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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.

In Their Own Words – Windows into Phillip’s World

May 26, 2010 21 comments

Phillip is my older brother.

Usually an older sibling looks after younger ones, but all my life I have cared for my brother, who has lived away from home since he was six years old.

Phillip is severely autistic. He is able to dress himself and enjoys looking good. He is unfailingly kind, endearing and loves to be helpful and busy.

But people with autism face real challenges in the areas of communication and social skills—and Phillip is no exception. He doesn’t speak. He understands when you talk to him about subjects with which he is familiar—although his responses can seem disconnected at times.

He communicates through a limited knowledge of sign language and sometimes uses a book of symbols, pointing to images that express his feelings and needs.

Like others who suffer with autism, Phillip has Obsessive Compulsive Disorder (OCD). When, many years ago, he was given the job of marking off the current day on the school’s calendar, it became a necessary daily ritual which he carried out even if he interrupted meetings taking place. Realizing that marking calendars was one of Phillip’s obsessive needs, I gave him several pocket calendars so he can now mark off each day with focused intensity.

An inspired educator once introduced Phillip to needlepoint. In the 21st century, needlepoint, a form of canvas stitchery, is often regarded as a tedious craft with anachronistic overtones. This is not surprising, considering that it goes back to the small, slanted stitches of Egyptian tent-makers thousands of years ago.

Since Phillip is meticulous and revels in repetitive tasks, he immediately immersed himself in this craft. I am an abstract painter and we often collaborate on projects. In fact, our creative collaboration provides a very special connection between our worlds: I design—creating colorful images on a needlepoint canvas—and Phillip stitches in a cornucopia of colors.

Needlepoint gives him a sense of security in and control over his limited universe. He feels empowered in sharing his latest creations and, like all artists, he is very proud of them. I would like to think his efforts would have made famed Bauhaus teachers and color theorists, Johannes Itten and Joseph Albers, proud as well!

Another window into Phillip’s world is a method developed in Australia in 1977 called “facilitated communication.” Phillip can communicate by typing with one finger as a trained facilitator holds his wrists in a comfortable leverage position.

There is some controversy about facilitated communication. Those who support this method believe that it reveals a literacy and a previously undisclosed, higher intellectual functioning in those with autism, and that autistic people exhibit a capacity for symbolic communication.

However, critics claim that the facilitator may influence the response. To avoid this, our family would ask Phillip questions to which the facilitator did not know the answers. Since his responses were accurate, we knew that the facilitator could not be manipulating Phillip’s responses.

Although Phillip spells phonetically, what amazed us was that they were organized sentences written in a rather formal structure (e.g. “I am very fortunate to have Lena as my sister. She is my best friend.”) Perhaps most importantly, this gave us an awareness of the depth of Phillip’s understanding. We already knew, from personal observations, that he was capable of conceptual organization and were relieved that Phillip, in this small way, could finally make his voice heard in the world.

Sadly, his voice is not always heard. Many people feel uncomfortable around individuals who are mentally challenged, and I have become aware that families who struggle with the challenge of disabilities face social isolation. People may perfunctorily inquire about Phillip but then quickly move on to another subject; very few go beyond polite questions to discover that Phillip is a person with strengths and weaknesses that extend beyond the label of autism.

Still, there are friends, who not only acknowledge Phillip but respect him and take note of his interests. They often send him cards, yarn and calendars—gestures of thoughtfulness that deeply move me.

Phillip is unaware of the great influence he has exerted on my own life. Through helping him develop skills and observing his creative process, I have developed patience, endurance and a depth of compassion I never knew I possessed as well as an acceptance of both the limitations and vast possibilities inherent in each of us. All of these qualities play such an important role in my personal and professional relationships.

And while I sometimes wish I could look inside his brain to understand the complexity of his world, I think of Phillip, my little older brother, as my personal gift. But like Phillip, I can’t put what he means to me into words.

This article first appeared on Guidepost.com and is reprinted here with permission.

This “In Their Own Words” essay is written by Lena Rivkin of Los Angeles, Calif.

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- Wednesday, 05.26.10

May 26, 2010 1 comment

Researcher Links Autism, Testosterone (Canada)
Higher testosterone levels in unborn babies can lead to permanent changes in the brain that contribute to the development of autistic traits, new research suggests. Read more.

Making Life of the Handicapped Comfortable (Russia)
Russia plans to introduce integrated nurseries, schools and other establishments where ordinary children will study together with children with mental retardation. The healthy children in these facilities start understanding that the “handicapped” does not mean “bad”. At the same time, the handicapped have an opportunity to communicate in full. Such an integrated community teaches both humanism and tolerance. Read more.

Clegg Backtracks on McKinnon Extradition Claims (TechEye)
Lib Dem leader Nick Clegg has started to do a U Turn on plans to save Gary McKinnon from extradition. For a few brief minutes it looked like the new government was going to stand up to the United States and not extradite Gary McKinnon. Read more.

Star-Studded Award Show To Benefit Autism Speaks Tonight (Look to the Stars)
Journalist Tom Brokaw will be a presenter at tonight’s Amerian Image Awards in New York,  an event that will raise funds for Autism Speaks. Read more.

Mom Unhappy with Autism Therapy (Canada)
A mother of three young children says her family is one of many that has been let down by Newfoundland’s health care system. Read more.

