially important with time-release products. Dosages may have to be changed when the drug is obtained from a different vendor.
5. Too many powerful medications are being given to very young children who are younger than 6 years. A good basic principle is to be more conservative with medications in very young children.
Abstraction: Considering something in general terms, apart from concrete realities.
ADHD: Attention-deficit/hyperactivity disorder, characterized by impulsivity, inattention, and, sometimes, physical hyperactivity.
Asperger’s syndrome: High-functioning autism, with no significant language delay and no significant cognitive delay.
Augmentation: To enlarge in extent or strength.
Autism spectrum disorders: A term applied to patients who exhibit (a) difficulties with social issues and language and (b) repetitive behaviors. The spectrum generally includes autism, Asperger’s syndrome, and pervasive developmental disorder—not otherwise specified (PDD-NOS).
Cognitive behavioral therapy: Psychotherapy that emphasizes the correction of distorted thinking associated with faulty self-perception or unrealistic expectations.
Co-morbid: Occurring at the same time, with a higher frequency than chance.
Dystonia: Involuntary muscle spasms that cause twisting of the body.
Echolalia: Immediate and uncontrollable repetition of words spoken by another person.
Impetus: Driving force.
Meltdown: A significant temper tantrum, usually precipitated by a transition or a denial.
Oppositional defiant disorder: A condition characterized by breaking rules and arguing with adults, parents, and peers.
Osmotic release: The movement of fluid across a semipermeable membrane within the drug capsule; causes a slow release of medication from the capsule.
Paradigm: An example that serves as a model.
Pedantic: An excessive or inappropriate display of learning.
PDD-NOS: Pervasive developmental disorder—not otherwise specified; an autism spectrum disorder with mild symptoms that does not meet the criteria for autism or Asperger’s syndrome.
Reciprocal: Given or felt by each other.
Regression: Reversion to an earlier or less advanced state.
Salient: Most obvious or conspicuous.
SSRI: Selective serotonin reuptake inhibitor; a type of medication that functions via this method.
Static condition: Stable; not improving or worsening.
Stereotypies: Repetitive movements, such as hand flapping, which seem to have little purpose or function to others.
I am a physician who specializes in behavioral pediatrics. I have been treating patients with autism spectrum disorders for more than 30 years. Some patients are mildly affected, and some severely affected. Most patients meet the criteria for a diagnosis on the autism spectrum somewhere between the two extremes. My patients have spanned the ages of 1 to 40 years. I wrote this book with the hopes of educating families who have a family member or members with an autism spectrum disorder and are involved in making decisions in their best interest.
I feel it would be helpful to families to have the information I’ve gathered on my understanding about why medication may improve symptoms. I also believe it is important for them to understand what the effects and side effects of medications are in patients with autism spectrum disorders. I am not the only physician who treats patients in the manner that will be described in this book. At meetings, I have found other physicians who seem to follow similar guidelines for treatment.
However, I have met with many families who had previously given medications a trial, did not obtain satisfactory results, and subsequently decided that medication wouldn’t work for that particular patient. In my experience, the poor results may have been a result of less than ideal medication management by the treating physician. This does not mean that the physician was of poor quality; it means that his or her knowledge of autism and the medications used to treat autism was less than ideal.
Indeed, even at an incidence rate of 1 in 100, each physician is going to encounter some patients with an autism spectrum disorder, but he or she isn’t going to treat enough patients with autism spectrum disorders to be highly capable when it comes to managing the subtle nuances of treatment.
My intention with this book is to explain my concepts about the use of medication to treat autism spectrum disorders, why medications might cause an adverse outcome, and what might be done to improve a patient’s results.
I am a pediatrician with a behavioral practice that is limited to the treatment of attention-deficit/hyperactivity disorder (ADHD), autism, Asperger’s syndrome, and their co-morbidities in patients ranging from young preschoolers to young adults.
I attended Indiana University for my undergraduate degree and subsequently attended Indiana University Medical School, where I graduated in 1969 with a Doctor of Medicine degree. I completed a residency in pediatrics at Riley Children’s Hospital, which is part of the Indiana University medical school complex of hospitals. I was chief resident of pediatrics during my final year.
