If anyone knows how hectic life can get – WE DO! That’s why we have created the Autism Speaks Weekly Whirl to fill you in on all of the highlights of the week! The last thing we want is for you to be left out of the loop! Please share with friends and family to spread the word about all of the exciting things going on in the autism community. Keep in mind, these updates aren’t limited to Autism Speaks — we will be featuring news from across the community.
A Funny Affair Honoring Tommy Hilfiger
On Monday December 5, 2011 Autism Speaks Co-founders Suzanne and Bob Wright and New York Center for Autism (NYCA) Co-founders Laura and Harry Slatkin honored iconic fashion designer Tommy Hilfiger for his commitment to increasing awareness and support of the autism community at A Funny Affair for Autism – a star-studded evening of fashion and comedy that helped raise over 1.3 million dollars for individuals with autism and their families.
Blue Tie Blue Jean Ball
On December 1, the Los Angeles Chapter held the inaugural Blue Tie Blue Jean Ball. Over 700 people packed the House of Blues on the world famous Sunset Strip to hear the incomparable, beloved and ever gracious Sarah McLachlan sing some of her biggest hits. She was introduced by autism mom and Grammy Award-winning singer Toni Braxton. The show was hosted by comedian Sinbad, who also handled the live auction with humor and zip. Other music performers were “American Idol” contestant Brooke White, Lucy Schwartz and Diane Birch. Attendees included Autism Speaks National Board Member Holly Robinson Peete with her husband Rodney Peete, Matt Dallas, J.K. Simmons, Mark Salling, Ed Asner, and “Parenthood” cast members Mae Whitman, Sarah Ramos, Max Burkholder and Miles Heizer.
Autism Speaks Headed to Albania
Hear from Autism Speaks President Mark Roithmayr as he shares about his trip to Albania for the opening of the Albanian Children Foundation’s Regional Centre for Autism. Liri Berisha, M.D., and her husband the Prime Minister, Mr. Sali Berisha, took every opportunity to note that without Autism Speaks and Suzanne and Bob Wright, none of this would be possible.
QBE $75,000 Gift to Autism Speaks
On December 7, 2011 Autism Speaks received a $75,000 QBE Foundation Grant from QBE Americas. The grant will fund the development of the Employment Tool Kit. We are thrilled and thankful for their generosity!
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.
“Communication Breakdown: Hacking Autism Provides a Dose of Technology” is a highly personal representation of an exciting event, and a rare and detailed glimpse into an autistic mind. Holman’s account is unprecedented in autism journalism. More than a simple, factual record, it is an artistic statement – one autistic interior on display. The situations and dialogue within this story are colored by the author’s heightened self-awareness – reality becomes a mirror to reflect the isolated inner world of autism. This world is rarely communicated to an audience. Holman offers autistic journalism, seen through the narrow lens of a pop-culture soaked imagination. This is journalism in technicolor.
Alex was growing frustrated. “The lighting in here is awful! I can’t work with this! And why are all these people so noisy? Can’t they see we’re filming?!”
It isn’t easy to be an obsessive autistic. Our lives are often governed by a single, narrow pursuit, and anyone with a separate agenda is simply in our way.
“What are they doing that is so important?!” Alex fumed. “We’re making a movie! Who invited all these people?”
“Um, those are the developers,” I said. “I think they are kind of important.”
Andy Shih sat before us, quietly observing our executive dysfunction.
“I have an idea!” I declared, climbing onto a nearby table. I kicked aside a stack of brochures, and lifted an imaginary bullhorn to my lips. “QUIET ON THE SET!” I bellowed. My library voice can be heard by anyone within a mile radius. You can imagine the thunderous volume of my announcement.
The room fell silent. I hopped down from the table, quite pleased with myself. “I’ve always wanted to say that!”
I took a seat before the camera, excited to begin the interview.
“Get a little closer to Andy,” Alex said, squinting into the viewfinder. I slid closer, bouncing and fidgeting.
“Closer…” Alex said.
“Closer?! You want me to sit in his lap?”
“Please don’t…” Shih stammered.
I had never conducted an onscreen interview. I felt like the dude from Inside the Actor’s Studio! I waited for Alex’s cue.
“Alright, make it happen guys! One… two… three… action!”
My first interview went rather well – I barely interrupted at all. The footage will be available when Alex wraps up post-production. Alright, Plank, stop reading this article – you’ve got a movie to edit!
I thanked Shih and wandered off to abduct someone important for our next interview. Luckily, I was distracted by a group discussion in the dining area. Marc Sirkin, Peter Bell, and Steve Silberman were gathered together in heated debate.
