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The Arc Reacts to New Federal Data Showing Autism on the Rise

Washington, DC – The prevalence of Autism Spectrum Disorders (ASDs) is rising, according to new data released today by the Centers for Disease Control and Prevention (CDC). The CDC is reporting that one in 88 children has autism or a related disorder.

“The data signal an impending crisis in America’s safety net system for people with autism and related disorders. We may be facing a ‘perfect storm’ as the rapid rise in the prevalence of autism comes at the very same time Congress is proposing to cut hundreds of billions of dollars from the Medicaid program – the single largest funding source of services and support for autism – while slashing funding for public health programs,” said Peter V. Berns, CEO of The Arc.

ASDs are a group of developmental disabilities that are often diagnosed in early childhood and can cause significant social, communication, and behavioral challenges over a lifetime. There are three subtypes of ASDs: autistic disorder, Asperger disorder, and pervasive developmental disorder not otherwise specified (PDD-NOS). Chapters of The Arc serve people with autism and their families across the country, supporting their efforts to live and succeed in the community.

According to the CDC, medical costs for children with ASDs are estimated to be six times higher than for children without ASDs. In addition to medical costs, intensive behavioral interventions for children with ASDs can cost $40,000 to $60,000 per child per year.

Early identification and intervention can have a significant impact on a child’s ability to learn new skills. CDC’s “Learn the Signs. Act Early.” health education campaign promotes awareness among parents, health professionals, and child care providers about healthy developmental milestones, the importance of tracking each child’s development, and acting early if there are concerns. CDC offers free online resources, including checklists of developmental milestones, at www.cdc.gov/ActEarly.

“Research and surveillance must continue to be priorities by entities such as the CDC, with dollars and expertise dedicated to trying to figure out not only the causes of, but also life solutions for autism. We fully support the CDC’s position that early identification and intervention efforts are critical to ensuring the best opportunities for people with autism to achieve independence,” said Berns.

Autism NOW: The National Autism Resource and Information Center, a federally funded project of The Arc, is another resource for people with ASDs and their families. The online center aims to help people searching the web separate fact from fiction when it comes to autism. Learn more at www.autismnow.org.

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Autism NOW Center Launches Local Agencies Directory and Mobile Site

Check out the announcement over on the Autism NOW Center website about new features on its site:

“Led by The Arc and funded by the Administration on Developmental Disabilities, 2011 was a busy year for the Autism NOW Center. With five regional summits, dozens of webinars, and the creation of a top-notch informational website with input from partners in the disability field, we went into 2012 with exciting ideas to expand upon that important work. While www.autismnow.org is becoming a go-to resource for families, individuals with autism, and experts in the field, we’re still working hard on adding new features and content!

We just rolled out two exciting new features on the site recently – a mobile version, allowing users on mobile devices like smart phones and tablets to see an optimized version of the site, and a local agencies directory in the form of a map. This mobile version lets users get to content faster on the go, and creates better accessibility overall for the site. The local agencies directory provides an easy-to-use way to find agencies in your state that can help with services, support and resources for living with autism and other developmental disabilities.”

The Autism NOW Center staff, a national initiative of The Arc, has a busy year planned. Other planned features include commenting on blog articles, a message board, an enhanced community calendar and new video content. Keep an eye on autismnow.org for the latest announcements and resources!

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Welcoming Amy Goodman to The Arc

Amy GoodmanBy Amy Goodman, Co-Director, The Autism NOW Center

Hello, my name is Amy Goodman and I joined the Autism NOW team in November as the new co-director. I live in Harper’s Ferry, West Virginia, and I am on the Autism Spectrum. I learned about my disability at a later stage in life, actually at the age of 33. My brother’s friend suggested that I try to get diagnosed. My brother claims it all started with the Grateful Dead. If it weren’t for Dead Net Central, he wouldn’t have ever met this friend. I finally found what I was looking for, answers to my questions and a diagnosis.

I was relieved to finally have a diagnosis and a name for some of the issues I was having. With that diagnosis, I was finally able to put my life in perspective and focus on who I am. It was because of this new found information that I went to graduate school and got my degree in Special Education with a focus on Autism at Marshall University in Huntington, West Virginia. I was accepted into a separate program at the Autism Training Center (ATC), at Marshall for students with Asperger’s syndrome/High Functioning Autism (HFA), which gave me academic support, individual support, and social skills I needed to live independently in my own apartment. I was the first graduate student, the first female, and the first individual to graduate from the ATC.

