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Typically, Autism Spectrum Disorders high school graduates are unprepared for the transition to independence. Early, ongoing training in the social skills crucial to establishing successful adult relationships in college, vocational school, residential living, or on the job can help. He also guides readers through the legal, financial, educational, vocational, and community resources available after graduation. The essence of the book lies in the 73 Skill Lessons targeting: nonverbal communication, empathy, anger/anxiety management, conversational skills, and employment-related skills which can be taught by parents, teachers, or professionals. This easy-to-follow resource offers a complete toolbox of social skills and the means to attain them. Helpful chapters include: Asperger’s syndrome, autism disorders, and the need for life skills training. The transition process and the law College, Career and Residential Options Beyond High School: What parents can do to prepare their son or daughter (by Rick Blumberg, Assessment of social skill needs Skill instruction strategies: Individual, small group, self-instruction. Training peers to be more accepting of students on the spectrum Skill Lessons

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Veröffentlichungsjahr: 2012

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Preparing for Life

The Complete Guidefor Transitioning to Adulthoodfor those with Autism andAsperger’s Syndrome

Dr. Jed Baker

Preparing for Life

The Complete Guide for Transitioning to Adulthood for those with Autism and Asperger’s Syndrome

All marketing and publishing rights guaranteed to and reserved by

721 W. Abram Street

Arlington, Texas 76013

800-489-0727

817-277-0727

817-277-2270 (fax)

E-mail: [email protected]

www.FHautism.com

© Copyright 2005, Dr. Jed Baker

All rights reserved.

Printed in USA.

No part of this book may be reproduced in any manner whatsoever without written permission of Future Horizons, Inc. except in the case of brief quotations embodied in reviews.

Cover design and book layout: Matt Mitchell, www.mattmitchelldesign.com

ISBN 978-1-941765-19-7

Acknowledgments

I wish to thank all the students, their families, teachers, and employers who have taught me what skills are important to teach in preparation for adult life. Their needs and goals guided the content of this book.

I also want to thank my colleagues who made crucial contributions to the work. Rick Blumberg, Ph.D., wrote Chapter 4, which in many ways is the centerpiece of the book. Daphne Gregory, M.A. was inspirational in detailing her transition model and expressing her constant enthusiasm for preparing her students for adulthood. Kenwin Nancoo, LPC, NCC, CNLP, M.S. made significant contributions to the dating sections as only an eligible bachelor can do. Ilana Levitt, M.A., M.Ed., LPC, offered extremely helpful suggestions to me regarding the employment section.

At some point, it felt like Preparing for Life might take a lifetime to complete as several parts were rewritten to make it a better work. I wish to thank Kelly Gilpin for her endless patience in editing and reediting through this process.

Last but not least, thank you to my wife Beth and our children, Jake and Lindsay, for continually trying to prepare me for adulthood and putting up with me as I squeeze every extra hour into writing skill lessons.

—Jed Baker, Ph.D.

Table of Contents

Chapter One:Asperger’s Syndrome, autism spectrum disorders, and the need for life skills trainingChapter Two:The transition process and the lawChapter Three:Self-awareness and moving beyond denialChapter Four:College, Career and Residential Options Beyond High School: What parents can do to prepare their son or daughter (by Rick Blumberg, Ph.D.)Chapter Five:Assessment of social skill needsChapter Six:Skill instruction strategies: Individual, small group, self-instructionChapter Seven:Generalization of skillsChapter Eight:Training peers to be more accepting of students on the spectrumChapter Nine:

Skill lessons

Nonverbal cues/body language

1. Expressing and reading welcoming versus unwelcoming social cues.

2. Interest versus boredom social cues

3. Sarcasm versus genuine expressions

4. Attending to others

5. Respecting personal space and belongings

6. Personal hygiene

7. Dealing with odd motor mannerisms

Dealing with anger/frustration

8. Overview of dealing with anger

9. Identifying triggers to your anger

10. Altering or avoiding the triggers to your anger

11. Better ways to think about and deal with the triggers to your anger

12. Calming yourself when angry

13. Talking versus acting out your feelings

14. Putting it all together: Using the Daily Anger Record

Dealing with anxiety

15. Dealing with anxiety and fear—Understanding the alarm reaction

16. Dealing with unpleasant, intrusive thoughts and compulsive behaviors

17. Dealing with social fears

18. Dealing with new feared situations

Conversation

19. Sayings hello’s and goodbye’s

20. Introductions

21. Politely interrupting

22. Maintaining and joining a conversation

23. Starting conversations with people you know

24. Getting to know someone new

25. POSTER: Summary of Starting and Maintaining Conversations

26. Conversation repair strategies

27. Politely changing topics

28. Being sensitive to the listener’s interests

29. Politely ending conversations

30. Answering the telephone and taking messages

31. Calling friends on the telephone

Building and maintaining friendships (and dealing with roommates)

