The YAI Network Autism Community

Eric Duquette delivers the salutatorian address at his Rhode Island high school's commencement ceremonies.

This event passed nearly a month ago, but it is still worth reading about.

A Rhode Island high school senior, class salutatorian, gave the traditional salutatory address at commencement.  Not all that remarkable, until you consider the fact that Eric Duquette has autism and did not speak before age 5.

Duquette’s speech was both humorous and serious, drawing on the ways autism was expected to hold him back in life.  His ultimate message, however, was not about autism or disabilities, but how each of us must define for ourselves our futures.

To read the full article and watch the video of Duquette’s speech, please click here.

Andrea Thomaz, right, and Nick DePalma in 2009 with Simon, a robot being developed at Georgia Tech. Above left, Simon evaluating objects.

This past weekend, the New York Times featured a very interesting article on robotics, and how the nascent technology is being used in classroom settings to assist students on the spectrum.

To read the full piece, click here.

Jeff Stimpson

Today’s post is by Jeff Stimpson, author of the books Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism.The convenience store is a dangerous place to take Alex. I should’ve remembered that the other day as he shot past me and his little brother Ned into the pretzel aisle.

“Pretzels?” he said.

Not the big bag, I tell him, pointing to the $3 bag of Utz dark specials. He can go through one of these bags in about an hour, one after the other, the crumbs and salt raining at his feet as every cockroach in our apartment building perks up his or her antennae. Not to mention there’s little nutrition in even a big bag of Utz dark specials.

“No big bag,” I tell him.

“Pretzels! Pretzels! Pretzels!” He reaches for the big bag; each of his “pretzels!”’ ricochets off the walls of the store with more force.

I came in here making it crystal that he could get a little bag of pretzels. Perfectly clear, over and over, and Alex replied each time that he understood. I told myself that even if I had a typically developing 11-year-old, I’d probably still be laying down the law to a head just nodding me out.

I wasn’t embarrassed in the store. I modeled myself on Jill’s behavior in the middle of one recent night, when at about 3 o’clock I heard her firmly and quietly telling Alex to get back to bed. I wasn’t embarrassed. I’m too far gone in retail settings to be embarrassed.

Alex keeps insisting on the big bag. I must take him out. “I told you no big bag!”

He sprawls twice, once actually laying his head down in front of the skyscrapers of Kleenex, and once right in front of the security guard. “Hey,” says the guard;  I can tell by his tone he means, “Behave!” and not “I’m calling social services.”

Courtesy Hypnotic Aubergine via Flickr

“Alex,” I say outside, while typically-developing Ned looks on silently and shuffles his feet as if he wants to evaporate. “Do you understand why we left the store?”

“Left the store…”

“Do you understand why I took you out of the store?”

“Out of the store…”

“I took you out of the store because you were having a fit. And you knew we were going in there and not getting the big bag of pretzels. You may have a little bag of pretzels.”

“The little bag is yellow,” Ned says. “Tell him he can have ‘the yellow bag.’”

“You can have the yellow bag, Alex.”

“Yellow bag,” he says. What does this mean? Since I’m such a big believer in getting right back on the store after something like this, we head back in. As we pass the security guard, he smiles at us.

The same thing happens. Big surprise. Out we go. The guard doesn’t look at us.

Ned is even quieter on the walk home. “Ned, what do you want me to say?” I ask.  “That you have no right to be embarrassed? That you every right to be embarrassed?

“You were telling him two different things,” Ned says. “He doesn’t understand ‘big bag’ and ‘little bag’.”

I think he does. I think he lured me into the store by appearing to agree with the idea of buying a small bag of pretzels when he really was planning to just get the bigger bag. Meltdowns in the autism world aren’t quite the same as meltdowns outside that world, and even as he sprawled in front of the tissues and heads began to pivot, I understood Alex, and I was in a tiny way kind of proud.

Our very own Dr. Charles Cartwright, Director of the YAI Autism Center, appeared on the CW to discuss this vitally important issue. Let us know what you think!

