Listening to Autism

One mom’s struggle to get the help she needs for her autistic son.

The Stadler family of Oviedo, photographed by Virginia Bogert Photography. L to R: Lena, Ed, Fran, Jack and Daniel Stadler

The Stadler family of Oviedo, photographed by Virginia Bogert Photography. L to R: Lena, Ed, Fran, Jack and Daniel Stadler

“Is autism good or bad?” My son Jack was 9 years old at the time he posed this question to me. I hesitated while I searched my mind for the best way to answer his question — it wasn’t an easy answer.

After all, in Jack’s world, things are good or bad, up or down, friend or foe, and nothing in between. He also has a very literal understanding of language, so I had to choose my words carefully. My son has Asperger’s syndrome, or high-functioning autism. He was aware enough to recognize that he was different from other children. We had just told him that he has an autism spectrum disorder (ASD). And now he wanted to know if that was good or bad. I didn’t want my son to think he was bad. But I couldn’t say autism was good, either.

Early Intervention is Key
Some traits of Asperger’s syndrome could be considered good, including an almost photographic memory, the ability to retain vast amounts of detailed information on certain topics. But certainly there were plenty of bad traits I could list: the tantrums, the struggle to communicate, obsessive-compulsive behaviors, repetitive language, difficulties in social situations and difficulty sleeping. However, Jack is a different child today than when he was diagnosed. Early intervention was the key.

By the time Jack was 18 months old, we knew something wasn’t right. He was our second child and suffered compared with an older brother who was textbook in every way regarding early childhood milestones. It wasn’t that Jack wasn’t talking at the age children typically begin to put words together. Jack wasn’t communicating. He wasn’t gesturing or making back-and-forth exchanges of any kind. But God placed me in a circle of friends where three of my closest confidants were a pediatric occupational therapist (OT), another OT specializing in traumatic brain injury and a pediatric speech pathologist specializing in children with ASD. I turned to them, and they set us on a path that has made all the difference in the life of a special needs child.

Our Journey Through Treatment
We started at The Howard Phillips Center for Children and Families. There we tapped into The Developmental Center for Infants and Children/Early Steps. This is an early intervention program that sees children up to age 3 who have (or who are at risk for) developmental delays or disabilities. At the Developmental Center, Jack was evaluated by a team of experts that included a developmental pediatrician, psychologists, speech and language pathologists, audiologists, and occupational and physical therapists. They prescribed a combination of occupational, speech and behavior therapies, which filled four days of every week for the next year and a half.

At the age of 3, Jack was no longer eligible for services through the Early Steps program, so he transitioned over to the pre-K program for exceptional student education (ESE) in Seminole County Public Schools. Here he was able to continue to receive speech and language and occupational therapy services through the school system. Because Jack was high functioning, we enrolled him in a typical preschool as well as the ESE pre-K.

Forget the Label
This is the point at which many parents struggle with the label. I know I did. Every parent fears something in his or her child’s “permanent record,” a label that may follow the child for the rest of his or her life. Perhaps it’s denial or that deep-rooted fear that we somehow failed as parents. However, I can’t emphasize enough — don’t be afraid of the label! The label can be your friend. The sooner a child receives therapy, the quicker and larger the gains can be. A recent study in The Journal of Child Psychology and Psychiatry found that children diagnosed with autism early in childhood reach “optimal outcomes” with levels of function similar to their typical peers. An accurate diagnosis will allow your child to receive the proper therapies that will target his or her special needs, as well as the necessary accommodations in the classroom, providing a pathway to success in school and life.

Today, Jack is in sixth grade. He’s fully mainstreamed, in typical classes at his middle school, but still receives needed services and accommodations in the classroom. His favorite classes are band and physical education, and he’s earned straight A’s in all subjects. The transition to middle school has not been without adversity, but he meets each challenge as it arises.

After pondering for a moment, I answered Jack’s question, “Is autism good or bad?” I explained to him that autism isn’t good or bad. It’s just different. We all have something with which we struggle. But the one thing we all have in common, regardless of our abilities, is our feelings. If we can’t have compassion for a special needs child who experiences these emotions, who will feel compassion for us? How we, as a society, treat the most vulnerable of our population speaks volumes about who we are. Autism speaks. Are we listening?

Autism Is an Epidemic
According to the latest CDC numbers, 1 in 88 children is diagnosed with autism today (1 in 54 boys). These numbers represent a 78 percent increase in autism over the previous five years. This is stunning. If your family isn’t directly touched by autism, the odds are you know a family that is.

APRIL: Autism Awareness Month
April is Autism Awareness Month, and April 2 is Worldwide Autism Awareness Day. Autism Speaks, the world’s leading autism science and advocacy organization, is encouraging everyone to LIGHT UP BLUE to shine a light on autism. Iconic landmarks around the world will light up blue to help raise awareness (lightitupblue.org/Markslist/home.do).
What you can do:
• Change your porch light to blue.
• Wear blue on April 2 to help raise awareness.
• Join the Autism Society of Greater Orlando’s Annual Walk and Family Fun Day on May 25 at the Orange County Convention Center (www.asgo.org/walk/walk_13). 100 percent of the proceeds from this event will stay in the Central Florida area.
• Join the annual Walk Now for Autism Speaks, November 9 at Cranes Roost Park. Visit the website to find out how you can support this cause (www.walknowforautismspeaks.org).

Where to Get Help
Most parents feel that something just isn’t right with their child during his or her first three years. What can you do? Here are some valuable websites and local programs:

The Autism Society of Florida serves as a centralized point for Florida autism information, with links to existing resources, including information from Florida’s Center for Autism and Related Disabilities (CARD), state agency websites and the Dan Marino Foundation.

Autism Speaks is an autism science and advocacy organization dedicated to funding research into the causes, prevention and treatments of, and a cure for, autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.

National Dissemination Center for Children With Disabilities provides information about the Department of Education’s Part C program, which provides early intervention services for infants and toddlers with disabilities.

Orange County Public Schools website provides information about support services, programs and resources for parents of children who have autism.

Seminole County Public Schools‘ exceptional student support services offer support services and a wealth of information for parents of children who have disabilities.

The Developmental Center for Infants and Children/Early Steps is an early intervention program that sees children from birth to age 3 who have or who are at risk for any kind of developmental delay or disability.

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