He fought for our country and cannot obtain insurance to treat his autistic son. Sounds like a script written for a TV movie? Sadly, this movie is real and the characters are not paid actors. The facts are chilling and beg for national attention.
Sounding the Alarm, which premiers today, July 15th on Netflix, and later this summer on Amazon Prime and itunes reveals a personal and powerfully sensitive portrayal of families living with autism. Each story is representative of the trials and tests that families face; nevertheless, each story, like snowflakes, is uniquely different.
I have seen this film three times; as a parent of a child with autism my tears invaded every pore of my being. As a writer, I was in awe of Producer John Block and Editor Bruce Burger’s tender respect for the integrity of twelve families, who graciously allowed their lives to be filmed. Finally, as an advocate I feel compelled to urge people to watch this film, and spread the word of autism.
Reported in 1975, the diagnosed cases of autism were 1 in 5000. The numbers continued to rise and in 2001, cases were documented as 1 in 250. Now, the numbers are staggering at 1 in 68.
Marine Hardy Mills was serving in Faloosha. Injured, when a mortar round hit him; he suffered injuries including damage to his arteries, a collapsed lung, a hole in his back, and his spleen. He was decorated for his service for our country. Following seventeen surgeries in three different countries, decorated Marine Hardy Mills retired. What accompanied his retirement was the sobering fact that his son Shane, who is severely affected by autism, would not be covered for therapy, so vital to his progress. “The next thing; I’ll have to sell my medals” said Hardy Mills.
I was struck by the impact of Marine Mills’ words. On film, he was calm and collected, as he sat with his wife and two children. We see Shane, flapping and moving in sync with the powerful force of ritualistic behaviors of autism. When I met the Mills family at the Tribeca Film Festival, I bent down and spoke to Shane directly: “Hi Shane”. He took my hands and held them to his face, as if I could translate what he was feeling. My heart hurt.
Sounding the Alarm is an apt title. Sometimes, autism can really hurt.
Financial support for the film was provided by The Mel Karmazin Foundation and Suzanne and Bob Wright, co-founders of Autism Speaks. The Wrights are grandparents to Christian, who suffers from a severe form of autism. They have made it their mission, to make a difference for those living with autism. There may be no joy in “coming out” and sharing personal family issues; privacy is compromised and perhaps controversy follows in the wake, but there is joy in change.
The Wright’s daughter Katie echoes a cry that many parents feel. “Christian works the hardest….he is not a brat….” She remembers with tears, the times when she would take him out in public and it was embarrassing if he broke things. Her father took her out for a ride. Bob said: “No matter what, I am proud of you, proud of Christian and will be happy to be seen with him and be part of his life”. Katie cannot bear to think about “what’s going to happen when he’s an adult”; “it’s too hard to think about it…I just want to think about now”. It’s another sentiment that parents feel; one day at a time.
The Lawrence family must leave their home in North Carolina, because there are no laws mandating ABA (Applied Behavior Analysis) services for their non-verbal child. They are in a race to increase his skills. “We are not looking for him to be a Rhodes Scholar at Harvard….we want him to be able to say I love you”. They must move to Indiana for the right to get health insurance.
• There is no test for autism; no blood, urine, EEG, MRI that can pre-determine or give immediate diagnosis.
• There is no such thing as a genetic epidemic.
• There is no one size fits all plan for an individual with autism
• Early intervention is vital
• Autism is on the rise
• There will be 500,000 adults with autism in the next 10 years
• Environmental factors must be investigated
• Science must be funded
• There is an urgent need to pass meaningful insurance laws for All states
• The time to act is now
Administrators at The Riverview School in Massachusetts are appalled that when a young adult ages out of the school system, funding is simply eliminated. The “idea of stopping support cold turkey…. at a magic age, it just stops…we don’t prepare as a society for them”. Higher functioning adults fall through the cracks, and just at the time when it is vital to master services, it all stops. One mother laments, “The future is scary with no support system. …It is like looking at a deep dark well that has no bottom.”
Optimistically, parents of young adults are being creative and pro-active. John D’Eri founded Rising Tide Car Wash in Parkland Florida. His son Andrew, who has autism aged out of the system at 21 and needed to find a job. John utilized his keen entrepreneurial skills, and along with his son Tom is making history for Andrew and other young adults who just happen to have autism. They can employ such skills as following tasks, enjoying routine and structure. This can be a game changer for sustainable disability employment:We believe that Andrew and others like him have difficulty getting a job, not because they don’t have the tools to be top notch employees, but rather because most businesses are simply not structured in a way that allows them to reach their full potential.
All of the families featured in this film, bring a unique story to light. Their one common denominator is that they all exhaust Herculean efforts to help their child. Those of you watching this film will find similarities in your life, or in someone you know. The peaks and valleys are a common thread for families living with autism.
Finally, Suzanne Wright is a passionate mother and grandmother. She hurts for her child, who hurts for her child. She believes that there should be an Autism Czar. She believes that there should be an Office for Autism in the West Wing. Works for me.
There is a clip at the end of the film that shows Christian in a swimming pool. He looks peaceful on a sunny day. Suzanne’s voice brings us to our own private reality. “My hopes and dreams are something that I kind of keep to myself…..because I don’t want to have my daughter and all of us disappointed, if things don’t work out…. I also think, My God Christian, you are changing the world…you have made a difference in autism.”