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Thanks for reading Prism: the newsletter from the National Autism Resource and Information Center.
AutismNOW.org: The National Autism Information and Resource Center

May Prism

Welcome to the Family

By Karen Wolf-Branigin
Director, Autism NOW Center


Greetings to everyone in the Autism NOW Center family. My name is Karen Wolf-Branigin and I recently joined The Arc of the U.S. as the Director of the Autism NOW Center. It has been my pleasure to meet the people that make the Autism NOW Center a leading, national autism resource and information center and share with you about what we have planned for the future.
 
As I’m beginning to learn about the Autism NOW Center, I thought it would be a good opportunity to shine a light on the wealth of information that we’ve produced since we opened our doors three years ago. The Center has a fine record of highlighting the most important issues that people on the autism spectrum and their supporters care deeply about. Our website is robust, with 402 resources, 105 archived webinars, 89 blogs, and 20 videos with new products added each month. Many of these products are written by people with Autism Spectrum Disorders, assuring that the Autism NOW Center is driven by and for self-advocates. Our slogan is Autism NOW, you empowered and we invite you to use these resources and share them with others to assist you in your efforts. 
 
The Autism NOW Center staff, Amy Goodman, Co-Director, Phuong Nguyen, Program Assistant and Kevin Wenzel, Senior Web Producer are informed, enthusiastic and mission-driven. Our partners, Self-Advocates Becoming Empowered and the Autistic Self Advocacy Network support the center as authors, presenters and guides. The 14 member National Advisory Committee includes self-advocates, family members, professionals and researchers that review materials and connect us to principals in the field. And last but certainly not least, our funder, the Administration on Intellectual and Developmental Disabilities at the U.S. Department of Health and Human Services provides not only resources but the vision and leadership to bring these resources to you. 
 
The Autism NOW Center operates a National Information and Referral Call Center. Contacting us by telephone (202) 600-3480 / (855) 828-8476 (toll-free) or email (info@autismnow.org) gives you the chance to communicate one-on-one with our knowledgeable staff about the issues that are important to you.
 
The Autism NOW Center is a place for self-advocates, family-advocates, professionals and researchers to share their insight and wisdom. Please join our family by engaging in our social media channels (Twitter, Facebook, Youtube) and submitting blogs for publication. We’d love to add your voice and welcome you to the family.

Living My Dream: A Panel Discussion

By Amy Goodman
Co-Director, Autism NOW Center


On April 11th, 2013, I attended the West Virginia Association of Positive Behavior Support conference in Summersville, West Virginia.  It was entitled “Building a Culture of Positive Behavior Support.”  I participated in a panel discussion called Living My Dream, where I was identified as an individual on the autism spectrum. We discussed the following questions:
  1. Describe what has been your most important dream.
  2. Who has been the person or people that have been important in supporting you to realize your dream?
  3. Do you think your dream is a path or is the dream the final end of the path?
  4. Do you feel like you fully realized your dream?
  5. What have been some things, other than people, that have helped you to realize your dream? Have you ever used tools like PATH (Planning Alternative Tomorrows with Hope) or MAP (Making Action Plans)?
  6. What barriers have prevented you from realizing your dream? Have you overcome these challenges?
  7. If someone asks how to realize their dream or support another person in achieving theirs, what would you tell them? What would you tell them is the first step?

These questions sparked interesting discussions; therefore, I am sharing some of my answers in hopes that it will motivate others to go after their own dreams and aspirations:
 
My dream has had many parts to it. The ultimate goal is to buy my own home and be independent with no supports from the government. I went to graduate school and got a Master’s Degree in Special Education, with a focus on Autism. After graduation, I got a job where I needed a car so I bought my first car. Five years later, I landed a job in Washington DC, as Co-Director of the Autism NOW Center, which has afforded me the opportunity to get off of all my government supports, such as SSI and Medicaid. My next goal is to be able to move out on my own, buy a house and be able to pay a mortgage.
 
The people who have been the most supportive in helping me to realize my dreams are my parents, my friends and colleagues at the Autism Training Center and the Developmental Disability Council, and my good friend Kent, the person who introduced me to autism and Asperger’s syndrome. If it weren’t for Kent, I never would have realized I was on the spectrum and never would have come as far as I have in the last 10 years.
 
The dream is a path, a never ending circle. For me, the next step is owning my home debt free. I have not fully realized my entire dream yet. I still have a few transition steps to work on before I can make my dream a reality. 
 
Continue reading Living My Dream: A Panel Discussion

I Am Married Too

By Michael Higginbotham

The following excerpt is from “Relationships and Sexuality,” a handbook written by self-advocates that aims to take readers on a thought-provoking journey about relationships and sexuality.

I have been married for more than half of my life. My wife has been such an integral part of who I am and how I navigate life that I can’t really imagine the world without her. I hear that people on the spectrum don’t know how to have or maintain relationships with others. We are told regularly that we lack empathy, theory of mind, and the ability or desire to maintain social relationships. For me this just doesn’t hold true, and it certainly has not been my experience.

I am reminded of the words of Jim Sinclair, “You try to relate to your autistic child, and the child doesn’t respond. He doesn’t see you; you can’t reach her; there’s no getting through. That’s the hardest thing to deal with, isn’t it? The only thing is, it isn’t true.” These same words apply to the husband and wife dynamic as much as it relates to the parent and child. My wife complains at times…she knows that my aversion to human contact can be difficult for me but at the same time I know that she needs to have that contact in order to feel the love that I know we share. The lack of understanding really comes from those around us that don’t understand or even think they understand what Autism is and how it manifests itself by making comments like, “But you seem so normal”—such disappointing words to hear and more importantly to feel. That is the ironic part of the world’s preconceived notions of what a marriage is and should be…

We are not normal in the traditional sense, that much is probably true. However, few people have had the length of a relationship that we have had. I have known my wife longer than I have not known her. We have been together as a team for over half of our lives. At times I am asked why it is that we have been together for so long. I am unsure at times how to answer that question. I think to myself that I have agreed to be with her for the rest of my life and that commitment means something to me. But I think the question that people really want an answer to is not how long but how is it that we have been together for so long and we are still happy. I can equate that to the simplest of things; my wife is my best friend. The interesting part of this statement is that if I were to listen to stereotypes and live up to the expectations of the larger population, then I would have no such thing as a best friend and certainly not be married.
 

Autism NOW Webinars

Service Implications of the DSM-5 for People with Autism
May 28 from 2:00 – 3:30pm EST
Register now
 

Registration Now Open for The Arc’s National Convention

Make your plans now to join old friends and make new ones at The Arc’s annual gathering of more than 700 individuals with intellectual and developmental disabilities, families, professionals, experts in the field and special guests. This year, we’re headed to the East Side of Seattle August 3-5 and you’re invited! Registration is now open, so take advantage of early bird discounts. Get more details at www.thearc.org/convention.
 

Amy’s Book Corner

The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband, by David Finch

At some point in nearly every marriage, a wife finds herself asking, “what is wrong with my husband?!” In David Finch’s case, this turns out to be an apt question. Five years after he married Kristen, the love of his life, they learn that he has Asperger’s syndrome. The diagnosis explains David’s ever-growing list of quirks and compulsions, but it doesn’t make him any easier to live with. Determined to change, David sets out to understand Asperger’s syndrome and learn to be a better husband with an endearing yet hilarious zeal. Google offers a free preview of this book.
 

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The Arc
The Autism NOW Center is a national initiative of The Arc.
 
The Administration on Intellectual and Developmental Disabilities