Toolkit for Medical Professionals. Tips & Supports for Working with Individuals with Autism Spectrum Disorders

Transcription

1 Toolkit for Medical Professionals Tips & Supports for Working with Individuals with Autism Spectrum Disorders

2 HANDS in Autism Program Christian Sarkine Autism Treatment Center The mission of the HANDS in Autism Program is to continually evolve a model system of training that will facilitate the development of local capacity within schools, districts, and communities in serving individuals and families affected by autism spectrum disorders (ASD). The purpose of this model is to continually build on the existing foundation of knowledge and services to provide increasing levels of development and support for individuals with autism spectrum disorders. Such services are based the individual s needs and abilities as well as stage of transition and lifespan development. We ultimately wish to enable caregivers and service providers to become selfsufficient within their own communities by developing local specialists equipped to address the multiple issues associated with serving individuals with autism spectrum disorders. This mission will be accomplished by achieving two primary goals: 1) bridging across multiple environments (educational, medical/clinical, and home/community) to establish a common language and collaborate in creating comprehensive, proactive programming across multiple settings; and 2) training professionals to provide individualized programming based on best practices and data-driven decision making. The first goal will be achieved through a variety of activities. We will improve communication between educational professionals, medical/clinical professionals, parents/caregivers, and their community members by increasing liaison and collaborative efforts. Additionally, we will present results of our research and disseminate outreach materials throughout the nation. The second goal will be met through a layered approach to information dissemination and training, including a variety of informational materials, hands-on workshops, our week-long summer training program, program-wide consultation, and our collaborative classrooms embedded within local schools.

3 Introduction iii How is This Toolkit Organized? Within this toolkit you will find a variety of documents to help you provide the best possible care for your patients with an Autism Spectrum Disorder and their families. The first four sections of the toolkit are set up similarly: Each section contains checklists to ensure you are addressing important issues with your patients. You ll find information you can read to learn more about the topic of focus for that section. In most sections, you will also find information about things you can do support your patient s and their families during your clinic visits. Towards the end of each section you may find brochures and flyers from a variety of community organizations You will also find a list of places to go for more information, including references and websites that may be of interest. Finally, each section ends with a notes page where you can write additional tips or resources as you learn them. The final section of the toolkit is organized differently from the first four. It begins with a checklist to help you decide which materials may be of most use to your patients. The rest of the section is filled with handouts and resources you can photocopy and share with your patients and their families. The development of this project was facilitated by Grant Number E!!/CCU from the Centers of Disease Control and Prevention and other charitable organizations. The ongoing efforts of the project are primarily and currently supported through a grant from the Center for Exceptional Learners, Indiana Department of Education under Part B of the Individuals with Disabilities Education Improvement Act (P.L ). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of our sponsors. In citing this publication, please use the following reference: HANDS in Autism. Toolkit for Medical Professionals: Tips and Supports for Working with Individuals with Autism Spectrum Disorders, Indianapolis, IN: Christian Sarkine Autism Treatment Center, Riley Child & Adolescent Psychiatry Clinic, Indiana University School of Medicine - Department of Psychiatry; This Toolkit can be downloaded from the HANDS in Autism website at: Requests for a CD/DVD with the files, should be directed to hands@iupui.edu or call: (317) NOTE: Medical professionals within the state of Indiana who have questions regarding the creation or appropriate use of visual supports are encouraged to contact us at hands@iupui.edu for support. Developed by HANDS in Autism 2008

4 iv Toolkit for Medical Professionals Table of Contents How is This Toolkit Organized? References Accessing Medical Literature in Your Community iii viii viii 1 First Concerns What if I (or the parents) have concerns about a patient? 10 What is an Autism Spectrum Disorder? 11 Questions to Ask Families Concerned about ASD 12 Places to Go for More Information 14 References 14 Online Resources for Diagnosis & Screening 15 Screening Tools 15 M-Chat 16 Autism Screening Poster 18 CDC Act Early Resources Sheet 19 2 Referral Checklist of Questions to Ask Families about Education and Intervention 21 Departments at Riley 22 Information about the Various Treatments for ASDs 23 Empirically Based Treatments 23 Alternative Treatments 24 How to Select Treatments for ASD 26 Places for Families to Go for More Support 27 References 27 Excellence in Research Brochure 28 Autism Resources List 30 3 Understanding Children with an Autism Spectrum Disorder Checklist of Questions to Ask Families of Already Diagnosed Individuals 33 Characteristics of Autism 35 Family Issues 38 Perspectives of Professionals and Parents 38 Resources 39 References 39

