My Definition of Autism

Posted on April 4, 2013 by Guest Blogger

April is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism?” Amy Goodman is co-director of Autism NOW and an individual on the spectrum. Below is her personal definition of autism. Follow the conversation this month online using #autismaware.

By Amy Goodman

Being an individual on the autism spectrum means that I have a diagnosis of autism. So what. It doesn’t matter in the long run because it does not define who I am or what I can or cannot do. First and foremost, I am Amy, an individual who happens to have a diagnosis of autism. I don’t let it get in my way of anything. It does not present any challenges for me and if it does, I work to overcome those challenges by finding a way to jump through the hurdle and succeed at everything I do or try.

For me, it has been a positive experience finding out that I was on the spectrum. I have embraced it and used it to my advantage. It opened a lot of doors that otherwise would have stayed closed. I was able to move forward with my life when I found out. I went to Graduate school and chose the path that was best for me. It helped me to focus on what I wanted to do with my life.

Knowing I was on the spectrum, and knowing that I could be a success has helped me to jump the biggest hurdle of all, obtaining and keeping a job in the autism field. The opportunities have been endless and by embracing my autism, I have grown as an adult. I finally found what I had been looking for more than 30 years – an answer to what direction I should go, and where I fit in in this world.

Explaining to someone not on the spectrum is very difficult. They just don’t seem to understand why I do what I do. They are always being pessimistic and saying that there is nothing wrong with me, which in this case is true. There is nothing wrong with me. It’s the attitude of others that only see the glass as half empty and that I’m not capable of doing anything at all. That is something that needs to be fixed. Me? I’m the optimist. Don’t fix what isn’t broken. Fine tune it. If someone is on the spectrum, utilize their abilities and accommodate their needs, don’t question them. Work with them to maximize their brain capacity. See the situation through their eyes. Give them a chance to excel and most of all treat them with respect and dignity.

We may not be the most social of beings, but we certainly can learn and grow from our mistakes. Just remember there is more than one way to skin a cat, so explaining what it’s like living with autism is different for everyone on the spectrum. I don’t need to explain anything because I’m perfect the way I am. If I don’t like something I avoid it. If it hurts my ears, I wear earplugs or noise canceling headphones. There is a solution for every problem, one just has to do what is best for them and not worry about what others think.

Autism is part of me, so it should not define me or need explaining at all. Not everyone can pass as “normal” or “neurotypical” but who wants to be like them anyway? I am who I am and there is no changing me. Accept me for who I am and you will see autism in a whole new light.

What’s Your Definition of Autism?

Posted on April 2, 2013 by The Arc

Young Child With Autism As you may know, a new edition of the Diagnostic Statistical Manual (DSM) is coming out in May with changes to the definitions of certain disorders on the autism spectrum which is used by medical professionals, government agencies and insurers. There has been much talk about what this will mean to individuals and their families when it comes to obtaining a diagnosis and receiving services. But during Autism Awareness Month in April, The Arc and Autism NOW would like to refocus the conversation on the individuals living with autism day to day and ask: “What’s Your Definition of Autism?” What does the word “autism” really mean to you on a personal and individual level?

This April, we invite you to join us in raising awareness about what autism really means. Here’s how YOU can participate in furthering the conversation during Autism Awareness Month – be sure to jump in with your thoughts and feelings on what the definition of autism is to you and share with everyone you know using the hashtag #AutismAware:

Follow Autism NOW on Facebook and Twitter

Follow The Arc on Facebook and Twitter

Join The Arc’s online community

Read The Arc’s blog

Join the Autism NOW forums

The Arc Reacts to New National Survey on Autism Prevalence

Posted on March 20, 2013 by The Arc

Peter V. Berns, CEO of The Arc

Washington, DC – Today, the Health Resources and Services Administration and the Centers for Disease Control and Prevention (CDC) agencies within the U.S. Department of Health and Human Services released a report which estimated autism spectrum disorder (ASD) prevalence based on parental reporting using the National Survey of Children’s Health. In the survey, the prevalence of parent-reported ASD among children was 2%, or 1 in 50, up from 1.2% in 2007. According to the CDC, however, much of the increase in the prevalence estimates from 2007 to 2011-2012 was the result of diagnoses of children with previously unrecognized ASD.