Parent Power Forces Concession on Plans to Move Respite Care (ThisisExeter)
Parents will be given more time to be consulted on plans to move respite care for disabled children out of the city. Health bosses have stressed they are listening to worried city parents over the proposals for youngsters with autism and learning difficulties who receive care at Meadowpark Centre in Shillingford Abbot, near Alphington, being transferred to units more than 20 miles away. Read more.

Psychologist says former Victor autistic student OK to stand trial (Rochester, N.Y.)
A court-appointed psychologist told Victor Town Justice Edward M. Lyng Jr. Monday that Jarred Crawford is competent to face charges of disorderly conduct and resisting arrest. Read more.

SENSE Theatre, Makes Sense to Me (Part 2)

May 26, 2010 1 comment

This guest post is by Autism Speaks Blog contributor Kristen Byrne. Kristen is the proud mom of two sons with autism. She is also one of the founding co-chairs of the Sacramento Walk Now for Autism Speaks event. This is the second half of the ‘SENSE Theatre, Makes Sense to Me’ post. You can read the first part here: http://blog.autismspeaks.org/2010/05/25/sense-theatre/.

Opening night, June 12

I can’t recall if there were any mistakes that night, but the reviews suggested that it was perfection in action. I felt very much in a daze. Was it really happening? A mild panic struck me every five minutes; after all of their hard work, would they walk away from this experience and have fond memories? Or would they only remember the long hours spent on the road to get to and from rehearsal and the extra demands placed on them? Whatever would happen that night was already set in motion has the house lights went out and the bright stage lights glowed. Here we go, for better or worse. Looking back now I realize how ridiculously tense I was about the whole thing. I should confess that I learned a lot from the experience, perhaps even more than the boys did.

The Gala Show Third performance, June 13

With two sold out performances under their belts, the cast would take to the stage for the second time in one day. After the matinee performance we drove to my parents’ house; which wasn’t far from the theatre. We were greeted with a warm welcome and much needed sustenance. I wasn’t sure that doing two shows in one day was asking too much. In addition it would be the first show both my husband and I would be sitting in the audience instead of helping the boys backstage. We had front row seats, stage left. After the first song Ethan spotted me in the audience; he ran off stage into the audience and with his huge partially toothless grin he said, “Mom, I did it!” I felt as if the wind was knocked out of me. I held back tears of joy just then because I didn’t want to be blinded during the rest of the show, but I bawled my eyes out later that night. Ethan did do it, he was on stage, singing and acting and dancing and having fun! He was proud of himself, he felt good about himself and I felt good about the world again, about the future. After a quick hug, he ran back on stage and continued on with the show. We refrained from uttering the phrase “break a leg” which would have horrified Devan & Ethan both taking it for its literal meaning, but I was sure in the true spirit of the theatre, they broke both legs!

Post SENSE Theatre Jungle Book Kids

A short while after the last show we found ourselves turning in the last of the cortisol samples, completing post evaluations and going in for the post-show blood draws for the research portion of SENSE Theatre. Was that going to be it? It wasn’t clear where SENSE Theatre would go from here. Funding for SENSE Theatre wasn’t there; this was run on a hope, a prayer and the generosity of Dr. Corbett, her husband Ed Bazel, and some sponsors. Fortunately through the help of Amy Lewis & Ed Crane at KFBK 1530 News Talk morning show, they interviewed Dr. Corbett who was looking for a new theatre to call home for SENSE. Dr. Corbett received a call the same day as the interview from Brent Null at Magic Circle Theatre in Roseville and the rest is history.

Anything worth doing is usually hard work

The success of SENSE Theatre comes from a number of parts all working together. One part is the kindness of the SENSE buddies and their unwavering regard for Devan & Ethan and all of the SENSE participants. The SENSE buddies are remarkable young women & men and have given so much back to the autism community.

Another part is the amazing brain & heart behind SENSE Theatre, Dr. Corbett. We respect & appreciate Dr. Corbett’s vision for SENSE Theatre, but it is not only her vision, it is her passion about this project and her love of the kids. With every struggle, she was there with a strategy and a path to success. Dr. Corbett’s helped to unlock the dreams we’d once packed away with the boys’ diagnosis four years ago. She’s inspired us to expect great things; something most parents take for granted, but we cherish the opportunity each day.

The tagline for SENSE Theatre is: A stage of hope for children with autism – for us, it is as if the words were lifted off the page, put into action and made a reality. As parents learning through this experience we’ve been able to allow our Hope to grow and see that with patience, kindness, respectful encouragement and understanding, children like Devan & Ethan fit just perfectly into this world. Thank you SENSE Theatre; we’ll always remember this experience with great affection and warm memories.

A grateful mom,

Kristen Byrne

About SENSE Theatre

SENSE Theatre – in collaboration with Magic Circle in Roseville, California – are now off to see the Wizard in their new musical production of Wizard of Oz. SENSE Theatre is a unique theatrical intervention research program designed to improve the social and emotional functioning of children with autism and related neurodevelopment disorders. SENSE Theatre has partnered with Magic Circle Theatre, to put 15 children with autism spectrum disorders on the stage with 30 youth actors from the Master Class productions, who serve as peer models and fellow cast members. Founder, Blythe Corbett, Ph.D. exclaims “We are grateful for the support of Magic Circle who is providing the stage, production costs and hospitality to bring the mission of SENSE Theatre center stage, which we hope to be the first of many collaborative productions.” In her “day job” – Corbett, is an associate professor at the University of California, Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute. Along with the SENSE Lab – her team aims to show how art and science can merge to create an ideal environment to learn how to communicate, socialize and express themselves. For more information please visit SENSE Theatre.

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