CHAPTER 9
Adolescence, Adulthood, and the Future
Adolescence brings many changes for child and parent alike. Sexual maturation takes place as well as physical growth and many emotional and developmental changes. This can be a difficult time for both children and parents—even for children who are developing typically. It can be even more difficult for children who have sexual feelings but whose social and communication problems make it hard for them to talk about these feelings. For the highest functioning adolescents with autism or Asperger’s disorder, the interest in others may be complicated by their difficulty in making connections with peers or feeling rebuffed when they attempt to do so. Adulthood brings another set of challenges. For an increasing number of individuals on the autism spectrum, this means going to college or vocational school—with all the changes entailed in being independent. For other individuals, the goal may be living apart from parents, in a setting where some minimal or moderate level of supervision is provided. For some individuals, it may mean living at home but having a job, perhaps with support, in the daytime. For others, there may be an option for a group home with supported employment.
In this chapter, we discuss some of the issues that impact adolescents and adults with autism and what parents and teachers may do to make things go more smoothly. We start with a discussion of the facts about adolescence and puberty and then move on to talking about sexuality and coping with some problem behaviors in adolescence. We then move on to discussing adulthood and future planning issues. Although we have separate sections in this chapter focused more on adolescents or on adults, keep in mind that, of course, many of the issues discussed apply to both age groups. It is the case that many of the same issues and concerns relevant to children can still apply to adolescents and adults. Fortunately, there are more and more resources available, and some of these are included in the reading list at the end of this chapter.
ADOLESCENCE: BASIC FACTS
Although most of us tend to think of adolescence as a time of turmoil, research has shown that this is not always so for typically developing children—indeed, it probably isn’t even usually so. It is true that some children with autism spectrum disorders (ASDs) go through adolescence fairly smoothly. Still, puberty (which also means the beginning of adolescence) involves a set of dramatic changes in a child’s body, which can pose problems for any child. An increasingly adult body is also associated with a new set of societal expectations—which can be especially difficult for individuals with autism to grasp. What is acceptable and cute in a 4-year-old may not be so easily accepted in a 14-year-old.
Children enter puberty when they begin the process of sexual (reproductive) maturation. The overt physical changes of puberty are the result of complicated processes that really start before birth. Hormone systems, which previously had been relatively inactive, become much more active, resulting in dramatic changes in growth and in the body. In fact, the bodily changes of puberty are really only surpassed by those of infancy! It may not be surprising, then, that for some children on the autism spectrum, puberty can be a difficult time.
The bodily changes of puberty usually emerge over a period of about 4 years or so. Girls, on average, mature about 2 years earlier than boys. As levels of hormones start to increase, changes in both body size and what are called the “secondary sex characteristics” (increases in body and facial hair, changes in the voice, and in the breast and genital organs) become marked. In fact, the hormonal changes that trigger puberty start some years before the observable body changes. Various stages of puberty have been defined (see
Table 9.1) in both boys and girls and serve as a rough guide to where in puberty an individual child is.
SOURCE: Adapted, with permission, from Tanner, J. M. (1962). Growth at adolescence (2nd ed.). Oxford, UK: Blackwell; and Daniel, W. A. (1977). Adolescents in health and disease. St. Louis: Mosby.
Sex Differences in Puberty
There are differences between boys and girls in how puberty develops. As mentioned, girls tend to mature before boys. For girls, signs of the beginning of puberty include breast development, with the onset of menses (menarche) happening fairly late in the process. For boys, growth of the penis and testicles and development of pubic hair will often be the first signs of puberty. Changes in hair (first in the underarms and then in the face) and voice happen a bit later. There are wide variations for both girls and boys related to when puberty starts, and how long it takes to unfold. It does seem that with better nutrition and health care, puberty now occurs earlier than it used to. Both boys and girls typically go through a “growth spurt,” during which they may grow three or more inches a year. The growth spurt in boys is usually longer than it is in girls.
Perhaps the area of greatest concern during adolescence is that of growth and sexual development. Parents often worry when their children develop either very early or late. The pediatrician can provide helpful information to parents on changes to expect.
ADOLESCENCE IN CHILDREN WITH ASDS
Puberty is driven by biology and not developmental status. It is not typically delayed in children with autism and related disorders. However, the transitions and changes of puberty can be much more difficult for children with ASDs for many reasons. First and foremost, it is not always possible to totally prepare the child for the changes that she is about to experience. She may lack good communication skills or be unable to fully understand what parents are trying to explain. In addition, the rapid mood changes that the parents of all adolescents try to cope with, and often find frustrating, can be magnified in children with disabilities. Aggressive behavior toward others and self-injurious behaviors can escalate. These behaviors can be harder to physically manage as the adolescent or young adult with an ASD becomes larger and stronger (we discuss this shortly).
It is hard to know when behavior changes merely signify “normal adolescence” and when they are clues to new underlying problems such as the pain of an ear infection or a toothache. Sometimes parents may need to go to the doctor in order to rule out medical problems. In general, the start of adolescence is a good time for the child to have a scheduled physical—that is, at a time when the child is not sick and parents (and the child) can spend more time with the doctor talking about changes in adolescence. Adolescents with autism or pervasive developmental disorder (PDD) may develop any of the medical problems that other adolescents develop during this time of life. In addition, adolescents with autism have an increased risk of developing seizure disorders (see Chapter 12).
Adolescents need to eat more during growth spurts, so if the child is a very picky eater, it may require new efforts to get him to eat all that is needed. For some adolescents, obesity may be a concern, especially if the adolescent or young adult with an ASD doesn’t have as many outside activities or sources of exercise as a typical teenager.
Leo Kanner, the man who first described autism, also was one of the first people to do follow-up studies, made an interesting observation. He noted that some children with autism improved with adolescence while others lost skills. Subsequent work has tended to support his observation. Often, even children with more severe behavior problems seem to have a general improvement. In some cases a child seems, in the early teens, to become very motivated to become part of a peer group. The number of children who improve varies from study to study, and also depends on how improvement is defined, but seems to be between 40 and maybe 80% of cases. These gains include gains in communication, social skills, and behavior. In some cases, the improvement is very significant, and sometimes the person, as a young adult, may even seem to “lose” the diagnosis of autism.
However, some children seem to take a downturn in adolescence. This, fortunately, is relatively less common and may be seen in perhaps 10 to 20% of cases. Sometimes this is associated with the onset of seizures, and then it is difficult to know how much of the change is from the seizures, the medicines used to treat the seizures, or both. Even when deterioration doesn’t happen, some children continue to have behavior problems, and larger physical size and new preoccupations (e.g., sexual behaviors) may pose new challenges.
BEHAVIOR PROBLEMS IN ADOLESCENCE
For some children with ASDs, the hormonal changes that precede the onset of puberty may exacerbate preexisting behavioral difficulties such as aggressiveness and self-injurious behaviors. In other children, the start of adolescence will bring on these types of behaviors for the first time. To complicate things further, the many changes in the body and an emerging sexuality may only add to life’s confusions. Unfortunately, this is also a time when children are moving into more complex social and physical environments such as high school.
Behavior problems in adolescence often seem to start a year or so before the bodily changes that signal puberty. These may take the form of greater irritability, decreased attention, higher levels of activity, and stereotyped behaviors. Often, these behaviors get better as the child enters puberty, but the increase in the child’s physical size and the potential seriousness of the behaviors may be very problematic. As the adolescent or young adult with an ASD becomes older, parents may consider medications to help manage behavior problems, or, if she is already on medications, parents may need to increase the dose or change to new medications. The strategies we discuss in Chapters 13 and 14 can be used effectively. Talk to the young person’s school staff as well about strategies that may help the adolescent or young adult with an ASD cope at school. An increase in physical activity may, for example, be helpful to some children. We talk about other potential approaches to behavior problems in Chapters 15 and 16. As we emphasize in those chapters, an important first step is to try to “get the big picture” and put the behavior problem in a broader context.
Individuals who make major improvements in adolescence often have an emerging sense of being different and of wanting to “fit in.” For these adolescents, it is important to support their desire and motivation to work toward more typical peer relationships. These individuals are the ones who often will receive the least amount of services in school (because they indeed are doing well) but who also would profit the most from explicit teaching about social relationships and real-world skills. These more able individuals are also often the ones who can become, at times, depressed or anxious about feeling “different.” They also can respond very well to structured psychotherapy/counseling approaches (see Chapter 14) and to medications (Chapter 15).
SEXUALITY
Developing sexuality poses a complicated set of issues for typically developing children, much less those with some developmental vulnerability. Some adolescents with autism will have strong sexual feelings; others won’t. Some children, particularly higher functioning children, may be very motivated to have a girlfriend or boyfriend, and sometimes this extra motivation helps the child make important gains. It is important to realize that sexual feelings are very much tied up with feelings about relationships—which means they are even more problematic for children with autism and related difficulties.
For typically developing children, sexual awareness comes early. Toddlers are aware of the differences between boys and girls by around age 3 and know their own gender. They also have a growing sense of their own bodies, and, through toilet training, an awareness of the distinction between public and private behaviors. As children become older, they want to understand more about their bodies and where babies come from. For the typically developing child, parents, teachers, and peers are all important sources of information. By adolescence, there will be an interest in bodily changes such as menstruation and wet dreams and a strong awareness of appropriate and inappropriate sexual behaviors. Older adolescents cope with issues such as the distinction between love and sex, the importance of contraception and preventing sexually transmitted disease, and more adult-like notions of what long-term relationships mean.
For a child with an ASD, education about sexual issues is complicated by both language and communication difficulties and social problems. Sexual feelings can sometimes be quite intense—for lower and higher functioning children alike. Unfortunately, one of the prime sources of information available to typically developing children (i.e., their peers) is not so readily available to the child with an ASD. The child’s learning difficulties and adults’ anxiety may both pose further challenges to learning!
People used to believe that the social problems of autism prevented sexual interest or relationships, but we now know that this isn’t true. With earlier intervention and an emphasis on programs in communities, more people with ASDs are having meaningful relationships—sometimes including sexual relationships. Parents of adolescents with ASDs, like many parents, may have trouble viewing the adolescent as a sexual being, and parents may be concerned that the adolescent may be taken advantage of. However, it is important for the individual’s emotional health for parents to allow her or him to explore their sexuality at the same time the child is learning other positive ways to relate to others.
In helping the person learn to develop relationships, keep in mind that parents want to:
• Make the learning process as positive an experience as possible.
• Help the child learn about what not to do as well as what to do (there are some absolute no-nos like talking about a desire to have sex!).
