It can be simple to provide a medical definition for autism, as part of a spectrum of neurodevelopmental disorders that are typically characterized by difficulties with communication, social impairment, and repetitive behavior.
But most people — in or out of the medical profession — have little understanding of what it’s like to have the disorder or to live with a child who does.
There are two local women, however, who have intimate knowledge of autism, and they called my attention to a recently released novel, “Love Anthony,” by best-selling author and neuroscientist Lisa Genova.
Andrea Brandeis and Marjorie Walsh are cofounders of the Center for Children with Special Needs of Massachusetts, a Weymouth-based private agency that provides much-needed advocacy in school systems for children with a range of special educational and emotional needs.
Brandeis is a Duxbury mother of three teenage children, two of whom have special needs, and has been active in the field for nearly a decade. Walsh, a Medfield resident, has more than 10 years of experience as a special education advocate, and has helped families throughout Massachusetts with children of varying disabilities. She also is the parent of two grown, college-educated children who required special-needs services throughout their schooling.
Both women have the highest praise for “Love Anthony,” which tells the story of two Massachusetts women searching for a way to move forward in their lives after a loss.
In Genova’s novel, Olivia Donatelli is grieving the death of her 10-year-old son, Anthony. After Anthony was diagnosed with autism at age 3, their lives revolved around doctor’s appointments, speech therapists, and behavioral experts — all to no avail.
As the years passed, however, Olivia found herself less and less trying to “fix” her son, and began to discover moments of joy and triumph with Anthony. But then he dies unexpectedly.
Olivia goes from her Hingham home to Nantucket after the death of Anthony, and the breakup of her marriage.
Similarly, Beth Ellis has seen her life change, and not for the better. A note left by a vindictive woman, saying “I’m sleeping with Jimmy,” has put an end to her marriage and her comfortable Nantucket life, plunging her into single motherhood with three girls.
Beth rediscovers writing, a creative aspect that had been packed away with the birth of her daughters. In a chance meeting with Olivia, Beth discovers a story waiting to be told, and the voice that both women need to hear and learn from is young Anthony’s.
In a recent conversation, Genova, a Cape Cod resident who is the mother of children ages 12, 4, and 2, said her novel is a very personal story.
The character of Anthony was inspired by her cousin’s son. As new mothers, Genova and her cousin spent a lot of time together with their babies, and by the time the children were a year old, it became clear that her cousin’s son wasn’t saying a word. At 20 months, they worried he might be deaf, and a year after that, the cousin learned that her son was on the nonverbal end of the autistic spectrum.
“I was there to witness the crashing of all their dreams and hopes and to see the stages of grief unfold,’’ Genova said. “But in time, I also began to witness something exceptional, which is that even though my cousin and her child didn’t have the benefit of all the meaningful ways parents and children rely upon to connect with one another, such as eye contact or physical bonding, what grew into place was simply extraordinary.
“And what I witnessed firsthand was unconditional love.”
From this experience, Genova went on to conduct research with specialists in the field as well as dozens of parents with children who fall somewhere within the autistic spectrum.
“One of my goals with writing ‘Love Anthony’ was to create voices that everyone could hear and relate to, in both the mother and the child. In so doing, I hoped to bring attention to a condition like autism, which is often misunderstood, feared, and even ignored. I wanted to help readers see the humanity inherent in a family’s struggles with it.”
Brandeis and Walsh agree that “Love Anthony” fully accomplishes this goal.
“In my professional life, I live and breathe the experience of families dealing with autism,’’ Brandeis said. “Genova’s imagery of Anthony feeling the weight of his body as he swings over and over again in ecstasy, or lining up his favorite white rocks, or endlessly staring at the blue sky reminds me that there is great joy in being Anthony, and that he doesn’t feel isolated, or different, or the pressure to fit in. This is such a great message to take away.”
She added that the book isn’t clinical, and is accessible to anyone. The key lesson, she says, is that “we all have an inherent desire to connect, even the autistic child himself — and that child may find ways to reach out that are neither typical nor comfortable for us . . . but they are genuine attempts nonetheless.”
Similarly, Walsh said: “I connected to Genova’s portrayal of the mother so much. The social isolation for moms of autistic children is very real. Genova reminds us that when the play dates begin to disappear, along with casual conversations on the playground, or opportunities to attend family functions, a mother also loses her support system and a means of socializing.’’
Genova hopes that in reading “Love Anthony,” everyone will be able to relate to elements in this mother and son’s day-to-day relationship, so that over time, autism and other conditions on the spectrum, such as Asperger’s syndrome, will no longer be the source of stigma, fear, or isolation.
One excellent source of information on autism spectrum disorders, Genova said, is “The Thinking Person’s Guide to Autism,” at www.thinkingautismguide.com.