5 4 Tips for a Successful Clinic Visit Introduction v Checklist of Questions to Ask Families to Support Clinic Visits 42 What Can Staff Do to Support Patients During Clinic Visits 43 Visual Strategies 44 Simple Things to Try in Your Clinic 45 Places to Go for More Information/Access to Visual Supports 46 Visual Schedules 47 Sample Schedules 47 Making a Visual Schedule 48 Pulley Cards 50 Help, Wait, and Break Cards 50 Pulley Cards 51 Other Useful Visual Supports 52 Making Visual Supports 53 Reward Systems 56 Reward Schedules 57 Token Boards 58 Sample First-Then Board 59 Social Stories 60 A Sample Social Story 61 General Guidelines for Social Story Use 62 Sensory Kits 63 Your Next Patient Has Autism Reinforcer Checklist 69 Sensory Considerations 72 Sensory Considerations 72 Social Story - Going To The Doctor 74 Social Story - Getting My Vitals Taken Is Ok 81 Social Story - Getting a Shot is Ok 85 5 Handouts for Families What handouts do I give to a parent if s/he asks 90 Autism Overview 91 Common Misconceptions about Autism Spectrum Disorders 94 Medicaid Waiver Information 95 Why do we utilize visual strategies with ASD individuals? 96 Enjoying Your Child 97 Enjoying Your Child in Play 97 Finding the Right Support Group 98

6 v i Toolkit for Medical Professionals Evaluating Treatments for Children with Autism Spectrum Disorders 99 Considerations for Evaluating Specific Treatments 99 Common Medical Terminology 100 Six Effective Educational Components for ASDs 101 Know Your Legal Rights in the Schools 102 Websites 102 Online Resources for Treatment Information 103 References 103 Center Brochure 104 CDC MMR Vaccine Statement 106 What is autism? 109 Autism Spectrum Disorders Overview 111 Helping Families with Medical Bills & Insurance 113

7 Introduction v i i Dear Medical Professionals, In 2004, the outreach and education component of the Christian Sarkine Autism Treatment Center (CSATC) was expanded through the development of the HANDS in Autism (Helping Answer Needs by Developing Specialists in Autism) program. The mission of this program was to extend the outreach training of a range of professionals by providing practical information, appropriate in level and format for the professionals to use the information. In addition, the program was to enable increased collaboration across medical/clinical, educational and community systems. To this end, the HANDS in Autism program is proud to present this toolkit, which contains a wealth of practical information for medical professionals working with individuals with an Autism Spectrum Disorder (ASD), or Pervasive Developmental Disorder (PDD), as it is known in the clinical literature. The information has been designed and packaged so as to be particularly useful to physicians and their medical staff who are working with these individuals. Please note that this toolkit is designed to serve as the companion piece to the Next Steps Manual, which is designed for parents and caregivers of children with an ASD. The Next Steps Manual is available online at Due to the high prevalence of Autism Spectrum Disorders (ASDs), most medical professionals may find that an increasing number of their patients are diagnosed with an ASD. In fact, ASDs are more prevalent in childhood than diabetes, cancer, spina bifida, and Down syndrome (Filipek et. al., 1999). Recent statistics suggest that 1 out of 150 children have an ASD (Center for Disease Control [CDC], 2007). To effectively meet the needs of these individuals and their families, it is important to have a solid understanding of the disorders; how to screen for the disorders, how they are diagnosed, effective intervention strategies, and appropriate options for referrals. It is also important to understand why early diagnosis is so essential. Early diagnosis allows families access to early intervention, which has been show to impact long-term outcomes (Hume, Bellini & Pratt, 2006). Because the symptoms of ASDs can be difficult to identify due to overlap with many other conditions (APA, 2000), it is important to have a clear understanding as to which behaviors warrant further and more specialized evaluation such that identification and treatment intervention is possible. Although you may have a general understanding of ASDs, the practical experiences you have with your patients may not always match experiences detailed in textbooks. This toolkit will provide examples of what you may notice clinically in your patients as well as a large number of practical tips on how you can work most successfully with them. Samples and pictures to supplement these tips are also included. The section on intervention is included because the patients with whom you work will likely either be engaged in or considering various interventions related to their ASD and will want some guidance regarding their choice. It is important that you be aware of some of the most common interventions available, sources of information options for acquiring service, as well as the differences between those interventions that are empirically supported and those that are not. Individuals with ASD generally are strong visual learners; planning for visits by having visual tools available prior to their visit will assist in the likelihood and success in using them during the visit. As such, this toolkit has a number of samples of visual supports that may help you to support your patients during their visits. You may also find that many patients with ASD seek out sensory stimulation to calm themselves or reduce anxiety. You will find in this toolkit a great deal of information on how you can help your patients by providing some access to sensory materials and outlets during office visits. In general, we have incorporated a range of materials for use by you for your own reference as well as to Developed by HANDS in Autism 2008

