HIGH-FUNCTIONING AUTISM SPECTRUM DISORDER IN LATE ADOLESCENCE AND ADULTHOOD
I have braved raging winds.
I have survived the strongest storms.
I blew through the valley of paradise.
I have been soaking wet.
I have survived.
I am who I am!
—An adolescent with ASD
Growing up presents many new challenges for children with ASD and their parents. Junior high and high school bring a more complex and less structured educational environment, requiring the child with ASD to make frequent transitions, such as moving from class to class, and to develop greater independence and flexibility. The difficulties that children with ASD have with organization and other executive function skills (discussed in Chapter 7) can make it especially challenging for them to achieve full independence. Social demands increase with age too. In early adolescence the desire to conform to social norms peaks, and this can be particularly hard for a child who is inherently different from his or her peers. This may be the first time, in fact, that many children with ASD become aware of how different they are from other children. On top of all these new demands, teenagers are expected to behave more maturely and to take on increasingly complex social and emotional roles in relationships.
THE GOOD NEWS ABOUT GROWING OLDER
Fortunately, adolescence and young adulthood have a positive side too. By this time, some people with ASD, especially those who have received appropriate treatment for several years, have a solid set of tools for navigating social situations. Greater familiarity with the “rules” of social interaction can help them fit in and draw less negative attention from their peers than during childhood. At the same time, the typically developing adolescents and young adults around them are maturing and developing greater acceptance of differences in others. You can’t count on tolerance, of course; cruelty among teenagers is widespread and well publicized. As a parent, you will want to continue to deal with any teasing and bullying in the ways suggested in Chapter 8. But, in general, these sorts of problems do decrease in high school and drop to very low levels in adulthood.
There are no guarantees that this will work for your son or daughter, but eccentricities and idiosyncrasies can sometimes be a social asset in high school. Take Charles, for example. In grade school, his tendency to question authority and challenge the logic of rules frequently landed him in the principal’s office. His constant disruptions of class to argue about a seemingly arbitrary rule or assignment annoyed his classmates and made him unpopular. But when Charles got to high school, he was suddenly surrounded by others who felt it was their duty to point out to authority figures the errors in their logic and the injustice in their expectations concerning students. Charles was still viewed as odd by his peers, but he was also somewhat admired as the class maverick.
Another advantage of maturity is that in adulthood it becomes more acceptable to arrange one’s social life around certain interests. Many typical adults socialize largely with coworkers, for example, and conversation often centers on office happenings or the subject of the work that they all have in common. For people with ASD who have chosen occupations dealing with their particular interest, this means less talk about unfamiliar or uninteresting topics and potentially less social anxiety or discomfort. Because adults have limited leisure time, it’s also very common for them to seek out people with similar interests, whether through clubs, over the Internet, or via other avenues. This, too, can help people with ASD maintain a social life that is more rewarding than daunting. For example, as a child, Ellie’s interest in the Civil War was considered odd by her peers. However, as an adult, she had an active and successful social circle among individuals who enjoyed reenactments of historical battles as much as she did. Indeed, she was well respected for the breadth and depth of her knowledge on the topic.
Perhaps the most important advantage of maturity in adolescents with ASD (as well as many typical teenagers) is that increased autonomy brings a greater opportunity to shape their own experience and seek a “niche” in the world that is more compatible with their own strengths and interests. Robin, a young woman with ASD, was frustrated throughout childhood by others’ lack of appreciation of her interest in photography. Her parents and teachers would continually try to get her to set aside this fascination to do schoolwork, and kids were always trying to escape her long speeches on photographic techniques. But in high school Robin gained both social stature and self-esteem when she joined the yearbook staff and found everyone hounding her for a chance to occupy some space in her viewfinder. Robin’s family wisely capitalized upon this interest, helping her eventually find employment as a photographer’s assistant.
Because maturity brings the freedom to choose your own level and type of socialization, teens and adults with ASD also have a wider range of social options than they did as children. Some—especially those who have had some social success and learned to find interpersonal interaction rewarding in itself—choose to socially “mainstream” themselves and stick with the path of “typical” socialization. For others, social activities still feel more uncomfortable than rewarding, and these young men and women may continue to favor solitary activities. If, after years of coaching in social skills, your child chooses a solitary path in adolescence, you may feel as if you’ve failed. Or you may worry that the happy adult life that was your ultimate goal for your child may never be reached. In that case, try to remember that whatever level of socialization your child is most comfortable with is the one most likely to make him happy. As a parent your job is to help provide your child with the skills to socialize, but ultimately it is his decision how to use these skills. This is true for individuals both on and off the autism spectrum. All parents face the challenge of balancing what is best in their own eyes with the personal preferences of their child. Most parents hope their child will lead a happy and productive life. It’s important to remember that your definition of a happy and productive life may not agree with your child’s, particularly in terms of the amount and type of social contact.
Lauren, whom we first discussed in Chapter 1, had very little desire to socialize in high school. Her mother was terribly disappointed when she declined a classmate’s invitation to the prom. But when Lauren entered college, she met a “soulmate,” another loner who was also majoring in physics and who shared her love of movies. She and this young man spent many weekend evenings together in the movie theater. When her mother asked what she and her friend talked about together, Lauren said, “Nothing.” When her mother asked if they had ever gone out for dinner before the movie or if she had ever asked her friend in for a cup of coffee, she answered, “No.” Lauren’s mother tried to give her scripts and other support to take the relationship to another level. But over time it became clear that Lauren derived a great deal of satisfaction and pleasure from the relationship as it was. Her mother eventually could see, somewhat wistfully, that even though Lauren and her friend did not have a typical adult romantic relationship, she was content and far more social than she had ever been.
Another bit of good news about adolescence is that it may well be easier for your child with ASD than you fear—and it may even be easier than it is for a typically developing child. Many individuals with ASD are so comfortable with adults and so agreeable to rules that there is little of the rule breaking, limit testing, dangerous behavior, and questioning of authority that are so much a part of typical adolescence. We aren’t saying that there won’t be challenges, but it is fairly rare for the parents of teens with ASD to have to face green hair, body piercings, and drug use.
CRITICAL ISSUES DURING ADOLESCENCE AND ADULTHOOD
Teenagers and adults with high-functioning ASD face many of the same challenges that they confronted in childhood. For parents, this means that the ideas you’ve been using to help your son or daughter will still help. Many, perhaps even most, people with ASD continue to need support later in life, although the amount needed may well diminish over time. As you did when your child was younger, you should continue to play to his or her strengths whenever possible, capitalizing on excellent memory or visualization skills to make it easier for your maturing child to navigate higher education and the workplace. Most of the accommodations we recommended in Chapter 7 will continue to help in high school and college. Many of the strategies we offered in Chapter 6 to make home life easier will benefit your teen or adult child when she lives in a different residential setting. Most of the suggestions for easing social awkwardness and making friendships discussed in Chapter 8 will still apply.