• Remember that the overall goal is to help the adolescent develop a more positive view of herself or himself.
As with other activities, experience is helpful. This experience may need to be carefully planned and monitored. For example, mixed (male-female) group activities present excellent opportunities for socializing. Explicit teaching can be helpful here, particularly for more verbal young people, and can emphasize important (but complicated) distinctions, such as the difference between what we think and what we say (Myles, Trautman, & Schelvan, 2004; Myles and Adreon, 2001). Understanding the distinction between public and private behavior is also important. Again, teaching the adolescent or young adult with an ASD when to say no, who can touch what and where, and when touching might be appropriate is also essential. For children who have not yet mastered them, there will be many chances to learn some of the appropriate social rules. Guided rehearsal and practice may also help—for example, in teaching the adolescent or young adult with an ASD how to act during a date. Many of the resources we mention in discussing social skills interventions (see Chapter 6) are very appropriate here (see also Baker 2003, 2006a,b). If the adolescent or young adult with an ASD has the chance to attend a social skills group with other teenagers, that may also be a big help.
Sometimes adolescents with Asperger’s disorder or autism can be quite preoccupied with sex or with the issue of wanting a girlfriend or boyfriend. To some extent, these concerns are age appropriate and expected. They can, however, result in some very awkward moments if the adolescent or young adult with an ASD takes a rather literal, one-sided approach to trying to obtain what she wants. For example, one teenager we know with Asperger’s disorder would pick a girl and stare at her during lunch in the high school cafeteria. The girl would eventually come over to ask him what he wanted and he would then make a very explicit sexual request! This young man had to learn that while the girl had indeed asked him what he wanted, there is a rule against answering as frankly as he did.
In general, parents should help the adolescent or young adult with an ASD deal with emerging sexuality by having open discussions with them, with responses pitched to a level she or he can understand. These discussions should also make clear what the rules are for socially acceptable behaviors. It is important to keep in mind that sex is only part of what needs to be discussed. The adolescent or young adult with an ASD also needs to understand the role that relationships play in sexuality and to understand the differences between having a friendship and a sexual relationship.
Occasionally, particularly for individuals with greater cognitive impairment, parents may need the help of a specialist in dealing with sex education issues. For example, parents may want to consult a specialist if the adolescent or young adult with ASD has real difficulty understanding basic issues such as masturbation and the need for privacy. Potential resources include the adolescent’s or young adult’s school and physician or agencies such as the state department of developmental disability. Other parents can also be sources of good information.
Teaching About Sexuality
It is important to realize that helping prepare the child for adolescence and emerging sexuality really begins much earlier in life. Parents and teachers should try, whenever possible, to affirm the things that the child can do, and encourage an awareness of the importance of others and the many different kinds of relationships we can have. Early relationships with brothers and sisters and with parents will usually provide opportunities for learning about the differences between the sexes as well as about the child’s own body. Because sexual issues are also very much relationship issues, it is important, early on, to encourage social skills, as discussed in Chapter 6. Encouraging relationships both within and outside the home is important since these relationships will provide opportunities for learning and generalizing skills.
When teaching about sexuality, the first consideration is, of course, determining where the child is in understanding these issues. If the child is younger or more cognitively challenged, teaching must start at a lower level, for example, helping facilitate an understanding of privacy issues, of basic differences between the sexes, and so forth. As understanding increases, parents can begin to discuss issues that will be more relevant in adolescence, such as menarche and masturbation. It is also important to teach children about appropriate and inappropriate touching—that is, who can and can’t touch the more private parts of their bodies (an issue that often will have come up already with their doctor). There are some excellent guidelines and curricula developed (see the reading list at the end of the chapter).
Privacy and Modesty Often, the first difficulty parents face is teaching some ideas about privacy and modesty. This issue often arises early because parents may need to spend a longer time teaching the adolescent or young adult with an ASD skills such as toileting and dressing. Modesty is a difficult concept because it requires a judgment and an appreciation of context. It is important to understand, that it is all right to be naked in the shower or while changing clothes in a locker room but not “in public.” The child with an ASD often has difficulty in appreciating context, and this, combined with a tendency to be rigid, can make for some problems in teaching. Teachers and school staff can be a tremendous help in this regard by reinforcing appropriate behavior and setting guidelines for children to apply in and outside school.
Problems in appreciating privacy and modesty rules cause endless troubles—sometimes starting at a fairly young age. A friend of ours, who once worked in a group home, tells a wonderful story of taking one of the clients in the home to a classical music concert. This rather large, nonverbal young man with autism loved classical music and seemed to enjoy the performance very much. The only problem arose when he went into the bathroom by himself. Shortly, a torrent of men were pouring out the door. It turned out that the young man with autism had learned early in life that when you go to the bathroom, you take off all your clothes first, and his doing this in the concert hall bathroom probably did not seem at all out of the ordinary to him!
In thinking about teaching modesty, there are several important considerations to keep in mind. First, what are the situations where privacy/modesty is needed? And second, whom do parents know who can help do some teaching? For example, grandparents and siblings may be good resources, but casual acquaintances are not. Teachers and school staff can help but should be sure that parents are actively involved in the discussion process. Third, as with other tasks, parents have to think about what they want to teach and the challenges for teaching. So, for example, given the difficulties children with autism have in generalization, parents might want to teach the child to get dressed in his or her bedroom or bathroom and nowhere else (at least at first). Similarly, bathrooms are a good place to teach personal self-care and grooming (see Chapter 6). Parents can make a point of shutting the door to “have some privacy.” Beginning early in life, parents can also gradually teach the names of body parts and can point out differences between boys and girls and men and women. Some parents find it helpful to teach their child that the private parts of the body are the ones that are covered by a swimming suit. For additional guidance, parents may want to refer to Schwier and Hingsburger (2000).
Masturbation Most children with autism and related conditions will learn to masturbate. This can be a source of discomfort for parents and teachers. It is important to realize, however, that masturbation is very common in all children and adolescents and that the task for children with autism is to learn that if they do this, they need to do it in the privacy of their bedroom. Often, masturbation will start in the preschool or early school years and parents and teachers have the opportunity to explain (in as simple language as is needed) that we don’t engage in that behavior in public—obviously, that means the child needs to understand what private spaces are. A matter-of-fact attitude is much better, since parents may otherwise teach the adolescent or young adult with an ASD a very effective and problematic way of always getting attention!
Some parents tell their child that bad things will happen to their bodies when they masturbate—this only adds to the child’s confusion since it is untrue! Often, much patience and work is needed. Visual supports and other learning aids can be helpful—for instance, learning to put out a sign that says “Do not disturb” (as in a hotel).
Sometimes masturbation during school can be a problem. Giving the student opportunities for frequent movement or objects to manipulate with the hands as an alternative activity may be helpful. (An occupational therapist [OT] can often recommend materials.) Exercise, too, can help. The OT and special education teachers may help come up with some strategies for helping the adolescent or young adult with an ASD learn that masturbation in school is not appropriate.
Teaching About Boundaries The possibility of sexual or physical abuse is always a concern for parents. Parents of lower functioning children are often worried that they might not know about abuse if it occurs, and parents of higher functioning children worry that their child may easily be misled into inappropriate sexual activity. Fortunately, most children with ASDs are closely supervised in their day-to-day activities and the opportunity for abuse does not occur. Planning for activities and work should include consideration of whom the adolescent or young adult with an ASD will be with and the safety of the situation. This may be a greater concern for more high functioning children because they may be allowed more independence and less supervision. They may not fully understand other people’s intentions, however, and at times other people may not understand their behaviors.
SIGNS OF POSSIBLE ABUSE
Sexual or physical abuse can sometimes be easy to detect and sometimes more difficult. Among the many clues to possible abuse in typically developing children (which may also be seen in children with ASDs) are:
• Unusual changes in behavior
• Increased anxiety or depression
• Avoidance of certain people or situations
• Increased agitation or aggression
• Withdrawal
Sometimes a marked increase in sexual activity (such as masturbation) may be the only sign. Physical symptoms or signs of sexual activity are obvious warning signs.
Discuss any suspicion of sexual abuse with your health care provider. And remember that, by law, the provider must contact child protective services if he or she thinks there is a possibility that the adolescent or young adult with ASD has been abused.
Part of growing up is learning about boundaries and appropriate behavior on the part of others. Various programs and curriculums are available (see reading list). These programs can help to teach about levels of intimacy in a very concrete way and help convey the idea that different adults have different relationships with the child. For example, handshakes are appropriate for adult strangers; for closer friends and family members, other kinds of contact such as hugs may be appropriate. Clearly, teaching about strangers and being appropriately wary of strangers is important. For children who are verbal, the “No, Go, Tell” strategy may be useful. This method, described by Schwier and Hingsburger (2000) involves being able to say no to an activity, getting away from the situation, and telling others what has happened. There are some other excellent resources in the reading list at the end of this chapter.
Unfortunately, there will inevitably be some exceptions to the various rules parents teach, and sometimes these will come back to haunt parents. For example, if parents teach the adolescent or young adult with an ASD not to let strangers touch her, sooner or later she will see a new doctor who is a stranger to her, but who has a legitimate need to touch her.
Girls in Adolescence: Physical Changes and Medical Issues
As their breasts enlarge, girls with ASDs need to understand that breasts are a private part of the body. They should know that other people should not be attempting to touch their breasts and that they should not show them to others. Higher functioning girls will want to know more about the functions of the breasts. As the breasts develop, the doctor will want to talk about breast exams (see the reading list for some helpful books).
Like all girls, girls with ASDs should be prepared in advance for the onset of their period. The reading list gives some resources that may be helpful in educating girls about their bodies and the changes to expect. For children who are verbal, the chance to talk with their mothers or older sisters can be a big help. Do not overwhelm the girl with information that she may not be interested in, but be prepared to answer her questions in a matter-of-fact way. For example, she may or may not want to know why women menstruate, but if she asks, provide truthful, factual information.
Some girls will be able to manage on their own with the help of their caregivers, but others may require more direct supervision or help during their periods. When your daughter is having her period, it may be helpful to teach her to change her pad at specific times, such as after math class and after lunch (particularly if she has trouble making this judgment herself). As with other self-help skills, teaching the steps involved may be useful for less cognitively able students.
At least initially, someone may need to keep track of how often the girl has a period and how long it lasts, and at times be sure that the pads are changed when necessary. Personal hygiene may require more intervention than before for some girls. Additional discussions about privacy may also be needed. For instance, more verbal and talkative girls will need to learn that one’s periods are not a topic for general conversation. Parents and teachers should also, of course, be mindful of the need to respect privacy and be sensitive to the situation and context in discussions of these issues.
