Welcome to the New Jersey State Library’s Virtual Autism Resource Fair. Due to the current health crisis, the library was forced to cancel it’s in-person Autism Resource Fair, but since April is Autism Awareness Month and families affected by Autism are facing unique challenges with many of the state’s directives to close schools and most businesses, it is important as ever to spread the word about the organizations and resources available to members of the Autism community. Please find below information about different Autism-related organizations throughout the state to learn more about Autism Spectrum Disorder, current research on Autism, resources for families including education, health-care, therapy and more! Please share this with your family, friends, schools, libraries and any other person or group that can benefit from this information.
Founded in 1965, Autism New Jersey has worked tirelessly to improve the lives of those affected by autism, including children, parents, and caregivers. Autism New Jersey is one of the leading autism groups in the state and provides lifelong individualized services with skill and compassion. Autism New Jersey serves the autism community by focusing on four pillars — Awareness, Information Services, Education & Training, and Public Policy. Working with families, schools, clinicians, community organizations, and researchers, Autism New Jersey seeks to equip families and caregivers with the most up-to-date information and best practices for diagnosis, treatment, and support.
Autism New Jersey has a wealth of information on its website. An autism diagnosis often brings many questions, including the best treatment options and where to seek medical, financial, legal, educational, and emotional support. Autism New Jersey has a wonderful Helpline (800.4.AUTISM) that talks families and professionals through every aspect of their lives, and a Referral Service that offers a wide variety of healthcare and service providers. Autism New Jersey also hosts workshops and produces informative webinars that have been especially useful during the current COVID-19 health crisis.
Autism New Jersey also tackled the COVID-19 crisis by creating a detailed resource page, which includes information about different governmental agencies, support for individuals, families, and self-advocates, and healthcare resources and options, including telemedicine and teletherapy.
Autism New Jersey is at the forefront of advocacy for the autism community. Learn more about their Public Policy initiatives and ways you can Get Involved, through volunteering, donating, or becoming an Autism Ambassador.
Autism Speaks, founded in 2005 by Bob and Suzanne Wright, grandparents of a child with autism, is dedicated to promoting solutions for the needs of people with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism; and advancing research into causes and better interventions for autism spectrum disorder and related conditions. The organization builds upon the legacy of three other organizations that merged with Autism Speaks; Autism Coalition for Research and Education (ACRE), the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN). As a national organization, Autism Speaks is advancing research into causes and better treatments for autism spectrum disorders and related conditions both through direct funding and collaboration.
Autism Speaks provides a wealth of information and resources for people with autism and their families. For families affected by autism, Autism Speaks has detailed pages on diagnosis, treatment, and a Resource Guide which can be narrowed down by state, life stage, and level of support. Additionally, Autism Speaks has a Autism Response Team that can help parents, clinicians, and researchers in a wide variety of topics, including where to get a diagnosis, schools and special education, advocacy and support, adult services – including post-secondary programs and employment, and inclusion and community activities.
Autism Speaks also promotes programming and research related to autism by providing funding through grants. So far, Autism Speaks has awarded over $2,000,000 to 55 institutions, just in New Jersey. This money went toward special swim lessons and water education classes, summer camps for children with autism, and research studies at academic institutions, including Rutgers and Princeton. To learn more about how you can support the Autism Speaks mission, visit https://www.autismspeaks.org/get-involved or email the New Jersey Autism Speaks office directly at email@example.com.
Autism Speaks also has a specific page dedicated to the COVID-19 health crisis. Whether you are a family with school-aged children, looking for resources and support for an adult with autism, or an educator or health professional, Autism Speaks is there for you.
The New Jersey Autism Center of Excellence is a collaborate group of innovative scientists, clinicians, and service providers who strive to improve the quality of life of families touched by Autism in the State of New Jersey. According to it’s mission statement, NJ ACE is committed “to improve autism research and clinical care throughout the state of New Jersey, revamp autism training initiatives across the state, educate society about autism unmet needs, and to make NJ a national leader in these endeavors.” NJ ACE was created in 2018 through a grant from the New Jersey Governor’s Council for Medical Research and Treatment of Autism to Rutgers, the State University of New Jersey in partnership with Specialized Children’s Hospital.
NJ ACE is focused on collecting research data, whether from new studies or previous ones done throughout the country, to better identify and explain the underlying causes of Autism, how it develops, and best practices for treating both symptoms and the underlying disease. Also, please check out the Research tab on their website for the latest information about anything related to Autism research.
If you are looking for more help, NJ ACE lists nearly 50 organizations that provide a wide variety of services for the Autism community. NJ ACE has a wonderful webinar series related to adults with Autism, a topic that is often overlooked and understudied, leaving many members of the Autism community with little help or support as they move on from school. Additionally, NJ ACE has a YouTube channel with a wide variety of videos, including one about Zoning your Home, specifically designed for those Autism community members adjusting to the new realities of home life during the COVID-19 health crisis. You can also download a copy of their Home Routine Schedule and Guide. Please check out their COVID-19 Resources Guide for more information about strategies and helpful sites.