8 viii Toolkit for Medical Professionals share with your families to help them navigate in learning about the disorders and services available. We would love your feedback to improve upon the uses and application of this tool feedback can be ed to us at or submitted at the following link px?sm=hchbmycnoeb2upuctatp8g_3d_3d. Thank you, Naomi Swiezy, Ph.D., HSPP Alan H. Cohen Family Scholar of Psychiatry Associate Professor of Clinical Psychology in Clinical Psychiatry Clinical Director, Christian Sarkine Autism Treatment Center Program Director, HANDS in Autism Riley Hospital for Children and IU School of Medicine Re f e r e n c e s American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (DSM- IV). 4th ed. Washington, DC: American Psychiatric Association; Centers for Disease Control and Prevention. Autism information center: Center for Disease Control and Prevention;2007. Filipek PA, Accardo PJ, Baranek GT, et al. The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders. 1999;29: Hume K, Bellini S, Pratt C. The usage and perceived outcomes of early intervention and early childhood programs for young children with autism spectrum disorder. Topics in Early Childhood Special Education. 2006;25(4): Accessing Medical Literature in Your Community Typically, medical and scientific journals are very expensive. Luckily, Indiana has a number of resources for Indiana residents to access this literature at little to no charge. Professionals with hospital privileges: Often, a medical professional who has privileges at a local hospital will also have access to their library and electronic resources. To access these resources, you should contact the hospital s Medical Librarian, or IT Director if there is no Librarian. Professionals without hospital privileges: Those who have internet access can use two excellent resources that contain many resources at no cost: PubMed and INSPIRE. Those without internet access can visit their local public library to access these resources in addition to those provided by the library. For a small fee (usually, $11), you can request an item through the Loansome Doc Program at the Indiana University School of Medicine Library: or (317) Professionals without internet access: Often, if a library does not subscribe to a particular journal, they can request the item from another library via Interlibrary Loan (ILL). If the library can not afford to pay the cost for this service, you may be asked to pay a fee, usually a small one. Developed by HANDS in Autism 2008

9 Introduction ix PubMed - PubMed is the public portal available from the National Libary of Medicine (NLM) to access thousands of publications listed in a databased called Medline,as well as other resources. PubMed provides information about millions of articles, some of which are freely available. MEDLINE is the NLM s premier bibliographic database that contains references to journal articles in the life sciences with a concentration on biomedicine. A distinctive feature of MEDLINE is that the records are indexed with NLM s Medical Subject Headings (MeSH). The database contains citations from 1950 to the present, with some older material. PubMed also contains: In-process citations which provide a record for an article before it is indexed with MeSH and added to MEDLINE. Some OLDMEDLINE citations that have not yet been updated with current vocabulary and converted to MEDLINE status. Citations to articles that are out-of-scope (e.g., covering plate tectonics or astrophysics) from certain MEDLINE journals, primarily general science and general chemistry journals, for which the life sciences articles are indexed with MeSH for MEDLINE. Some life science journals that submit full text to PubMedCentral and may not yet have been recommended for inclusion in MEDLINE although they have undergone a review by NLM, and some physics journals that were part of a prototype PubMed in the early to mid-1990 s. Citations to author manuscripts of articles published by NIH-funded researchers. INSPIRE - INSPIRE is Indiana s Virtual Library. INSPIRE is a collection of academic databases and other information resources that can be accessed by Indiana residents using any computer equipped with an Internet Protocol (IP) address located in Indiana and a Web browser such as Firefox or Internet Explorer. INSPIRE includes following content: magazine and journal articles, websites, pamphlets, images, almanacs, library catalogs, and more. The databases containing these items include: Academic Search Premier - multidisciplinary, full-text database Biomedical Reference Collection - database containing 100+ full-text journals on sub-specialties such as clinical medicine, dentistry, and the healthcare system Health Business Fulltext - database containing 130+ full-text journals on healthcare administration Health Source - Nursing/Academic Edition - database containing 500+ scholarly full-text journals on various medical disciplines MEDLINE - a database containing authoritative medical information on medicine, nursing, dentistry, veterinary medicine, the health care system, pre-clinical sciences, and much more INSPIRE began in January 1998 as a partnership between the Indiana State Library and the Indiana Cooperative Library Services Authority (INCOLSA), along with a one-time grant from the Lilly Endowment Inc. which funded the SiteSearch software and its subsequent development. Additionally, LSTA (Library Services and Technology Act) funding is used for administration costs. Developed by HANDS in Autism 2008