Download Autism Spectrum Disorder Children and Family Resource

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