A Master’s in Self-Help

By JANE GROSS
Published: April 20, 2008

LAURIE DUDDY thought she was on top of things when her toddlers, Tommy and Alex, were diagnosed with severe autism. She knew that early, intensive therapy was the twins’ best hope of learning simple skills, acquiring language and mastering out-of-control behavior.

So at great financial sacrifice, she hired certified therapists to work with them privately for 40 hours a week using applied behavioral analysis (A.B.A.), the therapy of choice for the growing ranks of children with autism. She moved from district to district, seeking the best educational services when they reached school age, and eventually joined a group of parents in starting a private school of their own that would offer state-of-the-art behavioral treatments.
Then, more by coincidence than design, she met Sharon Reeve, a consultant for New Jersey school districts who also supervised home programs for families. Dr. Reeve was gearing up to pitch a graduate program in A.B.A. to Caldwell College, and she welcomed an invitation from Ms. Duddy to evaluate her two boys’ therapy.
“When she left, I was devastated,” Ms. Duddy said. The twins were not being taught play or social skills, Dr. Reeve had told her; nor was “the science being practiced the way it should be practiced.”
Ms. Duddy was recounting her frustration from the student lounge at Caldwell College, where she is working toward an advanced degree in A.B.A. — to “steer the ship better” for her children, now 8.
Of the 100 students in Dr. Reeve’s three-year-old program, 17 are parents of children with autism or related disorders. Like Ms. Duddy, they have decided that completing a master’s degree — and investing some $25,500 in tuition — is worth it to help their children. Along the way, most have been inspired to begin new careers. Ms. Duddy hopes to train therapists once her own education is complete.
In most states, a generic special education degree is sufficient to treat children with autism and to use the particular techniques of A.B.A., the only therapy for the disorder with proven results in peer-reviewed research. But many colleges and universities now offer specialized degrees in A.B.A. Graduate programs are offered at Northeastern University in Boston, Florida State University in Tallahassee, the University of North Carolina at Wilmington, the University of Maryland in Baltimore County and California State University in Los Angeles, to name a few. Administrators at several of the programs say they, too, have parents of autistic children among their students.
Caldwell’s graduate program is the only one of its kind in New Jersey, a state known for pioneering autism education and advocacy. New Jersey is home to the Princeton Child Development Institute and its many offspring, including a host of small private schools founded by parents committed to A.B.A. techniques. The state is thus a magnet for families from out of state looking for the best services for their children. Because of this migration, New Jersey has the highest incidence of autism in the United States: 1 in 94 children versus 1 in 150 nationwide, according to federal studies. The supply of behavioral therapists has not kept up with demand, leading to waiting lists at private schools, an insufficient number of public school programs and desperate families outbidding one another for private instructors.
The Caldwell parents, all but one of them mothers, have firsthand experience advocating for services, battling recalcitrant school districts, monitoring what goes on at school and managing home programs to supplement classroom instruction.
Many have seen their marriages crumble under the stress; moved multiple times to find a district that can educate their child or pay for an out-of-district placement; and run up staggering debts paying for private school, in-home therapists and lawyers versed in the rights of disabled children to a free and appropriate education.
In the classrooms at Caldwell, students study the principles of behavioral learning: to break tasks into their component parts, to reinforce success with tangible rewards like pretzels and intangible ones like praise, to meticulously chart progress, to make course corrections that foster what works and to generalize skills mastered in a controlled classroom for the messier circumstances of everyday life.
They study language and social deficits — the hallmarks of autism spectrum disorder — as well as challenging behaviors common to autistic children, like hand flapping, tantrums or self-injury. They also do the equivalent of student teaching in New Jersey’s private schools and in dedicated public-school programs for autistic children.
