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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

April Prism

Self-Advocates, Parents and Professionals: Submit Your Stories

Autism Awareness Month is coming to an end, and we would like to thank those of you who have taken part in our online conversations throughout the month. However, it’s important that these conversations continue. One way to promote autism awareness after the month of April is by sharing your knowledge and experiences with us. The Center is now accepting guest blog posts for potential publishing on the Autism NOW Center website. Guest blog posts published by the Autism NOW Center may also be highlighted in Prism, our monthly e-newsletter. The Autism NOW Center accepts general interest stories, how-tos and tips about living with autism and other developmental disabilities. Please visit our website for more information and specific guidelines. If you have any questions, please contact Phuong Nguyen.

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. Taking a cue from our tech-savvy host city, this year’s event is all about innovation! You’ll be treated to technology demonstrations from some of the top names in the communications and technology fields who are constantly coming up with new ways to help people live better, more connected lives. Plus, we have sessions planned on supporting self-advocacy, innovations in family support, bullying, building our grassroots network, and cultural diversity among others. Also, special events such as self-advocate and sibling meet and greets, a night of improv comedy and dancing and The Arc & Sprout National Film Festival are sure to make this event unforgettable. Get more details at www.thearc.org/convention and register today.

Bullying: Then and Now - A Personal Perspective

by Amy Goodman
Co-Director, Autism NOW Center


Benny Hill — you might say what does that have to do with autism spectrum disorder (ASD) and bullying? Let me explain. First you need to know who Benny Hill was — Alfred Hawthorne Hill, better known by his stage name Benny Hill, was a British actor and comedian. He played silly outrageous characters, one of which talked out loud to himself. Some students thought it was funny to tease you by calling you Benny Hill all the time. They assume because Benny Hill talks out loud to himself that you are just like him— crazy, a lunatic, insane, or mentally deficient. All of which isn’t true at all. This name calling goes on for more than two years.

The bullying has taken its toll… you become an emotionally unstable individual who has no clue who you are, what you believe, or what you want to do in life. Add onto that, that you have trouble making friends and have no idea how to be social. You cry all the time and have melt-downs so bad that no one is able to console you. You are 12 or 13 years old, in middle school with no idea that you have a disability at all. You don’t know why you talk out loud to yourself or why you are unable to control your crying. You are emotionally immature, have no self-confidence, and no self-esteem. As the years go by, in high school in another state, some of the same fears and feelings of not being liked, no self-esteem, knowing something is different but having no idea it is ASD, no self-worth, and being lonely come back to haunt you all over again. This time the teasing is of a different nature. It is more intense, and more of a sexual nature. This time, the issues of adolescence are mixed in. Dating, feelings, emotions, figuring out who you are, and being stuck in a world that no one seems to understand. You are presently there, but emotionally you are a total mess. You have no idea how to handle situations, so you run and hide and try to escape reality. Continue reading Bullying: Then and Now.


My Definition of Autism

by Andrew Reinhardt

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?” Andrew Reinhardt is working on a Master’s degree in physical science and has a diagnosis of Asperger’s syndrome. Below is his personal definition of autism.
 
Being on the autism spectrum to me was at one point in time a defining characteristic of who I am. It is not anymore. I’ve largely grown out of needing to define myself in such terms. I am a very active individual, albeit not as active socially as I would like to be, but in terms of academics, work and family, I am very happy with my life and define who I am based on these parameters, and others. This has some advantages, since I’ve seen time and again that having a disability, any disability, is not typically smiled upon in the hiring process or beyond in this country. I’ve done best and even have tended to be hired more often when I learned to shut up and only open my mouth about having Asperger’s when it’s absolutely necessary. Since I can pass for an individual who is not on the spectrum, at least at this point in my life, I find that it is better to not bring up such issues at all and play the part of so-called normalcy.

But still, Asperger’s still affects me in highly negative ways, though it affected me in worse ways historically. I specifically avoid shopping at malls, or anywhere for that matter unless it’s grocery shopping. I prefer to avoid eating out to ordering out. These are habits born out of a general social anxiety, as well as several issues such as what to do with eye contact in crowds, the noise levels, the lighting, so on and so forth. As bad as it is now, it was worse to the point of breaking out in hives during a full blown panic attack before.

This is progress, even if it doesn’t seem like it at times. Historically, I’ve faced several problems worse than this, such as a severe fear of, and sensory problems with, insects, that caused me to run away from them to the point of running in front of cars at times. I also was self-injurious at times when I thought I did something particularly bad, though in hindsight I’m not sure I’ve ever done anything particularly bad in my life. All that said, though being on the spectrum has been a great bane to me throughout the years, it also has provided some good things to my life, for instance my mathematical skills, my analytical skills, and the drive to be more than I am today, the last of which is probably the most important because I’ve met individuals who have the skill, but lack the drive to do anything with it. I contend that because of my life on the spectrum, particularly the hardships it’s caused, I’ve done better as an adult than I otherwise would have.
 
For more stories and posts from self-advocates, visit the Autism NOW blog.

Autism NOW Webinars

Transportation Options and Accommodations for Individuals with Disabilities
April 30th from 2:00 – 3:30 PM EST
Register now

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


HealthMeet Webinars

The President's Committee for People with Intellectual Disabilities Report and Recommendations for Managed Long-Term Services and Supports
May 1st from 2:00 - 3:00pm EST
Register now

Adults with Intellectual and Developmental Disabilities and Dementia; Assessment and Healthcare Practices
May 15th – 2:00pm – 3:00pm EST
Register now

Using Smart Technology and the Cloud to Make Telehealth Accessible for People with I/DD
May 22, 2:00-3:00pm EST
Register now

Amy's Book Corner

Do-Si-Do With Autism
Author: Sarah Stup


Do-Si-Do with Autism introduces children to the importance and joy of building meaningful relationships with those who have autism and other developmental disabilities. The story revolves around Taylor, the turtle with autism, who sheds light on what it is like to feel pain from the overwhelming movements and sounds around him. His feelings are especially pronounced on square dance day at school. Filled with dread, he retreats to the sidelines and finds solace in his beloved books. To his surprise, however, his classmates follow his lead and, in doing so, begin to focus less on their differences and more on all they have in common.


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