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Autism Spectrum Disorder Children and Family Resource Guide Autism Spectrum Disorder Children and Family Resource Guide Candace T. Richardson Introduction to Children and Youth with Exceptionalities Professor Sara Hooks Aug. 9, 2015 Autism Spectrum Disorder Children and Family Resource Guide Autism Spectrum Disorder – Community Resource Guide Fact Sheet about Autism Spectrum Disorder A serious developmental disorder that impairs the ability to communicate and interact. Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art. Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age. Autism Speaks continues to fund research on effective methods for earlier diagnosis, as early intervention with proven behavioral therapies can improve outcomes. Symptoms Symptoms range from impaired social interaction and communication to repetitive behaviors to restricted interests and activities. People may experience: Behavioral: aggression, compulsive behavior, crying, excitability, hyperactivity, impulsivity, inappropriate social interaction, involuntary imitation of someone else's movements, irritability, Autism Spectrum Disorder Children and Family Resource Guide meaningless repetition of own words, nonsense word repetition, poor eye contact, repetitive movements, screaming, self-harm, or persistent repetition of words or actions Cognitive: intense interest in a limited number of things or problem paying attention Speech: abnormal tone of voice, speech impairment, speech loss, or stuttering Psychological: anxiety, depression, or unaware of others' emotions Developmental: learning disability or speech delay in a child Muscular: poor coordination, tic, or clumsiness Also common: constantly walking on tip toe, lack of empathy, or sensitivity to sound Sources: Mayo Clinic Related and North Carolina Organizations, Agencies, and Services North Carolina has many organizational agencies, organizations, and agencies to assist children and families living with autism. The list below provides information for Autism Spectrum Disorder: Organizations/Agencies National Autism Association The leading and most experienced on autism – related wandering prevention and response. National Autism Center The National Autism Center is May Institute’s Center for the Promotion of Evidencebased Practice. It is a nonprofit organization dedicated to disseminating evidence-based information about the treatment of autism spectrum disorder (ASD), promoting best practices, and offering comprehensive and reliable resources for families, practitioners, and communities. In 2009, the National Autism Center completed an unprecedented multi-year project — the National Standards Project — to establish a set of standards for effective, research-validated educational and behavioral interventions for children on the spectrum. These standards identify treatments that effectively target the core symptoms of ASD. Autism Spectrum Disorder Children and Family Resource Guide The resulting National Standards Report is the most comprehensive analysis available to date about treatments for children and adolescents with ASD. It is a single, authoritative source of guidance for parents, caregivers, educators, and service providers as they make informed treatment decisions. National Foundation for Autism Research Since our son was first diagnosed with autism in 1996, we've watched the incidence rate for autism jump from 1 in 2,500 children to a staggering 1 out of every 50 children in the US today. At the time, we kept asking ourselves, "Is anyone paying attention to these statistics?" But the truth is these aren't statistics. These are young children, and their families whose lives are altered by the effects of autism. And, whose opportunities and quality of life could be severely limited without the right programs, treatments and services. National Autism and Health Organizations and Parent Advocacy Groups The Autism Science Foundation The Autism Science Foundation's mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. Autism Society of America (ASA) Autism Spectrum Disorder Children and Family Resource Guide ASA seeks to improve the lives of all affected by autism by increasing public awareness about the day-to-day issues faced by people on the spectrum; advocating for appropriate services for individuals across the lifespan; and providing the latest information regarding treatment, education, research and advocacy. Autism Speaks Autism Speaks is dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. FRAXA Research Foundation FRAXA Research Foundation is a grass roots, nonprofit organization founded by Fragile X families, for Fragile X families. They fund a number of grants and fellowships for cutting edge research dedicated to developing treatments and finding a cure for Fragile X syndrome. National Center on Birth Defects and Developmental Disabilities (NCBDDD) The NCBDDD promotes the health of babies, children, and adults, and enhances the potential for full, productive living. The NCBDDD's work includes identifying the causes and prevention of birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities. National Fragile X Foundation The National Fragile X Foundation’s mission is to spread awareness of Fragile X syndrome and to provide education and help for affected families. Autism Spectrum Disorder Children and Family Resource Guide This foundation also funds important research aimed at finding a cure for Fragile X and associated disorders. They provide many resources for researchers and families alike. National Institutes of Health (NIH) Clinical Trials Website ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov provides information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals. Organization for Autism Research (OAR) OAR is led by parents and grandparents of children and adults on the autism spectrum, and seeks to use applied science to answer questions that parents, families, individuals with autism, teachers and caregivers confront daily. Phelan-McDermid Syndrome Foundation (PMSF) PMSF is a