Archive

Archive for January, 2010

In Their Own Words – Hanging My Hat on Hope

January 31, 2010 3 comments

The 10th Annual Long Island Walk Now for Autism Speaks Awards Reception took place last week. It was a wonderful evening of celebration, not just because of the money we raised – over $1.4 million – but because of the people that came together to make a difference in the autism community. The night was about Brendan, Eileen, Joseph and all of the kids and adults affected by autism. This is a very special community and I am honored to be a part of it.

Unfortunately, there is a lot of divisiveness in the autism community in general, a lot of dissension, a lot of “my way or the highway” mentality. It is a funky energy that often baffles me. I believe it is rooted in the overwhelming passion that families have for their loved ones affected by autism. They face indescribable challenges, from the seemingly mundane to the enormous. They are desperate for answers. And the majority of society doesn’t get it. Most people don’t have a clue about what living with autism 24/7 is like. Add sleep deprivation to the mix, and there are powder kegs of emotion everywhere.

The flipside to the conflicting opinions, and the thing I hang my hat on, is hope. My hope for the community is rooted in the one thing that unites us, the bedrock and the common foundation for all of us – our loved ones. So we can be on very different sides of the fence – pro–bio–medical or pro–science, pro–vaccine or anti–vaccine, pro–GFCF diet or anti–GFCF diet, genetic or environment – but we are all in the same backyard, encompassed by the same fence.

All parents of children with autism – child or adult – that I have met are most passionate about their children. No matter what side of the fence they reside on, or if they are on the fence at all, or in neutral territory (like Switzerland); they are driven to make the best life possible for their children. They are hopeful.

That shared hope is what will unite this community in the long run, because no matter what your beliefs about what causes autism, we are in it for our children. The autism debate comes down to this – Danny, Tom, Kelly, Tyler, Brendan, Kevin, Jackson, Christian, Kerry, Nicky, Jonathan and countless others. They are individuals with names, faces, lives and families who love them. Call me an optimist – which I am – but I truly believe that under all the debates and arguments and contrasting opinions, the love and passion for our children will rise to the top and bring us together.

I believe that opposing sides will one day meet at the fence and that the first questions they ask each other will not be “What do you believe causes autism?” Or “Why don’t you believe what I believe?” It will be “Who is your child? Whom do you love who is affected by autism? Who are you fighting this battle for?” So that we begin at the beginning, and uncover our commonalities before we begin discussing what divides us.

Someday, we will have the answers we seek, no matter what path was traveled to find them. Some day … I “have a dream” that someday we will be a united community, not always in agreement, because that would be boring, but united in our passion for our children, or anyone we love affected by autism. I have a dream that someday, there won’t be a fence.

This “In Their Own Words” essay is written by Rose Ann Walsh of Northport, N.Y.

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.

Leaving On a Jet Plane

January 30, 2010 Leave a comment

I am getting ready to head to Manila, Philippines for the first ever International Autism Conference (IAC) to be held in that country and the largest to be held in that region. It is being organized by the Autism Hearts Foundation and Autism Hearts Philippines and among the sponsors is Autism Speaks.

Medical experts from around the world will be onsite to present the most current research and information on diagnosis, assessment and treatments of ASD, as well as to review current policies to create a baseline from which to support individuals on the spectrum and their families. I am attending to present on autism awareness along with two of my colleagues from the science team – Andy Shih, Ph.D. and Michael Rosanoff, MPH.

The conference will also launch the Global Autism Public Health initiative in the Philippines (GAPH Philippines), a partnership between the Autism Hearts Foundation and Autism Speaks. The GAPH focuses on increasing public and professional awareness of ASD; increasing research expertise and international collaboration through training of autism researchers, with a focus on epidemiology, screening and early diagnosis, and treatment, and enhancing service delivery by providing training and expertise to service providers in early diagnosis and intervention.

Stay tuned later on next week for an update. The conference runs Feb. 3-5 and I hope to be able to post at least one or two recaps. I will also be tweeting if anyone wants to follow me at twitter.com/dmarnane!

By Dana Marnane, National Director Communications and Marketing, Autism Speaks

How Do You Raise Awareness?

January 29, 2010 Leave a comment

I received an e-mail yesterday from one of our supporters, Hannah Sullivan (pictured here). Hannah writes:

I am 19 years old and my sister Katie was diagnosed with autism when I was about five.  She is currently 20 years old and I’ve always wanted to do something special for her so I’ll always carry her with me.

