I Love Autism

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!) Stephen Shore, Keri Bowers, Karen Simmons, Dr. Ricki Robinson -- who speak at and hold conferences. 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, 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 I pray that we 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.

Elaine Hall is the Founder/Director of the Miracle Project and the Vista Inspire Program.

Comments

[jrwestphal]

HuffPost's Pick

Elaine,

Thank you for your beautiful blog. I've been working for years to preach the beauty, love and joy of autism and you said it here so eloquently. My wonderful son is 16 today, and because of his autism, I have learned patience, when I thought there wasn't any left in me; I've learned kindness, when I didn't think it was possible be understand anything; and I've learned that unconditional love is the only way to build truly nutritional relationships with anyone, but especially with these beautiful kids. Hate, anger, sadness, self pity - I've felt all these emotions walking along this path of autism. I was fortunate, I met people who loved me anyway. Along with my son, their support helped me accept the beauty in us all. Because of my experience, I started a web site devoted to helping parents find treatments for their kids; because I know that information breeds empowerment, and when we feel empowered, we can do anything.

Today, my son is fully engaged, speaks about his emotions, wants and fears, and is quickly taking off in the world of fashion design. He's my hero.

Again, thank you.

Jenifer Westphal
co-founder; Kyle's Treehouse
www.kylestreehouse.org

[cathaycat]

AND...i have a 25 year old daughter with type one diabetes and celiac and my son has celiac and dyslexia..­.i get migraines.­..life is not a cinch.....­but each of these DisOrders has to be fully included and embraced seeing as the people who have these things Have To Live with them and as them and all that......­and Shame is not very helpful...­.except for coming out from under and behind it...
the work that Elaine does with the Miracle Project is a beautiful thing....a­nd there is no doubt that
autism is not easy for the people who have it or for the people trying to raise them or relate to them....bu­t we can learn a lot from different people and ways and we can all help where we feel called or pulled. blessings.

[cathaycat]

i am 55. i believe i am On the Spectrum in some way. it is a lot to hide and protect and pretend sometimes. in the movie, Autism:the Musical, i saw Mothers and Children who were not hiding....­......and i went to the training last summer and met Elaine and Diane and many more people and i saw and was allowed To Be in a world that was Not Pretend and Not Hiding....­.the mothers are transparent about themselves and their lives...th­eir kids are transparent and real as well. Inclusion, acceptance and love abound. People are Welcomed. it is beautiful. it is a lot for me to go to LA from SF to volunteer for this, but i am motivated to Pilgrimage to there again because it is so nice to be Loved...i love autism too....oxo­xoxox

[CoachE]

Thank you all for your posts. Yes, I too, believe that "normal" is overrated. When I finally gave up seeking normal, and enjoying my "abbynormal" life, my world became so much more vivid and beautiful. Yes, autism did, indeed, give me that gift.

[Arithrianos]

It is very possible to feel love and anger at the same time, it is the painful things that lead to growth. It could be that autism was the only way to get you to open your heart to all things, not just the "lovely" things, and isn't the ability to love even when angry worth going through anything?

[gloriousbeing]

I am a mother of a son on the spectrum. I do not believe my son needs a "cure". I believe my son is normal, in spite of what all the other "experts" say about him. Is he "different"? Yes, but we all are. Is he "challenging"? Yes, but so are my other two children and they don't have a "diagnosis". He is creative, interesting, loving, caring, sensitive to others and the world. It is unfortunate that this world has been handed a bill of goods that "normal" is judged within such narrow parameters, when the truth is, we are all gloriously unique and should be celebrated as so. How amazing would our world be if there wasn't a profound need to hold to the narrowly held belief of what is "normal"? Look to yourselves and ask why difference is so threatening to you. Why you feel the need to defend and/or rationalize your belief in such a narrow definition of "normal".

[TMCStrom]

I don't think the autism debate really comes down to "different" and "normal". All of the items you list "creative, interesting, loving, caring, sensitive to others and the world" have everything to do with who your son is and nothing whatsoever to do with what autism is.

Autism has to do with disrupted communication and social skills. Autism is sensory issues. Autism is restricted non-functional interests.

Autism is not a difference, it is a disorder.

So ask yourself, why do you feel the need to romanticize a disorder?

You should want to celebrate who your son is and and take pride in what he can do, just don't turn that into calling something as devastating as autism can be just a "difference".

[CamJam]

Thank you! well said.

[maggiemom]

I have a child- who I love
I do not have an autistic child.
I have a child with autism whom I love.
The difference is huge.
I love him- I hate autism and if I could I would kill it even if it killed me to do it..
It is not a fun way of making friends or a reason to have a party.
Autism is making everthing hard for my child- NOT MAKING MY CHILD WHO HE IS!

[iowamomof2]

Thank you for writing this. It seems that everything I read about autism is negative and I always come away wondering why I'm seemingly the only one who loves that my son has autism. I can't separate the two, he is a child with autism. He wouldn't be the same child if he didn't have autism. Wishing he didn't have autism would be wishing he wasn't who he is. I love the autism, it is part of what makes him who he is. I don't want nor would I ever want a "cure" for him. His struggles make us all appreciate the sweetness of succes much more acutely than if he didn't have autism. So much about our lives have been improved because of the fact that he has autism, I could never hate it because I can't separate the child from the autism. He is a child with autism and I love him more than anything in the world.