For my pediatric residency, I had a very special mentor in Dr Morris Green, the head of the pediatric residency program at Riley Hospital. He was also a pioneer in behavioral pediatrics and coauthored one of the first books on pediatric behavioral disorders. Dr Green was a unique and qualified physician, who would infuse the concepts of normal and abnormal behaviors into daily clinical experience. I often saw cases presented to him that had been worked up by a competent medical student or pediatric resident. Dr Green was very good at taking in the clinical information, asking one or two more questions of the patient or the patient’s family, and coming up with a diagnosis that may not have even been considered. Dr Green greatly influenced my decision to be a physician who treats behavioral issues in children, adolescents, and young adults.
My first encounter with a patient who had autism was during my residency in pediatrics. He was an 8-year-old boy who was supposed to return to the Riley Hospital outpatient clinic twice a year because of a seizure disorder. Every year, his mother brought him in to the clinic. Each year he was attended to dutifully, usually by a physician doing his or her residency training, who likely hadn’t seen him previously, and his medications would be refilled. At that time, Riley Hospital was the only children’s hospital in Indiana.
On the day I met this boy, he was standing by the window, grunting and pointing at something in the parking lot. As I reviewed his chart, I noted that during previous visits, one or two physicians had recorded the fact that this child was nonverbal, but they had not scheduled him for an evaluation to assess his lack of language. I told the patient’s mother that I thought her son had an autism spectrum disorder.
I then advised her that there was a neurologist on campus who treated children with autism, and I scheduled an appointment for the patient to see her. However, on the day of his appointment, he was unable to get to the doctor’s office because of snow and the distance he and his family had to travel. When the autism clinic personnel reviewed this boy’s chart, they believed he only had a seizure disorder and refused to reschedule him.
Fortunately, I was able to intercede and get a new appointment scheduled. The family was able to attend the new appointment and get help for their child. At the time of my residency, there were not a lot of medications being used to treat patients with autism spectrum disorders. But, when I met with this 8-year-old boy, I believed it was an injustice to the family that no one had addressed an almost certain diagnosis of autism.
Then and now, I believe that whether a family decides to use or not use medications, knowledge of the disorder is important and helpful. When a family can understand why a certain behavior occurs, they are better able to deal with it.
I started out in a general pediatric practice in the early 1970s, and, very early in that practice, I began treating patients with ADHD. By the early 1980s, I was recognizing that some of the patients with symptoms of ADHD had milder forms of autism spectrum disorders. With the recognition of an amended diagnosis, I began prescribing medications for patients with autism spectrum disorders and the ADHD that went with them. I did not believe that I was an expert in autism spectrum disorders at that time, but I seemed to know more than most other physicians I encountered. I began reading and attending medical conferences concerning autism. Over the years, my patients and their families have taught me extensively about both the obvious and subtle aspects of autism spectrum disorders and the treatment of these disorders with medications.
It was early in my general pediatric practice when I met with my second patient with autism. The patient was a 9-year-old boy who had almost no language and was experiencing frequent “melt-downs.” At that time, I told the patient’s mother that his diagnosis was autism and that medical care had little to offer to help him. I sent them for counseling. I believe I was correct at that time, but I now devote a large portion of my practice to using medications to treat children and young adults with autism spectrum disorders, in an attempt to minimize their difficulties.
I have come to realize that my training in normative behavior did not begin in medical school, but began instead during my childhood. I have eight brothers and sisters. I am not saying that they are all “normal”—whatever that is—but, through many years of interactions with my siblings and their friends, I incurred a lot of unsolicited instruction in child and adolescent behavior.
I believe, and there is scientific evidence to support this concept, that ADHD and autism are genetic neurodevelopmental differences that have been around for generations. Over time, society and its rules have changed, which may have made these disorders more evident. Those societal changes may make it appear that there is an increased incidence of both ADHD and autism spectrum disorders.
When I was a child and I came home from school, I was simply sent out to play. Back then, there was no designated “play group” where your mother took you. You found your own group. I was a skinny kid, and not very athletic. There were, however, a lot more kids in the neighborhood to play with than there are now. The families who lived nearby were generally larger, and the children did not have electronic games to play that might keep them indoors. At the baseball games held in the vacant lot in our neighborhood, I was always the last one picked, but everyone always got picked, and there were no adults around to ensure that happened. I am not certain that things would go the same way today for my patients with autism spectrum disorders. I believe that today, many of my patients would be told by their peers to go elsewhere, rather than be included.
