Act Early Against Autism— Jayne Lytel

Before having children, Jayne Lytel spent her career as a journalist and nationally syndicated columnist. When her son Leo was diagnosed with autism in 2001, she put those same skills to work in researching autism and its treatments and fighting for access to them Leo needed. In Act Early Against Autism, Lytel, who has since founded The Early Intervention Network, draws on her own experience of dealing with what can be a devastating diagnosis, to guide parents of children with autism through the process of diagnosing and treating this brain disorder. It was a story with plenty of challenges, from failed school admission attempts to filing for personal bankruptcy, but today Leo no longer tests on the autism spectrum and is fully mainstreamed into the schools.

For parents newly facing an autism diagnosis, Lytel offers both hope and honesty. She understands the denial and the despair that can come with it, especially when parents may have to let go of the image they had of their child’s future. Autism can vary widely in severity and have myriad effects. Furthermore, while some children, such as Leo, eventually can recover to function at a high level, this is not the case for all of them.

Lytel is open about the challenges that parents face. These can start even before a diagnosis as parents find signs that something is wrong and must sometimes push aggressively when doctors advise them to wait and see. Even after a diagnosis, deciding on the correct treatments and practitioners, obtaining educational accommodations, and simply paying for these intervention can be formidable challenges. Lytel describes the difficulties that she and other parents face in extracting essentional services from school districts but also offers strategies that brought her success in obtaining them.

Act Early Against Autism is a perfect blend of personal narrative and well-researched, tried-and-true practical advice The book is clearly laid out with boxes of “Fast Facts,” an autism “red flag” checklist, diagrams on child development, and suggestions for other sources to consult. It also gives answers to questions that parents may not know who to ask, such as how to advertise for a student therapist, how much various treatments cost, which insurance codes to use, and how to navigate the legal aspects of obtaining the correct treatment.

Lytel also delivers a cogent summary of some of the many approaches that exist to dealing with autism from the rigidity of some forms of Applied Behavioral Analysis, which teaches autistic children to communicate through positive reinforcement, to looser approaches that emphasize play and interaction to biomedical treatments. Overall, she offers a compelling case for starting treatment early, even before a diagnosis, in order to give children the best chance possible to learn and develop the skills they will need in the mainstream world and reduce autistic behaviors.

Lytel has won considerable praise for Act Early Against Autism, especially from others dealing with autism spectrum disorders. Bob Wright, former chairman of NBC Universal and co-founder of Autism Speaks, said, “This intelligent and compassionate book from Jayne Lytel will help parents become informed and effective advocates for their children.” Matthew Melmed, J.D., Executive Director of Zero to Three, has called it “[a] vivid and astounding story of love, loss, and recovery, with an added kicker: hard-won wisdom and solid, credible advice.”

Lytel lives in Washington, DC, with her family and is director of marketing for Zero to Three as well as executive director of The Early Intervention Network at www.actearly.org. Her personal website is www.jaynelytel.com.

— Caroline Patton