This post is by Phillip Hain, the West Region Director for Autism Speaks.
Ever since my 19 year old son, Andrew, was diagnosed with Asperger Syndrome at the age of 3½, I’ve learned—and shared this sentiment with other parents—that we measure success and milestones on a different chart. I had recently one at the Love Ride, an annual motorcycle event that for 28 years has raised money for various children’s causes. Autism Speaks was fortunate to be the beneficiary for the 2nd consecutive year.
A traffic accident on the freeway caused a major delay getting to the ride’s endpoint and the young man scheduled to sing the national anthem was stuck in traffic. It quickly became apparent he wouldn’t make it in time, even while we were already stretching the program as much as we could. I had this idea that made me feel like the stage manager in an old Hollywood musical movie: Andrew could go on in his place! He loves to sing, has done the national anthem before at one of our Walk Now for Autism Speaks events, has no fear of performing before a crowd, and definitely enjoys being the center of attention.
When I presented him with the idea there was a big surprising response: he didn’t want to do it.
I was really shocked and asked him why and his response had all the indications of being a teenager rather than anything borne out of genuine fear or stage fright. He said, “I’m more into singing pop music now. That doesn’t interest me.” I was simultaneously amused and annoyed so I just tried to reason with him, explaining that he would be doing a big favor because they really needed someone. The next few minutes were a series of him partially agreeing, then changing his mind, my continued pleading mixed with patience, until he finally said, “Ok, I’ll do it.” I wanted to make sure he was comfortable and he said yes.
When he strode onto the stage, you would have thought he was a pro. He started singing and two lines into the song, he broke for a moment to say, “Everybody join me.” Talk about working the crowd for maximum effect! He finished the song to the sound of rousing applause and cheers. (I later read on a blog post about the event that his performance was the highlight of the afternoon.) He was justifiably proud and said, “I’m glad I did it. I made the right decision.”
Many kids—and adults— with autism have an affinity for music and other arts. It calms them and provides the opportunity to express themselves in creative ways, and breaks the stereotype of children completely locked in their own world and unable to emerge. That was certainly confirmed in the Emmy-winning documentary “Autism: The Musical.”
It is with that spirit which inspired our Los Angeles chapter to create an event rooted in music which we are calling the Blue Tie-Blue Jean Ball. It will be a fun, casual, anything-but-boring evening to celebrate music and lift our souls at the House of Blues Los Angeles on December 1. Guess? Jeans has signed on to be our presenting sponsor. We’re fortunate that the incredible Sarah McLachlan has agreed to perform as the headliner at our inaugural show. A few more special guests have strongly hinted that they will drop by for the festivities.
We’re also honoring a fantastic rock music photographer named Rob Shanahan, who has taken some absolutely stunning pictures of the biggest names in the industry. Some of his subjects include Sting, Dave Navarro, Sheila E. and Barry Manilow. And the foreword to Rob’s new book, Volume 1, was written by Ringo Starr. It doesn’t get more impressive than that. Rob’s work will be on display that night and he’ll also be signing books. You can get a sneak peek at his website www.robshanahan.com.
So, if you live in the Los Angeles area, or just made the snap decision to be here December 1, you will treat yourself to an amazing night. And if you have friends or relatives nearby, make sure they plan to attend. You don’t want to be the one who hears them complain, “Why didn’t you tell me?”
The event website is http://events.autismspeaks.org/bluetie.
Check out this great video by CelebrityWire here!
I don’t watch a lot of television but one show that I’ve started viewing regularly is “Parenthood” and it is definitely because of the autism story. I really enjoyed a recent episode that dealt with the theme of parents trying to relate to their children, but found themselves thwarted by external forces.
Knowing the characters and the actors who portray them isn’t critical to understand how their experiences are universal. Sarah, the single mother, wanted to bond with her daughter Amber, who was clearly embarrassed to bring her new wealthy friend over because of the differences in their parents’ incomes and lifestyles. Kristina wanted to help her daughter Haddie win the student body election but pushed too hard and ultimately antagonized her. Crosby wanted to spend time with his son but got passive resistance from the boy’s maternal grandmother. Adam tried to get his son Max interested in anything they could share together but found no response despite his multiple attempts.
