Archive for June, 2010

Autism in the News – Monday, 06.28.10

June 28, 2010 1 comment

Charges Dropped Against Tasered Autistic Teen (Tybee Island, Ga.)
An autistic Georgia teenager who was Tasered by police in May will not face charges. Read more

Autism SchoolProfile: PACE in Santa Clara (Santa Clara, Calif.)
Back when Matthew was around ten years old, he had the mother of all tantrums in the grocery store, one that that left a bloody scratch on my arm. A sympathetic shopper offered a band-aid, and as I thanked her, I explained that Matthew had autism. Read more.

Speech language pathologists essential when treating Autism Spectrum Disorders (Brownsville, Texas)
“Logan” was a nervous boy. He would bite himself whenever he was afraid. As a child with autism, changes frightened him. His biting was increasing because he could not communicate what he was feeling. Read more.

Filmmaking camp puts kids with autism in spotlight. (Jacksonville, Fla.)
“Let’s move it,” Joey Travolta tells the crew before actress Dani Moore hits her cue at an elevator in the University of North Florida’s student center ballroom. Read more.

Students with Autism Enjoyed Day at Walt Disney World After Raising Own Fun (Orlando, Fla.)
Seven students enrolled in Eden Autism Services Florida’s school for children with autism enjoyed a day at Walt Disney World and night at a resort hotel this month, thanks to money they raised themselves. Read more.

Books: A father comes to terms with son’s autism in ‘Saving Ben’ (Dallas, Texas)
Fatherhood did not go as planned for Dan Burns. He spent decades seeking to rescue Ben, the youngest of his three children, from autism. Read more.

Speech language pathologists essential when treating Autism Spectrum Disorders (Brownsville, Texas)
“Logan” was a nervous boy. He would bite himself whenever he was afraid. As a child with autism, changes frightened him. His biting was increasing because he could not communicate what he was feeling. Read more.

Raising autistic child requires strong support system (New Berns, N.C.)
To shield her identity given her current occupation, 25-year-old “Stephanie” preferred using a pseudonym for this column. In the mid-’90s, a doctor diagnosed her then 4-year-old brother “Kenny” with autism. Read more.

Autism School Profile: PACE in Santa Clara

Back when Matthew was around ten years old, he had the mother of all tantrums in the grocery store, one that that left a bloody scratch on my arm. A sympathetic shopper offered a band-aid, and as I thanked her, I explained that Matthew had autism.

Read more:

In Their Own Words – Autism Remission?

June 28, 2010 23 comments

This “In Their Own Words” essay was submitted by Orfa De armas of Seattle, Wash. who has a son with autism. Orfa’s writing can be read in English and in Spanish on her blogs.

I breathe autism.
I eat autism.
I drink autism.
I live to fight it and to win the battle.

So why am I so speechless? I should be celebrating today’s news and jumping up and down with joy. Why do I feel so confused when we’ve kicked autism in the butt so early in the game?

Today, May 19, 2010, marks the end for us of two long years of early intervention under the guidance of the University of Washington Autism Center. We moved across the country in 2007 so we could get on a waiting list to obtain an early diagnosis for our son, Frankie, and to learn the next step for this lifelong journey. Today, we got more than what we had been hoping for; besides a tentative label for his forehead reading: PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) we also got the news that he was no longer considered autistic, per se. In order to explain this better, we were told that if our kid had cancer, he would now be in remission – so, we needed to watch it, keep it in check, be aware there could be a regression if a big crisis would arise, if stressful situations involving big changes or social challenges ever took place. But for now, it’s all good … it’s all too good.

So, if this analogy is right, does that make Frankie an autism survivor?