32. Where to find friends

33. Don’t try too hard too soon

34. Sharing friends

35. Avoiding touchy subjects and insults

36. Complimenting

37. Respecting others’ views

38. Don’t impose rules on others (minding your own business)

39. Avoid bragging

40. Dealing with peer pressure and avoiding setups

41. Empathic listening

42. Showing caring for others’ feelings through supportive statements

43. Deepening relationships—sharing personal information

44. Conflict resolution/Assertiveness

45. Dealing with teasing

46. Showing good sportsmanship

47. Getting attention in positive ways

Dating

48. Where to find a date and how and when to ask someone on a date

49. Asking someone out on a date

50. Reading the signals—when to pursue a romantic relationship

51. Sexual harassment

52. Do’s and Don’ts on a date

53. Communicating clearly to meet each other’s needs

Dealing with school and family demands

54. Asking for reasonable modifications

55. Dealing with frustrating work

56. Accepting no or waiting for what you want

57. Asking nicely for what you want

58. Working cooperatively in groups

59. Dealing with mistakes and correction

60. How to respectfully disagree with teachers, parents, or supervisors

61. Dealing with stressful living situations

Employment skills

62. Choosing job/career directions

63. Conducting a job search

64. Writing a resume and cover letters

65. Scripts for networking with friends, relatives, and potential employers

66. Interview skills (and whether to disclose a disability)

67. Handling rejection

68. Do’s and Don’ts to maintain a job

69. Responding to criticisms, accusations or complaints on the job

70. Exiting a job

Money Matters

71. Managing money

Preparing for Emergencies

72. Dealing with emergencies and emergency workers (such as police or hospital workers)

Transportation

73. Negotiating transportation

Chapter One

Asperger’s, Autism Spectrum Disorders and the need for life skills training

I recently was asked to create a life skills training curriculum for two teens in a special high school program for students with Asperger’s Syndrome (AS). Although many students with AS remain in mainstream high school settings, these very bright young men had long histories of behavioral and academic difficulties in their previous school settings that led them to this specialized program. I was told they needed help with their social skills, but might not be open to receiving such help. After years of social rejection, they wanted to be accepted for who they were rather than to be told they need to change. How then could I motivate them to want to learn new social behaviors without suggesting that there was something problematic about their current social functioning?

I thought it might be interesting to have them participate in teaching others about social skills rather than convincing them that they needed to learn new skills. I arranged for them to be paid for their participation in the making of a new social skill picture book that demonstrated the “right” and “wrong” ways to enact a variety of skills. Although we selected skills that I knew they needed to work on, I presented the activity as a project primarily to help others. One student took to the activity with some enthusiasm. He posed for pictures, sequenced pictures together on the computer and added text to create a story.

The other student was more reluctant to participate. I decided to show him an example of a picture skill so he could get a better idea of the project. I showed him the skill for greeting people “appropriately” since he typically greeted others with the phrase “death to all.” His reaction was honest and thought provoking, “I will not participate. Your depictions of ‘right’ and ‘wrong’ are typical psychological propaganda.” I had to admire his insight and wit. He was right. Who was I to tell others how to behave in a socially appropriate manner? As my wife will attest, I am certainly not the model of social grace and style.

This young man reminds us that there is no one person who can dictate what is appropriate social behavior. However, there are certainly behaviors that, depending on the situation, will facilitate or get in the way of reaching individuals’ goals. This young man has entertained the notion of getting a graphic design degree at some point. Saying “death to all” to greet a college admissions officer might not be a very practical approach to reaching his goal. In contrast, saying, “death to all” to those who know and accept his sarcastic wit might even help maintain friendships by bringing humor to his interactions.

It is my philosophy that the skills in this book and others do not represent a model of social correctness. They are, however, ideas about how to behave that may help students reach their own goals. People with Asperger’s need acceptance, not judgments that how they behave is “incorrect.” The skill lessons in this book can be thought of as ways to expand social repertoires to reach personal goals rather than change “faulty” behaviors. The message is, don’t alter the uniqueness that makes you special in so many great ways—just add to what you can do.

Asperger’s Syndrome and Autism Spectrum Disorders

Autism spectrum disorders (also know as pervasive developmental disorders) refer to a wide range of symptoms that span across an individual’s sensory, cognitive, motor, language, and social-emotional development. Asperger’s Syndrome, autism, and Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) are some of the most common autism spectrum disorders.

The autism spectrum is considered a “spectrum” because individuals vary greatly from each other. Intellectually, some fall in the mentally retarded range while others clearly fall in the superior intellectual range. Asperger’s Syndrome and High Functioning Autism involve, by definition, individuals with average to above-average intellectual ability and better communication skills than those with more “classic” autism who tend to have lower intellectual functioning and more communication difficulties. Those who have symptoms of an autism spectrum disorder, but do not meet the full criteria for a specific diagnosis like autism or Asperger’s Syndrome are typically given the diagnosis of Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). This actually represents the largest category of individuals on the spectrum, which means that although we can identify individuals on the spectrum, we are not that good at making specific differential diagnoses among autistic spectrum disorders.

Current diagnostic criteria describe autism spectrum disorders as involving difficulties in three general areas: (a) qualitative impairment in social interactions (e.g., impairment in responding to or initiating interactions with others, or failure to form peer relationships), (b) qualitative impairment in verbal and nonverbal communication (e.g., no mode of communication, or impairment in the ability to initiate or sustain conversations), and (c) restricted, repetitive, and stereotyped patterns of behavior, interests or activities (e.g., preoccupation with restricted patterns of interest, or inflexible adherence to nonfunctional routines or rituals) (American Psychiatric Association, 1994).

Problems with social interaction can include difficulties initiating or responding to conversation, difficulties using or responding to nonverbal gestures (e.g., pointing out objects), lack of or inconsistent eye contact, impairments in responding to others’ feelings, difficulties working cooperatively with peers, and subsequent failure to develop peer relationships. Understanding what to do or say in social situations is a core concern for autistic individuals.

Communication problems range from no ability to communicate and use language to more subtle difficulties with the flow of conversation and social communication (pragmatic language). Some classically autistic individuals may have difficulties understanding the meanings of most words and may show little spontaneous language communication. In contrast, those with High Functioning Autism and Asperger’s may appear to have excellent command of language in terms of their ability to express themselves and understand others, yet they may have great trouble with the flow of social conversation, talking at people instead of with people, relaying factual information or phrases memorized from TV shows without responding to what their listener is saying or doing. Thus individuals with Asperger’s may have extensive vocabularies, but difficulty using them in a fluid way to make conversation in social situations.

