Our History 1975-1985: Community Inclusion

From Institutions to Inclusion: How New Jersey Parents and Advocates Reshaped the System 

It’s 1975 and in a tiny office in Princeton, New Jersey, Nancy Richardson is making history.

Richardson, a mom of two, knew something was amiss when her six-month-old son, Geoffrey, didn’t show emotions or respond to other people like his older sister had. But in the early 1970’s, information was scarce. 

“We probably had not even heard of ‘autism’ when we started to say, ‘somethings wrong here’,” Richardson said. 

And for good reason — at the time the Diagnostic and Statistical Manual of Mental Disorders (DSM), the book doctors use to categorizepatients’ diagnoses, did not include an entry for autism. It only mentioned childhood schizophrenia could manifest with “autistic, atypical, and withdrawn behavior,” leaving children such as Geoffrey in a medical grey-area, often without proper treatment or access to education. 

But larger cultural forces driven by dedicated, outspoken parents like Richardson paved the way for rapid change. For years, advocate groups had been sounding the alarm on large institutions for individuals with learning and developmental disabilities, often claiming gross negligence and poor quality of life for people who were committed. 

Claire Mahon joined New Jersey’s “Division of Mental Retardation” in 1976. In a 2004 article, she described the awful conditions in the state’s institutions at the time: 

“There were as many as 40 people in a ward,” she said. “The staff lined the beds up next to each other. It was not conducive for personal growth, no matter how dedicated the staff had been. The institutions were like Army barracks, no personality. There was not even a night table for personal [belongings] — just a bed in wards segregating men and women.”

The patients were unable to enjoy even the simple pleasures in life, like a fresh strawberry on a hot June day, according to Mahon, because to the institutions, strawberries would be too expensive. 

The steady drumbeat of advocates calling for greater community integration and changes to federal Medicaid standards incentivized New Jersey’s institutions to adopt more humane living conditions, reduce the patient to caretaker ratio, and consider who could be served in the community. These changes resulted in approximately 3,000 individuals moving out of the institutions and into community-based group homes or foster care settings. For those first few decades, the federal government fully funded group homes with Medicaid dollars, without requiring states to contribute to them financially.

“The state got a great deal,” Mohan said. “And people who care about developmental disabilities saw this as a commitment from government toward our agenda of community inclusion.”

Meanwhile, Richardson had found an appropriate school and treatment for Geoffrey. And in the course of learning to advocate for her son, she had become an authority on special needs services in the state, helping other families make sense of their own children’s disabilities. In 1981, she was tapped to lead Autism New Jersey, then called the Council of Schools and Agencies for Autistic Children (COSAC) and served on several state advisory boards and task forces. 

Richardson and her small team established themselves in that tiny Princeton office and quickly got to work. They created the state’s first group home for autistic women in New Egypt; started parent training programs, grounded in the fundamentals of ABA therapy; and coordinated respite services. Their work helped create the very infrastructure of behavioral health care that the state relies on to this day. 

As more individuals were diverted from institutions and back into the community in the late 1970s, parents campaigned for better diagnostic and therapeutic services. Their efforts paid off, with the DSM formally recognizing autism as a separate disorder in its 1980 edition. This paved the way for more children to receive a formal diagnosis and for medical professionals to create more targeted treatments and therapies. Special education services grew rapidly, too, as parents learned about their children’s right to enroll in public schools, established through a 1975 law. 

And through the advocacy efforts of groups like Autism New Jersey, more children and adults were integrated into their communities. Individuals with autism who were previously institutionalized were able to live semi-independently in group homes. They went to dances, worked at local businesses — and could pick their own fresh strawberries on a hot day in June.

For the wider autism community, the mid-1970s to mid-1980s were banner years, marking collective achievements that ushered autism research and services into the modern era. 

But from their office in Central Jersey, Nancy Richardson and her team were just getting started.  

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Continue to explore Autism New Jersey’s 60 year history