nonprofit organization whose mission is to support parents of children with 22q13 Deletion Syndrome/Phelan-McDermid Syndrome in any way possible. They also fund scientific research, host educational conferences, and aim to increase awareness of this rare genetic disorder. For more information on 22q13 Deletion Syndrome/Phelan-McDermid Syndrome, please visit www.shank3gene.org. Autism Society of North Carolina The Autism Society of North Carolina provides services to individuals and their families in the categories of advocacy, training and education, and services. Autism Spectrum Disorder Children and Family Resource Guide Advocacy involves resources for families which includes assisting with school issues, educate families through workshops, help individuals navigate the services systems, and local support groups. While training and education provides evidence-based best practices that empower selfadvocates, families, and professionals. ASNC is a direct care service provider, and a recipient of the highest level of accreditation by the Council on Quality Leadership for exemplary service provision. Individuals with ASD receive a variety of residential, recreational, vocational, and community-based services that are designed to meet their needs, interests, and strengths. North Carolina Autism Speaks One major component of North Carolina Autism Speaks is Autism Votes is the Advocacy initiative of Autism Speaks. Our focus is two-fold: 1) Maximizing support and funding for autism research, surveillance, awareness and services 2) Working in state capitals, Congress and the courts for autism insurance reform that maximizes coverage for evidence-based treatments including behavioral health treatments. Services Mariposa School for Children with Autism Mariposa provides intensive individualized instruction to children with autism, targeting a broad range of educational, behavioral, speech, social and motor dysfunctions, in a single integrated setting. The teaching methodology we use has been scientifically validated and is based on the principles of applied behavior analysis. Special attention is given to the factors that motivate each individual to learn. Through the practice of daily measurement of progress towards Autism Spectrum Disorder Children and Family Resource Guide individual goals, the educational team, consisting of the program coordinators, master instructors, instructor(s) and parents are kept abreast of the student’s progress. Data analysis allows the team to make dynamic changes in each student’s program in order to achieve maximum progress. Intensive one-on-one interaction occurs between each student and his or her instructor to provide continuous opportunities for the children to learn new skills throughout the day. Students may also spend scheduled time in group activities when appropriate. As part of the individualized plan for each student, opportunities are also created to teach students how to interact with peers in order to acquire, practice and generalize appropriate social behaviors. The goal for the students is to learn to communicate effectively, become increasingly independent, interact appropriately with others, and enjoy their learning experience. The Exceptional Children’s Assistance Center (ECAC) A full service Parent Training & Information Center serving families in North Carolina with more than 25 full and part-time staff and offices throughout NC. All services are provided at no charge to parents and families. The Association for Behavior Analysis International (ABA International) A nonprofit professional membership organization with the mission to develop, enhance, and support the growth and vitality of behavior analysis through research, and education. Families for Early Autism Treatment of North Carolina (FEAT of NC) FEAT of NC is a not-for-profit (501 (c) (3)) organization of parents and professionals founded to help families in North Carolina with children with the diagnosis of autism or Autism Spectrum Disorder Children and Family Resource Guide pervasive developmental disorder (PDD). FEAT of NC promotes the use of Applied Behavioral Analysis (ABA) as a proven, effective treatment for autism. The organization offers special programs focusing on issues concerning parents, autism professionals and persons specifically involved in ABA programs. iCan House Educates, supports and enhances the lives of those with social challenges and their families. They do so by teaching social and life skills using their own unique, interactive and engaging curriculum. The North Carolina Association for Behavior Analysis (NC-ABA) A non-profit state organization for persons who are interested in the study and practice of behavior analysis. NCABA is a chapter of the International Association for Behavior Analysis (ABA). TEACCH Provides clinical services such as diagnostic evaluations, parent training and parent support groups, social play and recreation groups, individual counseling, and supported employment. Autism Spectrum Disorder Children and Family Resource Guide Assistive Technology AppyAutism A web catalog to help find the most suitable apps for every person with autism! www.appyautism.com The Center for AAC and Autism The Center for AAC and Autism is dedicated to building awareness of the power of augmentative and alternative communication to change the lives of children with autism and other developmental disabilities who are challenged by limited spontaneous communication skills www.aacandautism.com DynaVox Mayer-Johnson: Augmentative and Alternative Communication (AAC) Devices and Services As the world's leading provider of AAC products and services, DynaVox offers complete solutions for individuals with speech and learning challenges. Our speech generative devices, often funded by Medicare, Medicaid or insurance, help those with conditions such as autism make meaningful connections with the world around them. www.dynavoxtech.com Enabling Devices Enabling Devices is a company dedicated to developing affordable learning and assistive devices to help people of all ages with disabling