Repetitive and ritualistic behaviors reflect a preference for sameness and repetition with regards to interests, daily routine, and body movements. Many youngsters with autism develop a fascination with a particular area of interest and elaborate on that interest to the exclusion of learning about new things. For example, I knew a youngster who became obsessed with vacuum cleaners and was reluctant to attend to or talk about anything else. Many autistic individuals also exhibit non-functional routines that appear superstitious in nature. One individual I worked with had to hang every picture in the house at a crooked angle before he could use the toilet. Other students may not have non-functional routines, but prefer that their daily routines occur the same way all the time and may become very anxious or upset when changes or transitions are introduced. Youngsters may also demonstrate repetition in their use of language (repeating the same phrase over and over) or in their physical movements (e.g., repetitive hand flapping, body rocking, or twirling around and around).

Because of the difficulties individuals with ASD have in negotiating social situations and handling changes in their environment, many students experience stress, frustration and anxiety on an almost constant basis (Kim, Szatmari, Bryson, Streiner, & Wilson, 2000; Myles & Southwick, 1999). Wanting to interact with another student but not knowing how, not understanding the change in teacher directions for a new challenging task, hearing other students laugh around them and not knowing whether they are the target of the joke—these are all stressful situations that youths with AS experience daily.

Despite this level of stress, it is important to point out the emotional variability among students with autism spectrum disorders. Some students rarely seem to get upset, as they may handle their stress by withdrawal and go virtually unnoticed. Others present additional anxiety disorders (e.g., Obsessive-Compulsive Disorder, Social Phobia, or Panic Disorder). Some students seem to be constantly frustrated, impulsive, and have frequent tantrums. Many of these individuals may also get diagnosed with Attention Deficit Disorder or a Mood disorder (e.g., Bipolar disorder). Although students may react to and cope with the stresses in their lives quite differently, they may share a similar reason for experiencing high levels of stress, as described below.

Given the variety of symptoms and intellectual functioning among individuals with autistic spectrum disorders, a number of researchers have theorized about the core underlying problem within the disorders. Three, perhaps related, theories have received the most attention:

1. Frith (1989) suggests that autistic individuals lack the ability to simultaneously integrate multiple linguistic, social and emotional messages typically present in social situations. Something about their neurological functioning makes it difficult to assimilate and organize all the pertinent information. Since most social situations have multiple levels of sensory input, autistic individuals do not always fully grasp what is happening or how to respond. Instead, they may attend to and process only a fragment of the social experience, resulting in repetitive and atypical social behavior.

2. Baron-Cohen (1995) suggests that the core problem is the inability to understand the thoughts and feelings of others, a process termed “theory of mind.” Thus, autistic individuals have difficulty taking other people’s perspectives.

3. Hobson (1996) suggests that autism involves the inability to perceive and understand emotional expressions. This would then lead to difficulties in perspective taking and subsequent problems in social interaction.

These three theories can be considered complementary. Both Baron-Cohen and Hobson’s theories suggest that autistic individuals cannot easily empathize with or understand another person’s view of the world. Frith’s theory helps explain why. The inability to simultaneously integrate information about what is happening in a social situation makes it difficult to imagine what others might be thinking and feeling. To take another’s perspective, one has to synthesize information about the other person (e.g., the person’s recent past experiences and preferences), along with what is happening to the person.

Most social skills rely on the ability to mentally adopt another person’s perspective. For example, knowing why to say hello when you greet someone is based on understanding how others might think or feel if you ignore them rather than greet them. Knowing when to stop talking, take turns, respond to others’ initiations, compromise, help others, or share, all come naturally when a person can easily take another’s perspective. However, these social skills do not come naturally to autistic individuals, and must be taught explicitly if they are going to be mastered. The Social Skills Lessons laid out in Chapter 9 attempt to do just that—to break down social skills into their components and make explicit what to do and say in social situations and why.

What Life Skill Lessons are Relevant for Students on the Spectrum

As described above, individuals on the spectrum may have difficulties with: (a) perspective taking and empathy, (b) the use of nonverbal communication, (c) conversation skills, and (d) handling frustrations and anxiety. The skill lessons in Chapter 9 try to address these issues across a variety of situations (e.g., with peers, parents, educators, and employers). The life lessons outlined are primarily social skill lessons as they impact on how individuals will interact with others.

Perspective-taking and empathy: All the skill lessons in Chapter 9 address the issue of perspective taking in that every lesson gives some information about the impact of one’s behavior on others. Each lesson begins with a “rationale” that includes a description of how the particular skill influences others’ perception of the student. For example, a skill like “Don’t impose rules on others” involves information about how others will feel and react if a student tells them what to do too much. In addition to the perspective-taking that pervades every skill lesson, the issue of showing empathy for others when they are upset is specifically addressed in lessons on empathic listening and showing understanding for others’ feelings.

Nonverbal communication: Since many social skills rely on the accurate understanding and expression of nonverbal behaviors, some crucial nonverbal skills are outlined in the beginning of Chapter 9. Unlike many authors writing on this subject, I do not necessarily think it is relevant (or even possible) to teach how to accurately read all emotions and nonverbal communications. Instead, I have tried to present information on those nonverbal cues that are relevant to most social interactions. A crucial nonverbal issue that cuts across many skills is the ability to read and express interest (versus disinterest), a welcoming attitude (versus unwelcoming behaviors) and sincere emotional expression (versus sarcasm). These distinctions help students know when to continue to pursue a social interaction and how to express a desire for others to continue to interact with them. If someone looks bored, unwelcoming, or teases sarcastically, then this may be time to back off, while others’ interest, welcoming attitude and genuine positive expressions are reasons to continue to interact. For those readers interested in more information about identifying various emotional expressions, they may find the Mind Reading software developed by Simon Baron-Cohen (Baron-Cohen, 2002) and colleagues to be helpful.

Conversation Skills: A large proportion of lessons is devoted to the conversation area as these skills are crucial for most social interactions. Working cooperatively with others in school and employment settings, making friends, meeting, and developing intimate relationships all rely heavily on effective conversation. Skills here focus on the ability to initiate, respond to, and manage the flow of conversation with sensitivity to one’s partner.

