Thinking in Pictures: My Life with Autism (21 page)

I am still taking the same low dose of Norpramin (desipramine) antidepressant. I have been on this drug for twenty-five years. Reports from parents indicate that switching an individual who is stable on an old drug to something different sometimes has bad results. If the individual is doing well and is stable on a reasonable dose of something old, it may be best to keep taking it. My old drug is probably not a good first choice for a new patient but it is working well for me. I forgot to take it one time for three days and I felt depressed. Unfortunately drug studies in most scientific papers are short-term studies of a few months. So when a new drug is marketed, little is known about long-term risks. There are almost no studies on long-term patients like me and I do not dare stop taking the drug. I have seen too many disasters when a person who was stable stopped taking their medication.

Atypical Antipsychotics

The atypical class of medications was not available when I wrote
Thinking in Pictures
. Treatment of schizophrenia was the original reason these drugs were developed. Atypicals work on both the serotonin system and the dopamine system in the brain. The main use of these drugs for individuals on the autism spectrum is to control rage in teenagers and adults. In some cases, they may be given to older children. Dr. Christopher McDougal at Indiana University School of Medicine uses atypicals for severe cases of self-injury, but Dr. Max Witznitzer reports success with treating self-injury with naltrexone. The five atypical medications that were available when this update was written are Risperdal (risperidone), Zyprexa (olanzapine), Geodon (ziprasidone), Seroquel (quetiapine fumerate), and Abilify (aripiprazole).

Risperdal was one of the first atypicals that was developed. Scientific studies show that it is a very effective drug for severe rage and aggression in older children and adults with autism. Compared to other medications such as Prozac, Zoloft, beta-blockers or Naltrexone, atypical drugs have
severe
long-term side effects. Since they have greater risks, a greater benefit is required to make them worth the risk.

There are reports in the scientific literature that tardive dyskinesia (a Parkinson's-like condition) has occurred in some individuals who take Risperdal. Weight gain is another major serious side effect of Risperdal and Zyprexa because they stimulate appetite. Some individuals have gained over one hundred pounds and the drugs may also increase the risk of getting diabetes. Seroquel and Geodon cause less weight gain and they can be substituted for Risperdal. However, Dr. McDougal reports that Seroquel may be less effective than Risperdal for controlling rage.

Side effects can be reduced by using very low doses of the atypicals. These doses may be lower than the starter doses recommended on the label. Dr. Joe Huggins uses low doses of less than 2 mg per day of Risperdal. Dr. Bennett Leventhal, a Chicago autism specialist, states that he uses very low doses of Abilify. He says it works like two different drugs depending on the dose. He recommends using low doses. The pharmaceutical companies have also developed medications that combine an SSRI with an atypical. Some autism specialists do not recommend these combination drugs and state that it is better to use the two agents separately.

Black Box Warnings

The Food and Drug Administration has placed “black box” warnings on drugs that may have greater risks. Many drugs have these “black box” warnings but very careful monitoring reduces risks. Dr. Michelle Riba and Dr. Steven Sharfstein, past presidents of the American Psychiatric Association, are deeply concerned that the black box warning label on SSRI and tricyclic antidepressants that warn of suicidal thoughts in children and adolescents “may have a chilling effect on appropriate prescriptions for patients.” They are concerned that individuals who need these drugs will not get them. An article in
Science
indicates that doses that are too high may be the cause of some of the problems with suicidal thoughts. Some patients reported they felt like they were jumping out of their skin. Dr. Martin Teachers of McLean Hospital in Boston states some of the doses of SSRIs were too high. The slight increase in suicidal thinking may occur during the first few weeks when the correct antidepressant dose is being determined. The risks of suicidal thinking are low. Paxil (paroxetine) may be associated with greater risks. The last two sentences of the Food and Drug Administration's black box warning reads, “The average risks of such events in patients receiving antidepressants was 4 percent, twice the placebo risk of 2 percent. No suicides occurred in these trials.” Trials were conducted on 4,400 patients. However, risks from atypicals, such as weight gain and tardive dyskinesia, may worsen the longer the individual is on the drug. Problems with antidepressants usually occur during the first few weeks and then the risk is reduced. Compared to antidepressants, atypicals have more serious long-term risks.

