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In Their Own Words – I Have Autism

May 29, 2010 85 comments

I have autism.  I hold only a few similarities to the character in “Rain Man.” When I am out on the playground, never say to my mother, “I would have never guessed that; he looks so normal”  The face of autism is not a defined one.

I have autism.  This does not mean I am deaf, nor does it mean I can’t understand your words. When cruel things are said, it hurts just like it would anyone else. Sometimes even more, as I am very sensitive.

I have autism. I am not blind.  When you stare at me, point, and whisper – I don’t like it.  I sometimes cannot control my emotions; however, I still can see you.

I have autism.  I am not spoiled, undisciplined, or disrespectful intentionally. Don’t tell my parents I just need to be smacked, as that would never work and I smack back!  All I know is if I am being hurt I must defend myself.

I have autism. This does not mean I am mentally delayed. I am very smart. I may focus on only a few things, but I have become an expert on them.

I have autism. Don’t think I am not capable of love or am emotionally detached from the world around me. I am very close to my family and sometimes need to be hugged. I do have the capacity to care. Especially if I see someone else being hurt or teased.

I have autism. I will line things up on the floor in my room in perfect order. This may be strange, but to me it is contentment. I can only relax if things are in sync.

I have autism. Which means I am supersensitive to sounds; I hear all of them. Even the smallest of sounds. When I get overloaded with too many sounds at once, It is hard to cope and I must step away and be alone. This does not mean I can’t handle the world, I just have to have more time to tune out as I hear more than everyone.

I have autism. I live by schedules. This is one of the ways I have found to cope with the chaos around me. Knowing what is going to happen at a certain time each day helps me prepare for transitions. That is why it is difficult for me to deal with a schedule change. I have to have order to obtain peace.

I have autism. It is very important for people to mean what they say  That is why joking with me is never understood. Things are black and white to me, like a set schedule.  If you say you are going to turn blue in five minutes, I expect you to do so.

So remember, having autism does not mean I am blind, retarded, unresponsive, incapable of love, or unable to function in the real world.  I am unique and gifted because I have found a way to coexist within two very separate worlds. Take a moment to think about how many of us have difficulty within just the one world we live, now imagine juggling two. This is something I have learned to do. So forgive me if at times I have trouble separating the two, again I am only human.

I often hear people say to my mom, “It must be so hard for you” – no one ever says that to me. In fact, no one expects me to understand or respond because of the face society has painted autism to be. I do not know all that autism is, but I know who I am. I am special, and cherished. Almost like a superhero I was set aside to have these unique abilities. They are not a disability. They are not something to fear.  In a way they are magical. I have unlocked parts of my brain that others cannot.

When you look at me, don’t look at me with sadness or feel sorry for me. Look at me with wonderment and I will amaze you every time.

This “In Their Own Words” essay is written by Tonya Procor, a loving mother of a son with autism.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Autism in the News – Friday, 05.28.10

May 28, 2010 2 comments

Gay Tompkins Honored By Thompson Foundation For Autism (St. Louis, Mo.)
The Thompson Foundation for Autism recognized former Affton School District superintendent and autism advocate Gay Tompkins with the Foundation’s Distinguished Service Award. Read more.

Immune System Troubles Could Spark Behavior Woes (HealthDay News)
In the first scientific illustration of exactly how some psychiatric illnesses might be linked to an immune system gone awry, researchers report they cured mice of an obsessive-compulsive condition known as “hair-pulling disorder” by tweaking the rodents’ immune systems. Read more.

New Equipment Helps Law Enforcement Locate Missing People (Panama, Fla.)
The Panama City Police Department has purchased Project Lifesaver equipment using grant money. The set of equipment can track anyone who is a participant in the program if they are wearing the transmitter. Read more.