Anger/Frustration and anxiety:Chapter 9 has two sections of skill lessons devoted to managing one’s own emotions; one for managing anger/frustration and the other for managing anxiety. Intense frustration or anxiety can make a student unavailable for learning. Thus for those whose anxieties or frustrations interfere significantly with functioning, these skill areas often have to be targeted first.

Chapter Two

The transition process and the law

Research over the past 25 years has shown that many young adults with disabilities who graduated from high school remain unemployed, socially isolated, or in trouble with the criminal justice system (Mcafee & Mann, 1982; Patton & Dunn, 1998; Wagner, Balckorby, Cameto, Hebbeler, & Newman, 1993). As a result, many special education advocates pushed for changes in the law to assure better planning for the transition from high school to adult life. The Individuals with Disabilities Education Act (IDEA) (P.L. 10 1-476) and the 1997 Amendments (P.L. 105-17) mandate secondary schools to create transition plans for each student with a disability to help them successfully move on to post-school activities like college, vocational training, employment, independent living and participation in the community. The IDEA 1997 Transition Regulations defines transition services as:

“a coordinated set of activities for a student with a disability that

1. Is designed within an outcome-oriented process that promotes movement from school to post-school activities including postsecondary education, vocational training, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation;

2. Is based on the individual student’s needs, taking into account the student’s preferences and interests; and

3. Includes:

I. Instruction

II. Related Services

III. Community experiences

IV. The development of employment and other post-school adult living objectives

V. If appropriate, acquisition of daily living skills and functional vocational evaluation.”

The law requires schools to develop, and update annually, a student’s transition plan by age fourteen focusing on the student’s course of study (e.g., advanced placement courses or vocational education program) and by age sixteen to establish a transition plan detailing any interagency responsibilities or needed linkages (e.g., links to the department of vocational rehabilitation or to employer sponsored internship or paid work programs).

The transition plan is based on an evaluation of the student’s needs, as well as the student’s preferences and interests. Thus it is crucial that the student, the student’s family, and the school have a clear understanding of the student’s strengths (and possible interests) and challenges (and related compensatory strategies or plans to remedy those areas). The assessment section of this book describes a form (Appendix A in the back of Chapter 3) to summarize the results of educational, vocational, and psychological evaluations and help map out assets and challenges. This form is not a substitute for these evaluations, but rather a convenient form to summarize the results of such evaluations.

Daphne Gregory, founder and president of the New Jersey Transition Coordinators Network, has developed a model program for transition services at Millburn High School in New Jersey. Her program has set the standards that lawmakers have used to create many of the laws governing how transition services should be provided. Her model takes students through several stages as they participate in transition group meetings that meet every month:

Stage 1: Self-awareness. In 9th grade, students begin to assess their assets and challenges. They develop information about their disability, needed modifications or training, and talents and interests.

Stage 2: Self-advocacy. Based on their self-awareness, students learn to advocate for themselves. They learn to express their interests and preferences, to develop their own goals, participate in their IEP and eventually run their IEP meetings, and educate others about their disability.

Stage 3: Career awareness. By their Junior year, students begin career assessments to determine their career interests, and match their strengths and weakness to career goals. A crucial component of this is the development of appropriate internship experiences to try out different employment/career options. This allows for what the law above describes as a “functional vocational assessment,” which is an ongoing assessment of the skills needed to perform while in a particular work environment. By actually working in a real work environment, it is possible to assess what skills the student still needs to learn and to have real opportunities to generalize those new skills in the actual work setting. To this end, frequent feedback from employers and supervisors is crucial to inform further targets for skill development. For more information on Daphne Gregory’s program, see Hunsberger (2001).

Social skills training is a crucial component of every aspect of Transition Services. To advocate for oneself in an IEP meeting or later in college, to gain and maintain employment, and to negotiate the community and live independently all require successful social interactions. Consistent with Daphne Gregory’s model, we begin the process of social skills training with self-awareness. Self-awareness is a crucial part of what drives the motivation to learn social skills as described in the next chapter.

Chapter Three

Self-awareness and moving beyond denial

Self-awareness

Before one can learn social skills, or any skills for that matter, it is crucial that the learner is motivated. Motivation may come from an individual’s insight into his or her own pattern of assets and challenges. From such insight, one may desire to alter behavior and learn more skills in order to achieve desired social or vocational goals. For example, an individual who knows he has a fine motor problem affecting his handwriting may desire to learn keyboarding skills if he wants to get an office related job. Similarly, an individual who is aware of her difficulties starting and maintaining conversations with others and desperately wants to make friends may desire to learn conversational skills to achieve her social goals.

Not only does accurate self-awareness help motivate the learning process, but it also leads to more efficient self-advocacy. With accurate knowledge one can plan better how to deal with otherwise frustrating situations. For example, the individual with fine-motor problems can ask for a laptop computer rather than get frustrated trying to deal with handwriting tasks. An individual with conversation skill difficulties might decide not to put herself in situations with high conversational demands, but opt instead for quieter environments to work or socialize.

Having a student evaluated

Getting information about a student’s pattern of strengths and challenges typically begins with a review of past and current educational, vocational, psychological, social, and psychiatric evaluations. Students identified as having special needs are entitled to such a comprehensive evaluation free of charge by their public school’s special education team. Students who are not recognized by their school system as having special education needs (because of good academic functioning) yet are experiencing many social difficulties may benefit from an evaluation by a qualified mental health professional (e.g., a psychologist, neurologist, or psychiatrist) experienced with autistic spectrum disorders or related social-communication difficulties. Such an evaluation should result in a report of diagnostic impressions and treatment recommendations targeting social or emotional supports. A variety of local and national autism organizations may be helpful in securing referrals to experienced clinicians.

