My Definition of Autism

Amy GoodmanApril 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?

Young Child With AutismAs 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

Sign up to receive Autism NOW’s Prism e-newsletter

Join the Autism NOW forums

The Arc Reacts to New National Survey on Autism Prevalence

Peter Berns

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.

The Arc’s Statement on the Military’s Pilot Program for Extending Behavioral Health Therapy for Autism Spectrum Disorders

Washington, DC – The Arc released the following statement after the passage of the 2013 National Defense Reauthorization Act in the House and Senate.  The reauthorization will create a one year pilot program to expand the treatment of autism spectrum disorders (ASD) by TRICARE, the health care program for our nation’s military.

“We appreciate this step forward for military families that have children with ASD.  We are hopeful that the pilot program will lay the foundation for making critical behavioral health therapies available to military dependents with a range of developmental disabilities that can greatly benefit from the services.

“We regret that language developed by Senators Kirsten Gillibrand and Patty Murray extending coverage to dependents with other developmental disabilities was not included in the final bill.  There is considerable research proving applied behavioral analysis (ABA) to be an effective intervention for a number of developmental disabilities, including ASD.  ABA is particularly effective in reducing self-injurious behaviors in people with the most significant disabilities.

“The inclusion of other developmental disabilities would also have greatly benefitted military families who have children with ASD since many of these children only receive their diagnosis after many years.   Limiting the covered services to those with an ASD diagnosis will result in children not being treated at the earliest age possible, which is shown to have lifelong, cost effective benefits.

“We look forward to the Secretary of Defense’s report on the feasibility and advisability of establishing a beneficiary cost share for the treatment of ASD under TRICARE and its Extended Care Health Option (ECHO) Program for dependents with disabilities,” stated Peter V. Berns, the Chief Executive Officer of The Arc.

The Arc’s Statement on the Tragedy in Newtown, Connecticut

“On behalf of The Arc and the families we represent, our thoughts and prayers are with the families of these children and their teachers in this horrific tragedy.  Our hearts are simply broken for the parents, loved ones, and the community of Newtown.

“There are so many questions surrounding this tragedy.  As more information comes to light, the media is reporting that the individual responsible for this violence may have Asperger’s Syndrome, a diagnosis on the autism spectrum.  As we struggle with this tragedy, it is important that the public is aware that people with autism spectrum disorders are not more likely than others to be violent.    This is a horrific event in our nation’s history, and as we mourn, we must come together as a nation to support this Connecticut community.”

Media inquiries can be sent to Kristen McKiernan, mckiernan@thearc.org

Wings for Autism Workshop: A Parent’s View

By Tonia Ferguson, Director, National Initiatives at The Arc

Plane in Sky

Last month, I had the pleasure of attending Wings for Autism Workshop at Logan International Airport in Boston, MA.  As a parent of a child with autism I didn’t know what to expect, but was excited to participate. I can’t even begin to describe what a wonderful program this is and how much of a difference it can make to children on the spectrum and their families.

I’ve never travelled with my son, Jared because I have always had concerns about how he would deal with security and the excess of people and noise that fill airports on a daily basis.  Observing the way that Wings for Autism addressed the concerns I had, and went into further detail to prepare individuals for all the aspects of travel truly impressed me.

The daylong event gave parents and children a “test run”, where they went through every step of traveling on a major airline. With volunteers from JetBlue including flight attendants and pilots, officials from the Transportation Security Administration (TSA), ticket counter agents, and collaboration with other airlines and their staffs the simulation truly prepares parents and children for what to expect when traveling. The simulation requires families to clear security, board the plane, fasten their seatbelts, and prepare for take-off.  A highlight for the kids was a tour of the cockpit given by a pilot.

For children that are having issues with the various parts of the simulation there are behavioral specialists on hand to help parents and children work through any problems they may be having.

While this event is intended to benefit the families participating, I was impressed to see the volunteers from TSA and JetBlue benefiting from the experience as well.

The Arc’s national office plans to work with The Charles River Center (a chapter of The Arc) to expand Wings for Autism. If you are interested in the program and want to find out how to bring a workshop an airport near you please do not hesitate to email me.

This experience opens up a world of possibilities for my family and other families with children on the spectrum, the sky’s the limit. I look forward to working with Wings for Autism as they expand this innovative program and I hope to take Jared to a simulation at our local airport in the near future.

To view a video about the event visit The Charles River Center’s website.

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

Twitter Bird Logo

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 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 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.

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.