Emily Gerson Saines: “I Live With Autism 24/7″

Emily Gerson Saines: "I Live With Autism 24/7"

Emily Gerson Saines is the executive producer of Claire Danes‘ upcoming film Temple Grandin, a project about a woman with Autism that’s been a decade in the making. Once the vice president at the William Morris Agency, Emily represented actors such as Robert Downey, Jr., Scarlett Johansson, and Angelina Jolie – finding her the role in Girl, Interrupted that won her an Oscar. It was around that time that Emily’s son was diagnosed with Autism.

Co-founder of the Autism Coalition, now known as Autism Speaks, Emily Gerson Saines took on the moving film, Temple Grandin, the true story of a woman with Autism who became one the leading scientists in humane livestock handling. Emily opens up to Celebrity Baby Scoop about her son who has Autism and her hopes that this film will give parents of children with Autism “a renewed sense of hope.”

CBS: Why did you decide to make the movie Temple Grandin?

EGS: “When my son Dashiell was first diagnosed [with autism] in 1996, I felt very isolated from the world. At that time, the incidence rate of autism was only 1 in 10,000. A home computer and internet were a relatively new phenomenon. There was virtually no autism community locally, and it was so very hard to find any amount of support. People didn’t know how to respond to me, and they certainly didn’t know how to respond to him. I did my best to put on a happy face at work, but as a mother I felt hopeless. My son was out of control and each day slipped further and further into his own world. It was not a happy time in my life.

One day my mother called. She had been at Barnes and Noble and saw a book entitled Thinking in Pictures by a woman with autism named Temple Grandin. Not long after that, my grandmother called to say she had read an article by Oliver Sacks about Temple Grandin. They sent me the materials and then pestered me every day until I read them. This was a time when my energy, motivation, and spirit were at an all time low. Yet, I couldn’t believe what I was reading. Temple’s story brought me hope and Eustacia’s story (Temple’s mother) gave me direction and purpose. Parents of a child with autism everywhere need to hear it, functionally and spiritually. I knew this story had to be told and given my access as a talent representative in the entertainment industry, I felt it was my responsibility to make that happen.”

CBS: Tell us about your experience with Autism.

EGS: “I live with Autism 24/7. He [my son] falls somewhere in the high end of the middle of the Autism spectrum. He can only read sight words. He can spell his name most of the time, but mixes up upper & lowercase letters. And he speaks, but mostly in limited and short phrases. Through the years, he has seen ABA therapists, speech therapists, occupational therapist, we’ve been to doctors, and had all kinds of tests. I’ve asked people of every faith to pray for him.

And lastly, I co-founded the Autism Coalition which was a fundraising organization that raised millions of dollars for Autism before we folded it into Autism Speaks. Our goal was to raise much needed dollars for biomedical research, education, and awareness. Before awarding grants we needed to review proposals and thus we’re talking to top researchers and educators.

Looking forward, I plan to explore the area of housing for Autistic people. When my son was diagnosed with Autism, the incidence rate was 1 in 10,000. Today it is 1 in 110 people, 1 in 70 boys. Where are they going to live?”

CBS: Temple Grandin is a women who overcomes the barriers of Autism. In making this movie, do you feel children with autism are able to overcome their diagnosis and reach unthinkable goals?

EGS: “Temple has not overcome her barrier of Autism, but in many cases she has used some of her issues to great effect. I think it’s important that we all set goals for ourselves and as the parent of an Autistic child we need to help set those goals for our children. Sometimes goals are unrealistic, and sometimes they can be achieved, but they’re certainly not going to be achieved if you don’t push yourself or your child to be the best they can be.”

CBS: What message do you hope to portray in making this movie? Are you hoping to inspire parents of children with Autism?

EGS: “I hope people will walk away from this movie with a renewed sense of hope and a message to ‘stay the course.’ It can be challenging and I for one know, as the parent of an Autistic child, what a sacrifice that can be. You can never forget that with perseverance almost anything is possible.”

CBS: Do you think some parents of children with Autism will be upset with this movie and think that it sets up unrealistic hopes and dreams?

