Books, Videos and Other Resources

Glossary, Organizations and Resources Activities of daily living (ADL): Basic tasks of everyday life, such as eating, bathing, dressing and toileting. Asperger’s syndrome (AS): A neurobiological disorder characterized by normal intelligence and language development but autistic-like behaviors and marked deficiencies in social and communication skills. Asperger’s syndrome is addressed in the DSM-IV. Association of Community Rehabilitation Education (ACRE): An organization of trained and educated community rehabilitation personnel. Autism Society of America (ASA): An organization that promotes education, awareness, and advocacy on critical issues related to ASD (www.autism-society.org). Autism spectrum disorder (ASD): Also known as pervasive developmental disorder (PDD), a disorder that causes severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others. ASD ranges from a severe autistic disorder and pervasive development disorder not otherwise specified (PDD-NOS) to a much milder Asperger’s syndrome. Also included are Rett’s syndrome and childhood disintegrative disorder. Basic living requirements (BLR): A table of net income and liquid assets used to determine if an individual with a disability must participate in the cost of services (Texas Rehabilitation Manual). Developmental disability (DD): A severe, chronic disability, either mental or physical, that manifests by age 22, is perpetuated throughout the lifespan, poses limitations in areas of basic functioning, and requires lifelong care. Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV): A manual published by the American Psychiatric Association that provides diagnostic criteria for the most common mental disorders. It also describes the disorder and includes information on diagnosis, treatment, and research findings. Gilliam Autism Rating Scale (GARS): A diagnostic tool used to identify, diagnose, and estimate the severity of the disorder from ratings on four subtests: stereotyped behaviors, communication, social interaction, and developmental disturbances. Habilitation: Lifelong support. Home and Community Based Waiver (HCBW): A Medicaid program used to fund services not otherwise authorized, such as respite care, home modifications, nonmedical transportation, case management, and personal assistance services. Impairment-Related Work Expenses (IRWE): Work expenses due to a disability that can be used as a deductible and reimbursed. Incidental teaching: An interaction between two people that occurs in a natural situation and is used to give one of the individuals an opportunity to practice a skill. Individuals with Disabilities and Education Act (IDEA): A U.S. law established to improve the quality of life for infants, toddlers, children, and youth with disabilities. Institute on Rehabilitation Issues (IRI): A national forum for discussing important challenges facing the state-federal vocational rehabilitation programs and the community rehabilitation program partners that is followed by a publication used in training. Job coaching: Guidance in vocational decision-making such as job identification, skills training, job placement, support, supervision, and postemployment follow-up services. National Association for Residential Providers for Adults with Autism (NARPAA): An organization created to ensure the availability of residential services and continuity of care (www.NARPAA.org). National Family Caregivers Association: The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being. http://www.nfcacares.org. Obsessive-compulsive disorder (OCD): An anxiety disorder characterized by recurrent, unwanted thoughts (obsessions) and/or repetitive behaviors (compulsions). Person-centered planning (PCP): Planning that involves building services tailored to the individual with a disability or an involved family member. Picture exchange communication system (PECS): An augmentative communication system developed to help individuals quickly acquire a functional means of communication. Positive behavior support (PBS): An empirically validated, function-based method used to eliminate challenging behaviors and replace them with pro-social skills. Power cards: A tool or technique that promotes the use of an individual’s special interests to engage him or her in work, activity, or learning. Self-advocacy: The process of reducing societal barriers through full inclusion of persons with disabilities in the community. Social coach or mentor: Someone who can help the individual prepare for social activities through planning and role playing. Social story: A presentation of appropriate social behaviors in the form of a story. Test of Nonverbal Intelligence (TONI): A test that measures nonverbal analogical reasoning, categorical classifications, and sequential reasoning in two different contexts: pictures of familiar objects and geometric designs. Theory of mind: The notion that individuals with autism do not understand or have difficulty understanding that other people have their own plans, thoughts, and points of view. Entries from the glossary can be found in: Dew, D. W., & Alan, G. M. (Eds.). (2007). Rehabilitation of individuals with autism spectrum disorders (Institute on Rehabilitation Issues Monograph No. 32). Washington, DC: The George Washington University, Center for Rehabilitation Counseling Research and Education. Books, Videos and Other Resources Dew, D. W., & Alan, G. M. (Eds.). (2007). Rehabilitation of individuals with autism spectrum disorders (Institute on Rehabilitation Issues Monograph No. 32). Washington, DC: The George Washington University, Center for Rehabilitation Counseling Research and Education. Autism - preparing for adulthood. Patricia Howlin. Routledge. ISBN 