Some girls have cramps with their periods. These can start a day or so before the period or at the beginning of the period. Usually, they last only a few days. For girls with poor communication skills, cramps may be a cause of behavior change at this time of the month. Menstrual cramps are often treated with non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen. If the pain is severe and interfering with normal functioning, birth control pills may be used to prevent the cramps.
Birth control pills or other types of hormonal contraception can be very useful in helping teenage girls and young women with autism manage their periods. First, they can help reduce heavy menstrual flow. Second, they make it easier to predict when a girl’s period will start. That may be very helpful when a girl has major behavioral changes with her period or needs quite a bit of supervision when changing her pads and with general hygiene when she has her period. If birth control pills are used, someone needs to be sure that they are taken every day as prescribed. Hormone injections, given every 3 months or implants that last longer, have also been used for birth control or to control the periods and symptoms caused by them. For girls who have trouble remembering to take a pill every day, or for those who might take a patch off, the injections or implants can be very helpful. This may be particularly helpful in girls and young women with ASDs who have a very hard time coping with their periods and any associated symptoms.
There are many potential side effects to hormonal birth control, but in general it is very safe in teenage girls. The hormones can interact with some drugs, especially some antiseizure medications, so be sure that the doctor prescribing the birth control pills knows whether your daughter is on any other medications. Most teenagers placed on birth control pills are put on what are called “low-dose” pills. That means that the amount of hormone in them is lower than in the past and there are many fewer side effects. As we discuss concerning other medications, it is always important that parents discuss the potential benefits and risks of any birth control medication for their daughter with her physician before deciding to use these.
Premenstrual Syndrome (PMS) It is important to realize that girls with autism may have PMS, but that it may be harder to diagnose in girls with severe communication problems. In such circumstances, it is important that parents are aware of the timing of what appear to be unusual, monthly “behavioral difficulties,” which may actually represent a response to discomfort. PMS symptoms can vary greatly among girls. Some will have few or no symptoms, while others, unfortunately, can have many different symptoms. Both physical and emotional symptoms can be a part of PMS. Some of the most common physical symptoms include headaches, breast swelling and tenderness, change in appetite, weight gain, tiredness, and achy muscles and joints. Common emotional symptoms include irritability, depression, anxiety, poor concentration, and social withdrawal (which may be hard to separate from some girls’ underlying behavior and social difficulties that are part of the ASD). Changes in sleep, with either trouble sleeping or sleeping more than usual, have also been described as a part of PMS.
The symptoms of PMS, as the name implies, usually appear in the second half of the menstrual cycle before the period starts. No one treatment has been found to work for all of the symptoms of PMS or for everyone. For some girls, being aware that these symptoms can be expected at a certain time of the month can be helpful in dealing with them. Others have found that exercise is helpful in preventing or lessening the symptoms. Sometimes taking 1,200 mg of calcium per day is recommended as a way to prevent PMS. This is the amount of calcium that is recommended anyway for children and adolescents during their years of rapid growth so that they will develop strong bones. NSAIDs such as ibuprofen and naproxen sodium, which are over-the-counter drugs, or prescription medicines of this type can be helpful for some of the physical symptoms of PMS. For girls with severe symptoms of PMS, birth control pills have been used with very good results. Remember, parents want to carefully weigh the potential risks with the hoped-for benefits before starting these. Antidepressants have also been used at times for severe PMS symptoms and have been very helpful for some people.
Pelvic Exams At some point, all girls need to start having an annual pelvic exam. If a girl is not having any problems with her periods or other aspects of her gynecological health and she is not sexually active, she can wait until sometime between age 18 and the early 20s before starting the annual exams. If there are problems sooner, she will need to be examined at that time. Some young women will find it hard to have a pelvic examination and sedation or even anesthesia is sometimes needed.
Boys: Physical Changes and Medical Issues
Many changes also occur in the bodies of boys during puberty. As mentioned earlier, these include increased hair, growth of the body, change in voice, and development of the genitals. They also include wet dreams (emission of semen during sleep) and erections as sexual maturation moves along. These occurrences can be confusing. Boys who are higher functioning may be relieved to hear that this is a normal part of growing up. As with girls, advance preparation is helpful; often, the father or a brother would be a good person to do this!
By this time in adolescence, it will be important that the doctor include examination of the genitals as part of the regular physical examination. This is also an opportunity for the doctor to teach the young man about self-examination of the testicles for lumps, if this is appropriate—that is, if the boy can understand the reason for doing it.
Contraception and Protection from STDs
There are a variety of reasons that it might be appropriate to think about safe sex for a son or daughter with autism. Some adolescents and young adults with ASDs may be able to enter into a longer term relationship that involves a sexual relationship. For other young people, contraception might be an important safeguard to consider when they move into a community living situation. Occasionally, birth control pills may be used to treat painful periods (dysmenorrheal) and sometimes for other medical reasons as well (see the earlier section on birth control pills).
Usually, the issue of birth control looms larger in the minds of parents of girls, but even parents of boys with ASDs should realize that sexual activity brings potential risks of sexually transmitted diseases (STDs) as well as of pregnancy. That is, if a young man is going to be sexually active, he must understand the risks of unprotected sex. Some higher functioning young men may need help to understand the use of condoms.
The issue of birth control and an awareness of the risks of unprotected sex (including pregnancy) should be discussed with the sexually active teenager and young adult. The health care provider of the adolescent or young adult with an ASD may be helpful to parents in the process. As far as we know, individuals with ASDs are just as fertile as anyone else. In addition, if someone with autism conceives a child, there is some potential that she will pass along the risk for autism, if not the actual disorder, given that there seem to be strong genetic aspects to autism.
In the past, it was common for individuals (particularly women) with intellectual disabilities to be made infertile (sterilized) without their consent. Currently, laws about sterilization—as well as marriage and guardianship—vary significantly from state to state. In considering what is best for your own child, it is important to realize that sexuality does not have to lead to childbearing and sterilization won’t of itself make her less vulnerable to abuse. Parents should also remember that anyone who has the cognitive ability to make decisions about her own health care is entitled to do so, and decisions about the reproductive status of an adolescent or young adult with an ASD very well may not be the parent’s to make.
HIGH SCHOOL: CHALLENGES AND OPPORTUNITIES
High school presents some challenges for typically developing children, and in some ways even more so for children on the autism spectrum. There are many different sources of challenge:
• Typically developing adolescents in high school function at a very high social level. Students with ASDs often are several, and sometimes many, years behind in terms of their social sophistication and ability to tolerate the fast pace and nuanced social interaction of high school.
• Academic/cognitive demands are greater; this may present a very significant challenge for the less cognitively able student.
• Demands for self-directed learning, self-monitoring, and organization skills are high; students are expected, often, to work largely independently, and issues such as time pressure and organization may pose significant obstacles for students with ASDs.
• The physical environment of high schools can be challenging—often these are large schools where students move frequently from class to class, and hallways are noisy places where a lot of socializing goes on.
• Demands for self-care and personal hygiene are high; adolescents are often meticulous (even when they sport a studied nonmeticulous look) about appearance, cleanliness, and so forth.
• This is often a time when typically developing adolescents start to orient to peers (over parents and siblings) and so peer group issues and peer acceptance can loom large.
As noted in Chapter 4, the whole process of getting services should extend well into adolescence for those students who continue to need individualized education plans (IEPs). Work on adaptive, social, and communication skills should continue (see Chapter 6). There are some excellent resources for teaching social, organization, and other skills specifically written for high school students and young adults (e.g., Baker, 2006a; Wehman, Smith, & Schall, 2009). Transition planning should also be an important part of the IEP process, with the longer term goal/vision of enabling the student to be as independent and self-sufficient as possible in adulthood. This should include careful consideration of the student’s interests, abilities, and areas of challenge. It should be highly individualized. Depending on the level of the child, services in high school can be provided up to age 21 (or even longer in some states) or until goals and objectives are met. It is important for parents to realize that graduation from high school at age 17 or 18 does not have to occur and that many adolescents can remain in the high school system for several years more. Also, it is important to realize that as part of the IEP process vocational and other assessments can be requested. This should also include consideration of whether the student may be able to learn to drive independently. If not, other skills (e.g., using the bus) should be explicitly taught. Other considerations include any special needs, for example, relevant to the work environment.
Experiences of teasing/bullying or, more frequently, social isolation can be problems, particularly for more cognitively able students at this age, and it is important that some adult or adults are on the lookout for such situations (see Chapter 8). Bullying is probably most common in lower and middle school-aged children but sometimes continues into high school and beyond. Occasionally, students on the autism spectrum run into problems in college where their ten-dency to be more isolated and/or their special interests make them more vulnerable to hazing and harassment. It is important to realize that such behavior is not only inappropriate but also can quickly become illegal. The flip side, inappropriate pursuit of other students—either as friends or romantic partners—is sometimes seen. This can also be the source of great difficulty, and many schools/ colleges are relatively rigid about setting limits for such behavior and continued pursuit/harassment (a fine line between them may or may not exist) can result in expulsion. Many of the steps previously discussed on teaching appropriate social behaviors and distance will help.
TRANSITION TO COLLEGE OR VOCATIONAL PROGRAM/SCHOOL
For the more cognitively able student with an ASD, college or vocational school may be a good possibility. An increasing number of special programs around the country are designed to help with explicit teaching about the skills needed for attending college and living independently (see reading list). A number of different considerations apply in these cases. It is important for parents and students to realize that unlike elementary and high school, college attendance is not a right. Rather, the applicable law (see Chapter 4) refers to nondiscrimination for students with disabilities. As a practical matter, this has several important implications for students with ASDs in college:
• Students must self-identify as having some disability to the college disability office. Parents cannot do this for the student. Once the student does self-identify, a number of different, reasonable accommodations can be made, including tutors, help with organization, untimed tests, and so forth.
• Students must learn to be appropriate in their interactions with other students; this issue frequently surfaces when a student who has an ASD is perceived by other students as threatening or harassing.
• Students must be able to function reasonably autonomously, or special provision for support must be made; this can take the form of peer mentorship, roommates who have identified as having special interests in common with the student with an ASD, and so forth.
• Use of peer mentors and continued individual/group therapies may be helpful; for example, an individual therapist may work on problem issues such as depression or anxiety or explicit social teaching.
