by Sally Friedman

Each story  of autism is unique. Each is powerful. And no two stories are alike, despite one common denominator: autism is always a family illness, one that is vivid in the present, and stretches into the future. Everyone who loves someone with autism is swept into the story. Meet the Shestacks. Their story of the generational pull of autism is, in some ways, everyone’s story – and in some ways, theirs alone.

In the early home videos, he is a darkly beautiful baby with luminous eyes and silky hair. There are images, slightly later, of a laughing, engaged baby who giggles with delight and babbles in that sweet baby language of life’s earliest months..

Despite some troubling digestive problems that seemed to resolve themselves, Dov Shestack was as delightful and responsive a baby as any other until he was just over a year old. Today, those videos are a painful and powerful reminder of what was…but is no more.

Even 16 years later, his parents. Portia Iversen and Jonathan Shestack of Los Angeles, can vividly remember the terrifying spiral that began when they realized that this much-loved, much-wanted baby, the first in their marriage, was somehow slipping away.

For Portia, an Emmy Award-winning art director and later a screenwriter, there was the reckoning that Dov seemed to vanish into his own world for longer and longer periods of time. “At first, he seemed to be having staring spells – he’d look right past me into the distance. These spells became more and more frequent until they seemed to blend into a continuous disconnection. He was vanishing…”

Jonathan Shestack, a film producer with credits including “Air Force One,” “Disturbing Behavior,” and this year’s “Ghosts of Old Girlfriends,” had noticed the same troubling behaviors. He admittedly became obsessed with learning about child development. “I kept reading and reading, and I began to see that my son wasn’t moving on to the next step,” he remembers of that deepening sense that something just was not at all right.

Still, this enlightened, exceptionally aware and attentive couple tried to reassure one another. Portia reminded Jonathan that boys develop more slowly than girls. Jonathan tried not to focus on how Dov simply didn’t respond when he called his name.

“Finally, when Dov was 13 months old, I did really emphasize our concerns with our pediatrician,” recalls Portia. “There was that heart-stopping moment when he didn’t say ‘Oh, don’t worry,’ and instead suggested that we take him to a specialist, a child psychiatrist.”

Portia continues: “I remember that it was Memorial Day weekend, and I could only reach him by phone. As I described Dov to him, that doctor said words that we’ll never forget. ‘It sounds like autism to me – so you’ll just have to hold each other and cry as this unfolds.’”

Autism was a word Portia and Jonathan Shestack knew dimly back in 1993 when they finally met with a UCLA team of autism experts. Once that word was uttered – once it was spoken and understood – Portia and Jonathan Shestack began the long, unexpected journey into a new universe.

Jonathan particularly remembers his enormous frustration: “It seemed that there were no true ‘experts,’ that there was  no comprehensive body of information back then. The old wisdom was not to get the parents’ hopes up. But from the start, Portia and I were absolutely committed to doing more than holding one another.”

Jonathan is quick to point out that  was no Internet loaded with information back in 1993. There was, more indelibly, an image created by the 1988 film “Rain Man” about an autistic savant played by Dustin Hoffman.

“So we had this image of  Hoffman, and there was the other prevailing image of autistic kids rocking away in life’s corners,” said Dov’s father. “We were only half a generation beyond the theory that you lock these kids away in institutions.”

Portia remembers sitting and crying in Dov’s room the night the diagnosis came. “I knew he was being sucked away into another world, and it felt like I couldn’t stop it.”

But if the Shestacks were blindsided by the diagnosis, they also didn’t waste much time on self-pity. Nor did they ever try to disguise or conceal their son’s condition.  Among the first people they told were Jonathan’s parents.

Sitting recently on the terrace of their elegant apartment in Philadelphia, Marciarose and Jerome Shestack recalled their introduction to the neurological disorder that had abruptly entered their lives.

“Dov’s birth was a great joy to us, and for the first year or so of his life, it was a glorious time. He was our first grandchild, and we were like any new grandparents, absolutely smitten,” said Jerry Shestack, a prominent lawyer who has been recognized internationally as a crusader, scholar, activist and advocate for human rights.

A past president of the American Bar Association, Jerry Shestack has met with formidable foes in the courtroom, but none quite as formidable as autism in his personal life.

Marciarose Shestack, Dov’s grandmother, has an equally luminous background. The first woman in the country to anchor a TV prime-time daily newscast in a major market, Marciarose worked with the late Tom Snyder in Philadelphia, expanding from news to documentary narration and production. She hosted an NBC-TV talk show in New York, interviewed presidents, authors and artists, and was the subject of an entire  book chapter about women in media.

Yet she will be the first to admit that Dov’s autism has been one of the greatest challenges of her life, and that, like her husband, activism always has been her first line of defense.

“When this happens in a family, you grieve for your child, for his child, and for yourself, too. And at the same time you ask ‘What can I do?’”

What Marciarose and Jerry Shestack did was to stand shoulder to shoulder with Portia and Jonathan as they set out to make a difference in the world of autism.

In 1995, Portia Iversen and Jonathan Shestack launched Cure Autism Now (CAN) based on their conviction that the urgent need was for more research by the country’s best scientists into the mysterious disease that now occurs in one out of every 150 births. The mission was clear: organize parents, doctors and scientists devoted to research to prevent, treat and cure autism.