Personally, this information creates a big paradigm shift for me. I have spent the past 30 months learning to accept the reality of Frankie’s autism and brainwashing myself to deal with it for life. Ever since we contemplated the possibility that our youngest son had autism, I was scared of the unknown. I made it a point to know. I promised myself that if I knew enough, or in my case, more than enough, I wouldn’t be scared to take on the fight. I’ve always believed that ignorance holds you back and that knowledge is power – so that’s what I did: I learned. Autism became my thing – I learned to listen, I learned to process, I learned to research and I became a pro at it. Name the website of the month, I knew it. Name the event of the week, I knew it. I was informed and on top of it. I gave the early intervention of my child the highest priority in this family. Our lives revolved around the parent training sessions, the intervention schedules, the evaluations – everybody was on board and there was no other way. No long vacations were allowed; we had sessions in the middle of snowstorms, hail and rain – not a minute went to waste. The efforts paid off but the reward was more than we bargained for.

Then, why on Earth am I so shocked at what I heard today?
Perhaps I’m shocked because I never really expected to win the battle?
Perhaps because now I’m left without a purpose, without a mission?
Maybe because at one point this became more about me than about Frankie?
Is it because I feel that we belong in the autism community and we will have no identity left once we are out?

I’m not sure of the reasons of why I feel so surprised at what the future holds for Frankie. The truth is that I just wished for him to survive and now I’m told that he can thrive and this is hard to process. I am, once again, scared, but this time I’m scared to take on this new reality and truly enjoy it because it seems so unreal. Could it be really happening? How did it happen? What did we do differently? Why can’t this be the outcome of every family living with autism? What is that magic ingredient we found without knowing?

So many questions are dancing in my head and are making me dizzy but one thing remains very clear to me; the sky is the limit when you reach for it and there is always a light at the end of the tunnel. Our tunnel was shorter than other families’ tunnels but it was indeed a tunnel and it was very dark. But the light at the end is so bright, I might need to wear my shades all day long!

“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 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.

Brain Tissue Research Innovation Wins Top Award at IMFAR

June 28, 2010 3 comments

This is a guest post by Autism Speaks staffer Jane Pickett, Ph.D.

The 10th annual international gathering of autism scientists, researchers and advocates, known as IMFAR, (International Meeting for Autism Research), was held last month. At the meeting, the prestigious Slifka/Ritvo award for research innovation went to a project using post mortem brain tissue to help researchers using MRI on living subjects to define boundaries between various brain regions. This research is important because every brain is a little bit different and we need new tools to accurately compare brain areas across individuals.

Drs. Thomas Avino and Jeffrey Hutsler at the University of Reno tackled the problem of defining the border between brain cells making up the ‘gray matter’ and the ‘white matter’ located in the center of the brain) by examining brain tissue of donors to the Autism Tissue Program.  Their project, ‘Quantification of the gray/white matter boundary in Autism Spectrum Disorders’, assessed 3 brain regions in 8 males with autism and 8 age- and sex-matched control donors.

Control brain

Autism brain

The images at the left mark the location of neurons in the lower cellular layer of the cortex, Layer VI, and also the white matter below it.  The image (left) of an unaffected donor shows a typical transition zone; the autism brain specimens have a poorly defined zone, with the cell bodies of neurons spilling into areas where they are not expected to be.  Looking directly at brain cells, it is easy to understand the MRI reports of ‘poor distinctiveness’ between cortical gray and white matter and now imaging researchers have a mathematical model to consider in their assessments of gray/white matter as they study brain development in children with autism.

Independent examination of other autism brain samples by post doctoral student Adrian Oblak from Boston University School of Medicine also showed many neurons atypically located in white matter. More specifically, these neurons were found in the cortex involved in emotion and memory process and face processing.  Microscopic images of marked cells in this area, the posterior cingulate gyrus, show cells on the right, in the autism brain, massing into the white matter.

