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Read the latest issue of Prism from the Autism NOW Center: The National Autism Resource and Information Center.
Autism NOW: The National Autism Resource and Information Center

Just Imagine!

From the Director’s Desk

by Tonia Ferguson
Welcome to Prism, the Autism NOW Center’s e-newsletter!
 
Who would have imagined, months ago, that I would have this incredible opportunity to touch the lives of thousands with Autism Spectrum Disorders (ASD) and other developmental disabilities, their families, professionals, and other interested groups by just pressing one button.  As Director of the Autism NOW Center and the mother of someone with Down syndrome and Autism, I am thrilled to be a part of its mission to change the lives of many.  Though the goal of disseminating high-quality resources guided by the principles of inclusion, integration, independence, and self-determination may seem a tall order, the Autism NOW Center and its staff are ready for any challenges.  As parents, self-advocates, and researchers, we are determined to accomplish this goal!
 
Our reason for this determination: imagination!  Just imagine a mother who has just found out that her 10-year old daughter has been diagnosed with an ASD or the person who identifies with having a disability who cannot get the proper supports to live on their own.  What resources will they need to ensure their own or their loved one’s care, and where will they go to find them?
 
By creating this central point of entry for high quality resources – Autism NOW—many people in these situations will receive high-quality resources and information on autism and intellectual/developmental disabilities and on related topics, including early intervention and child care, independent living and self-determination, recreation, and much more!

At Autism NOW, we are working to create a world with information that is useful, accessible, evidence-based and personalized just for you! Imagine that!
 

From the Co-Director

by Paula Durbin-Westby
I am very excited to have the opportunity to work with the Autism NOW Center. The Center has a strong commitment to the principles of the Developmental Disabilities Act, and because of that commitment, self-advocates are being included in meaningful roles throughout Center activities. As a self-advocate and a person who believe strongly in self-determination, this was an important factor in my decision to become part of the Autism NOW Center staff. 
 
One of the most exciting things about working with the Center is the opportunity to network with many people on the autism spectrum and with other disabilities and to connect self-advocates with others who want to hear from our own experience and expertise. I have been working to locate people on the autism spectrum to present webinars (stay tuned!), to take leadership roles in regional summits, and to participate in the Center’s other activities and initiatives. I have always had an interest in introducing people with similar interests or concerns to each other, usually through Internet-based venues. At the Center, I am adding phone calls- lots of them!- to my repertoire. Because of my own communication difficulties, I am also focusing on making sure that events, conference calls, webinars, and other activities are accessible. (I get the side benefit of having it be really a lot more accessible for myself!) Some conference calls, particularly our Advisory Committee meetings, will be CART captioned. Other accommodations are being built in to our Regional Summits, such as sensory-friendly rooms and Internet-based access for people who need or prefer written communications. 
 
As a person on the autism spectrum and as Co-Director of the Center, I think it is critical for us to be involved at all levels. If you have ideas, comments, feedback, or just want to get in touch, please do not hesitate to contact us. We want the Autism NOW Center to reflect the ideals of inclusion and accessibility; so if something is not working for you, if you have concerns about access, or if you need assistance, please do not hesitate to let us know!



Research and Innovations

The DD Act's Self-Determination Principles

by Ann Cameron Caldwell
The role of The Arc’s Research and Innovations in the Autism NOW Center is one that provides vision, connections to others in the autism and disability communities, and helps to generate connections to resources and others that are interested in autism and other intellectual and developmental disability issues.  This column will regularly feature information on research findings, new technologies, and innovative approaches that are evidence based or considered best practices.  All information that we share – and in fact, all of the Autism NOW Center’s activities - are in alignment with the Self-Determination Principles that are outlined in the Developmental Disabilities Assistance and Bill of Rights Amendments of 2000  Act.  I thought that perhaps this first column may be a good time to revisit the DD Act; in it are many powerful statements.  Here a just a few.

“Congress finds that:
 
1) disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society...
 