But, you may say, my child has just gone through a huge hormonal shift. She now has a job. The rest of the world’s expectations are higher now that she is older. Can we really go on as if nothing has changed? In fact, some things do change for people with high-functioning ASD as they mature. You’ll need to emphasize independence and functionality more than ever. You have to learn how to negotiate a new set of situations and settings so you can help your child do so. It becomes a bit harder to strike a balance between providing support and letting your teen or adult child struggle to figure things out for herself. In this chapter, we’ll help you understand when the changes you see in your child and the new struggles you encounter require a new approach.
As any parent of a teenager knows, adolescence is a challenging time. Naturally it is complicated by ASD. In the following discussion we’ll tell you how you can take your child’s disorder into account in handling various adolescent social issues. Just as important, however, we’ll try to help you see when it’s ASD that is causing your child to behave the way he is behaving and when it’s adolescence itself.
You’ll see in this chapter that we believe your child will still need a good deal of support and structure. If this seems discouraging, please understand that much of what we know about adolescents and adults with high-functioning ASD comes from the study of individuals who were diagnosed as teens or adults. These people have not had the benefit of the early and prolonged treatment that your child has probably had, and so naturally they require more structure and intervention than your child might, if she is quite high functioning and has had many years of intervention. Now that high-functioning forms of ASD have been being diagnosed for several decades, the field is developing an increasingly clear picture of what adults with ASD who have had early intervention truly need. For now, however, you will need to sort through the following recommendations to figure out which are necessary for your teen or adult child.
As your child has grown, you (possibly with help from teachers and therapists) have served as facilitator, translator, and guide in a world that has often been difficult for him. You have been an advocate, doing whatever it takes to ensure that your child is provided with the services he needs. You’ve reinterpreted hundreds of misperceived social slights and smoothed over many inadvertent social faux pas. You have been a person to hug after a rough day at school and to extend a hand to high-five after a successful social event. Despite your incredible efforts and successes, with growing maturity your child needs to find support elsewhere. The more independent your son or daughter becomes, the less likely you will be there to assist.
Sometimes parents feel that they should take a less intrusive role in the life of their child as she gets older. What seemed acceptable to help with at age 10 can seem infantile for a teenager. For example, perhaps you’ve walked your child to school every morning but begin to wonder if that is still appropriate when she enters high school. Some adolescents with ASD will continue to want this kind of support. Let your child’s individual needs and wishes dictate your behavior.
But some teens with ASD begin to demand independence from their parents and view the support that they see as “interference.” Although it is likely that you will begin to see this natural need to develop independence in your child, this need will likely emerge a bit later than for typically developing teenagers. But if your teen with high-functioning ASD does begin to begrudge the support you are providing, you will have to figure out how to respond. Your teenager or young adult will likely still need advice, moral support, sympathy in times of difficulty, and shared joy after victories. How can you continue to provide the structure that you believe your adolescent needs, but in a way that will be accepted and that is constructive?
One way that you can appropriately alter your support role as your child grows older is to recruit “helpers” in the community or the natural settings your child is encountering. Support may be provided by a friend, a case manager, a therapist, a coworker, or different people in different settings. Now, while your child is just entering adolescence, is the time to help your child understand the need to actively recruit people to turn to in times of trouble. Your child might end up needing continuing professional support, such as a job coach, but even if he does not, having support people in multiple environments will alleviate much of his anxiety.
John’s mother was delighted that her son was joining the high school swim team. However, she also knew that locker rooms and team bus rides would present a host of confusing social situations for her son to decipher. She mentioned to John that she thought it would be a good idea for him to have a “go-to” person in case he became confused or uncertain in that setting. He liked the assistant coach and felt comfortable talking with him, so they agreed he was a viable mentor. Together they wrote a note describing how they would like him to be available for assistance. John showed it to him after practice the next week. The coach readily agreed. John found that over the course of the season his “mentor” was invaluable, helping him understand that hugging other teammates was appropriate only at certain times, that pointing out team fouls to the referee was unnecessary, and that several of the more colorful locker room quotes were better left unrepeated in the following day’s recounting of the game.
John’s mother’s use of the term “go-to person” was quite intentional. When you discuss the need to identify support people ahead of time, it’s important to respect your son or daughter’s need for independence and self-reliance, as these are critical aspects of identity for any adolescent. Instead of using terms like “helper,” employ “mentor” or “coach” to stress your child’s expertise rather than to imply an absence of skill. Brainstorm with your child the many different situations where an “expert opinion” might be helpful, such as at school, in a job, or in an after-school club. Pick a person that your child would feel comfortable seeking advice from in each setting. To make things more official and to be certain that the support person is willing to accept this role, explain to the candidate that you would like him or her to be the person your child can approach with any questions or confusion in that setting, as John and his mother did. One young adult with ASD worked out a similar arrangement with a supervisor at his place of employment. Whenever things got a little confusing and he wasn’t quite sure how to handle them, he knew this person would be ready and willing to respond to his queries. In fact, this “go-to” person turned out to be so indispensable that a backup was selected in case the supervisor was unavailable.
Disclosure
If your child’s symptoms lessen with age, as often happens, and if she branches out into new settings, the question of disclosure of your child’s disorder will come up more and more often. At first you’ll participate in the decision of whether or not to tell others that your child has ASD. For example, it will be your call to determine whether or not to let the camp counselor, sports coach, or neighborhood parents know that your son or daughter has ASD. Eventually, however, the decisions will be your child’s to make, so introducing the issue and the decision-making process with her in early adolescence is good preparation. Your child will need to decide whether or not to disclose the diagnosis to employers and coworkers, friends and acquaintances, and perhaps even romantic interests in the future.
The pros and cons of disclosing will vary by context and circumstances, but you and your child should be aware that there are many benefits to sharing a diagnosis of ASD and relevant information with people with whom your child will have contact. In many situations, like school, organized groups or sports teams, and work settings, disclosing the challenges of ASD can help your child gain understanding from others or lead to special accommodations. It can head off misunderstandings about any unusual behaviors or perceived aloofness. It can even relieve the person of worry about having to conceal symptoms or about being on the fringes of the group.