Why is this important in today’s autism world?  Years of study of the developing human brain show that at embryonic brain cells begin to ‘climb’ up to the cortical surface and by 5 months gestation virtually all are located above the new myelin-dense ‘white matter’.  A delay in this migration during the second trimester of pregnancy is thought to be caused by a lack of proper cell signaling due to a genetic and/or environmental impact on the developing brain.  What is important is that this change in brain structure is seen into adulthood in brains of donors with autism; therefore, further research of brain cell architecture, combined with brain tissue genotyping, will reveal more about changes occurring during the development of the central nervous system.  The correct configuration of the cortical cell layers is crucial for further maturation and functionality of the brain.  A number of coordinated events need to occur for this early development such as proper signals for cell birth, migration, maturation and final proper distribution of new brain cells.  Genes that guide these events are becoming better understood (read about a new genetics study).

What does this have to do with you?  None of this research is possible without brain donation.  If you are interested in learning more about the Autism Tissue Program, or registering you and your family with the program, please visit our website at, email us at or call 1-877-333-0999.

In Their Own Words – Focusing on the “Cans”

June 27, 2010 6 comments

This “In Their Own Words” essay was submitted by Teresa Greenwood of Hays, Kansas, who has a daughter with autism.

This was my first celebration of World Autism Awareness Day. A year ago I didn’t know that April 2 was anything other than another day on the calendar.

Did I ever think about autism before my two-year-old daughter was diagnosed – no. Sure, I’d heard of it, and I sympathized with families that “had to deal” with a child with a disability. I did not know anyone with a child with autism, however. And I never would have thought it would affect my family, but it has.

Morgan’s diagnosis, and her progress since then, has changed my life for the better. I have more patience than ever before, and more understanding that we have to cherish every blessing we have. I am blessed to have Morgan in my life, and I would not change her in any way. Also, I am blessed with three other children who love their sister and embrace her diagnosis.

Of course, I grieve for the child she could have been without autism, but I also recognize the amazing child she is with it. When I drop her off at daycare and another two year old says “Hi, what’s your name?” I am reminded that Morgan only occasionally says “Momma” and mostly babbles without words. I know that she may never be fully verbal and will probably be in special education classes in school. The odds are she will never live independently. When she becomes excited or upset she will flap her arms uncontrollably. She easily becomes overwhelmed to where she has to drop to her knees and suck on her fingers. She is an extremely picky eater, like most people who have autism, and she has trouble sleeping at times. But I do not dwell on the “can’ts” and the “nevers.” I focus on the “cans.”

Morgan transformed from completely nonverbal with little eye contact to a bright child who babbles constantly. She will hold a pig and say “oink oink.” She will hold a cow and say “mooooo.” She also has a sheep, which says “baaaa.” She holds these animals to a toy hay bale to make them eat. She now waves bye-bye on occassion, and she has used some of the sign language she has learned. She will make a spider sign when she wants to sing “Itsy bitsy spider.” And she will pull her sisters’ hair if they get too close. She will run to her daddy when it is time to pray, and she will come crawl in bed with us in the middle of the night.

Morgan thrives in her therapy and learns quickly. And I can’t thank her therapists enough for taking the time to work with her, to help her become the person she was meant to be. Early intervention is key to successfully living with autism, and Morgan was fortunate enough to be able to experience that.

I watched a video of a speech by Temple Grandin, who has her doctorate’s degree and is a published author … and who also has autism. HBO recently made a movie about her, which I have yet to see. Watching the real Temple give a speech about her life with autism – and her successes since her diagnosis – gives me such hope that there is a place in this world for my daughter’s beautiful mind.

I sympathize with the people glaring at us in church because Morgan is holding her toy cow in the air and yelling “moooooo!” But I am not sorry, because to me there is not a more beautiful sound in the world than my autistic daughter finally finding her voice and saying words. Even if it’s barnyard talk.

On World Autism Awareness Day,  remember autism, and the millions of families affected by this spectrum disorder. Research is continuing so that hopefully, someday, more can be understood about this mystifying disabiliity. Until then, I will continue to grin at my daughter while she talks to her farm animals, being extremely proud of all she has accomplished at such a young age.

