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Nebraska Autism Parent Booklet (2003)

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Nebraska Autism Parent Booklet (2003) NEBRASKA AUTISM PARENT BOOKLET (2003) This booklet was funded by a grant from the Nebraska Developmental Disabilities Planning Council, Nebraska Department of Health and Human Services. 1 Acknowledgments This document was put together by Nebraska parents as well as members from Unlocking Autism of Nebraska, the Autism Society of Nebraska, LIFE of the Midwest (Formerly FEAT of Nebraska), Parents Autism Network of Nebraska (PAN), the Asperger’s Support Group, to include: Connie Shockley Sharon Layeski Carol Salber Jennifer Conzemius Cynthia Archwamety Ginny Rush Lori Podany Angela Keene Roxanne Vipond Carolyn May Lorena Pulgarin Najiba Niazi Susan Lien Chrissy McNair Deb Weston Drew Lepinski A special thank you to the following individuals/organizations: Nebraska Autism Spectrum Disorders (ASD) Network Laura L. Maddox; State Autism Coordinator Bridget Cannon-Hale; Metro Regional Coordinator Parent Training and Information of Nebraska Mary Dale Christensen; Training and Information Specialist Colleen Peterson; Training and Information Specialist Nebraska Department of Education Special Populations Office Rose Dymacek; Consultant 2 Nebraska Autism Parent Booklet Outline Chapter/Topic Pages 1. What is Autism? 5 - 19 * What is Autism? * Myths About Autism * Autism Fact Sheet * CHAT * Indicators of Sensory Processing Problems 2. Diagnosing Autism 20 - 30 * Diagnosing Autism * Educational Vs. Medical Diagnosis * Educational Label for Autism from Rule 51 * DSMV-IV, Pervasive Developmental Disorders 3. Educational Therapies 31 - 40 * How to Determine if a Treatment Really Helped * Research on Autism Therapies * Applied Behavior Analysis/ABA * Verbal Behavior/AVB * Floortime/DIR/Greenspan * TEACCH * Option Institute/Son-Rise Program * Pivotal Response Training * Relationship Development Intervention/RDI * Social Stories * Power Cards 4. Medical Therapies 41 - 53 * Nutritional Therapies * Anti-yeast Therapy * Secretin * Chelation * Neuro-Immune Dysfunction Syndromes/NIDS * Defeat Autism Now (DAN) Protocol * Medications * IVIG Therapy * Transfer Factor * Sulfate Deficiency/Epsom Salt Baths * Vaccinations * EEG Biofeedback * Hyperbaric Oxygen Therapy 3 5. Additional Therapies 54 - 63 * Dietary Interventions * Occupational Therapy * Sensory Integration * Speech Therapy * Physical Therapy * Listening Therapies * Fast ForWord * Earobics * Vision Therapies * Animal Therapies 6. IEPs/IFSPs/State & Federal Law 64 - 84 * Special Education Law * Special Education and the IEP in Nebraska * A Parent’s Guide in Nebraska’s Rule 51 * Ten Ways to Take Charge of Your Child’s IEP Meeting or Family Support Plan * The IEP: What do we do if it isn’t working? 7. Medicaid/SSI/Respite 85 - 98 * SSI - Supplemental Security Income * Medicaid * Kids Connection * Disabled Children’s Program (DCP) * Disabled Persons and Family Support (DPFS) Program * Early Intervention Medicaid Home and Community-Based Waiver * Medically Handicapped Children’s Program (MHCP) * Transportation for Children with Disabilities * Nebraska Respite Network * Respite Subsidy Program Across the Lifespan * Other Respite programs 8. Nebraska State Resources 99 - 117 * State Agencies and Organizations * Disability-Specific Organizations * Organizations Especially for Parents * Other Disability Organizations * Additional Nebraska Resources (broken down by regions) 9. National Organizations 118 - 127 * Federal or Federally Funded Agencies * National Organizations 10. Websites 128 - 146 11. Books Reviews 147 - 162 12. How To Keep Sane 163 - 172 13. Special Education Abbreviations & Definitions 173 - 183 4 CHAPTER 1 WHAT IS AUTISM? Disclaimer The following is an introduction to autism, some of the many treatment approaches, and local and national resources available for individuals with autism. This is not an exhaustive list; its purpose is to provide information on some of the more common aspects of autism and does not reflect an endorsement of any one particular treatment or resource. There is no ‘one treatment fits all’ therapy just as there is no cure for autism. There are treatment and education approaches that may reduce some of the challenges associated with the disability. Treatment approaches will vary with each child as their individual strengths and needs are taken into consideration. It is important to research treatments and resources/providers thoroughly before implementation. The information and resources contained in the Nebraska Autism Parent Booklet are for educational and informational purposes only. Information provided through this Booklet should not be used as a substitute for care by a qualified Developmental Pediatrician, Pediatric Neurologist, Behavioral Psychologist, Behavior Analyst, Speech and Language Pathologist, Attorney, or other appropriate professional. 