THE TREATMENT
Here’s how one mother describes the treatment that Jacob, her 10-year-old child with PDD, is undergoing. “He’s on Dexedrine, a little bit in the morning for his attention span. He’s on Depakote twice a day for his irritability and impulsivity. He takes Paxil every night and Xanax when he needs it for anxiety.
“He sees a speech therapist who also does NDT—neurological developmental therapy. He really needs help with his articulation. He’s a lot better than he used to be, but the kids still make fun of him. A few months ago he saw a behavioral therapist, and she helped him get a little more organized. I’d been trying to get him to clean up his act around here, but I wasn’t getting anywhere. She made a chart with a list of things he has to do around the house. Every time he does his chores, he gets a star. When he does his homework right after school, he gets a star. She worked on table manners with him too. Eating properly is hard for him because he’s so uncoordinated, but they practiced, and she figured out a reward system for dinnertime too. He trades in his stars for time playing Sega, which he loves.
“He goes to group therapy too, so he can practice his social skills. He’s learning how to talk to people if he goes someplace new. He’s also learning how to handle the teasing he gets at school. Kids who are different get positively brutalized by the other kids. Jacob is learning concrete ways to defuse what they say and when to ignore it. He’s learning specifically what to say and do when this happens. They don’t do theory there. They rehearse and practice, with role playing and everything. Group therapy has been great for Jacob.”
I’ve offered up the details of one boy’s treatment package not because Jacob’s treatment is right for every child with PDD but because it illustrates two important facts about any treatment for PDD. The first is that we don’t cure PDD; there is as yet no cure. We just fix as many symptoms of the disorder as possible and help a child to reach the highest level he is able to achieve. The second is that with PDD we take a multidisciplinary approach to treatment, going at the disorder with every weapon in the arsenal. When a child has PDD, careful attention must be paid to his placement in school. Some high-functioning children with PDD may be better off in a regular classroom, with normal intellectual stimulation and a garden-variety social life, than in a highly structured class filled with other children who have PDD. In all likelihood these kids will need additional attention outside of school, however. Speech therapy, language therapy, occupational therapy—any or all of these may be called for. Lower-functioning children with PDD will need the resources that special education offers, especially speech arid language therapy. The primary goal of a child with autism is to learn to communicate. We try to get him to speak and use language. If he can’t speak, we encourage him to write or use sign language or rely on visual cues. Communication is vital, and there’s more than one way to communicate. Once a child can communicate, he’s in a position to learn a variety of other skills, especially those associated with social interaction.
Behavioral therapy has been helpful in decreasing the negative behavior associated with PDD. Parents who learn behavior modification techniques can help the process along. Parent counseling is also an invaluable component of the PDD treatment package. Parents of children with PDD may benefit greatly from the company of others who are in the same predicament, who can offer information, support services, and a pat on the back when it’s most needed. The Autism Society of America (see Appendix 2) provides these and other services.
Medication is nearly always recommended in the treatment of PDD and autism, not because it eliminates the core deficits that these children have but because it treats symptoms that interfere with their ability to function. Prozac, Zoloft, and Luvox increase a child’s ability to relate socially, decrease repetitive thoughts, and lower aggression. One 16-year-old boy I treated for autism showed marked improvement on Luvox; he stopped banging his head against the wall of his bedroom, started participating in a day treatment program, and—perhaps most remarkably—signed a beautiful Mother’s Day card for his mom.
Psychostimulants, such as Ritalin and Dexedrine, are used to treat the attentional problems and hyperactivity associated with PDD and autism. Once their attention span has been increased, kids with PDD are more receptive to other interventions, such as behavior modification and language therapy. These kids can be very sensitive to medication, so we start with low doses. Catapres, an antihypertensive agent, has been used to decrease irritability, hyperactivity, and impulsivity. The most common side effect of Catapres is sedation. Depakote helps the irritability, insomnia and hyperactivity that are seen in certain children with PDD and autism. The side effects of Depakote, which are infrequent, are stomachaches, increased appetite, and drowsiness.
The child with autism may improve over time—50 percent of children who are mute in preschool eventually do speak, and some learn to play near other children—but autism cannot be cured. The best thing we can do for these kids is to help them learn how to work around these deficits and even use them to their advantage in their daily life.
PARENTING AND PDD
There was a time not long ago when parents of kids with autism had an additional burden: being blamed for their child’s disease. The thinking was that mothers who were cold to their babies caused them to have autism; it was called the “refrigerator mom” theory. At least parents today don’t have to suffer the agony of that guilt. Now we know that parents don’t cause autism. In fact, they can’t cause the disorder. We have seen children who have been horribly abused, neglected, mistreated, and misunderstood, and they don’t develop autism any more than the general population. No matter how bad a job parents do, they can’t create this disorder. Unfortunately, no matter how good a job they do, they can’t cure it either. Parents of these kids often search for a cure and therefore are very susceptible to unorthodox and unproven treatment recommendations. These treatments are not only ineffective but can at times increase financial, parental, and family stress.