At Garden Academy in West Orange, 8 of 15 therapists and aides are Caldwell students. Among them is Lisa Rader, a 29-year-old single mother who left the Air Force and took a high-paying job with a defense contractor to pay the legal bills incurred in getting her autistic 11-year-old son the services he needed.
Now, with the legal battles resolved, she is making another career change. Ms. Rader works at Garden Academy during the week, runs home programs for private clients over the weekend, goes to school at night and does her homework when her son is sleeping. It is an exhausting enterprise.
As her son gets older, she hopes to shift her personal and professional focus to adolescents and adults with autism.
The Garden Academy, which opened in 2006, has 17 students 3 to 8 years old. They also have a waiting list of 80 — but not enough therapists to expand, says David Sidener, the school’s director. Mr. Sidener’s goal is 24 students. “It’s a seller’s market for A.B.A. therapists,” he says.
Sixteen other Caldwell students, including Ms. Duddy, work in the Bernards Township public school district.
Carole Deitchman, a former advertising art director and the mother of a 20-year-old with Asperger’s syndrome, teaches social skills to children like her son, who have boundless academic ability but no understanding of interpersonal niceties.
One recent afternoon, she instructed a 5-year-old and a 6-year-old, both in mainstream classrooms for the first time, on the rudiments of conversation.
Look at the other person when you speak, Ms. Deitchman urged. Then ask a question, wait for an answer, ask another question and say something at the end.
The boys’ chitchat, while stiff and halting, fit the formula:
“Hi, how are you?”
“Fine, how are you?”
“What did you do today?”
“I played a game.”
“What game?”
“It’s called Candy Land.”
“I don’t have Candy Land yet.”
Perfect. Ms. Deitchman beamed and rewarded the boys with high fives and green smiley-face stickers.
Most of the parents studying at Caldwell have areas of professional interest related to their own particular tribulations and fears. Martine Torriero, who has a 15-year-old son, hopes to run recreational and cultural programs for autistic teenagers. Delia O’Mahony, whose son is now 22, is interested in adult services, since children like hers “fall off a cliff” when they are past school age. Diana Kelly, who used all her skills as a lawyer to get her two sons properly diagnosed and treated — each has a different variation of autism spectrum disorder — does private consulting for families and schools as she works toward her master’s degree. She hopes Caldwell will add a doctoral program, too.
Once a liberal-arts school for “Catholic women of modest means,” Caldwell is now a coeducational institution with 1,032 undergraduates and 625 graduate students, mostly from New Jersey. The college focuses on career preparation, especially in medical and educational specialties.
Sharon Reeve, an associate professor of education, started the graduate program with her husband, Kenneth, who is now chairman of the psychology department. They met as doctoral candidates at Queens College, where both were doing basic research in behavioral analysis; she was studying pigeons in a laboratory. One day, a colleague dragged her to a school for autistic children. She knew at once, she says, that the classroom application of applied behavioral analysis was far more compelling than the research she was doing with her pigeons.
As final exams approached last semester, a class taught by Kenneth Reeve reviewed how to evaluate treatments based on data, not anecdote. He frequently turned to Ms. Kelly to share her personal experiences.
By her own account, Ms. Kelly has tried just about everything, from A.B.A., which many families find harsh and robotic, to kinder and gentler programs with little data to support effectiveness, to special diets and detoxification. Each consumes time and money, Ms. Kelly said, telling her fellow students, as she does the parents she works with, that trying a little bit of everything is tempting but not necessarily wise.
“It’s not what looks good, it’s what works,” Ms. Kelly said. “And every hour spent doing X is time lost for Y.”
She also laments the imperfect choices available when moving from a home program, usually reserved for toddlers, to a school setting as children get older. Over the years, Ms. Kelly said, she tried a public school classroom for the handicapped, an integrated private school, a mainstream parochial school with a “shadow” for her sons and a school for children with learning disabilities.
“Could it be better?” she asked. “Absolutely. Could it be worse? Absolutely. I did a lot of things right and many wrong. I know what was missing for us. And what I’d like to do for other people is help plug the holes.”
Jane Gross is a national reporter for The Times