• Vocational training programs may be appropriate for many students. These can include an opportunity either to sample a range of potential vocational options or, for a student with a strong interest, to enroll in a program of study designed to teach specific skills (e.g., computer programming).
Keep in mind that the issue of job choice requires (1) a realistic awareness of strengths and weaknesses and (2) usually a situation where social- interpersonal demands are kept minimal.
• Independent living skills should be explicitly targeted. This includes everything from self-care to study habits, dealing with the cafeteria and student union, doing laundry, and so forth. For students who can make the transition, there are many advantages to colleges and vocational schools, especially those with residential campuses. For example, only a few places will serve food, libraries are relatively self-contained, and so forth. Even for students who live at home (e.g., attending a 2-year college program or nearby vocational programs), it is important to foster independent living skills.
There are now a number of excellent resources available, including several mentioned in the reading list at the end of this chapter including books by Harpur, Lawlor & Fitzgerald (2004) and Wolf, Brown, and Bork (2009).
HYGIENE AND SELF-CARE SKILLS
Bathing and grooming and similar skills become increasingly important for adolescents. Idiosyncratic habits, routines, or rituals may sometimes unintentionally provide an additional life complication for adolescents on the autism spectrum. For example, one higher functioning adolescent boy we know desperately wanted a girlfriend. Among many challenges he faced was the fact that he wore only one set of clothes, almost never bathed or showered, and made no attempt to make himself look more attractive. He spent a considerable amount of time in a social skills group complaining until eventually another group participant pointed out to him that girls were hard to please and that what people had to do to “get to first base” was be clean and presentable!
Modeling self-care skills at home when children are younger is one of the most useful (and least time-consuming) means parents can use to help the individual with an ASD learn what she needs to do. For girls, the chance to watch Mom and sisters put on makeup and fix their hair can be important; for boys, watching a father or older brother shave similarly can be helpful in the long run. Parents should also talk with the adolescent or young adult with an ASD and praise the child for his interest in being more “grown up.” Some adolescents with ASDs may overdo the interest in perfumes, aftershaves, or antiperspirants at first, but they can always learn to scale back a bit, and this skill will be helpful for them in the long run.
Teachers and school staff may be a big help in teaching self-care activities and independence (see Chapter 6). Various resources are available, including the use of visual schedules, pictures, picture books, social stories, and so forth.
MOVING TO ADULTHOOD
Outcome in Autism and Related Conditions
Predicting the future is hard for most things, and this is true for how any child will do. One of the things parents are, understandably, most concerned about is having some estimate/guesstimate of how well their child will do over time. As previously discussed, there are many, many difficult factors that make prediction difficult for the individual child—we start to get better when we predict about groups of children. Another problem is that there have been changes in how the diagnosis of autism is made, and other conditions, such as Asperger’s, are now included in the group of autism spectrum conditions. Yet another and very important factor is that as a society we are doing better at providing early diagnosis and services to children on the autism spectrum. Given all these issues, what can we say about adult outcome in autism?
If parents look at the first studies—by Kanner and his student Leon Eisenberg in the 1950s—we see a range of outcomes. Some individuals remained very dependent, but others, about one-third, had a “moderate social adjustment.” This is particularly impressive given that, at that time, there was not nearly as much known about treatment and what treatments were effective in autism. While some students achieved independence, Eisenberg also noted that social problems tended to remain (e.g., one young man was asked to speak at a sports rally and announced, quite truthfully, that the school’s team was about to lose). One of the problems in understanding many of the early reports was a lack of clarity about diagnosis. Despite this problem, people like Kanner kept very good records and noted some of the factors we still look at in guesstimating outcome—communication skills and levels of intelligence were, for example, strong predictors. It was while doing these follow-ups that Kanner and Eisenberg noticed that some children seemed to do particularly well in adolescence as they tried to gain better social skills. In some cases, individuals grew up to have their own homes, and one was married and had a child; in other cases, individuals (particularly those with more communication and cognitive impairments) remained with their families. Several studies suggest that the severity of autistic symptoms decreases with age, and this improvement can be observed in various areas of functioning. Usually, even in the cases with the best possible outcome, some degree of social oddity will persist.
For Asperger’s disorder, the outcome may be even better than that in autism. Although this issue is the focus of some debate, it is interesting that Asperger himself suggested that the outcome was probably better and this might not be so surprising given that communication and cognitive abilities often were areas of strength. It is also the case that Asperger tended to think of the condition he described more as a personality style rather than a developmental disorder, suggesting a potential “shading off” of the condition. Similarly, his observation that other members of the family, often fathers, have similar problems would seem to suggest good potential for long-term relationships. We’ll talk more about marital and couples issues for higher functioning adults on the autism spectrum shortly.
There have been a number of studies of outcome of autism and related conditions (see Patricia Howlin’s excellent chapter in the Handbook of Autism (2005) for a summary). As Howlin emphasizes, there are a number of problems in comparing studies, given changes in diagnostic terminology and different approaches used in defining outcome. In her recent review, Howlin tried to summarize these data by sorting cases into good, fair, and poor outcome (good outcome cases were largely independent, while those with poor outcome remained very dependent). Over time, it appears that the number of good outcome cases has almost doubled (before and after 1980), with fewer individuals having poorer outcomes over time.
Figures 9.1 and
9.2 summarize these changes over time in selected studies.
Several factors appear to be important in predicting ultimate outcome. One is the presence of truly communicative speech (by around age 5), another is nonverbal cognitive ability in the normal range, and yet another is the person’s capacity for self-sufficiency and independence. Some work has tried to refine early predictive factors; for example, vocabulary size has been thought to be a good predictor of outcome, although this is controversial.
Usually, adaptive skills (capacities for personal self-sufficiency and independence) are much lower than cognitive ability. This is one of the reasons that family involvement (from very early on) is so important in treatment (see Chapter 19). For example, in one study of adolescents, even though the mean intelligence quotient (IQ) was in the average range, only about half of the students were truly independent in self-care activities. This is reflected in a myriad of ways, including personal hygiene, ability to live and travel independently, and so forth.
Mental Health and Medical Issues
In general, the trend during adolescence is for decreased difficulties, although sometimes new problems emerge. These may have to do with trouble with change, compulsive behaviors, sexual behaviors, aggression, or other problems. For the more able individuals, including those who improve in other ways, problems with depression and anxiety can become much more striking. This is, sadly, something of a “double-edged sword” phenomenon; that is, sometimes the awareness of being or feeling “different” can motivate change on the one hand but lead to greater anxiety and depression on the other (Ghaziuddin, 2005). Studies of family history and genetics also suggest a potential genetic vulnerability for anxiety and depression (Rutter, 2005). When individuals are less able cognitively and have behavior problems, the literal increase in body size can, of itself, represent a new, and important, challenge.
As adolescents become young adults, they may need to find new health care providers. Some pediatricians may be willing to continue to care for the adolescent or young adult with an ASD into her 20s. As she reaches her 30s, or earlier with some doctors, parents will need to find an internist or family physician to take care of her. The main reason parents will eventually need to switch to an internist or family practice physician is that as the adolescent or young adult with an ASD grows older, the individual will develop the same kinds of medical problems that other older people get. That is, adults with autism are subject to all adult-related medical conditions, such as high blood pressure, high cholesterol, heart disease, and so on. The pediatrician may not feel comfortable treating these problems if they are not seen in children, and at times the pediatrician may not even recognize or think of problems that are seen only in adults.
Although autism has been recognized since the 1940s, relatively little has been written about adults with autism and their medical care. A particular challenge for parents of adults with autism and other PDDs is that many health care providers who typically work with adults are not knowledgeable about these disorders. Internists and general practitioners may have little or no training at all in the area of developmental diagnosis or developmental disability and may be hesitant to assume care for young adults with autism. Sometimes they are surprised or even shocked by the lack of cooperation on the part of an adult with autism. Other parents with older children with autism or PDD may be able to recommend doctors they have found who are willing to take on these young adults. The pediatrician may be able to help in the transition by speaking directly with the new doctor about the adolescent or young adult with an ASD and her special needs. For individuals who have seen a family doctor this may not be an issue at all.
VOCATIONAL ISSUES
The abilities to live and work independently as an adult should be the goal for persons with ASDs. Even when learning and behavior problems make this less likely the overall goal should be to help the individual attain as much self-sufficiency and independence as possible. For more and more individuals, adult independence is possible and, while challenges remain, more resources are available to help the individual, his family, and his school work for this goal. Unfortunately, there is considerable variability from state to state in what is actually available. There are some federal supports for vocational training for students who have substantial handicaps to employment and who can benefit from vocational services. Typically, state departments of vocational services (sometimes called voc rehab or DVR) often are the agencies mandated to provide these services. If adults qualify, a plan for employment—similar to the IEP—can be developed. Various other federal, and sometimes state, laws can apply. These have to do with discrimination against individuals with disabilities. At the federal level, the Americans with Disabilities Act of 1990 is often most relevant. It prohibits discrimination based on disability. This act applies in a range of settings, including most private employers, public accommodations, and so forth.
Community resources often lag behind what we need to help adolescents and adults enter the workforce. It is important for everyone concerned to realize that there are no mandates or rights relative to adult employment, unlike the right to a free and appropriate education in the United States. Rather, relevant laws have to do with rehabilitation and protection of persons with disabilities from discrimination. Transition planning is mandated for children with disabilities as part of a student’s IEP beginning no later than their 16th birthday. This acknowledges the need for a coordinated transition process with involvement of all relevant parties and ongoing collaboration. Other laws mandate equal access to jobs but not to necessary support services.
There are a number of challenges in transitional planning. These include costs involved in supporting students and community-based supports. Even the best planning is, of course, of little benefit if few opportunities and supports are available to adults who need them. For many persons, the family—particularly the parents, but also siblings and other family members—can be an important part of the planning process. At a minimum, they can serve as advocates for the person with autism. They can also have an important role in helping various agencies /service providers work together.
The marked individual presentations of individuals on the autism spectrum itself poses some obstacles for vocational planning. Some characteristics do have overarching importance; for example, in general, social vulnerability is a core shared feature and, accordingly, jobs that deemphasize social skills (to the extent possible) often work best. The Americans With Disabilities Act (ADA) prohibits discrimination based on disability. Employers must make reasonable accommodation for the disability. It is important to realize that the law doesn’t require that companies hire people with disabilities; instead, it says that employers can’t refuse to hire based on a person’s having a disability. It also should be noted that there are other important qualifications to the law. There are also specific procedures and legal safeguards for individuals who feel that they have been discriminated against because of disability. The earlier law (Rehabilitation Act of 1973) also has specific provisions that apply in federally funded programs. Lawyers with experience in this area are the most helpful in answering questions about disability discrimination. It is important to realize that these laws may apply in many different areas; for example, federal fair housing laws make it illegal to discriminate against individuals with disabilities (including autism) in housing. These laws also set forth standards for “reasonable accommodations” of persons with disabilities.
