It's Nobody's Fault (40 page)

Regardless of the severity of the disorder, all kids with PDD have serious impairments in several areas of development, especially language and
communications skills and social interactions. Sometimes physical coordination will be impaired and the child will exhibit strange behavior. The development may be uneven—a child will be strong in one area and very weak in another—but overall these kids are weak in many spheres of development. That’s what makes this disorder
pervasive.
Reports indicate that approximately 1 percent of the population has PDD; most people with PDD are diagnosed after the age of three.

Autism is a very rare disorder (it occurs about five times in every 10,000 live births, with a boy-girl ratio of 4 to 1) but widely studied. Some say that there are more people doing research on autism than there are people who
have
the disorder. People, not just psychiatrists and medical researchers, seem to be fascinated by this bizarre, inexplicable disease. Television shows and movies are filled with characters who have autism: a doctor’s son on
St. Elsewhere
, a victim on
Law and Order
, and, of course, the movie
Rain Man.
Most of them don’t exactly conform to the facts of the disease, but the true symptoms of autism don’t always make for good theater.

Autism is a congenital disorder—that is, a child is born with it—characterized by severe impairment in the areas related to communication, social interaction, and the ability to use play and abstract thinking. The essence of autism is a lack of interest in people and a failure to appreciate and make use of the nuances of social interplay. Kids with autism don’t respond to the subtle social cues that are obvious to most youngsters. A child with autism will know when his parents are
very
angry or
very
happy, for example, but he’s not able to detect anything in between. The difference between a grimace and a friendly smile of greeting will be lost on him, and voice inflections will mean little or nothing. Children with autism understand black and white, but they don’t usually understand gray. Subtleties are wasted on them.

Language deficits are a major component of this disorder. Only half of all children with autism will develop functional speech. Children with autism commonly have echolalia, which is the repeating of the words or phrases they have heard. They misuse pronouns and invent new words. The tone, pitch, accent, and cadence of their speech are abnormal. They have trouble
sequencing
(putting a story in order so that it makes sense) and
encoding
(storing information that has an emotional component). About 75 percent of all children with autism are also mentally retarded to some degree. The key difference between Asperger’s disorder and other types of pervasive developmental disorder is language acquisition.
Kids with Asperger’s disorder have no significant delay in language: they have less echolalia and fewer pronoun reversals, and therefore initially may often not be identified as having a problem.

Children with autism may have strengths, though, especially in such skills as putting together puzzles or constructing objects. A very small number of people with autism—the Dustin Hoffman character in the movie
Rain Man
, for instance, who was fantastic with numbers and had memorized all the statistics about airline accidents—have phenomenal abilities in particular areas, such as memory, calendar calculations, and art.

Many kids with PDD and especially autism have attentional problems and exhibit repetitive behaviors. They may also be impulsive and hyperactive, often to the point of being self-destructive. I once treated a 14-year-old boy who would pick at his own skin until it bled. He’d also bang his head and his legs against brick walls until he’d break a bone or knock himself unconscious.

When PDD is suspected, we concentrate on getting as much information as possible about a child’s history, his behavior, and his abilities, looking to parents, teachers, and anyone else who has spent time with the child. Long-term baby-sitters, grandparents, and other relatives can sometimes be very valuable historians. In taking a history we pay special attention to delays and deviations from normal development, especially in the child’s acquisition and use of language and his social interactions. We check the family medical history, looking for language or social communication difficulties, a neurological disease or psychiatric disorders, particularly PDD or autism. The child’s pediatrician does a complete physical, including a neurological examination. Psychological testing can help in the diagnosis by giving us an assessment of the child’s social skills, language skills, and intelligence. Children with PDD will have higher performance scores than verbal scores. Because of their relatively normal language development, kids with Asperger’s disorder are diagnosed later than children with autism or PDD.

An official diagnosis of autism is rarely made until a child is 18 months old, but often the disorder can be detected much earlier. Autism
can appear from birth all the way up to 30 months. Babies with autism don’t make eye contact and don’t even want to be held. Even in the crib they may show a tendency toward repetitive actions. Other children will be fine in infancy but will start to show signs of autism later. Typically, they don’t pick up language when they should. At age three or four children with autism will have significant delays in all developmental areas, especially language. They’ll be unable to make distinctions between people and objects in their environment, and they won’t get or give pleasure during social interactions.

What may at first seem like autism in a child may be developmental language delay; language problems often lead to problems in communication and in some social interaction. However, children with language delay, unlike those with autism, engage in imaginative play and usually have normal social interactions with their family and friends. They don’t exhibit the same abnormal patterns of language as those typical among children with autism.

PDD is a complex disorder that probably involves variations in the structure of the brain; that is, the brain was not put together correctly, so there are some chemical abnormalities, ones that will probably never be repaired. As I mentioned earlier, there have been many studies of autism, so most of the information we have about the causes of PDD have to do with its most severe form.

Twin studies support the belief that autism is genetic; the concordance rate of the disorder is 91 percent in identical twins and 0 percent in fraternal twins. Family studies reveal that if one child in a family has autism, the likelihood that his brother or sister will have the disorder is increased. Studies of the brains of children with autism indicate that there is something wrong with how the brain processes certain information, especially sounds and language. Neuroimaging techniques and autopsies show that there are abnormalities in the cerebellum.

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.

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.