During Maya’s* first birthday celebration, her mother knew something was different.
“We were singing ‘Happy Birthday,’ and she had such a blank stare. In that moment, I knew something was off,” recalls Elizabeth Chaillou, who perhaps had special insight into typical childhood milestones given that Maya is the youngest of her five children. Chaillou also noticed for several months that Maya didn’t respond to her name, make eye contact with people outside of their family, say any words or point to her toys. She raised these concerns with Maya’s pediatrician who connected the Chaillou family to their county’s infants and toddlers program.
Eventually, Maya began receiving weekly visits from an occupational therapist, speech therapist and a special educator, who expressed concerns about autism. When Maya was nearly 2 years old, she underwent a comprehensive assessment at The Center for Autism and Related Disorders (CARD) at Kennedy Krieger Institute.
“They diagnosed her on that very same day with autism,” recalls Chaillou. “I think I knew in my heart that was what it was, but hearing those words brought a flood of emotion. I told my husband, ‘She’s going to be with us our whole lives.’ My husband said, ‘Liz, we have to take it one day at a time.’ I was reminded (that) she was my daughter the day before the diagnosis and the day after the diagnosis.”
Is it autism?
Autism is a neurodevelopmental disorder that impacts an individual throughout one’s life span. “It impacts social learning, social communication and aspects of cognitive development. Children with autism may also engage in repetitive behaviors and have sensory sensitivities,” explains Dr. Anne Inge, Ph.D., psychologist and clinical director of the Center for Autism Spectrum Disorders at Children’s National Hospital.
Dr. Crystal DeVito, Ph.D., a senior child and adolescent psychologist with The Center for Autism at Sheppard Pratt, explains, “The learning, thinking and problem-solving abilities of children with ASD can range from severely impaired to gifted. Some require substantial support to navigate the world; others operate relatively independently.”
The importance of early diagnosis of ASD
The experts agree that early assessment and intervention can help children achieve better outcomes.
Currently, autism is most frequently diagnosed around age 4, although it can be identified earlier. Researchers and clinicians are working toward earlier diagnosis to be able to offer interventions during ages 0 to 3, making use of this important developmental window of rapid growth.
“For kids who receive services later, it’s not that they can’t have positive outcomes; the outcomes tend to take a bit more work later on compared to in the younger years when the brain is more malleable and plastic,” says Dr. Katelyn Vertucci, Ph.D., a psychologist and clinical director of the Swank Autism Center at Nemours Children’s Health.
DeVito explains, “In the first years of life, neural circuits, which create the foundation for learning, grow exponentially. Neural connections are made when babies experience something. Connections become strengthened as the experience is repeated and learning occurs.”
For an autism assessment, parents should expect to meet over the course of a few days or weeks with a multidisciplinary team that includes child psychologists, speech-language pathologists, occupational therapists, child psychiatrists, nurse practitioners and behavior specialists who collaborate to provide accurate diagnoses.
Before the COVID-19 pandemic, most assessments occurred in person at the clinical center. Today, families and providers enjoy the option of virtual assessments, which can be easier for families to schedule.
Following the assessment, families will have a clearer picture of their children’s strengths and weaknesses and a plan for supporting them in achieving their potential.
“We try to tailor our treatment plan to each kid,” says Vertucci. “We request that they get in touch with their local school district to see if they are eligible for any resources in their community, such as a preschool classroom specially designed for them. We also recommend parent training. It’s crucially important that caregivers work hand in hand with therapists.”
Being awesome on the autism spectrum
An autism diagnosis can overwhelm parents. But experts and parents can work together to help recognize the distinctive gifts of children on the spectrum.
“I would say that autism is a difference in learning style and approach to the world. Children with autism have unique strengths,” Inge says.
“People with autism have contributed to our society,” Vertucci adds. “Kids with autism tend to have strong interests in things they love and know every single detail about these subjects.”
While that point might be true, for now, Elizabeth Chaillou enjoys the slower pace and joy in small moments that Maya brings to her family.
“She has taught us all to slow down and take life day by day and appreciate the small milestones,” says Chaillou. “When she hits her milestones, we all know that it’s harder for her to hit them, so it’s just that much greater. I have learned that a lot of parents have grief and insecurities, asking what did they do wrong? But I urge them to give up that guilt. I know in my heart that we did not cause this. We carried her skin to skin as a newborn. We loved her with our whole hearts. We knew that this was truly in God’s plans for us. She is the daughter we were meant to have.”
*Maya’s name has been changed to protect her identity per parent request.