The marked variability in social, communicative, and cognitive abilities pose significant problems for vocational programs. Individuals do vary. They range from the man who talks too much about his favorite topic to the individual who rarely says anything and gets upset with change. Accordingly, it is important that individual interests and their strengths and vulnerabilities always be taken into account. A range of options is usually available and includes the following:
• Sheltered workshops. For many years, this was the most frequent placement for adults with autism who also had significant cognitive challenges. These workshops provide, as the name implies, a protected work environment. Often, this meant minimal challenges for the person with repetitive work and many periods of downtime and, of course, fewer opportunities for community engagement and further learning.
• Secured employment. In this mode, there is an attempt to support individuals with autism in less restrictive settings (e.g., in the community). This emphasis on a more typical life experience has been a great attraction. These programs, as parents can imagine, are more intensive in terms of initial assessments and continued support. There is typically a lifelong commitment by the agency to support of the individual. In this setting, a focus on behavioral and adaptive skills is also typical.
• Supported employment. In this approach, employment is combined with ongoing support (e.g., a job coach). This has been an increasingly common approach, and strategies to help individuals with ASDs have become much more sophisticated. Supported employment can take various forms. Intensive training and support is provided and the job coach and other supports are needed in the beginning, but their services may be gradually reduced over time. If an entire group of individuals can be supported at the same time, there may be some savings in terms of staff (job coach) time. However, continued support is often needed, even at a low level, and the move to decrease supports should not be too fast. Factors such as employer engagement, attitudes of coworkers, demands for social interaction, and productivity all are important, as is the ability to match, as much as possible, the preferences/strengths of the individuals with the job. Many factors/issues (not just economic ones) should be considered.
• Independent (competitive) employment. For more individuals on the autism spectrum, independent employment opportunities are increasingly available. Kanner himself observed that some of his patients were able, as adults, to enter into independent employment. Typically, these positions “played to strengths” of individuals with ASDs; for example, social requirements tended to be minimal and might include work in the computer industry, as a laboratory technician, in accounting, and so on. Higher functioning individuals, probably most particularly those with Asperger’s, have been able to secure employment as academics (in areas like astronomy, cartography, mathematics, chemistry, and computer science). Sometimes individuals are able to adapt to positions that might not, at least theoretically, seem to be good “fits” for the person on the ASD spectrum (Keel, Mesibov, & Woods, 1997). Clear expectations and routines still often seem to be important, and other issues (e.g., transportation access and money management skills) may also be very important.
LIVING ARRANGEMENTS FOR ADULTS
As with vocational programs, an increasing number of potential living arrangements are available. For typically developing children, late adolescence is usually a time to transition from living with parents to living semi-independently (in college or vocational programs or the military) before moving on to total independence as young adults. Even this pattern is changing, however, with many typically developing individuals moving back into their families of origin for periods of time. For individuals with ASDs, the challenges faced are significant ones with expectations for dealing with skills of daily living and coping with the challenges and frustrations of the work on a 24/7 basis. Fortunately, more and more options are available. That being said, many individuals, particularly those with autism, continue to live with their parents well into adult life. Individuals who experience the greatest challenge are those with the double handicap of an ASD and significant intellectual disability/cognitive delay.
Some of the traditional options have included group homes and supported apartments. In the former, a group of individuals with disabilities lives together with regular (usually 24/7) support from staff. In supported apartments, an individual or individuals may live with the periodic support of staff. In some instances, individuals may be able to live largely independently with occasional help from parents/family members. A number of transitional programs have grown up around the country that specialize in helping teach independent living skills to foster as much personal self-sufficiency as possible in adulthood. Other programs, sometimes referred to as skill development or host family homes, have the possibility for the individual to reside with a family who’ve been specially trained to teach self-care, community, and similar skills. Residential programs may be associated with specialized schools or autism treatment centers or may have more general associations with state departments of disability services. Increasingly, the trend has been for individuals living in group homes or other residential facilities to have significant community involvement. A myriad of options have been arranged by families, depending on the unique needs of the individual—for example, an apartment near the parents or a sibling. It is important that supports be flexible and consider the needs of the individual. One of the case examples given at the end of this chapter illustrates some of the problems that can come with inappropriate residential placement. In considering these programs, it is important for parents and the individual to be involved in the process of looking at the various options. There should be a feeling that staff and program are supportive and knowledgeable about the needs of a person on the autism spectrum.
In thinking about housing, it is also important to realize that, for adults, there may be special financial assistance available. It is important that parents and those working with young adults be aware of local, state, and federal supports. The reading list has a number of resources relevant to these issues and the specifics of skills needed for independent living.
PLANNING FOR THE FUTURE
Health Insurance
We discuss some of the issues involved in health insurance coverage in Chapter 10. As children become adults, they face several potential challenges in terms of health insurance support, that is, apart from their parents’ coverage. Some states prohibit discrimination in insurance based on disabilities, although various loopholes also give “outs” to insurance companies. Increasingly, states are passing laws that force insurance companies to cover individuals with disabilities and what are called preexisting conditions. Sometimes special insurance programs are available if parents can show that a person can’t obtain coverage elsewhere.
Government Benefits
There are two major federally supported programs that provide additional support for individuals with disabilities who can’t support themselves. These programs are called Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). The SSI program (
www.ssa.gov/ssi) provides a basic payment to individuals or couples every month. The amount paid is reduced by the amount the person earns as income. The program is designed for people who cannot bring in substantial income or what is called substantial gainful activity, which means they can’t engage in work. For children, the disability test has to do with “marked and severe functional limitations”; a specific set of guidelines for children and adolescents is provided. The web site listed earlier in this paragraph gives more information. In addition to being disabled, there is also a test based on financial need. Income past a very low threshold reduces the benefit on a dollar-for-dollar basis. There are some work incentive aspects to the program, for example, if additional income will help the person be able to work. For children and adolescents under 18 years of age, it is the parent’s income that determines eligibility. Accordingly, many individuals with autism and severe disability become eligible as they turn 18. For this to happen, however, the individual has to have assets below a certain threshold. Keep in mind that it may be particularly important to have SSI if only for purposes of obtaining health insurance, i.e., Medicaid, coverage.
The SSDI program is a bit different. The test of eligibility is the same as for SSI, but families don’t have to have very low income to be eligible. As with SSI, the amount of income that can be earned is very small. There are several ways to qualify, including being single and having a disability that began before age 18 or if the person is a child of someone covered by Social Security who has retired or passed away. There is more potential for earning at least a small amount of money each month with the SSDI program. Many individuals with autism and severe disability qualify for this program as their parents retire or die. More information is available online (
www.ssa.gov/disability).
Keep in mind that other benefits are potentially available; for example, there are special benefits associated with federal employees. One of the most important things about SSI and SSDI is that they also give access to Medicare and Medicaid insurance programs (see Chapter 10). Parents should think about these possibilities in their long-term planning; in particular, they should take care not to jeopardize eligibility for programs with a “means test” (i.e., where parents have to demonstrate income below a certain level). So, for example, Medicaid and SSI have a “means test,” but SSDI and Medicare do not. Other programs (e.g., housing assistance) may also have a specific means test. An important bottom line is to get some help in thinking long term relative to estate planning. Parents might, for example, think about a discretionary special-needs trust, which may avoid the problem of jeopardizing eligibility.
Guardianship and Legal Issues
As children become adults, they automatically assume legal and societal responsibility unless some special provision is made. Unless that happens, individuals become independent as they reach the legal age of adulthood—usually age 18 years. Parents of less cognitively able children (and sometimes those with more able children) just assume that they can continue to make decisions for the individual as he or she becomes an adult, but this is not, in fact, the case.
Depending on the situation, parents (or brothers and sisters or other family members) may wish to become guardians as the person with autism becomes a “legal” adult. Procedures and issues vary somewhat from state to state. There are different levels of guardianship—this may involve all kinds of decisions about the person, or it may be much more limited (e.g., to money-related issues). A person who is a guardian of property can make investments for the person. Depending on how the guardianship is done, this individual can make all decisions including living arrangements, medical treatments, and so forth. Typically, some—often very formal—legal proceeding is (rightfully) involved in this. Because laws vary from state to state, it is very important for parents to talk with a knowledgeable lawyer. Some of the issues involved are summarized on the next page.
GUARDIANSHIP
Definitions
A guardian has legal rights (fully or partially) to make decisions about housing, medical care, and so forth, for a person.
A conservator has special responsibilities for controlling finances for a person who is incapable, or only partically capable, of managing his or her own funds and property.
Terms and responsibilities can vary a bit from state to state. Often, the two positions are combined.
When Is a Guardian Needed?
If a person can’t take care of his or her own needs, is in some degree of risk or danger, or has no one with responsibility for making decisions for them.
How Is a Guardian Appointed?
Procedures vary from state to state but usually involve someone (e.g., a parent) filing a petition with the probate court seeking guardianship. The petition will usually have some evidence (e.g., medical affidavits or other statements) that indicate the individual is incapable of independent decision making. The court may then appoint a temporary person (guardian ad litem) who makes an independent report to the court after meeting with all those involved. The court may also appoint a physician or psychologist to examine the person who is said to be in need of a guardian. A trial or court proceeding may be held with the person present being given the opportunity to have a lawyer. The judge makes a decision and, if a guardian is appointed, issues special legal documents indicating just what the guardian can and can’t do.
Duties of the Guardian
These vary depending on need and the court’s decision. They can range from minimal involvement to basically being involved in all decision making for the individual, for example, where he lives, who takes care of him, and so forth.
Court Review and Supervision
There is usually some provision made for periodic review, for example, to be sure the person still needs it.
Termination of Guardianship
Can be done by the court if it determines that the person no longer is in need. Various special provisions can be made, for example, for having co-guardians (who must then agree on decisions) or indicating how provision should be made if the original guardian dies.
Parents can list (nominate) guardians for children in their wills, so the process of guardianship (or at least its first consideration) can begin when the person is a child. There are advantages and disadvantages to guardianship arrangements. In some states, when a person has a legal guardian, he or she loses specific rights (e.g., to vote or marry). Laws vary from state to state, but in almost all cases the process of having a guardian for an adult is typically somewhat complicated. Unfortunately, sometimes the court proceedings involved are tedious or, in the worst case, even humiliating to the person who is getting a guardian. Accordingly, working with a knowledgeable lawyer is important.