(27) SELF-DETERMINATION ACTIVITIES. -The term ''self-determination activities'' means activities that result in individuals with developmental disabilities, with appropriate assistance, having-
(A) the ability and opportunity to communicate and make personal decisions;
(B) the ability and opportunity to communicate choices and exercise control over the type and intensity of services, supports, and other assistance the individuals receive;
(C) the authority to control resources to obtain needed services, supports, and other assistance;
(D) opportunities to participate in, and contribute to, their communities; and
(E) support, including financial support, to advocate for themselves and others, to develop leadership skills, through training in self-advocacy, to participate in coalitions, to educate policymakers, and to play a role in the development of public policies that affect individuals with developmental disabilities.”
(Full text of the DD Act is available at http://www.acf.hhs.gov/programs/add/ddact/DDA.html)
 
Some of these statements may be familiar or unexpected, depending on your own perspective of disability and experiences in your community, your culture, and your family. Even for me, a seasoned professional and a mother of a teenager with Down syndrome, these words feel like they are chiseled into white marble in some forever monument that I visit from time to time. They, and those who wrote them for me and my son and for all of us, fill me with a sense of awe. Yet, these words do not need to be distant; they can be alive and actionable in our lives for those of us connected to autism or other intellectual and developmental disabilities. Developing new understandings about what is possible and setting goals occurs over time and in a continuum that is defined by each of you. We encourage families and individuals that identify as having autism or other intellectual and developmental disabilities to read the DD Act to understand what the law states about people with developmental disabilities, to read about the recognition by our government that people with developmental disabilities are valued, and to read about the systems that provide different aspects of supports for people with developmental disabilities and their families. Our funder, the Administration of Developmental Disabilities (ADD), is an important part of ensuring that these programs are in place and is an excellent resource to families and individuals connected to disabilities across the nation. I hope you will take the time to read the DD Act, and to visit ADD’s website to read more about what is happening now.  
 
 

Regional Summits

The Autism NOW Center will hold five regional summits across the country this year.

These two-day events will include opportunities for networking and relationship-building between stakeholders, families, and people who identify as having an autism spectrum disorder or intellectual/developmental disability; for sharing information and resources related to the area of autism and intellectual and developmental disabilities; and for celebrating the local and regional autism and intellectual and developmental disability community. More...

Autism NOW Information and Referral Call Center

People with autism spectrum disorders (ASD) and other developmental disabilities, families, educators, and other professionals have many questions and concerns about ASD but may not know who to call, what to ask, or where to begin. The Autism NOW Center can guide you through the unknown by providing you with education, resources, and support.

Those requiring assistance can contact the Information and Referral Call Center toll free at 1.855.8AUTISM (1.855.828.8476) or locally at 202.600.3480. More...

Recent News

Technology helps children deal with autism in school
Chicago Daily Herald
From robots to telemedicine, 21st century technology is bringing the future into homes and schools across the suburbs — and at the same time leveling the playing field for students with special needs. Read more...

Freedom to choose leisure activities benefits people with autism
EurekAlert (press release)
Free time is not always a fun time for people with autism. Giving them the power to choose their own leisure activities during free time, however, can boost their enjoyment, as well as improve communication and social skills. Read more...

Helping autistic children with fear of flying
KYTX
Children with autism can have difficulty with things that many people take for granted, like flying. Now, a hospital in Philadelphia is pioneering a program to help autistic children better deal with flying. Read more...

Video game helps autistic children with social interaction
TG Daily - Lydia Leavitt
Psychology professor Carrie Pritchard is creating a computer game not just for fun, but to help teach autistic children social skills. Read more...

New Autism Research Priorities Unveiled In Federal Plan‎
Disability Scoop
Assistive communication, health issues and safety concerns for those with autism are just a few areas that will receive new attention in government-sponsored efforts to understand the developmental disorder under an updated plan released Monday. Read more...

Dear Lucy: A child's exploration of her autism
Washington Times
Parents of children with autism learn early that they have to be their child's greatest advocate. Read more...


Autism Fact

Factoid: CDC estimates that between about 1 in 80 and 1 in 240, with an average of 1 in 110, children in the United States have an ASD.