Last year, the CDC released new in-depth research estimating that 1 in 88 children had been identified with ASD. The CDC will release its next round of this kind of research in 2014. While the new study is based on parent reporting, a different methodology than that used by CDC’s monitoring network, it has tremendous significance for our service systems.

“These statistics represent millions of families across the country that are looking for resources and answers to help their children. But meanwhile, the across-the-board budget cuts in Washington are hampering the vital efforts of federal agencies like the CDC and the National Institutes of Health, which are working to find the underlying causes of autism, and could have real consequences in our society,” said Peter Berns, CEO of The Arc.

“And these are not the only threats – lifeline programs like Medicaid, Social Security, and Medicare are on the table for real cuts that may impact the ability of these families to get services in the near and distant future for their children, as well as hurting adults with ASD who depend on those programs today. It is not enough to say we want a balanced approach to deficit reduction – we must stand together and say that we cannot simply cut our way out of this situation. We need more revenue to pay for critical investments like prevention and treatment, as well as services and supports for people with autism,” added Berns.

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.

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.

What Do You Think About Autism NOW?

Posted on January 15, 2013 by The Arc

Have you ever visited www.autismnow.org? We’d like to know what you think. Did you find what you were looking for? Do you have any suggestions for how we might improve? Take our short survey to help us ensure that this website is serving you well.

If you’re not familiar with autismnow.org, we highly recommend you take a look. Autism NOW: The National Autism Resource and Information Center is a project of The Arc funded, in part, by a grant from the Administration on Intellectual and Developmental Disabilities. It is designed to be a dynamic, interactive and central point of quality resources and information for people with Autism Spectrum Disorders (ASD) and other developmental disabilities as well as their families and others. In addition to autismnow.org, this project has created events, online education opportunities and a vibrant online social community dedicated to collecting and sharing quality information, vetted by experts and easily accessible. If you are an individual who identifies as being on the Autism spectrum or are just interested in getting more information about ASD, we invite you to explore and share the site and then take the survey if you have some feedback you’d like to give.

Join Us for our First Twitter Chat! We’ll Talk About Autism with the CDC and More

Posted on April 23, 2012 by The Arc

On Monday, April 30th at 3pm EST, The Arc will host a Twitter chat with the Centers for Disease Control and Prevention (CDC) and other organizations to talk about the latest data on the prevalence of autism and the resources available to people with autism spectrum disorders and their families. During the hour-long chat, we will take your questions and comments – so join us for this Twitter dialogue!

We will explore topics like the early signs of autism in a child, the latest research, including the CDC’s new prevalence data, and resources available through The Arc’s Autism NOW Center.

Following the chat on Twitter is easy. First, follow @TheArcUS and @AutismNowCenter on Twitter. We’ll be using the hashtag: #TheArcChat – this link will allow you to follow the conversation.

There, you’ll be able to follow the conversation in real-time. Keep in mind, if you want to participate in the chat, you’ll need an account on Twitter. If you haven’t used Twitter before, here’s a great link to learn more about it and the basics of Twitter.

If you need an accessible version of Twitter, we recommend using Easy Chirp. Simply visit its website, and sign in with your Twitter credentials.

If you want to be part of the conversation on Twitter, simply use the hashtag: #TheArcChat when you tweet. You can find out more about hashtags in Twitter’s Help section.

We hope to hear from you on Monday, April 30th during our Twitter chat on autism.

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

Posted on March 29, 2012 by The Arc

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.

“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 Center Launches Local Agencies Directory and Mobile Site

Posted on February 24, 2012 by The Arc

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!

Welcoming Amy Goodman to The Arc

Posted on February 8, 2012 by Guest Blogger

By 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.

April = Autism Awareness

Posted on April 5, 2011 by David A. Kennedy

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!

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

Posted on December 21, 2010 by Kristen Bossi

Autism NOW Logo image The 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 about the Center visit http://www.autismnow.org.

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