Autism Acceptance: Where We Have Been To Where We Are Now

Autism Acceptance

History, as a whole, is simply a series of relationships. These range from the personal, to the local, to the national, and span from friendships to economic relationships to political ones. These relationships, and who we interact with, helps us form moral and cultural concepts.  Among these concepts, and one that has often been fluid, is disability, and especially disabilities like autism that have been misunderstood since their original conception. Although the word was only coined by Eugen Beuler in 1910, and then the disability as we understand it now was first described by Hans Asperger and Leo Kanner in 1938 and 1943, respectively, autistic people have always been present and a part of all areas of history even if our participation in the world has not always been positive.

Cultural Effects on Autism Acceptance Throughout History

The real-life denizens of the Lenape Indian Camp would have had a different relationship to their autistic friends and family members than their Western counterparts. To quote from the excellent book Native American Communities on Health and Disability: A Borderlands Dialogues by Lavonna Lovern and Carol Locust,

“There are many Native American languages that have no word for “disability” or “handicapped.” These differences are considered part of the individual and are to be dealt with by balancing the limitations with the strengths of individual. Traditionally, individuals with differences are seen as having the same dignity, value and importance to the community as all other members. Removal or segregation of the individual of difference not only denies that individual the Indigenous way of being, but it damages the community, which has now lost a valued member.”

While this quote does not speak for every Native American or indigenous group, it provides a stark contrast to how disabled people, including those who we would now describe as being autistic, were treated at the same time by western societies. Disabled people were considered a burden on the family, and often kept at home, unable to live any sort of life. Disability was considered a punishment from a religious perspective in many cases; as if someone had chosen to be born with autism, or with spinal bifida, or any other number of disabilities.

Lenape Indian Camp

The 19th century and the world of Prairietown did not see much improvement. This was the period where disabled people were sent to residential schools and hospitals with the intent of giving them access to better treatments by trained professionals, at the expense of the state, and removing the “burden” from families. 

Indiana’s Impact on Autistic Individuals

In Indiana, this resulted most notably in the still-extant School for the Blind and Visually Impaired and School for the Deaf, and the defunct asylum and state hospital system in the 1840s, despite the original bill establishing the state hospital being passed in the late 1820s. For those who knew of these supports, their family member would be sent away to Indianapolis to receive the best support that was known at the time, and to reduce the presence of their disability.  Even until the 1970s, these schools were considered the only option for disabled students.

While the Indiana School for the Blind and Visually Impaired and Indiana School for the Deaf have become excellent institutions which are regularly given accolades for academic excellence as well as the way they support students in becoming who they want to be, this was not something the state hospital system allowed. Many of the disabled patients at the various state hospitals were used as medical test subjects, for both reasons related to their disability, and for other treatments where finding test subjects may be difficult. 

1863 Civil War Journey
1863 Civil War Journey

This is what would have continued through the Civil War and beyond. Yet, even with the accepted treatment of autistic people being institutionalization, we remained. Understandings of autism have expanded over the years, and while it is wrong to assign diagnoses to historical figures, one can only imagine that with how often autistic people are undiagnosed today due to misconceptions of what autism is, how many historical figures, both known and unknown, were autistic. Even though our conception of this disability is more recent, it is fair to say that autistic people have always existed.

Conner Prairie’s Bold Steps to Offer Programs for Autistic Individuals

This is also a history that parallels that of the organization of Conner Prairie, not just that of the time periods that Conner Prairie interprets. By the 1960s, the concept of the living history museum was starting to be understood, and at the same time autism was a diagnosis that, while still attributed to refrigerator mothers, was no longer a complete mystery. And as Conner Prairie came into the 21st century, finding its role as a premier space for history education using living history as a tool, the museum also found itself in a space where it could do good that no other museum in Indianapolis had been doing at the time: offering programming for autistic people.

William Conner House and 1859 Balloon Voyage
William Conner House and 1859 Balloon Voyage

The “autistic revolution” started around 2011. It was here that networks of self-advocates, connected by robust and accessible social media networks, began to really have an impact on how we consider autism. They pushed for our identification not just as a group of people who have the same disability, but as a sort of cultural and social bloc with similar lived experiences. Inadequacies in how autism was considered at large — as a purely medical condition, as something that ruined families as certain large organizations claimed, as something to be pushed back and hidden to appear “normal” using tools such as Applied Behavioral Analysis, or ABA therapy — were questioned, and our voices began to call for inclusion, as well as understanding of how these conceptions harmed those who didn’t fit in the mold society placed for autism.

Conner Prairie was the first museum in Indianapolis to answer the call. In 2013, the longest-running sensory-friendly programming in Indiana was started at the museum.  Staff received training from local organizations and supporting toolkits were placed in quieter spaces, all marked on a map sharing some of the sensory experience at the museum. Most importantly, the actual interpretive experience — save for adjustments to the sensory profile — remain the same, providing a top-of-the-line entry point into the museum for those who might not otherwise feel like it is an experience they can comfortably engage with.  While this programming has spread across the area, Conner Prairie continues to be a leader in providing excellent and forward-thinking programming for autistic people.

Sensory Friendly Hours

Find out how Conner Prairie is offering sensory friendly programs to become a welcoming experience.

It is also, personally, one of the museums I have most enjoyed.  My grandparents lived in Indianapolis.  I grew up visiting Conner Prairie most summers, especially attracted to the Animal Encounters area, which I now know to be one of the best sensory spaces at almost any museum, in my personal opinion. I have been in touch with the folks at Conner Prairie since moving to Indianapolis in 2019, starting my own journey in first my Master’s in Museum Studies at IUPUI, and now my PhD in Special Education at Indiana University. This is a journey that I would not have been able to make in part thanks to the support of Conner Prairie’s staff, as well as the museum’s role in helping provide my love of museums.

Conner Prairie has proven to me that they care about one of the central themes of Autism Acceptance Month: prioritizing the autistic voice. They are not putting up a puzzle piece, a symbol many autistic people view as one that harms us, or changing a background photo to match that of an organization that speaks for us yet calls us burdens who should be cured. They are not performing lip service where they say we are welcome, or only make efforts to make us welcome once a year. They run monthly programming that provides an entry point, train staff and provide supplies to make every day one where you can find support in your visit. Most importantly, they reached out to me both to write this blog post, as well as to help them find and moderate the panel for this month’s Storytelling Series, which has three autistic people who all will be sharing their own stories with the world.

Tune into our storytelling series to learn about this months storytellers.

My name is Ross Edelstein. I am a PhD student, soon-to-be published author, museum professional, cultural researcher, and autistic man.

Happy Autism Acceptance Month.

               

About the Author

Ross Edelstein is a special education PhD student, expert on anti-ableism and access in cultural institutions, and researcher with a focus on helping make cultural organizations like museums welcoming for autistic people.  He is also a avid home cook, player of video games, lover of music, and an autistic man.