What it is really like to be diagnosed with Autism Spectrum Disorder (ASD) as an adult

By Amy Goodman, Co-Director of the Autism NOW Center, at The Arc of the United States

Amy Goodman

Amy Goodman

In the recent past, Jerry Seinfeld had mentioned that he might be on the autism spectrum and then he had to backtrack and say he wasn’t on the spectrum. Because of a play he saw that was about autism, he thought he had some connection to it. That is all fine and dandy, but what about individuals who have been diagnosed with it as an adult and live with it every day. I just wanted to say that autism, ASD, or Asperger’s is nothing to be taken lightly. It is a developmental disability that affects how one thinks and it is the reactions that one has to the environment around them.

To me what it means to be diagnosed as an adult is this: It meant I finally found what I had been searching for, for more than 30 years. It meant closure of something looming over me. It meant satisfaction in me and my life in general. It was a relief to put a name to my idiosyncrasies and it gave me understanding and wisdom.

I was able to take responsibility for my life, make new plans on what I wanted to do with myself and I was able to put the pieces together and step through the next hurdle in my life. It gave me freedom to explore new opportunities and to see myself for who I am. I had a new found confidence and I realized I’m not different, that I do have a purpose and it also allowed me follow my dreams and go in a totally new direction.

It opened my eyes and washed away all my guilt that I had about myself and my abilities; therefore I was able to move forward with my new life. It gave me a whole new understanding of myself. The understanding was this that I am who I am and I am not bad, diseased, or broken. I have a name for all my challenges but that it is not a label, it is not bad, it just is. It is part of who I am and it will always be with me, but in the end does it really matter that I am on the spectrum? No, it does not. I am a human first and I have a name, Amy, autism or Asperger’s does not define me. So, I stopped obsessing over it, embraced it for what it is and I used my characteristics to help me to identify my next steps.

I took those next steps and I found that I am lovable, capable, and that I can do better than what others thought I was capable of doing. In fact, I have expanded my horizons and have even impressed myself with what I can do.

It means you know who you are, and it helped me to identify what I needed to do and by having this new found knowledge I was able to help others to see the light as well. Individuals with autism and Asperger’s are capable, bright, and able to achieve all of their dreams and then some if they just put their mind to it. Some individuals may need more help along the way than others, but don’t ever let anyone tell you “you can’t” because the reality is you can.

Dream big, live life to the fullest, and be happy. Do what you are meant to do. Being diagnosed as an adult gave me inspiration to do something, that something was go to graduate school and get my Master’s in Special Education with a minor in autism, so do something and make something of yourself. It can be done, if you have hope, happiness, and faith and you will succeed. Don’t give up, always remember to smile and remember this: No is not the answer. Yes is always the answer and what was the question? Oh I guess I forgot oh well it doesn’t matter because the answer will always be what you want it to be. That is yes, I can Yes, I will and Yes, I did. I conquered it and now that is all I have to say.

The Arc Calls on Cuyahoga County Prosecutor to Pursue Ice Bucket Challenge Assault Perpetrators to Fullest Extent of the Law

Washington, DC – As the nation has reacted with outrage to the incident in Bay Village, Ohio where a teenager with autism was doused with urine instead of ice water in a fake Ice Bucket Challenge, The Arc is calling on the Cuyahoga County prosecutor’s office to charge the five teenagers identified in the case to the fullest extent of the law.

“The perpetrators of this horrific act, who reportedly were neighborhood friends of the victim, need to be held accountable for their behavior.  While some seek to characterize what was done to this teen as an innocent prank, it is anything but.  Call it what it is – it was an assault and abuse.  These kinds of acts are an outright attack on the humanity of people with autism and other intellectual or developmental disabilities in Ohio and nationwide.  There is no possible excuse for this type of assault and the perpetrators should be prosecuted,” said Peter Berns, CEO of The Arc.

“Unfortunately, people with disabilities experience violence and abuse at high rates, often at the hands of abusers who are known to them.  Many have a strong need to feel accepted and fit in which can, at times, lead them into places and situations with people who they think are their friends, but who are anything but.  When abuse or other violent acts are committed, whether by friends or complete strangers, our legal system must respond.  In this case, the Cuyahoga County prosecutor’s office must send a message that will stop future perpetrators in their tracks – it is not okay to attack a person with a disability,” Berns added.

The Arc has a long history of standing up for the rights of people with intellectual and developmental disabilities (I/DD), and supporting them to do the same, when they find themselves in dangerous situations and in our legal system.  Most recently, last year, The Arc was awarded a two-year grant for $400,000 by the U.S. Department of Justice, Bureau of Justice Assistance (BJA) to develop the National Center on Criminal Justice and Disability (NCCJD).  This is the first national effort of its kind to bring together both victim and suspect/offender issues involving people with I/DD under one roof.  NCCJD is a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with I/DD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system.  Currently, NCCJD is developing training and technical assistance for law enforcement agencies that will support police departments like Bay Village’s force, as well as prosecutor’s offices,  such as the office in Cuyahoga County, to administer justice for people with disabilities.  And The Arc supports people with I/DD to be prepared for situations like these, connect them with other survivors of abuse and bullying, and find a collective voice to stand up against it.

The Arc also runs the Autism NOW Center, an online resource center that helps people weed through the volumes of information found online about autism spectrum disorders and provide high-quality, vetted resources and information to people with autism and other developmental disabilities, their family, friends, colleagues, teachers, employers and others.