It is important to read the actual wording in a black box warning in order to make a wise decision. Many things have risks. Both cars and stairs are dangerous, but we use them every day.Nothing is risk-free. My old antidepressant now has a black box warning and I am going to continue to take it.

ADHD and Asperger's

Some individual with Asperger's may also receive a diagnosis of Attention Deficit Hyperactivity Disorder. Some Asperger individuals have good results with stimulant drugs such as Ritalin. With high-functioning people with either autism or Asperger's, stimulants or other ADHD drugs may have either a beneficial effect or a really bad effect. A person with autism who works in the computer industry has found that Prozac and Ritalin have been effective. However, individuals on the lower end of the autism spectrum often have bad results with ADHD medications. Stimulants must be used very cautiously in individuals with possible heart (cardiac) abnormalities. The long-acting formulations of stimulants may have greater risks. Parents have told me that in some children, switching to a long acting formulation caused problems.

Medications for Nonverbal Adults

Dr. Joe Huggins treats the most difficult low-functioning cases, people who have been thrown out of sheltered workshops or group homes due to rage or self-abuse. For this population, Dr. Huggins avoids the SSRIs such as Prozac and uses Risperdal, beta-blockers, and the anticonvulsant valproic acid. He uses Risperdal to control rage and keeps the dose under 2 mg per day. The anticonvulsant valproic acid is used to control aggression that occurs randomly and Risperdal works best for rage that is directed at people. Valproic acid controls rages that are caused by tiny seizures. If rage attacks that are not related to a specific place, person,or task occur, try valproic acid. Anticonvulsants such as valproic acid have to be given at the regular high adult dose. Valproic acid and some of the older anticonvulsants have a severe black box warning about liver and blood damage. Blood tests
must
be done to monitor for problems so that the drug can be stopped before permanent damage occurs. Problems are most likely to occur in the first six months and then the risk is reduced. Newer anticonvulsants are safer and can be used as a substitute but it may be less effective. However, Dr. Huggins has found that valproic acid is a very effective medication. Research has also shown that a similar drug called Depakote (divalproex) is effective for controlling explosive temper.

Dr. Huggins recommends beta-blockers such as propranolol for hot and sweaty undirected rage. The individual may sound out of breath and the rage is often not directed at a particular person. Dr. Max Wiznitzer calls beta-blockers underappreciated drugs that can be useful. They must not be used in people who have asthma.

Diet and Vitamin Supplements for Autism

Discussion with many parents has indicated that the casein (dairy) free and gluten (wheat) free diet has improved language and reduced behavior problems in some children and adults. The best results often occur in children who appear normal and then regress at eighteen to twenty-four months and lose language. A very simple but strict dairy- and gluten-free diet would consist of rice, potatoes, beef, chicken, fish, pork, eggs, fruits, and vegetables. Olive oil can be substituted for butter. In the beginning it is best to use all fresh, unprocessed meats and produce. Soy products must be avoided and drinks loaded with sugar should be reduced. If the diet is going to work, the good effects should become apparent within two to four weeks. Individuals who stay on this diet must take vitamins and calcium supplements. If the diet works, there are special casein- and gluten-free breads and cookies that will add variety. Dr. Max Wiznitzer stated that parents have reported that the supplement DMG appeared to have beneficial results. Studies conducted in Norway by Dr. Knivsbreg and his colleagues indicated that the diet was helpful. Children on the spectrum are highly variable. Treatments such as the diet may really help one child and have little effect on others. The highly variable symptoms in individuals with autism make valid scientific studies difficult because some individuals will respond to the diet while others do not. In very young children age two to six, it may be better to avoid drugs and try the diet and some of the vitamin supplements first. Some children have good responses from some of the nutritional supplements which provide omega-3 fatty acids. One study showed that fish oil and evening primrose supplements reduced ADHD symptoms and improved both reading and spelling in children. More information is available from the Autism Research Institute in San Diego, California. Gastrointestinal problems are more common in autistic compared to normal children. Autistic children who have these problems should be treated by a specialist.

