CAMBRIDGE, MASS., December 1, 2011—When Anjali Sastry received the formal diagnosis that her three-year-old son had autism, she felt—as any parent would—lost, afraid, and helpless.
But after the shock wore off, she got educated. She read every book and scientific study about autism she could get her hands on. She shadowed her son’s therapists, and met professors of special education doing promising research. She hunted down developmental psychologists to get ideas on learning techniques she could try with her son at home. She built teams of helpers—from teachers to family members to babysitters—and designed newsletters and reports that would support her child’s learning. Over the years, whenever a friend, colleague, or friend-of-friend received a diagnosis of autism for one of their children, Sastry was the person to turn to for help. Many people told her: “You should write a book.”
And so she did. Sastry says her book, Parenting Your Child with Autism, is one that she wishes she could have received all those years ago when her oldest son was first diagnosed. The book, co-authored by Dr. Blaise Aguirre, is both a handbook to help caregivers choose the right treatments and educational approaches for their child, but also a self-help guide filled with wisdom and warmth from an empathetic mother who understands the complexities of parenting children with special needs. (Sastry’s younger son has Asperger’s, an autism spectrum disorder.)
“Parenting a child who has autism is a journey—one that I’ve been on for over ten years now,” says Sastry, who is a senior lecturer at MIT’s Sloan School of Management. “When your child has autism, every decision can seem weighty because you’re working so hard to help your child learn without the advantage of the full complement of skills, capabilities, and motivation that are mostly inherent in typically developing children. My goal is to help parents make smarter decisions by becoming the special kind of experts they need to be when it comes to their kids.”
Sastry, whose professional focus is on global health delivery—providing medical care in poor settings where needs are high, aims teach caregivers “how to blend research with action by applying the scientific method” to their parenting.
“There is so much data about autism coming out all the time,” she says. “Parents must have an understanding of the ideas supported by those studies, but in order to choose the best options for their kids, they ought to assemble their own evidence. This involves gathering data about their child based on the time they spend with them, and experiments where they’ve tried new things at home and school; making sense of it with the help of doctors, teachers, and therapists; and then combining it with other information. Only then will they be able to evaluate whether their child could do better with a new approach, dietary change, medication, or treatment.”
The book begins with a survey of current thinking about autism and its causes and cures. The next section is a guide to the diagnostic process, and gives advice for parents on how to collaborate with medical professionals to select the right interventions. It also gives suggestions for partnering with teachers and schools.
The final part of the book contains personal and professional recommendations to help parents build an everyday life that works for the entire family. Its “parent-friendly” techniques range from simple programs that shore up a child’s social interaction and language, to approaches for teaching household chores – clearing the table, making the bed, for instance - that will foster the child’s independence. These ideas are based on anecdotes from Sastry and other parents as well as medical experts.
“Parents of children with autism report very high levels of stress,” says Sastry. “But there is also evidence that they rebound within two years after getting an initial diagnosis. My best advice to families coming to terms with the diagnosis is that even if the way forward seems difficult right now, it will get better. You do regain your footing. If our book helps you get there any faster, we’ll have reached our goal.”
Parenting Your Child with Autism: Practical Solutions, Strategies, and Advice for Helping Your Family by M. Anjali Sastry and Blaise Aguirre (New Harbinger Publications, May 2012)