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What It’s Like to Be Diagnosed With Autism Spectrum Disorder as an Adult

/in /by The Arc

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

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.

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April Is Autism Awareness Month

/in /by The Arc

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.

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Let’s Go Out on March 29

/in /by The Arc

The Arc Plans for a National Day Out Event for Developmental Disabilities Awareness Month

March is national Developmental Disabilities Awareness Month. The Arc invites you to join us on March 29 in a grassroots initiative to help raise awareness about people with intellectual and developmental disabilities (IDD).

What should you do? If you are a person with IDD or know someone who has IDD, simply make plans to go out somewhere in public on Saturday, March 29. That’s all. Just plan a day out and about enjoying the things you like to do. And, in the process help raise awareness and generate some conversation about people with IDD during Developmental Disabilities Awareness Month. This one-day movement will serve to harness our collective power to gain allies, foster understanding, dispel myths and encourage a greater understanding among people without a disability.

Year round, The Arc works to promote and protect the rights of people with IDD to live, learn, work and play as valued and contributing members of their communities. We fight for legislation to remove barriers to full participation and inclusion and have been successful on many fronts. But sometimes the barrier has nothing to do with the width of a doorway or an employer’s hiring practices. Sometimes the barrier is as subtle as a nervous glance from an uninformed person in line with you at the market.

So, this March 29, let’s all go out and start breaking down those social barriers once and for all. As an individual with IDD, this is your chance to personally help raise awareness just by being yourself and participating in the things you enjoy alongside others in your community without disabilities. Make plans now to hit the movies, the park, your local shopping center or restaurant and maybe spark some conversation in the process. If you are a friend or family member of a person with IDD, make plans now to enjoy a fun activity together in public and take the opportunity to show others that we’re all not so different after all.

Visit The Arc’s website at www.thearc.org/lets-go-out and find out more about this campaign and things you can do join in. And spread the word using the hashtag #DDAware on social media during the month of March. Follow us online at www.facebook.com/thearcus or www.twitter.com/thearcus and be sure to show us what you end up doing on March 29 by sharing your photos using the hashtag #DDAware.

Want to do more? You can help support The Arc’s national organization through a tax-deductible donation. Or you can find your local chapter at www.thearc.org/findachapter.

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On His Own Terms

/in /by The Arc

Ricardo Thornton always had big hopes and dreams. But as is too often the case with people with intellectual and developmental disabilities (IDD), they seemed almost impossible to achieve. Fourteen years of Ricardo’s childhood was spent in the confines of Forest Haven in Laurel, Maryland. Forest Haven (closed in 1991) was the District of Columbia’s public institution for children and adults with a variety of mental, intellectual, and developmental disabilities that had a dark history of abuse of residents and below standard conditions. His sister and brother were also residents and, sadly, his sister died there, never experiencing a full life outside of the institution.

Ricardo was determined that his life would have a different outcome, but leaving the institution was just the beginning of his struggle. Ricardo took his first step by landing a job at the Martin Luther King Library, where he has worked for more than 35 years. Donna, a friend and fellow former resident of Forest Haven, got a job nearby at Walter Reed Medical Center. Donna soon got her own apartment and Ricardo’s weekly visits to her blossomed into romance.

For most, this would not be extraordinary, but at that time people with IDD were rarely encouraged to live independently and certainly not to get married. Unlike The Arc, most developmental disabilities agencies, caregivers and even family members did not believe that people with IDD could be employed, let alone live independently. Fewer still believed that they could have mature, intimate relationships.

Ricardo and Donna forged the way, but the journey wasn’t easy. While other couples only need to fill out basic information for a marriage license, Ricardo and Donna were told that it was illegal for people with IDD to get married in D.C.! With support from The Arc of D.C. and other disability rights organizations, and through the couple’s own sheer determination, Ricardo and Donna eventually realized their dream of being together.

Life progressed, and like many newlyweds they wrestled with the question of parenthood, something their friends and medical personnel advised against. But, eventually they had a baby boy, who is now a successful 25-year-old with a wife and daughter of his own.

Now, Ricardo is one of The Arc’s most well-known self-advocates – living life on his own terms and inspiring others with IDD. He shares his life story with audiences across the country, pointing out that making his hopes and dreams a reality required determination and the right amount of help, guidance and resources. His inspirational story has even been made into a movie called Profoundly Normal.