Children with autism don’t do many of the things that make babies and children lovable and emotionally rewarding. They don’t coo or smile or curl up in Dad’s lap. They’re not affectionate; they don’t cuddle or light up when they see Mom come home from work. They rarely make connections with anyone, not even their parents. It’s not surprising, then, that the parents of kids with autism become very demoralized. On an intellectual level parents may understand that their child has a devastating brain disorder, but the reality that they might never be hugged or kissed by their own child is something they find much harder to accept.
Faced with the bizarre, often unpleasant behavior of a child with autism, many parents lose patience with their situation, and it’s not unusual to see friction in the household. In the typical scenario the mother of a child who has autism is the “good cop”; she lets the child go through his rituals without making a fuss. Dad is usually more strict and angry—the “bad cop.” For instance, one little boy I treated liked to play with the VCR, popping a video in, hitting the Eject button, then popping the video back in again. He could do this for hours. The VCR game enraged the father, and he took his anger out on Mom.
“Why do you let him do that?” he shouted.
“He’s not hurting anyone, and it keeps him occupied,” answers the mother, who had been following the little boy around all day. “I need a break.”
Now Dad is even more frustrated and angry. “But he’s acting crazy! Can’t you get him to stop?”
Anger, frustration, sadness—all of these feelings are common in parents whose children have a serious brain disorder, and this is why I tell parents that it’s essential to take a break now and again. Parents cannot and should not be caretakers all of the time, even when circumstances demand their constant attention. They have to take time out once in a while to be alone together as husband and wife. I highly recommend an evening out on a regular basis. If parents can spend the night away from home, so much the better. Treating PDD and autism is a m
arathon, not a sprint, and parents must conserve their emotional resources so that they’ll be able to go the distance. That’s the only way they’ll be able to maintain the energy to see that a child gets the treatment he needs.
There’s one final thing that a child with pervasive developmental disorder sorely needs, and that’s a cheerleader, someone who will encourage him to stop thinking about what he can’t do and feel good about what he can do. Jacob’s mother describes what I mean.
“My main goal is to make him feel as good about himself as possible, because if he feels good, all the speech therapy and the other stuff is going to work better. He has to meet us, maybe not halfway but somewhere. I don’t let him get down. I won’t let him lie in bed and get depressed; I rip him out of bed and make him do something. The hardest thing for me about this whole disease is getting him to accept himself, to see that he is a good person. I want him to know that he’s worth something.
“Last summer he took a giant step forward. We finally found the perfect camp for Jacob. He wasn’t the highest achiever there, but he wasn’t the lowest either. He was involved in all sorts of activities, and he made a lot of friends, and his letters were full of great things he was doing. He had never said those kinds of things before. When we went for Parents’ Day, I could see from a distance how happy he was. He walked up to us and didn’t even say hello. He just said, ‘I’m coming back here next summer!’ I think that was one of the best days of my life.”
Afterword
“WORKING WITH SICK kids every day must be really sad. Doesn’t it get to you?” Hardly a day goes by that I don’t hear that question. I certainly understand what makes people ask it of someone in my line of work. Of course, it is sad, very sad, to see children in pain. Seeing any living thing experience distress and dysfunction—we’re back to those two D’s again—is upsetting. When the distress and dysfunction belong to a child and the treatments don’t work, it can be heartbreaking. I’m a father as well as a doctor, so I know full well that the troubled children I treat every day could just as easily be one of my own three sons.
Nearly 20 years ago, when I decided to become a child and adolescent psychiatrist, I thought that I’d be able to help certain kids have an easier time growing up. I guess I saw myself as the Judd Hirsch character from Ordinary People, the wise, kindly, hip psychiatrist whose very special relationship with a teenager helped the boy get through a difficult period in his life. I didn’t know then that the field I chose was about to take a giant leap forward, that I was going to do a lot more than help children and adolescents cope with their troubles. The progress that has been made in our understanding of the brain’s involvement in children’s psychiatric disorders and the use of medication has meant that my colleagues and I have been able to change, and sometimes even save, the lives of young people, just like neurosurgeons and cardiologists. I ended up getting a lot more than I bargained for.
So I tell people no, my job isn’t sad and most times it doesn’t get to me, because I know there’s almost always something I can do to make a child’s pain go away. I can relieve the suffering of his or her parents as well, first by reassuring them that what’s wrong with their child is not their fault and then by telling them how we can make the child better. I hope I’ve gotten that message through loud and clear in these pages.
I’m in the business of helping troubled children live normal, happy, productive lives, and there’s nothing sad or dispiriting about that. On the contrary: working with sick kids every day is a joy. I hope you find the same joy bringing out the best in your child.
APPENDIX 1
A Definition of Terms
WHAT FOLLOWS is a list of some of the terms used frequently in It’s Nobody’s Fault. I describe them here not as they are defined in textbooks or medical dictionaries but as they apply to the field of child and adolescent psychiatry and suit the purposes of this book.