Marcus paced across the foyer in his parents’ home. Yesterday had been his first day at a new job at a computer company. For the first time, Marcus was working independently, without a job coach. Marcus is 22 years old and has high-functioning ASD. He was worried that his behavior had come across as odd to some of his coworkers while he was being given a tour of the office. His mother noticed his anxious behavior and asked him what he was worrying about. When he explained the situation, his mother offered to hold a meeting in which she would explain his diagnosis to his coworkers. Marcus was initially resistant. He had worked so hard over so many years to overcome his diagnosis. His mother had an idea that was more acceptable to him. They worked out a short script that Marcus could use when he met a new coworker or was worried about an interaction. The script went like this: “I have a disorder called autism spectrum disorder. Sometimes I’m not sure what to say or do in conversations and social interactions. I apologize if my behavior seemed rude. If you’d like to learn more about autism spectrum disorder, I’d be glad to discuss it with you.” Marcus had a great memory and had little difficulty memorizing the script. In the future, Marcus wound up using this approach to disclose his diagnosis to several of his coworkers. He was pleased to discover that they were open and accepting of this information and were eager to learn more and assist him in any way possible.
Despite Marcus’s positive experience, there can be some risk inherent in disclosing as well. Disclosure may invite prejudice among those who inappropriately view people with ASD as incapable of relating to others and making a meaningful contribution. As public awareness and understanding of high-functioning ASD has increased in the last three decades, this is becoming much less likely. There is even a chance, if your child’s symptoms are subtle, that others may think he is making excuses for inappropriate behavior. But, in a broad sense, disclosing information about your child’s diagnosis helps everyone with ASD by normalizing the phenomenon and helping others appreciate how common the disorder is and how capable those with it can prove to be. One rule of thumb we suggest is that if your child’s differences would be obvious to others anyway, then providing an explanation for them by disclosing the diagnosis may well outweigh any perceived risks, such as stigma. On the other hand, if your child’s symptoms have become so mild as to be mere “quirks” or personality traits that do not impair functioning, then disclosing the diagnosis might not be beneficial. Liane Willey, an adult with Asperger syndrome, has made the decision about disclosure many times and has included a number of important factors to consider in her book, Pretending to Be Normal, that you may also wish to access (see the Resources for more information about this book). Stephen Shore, another individual with high-functioning ASD and advocate, published a collection of passages regarding experiences with disclosure titled Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum. Also be aware that if there are substantial negative effects of disclosing the diagnosis in a work or educational setting, you may also wish to investigate your child’s legal rights under antidiscrimination laws.
Once a decision has been made to share information about your teenage or adult child’s diagnosis with others, together you must decide on an appropriate strategy to convey this information. This will no doubt vary according to who is being informed. For some individuals, like Marcus, a well-rehearsed speech is an appropriate first pass at disclosure. For others, it can be helpful to provide your child with cards, much like “business cards,” that explain what ASD is. These cards can be carried in a wallet, pocket, or purse and handed to another person in an awkward situation. For example, the card might state, “I have Autism Spectrum Disorder. This is a disorder that affects my sense of social understanding, and sometimes I am uncertain how to behave or speak in social situations. Thank you for your understanding.”
It is likely that many people, particularly those who will continue to have close contact with your child, will be interested in learning more about ASD. You might provide these people with some literature about ASD or some first-person published accounts, such as Pretending to Be Normal or Look Me in the Eye (see the Resources at the end of the book). Another option, if the person is interested in devoting some time to gain a deeper understanding, would be to take the person to an ASD meeting or conference. For individuals who wish to disclose openly and help others feel comfortable asking about ASD, you might display relevant materials, such as books about ASD, in a prominent place in your home. This opens the door for discussion but leaves whether to broach the subject to the visitor’s discretion.
A more personal way to teach others about ASD is to describe what it means in your own terms and share what the experience has been like in your family’s particular case. This information can be conveyed via a medium comfortable for you or your child, such as a story, a poem, or a conversation. For most families with a child with ASD, the decision to share additional information is a sensitive one. They would like to help others understand, but they are fearful of imposing or appearing pushy. We recommend making it clear to people that you have information and other opportunities for them to learn more about ASD without making them feel obligated to learn about the diagnosis.
A disclosure card—or rehearsed script—can help your young adult with ASD reveal the disorder:
“I have ASD. This is a disability that affects my sense of social understanding, and sometimes I am uncertain how to behave or speak in social situations. Thank you for your understanding.”
Even parents with normal children often find sexuality a difficult subject to discuss, yet it’s far too important a topic to avoid. Most adolescents between 13 and 18 report frequently thinking about sex, and 50% say they engaged in sexual intercourse before age 18. Adolescents with ASD may lag in emotional or social development, but for many their biological drives develop on time. Given the reticence about personal matters so typical of those with ASD, it is even more important for you than for a parent of a child without ASD to approach your child about this topic. Sometimes parents of children with ASD wrongly assume that delays in social development and interests give them permission to delay conveying information about sexuality and puberty. We recommend, however, that you deliver this information on the same timetable as, or even earlier than, you would for children without ASD. In fact when it comes to discussing sexuality, it’s not a question of if but of when. The answer, we firmly believe, is early. Don’t put off this essential discussion until a crisis occurs. Important issues to address include sexual intercourse, birth control, nocturnal emissions, breast and testicular self-examination, masturbation, and menstruation.
Be specific and concrete in your discussions of sexual development with your child. Provide factually accurate information in a comprehensible and straightforward manner, perhaps referring to a book with illustrations. For example, set up a concrete system and schedule for hygiene related to menstruation. In addition to showing your daughter the materials she will need to use and how to use them, you might also want to furnish her with pictures or photographs showing the order in which each step is carried out. Be specific about how often she will need to change her pad or tampon. Help her use timers or alarms on her mobile device to remind her when she needs to visit the bathroom. If your daughter’s menstrual cycle is regular, mark on her calendar or set monthly alerts to indicate when she will need to carry supplies with her. Write out a script that she can use in class to ask to use the restroom.
Masturbation is another important topic to discuss with your adolescent. Masturbation is a natural means of exploring developing sexuality. Teach your child very specific rules in terms of when and where masturbation or the discussion of it is appropriate. One adolescent we know was so excited when he discovered masturbation that he began telling all of his friends about his wonderful discovery. His parents certainly wished they had thought to discuss the topic with him before he brought it up. Be alert to the availability of graphic images and videos on the Internet. Most Internet browsers are equipped with parental controls to prevent visitation of pornographic websites. This is a helpful option, but it is not foolproof. Even with these safeguards in place, we recommend that you discuss with your child the kinds of information that you are comfortable with him accessing on the Internet. This may vary from family to family. One mother bookmarked artistic nude websites for her teenage son, preferring to provide him with access to these images than have him stumble upon more graphic or hard-core imagery. Though this was the right decision for this family, it might seem shockingly indiscrete to others. As with the other topics we have discussed, adhere to your own values and comfort level, but be explicit and concrete.
