This is (mostly) a mother’s memoir of raising a daughter with autism. Early in Emily Grodin’s life, her parents see signs of her intelligence, but things become more complicated as Emily grows older and doesn’t speak. Her parents, Tom Grodin and Valerie Gilpeer, are both 40-something attorneys. They have high expectations for their daughter and plenty of money to invest in therapies. You might think this makes it easier for them. Maybe those resources lighten their load, but it doesn’t take long to see how challenging it is for any family to live with a nonverbal child in a neurotypical world.
When it comes to education, Emily’s mother expects school staff and peers to treat her daughter with respect. She meets roadblocks every step of the way. After witnessing low academic standards and questionable behavioral interventions in a specialty classroom with other nonverbal students, she advocates for Emily to learn in regular classrooms. This isn’t a case she makes one time–it’s a literal legal battle. She sues the school district on a yearly basis to force them to provide the education that Emily is entitled to by law.
At home, Emily is often agitated and will spend entire days and nights screaming. Tom and Valerie become socially isolated, even from their own families and other families living with autism. Their team of helpers includes ABA therapists, caretakers, and speech therapists. ABA is controversial, and that’s evidenced by Emily’s loud objections to the sessions, which occur daily for hours at a time. She is more open to speech therapy, but progress there is slow. When she’s twelve years old and still speaking only a few words, her mother learns about facilitated communication, using keyboards and visual images on a screen as a way for non-verbal people to express themselves. The speech therapist shuts down this line of inquiry, insisting that Emily has a drive to speak and giving her an “out” or another way to communicate will squelch her motivation.
This moment was key for me as a professional. It is a stark reminder that one’s own biases are always present and may lead us away from what’s best for the people we serve. Of course a speech therapist prizes speech, but that shouldn’t mean that alternate approaches to communication are forbidden. It is key for professionals and consumers to keep eyes open to bias and personal values sneaking into decisions that impact the lives of others.
So speech therapy continues. Emily is enrolled at a mainstream high school and participates in regular classes, despite still being nonverbal. Her classes, including math, and English, are demanding, and Valerie knows that Emily is capable of learning the material. She has some social interactions, such as a group of girls that invite her to the mall, and a date to the prom, which isn’t the positive experience her parents were hoping for.
Another part of the book that stood out to me was a moment when Valerie reflects on several cruelties and indignities she witnessed during Emily’s school years. These incidents often made her blood boil, while Emily seemed unconcerned, and this was confirmed years later when Emily, at age 26, finds her voice through facilitated communication. She doesn’t have much to say about these memories. I think it’s a good lesson about parenting when we realize that our children are their own people. Our hearts, dreams, goals, and outrages are only that–ours. Children have their own, and we can’t presume to know what they are.
Emily is 26 when they finally give facilitated communication a try, and it works beautifully. She types complete thoughts with perfect grammar and spelling about her experiences and feelings navigating the world as a non-verbal person. Those high-school English classes come in handy when it is time to type, so much so that Emily enrolls in college after learning to type. “I Have Been Buried Under Years of Dust” is a quote from Emily. She becomes a poet and author, and her words are interspersed throughout the book.
She still has some stimming behaviors that are not appropriate in all contexts, and she can only type with a facilitator there to keep her on track. Her parents feel some concern for Emily’s life and safety in the long run. Can she live safely on her own? Who will care for her when her parents pass away? This book is far from a fairy tale or happily ever after. It shows the extreme challenges of being (and loving) a neurodivergent person in a neurotypical world. But the beauty of the story–parents who give without ever giving up, and a daughter finding and using her voice after 26 years of frustration, is undeniably inspiring. It asks important questions about how families and societies can be there for people who are different.
A Therapist's Book Club 