Estate Planning
The range in outcome for children with ASDs poses challenges for parents (and lawyers). Parents are forced to grapple with difficult issues—some common to all parents doing estate planning and others very specific to individuals with ASDs. Estate planning should begin once anyone has a child—this should include provision for care and custody of any minor children and also guidance for disposition of life insurance, trusts, and so forth. The temptation to delay planning is enormous. Unfortunately, so are the risks of not planning. Several different sets of issues arise including provision for children, considerations for adolescents and adults, and complications involved in the potential need for the person to have help in adulthood (e.g., in administering money from life insurance). It is important for parents to realize that sometimes state agencies can collect funds designated to support individuals with disabilities as part of what is called cost of care liability. Accordingly, simply leaving money, property, or other assets to a child in a will may not be the best approach in estate planning. Even setting up a special trust account in the child’s name may simply result in it going to the state if the child needs care as an adult.
Again, talking with a lawyer is critical. In some instances, it may be best to leave funds to siblings or other trusted family members or friends and specifically discuss with them parental desires for long-term support of the individual with an ASD. It is a bit confusing for parents, but, in fact, it is usually essential that this is voluntary on their part—that is, if parents superficially designate that the money is to go to support a child with an ASD, the state may be able to claim it. There is, of course, a major risk in that if the person to whom parents leave the money decides to spend it on something else, he or she can indeed do so.
Some states now have “special needs” trusts that allow the person (the trustee in charge of the trust) to use funds to benefit the designated person. As long as there is no specific legal requirement for the money to be spent for a special purpose on behalf of the individual, it may be relatively safe from being taken. However, other trusts that require funds to be used to support a person with a disability may indeed be subject to claims by the state. Talking with an attorney experienced in the laws of the particular state is clearly very, very important.
If the preceding information sounds a bit confusing, parents should, on the one hand, be reassured that it is and, on the other, realize that this means parents often need help from professionals in thinking about long-term planning for children with disabilities. Additional complications arise from the fact that laws can vary substantially across the various states and that while some programs are federal, it is often the state laws that will have to do with the intricacies of wills and other aspects of estate planning. The bottom line is that getting some professional help is important.
There is a natural tendency on the part of all of us to not think about long-term issues, particularly if they are unpleasant ones (like our not being around). It is important that parents fight against this natural tendency to put things off. Keep in mind that once parents have a will and or have begun the estate planning process, parents can always go back to change things, depending on the specifics of the situation. Also, parents should not assume things like “Jimmy will take care of Bobby when we no longer can”; instead, it is important to talk to siblings, family members, or other responsible parties. We’ve seen some tragic situations where a parent just assumed something would happen when they were no longer around but had not made appropriate arrangements. This can be particularly bad when parents haven’t made a will. Part of estate planning means looking at retirement plans, life and disability insurance, and, at times, having discussions with the child’s grandparents if they want to think about providing some resources in their will.
If parents don’t make a will, it usually is the case that children receive equal shares of whatever the person owns when they die. This means that the child with autism could receive money or assets that could jeopardize eligibility for support from many important programs. It is a dreadful mistake for parents to die and not have a will.
Parents who have wills can take various steps to ensure the care of their children, including those with disabilities. Often, it is the case that parents will appear to “leave out” the child in the will just to avoid the problem of “cost-of-care liability.” Even leaving money to a trust may pose some problems, as the trust may be factored into the cost-of-care liability. As a result, parents need to have a discussion with an experienced attorney who can work on this problem with them.
Similar issues arise with life insurance. If a sum of money goes to the person with autism on the parent’s death, this may also jeopardize their eligibility for important programs. Accordingly, the disposition of life insurance or retirement plan benefits should be carefully thought out as part of the estate planning process. As we have emphasized, including other relevant people (e.g., family members such as siblings or grandparents) in the planning is important.
Even having a bank account in a child’s name under the Uniform Transfers to Minors Act (UTMA) can cause trouble. Funds placed in the account become the child’s as he or she reaches 21 years of age and at that point also become involved in cost-of-care calculations. This can be a special problem for a person who, at age 18, has qualified for SSI and Medicaid, but who 3 years later has access to assets that then disqualify him from these programs. The bottom line here is that it may not be a good idea to set up a bank account in the child’s name.
LEGAL PROBLEMS FOR ADULTS
There is a small literature, mostly involving adults with Asperger’s, who have trouble with the law. For lower functioning adults, “crimes” mostly relate to issues of behavioral meltdowns, for example, in response to sensory sensitivities, or unusual interests. In more able individuals, particularly those with Asperger’s, the unusual interests can, at times, produce legal problems; for example, one young adult was so fascinated by animal life that he broke into a zoo. This literature mostly consists of case reports relating to a very small number of people. Sometimes the apparent legal problems represent a long-standing pattern of over-compliance, for example, the person who doesn’t exercise good judgment and stops in the middle of a crosswalk when the light changes. Occasionally, the desire for friendship and social contact, combined with eccentric social overtures and overwordiness, lead to trouble, for example, the high school student who makes explicit sexual requests because he doesn’t understand all the myriad steps involved in having an intimate relationship. Finally, in some cases, individuals can be “set up” by peers or others given the desire to please and lack of social sophistication and common sense. There are some case reports, mostly British, suggesting some potential for violence, although in our experience this is, in fact, rather rare. In general, our experience is that adults on the autism spectrum are more likely to be victims than to victimize others.
PSYCHIATRIC COMORBIDITIES IN ADULTS
As we have discussed, there does appear to be an increased risk for anxiety and mood problems (particularly depression) in late adolescence and early adulthood. It remains unclear how much this reflects a more basic (and potentially inherited) predisposition and how much comes from a lifelong pattern of social isolation and rejection. We talk about some of these issues and potential interventions in Chapters 14 and 15.
A small literature, consisting mostly of case reports, does suggest some increased vulnerability for either schizophrenia or bipolar disorder (what used to be called manic depression) in adulthood. However, one major problem is the tendency of many individuals to talk without self-censoring—a phenomenon that often appears to the outside observer to be suggestive of psychosis.
Marriage
Some individuals, particularly those who are high functioning, are able to marry and have families. This seems to be more common in Asperger’s disorder than in autism, although even in autism this is observed (Szatmari, Bartolucci, Bremmer, Bond, & Rich, 1989). Family history studies also have sometimes revealed members of the family who had married but who also appeared to have problems on the autism spectrum. Several accounts of these experiences are now available and listed in the reading list; in addition, books outlining specific support and coping strategies for couples are now available.
CASE REPORTS
Case 1: Timothy
Timothy, or as he preferred to be called, Tim, was a 15-year-old boy who was seen for evaluation at the request of his parents, who were divorced. Tim was attending a private school and enrolled in advanced academic classes but had very few friends and poor social skills. He lived 50% of the time with each parent. One of his teachers had attended a workshop on Asperger’s syndrome given by one of the authors and then talked to Tim’s parents and suggested an evaluation. His parents significantly disagreed about the necessity of this; his father insisted that Tim was bright and gifted, and his mother insisted that he was far behind his peers socially—both were correct.
History Tim was an only child born to two very successful parents. His father was an engineer and his mother a scientist at a major university. Tim was talking by about 9 months and walking by a year. He was speaking in full sentences by 14 months, and both parents regarded him as precocious. They did report that he had some problems with both gross and fine motor coordination but weren’t at all concerned until he attended a prekindergarten program at age 4, where he was noted to have some problems with attention and getting along with peers. He also had a strong interest in astronomy and space travel that verged on being abnormal only because he was so fixated on the topic. His parents moved him to a very different and much more academic preschool program, where he did well although continuing to be somewhat isolated from his peers. His parents both mentioned, independently, that he was more interested in astronomy and space than in having friends. He had a very strong vocabulary. He subsequently was enrolled in a rigorous private academic program. Although he had occasional behavioral difficulties, he did very well academically. For the first time in primary school, he was able to make a few friends with other boys who were usually described by their peers as “geeks.” These friendships usually were not close ones, however.
His difficulties with some aspects of organization and rigidity combined with his tendency to talk a lot and be clumsy led to a series of medical evaluations. A pediatric neurologist thought he might have attention deficit hyperactivity disorder (ADHD) and gave a trial of stimulant medications, which did not seem to particularly help Tim. Other medicines tried over the years had focused on anxiety, attentional difficulties, or thinking problems and included trials of several selective serotonin reuptake inhibitors (SSRIs) and one trial of a major tranquilizer (see Chapter 15). Although his parents disagreed somewhat over how well these worked, they did feel that one of the SSRIs, given for a presumptive diagnosis of obsessive-compulsive disorder, had been the most helpful. In the early school grades, Tim received some occupational therapy privately because of his handwriting and fine motor difficulties. Interestingly, despite his large vocabulary, he also had received some speech therapy because of problems in having conversations. Both treatments had stopped before third grade.
At the time of our assessment, his parents had been divorced for about a year. As noted, Tim spent half time with each parent, who lived reasonably close to each other. There was some, but minimal, friction between them. Tim had seemed to tolerate the divorce reasonably well, being primarily concerned with the new custody arrangement.
Over the years, Tim had experienced some behavior difficulties in school. In the fourth grade he hit a teacher and was put on probation. The details of this incident were somewhat murky but apparently involved a dispute over one of Tim’s routines. Psychological testing in the fourth grade showed a 30-point discrepancy between his verbal and nonverbal IQ, favoring the verbal. Academic achievement was consistently well above age level.
Starting in the sixth grade, he switched to a new private school that he could remain in throughout high school. He developed some other special interests and achieved some prominence for his science abilities. He almost never was able to participate fully in sports or gym programs, and his schools had allowed him to skip gym to focus on his special interests. He had been enrolled in a martial arts program, where his father was proud to report he had advanced to a high level.
At the time of our assessment, Tim had returned from a summer spent at a special science camp at a major American university. He was now in the high school program (ninth grade) at his school and was doing well in many areas but struggled with English in particular. Even in his favorite classes (advanced chemistry and math), he had some troubles with organization and particularly with tests—most particularly if these were “pop” quizzes. He had some friends at school, but these were not children he spent any time with outside school. His social life mostly revolved around his special interests and his interest in chess and some computer games. He had met a number of people online, but his mother, in particular, was concerned because he didn’t seem to have great judgment and was easily swayed by these acquaintances.