Since, particularly in adolescent boys, sexual arousal can be unpredictable but conspicuous, it is also helpful to work out a plan of action to help your child manage such circumstances. For example, you might tell your son that when he has an erection, he should remain seated or go to the restroom. One precaution to take when the teenage years of spontaneous erections approach is to make sure your child does not wear certain types of pants to school. Sweat pants, for example, can make sexual arousal extremely noticeable.
It’s important not just to broach the subject of sexuality with your child but also to revisit it periodically to ensure that your child thoroughly comprehends the social rules surrounding sexuality. The best way to do so is to make sure that your child knows it is OK to talk with you about these matters. It may be necessary to approach a child who is not forthcoming every few months for an official update. In a worst-case scenario, misunderstandings in this area could lead to individuals with ASD becoming either unwitting sexual offenders or vulnerable to sexual victimization. If you find these topics too uncomfortable to broach, enlist the aid of a pediatrician, psychologist, or other health professional.
Romantic Relationships
Many parents have difficulty imagining a child with limited social interest eager to engage in intimate romantic relationships. People with ASD vary greatly in their level of interest in romantic relationships. For some, interest in romance and sexual relationships develops along with physical sexual development, much as for their typical peers. For others, the complex emotional aspects of romance may delay interest in intimate relationships until late adolescence or adulthood. Some of our patients have developed romantic interests and later relationships or marriages. These relationships succeed when they are mutually beneficial—the partner with ASD receives support, and the typical partner gets a companion with remarkable honesty, faithfulness, and devotion. When they don’t succeed, it is usually a consequence of the difficulties that people with ASD have with emotional intimacy, intrusive interests and preoccupations, perspective taking, and compromise.
Other people with ASD never develop an interest in romantic relationships. For many, such as Temple Grandin, the option of living a productive life without a partner is more appealing and less complicated. Others may marry fellow people on the autism spectrum, and others still may find a loving relationship with someone who is typically developing or has a different challenge. As a parent of a child with ASD, your mentoring can help your child understand relevant issues and make informed choices in this area as an independent individual.
As your child develops sexual feelings, she will likely demonstrate sexual interest in others and develop a desire for intimate relationships. Recall your own experience of the anxiety that teenage romances provoked: the uncertainty, the confusion, and the bewilderment. For a child who has difficulty understanding more basic social interactions, these complexities of romance can be overwhelming. You can make this unfamiliar territory more comfortable for your child by providing concrete rules for dealing with people to whom she is attracted. Provide examples of appropriate and inappropriate behavior and how they might affect the person to whom they are directed. Your child may be highly motivated to do this exercise in perspective taking, because no one wants to make the wrong impression on the individual on whom she has a crush. Potential problem areas in which it is crucial to establish explicit guidelines include physical contact, staring, following, phone calls, visits, and types/topics of questions. Although few adolescents are adept at figuring out all the signals for returned interest or disinterest, this area may be particularly difficult for children with ASD due to their difficulty in interpreting subtle social cues. Offer your child some basic guidelines for interpreting behaviors that may indicate mutual interest or a lack of interest. This will be important in ensuring that your child’s romantic leanings do not cause others discomfort.
Technology has introduced a variety of opportunities and challenges that did not exist in your youth. Mobile phones equipped with cameras and videos provide many benefits for your child but also risks for making bad decisions or being taken advantage of. Establish explicit rules regarding the content of text messages or the capture of pictures and videos. The social vulnerabilities associated with ASD can lead teens with ASD to be gullible. Make clear that, no matter how much they trust or love another, they should never take or allow others to take pictures or videos of a sexual nature. In the past, teenage foibles might have lived only in the embarrassed memory of those involved, but now a single impulsive action can live forever on the Internet.
Angelo developed his first crush when he was 14. The object of his admiration was a sweet young woman named Ella. Although she understood that he had ASD, and she liked him as a friend, she soon grew uncomfortable with his courtship. He would frequently interrupt her when she was in conversation with other people. She often felt uncomfortable because he gazed at her for long stretches of time. When she brought it to the attention of a school authority, Angelo was mortified and wanted to figure out what he was doing wrong. He and his parents drew up some guidelines to help him make sure his behavior was appropriate. They made clear that it was not appropriate to touch Ella, and they delineated situations in which it was not appropriate to approach her, such as when she was in midconversation or was reading in study hall. Looking toward the future, they made concrete rules (based on number of seconds elapsed) about what constituted staring versus casual eye contact. They also discussed some telltale signs that another person was or was not interested in one’s advances. Angelo was disappointed that his relationship with Ella was not to be, but he looked forward to future romances.
Self-Awareness, Self-Esteem, and Identity Development
Adolescence may be the first time that children with ASD begin to form an identity by pondering questions like “Who am I?” and “Where do I fit in?” and “What will I become?” These aspects of adolescent development pose a significant set of challenges for young people with ASD.
One such area is definition of self-concept. Research suggests that boys and girls use different strategies to determine their own self-concept. For girls, self-concept often relates to perceptions of physical attractiveness. Young women with ASD may find this problematic due to the close link between perceived attractiveness and social mastery and popularity. Among boys, physical prowess composes an important aspect of self-concept. Again, this presents a challenge for children with ASD because of the common link between ASD and motor coordination problems (see Chapters 2 and 3).
Closely related to self-concept is self-esteem. Many adolescents experience periods of low self-esteem. Parents of children with ASD can expect the same. Sources of low self-esteem among children with ASD usually relate to wanting to be liked and to have friends but not knowing how to succeed.
Morality is another facet of adolescent identity development that is often challenging for children with ASD. Although strong moral convictions can be a notable strength for children with ASD, it can also cause some social difficulties. Superficially clear-cut moral guidelines can lead children to make poor judgments in adolescence, when interactions become more subtle and complex. Like many adolescents, children with ASD may develop strong religious or political beliefs in response to these ambiguities. After reading a book on the meat-packing industry, one young woman with high-functioning ASD decided that eating meat was unhealthy. In addition to simply changing her own diet, she attempted to influence others by pointing out to classmates and the school cafeteria staff all of the health dangers that the nonvegetarian menu items were likely to pose.
Challenges related to the development of identity and self-esteem can present difficulties for children with ASD and their families, but there are several strategies you can use to deal with these issues. As we discussed in Chapter 5 and at the end of Chapter 8, emphasizing your child’s strengths and special characteristics will help him develop positive self-esteem. For example, if your child has a great memory, he can be the “Memory Master.” Calling your child by this nickname when he demonstrates the skill makes clear that he has just done something special and gives him an easily referenced positive way of looking at himself.
