A new history of autism traces the diagnosis of a disability

'The Bathroom Heater at Franziska’s House #1' by Jessica Park

As interest in autism spread from scholarly journals to dinner tables and the evening news, UO historian Ellen Herman saw a gap.

The internet is full of research and debate, but Herman found little in the way of context. Always on the lookout for ways to use research to meet a common need, she decided to help fill that gap with a project tracing the modern history of autism from its early recognition to today.

 The Autism History Project highlights the people, ideas and topics that were instrumental in shaping autism during the 20th century in the United States. She hopes the website fills a void in the conversation about autism, which has surged in recent years as more families, educators and workers are touched by those diagnosed with the disorder.

“In the last 20 years, there’s been a flood of information, narratives and media attention to autism, but there’s been very little about its history,” said Herman, who also serves as the UO’s vice provost for academic affairs and faculty co-director for the Wayne Morse Center for Law and Politics.

When Herman noticed the heightened interest in autism and the lack of historical context, she saw an opportunity to contribute to public discourse and understanding through her research. So she spent several years digging into archival material around the country to investigate autism’s history, notable figures and important milestones.

Her new website, which was launched in January, presents some of her findings in a way that’s accessible to a broad audience.

“This website is for everyone interested in autism as well as anyone interested in medicine and the human sciences, health and social welfare, development and disability, and the history of children and families in the modern United States,” she said, noting that autism’s intersection with education, government, family and medicine has fueled the surge in public interest.

The website includes a number of different components that weave together a comprehensive history of autism. One of these is a collection of profiles about people who have played critical roles in the history of autism, including Hans Asperger, whose name later became affiliated with a diagnosis; Lauretta Bender, a psychiatrist who researched childhood schizophrenia; and Clara Park, an author who published a trailblazing memoir in 1967 about her experience parenting an autistic child.

Park’s child Jessica went on to become an accomplished visual artist who has had her work exhibited in universities, museums, galleries — and throughout Herman’s website. When Herman considered the best visuals to accompany her research, Park’s art was an ideal and fitting choice.

“I am so grateful to Jessica for allowing me to use her beautiful works of art on this website,” Herman said.

The website also contains a timeline, a glossary and a series of essays that cover pivotal topics about autism, like outlining where the term autism originated and considering the autism gender gap. Herman also included an archive of annotated original sources, an effort to integrate both digestible nuggets of information and complete sources into the website.

One of Herman’s primary goals was for the website to be easily accessible to a public audience, including relatives and educators, but she also hopes it will be useful to other scholars.

“I hope it will encourage other people to add to the record,” Herman said. “Autism’s story is important in its own right, but it also helps us to imagine how dramatically the borders of diverse human experiences have shifted over time.”

By Emily Halnon, University Communications