5 WHAT IS AUTISM? Autism is a life-long developmental disability that typically (see Aspergers) appears during the first three years of life. The result of a neurological disorder that affects the brain, it is four times more prevalent in boys than in girls and knows no racial, ethnic, or social boundaries. Autism affects communication, social skills, pattern and range of interests, and sensory responsiveness. Autism is a spectrum disorder meaning the symptoms and characteristics of autism can be present themselves in a wide variety of combinations, from mild to severe. Although autism is defined by a certain set of behaviors, children and adults with autism can exhibit any combination of the behaviors in any degree of severity. Autism (or Autism Spectrum Disorders - ASD) falls under the category of Pervasive Developmental Disorder and includes the following: * Autistic Disorder impairments in social interaction, communication, and imaginative play prior to age 3 years. Stereotyped behaviors, interests and activities. * Asperger’s Disorder characterized by impairments in social interactions and the presence of restricted interests and activities, with no clinically significant general delay in language, and testing in the range of average to above average intelligence. * Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) (commonly referred to as atypical autism) a diagnosis of PDD-NOS may be made when a child does not meet the criteria for a specific diagnosis, but there is a severe and pervasive impairment in specified behaviors. * Rett’s Disorder a progressive disorder. Period of normal development and then loss of previously acquired skills, loss of purposeful use of the hands replaced with repetitive hand movements beginning at the age of 1-4 years. * Childhood Disintegrative Disorder characterized by normal development for at least the first two years, significant loss of previously acquired skills. Prevalence of Autism Autism is the third most common developmental disability, more common than Down Syndrome. According to the Autism Society of America (www.autism-society.org, 2003), it is estimated that between 1 per 500 to 1 per 250 individuals are affected by autism; around 1.5 million in America that are believed to have some form of autism. 6 The Centers for Disease Control and Prevention (www.cdc.gov) indicates studies internationally show as many as 6 in every 1,000 children are on the autism spectrum. Studies conducted by the CDC in Atlanta, Georgia and Brick Township, New Jersey show a prevalence of 3.4 in 1,000 and 6.7 in 1,000 respectively. A larger study is currently underway with several states and the report findings should be available in late 2003. Characteristics As indicated above, autism is a spectrum disorder and no two children with autism will have the exact same symptoms. Below is a partial list of the characteristics of autism. 1. Social Skills * may have difficulty with nonverbal behavior (eye contact, facial expression) * may have problems making friends * may have difficulty understanding another person’s point of view * may have difficulty understanding other peoples emotions or their own * may not interact with others in a typical manner or may not be interested in people at all * may prefer to be alone * may be interested in people but not know how to relate to them. 2. Communication * may be non-verbal or have a delay in talking * may repeat (echo) words and phrases over and over (echolalia, instant and delayed) * may have difficulties with ‘you’ and ‘I’ * may have a large vocabulary, formal speech and speak like a ‘little professor’ * may have problems with conversations * may have difficulty in turn taking * may speak too loudly or have a flat or unusual tone of voice * may have difficulty with metaphors and take everything literally * may have difficulty understanding abstract ideas 3. Play/Interests/Activities * may have lack of spontaneous or imaginative play * may not imitate others’ actions * may not initiate pretend games * may have limited interests or activities * may do the same things repeatedly * may have problems breaking with routines * may have an unusual fascination in a subject or activity 4. Sensory * may have unusual responses to sound * may have unusual responses to smells * may have unusual responses to pain (may exhibit no reaction to pain) * may have unusual responses to touch * may not like to be held or cuddled or might cuddle only when they want to. * may engage in self-injury, such as head-banging or biting 7 5. Other * may have no sense of danger * may have problems generalizing information from one setting to another * may have poor sleeping patterns * may have poor eating habits * may have poor coordination (may have difficulty
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