For as long as anyone could remember, Eden Autism Services was looking to move to a place designed specifically for its purposes. When Aileen Kornblatt, Eden’s associate director of communications, joined the staff in 2000 there was talk of moving. When Tom McCool took over as executive director in 2005 there was still talk.
The problem was finding a place where Eden — which is part school, part adult services, and part training facility for the autistic — could expand and settle. For years it had occupied 1 Eden Way, a renovated 1950s telephone switching station with an easy-to-miss driveway entrance and workspace most charitably described as snug, on Route 1 near Harrison Street.
By 2009 a good candidate site came along. The Harmony School, a pre-school, was looking to move from 2 Merwick Road to a larger parcel across the street at 1 Merwick Road in Princeton Forrestal Village. The school’s three-acre property would be ideal for a special needs school like Eden and would allow it room to add space for its adult services.
Princeton University, the owner of all the land at Forrestal Village, agreed. And McCool, who fully intended to find a better home than a converted switching station, was interested in hearing Princeton out.
The trouble for McCool was that Princeton is notoriously unwilling to sell its land interests. The university offered a 99-year lease on the parcel, but Eden did not want to be a tenant, wherever it moved. So it told Princeton no and kept looking.
And looking. Eden’s team of explorers, led by Peter Dawson of Leigh Visual Imaging Solutions — a longtime Eden supporter — and attorney Christopher Tarr of Stevens & Lee, scouted in the neighborhood of 75 sites around Princeton, McCool says.
Meanwhile Eden stayed in talks with the university about the former Harmony space because Princeton and Eden have been good friends for about a decade. Their relationship dates to when Princeton wanted to land a physics professor from Russia, Alexander Polyakov. What was swaying Polyakov in Princeton’s direction was the fact that his son is autistic, and the physicist wanted to make sure he was in a place where the child could get care.
Polyakov ultimately came to (and still teaches at) Princeton. And, McCool says, Polyakov’s choice started a trend. Princeton has since recruited several professors with autistic children by using Eden as a bargaining chip.
The university wanted Eden at Merwick Road so much, McCool says, that Princeton gave Eden a $420,000 grant to do a feasibility study through KSS Architects, the Witherspoon Street-based firm that ultimately built Harmony School’s new facility at 1 Merwick Road and Eden’s eventual new location. The study, which lasted for months, combined with the failure to find a suitable home in the Princeton market after 75 tries, suggested that 2 Merwick Road indeed was the best place for Eden to go.
But Eden still would not sign the lease. Unwilling to lose Eden, Princeton acquiesced, selling the property to Eden for $2.5 million. Eden broke ground on its extension to the Harmony School building in September, 2010, shortly after Harmony moved out, and moved into 2 Merwick this October. It held its ribbon-cutting ceremony on December 8.
Under all the field trips and feasibility studies, and despite Eden’s relationship with Princeton University and its distaste for the old utility space it had been shackled to for years, were the logistics. Eden had a twin problem — no money and a wildly inaccurate public image — to overcome before it could move so much as a stapler.
Eden did another study into what it would take to afford a move (to 2 Merwick Road or anywhere else) and the figure it settled on was $7 million — about half the cost of its new facility overall. This figure is based on a realistic projection of what Eden could expect to raise from donors, McCool says.
Then again, if Eden could not change the perception people had of it, it would get nothing. Eden Autism Services has been around for 36 years, and for most of that time, McCool says, pretty much everyone not connected with the place thought it was a private school for children of wealthy socialites.
“The reality is 180 degrees opposite,” McCool says. “But people thought we had money.” Which meant that no one thought Eden needed any, which meant that Eden needed to amend its public image fast.
Eden set out to change minds with an education campaign — presentations in people’s homes, at public sites, at Rotary Club meetings — wherever and whenever anyone would listen. One of the many things the public learned was that Eden is not just a school. The organization also has a broad array of child and adult services, including teaching autistic adults the basics of living on their own and getting jobs. Eden, in fact, supplies U.S. 1 with several adults a week who deliver the paper to news boxes on Nassau Street and at the Princeton Junction train station.
The main point McCool wanted to drive home at the outset of Eden’s public presentation rounds was that no one was going to ask for any money. Says McCool: “It was an awareness-building thing.” Eden just wanted people to know what it did. People who already knew, in turn, hosted cocktail parties for the organization to get its message across.
The cocktail parties went viral. Almost invariably, McCool says, someone in attendance would ask him to speak at her house next. One presentation begat another and another until Eden’s calendar got full. And, despite that no one ever directly asked for money, people started writing checks to help Eden fund its move.
