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Archive for November, 2010

Autism in the News – Wednesday, 11.17.10

November 17, 2010 Leave a comment

Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D., Named a Scientific Hero and “Rock Star of Science” by Geoffrey Beene Gives Back® and GQ Magazine (New York, N.Y.)
Autism Speaks, the nation’s leading autism science and advocacy organization, is pleased to announce that Geraldine Dawson, Ph.D., its chief science officer, has been named a “Rock Star of Science” by Geoffrey Beene Gives Back® and GQ Magazine who have joined forces, along with the Entertainment Industry Foundation/SU2C, to bring together eight celebrity musicians–rock icon Debbie Harry (Blondie), Bret Michaels, Timbaland, Keri Hilson, Heart (Anne and Nancy Wilson), Jay Sean and B.o.B — and seventeen of the nation’s top medical researchers, including Dr. Dawson as well as two Nobel Laureates. Read more.

Hamilton doctor with focus on autism will be part of new Ontario Brain Institute (Canada)
A Hamilton doctor working on trying to unlock the secrets of autism will be part of the new Ontario Brain Institute being established by the McGuinty government. Read more.

Family, district clash over service dog at school (Golden Gate Estates, Fla.)
The family of an autistic Florida boy is fighting the Collier County School District over whether he can bring a service dog to school. Read more.

L.I.F.E. center helps Valley mom with autistic son (Gilbert, Ariz.)
Autism seems to be getting much more attention recently as more cases are diagnosed in young children. According to theCenters for Disease Control and Prevention , 1 in 110 children have an Autism Spectrum Disorder. The majority of those cases are boys. Read more.

Autism Speaks U launches Northwestern chapter (North by Northwestern)
Northwestern’s Autism Speaks U chapter, a student group hoping to raise awareness for the disorder, held its opening meeting Tuesday. Read more.

The Blind Side

November 16, 2010 7 comments

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.

As a college student, I can definitely tell you that I go through my own long list of challenges. As someone with pervasive development disorder- not otherwise specified (PDD-NOS), a form of autism, those challenges have seemed a bit longer and harder to deal with in comparison to my peers. I’ve always been that individual who, when I see a problem, I wanted it fixed. Not that all problems can be fixed, but if I was in a situation where I know I could change something, I would be the person who did something about it. Recently I have seen myself go through a great deal of struggles both in friendships and work-related incidents because of my difficulty in not seeing the views of others from their perspective. My “Blind Side” as I’ve called it, has put me in some of the most difficult struggles throughout my college experience.

Many people have different names for this theory such as “Mind Blindness” and “Tunnel Vision.” Overall it can be defined as the difficulty of being unaware of what others are thinking. Basically, not understanding the perspective of someone else, not being able to put yourself in their shoes, not being empathetic.  This has led some of my peers to believe that I’m self centered, that regardless of what I’m doing, it’s about me and everyone else has to live with it. I can remember from a self evaluation during my junior year by one of my faculty advisors, I was called out for being “disrespectful to others feelings” and “not a team player.”  Sophomore year my Resident Director where I was a Resident Assistant called me out “for being stuck” and for “wanting to do things in the same manner.” On the other hand these experiences glaringly pointed out, that although I have raised the awareness on my campus of what autism is, and put a face on what a student with autism looks like, many people haven’t a clue of what it entails or how it manifests or affects students. I’ve never used my disability as a scapegoat for whatever tendencies I have or may go through but what do you do?  Follow my own advice? Autism is never a disability unless you let it become one. I take criticism as an indication of what I could work on to become stronger as a person, but in this situation I’ve never felt so blind.

I can’t see where I’m going and I keep going through walls, regardless if I go left, regardless if I go right, regardless if I just go straight down the middle, that wall is hitting me as hard as I’m hitting it. The problem with hitting these walls is that even when you pick yourself up, you still have to go through the pain for making those first few mistakes. Now, if you hit enough of these walls, why would you even consider going through the same pain regardless of how sweet it would be to break through them.

I may be blind for a little while longer, but I won’t back down despite the limitations. They told Michael Jordan he couldn’t fly and he did. They told Jackie Robinson he would never play major league baseball and he did. Although these seem like extreme examples, we all need those to inspire us to be the best we can be. To help myself moving forward I have mainly asked my peers to communicate. I’m a very detailed oriented person so whenever I get feedback, I like to write it down and take time to reflect on what it truly means and how I can go about a positive outcome. Frankly, regardless if I have a blind side, everyone has those “blind spots,” which if no one ever gave them advice on they may never grow. I’m far from perfect but I’m more than less because I’m here, doing what I need to do to better myself and hopefully through these blogs, helping others as well.