“I’ve seen people with severe disabilities who have grown and accomplished great things given the right support,” he testified before the U.S. Senate’s Committee on Health, Education, Labor, and Pensions (HELP).

The Arc is proud to have been able to help Ricardo achieve his goals for more than 30 years. The Arc supports individuals with IDD in communities nationwide through a national network of chapters. In many cases, what people like Ricardo hope and dream for is what we often take for granted – from securing a job and getting married to having a child and living in the community of their choice on their own terms. We continue to advocate on behalf of the thousands of people with IDD who are still living in state run institutions. With the tireless efforts of The Arc of Alabama, Alabama became the first state in the southeast to no longer operate large public institutions, and in December 2014, Illinois will have closed 4 out of the 5 of its state run institutions.

Your support allows The Arc to continue its important work. You can help people like Ricardo and Donna live life on their own terms with your donation today.

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The Arc Urges the Senate to Act on the Convention on the Rights of Persons With Disabilities

/in /by The Arc

In advance of the U.S. Senate Foreign Relations Committee’s hearing today on the United Nations Convention on the Rights of Persons with Disabilities (CRPD), The Arc is urging the Senate to support this treaty because it is the right thing to do for American citizens with disabilities who travel abroad and for the millions of people around the world that currently don’t have the rights that we enjoy through our long history of disability rights advocacy.

“This treaty is modeled after The Americans with Disabilities Act, which affirms the rights of American citizens with disabilities by prohibiting discrimination in employment, public services, public accommodations and services operated by private entities. The Senate’s failure to pass the Convention on the Rights of Persons with Disabilities last year marked a sad day for individuals with disabilities across the globe and an embarrassing moment for our nation.

“Today’s hearing is an opportunity for us to fix the wrongs of last year and join more than a hundred other nations, millions of disability advocates, family members, and self-advocates in supporting the human rights for individuals with disabilities internationally. We will be following this process closely, and hope to see the Senate move forward with the CRPD,” said Peter Berns, CEO of The Arc.

Over the last year, The Arc has been working with numerous disability, Veteran’s, and civil rights advocacy groups to garner support for ratifying the treaty, which will promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities. For months, The Arc’s Public Policy team and grassroots advocates across the country have been working to promote the CRPD and ensure ratification. Currently more than 650 local, state and national disability and allied groups support the treaty.

The United States signed the CRPD on July 30, 2009, joining the 141 other signing nations. As of October 2013, the Convention had 138 ratifications and 158 signatories. On May 17, 2012, following almost three years of thorough review, the Obama Administration submitted its treaty package to the U.S. Senate for its advice and consent for ratification. On December 4, 2012, the United States Senate considered the ratification of the CRPD but fell 5 votes short of the 66 needed – two-thirds of Senators who voted.

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All Aboard: An Opportunity to Make America’s Railways More Accessible

/in /by The Arc

On the brink of the 23rd anniversary of the Americans with Disabilities Act (ADA), we celebrate the work of advocates like you who have made progress in your communities on so many issues. While train stations and platforms are more accessible, there is still a lot of work to be done. The problem isn’t your enthusiasm, or tenacity, or will – the problem is Amtrak and our antiquated rail system. Amtrak was given 20 years to comply with ADA regulations, and they have yet to reach their promise of reaching full accessibility standards. So The National Disability Rights Network and the nationwide network of Protection and Advocacy agencies for people with disabilities is going to be holding a week of action on Amtrak, and we need your help!

As we approach this historic anniversary of the Americans with Disabilities Act, many Protection and Advocacy agencies and other advocates for people with disabilities will be visiting Amtrak and commuter rail stations across the country to record and report as many accessibility problems as we can. We need you to start to help us during the week of July 21-27, the week of the 23rd anniversary of the ADA. Please take some time during this week to visit a local train station. While there, please take pictures, and fill out the survey to help NDRN determine whether the train station is accessible to people with disabilities. All findings can then be emailed to trainweek@ndrn.org.

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Equal Access to Relationships and Sex for People With Intellectual and Developmental Disabilities…It’s About Time

/in /by Leigh Ann Davis

A recent story in The Journal (Martinsburg, WV) about the debate over whether people with disabilities should legally be able to use sex surrogates touches on a very real yet often ignored issue within the disability community: rights regarding sexuality. People with disabilities are often seen as asexual and not supported to fully enjoy and express their sexuality at the same level as those without disabilities.

