Penny Walker Veraar's Blog
January 5, 2023
Lizzie’s Diagnosis
I’d always been interested in people—what makes them alike, what makes them different—what makes them tick. So I studied psychology. I could have taken any one of a number of career paths after finishing my master’s, and it just so happened that a nonprofit treatment program for chemically dependent adolescents in my area was looking for someone and I was looking for a job. So, the course was set. I learned a great deal from those kids and their families and loved it most of the twenty-something years I spent there.
During those years, my younger daughter finished high school and college, married, and started her family. Her second child, a daughter, was born with Down syndrome. I’ll call her Lizzie. We had not expected that and grieved a little, but we soon changed our expectations and moved on. We noticed kids with DS working at Kroger, eating out with their families, and other places in the community. One evening a bunch of young adults with DS from a group home nearby showed up at a neighborhood concert and danced together like they were on Dancing with the Stars. I loved watching them obviously having so much fun. They seemed happy and functional.
As Lizzie developed, I noticed behaviors that I would not associate with Down syndrome. She was super sensitive to certain sounds. If I turned on one specific water faucet, she would put her hands over her ears and scream. She became mesmerized by ordinary visual stimuli such as water pouring or the garage door opening and closing. She also did not develop speech.
When Lizzie was four and my daughter had another child, she became aggressive with the baby and other younger, smaller children—pulling hair, scratching, pinching, and similar antisocial behavior. We could not leave the baby unguarded, and we could no longer take Lizzie anyplace where other children played. No parks. No parent’s nights out. As is common in people with Down syndrome, my granddaughter had hypotonia, meaning her muscle tone was weak and her joints loose. The loose joints meant she could fold her body up like a contortionist. She had a tendency to bolt away from whoever she was with. Restraining her was made difficult by her loose shoulder joints and unusual strength. If we grabbed her around the chest to safely lift her, she could easily slip out of our grasp. We called it “disappearing armpits.” When she started to school, she could also slip out of her restraints on the school bus, which meant an aide had to ride with her.
Her pediatrician repeatedly told us she felt there was something different about Lizzie, something more than Down syndrome, but she didn’t know what. We sought help from a behavioral therapist and, in desperation, made an appointment with a psychiatrist at the Thomas Center for Down Syndrome Services at Cincinnati Children’s Hospital. Lizzie was immediately dually diagnosed with Down syndrome and autism spectrum disorder (DS-ASD).
I had no idea that a child could have both Down syndrome and autism. It seemed too much of a coincidence. Despite studying psychology for six years, I had never heard of it. Apparently, Lizzie’s pediatrician hadn’t either. But I’ve since discovered it is not a coincidence and not that unusual. Research indicates that 16 to 18 percent of children with Down syndrome also are autistic. Some estimate that the percentage is much higher. The Centers for Disease Control and Prevention (CDC) lists down syndrome as one of the risk factors for autism.
During those years, my younger daughter finished high school and college, married, and started her family. Her second child, a daughter, was born with Down syndrome. I’ll call her Lizzie. We had not expected that and grieved a little, but we soon changed our expectations and moved on. We noticed kids with DS working at Kroger, eating out with their families, and other places in the community. One evening a bunch of young adults with DS from a group home nearby showed up at a neighborhood concert and danced together like they were on Dancing with the Stars. I loved watching them obviously having so much fun. They seemed happy and functional.
As Lizzie developed, I noticed behaviors that I would not associate with Down syndrome. She was super sensitive to certain sounds. If I turned on one specific water faucet, she would put her hands over her ears and scream. She became mesmerized by ordinary visual stimuli such as water pouring or the garage door opening and closing. She also did not develop speech.
When Lizzie was four and my daughter had another child, she became aggressive with the baby and other younger, smaller children—pulling hair, scratching, pinching, and similar antisocial behavior. We could not leave the baby unguarded, and we could no longer take Lizzie anyplace where other children played. No parks. No parent’s nights out. As is common in people with Down syndrome, my granddaughter had hypotonia, meaning her muscle tone was weak and her joints loose. The loose joints meant she could fold her body up like a contortionist. She had a tendency to bolt away from whoever she was with. Restraining her was made difficult by her loose shoulder joints and unusual strength. If we grabbed her around the chest to safely lift her, she could easily slip out of our grasp. We called it “disappearing armpits.” When she started to school, she could also slip out of her restraints on the school bus, which meant an aide had to ride with her.
Her pediatrician repeatedly told us she felt there was something different about Lizzie, something more than Down syndrome, but she didn’t know what. We sought help from a behavioral therapist and, in desperation, made an appointment with a psychiatrist at the Thomas Center for Down Syndrome Services at Cincinnati Children’s Hospital. Lizzie was immediately dually diagnosed with Down syndrome and autism spectrum disorder (DS-ASD).
I had no idea that a child could have both Down syndrome and autism. It seemed too much of a coincidence. Despite studying psychology for six years, I had never heard of it. Apparently, Lizzie’s pediatrician hadn’t either. But I’ve since discovered it is not a coincidence and not that unusual. Research indicates that 16 to 18 percent of children with Down syndrome also are autistic. Some estimate that the percentage is much higher. The Centers for Disease Control and Prevention (CDC) lists down syndrome as one of the risk factors for autism.