Choosing Treatments

People often get into arguments about alternative versus conventional treatments. Sometimes a combination works best. Donna Williams has found that a tiny ¼ mg-per-day dose of Risperdal combined with the casein- and gluten-free diet worked better than either thing by itself. Prior to taking the Risperdal, she was unable to attend meetings in a large convention center due to sensory overload. In another adult, Zoloft combined with a gluten-free diet has reduced both headaches and sensory sensitivity problems. For both conventional medications and nutritional/biomedical approaches, avoid making the mistake of taking too many things. Adding more and more medications or supplements is a mistake and the risks of harmful interactions increase. Use careful logical evaluation to find the items that work and to stop using things that do not work.

7
D
ATING
D
ATA

Autism and Relationships

MANY PEOPLE with autism are fans of the television show
Star Trek
. I have been a fan since the show started. When I was in college, it greatly influenced my thinking, as each episode of the original series had a moral point. The characters had a set of firm moral principles to follow, which came from the United Federation of Planets. I strongly identified with the logical Mr. Spock, since I completely related to his way of thinking.

I vividly remember one old episode because it portrayed a conflict between logic and emotion in a manner I could understand. A monster was attempting to smash the shuttle craft with rocks. A crew member had been killed. Logical Mr. Spock wanted to take off and escape before the monster wrecked the craft. The other crew members refused to leave until they had retrieved the body of the dead crew member. To Spock, it made no sense to rescue a dead body when the shuttle was being battered to pieces. But the feeling of attachment drove the others to retrieve the body so their fellow crew member could have a proper funeral. It may sound simplistic, but this episode helped me finally understand how I was different. I agreed with Spock, but I learned that emotions will often overpower logical thinking, even if these decisions prove hazardous.

Social interactions that come naturally to most people can be daunting for people with autism. As a child, I was like an animal that had no instincts to guide me; I just had to learn by trial and error. I was always observing, trying to work out the best way to behave, but I never fit in. I had to think about every social interaction. When other students swooned over the Beatles, I called their reaction an ISP—interesting sociological phenomenon. I was a scientist trying to figure out the ways of the natives. I wanted to participate, but I did not know how.

In my high school diary I wrote: “One should not always be a watcher—the cold impersonal observer—but instead should participate.” Even today, my thinking is from the vantage point of an observer. I did not realize that this was different until two years ago, when I took a test in which a piece of classical music evoked vivid images in my imagination. My images were similar to other people's, but I always imagined them as an observer. Most people see themselves participating in their images. For instance, one musical passage evoked the image of a boat floating on a sparkling sea. My imagery was like a postcard photograph, whereas most other people imagined themselves on the boat.

All my life I have been an observer, and I have always felt like someone who watches from the outside. I could not participate in the social interactions of high school life. First of all, I could not understand why clothes were so important when there were much more interesting things to think about and do in the science lab. Electronics and experimental psychology were much more intriguing than clothes. My peers spent hours standing around talking about jewelry or some other topic with no real substance. What did they get out of this? I just did not fit in. I never fit in with the crowd, but I had a few friends who were interested in the same things, such as skiing and riding horses. Friendship always revolved around what I did rather than who I was.

Even today, personal relationships are something I don't really understand. And I still consider sex to be the biggest, most important “sin of the system,” to use my old high school term. It has caused the downfall of many reputations and careers. From reading books and talking to people at conventions, I have learned that the autistic people who adapt most successfully in personal relationships either choose celibacy or marry a person with similar disabilities. By successful adaptation, I mean being able to lead a productive, satisfying life. Marriages work out best when two people with autism marry or when a person with autism marries a handicapped or eccentric spouse. The two partners get together because they have similar interests, not because of physical attraction. They are attracted because their intellects work on a similar wavelength.