As noted, there had been some ongoing tension between the parents about Tim’s problems. His mother reported that an older half-sibling by the father’s previous marriage had similar problems. She also suggested that the father himself was socially isolated. It was clear that both parents wanted the best for Tim and were very supportive, although they differed dramatically in how they viewed Tim and his problems.
Assessment Results During our assessment, Tim was a very likable boy who was hardworking and eager to please. He had more trouble with some activities than others and, when he had trouble, tended to become first anxious and then defensive about his difficulties. He was very talkative and adopted a somewhat professorial style, sometimes seeming to lecture the various staff members. He was verbose; for example, in response to the question “Who was Christopher Columbus?,” he set off on a long disquisition about who had actually discovered America, veered off onto a discussion of the role of the Spanish Inquisition, and came back to the exploits of other famous explorers. He often tried to talk himself through problems. Although very verbose, he sometimes caused himself trouble by not listening to all of the directions for a task and jumping ahead.
On the Wechsler Intelligence Scale for Children, 3rd edition (see Chapter 3), his verbal IQ was 127, while his nonverbal IQ was 89—a significant discrepancy. This particular test provided several index scores to examine specific cognitive function. On the verbal comprehension index, his score was 127, perceptual organization was 94, freedom from distractibility was 131, and processing speed was 72. If one were to assign percentile scores to these results, they ranged from the 3rd to the 98th percentile. He had trouble with tasks that involved some measure of social judgment and visual-motor coordination. On an additional test of visual motor integration, his standard score was 89.
During the speech-communication assessment, Tim was noted to have a highly superior receptive and expressive vocabulary (both about the 95th percentile). On a test that tapped more into his communicative competence, his scores were more varied. Tim had major difficulties using language to make inferences (25th percentile), reflecting significant problems in putting together information to interpret the intent of others in basic social situations. His speech was somewhat monotonic and tended to be at a high volume most of the time. He had trouble with the social aspects of a conversation, for example, in allowing his conversational partner to shift the topic. He had particular difficulties in use of eye contact and responding to gestures and tone of voice. His own use of gaze was unusual—he tended either to stare fixedly or to avoid eye contact.
During his time with the psychiatrist, Tim was noted to have a rather eccentric and one-sided social style. He enjoyed interaction but frequently commented on how he did much better with adults than other children his age. He tended to talk for long periods without giving his conversational partner a chance to talk. He did not seem to notice when, at one point, the psychiatrist got out a newspaper and held it up and started reading while Tim was engaged in a monologue about problems in the Mars Lander space program. Tim did not exhibit unusual mannerisms but was noted to be rather slow and deliberate in his movements. He had some feeling of being “left out” by other students in terms of school life, but then proceeded to minimize this. He denied feelings of depression but did indicate that he could get very anxious if unexpected things happened, particularly if there was a time pressure aspect.
Both parents were interviewed, separately, to complete the Vineland Adaptive Behavior Scales. Interestingly, although they both had their own perspectives on Tim, they gave rather similar reports of what he was capable of doing independently on the Vineland. Tim’s age-equivalent scores on the Vineland are summarized in
Figure 9.3. As can be seen, his expressive and written language skills are areas of strength for him. Receptive language and interpersonal skills were very significantly delayed (around the 5-year level), while daily living skills were, on average, around the 8-year level. Fine motor skills were also delayed (below the 4-year level).
Vineland Adaptive Behavior Scores
Age—chronological age (15 years), then Vineland Adaptive Behavior Age Equivalent Scores for Receptive, Expressive, and Written (communication areas); Personal, Domestic, and Community (daily living skills areas); and interpersonal, play-leisure time, and coping (socialization areas).
In talking to his parents and to Tim about the results, we first emphasized how impressed we were by his work with us and his clearly strong motivation to do well. We also emphasized that no single number did justice to his overall ability, which clearly ranged dramatically from quite impaired to quite advanced. When we talked with his parents, his father voiced the notion that both parents were correct—that is, that the mother’s perception of his significant social delay was correct, and so was the father’s impression of high verbal abilities. In talking about the diagnosis, first with the parents, and then with Tim, we agreed that the Asperger’s label most effectively described his history and current difficulties. We also talked about the nonverbal learning disabilities profile (see page 12) as a way of thinking about his unusual pattern of strengths and weaknesses.
We made a number of recommendations for intervention within and outside of school. Tim’s significant issues with processing speed, anxiety with time pressure, and visual-motor problems justified giving him extra time for tests and making special provisions to deal with the problem of pop quizzes. We also discussed how some of his problems with social awareness and judgment were translating not only into his interactions with peers but also into some of his academic problems (e.g., with his English class). We suggested specific work with a speech-language pathologist to focus on both communication and explicit teaching of social skills. Services of an experienced mental health individual were suggested for dealing with anxiety and monitoring medication. Recommended teaching strategies included use of a systematic, step-by-step verbal approach in dealing with new materials, with concrete verbal and visual cues and clear expectations and a focus on generalization. Explicit work on organization and effective communication was also suggested, and several computer resources were provided. A major portion of our report focused on approaches to teaching social skills, cultivating social awareness, understanding social cues, and teaching specific verbal problem-solving strategies.
Interestingly, Tim was, if anything, relieved to have a clear picture of his own strengths and weaknesses. He researched the issue of Asperger’s syndrome quite diligently and found it helpful to have a single term that helped account for some of his problems. Although he has continued to have some significant social and learning issues, he has gone on to be successful in a major college, where he is completing his junior year. He intends to go to graduate school and is living apart from his parents. He has developed some real friendships and, for the first time, has a girlfriend.
Case 2: Jane
This 28-year-old woman had recently been deinstituionalized from a residential setting where she had been placed as a school-aged child. She had a long history of autism and significant intellectual disability. Her parents had placed her in this large state program and had some, but only sporadic, contact with her over the years. As the state institution was closing, staff began to look for possible placements for Jane.
Jane was somewhat verbal and often echoed language. She was an attractive woman whose disability was not immediately obvious. In addition, she had one isolated skill—she was very good at reading. She did not, unfortunately, understand much of what she read but she did read compulsively.
In her previous residential placement, Jane spent much time in her room reading or engaged in body rocking. She did go out every day to work at the cafeteria for two hours and had a well-established routine. She was well known at the institution and had very few behavior problems.
A relatively new group home became interested in having Jane join their facility. Jane’s parents (who had been opposed to moving her in the first place but now had no choice since the state institution was closing) visited and liked it. Jane had a single visit and seemed to do well. The group home staff were impressed by her ability to read. They also were impressed by her long record of regular work and were eager to find her a job in the community. They had not previously had much experience with individuals with autism but were eager to have her join them.
Within 1 week of Jane’s move, she was having severe behavior problems. She had been taken to look for a job as a bagger in a grocery store but had had a melt-down there. At the group home, attempts to interrupt her reading or to take her on community outings were met with resistance. Staff provided her with written materials, including a schedule and plans for the day, but this seemed minimally helpful. Jane’s behavior difficulties led her to break several items in the home, and she began to slap herself compulsively. Her parents and the group home staff were worried and contacted her (new) doctor, an internist, who was surprised she wouldn’t let him examine her. The group home rightfully felt that the situation was going downhill rapidly and sought a consultation from one of us.
In looking at Jane and her history and recent events, it was possible to make a number of recommendations. In the first place, we suggested that either the staff needed urgent training about dealing with behavior problems in a person with autism or they seek a group home with more experience in the area. Second, we pointed out that although Jane seemed to read, her understanding of what she was reading was pretty minimal and hence couldn’t really be used to organize her. Instead, we suggested a number of visual aids and other strategies, including a large bulletin board in her room that displayed the week in pictures. This made it possible for staff to review with Jane what would be coming next, what she had done before, and so forth. Rather than engage in so many new things at once, we suggested that an initial step might be for Jane to have jobs around the house and then be given periods of time where she could be allowed to be on her own (with some supervision and observation, of course). Given that she had a number of bruises from self-injury, we also suggested a trial of medication once she had been seen by a local pediatrician who was experienced in examining individuals with autism (and indeed her physical exam was fine). The medication produced a fairly rapid and dramatic decrease in the problem behavior, although it was coupled with a number of other recommended changes (ideally, one would like to change only one thing at a time, but this was an emergency). Rather than force Jane into community outings in a range of settings, we suggested work with a consultant who could think about vocational and community issues. This individual realized that Jane had considerable sensitivity to noises and that outdoor activities worked well for her. Eventually, things stabilized for Jane in her new placement. She now works outdoors in a supported employment situation in a local park. She is variably involved in community activities with other residents of the group home but has done better as she has adjusted to the new situation. Medications could be tapered and then stopped after some months. Although Jane remains relatively impaired, she has had a much better quality of life with minimal behavioral difficulties. She continues to read avidly, although her understanding of what she reads remains relatively limited. However, she has taken to the use of visual prompts and schedules, and levels of daily living skills have improved significantly.
Jane’s history points out the pitfalls of rapid and poorly considered moves and the importance of supports appropriate to individuals with autism. Although her original placement (in a state-run residential facility) was unfortunate in many respects, it had been something she was familiar with and had mastered. Her new group home’s enthusiasm should have been a bit tempered by the lack of experience in dealing with individuals with autism. In some respects, the crisis created by her transition has, in the end, been a productive one.
Case 3: Ned
Ned is a 30-year-old who has achieved a large degree of independence without being totally independent of his family. He is a man who had a fairly classic history of autism. His parents noted troubles early on but were told to “wait and see.” They started getting services only after he was nearly 5. Ned did start to talk just before his fifth birthday. Although his parents were initially given very pessimistic projections for the future, they refused to give up on him. He was enrolled in school and received many special services. In addition to the benefit of having concerned parents (and a large extended family with several brothers and sisters), Ned benefited from a great deal of community involvement. This came from his family’s church and their prominence in the community, as they had, for two generations, operated a local restaurant.
Ned made important, if somewhat slow, progress in elementary school. IQ testing revealed nonverbal abilities in the average range, but verbal skills were close to the intellectually deficient range. Fortunately, with many siblings and an involved family, Ned was included in a myriad of activities and was comfortable with new situations and people as well as being out in the community. His daily living and adaptive skills were particularly a source of strength for him.
In adolescence, Ned developed an awareness and concern about being “different” from other children. Fortunately for him, rather than becoming depressed, Ned used this motivation to work very, very hard to be like other children. He was able to be more or less totally included in high school with some special supports.
