The New Autism Numbers – Why They Matter

Winter Bridge Over River

This past week, the Centers for Disease Control released their new data on the prevalence of autism. The numbers are staggering: an estimated 1 in 88 children will have autism. The number for boys is even higher: 1 in 54.

The implications of these numbers that seem on an unobstructed downhill slide stopped me in my tracks.

Think ahead ten years from now. Think about your family. A classroom. A school bus. Your church or synagogue, a train car, where you work and where you live. Think about your local Chapter and its capacity to respond to this population and their families, including funding resources. Think about the number of 1 in 88 and how that plays out in a human scale.

Are we ready?

Are we ready?

The Arc stands firmly embedded in more than 700 communities and it collectively serves more people with autism than any other organization. In this role, we must involve, engage, understand, and embrace the rising cohort of families connected to children with autism and provide them access to what we have learned, what we know.

An observation: It seems that many families connected to autism are indeed focused on the “cure” for the phenomenon that they feel has suddenly obscured the personality, communications, and functioning of their child. This focus has created a rupture at times between those who would and would not cure disabilities, sometimes creating robust debates within disability identity and disability pride and civil rights frameworks. Face it – many of us have worked hard to have society accept a “disability is a natural part of the human experience” attitude to advance full inclusion and quality life opportunities for people with disabilities. Going back to a “cure” stance and invoking medical model thinking for disability issues is perceived as a threat by many in the disability world.

“The Arc serves and supports people no matter what definitions are given to a specific diagnosis by the medical community.”

Understanding this is a loaded and sensitive topic. I think we can all agree that encountering autism is a much different experience than when a family encounters the genetically or physically explainable intellectual or developmental disability at birth. In my journey, I have listened, as perhaps you have, to heartfelt stories of how a child was one day, and then was someone else over a very short amount of time due to something called “autism.” There are no answers. No reasons or even proof – except for the altered behavior. From listening – without trying to alter their perspectives (an important element in the listening) – I now have a better understanding and empathy for why families seek the “cure” for autism. It’s not because they hate disability or value people with disabilities less than those who don’t have a disability; in fact, many autism-related families do not identify as being part of the disability community and have never been taught our principles. Families connected to autism may see the autism event as a preventable and perhaps reversible medical phenomenon that had monumental detrimental effects on their loved ones. And even as some do not accept autism as the obscuring agent, many surge into full acceptance of the child that now exists, as a whole person. Loved, celebrated, accepted, supported. Seeing them in action is not much different than watching our own families in action within The Arc.

And there lie the differences and the commonality, which are not, I would argue, mutually exclusive of the other. All we need is a bridge.

Building the Bridge

The Arc supports families connected to people intellectual and developmental disabilities across the lifespan, including those with autism. With families that are learning about us for the first time, we cannot be so ferocious in our demand for immediate alliance with our learned perspectives that we forget that we, too, started at some point on the road to understanding that disability is okay, it can be celebrated. At some point we learned for the first time what self determination, self advocacy, and disability pride are and how to infuse these principles into our daily lives. It is a journey. I do not believe that seeking answers and resolution to the question of autism are in conflict with our (The Arc’s) core values, mission, or principles. Whether autism is considered an epidemic or a public health emergency or not, The Arc serves and supports people no matter what definitions are given to a specific diagnosis by the medical community. I do believe that The Arc and others in the disability nation have a responsibility to understand these perspectives, to accept families for who they are and where they are in their journey. I believe that The Arc should offer them what we do know in terms of what inclusion means and how it can be achieved in the community with the right supports; about advocacy and self-advocacy, self-determination, disability pride; and provide culturally proficient services (autism as culture) to meet their needs. Along with that should come more thoughtful listening, a lowering of the aim against those who seek solutions, and the raising of a bridge to go with it.

In many ways, The Arc itself is a spectrum. A bridge, if you will. We serve and support many with an incredibly diverse array of needs, perspectives, diagnoses, and goals. Our mission: to promote and protect the human rights of people with intellectual and developmental disabilities and actively support their full inclusion and participation in the community throughout their lifetimes. There’s room in The Arc for many more.

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

“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

The Arc Responds to Potential Change in Definition of Autism

Washington, DC – The Arc is the nation’s largest and oldest human rights organization for the people with intellectual and developmental disabilities (I/DD), serving more than a million individuals and their families including people with autism, Asperger’s syndrome, and pervasive developmental disorder, not otherwise specified (P.D.D.-N.O.S).  In response to the news that the American Psychiatric Association is working on revisions to the definition of autism, The Arc issued the following reaction:

“Over the last decade, we have made major strides in ensuring that people diagnosed with autism, Asperger’s syndrome, and P.D.D.-N.O.S. have access to the services that advance their health, education, independent living skills, and work skills.  These efforts have increased inclusion in educational settings, and, in society, young adults with disabilities are gaining life skills that can lead to jobs and independence.  The unintended consequences of a diagnostic definition change could potentially limit access to the services that children and adults with autism and P.D.D.-N.O.S. need, potentially putting at risk their education, and the health and economic stability of their own lives and the lives of their families,” said Peter V. Berns, CEO of The Arc.

Autism Bill Now Law – Celebrate, but Back to Work!

Thanks to many of you who reached out to your Members of Congress as the clock ticked down on the Combating Autism Act – President Obama signed a three year extension of the law on Friday. Without approval by the House and Senate, and President Obama’s signature, this important law for children on the autism spectrum could have disappeared.

The Combating Autism Act provides funding to educate professionals about proper screening, diagnosis, and intervention for children with autism spectrum disorder and other developmental disabilities. It also funds autism research and surveillance. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program is just one of the things that the law supports.

While this is a moment to celebrate our success, our work is far from over. In 2014, Congress will need to revisit this law, and The Arc is committed to pushing for the next version to include services and research across the lifespan.

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. Families can access AutismSource at, submit an inquiry through 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. 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 or by contacting

HollyRod Foundation Giving Away Free iPads to Children with Autism

Many people with iPads love all the fantastic things you can do with them. The folks at the HollyRod Foundation think children with autism should be no different.

The foundation, started by Holly Robinson Peete and Rodney Peete thirteen years ago to give a voice and a hand to those striving for quality of life when theirs has been diminished due to disease or disorders, is giving away free iPads to children with autism.

This giveaway isn’t just about handing out the latest and greatest gadget, but helping children with autism communicate with the world around them in a richer, more fulfilling way.

To find out more about the giveaway, and to download an application, visit the foundation’s site. Don’t forget to spread the word about this to parents, self-advocates and anyone else who might be interested.

Here are the eligibility requirements:

  • The individual you are applying for must have a diagnosis on the autism spectrum (as identified in diagnosis report).
  • Reside in the United States of America .
  • Be non-verbal or minimally verbal (as identified in speech pathology report).
  • Be in financial need: Gross income not to exceed $35,000 single income family or $50,000 two-income family (as identified by documentation).
  • Have access to a computer and an iTunes account (some programs must be downloaded on a computer and transferred to the iPad due to size).
  • A professional on your team (i.e., speech pathologist, doctor, teacher) must be willing to take responsibility of the gift card that downloads the applications.