EGS: “It was our great desire that the message of this movie be one of inspiration and hope. This is Temple’s story, not my son’s, and not anyone else’s. It is specific to Temple. If I saw a film about Michael Jordan, I wouldn’t assume my typical son would have a career record of 32,292 points, 5,633 assists and 2514 steals.”

CBS: Why do you think the incidence of Autism has risen in recent years?

EGS: “The honest answer is that I don’t know what causes Autism and I don’t think anyone yet really knows. I suppose one day this pervasive term of Autism will be broken down into a variety of diagnoses with different characteristics and different courses of treatment.

Most of the research being done today is exploring genes and environmental factors. Autism was long overlooked in the area of research in part because of Bruno Bettelheim’s theory that Autism was the result of uncaring parents and thus thought to be a psychological disorder as opposed to a neurological disorder.

We have polluted our environment and thus polluted ourselves and our children. There are many that believe that this toxicity is a trigger. Me, I don’t know but I am grateful that we are raising awareness and in doing so raising much needed research dollars.”

Temple Grandin airs on HBO on Saturday, February 6 at 8:00 P.M. ET/PT.

Filed under: Celebrity Interview,Emily Gerson Saines,Exclusives

Photo credit: Emily Gerson Saines for exclusive use on CBS

11 Comments »»

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  1. Karen

    In my lifetime, I would like to see the word autistic phased out. Your son isn’t autism…he is a human with autism. He is a person first and the disability is one aspect of who he is. Until parents change the way we talk about this, no one else will. My son has high functioning autism. It is one small part of who he is. No one knows he has it until one of his quirks surfaces and even then, they aren’t sure. He should push and be encouraged to be all he can be and not hide behind the autism or define himself as autisic. I recently saw an article calling Grandin one of the most accomplished of autistics….I was ill. She is a very accomplished woman, who has autism. Despite her high-functioning disbility, she is brilliant and passionate and has used her strengths to achieve great things. That is what I hope for my son and for all children WITH autism.

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    • Jeff

      Karen, this movie is a celebration of people living with autism. I have a nephew who is “autistic” and a daughter with “asperger syndrome”. Call it what you want, but the end result is the same. In order to raise awareness, we need have a label to rally around. This movie is the single best movie demonstrating that autism is not a sentence, but in many cases a gift. We love our daughter and nephew immensely and we love what Temple Grandin and Emily Gerson Saines have created here.

      Reply
    • Mark

      Karen, if you watch the movie, you’ll see that Temple not only used her strengths to achieve great things, but used her autism as well. The movie does an incredible job of showing how Temple’s autism offered her a unique perspective that enabled her to achieve such success and accomplish so much. By acknowledging her autism, she was able to distinguish the advantages she had in terms of being able to see the world in a different life and therefore achieve things others may not have been able to achieve. I’m not sure what’s so wrong with that.

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  2. David

    Just saw the film. Congratulations Emily! Karen, I hate to break it to you, but your son is autistic. ‘Autistic’ is an adjective which describes a person with autism. If you don’t wish for your son to be called autistic, that is your choice, but being the brother of a boy with autism, I am personally offended that you are belittling Ms. Gerson-Saines’ accomplishments with her son as well as Ms. Grandin’s in the livestock industry.

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  3. abigail

    Bravo, Emily! I am the mother of a beautiful, non verbal, 3 year old autistic son. Thank you for getting this movie made and for bringing us encouragement for his future.

    Reply
  4. abigail

    Bravo, Emily! I am the mother of a beautiful, non verbal, 3 year old autistic son. Thank you for getting this movie made and for bringing us encouragement for his future.

    Reply
  5. Jeff

    Karen, this movie is a celebration of people living with autism. I have a nephew who is “autistic” and a daughter with “asperger syndrome”. Call it what you want, but the end result is the same. In order to raise awareness, we need have a label to rally around. This movie is the single best movie demonstrating that autism is not a sentence, but in many cases a gift. We love our daughter and nephew immensely and we love what Temple Grandin and Emily Gerson Saines have created here.

