Autism Awareness Month: Diagnosis does not mean disability

Published: April 26, 2017 | Updated: April 22, 2021

Disabled no more. That was the recurring stanza of the poem my son, Glen, authored and then read aloud during his graduation ceremony from the Kentucky Governor’s School for the Arts creative writing program a few years ago.

It certainly seems true. A cum laude graduate from Lindsey Wilson College who works as a journalist isn’t the same kid who hid under his desk or melted down in the school cafeteria during his elementary school years.

Glen has Asperger syndrome, which is on the autism spectrum. He was diagnosed while in kindergarten — the first child in his small school system to be identified with it.

At the time I remember thinking about his future and wondering if independent living was possible. During his early life, if Glen was comfortable in one restaurant, taking him to another was cause for a total meltdown. Wearing a different color, different shoes or eating different foods had the potential for disaster. Eye contact, personal space, handwriting, even going to school seemed monumental.

Since those early days, he is working at a job he loves and has started a group for young adults with autism. He has friends and is actively involved in the community. I see a great future for him — and grandchildren in mine.

Together, we have tackled autism, and he is disabled no more. Here are some things we learned along the way:

• A child with autism is still a child and needs boundaries. Don’t be afraid to set them and give consequences for actions.
• Getting a diagnosis is hard but worth it. It can be a long process, but proper diagnosis means proper treatment. I worked with a pediatrician who was skilled in the diagnosis of special needs.
• Don’t worry about labels. Worry about the child.
• It’s OK to grieve. Dreams die hard after all. But move on and make new dreams.
• Use the tools available to you. Occupational therapy and physical therapy strengthened muscles and helped with spatial and texture issues. Speech therapy helped with eye contact and the proper way to have a conversation. A counselor guided us through the middle school years. A social club for teens with autism gave him a place where he wasn’t teased and he could be himself.
• You are your child’s best advocate. Don’t give up on what you know is important for your child. If you aren’t receiving the right services or your child’s school placement isn’t the best, say so.

The most important thing my family learned: Don’t give up hope. Your child has amazing potential. Once you begin removing barriers, miracles happen.