0 415 11532 9. Winner of the 1997 NASEN book award. Focuses on adults and adolescents at the higher end of the spectrum, who are more likely to live independently in the community, less likely to receive services and the demands made by the world are much greater. Looks at the difficulties with communication, social functioning and obsessive behaviors and how they affect adults. Examples are taken from real life. Practical and helpful ideas with chapters on secondary and further education, employment, legal issues, sexual relationships and fostering independence. For Parents and Professionals: Autism in Adolescents & Adults. Kathie Harrington. Moline, IL: LinguiSystems. Strategies for working with adolescents and adults in the areas of behavior, communication, employment, leisure time, responsibility, sensory regulation, social adaptation and transition. Careers (1999) Temple Grandin offers advise to individuals with autism spectrum disorder on choosing a career and obtaining employment. Asperger Employment Guide: A workbook for individuals on the Autistic spectrum, their families and helping professionals. Roger Meyer. London: Jessica Kingsley Publishers. Roger Meyer is the executive director of The Portland Asperger Syndrome Project and was diagnosed with Asperger's Syndrome in 1997. A practical manual for adults with Asperger Syndrome to increase selfunderstanding and assess employment potential and a valuable book for agencies developing/ supporting employment opportunities for adults with AS. Developing Talents: Careers for Individuals with Asperger Syndrome and High-Functioning Autism by Temple Grandin and Kate Duffy; Foreword by Tony Attwood, Autism Asperger Publishing Company, 2004. www.asperger.net. This career planning guide is written specifically for highfunctioning adolescents and young adults on the autism spectrum, their families, teachers, and counselors. The two authors weave together a unique blend of information and advice based on personal experiences. Temple Grandin draws from her own experience with autism spectrum disorders and her professional career, and Kate Duffy uses her expertise on employment issues and the mother of two teenagers with autistic-like behaviors. The result is an extremely useful and practical book that introduces step-by-step processes for the job search with a major section on the impact ASD has in the workplace, including managing sensory problems, how to nurture and turn talents and special interests into paid work, jobs that are particularly suited to individuals on the spectrum, and much more. Firsthand accounts of job experiences and advice from individuals representing a broad range of careers particularly suited for high-functioning individuals on the autism spectrum round off this exciting new resource. Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum Editor: Stephen Shore; Foreword by: Temple Grandin, Contributing Authors: Kassiane Sibley, Stephen M. Shore, Roger N. Meyer, Phil Schwarz, Liane Holliday Willey, Autism Asperger Publishing Company, 2004. www.asperger.net. Edited by Stephen Shore, author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum aims to help people with autism effectively self-advocate in their pursuit of independent, productive, and fulfilling lives. Ask and Tell is unique by being the first book to speak to the twin issues of self-advocacy and disclosure for people with autism and by consisting exclusively - including the cover art and the preface by Temple Grandin - of contributions by those on the autism spectrum for persons on the spectrum. Many Shades of Success: Other Views of Post-Secondary Options Edited by Teresa Allissa Citro. This book is geared towards students who will plan other paths for their post-secondary options. Parents and the professionals who work with them will be presented with many options. The ideas offered in this book will help guide parents and make a positive difference in the lives of children. Succeeding in College with Asperger Syndrome: A Student Guide by John Harpur, Maria Lawlor and Michael Fitzgerald. College Life is particularly stressful for students with Asperger Syndrome. This much-needed guide provides information to help these students prepare successfully for study, interact with staff and fellow students, cope with expectations and pressures and understand their academic and domestic responsibilities. How will I cope with the workload? How do I make friends and initiate relationships with the opposite sex? Drawing on first hand interviews with AS students and direct clinical experiences, the authors address these and many other questions, demystifying the range of college experiences for students with AS and providing benefits that will continue throughout the college years and beyond. Asperger Syndrome: An Owner's Manual 2 For Older Adolescents and Adults: What You, Your Parents and Friends, and Your Employer, Need to Know Ellen S. Heller Korin, M.Ed., Autism Asperger Publishing Company, 2007. A Guide to Adult Living for Those with AS… Asperger Syndrome: An Owner's Manual 2 for Older Adolescents and Adults is the eagerly anticipated sequel to Asperger Syndrome - An Owner's Manual, primarily written for middle school-age children. Using the same easy-to-follow format, this interactive workbook deals with issues that older adolescents and adults face such as relationships, marriage, independent living, employment, self-care, etc. The author uses the nonagram, a nine-pointed star symbolizing achievement and completeness to visually guide readers through each major section of the book. This much-needed resource is designed to inform and support individuals with AS as they come to grips with their strengths and challenges and plan for a