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Parent Guide to Autism Spectrum Disorders

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Parent Guide to Autism Spectrum Disorders hio’s Parent Guide to Autism Spectrum Disorders Ohio Center for Autism and Low Incidence Department hio of Education Ohio’s Parent Guide to Autism Spectrum Disorders 470 Glenmont Avenue Columbus, Ohio 43214 www.ocali.org ©2009 Ohio Center for Autism and Low Incidence (OCALI) OCALI is a project of the Educational Service Center of Central Ohio Funded in part by the Ohio Department of Education All listed websites are current as of date of publication, December 31, 2009 Acknowledgments This publication is possible because of the combined efforts of the following members of the Ohio Center for Autism and Low Incidence (OCALI) Parent Resource Manual Task Force, who gave so freely of their time and expertise: Jennifer Brown Pat Cloppert Chris Filler Cynthia Goedde Judy Marks Rory McClean Colleen Miller Ginger O’Connor Donna Ownes Angelia Parsons Mary Beth Paul Rebecca Pescosolido Marla Root Andie Ryley Julie Short Scott Short Pattie Stechschulte Linell Weinberg Barbara Yavorcik The task force extends its thanks to the Autism Society of America-Autism Society of Ohio (ASO), the Greater Cleveland Chapter of the Autism Society of America and the Northwest Ohio Chapter of the Autism Society of America for sharing their resources with us in support of this project. We also thank OCALI staff members for their support in the completion of this manual. We do our best work in collaboration with others. Our thanks as well to the Ohio Department of Educa- tion, Office of Exceptional Children, for their support in this endeavor. Finally, we extend our thanks to the Ohio Legislature for recognizing the need and establishing the Ohio Autism Task Force. This manual is a result of their recommendations. This guide was developed and written by parents of individuals with autism spectrum disorders. The examples provided are from their experiences. The information included in this manual is a result of their answer to the question: When your child was first diagnosed, what information did you need most? DISCLAIMER: The Ohio Center for Autism and Low Incidence (OCALI) is a project of the Educational Service Center of Central Ohio (ESCCO) and is supported, in part, with funding from the Ohio Department of Education, Office for Exceptional Children (ODE-OEC). The content of this manual does not necessarily reflect the position or policy of the ODE-OEC, ESCCO or OCALI, nor should the content of the manual be considered an endorsement for the use of any particular intervention. All websites listed are current as of December 31, 2009. Table of Contents I Suspect My Child Has Autism.........................................................................x • A four-step guide for Ohio parents on what to do next Chapter 1: What Is an Autism Spectrum Disorder? ..................... 1 • A definition of ASD with a list of characteristics and common warning signs in young children Chapter 2: Screening and Diagnosis .......................................................... 9 • An explanation of the difference between the medical diagnosis of ASD and the edu- cational identification of autism Chapter 3: Living with ASD .............................................................................. 25 • A review of common issues of daily life with practical tips for families Chapter 4: Interventions ..................................................................................... 71 • A review of therapies, program models, biomedical interventions, and individual strategies Chapter 5: Accessing Educational Services ....................................... 105 • A guide to obtaining appropriate educational services Chapter 6: Social Service Programs ........................................................ 121 • A list of Ohio social service agencies and a review of the support they can provide Chapter 7: Advocacy and Disability Awareness ........................... 143 • A guide to help families become advocates who will influence services and supports for family members with ASD and influence public policy related to ASD • viii • Chapter 8: Future Planning ............................................................................ 153 • A review of issues to consider as individuals with ASD grow into adulthood References and Resources ................................................................................. 169 • A list of books, websites, and organizations that provide additional help and informa- tion Appendix A: Defnition of Pervasive Developmental Disorders .................................................................................. 191 • Full definition of pervasive developmental disorders according to the Diagnostic and Statistical Manual of Mental Disorders (IV-TR) Appendix B: Useful Forms ............................................................................... 197 • Developmental Milestones, Family Health History, Emergency Medical, Emergency Response Information for Individuals with a Disability, Parent Record-Keeping Worksheet, Child/Student Profile, Home-School Communication, IEPs, MFEs,Diag - nostic Assessments Appendix C: Navigating Rough Waters ............................................... 243 • Steps parents can take when they disagree with educators on their child’s program Appendix D: Letter to Request a Multi-Factored Evaluation ......................................................................................................................... 249 Appendix E: Process for Determining Eligibility for Special Education Services ....................................................................... 251 Index .....................................................................................................................................255 • ix • I Suspect My Child Has Autism: A Four-Step Guide for Ohio Parents on What to Do Next When parents have concerns about their child’s development, there is almost always a valid reason for their concerns. Research supports that parents are accurate reporters of early signs of developmental delays or autism. A short encounter or interaction between your child and a physician may not be enough time for the physician to accurately observe the collection of symptoms that you see day in and day out. Parents need to be prepared with a list of specifc observations, including times, places, and frequency, to paint an accurate picture of their worries. In the past, 80 percent of physicians told parents to “wait and see”.1 Early intervention works. Act now! Step 1 Asking for an Evaluation There are three types of evaluations. 1) Medical/Clinical Evaluations • Talk to your child’s doctor; be specific about your concerns. • Ask your doctor to evaluate your child for autism or make a referral to a professional who can (developmental psychologist, developmental pediatrician, pediatric neurologist). It’s okay to ask that action be taken immediately. • To pay for the evaluation, check these sources: 1. Private insurance: Check your whole insurance plan to see if it pays for a medical/ clinical evaluation for developmental disabilities or autism. 2. Bureau for Children with Medical Handicaps (BCMH): BCMH is a part of the Ohio Department of Health that provides funding for evaluations through their approved providers. To find out what is covered, call the state office toll free at (800) 755-4769 or visit http://www.odh.ohio.gov and search for BCMH. Early medical signs: Websites to check your child’s development: • Problems with communication • www.concernedaboutdevelopment.org • Resistant to change • www.firstsigns.org • Difficulty playing with peers • www.cdc.gov (Learn the Signs, Act Early) • Little or no eye contact • Unusual reaction to noises, lights, touch, smell, and taste • Handflapping, rocking, walking on toes • Frequent or extreme tantrums (meltdowns) 3. Medicaid: Check with your county’s Jobs and Family Services (JFS) agency to see if your child is eligible for funding for an evaluation through a Medicaid provider. Find your county’s JFS by calling toll free (877) 852-0010 or visit http://jfs.ohio.gov/county/cntydir.stm. 1Autism Society. Retrieved March 1, 2009. • x • 4. County Board of Developmental Disability Services (CBDDS): Some county boards pay for a medical/clinical evaluation. Check with your county board to see if they will provide funding for a medical/clinical evaluation. Find your county board contact information toll free at (877) 464-7633 or visit http://dodd.ohio.gov/contacts/ countyboards1.htm. 5. County Board of Mental Health: Some mental health boards subsidize the cost of an evaluation. Check with your County Board of Mental Health for a referral for a medical/ clinical evaluation. Contact them toll free (877) 275-6364 or visit http://mentalhealth.ohio. gov. 2) Education Evaluations • If your child is approaching age 3 or older and you would like services for him in school, you need to get an educational evaluation. • A medical/clinical evaluation does not necessarily qualify a child for special educational services. For this, an educational evaluation is needed. 1. Contact your local school district special education office in writing to request an initial Multi-Factored Evaluation (MFE). Districts are required by law to respond within 30 days. 2. You will be asked to attend a meeting to plan the evaluation if the district agrees to evaluate your child. Parents should request assessments in all of the following areas: communication, social, motor, sensory, emotional, behavioral, functional and academic performance. If your request for an evaluation is
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