An autistic woman and her mother tell their story in ‘I Have Been Buried Under Years of Dust’

At 25, Emily Grodin had a life-changing experience.

The turning point came when Grodin, who is autistic and minimally verbal, learned to type and began using a method known as facilitated communication to express her thoughts and advocate for her own needs. Now she, along with her mother Valerie Gilpeer, are sharing their story in the joint memoir “I Have Been Buried Under Years of Dust,” published by William Morrow.

Much of this Encino-based family’s struggle involves the struggle of finding the support that Grodin needed.

“For us, the initial challenge was really getting services in place,” says Gilpeer. That included behavioral services, as well as services for occupational therapy and speech and language. “For us, it necessitated actually hiring an attorney, and I’m an attorney, my husband’s an attorney,” she adds. In fact, Gilpeer, who had practiced civil law for years, ultimately moved into disability rights law.

Some background: Facilitated communication is not endorsed by the American Speech-Language-Hearing Association. The organization’s official position is that it’s “a discredited technique that should not be used.” The American Association of Intellectual and Developmental Disabilities has taken a similar position, saying there is “no scientific evidence supporting its validity.”

Throughout the book, Gilpeer addresses the controversies surrounding facilitated communication and the methodologies used to show that Grodin is doing the communicating.

“I’m hoping this will chip away at all of that,” Gilpeer says, “and we will get to the point where this is readily offered as traditional speech and language services.”

For this video call, Grodin was joined by her communication partner, Stephanie Lewis, who facilitated by touching Grodin’s shoulder as she typed responses. When asked how she thinks the book might help people, Grodin responds, “I hope that it shows that there is not one set formula that works for every person.”

In response to a question as to whether the publisher had any apprehension in publishing the book, Mauro DiPreta, senior vice president and executive editor at William Morrow, provided a statement that read in part, “Valerie Gilpeer and Emily Grodin have written a beautifully personal memoir describing their journey to understanding one another. With the use of facilitated communication, Emily was finally able to communicate with the people around her, and with a number of communication partners since, she has consistently revealed herself to be an intelligent, thoughtful, and creative. It has been remarkable and inspiring to see Emily escape the shackles of nonverbal autism.”

Gilpeer said she had originally wanted to find a publisher for a collection of Grodin’s writing. “It was going to be my love letter to her,” says Gilpeer. “That’s all I really wanted for her.”

But that idea soon changed. “We got very little positive response to a book of poetry or essays by a person with autism,” says Gilpeer. “They seem to think that that would not be a big seller, and so people did not really want to take it on, and the expense of taking it on.”

While Grodin’s poetry is included in “I Have Been Buried Under Years of Dust,” the focus is on her journey towards communication. Gilpeer documents the steps taken to find therapeutic and educational support for her daughter, while Grodin recounts her own life in portions of each chapter, which have been left unedited.

Detailing their lives in “I Have Been Buried Under Years of Dust” came with its own set of difficulties. “There’s a tendency to forget things when you’re past them and not really be reminded of what went on,” says Gilpeer. “I think that going back to the dark times is the hardest thing to do, even though it is certainly overbalanced, on the other side, by the emergence and that’s really what we keep focused on is that we had to go through all of that to get to where we are.”

“There were lots of tears in the process” of writing their memoir, Gilpeer says, and they spent time considering whether or not the book was the right thing for them to do. “I think it’s human nature to compartmentalize things that we’d rather not remember,” Gilpeer adds, “but this made us remember.”

Her daughter concurs. “It came as a challenge to revisit things,” adding that it “was a story I needed to tell.”

Today, Grodin is a college student focused on journalism. She enjoyed working on a recent story about climate change and would like to report on homelessness in Los Angeles.

Since Grodin’s diagnosis in the early ’90s, there have been some advances made in understanding the autism spectrum, but Gilpeer points out, there’s still work to be done. “It’s still kind of a mysterious thing,” she says. “I think getting an insight into the way that a person with autism really sees the world and experiences that is really the key.”

And in writing “I Have Been Buried Under Years of Dust” with Grodin, Gilpeer intends to do that. She says, “Emily’s words are far more important in this book than mine, and I really want to highlight that.”

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