“Do I hear opinions?” I said, plopping into a nearby seat. “I’m sure you’re all wrong.”
“Nice to see you again,” Steve said. “We’ve been discussing autistic self-advocacy.”
“Uh oh,” I groaned. “The last thing we need is a pitchfork wielding mob parading through Alex’s shots.”
Marc laughed. “It is a controversial subject.”
“Has anyone seen my soapbox?” I said, looking about.
“Oh, I’m already standing on it… Black and white thinking is a recognized symptom, and one which casts a troubling shadow over autism politics. We’re not characters in some autistic version of Star Wars. This isn’t about heroes and villains… though I wouldn’t mind seeing Peter here cross light sabers with Ari Ne’eman.”
“Do I get to be in the movie?” Marc asked.
“You’re a storm trooper… but your scene was cut.”
“Autism Speaks has made mistakes. We’re all learning. Autism was poorly understood when I was a kid. I lived 24 years without a diagnosis. Awareness is spreading. It is only natural to see more people being diagnosed. We finally know what to look for.”
“Aren’t you offended by the notion of a cure?” Steve asked.
“I don’t know what that means, and I’ll give five bucks to anyone who can offer a simple explanation.”
No one made a sound.
“Anyone? Mark? Bueller…? Bueller…?”
I’d have to remember this little challenge the next time Alex needed a quiet set.
“Good, I’m broke anyway. Autistic pride is great, but we need to remember those who can’t advocate for themselves, or communicate at all. The promise of a cure brings hope to many devastated families.”
“False hope?” Steve asked.
“Maybe, but people need hope. More importantly, they are willing to pay for it. We may never find a cure, but there is no telling what will be discovered along the way. Knowledge is a powerful asset. I’m not opposed to genetic research, but I’d like to see a greater emphasis on services and support – that’s why I’m sitting here with you fine people!”
The conversation continued for some time, everyone offering valuable insights. I realized, quite suddenly, that precedents were being broken all around me. For far too long, the autistic community has been relegated to either side of a massive, ideological divide. In that moment, we were unknowingly constructing a bridge. This was truly an unlikely meeting of minds, and a rare dialogue.
I thought of Kat. “Has anyone seen my girlfriend?”
I found Kat doing homework in a corner of the lobby. Her frustration was evident.
“You want to come get some more pictures?” I asked.
“I got some already,” she said, without looking up.
“Well, we could always use more.” I was trying my best to include her.
“Kat, what’s wrong?”
She sighed and closed her book. “You know,” she said, “you’re a lot like Alex. I guess I never truly realized…”
“Never mind,” she said, reopening her book.
I stood awkwardly for a long, silent moment. “Oh, there’s Phil,” I said. “We have to interview Phil!”
It seemed the day would never end, and I didn’t want it to. I sat down for many more interviews and conversations, all of them fun, fascinating, and fleeting…
I was living my dream, and feverishly taking notes, a longstanding outsider recording his moment on the inside, trying desperately to capture a dream and keep it forever. I knew I would wake up soon enough. Like Cinderella, I was afraid to enjoy an expiring spell. The stroke of midnight would not reveal my elegant coach to be a pumpkin, but I knew my press pass would look an awful lot like a nametag when the day was over.
I wanted to share my happiness with Kat – it was too abundant for me to keep to myself – but she was nowhere to be found.
I ran into Marc, who told me the development teams had completed their applications. “Have you seen Kat?” I asked.
“Didn’t she tell you? She walked back to the hotel.”
I followed the crowd into the conference room and slumped into a chair. The developers presented their applications, brilliant technological tools which would enable communication for countless autistics. I tried to pay attention, but I was confused and exhausted, lost in my own communication breakdown. One developer presented a bonus application, which he had created on his own while the rest of his team worked together. That was me, always doing my own thing, lost in my own obsessions, while the rest of the world worked together.
I sat on the edge of Alex’s bed. “You feeling alright?” he asked.
“People come and go,” I said. “At first they like me. They want to help me. After awhile they realize that I’m not going to change. They get angry… then they leave.”
“I’m glad you’re my friend,” he said.
“Thanks, Alex. I’m glad you’re my friend too.”
What else could be said? It had been a long day.
The San Francisco airport was nightmarishly crowded. The line through security seemed to stretch on forever. “Kat, I really don’t like lines. I’m going to tell them that I’m autistic so we can go through the short line.”
“You’re going to play the autism card just because you’re impatient?” Kat scoffed. “No one here likes lines any more than you do.”
Ashamed, I followed Kat to the end of a massive, slow moving crowd. “This isn’t so bad,” I said, attempting to be cheerful. But it was bad; the line never seemed to move and the swaying herd of travelers was closing in on me. I began shaking my legs and flapping my hands.
“Stop it!” Kat hissed. “You’re embarrassing me.”
“Sorry… I just… I really don’t like lines.” I could feel the sweat on my forehead. I couldn’t breathe.
I was on the verge of a meltdown by the time we reached security. Kat went first, making it effortlessly to the other side. I was alone.
“Sir!” a large, threatening security guard shouted at me. “Your bag won’t fit.”
“What are you talking about?! They said I could carry it on!”
“You can carry it on, but it won’t fit through the x-ray tunnel that way. You have to turn it around.”
“Huh?” I was baffled. I couldn’t make out the guard’s words. I stood there stupidly, my heart beating out of my chest.
The guard grunted, and stormed past me. He lifted my bag, rotated it, and set it back on the conveyor belt.
“I’ll need you to remove your hat,” he said, sternly.
“My hat?!” I really hate taking my hat off. Hats are a sensory comfort, and I feel vulnerable and anxious without one.
“Sir,” he thundered, “I need you to remove your hat!”
“I HEARD YOU!” I screamed. The entire airport fell silent. I’m surprised I wasn’t arrested on suspicion of terrorism.
I didn’t speak to Kat until we had boarded the plane. We found our seats, and I regained my composure. Finally, I turned to her. “Kat?”
“A relationship, I think, is like a shark. You know? It has to constantly move forward or it dies. And I think what we got on our hands is a dead shark.”
“That is a quote from the movie Annie Hall,” Kat said. The disdain in her voice made me shudder.
“You know it is. It’s from the scene where Alvy and Annie break up on the flight back from California. Are you using stolen Woody Allen material to break up with me?”
“No, I’m not trying to break up with you. I just don’t know what to say. I’ve never fought with a girl on a flight back from California.”
“Life isn’t a movie!”
The plane’s air conditioner was on the fritz. The heat was oppressive. Passengers were fanning themselves with barf bags. “This must be what the Amazon feels like,” I muttered. I caught sight of a stern looking stewardess several rows ahead of me. “I WANT MY MONEY BACK!” I shouted towards her.
Giggles erupted throughout the plane. “You’re not nearly as funny as you think you are,” Kat scowled. “Stop embarrassing me.”
The passengers howled with laughter. “I hope you’re happy,” Kat said.
“One of us has to be, at least once in awhile.”
“You said you were afraid of living in a world that didn’t include me, but you never did! You’re too wrapped up in your own world!”
“That isn’t fair. I warned you about this. I tried to make you understand.”
“Oh, so now it’s my fault? I didn’t research autism enough? I wear a puzzle piece around my neck every day!”
Kat was crying now. I knew that I should comfort her, but I was too angry.
“No, you did plenty of research,” I said, sarcastically. “You put on a necklace and now you understand me!”
Kat’s face went blank. I couldn’t read the emotion in her eyes. Was she sad? Angry? Scared? Her hands trembled as she ripped off the necklace and threw it to the floor. I watched a tiny silver puzzle piece dance down the aisle… as everything faded out around me.
My parents drove me to the emergency room. Kat had left me at the airport. My typically inaccessible emotions had built up over the trip. They came erupting to the surface, all at once, in a meltdown to end all meltdowns.
I paced frantically, up and down the ER lobby, flapping my hands, gnashing my teeth, and breathing heavily. I was finally sedated.
I spent the next five hours crying in a hospital bed. My mother sat beside me, stroking my head. “Don’t leave me here,” I begged. “Don’t let them put me in a mental hospital again. Don’t leave me…”
“I’m not going to leave you,” she said. “I’m never going to leave you.”
“But Kat left me.”
“I’m sure she had her reasons,” my mother assured me. “Relationships are tough. She is young and confused. She didn’t mean to hurt you.”
I thought of the closing line in Annie Hall, “After that it got pretty late, and we both had to go, but it was great seeing Annie again. I… I realized what a terrific person she was, and… and how much fun it was just knowing her; and I… I, I thought of that old joke, y’know, the, this… this guy goes to a psychiatrist and says, ‘Doc, uh, my brother’s crazy; he thinks he’s a chicken.’ And, uh, the doctor says, ‘Well, why don’t you turn him in?’ The guy says, ‘I would, but I need the eggs.’ Well, I guess that’s pretty much now how I feel about relationships; y’know, they’re totally irrational, and crazy, and absurd, and… but, uh, I guess we keep goin’ through it because, uh, most of us… need the eggs.”
Kat was right, life isn’t a movie. It doesn’t always follow the script you’ve written in your head.
Life is difficult… but love is worth it. I know that I am loved, and that I love in return. I may have difficulty communicating my feelings, but I feel deeply nevertheless. I have learned that no matter how irrational our emotions may be, they are always valid. We must understand if we are to love, and we must communicate if we are to understand.
In an article called Where Have I Been All My Life, written shortly after I met Kat and received my diagnosis, I expressed the beauty and pain of living on the autism spectrum. ”To have Asperger Syndrome is to feel as if you roam the world in an antique diving suit, cut off from everyone. Though something of what others say can be interpreted, their words are muffled by a devastatingly beautiful, frightening and complex symphony. This has been the source of both my lifelong joy and solitary despair, for as much as I would like to share this music, it seems no one else can hear it.”
I love who I am, and I will keep following the music. I may be marching to the beat of my own tone deaf drummer, but the music makes me happy. Perhaps, one day, I will find the words to share this music with someone else.
“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 firstname.lastname@example.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.
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 email@example.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.
This post is by Peter Bell is executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his wife, Liz, reside in Pennington, New Jersey with their three children. Their eldest son, Tyler, has autism.
As the summer winds down, it is a good time to reflect on the Garden State’s accomplishments in addressing the needs of its citizens with autism and outline my back to school wish list. New Jersey has found itself in a leadership position in serving residents affected by autism spectrum disorder (ASD), by establishing some of the best private and public schools serving students with autism. (Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders.)
Current, forward-thinking policies have New Jersey on track to secure our legacy due to several other factors: the passage and enactment of autism insurance reform legislation in 2009 for evidence-based interventions, continuation and support for a Governor’s Council on Autism Research, establishment of an Office of Autism, passage of First Responder’s Training, and an adult service initiative on housing that will be a catalyst for affordable and appropriate housing options for adults with developmental disabilities. In addition to the formal mechanisms that help to improve our human services infrastructure, there has also been a thoughtful and concentrated effort to embrace the autism community’s challenges by Gov. Chris Christie, the First Lady and other administrative officials.
Notwithstanding all of these important efforts, are they enough to really support the impending needs of people with autism as they transition into adulthood? Today, it is estimated that there are approximately 1.5 million Americans with living with ASD throughout the country, with about 80 percent under the age of 21. According to the Centers for Disease Control, New Jersey’s one-in-94 autism prevalence rate is one of the highest in the nation. Using simple math, we have at least 25,000 fellow New Jersey residents, most of them children, living on the autism spectrum.
Creating a New World
Some people have described the wave of children with autism that will need adult services in the coming years as an impending “tsunami” of required services. But using the tsunami metaphor implies a disaster, and I believe we have the opportunity to create a different world — a world in which adults with autism will be fixing our software, making our keys at Home Depot, carefully tending their gardens at their homes, volunteering at local fundraisers and making New Jersey a great place to live as important contributors to our society and taxpayers. Far too many adults with autism and other developmental disabilities are unemployed, sitting at home and isolated from their peers when they age out of their educational entitlement.
So my back to school wish is to review our intent and our mandate to prepare this group of children for the rest of their lives. Congress, through the transition services mandate of IDEA (Individuals with Disabilities Education Act,) wanted students with special education needs to transition smoothly to meaningful adult outcomes. The act defines transition services as “a coordinated set of activities for a child with a disability that is designed to be a results-oriented process… to facilitate the child’s movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation…”
Certainly, this is a powerful piece of legislation that directly establishes the broader competencies for passage from adolescence to adulthood. But once the educational entitlement of IDEA ends (at the end of the academic year in which the student turns 21 in New Jersey), there is an even greater need for individuals and families to be educated on the supports afforded to adults with developmental disabilities. Most families are disheartened to know that there are no guarantees for adult services. There is a dearth of programs for adults with specific needs and the current system is beyond capacity.
One of the most significant challenges is funding for services. Funding can directly impact the ability for a provider to expand services to meet the growing demand and can also affect the ability to recruit and retain direct support professionals. The primary long-term funding source for adults with developmental disabilities is Medicaid’s Home and Community Based Waiver Services (HCBS). Currently, these are being revised to provide a more global waiver for all services and that reform is happening in New Jersey. As services become more self-directed, individuals and families must insure that HCBS waivers are written and implemented to serve adults in those services that best meet their particular needs.
Medicaid waiver services are based on eligibility and the availability of resources, and have limitations in service capacity. According to the state Division of Developmental Disabilities, there are approximately 10,081 individuals enrolled in our Medicaid waiver program and the wait list is over 8,000 (including 4,000 in the “urgent” category). It’s not hard to see the unsustainability in a service system that is unprepared for the number of adults aging out of their educational entitlement. Most families will face a crisis before they receive services under HCBS. It makes perfect sense to coordinate a collaborative system of supports that is defined prior to students aging out of their entitlement.
The Transition Tool Kit
Even though we have defined what type of transition services an adult with autism needs (Autism Speaks recently developed a Transition Tool Kit for adolescents with autism), there are limited services that have training and a specific focus on the needs of this growing population. While we are making great strides in understanding the needs of individuals on the spectrum, there is still a great deal we don’t understand about autism. As our leadership debates reforms in our federal programs, we are comforted to know that our New Jersey delegation in Washington understands the challenges and opportunities that befall the autism community, and is taking action. On September 30, the Combating Autism Act of 2006 (CAA), essential legislation that is central to the federal government’s response to the autism health crisis, will sunset. U.S. Senator Robert Menendez (D-NJ) and Congressman Chris Smith (R-NJ) have both introduced legislation that will reauthorize the CAA by extending this legislation at current funding levels. Longtime champions of the autism community, their continued support on legislation so vital to the needs of people on the autism spectrum is gratifying. The research performed under the CAA has advanced, and will continue to advance our understanding of how to help individuals with autism and their families negotiate their lives.
Government can’t do it all. The private and philanthropic sectors have to do their part. Autism Speaks, the nation’s largest autism science and advocacy organization, has invested in autism research in New Jersey through grants to Rutgers, UMDNJ and Princeton University. In addition, the organization has made community service grants to organizations across the Garden State that are directly delivering services in innovative and replicable ways.
We recognize that government cannot solve all the issues alone and we are poised and ready for the challenge ahead of us by highlighting new and innovative employment opportunities, identifying affordable housing that adds value to neighborhoods, and keeping our eye on the prize that all New Jersey residents have the opportunity to work and thrive in our state. Working collaboratively, the public and private sectors can and must rise to the occasion and meet the needs of New Jersey’s current and future adults with autism.
To read full article, please visit NJ Spotlight.
In a single generation, autism has become one of the most common developmental disabilities, affecting an estimated 1.5 million Americans. With so many children diagnosed in the 1990s, over the next decade, hundreds of thousands of them will reach adulthood. How do we handle the upcoming needs of the adult autism community?
On September 7, Congress will begin considering the renewal of the Combating Autism Act of 2006. Signed into law by President George W. Bush, it authorized nearly $1 billion for combating autism spectrum disorders through public awareness and enhanced federal support for research and treatment.
And there’s a lot that we can do from a private sector standpoint as well. To talk about the steps autism advocates recommend, Alison Stewart spoke with Peter Bell, executive vice-president of Autism Speaks, and the father of a teenage son with autism.
For more information, please visit Need To Know on PBS.
Tune in to PBS’s “Need to Know” for a segment on the challenges facing adults with autism and their families, as well as the desperate need for services that will help them live productive and fulfilling lives. The segment will feature an interview with Autism Speaks Executive Vice President for Programs and Services Peter Bell, who discusses the ongoing needs of adults with autism and the call for Congress to renew the vital Combating Autism Act (CAA). Due for reauthorization on September 30, the 2006 CAA represents the federal government’s commitment to support autism research, services and treatment. To learn more, visit www.autismvotes.org.
“Need to Know” will air on the following major PBS stations this weekend. This list is not comprehensive, so please check your local PBS schedule for a date and time near you.
WGBH-TV Boston: Friday, July 29 – 10:00 p.m. EDT
WTTW-TV Chicago: Sunday, July 31 – 9:00 a.m. CDT
KERA-TV Dallas-Fort Worth: Saturday, July 30 – 8:00 p.m. CDT
WNET-TV New York: Friday, July 29 – 8:30 p.m. EDT
WHYY-TV Philadelphia: Friday, July 29 – 9:00 p.m. EDT
KQED-TV San Francisco: Friday, July 29 – 10:00 p.m. PDT
WETA-TV Washington, DC: Friday, July 29 – 10:30 p.m. EDT