(This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to this post I can be reached at kerry.magro@autismspeaks.org.)

Autism in the News – Tuesday, 10.16.10

November 16, 2010 Leave a comment

For Teens With Autism, Handwriting Problems May Persist (HealthDay)
Poor handwriting among children with autism tends to persist well into the teen years, a new study finds. Read more.

Children with autism get help from therapy dogs (NEXT)
Shadow, a black Labrador retriever, knows how to interact with people without overreacting to them – a necessity for a well-trained therapy dog, said her owner and handler, Ani Shaker. Considered “bombproof,” meaning she will remain calm in nearly any situation, Shadow, and Shaker, volunteer at the Anderson Center for Autism in Staatsburg, N.Y., in the Hudson Valley north of New York City. Read more.

Autism Assisted Living Center Sparks Debate in Milton (11 Alive)
A city council meeting Monday night became the center of a hot-button debate about the treatment of those with autism. Read more.

Children with autism practice traveling on ‘mock’ flights (Philadelphia Inquirer)
At 8 p.m. Saturday, Southwest Airlines Flight 2149 was poised to push back from the gate. Flight attendants gave fasten-seat-belt instructions, and First Officer Peter Hayes announced, “There’s 25 minutes of flight time until we touch down in Philadelphia.” Read more.

Alberta needs strategy for autism (Canada)
The figures for autism can be startling and its impact is unprecedented. Current precedence figures for autism identify that around one per cent of the population have a condition somewhere on the autistic spectrum. By applying the one in 100 figure, it can be estimated that more than 19,000 people in Alberta have autism. Together with their families, they make up over 57,000 people whose lives are directly touched by autism every day. Read more.

Autism in the News – Monday, 11.15.10

November 15, 2010 1 comment

Adults with autism face a vast wasteland without opportunities (Edmonton Journal)
A few weeks before my son finished high school, I dreamt he died. It was a terrifying dream, but it didn’t take long to decipher its meaning. You see, my son has autism. The dream laid bare my deepest fears that there would be no life he could participate in once he left school. Read more.

Ontario puts up $15-million to create cutting-edge brain institute (Canada)
The Ontario government is providing start-up funding to create a leading-edge research centre that will house the province’s top brain researchers and turn health-care discoveries into commercial products to help those with neurological conditions. Read more.

Dictrict 86 Tackles Bullying (Hinsdale, Ill.)
School District 86 is preparing to launch a districtwide initiative to identify, prevent and address bullying. The district’s plans will coincide with its recognition of National Bullying Awareness Week, which is Nov. 15 – Nov. 19. Read more.

The hidden work of Oxfordshire’s young carers (UK)
“Young Carers are living right now, in your street, behind closed doors. Young Carers are hidden in that they are not identified. Read more.

So Much to Learn … So Little Time (The Caldswell Patch)
The N.J. Coalition for Inclusive Ministries (NJCIM) presented Caldwell College Professor Dr. Sharon Reeve, from the Applied Behavior Analysis Department, and graduate student Casi Healey with Religious Lay Leader awards. Read more.

Tune-In: Mitchel Musso Talks Autism Speaks Puzzlebuilder on Fox & Friends Monday

November 14, 2010 1 comment

Tune in alert! Be sure to tune in to Fox & Friends on Monday, November 15 at  7:45 a.m.  EST to see Mitchel Musso talk about National Philanthropy Day and Autism Speaks Puzzlebuilder!

To watch Mitchel Musso’s interview about raising autism awareness, click here!

Alpha Xi Delta AmaXIng Challenge

November 13, 2010 1 comment

In April 2009, Alpha Xi Delta, one of the nation’s oldest women’s fraternities, officially partnered with Autism Speaks. The sorority and its more than 135,000 members have worked tirelessly to raise autism awareness and financial support for Autism Speaks. For more about the philanthropic efforts of Alpha Xi Delta for Autism Speaks, head over to their official website.