A therapist, counselor, or thoughtful parent can review the results of past and current evaluations to help a student develop awareness of assets and challenges. This must be done with sensitivity to the student’s self-esteem, highlighting more assets than challenges, and detailing ways to compensate or remedy weaker areas. I have developed a form to summarize assets and challenges and plan ways to capitalize on strengths and compensate or remedy any challenges (see Appendix A in the back of this chapter). As described earlier, this form is not a substitute for thorough evaluations, but rather a convenient form to summarize the results of such evaluations.

Should a student be told their diagnosis?

Sometimes self-awareness involves the use of a diagnostic label. We might help the student understand that their particular pattern of assets and challenges is consistent with Asperger’s Syndrome, Autism, Pervasive Developmental Disorder-Not Otherwise Specified, or a related disorder. There are pros and cons to giving the diagnosis.

An accurate diagnosis has legal, financial, and personal advantages. Legally, the diagnosis may entitle the student to needed services through schools or compensation for treatment services through the family’s insurance company. Personally, the diagnostic label helps the student access information about the diagnosis, useful treatment options, and a community of individuals with similar disorders. Discovering there is a name for what you have and that past social difficulties were a result of this neurological disorder can free the student from self-blame and begin a path to self-acceptance. When confronted with other individuals who have the disorder and who model self-acceptance and successful futures, students can begin to accept themselves. It has been my experience that students with similar diagnoses have found great relief in talking with each other and have developed truly reciprocal friendships as they share experiences and interests.

Alternatively, some students have great difficulty accepting the notion of a disorder, perceiving it as an immutable defect causing unending social difficulty and unhappiness. Moreover, they may have received many conflicting diagnoses from different clinicians in the past. The diagnosis of Autistic Spectrum disorders, particularly for those with good intellectual ability, is often fraught with ambiguity. For example, professionals disagree as to whether Asperger’s can be distinguished from High Functioning Autism (see Klin and Volkmar, 2000, for a discussion of this issue). Similarly, the boundaries are not always clear between Asperger’s Syndrome, “normal” eccentricity, schizoid personality disorder, and social phobia. As a result, many students lose faith in the diagnosticians and resent being told what is “wrong” with them. Rather than force acceptance of a diagnosis, I would much prefer to focus on their pattern of assets and challenges. This acceptance is crucial for their growth. They must accept their talents to maintain self-esteem and understand their difficulties so they know how to navigate around them or get help. For example, you do not need an official diagnostic label to realize that you may need more practice with a desired sport if you have athletic coordination problems. Similarly, it is not a requirement to have a diagnosis to realize that you may need to work on interview skills to get a job you want.

At some point, awareness of a diagnostic label will be helpful to students when advocating for themselves with schools, employment settings, and insurance companies. Even if they do not accept the diagnosis, it is useful to know they could qualify for that diagnosis if they want to use it to get services that they may need.

Getting past denial and resistance

Table 1 outlines a number of approaches to motivate students to address their needs for training or related services.

TABLE 1: Motivating students to address their needs

1. Link needed training or services to meeting their own goals2. Make training or services enjoyable3. Use external rewards if intrinsic motivation is missing4. Shore up assets and strengths before addressing any challenges5. Testimonials from successful individuals with autism spectrum disorders6. Helping to teach others

Link needed training or services to meeting their own goals

If students express some future goals, it always makes sense to first link needed training or services (including social skills training) to the students’ own goals. If students want friends, a job, good grades, or to be able to engage in an activity (sports, clubs, or a special event), then teaching crucial skills can be linked to these goals. For example, many adolescents who never wanted to learn social skills suddenly develop motivation to learn certain skills in an effort to help them find a date.

Make training or services enjoyable

If services and training are fun and enjoyable, then this certainly increases the probability that students will accept those services. Chapter 6 outlines many strategies to keep social skills training fun and engaging.

Use external rewards if intrinsic motivation is missing

When students do not express any particular goals and show no intrinsic desire to address a particular challenge, external rewards can be considered. For example, students can be paid for attending a job training session so that they can eventually get a paying job. Similarly, students can be offered access to certain privileges (e.g., a ride to the movies, a trip to their favorite restaurant, or access to certain video games) for attending social skills training or other helpful services. If such external rewards are going to be motivating, they must in part be chosen by the student and varied so that the student does not become bored by any one particular reward. The long term goal of using an external reward is to get the student to attend the needed services long enough to improve some aspect of their life such that the student now sees the benefit of the service and no longer requires external rewards to attend.

Emphasize assets and strengths before addressing any challenges

Strategies cannot be so straightforward for the student who seems to have no goals, has become depressed and is withdrawing from the social world entirely. Many students with special needs deny or otherwise resist any mention of weakness or difficulty. It takes a modicum of self-esteem to tolerate thinking about what difficulties you have. Many students who have had many academic and social difficulties are in no position to tolerate any critical feedback about their behavior. Without being able to tolerate such feedback, personal growth is stymied. For example, the young man who greets others with the phrase “death to all” most likely needs to alter or expand his greeting repertoire if he wants to get into college or get a job. If we point out the need to greet others differently, he perceives it as a personal attack on his personality and either asserts that he no longer wants to go to college and get a job, or that the college admissions officers and employers should just learn to accept his greeting style.

Students who show this kind of denial or blaming of others cannot be forced to look directly at their challenges nor can they be asked to willingly learn new skills. Before this can happen, they may need to be convinced of their strengths. It is only in a position of some positive self-worth that they can tolerate hearing critical feedback about their behavior. So how can we improve a student’s self-esteem so they can tolerate constructive criticism so necessary for personal growth?

Individual counseling to map out assets and challenges

One way is through counseling that allows them to explore and experience their talents and strengths. For most students, it is helpful to have someone else point out two to three assets for every challenge that is highlighted. The student can be asked directly what talents and challenges they have and then the counselor can add or refine that list of strengths before delving into areas in need of improvement. Counselors and students can use results of educational, psychological, and vocational testing to identify assets and challenges and summarize them on the form in Appendix A in the back of this chapter. Because testing often highlights areas of weakness more than strengths, testing results must be filtered by a counselor or other adult to help the student identify a pattern in which more assets than challenges are described.