After graduate school, I worked as a Service Coordinator for Birth to Three. I had that job for about four years and I decided I needed to change my focus and get a job that applied my talents in a different way and helped to support me as an individual. I applied and looked for a job for more than a year and a half, and then I finally tried something I thought I would never do, networking. It paid off and I got a job at The Arc as co-director of Autism NOW. I have been at this job for about two and half months and I love it and everything about it.

The job at the Arc has given me my independence in many ways. I now am self-sufficient, I am an advocate for myself and I am empowered to be who I want to be. I have proven once again that individuals with ASD can and should be hired to work to the best of their ability.

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April = Autism Awareness

Autism Awareness Month is a time for learning about autism and introducing others to new ideas as well as a celebration of individuals on the autism spectrum. It’s also the perfect time to discover Autism NOW’s new website.

Autism NOW is a national initiative of The Arc funded by a grant from the Administration on Developmental Disabilities charged with becoming the nation’s source for resources and information on community-based solutions for individuals with autism, other developmental disabilities and their families. One of those topline resources is a series of webinars about autism spectrum disorders (ASD), early detection and intervention, and organizations and activities supporting acceptance and celebration.

Sign up for a free session held every Tuesday and Thursday from 2:00 p.m. to 3:00 p.m. (EST) throughout Autism Awareness Month. Designed for self-advocates, families, professionals, and the general public, these webinars encompass a wide variety of topics and practices in the area of autism spectrum disorders (ASD) and developmental disabilities. Space is limited and we’re sure you won’t want to miss these opportunities.

Upcoming topics will focus on:

  • An overview from National Disability Rights Network – what you need to know
  • Health Insurance Options for Children with IDD or on the Spectrum
  • An overview of legal advocacy at federal level based on state wide development disability Council expertise (NACDD)
  • Learn about Rest Assured, a new assistive technology that can change the face of care and promote independent living

Check out the full list of available Webinars and sign up now at www.autismnow.org. While you’re there, take some time to explore the new website then spread some awareness to the rest of the world. You can like us on Facebook, follow us on Twitter, read our latest news and share our URL with everyone you know. Together we can raise awareness for autism for April and beyond!

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The Arc and the Autism Society Team Up on the Autism NOW Center

Autism NOW Logo imageThe Arc and the Autism Society are joining forces on Autism NOW: The National Autism Information and Resource Center, a new and dynamic National Initiative of The Arc funded by the Administration on Developmental Disabilities.

The partnership includes participation on the National Advisory Committee and providing information and referral services through the Autism Society’s AutismSourceTM national contact center. The Autism Society’s chapter network will also be tapped to share information with the broader autism community about the Autism NOW Center’s activities and resources.

The Autism Society has provided information and referral services to the community through AutismSource since 1971. Families can access AutismSource at www.autismsource.org, submit an inquiry through www.autism-society.org/asa_contact or by phone at 1-800-3Autism.

In October, The Arc received an award of $1.87 million for fiscal year 2010 to establish a national resource and information center on Autism Spectrum Disorder (ASD) and other developmental disabilities. To learn more, visit autismnow.org.

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The Arc and the Autism Society Annouce Collaboration on the Autism NOW Center

The Arc and the Autism Society collaborate on Autism NOW: The National Autism Information and Resource Center — a National Initiative of The Arc and funded by the Administration on Developmental Disabilities. The partnership will include the engagement of the Autism Society in several aspects of the Center’s activities, including participation on the National Advisory Committee, providing information and referral services through the Autism Society’s AutismSource™ national contact center, and utilizing the Autism Society’s chapter network to disseminate information to the broader autism community about the Autism NOW Center’s activities and resources.

“We are thrilled that Autism Society will play such an important role in the operations and outreach of the Autism NOW Center,” stated Peter V. Berns, CEO of The Arc. “The Arc and Autism Society working together will ensure that more families connected to autism and other developmental disabilities have more meaningful resources and solutions for their needs.”

“We are looking forward to working with The Arc on Autism NOW to ensure that individuals on the autism spectrum and their families get the help they need in finding quality resources,” said Lee Grossman, President and CEO of the Autism Society. “We applaud  the Administration on Developmental Disabilities for responding to the community’s call for this much needed national resource and are pleased to contribute to it.” The Autism Society has provided information and referral services to the community through AutismSource since 1971.

In October, The Arc received an award of $1.87 million for fiscal year 2010 to establish a national resource and information center on Autism Spectrum Disorder (ASD) and other developmental disabilities. In collaboration with several key partners, The Arc is implementing an innovative and dynamic initiative to engage and leverage a national network of disability, aging, military, and family organizations to deliver information and resources relevant to individuals with ASD and other developmental disabilities. More information about the Center can be found at autismnow.org.

