My nephew, Felix, is five years old and has both ADHD and Autism. To give you a glimpse into his life, I want to tell you some stories about him. Sometimes his life is intriguing, sometimes it’s overwhelming, and sometimes it’s downright hilarious. Hopefully these stories will give you an idea of what it’s like to have a child with co-occurring disorders.
And if you have a child with co-occurring disorders yourself, hopefully this will help you remember that you are not alone and neither is your child.
A few weeks ago, Felix was at an Easter gathering with family. While there, one of his uncles taught him how to play the “Hotter/Colder” game. He hid an Easter egg somewhere in the house and then told Felix to go find it.
As Felix wandered through the house, getting closer and closer to the hidden egg, his uncle said, “You’re getting warm. You’re getting warmer. You’re getting hot. You’re getting really, really hot.”
Felix finally stopped walking and threw his hands up in exasperation. “Well, then I’ll just take my jacket off!”
I have never retold a story so many times in my life. He is hilarious and adorable and I love that story. Every unique piece of him is a blessing in our lives.
That’s what Autism looks like. Plays on words don’t make sense. Irony and sarcasm don’t make sense. Social interactions don’t make sense.
One day, about a year ago, Felix’s mom was talking on the phone as they pulled into the parking lot of their apartment complex. After parking, she got out and opened the back passenger side door to get Felix’s little sister out of her car seat.
Instead of waiting for his turn to be let out, though, Felix unbuckled himself, flung his door open, and jumped out of the car before his mom could stop him. She screamed in a panic as he darted away from her. I know because I was the one on the other end of the phone.
She caught him thirty seconds or so later, but it scared her. It scared me through the phone and it probably scared everyone within hearing distance of the apartment complex.
He could’ve been hit by a car. He could’ve been grabbed by a stranger while his mother’s arms were full. He could’ve run and run and run until he finally realized his mom wasn’t behind him anymore.
The only person who wasn’t scared of all those possibilities was Felix. That’s ADHD. Impulsiveness makes him act without thinking.
Shortly after Felix was diagnosed, he came to visit my house one day with his mom and sister. He spent the day playing with my daughter who is the same age as him and has been his best friend since birth. Most of the time, they act more like brother and sister than they do cousins.
A lot of the friction between the two of them, though, has to do with the fact that Felix gets easily overwhelmed and overstimulated, while my daughter is really sensitive and feels hurt when he needs time to himself.
That particular day, he had been at our house longer than he was able to deal with. There was just too much noise and chaos swarming around him. Way too much stimulation. Right around dinner time, he finally lost it. He started screaming and crying, defying anything his mom or I asked of him, and hiding under furniture to escape everyone.
Remember this was RIGHT after he was diagnosed, though. At that point, I still had no idea what he was going through. I wasn’t even sure they’d correctly diagnosed him because he was still so young and “tons of kids that age get overwhelmed.”
Looking back on it, I was being narrow-minded. His meltdown that day was very clearly caused by his disorders, which are, in fact, very valid.
I remember being kind of exasperated with him at the time – not really sure why he was fighting us so much. I thought for sure my sister would pack up her stuff and leave, telling me he’d had enough.
But what she did surprised me. She walked over to him where he was hiding in the corner behind a bar stool and pulled the stool away from him. When he tried to run away (screeching at the top of his lungs again), she caught him in a bear hug. She pulled him tight to her chest and started murmuring sweet words of encouragement to him.
He fought her, kicked his feet, tried to claw his way free, and screamed. Boy, did he scream. But she never let go.
She told him how kind he was and how much she loved him. She told him that he was just overwhelmed. She told him it was okay to be by himself for a little while. She told him we could all be quiet for a minute so he could calm down.
And, eventually, he calmed down. He stopped fighting her and settled into her arms. He snuggled into her chest as I stood beside them, staring in disbelief.
It was the strangest thing I’d ever seen (up to that point). Once he’d calmed down and could return to playing–by himself this time–I asked her about what she did for him.
She said, “That’s what we’ve been learning about in therapy. He doesn’t need to be corrected or chastised or forced into obedience. He needs to be given a moment to calm down, and he needs someone to reassure him that he’s okay. He needs physical pressure around him to feel safe. He needs to be taken care of like someone who has a brain that works differently.”
My sister is younger than me and had Felix when she was barely eighteen… but I was so in awe of her in that moment. I’m always in awe of the way she parents. She’s an amazing mom. I ask her for advice every single day. She takes care of Felix and loves him in the way he needs. Therapy has honestly worked wonders for their family.
That’s what it looks like to have co-occurring disorders. That’s what it looks like to have Combined Type ADHD and Autism and Sensory Processing Disorder (which is often paired with Autism).
The ADHD causes the body to be in constant motion, takes away rational reasoning, and hinders the ability to concentrate. The Autism removes social cues and the ability to maintain eye contact, which makes it hard to maintain functional friendships. The Sensory Processing Disorder (like I said, often couple with Autism) makes it nearly impossible to process external stimulation like sounds, lights, or touches.
Add all those things together and you’ve got a kid who really needs to be cared for in a very specific way.
Co-occurring disorders are hard, especially when both (or all) of them are extremely overwhelming to the child. It causes friction within a home and demands almost constant vigilance and consistency. It’s really, really, really hard.
But, man, is it worth it. ADHD/Autism kids are some of the most precious jewels God has ever given us. Spend a day with one of them and you’ll see the world with so much awe and wonder and curiosity that you’ll wish you could hold on to it every day.
You can do it, parents! If you’re going through situations like these right now, reach out to this community. There are others here who would like to talk to you.
Take the time to connect with one another.