I have found it helpful to represent this pattern of assets and challenges graphically using the form in Figure 1. Figure 2 shows an example of this form filled out for a particular student. Several areas are highlighted that depict where the student is “well above average,” and a lesser number of areas are identified in which the student may need some improvement. Those challenging areas may dictate what skill areas we may first target for training and generalization.

Figure 1

Blank Graph of Assets and Challenges

Figure 2

Sample Graph of Assets and Challenges for a Student

Any discussion of challenges must be constructive in that it focuses on how to remedy the problem or compensate for it. Statements of challenges without any practical ways to handle the challenge are useless. For example, if a counselor wanted a student to understand that being on the basketball team might be difficult given visual-motor difficulties, constructive feedback should be offered on how to cope with that, such as outlining a way to over-practice those basketball skills until they improve, or to pursue other activities that tap natural strengths such as becoming the statistician for the sports teams, the sports announcer or joining another club that matches their interests.

Effective “self-esteem” counseling is not just talking about their strengths, but also includes real experiences in the sessions that demonstrate their abilities and leave them feeling successful. Through activities that allow the therapist to comment positively about the students’ strengths (e.g., journal writing, art, trivia games, spelling bees, geography challenges, composing or playing music, creating photos or films) students can begin to recognize their own competence.

Planning successful experiences outside the counseling office

Nothing is more self-esteem enhancing as real-life experiences in which the student is succeeding. For adults, finding appropriate employment builds self-esteem more than any amount of therapy could ever provide. Feeling that others value what you do, or “need” your services, is crucial for self-worth for most adults.

For high school and college students, academic and social demands may need to be modified to allow the student to experience success in their daily routines. For academic classes, this may include alternative classes, reduced homework, tutoring and any myriad of modifications stemming from a good evaluation of academic functioning (see Appendix A for areas in which modifications may be needed). Social modifications may include limiting the social demand by creating quieter and more structured environments instead of the typical noisy, unstructured social scenes in a high school or college cafeteria. In high schools, staff members may help facilitate lunch-time or after-school groups to teach social skills and create a supportive peer group. In college, special considerations may be made in dormitory living arrangements to assure the student is not isolated. These might include: pairing with dorm–mates who have similar interests, having the residential director check in regularly with the student to help encourage participation in dorm activities and meal-times, and to establish social support groups through the student counseling centers.

Once a student has experienced some success, then they can begin looking at possible challenges along with their strengths. Then they can plan for what kinds of help or accommodations they may want or need.

Testimonials from successful individuals with autism spectrum disorders

Hearing from successful individuals with autism spectrum disorders is an extremely powerful way to build self-esteem and better tolerate feedback about weaknesses. In Millburn High School, students with learning or social difficulties entering the 9th grade hear presentations from older classmen who have successfully managed their disabilities and gone off to successful internships and other academic experiences. This sets the stage for the new students to begin their journey to self-awareness of their strengths and learning challenges.

When live speakers are not available, learning and reading about highly successful individuals, both present and historical figures, can be helpful. Resources include autobiographies by individuals with autism spectrum disorders and biographies written about historical figures suspected of having an autism spectrum disorder (see Ledgin, 2001).

Helping to teach others

One way to reduce resistance to learning new skills is to have students participate in ways to teach others various skills. Through creating picture books, videos or live skits, students can demonstrate the skills to others. As such, they can learn a skill without having to acknowledge that they themselves needed to learn it. Chapter 6 outlines a number of these strategies to motivate participation in skills training activities.

Appendix A

Mapping assets and challenges: A form to summarize results of educational, vocational and psychological evaluations

Name: Date:

Next to each item, indicate if it is a strength or a challenge. For strengths, indicate how you might capitalize on that talent. For challenging areas, indicate how to compensate or improve in that area.

A. Academic

1. Knowledge base and interests

Assets: What can I do with this strength?

Challenges: How will I compensate or improve?

2. Verbal skills

A. Expressive—oral not written

1. Vocabulary

Assets: What can I do with this strength?

Challenges: How will I compensate or improve?

2. Fluidity

Assets: What can I do with this strength?

Challenges: How will I compensate or improve?

B. Receptive/Comprehension

Assets: What can I do with this strength?

Challenges: How will I compensate or improve?

C. Verbal abstract reasoning

Assets: How will I use that strength?

Challenges: How will I compensate or improve?

3. Calculation skills

Assets: What can I do with that strength?

Challenge: How will I compensate or improve?

4. Visual-spatial skills

A. Mechanical ability

Asset: What can I do with that strength?

Challenge: How will I compensate or improve?

B. Reasoning

Asset: What can I do with that strength?

Challenge: How will I compensate or improve?

5. Written Expression

A. Generating ideas

Asset: What can I do with that strength?

Challenge: How will I compensate or improve?

B. Organizing ideas

Asset: How will I use that strength?

Challenge: How will I compensate or improve?

C. Connecting ideas

Asset: How will I use that strength?

Challenge: How will I compensate or improve?

B. Behavioral/Emotional

1. Attention and concentration

Asset: How will I use that strength?

Challenge: How will I compensate or improve?

2. Impulse control: ability to wait for what you want, not interrupt, listen to all directions before starting a project.

Asset: What will I do with that strength?

Challenge: How will I compensate or improve?

3. Frustration control: ability to tolerate mistakes, challenging work, correction, teasing, stopping a favored activity.

Asset: What can I do with that strength?

Challenge: How will I compensate or improve?

4. Acceptance of authority: ability to assert yourself in a non-aggressive way, desire (not ability) to cooperate.

Asset: How will I use that strength?

Challenge: How will I compensate or improve?

5. Anxiety Issues: willingness to assert yourself rather than remain passive, willingness to initiate interactions with others, willingness to respond to others’ initiations; obsessive-compulsive symptoms; general phobias, panic attacks with or without agoraphobia.