BEHAVIORAL THERAPY. A goal-oriented approach based on the principle that all behavior is learned and that undesirable behavior can be unlearned through training. The focus is on the here and now, on figuring out how to change behavior, not on finding out why the child feels or behaves a certain way.
BEHAVIOR MODIFICATION. The core of behavioral therapy, this is the therapeutic approach by which undesirable behavior is “unlearned” and replaced by different, more desirable behavior. Positive and negative reinforcement play an important part in behavior modification. A system of rewards and mild punishments (usually loss of privileges) can be a big help in motivating a child to change the way he reacts to a given situation. The role of parents is extremely important in behavior modification.
CAT. Computed Axial Tomography. This is an advanced form of X-ray that permits us to look at structures of the brain.
CO-MORBIDITY. A situation in which a person is diagnosed with two or more disorders at the same time. One disorder is said to be co-morbid with another. Co-morbidity is extremely common in the brain disorders of children and adolescents. Few of these disorders are completely “clean.”
COGNITIVE. Having to do with thinking. Cognitive functions include remembering, understanding, judging, and reasoning. Cognitive behavioral therapy requires an ability to talk about your own thoughts and feelings, so it is more likely to be effective for older children than it is in the treatment of the very young.
CONCORDANCE. This term, which is usually used in genetics, refers to the similarity in twins with respect to the presence or absence of a disease or a trait. Higher concordance rates in identical twins than in fraternal twins indicate that there is a genetic component to that disease. Twin studies of the brain disorders in these pages all show a higher concordance rate in identical twins than in fraternal twins.
DNA. Deoxyribonucleic acid. The stuff of which genes are made. DNA is largely responsible for the transmission of inherited characteristics, including brain chemistry.
DISINHIBITION. An increase in hostility, aggressiveness, irritability, and impulsivity. This reaction can be caused by certain antianxiety agents, specifically the benzodiazepines. This side effect usually disappears when the dose is lowered and always disappears when the medicine is discontinued.
EEG. Electroencephalogram. This is a graphic depiction of the brain’s electrical impulses. Since 1929 the EEG has been used to detect the presence of brain malfunctions, including the seizures associated with epilepsy.
FAMILY THERAPY. Psychotherapy in which problems are understood and treated in the family. How a child’s disorder affects all the members of the family and how the family affects the child are addressed. The goal of family therapy is to bring about a change in the way family members interact. Unlike parent counseling, where a therapist advises the parents, family therapy requires the cooperation of the entire family to make changes and find solutions.
INTELLIGENCE. A person’s ability to learn and to understand and process information for problem solving. An intelligence test is used to measure those aspects of mental development that are relevant for academic achievement. A person’s IQ—his intelligence quotient—rates his intellectual ability, according to verbal skills and performance skills.
MRI. Magnetic resonance imaging. MRI is a neuroimaging technique that uses magnetic fields instead of radiation and allows us to examine the structure of the brain, especially the existence of tumors, vascular malfunctions, and brain deterioration.
NEUROANATOMY. The structures that compose the brain and the nervous system.
NEUROIMAGING TECHNIQUES. Techniques that provide data on brain activity and function. As far as the brain disorders of children and adolescents are concerned, these techniques are useful not for the purposes of diagnosis but for increased knowledge of how the brain functions and how it reacts to medication, among other things. Some of the most commonly used neuroimaging techniques are MRIs, PET and CAT scans, and SPECT.
PARENT COUNSELING. A therapeutic approach in which parents are educated about their child’s brain disorder and given information and
advice on general issues and on the specific problem they may be having with the behavior of their child.
PARENT TRAINING. This is a systematic goal-oriented process in which parents are taught, quite specifically, how to manage the behavior of their troubled child by means of positive and negative reinforcement. For instance, parents might be taught how to encourage alternatives to such negative behaviors as temper tantrums, aggressiveness, and destructiveness. This technique is used for children of all ages; but it is especially appropriate for parents of young children.
PERFORMANCE ANXIETY. The apprehension and nervousness that come before an event requiring the demonstration of a child’s or adolescent’s abilities—a test, piano recital, oral report, and so on. Simple performance anxiety, which is a perfectly normal response, does not negatively effect the youngster’s performance. Pathological performance anxiety, which is not normal, does impair a child’s ability to perform.
PET SCAN. PET stands for positron emission tomography. This neuroimaging technique produces images of the brain’s activity as a patient is directed to complete specific tasks, such as reading or naming objects. Measurement of brain metabolism with the use of PET scans has been helpful in identifying differences in the brains of adults with specific brain disorders and showing us how the brain responds to various medications.
PSYCHOTHERAPY. The treatment of mental or emotional disorders by psychological means, usually involving communication between patient and therapist. Psychotherapy may involve individuals, families, or groups, and there are many different methods employed to bring about change.
PSYCHOTIC. This term describes someone whose ability to distinguish what is real from what is not real is impaired. A person who is psychotic creates his own “reality”; he may have delusions and hallucinations. Faced with concrete evidence that what he believes is true is not true, he stays with his own version. (See reality testing)
It's Nobody's Fault Page 30