“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 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 Speaks U Rocks for Autism on the Vans Warped Tour

June 26, 2010 2 comments

This is a guest post by Christina-Marie Drake. Christina is a 20-year-old student at Defiance College, where she is President of the Delta Pi Chapter of Alpha Xi Delta, a cheerleader, editor-in-chief of the newspaper, a Citizen Leader, a pageant winner, and a Mixed Media Studies major. She is an Autism Speaks U Student Leader and helps to spread awareness and raise funds for those affected by autism.

As a San Diego, Calif. native, I started getting involved in the local music scene at age 14after spending five years in concert band where I learned to play over 13 instruments! While working in San Diego with local bands, I started putting on benefit concerts. The first was for breast cancer as part of my Teen Miss Lakeside 2006 pageant platform. The next concert I put on was for  children’s diabetes, which raised $6,000. Most recently, my insanely crazy but fun schedule took on another task, a self-made project called “Rock For Autism.” I began working on my “Rock For Autism” (RFA) project using the contacts I have made in the 3 years I was involved. This new project, in addition to the benefit shows already put on, got me national recognition from Seventeen magazine, The Quill, and local papers around the states.

I moved to college where my sorority, Alpha Xi Delta, partnered with Autism Speaks around the same time.  I was preparing to invest in the creation of my “Rock For Autism” project. After the sorority partnership, and my work at the YMCA and college with some students who have autism, I decided to contact Autism Speaks in hopes of gaining their support, too. I was then introduced to Autism Speaks U, an initiative of Autism Speaks that works with college students who host fundraising, awareness and advocacy events. They welcomed my project with open arms. By the time I got in touch with the organization, RFA  had already participated on a variety of local tours with bands including The Summer Set, Every Avenue, Hotspur, There For Tomorrow, Hit the Lights, Sparks the Rescue, Four Year Strong, Blink-182, and AFI. The next undertaking was this year’s Vans Warped Tour.

Vans Warped Tour is a national tour that services an average of 12,000-15,000 kids a day with a variety of acts. During the tour, RFA will have a booth set up that will be fundraising for Autism Speaks U in an innovative way that will appeal to the student demographic. RFA will have a dice game in which everyone wins for just a buck! Prizes range from pins to skatedecks and more, all while spreading awareness and education to the next generation autism will affect more directly. The tour will run June 25-August 11 and you can come by the booth at any time at any of those cities to support the cause! Click here for a list of cities.

For those of you not able to attend the tour dates, connect with me on Twitter @ChristinaRFA for immediate updates or make a donation to my online fundraising page.

In Their Own Words – Finding the Right Words

June 26, 2010 8 comments

This “In Their Own Words” essay was written by Rose Wade. Rose has two children, including a son with autism. She is a military wife and the founder of The Robin Hood Lego Campaign Advocating Autism Awareness and Lego Therapy.

Our home is often held together by words both written and spoken. When my son first said “mama,” it brought tears of happiness to my eyes. There are words of encouragement and correction I’ll give to my children until I’m old and grey. Or older and greyer than I am now.

We’re a military family. My husband has been apart from us many times. From brief two-week temporary duty assignments, six-month deployments to Iraq and Afghanistan, and now a year-long remote tour in Korea.

The time allotted to him for moral calls to us is free, but brief. Our family has fifteen minutes to cling to each others’ voices. Every word spoken is precious. We save letters for birthday, anniversaries, and holiday cards. There are several, ribbon-tied envelopes from years of correspondence tucked away in the closet.

My 12-year-old son, Matthew, was diagnosed with high-functioning autism. Though I still haven’t been able to encourage him to write a letter to his father, I love every minute of listening to him chatting on the webcam during the few instances when my husband can be away from duty.

Matthew will talk endlessly on several subjects and they’ll all string together. One word or phrase will remind him of something else he saw or learned, and the talking will continue.

