Riverside joins Autism Speaks in educating and exemplifying community compassion
April is Autism Awareness Month. It doesn’t matter if you are or aren’t personally affected by autism, this month we have to opportunity to show our community support of families and individuals affected by autism. This month is dedicated to helping educate the public and inspire us all to live compassionately, and help each other out in any way we can. Autism is a neural development disorder that affects how the brain processes information by disrupting the mind’s ability to connect and organize sensory stimuli, verbal communication and cognitive recall. Thanks to Autism Speaks, a world-wide organization helping raise awareness and research opportunities to prevent the disorder, April is full of rallies, events, walks, fundraisers and nationwide community-based support of individuals and families.
Children with autism suffer from impaired socialization and communication skills. Symptoms of the disorder often appear before the age of 3. It is still unknown as to what causes autism, but factors may include environmental pollution, genetic bias and early exposure to toxins, poisonous metals or pesticides.
The good news is that with early diagnosis and proper therapy, children born with autism can overcome their difficulties and learn valuable skills that can help them function properly in our modern society. Some have even been known to recover completely, but the level of therapy and care that is necessary to achieve this state often takes many years and thousands of dollars. Autism Speaks (HYPERLINK “http://www.autismspeaks.org/”www.autismspeaks.org) is a worldwide, non-profit organization dedicated to the understanding, research and prevention of autism. The Southern California chapter of Autism Speaks cares for a large population of the Inland Empire, including 21,700 people within a 20-mile radius of Riverside and 19,280 within a 40-mile radius of Banning.
In addition to instruction and other services, Autism Speaks is also a political organization, focused on representing citizens born with autism, defending their rights and prodding our politicians into taking care of a populace that would otherwise go unnoticed and abused.
Matt Asner, the executive director of Autism Speaks, is dedicated to making sure the public knows about autism, and how the disorder can hurt families on an emotional and economic level. “One in 88 children are born with autism,” he says. Asner believes that a major problem is being ignored, and the statistics from experts at the Centers for Disease Control and Prevention support his cause. “Let’s say one in 88 children were to go blind in America. There would be uproar,” he says. “It wouldn’t take this long to have a national plan on autism.”
“It cost an average family $50,000 to take care of a child with autism,” Asner says. Like any disease, with a growing population, and without proper understanding and treatment, those numbers can only grow exponentially. “We are going to wake up one day and it’s going to be too late,” Asner says. “We have to deal with this problem right now.”
“In order to get anything done on a government level, you have to make noise,” says Asner. “Because of federal grants and donations, Autism Speaks can sponsor seminars throughout Southern California, including areas like the Inland Empire and Southern California, providing badly-needed assistance in the form of community support, educational services and monetary compensation.
“Aside from the grants we give out on a national level in research and family services, we also provide community grants specifically designed to fund programs which benefit the families of autism,” Asner says. “Anyone can apply for a grant.” We gave five grants out last September to young adult services programs. We are going to give out double this year what we gave out last year.”
One great way Autism Awareness benefits families across the Inland Empire is through its website, which contains a wealth of information, community forums and other educational programs to help parents adapt, cope and learn.
Asner wants to make sure the word gets out about its specialized services, many of which are free. “If you go to our website, there are some incredible tools anyone can use to see if their child has autism. If you are a concerned parent we show you exactly what signs to look for,” he says. They also offer “toolkits,” downloadable action plans telling parents exactly what to do to help their children and help themselves, free of charge.
“If your child is diagnosed, we have a kit that will take you through the first one hundred days,” Asner says. ”We also offer it in Spanish. We also have a transition toolkit for children who are aging into adulthood and out of the system.” By offering a road-map, Autism Speaks gives parents the route to a better future. “I wish more people knew about them. They are an incredible resource for anyone who is in need.”
How can our readers help contribute to the cause, in honor of World Autism Awareness day? By donating money, showing up for workshops, and going to the website for Autism Speaks to learn the real science behind autism, and how treatment helps.