“Never should a human have to endure such needless acts of abuse. It is never justified and it is never the victim’s fault for they may not even know why they were treated the way they were, but there are people who do. The ones who do know why this kind of abuse is so wrong are the ones who stand together, like The Arc and our chapters, which stand united to push for these random acts of abuse to be punished by law.   Random acts of kindness make a better person. Be good to those in need and one day the favor will be returned twofold,” Amy Goodman, Co-Director of the Autism NOW Center.

“We cannot stand by and accept this horrific act- the prosecutors know what they must do and they must do it swiftly to send the message that attacks on people with disabilities will not be tolerated and will be punished,” Cindy Norwood, Executive Director, The Arc of Greater Cleveland.

April is Autism Awareness Month

Child holding face signApril is national Autism Awareness Month and The Arc and The Autism NOW National Autism Resource & Information Center are working to empower people with autism spectrum disorders (ASD) with the information and resources they need to live their lives to the fullest potential. We are also working to help others become more accepting of people with ASDs.

With the CDC declaring that 1 in 68 children may be impacted by autism spectrum disorders, it’s a fair bet that each one of us knows someone with autism or someone who has a family member or friend with autism. That’s why it’s important to dispel all of the myths and misinformation to understand and accept what having an ASD really means. And that’s why The Autism NOW Center exists, to weed through the volumes of information out there and provide high-quality, vetted resources and information to people with autism and other developmental disabilities, their family, friends, colleagues, teachers, employers and others.

To promote awareness and acceptance, we invite you to view and share a new video about Autism NOW and learn more. Also, we encourage you to join in the conversation! Throughout April, we will publish the personal stories and perspectives of people with autism on the  Autism NOW blog  to generate discussion about autism awareness and acceptance. We invite your comments here and on our social media channels using the hashtag #AutismAware.

The Arc Reacts to Newest Autism Prevalence Data Showing 30% Increase in Two Years

Washington, DC – Today, The Centers for Disease Control and Prevention (CDC) released new data showing the prevalence of Autism Spectrum Disorder (ASD) continues to rise.  The new rate of 1 in 68 reflects a 30% increase from two years ago when the CDC released data that 1 in 88 children has autism.

“The numbers are staggering – in 2008, the CDC reported 1 in 125 children had autism and related disorders.  Today’s data showing nearly double the prevalence since then emphasizes the immediate need for better services and supports for people with autism and their families.   Autism is clearly part of the human condition and people with autism live in all of our communities.  While we have made progress in recent years to raise awareness and improve services and supports for individuals with autism, it’s simply not enough.

“From protecting the Medicaid program – the single largest funding source of services and support for people with autism and their families – to reauthorizing the Combating Autism Act before it expires in September, we have a lot work ahead of us on Capitol Hill to ensure that people with ASD are fully included in society and that ASD prevention, surveillance, public education, and professional training continue apace.  And as a grassroots organization with nearly 700 chapters across the country, The Arc will continue to lead the way and work with people with autism to support their full inclusion and participation in the community throughout their lifetimes,” 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.  The Arc is the largest provider organization for people with autism in the United States. Chapters of The Arc provide services and supports for people with autism, their families, and service providers.

The Arc runs Autism NOW: The National Autism Resource and Information Center, a federally funded resource for people with ASDs and their families.  The online center aims to help people separate fact from fiction when it comes to autism.  In addition, Autism NOW provides trainings and information and referral services.

The Arc is also running a national airport rehearsal program for people with autism, other developmental disabilities, and their families called Wings for Autism.  Based on a program launched by one of our local chapters in Massachusetts responding to the needs of a family looking to take a trip to a theme park, the program is a full dress rehearsal for air travel, including the process of ticketing, security clearance, boarding, and at some locations, taxiing on the runway.

And earlier this year, The Arc announced a new partnership with Specialisterne, a Danish nonprofit, to replicate its successful model for recruiting, assessing, training, placing and supporting people with autism in jobs in the tech industry in the United States.  Specialisterne creates meaningful employment for people with autism by building relationships with technology companies that need employees whose skill sets match the characteristics of many people on the autism spectrum.  Chapters of The Arc are working with Specialisterne to serve tech companies, such as SAP and CAI, which are eager to employ people with autism as software testers, programmers, data quality assurance specialists and other technology positions.

Autism NOW’s Co-Director Receives National Honor

Amy GoodmanEarlier this month, Amy Goodman, Co-Director of the Autism NOW Center, received the Outstanding Advocate of the Year award from The Autism Society of America. This comes as no surprise to The Arc’s national staff who work with Amy on a daily basis. Her passion for what she does is present in every task she undertakes.  The Autism NOW Center wouldn’t be the success it is without Amy’s dedication. You can view Amy at work answering questions in The Autism NOW Answer Series.

Read in Amy’s own words why winning this award is so important to her:

This award means a lot to me because it is proof that all my hard work and dedication to my profession has paid off and that individuals do appreciate me. It stands as a testament that what I do makes a difference in the lives of individuals with autism. I am so lucky to be able to share my life with those in need and I feel proud to be able to say I’m an individual with autism who has paved the way for others to enjoy life to the fullest extent.

This award is not only for me personally but to be shared with all my colleagues at The Arc, my friends and colleagues at The Autism Society of America, Robert Hunter of The Grateful Dead for enabling my brother to make a connection with Kent Moreno, who told us about Asperger’s syndrome in the first place, and all my friends and colleagues at Marshall University and the College Support program because if it were not for all their support and encouragement I would not be where I am today. I owe it all to them.

I may not move mountains by myself, but I can advocate and give others a voice they may not know they even have. This award has validated my life for me and I now know I am where I need to be and that I will survive in this world. It has given me a sense of self-worth and the confidence to know I can achieve or accomplish things above and beyond what others said I would never do.

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.

What Do You Think About Autism NOW?

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

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.