Last August, I decided to act on this promise and I got a tattoo on my back dedicated to her. After sharing it with my family, my father actually decided to get the same tattoo on the back of his calf.

I’m not sure if you’d be able to publish this on your website but I just wanted to share our story and show my appreciation for everything your cause does.

Hannah’s story is just one of the many unique stories we hear every day.  Are you or someone you know taking unique measures to raise autism awareness? Send your story to editors@autismspeaks.org.

 

Happy Friday!

Categories: Awareness Tags: , ,

In Their Own Words: Ignorance is Not Bliss

January 28, 2010 7 comments

As the parent of two children who have autism, I have been their shield and their sword since birth. I protect them from outside influences, which affect their routines and trigger their sensory issues; I fight for services at school; I pay for necessary and expensive medications and therapy and I have totally changed my own lifestyle to accommodate their needs.

The problem is that I don’t know how far to go with all of this.

At some point, my teenage daughter is going to have to face the world without my sword and shield. She’s 14. That’s a far cry from being an adult, but I keep asking myself what I can do now to help her transition into an independent person by the time she goes to college.

How far do I push her and when do I let her fail so that she can learn how to pick up her own pieces?

My daughter has difficulty reading social clues and she takes everything at face value. There is only black and white in her world, no shades of gray.

In other words, she’s “clueless,” which has its advantages for now.

Jessie doesn’t pick up on spoken innuendos and teen body language. If someone said “He’s hot,” she might think the guy had a fever. (Really, I’m serious …)

If I mention boys to Jessie, she adamantly insists that she’s never dating, never getting married and never having kids. She simply cannot envision a future in which she will change her mind on these issues.

As a teen who has autism, Jessie’s physical development is on par with her age, but light years ahead of her social development. Believe me when I say that guys around her see it, even if she doesn’t.

In the back of my mind I keep thinking about the movie Harper Valley PTA, in which the somewhat mousy/shy teenager gets her braces off, gets a new hairstyle and suddenly everyone sees her as “grown up.” Jessie’s almost there. Her early teen acne is clearing up, she just got her braces off and she’s tall and very athletic for her age. Yet, she’s totally clueless and totally dependent on us to make the right choices for her.

I literally have to force Jessie to participate in activities outside our home. She loves soccer, but hates activities with her teammates outside of regular practice and games. The same applies to school and church. Daily and weekly routines such as Sunday school and Wednesday night youth activities are fine, but field trips and special youth activities are outside Jessie’s routine.

This weekend I practically had to force Jessie to pack her bags for the youth lock-in. I will say that I was very proud of her when she explained why she did not want to go: “I feel alone there,” she said.

I could have cried, because I know exactly how she feels, and her comments made me question whether I was making the right choice for her. I did not back down, however, despite the fact that my husband kept telling me not to force Jessie to do something she does not want to do.

This was too important and it was a great opportunity for Jessie to try to socialize in a very protective atmosphere. We have a wonderful church and great youth group and I know Jessie is in good hands when she’s there.

And yes, in the end, Jessie had a really good time. She made a couple of friends and for the third year in a row, she stayed all night, after swearing that she would not.

Still, church activities are not enough. At some point, Jessie is going to have to learn to deal with society outside of the protections of home and church. She should be dealing with these issues at school, but we moved her to a small private school this fall, which was the best available option for her learning disabilities.

Our goal with school is to make sure that Jessie catches up with her peers so that she can go to college someday, even if she needs more time to get there. The drawback is that Jessie’s school is a small protected atmosphere where learning is key; everyone wears the same uniform and there is absolutely no exposure to the bad aspects of today’s society.

Ignorance is not bliss; it’s dangerous, and I am so afraid that Jessie will be unprepared for life in college and beyond.

So where do I go from here? How far do I push my autistic teen? How much do I continue to limit her exposure to outside influences? In other words, how do I prepare Jessie for life in a non-autistic world?

I wish I had answers to these questions, but I don’t, because when it comes to parenting a teen who has autism, I have only just begun. I enjoy posting about my past experiences with autism to help other parents while they are going through the same issues that I have already faced. This is one of the few times that I have written about the issues I am currently facing, to which I don’t yet have any answers.

And I feel like I’m back to walking on egg shells.

