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President Obama Signs Landmark Combating Autism Act

September 30, 2011 76 comments

We are thrilled to announce that President Obama has signed legislation renewing the landmark Combating Autism Act for another three years, assuring continued federal support for critical autism research, services and treatment. Autism Speaks Co-founders Suzanne and Bob Wright, and Board Member Billy Mann and his wife Gena with son Jasper, today joined the President at the White House for an official ceremony that sends a message of hope to the millions of families and individuals affected by autism.

The Combating Autism Reauthorization Act (CARA) — sponsored by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the House of Representatives and Sen. Robert Menendez (D-NJ) and Sen. Mike Enzi (R-WY) in the Senate — would not have passed without the tireless efforts of advocates throughout the autism community. Across the nation, countless families and individuals united in a single voice and petitioned Washington to pass this vital legislation. Thanks to their efforts, the message was heard loud and clear: CARA passed unanimously in both the House and Senate despite an uncertain fiscal environment.

The new law continues the federal government’s commitment to autism research, services and treatment at current levels, authorizing $693 million over the next three years. The original act provided nearly $945 million over five years. Since its passage in 2006, significant advances have been made in determining potential causes for autism as well as promising new early intervention behavioral treatments. By signing CARA into law, President Obama has ensured the federal government’s commitment to autism so that crucial research can continue unimpeded for the next three years.

Autism Speaks salutes our lawmakers for listening, and responding, to the 1.5 million families across the nation who live with autism every day. To learn more about CARA, visit www.autismvotes.org/cara. To thank President Obama and your member of Congress and Senators for their support, please visit www.autismvotes.org/ThankPresidentObama.

Watch remarks by Autism Speaks Co-founders Suzanne and Bob Wright below.

In Their Own Words – My Son

September 30, 2011 7 comments

Ana Arroyo, Scentsy Independent Consultant, grew up in New York City and resides in Westchester County, New York with her family. Ana was one of the many Scentsy consultants across North America who enthusiastically embraced the company’s campaign to raise funds for Autism Speaks through the sale of the Piece-by-Piece warmer.

My son was diagnosed with having mild-autism tendencies at the age of two.  At first I did not understand what “autism” was and my husband explained it to me.  That day we both cried (so did my husband’s mother, who we were living with at the time).  The hardest part was telling our family (they were always asking “when is he going to speak?”), as we did not know how they would react to this.  It turned out that our family members and friends were very supportive and understanding (and again, we all cried).

We enrolled our son in an Early Intervention Program, where slowly he was making some progress.  He still played by himself and was set in doing things a certain way.  He was use to a routine, so there was times when he would not understand when he did not have school or see his bus come for him.

Every night I would read to him because I wanted him to be able to keep up with other children so that they would see that he was not so different.  In doing so, he learned how to read very quickly.  One thing that he was fascinated with was the subway trains.  He surprised me by remembering exactly where we stopped one day because he had to use the bathroom (he was only five at the time), I was shocked that he remembered.  I brought home a train map and every night he would sit in a corner, open the map and just look at it for about an hour and then very carefully fold it back the way it was and put it away.  This became a routine for him for several years and always at the same time.

The hardest time for him was high school.  We had just moved to Cortlandt Manor from the Bronx and it was hard for him to make friends.  He would come home and get upset and cry.  I would tell him that everything will work out fine and when you feel this way to take out your Bible and read a passage, which he did every day.  I put him in a bowling team in the hope that he would make friends.  He enjoyed bowling and taught himself how to curve the ball.  He would practice with his brother (who by the way is nine years younger).

My family and friends are so proud of my son, for he has come a long way from what we were told.  They told us that he would never graduate with a diploma, might not get a “real” job, etc.  Well, my son prove them wrong.  My son graduated from both the 8th and 12th grade with diplomas.  He served his country by joining the United States Navy (two weeks before 9/11) for five years and was honorably discharged.  He became a New York City Police Officer (his dream since he was 14 years old).  He is married, has a three year old son and is a Correctional Officer in Mobile, Alabama.

On Thursday, September 29, Autism Speaks received a visit from two special guests who travelled all the way from Idaho. Heidi and Orville Thompson, Co-owners of Scentsy, a rapidly growing party plan company offering a variety of home fragrance products, stopped by to present a check from sales of its Autism Speaks themed ‘Piece by Piece’ Charitable Cause Warmer for an amazing $533,880! Click here for full coverage!

Autism in the News – 09.30.11

September 30, 2011 Leave a comment

Donations sought for Kennewick murder victim (tricityherald.com)
Friends of a Kennewick man shot by his mother in a murder-suicide are collecting donations in his name to help raise awareness about autism. Read more.