Jaden rallies with his parents in front of City Hall.

Jaden, the little boy with autism who is raising awareness about the 2010 Central Park Challenge, has his work cut out for him.

Though only 3-years-old, Jaden joined his parents and YAI Network staff, at a rally on Tuesday on the steps of City Hall urging the New York City Council to continue its $1.575 million city-wide autism initiative serving families not eligible for other public support. Staff from more than 20 other service providers, parents of children with autism, individuals of all ages and New York City Councilman Mark Weprin also participated in the rally.

Because autism has reached epidemic proportions, the YAI Network must plan ahead to meet the needs and services of this ever-growing population. The Central Park Challenge is one way that we do this. While research continues for a cure, there’s evidence that early intervention, detection and treatment enhance the quality of life of children on the spectrum. Parent education and awareness is critical to ensure that these children receive the appropriate services.

Thanks to the funding, the YAI Network over the last year was able to host free autism family support and training programs for parents of children on the spectrum, a full-day conference on autism, featuring some of the nation’s most prominent authorities, a full-day conference entirely in Spanish to train families, caregivers and professionals in the field, and many other programs.

Jaden takes to the microphone!

“I feel so lucky to be involved with YAI and have access to these great conferences and workshops,” said Sandra Vasquez-Lugo, Jaden’s mom. “This initiative lets people know there’s help out there and that’s so important for families dealing with autism.”

“The City Council’s autism initiative funding has been so critical in ensuring that parents learn about and gain access to the services that can make a tremendous difference in their child’s quality of life,”  said Marco Damiani, Senior Director of Clinical and Family Services for YAI/National Institute for People with Disabilities, a member of the YAI Network. “Until there’s a cure, this funding is important to assure families that there is hope.”

Support Team Jaden’s fundraising efforts today!

Yesterday, the Huffington Post featured a great opinion piece by Neil Greenspan, a clinical pathologist from Cleveland. It is a critique of many of the Autism Awareness Month stories that were featured in the popular press during April. And not just any critique. Greenspan definitely has perspective and real-world experience with people who have autism. Read his piece and let us know what you think!

In the United States, April was National Autism Awareness month. Whether or not media coverage of autism increased over the past few weeks, there was already a great deal of coverage. Unfortunately, much of that coverage has been focused more on raising awareness than advancing understanding. A recent interview on National Public Radio (NPR) illustrates some of the recurring weaknesses of many of these articles, radio segments, and television features. Read more…

Everyone at the YAI Autism Center is mourning the loss of Dr. Stanley Greenspan, who is beloved throughout the field of autism for his kindness and compassion, as much as for the innovations he made in the treatment of autism spectrum disorders. He passed away on April 27. Dr. Greenspan’s legacy will doubtless extend for generations and continue to help countless children and families.

We extend our sincerest condolences to his family and loved ones during this difficult time.

Here is a much more thoughtful and comprehensive write-up of Dr. Greenspan’s life:  http://www.washingtonpost.com/wp-dyn/content/article/2010/04/28/AR2010042805731.html

Jeff Stimpson

Today’s post is by Jeff Stimpson, author of the books Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism.

Alex pushed Jill the other night, when he wanted to put plastic animals on an already crowded kitchen counter. Jill lost her balance and almost stumbled; it wasn’t as if he’d actually almost knocked her down, but still she turned to me with wide eyes.

“I feel like my days with him are really numbered,” she says. He’s nearly 12, and though slender and small for that age he’s still pushing 70 pounds. Jill isn’t a tall woman, and suddenly Alex comes up almost to her nose.

His plastic animals on every clear surface. His hands down his pants until we tell him to stop and just do that when he’s alone. Blasting Elmo during family events. Alex is getting bigger. It’s all that damned milk and ice cream, and the melting away of the years, I guess. Suddenly Alex and his family are coming to the time of talking about when maybe he doesn’t live with us anymore. Doesn’t, or can’t.