conditions. www.enablingdevices.com Autism Spectrum Disorder Children and Family Resource Guide GoTalk Pocket The GoTalk Pocket is lightweight, contoured, and so small it fits nicely in your hand or your pocket! Six message keys with five levels give the user plenty to talk about. Overlays slide in easily and are stored in a removable compartment on the back. The Pocket is rugged, attractive, easy to use, and has great sound quality. mayer-johnson.com LAMP: Language Acquisition through Motor Planning LAMP is a therapeutic approach based on neurological and motor learning principles. The goal is to give individuals who are nonverbal or have limited verbal abilities a method of independently and spontaneously expressing themselves in any setting. www.aacandautism.com/lamp MyVoice MyVoice is an alternative and augmentative communications aide (AAC) designed to help nonverbal, low cognitive people communicate their needs and desires. It's the digital big brother of a “picture board”, a communication method that has been shown to work extremely well many non-verbal children. www.discovermyvoice.com Parlerai Parelerai is the world's first Augmentative Collaboration (TM) service, using state-of-the-art Internet tools to enhance collaboration, bringing together the people and information needed to meet the challenges of everyday life for a child with special needs. www.parlerai.com Autism Spectrum Disorder Children and Family Resource Guide Pass It On Center The Pass It On Center is creating national and state resources to foster the appropriate reuse of AT so that people with disabilities can get the affordable AT they need in order to live, learn, work and play more independently. www.passitoncenter.org Proloquo2Go: AAC In Your Pocket Proloquo2Go is a new product from AssistiveWare that provides a full-featured communication solution for people who have difficulty speaking. It brings natural sounding text-to-speech voices, up-to-date symbols, powerful automatic conjugations, a default vocabulary of over 7000 items, full expandability and extreme ease of use to the iPhone and iPod touch. www.proloquo2go.com ProxTalker ProxTalker is a LoganTech brand of products that offers two unique communication solutions for individuals who are non verbal. The ProxTalker and ProxPAD use picture and tangible object tags to give a voice output. These picture tags are movable, and can be easily customized and recorded. They uniquely use RFID (Radio Frequency Identification) technology to enable independent verbal picture communication. Simply place any photo, symbols or object on a sound tag card and receive a voice output. logantech.com SmartEdPad: A Dedicated Therapy and Intervention Tool A dedicated therapy tablet for Special Education bundled with over 100s of Therapy apps approved by experienced Therapists! Autism Spectrum Disorder Children and Family Resource Guide SmartEdPad is one-stop solution for Children with Special Needs, Special Education professionals, Therapists, SLPs who are in Special Education Space. SmartEdPad leverages the power of a mobile device and transforms special education by taking it to a whole new level! SmartEdPad can be customized to each child or group and it can be used at school, in clinics, or at home. www.smartedpad.com Smartstones Touch A wearable device that lets you send messages with swipe, tap, or shake gestures. Smartstones Touch is the first wearable that lets you send messages with simple gestures. We're building a platform for nonverbal communication, designed for use by anyone and everyone. www.smartstones.co Switchamajig Switchamajig products enable an iPad to control things in the physical world. They sell the Switchamajig Controller as well as unique adapted toys such as remote controlled cars and boats. www.switchamajig.com TalkingTablet Communication Aids TalkingTablets help people with speech or learning difficulties to communicate. There are different TalkingTablets to meet different user needs offering text, symbols or photos as well as a choice of voices. For children and adults alike, TalkingTablets support people with a range of disabilities such as autism. www.talktablet.com Autism Spectrum Disorder Children and Family Resource Guide TapToTalk Portable, customizable, affordable, socially acceptable AAC for Nintendo, iPad, iPod Touch, iPhone, Android devices and the web. Give your child a voice! taptotalk.com Tech4Everyone A revolutionary computer station that enables people of all ages and abilities to effectively use the computer independently. www.tek4everyone.com Contact Information Autism Society of North Carolina, Inc. 505 Oberlin Road, Suite 230 Raleigh, NC 27605, USA +1 800-442-2762 (NC only) +1 919-743-0204 North Carolina Autism Speaks Call us! (888) 288-4762 En Español (888) 772-9050 Email us! The Exceptional Children’s Assistance Center (ECAC) ECAC'S MAIN OFFICE Autism Spectrum Disorder Children and Family Resource Guide Address: 907 Barra Row, Suites 102/103 Davidson, NC 28036 Phone: 704-892-1321 Fax: 704-892-5028 Parent Info Line: 800-962-6817 Email: [email protected] The Association of Behavior for Behavior Analysis International (ABA International) ABAI 550 W. Centre Avenue Portage, MI 49024 Phone: (269) 492 9310 Fax: (269) 492 9316 I Can House 336.723.0050. Our office hours are 10:30 – 6:00. Send a direct email to us at [email protected] 862 West Fourth Street, WS, 27101 The North Carolina Association for Behavior Analysis (NC-ABA) TEACCH TEACCH Autism Program Mailing Address: CB# 7180 UNC-Chapel Hill Chapel Hill, NC 27599 Physical Address: 100 Renee Lynne Court Carrboro, NC 27510 P: 919.966.2174 F: 919.966.4127 [email protected] Autism Spectrum Disorder Children and Family Resource Guide References ABC Autism Resource. Retrieved from http:// abcofnc.org/resources/autism-resources Autism Speaks. Retrieved from http://www.autismspeaks.org Autism Society of North Carolina. Retrieved from http://www.autismsociety-nc.org National Foundation for Autism Research. Retrieved from http://www.nfar.org National Autism Center. Retrieved from http://www.nationalautismcenter.org