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Ann Cameron Caldwell Appointment Connects The Arc With Academia

The Arc’s very own Research and Innovations Officer, Ann Cameron Caldwell, Ph.D., was appointed as an affiliated research assistant professor at the University of Illinois’ Department of Disability and Human Development (DHD) in the College of Applied Health Sciences.

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Ann Cameron Caldwell talks about the Autism Now center at The Arc’s 2010 Convention.

This honorary appointment at Dr. Caldwell’s alma mater will not only allow her to pursue more formalized research relating to individuals with intellectual and developmental disabilities but will greatly enhance The Arc’s ability to generate new knowledge via research. And as Ann Cameron’s star rises in the academic community, the light will reflect well on The Arc and it’s new Autism NOW resource center, which she heads under a large federal grant.

The Department on Disability and Human Development is part of the Association of University Centers on Disabilities (AUCD), hosts many federally-funded programs including the Rehabilitation Research and Training Center on Aging with Developmental Disabilities. Also, it offers one of the premiere doctorate programs in Disability Studies.

“This is truly an honor, and I look forward to advancing efforts to better understand the needs of and solutions for people with intellectual and developmental disabilities and their families,” stated an always-humble Caldwell, who remains fully engaged in her position at The Arc. Pat yourself on the back, Ann Cameron! This is something truly special.

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The Arc Receives ACF Award of $1.87 Million for National Autism Resource and Information Center

Washington, DC – The Administration on Developmental Disabilities (ADD), within the Administration for Children and Families (ACF) at the U.S. Department of Health and Human Services, announced yesterday that The Arc will receive an award of $1.87 million for fiscal year 2010 to establish a national resource and information center on Autism Spectrum Disorder (ASD) and other developmental disabilities.

The Arc, in collaboration with several key partners, will implement an innovative and dynamic initiative, called Autism NOW: The National Autism Resource and Information Center, to engage and leverage a national network of disability, aging, military, and family organizations to deliver information and resources relevant to individuals with ASD and other developmental disabilities.

“The Arc and our partners are primed and ready to build a dynamic resource to address the needs of people with ASD and other developmental disabilities through this national network. We are proud to have the opportunity to launch Autism NOW, a much needed resource. It is especially significant that self-advocates will have a meaningful role in leading, implementing and realizing the goals of this innovative project,” said Peter V. Berns, CEO of The Arc.

Other partners include the Autistic Self Advocacy Network (ASAN), and Self Advocates Becoming Empowered (SABE) to provide expertise from the self-advocate perspective. For research expertise in key areas across the lifespan in ASD and other developmental disabilities, The Arc has partnered with members of the Association of University Centers on Disabilities (AUCD) Network, also referred to as UCEDDs (University Centers on Excellence in Developmental Disabilities), the Institute for Community Inclusion from the University of Massachusetts, the Developmental Disabilities Institute from Wayne State University, and the Center for Community Inclusion and Disability Studies from the University of Maine.

For deep policy expertise in areas of autism, family support, health care implementation, and aging, partners incude Brandeis University’s Heller School of Public Policy and the National Council on Aging (NCOA). The Arc has engaged a national dissemination team that will connect efforts to key stakeholders in every state and territory in the United States, including the National Association of Councils on Developmental Disabilities (NACDD), National Disability Rights Network (NDRN), Association of University Centers on Disabilities (AUCD), the National Military Family Association (NFMA), National Council on Independent Living (NCIL), and the American Association on Intellectual and Developmental Disabilities (AAIDD). Other key autism organizations will also be included in the Center’s activities.

The project will be led by Ann Cameron Caldwell, Ph.D., the Chief Research and Innovations Officer for The Arc and Tonia Ferguson, Special Projects Director.  “The new National Autism Resource and Information Center will fill a great need in the autism community by providing high-quality resources and information on community-based services and interventions for people with ASD and their families.  The Arc understands the challenges that families face; and we also recognize the vast contributions that people with ASD and other intellectual and developmental disabilities make to our societies and communities,” Caldwell said. “We are proud to have people that identify as having ASD or other intellectual and developmental disabilities (self-advocates) as full partners leading and implementing this initiative.”

“Autism is a heart-wrenching condition that presents special challenges for many families,” said HHS Secretary Kathleen Sebelius. “We want families to know that we are listening to them, and
the release of this grant award, brings us one step closer to providing the resources needed to improve the quality of life for people with ASD and other developmental disabilities.”

“People with ASD and other developmental disabilities face significant challenges in accessing the supports they need,” said Commissioner Sharon Lewis of ADD. “This new center will serve to connect people with ASD and their families to services and activities that promote self-determination, independence, and inclusion in the community.”