During the week of September 27 through October 2, 2010, the Theta Rho Chapter of Alpha Xi Delta held their 1st Annual AmaXIng Challenge Autism Awareness week at California State University, San Marcos. In an effort to raise funds and awareness for Autism Speaks, the sisters of Theta Rho recruited 11 student organizations to compete for the title of Xi Champions. Throughout the week teams participated in various challenges including a “Penny Wars” team coin drive. Participants also recruited fellow students, staff, and faculty of CSUSM to participate in the Step It Up Campus Walk for Autism kickoff event and recruited family and friends to attend the Spaghetti Dinner and Basket Auction & Raffle Night, the last event of the week. Special Event Guests included Dr. Eloise Stiglitz, Vice President for Student Affairs, Dilcie Perez, Director of Student Life & Leadership, Julie Mattingly, CSUSM Greek Advisor, Kay Curry, Walk Chair for the San Diego Walk for Autism, Daniel Lightfoot, Director of the Autism Tissue Program and affiliate of Autism Speaks, and Krystal Langford and Michael Robinson, Autism Speaks representatives.  Congratulations to Team Lions, on your new title as the 2010 XI Champions!

Approximately 150 people participated in the Step It Up Campus Walk for Autism, and more than 300 guests attended the Spaghetti Dinner and Basket Auction & Raffle Night helping the Theta Rho Chapter of Alpha Xi Delta raise awareness and more than $6500.00 for Autism Speaks! On Saturday, October 2, 2010, Michelle Vogel and Donna Loya, event coordinators of Theta Rho’s AmaXIng Challenge Week of Autism Awareness presented Ms. Kay Curry, the San Diego Walk Chair and Mr. Brian Han, the Southern California Director for Autism Speaks a check for all the funds raised throughout the week of AmaXIng Challenge.

In addition to funds donated to Autism Speaks, through the efforts of many Theta Rho sisters, over $6,300.00 in goods and services were donated to the chapter to help them host a successful event. Donations included items such as drinks and lunches for all Step It Up Walk participants, gift certificates and gift baskets for the basket auction and raffle, and spaghetti, breadsticks and salad for the night of Spaghetti dinner. The support from the local community was excitingly overwhelming. Without the help of many generous donors, Theta Rho’s AmaXIng Challenge Week of Awareness event would not have been possible. The sisters of Theta Rho would like to thank their community supporters for their generosity, their time and their donations. Thank YOU, for helping the sisters of the Theta Rho chapter to realize their potential by making OUR event possible!


If you are a college student, or know someone that is, check out Autism Speaks U!

Autism Speaks U is a program designed to engage college students across the country in autism awareness, advocacy and fundraising efforts. Its new website offers a wide range of tools to empower students to establish Autism Speaks U chapters, organize events, and encourage their peers to get involved. College students, faculty and alumni can get involved with Autism Speaks U by visiting www.autismspeaks.org/u.

Autism in the News – Friday, 11.12.10

November 12, 2010 2 comments

Testing Autism Drugs in Human Brain Cells (Technology Review)
Autism is a highly complex disorder affecting one in every 110 children born in the United States. The disease’s genetic profile and behavioral symptoms fluctuate widely from case to case, and this variability has frustrated scientists’ efforts to identify effective treatments. A new study suggests that autism could eventually be a target for personalized treatment, targeted to a patient’s own neurons. Read more.

Child with autism connects with Kinect (msnbc.com)
John Yan reviews games for a site called Gaming Nexus, so despite his initial lack of enthusiasm in the Xbox 360 Kinect motion controller, he knew he’d have to buy one when they came out. After all, it wouldn’t be fair to dump all the Kinect reviews on his fellow writer, Chuck. Read more.

Parents say autistic boy was hurt at school (West Philadelphia, Penn.)
When Isaiah Hart, a first-grader with autism, came home from school Oct. 25 with a knot on his head and scratches around his neck, he told his parents that his teacher did it. Read more.

New Program for Students with Autism Reports Success (LaGrange, Ill.)
Staff of the Connections Program, for students with moderate to severe autism, reported at theLa Grange School District 102 Board of Education meeting Thursday on some of the challenges their students face, on several teaching methods and on success stories from the initiative, which is new this year. Read more.

Families affected by autism rally for support (Pocono Record)
At sell-out national autism conferences this year, the star has been Temple Grandin, Ph.D., an author and animal scientist. A recent HBO movie about her life was an Emmy winner, and she landed on Time magazine’s list of this year’s most influential people. Here’s how Grandin and others are pushing the dark mystery of autism into the spotlight to get early help for children. Read more.

In Their Own Words – Evan’s U2 Experience

November 11, 2010 19 comments

This “In Their Own Words” is by Denise Corbin-Kumar, of Fort Wayne, Indiana.  She is the mother of two boys, one, Evan, has been diagnosed with PDD-NOS, but his school’s testing showed Asperger Syndrome.

My younger son, Evan, has been a challenging child. He was diagnosed with Autism Spectrum Disorder when he was about 5, but up until that point, I just knew that something wasn’t quite right with that kid. He was hyper, into everything, and stubborn. But he was also very loving, very coordinated, and he loved music. When he couldn’t talk, he could sing, and U2 was one of Evan’s favorites.

