Down syndrome and autism spectrum disorder

Learning and growing with a dual diagnosis

As many parents of children with Down syndrome already know, there is a unique experience that goes along with parenthood. Outside exploring working strategies for learning, socialization and behavior, health issues continue to be something of a mystery in the early stages of a family’s life. Multiple pediatrician visits, screenings, tests and sometimes surgeries can accompany the beautiful first years of a child’s life when they are beginning to discover the world around them – bringing surprises around every turn.

St. Louis area mom Adrienne Bievenue, whose son Russell (14) was diagnosed with autism along with Down syndrome at a young age, knows all about that journey and what comes with the surprise of a dual diagnosis.

“We knew something was different about Russell before the medical diagnosis of autism but equated it to his poor vision,” Adrienne said. “Probably by the time he was 2 or 3 yrs old, another mom helped me to realize what Autism was and by the time Russell was 4 1/2 we saw Dr. Mantovani who confirmed Russell was autistic.”

A dual diagnosis of autism spectrum disorder (ASD) and Down syndrome (DS) can potentially be part of the answer to some of the questions a parent has about behavior, cognitive skills and health. In Russell’s case, it means he can struggle with transitions, situations, noises and communication skills – he has never spoken, but has communication skills to get his point across. However, even with the advancements in understanding a dual diagnosis, there are still times when questions pop up.

“Understanding what autism was and how it affects those who have it helped me,” Adrienne said. “Joan Medlen wrote a piece for Disability Solutions* about her son and the dual diagnosis years ago and that has been most helpful! As far as learning to help Russell, my best educator is Russell himself. I am his voice since he doesn’t have one. I am always ‘collecting data’ on him and relaying to others what his needs are. And when all else fails….Google is my friend.”

For families of children with a dual diagnosis of ASD-DS, the diagnosis can bring uncertainty and a lot of questions. For Adrienne, it has been learning that her son Russell had the diagnosis that has made her an advocate for her family and others who face the same questions she once did.

“My first step I took [after learning the dual diagnosis] was to educate the school and our family on how the autism combined with the DS is affecting Russell,” Adrienne said. “I always tell parents to go see a good developmental pediatrician, developmental psychologist or psychologist versed in autism and/or a pediatric neurologist to confirm the diagnosis of autism if they are concerned.”

Adrienne also makes sure to relay to new parents to make sure there is no medical issue masking as autism, such as obstructive sleep apnea, and encourages them to understand how autism affects learning and some habits can overlap with Down syndrome and not be autism. Most importantly, she says, those behaviors have to be dealt with, especially at school, or a child won’t learn to his/her potential.

If you are the parent of a child with a dual diagnosis of autism spectrum disorder and Down syndrome, please join Adrienne and other area parents, along with Life Skills/TouchPoints Autism Services and the DSAGSL, in a new support group meeting November 8. If interested, RSVP to Sherry Bowen at  314-432-6200 orsherry.bowen@lifeskills-mo.org

*To access the Joan Medlen piece Adrienne references, click here. (http://www.dsala.org/articles/DS%20%26%20Autism%20-%20Disability%20Solutions.pdf)

Resources:
National Down Syndrome Society, Dual Diagnosis of Down Syndrome and Autism; http://www.ndss.org/Resources/Health-Care/Associated-Conditions/Dual-Diagnosis-of-Down-Syndrome–Autism/
Interview with Adrienne Bievenue; mom of Russell