In the middle of high school, he and his parents started the process of transition planning. Unlike his siblings (all of whom went to college), Ned strongly indicated his preference to enter the family business. He loved the routines of the restaurant and particularly liked to cook. Accordingly, he was switched to a vocational school where the emphasis was on real-life skills and, for Ned, on learning to cook (he also enjoyed being one of the few boys in the cooking classes). On completing high school, his parents tried to enroll him in a local community college, but it quickly became clear that Ned very much wanted to work in the restaurant, so this was arranged.
Ned started at a fairly low level, doing dishes and food preparation. As time went on, he began to be a more independent employee and developed some special areas of expertise. As a cook, he was meticulous and very consistent (both real pluses when it comes to restaurant work). Although he had some trouble with math, once he had learned a recipe, he was readily able to repeat it without change. He also enjoyed the camaraderie of the kitchen staff, and the fact that his father was around much of the time was also a plus.
Once he was settled into his job at the restaurant, Ned decided he should live apart from his parents. He found a garage apartment about five blocks from his family home. Although he had some challenges initially in terms of organization, he quickly became a good tenant and enjoyed being somewhat independent from his parents. In his mid-20s, he became aware of feeling more dependent on his father, who usually drove him to work. Ned saved money for a car and, more importantly, his parents found a driving instructor able to work with a special needs student. Ned was rightly proud of obtaining his driver’s license and having his own car (at age 25). He was careful not to drive on freeways or in places where there was a lot of traffic.
In addition to his nearby parents, Ned has several siblings in relatively close proximity. He can walk to his church and attends mass on a regular basis and is active in a children’s program. He is well known and accepted in his community. He has occasional difficulties in response to change but generally has made a very good accommodation to adulthood.
At the time of this writing, Ned has just purchased a condominium closer to the family business. His parents have been pleased to have him as an employee. He is the only child in the family to have gone into the restaurant business. They have made arrangements that his siblings and he will inherit the family business and have discussed, in detail, their wishes for his siblings to remain involved in Ned’s life in the future.
The delay in diagnosis in Ned’s case was unfortunate. However, he had the good fortune to have a committed and involved family and community. He also developed, as sometimes happens in adolescence, a strong motivation for learning new skills and “fitting in.” For most purposes, Ned is now an independent adult. He has occasional times of relying on his parents for help or support. He has become an active member of his community and can take pleasure in his success.
SUMMARY
Children with autism and related conditions grow up to become adolescents and adults. We want them to live as full and independent lives as they possibly can. As with other children, adolescence can bring changes and be a time of growth for some and challenge for others. Helping adolescents and young adults with ASDs cope with sexual feelings is important. Teaching about privacy, intimacy, social norms, and different kinds of relationships should start in childhood.
Fortunately, the overall outcome in autism appears to be significantly improving. This probably represents the combination of several factors: better (and earlier) diagnosis, early and more appropriate intervention, and (possibly) expanded definitions of autism. A number of adult vocational options, ranging from college to supported employment, are available, and more and more are living independently. Even when adults aren’t fully independent, they can live rewarding and fulfilling lives.
It is important for parents to be aware of the changes in entitlements that come with age, particularly in the transition from school age (basically under 21), where education is a right, to older ages, where entitlements to services can vary dramatically from state to state and where, for many problems, the applicable set of laws relates to the mandate not to discriminate based on disability. In college, technical, vocational, and other programs, it is essential that the program be informed—usually by the student—of any special needs related to disability.
For more and more adults, independent living is now possible, and many individuals, particularly the most cognitively able, are involved in family life—sometimes having long-term relationships and families of their own. Even when this is not possible, the goal should be as much independence and self-sufficiency as possible. Planning for adulthood starts many years in advance. In addition to cognitive and language abilities, self-care skills (see Chapter 6) are critical. For many adults, there is a significant gap between overall cognitive ability and capacities for adult independence and self-sufficiency.
■ READING LIST
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Perry, N. (2009). Adults on the autism spectrum leave the nest: Achieving supported independence. London: Jessica Kingsley.
Plass, B. (2008). Functional routines for adolescents & adults—community. East Moline, IL: LinguiSystems.
Plass, B. (2008). Functional routines for adolescents & adults—home. East Moline, IL: LinguiSystems.
Plass, B. (2008). Functional routines for adolescents & adults—leisure & recreation. East Moline, IL: LinguiSystems.
Plass, B. (2008). Functional routines for adolescents & adults—work. East Moline, IL: LinguiSystems.
Robison, J. E. (2007). Look me in the eye: My life with Asperger’s. New York: Three Rivers Press.
Rodman, K. E., & Attwood, T. (2003). Asperger’s syndrome and adults . . . is anyone listening? Essays and poems by partners, parents and family members. London: Jessica Kingsley.
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■ WEB SITES
Videos and materials available from James Stanfield Company (P.O. Box 41058, Santa Barbara, CA 93140; 800-421-6534/
www.stansfield.com):
Circles 1: Intimacy & relationships (social boundaries)
Circles 2: Stop abuse (recognize and avoid sexual abuse)
Circles 3: Safer ways (avoiding sexually transmitted diseases) No-Go-Tell The Gyn Exam
■ QUESTIONS AND ANSWERS
1.
My daughter is supposed to have her first gynecological exam soon. Do we need to schedule this for the hospital where she can have anesthesia? As for other developing young women, at some point the pediatrician or family doctor of an adolescent or young adult with an ASD may recommend that parents consult with a gynecologist. This may be routine—as the teenager approaches adulthood and needs regular care—or it may be because there is some problem. Parents should not assume that the adolescent or young adult with an ASD will absolutely have to have anesthesia. Probably, it would be best to make an appointment for an initial visit with the gynecologist to let the adolescent or young adult with an ASD meet the doctor and have a discussion about what approach makes the most sense. When parents schedule the visit, parents should be clear about the adolescent’s or young adult’s having special needs so that a longer time can be given if it is needed. Often, mothers may decide to have their daughter use their own gynecologist, in which case parents can discuss this issue with the doctor at their own checkup. See the reading list for some resources (including picture books) that may help in preparation for the visit to the gynecologist.
2.
Our 14-year-old has made some nice gains in his cognitive and communication skills, but has a lot of trouble with self-care. His father still needs to get him into the shower. Is there some way we can work on his self-care skills? Absolutely. Parents might want to talk with the school psychologist to get an assessment of current levels of self-care (adaptive) skills. There are several very good tests that can be used to do this, and, in conjunction with any cognitive or IQ testing already done, the psychologist may be able to generate for parents a list of reasonable goals. The issue here is to pitch things at the right level for the adolescent or young adult with an ASD, keeping in mind that it is better to start a little slower and with things that are easier, and then build on success as parents move along. An experienced teacher or person who works with developmentally disabled children may also be helpful. Sometimes it works well to have someone other than the parents involved. For example, one young man we know had pretty bad self-care skills but was really interested in fitting in at school. He took up swimming with the supervision of a college student who was able, fairly quickly, to get him up to speed! This activity helped him learn about getting dressed and undressed, as well as showering before and after swimming—one of the “rules of the pool.”
3.
Our 15-year-old has autism but is very high functioning. He is now mainstreamed for all classes and doesn’t get special help in school. We are planning on moving to a new district. Can we just assume that this district will automatically have to give him services? An excellent question. Even though autism is included in the legislation that mandates services, having a diagnosis does not, necessarily, confer eligibility for services. This needs to be established, and sometimes the school can oppose it.
4.
My 18-year-old with Asperger’s has a girlfriend for the first time. Are there any good resources I can steer him toward? There are several good books in the reading list, including the book by Aston and the book by Edmonds and Beardon on relationships of adults with Asperger’s. The book by Duncan and Myles (2008) is also excellent for teaching rules about social situations. There are also some good resources on Asperger’s and sexuality; for example, see Henault and Atwood (2005).
5.
My adult son with autism is interested in getting a job. He is a good worker and very high functioning, although I think he misses a lot of social cues. Are there any good books about employment? There are several excellent books about employment of adults on the autism spectrum listed in the reading list. Meyer and Atwood (2001) have a book on employment of adults with Asperger’s. Also see the book by Howlin (2004).
6.
Our daughter with autism is more than a little bit a “couch potato.” Are there any ways to get her more active? Yes, there are some good resources. See the book by Coyne and colleagues (1999) on leisure time and recreational activities.
7.
Our son with Asperger’s really wants a job. Are there any good resources? You didn’t state your son’s age. If he is still in school, you should try to use some of the school-based resources. If he is out of school, state agencies and state services may be helpful. There are several good books on helping more able individuals obtain employment; for example, the book by Meyer (2001) and the book by Smith and colleagues (1995) are good resources.
8.
Our 13-year-old has autism, and things were going pretty well until adolescence hit. He has had a lot more difficulty with attention and impulsive behavior. Our pediatrician tried stimulant medicines, but these seemed to make things worse. What else can we try? There are a number of different medications—depending on the specifics of the situation of the adolescent or young adult with an ASD—that could be tried. Alternatives to stimulants include some new medications that work differently for attentional problems; sometimes medicines like the SSRIs are used. You should talk with your doctor about all these options. (See Chapter 15 for more information about medications.)
9.
Our daughter wants to go away to college. She has been able to make it through high school and does well academically; it is the social and independent living issues we are concerned about. What steps can we take in selecting a college or post-high school program? College is a major decision for everyone, and parents of all children need to be involved in the process. More and more children on the autism spectrum are going to college; this is great but presents some challenges for the person, family, and college. First, do your homework, and then go and visit some colleges that seem to be good fits for your daughter and her interests and needs. Keep in mind a couple of things: A smaller program may be better, although some larger state schools have good support programs. Your daughter needs to identify herself as having special needs if she wants any special provision made for her in college (e.g., relative to tests, help with notes, etc.). As we talked about in this chapter, it is important to remember that the laws relating to colleges are different than those mandating public school education. Also see the reading list for some good books on college programs. Finally, keep in mind that there are now a number of transitional programs around the country (there is a list at the Yale Child Study Center web site,
http://childstudycenter.yale.edu). These vary in terms of what they provide. For some students, junior college and living at home can also be a good option.
10.
Our son turns 18 in a few months. He is already a client of the state department of developmental disabilities. Does this mean we automatically are his legal guardians? Not at all is the short answer. It is very important to realize that becoming an adult, under the law, is generally an automatic thing. There are no automatic exceptions for disabilities. You should speak with a lawyer now about the steps you need to take to become a legal guardian.