Early, Intense Therapy Benefits Children with Autism (Psych Central)
Autism spectrum disorders (ASD) are typified by impaired social-communication skills. Children and adolescents with ASD have difficulty understanding, interacting and relating with others. Read more.

Now, drug for high BP may cure autism (The Times of India)
University of Missouri researchers have found that a drug used to treat high blood pressure and control heart rate as well as to reduce anxiety may help improve language and social function in people with autism. Read more.

Autism funding bill expected to be signed into law; among the advocates is Rep. Chris Smith (NJ.com)
A bill sponsored by U.S. Rep. Chris Smith providing nearly $700 million to fund autism research and programs is expected to be signed into law today. Read more.

Ministry offers service for autistic children (Marion, Calif.)
Oakland United Methodist Church, 835 Bellefontaine Ave., will have its first Autism Outreach worship service at 6 p.m. Saturday. The church will offer the service, which it adapted to the needs of autistic individuals and their families, on the last Saturday of the month. Read more.


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SiriusXM to Broadcast “Doctor Radio Reports: The Future of Autism

September 30, 2011 1 comment

World-Class Experts and Parents Explore the Transition of Children on the Autism Spectrum into Adulthood

September 30, 10:00 am – 12:00 pm ET/Doctor Radio, SiriusXM channel 81

This week on SiriusXM’s Doctor Radio Reports, host/veteran journalist Perri Peltz and a panel of world-class doctors, experts and parents of affected children examine the leading concern of parents with children on the autism spectrum—what happens as the children get older and the parents aren’t there to assist them? Will they be able to get a job, support themselves and find the support they need? In addition, what happens when parents are no longer there to provide care?

Geraldine Dawson, PhD, Chief Science Officer, Autism Speaks, Research Professor in the Department of Psychiatry at the University of North Carolina at Chapel Hill,Peter Bell, Executive Vice President of Programs and Services, Autism Speaks, Lisa Goring, Vice President of Family Services, Autism Speaks, Melissa Nishawala, MD, Medical Director of the Autism Spectrum Disorders Clinical & Research Program at the NYU Child Study Center and Jerry Hulick, Senior Planner with The Washington Group/Mass Mutual’s Special Care Planning Team join Peltz for this two-hour special, offering advice/tips on transitioning teens with autism to adulthood, including:

-       how to find appropriate housing situations for your autistic child

-       how to find support for their medical, psychological and social needs

-       estate planning tips to cover the cost of long-term care

-       establishing trust funds, applying for disability, and assigning guardianship for care and financial security after you’re gone

-       the newest developments in diagnosing and treating autism spectrum disorders

-       the latest in new medications and medication research to treat core autism symptoms as well as associated issues

Listeners are encouraged to call 1-877-NYU-DOCS (I-877-698-3627) or email docs@siriusxm.com with their questions.

Doctor Radio Reports: The Future of Autism will replay October 1 at 6:00 pm and October 2 at 8:00 pm ET.  

What do scientists mean when they talk about ‘environmental factors’ that cause autism?

September 30, 2011 34 comments

This week’s “Got Questions?” response comes from Alycia Halladay, PhD, Autism Speaks’ director of research for environmental science.

Research has taught us that there’s no simple explanation for what causes autism. We know that genes play a role, but they aren’t the whole picture. Environment also matters.

However “environment” can be a tricky term, as pediatrician Perri Klass recently noted in her New York Times column. In autism research, we use the word to refer to pretty much any influence beyond inherited genes—not just exposure to pollutants or other toxic chemicals.

In fact, the environmental factors that research most strongly links to autism are influences such as maternal infection during pregnancy (especially rubella), birth complications (especially those involving oxygen deprivation), and parental age at time of conception (dad as well as mom). Parents who wait less than one year between pregnancies may be at a slightly higher risk for having a child with autism. (Conversely, there is strong evidence that mothers who take prenatal vitamins before conceiving reduce the odds that their children will develop autism.)

Clearly, countless fetuses and babies are exposed to “environmental risk factors” such as these without ever developing autism. But if a child is genetically predisposed to autism, it appears that these influences further increase the risk. For this reason, we say that environmental factors increase the risk of autism rather than cause it.

Research has suggested that many other environmental, or nongenetic, factors may increase the risk for autism. But scientists can’t yet say whether these involve direct (versus coincidental) links. Such factors include a pregnant woman’s exposure to certain chemicals such as pesticides and phthalates (commonly found in plastics) or certain drugs such as terbutaline (used to stop premature labor), valproic acid (to control seizures), and some antipsychotics and mood stabilizers. Of course, in the case of medications, any possible increased risk of autism must be balanced against a woman’s medical needs—which can likewise affect the health of her pregnancy and children.