Evan and U2 go way back. When Evan was 4 months old, the CD “All That You Can’t Leave Behind” was released. We bought it as we left my sister Jenni’s house in Meadville, PA and listened to it all of the way back to Indiana. Everyday when I’d drive Alex to school, I’d listen to that cd, come home singing the songs, and put Evan down for his afternoon nap. I noticed that the song “Walk On” was my choice song to sing, as I rocked him to sleep. As Evan got older, he’d fuss until I started singing that song to him. It seemed to calm him down, so I kept singing it to him everyday. It worked for both of us!

About a year later, the U2 Live in Boston DVD hit the shelves, and Evan loved it! He’d be sitting on the floor in front of the TV, sucking his thumb, and holding a cloth diaper in his hand, watching Bono. If I turned the TV off, or changed the channel, he’d cry and throw a fit! So, I just left it on, and we were both happy!

The song “Beautiful Day” became another one of Evan’s favorites at this time. At age 2, Evan could barely talk, but he’d hum along with the U2 songs, and sometimes he’d sing the end of the phrases. When I’d put him in his bed to sleep, we’d sing a lot of U2 songs, but “Beautiful Day” was one he’d always be happy to hear. I knew that I could use music to teach him how to communicate with people so he wasn’t so mad all of the time.

As U2 released more cd’s, Evan learned the songs and sang along. He didn’t refer to U2 as “U2″, but he called them “Bodo” and when he could speak more clearly, “Bono”. One of his favorite songs is “Out of Control”, and when Evan gets, as he calls it, “that wild feeling inside”, he’ll just sing out like Bono “I’m out of control!!”

We decided that we were going to take Evan to a U2 concert. I had worried for a long time that Evan wouldn’t be able to handle the loud noise of the concert or the huge crowd. Neither of these things were a problem for him. The stage was huge, with lights everywhere. Evan really, really LOVES lights! (He wants to turn them all on, all the time, everywhere we go!)

So, when the woman at the U2 concert said very loudly to her male companion “I’d NEVER bring my kid to a concert like this!!” I yelled at her “why not??” She looked away from me when she heard my reply. She wouldn’t understand anyway! In fact, there were quite a few kids at the concert, so I guess I’m not the only one who wanted to share a great night with my kids.

When U2 finally took the stage on Saturday night, Evan was just screaming “Bono, I’m here to see you” and waiving his hands with huge eyes and a wide smile on his face! The first song they sang is from the new cd, and Evan said “Mom, that’s the song I play on my cd player in my room at night”.  Then they played “Beautiful Day” and Evan could not contain his happiness any longer. He sang all of the words, and threw his hands into the air just like everyone else in the crowd. I guess I shouldn’t have worried about him not having a great time!

I watched Evan enjoy his favorite band, sometimes watching him more than the show on the stage. When they played the song “I’ll Go Crazy If I Don’t Go Crazy Tonight”, they changed it to a dance mix, and Evan was dancing around like he was at a disco. He enjoyed the show just as much as the old people like me who can still remember the first time we heard “Sunday Bloody Sunday” or “Pride.”

Evan kept looking up into the sky at the lights from the stage that were shooting beams of lights into the clouds. He looked at me and asked, “Mommy, is that heaven?” I didn’t know what he was talking about, so I said, “Where, up in the sky?” and Evan said, “No, everywhere here?” I didn’t know how to answer such a question, and I was a little choked up by it. I said, “Well, maybe it is to some people.” Evan replied, “Yeah, that’s what I thought!” I told my husband, Sam, what Evan had said and he just shook his head with a smile on his face and said “That Evan!”

So, when you ask Evan how he liked seeing Bono or how he liked the U2 concert, he’ll probably just say “it was good,” but don’t be fooled. He LOVED it!! Just before the show ended, as he was standing on my chair, leaning into my back so he didn’t fall while he was dancing, Evan put his arms around my neck and said “Mommy, I LOVE this concert! Thank you for bringing me to see Bono!”

It was completely worth the expensive tickets to hear those words, spoken so clearly into my ear, by a boy who not so long ago couldn’t talk, but could always sing the songs that he loved by his favorite band!

Evan dressed as Bono on Halloween

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. 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.

Is It Okay to Lose Your Cool?

November 11, 2010 10 comments

Tuesday’s Parenthood Episode explored a very real situation that many people in our community face to some degree or another. We would like to applaud Jason Katims and the cast for giving such an honest depiction of a real-life situation.