My life as a parent of children who have autism often results in taking one baby step forward and two big steps back. I’m afraid that, if I make the wrong decision with regard to my teenager, she will regress so far socially that I cannot bring her back.

But, I can’t be Jessie’s shield and sword forever. I have to find a way to push Jessie out into the “real” world a little at a time so that she can learn to stand and fall on her own.

This “In Their Own Words” essay is written by Nianya Cambridge.

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.

In Their Own Words – Getting From There to Here

January 27, 2010 4 comments

My son, Justin, is a child with a medical and an educational diagnosis of Asperger’s Syndrome.

My wife and I have struggled to obtain educational services that would allow him to go onto higher learning and/or independent living to the fullest extent possible. An ongoing denial of a Free and Appropriate Public Education resulted in the public school paying for a private school placement for my son’s junior and senior years of high school.

We recently got my son’s high school transcript and his class ranking is #9 out of 424 seniors in the public high school that he is administratively enrolled in.

My son is a living reminder to parents of kids on the spectrum that you can get there from here. 

This “In Their Own Words” is written by David B. Cockrell.

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.

In Their Own Words – Redemption

January 26, 2010 Leave a comment

It was the day before Thanksgiving and our daughter’s elementary school was having a Turkey Trot, where the kids run a mile while chasing an older student dressed up in a turkey costume. Of course, I was there to cheer on our first grader, Joan, who has autism, as she did her best to keep up with the other children. As all of the students started crossing the finish line, I noticed Joan had barely made it through half of the course and was visibly upset. Her teacher went running out on the course to hold Joan’s hand and ran the rest of the course with her, but it didn’t do much good. She kept calling herself a failure because she lost. My heart was breaking as I remembered the sinking feeling I had as a child when I wasn’t as good of a runner as everyone else. In tears, she went back to her classroom to finish the school day.

After school, she was still upset when she came home and just wanted to hang out with her daddy. Then the phone rang. On the other end of the line, a lady asked to speak to the parents of Joan (having the majority of our calls begin like this, I was sure it was related to services or appointments of some sort). I explained I was her mother and asked what I could help her with. She told us she was calling from Bear Essentials Newspaper and had great news for Joan; she had won the holiday coloring contest for her age group and had won four tickets to the Snow Queen ballet performance. I ran into the living room with the phone and explained to Joan she had won. Her eyes lit up as she jumped and flapped her arms across the living room; it melted my heart. On a tough day when her emotions snowballed and left her feeling like she couldn’t do anything good enough, she was redeemed by a simple phone call and a coloring page of the nutcracker prince.

We told her we would take her younger cousin with us and took them both out to buy special outfits so they could dress up to go to the ballet. Although we were very nervous about Joan going into sensory overload, the performance was in a small theatre without a loud sound system. We made it through the entire show and we were able to celebrate her accomplishment and help her feel like a superstar. Before the show began, the director of the performance came out onto the floor and found us. She pulled Joan aside and told her how proud she was of Joan’s picture and that she had it hanging up backstage so all of the dancers could see it. A few days later we received an e-mail from the director, wanting to know what Joan’s favorite part of the performance was.

In a world where special children aren’t always included or recognized in a typical light, this time it seemed everyone went above and beyond make sure Joan was treated as anyone else would be. There were no discriminations or wayward glances; it was all in fun and freedom. Even though she didn’t do very well running the turkey trot, that same day she was blessed with someone else acknowledging that she did, indeed, do something well enough to receive an award.  

This “In Their Own Words,” is written by Melissa Bocconcelli of Arizona.

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.

Tune In – “Temple Grandin” on HBO

January 25, 2010 4 comments

Autism Speaks is proud to partner with HBO in promoting its new movie, “Temple Grandin,” starring Claire Danes. The movie will premiere on HBO on February 6. Check your local listings for showtimes. Be sure to check back and share your opinions and reactions to the film.

Share

Categories: Awareness Tags: , ,

In Their Own Words: Welcome to the Community

January 22, 2010 1 comment

“Is your son on the spectrum?”

The question was slightly jarring to me. My son and I had just walked into a gymnastics class for kids with autism. We had received his diagnosis only three weeks before, and we hadn’t shared our news with anyone except for close friends and family. It was the first time we had been anywhere that was just for kids like mine and I wasn’t really ready to talk to a total stranger about it.

“Yes,” I answered, trying to keep the conversation short.

