Before an Autism Diagnosis: What Concerned Parents Need to Know

Parents are so tuned into their children that long before an autism diagnosis, they know something’s not quite right. Two experts from Roots Autism Solutions share their insight.

As a parent, you are often told that you know your child best. And it’s true. Even if you sometimes feel confused, you have been with your child from their first breath — and that’s precisely why your insight is so valuable. “Every child develops on their own individual schedule, but when you sense something is not right, it’s important to listen to your instincts,” says Jillian Burgard, CEO and Co-founder of Roots Autism Solutions and Therapeutic Academy in Buffalo Grove and Lake in the Hills.

If you suspect your child isn’t developing at the typical rate, it’s important to start asking questions, as difficult as that may be. “It’s sometimes the case of you don’t want to know — but you do actually want to know,” explains Burgard.

Maybe your young child isn’t responding to you or engaging with you during play, Or, maybe they aren’t babbling, cooing or speaking as you’d expect them to do. It’s tempting to simply wait and see if they are just slower to develop these milestones, but there’s no harm in getting an expert opinion, agrees Board Certified Behavior Analyst Jen Link, who co-founded Roots with Burgard.

Follow your own instincts, even if you think you could be wrong. It’s better to know than spend time and energy wondering if your child is developing appropriately or is just taking a bit longer to reach a specific milestone — or if there is something more going on, both experts say.

What is surprising to a lot of parents are the statistics behind the rate of developmental delays and even autism spectrum disorder. Across all socioeconomic and cultural groups, about 1 in 44 children has been identified with autism spectrum disorder, according to the Centers for Disease Control and Prevention. Autism is four times more common among boys than girls. The CDC also reports that 1 in 6 children is diagnosed with a developmental disability.

If you have concerns about your child, here are some suggestions from Burgard and Link about what to do.

Make connections

Without getting overly anxious or worried, reach out to your child’s pediatrician, suggests Link. “Talk to the pediatrician and start asking questions. That’s a really good place to start,” she says. “There’s often a hesitancy out there because no one wants a parent to overly worry, but if parents aren’t armed with knowledge, they might not be aware of important information about their child.”

When you visit with your child’s pediatrician, it’s likely they will use a tool called the Ages & Stages Questionnaire to assess your child’s skills.

You can also refer to the CDC’s list of developmental milestones, which begin as early as 2 months. There’s even a milestone tracker app that you can use to keep track of your child’s development. Be sure to ask your pediatrician any questions you might have, and if they assure you all is fine, it’s good that you started the conversation. Keep your questions coming and remember, you know your child best.

“Start by having a conversation and that will be helpful for you to figure out where to go next,” Burgard says. Children from birth to age 3 who have a 30% delay in reaching milestones are eligible for Early Intervention services. When children reach the age of 3, parents can reach out to their local school district for services. “If the child qualifies, the services are free,” she adds.

What if it’s an autism diagnosis?

If your child’s pediatrician or if the Early Intervention team suspects your child has autism spectrum disorder, you will receive a recommendation for a neuropsychological evaluation. Be aware that the waiting list for this service can be lengthy.

“If there is a waiting list, you can and should still access services for your child,” Burgard says. “Don’t wait because every month matters and you want the best outcome possible for your child.”

The youngest children at Roots are typically about 18 months old. “At this age, we engage the child in a lot of play. We get down on the floor and follow their lead,” Link says. From 18 to 24 months, children who are developing typically are learning to communicate, but if that’s not happening, the specialists at Roots use applied behavioral analysis (ABA) therapy to help children find ways to communicate so they can better function.

“We always want it to be a positive experience for children, so we approach each day in an age-appropriate way for the child,” Link says. “So, even an 18-month-old will have opportunities for rests and snacks.”

It’s important to choose the right ABA therapy provider and work with them to address your concerns. “We focus on positive progress and working to meet your goals for your child,” says Burgard. “When parents hear their child has autism, they are overcome with questions and concerns. We help families through that process and focus on helping their child have the best possible outcome and the strongest future.”

As a leadership team, Link and Burgard bring a unique mix of expertise to Roots. Each has experience in the public school system, advocating for children with developmental delays. “That combination of ABA therapy and rich background in education is a win-win because it means we can provide an environment where children have access to great therapy with an educational component and that blends together to give kids the best success moving forward,” Link explains.

“Not all therapy providers have this combined experience,” Burgard says. “In an individualized way, we help kids build school readiness skills while still addressing their goals and ages and stages milestones.”

Learn more about Roots Autism Solutions and Therapeutic Academy’s unique offerings at two locations in Lake in the Hills and Buffalo Grove. Visit rootsautismsolutions.com.

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