Here is the synopsis: Max, Adam and Zeek hop in the express checkout line at the supermarket. When Max notices the man in front of them has seven items over the allotted amount for the express line, he starts removing items from the man’s cart. The man gets irritated with Max and then Adam. Adam tries to manage the situation, asking Zeek to take Max back to the chip aisle to grab a few more bags while he talks to the man in line. When they walk away, Adam asks the man what his problem is. The man responds by telling Adam he’s sorry for him because his kid is clearly a retard. Without a second thought, Adam punches the guy in the face, knocking him straight to the ground. Adam, Zeek and Max return home with the groceries. Kristina can tell something’s wrong, but Adam says it’s nothing.

We want to hear from you. What do you make of this episode? Have you or someone you know, been in a similar situation? Please share your thoughts and stories.

Supported Employment: Assisting Individuals with Autism with Gaining and Maintaining Employment

November 11, 2010 1 comment

The following is a guest post by Dr. Paul Wehman, the Director for the Rehabilitation Research and Training Center at Virginia Commonwealth University (www.worksupport.com).

In the past, while many people with severe disabilities went to work in the community, many individuals with autism stayed at home or attended vocational workshops or day activity centers (Howlin 2004).  Fortunately, today there is a growing body of research that indicates that with the right type, level, and intensity of support individuals with autism can work in a variety of jobs in their communities.

Some individuals with autism face learning, social and behavioral challenges on a daily basis (Wehman, Datlow -Smith and Schall 2009) and may require intensive support to perform various activities at home, in school or in the community.  Likewise when pursuing work, and again when employment is secured, supports must be well thought out and implemented.  What support is needed will vary from one person to the next.   One approach that focuses on implementing individualized supports to assist an individual with autism with gaining and maintaining employment is supported employment.

In this highly individualized approach a vocational rehabilitation provider often known as an employment specialist or job coach, works closely with the job seeker and others who know the person best (ie. family members or caregivers) to discover an individual’s personal strengths and abilities. This information is then used to develop or create a job opportunity within a business that will capitalize on using the job seeker’s strengths. Once employed, the job coach facilitates and provides an array of workplace supports specifically designed to assist the new hire with performing the job and job related duties to meet the employer’s expectations. This may include the use of Applied Behavioral Analysis (ABA), a system based on behaviorist theories which, simply put, state that behaviors can be taught through a system of antecedents and consequences.  In addition, assistive technology may be introduced.  For instance, the employee may be taught to use some type of hand held assistive technology like a palm pilot to cue or monitor performance and enhance communication on the job.  Once the new hire is performing the job to the employer’s standards the job coach fades his or her presence off of the job site, and then provides ongoing long term support services, which are designed to proactively resolve any issues that may arise which could have a negative impact on job retention (Targett and Wehman 2009).

In addition to having access to high quality vocational support services, like supported employment, there must also be an unyielding focus on developing personal competencies in community environments, rather than in isolated classroom with students engaging in impractical or “pretend” activities.  In other words, students need to learn about work at work through community based vocational education programs and internships.  For example, some individuals with significant autism are participating in internships and working in hospitals through a program called Project SEARCH, developed by Erin Riehle, MSN, RN of Cincinnati Children’s Hospital that is being replicated throughout the United States.  Through the use of extended 9 month internships and job coaching/supported employment, individuals with significant autism are showing their work potential. For example, at replication sites in Richmond, Virginia students can be seen working in a variety of departments like ophthalmology and ambulatory surgery.

In closing, to forge ahead we must believe that all children with autism regardless of severity of disability have the right to and will indeed work in their communities.  We must also insist on timely (ie. work prior to exiting school), highly individualized, high quality supports to make employment become a reality.   If we stay focused on the mission, real work for real pay, when it comes to employment no child with autism will be left behind.

Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism.

Journal of Child Psychology and Psychiatry, 45(2), 212-229.

Targett, P. and Wehman, P. (2009). Integrated Employment.  InWehman, P., Datlow Smith, M. and Schall, C. Autism and the Transition to Adulthood:Success Beyond the Classroom pp.(163-188). Baltimore: Paul H. Brookes Publishing Co.

Wehman, P. (2011). Essentials in Transition Planning. Baltimore, MD. Paul H. Brookes Publishing Co.

Wehman, P., Datlow Smith, M. and Schall, C. (2009). Autism and the Transition to Adulthood:

Success Beyond the Classroom. Baltimore: Paul H. Brookes Publishing Co.

Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, select Find a Local Resource and browse the Resource Guide.

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