successful adulthood within the neurotypical world. Asperger Syndrome: Transition from High School to College and Work. (2001). Length: 57 minutes. Produced by Coulter Video. This video features Drew Coulter, a young man with Asperger’s Syndrome, and includes interviews with professionals who provide practical suggestions for individuals with Asperger’s Syndrome who are interested in attending college or obtaining a job. Recommended for individuals with Asperger’s Syndrome who are transitioning out of high school, for family members, or for professionals involved in this process. For ordering information, contact Coulter Video online at www.coultervideo.com. Asperger Syndrome: Transition to Work. (2001). Length: 34 minutes. Produced by Coulter Video. This video describes what you people with Asperger Syndrome need to do to find and hold a job. Topics covered include making a good job match, approaching employers, learning key workplace skills, addressing disclosure issues, and negotiating accommodations. Features Dr. Peter Gerhardt. Recommended for individuals with Asperger’s Syndrome, families, and professionals interested in pursuing employment options. For ordering information, contact Coulter Video at 1-336-794-0298 or online at www.coultervideo.com. Careers: Opportunity for Growth/Developing Careers for High Functioning People with Autism. (1999). Length: 30 minutes. Developed by Future Horizons. This video features Temple Grandin speaking about obtaining and maintaining employment. Specific topics addressed include preparation for work, job options, the role of mentors, social behaviors in work situations, and other related topics. Temple offers her personal insights and perspectives. Recommended for use by professionals, family members, and individuals with autism spectrum disorders interested in examining employment options. For ordering information, contact Future Horizons at 1-800-489-0727 or online at www.futurehorizonsautism.com. Starting A Group Home From Scratch. (1997). Length: 43 minutes. This video provides practical recommendations for those involved in opening a group home for individuals with autism spectrum disorders. Issues discussed range from funding and Medicaid, governance, purchasing and renovating a home, staffing and supervision, and other logistical considerations. Recommended for adult providers, or individuals and families interested in creating group home options. For ordering information, contact Autism Services Center at 1-304-525-8014 or online at www.autismservicescenter.org/. Understanding Autism. (1996). Length: 24 minutes. Distributed by Films for the Humanities and Sciences. This documentary focuses on the social and health programs in Canada that provide support for people with autism outside the home. An individual with autism and his family highlight the struggles encountered in achieving freedom and independence. This documentary also explores a group home for young adults with autism. Appropriate for family members of adolescents and adults with autism spectrum disorders, and adult agency personnel. For ordering information, contact the Films for the Humanities and Sciences at 1-800-257-5126 or online at www.films.com. Untapped Talents: Pursuing Employment. (2001). Length: 19 minutes. Produced by Kim Davis/Indiana Resource Center for Autism. Individuals across the autism spectrum have dreams and desire to be contributing members of their community. Part of that dream is to have a job that is meaningful and interesting to them, not simply a job that is based on their disability or diagnosis. This video highlights the various issues surrounding employment, and presents practical information about accommodating and supporting individuals in job situations, including the social aspects of a job setting. For ordering information, contact the Indiana Resource Center for Autism at 1-812-855-6508. What Will You Do? Employment Opportunities for People with Disabilities. (2000). Length: 10 minutes. Produced by the Center on Community Living and Careers, and the Indiana Resource Center for Autism at the Indiana Institute on Disability and Community. This video introduces the viewer to supported employment opportunities awaiting people with disabilities. Through visiting a variety of work settings and interviewing many people, the two young men in this video discover the options available after school. Recommended for families, employers, and those who are investigating job options. For ordering information, contact the Indiana Resource Center for Autism at 1-812-8556508. Families, Residential Facilities and Other Important Influences on Vocational Placements for Clients with Autism Spectrum Disorders Sherry A. Moyer NHS Human Services smoyer@nhsonline.org Today’s Objectives Participants will be able to demonstrate interviewing and communication strategies that support productive relationships with family members or caregivers. Participants be able to identify the psychological effects of living with family members who have developmental disabilities. Participants will be able to provide strategies for staff in residential facilities to improve vocational outcomes. Participants will review all major concepts from previous 4 days of training series. Family or Caregiver Dynamics and Their Influence on Successful Vocational Placement Families and Caregivers provide… A source of historical information about your clients Care that allows your clients to function Economic support that may not in many cases be available otherwise A safe haven for your clients to escape from daily challenges and stress Families and Caregivers also… Become role models for varieties of behaviors Foster both dependence and independence May seek to shelter their