Family Searches for Key to Unlock Son’s Autism

Alex wasn’t like his brother, Willy. When Willy was 2, he was talking, and talking a lot; when Alex was 2, he . . . wasn’t.

And Alex would watch the same videos, over and over. “It’s hard to explain, but he sort of disappeared when he was watching videos,” says his mother, Elaine Masket. “He was just kind of overly focused, and he lost awareness of his surroundings.”

When they moved to a new house, the last thing they moved was the television. While the movers carried boxes and furniture around him, 11-month-old Alex watched TV.

“You could have sworn that he didn’t notice we were moving,” Elaine says.

So the Maskets went to see a neurologist, who delivered a rather abrupt verdict: “He’s autistic. I knew it the minute I walked in the room.”

Twelve years later, Elaine chuckles bitterly. At the time, it seemed like a death sentence, harsh and without mercy. But so much has happened since then.

They have built a life around their autistic son. He has grown, and so have they.

And they have decided to help find a cure for autism, launching a homespun effort to raise money and awareness--an effort that has been far more successful than they had ever dared to hope.

Elaine remembers a moment 10 years ago, when 6-year-old Willy asked why autism had to come to their family. Well, she said, in some ways theirs was a perfect family for someone like Alex--they had plenty of love and money and education, so they were equipped to deal with the challenge. Still, she said, it was a big problem.

“I don’t think it’s a big problem,” Willy told her. “It’s a lot of little problems, and I think that’s good, because little problems have little solutions.”

She grins. “He’s just always been more mature than I am. I hate it.”

Alex, with huge brown eyes and a charming smile, is a “sparkly kid,” in his mother’s words. He is an artist, of sorts--he uses Legos or vinyl stickers to make extraordinarily intricate patterns that cover the floor and walls of his bedroom. But his vocabulary consists of fewer than 50 words, and his voice has the timbre of the mentally handicapped.

As an undergraduate psychology major--before she went on to Columbia Law School, where she met Steve Masket--Elaine worked at a school for autistic kids. So she knew a little about this peculiar and heartbreaking condition.

Autism is generally diagnosed before age 3. Estimates of the number of autistic children have been as high as 1 in 500, and there are indications that the incidence is increasing.

Autistic children seem unresponsive; often, they seem to be repelled by any physical contact. Words come hard.

Their senses sometimes seem overstimulated (Alex found the pulsing of fluorescent fixtures unbearable, and a busy supermarket would make him scream with pain) and sometimes understimulated (he loves amusement-park rides and sitting under crashing waves at the beach, and Steve would sometimes calm him during a tantrum by picking him up and twirling him around).

Although there are treatments for autism, there is no cure. Steve and Elaine knew that, but when they put Alex in a special school, they declined an offer to meet the older kids.

“We said, ‘No, he’s going to be in and out of here in a year,’ ” Elaine says.

Was it denial? Optimism?

“It was a bit of both,” Steve says.

But the Maskets are savvy people--Steve is the general counsel for Maidenform Inc., and Elaine retired from law to become a homemaker when Willy was born. They quickly ensured that Alex got the schooling and therapies he needed.

Through the years, there have been men and women who have helped. Marnell Jester, a former classroom aide and now a special-education teacher, comes regularly and takes Alex on outings to Newark Airport to ride the monorail or to Greenwich Village to eat in a restaurant.

“He has a better life than we do,” Elaine says.

But thanks to Jester and others, the Maskets had a life. They might change vacation plans to accommodate Alex, but they never missed one of Willy’s bowling matches or a school play.

When Willy was little, they took care not to make him the family’s “third adult,” another caretaker for Alex. “I did not want to build up any resentments. I didn’t want him to feel burdened,” Elaine says.

And Willy, now a 16-year-old high school junior, says he never did. Although “it’s not like we have heart-to-hearts,” Willy says, “We really care about each other, about how the other is doing, protecting each other.”

He and his 14-year-old brother have brotherly battles over who wields the remote. And before Willy moved into his own room a couple of years ago, the Legos that covered the floor were problematic.

“Sometimes, I was able to put my toes in just the right place--two steps, right in bed.” Other times, he says, “it was an adventure--especially in the morning when you’d wake up, you’re groggy, you get out of the room and get all the Legos out of your feet.”