Calendar

Upcoming Webinars

Imagination Stage: Accessible and Inclusive Drama Opportunities and Approaches for People with ASD and other Developmental Disabilities

Tuesday, March 8 from 2:00 to 3:00 PM EST
Speaker: Ms. Diane Nutting, Director of Access and Inclusion, Imagination Stage

Please go to this web address to register.

Equine-Assisted Therapies and Recreation Opportunities for People with ASD and other Developmental Disabilities

Thursday, March 10 from 2:00 to 3:00 PM EST
Speaker: Ms. Cher Smith, NARHA   

Pease go to this web address to register.

Residential Camps and University-Summer Camp Partnerships: Mt. Hood Kiwanis

Tuesday, March 15 from 4:00 to 5:00 PM EST
Speakers: Kaleen Deatherage, Executive Director of Mt. Hood Kiwanis Camp; Professor Ann Fullerton, Department Chair and Professor in Portland State University’s Special Education Department; Kristy Lory, Mt. Hood Kiwanis Camp Program Director.

Please go to this web address to register.

Approaches to Recreation and Social Activities for Adults with Autism: Towson University’s Center for Adults with Autism Spectrum Disorders

Thursday, March 17 from 2:00 to 3:00 PM EST
Speaker: Dr. Lisa Crabtree, Director of the Center for Adults with Autism Spectrum Disorders, Towson University

Please go to this web address to register.

Resource Spotlight

On February 15, 2011, the Center began its first webinar series on transition issues. Below are two outstanding resources from the series:
 
The I’m Determined project, a project funded by the Virginia Department of Education, is a comprehensive website that focuses on providing instruction tools and models related to self-determined behavior for people that identify themselves as having a developmental disability, including autism.  These tools include lesson plans for teachers, brochures and PowerPoint presentations on self-determination in all aspects of the educational career, and toolkits for families to help them empower their student to take charge of their education. 
 
Maneuvering Through the Maze is a comprehensive document that provides resources for families and parents to assist their loved one who identifies as having an intellectual/developmental disability or autism throughout the person’s lifespan.  While this document does include specific resources for New Hampshire, where the guide originates, it also provides great general resources.  This guide includes credible tips and suggestions to parents and families regarding each stage of a person’s lifespan, including questions to ask agencies and organizations, as well as references to national organizations that can assist in service provision or advocacy.

To access other transition resources, this webinar series, or any Autism NOW webinar on-demand, please visit our webinars page or the website.

Partner Updates

ASAN self-advocates crafting self-advocacy tools on college, rural issues
 
Over the course of last month, Autistic adults and youth from the Autistic Self Advocacy Network (ASAN) have begun meeting to put together self-advocacy tools for dissemination through the Autism NOW Center. ASAN will be working over the course of the next year to put together multiple tools aimed at empowering Autistic adults and youth in a variety of different settings - the first two are focused on self-advocacy in college and in rural communities. Topics under discussion include independent living skills, social interactions, managing academic responsibilities and accessing services and accommodations. To receive updates about the work that ASAN is accomplishing, please visit their website
 
Brandeis’ Lurie Institute Hosting Autism Seminar
 
Brandies University’s Lurie Institute for Disability Policy will be hosting a lecture entitled, “Understanding the Increased Prevalence of Autism”, on Thursday, March 24, 2011. The speaker for this discussion is Dr. Peter Bearman, the Jonathan Cole Professor of the Social Sciences; Director of the Lazarsfeld Center for the Social Sciences at Columbia University; and Co-Director of the Health & Society Scholars Program at Columbia University. If you are in the Boston area, please join the Lurie Institute for this lecture from 12:30 to 1:45 PM in Schneider Room G3 at Brandeis University. To find out more about the Lurie Institute for Disability Policy, please visit their website.
Copyright © 2011 The Arc of the United States, Inc and Autism NOW, All rights reserved.
The Arc
The Autism NOW Center is a national initiative of
The Arc
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The Administration on Developmental Disabilities