adult child from responsibility or realities of life Isolate themselves from available resources within their communities Struggle to keep up with case management activities Have varying levels of knowledge regarding Autism Spectrum Disorders The National Family Caregivers Association Survey (1997) showed the common bonds of caregiving are… Intense sadness and pain Longing for the miracle of normalcy. Frustration as a result of changing family dynamics. Isolation which comes from living outside the norm. Disappointment over the lack of understanding of noncaregivers. And… Stress over the increased and enormous responsibilities. Depression over all the losses sustained by caregiving. Fortitude and power to go on and make a difference. Resourcefulness in our problem solving abilities. Strength in the knowledge we can survive. The primary role of a vocational rehabilitation professional is to facilitate the exchange of information with family members that will positively influence the client’s vocational outcomes. One Example Zach is a 28-year-old with Autistic Disorder who often has behavioral disruptions that have interfered with his employment. The professionals working with Zach have tried a number of reinforcements for completed work however the disruptions continue to occur and his placement is in jeopardy. The Voc Rehab professional thought to ask Zach’s family members about his behavior and discovered that when Zach has a picture schedule using photographs he does a much better job of staying on task because he is not confused about what step comes next. Let’s Try One! You must get the following information Why has the adult child been unable to keep a job? What do the parents do that would help the adult child become independent? What happens at home that might interfere with successful vocational placement? Rules for Working With Families or Caregivers Families and caregivers are the gatekeepers to your client! Work with families to craft priorities and gain support. Remember that your objective is successful vocational placement, make this clear to everyone! Be honest, focused only on the objectives and concrete in your communication. Do NOT use language that conveys value judgments. Examples of Language that Implies a Value Judgment “Jess doesn’t make good choices at work.” “ Stephen seems uninterested in getting the job done.” “Amy’s parents are way too over protective for her own good.” “ Kevin’s family has given up trying to push him to be independent.” “ The other employees are pissed about Tom’s weird comments.” Let’s Try This Again! Reframe your questions and get better answers Why has the adult child been unable to keep a job? What do the parents do that would help the adult child become independent? What happens at home that might interfere with successful vocational placement? How about the influence of residential placements on successful vocational experiences? How Our Home Life Can Positively Contribute to Success on the Job Opportunities to relax and forget about work Fostering a sense of self-confidence that carries over to work Promote positive behaviors on the job Chance to build positive relationships or social skills Provide a “safe haven” for organizing thoughts, encouraging development of adaptive skills that carry over to work environment How Our Home Life Can Negatively Contribute to Success on the Job Over crowding Poverty Promote negative or disruptive behaviors on the job Insufficient structure/Overly structured Poor nutrition Exposure to inappropriate behaviors Volatile or unhealthy relationships Isolation Lack of supervision Personal Safety Potential Indicators of Trouble Increase in absence from work Unusually poor hygiene Increase in disruptive behaviors Deterioration in productivity or work product Fear/dread of going home Elopement Signs of physical or psychological abuse Remember… Your interest in a client’s living conditions is centered on the extent to which it influences their success on the job. What You Can Do… Share what you know about your clients without violating privacy/HIPPA Support staff by suggesting successful modifications Support the client by asking concrete questions regarding home life Do not hesitate to seek help from supervisors at the home or other professionals if you suspect that your client’s performance at work is related to the current living conditions Now let’s look at some real life case studies Our Trainings In Review! Vital Areas for Assessment of Individuals With Autism Spectrum Disorders Social Cognitive Behavioral Communication Sensory Adaptive Vocational Positive and Successful Interviewing Techniques Specific close ended questions Concrete concepts Use of operational definitions Brief explanations Probing for clarity Framework for setting goals or criteria Additional time for processing Alternative methods of presentation Concern for client priorities Use visuals Sample Interview Questions Please tell me about your life as a child and growing up in your family. How has having Asperger syndrome/autism affected you? What are some of the jobs you have had during your lifetime? How long were you employed at them? Why did you leave those jobs? Did you disclose your Asperger’s diagnosis to anyone at your jobs? If so, how did they respond? Was it beneficial to you? If you have not disclosed this information at any jobs, why not? Were your job expectations clear at your jobs? What were your relationships with your employer and your co-workers like? What type of support or accommodations, if any, would make your job more successful? 