By the time Eden hosted its ribbon-cutting ceremony it had raised $5 million, which is, McCool says, right where Eden wanted to be. Beyond the ribbon, of course, is the new and improved Eden — a 35,000-square-foot educational and administrative space that doubles what Eden had at 1 Eden Way (including the latter’s main building and two outbuildings for the Eden Autism Foundation and Eden Outreach). Staff members now have their own offices (some with doors); there is a gym, an outdoor playground, and fields for sports. The classrooms each feature a central learning area and breakout space for therapy sessions.
The biggest change is the addition of training areas for Eden’s older clients. One of McCool’s oft-repeated phrases is “autistic kids grow up to be autistic adults,” and this philosophy is used to approach autism treatment over the long haul. “Employment is a big, big issue,” he says. To that end, there is a mini-convenience store, open to the public on weekday mornings and to Eden staff and students during the remainder of the business day. This is to help train adults to work in one of Eden’s main client businesses, WaWa Food Markets.
There also is a mock office, where students can train for jobs in the real world; an expanded kitchen (and a new cafeteria) to help train students to prepare their own meals; and a model house for students to learn what it takes to live on their own. Right now Eden is fit for 59 students, but there is room to expand to 80.
Back on Eden Way, the organization always got a lot of visitors, but McCool says most never got a tour. In its new digs Eden is giving three or four tours a day, and as people see more of what Eden has to offer, they are asking whether they can sponsor parts of the complex — such as the kitchen — in exchange for their names on them.
Offsite, Eden works with school districts in need of special services. McCool says he expects interest in working with Eden to grow as the public becomes more aware of (and more interested in) autism. Since the movie “Rain Man” first showed the world at large what autism looks like back in 1988 interest in the subject has grown, McCool says. Public awareness of autism has, in fact, increased mightily since 2005. This has been an organic growth — the more people learn about the condition, the more they want to know.
But the growth in awareness also comes from a growth in diagnoses. First identified as a unique condition in the 1940s, autism became an increasingly popular diagnosis, particularly for children, in the 1990s. In 2006 the Centers for Disease Control released a report stating that one in every 166 Americans falls somewhere on the autism spectrum, according to autism’s broader definition. Interestingly, the 2006 study also concluded that reported diagnoses of autism had been in decline since 1999.
But where once the definition of autism was fairly narrow, it now covers a spectrum from the severe to the mild. In truth, autism has very few symptoms. Difficulty communicating verbally is one (in fact, McCool says, roughly 40 percent of autistic adults do not speak, though they can). Difficulty relating to and empathizing with others is another symptom, as are hyper-focus and inflexibility in actions and tasks.
On this spectrum (since recently) is Aspberger’s syndrome. And, like much in the field of autism, the inclusion of Aspberger’s on the autism spectrum is controversial. Many researchers and psychologists argue that Aspberger’s (like childhood disintegrative disorder and pervasive developmental disorder) is not distinct enough to separate from general autism. Others argue that Asperger’s patients (who often proudly dub themselves “aspies”) do not have the same issues (i.e., they are more naturally functional among society) as people with more serious autism symptoms.
Autism is plenty controversial on its own. Say the word out loud and you will turn heads. Say you have a way to address it and you almost surely will start an argument. Eden does not have the cure for autism, because, McCool says, there isn’t one. He is confident that there one day will be, but at the moment there is only hard work in getting autistic people socialized and functional. The depth of the hard work can be imagined when you stop to think that many of the toddlers Eden first sees enter the school are not toilet trained.
The root of the turmoil in the autism world, says McCool, is planted in 1984. Prior to then, the going theory about autism was that it was caused by the way mothers treated their children in the first few years of life. It was the pet theory of child psychologist Bruno Bettelheim, a concentration camp survivor who had witnessed children and adults essentially become autistic because of how they were treated by the Nazis.
The theory died in 1984 when the brain of an autistic patient was autopsied and medical science concluded that the affliction was a genetic condition. The going theory is that autism is a genetic disorder that is triggered by environmental factors, such as a mother’s exposure to drugs, chemicals, or heavy metals (like mercury or lead) during pregnancy.
Once the new theory took hold, the definition of autism expanded. So did the number of diagnoses and the ability to read the symptoms — and, subsequently, so did the size of the controversy. Alongside this controversy is the fact that autism is not merely an American problem. A 2006 world conference on autism in South Africa showed McCool firsthand that autism is a global issue, and one slow to be accepted in some countries.
In May McCool spoke before the House Committee On Foreign Affairs about autism’s reach and mentioned that while diagnoses of autism worldwide are high, some countries are slow to attack autism as a treatable condition. Northern Ireland has just passed its first national autism bill to reform services for the condition. And in Cote d’Ivoire, McCool says, children with autism are seen as evil and are put into the jungles to die.
As knowledge grows, so does the sharing of information about autism and how to contend with it. In the absence of a cure (which itself is controversial, even among adult aspies, who often feel as if their condition is not a curse but a gift), McCool says there is a lot of work. But if a cure does come along, great. “If someone were to come up with a pill that cured autism and we were all out of a job, I’ll be happy,” he says.