Many teens and young adults with ASD don’t realize that their feelings of awkwardness and not fitting in are common and experienced at some point by almost everyone. Few people make it to adulthood without experiencing teasing and rejection. Help your child understand that this experience is par for the course. Sharing some of your own personal experiences during your teenage years can impress on your child that everyone experiences self-doubt as a teen and relieve some of the anxiety about herself that she may be experiencing. Your child may benefit from establishing relationships with others on the autism spectrum. There are now many support groups and Internet communities for individuals with ASD. For example, the Global and Regional Asperger Syndrome Partnership (www.grasp.org) is an active community of self-advocates. For many people on the spectrum, it is confidence-inspiring and empowering to connect with others who have faced similar challenges. There are also published resources that were developed to assist in the exploration of self-identity: I Am Special, by Peter Vermeulen, and Asperger’s … What Does It Mean to Me?, by Catherine Faherty (see the Resources for more information).
Depression and Anxiety
During adolescence (and sometimes earlier), many children who were previously oblivious to or even content with their lack of social connections start to experience distress. In childhood, much of friendship consists solely of acting as “playmates” and engaging in activities, such as sports or video games, together. During adolescence, however, the very nature of friendship changes in several ways that can challenge young people with ASD. Friendships become more sophisticated and complex, with an increasing emphasis on trust, mutual sharing of personal information, and common or admired personality characteristics. These changes in the nature of friendship often increase the social difficulties encountered by adolescents with ASD. These problems are compounded by the burgeoning self-awareness and the ability to make comparisons between the self and others that develop during adolescence. Feeling excluded or irreparably different can and often does lead to depression among adolescents with ASD. Real and perceived disparities with peers can lower an adolescent’s sense of self-worth and promote a descent into depression. Anxiety disorders are also a common psychiatric disturbance experienced by teens and adults with ASD.
Science has not yet clarified whether these mood problems result from the natural psychological consequences of managing ASD or represent a biological disposition that is related to ASD. It may well be a combination of the stress of chronically trying to fit in, the pain of rejection, and a biological vulnerability to mood problems. Some research suggests that mood disorders run in the families of people with ASD. Depression and anxiety disorders in family members usually appear well before the birth of the child with ASD, so they do not appear to be simply a reaction to the stress of raising a special needs child. Another piece of evidence is that the neurotransmitter serotonin (a brain chemical that helps brain cells communicate with each other) appears to be altered in individuals with ASD and individuals with depression. So ASD and depression may co-occur so often for many reasons. Thus, you will need to be attentive to your child’s mood and monitor whether the other interventions suggested in this book can remedy them. If not, you should consult a licensed clinical psychologist or an experienced child psychiatrist. Recent research demonstrates that directive, concrete forms of psychotherapy, such as cognitive-behavioral therapy, are effective at improving symptoms of anxiety in individuals with ASD, as described in Chapter 8. There are also highly effective medications that can help your child through difficult periods.
Seizures
Another problem sometimes encountered during adolescence in individuals with ASD is the onset of seizure disorders. Approximately 25% of all individuals with ASD experience seizures, and adolescence is a time of particular vulnerability. In some cases, seizure activity is obvious, such as when your child loses consciousness and has violent convulsions of the entire body. In other kinds of seizures, however, the signs are less obvious. Your child may have short periods (maybe only a few seconds) in which he is unresponsive (doesn’t respond to his name being called or to other things going on around him). Instead, he or she may stare off into space, blink his or her eyes repeatedly, or show some kind of unusual motor behavior (such as brushing the ground with the toe of the shoe repeatedly). If you suspect your child may be experiencing seizures, he or she should be screened by a neurologist using a clinical electroencephalogram. Most seizure disorders can be effectively treated with medication.
PLANNING FOR INCREASING INDEPENDENCE
It is critically important that you and your child begin preparing for independence well in advance. Transition planning usually focuses on the specific abilities required for functioning as a self-sufficient adult, such as daily living skills (e.g., self-care and domestic responsibilities) and employment or vocation-related skills. Individuals with ASD who have an IEP in school (see Chapter 7) are legally entitled to an Individualized Transition Plan beginning at age 14. This is mandated as part of the Individuals with Disabilities Education Act and the Americans with Disabilities Act, described in Chapter 7. The transition plan begins with an assessment, which can be formal, such as standardized testing to assess abilities and interests, or informal, such as input from family members or caregivers about the student’s abilities. This planning should highlight specific targets for developing self-sufficiency, such as navigating public transportation or doing laundry. In regard to employment, it is important to consider a variety of jobs in terms of desirability, appropriateness, availability, and accessibility. Skill development goals should be planned and should be matched to jobs that are likely to be available. Goals should include both teaching marketable skills and teaching workplace behavior. Job sampling is a means for students to gain work experience. It can help your child by allowing her to practice the new skills she is learning in school in an actual work environment. This will also assist your child by providing a clearer picture of her likes and dislikes and how they are related to particular aspects of the workplace or the job itself. Throughout the process of developing an Individualized Transition Plan it will be important to include a case manager or other support person who will be involved in assisting your child after age 21, when school systems will no longer be involved.
COLLEGE
The benefits of high school, from approval for concentrating on a particular interest to tolerance for—even endorsement of—eccentricity, become even greater in college. There are also, of course, some significant difficulties. During college, many young people are on their own in ways they never have been before. Your less direct supervision over your child’s academic performance may mean that his difficulties will be overlooked. The following are some compensatory strategies that we have found effective. Some of these tips are based on the account of Liane Willey, a college-educated adult with Asperger syndrome and author of the book Pretending to Be Normal. We suggest that you review the options for educational accommodations listed in Chapter 7 as well. Many techniques that helped your child in elementary and high school will continue to be beneficial at the college level.
Disclosing
You and your child will have to consider the pros and cons of disclosing we discussed earlier, but keep in mind that many potential sources of support in the college setting open up when students share their diagnosis with professors, advisers, and tutors. These professionals may have worked with other people with ASD and can be an excellent source of guidance and support in this unfamiliar and often challenging setting. If your child feels uncomfortable disclosing, perhaps she could select one especially trustworthy person to disclose to, such as staff at the center that provides services for students with disabilities (available on all college campuses). This would ensure at least one support person on campus. Mental health professionals or others in the community might be viable alternatives if your child is hesitant to disclose to someone with direct academic connections. You can help decrease your adult child’s discomfort with disclosure by normalizing the phenomenon. Let her know that there are hundreds, perhaps thousands, of other students on campus with disabilities, such as reading and attention problems. Most of these students do disclose their diagnosis to professors and make use of the services on campus for students with disabilities, which are legally mandated. For example, anyone with a recognized disability can usually take exams at the disability center, under quiet and less stressful conditions, and perhaps with extra time allowed. Many colleges now have established resources available to support students with ASD, and access to these services is likely to require disclosure of a student’s diagnostic status. Some colleges have developed specific programs to help young adults with ASD acclimate to the independence and rigors of college life. In these cases, sharing this personal information with a university can make a real difference in your child’s opportunity for success.
