Personal insight from an autism professional
My son, Sean, was 2 years old when we first noticed something wasn’t quite right.
He stopped pointing at things. He lost what little language he had been developing. Looking back, I realize his development hadn’t exactly been “neurotypical” up to that point. But my wife and I didn’t know that then.
We also didn’t know our lives were about to change. After an assessment, Sean was diagnosed with autism.
I wanted to help
No parents want to watch their children struggle. There’s a strong feeling, a voice in your head saying, “I need to do something about this now.”
So we acted. After thorough research, we enrolled Sean in applied behavior analysis (ABA) therapy and speech therapy at home. Then we enrolled him in the Lerner School for Autism. Now 11 years old, he has continued all of the above. We’ve witnessed regression and setbacks, but we’ve also seen a lot of progress in those nine years.
Sean’s diagnosis didn’t just change our family life; it changed my career. I was already working in psychology with children. But in autism care, I saw an opportunity to join something critical. So did my wife, who is now a board-certified behavior analyst and assistant principal of a school serving children with special needs.
Parents want answers. I know, because I’m one of them. Through my own research and clinical work, I want to help provide those answers — about biological causes and about the treatment paths that work best for people.
Some of my work won’t be finished in time to help Sean while he’s a child. But I hope it will help other children and other families just like ours.
“When I hear a story about a child who has suddenly lost the ability to speak, the heartbreak is not lost on me.”
We’ve learned patience
I remember the first time Sean caused a scene at a grocery store. Parents know the scenario: You can feel other shoppers staring at you.
Over time, you learn not to let it bother you. You also learn that punishment is your first urge, but it doesn’t work.
Instead, we deal with challenging behavior — from tantrums to aggression — by teaching better behavior and reinforcing it with rewards.
Why? Because often the source of challenging behavior is frustration. Sean is low-functioning. Early in his therapy, he started to gain language, and then regressed again. Imagine how frustrating it must be to have needs and not know how to tell somebody about them.
Now, he uses a speech-generating device. But getting him to use that device to communicate what he needs, when he needs it, has taken patience and practice.
We focus on the small victories, too. For us, that’s long family walks. It’s the way Sean’s younger sister, Emily, patiently looks after him. It’s recognizing the skills Sean has now, at age 11, that he did not have even one or two years ago.
The small victories will differ for your family, but try to savor them.
We’ve focused on what works
As a researcher, I believe in evidence. That’s as true for my child’s care as it is for any paper I publish.
That’s why we focus on ABA, speech therapy, occupational therapy and other proven techniques with Sean. They take time, effort and practice, but all the effort is worthwhile when you start to see improvements.
I’ve seen that improvement in how Sean uses his speech-generating device to communicate, and in the way he now understands others’ language. I’ve also seen it in his ability to follow instructions, which improved so much when we started simple practices based on the lessons he taught us. We use shorter sentences. We break large tasks up into smaller tasks. We use visual aids as much as possible in place of verbal language.
These tactics matter. But above all else, I think I’ve learned empathy and compassion from Sean. When a parent sits in front of me in tears, I understand. When I hear a story about a child who has suddenly lost the ability to speak, the heartbreak is not lost on me.
But know this: After a diagnosis, you can adapt. Your life will change. Some of that change will be negative — but you can also work to ensure a lot of it is positive. Ultimately, you and your child can lead fulfilling, meaningful lives.
Source: The Cleveland Clinic