Dual Diagnosis: Local support for children with Down syndrome and autism launched on North Shore

Mon, 10/27/2008 - 9:03pm

Until recently, it was commonly believed that Down syndrome and autism could not co-exist. Current estimates report that 5-7 percent of all children with Down syndrome are likely to be dually-diagnosed—a percentage substantially higher than is seen in the general population. Autism diagnoses have become more prevalent in recent years—a reported 1 out of 150 children. Families like the Grays are therefore establishing a guide of best practices for an emerging group of children and their families faced with dual diagnoses.

By Wendy Buluwa

Each generation of parent has worries unique to their era. Today’s parents seem most concerned about uncovering the myths and truths around ‘spectrum’ disabilities—the most pronounced of which is autism.

For Charlotte and Bill Gray of Haverhill, the diagnosis of autism was even more impactful given that it was delivered 5-years after the birth of their son Jacob, who was diagnosed with Down syndrome while in utero. Until recently, it was commonly believed that Down syndrome and autism could not co-exist. Current estimates report that 5-7 percent of all children with Down syndrome are likely to be dually-diagnosed—a percentage substantially higher than is seen in the general population. Autism diagnoses have become more prevalent in recent years—a reported 1 out of 150 children. Families like the Grays are therefore establishing a guide of best practices for an emerging group of children and their families faced with dual diagnoses.

In 2003, Gray and two other north shore moms of children with Down syndrome formed a playgroup called Morning Travelers to allow their children to play among their peers and give moms (and dads) a chance to network, discuss concerns, celebrate successes, trade strategies, and enjoy milestones together. Since its founding five years ago, Morning Travelers has grown from three mothers to nearly 100. Given the substantial growth in membership, it would seem the Gray’s have an enormous network of support. Yet, after Jacob was diagnosed with autism, Charlotte began to distance herself from playgroup associates believing that others would not comprehend her son’s new situation.

Dr. George T. Capone, in a research paper titled “Down Syndrome and Autistic Spectrum Disorder (DS-ASD): A Look at What We Know” writes, “parents in this situation almost universally withdraw from local Down syndrome support groups that may provide support. It is critical that parents have an opportunity to meet and learn from other parents whose children also have DS-ASD.” 

With cheerleading from Morning Travelers co-founders, Gray recently launched a special interest group focused on families of children with dual diagnosis--calling it Morning Travelers 2. Both the Massachusetts Down Syndrome Congress (MDSC) and the Down Syndrome Program at Children’s Hospital Boston have helped direct dual diagnosis families to Morning Travelers 2 which has since become a pillar of support for nearly 15 area families from Natick, Mansfield, Andover and Worcester areas, to name a few. Moms in the group meet once a month to discuss outings and activities, updated research and relevant news. To keep members connected, Gray is also developing a chat room and blog and hopes Morning Travelers 2 will provide the sense of community she was a part of creating with the original Morning Travelers.

“I realize that I'm in a little bit of a different place now,” she said. “It’s one thing to have a child with just autism or just Down syndrome, but more difficult when your child is diagnosed with multiple developmental delays. The supportive relationships we build are so important as we can share experiences, provide resources, and together, can make a difference in the lives of our children.” 

Wendy Bulawa Agudelo is a mother of three from North Andover. She is an avid supporter of the special needs community and serves as P&K's special needs liaison.

From Wicked Local Parents