Selecting Classes
Especially at first, when your adult child is acclimating to a new environment, advise and guide him to select classes that are well suited to his strengths and to bypass areas of difficulty. When Ralph, a young man with ASD, enrolled in college, one of the first classes he took was a philosophy class. He was a concrete thinker and had a difficult time with the subtle texts assigned. At times it was unclear to him why these questions were important to consider at all. He discussed his problem with his mother and decided to orient his schedule more toward classes that focused on concrete information and memorizing a lot of information. He sold his philosophy books and experienced academic success as a chemistry major.
You may even consider requesting that certain academic requirements that are especially difficult for many people with ASD be waived. For example, foreign language study presents problems for many young adults with high-functioning ASD. Contacting the student disability center on campus is the best way to explore whether any of these requirements can be waived.
As we suggested in Chapter 7, your child may also want to enroll in small classes, where the amount of attention from the professor may be greater, or in less popular courses, where professors may be highly motivated to retain students.
Selecting Teachers
Review student evaluations and consult with other students to identify teachers who are well liked or known for their understanding and flexible personality. Empathic teachers may be more likely to help your child in times of difficulty. Many colleges publish course guides containing teacher ratings or make them available in the advising offices for each major to help make these decisions.
Requesting Accommodations
If there are specific ideas that could make the college experience more comfortable or less intimidating for your child, most colleges will gladly make accommodations to assist your child. Examples of accommodations that might be helpful for individuals with ASD include being excused from group projects, receiving preferential seating to suit any auditory or visual sensitivity, and receiving advance notification for changes in schedule. Visual thinkers might ask professors to provide extra visual aids to help them process lectures and course materials. Students with motor coordination difficulties might request extended time on written exams, oral exams, or the option of using a laptop or a tape recorder for note taking. Many colleges offer note-taking services to individuals with cognitive or physical characteristics that make note taking difficult.
Planning a Class Schedule
In planning a schedule, it’s always better to start with too few classes than too many. For some students with ASD, the transition to college is so challenging that a full course load would be overwhelming. Starting off slowly and building to a full schedule provides time to adjust to the many changes that college life entails. This will also provide your child with more time to complete work and to devote time to establishing social contacts and planning and engaging in social activities. As you help your child plan a schedule, keep in mind your child’s sleeping habits. Try to avoid classes scheduled for an hour of the day when she is typically asleep or groggy. Keep a visual schedule posted in your child’s room so she has a handy visual reminder of the times and locations of each class. Unlike high school, during college students are likely to have blocks of free time during the day. For individuals with ASD who thrive on structure and routine, it is important to block these times out on the calendar and specify a designated purpose, such as study time, leisure time, or physical exercise. This added structure and predictability can make college life more comfortable for many people with ASD and can reduce anxiety associated with transitions and changes in schedules.
Monitoring Deadlines
Keep a portable academic calendar with plenty of writing space to mark down homework due dates as well as dates related to registration and class drop deadlines. Encourage your child to check this calendar each morning to have a clear idea of the schedule for the day as well as any upcoming deadlines. Share important deadlines with your child’s support people so that they can help him remember. Automated reminders on electronic calendars or mobile devices can also help your child keep track of deadlines and schedules.
Promoting Study Skills
Consistency is crucial to good study habits. Again, planning specific blocks of study time and writing them into a schedule helps students remember to study and gives them a finite goal. These study sessions should be planned for a time of day when your child feels productive and alert. She should find a “study spot” in a library, student center, or computer lab that reliably offers peace and quiet. Students should experiment with different environments to find the type that best suits their own style. For example, some students might feel more comfortable in a dimly lit space with materials scattered around them, while others might prefer a bright, highly organized study spot. Within study sessions, your child might prefer to devote the entire time to one subject or to study several different subjects. If your child prefers the latter approach, it can be helpful to structure her time so that favorite subjects are studied last. This helps motivate your child to persevere through other topics and ensures that more challenging subjects will be addressed while energy is high and attention is most focused. Campus study centers or books on study skills can help out by providing study tips that are applicable to all students, including those with ASD. Most colleges, in their center for students with disabilities, offer some sort of assistance to help students in the domain of organizational skills.
Promoting Social Opportunities
College will provide your adult child with numerous opportunities to further develop his social skills. There are many settings in college where social skills are taught at a more academic level. For example, classes in speech communication and drama emphasize how best to communicate, how to convey emotion, and how to read other people’s response to you. Sociology and psychology classes can provide insight into the way others work and the “rules” underlying human behavior. An abundance of special interest groups, ranging from rock group fan clubs to star-gazing societies, provide opportunities for socialization within the comfort of an area of interest. Responding to the increasing presence of students with ASD on college campuses, the administrative offices or student bodies of many colleges are developing ASD friendship or support groups.
LIVING ARRANGEMENTS
Some families prefer to have their adult child with ASD continue to live with them. Others, for various reasons, want their adult child to live in the community, in which case several different options are available. Some adults with high-functioning ASD are quite nervous about and uncomfortable with this idea, but many others want this opportunity. Many young adults see it as a way to “normalize” their experience by reaching the same milestone as their siblings and peers. A wealth of practical matters, such as housework, household maintenance, cooking, shopping, transportation, and bill paying, can make independent living difficult for individuals with ASD, however. Your adult child’s ability to accomplish these kinds of tasks on her own, with minimal supervision, needs to be considered when selecting the most appropriate living situation. If you’re concerned about your child’s ability to live independently, start at a more supported level; preparing your child for increased independence can make the transition less overwhelming. Remember, too, that none of these decisions is permanent.
