Brock University’s Special Collections and Archives has started collecting materials for a new archive on a neurological disorder that affects 1 out of every 100 children in Canada - Autism Spectrum Disorder (ASD).
The Autism Collection at Brock, which quietly launched earlier this year, aims to collect the day-to-day records of people living or working with ASD in order to preserve the wide-ranging history of autism in North America.
So far the initiative has been well received within the ASD community.
The collection’s first donor was noted author and autism activist Temple Grandin, who donated some of her early writings on autism and her main profession, the development of humane equipment and treatment of livestock in the meat industry.
And Tim Page, the Pulitzer Prize-winning music critic and author who has chronicled his own experiences growing up with undiagnosed Asperger syndrome, a form of ASD, has also wholeheartedly endorsed the project.
“Every week I’d pick two names, write an email or formal letter, and send it out,” says David Sharron, Brock’s head archivist, who hatched the idea of creating the collection. “I’ve been knocking on doors and planting the seeds to make people aware of what we’re doing.”
“We’re looking to examine every aspect of autism with this collection,” adds Sharron. “Whether it’s a person growing up writing in a diary, or a mother writing a blog about the good and bad of dealing with their child with ASD, those are the types of everyday things that we’re interested in.”
The Autism Collection will help to strengthen a cluster of ASD-related research and scholarship already happening at Brock in departments including Applied Disability Studies and Child and Youth Studies. It will also help to attract researchers to the University.
“It’s those pioneer days that we want to capture now,” says Sharron. “So that when it comes time for the second wave of ASD researchers who are working on the issue now to decide what they want to do with their materials, they think of Brock.”
A key aspect of the new transdisciplinary archive is for it to be of interest and research value to a wide range of faculties, departments, and disciplines because autism affects all racial, ethnic and socio-economic groups, and is studied from a variety of angles, such as genetics, education, nutrition, social justice and politics.
The collection will include both print (letters, diaries, photos, film) and digital (websites, blogs, databases, images, video) materials and will focus on five key areas: individuals with autism or their caregivers; advocacy work; education, training and technology; autism in popular culture; and scientific research.
“It is an exciting thing for an archivist,” adds Sharron. “Usually when you get a job, you inherit a collection. But this is my first opportunity to pick something to go after, and make it happen. So for me it is a whole new venture. I’ve never done anything like this before.”
The initiative is also has a labour of love for Sharron whose two sons were diagnosed with ASD more than five years ago.
“I want this to be a place for people with ASD to look to and see that they are not alone,” says Sharron. “That they can do great things like the people in our archives. That there are people who are working hard to better understand ASD. I want our collection to be an inspiration.”