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Blessed By Autism

19 November 2011

As I write this, Thanksgiving is just days away, and the holiday season begins. Despite lots of stress and some big challenges over the past months, I anticipate these occasions with a renewed sense of awe.

When obstacles seem to be around every corner of our lives, it's often hard to feel thankful. But I'm reminded that it's the obstacles, in fact, that allow us to be thankful. If not for life's challenges, what would we have to be thankful for?

That brings me to a fundamental principle of Awe in Autism's philosophy: People with disabilities are a unique gift to the human race. By the very fact of their special needs, people who depend on our help and care enable us to understand how much more there is to life than the things most neurotypicals relish: prestige, wealth, time for vacations and entertainment ... the marks of "success" in our society. It's not that there's anything wrong with having these things. It's that they often get in the way of what's most important.

In my relationships with families caring for loved ones with disabilities, I have found two things to be true: The first is that they experience greater hardships than others; the second is that they experience deeper joy. The definition of "success" for these families is very different from the norm. Success comes in baby steps, and small accomplishments are a cause for celebration – a cause for thanksgiving.

People often ask me why I cofounded an autism organization when I don't have a child on the spectrum. A partial answer is that I was profoundly impacted by the experience of my partner, Kim, and by her son Dylan, who has autism. Kim and Dylan certainly were the inspiration for my involvement in Awe in Autism. When we began, though, I had no idea of what I would learn as I developed relationships with people on the spectrum and with those who love them. I only knew that I wanted to help in some small way. Over the past year and a half, I've come to realize that my friends with disabilities and the families who support them have given me much more than I have given them. They – and when I say "they," I mean many of you – have given me deeper appreciation for even the smallest blessings in life.

I don't mean the blessings of not having autism, or of not having to care for someone with autism; I mean the blessings that come with autism, or with any disability. I am blessed by the insight, the courage, the absence of pretense, the determination, the humor and, of course, the creativity that autism inspires. Yes, there are many on the autism spectrum whose challenges are severe – who may never drive a car, hold a job, create a piece of art. Their value is no less. They teach us patience, perseverance, understanding and acceptance; they teach us to love unconditionally. I believe the world is a better place, and we are better human beings, because of the presence of individuals with autism in our lives. And I am thankful for them.

Kim and I wish each of you a wonderful Thanksgiving full of blessings.

In AWE, Deborah

Light Through a Prism: Reflections on the Spectrum

The push for autism awareness has helped a lot. More programs, more services and less explaining.
 

But for all the awareness, I realized recently that even my own view of autism has always been, well, what it can only be: a limited perspective from the small perch of my life. I knew about the "spectrum" of autism, but I became aware that I really had only a vague idea of what that spectrum encompasses. That changed one day last summer when I picked my son up at a summer camp for children with autism and their typically developing siblings and peers. That day, I saw the full spectrum right before my eyes.
 

Children of every ability --non-verbal and hyper-verbal, super smart and cognitively challenged, "elopers" and clingers. Helpers and those who need help. This is autism.
 

It drove home right then the great challenge for teachers, for families, and for the development of true understanding by those not directly affected. How can one child with autism who's intellectually gifted and can carry on a conversation, however stilted, have the same disorder as the child who cannot say a word and needs help getting dressed in the morning? Reconciling the two is a tall order for anyone, even those whose families are already living with autism.
 

Understanding the spectrum is one of the challenges of autism. My story is not the same as that of the mother of the boy who sits next to my son in school. They both have autism. It looks completely different on one than it does on the other.
 

Deborah and I believe that there is much to be celebrated about the unique perspectives of people with autism, wherever they may land on the so-called spectrum. We recognize that there are many who may never paint or make music, but they inspire us nonetheless -- just by being. They open our eyes to alternate ways of looking at the world ... they teach us to listen, to work on our understanding, to be patient and loving. We are better for their existence among us.
 

No doubt we cannot force compassion and understanding on this or any issue. But by celebrating the intrinsic value of each person with autism we have the potential to bring about a change in attitude. Perhaps your child, like mine, shows no indication of ever becoming a Rembrandt or Hemingway. Yet unquestionably, your child – like mine – is a treasure.
 

I, for one, won't give up hope that one day soon the world will embrace these precious gifts.

In Awe, Kim

The Awe in Autism: A Spectrum of Creativity

"Mamita and Rabbit" by artist Christian Early

The program that followed included poets and musicians on the spectrum, as well as film, storytelling and other cool stuff. The emails we've received give a better description than anything I could say myself, so I'll share a few excerpts with you:

• "What a spectacular event ...The exhibit was exceptional, the crowd was a lot of fun, and the multi-faceted program you put on was fabulous..." 

• "The entire event was eye opening, inspiring, informative and life-giving. My sister says she is thinking about those on the spectrum and her own life in a whole new way."

• "So rarely does anyone portray the talents of artists with autism correctly in its full splendor!" 

•  "I really have almost too many good things to say about the event as a whole ..."

• "It was a great forum for people and artists on the spectrum to meet and appreciate each other's work -- and for others who were on the outskirts to understand more about the experience of having autism."

•  "You guys have tapped into a well deep and pure. Obviously there is a hunger for what you're doing." 
 

The crowd begins to gather in the gallery.

Singer songwriter Jon Fried

2010 "Got Talent" winner Laurie Maitland

Getting a closer look at the art of Vito Bonanno

(We'll post our video of The Awe in Autism: A Spectrum of Creativity, on our site very soon; meanwhile visit us on Facebook and check it out what one of our guests created!)

'You Are the Stars'

22 January 2011

When I heard the news of Sargent Shriver's death on January 18, just two days before the 50th anniversary of John F. Kennedy's inauguration, I was struck by the impact a single individual can have on many people — and how actions, more than words, define a life. Shriver married into the Kennedy family, known for its legacy of public service, and did not disappoint with his own record of helping the underprivileged. It was he who was charged with the daunting task of designing the foundation for the Peace Corps for JFK, his brother-in-law. Fifty years later, it remains a model, copied countless times.

With the news of his death, I couldn't help but think about Sargent Shriver's wife, Eunice Kennedy Shriver, who died in August 2009. I wrote about her legacy in a column for The Southampton Press shortly after her death, noting that it is her founding of the Special Olympics some 40 years ago that makes her a hero in my heart:

"It's not just her legacy in the form of a wonderful organization that makes it so, it is the compassion behind it, and how it was the start of a cultural shift in this county regarding how we, as a nation, viewed individuals with intellectual disabilities. News of her death came to me by way of a mass e-mail sent by her son, Anthony Kennedy Shriver, founder of Best Buddies, another organization devoted to individuals with developmental disabilities.

"When I clicked on the link to a site honoring his mother, the first thing I heard was the deep voice of Mrs. Shriver, clearly a Kennedy, and the words she spoke at the 1987 Special Olympics World Games, sending chills down my spine for the hope it inspired then and now: 'You are the stars, and the world is watching you. By your presence, you send a message to every village, every city, every nation. A message of hope. A message of victory.' Indeed, it is she who gave so many hope and a chance at victory, a chance to be valued.

"Mrs. Shriver openly talked about people with intellectual disabilities and was not afraid to be around them. She was widely photographed shoulder-to-shoulder with children, teenagers and adults with obvious disabilities. There is something about a woman born into wealth and privilege who takes her mission so seriously, not simply by urging others to take it on, but by example. By being willing to swim, run, play, and even hug a child with a disability. It gave her message more weight.

My son Dylan at the Special Olympics

In AWE,

Kim