Asset: How can I use that strength?

Challenge: How will I compensate or improve?

6. Depression issues: general mood, general self-esteem, hopefulness for self, world and the future, ability to sleep, eat and concentrate.

Asset: How can I use that strength?

Challenge: How will I compensate or improve?

C. Sensory Issues—sensitivities or need to seek out stimulation

1. Noise    2. Light    3. Smells    4. Taste    5. Touch

Asset: How will I use that strength?

Challenge: How will I compensate or improve?

D. Motor Issues

1. Fine motor problems

Asset: How will I use that strength?

Challenge: How will I compensate or improve?

2. Gross motor problems

Asset: How will I use that strength?

Challenge: How will I compensate or improve?

E. Social Issues

1. Generally I do too much of:

2. Generally I do too little of:

3. Fill out Social Skill Menu indicating which skills I need to work on.

Social Skill Menu

Name: Date:

Circle those items that may be a challenge for the student.

Nonverbal cues/Body language

1. Expressing and reading welcoming versus unwelcoming social cues

2. Interest versus boredom social cues

3. Sarcasm versus genuine expressions

4. Attending to others

5. Respecting personal space and belongings

6. Personal hygiene

7. Dealing with odd motor mannerisms

Dealing with anger/frustration

8. Understanding your anger

9. Identifying triggers to your anger

10. Altering or avoiding the triggers to your anger

11. Better ways to think about and deal with the triggers to your anger

12. Calming yourself when angry

13. Talking versus acting out your feelings

14. Using the Daily Anger Record

Dealing with anxiety

15. Dealing with anxiety and fear—understanding the alarm reaction

16. Dealing with unpleasant, intrusive thoughts and compulsive behaviors

17. Dealing with social fears

18. Dealing with new feared situations

Conversation

19. Saying hello’s and goodbye’s

20. Introductions

21. Politely interrupting

22. Maintaining and joining a conversation

23. Starting conversations with people you know

24. Getting to know someone new

25. POSTER: Summary of Starting and Maintaining Conversations

26. Conversation repair strategies

27. Politely changing topics

28. Being sensitive to the listener’s interests

29. Politely ending conversations

30. Answering the telephone and taking messages

31. Calling friends on the telephone

Building and maintaining friendships (and dealing with roommates)

32. Where to find friends

33. Don’t try too hard too soon

34. Sharing friends

35. Avoiding touchy subjects and insults

36. Complimenting

37. Respecting others’ views

38. Don’t impose rules on others (minding your own business)

39. Avoid bragging

40. Dealing with peer pressure and avoiding setups

41. Empathic listening

42. Showing caring for others’ feelings through supportive statements

43. Deepening relationships—sharing personal information

44. Conflict resolution/Assertiveness

45. Dealing with teasing

46. Showing good sportsmanship

47. Getting attention in positive ways

Dating

48. Where to find a date and how and when to ask someone on a date

49. Asking someone out on a date

50. Reading the signals—when to pursue a romantic relationship

51. Sexual harassment

52. Do’s and Don’ts on a date

53. Communicating clearly to meet each other’s needs

Dealing with school and family demands

54. Asking for reasonable modifications

55. Dealing with frustrating work

56. Accepting no or waiting for what you want

57. Asking nicely for what you want

58. Working cooperatively in groups

59. Dealing with mistakes and correction

60. How to respectfully disagree with teachers, parents, or supervisors

61. Dealing with stressful living situations

Employment skills

62. Choosing job/career directions

63. Conducting a job search

64. Writing a resume and cover letters

65. Scripts for networking with friends, relatives, and potential employers

66. Interview skills (and whether to disclose a disability)

67. Handling rejection

68. Do’s and Don’ts to maintain a job

69. Responding to criticism, accusations or complaints on the job

70. Exiting a job

Money Matters

71. Managing money

Preparing for Emergencies

72. Dealing with emergencies and emergency workers (such as police or hospital workers)

Transportation

73. Negotiating transportation

Chapter Four

College, Career and Residential Options Beyond High School: What parents can do to prepare their son or daughter by Rick Blumberg, Ph.D.

The first step in preparing your son or daughter for life after school is to develop a vision for the life you’d like them to have. To do this, it’s important to understand that everything is possible given the right types of support.

Where will he live? In an apartment, his own home, or some type of supported living arrangement? What type of work will she do? What type of supports will she need to get and keep a good job? Will she require some kind of post-secondary education or training to have the career she wants? What will he do for leisure and recreation? What kinds of support or skills training does he need to develop and maintain a vital social network?

Once you have developed a vision for the type of lifestyle and career that matches your child’s interests and preferences, you can think about the types of education, training, experiences, and supports he’ll need to be successful.

A few words about supports: Everyone needs supports to be successful in life. This isn’t unique to youths with autism or Asperger’s Syndrome. The important thing to know is the amount and type of supports your son or daughter wants and needs. This is determined by your knowledge of their abilities, skills, interests and preferences. There are three basic types of support that individuals use; people, materials, and services. For example, she might need a person (to help manage her household budget, or think through a problem); she might need materials to perform a task (calculator or computer) or a service (job development or coaching) to find, learn and maintain a job.

The intent of this chapter is to introduce concepts, strategies, tools and resources you will need to ensure that your son or daughter has a successful, meaningful and enjoyable life after high school.

I have known too many families that experience a sense of panic as their child’s last year of high school begins. They clearly sense the urgency of having only one more year of school to prepare for life after high school. They are facing the end of the security of the entitlement to services that IDEA provides. Ahead is a confusing array of government agencies, eligibility criteria, and veritable mountains of paperwork. There is a way to avoid the confusion and uncertainty—begin the process of planning, research, networking, accessing resources and developing supports early, no later than the first year of high school.