Compulsive behaviour in mice cured by bone marrow transplant (Science Centric)
Scientists earlier found that mice missing one of a group of core developmental genes known as the Hox genes developed an odd and rather unexpected pathology: the mutant animals groomed themselves compulsively to the point that they were removing their own hair and leaving self-inflicted open sores on their skin. Now, they’ve found a surprising connection between the Hoxb8 gene and the behaviour that looks an awful lot like that of people with an obsessive compulsive spectrum disorder (OCD). Read more.

Longtime PSD volunteer preps for new activities (Colo.)
During the past 15 years, Don Fronk filled his days watching preschool-aged children rub peanut butter on his sleeves and helping them get over their fears. Read more.

Seniors look ahead — and behind (Richmond, Ind.)
As high school graduation season begins this week in the Richmond area, Susan Golliher is savoring the time she has left with her three boys before they embark on the next chapter of their lives. Read more.

American Image Awards Honor Autism Speaks Co-founders

On Wednesday, May 26, Autism Speaks Co-founders, Suzanne and Bob Wright, were honored at the 32nd Annual American Apparel and Footwear Association (AAFA) American Image Awards in New York City.  The Wrights received the 2010 Humanitarian Award for their work in promoting autism research, science, awareness and advocacy. Autism Speaks was the AAFA’s charity partner of choice, receiving 40% of the evening’s proceeds.

The event was hosted by Tinsley Mortimer and paid tribute to fellow honorees Li &  Fung, Steve Madden, John Bartlett, Fern Mallis, Gap Inc., and Shopbop.com. Some of the evening’s presenters included Joe Zee, Robert Verdi, Cynthia Rowley, Mary-Kate and Ashley Olsen, and Tom Brokaw. Other notables in attendance included Alex McCord and Simon van Kempen of “The Real Housewives of New York City” and Whitney Port and Roxy Olin from MTV’s hit show, “The City.”

Check out a photo gallery on Guest of a Guest.


AAFA’s American Image Awards Raises $700K for Autism

Autism in the News – Thursday, 05.27.10

Second Chance Prom helps special needs kids come in first (Egg Harbor City, N.J.)
It started as “kind of a gag,” morning radio personality Eddie Davis said Saturday, May 22 at his station’s Lite Rock 96.9 WFPG Second Chance Prom at Renault Winery. Read more.

Laguna Beach students highlight heroes (Laguna Beach, Calif.)
Heroes aren’t just comic book characters, according to some young Laguna Beach filmmakers. Locals will learn about the heroes in their neighborhoods at the third My Hero Laguna Fest 7 p.m. Thursday at Seven Degrees. Many of the films come from students at Laguna Beach schools, where classes work with the My Hero Project. Since 1995, the nonprofit group, founded by three Laguna Beach mothers, has worked to get more positive role models into the media. In addition to sponsoring an international film festival in the fall, the group works with schools around the world and runs a website that showcases heroes. Read more.

WCU grad students help children with autism in local community (Cullowhee, N.C.)
Graduate students from Western Carolina University’s communication sciences and disorders department worked with Julie Ogletree, a speech-language pathologist in Jackson County, to develop a social skills group for children with autism. Read more.

New book seeks to thwart bullying of those with autism (Autism Support Network)
As children with autism enter what can be the cruel social world of junior high years, the subject of bullying in the school shifts front and center as a topic of concern. Often these students can find themselves the targets of teasing and bullying for their seemingly eccentric behaviors or apparent ignorance of the social dynamics around them and reluctance to interact with their peers. Read more.

Prime-time television tackles autism (CNN)
In a scene from NBC’s “Parenthood,” two parents are attempting to get their 8-year-old son ready for school. The child insists on wearing a pirate costume to class, again. His father asks him to take it off so he won’t get teased. His mother says it’s OK, mainly so she can get him out the door on time. Read more.

Imagine! all the happy people (Longmont, Colo.)
Next week, Loren Hobart will move into a new home for developmentally disabled people. And he gets to do it with his two best friends. Read more.

Huron Valley Recreation offers special needs camps (Huron, Mich.)
Huron Valley Recreation and community Education will hold two summer camps focused on special needs children.  Read more.

