New book, The Autism Revolution, offers hope, help for families

Autism. For decades, the word meant an immutable brain disorder, one determined solely by genes and that was only marginally responsive to therapies.

Today it is coming to mean something different and more manageable.

A growing body of research is dramatically changing the face and future of autism. In The Autism Revolution, a new book from Harvard Health Publishing that I wrote with Karen Weintraub, I explain this hopeful evolution in autism science and offer practical strategies for families to help their children right now.

I’d like to share four of the most profound changes:

More than genes. Experts once argued that autism was purely a genetic disorder. Yet no one has found anything close to a genetic smoking gun when it comes to autism. Dozens of genes have been associated with autism, but all of them together account for less than 15-20% of diagnoses. Decades-old research suggested that identical twins almost always share identical autism diagnoses, but recent research shows that’s not true. Scientists are also learning more about possible environmental contributors to autism. We’ve long known that certain toxins were associated with autism, but a 2011 study showed that women who took prenatal vitamins before conceiving and in early pregnancy were less likely to have a child on the autism spectrum. Another found a link between antidepressant use during pregnancy and a child’s autism. Though there is reasonable debate about how much genes contribute to autism and how much the environment contributes, few experts today argue that genes are solely responsible for autism.

Beyond the brain. We’re discovering that autism is not just a brain disorder but a whole-body condition. Roughly 70% of kids with autism have digestive system problems. Children on the autism spectrum often have sleep problems and immune system troubles. Seizures are also common. Whatever autism “is,” it doesn’t affect just the brain. Science is showing many ways that brain and body deeply influence each other. Traditionally, parents have been encouraged to pursue therapies directed at their child’s brain and behavior issues. The family stories presented in The Autism Revolution suggest that treating these so-called ancillary symptoms can make a profound difference in the family’s life, and even in the autism itself.

Kids can improve. A lot. Autism may not necessarily be fixed for life. We simply cannot ignore the many stories of recovery. It is possible that some types of autism naturally improve with age, or that in some cases interventions can beat back many or most of autism’s symptoms. A study published earlier this year found that fully one-third of teenagers who had once been diagnosed on the spectrum no longer fit the diagnosis. It’s not clear how many of those teens were originally misdiagnosed, and how many had outgrown or been treated out of their autism. It’s important to note that those with the most physical challenges were least likely to get off the spectrum. Interestingly, many children on the autism spectrum show a significant improvement in their language and social skills when they run a fever. This hints at the possibility of change and the presence of a capable child inside of the “autism.” These studies and others suggest that autism may be a brain state rather than a form of permanent damage.

Autism does not equal intellectual deficits. It used to be thought that at least three-quarters of people with autism had significant cognitive impairment. But the latest research demonstrates that people on the autism spectrum often have typical—or even extraordinary—intelligence. Many struggle in showing what they know to the rest of us.

A growing body of science and clinical experience tells us that we have badly misjudged autism. But this work is also pointing us in new and promising directions. The new vision of autism offers great hope for scientifically-based paradigm shifts in our approach to this condition. The Autism Revolution offers ways parents can put these ideas into action today.

Dr. Martha Herbert is an assistant professor of neurology at Massachusetts General Hospital and Harvard Medical School. The Autism Revolution is published by Ballantine Books and Harvard Health Publishing. More information about the book is available at Harvard Health Publishing’ website.