Most outside-the-family-home living arrangements are accessed through state agencies (with the exception of the first one we discuss below, independent living). The first step in finding these living arrangements is determining your child’s eligibility for these state services. The name of the agency that provides residential services differs from state to state, but it is usually the same agency that provides respite, vocational-rehabilitation, and other services to people with disabilities. They often have names like the “Division of Developmental Disabilities” or the “Department of Developmental Services.” Many states now have specific divisions focused on provision of services for individuals with ASD. The doctor who diagnosed your child, your state autism society, or even a local pediatrician or psychologist may be helpful in determining the correct contact. This agency should have a designated webpage linked from your state government website. When you and your child begin the evaluation process that determines eligibility for services, be sure to emphasize the limitations your child has in accomplishing activities of daily life independently. Sometimes people with ASD are denied state-funded disability services because their level of handicap is perceived as minimal compared to those with severe ASD or mental retardation. But if you stress that your child cannot do necessary activities like feeding himself (since this requires shopping, money handling, and other skills he may not have) or engage in daily hygiene unless someone assists him, he will be more likely to be eligible for the residential assistance options we describe below.
Independent Living
Independent living refers to your adult child living on her own without professional or significant family support. Independent living might, however, include a roommate who could be a source of support. For adults with ASD who are living independently, support people are especially crucial. Your child should have “go-to” people who live nearby and can be contacted for various kinds of support. People with ASD who are able to live independently may still need professional help in areas that involve crucial decision making, such as selecting homeowner’s or renter’s insurance or life insurance, or in financial matters. Based on her firsthand experience living as an adult with ASD, Liane Willey suggests some organizational strategies to help people with ASD who are living independently. She also recommends that a support person help your adult child get these strategies up and running.
• Sort mail into color-coded bins according to type, such as magazines, bills, correspondence, and so on. Set a specific time on a certain day of the week to go through the bills bin and pay those that are due. This kind of structure and routine helps to ensure that bills will not be overlooked and deadlines will not be missed. You can work with your child to set up electronic auto-pay arrangement for bills so that it is not necessary to take action each month. Although this reduces independence, you could also pay his bills yourself by accessing his electronic accounts.
• Maintain color-coded paper or computer files for documenting and storing information involving credit cards, automobile maintenance and insurance, checkbooks, family wills and related legal documents, financial records, home or life insurance, household appliance instructions and warranty information, and health records. Software programs, such as Evernote, enable a person to simply photograph important documents (for example, with a mobile phone camera) to have the text recognized and placed in an easily searchable database. Such programs use ease of search to reduce the need for consistent organization, which may be beneficial to individuals who struggle with executive function.
• Use an electronic calendar to record all household responsibilities or related appointments on a weekly or monthly schedule. By using Internet “cloud” support, this information can then be present and modifiable on the devices of multiple people, such as both you and your child. It may also be helpful to print monthly or weekly calendars and put them in a prominent place around your house. Although a portable calendar is convenient because it can travel with your child, it may lack the visual salience of a large calendar and is unlikely to be useful unless your child regularly accesses it.
• For important one-time reminders, stick adhesive-backed notes on the bathroom mirror so they will be impossible to miss during the course of the day or when getting ready in the morning. Again, alarms on mobile devices can be used as reminders.
• Location-based reminders on mobile devices can also be helpful. For example, your child might set her phone to remind her to take her laptop case when she leaves the house in the morning.
Tools for Growing Independence
•“Go-to” people in different settings: school, work, sports, clubs, social arenas.
•Disclosure cards or a rehearsed script.
•Explicit rules for romantic and sexual behavior.
•Visual calendars and automated or location-based reminders on mobile devices.
•Exploration of autism, self-identity, and self-acceptance through books, support groups, and online communities.
•Medication or cognitive-behavioral therapy for mood and anxiety problems.
•Educational accommodations in college.
•Organization systems for paperwork or use of database software that can scan images and recognize text.
•Online grocery ordering and delivery services.
•Individualized transition plan to college or workplace.
•Online job procurement and employment opportunities.
•Job coaches.
•Residential living options through state agencies that determine eligibility.
For many people with ASD, overwhelming sensory stimulation and crowds of people can make shopping extremely difficult. Thanks to catalogs and web shopping, your child may not have to leave home to obtain many items, including groceries. When your child does have to run errands or go shopping, ask a support person to go along. Or an adult child who finds certain errands less intimidating or enjoyable can offer to do those for a support person in exchange for the support person’s taking over more challenging tasks for the person with ASD.
Supervised Group Living
Another residential option that provides more support than independent living is supervised group living. One type of supervised group living is a group home, which is a residential facility for several individuals with disabilities. Group homes are usually houses in residential neighborhoods staffed by trained professionals who assist residents in areas like personal care, cooking, and housekeeping. Since group homes may serve individuals with various disabilities, it may be advantageous to seek one that specializes in ASD.
A second type of supervised group living is a supervised apartment. In a supervised apartment, an individual lives with fewer people, and professionals visit only a couple of times per week. This arrangement affords the residents more independence and greater responsibility and is therefore often an excellent means of preparation for independent living.
Skill Development Homes
In skill development homes residents live with a family in their dwelling and the family receives funding from the agency responsible for the individual’s care. In this arrangement, the family members have been trained to work with people with ASD and can be expected to provide assistance and instruction in self-care skills and housekeeping.
EMPLOYMENT
Finding appropriate employment is crucial in many straightforward practical ways, but it is also an important means of boosting a person’s self-esteem and providing social opportunities. You will want to begin planning for your child’s eventual employment well before your child will actually approach the job market, probably as he enters adolescence. This provides time to prepare your child for the challenges of the workplace and to help him develop requisite marketable skills. For many individuals with ASD, preparation for employment will be a part of the Individualized Transition Plan described above.
Employment Options
There are several different types of employment settings, discussed here in descending order of amount of independence and self-sufficiency required.
Competitive Employment
Competitive employment refers to the typical type of job that most people apply and compete for. Such jobs do not usually offer support for your adult child as part of the work environment, so they represent the most independent option of those we’ve listed. Some people with ASD succeed in competitive employment, especially when they opt for jobs that play to their strengths (see below) or minimize the amount of interpersonal contact required. Also within the domain of competitive employment is self-employment, or running your own business. Although this can mean increased organizational demands, it also allows your adult child to make the rules and set things up to suit his or her own preferences or needs. It can also offer an opportunity to tailor employment to the person’s own interests. Some people with ASD have chosen the option of running a business over the Internet since it may reduce direct interpersonal contact and social demands. One young man we know ran a website that brokered the sale of used books.
Supported Employment
“Supported employment” refers to a system of supports that allow individuals with disabilities to obtain paid employment in the community. Supported employment includes individual placement, clustered or enclave models, mobile crews, and the entrepreneurial model. “Individual placement” refers to a model in which a specific job is developed for a specific person by a job coach. This professional also works with the individual on the job to help her develop the necessary skills to do the job well. The “cluster,” or “enclave placement,” model is similar, but the job coach works with a group of people at the employment site. Mobile crews also consist of a small group of individuals and one job coach, but they work at different job sites and for different employers (for example, cleaning homes or offices in the community). In the entrepreneurial model, a small business is developed to employ persons with disabilities. At Division TEACCH, the center for individuals with ASD in North Carolina (described in Chapter 4), they have developed several businesses that are staffed by people with ASD, including one that makes the materials needed for a test kit used by professionals to measure symptoms of ASD.