Table 1. Provides an overview of some of the educational, financial, career and residential options that parents and students should consider, and the activities that will help prepare students for them.

Table 1.

College

1. By age 14: Transition statement should include preference to attend college or not, and course and sequence that provide opportunity to do so should be laid out.

2. By end of freshman year: Review whether college is still part of vision. Does student understand their IEP? Consider requests for PSAT accommodations if needed, and the need for foreign language courses.

3. By end of sophomore year: Does vision still include college? Does student understand his/her disability and need for accommodations, and can they take a lead in IEP meeting? Can student discuss needs with teachers and request SAT accommodations if needed?

4. By end of junior year: Has student visited colleges? Has student communicated accommodation needs, taken SAT, begun considering financial aid for college?

5. By end of senior year: Pass the HSPA, enough credits to graduate, college acceptance, current testing documenting disability done within two years of graduating, can student take leadership role in obtaining educational needs.

6. Request accommodations in college as early as possible and supply documentation of disability.

Supplemental Income

1. By the end of freshman year, ensure the student has applied for and received a social security number and card.

2. By the end of sophomore year, investigate the eligibility criteria and required documentation to apply for SSI and SSDI benefits. Obtain required medical and other documentation for eligibility determination

3. By senior year, and/or prior to age 18, apply for SSI or SSDI benefits. Apply for Medicaid health benefits.

4. By senior year, investigate work incentive programs available through the Social Security Administration.

Employment

1. Begin planning for your child’s future employment and career beginning no later than freshman year of HS. If your vision includes post-school employment, follow the steps below.

2. By freshman year, or by age 14, ensure that your child’s IEP contains plans for career exploration and vocational preparation.

3. By the end of sophomore year, ensure that your child’s IEP contains plans for conducting a Functional Vocational Assessment.

4. By the end of sophomore year, ensure that your child’s IEP includes plans for career exploration including such activities as job shadowing, job sampling and/or internships.

5. At the beginning of junior year, apply for Vocational Rehabilitation services, and if your child is found eligible, request a technical consultation with a VR counselor.

6. By senior year, ensure that your child’s IEP has specific employment goals, including part-time employment during senior year, vocational training, internships, employment development and/or job search activities.

Residential

1. During freshman year, or by age 14, ensure that your child’s IEP contains plans to evaluate his/her independent living skills. If your child is likely to have complex support needs, consider person-centered planning.

2. By freshman year, apply for eligibility through your state division of developmental disability services. Obtain any documentation necessary to determine eligibility.

3. By junior year, ensure your child’s IEP includes plans to explore appropriate residential options such as group homes, supervised apartments and supported living programs.

Planning

Some young people and families know exactly what they want and need to be successful and happy. I haven’t met too many of these individuals, so for most readers, developing a vision of an ideal future for their son or daughter is an important first step. Because there are many things to consider and questions to answer, I find it’s helpful to have a process to use that guides your thinking and helps you to find good answers to difficult and often complex questions. One such process is called Person-Centered Planning.

Person-Centered Planning is an umbrella term used to describe several approaches to developing goals for the future and identifying the supports and resources a person may need to achieve his/her goals. What these planning processes have in common is that they:

are based on the perspectives of people who know the young person well

make use of both traditional systems (governmental and private service providing agencies) and natural supports (family members, friends, church groups)

begin with how the person wants to live or work today, as a starting point for thinking about the future

ensure that the person with a disability is heard, regardless of the severity of their disability

To learn more about Person-Centered Planning, explore these websites:

www.elp.net

www.allenshea.com

www.capacityworks.com

Post-Secondary Education

The process of thinking about post-secondary education should begin no later than your son/daughter’s freshman year. As early as possible, schedule a meeting with his guidance counselor to discuss his post-secondary goals, and review the information about his disability and its impact on learning and academic achievement. Discuss the high school courses and credits your child will need for college admission, as well as the schedule of tests he will need to take. Each year, your child’s IEP should include the activities and coursework necessary to prepare her to meet her post-secondary goals. Discuss the accommodations and adaptations that will help your child be successful in coursework, testing and extra-curricular activities.

Youths with autism and Asperger’s Syndrome often possess the ability to perform well in academic coursework. However, many young people we know require specific types of support and accommodations to be successful in academic and social environments. After high school, the entitlement for students with disabilities to a free and appropriate public education ends. However, there is federal legislation that mandates the right of your child to accommodations and supports in post-secondary institutions. Because it is the responsibility of the student to know his/her rights, and to request reasonable accommodations, it is important for you and your child to be familiar with these laws and their implications for your son or daughter’s post-secondary education.

Section 504 of the Rehabilitation Act was designed to ensure that post-secondary programs do not discriminate against students on the basis of a disability. Section 504 requires any program (college or school) that receives federal funding to provide accommodations for qualified students. Most colleges and schools receive federal funding. That means that if you can document that your son or daughter is a person with a disability and that they are otherwise qualified to attend the program (e.g., have finished high school and/or have taken the appropriate coursework), the program must provide him/her with reasonable accommodations, or the supports that will enable him/her to succeed.

The Americans with Disabilities Act (ADA) requires that people with disabilities be provided with equal access to public programs and services. The ADA adds to the rights of students with disabilities protected by Section 504 by requiring post-secondary programs to make their physical sites accessible for example, providing ramps on buildings and reserved spaces in parking lots. The ADA also requires that programs make information about their programs and communications about goods and services accessible. That means that if a program uses the internet for communication, the web-site must be accessible for students using adaptive technology. Informational materials and software for coursework must also be accessible.

So, what is an accommodation?

An accommodation is a legally required modification or service that gives a student with a disability an equal opportunity to benefit from education or training. Some examples of accommodations include:

Changes to the classroom environment or task

Removal of physical barriers

Changes to policies, practices and procedures

Provision of aids and services

Other adaptations or modifications that enable students to enjoy equal access to the benefits and privileges of the programs services and activities