Time passes faster than we'd like to think

A few years ago, reactions to our saying such a thing bordered on anger. Family members pledged to take him themselves, or hugged our shoulders and assured us that we were just having bad moments and that we’d soldier on, like all parents. Now relatives who’ve known Alex a long time or who know autistic kids themselves are also starting to use phrases like “never live independently.” When, during a recent family dinner, I voiced my plan for him, the table got silent.

“Are there options?” Jill’s cousin whispered.

Years ago, this part of the country had an option called Willowbrook, a state school where people like Alex were chained to walls, starved, caged – and, from what I’ve heard, that was on good days. Geraldo blew the lid off Willowbrook in 1972. (Geraldo is slated to speak about this at YAI’s International Conference on Monday, April 26.) I do know that, assuming there are any budgets left half a decade from now, Alex will qualify for day programs, which are places adults with developmental disabilities go to continue learning about getting jobs, getting dates and all the other stuff that parents like me are often terrified they’ll wind up teaching their grown-up kids. Most of the day programs I’ve seen seem well assembled.

Day programs don’t feed the bulldog of a place to really live when autism becomes too much for a family, however. We’ve thought maybe a residence for him as a grown-up. We’ve also thought maybe a residence for him before then. I tell myself that I’ve always thought it a convention of labor unions that we all stay at home until we’re 18. Jill went to college at age 17; people the world over often go to boarding schools in their early teens, or even earlier. The Royal Navy once had midshipmen age 5.

Jill’s cousin – who just dropped dead at 53 – went the residence route with his autistic son a few years ago. The boy is now 16, and big. (“Maybe he got too big for his mom to handle,” Jill wonders.) He went into a residential school two years ago; the extra time to build relationships beyond his dad must have come in handy for the boy when his dad died.

Years do melt. Last time I saw him, my older brother looked at me and remarked how he’d had a “quick life.” Jill doubts she’s going to make 70. “The supreme dread for us, and for every middle-aged parent of a special needs adult, the singular ache that dries the mouth and races the heart at 3 a.m.,” writes blogger Glen Finland on the Autism Speaks site.

We’ll never grow old. There’ll never be another Willowbrook.

Life planning is something that most of us would rather not think about. But for parents of people with significant disabilities, it’s never too early to start. This year, YAI’s International Conference will feature two sessions on life planning. See page 17 of the conference brochure for details.

Jaden with his mom and dad

This year, a little boy named Jaden is helping the YAI Network to raise awareness and spread the word about the Central Park Challenge, our biggest community event of the entire year!

Jaden is just like a lot of 3-year-old boys. He loves playing sports, partaking in a game of musical chairs and watching the movie Happy Feet.

When it comes to learning new things, Jaden is bright and catches on quickly. He is dynamic and outgoing with grown-ups, including his parents and teachers. But making friends with kids his own age doesn’t come so easily. That is because Jaden has an autism spectrum disorder, which makes it hard for him to relate to his classmates. Thanks to his teachers at the YAI Network’s Forest Hills West School, Jaden is beginning to climb out of his shell and connect with the world around him.

“I can’t even begin to tell you how much progress Jaden has made over the last few months. Thanks to YAI, my son now has the ability to have a conversation back and forth and tell me what he needs,” said Jaden’s mom.

There’s still a long way to go, but Jaden is building the foundation for future friendships one conversation at a time. And he will have countless opportunities to make friends this year, as he brings the message of the YAI Network and the Central Park Challenge to millions of people in his community.

Watch this video with Jaden and his new friend Sherri Shepherd!

It’s not too late!

Here at the YAI Autism Center, April is a big month! We have Autism Awareness Month, the International Conference and we’re gearing up for the Central Park Challenge, our biggest community event of the year, on June 5.

The International Conference features more than 130 sessions and 300 presenters. As always, the session focused on autism spectrum disorders are stellar. Download the brochure or register today!

Here are a very few of the highlights: