Pirates and princesses. Teddy bear picnics and magic carpet rides. If you’ve ever observed a child in the midst of play, you’ve seen the world of wonder and possibility that lives inside a child’s mind.
For children diagnosed with an autism spectrum disorder, the potential that exists in their minds is no less fantastic. Rather, it’s locked away behind a myriad of complex medical and behavioral issues.
“Children are imaginative learners and thinkers,” says Melissa Twarek, BCBA, program manager of the ProMedica Toledo Children’s Hospital Autism Early Learning Program. “Many of them have the capacity to tap into wonderful reserves of creativity and knowledge. However, children with autism often experience roadblocks to sharing those thoughts with the world. The key to understanding autism is knowing how to assess a child’s current skills in order to teach the missing pieces thus unlocking their true potential.”
Autism was first identified in the 1940s, but what we understand about the disorder 70 years later is drastically different. For Toledoans Bob and Suzy Tyner, the process of understanding their son’s autism began more than 50 years ago.
“Back then, they just gave children a diagnosis of infantile schizophrenia or emotionally disturbed,” recalls Mr. Tyner. “Sometime later, in the 1960s, we read a brief paragraph about autism in a book and realized that he had some of the symptoms.”
The Tyners remember visiting healthcare professionals after reading that article and explaining why they believed their son was autistic.
“Things have progressed monumentally since the 1950s and 1960s,” says Mr. Tyner, whose family founded The Great Lakes Center for Autism in 2004 to help local residents who are diagnosed with autism. Today, we recognize autism on a spectrum that encompasses individuals with mild forms of the disorder, such as Asperger’s syndrome, to those with more severe symptoms.
Children with autism often have speech and language difficulties, and sometimes they are unable to speak at all. They also find it difficult to recognize social cues, which can result in inappropriate or disruptive behaviors and difficulties making friends.
While this may help us understand what autism is in a clinical sense, it doesn’t fully explain what autism feels like. Because autism is a neurological brain disorder that influences a person’s sensory functions and ability to communicate, elements of everyday life can be exaggerated, frustrating or confusing, explains Twarek.
For example, think back to the last time you were trying to sleep, and a mysterious ticking kept you from drifting off. Even though this sound isn’t necessarily loud, it is distracting and keeps you from falling asleep. Furthermore, imagine if you were unable to find the words to express what was bothering you. Although this is a simplified example, it helps us begin to understand how people with autism experience the world.
Autism is usually diagnosed when parents notice their child may be developing differently than other children.
“It’s critical that parents learn the signs of autism and understand the typical developmental milestones children should be reaching at different ages,” says Linell Weinberg, executive director of the Autism Society of Northwest Ohio.
Because autism typically appears during a child’s first three years of life, Ms. Weinberg advises parents of babies and toddlers to watch for certain “red flags” that may indicate their child is at risk. Parents who observe any of the following warning signs should have their child evaluated as soon as possible:
• No big smiles or other warm expressions by 6 months
• No back and forth sharing of sounds, smiles or other facial expressions by 9 months
• No back and forth gestures or babbling by 12 months
• No words by 16 months
• No two-word meaningful phrases (without imitating) by 24 months
• Loss of speech or social skills at any age
For local residents Joe and Annette Napoli, a diagnosis of autism for their son Daniel came after struggling for two years to understand why he seemed distant and developmentally behind.
“Danny wasn’t hearing very well, and we just got a lot of blank stares from him,” Annette Napoli says. “Finally, when he was 2 years old, we got a hearing test for him and found out he was having muffled hearing.”
After the family realized what was causing Danny’s hearing problems and took steps to help resolve those issues, they began taking Danny to a speech therapist. It was the therapist who picked up on some behavioral problems and noticed that Danny didn’t make a lot of eye contact. Through his parents’ persistence and several more specialist visits, Danny was eventually diagnosed with autism.
“Annette’s ‘mother’s instinct’ really kept her going for a diagnosis,” recalls Mr. Napoli. Danny wasn’t hitting his milestones, and she knew it wasn’t just a case of him being a late bloomer.”
“As a parent, you are your child’s expert. That’s why it’s important for parents who suspect something just isn’t right to educate themselves, connect with experts in their community and speak frankly with their child’s physician.”
After receiving a diagnosis, most parents immediately begin thinking about treatment. However, because each individual experiences autism differently, there is no clear-cut course of action that works for everyone.
“We’re conditioned to expect a defined treatment for our children’s illnesses and ailments,” says Twarek. “When it comes to autism disorders though, there’s no one-size-fits-all program that can be applied across the board. Instead, an effective program should be individualized, researched-based and data-driven. This comprehensive undertaking involves the entire family and a team of health care professionals.”
In fact, families often discover that finding the right treatment is a challenging process and that success is comprised of a unique combination of treatments, such as applied behavior analysis and many forms of art therapy. Additionally, Ms. Weinberg notes that while parents feel they are
in a race against time to get the appropriate diagnosis for their children, and subsequently get them into early intervention programs, life-long services are also important to a person with autism. The Napoli family agrees.
“What we’ve learned is that at every step of the way there are things you can do to help your child, and there are people who are willing to share their time and expertise,” says Mr. Napoli.
Autism is a life-long condition that affects not only the diagnosed individual but his or her entire family. In fact, families frequently deal with an array of socio-economic challenges, such as financial difficulties, family issues and social isolation.
“Autism touches every member of the family,” says Twarek. “Parents experience feelings of worry and guilt. Siblings cope with the social implications of living with a sister or brother who is different. It’s a tough road. But, it can be a rewarding one as well.”
Northwest Ohioans Melissa Voetsch and husband Gary Sensenstein’s son, Cole, was diagnosed at 3 with autism and through intensive early intervention improved to Asperger’s syndrome. They think their journey with autism isn’t solely about teaching Cole how to live with the disorder – it’s about their entire family learning how to live from Cole.
“I’m so lucky to be Cole’s mom. I’ve grown so much because of him,” says Ms. Voetsch. “When you have a child diagnosed with autism, you have to realize that some things will be different than you first thought. But, you’ll learn to appreciate every breath and your child will teach you about bravery. You’ll be humbled by what they teach you.”
Self-described as Cole’s “quarterbacks,” Ms. Voetsch and Mr. Sensenstein believe that teaching their son effective life management skills is key to helping him build the foundation for his future.
“Despite his challenges, we’re trying to teach Cole there are no limits to what he can accomplish,” she adds. “Our job is to give him the skills that can help him adapt to a world that can easily overwhelm him at times.”
In the meantime, they take life day by day –one step at a time –appreciating and loving their son for who he is and what he brings to them individually and as a family.
“You just have to believe your prayers for your child will be answered in good time. You have to have faith,” Ms. Voetsch relays. “You have to wait and be patient, but in the process you get to witness and experience all the beauty that this wonderful and unique child brings to your life and to the world.”