It was a very difficult time for Asner when he learned about his child’s disability. “When my first son was diagnosed, I didn’t know what to do. I was angry that it was happening to me,” he says. “I honestly credit Autism Speaks for getting me out of my hole.” Asner says that for him, what happened was a life-changing experience, but it wasn’t all for the worse. As a father and as a man, the challenge gave his life additional focus and depth. “I was a producer and director out in Hollywood, but now I’m doing this full time,” he says. “I truly do believe that this will make this world a better place, for my son and everyone else.”
Monica Holloway is the critically-acclaimed author of the bestselling memoir Cowboy & Wills, the simultaneously uplifting and heartbreaking autobiography of the mother of an autistic child, and how something as simple as a pet puppy can help someone overcome anything. Holloway’s story touched a lot of hearts, and her book was the Mom’s Choice Awards Gold Recipient in 2010.
She wrote Cowboy & Wills while raising her own autistic child. “I wanted people to go through the journey with us so that the reader could open the book with the diagnosis and be in this whole world of dealing with autism, the miracles and downfalls and frightening things, so that they would understand the journey my life took with my son,” Holloway says.
She hopes that by reading her book, other parents can save themselves a lot of mistakes. “I want any other person who had an autistic child to learn what I learned. Maybe I’ll help them to avoid any pitfalls, but if they can relate to me and my husband that would be great.”
Holloway had a lot of help, and the work paid off. “My own son was much lower functioning and eventually moved up, so we were grateful. The book is a love letter to my son. I wanted to tell him he was the best thing that ever happened to me.”
On April 29, Holloway will be participating in an event at the Riverside Art Museum called “Strong in Broken Places.” Dedicated to World Autism Awareness Day, the event will feature various speakers who will share their experiences and talk about how parents and family members can do more.
The title, “Strong in Broken Places,” a reference to both the famous quote made by Hemingway and when Holloway’s own child broke his leg. “When I got the news, it just broke me. But I became stronger. Years later, when Will was learning how to ride a bike, we were very worried because of his autism,” she says.
After a biking accident that left him with a broken elbow, the doctor gave Will a useful piece of education. “He told Will that where his bone was broken would eventually be the strongest part of his body. That really encouraged him,” Holloway says. “He felt like he had survived something he could have never survived before.”
As a speaker at many events that focus on helping people with autism, Holloway is glad that parents don’t have to feel alone, anymore. “I mostly talk about how isolated I felt when Will was diagnosed. A lot of parents who were ahead of me reached back to help me understand and move forward,” she says.
“I like to talk about not isolating yourself and speaking to other members of the autistic community. I also talk about what people can do to get funding. Speech therapists, occupational therapists. . .they all helped,” she says. “Will was in therapy at 18 months old. He needed all of these other things. But the more people that joined our team, the stronger we all felt. So the cliché about a village raising a child is true,” Holloway says.
“I come from a small town in the Midwest. It’s a tiny farming community of about 35,000 people. They are educated people, but they had not been exposed to autism.” After Holloway published her book, the response was endearing. ”I was thrilled to hear from people from my hometown on Facebook,” she says. “They just had this terrible notion of what autism was, but they told me that because of the book they fell in love with Will.”
There are still a lot of things we don’t understand about autism, but nonprofit organizations like Autism Speaks and individual activists like Monica Holloway are helping the world to know more about this potentially life-crippling disorder. Children are being born with something that they can overcome through therapy and proper care, but the cost is not cheap and the process takes time. But hope is out there, and with the help, donations and compassion of people all over the world, many people now have a future they never could have had a few decades ago.
“Strong in Broken Places” at the Riverside Art Museum, 3425 Mission Inn Ave., Riverside, (951) 684-7111, HYPERLINK “http://riversideartalliance.org,”riversideartalliance.org, www.monicaholloway.com. Mon, Apr. 29. 6PM.