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Parent Information Packet Parent information Resources and timeline planning packet for your family www.autismconsortium.org Autism Consortium Table of Contents Introduction ................................................................................................................................. 1 Understanding Autism and Treatments .................................................................................... 4 How Do I Begin the Special Education Process in my Public School? ............................... 15 Community Resources ............................................................................................................. 24 Healthcare .................................................................................................................................. 33 Act Relative to Insurance Coverage for Autism (ARICA) ...................................................... 38 Grants/Financial Assistance Programs .................................................................................. 41 Books ......................................................................................................................................... 45 Introduction Autism Consortium | 1 Introduction When a child is diagnosed with an autism spectrum disorder (ASD), parents often experience a range of emotions—from disbelief and confusion, to sadness and fear, to feeling overwhelmed and even feeling relieved that they finally know what’s going on. This is absolutely normal. All parents ask, “What do I do next?” Although there is no simple answer to that question, it might be helpful for you to know that there are many promising advances in the treatment of children with ASDs, and that there are many resources to help you. Although no one can predict the future for any child—with or without a diagnosis of autism—the future is much brighter for children diagnosed today than they were even a decade ago. Local and national sources of information and support for families with a child with an ASD are too numerous to count. Whatever else you might learn from the materials in this packet, always remember this: You are not alone. There are many professionals working hard to find the causes—and new and more effective treatments and resources—for families like yours. Understanding the diagnosis of ASD is an important first step for parents. The ASDs are described in detail in “What are PDDs and ASDs?” and include: . Autistic Disorder . Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) . Asperger Syndrome All ASDs are “pervasive developmental disorders,” meaning that several areas of development are affected. Although every child with an ASD is different, each has difficulties with communication and social interactions. They might also have difficulty with nonverbal communication, such as eye contact, facial expressions, and gestures (such as pointing). Play skills are often delayed and can be repetitive and unusual. Although some children are good-natured and easygoing, others might have difficult behaviors and little tolerance for change or frustration. Because every child’s individual You, the parent, know your child’s strengths, challenges, and needs better than anyone else. Introduction Autism Consortium | 2 strengths and challenges vary, each child will need a different combination of programs and services to match his or her individual learning and social profile. Doctors and other health-care professionals use different labels and language to describe children with ASDs. Your child might be said to have one Autism Resource of the diagnoses listed above – or might be Specialists described as “autistic,” having autistic features, or being “on the autism spectrum.” It is referred to as a spectrum because autism affects the skills Boston Medical Center and abilities of each child differently. DevelopmentalF i f and ti Behavioral Pediatrics After your child has been evaluated by a doctor, Shari King psychologist, or other professional or team of 617-414-3666 specialists, you will get an explanation of the [email protected] diagnosis and a written report with recommendations for programs and treatments Boston Children’s Hospital Developmental Medicine for home and school. You—the parent—know Center your child’s strengths, challenges, and needs Neal Goodman better than anyone else. You are the expert on 617-355-6802 your child, which makes you the most critical [email protected] person on your child’s treatment team. du Use the resources in this packet—and others that Floating Hospital for your health care team will tell you about. Ask Children at Tufts Medical questions. Seek advice and assistance. Contact Center Bernadette Murphy Bentley the autism support center in your area (listed below). This is an agency especially created to 617-636-1305 help you and your family with the many [email protected] questions you might have. The autism support Lurie Family Autism Center center staff will help you get the information you Mass General Hospital for need to make decisions about health care, Children education, social and leisure opportunities, Suzanne Bloomer community agencies, organizations and services, 781-860-1728 and funding sources. Many autism support center [email protected] personnel are parents of children with autism University Massachusetts themselves. They truly understand you. They Medical School have stood in your shoes and have learned Kelly Hurley valuable lessons that can save you time, effort, 774-442-2269 and worry. They want to help you and your child [email protected] succeed in whatever you set out to do Introduction Autism Consortium | 3 For information about resources in your area, contact the autism support center nearest you: Autism Alliance of Metrowest Family Autism Center TILL & Boston Families for In Natick, Serves Metrowest and In Westwood, Serves Norfolk Autism Middlesex West. County In Dedham, Serves Greater Boston 508-652-9900 781-762-4001, ext. 310 781-302-4835 www.autismalliance.org www.arcsouthnorfolk.org/family- www.tillinc.org/autism_training.ht autism-center.html ml Autism Resource Center In West Boylston, Serves Community Autism Worcester, North Central & South Resources Valley areas In Swansea, Serves Southeastern 508-835-4278 region, Cape Cod & Islands www.autismresourcescenteral.or 508-379-0371 g/index.html community-autism-resources.com Autism Support Center Community Resources for In Danvers, Serves Northeast People with Autism region In Easthampton, Serves Western 978-777-9135 region www.ne- 413-529-2428 arcautismsupportcenter.org communityresourcesforautism.or g Supported by a grant from the Nancy Lurie Marks Family Foundation Introduction Autism Consortium | 4 Understanding Autism and Treatments Understanding the diagnosis of Autism Spectrum Disorder (ASD) is an important first step for parents. Though symptoms and severity vary, ASD affects children's ability to communicate and interact with others. Children with ASD can also have difficulty with nonverbal communication, such as eye contact, facial expressions, and gestures (such as pointing). Children’s play skills are often delayed and can be repetitive and may include avoiding and/or seeking particular sensations. Although some children are good-natured and easygoing, others might have difficult behaviors and show frustration with changes in their routines. Sometimes these behaviors are related to difficulties understanding social interactions or challenges with learning certain skills. Because every child’s individual strengths and challenges vary, each child will need a different combination of programs and services to match his or her individual learning and social profile. Doctors and other health-care professionals use different labels and language to describe children with ASDs. Your child might be described as “autistic,” having autistic features, or being “on the autism spectrum.” It is referred to as a spectrum because autism affects the skills and abilities of each child differently. What is Autism Spectrum Disorder? ASD is a complex neurodevelopment disorder, characterized by a range of social communication and interaction impairments, and restricted, repetitive, and stereotyped patterns of behavior. It is a “spectrum” disorder because every individual with ASD has symptoms that differ in intensity, ranging from mild to quite severe. Symptoms of ASD are usually noticed in early childhood, but for some may not become obvious until the child is a bit older. All children with ASD, however, have some degree of difficulty in the following two areas: Understanding Autism and Treatments Autism Consortium | 5 Social Communication Skills: Such as sharing emotions, understanding Behaviors or interests: how people are feeling, Such as repeating words expressing empathy, or or actions, playing with having a conversation. things in an unusual way Both spoken and (spinning objects, lining unspoken up toys), or insisting on communication used for following rigid routines social interaction, such or schedules as pointing, gesturing, and making eye contact are also affected. For your child to be diagnosed with autism, he or she must meet the symptom criteria in the Diagnostic and Statistical Manual of Mental Disorders (DSM) published by the American Psychiatric Association. This manual is used by mental health providers to diagnose behavioral conditions and by insurance companies to reimburse for treatment. Prior to the May 2013 publication of the DSM-5 diagnostic manual, there were recognized
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