In addition, most environmental factors associated with autism appear to increase risk only slightly and only in combination with other factors such as genetic predisposition.  So it is difficult, in most cases, to pinpoint any one environmental influence. For these reasons, Autism Speaks continues to fund research on a wide range of environmental risk factors. Importantly, the more we learn about how these influences affect brain development, the better we can help the children, adults and families who are affected by autism.

Want to learn more about the research Autism Speaks is funding? On our Science Grant Search page, you can browse studies by topic and location. Finally, if you or your child is affected by autism, please consider participating in one of our clinical studies. Thanks, and please keep sending us your questions.

Scentsy raises funds and awareness for Autism Speaks

September 29, 2011 5 comments

On Thursday, September 29, Autism Speaks received a visit from two special guests who travelled all the way from Idaho. Heidi and Orville Thompson, Co-owners of Scentsy, a rapidly growing party plan company offering a variety of home fragrance products, stopped by to present a check from sales of its Autism Speaks themed ‘Piece by Piece’ Charitable Cause Warmer for an amazing $533,880!

Twice a year, with the help of its Independent Consultants, Scentsy chooses a new cause to support. The Scentsy Consultants, many of whom have personal connections to autism, selected Autism Speaks as one of this year’s causes. As part of the campaign, Scentsy designed the ‘Piece by Piece’ Charitable Cause Warmer, adorned with colorful jigsaw pieces, to honor the mission of Autism Speaks. From April through August, one hundred percent of the net proceeds from the sale of each Charitable Cause Warmer went to support Autism Speaks. Thanks to the efforts of Scentsy and its 100,000 Independent Consultants, the campaign helped raise awareness around the country and much needed funds for the countless families affected by autism.

During their visit, Heidi and Orville were joined by two local Independent Consultants who took part in the campaign. The group toured Autism Speaks and met with staff. The day culminated with the check presentation ceremony and remarks by Heidi, Orville and Autism Speaks President Mark Roithmayr on the importance of supporting the autism community and overwhelming success of the Scentsy campaign. We’d like to extend our gratitude to all of our friends at Scentsy. It was truly a great day for both organizations!

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In Their Own Words – I Want My Money Back

September 29, 2011 94 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

At the tender age of fifteen, I saw my first psychologist, a stern, elderly man who smelled like a second hand bookstore. His full, wiry beard, was speckled with white and gray, as if it had caught the contents of an overturned ashtray. It fell past his chest, disappearing beneath the edge of his massive, oak desk. I wondered if it reached his toes, and leaned forward awkwardly, hoping for a revealing glimpse.

“Young man,” he said, startling me. “Tell me why you’re here.”

“Do you shampoo that beard?” I asked.

“Excuse me…”

“You look like Charles Darwin.”

He leaned back and stared at me, mildly annoyed, as if I was a fly he had noticed swimming in his coffee. “Your family is concerned by you behavior. I believe…”

“I commend you, sir!” I interrupted. “The world is experiencing a shortage of truly magnificent facial hair; you’ve got the best beard I’ve seen all year! You know who else had a good beard? Sigmund Freud. Are you a Freudian psychologist?”

“Young man, let’s try to stay on topic.”

“Right, beards… Nobody could beat Tolstoy’s beard. Now that dude had a beard!”

“Young man!” he bellowed, startling me again.

“Humph… Young man,” I muttered. “Just ‘cause I can’t grow a big fancy beard…”

The psychologist lifted a notepad from his desk and began scribbling absentmindedly. “I’m afraid,” he said, “that you have a very serious case of Bipolar Disorder.”

“Huh? How do you know? I’ve only been here for five minutes!”

“Trust me; I’ve been around a long time.”

“But… I’ve never had a manic episode, and the DSM-IV clearly states…”

“You, my dear boy, are an upstart!” the psychologist fumed, a fat, blue vein trembling in his forehead.

“Ok, chill dude… I’m bipolar. Whatever you say… Beethoven was bipolar. I don’t think he had a beard though…”

For as long as I can remember, people have been trying to figure me out. Other parents told my mother and father that I was clearly lacking discipline. Teachers refused me an education unless I was prescribed enough Ritalin to keep the Rolling Stones touring for another century. Pastors believed I was possessed, and prepared to wipe my projectile vomit from the pews when I trotted into Sunday morning service.

Hyperactive, precocious, and more than a little odd, I was truly a handful. Snakes, snails, and puppy dog tails? If only my mother was so lucky. Someone must have littered my gene pool with pixie sticks, happy meals, mountain dew, and an Encyclopedia Britannica.

