I love autism

Elaine Hall

I was recently invited to be part of a committee responsible for planning an event to raise awareness, advocacy and funds for autism research and treatment. I was asked to help with the entertainment.

Last Tuesday, after a series of email virtual "meetings," we all gathered, some in person, some on phone lines. I was soon to learn that among the committee members were T.V. and Film Executives, journalists, publicists, a former Broadway producer, film producer, writers, each and all dedicated to optimizing outreach resources and channels of communication in order to help raise the profile of the current short and long term needs of families living with autism.

We began to introduce ourselves to one another as we went round the table. The director started, then the organizer of the meeting, and then since I was seated closest to the organizer, I was the third person to speak. "I'm Elaine Hall, I am the founder of The Miracle Project, a theater and film arts program for children with autism. Additionally, I lead a Bar and Bat Mitzvah program for children on the spectrum at Vista Del Mar Child and Family Services in Los Angeles, CA. Most importantly, I am Mom to 14 year old son with autism. I love Autism. I suppose I am an autism geek!" Responded to by chuckles.

As we continued our introductions, I was struck by how many of us, including these high-powered executives, have been impacted by autism. "I have a 17 year daughter with autism." "I have a 14 year old son." "I have an adult son." An 11 year old daughter. A Niece, a nephew, a neighbor, a friend, cousin, with...
Autism does not discriminate.

We had one more introduction before concluding and moving onto the nitty-gritty of the actual event planning. Our final attendee was on the phone, so I could not see her expression. "Hi, she began, "I am "Kate" (name changed) and I have a child on the spectrum. Contrary to what that one person said about loving autism, I hate autism."

At that moment her words reverberated up and down my spine like a shot of adrenalin. Had my initial comments offended this woman? I thought I was just trying to be cute. Had I offended this entire committee? What was I saying? How can I love autism? Shouldn't this autism, like cancer, like diabetes, like war be obliterated. Be destroyed from the planet? Shouldn't all children be able to socialize, go to public schools -- for G-d's sake, to speak?

How dare I say I love autism. Who do I think I am to be so flippant? So Shallow. How dare I even think it. Especially in this room full of such wonderful, selfless committed people. Those who have chosen to make lemonade out of lemons and take their experience to be of service to others.

I want to correct, to comment, to qualify. Say something. 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.

"Is it possible to both love and hate at the same time?" I am obsessed for the rest of the day. I was once alarmed at a friend when he commented that when he is angry at his wife he does not feel any love for her. I couldn't believe this statement. Even at my angriest at my husband, I still feel intense love for him. I spoke with a therapist friend about this and she commented that most people when they are angry do not feel love. Their hearts are closed. She said that what this man was experiencing was perfectly normal. And that it is, me, who, had the atypical reaction. "It is uncommon that you feel love in your heart even when you are angry," she said. Nothing to be ashamed of, but none-the-less a tad out of the ordinary. Okay. I'm abnormal about something. I hear that every day!

Later that evening, I spoke with my husband, Neal's step-dad, Jeff, who also hates autism. And 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 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; Bob and Suzanne Wright for holding a vision that unites so many. The Fluties, the Peetes, the Gotts, 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. (Pardon me here if I fail to mention someone's name as I am sure I will offend someone. It's become something I'm quite good at!) Keri Bowers, Karen Simmons, Dr. Ricki Robinson -- who speak at and hold conferences. Dr. Stephen Shore and Temple Grandin who are changing the world by speaking out about autism. All people personally impacted by autism who chose to spend their lives using their experience to be of service to others. And those non impacted like Barry Prizant and Doctor Stanley Greenspan, of blessed memory, Dana Kae Bonahoom, Serena Weider who have dedicated their lives to helping those with autism.

Mostly I Iove the children who chose 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 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 once heard my Rabbi say when asked by the family member of someone dying, "Where is G-d while my sister lies suffering?" "G-d," the Rabbi sweetly responded, "is in the love that you are giving your sister as you hold her hand."

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.

Though we may find the Cause for autism in my lifetime and the Cure in my son's lifetime, 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.

Originally published in Huffington Post

To share your personal stories of how autism has affected your life, your family's struggles and triumphs, email them to info@autismsupportnetwork.com to have them shared here

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