“Hi, and welcome! That’s my son over there, and my name is Sandy. How old is your son? Do you live in town? How long have you known your son was on the spectrum? What was his diagnosis?”

I really didn’t want to answer her. I wasn’t even sure we belonged at this class, and all I wanted to do was pay attention to my son to see how he was responding to the class. I watched the other kids as they came in – six boys and one girl – and my first instinct was that we were in the wrong place. One little boy was crying, another was spinning in circles, and another one was running in all different directions. My son‘s not like that, I thought to myself. This isn’t us.

And then I looked at my Henry. I watched him hold tightly to his one-on-one helper’s hand as they walked on a low balance beam, but he wouldn’t look her in the eye when she talked to him. I watched him try to run away to jump into the comfort of the sensory foam blocks and become so focused on that foam pit that he couldn’t move onto anything else. I listened to him babble while he swayed back and forth on the rings, and saw the terror in his face when the noise level got up too high. The tears welled up in my eyes. We did belong here. This is the right place for him. We had found a safe place for him to exercise and develop his muscles in an environment that understood his special needs. For so long we had avoided the “regular” gym classes, music classes, and playgroups because of his behavior. No one here was giving me the usual disapproving looks we get when we’re out places and Henry starts to act up.

I took a deep breath and turned to the mom.

“Hi! My son Henry was diagnosed with PDD-NOS a few weeks ago. We do live in town. In fact, I’ve seen your son at the preschool that my son attends. How long has your son attended classes here?”

It took everything I had to have that conversation, but it was such a relief. This other mom was reaching out to make a connection – to find someone else who struggles on a daily basis like she does – something I myself had been desperate to do for weeks and months. I was instantly welcomed into a community of people who “get it.” No one batted an eye when Henry buried himself under the foam blocks at the end of class so he didn’t have to leave. I got comforting looks of understanding from all the parents and teachers when he had a major meltdown leaving the gym, and big thumbs up from everyone when we finally got our shoes on and went out the door. These were moms and dads who shared my daily difficulties of just getting out of the house. Finally we were somewhere that felt like we belonged.

“Will we see you next week?” asked the mom.

“Absolutely,” I replied.

This week’s “In Their Own Words,” is written by Alysia Butler of Hopedale, Mass.

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.

Young Professionals Winter Gala Raises Over $33,000

January 12, 2010 Leave a comment

More than 200 guests attended the AS2YP Winter Gala. Photo by Josh Wong.

NYC celebrity hotspot SL hosted more than 200 young professionals, on the evening of January 7, for the second in the Autism Speaks to Young Professionals (AS2YP) event series, raising over $33,000. The Winter Gala, hosted by event co-chairs Amanda Niederauer and Danny Ryan, offered guests an open bar, delicious appetizers by Abe & Arthur’s chef Franklin Becker and dancing to tunes spun by DJs Caleb Loftus and Nick Russo. The hundreds of guests complemented their fashionable attire, and raised autism awareness, by sporting the Autism Speaks puzzle pin.

The inaugural summer event, held at the Stock Exchange, sold out three days before the event and raised over $40,000. Danielle Yango, who attended both events, commented, “It was so great to be at events where everyone there was inspired by and engaged in the reason for being there – to raise autism awareness and to raise funds for Autism Speaks. Despite twenty-somethings not having a lot of money to spare, the event was filled with people wanting to do and give more. Change and improvement only happen when people take action, and this event is a prime example of people actively participating!”

Another guest, committee member Hallie Elsner remarked, “Despite the frigid temperature in New York City, it was amazing to see how many people made it out to support the first event of the year for AS2YP. It was a great way to kick off 2010!” Caite Kappel, another committee member in attendance, agreed, “It was great to have so many passionate people together in one amazing venue. The event went a long way to promote awareness of the disorder and I was thrilled to hear about all the money that was raised.  I can’t wait for the next event!” 

The event, described as “fun,” “hip,” and “trendy” by the guests in attendance attracted not only people who have a loved one with autism, but people who wanted to learn more about the disorder. Throughout the evening, a presentation on the television screens reinforced the CDC’s most recent findings that 1 in 110 children has autism.

Joshua Feldman, an active supporter of Autism Speaks and an ASY2P committee member  said, “After participating in both Autism Speaks and AS2YP events, I realize the attendees to both are instrumental in the future of autism awareness and research. I think the AS2YP Winter Gala was extremely successful, because while other events may raise more money near-term, this event opened the eyes of tomorrow’s benefactors who can support Autism Speaks and its goals in the future.” 

