On July 19, a luncheon was held in Los Angeles to honor actor Ed Asner and his son Matt. Phillip Hain, Executive Director of the Los Angeles Chapter opened the program by giving an overview of what the chapter does in the community and talked about some of the local events. Attendees then heard from Dr. Clara Lajonchere, Vice President of Clinical Programs, who talked about the advances in science that have been made by Autism Speaks and its predecessor, Cure Autism Now, and how the Autism Genetic Resource Exchange (AGRE) has helped researchers be more efficient and collaborative with their studies. Marianne Toedtman, Associate Director of Family Services, talked about her challenges as a mother of a son on the spectrum, Family Services programs, and the current state of Family Services at Autism Speaks, particularly the Baker Summer Camp Program.
Ed talked about his involvement with Autism Speaks and how much work has been done since his son Charlie was diagnosed more than two decades ago. He implored the guests there to support Autism Speaks’ efforts in advocacy, family services, and science.
Matt told the attendees that when he was a teenager he was mad at his dad a lot, because his dad was the kind of guy who always took a stand on something and stuck to it, no matter what the cost was, to himself or others. And often the price he paid was very high. But now he realizes that his father set an example. Having both a brother and son affected by autism, Matt has become a passionate voice for our kids on the autism spectrum, fighting for their right to a fair and equal education in Los Angeles public schools. He noted that attending the Los Angeles Walk Now for Autism Speaks a few years ago gave him the feelings of hope and empowerment to help others.
Councilman Tom LaBonge presented Ed with a proclamation from the city of Los Angeles and Phillip gave Matt a piece of artwork created by a teen with autism, as a thank you for his continuing efforts and support.
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 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.