Secure Employment
“Secure employment” refers to a facility-based employment placement in which an individual is guaranteed a job, usually doing basic tasks in a structured setting. In a secure employment setting, individuals also receive work skills and behavior training to prepare them for more independent and competitive work environments.
Sheltered Workshops
Like secure employment, sheltered workshops are employment services associated with training agencies that employ many individuals with disabilities. However, placement in a sheltered workshop setting may not provide sufficient training for individuals to progress toward more independent employment settings. For this reason, secure employment settings are generally preferable to sheltered workshops.
Choosing a Job
An appropriate job should capitalize on the strengths of your son or daughter in terms of both preferences and natural abilities. We have discussed the passion and conviction with which many people with ASD pursue their interests and the knowledge that they can accumulate about their preferred subject matter. Applying this enthusiasm and ability in the workplace is an ideal means of helping people with ASD to succeed in employment. For example, a person who is fascinated by bus routes and schedules would be a natural candidate for a job with a transportation department. As we described in Chapter 5, a person interested in history might enjoy working in an archives department. Of course, there is more to successful employment than simply being interested in the job responsibilities. However, a passion for the subject matter addressed in the job can provide excellent motivation for confronting the challenges it presents.
Consider jobs that involve a high level of routine and order. “Rule-governed” people may be more likely to succeed in jobs that have clearly defined rules, procedures, or routines, such as in a payroll office, a library, or a business that performs data entry. Jobs that require less direct interaction with others or that can be done through telecommuting or consist of primarily computer-oriented responsibilities may be appropriate for individuals who feel uncomfortable in interpersonal interactions.
Rupert, an adult with high-functioning ASD, worked in a small office building and delivered the mail to the individuals who worked there. He liked routine and was aware that he was able to perform better and more comfortably when things were as he expected them to be. With his supervisor, he set up a daily schedule and mail route. Sticking to this schedule and having an available “consultant” should things change helped Rupert to succeed in the workplace.
Look for job opportunities that capitalize on your child’s strong visualization or memory skills. A great example of tailoring a job to a strength in visual thinking is Temple Grandin’s remarkable ability to use her visual mind to construct and test cow-handling facilities. Employment opportunities that feature tangible tasks, such as cooking, organizing, or computer programming, seem naturally suited to people who tend to think in visual terms. Jobs that require knowledge of lots of specific details or facts, such as working with inventory or in a library, can be a good match for adults with ASD who have a strong rote memory.
A useful place to begin is to compose a list of your child’s likes and preferences. Think creatively. For example, an interest in crafts might be turned into a website where decorative items are sold. An interest in baseball could translate into trading and selling baseball memorabilia. It is important to consider such things as level of interpersonal contact, physical requirements, sensory stimulation and level of activity in the workplace, and the flexibility of the work schedule. Think about whether your child would enjoy or be able to tolerate these aspects of the work setting. Appropriate jobs might include engineer, computer programmer, florist, medical transcriber, artist/craftsman, musician, factory worker, architect, electronic repairperson, librarian, antiques/collectibles trader, and archivist. This is not by any means an exhaustive list. It is intended to provide a range of options, from those requiring advanced degrees to those that can be obtained fresh from high school, that all require good visual skills, involve high degrees of routine and order, and are more hands-on than abstract in nature.
There are also computerized resources to assist with job procurement. The Attainment Company (www.attainmentcompany.com) markets software for this purpose. At their website, you can peruse software that is designed to help you work through your child’s characteristics and how they match up with job requirements and social skills associated with employment. Many advocacy groups, such as Autism Speaks, offer webpages with specific information on employment and transition strategies as well as actual supported job opportunities.
Especially for a first job, it is essential to pick one with a high probability of success. This will help your adult child adapt to the experience of working while reducing his worry about failure. It will also give your child a chance to experience firsthand the reinforcing properties of succeeding in the workplace and earning a salary.
Interviewing
Interviewing is a crucial skill for all job applicants, so it’s important to work specifically on this skill with your adult child. Make a specific and concrete list of inappropriate and appropriate behaviors. If you know of any inappropriate habits your child has, such as clearing her throat loudly or picking at scabs, include them on the list. Write out a script that includes likely questions that the interviewer will ask and appropriate responses. Practice this script with your child using role playing to help your child memorize answers and to increase his or her comfort in this type of situation. Be sure to pay attention to aspects of nonverbal communication in both the interviewer and your child. Important aspects of nonverbal behavior to include are greetings and good-byes, eye contact, voice volume and pace, display of emotion or anxiety, dressing appropriately, appearing well groomed, and proper posture. Emphasize to your child how important it will be to attend to everything the interviewer says during the interview. For more information about the types of behaviors that are helpful during interviews, consult a book addressing work application and interviewing particulars.
Once your child has practiced these skills and feels comfortable role-playing them with a support person, it can be helpful to do a “throw-away” interview. Apply for a job that will involve interviewing but is undesirable or in a less preferred field. Scheduling an interview with less riding on the line will give your child the opportunity to practice interviewing skills in a real setting. Doing so can reduce her anxiety and the feeling of total unfamiliarity when your child later interviews for a job she genuinely desires.
Workplace Accommodations
Before you can ask for accommodations in the workplace, your child must decide whether to disclose information about his diagnosis. Accommodations can be made in a number of areas. Adjustments in workspace may help with sensory or motor characteristics. Use visual approaches to teach job skills. Creating visual “supports” for the workplace, such as a written set of instructions or picture diagrams of the finished product, can be beneficial to visual thinkers. It may also be important to ask for special considerations if work requirements entail cooperating in groups. Scheduling accommodations could help increase routine or decrease unpredictability in work demands. Finally, it may be important to work out a plan with an employer for management and resolution of any crises that may develop on the job.
Our goal in this book has been to help you give your child the best chance possible for a full and happy life. As your understanding of the strengths associated with ASD grows, so will your ability to conquer its challenges. And as you overcome the difficulties that your child’s disorder presents, you will be more able to celebrate the gifts and joys that your unique son or daughter brings to your life. The challenges may never entirely go away, but with your understanding and proper treatment as early as possible, your child and family can expect lots of improvement over the years. The more we learn about high-functioning ASD, the more likely it is that your child will, in fact, lead a full and happy life.