His talking is also filled with questions. I never know where I’ll be, or what I’ll be doing when I’ll be asked a question about the formation of the sun, and two seconds later be asked why the mail doesn’t run on Sundays.

I do what I can to keep up with the questions. I’ve had to search my own ‘files’ for the appropriate answers. I’ve often had to reply “I’m not sure.” It’s a good thing I’m not a contestant on ‘Jeopardy’. I’d owe money to Alex Trebek.

My 10-year-old daughter, Kayli, asked Matthew why he’s always so talkative in the car. I didn’t notice it myself until she pointed it out. While I’m driving and answering Matthew’s questions, I must look like I’m talking to myself or singing with the radio. So far, I haven’t been pulled over by the security forces on base because they thought I’ve been on a cell phone.

Matthew speaks often. Sometimes it wears on my patience, but I do my best to give him answers even if I have to often gently remind him that he had asked me the same questions yesterday. He’s talkative, but I wonder how many of my responses are getting through to him. I’ve spoken to him about several subjects, several times. But I know I’ll be asked again next week.

Thanks to the inspiration of a talented man, I found a passion for creative writing. It has given me a new creative outlet that helps me cope with my brave husband’s long absences that leave me to deal with daily fears about his safety, my darling son with autism, my social butterfly daughter, and household appliances that only cause trouble while my husband is away.

Inspiration was given to me again, by the same talented man, and led me to start The Robin Hood Lego Campaign Advocating For Autism Awareness & Lego Therapy. My writing has found another, important outlet. My hope for the campaign is to educate others about autism by expressing my experiences with a child on the spectrum.

My son has high-functioning autism. He comes with his own challenges and triumphs. There are children across the varied autism spectrum, each with has loved ones who search for ways to cope with the effects of autism on the child, and on the family.

Sometimes words are too repetitive, too harsh, not clear enough, filled with impatience. Sometimes the right words are simply missing.

I worried over my first blog post about autism entitled “How Would You Know If a Fish Had Autism?” Would people want to read it? Would they understand my point-of-view?

The blog post received comments from mothers of children with autism, paraeducators, and adults with autism. Their heartfelt words touched my own heart and reminded me not to give up my campaign to raise awareness of autism and its effects on families.

I listen to the words and questions spoken by my son and I learn more every day about him, and about autism. Just like my son’s words to me, the words I share with others about autism may not always be the right ones, or understood, or relatable to everyone, but they will always come from the heart.

“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 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.

Kudos to Ryan Hemphill and Best Buy

June 25, 2010 7 comments

As a society, we have an obligation to secure a brighter future for individuals with autism spectrum disorders. By taking action now, we can ensure that adults with autism break free of the all-too-common status of “dependency” and become engaged, involved and ideally, tax-paying, members of their communities. It is time to develop and drive policies that provide for life-long living and learning with autism. Last year, in response to this urgent need, Autism Speaks assisted in the formation of Advancing Futures for Adults with Autism (AFAA), a national consortium seeking to create meaningful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities.

We love to share success stories of adults who have autism and we also look to recognize socially responsible companies who help them on their path to independence. The video below highlights Ryan, an adult with Asperger Syndrome and his positive experience working at Best Buy.

We also would like to recognize Best Buy for its efforts in hiring adults with autism and developing their careers. Best Buy has a new program called FACE – Facing Autism in a Caring Environment. FACE is a Focused Involvement Network (FIN) at Best Buy. The mission of FACE is to build a community of Best Buy employees that will promote awareness of autism spectrum disorders (ASD) and support their families through networking, the sharing of resources and providing encouragement. The campaign was launched this month at Best Buy, and Ryan was a big part of the launch at the Best Buy headquarters in Minneapolis.

Join us in congratulating Ryan on his success (and the new car he bought with his earnings!) and in thanking Best Buy for its efforts to employ adults with autism to promote their independence.

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