Jennifer Msumba’s book on living with autism, “Shouting at Leaves,” begins with a moment of dread.
She was in her mid-twenties and, due to her history of self-harm, had spent the previous decade living in nursing homes, group homes and a public hospital.
The center she was in now seemed like a promising place with its Disney themes and pastel colors. But those impressions quickly faded and then disappeared after she was taken to an empty classroom, strapped to a four-point board and shocked with an electronic device.
Msumba remembers thinking, “How the hell did this become my reality?”
She answers this question in her book, published in November.
His story, “Shouting at Leaves”, traces life from early childhood – as the youngest in an Andover family of four.
It has been a puzzling odyssey for the daughter of Janet and Cameron Msumba, a cardiologist from Malawi, Africa.
Jennifer Msumba, 44, has lived for 12 years in a neurological center near Tampa, Florida. For reasons of confidentiality, she prefers not to disclose her name.
In recent years, she has directed films, written and performed songs, broadcast podcasts and performed in a church musical ensemble.
His projects are for people with autism, a bridge to those who care for them and to those who want to better understand people with the disease.
In an interview with Msumba a few days before Christmas – she was visiting her mother in North Andover – she said she wrote her book to help and encourage people who have been through what she has been through.
As of January 31, Msumba had sold around 1,000 copies of her book through Amazon sales and at in-person book signings.
Its readers include scholars and students.
Michael Bakan, professor of ethnomusicology at Florida State University, put Msumba’s book on his reading list for his music and neurodiversity class.
He said “Shouting at Leaves” is an extraordinary memoir of beauty and power and a classic among books on the autistic experience.
In early April, Msumba will visit FSU as a Distinguished Guest Speaker in the Society for Musicology Lecture Series.
On April 9, she is scheduled to perform a 60-minute set at the Word of South Literature and Music Festival in Tallahassee.
What does she think of this?
“I’m both nervous and on cloud nine, I guess,” she said.
Msumba has experienced triumphs and despair as completely as anyone.
In his youth, a combination of concurrent events and changes made life more difficult for him. They included a difficult transition into adolescence, her mother’s cancer and her father’s death in 2001.
She dedicated her book to her mother, a retired teacher from Providence, Rhode Island, granddaughter of an Italian immigrant.
Janet said her daughter was a creative child with a talent for stories, music and art.
Janet still has poems, stories, artwork and handmade cards from her daughter’s childhood.
By the age of 3, she was reading and soon poring over her brother’s church magazines, bound by a self-imposed rule: circle all familiar words, including “and “, “the” and “God”.
“That was just the beginning of the rules I would make for myself to try to keep my world predictable,” Msumba says in his book.
Msumba was overwhelmed by the sights, sounds and textures of everyday life.
She struggled to communicate with classmates and keep friends and was hurt by teasing and confused when her peers told her to stay away from them.
Predictability remained elusive for the child. More so in his teens and beyond.
Only later will she be diagnosed with autism and understand why she experienced the world the way she did.
Autism, recognized as a spectrum disorder today, was less understood in the 1980s.
The term wasn’t even included in the Diagnostic and Statistical Manual of Mental Disorders until 1980, said Rocio Rosales, coordinator of the master of science degree in applied behavior analysis and autism studies at the University of Mass. Lowell.
Thirty years ago, it was common for people with autism to be misdiagnosed.
Far fewer women than men are diagnosed with autism.
“Recent research on this topic indicates that women (girls) tend to mask autistic traits better than men (boys) when symptoms are less severe,” Rosales said.
Rosales says there may be benefits to seeking out creative outlets for people with autism, especially if they have a particular interest in it.
“It is important, however, to take into account the interests of each individual, because each person with autism is unique,” Rosales said.
Msumba recounts in her book how she reconnected with the vital and creative part of herself that she had as a child.
His memoirs are the latest in a series of efforts.
His 2020 film “The Fish Don’t Care When It Rains” was one of 87 films submitted by filmmakers nationwide and won Best Film at the Easterseals Disability Film Challenge.
In her book, “Shouting at Leaves,” she does not name the residential facility where she and others were shocked.
Naming it was giving the place a power it didn’t deserve, she says.
Msumba acknowledged that she and others have named the establishment and denounced its practices in the past, and that any Google search would reveal what she and others have previously said.
A Google search of her name, “Jennifer Msumba” and “shocks” brings up the name of the facility, The Judge Rotenberg Center in Canton, Massachusetts.
The center has been the subject of litigation over its controversial skin shock therapy.
The Food and Drug Administration in 2020 banned the use of its graduated electronic decelerator, but in July a federal appeals court overturned the ban.
The Judge Rotenberg Center did not respond to an interview request.
Meanwhile, Msumba will continue to use her voice for herself and other autistic people.