Is It Autism? The Next Steps
How can early diagnosis of ASD and access to care help kids on the spectrum achieve their potential?
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. Chaillou 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?
Like Chaillou, many parents of young children may sense something is “off” with their developing child. But how can they tell whether the differences they notice are within the broad category of normal childhood development or something else? The first step is understanding what autism spectrum disorder (ASD) is and is not.
“Autism is a neurodevelopmental disorder that affects a person throughout the entire 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., a psychologist and the clinical director of the Center for Autism Spectrum Disorders at Children’s National Hospital.
“When you’ve met one person with autism, you’ve met one person with autism” is a familiar saying among those in the autism community. The disorder manifests very differently in children with ASD.
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, while others operate relatively independently.”
The importance of early diagnosis of ASD
The experts interviewed for this story agree that early assessment and intervention can help children achieve better outcomes.
“It’s important to identify autism as early as you can because we have very specialized approaches for intervening,” Inge says. “Intervention is what has been shown to impact outcomes including language and cognitive ability as well as risks for comorbidities.”
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 Kristina Vertucci, Ph.D., a psychologist and clinical director of the Swank Autism Center at Nemours Children’s Hospital.
This concept of neuroplasticity is an important component of the success of early intervention.
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. If experiences don’t occur or aren’t repeated, connections are lost.”
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 work together 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 to do virtual assessments, which can be easier for families to schedule and allow children to be unmasked in their own environments where they are comfortable.
“At Sheppard Pratt’s Center for Autism, families are supported throughout the entire assessment process by a compassionate and dedicated team of social workers,” says DeVito. “We understand that a diagnosis of autism spectrum disorder will likely be life changing for parents. But we also hope that the diagnosis can be a starting point for education, increased understanding and motivation to work with professionals to develop plans for interventions to support the child’s development and the family’s adjustment.”
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 individual 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 so that a child’s progress is reinforced at home.”
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. It is a difference in learning style and approach to the world. Children with autism have unique strengths! That’s part of the work we do—celebrating their strengths while building on areas that are weaker,” Inge says.
“People with autism have really contributed to our society,” Vertucci adds. “Kids with autism tend to have strong interests in things they love and know every single detail about those subjects. For example, some of the most brilliant scientists in history, like Albert Einstein, are thought to have been on the spectrum.”
While that point might be true, for now, Elizabeth Chaillou is simply enjoying 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. I did everything for Maya that I did for my other kids. 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, and I’m just so glad.”
*Maya’s name has been changed to protect her identity per parent request.