New, Cool and Way More Portable PECS

May 27, 2010 15 comments

This post is by Sheila Sullivan. Sheila, a veteran member of the Autism Speaks awareness team, also manages the organization’s branding, merchandising and licensing. She has a tendency to get really excited about things that help people in the autism community directly and even more excited when people and companies step forward to help Autism Speaks fulfill its mission. You will be hearing more from Sheila, no doubt!

Necessity is the mother of invention, as the saying goes. The best ideas are often born from a need that isn’t met – and iPrompts®, from HandHold Adaptive, is one of them. When the inventors of this App for iPhone® and iPod Touch® learned that their son with autism, like many other children who struggle with developmental and language disabilities, greatly benefits from the structure and clarity provided by visual aids, they used picture-based schedules and choice boards to help him transition between activities, communicate his needs, and stay on task. However, they were frustrated by the tools available – printing and laminating pictures, losing plastic symbols magnets, transporting bulky notebooks – finding them unwieldy and not nearly as portable as they would like. They channeled their frustration into designing something better. The result: HandHold Adaptive and its first product, iPrompts®, were born.

iPrompts® is, in essence, PECS for iPhone® and iPod Touch® users – caregivers, parents, teachers – that makes use of technologies available to make this previously bulky, unwieldy process portable and simple.  HandHold Adaptive is donating 10% of the sales of the iPrompts® app to Autism Speaks.

Human Genetics at IMFAR

May 27, 2010 4 comments

Guest staff blogger: Vlad Kustanovich, Ph.D.

Genetic research is one of the exciting avenues of investigation that was highlighted at this year’s IMFAR meeting.  The section on human genetics started with a description of the largest study of autism twins to date. This study, described by Dr. Joachim Hallmayer, has concluded the data collection  phase and is beginning to shed new light on how much autism can be explained by genes and how much by environment.   Because identical twins share 100% of their DNA while fraternal twins share only approximately 50%, geneticists can compare the relative contribution of genes and environment, since it is assumed that for each twin pair, the environment is the same.  Clearly, both environment and genes are involved but this study may help to identify to what extent.

Dr. David Ledbetter described his effort to gather anonymous genetic information on chromosomal microarays from hundreds of thousands of patients with autism spectrum disorder and developmental delay.  He is doing this by forming partnerships with over 120 clinical labs throughout the U.S. Dr. Ledbetter, a world-reknown expert in cytogenetics, has the knowledge and respect of the scientific community to achieve the goal of creating data standards and pooling information to show which chromosomal changes are most often identified in these groups.   Deletions in regions on chromosomes 16 and 22 are identified consistently.  Although still rare, an understanding of altered genes in these regions may lead us to identify new subtypes of autism.

Other talks focused on studies of brain and face development (since these happen at the same time) in families with autism from the Autism Genetic Resource Exchange, an update from the Autism Genome Project, and a fascinating talk from Sun-Chiao Chang (working with Dr. Susan Santangelo) on sex-specific effects in autism spectrum disorder.   Ms. Chang identified several genes which seem to have an effect only in males, possibly helping to explain the common finding that there are four times as many males with autism as there females.

To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php.

Soccer Day 5K Helps Raise Autism Awareness

May 26, 2010 2 comments

On May 15, the Kansas City Wizards hosted their first 5K to benefit Autism Speaks. Among the many runners were a class of students , who have autism, from Gardner Edgerton High School (GEHS) in Gardner, Kan., who trained for a month and a half. The students, featured in this video, wore the number “304,” which is their classroom number. Following the race, the same lucky students did the coin toss and presented medals to the race winners at the Wizards’ autism awareness game.

Thank you to all the runners, volunteers, Ponch from Mix 93.3, Jimmy Conrad with the KC Wizards, Missouri Rep. Jason Grill and especially the Kansas City Wizards organization for hosting this event to support the Kansas City autism community.

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