8. What is your ideal job? (Hurlbutt & Chalmers, 2004) Typical Comorbid Medical Diagnoses With Autism Spectrum Disorders Intellectual disability or Mental Retardation Cognitive Impairments/Executive Function Receptive or Expressive Language Disorder Seizure Disorders Auditory Processing or Deafness Sensory Processing Varying degrees of visual challenges/blindness Language delays or lack of development Typical Comorbid Mental Health Diagnoses With Autism Spectrum Disorders Anxiety Depression OCD Bipolar Disorder Intermittent Explosive Disorder Oppositional Defiant Disorder ADD/ADHD The Formula for Job Match Results of a thorough assessment Clients strengths and challenges Client input, special interests and direction + + = A well informed choice of vocational placement that while not without its faults will likely be a good place to start and provide a positive experience even if it is not long-term. Introducing the Work Environment Describe the work environment in terms of each skill area covered in the assessment. Don’t forget to include strengths and weaknesses. Seeing is believing! Provide a commitment free trial or test session. Meet with a boss and a colleague. Discuss the social demands of the job. Work Readiness Skills Communication Skills—Oral, written, and presentation Skills Basic Math and Technical (Computer) Skills Execution Skills—Problem-solving, following instructions, and carrying out multiple tasks—knowing how to work and get things done Work Ethic—Motivation and drive, realistic expectations about what is necessary to advance, and respect for self and colleagues Conduct and Deportment—Appropriate workplace etiquette and behavior The Social Nature of the Work Environment A key finding in this study was the importance employers placed on “soft skills” for entry-level positions, including communication and “people” skills. The demand for “soft-skills” stems from an increased emphasis on customer service. High quality customer service was found to be increasingly important for staying competitive in many markets. Achieve, Inc., Achievement Data Profile, April, 2006. http://www.achieve.org/files/Data%20Prfile%202006%20-%20Massachusetts.ppt#423 Social Concerns As Related To Successful Employment Relational boundaries Understanding of need for positions of authority Ability and degree of need to communicate or interact with other employees Social competence which is based on the sum or results of assessment in all other areas of functioning Social Priorities of My Job Appropriate Dress Appropriate Hygiene Formality of the Environment Supervisory Structure Informal Social Demands Informal Communication Use of Free Time Schedule Disclosure to Colleagues Behavioral Concerns As Related To Successful Employment Known triggers Disruptive behaviors Predictable patterns of behaviors Ability to self-direct or monitor Self-regulation Need for behavior analysis? Crisis plan Some Realities About Behavior In General EVERY behavior occurs for a reason, human beings are not random thoughtless creatures. Behaviors are a response to the circumstances in the environment at any given moment. The behaviors that we exhibit may not be the most appropriate however they are usually the most readily available at that moment and often come without much thought or consideration of the consequences. The Short Answer Regarding Functions of Behavior Escape/Avoidance: confusion, fear of failure Attention-Seeking: Unsuccessful social interaction, leftover anger Gain access to a preferred item/activity: break time, lunch time, time to go HOME Automatic reinforcement: paycheck! Biological: SEX, exhaustion, stress, emotions. Behavior Specific to Autism Spectrum Disorders You should know that self-regulation challenges are FUNDAMENTAL issues for people with ASDs. You do not have to be an expert in ASDs to positively affect client outcomes. Clear and VERY SPECIFIC communication and patience will become your best tools for success. Adaptive Behavior Concerns As Related To Successful Employment Hygiene Any current adaptive strategies being employed Use of visuals, augmentative devices Willingness to ask for help Transportation/navigation Paperwork, record keeping Money management Principles of Sexuality that Affect Social Success at Work… 1. The difference between kindness and attraction. 2. The difference between public and private. 3. No matter what your reasoning, certain behaviors are just plain illegal. 4. Sexual behaviors will be some of the most socially confusing that you will EVER experience. 5. No matter what you see in the movies or on TV, there is NO appropriate time for sexually oriented behaviors at work. Components Skills of Self-Regulation identifying goals creating strategies to achieve the goals self-monitoring performance for evidence of progress configuring physical and social contexts to support achievement of goals time management self-evaluating methodologies attributing causation to results adapting future methods Schunk & Zimmerman (1994; 1998) What To Tell Employers People with Autism Spectrum Disorders rarely miss work, work well in established systems, are reliable if supported correctly and can make substantial contributions to an organization. Strategies for Supporting Employers Disclose information necessary for individual to successfully complete the required task, cost-benefit analysis Don’t be afraid to craft a specific job in order to have job match Collect data to prove positive outcomes More Strategies For Employers Educate relevant management and coworkers, create reasonable expectations Have a plan for responding in the event of a crisis Identify mentors or “safe people” for client to access help Make job duties, schedules and social expectations concrete and consistent Back to those case studies! Thanks for Having Me!!! Sherry A. Moyer, B.S. Regional Asperger Syndrome Consultant NHS Human Services smoyer@nhsonline.org