Children nowadays have significantly more information to learn than a child did in 1980. It can be as much as 30% more. Therefore, any learning difficulties that a student might have are more likely to interfere with his or her school performance. The increased academic load is likely to expose academic difficulties in students who have both ADHD and autism spectrum disorders.
I feel I was brought into the treatment of autism spectrum disorders in a reverse manner. My forte in my early years of practice was the treatment of ADHD. As I began to reevaluate patients who were not responding to their medications as well as I thought they should, I began to recognize that in some, the diagnosis of ADHD was incomplete. It was not really incorrect—they did indeed have ADHD—but it was not their entire issue. I began to see that these patients—especially those in whom the ADHD medication would be helpful for a while (perhaps 2 or 3 months) and then quit working—were more likely to have high-functioning autism or bipolar disorder, and their medications therefore needed to be altered. This unusual effect, where an ADHD medication works only for a short while, is consistent enough that, when seen, it can be used to help assign a diagnosis of an autism spectrum disorder.
In 1996, I made the decision to quit practicing general pediatrics. Since that time, I only treat patients with autism spectrum disorders, ADHD, and the co-morbidities that occur with those disorders. Most of my patients are from a wide area of Indiana and the surrounding states, but, over the years, I have had a few who have come from a greater distance.
I believe that my 24 years of general pediatrics has been invaluable in teaching me about normative behavior for each age level, as well as where the limits of that normal behavior might be. There will always be discussions among parents and professionals about what behavior is “normal.” The demarcation lines of normal behavior are fuzzy, rather than sharp. For example, a short attention span is normal and accepted in a 1- or 2-year-old, but not in a third-grade student.
When I treat a patient, especially one with an autism spectrum disorder, my goal is to try to modify behaviors, so that most individuals the patient encounters do not know the patient has any problems at all. This may end up being impossible to accomplish, but it is always a goal.
Several years ago, I was treating a 14-year-old girl who had Asperger’s syndrome. After she started taking her medication, she skipped out on a class in high school. I was pleased. Her mother wasn’t. My understanding of that situation was that the medication had lowered her anxiety level about getting into trouble, and she had skipped class to be with her friends—which many of her normally developing classmates might also have done. Her mother was upset that she violated the school rules, which her daughter had been extremely reluctant to do in the past. Her behavior had broken a school rule, but, it meant she had tried a social behavior that was normal for her age.
Many patients with Asperger’s syndrome have difficulty making and keeping friends, which is partially due to their rigidity about rules and anxiety about breaking those rules. If the patient can be more adaptable about rules, and not so black and white in his thinking, he may be included in social situations more often.
If a family is in a store and has a child with a problem that is obvious to others, such as Down syndrome, and the child misbehaves, most people feel sorry for the parents. But, if you have a child that appears outwardly normal, as most children with an autism spectrum disorder do, when he misbehaves, other people’s behavior indicates they think he has bad or incapable parents. I had one mother who was so upset about the glares she got from others when she was out in public with her son that she had a t-shirt made that read, “He has autism—that’s why he’s acting this way!”
A major factor in improving behavior, especially with medication, is to assign the correct or nearly correct diagnosis. Some diagnoses cannot be assigned at the first visit to the doctor and are evolving diagnoses. As I stated previously, an individual’s response to medication may be helpful in leading to the correct diagnosis or diagnoses. I believe that if the response to medication does not improve the patient’s symptoms the way it is expected to, it is usually one of the three “D”s: wrong drug, wrong dose, or wrong diagnosis.
In this book, I am going to try to inform you about the different types of autism. I will include some of the causes of behavioral, social, and learning difficulties that patients with an autism spectrum disorder experience, the medications I might use for each one, and why. I will discuss what types of symptoms may not be susceptible to medications, at least at this time. Further, I will discuss what may be causing difficulties at school and what can be assessed to improve the likelihood of eventual employment.
As I discuss patients, I will use the pronoun “he” most often, rather than repeatedly using “he” and “she.” This will simplify your reading. It is currently believed that autism spectrum disorders occur at an incidence rate of four times higher in males versus females. This ratio may come closer to three to one or two to one in the future, as milder cases are diagnosed, but for now, autism spectrum disorders are much more commonly diagnosed in males.