I've remained celibate because doing so helps me to avoid the many complicated social situations that are too difficult for me to handle. For most people with autism, physical closeness is as much a problem as not understanding basic social behaviors. At conventions I have talked to several women who were raped on dates because they did not understand the subtle cues of sexual interest. Likewise, men who want to date often don't understand how to relate to a woman. They remind me of Data, the android on
Star Trek
. In one episode, Data's attempts at dating were a disaster. When he tried to be romantic, he complimented his date by using scientific terminology. Even very able adults with autism have such problems.

In
News from the Border
, Paul McDonnell describes an experience with dating, explaining that “things were going fine between us until I started being obsessed with seeing her very often.” Paul realized that he was pushing the woman to spend more and more time with him when she just wanted to be friends. He was not able to recognize that his girlfriend didn't want constant togetherness. Autistic adults with more rigid thinking have even worse problems when they attempt to date. They have no idea of appropriate behavior. One young man became interested in a girl and went to her house wearing a football helmet to disguise himself. He thought that it would be all right to look in her windows. In his literal, visual mind he thought that since he would not be recognized, it was okay to stand outside and watch for her.

Although business relationships can easily be learned by rote, dating is difficult. The social skills one needs to rent an apartment and keep a job were easier for me to learn than the social skills for dating, because I have very few emotional cues to guide me during complex social interactions. After one of my lectures, I received a totally inappropriate Valentine from a young man with autism. It was the kind of Valentine that third-graders give to each other. He expected me to consider it as a serious proposal and was disappointed when I ignored him. I did not write back, because I have learned from experience that responding to this kind of mail just encourages it. His teachers need to explain to him that making a proposal to someone you have just met is not acceptable. Like me, he has to be taught the rules of social interaction just as he is taught spelling. When I have to deal with family relationships, when people are responding to each other with emotion rather than intellect, I need to have long discussions with friends who can serve as translators. I need help in understanding social behavior that is driven by complex feelings rather than logic.

Hans Asperger stated that normal children acquire social skills without being consciously aware because they learn by instinct. In people with autism, “Social adaptation has to proceed via intellect.” Jim, the twenty-seven-year-old autistic graduate student I have mentioned in previous chapters, made a similar observation. He stated that people with autism lack the basic instincts that make communication a natural process. Autistic children have to learn social skills systematically, the same way they learn their school lessons. Jim Sinclair summed it up when he said, “Social interactions involve things that most people know without having to learn them.” He himself had to ask many detailed questions about experiences other people were having to figure out how to respond appropriately. He describes how he had to work out a “separate translation code” for every new person. Similarly,Tony W had an intellectual awareness of how other people felt, but he did not experience those feelings himself Donna Williams described how she copied emotions so that she acted normal, but it was a purely mechanical process, like retrieving files from a computer.

I do not read subtle emotional cues. I have had to learn by trial and error what certain gestures and facial expressions mean. When I started my career, I often made initial contacts on the telephone, which was easier because I did not have to deal with complex social signals. This helped me get my foot in the front door. After the initial call, I would send the client a project proposal and a brochure showing pictures of previous jobs. The call enabled me to show my qualifications without showing my nerdy self-—until I was hired to design the project. I was also good at selling advertising for the Arizona Cattle Feeders' Association annual magazine on the telephone. I just called up a big company and asked for its advertising department. I had no fear of anyone's rank or social position. Other people with autism have also found that becoming friends with somebody on the phone is easier than building a face-to-face relationship, because there are fewer social cues to deal with.

Autistic people tend to have difficulty lying because of the complex emotions involved in deception. I become extremely anxious when I have to tell a little white lie on the spur of the moment. To be able to tell the smallest fib, I have to rehearse it many times in my mind. I run video simulations of all the different things the other person might ask. If the other person comes up with an unexpected question, I panic. Being deceptive while interacting with someone is extremely difficult unless I have fully rehearsed all possible responses. Lying is very anxiety-provoking because it requires rapid interpretations of subtle social cues to determine whether the other person is really being deceived.