    Reply
  6. Ralph Colon

    A MOVIE THAT MUST BE MADE WHAT EVER IT TAKES

    Do you know someone who has Autism? Do your children have Autism? Did you know there is a mega population of Autism caused deliberately in the name of money, power and control; and you the parent are not the blame for your child’s Autism? Let’s make believe that a higher power just gave you a mission that must be completed or many children will perish, and you will answer for it in Judgment if you do not help complete this mission. A real mission impossible just been handed to you, because it’s a mission that can be done and not impossible. Maybe this is not making believe, do the right thing handing out this e-mail to movie producers.

    This country and the world are looking for the truth as to why this is happening to our children. From Top Officials to Hollywood Actors, the world is asking why we have a growing mega population of children being diagnose with Autism a few years after parents having a normal birth. It is not the children that are born with Autism at birth which is the problem, which is only a handful – it is the mega population that is created after a good birth – that is the question? Unbelievably it is not surprising to some on this epidemic that has allowed this to continue. It is a well known fact that sometimes something happens so critical that affects our country and the lives of children and families, but could never be expose to the public simply because the source with the information is poor with no money.

    I am not a scriptwriter, nor am I trying to get fame or trying to make a million dollars. I am not a professional writer, though I find enjoyment in writing, and write pretty well. However, I am on a quest to make possible my story into a movie to save as many children and family that I can in this country through a motion picture with an unbelievable true story. I am a grandfather rearing my grandchildren and people call me RC Grandpa. I know you have heard many, even thousands of stories about someone who is trying to get famous, or 60 minutes of fame, or that they have the big story of the century trying to become the next greatest. I assure you I am neither one, nor a want-to-be. I do however have a fascinating story that holds a great and very large platform in this country of importance and facts, not your Friday night action flick that holds only a small portion of this platform. A story that must told of top priority involving our children.

    I am looking for a movie producer who is willing to do things a little different from following his own protocol when it comes to excepting a movie script. One that is willing to read my book even though is not a movie script that he is use to handling for his acceptances to make a movie. By this, I mean a script can be created later after reading my story, bypassing a scriptwriter or an agent for the moment; I cannot afford any of them. I am a poor man, which is why I am force to do this in this way. I wrote a true story that will save many children in America from the horrible experience my grandbaby went through that other children should not. A story that the news media have been waiting for, for two decades against our children. A story that every family in America have been waiting for – for years. A story that the world have been waiting for in response to our children‘s epidemic of a special kind in this country and abroad.

    A story that needs to be made into a movie that will win your Oscar I‘m sure. I cannot publish the story because of money, and I cannot find or raise the money to publish, or I cannot find an honest agent to deal with a new author. I cannot find a publisher that is willing to look at my story unless I go through an agent. I am in the middle of a catch-22. Fact is, if I could publish this book – this book would be a best seller for years on end. This is the reason I am seeking out a movie producer to make the movie. I know this is not the right way of doing things, but because of the importance and the incredible true story behind it, I have no other choice but to seek a producer to make this movie about my grandson. To inform the American people, Movie Stars, Families on the facts of what has been going on for two decades underneath our noses, and how my baby contracted Autism is what this feature film in tales.

    A True story of a baby boy who refused to die after being infected with a infectious bacterium that destroyed his immune system and other vital organs, that made him Autism Spectrum Disorder today, where many other children have died over the same treatment and experiment that my grandbaby went through before landing in the hospital. For the many others that do not land in the hospital they carry the infectious bacterium day by day until the time limit is up when they are diagnosed with Autism between the ages of three and five year of age. It is a bacterium that is deliberately implanted on our children. In 1970, the numbers were 1 in 10.000 children being diagnose with Autism, making it somewhat rare. A couple of years later another estimate was done and it went to 1 in 2,500 children. In 2006 an incredible increase was recorded – falling to a whopping I in 166 children being infected. One year later 2007, it dropped to 1 in 160. In 2008, the number went to 1 in 150. In 2009, it went to 1 in 100. Today 2010 the number is now 1 in 90 children are being infected with Autism 3 to 5 years after a good birth. Why?
    Soon the numbers will be 1 in 50 children being infected with this disease after a good birth. I am not talking about the birth of Autism where a child is born with Autism. I am talking about the multi mega population of children that are born normal then later when they hit 3 to 5 years of age they are diagnose with Autism. There are many Movie Stars with children that have Autism; many of their children were born normal only to find out a few years later their children contracted the Autism disease – why? I know my story will slow down the production of Autism finally. My heart goes out to many people, especially to the Movie Stars and Famous People with much money, that not even money can answer the big question – “Why did this happen to my son or daughter after a good birth? The 9 months of torture and horrible events that we went through is a perfect 2 ½ hours motion picture that will serve this country well.

