One day, Terri Matthew’s then-2-year-old son Jaden began to place his toys in a straight line. Then he did it again. And again. Soon it became a pattern.
“He would line up all types of toys,” Matthews recalls. Toy boats, toy cars and teddy bears would line Jaden’s bedroom floor. At the time, his parents did not know that this perplexing behavior could be a sign of autism. It took more red flags — such as extreme agitation that would sometimes result in his throwing his toys at his mother — before Matthews started on her journey toward a diagnosis for Jaden.
The Centers for Disease Control and Prevention (CDC) states that one in 59 kids has an autism spectrum disorder (ASD). As more parents face the possibility of having a child on the spectrum, experts stress the importance of not wasting time in obtaining a diagnosis and beginning treatment. According to a report published by the American Academy of Pediatrics in 2015, the second year of life sees critical development for children with autism. It is a time of tremendous brain growth when the “atypical connectivity” associated with the disorder first emerges; it is also a period of “substantial neural plasticity providing greater potential to alter [autism’s] developmental course.”
The Autism Science Foundation recommends that parents understand as much as they can about autism, including how there is no “one” face of the disorder — it looks different in each child. The spectrum ranges from very low-functioning to very high functioning, with differing levels of difficulty and challenges in communication and intellectual development.
In Lancaster, the Schreiber Center for Pediatric Development (formerly known as the Schreiber Pediatric Rehab Center) serves more than 4,000 children each year. The center provides several services, including intensive support for children with autism.
“I think what actions you would take depend on a number of factors, including the age of the child and what level they are on the spectrum,” says Jennifer Bachmann, family support coordinator at Schreiber.
While parents are quick to focus most of their attention on their child and the diagnosis, it is imperative that they focus on their own health, particularly, their emotional health.
“My advice is get connected and get informed. Do not underestimate the emotional toll that this diagnosis can cause. Find support for yourself,” says Kirsten Yurich, CEO of Vista, an organization founded in 2002 that provides an array of services for children and young adults with ASD, including early intervention programs to help those at the time of diagnosis.
Yurich states that parents need to heed the same safety advice that those on airplanes receive — to place the mask on themselves before helping others. She also advises parents to be cautious. “There are many unverified resources out there and parents can easily fall prey. Autism is treatable, so be sure to find providers who deliver quality treatment using evidenced-based and Applied Behavior Analysis interventions.”
Matthews, whose son is now a preteen, shares that her son’s diagnosis challenged her family. It challenged her relationship with her older children, and it challenged her marriage to Jaden’s father. Now remarried, Matthews is an advocate for parents who are baffled and intimidated by the diagnoses process. She created the nonprofit, Jaden’s Voice, and an online talk show, “On the Spectrum,” to serve as guides for families learning to cope with raising a child with autism. She says that she wishes she had found these types of resources when she first found out her son had the disorder.
Diagnosis and early intervention
To help concerned parents determine if their child might have autism, Yurich recommends the online resource M-CHAT-R/F (Modified Checklist for Autism in Toddlers, Revised, with Follow-Up, available at autismspeaks.org). The free tool asks parents 20 questions; if the results indicate a risk of autism, parents should make an appointment with their child’s pediatrician to review the areas of concern. The tool, which was revised in August 2018, is valid for children 16-30 months old.
Once a child’s doctor suspects autism, she can then refer the child to a specialist for a formal diagnosis. That is necessary to secure treatments, which can include behavior and communication therapies — including speech therapy, educational therapies, family therapies and possibly medications. Depending upon where a child falls within the spectrum, he may qualify for state-funded early intervention. Pennsylvania’s Early Intervention program provides an Individualized Family Service Plan (IFSP) to children ages 0-3 with autism (and other developmental delays or disabilities), and an Individualized Education Plan (IEP) for children from ages 3 to the entrance to first grade. The program is free.
Intervention may be done within the elementary school that falls in the child’s district, or at an IU facility. It can also occur at a school specializing in autism. Vista has an early intervention program that provides ABA (applied behavioral analysis) therapy to children as young as 12 months old. Schreiber also has early intervention programs for infants and toddlers.
Sometimes if they have the luxury of a choice between a dedicated school or program and a program within a traditional school setting, parents opt for the latter. Matthews said it was important for her to have her son “mainstreamed” into a school with typically developing students.
“It is important for me to help him become an independent member of society,” Matthews says, noting that the world is diverse and teaching her son how to interact with others has been an ongoing part of his growth following his diagnosis. However, his academic experience has not been without its challenges. Some other students have not been sensitive to his abilities and have singled him out and bullied him, although she says such occurrences are rare.
Meanwhile, Schreiber’s S.T.A.R.S. Preschool for children ages 3-5 includes “reverse mainstreaming,” meaning that its program, once designed exclusively for children with special needs, including autism, now enrolls typically developing preschoolers as well. The inclusionary nature of the program helps young children on the spectrum work on relating to their typical peers, and vice-versa.
A diagnosis of autism rarely comes out of the blue, but that doesn’t mean it isn’t terrifying. Once fears are confirmed, parents can feel overwhelmed with uncertainty about their child’s future and their own ability to do what’s right by her. The Interactive Autism Network stresses that as parents learn more about ASD and where their child falls on the spectrum, they will be able to make careful, confident decisions that will serve their child well.