I was recently invited to help plan an event to raise awareness, advocacy and funds for autism research and treatment. On the committee were members from the entertainment industry: T.V. and Film Executives, journalists, publicists, a former Broadway producer, film producers, writers, etc.
After a series of virtual email "meetings," we finally gathered, some in person, some on phone lines.
\When it was my turn to introduce myself I casually said "Hi, I'm Elaine Hall, the founder of The Miracle Project, a theater and film arts program for children with autism. I also lead a Bar and Bat Mitzvah program for children on the spectrum at Vista Del Mar in Los Angeles, CA. Most importantly, I am Mom to a teenage son with autism. I love Autism. I suppose I am an autism geek!" The group chuckled and the introductions continued.
Our final attendee was on speaker phone. "Hi, she began, "I am Kate, and I have a child on the spectrum. Contrary to what that one person said about loving autism, I hate autism."
Ouch! Her words reverberated up and down my spine like a shot of adrenalin. Obviously I had offended this woman. How dare I say I love autism. I want to correct, to comment, to qualify. Say something. Had I offended others? I want to ask but it was time to move on to the task at hand. So be still my heart -- I hope that I then offered some worthwhile information to help with the fundraising efforts.
Later that evening, I spoke with my husband, Neal's step-dad, Jeff about this. I had to qualify what it is that I love. It's not that I love the disorder, the disorganizing, the disruption of Autism. It is not that I love the negative looks, the lack of funding, the dissolution of families that autism brings.
It is that I love the hearts and souls of our children and adults with autism, who struggle every day to be part of this world in spite of their disability. I love the families and friends, the mothers and fathers, sisters and brothers whose lives are drastically changed by being thrust into a world so different than they have every anticipated. I love their tenacity, their sense of purpose to do whatever it takes to help their children. I love people like Portia Iverson and Jon Shestack who put their own lives on hold to develop Cure Autism Now, Lisa Ackerman who created TACA; I love the people at Autism Society of America. I admire Bob and Suzanne Wright for holding a vision of Autism Speaks that unites so many. The Fluties, the Peetes, the Gotts, the Martins and other celebrities who have "outed" themselves to help so many of other people.
I love Linda Fiddle who chose to honor who son's death by starting a foundation that supports other people's causes. Keri Bowers, Karen Simmons, Dr. Ricki Robinson -- who speak at and hold conferences. Stephen Shore and Temple Grandin who are changing the world by speaking out about their autism and All those personally impacted by autism who choose to spend their lives using their experience to be of service to others. And those non impacted like Dr. Barry Prizant, Dana Kae Bonahoom, Serena Weider and my mentor, Doctor Stanley Greenspan, of blessed memory, who dedicated their lives to helping those with autism.
Mostly I Iove the children who choose every day to wake up, get out of bed, deal with the sensory overload, the dirty looks, the physical, emotional, social challenges just to walk down the street. They are my heroes. They are so worthy of being loved. Who because of their autism, or is it in spite of their autism, or in deference to their autism -- they are capable of such great love. Such warmth. Such compassion and sensitivity. Far beyond what people say they can - because it is often so difficult for them to express it, that when they do express their love -- it is so much more meaningful.
In a time where we by necessity need to "scale down." I see our kids with autism as our teachers, sent to show us how to get by needing so little and concurrently experiencing so much. For my son, a trip to Magic Mountain and a ride on X2 was more than enough for his Hanukah gift. For others, being with family and one favorite toy hits the mark. There is no need for lots of "stuff." Who wants more things to have to process?
A smile, a friend, someone to listen to them. These are the things I hear from kids with autism when asked what they want. Perhaps our kids and adults are not "mistakes." Mutants. But instead, They are perfect. Perhaps they are our canaries. Like the canary who is impacted by the gas leak first. The highly sensitive ones. Perhaps the world is too fast, too loud, too much. People with autism know this truth. Others have forgotten the essentials. What is truly important in life. Compassion, Understanding. Connection. I love the perspective that autism teaches me.
Okay. So is it possible to feel both anger at autism and love at the same time? To hold these seemingly opposing views side by side? I think so.
Perhaps just for today we can look at Autism as our Teacher. And yes, with Love. And as I continue to gather with this most dedicated committee, I am honored to be part of, I hope we continue to raise the necessary funds to help connect our kids to the world, and connect us to the highest parts of ourselves. To Love... Unconditional Love.
You know how they say that it takes a village to raise a child? I really think it takes a child with special needs to raise the consciousness of a village.
Elaine Hall is the Founder/Director of the Miracle Project and the Vista Inspire Program.