Some researchers don't believe autistics are capable of deception. They subscribe to Uta Frith's conception of autism, wherein people with the syndrome lack a “theory of mind.” According to Frith, many people with autism are not able to figure out what another person may be thinking. It is true that autistics with severe cognitive deficits are unable to look at situations from the vantage point of another person. But I have always used visualization and logic to solve problems and work out how people will react, and I have always understood deception.

As a schoolchild, I played hide-and-seek. I learned how to trick the seeker into going the wrong way by stuffing my coat with leaves and putting it in a tree. I also had my entire boarding school believing that they had seen a flying saucer when I swung a cardboard saucer containing a flashlight in front of another girl's window. When she asked me about it, I told her she had probably seen a piece of insulation falling from the roof of our unfinished dormitory. I had rehearsed a whole bunch of explanations for the sighting, including the falling insulation, so she wouldn't connect my absence with the appearance of the saucer. My ploy was successful. Within two days, most of the students thought that a real flying saucer had been sighted. This deception was easy because I had gone over in my imagination all the stories I was going to tell.

I've always enjoyed these kinds of tricks, because they require a vivid imagination, which I have in abundance. I'm motivated by the same challenge that makes hackers break into computers. I really identify with clever hackers. If I were fourteen years old today, I'm sure I'd be hacking away just for the thrill of seeing whether I could do it. I would never engage in harmful deceptions, though. In some ways I guess these tricks are a substitute for deeper human connection. They enable me to penetrate the world of other people without having to interact with them.

Often people with autism are taken advantage of. Paul McDonnell wrote about the painful experience of being betrayed by somebody he thought was his friend, having his money stolen and his car damaged. He didn't recognize the social signals of trouble. It is easy for me to understand the concept of deception when it involves playing tricks with flying saucers or stuffing coats with leaves, but understanding the social cues that indicate an insincere person is much more difficult. In college I was betrayed by students who pretended to be my friends. I told them my innermost thoughts, and the next thing I knew they were laughing about them at a party.

Over time, I have built up a tremendous library of memories of past experiences, TV, movies, and newspapers to spare me the social embarrassments caused by my autism, and I use these to guide the decision process in a totally logical way. I have learned from experience that certain behaviors make people mad. Earlier in my life, my logical decisions were often wrong because they were based on insufficient data. Today they are much better, because my memory contains more information. Using my visualization ability, I observe myself from a distance. I call this my little scientist in the corner, as if I'm a little bird watching my own behavior from up high. This idea has also been reported by other people with autism. Dr. Asperger noted that autistic children observe themselves constantly. They see themselves as an object of interest. Sean Barron, in his book
There's a Boy in There
, describes having conversations with himself to figure out social mistakes. He divides himself into two people and acts out the conversation.

According to Antonio Damasio, people who suddenly lose emotions because of strokes often make disastrous financial and social decisions. These patients have completely normal thoughts, and they respond normally when asked about hypothetical social situations. But their performance plummets when they have to make rapid decisions without emotional cues. It must be like suddenly becoming autistic. I can handle situations where stroke patients may fail because I never relied on emotional cues in the first place. At age forty-seven, I have a vast databank, but it has taken me years to build up my library of experiences and learn how to behave in an appropriate manner. I did not know until very recently that most people rely heavily on emotional cues.

After many years I have learned—by rote—how to act in different situations. I can speed-search my CD-ROM memory of videotapes and make a decision quite quickly. Doing this visually may be easier than doing it with verbal thinking. And, as I have said, I try to avoid situations where I can get into trouble. As a child, I found picking up social cues impossible. When my parents were thinking about getting divorced, my sister felt the tension, but I felt nothing, because the signs were subtle. My parents never had big fights in front of us. The signs of emotional friction were stressful to my sister, but I didn't even see them. Since my parents were not showing obvious, overt anger toward each other, I just did not comprehend.