    After they almost killed my grandbaby boy that today he has Autism, after All Children Hospital saved his life, I conducted an in-depth research for three years, and what I found out will shock the world. This story of the horror and torture my grandbaby went through in 9 months must be told, and how we arrived at the heart of the problem of our children today being infected with this disease. Some of you movie producers out there, that do not give a dam about people like me with no money, or care for people with Autism, I say to you is time to have a change of heart. There has to be one producer out there that truly cares what I have here to save children’s lives. That can truly help me in producing this movie on what happen to my grandson, to prevent it from happening to another child and to stop the production of Autism in this country finally. I know why we have a mega population of Autism children in America – do you? I don’t care how long the movie will take to complete, and I don’t care about the money. It’s a movie that is needed in this country. Besides all the lies you have heard as to why this is happening to our children, I say to you remember that this is a country that have lived on lies throughout history; question is do you know the truth of the production of Autism? On the other hand, do you believe what you are programmed to believe? The true story of my grandson’s Autism is in no way directed in the direction of hurting, or discrediting our government or doctors, but only the way my grandson received his Autism. As far as the government and doctors knowing about this Autism Affect – history shows that they were already exposed by other families 30 years ago to this country, my story is just a wake-up call to the reality of the situation today, and of course to inform all families.

    I am a Christian man rearing my grandchildren. I see how evil this world is, Evil -vs- Good, Republicans -vs.- Democrats, Poor -vs.- Rich, Greed -vs.- Share, Church -vs.- State; an evil world, where good will go to heaven, and evil will surely go to hell. What I am asking here is no more than a small miracle from your heart for the good will of Gods Children. Of course, the rewards will follow, and maybe a small incentive will fall on my lap along the way if you choose it to be. Fact is, that you can make this happen to save millions of children from this disease – I guarantee it! If not interested or you do not make movies like this, then I ask you give this message to someone you know who may be interested, a young producer who wants to make a name for himself. Thank You and God Bless our Children.

    P.S.
    Please excuse my candor, my directness. I know is distasteful. If you had a magic
    crystal ball in your hands, you will see everything my family and me have gone
    through. From the experiment on my grandbaby that they give to all children’s that
    almost killed him. The pain, suffering, and torture my grandbaby went through, the
    Government’s rejection to help us, the agents who are trying to steal my research and
    story lines to create their own book, to the greed we have in this country. This has angered me a little, that you cannot blame me for feeling the way I do. A story of facts. I truly believe in my heart that my grandbaby’s story and my research will save millions of
    children in America. All I need is for one of you movie producers to have the heart of God. I will send you the complete book and all you have to do is read the chapter of “The
    Bloody Drive”, so you can see what it took me to search out and learn the truth. It is this chapter “The Bloody Drive” that this movie should be the starting point.

    Ralph Colon 863-385-2030 / 863-255-2946 Cell. ralph2007@embarqmail.com

    Reply
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  8. Cassandra Sanchez

    Is your child has a sign of autism? Try to practice this autism treatment and find out many things that they understand and use. If you would like to know more about how to cope with autism visit at daejha.com

    Cassandra Sanchez http://www.daejha.com

    Reply
  9. The point is what you do for the child to better the situation, and to look for what gives you result.

    Reply

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