“There’s something wrong with him,” my mother would sob. “He’s allergic to people! He won’t sit still, he won’t listen, he’s always hurting himself, and he’s smarter than my whole graduating class put together!”

I treated other children like overgrown action figures, ordering them about, an infantile Cecil B. Demille directing a playground epic. “C’mon Tina, say that line again, and this time, say it with feeling! Put down the Polly Pocket and explain your character’s motivation!” Eventually, my peers developed their own interests, and I was left to wander the playground alone, thinking of Ghostbusters, Power Rangers, and… existential motifs in Russian literature.

“Scotty’s latest obsession,” was a phrase used regularly to describe the most current of my all encompassing interests. At twelve years-old, I had forgotten more randomly collected information than most people will learn in college. My obsessions gradually became less and less age appropriate as my focus narrowed; retired barbiturate and amphetamine combinations used as antidepressants in the 50s and 60s; sadomasochistic undertones in the cinema of Joseph von Sternberg; and the impact of synesthesia on the literature of Vladimir Nabokov; to name a select few.

I wasn’t interested in girls, or boys, for that matter. My parents bought me a Mustang for my sixteenth birthday – I drove it all of three times. I wore the same few outfits day after day. I was diagnosed with ADHD, Generalized Anxiety Disorder, Borderline Personality Disorder, Major Depressive Disorder, and, of course, Bipolar Disorder.

True, I was rather emotionally volatile, but this was greatly exacerbated by the constant chaos which engulfed my family. My father had played major league Baseball for the Seattle Mariners, and was absent for the majority of my childhood. As a result of his career, my family moved dozens of times before I was ten years-old. When I was twelve, my eight year-old brother fell 31 feet from a ski lift, nearly dying.  If that wasn’t enough, the routine MRI, which followed his accident, revealed a tumor in his brain. He  later underwent a dangerous surgery to have it removed. My adopted sister was diagnosed with leukemia at three years-old. My father required an open heart surgery to repair a leaking mitral valve.

Though thoroughly weary of hospitals, I was typically content to find a quiet corner of the waiting room and study Italian Neorealism – “Scott, your sister is dying, no one wants to hear about Federico Fellini!”

Psychiatrists pumped me full of every neuroleptic in the book (Adderall and Celexa, medications which I am now benefiting enormously from, were withheld because they are contraindicated in cases of Bipolar Disorder). I was as incoherent as Mel Gibson at happy hour, and experienced agonizing side-effects which led me to attempt suicide.

My sister died at ten years-old, after battling leukemia for seven years. I was holding her hand when she passed. I was fed up with life, convinced that I was a waste of oxygen in a cruel and meaningless world.

I began heavily abusing street drugs, playing intravenous Russian roulette with every pill and powder I could get my hands on. I would wake up on the cool linoleum of my bathroom floor cursing my indestructibility – I was still alive.

I spent time in mental hospitals and treatment centers. Luckily, my obsession with drugs had a shelf life, as all my obsessions do. I lost interest and moved on.

At 24 years-old, my girlfriend suggested that I might have Asperger Syndrome.

“Huh?”

“Scott,” she said, “you can recite every line of the movie Cabaret, yet you haven’t seen it since you were thirteen. You just listed every currently marketed benzodiazepine in alphabetical order, apparently for my entertainment.

“So…?”

“You’re a walking dictionary but you can’t remember your own address. Not only can you not drive, you can’t figure out which of the three cars parked in your driveway is mine. I think you should see a doctor.”

“I’ve seen them all.”

“Scott…”

“Ok… ok… Wait, I’m autistic? I want my money back…”

How did I manage to live a quarter of a century without being properly diagnosed. I’m autistic – duh!

Discovering my autism has been my saving grace. I will never forget the overwhelming emotions that poured over me when I first read about Asperger Syndrome in the DSM-IV. I’m not broken. I’m not bad. I’m just autistic and that is alright!  Since being formally diagnosed, I’ve come to understand and embrace myself for the remarkable person I am. In a few short months, I’ve become a prolific autistic writer, with a column appearing this week on wrongplanet.net, a potential contract with a publishing company, translations of my articles in Hebrew, public speaking engagements, and an opportunity to travel to San Francisco to help Alex Plank and crew film a documentary on Hacking Autism.

Somebody pinch me!

Even when I had given up on myself, God had a plan for my life. I now have the opportunity to use my gifts to spread awareness of autism spectrum disorders. If sharing my experiences spares other autistics from going through the pain of living undiagnosed, my struggles will not have been in vain.

My diagnosis has been my vindication and my inspiration. I want to shout it from the rooftops; “I’m autistic!”

Well, better late than never.

Seriously though, I want my money back…

“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.

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