Event co-chair, Amanda Niederauer, hopes to expand the success of the Young Professionals events to other cities across the country. Amanda said, “I am so happy that the event was such a huge success. With the statistics so drastically increased to 1 in 110 children, our work is even more important. I think we have a terrific thing started with the Young Professionals series, and it is such an honor to be involved in spreading awareness to the next generation of parents.”

Special thanks to our co-chairs, committee members, guests, and sponsors – Manhattan Beer Distributors, Montecastelli Selections, RBS and Alacrity Financial.

Become a fan of AS2YP on Facebook at www.facebook.com/as2yp to stay up-to-date with events and check out event photos by Josh Wong. The AS2YP event series will return to the floor of the New York Stock Exchange this August.

Check out coverage and photos from the event:

CharityHappenings.org

Guest of a Guest

Scene B Seen, llc

What is Causing Autism Prevalence to Increase? – Part 2

January 8, 2010 Leave a comment

This part 2 of a 2 part series is from Michael Rosanoff and Andy Shih, Ph.D. who both work in the Autism Speaks science department. This second post is from Andy Shih. Both guest bloggers bios are below the post.

The release of the latest prevalence data by the CDC last week was important in two ways.  One, of course, is its implication for the role of environmental risk factors in autism. The other is how the finding enhances awareness and supports our call for more money for research.

The same can be said for our international epidemiology efforts. As part of our Global Autism Public Health initiative (GAPH), we have been funding and planning prevalence studies with our international partners and colleagues for the past several years. In South Korea, for instance, we are expecting the publication of the first ever prevalence estimate in early 2010. We also have prevalence studies in various stages of development in Albania, India, Ireland and Mexico.  All these efforts involve members of our International Autism Epidemiology Network.

In addition to the contributions these studies can make to our understanding of autism, they will also help raise awareness and inform policy development in parts of the world where affected individuals and families struggle with severe stigma, and in many instances, little or no support and care.  Another way to look at it is that when you conduct a prevalence study, you are basically asking members of the autism community to stand up and be counted. When that happens, especially if the number is anywhere close to the 1 percent figure we have here in the States, their plight and needs can no longer be ignored.

Author Bios

Andy Shih

Andy Shih, Ph.D. is the Vice President of Scientific Affairs at Autism Speaks, where he oversees the etiology portfolio, which includes research in genetics, environmental sciences, and epidemiology. He was responsible for the formation and development of Autism Speaks sponsored international autism research collaborations, the Autism Genome Project and the Baby Siblings Research Consortium. Andy also leads Autism Speaks’ international scientific development efforts, such as the Global Autism Public Health Initiative (GAPH). Andy joined the National Alliance for Autism Research (NAAR) in 2002.

Prior to joining NAAR, Andy had served as an industry consultant and was a member of the faculty at Yeshiva University and New York University Medical Center. He earned his Ph.D. in cellular and molecular biology from New York University Medical Center.

Andy’s research background includes published studies in gene identification and characterization, virus-cell interaction, and cell-cycle regulation. He was instrumental in the cloning of a family of small GTPases involved in cell-cycle control and nuclear transport, and holds three patents on nucleic acids-based diagnostics and therapeutics. Andy is a resident of Queens, where he lives with his wife, daughter and son.

Michael Rosanoff

Michael Rosanoff, MPH, is a member of Autism Speaks etiology team and manages the organization’s epidemiology and public heath research grants. Since joining the organization in 2007, Michael has been the staff lead in overseeing the International Autism Epidemiology Network (IAEN) and is part of the development team for the Global Autism Public Health Initiative (GAPH). He is also a member of Autism Speaks Grants Division, helping oversee the administration of the organization’s grant-making process for research.

Prior to joining Autism Speaks, Michael conducted independent research at the Gertrude H. Sergievsky Center, a clinical, epidemiological and genetic research center at Columbia University Medical Center focused on developmental disorders of the nervous system. His research background is in genetic and psychiatric epidemiology as well as behavioral neuroscience and neuroimmunology, with publications in the fields of epilepsy and depression. Michael earned his Master of Public Health (MPH) in epidemiology from Columbia University’s Mailman School of Public Health and resides in N.J.

Follow

Get every new post delivered to your Inbox.

Join 1,038 other followers

%d bloggers like this: