This “In Their Own Words” is written by Matthew Asner, a film and television producer. He has a son with autism and has dedicated himself to working with charitable organizations such as Autism Speaks and fighting for the rights of those with special needs and in special education with his organization, Save Special Education. Asner was nominated for GQ’s The Better Men Better World Search. If he wins the competition, Autism Speaks will receive $10,000.
“We must accept finite disappointment, but we must never lose infinite hope.”
- Dr. Martin Luther King Jr.
I begin and end this post with quotes about hope. It is hope that drives me. It is hope that brings life to every second of my day. With so much hardship around us these days, hope is in short supply. We need our friends and neighbors now more than ever.
Four years ago my son was diagnosed with autism. Of course, this was devastating to me and my wife. I have a brother with autism and I had seen the constant struggle by my father and his wife to make sure my brother had consistent and appropriate help. I knew firsthand that the diagnosis of autism meant that raising my son would require a different, more demanding manner of care than that of his older, typical brother. But, when one of my son’s doctors told me that she didn’t believe he would be able to care for himself in the future and that we should make arrangements for his care, it was as if a gun went off in the examination room – BANG! She had just killed my hope. Murdered it in cold blood.
I walked to my car and sat for a while. I was close to tears and I knew my wife was crying in her car. A horrible thought came into my head. Why couldn’t she have told me he had cancer? At least then we would have a fighting chance. I walked around in a hopeless cloud for a year or so.
After attending my first Walk Now for Autism Speaks event, I realized that there were a world of people who wanted to feel the same way that I wanted to feel. My hope had been restored. The Walks made me a believer in the phrase “there is safety in numbers.” This is when I began to get involved with the special needs community.
As invigorating and empowering as those Walk days are, unfortunately, in daily life the autism community is fractured. Race, class, disability and, most of all, fatigue fracture us. All of this makes it difficult to come together and stand as one. At an Autism Speaks Walk, we stand as one. The time has come for us to do this every day.
As you all know, our economy is in terrible shape. As a result, the special needs community has seen programs slashed or eradicated completely, making it increasingly more difficult for families to deal with the additional stress. In these trying times, it is imperative for us to come together as a group.
Next time you are at a Walk, look around you. There will probably be 10,000 to 20,000 people there. We are an important voice. We are a passionate, strong group. And I hope being together makes you feel the same way it makes me feel. When I am at a Walk and I talk to people and take part in this energizing union of people with at least one common issue, I feel motivated. I feel power. Most of all, I feel hope.
It is up to us to take what we feel on those Walk days and incorporate it into our daily lives. If we are truly going to change the world and make it a better place for our children, we have to do it together. We have to join groups, and write to and demand representation from our elected officials, school superintendents and school boards. We have to know our rights and fight for what we are legally entitled to when we go into IEP meetings. We must find ways to be less intimidated by the process.
This can be our time – a time where we all come together and stand for the rights of our children and our rights as parents of a child living with autism. If we are alone, we are without hope. Together, we can change the world and make hope live.
“Hope is the companion of power, and mother of success; for who so hopes strongly has within him the gift of miracles.”
- Samuel Smiles
“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 email@example.com. 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.
Last November, I ran the New York City Marathon as a member of the Autism Speaks team. Unfortunately, I was sick before the race but ran it largely because I had raised money from donors and didn’t want to disappoint them or myself by not running the race. But it was a struggle.
I tried to make it up by running the New Jersey Marathon last week. Unfortunately the weather did not cooperate (it was in the 80s and the humidity was almost as high) and I ended up running a difficult half marathon, rather than a full one.
This morning I ran my own marathon. This time both my health and the weather cooperated (the first was good; the second was cool and dry). I wore my Autism Speaks running shirt and vowed that if I finished without stopping I would make a donation. In fact, I finished without stopping and ran my best time ever. So, I’m enclosing a check payable to Autism Speaks in the amount of $2,620, in recognition of the success marathon that I ran with Team Autism Speaks on my back. Keep up the great work!
This “In Their Own Words” essay is by Alan Vinegrad, of Short Hills, N.J.
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.
If you would like to run with a group passionate about raising awareness, we want you to Team Up with Autism Speaks! Space is quickly filling up for the ING NYC Marathon 2010. Please visit http://events.autismspeaks.org/nycmarathon for complete details.
Happy Friday, everyone! I hope you had a great week and are ready for the weekend ahead.
Here are some ideas …
Interested in autism research? International Meeting for Autism Research (IMFAR) brings together the world’s top scientists who will share their latest research into autism’s causes, treatments and diagnoses. It is currently taking place in Philadelphia and we will be updating media coverage and blog posts by scientists here.
Want to Walk Now for Autism Speaks? On Saturday, we have Walks in Cincinnati, Mt. Laurel (N.J.) and Wheeling (W.Va.). Sunday, we have three more in Atlanta, Ligonier (Penn.) and Paramus (N.J.). If you live near one of these towns, visit walknowforautismspeaks.org for more information and join us on Walk Day! We promise a fabulous time for you and your family.
Set your DVRs! On Saturday night at 8 p.m. EDT, NBC is re-airing this week’s episode of “Parenthood”, Team Braverman, which featured members of the family participating in a Walk Now for Autism Speaks event. Check your local listings for show information. Tune in on Sunday, May 23 at 9 p.m. EDT to NBC’s season finale of “The Celebrity Apprentice.” In the LIVE finale “Final Two Brew” Autism Speaks board member, parent and actress Holly Robinson Peete faces off against Poison’s Bret Michaels. Visit http://www.nbc.com/the-apprentice/ for more information.
I hope you and your family have a wonderful weekend!
Many thanks to Peter Krause, Monica Potter, and Max Burkholder of NBC’s “Parenthood” who filmed this PSA to raise awareness about autism and Autism Speaks. This PSA, in the “The More You Know” series, aired after Tuesday night’s episode, Team Braverman, which featured members of the family participating in a Walk Now for Autism Speaks event.
Nantucket Elementary School fifth-grader Rourke Barsanti has Asperger Syndrome and he is a wonderful self-advocate and fundraiser. Last year, he did a PowerPoint presentation about people with autism and presented it to his third grade cluster. This year, he raffled off a whale that he made and donated the proceeds, $62, to Autism Speaks.
Just like Rourke, his family (mom – Sydney, dad – Bob, and brother – Beck) is very supportive of Autism Speaks and the Nantucket Autism Speaks Resource Center. His mom, Sydney Fee Barsanti, is a co-chair of the Nantucket Walk Now for Autism Speaks and a veteran team captain.
Tune in to NBC’s “Parenthood” next Tuesday, May 18 at 10 p.m./9 Central. The all-new episode, Team Braverman, features members of the family participating in a Walk Now for Autism Speaks event.
Peter Bell, Autism Speaks’ Executive Vice President, was on set in Los Angeles and penned a blog post about his experience. Earlier this season, we spoke with Jason Katims, the show’s writer and executive producer. He tells how having a 13-year-old son with Asperger Syndrome inspired one of the show’s main storylines.
Check your local listings for show information.
UPDATE: Watch the entire episode here on Hulu. Also, the episode is being re-broadcast on Saturday, May 22 at 8 p.m. EDT. Check your local listings for show information.
Watch “The More You Know” PSA starring the cast of “Parenthood,” which aired after the episode.
This guest post is by Peter Bell, executive vice president for programs and services at Autism Speaks. Peter and his wife, Liz, reside in New Jersey with their three children. Their eldest son, Tyler, has autism.
On April 15, when most people were scrambling to file their tax returns, I had a once-in-a-lifetime opportunity that will hopefully make a profound difference for Autism Speaks and the autism community.
As many people know, the new NBC hit series “Parenthood” has a story line that involves a family coming to grips with their son’s recent diagnosis of Asperger Syndrome. For any family that has gone through the experience of having a child diagnosed with an autism spectrum disorder, you quickly realize just how easy it is to relate to the Braverman family. The show has beautifully captured the range of emotions our families go through during this difficult time.
So, when the producers of “Parenthood” approached Autism Speaks recently and asked if we would be interested in helping to film a future episode that would include an Autism Speaks Walk, the answer was without reservation “yes, of course!” To add icing on the cake, they also invited us to provide a real person to play the role of the Autism Speaks representative on the stage of the walk – that’s when this became a personal journey for me.
With just a few days notice, I was off to Los Angeles. Lucky for me, my body was still on East Coast time for the 7 a.m. call time. After signing all the necessary paperwork (I think I’m now a member of SAG), I was taken to the make-up trailer. There were about five chairs with make-up artists doing their magic on various actors. My second stroke of luck came when they seated me next to Monica Potter who plays Kristina Braverman, mother of Max.
I was told by some other “autism moms” at Autism Speaks to tell Monica how much they love her performance as the take-no-prisoners mom of Max. I faithfully shared this sentiment as they were removing the curlers from her hair and another make-up person was dabbing my face with something that felt cakey. It was sort of a surreal moment for me but I think she realized that this was the highest form of a compliment one can get, besides an Emmy, of course.
After a quick change into my wardrobe (special walk t-shirt, khaki pants and my own running shoes), it was time to report to the set. The walk venue was set in a community park not far from Century City. Since the series takes place in Berkeley, California, they had to be careful not to have any palm trees in the background. They transported us from the trailers to the set in a van and this is where I met Max Burkholder, the incredible child actor who plays Max Braverman, the young boy with Asperger’s. Naturally he was with his real mom and we enjoyed a nice conversation about his role and how he gets into character. Although his character is only eight years old on the show, he is actually 12 years old.
Once we arrived on the set, I had a chance to meet Peter Krause who plays Adam Braverman, Max’s dad. Fortunately, we connected on many levels. In addition to sharing our common name, we are both dads. Although Peter K does not have a child with autism, it was obvious that he takes great pride in having an eight-year-old son. We talked a lot about autism, what is known scientifically (and not), what’s behind the large increase, how families cope, etc. He was genuinely interested in learning everything he could about the condition and what families go through. I complimented him on his ability to capture the feelings that many dads go through when their sons are first diagnosed. Peter K was remarkably kind and fun to be with for the rest of the day.
Next – rehearsal. Since they were recreating a walk, which often attracts thousands of participants, they brought in more than 200 extras to create the feeling of a Walk Now for Autism Speaks event. I was really impressed that they were able to replicate the look and feel of our walks – then again this is Hollywood. After a few run-throughs it was time to “roll film.” Our scene was only about a minute long but we ended up doing it about 15-20 times. They needed to film it from several angles. Each time was a little different which allowed for some creative interpretations in how we delivered our lines. Which take they will use in the final cut is anybody’s guess but the amiable director, Lawrence Trilling, seemed pleased.
Perhaps the most memorable aspect of this experience was how wonderfully kind the cast and crew were. Each person was truly amazing. They were upbeat, deeply interested in autism, compassionate and energetic. Executive Producer/Writer Jason Katims, who has a teenage son with Asperger Syndrome, was on set for much of the day and really is the creative juice behind the Braverman family’s autism story line. He confers with autism experts who are always on hand to make sure everything is as authentic as possible.
The episode is expected to air in mid-May and is the 12th of 13 episodes this season. The show has not been renewed for the fall yet, so please be sure to watch and tell all your friends and family to tune in. Autism Speaks will provide more information as the air date nears.
As for this dad, I’m back on the East Coast living my own wonderful version of “Parenthood.” I’m thankful that the world is learning more and more about autism spectrum disorders and the joys and challenges it can bring to an entire family via this groundbreaking series.
Who was recently spotted wearing the Autism Speaks puzzle pin? Food Network’s Giada De Laurentiis!
We received the following e-mail and photos from Lehigh Valley Walk Now for Autism Speaks committee member, Gloria Vollert: “We went to King of Prussia Mall and Alex (my 12-year-old son who has autism) got to meet Giada de Laurentiis from Food Network. He gave her an Autism Speaks pin and she immediately put it on and shook his hand and thanked him. He was veryyyyyyy pleased. He is ‘never washing his hand again.’ She was very nice and sweet to him. She took a lot more time with him than the other people going through the line. She also posed for a photo which she did not do for anyone else. Overall it was a very nice day.”
The idea of a student chapter emerged following the record-breaking inaugural 2008 Columbus Walk Now for Autism event held at The Ohio State University. A very dedicated Walk committee member and university employee, Jessica Beauvais, began the process of recruiting student leaders and establishing an official student organization. The mission of this group is to engage the campus community (faculty, staff and students) through education, awareness, friendship and fundraising to positively affect the lives of those struggling with autism spectrum disorders.
With an energetic faculty advisor and student officers, the chapter held their first official monthly meeting in February 2009. The students invited leaders in the Columbus autism community, including developmental pediatricians, state representatives, parent advocates and ABA specialists, to speak to their group to learn how their efforts could make the largest impact for Central Ohio families affected by autism spectrum disorders.
The students quickly realized a void in connecting student interventionists with families who are in need of their services. They developed a group website where students post their interests in working with families and parents connect with these students to fulfill the behavioral interventions for their child.
The chapter was on a mission to heighten autism awareness at Ohio State, advocate for insurance reform in Ohio and raise funds for the Walk. The advertising, outreach and fundraising committees launched their efforts in April 2009 and held many awareness and fundraising events throughout the remainder of the year. Their goal was to raise $2,000 for their OSU Students Walk team for the 2009 Columbus Walk. Through t-shirt sales, ribbon sales, cosmetic parties, dorm awareness and fundraising the students tripled their goal with over $6,200 in only six months! They are among the top 15 teams in dollars raised for the 2009 Columbus Walk Now for Autism Speaks.
Led by president Julie Cecys, the students are hard at work developing their fundraising and awareness campaigns for April 2010, educating one Buckeye at a time. They are also looking forward to participating in Autism Speaks U and igniting a friendly fundraising competition among their Big 10 rivals.