As he’s gotten older, his parents have begun to involve him in his brother’s care. They are just 48 years old, but they know that eventually, Alex will be Willy’s responsibility.

Willy volunteers at a YMCA program for autistic kids. When Steve and Elaine went to Alex’s school for a conference, they brought Willy along.

“It’s scary to think about having two aging parents and a brother like this. He better have very broad shoulders, this kid,” Elaine says.

Elaine had been feeling guilty because a friend had offered a million-dollar challenge grant to Cure Autism Now, a Los Angeles-based organization that promotes research. The Maskets didn’t have that kind of money, but they wanted to do something.

Perhaps a dinner-dance and auction? No--too scary, too much pressure from adults spending big money and bringing big expectations.

Then it hit her. Willy’s band!

Willy started playing the guitar in eighth grade, and it is his great love. “The old music is where it’s at,” he says. Beatles and Jimi Hendrix posters decorate his basement bedroom. When he was in ninth grade, he joined Passed History, a band that mostly plays classic covers.

Elaine’s idea: Willy would run a benefit concert for autism, and Passed History would be the featured performers. Ticket prices would be kept low--$10 or $15--to encourage Willy’s high school peers to attend and learn about autism.

The real money would come from donations. Willy sent out 500 letters to just about everyone the Maskets know, asking them to serve as sponsors.

“I am a junior in Westfield High School and I have a 14-year-old brother who is a really cool kid. But he has a big problem: He has autism,” the letter began. “As of now, my brother can only speak a few words, and it’s clear that unless major medical advances are made, he will never live an independent life. I want something better for him.”

The goal, he wrote, was to raise more than $10,000.

Willy took on a co-chairman--his best friend and bandmate, Josh Lerner. Together, they spent Saturday afternoons seeking contributions from merchants in this New York City suburb. Josh’s mother, Pam, ran the food operation for the benefit, which was to be held at Temple Emanu-El, the Maskets’ synagogue. The temple’s youth group volunteered to sell refreshments.

For Passed History, this was a major gig. Until now, they had performed at a high school coffeehouse and at graduation and Sweet 16 parties. So they practiced for hours at drummer Charlie Hely’s house.

Willy’s parents invited autistic kids and their caregivers to attend the benefit. They kept tabs on the donations as they arrived, produced programs, arranged for decorations (kids at Alex’s school made the centerpieces).

Dec. 1 proved an eclectic evening. A crowd of 350 people heard Westfield sophomore Jason Mesches play jazz piano. (Later, he did his Elvis impression, prompted by his classmates, who donated $100.)

The audience heard the gospel sounds of the Inspirational Choir of Newark’s New Hope Baptist Church. Alex’s caregiver, Marnell Jester, is a choir member and wanted to take part in the benefit.

Finally, there was Passed History. Four guitars and a set of drums wailed through Chuck Berry’s “Roll Over Beethoven,” the Rolling Stones’ “Get Off My Cloud,” the Beatles’ “I’ve Got a Feeling” and other tunes. The kids were up and dancing.

The inspiration for all of this, Alex Masket, made a brief appearance. He went in and out of the room, pilfering black-and-white cookies before they could be sold.

For the Maskets, it was a joyous evening amid days of apprehension.

With puberty’s arrival, Alex has shown signs of anxiety. At times, he has walked with an exaggerated gait, stepping forward and backward again and again before he leaves a room. He used to say “Cheerios” when he wanted a special weekend breakfast; now he just says “Cheer,” and Elaine worries that he is losing his hard-won vocabulary.

She knows that Alex’s future depends on a cure for autism, and that this benefit was a step forward. The Maskets did not raise their publicly stated goal: $10,000. They did not raise the goal they had secretly harbored: $30,000.

They raised $57,000.

There is strong evidence that the origins of autism are genetic. Cure Autism Now sponsors genetic testing, so that families with autistic children can be profiled, and cell lines can be established for continuing research.

Profiling each family costs about $5,000; the money raised by the Maskets will enter 11 families in the gene bank. Elaine is certain that these families are going to be the ones who solve the puzzle and free her “sparkly kid” from the shackles of autism.

“Because why not?” she asks. And she cannot think of a single reason.

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Autism Society of America:

www.autism-society.org/

Cure Autism Now:

www.canfoundation.org