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. Continue exploring our history, read more about our second and third decades.
Passionate parents band together, form support group
It was 1965. Millions attended the Rolling Stones world tour; the Vietnam war was ramping up; and the space race was capturing headlines.
And in New Jersey, a group of parents were growing more and more concerned. Studies from that time indicated about two to four in 10,000 children had autism, leading to the impression that the disorder was extremely rare. But there was a medley of other diagnoses with overlapping presentations and symptoms: intellectual disorders, schizophrenia, pervasive developmental disorder-not otherwise specified, or the broad term, “a-typical child.”
These parents struggled to keep their children with developmental disabilities safe, access therapy, and find appropriate schooling. In a world often built for conformity, these families faced stigma, isolation, financial strain, and the sheer exhaustion that comes with around-the-clock parenting.
Harold and Ruth Eder of West Long Branch were some of those parents. When their son, Steven was two years old, he displayed signs of cognitive disability. They consulted with doctors across the country to find a diagnosis and treatment for him, and when they finally landed in the office of a Columbia University specialist, they were given little hope: the doctor advised Steven be institutionalized.
Across the nation, parents were organizing local chapters of the National Society of Autistic Children. These local chapters functioned as parent-support groups, where they shared tips and resources, and envisioned a better future for their families.
The New Jersey group, led by the Eders and four other families, came to be known as the Council of Organizations and Schools for the Emotionally Disturbed. It was a scrappy, volunteer-only operation, and extended its membership to include schools and agencies serving individuals with autism.
It was formally incorporated with the state in 1967 — and soon after, Steven Elder was the first autistic adult on state record to receive services.
Meanwhile, on the national stage, the late 1960s and early 1970s saw growing awareness among the scientific and medical communities about behavioral and developmental disorders, leading to the first issue of the Journal of Autism and Childhood Schizophrenia being published in 1971. The field of Applied Behavior Analysis, borrowing from a slew of other specialties, was in its infancy — and scientists across the world were working in labs to tease out the complex cause-and-effects of human behavior, and develop basic therapeutic treatment.
Medicare and Medicaid were established and vocational programs expanded in 1965. Borrowing ideas and momentum from the civil rights movement, the deinstitutionalization movement continued, and individuals with disabilities and their families fought for the right to access community services.
As New Jersey COSED’s scope broadened and the definition of autism became more uniform, the agency decided to focus its energy upon autism and changed its name to the Council of Schools and Agencies for Autistic Children (COSAC) in 1974.
Just a year later, to the relief of COSAC parents and parents of children with disabilities nationwide, the Education for All Handicapped Children Act (later renamed the Individuals with Disabilities Education Act, or IDEA) passed, enabling children with disabilities to enroll in public schools, and codifying the right to special education and related services.
That scrappy group of committed parents operating on a shoe-string budget eventually evolved into the robust Autism New Jersey, employing more than 20 experts, that we know today. Stay tuned over the next five months to learn more about the agency’s, and the wider autism community’s, challenges and triumphs. And if you were a part of those early, formative decades, send us a note and tell us about it!
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
Autism New Jersey: The First Decade 1965-1975
Passionate parents band together, form support group
A group of parents were growing more and more concerned. Studies from 1965 indicated that about two to four in 10,000 children had autism, leading to the impression that the disorder was extremely rare.
These parents struggled to keep their children with developmental disabilities safe, access therapy, and find appropriate schooling. Their passion laid the foundation for what would eventually become Autism New Jersey. Read more>>
Autism New Jersey: The Second Decade 1975-1985
From Institutions to Inclusion: How New Jersey Parents and Advocates Reshaped the System.
The 1970s and 1980s were banner years for the autism community. Autism was finally listed in the DSM; advocates helped individuals with learning disabilities move from institutions and group homes; and from a tiny office in Princeton, New Jersey, Nancy Richardson was making history. Read more>>
Autism New Jersey: The Third Decade 1985-1995
From ‘Rain Man’ to Real Change: How Advocates Transformed NJ’s Autism Landscape
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. But almost overnight, the movie “Rain Man” brought the term “autism” into public consciousness. Read more>>