Here in the U.S., we struggle with fully understanding and accepting sexuality, especially if we are talking about our own children. And this is true whether or not our children have disabilities, but can complicate the situation much more for parents of children (including adult children) with disabilities. This international debate draws attention to a very real problem – sexuality typically is not considered a valid need that demands focused attention. And yet, who can measure the actual effects this inattention has on the disability community at large? For example, who knows what “behavioral issues” and other problems could be averted if sexual needs of people with disabilities were, at the very least, being acknowledged? What if their God-given relational and sexual needs were actually supported and even celebrated?

All moral arguments aside, have we considered every possible option to this dilemma and actively supported people with disabilities to pursue their own sexual fulfillment? Consider this: How likely is it that people with disabilities, especially intellectual disabilities, have access to consistent, effective education on ways to understand their own sexual feelings and act on those in safe and healthy ways? Are they being taught how to build safe and healthy relationships and then given opportunities to do so? Do they have enough opportunities to meet that special someone who could become a future spouse, boyfriend or girlfriend? Another consideration is the disproportionate amount of sexual trauma that people with disabilities face on any given day. The rate of sexual violence is twice that experienced by people without disabilities, and those with cognitive disabilities face the greatest risk of all. Is adequate counseling provided to victims so they are able to move forward confidently and securely in their own sexuality? What is the true effect of so much sexual violence within the minds, hearts and bodies of people with IDDs?

Whether parent or professional, we all have an important role to play in supporting people with intellectual and developmental disabilities to achieve their own relationship bliss (or at least try to as this can be elusive for many of us with or without disabilities), and that may or may not include sexual activity. By providing equal access to this basic human right, and refusing to treat people with fully functioning hearts and sex drives as if they were still children, or in some way asexual, a door is open to explore the full range of what it means to be human, including within the realm of sexuality.

For ideas and resources on how to support this cause, visit the Autism NOW’s website.

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“I Wanted to Make a Difference in the Community”

/in /by The Arc

By William Monaghan, Guest Blogger

In celebration of Developmental Disabilities Awareness Month, The Arc is encouraging individuals with intellectual and developmental disabilities (IDD) to “Empower Yourself, Empower Someone Else.” Today, The Arc offers you an article from William Monaghan, the President of the Delaware chapter of People First and an individual with IDD. Read on to find out more about William’s life and the steps he has taken to be his own best advocate.

This column first appeared in the Spring 2013 issue of Apostrophe Magazine to which Mr. Monaghan is a contributor. Apostrophe Magazine is a publication created for, about and by people with intellectual and developmental disabilities. You can subscribe to Apostrophe Magazine to read more interesting perspectives from people with IDD as well as columns from The Arc’s national office covering a variety of issues. And you can find out more information about how The Arc helps support people with IDD who are interested in self-advocacy on our website.

I am the president of Delaware People First in Wilmington. I was born in Wilmington and have lived here most of my adult life. A good thing about Delaware is that it’s near big cities like Philadelphia, New York, Washington, D.C. and Baltimore.

My mother and father were wonderful role models and gave me the opportunity to expand my horizons by sending me to the Riverview School in Cape Cod, Mass., where I was taught many skills that I feel helped me in my success in my adult years. I graduated from Riverview in 1974 and then attended Brandywine High School and McKean High School in Wilmington.

My mother and father were instrumental in helping me to achieve my goals. My mother’s name is T.J., and my father’s name was William Monaghan Sr. My father is deceased. I also have a sister, Andrea, and they all live in South Carolina. My wife, Barb, and I visit them when we have vacation and on holidays, and we also talk to them on the telephone.

I work for the Dupont Co. in Wilmington and have been employed there for 35 years, which I am extremely proud of. The job has taught me many things, including how to communicate with people and how to manage my time. I work in the clerical/printing department, and I really love my job. I do a lot of different things in my job, which keeps it interesting and challenging.

I joined Delaware People First in 2003, and from the very beginning, I wanted to become an officer. I felt like I could do a good job being a leader and guiding the group. I also wanted to make a difference in the community and was interested in self-advocacy and self-determination. There are 40-50 members in Delaware People First, and we also have a group in downstate Delaware with about 10 members. We meet once a month and have discussions about issues that affect the group, and we bring in guest speakers to talk about issues such as employment, transportation, self advocacy, emergency preparedness (Gary Mears from the University of Delaware has been working with us) and many other topics. We also have gone on many trips to New York, Washington, D.C. and Baltimore, and trips to the Delaware beaches. Delaware People First has allowed me to make new friendships, to help other people with disabilities speak up for themselves and to become stronger advocates. It has also helped me with public speaking where I feel comfortable talking in front of groups and other people. Delaware People First treats people like adults as we should be treated. That is my favorite thing about the group.