Portia began  studying immunology and molecular cell biology, while Jonathan took courses in non-profit management, fund-raising and grant writing. And Maricarose and Jerry Shestack plunged in, using their vast network of friends and colleagues to support CAN. (The organization  merged with Autism Speaks in 2007)

“Just after Jonathan and Portia started CAN, I remember  sending out invitations to a party at our home featuring our good friend, singer Julie Wilson. It was a benefit for CAN, and we wondered how the event would fare,” recalls Marciarose.

“We had no idea whether people would support something about autism, a little-known condition at that time.”

As it turned out, the Shestack’s concert and champagne/supper buffet was a huge success, and grandparent power was mobilized for the first, but surely not the last, time.

Dov Shestack is 17 now. He has a younger sister and brother, both healthy, both endearingly on Dov’s team. “They treat him like an annoying older brother these days,” says Portia. “He’s just part of the family for them.”

In the intervening years, Portia and Jonathan Shestack have tried every imaginable approach with Dov, from special diets and behavior modification to hoping to place him in a mainstream early school setting. While Dov semed to love being around other children, he could not begin to keep up with them because his  motor and language skills were profoundly lacking.

The Shestacks also tried the picture exchange system and other communication approaches with little success.

A major tiumph came when Dov Shestack met a young autistic teen from India named Tito, whose mother, Soma Mukhopadhyay, had taught her non-verbal autistic son how to communicate through a a system of pointing at letters on a letter board.

Portia had learned of Soma at a conference, and almost literally moved heaven and earth to find her and her son. “Finding Tito was a matter of life and death – or perhaps I should say it was like being told that maybe, just maybe, you could bring someone back from the dead…” she said.

When Dov was nine, Tito and Soma became part of his world, and suddenly, dramatically, this child who had been regarded as possibly retarded and totally without communication came alive. “It was magnificent, it was wonderful and it was also a bit scary,” said Jonathan Shestack, who lamented the years of assuming that his son was destined to continue as he had been.

Through Tito and Soma, Dov Shestack broke through his silence via the alphabet, and demonstrated that all along, he had been taking in the world. But never did the world know it.

The process has been anything but easy. Dov’s “speaking,” letter by paintaking letter, is exhausting, often frustrating. It is, however,  such a profound breakthrough that the entire Shestack family has been forever altered by it.

For Portia and Jonathan – for Maricarose and Jerry Shestack – Dov has been a source of pride, anxiety, hope, pleasure, and yes, occasionally despair.

“You dream of being a grandparent and sharing your world, your ideas, and what we who have lived long might even call our wisdom,” said Jerry Shestack, a celebrated speaker and writer.

“I want to share words and books with Dov – I want to give him that whole universe – and now that I know that there’s an inquiring  mind inside that body, I will keep trying.”

Marciarose Shestack cannot help but get teary when she recalls how one of Dov’s first letter-board messages to her was simply “I love you.” She recognizes in her oldest grandson not just a lively mind, but wit and humor, too. “My highest high came when I realized that there was a boy in there, that autism hadn’t completely stolen him away from us.”

Their grandparent visits across the country are wonderful, but often fraught with sadness at the enormous responsibility that their son and daughter-in-law face each and every day. “”It takes such courage to do what they do,” says Jerry Shestack. “I think of Langston Hughes’ words about a ‘dream deferred’ when I look at my son and my grandson.”

For Marciarose, the same feelings surface. Yes, there are other grandchildren – Jonathan’s sister Jennifer has given the Shestacks the gift of a grandson and granddaughter who live close by, and there is joy in seeing Dov’s younger sister and brother. “But we can never forget that there is Dov, this beautiful boy, now 17, and still held prisoner by this disease…”

Portia Iversen and Jonathan Shestack push on. Both continue to be passionate activists in the autism community, with Portia the author of the critically acclaimed “Strange Son,” the book that chronicles her journey with Dov to word recognition. Praise has come from all quarters, and today, Portia’s website (strangeson.com) is a clearinghouse for all sorts of information about two mothers and two sons from opposite corners of the world who have helped unlock some of the mysteries of autism’s profound silence.

Jonathan continues to advocate for research into the illness that has so defined their family. “I learned about activism from both my parents, and it continues to inspire mine. But in the end, Dov is our best teacher – his tenacity and sweetness are another wonderful kind of inspiration.”

Soon, there will be the breathtaking fulfilment of a “dream deferred” for the entire Shestack family.

This fall, Dov Shestack, proudly Jewish, will mark a delayed rite of passage, his Bar Mitzvah. While the ceremony that marks a boy’s transition to Jewish manhood is normally celebrated at age 13, Dov’s extraordinary circumstances have delayed the occasion.

But for the past several years, he has been diligently learning the Hebrew alphabet, and studying the rituals that define his heritage. And with the help of his sister and brother, and whatever technology is appropriate, Dov Shestack will become a Bar Mitzvah in his own way and in his own time. A Los Angeles synagogue has paved the way for other youngsters with autism to celebrate the milestone, and in October, it will be Dov’s turn.

“Nobody ever imagined that this would be possible,” said a very proud grandmother. “So while we can’t grant Dov a wish he once expressed to ‘…Make my autism stop,’  we can still allow ourselves to dream big dreams for him,” said Marciarose Shestack. “And we surely do that.”