Although these examples sound very much alike, Adam’s challenge was very different from those of his siblings because their obstacles existed in the form of another person and his was a thing—Max’s autism. In one scene we witnessed the extended Braverman family of siblings, cousins and grandparents casually spending time and interacting together while Adam watched Max engrossed in a video game, completely unconcerned with his surroundings. No words were necessary to express the sense of emptiness Adam felt as he painfully wished his son played with him, or anyone for that matter.
It was a powerful moment that parents of children with autism can easily relate to and my wife turned to ask if I ever felt that way. My immediate response was, “Oh, yeah.” My son, Andrew, will be 18 in less than a week and even though he’s made amazing progress from when he was first diagnosed with autism and Asperger Syndrome at 3½, we will always have concerns.
A few nights after this episode aired we were at a Bat Mitzvah celebration and Andrew was having a fantastic time. Even though he doesn’t connect socially with typical kids his age, he manages to have fun because he really loves music and is totally uninhibited dancing at parties. It’s much like parallel play that’s typical of younger kids—a dozen teens were lined up doing the “Cha Cha Slide” and Andrew was doing the exact same moves ten feet behind the group.
At one point in the evening I saw another boy walk up to him and then Andrew pulled out his wallet and handed this kid a dollar bill. I thought this was odd and went up to Andrew and asked what happened, and he said the boy wanted money to ask the DJ to play a specific song. (That seemed to be true since I saw the boy trying to hand over the money but the DJ refused.)
Regardless of the other kid’s intent, which I can’t say was benevolent since he asked someone he just met—a naïve young man who appeared to be an easy target—for money, I had to explain to Andrew that he can’t just give money to people who ask him. It was not an easy situation because Andrew gets agitated when he’s caught in a situation doing something he shouldn’t, even in this instance where his motive was pure.
Later that night I saw that same boy come up to Andrew and give him the dollar back. Andrew proudly walked up to me and flashed the bill in my face saying, “See. I got it back!” Well, I suppose that’s nice, but what’s going to happen when something similar happens as Andrew is walking down the street by himself as an adult. Will a complete stranger take advantage of his open disposition?
I think about Adam Braverman’s frustration with his son’s Asperger Syndrome and even when he admitted that wanting to connect with Max was more about fulfilling his own needs than his son’s, that doesn’t make it any easier. Once again I can relate, but it’s more than that. Andrew connecting with others in socially appropriate ways will be important for keeping a job and all the other interactions we generally take for granted because we learn them intuitively.
As a parent of a son with autism, I’m always excited to see stories in the media that can increase the understanding and awareness of autism in the general population. “Parenthood” does an excellent job of just that in a very realistic way, and we are proud to be honoring Executive Producer Jason Katims with an award at this year’s Acts of Love event.
Autism Speaks’ 8th annual Acts of Love will take place November 4 at Creative Artists Agency in Los Angeles. Scheduled to appear this year are Phil Abrams (Parenthood, The Island), Amy Brenneman (Private Practice, Judging Amy), Connie Britton (Friday Night Lights, Spin City), Tim Daly (Wings, Private Practice), Christopher Gorham (Harper’s Island, Ugly Betty), Lauren Graham (Parenthood, Gilmore Girls), Peter Krause (Parenthood, The Truman Show), Donal Logue (Terriers, Blade), Joe Mantegna (Criminal Minds, The Godfather: Part III), Mary McDonnell (Battlestar Galactica, Donnie Darko), Alyssa Milano (Charmed, Melrose Place), Mark Moses (Mad Men, Desperate Housewives), Craig T. Nelson (Parenthood, Coach), Lorraine Toussaint (The Soloist, Saving Grace), Brian J. White (Stomp the Yard, Daddy’s Little Girls).
Tickets are $250 for general admission and $1,000 for VIP seats that include a special pre-show reception with the cast. Doors open at 6:30 p.m. for a silent auction featuring a selection of contemporary artworks curated by Bruce Helander. The performance begins at 7:30 p.m. and the evening concludes with a dessert reception for all guests. For more information or to purchase tickets, visit www.autismspeaks.org/actsoflove or call (323) 297-4771.