The advisers for Delaware People First are Debbie A. Nock, who has been an adviser for 16 years (an “old-timer” in her words) and Susannah Eaton Ryan, who has been an adviser for seven months. The important issues we are working on now include emergency preparedness, self-advocacy and self-determination. We are also planning a statewide advocacy conference in March 2013. We are working with many other groups in Delaware to prepare for the conference and hope to have more than 100 people participate. Delaware People First has many fund-raisers each year. We raise money by having fashion shows, hotdog and bake sales, car washes, selling tickets for Friends Helping Friends Day at Boscov Department Store, gift wrapping at Christmas for family and friends and participating in restaurant fund-raisers such as Friendly’s, Chick fil-A and many others.

My favorite things to do are going out with friends, going out to dinner, taking trips, bowling, playing golf, Special Olympics and spending time with my beautiful wife, Barb. My favorite TV show is “Two and a Half Men,” and my favorite food is Salisbury steak and mashed potatoes (I also have a few others of course).

My best qualities are being outgoing, friendly, courteous, trustworthy, loyal, cheerful and dedicated to people and causes. As other people have stated, I am a Boy Scout.

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Ask a Simple Question During Developmental Disabilities Awareness Month

/in /by The Arc

As part of a month-long campaign to make some noise during Developmental Disabilities Awareness Month, The Arc posed an open-ended question to our Facebook audience of just over 9,000 people. We asked them what they would like people to be more aware of when it comes to intellectual and developmental disabilities (IDD).

As of this writing, just a few hours after posing the question, several dozen of our friends chimed in, offering their answers, liking and commenting on other answers and sharing, sharing and more sharing. What is interesting is that almost every single answer touched on a unique concern or issue.

A challenge The Arc faces in its role as the national organization for people with intellectual and developmental disabilities is attempting to serve and advocate for a group of individuals who may have one or more of over 100 different diagnoses which fall under the umbrella of IDD at any stage in their lives. This naturally means that we have to work on issues ranging from early intervention and early childhood education, to transition from school to adult life, to inclusion in the community all the way to the most sensitive end-of-life issues.

One just has to glance at the responses to this question to see the scope of this challenge. Men, women and teens are posting about employment issues, under-diagnosed and under-represented conditions, respectful language, Individualized Education Programs (IEPs), the adult service system and what happens after high school, and parents with IDD raising their children.

But the first step to addressing those challenges is raising awareness. If the responses to our question on Facebook are any indication of the types of conversations that are happening across the country during Developmental Disabilities Awareness Month, then we are well on our way. If you are interested in joining this small army of advocates to raise awareness of what it takes to promote and protect the rights of people with IDD to live, learn, work and play as participating members of their communities, check us out on Facebook and Twitter, find out more about the issues on our website and learn how you can support the work of The Arc.

Empower Yourself. Empower Someone Else. #DDAware!

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Empower Yourself, Empower Someone Else

/in /by The Arc

Twenty-six years ago we successfully advocated for March to be declared National Developmental Disabilities Awareness Month. And, there is no doubt that we have made tremendous strides to promote and protect the rights of people with IDD to live, learn, work and play as valued and contributing members of their communities, the real strength of our message comes straight from the individuals we serve. No matter how effective our organization’s advocacy efforts may be, no one is as powerful an advocate for people with IDD as a person with IDD.

So, this year during March, The Arc would like to empower all individuals with IDD to appoint themselves as their own advocates. As a self-advocate, you can help take the movement for people with IDD to others in your community. It can start with a simple question. This March, ask everyone you meet: “Did you know that March is Developmental Disabilities Awareness Month?” That may spark a conversation – a teachable moment – when you can share your experience living with a disability with someone else.

All month, we’ll be working to raise awareness about the issues important to people with IDD. As a self-advocate, you can help us “turn up the volume.” Take this opportunity to empower yourself and empower someone else with some of these simple suggestions:

Follow the conversation on Facebook (facebook.com/thearcus), Twitter (@thearcus) and here on our blog and be sure to chime in when you have something to say using the hashtag #DDAware.