Autism New Jersey: The Third Decade 1985-1995

As Autism New-Jersey approaches its 60th anniversary, we look back on the history of our organization — and of the progress of the autism community, both statewide and national — through a series of six vignettes, published monthly. Read about our first and second decades.

It’s 1988, and for the first time, autism was on the big screen.

For decades, parent groups like Autism New Jersey’s predecessor, COSAC, had been working to gain awareness for their children’s developmental disorders and funding for needed treatment and support. It was challenging work; at the time, only about one or two children out of 1,000 were diagnosed.

But almost overnight, the movie “Rain Man” brought the term “autism” into public consciousness. The film was a “runaway success” according to the Guardian, winning four Oscars, becoming the highest grossing film of the year, and creating a cultural short hand for autism that had not existed before.

Of course, the movie was not without its issues. The main character was an autistic savant, with a special ability to perform complex calculations, leading to a widespread stereotype of individuals with autism that persists today.

Off-screen, advocates’ efforts gained momentum as they organized parent groups, shared educational resources, and pushed for a brighter future for their children.

Brenda Considine, Autism New Jersey’s first outreach worker and second hire after Director Nancy Richardson, remembers that time well:

“We stood over a hot Xerox machine for hours, photocopying articles and information to send to parents,” she said. “[We] developed a library of print materials to help parents, including a brochure about our organization, a booklet on autism and a pamphlet on how to access extended school year services.”

Those publications helped fill a gaping void in information about the disorder. Hearing that parents needed a comprehensive list of services, too, they undertook the laborious task of creating the state’s first-ever autism services directory in 1985. They included a “Checklist to Assess Service Appropriateness”, which helped parents analytically look at a program and make informed decisions about which services their children received. Over the decades, that checklist has been expanded and improved, and remains a valuable publication for families across the state as they navigate the early years following their child’s diagnosis.

In libraries and community centers throughout the state, Considine and Richardson organized parent groups, providing much-needed emotional support — Considine said the parents would group together in the parking lot after the formal group session ended, hungry to connect, and several groups eventually spun off to create their own local non-profit organizations. With an early commitment to evidence-based practices, the pair endorsed ABA therapy and brought in professionals to consult with the parents.

The pair also established Autism New Jersey’s signature helpline, fielding calls from parents and professionals alike and establishing the foundation for the organization’s current information services offerings.

“There were many late nights then,” Considine said. “There was a lot to do. There was no answering machine, no phone trees, no email … the phone rang and Nancy or I picked up. And if the person on the other end of the line was a parent, it was always Nancy who wanted to take the call — and she would stay on that call for as long as that parent needed to talk.”

Considine and Richardson took note of the parents’ and providers’ concerns and brought them to the attention of law makers in Trenton. They partnered with the state’s major disability groups to increase government funding and expand educational service options and led the charge for passing the New Jersey Family Support Act, which gave families and individuals more choice in how they used government stipends.

As part of their campaign to pass the New Jersey Family Support Act, families visited legislative offices across the state to petition lawmakers. In an article for the New Jersey Council for Developmental Disabilities, Considine recalled a visit with a senator from the shore area:

“Initially, he was not all that supportive — he thought family support amounted to state funded baby-sitting. But with their children in tow, these parents forged on. Five minutes into the meeting, the flagpole in the office had been knocked over, there was a child under the desk, and another child who, at the age of 9 or 10, needed to have his diapers changed — and there was no place to do that in a legislative office. Needless to say, the Senator signed on to the bill. After being introduced to their reality, the Senator really got it!”

During that decade, Richardson and her team racked up other legislative wins that enhanced both housing and targeted educational opportunities for individuals with autism. On the national stage, advocates celebrated the reauthorization of the Individuals with Disabilities Education Act (IDEA), which for the first time included a separate category for autism and mandated that schools develop a plan to help students transition to life after graduation.

Yet for every advancement, there were some drawbacks: the Family Support Act allowed families to choose how to spend their government stipend (one family said they needed a ramp for their front door, another needed adult diapers), but it also meant families had to jump through bureaucratic hoops to obtain the stipends and left them wondering every year if the state would fully fund the program. The federal IDEA act mandated an appropriate education for students with autism, but many school districts did not have the funding or expertise to provide it. There were promising advancements in ABA therapy which helped many individuals, especially those with severe challenging behavior, live more safely in their communities, but many self-advocates now speak out against it, saying the autism community should focus on acceptance instead of modifying behavior.

Like many advocacy collations throughout American history, the autism community was comprised of various groups with differing needs, and they didn’t always agree. But when they worked together, they changed New Jersey and the nation for the better. The work of Richardson, Considine and other passionate families and advocates in the late 1980s and early 1990’s laid the groundwork for the start of a new Millennium, with more funding, more support, and more understanding for individuals and families navigating autism diagnosis.

Autism New Jersey has always operated on the power of connections, and we’d love to hear from you.

Continue to explore Autism New Jersey’s 60 year history