McCool is the son of a longtime food buyer. He also is the husband of one. McCool’s wife, Cathy, works part-time at Whole Foods in Princeton. The couple met at West Chester State University, where in the 1970s he studied to become an English teacher near his hometown of Philadelphia.
McCool also earned his master’s in counseling at West Chester State before heading to Fairleigh Dickinson for his doctorate in education. While at FDU an old friend and former fellow teacher pointed McCool toward Devereaux, a California-based national nonprofit behavioral health organization specializing in emotional development issues.
McCool worked for Devereaux, then left to work in the Haddonfield office of Bancroft, which helps children and adults with developmental disabilities and brain injuries. He went back to Devereaux in 1985, where until 1996 he served as the executive director of Devereaux’s California operations. In 1996 he became the organization’s vice president of government relations nationally.
In 2004 McCool learned that David Holmes was retiring. Holmes is Eden’s founding director, who helped start Eden as a small school for autistic children in 1975.
For McCool the timing was good. He wanted to leave Devereaux because of the internal politics he faced there. But he wasn’t interested in Eden and he wasn’t interested in moving out of California. Neither was his wife. McCool turned down the idea of taking over at Eden, then shortly after ran into Holmes at a conference in Florida, who told McCool that he’d be an ideal replacement. His answer was “no thanks.”
But Holmes eventually convinced McCool to go for an interview at the Hyatt Regency. “I flew in for the interview and went home on a Sunday,” McCool says. “On Monday they called and told me ‘you’re an exact match.’” McCool went for a second interview to convince Eden’s board that he would not turn Eden into Devereaux, which had grown into an enormous operation across several states.
When McCool finally said yes his wife wanted to keep the house in California. He moved in with his brother in New Jersey in the spring of 2005; Cathy joined him in the fall. The couple, who have three sons, now live in Lawrenceville.
Despite his background in large-scale operations aimed at children and adults with developmental issues, McCool quickly found that he had his work cut out for him. Eden had spent 30 years under the guidance of its founding director, and the system had become entrenched. And it was losing money.
The state pays $78,000 per adult in Eden’s program (Eden has 74 adults). School districts pay the costs of children in Eden’s school program. Even so, McCool says that Eden must find $650,000 on its own, through fundraising. And with the new building adding $1 million in operating costs, there is pressing need for Eden to reach its maximum occupancy. The encouraging news for McCool is that since Eden’s ribbon cutting donors have stepped up and some said they want to increase their giving.
Things were less cheerful when McCool first arrived. McCool and the board set to cutting Eden’s costs, and the cuts started with staff. “It was a bloodbath,” he says. The justification, McCool says, is that Eden had a roughly 75 percent turnover rate anyway, so the losses in people generally were not those who had proven themselves valuable to Eden over the long haul. By the time it was over Eden had a smaller staff (the survivors got raises) and had sliced $480,000 in administrative costs out of its budget.
But like its fundraising conundrum, Eden’s money issues were only half the fight. McCool says that communication had become stagnant and in some cases non-existent. He instituted focus groups similar to the kind used to find out that the public had the wrong idea about it.
Eden started with family-oriented focus groups to find out what the families of its students and adult clients wanted and expected. The main response was that they wanted better communication with the school and staff.
The staff and board were next in line as focus group subjects, and McCool says he learned that they too wanted better communications and the ability to develop their own ideas and strengths. “The consensus was that the staff is capable and should be more involved,” he says. “The board has become a lot more sophisticated.”
The current focus is on facilities — what can Eden do with its new building? One thing has been to expand the after-school program so that working families can comfortably leave their charges in good hands. Eden also has expanded its respite care program, which allows families to drop off students so that they can have a night or long day away. McCool, though he has no autistic children of his own, is the first to admit that care for someone with autism is taxing, draining work, and families need the occasional break.
Eden also is physically expanding to Hamilton, where it has just signed a 10-year lease for a new adult services location. McCool expects to see the place open in January. The building is currently being fit for Eden at no cost to the organization, thanks to the generosity of the contractor, whom McCool does not name.
Besides being appreciated, the price break is necessary, given that Eden still has $2 million to go to meet its realistic goals and more still to finance its adult operations, McCool says. For now, it’s back to fundraising.
Yet if it’s one thing McCool has learned from being at Eden it’s the ability to look at the positive side. Though nearly all the students who come to the organization begin in frustration they eventually learn that hard work pays off. “I’m astounded by their perseverance,” McCool says. “They’re resilient. They teach me to appreciate what you can do.”
Eden Autism Services, 2 Merwick Road, Princeton 08540; 609-987-0099; fax, 609-987-0243. Thomas P. McCool, president and CEO. www.edenservices.org