New Jersey is one of the few states that has a statewide registry specifically dedicated to Autism. The New Jersey Autism Registry was created to better understand Autism Spectrum Disorder in New Jersey and link families to available services and supports. State law requires licensed healthcare providers to register any child diagnosed with Autism to the Autism Registry as long as they are a resident of New Jersey, under 22 years old, and diagnosed with ASD, Autistic Disorder, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), or Asperger’s Disorder/Syndrome. You can choose to be in the registry anonymously, but then your family will not be able to be linked to special child health case management services. These county-based, coordinated service providers have many years of experience and knowledge of the local, county, and statewide resources available to families of children with special health care needs.
Once your child is registered, a letter and informational pamphlets are sent to you notifying you that your child has been registered. To keep confidentiality, the letter does not contain your child’s diagnosis. In addition to a letter sent to you, information about your child is sent to the special child health case management unit within your county of residence. These case managers are available to serve you and your family by providing you with coordinated, family-centered resources. This service is free to you and is available to your child from birth through the age of 21. All personal information in Registry is kept in a tightly secured location and all information produced from Autism Registry data, such as reports, data tables and so forth are done in aggregate, with no individuals identified whatsoever.
Parents can facilitate the registration process by informing their health care provider (such as their pediatrician, neurologist, or psychiatrist or other New Jersey licensed provider that cares for the child) of the law and by telling them that they want their child registered. They can also assist with completing and sharing the autism registration form with their child’s health care provider. Early identification of children with autism and early intervention of the behaviors and symptoms associated with autism improves later outcomes. The Autism Registry helps with this by referring families to special child health case management services, who perform coordinated care and inform families of available resources, or to early intervention if the child is under 3 years of age.
Parents of Autistic Children (POAC) Autism Services is a non-profit that continuously makes a significant impact in New Jersey’s fight against Autism. Each year, POAC sponsors hundreds of events for the Autism community, ranging from trainings for families, educators libraries, and police, fundraisers including their Autism Walks throughout the state, and recreational activities for families affected by Autism, including swim lessons and BBQs. Additionally, POAC aims to address, support, and promote legislative issues that affect those with autism and their families, including sitting on the NJ Governor’s Council on Autism.
POAC has compiled tons of resources for families and the greater community available as Fact Sheets. These sheets range from information on Individualized Education Plans (IEPs), online resources for parents and teachers, and governmental programs and agencies critical to support members of the Autism community. Additionally, POAC has compiled a list of digital and print publications, which you can purchase online, used and referenced in their trainings as well as useful for parents, caregivers, teachers, and individuals with Autism. POAC relies on the help of dedicated and passionate volunteers for all it’s programming. If you would like to help POAC in it’s mission to support those affected by Autism, you can visit their Ways to Help page, to learn more about becoming a volunteer, donating, or getting your school or workplace involved in the Autism conversation.
Currently, to help those affected by Autism in the current COVID-19 crisis, POAC is offering daily live events for free. These include Story Time with Gary (founder of POAC), Yoga and Zumba designed specifically for individuals and families, music sessions, and webinars on a wide-range of topics. Additionally, POAC has also compiled a list of forms that families with Autism will find useful as they try to navigate all stages of Autism while staying in the safety of their home.
The New Jersey State Library Talking Book & Braille Center (TBBC) provides an extensive collection of audiobooks to anyone in NJ who has a print disability and cannot read traditional standard printed material. These audiobooks are produced by the National Library Service for the Blind and Print Disabled, a federal program that ensures “that all may read“. A person with autism qualifies for TBBC services if they have a print disability: low vision, blindness, a physical disability where they cannot hold the book or turn the pages, or a reading disability.
While autism, itself, is not an official qualifying reason to receive services from TBBC, many times there are accompanying reasons a person with autism may qualify. If there is a sensitivity to touch that would prohibit a person from being able to hold a book or turn the pages, that person would qualify with a physical disability. “Low vision” simply means that even with glasses, a person cannot read the print in the newspaper. And, a person may also qualify if there is a reading disability in addition to the autism.
The application for TBBC requires that a “Certifying Authority” must certify that the person qualifies for services. No additional documentation is needed for the application to be approved. The complete list of those who can sign are listed on the application; for those who are blind, low vision, or have a physical disability, the person signing includes librarians, nurses, doctors, social workers, and so on. For a person with a reading disability, a doctor (MD or DO) must sign the application.
Typically, TBBC mails all material (audiobooks and the machine to listen to the books) at no cost to the individual. At the moment, we are unable to mail items back and forth. That doesn’t mean you cannot get books! All of TBBC’s audiobooks can be downloaded from a service called BARD (Braille and Audio Reading Download) and then listened to on most smartphones and tablets, including the iPad and Kindle Fire using the BARD Mobile App. Our staff at TBBC are available by phone or email, and can walk you through the process of getting these books.
To find out more about TBBC, our audiobooks, how to get them, and how to use BARD, please visit our website at https://www.njstatelib.org/talking-book-braille-center/ or call us at (800) 792-8322 ext 861 or email us at firstname.lastname@example.org