When I became a parent, my anxiety grew astronomically. Minutes after the births of my sons, I felt entirely responsible for the fate of these little human beings. I was the Earth and they were seemingly the Sun around which my every decision revolved.
Parental worry is a common problem and it can take a long while for new parents to reduce all-consuming anxiousness about their children to a practical sense of concern. But what if that concern is amplified by parenting a child with autism? Researchers note that parents of children on the autism spectrum experience more stress than parents of typically developing children do. These stressors continue well beyond a child’s 18th birthday, leaving many of parents wondering: What will happen to my child when I am gone?
Neuroscientist Susan Bookheimer, Ph.D., an autism expert from UCLA, says she understands the fears these parents face. “Even though I am a researcher, I will always think of myself as a mom first,” she says. “As a result, the most important thing I’ve learned to do as a parent is to step back from a preset idea of who my child would be. I left behind preconceived notions and I forged ahead with my research and my remarkable child by my side.”
Bookheimer is using her research to help fellow parents manage their worries while also making major strides in early detection and intervention. “The challenge of today’s research is to address the problems of the future,” she says. “In doing so, clinicians can better help parents come to terms with the unique and wonderful child they are raising.”
Autism spectrum disorder (ASD) is the fastest growing neurodevelopmental disorder in the U.S., affecting approximately one in 68 children. Many questions – Will my child be happy? Will my child be safe? What will my child’s future hold? – plague parents of children with autism. Addressing them can be complicated, involving exploration of possible career plans, housing, caregiving and financial support.
Acceptance is the antidote for the weight and worry that all parents experience, and information is the instrument that can help parents of children with autism make plans to improve their children’s quality of life. Bookheimer’s motto, “Today’s research is tomorrow’s treatment,” serves as the driving force behind her leadership with the UCLA Autism Center of Excellence, which spearheads several research projects.
Bookheimer’s focus is on using brain imaging to identify risk factors for autism early in life, predict future diagnoses and, ultimately, facilitate early intervention. Much of her work results in a greater understanding of the basic mechanisms of autism, as well as what is happening in the brain, with the goal of facilitating more targeted and precise treatment. This does not mean, however, that her work is limited to infants.
Bookheimer emphasizes the importance of research for all kids on the spectrum, and the program invites participants ranging from birth to adulthood. She encourages parents to check out the Center for Autism Research and Treatment website at autism.ucla.edu There, families can find clinical services, resources and various ways to take part in the forward-thinking and free studies underway. Bookheimer’s work and the work of others depends on the participation of individuals with and without autism – and their families. She notes that new studies begin all the time. “If there isn’t something suitable for one’s child at the time, check back in six months and keep checking back,” Bookheimer advises. You’re likely to be rewarded with hope for the future.
Bookheimer’s hope, meanwhile, is to improve the lives of children and get the research out to families, schools and medical practitioners. “We must fight against a conspiracy of quiet,” she says. “We must make it OK to say, ‘I have a child on the spectrum and I need to know what’s out there to help me.’ While the stigma associated with autism has improved in the last 20 years, it can still be difficult for people to speak out. Allies, educators, family members and physicians must work together to speak in a loud voice in order to make sure the information gets adequately disseminated.”
This isn’t always easy, but the information is out there, and communities are growing as we are all touched by the wave of autism. More children diagnosed with autism means, in the long run, more adults with autism. Bridging the gaps, maintaining hope, managing worries and engaging with research can help improve lifelong outcomes, leading to what every parent hopes to gift their child: a life well lived.
