There’s Nothing ‘High Functioning’ About It

My son Daniel has been challenging since the beginning. He is strong-willed with a big personality and has even bigger feelings.

He cried all the time as a baby. I attributed his big emotions back then to him being in pain. He had a cast on his leg the first few months of his life due to his club foot. It never occurred to me that something else was going on.

I assumed because he talked and walked before his siblings that he was a normal kid. I wanted and needed him to be neurotypical and to do things on his own. Daniel is in the middle of his older brother and younger sister, but he reached milestones before either of them did.

His siblings were born with a rare genetic mutation called Weiss-Kruzska Syndrome and have developmental delays. They were both later diagnosed with Autism. Although Daniel also has some physical challenges and delays, he’s always been more independent.

Because he appeared to be neurotypical I always treated him differently. I disciplined him differently and expected more out of him. He was just a toddler, but I demanded a lot from him.

He never listened and following directions was difficult. He got into trouble a lot. Disciplining was always hard with him. I constantly changed it up to help him understand. Sitting in timeout, sending him to his room, taking toys away, turning off the television, ignoring, redirecting, yelling, whispering, I tried everything.

Naturally, I thought it was bad behavior.

When I went to counseling for postpartum depression, I learned Daniel and I had different personality types, which is probably why we weren’t compatible. I didn’t understand how I didn’t “get along” with my baby. Is that even a thing? That seemed so silly to me. He was only an infant, but we already had so many problems. It seemed so out of place.

Sometimes I wondered if Daniel was on the spectrum. When he was 1 and 2 years old he had constant meltdowns every day. I knew those were more than just temper tantrums. Sometimes they’d last for 45 minutes.

Both his sibling’s Autism comes from their genetic mutation, so my mind would quickly change since Daniel didn’t share that with them.

As he got older I wondered even more as he possessed new behaviors. He couldn’t share his toys or play with his siblings. He’d get frustrated easily and didn’t like asking for help. He was impulsive and didn’t think before acting or talking.

I wondered why he never listened when we repeatedly told him not to throw things, run in the house, be careful with his sister, to not touch his brother, or overstuff his mouth with food. We’ve been saying the same things over and over for years. He really couldn’t comprehend what we were saying.

We realized he needed to be evaluated. Something needed to change. We had been trying to help him for years to no avail. For the safety of his siblings, he needed that extra support.

Daniel was diagnosed with Autism at the end of last year at 4 years old. A completely different part of the spectrum than his siblings. The more higher functioning side.

Except there’s nothing high functioning about it. Just because he can talk. Just because he can eat food. Just because he can walk, he was considered more functioning.

The guilt started to set in. I was too hard on him. He was struggling this entire time and I overlooked his toil. Sometimes I feel like I’m taking away his childhood because I needed him to do things on his own, to be independent. I treated him like an adult and expected too much from him.

The interesting thing is, is that my oldest son was diagnosed with Autism 2.5 years prior to Daniel. He’s considered more severe since he’s non-verbal and isn’t quite as independent.

Anytime I read something about severe Autism, I would immediately think of Daniel and his behaviors even though he wasn’t even diagnosed. The image just fit him better than my oldest. That’s the thing with labels and Autism. It’s a spectrum for a reason.

“Severe”, “more”, “functioning” can mean many different things for different people.

This diagnosis explains so much about Daniel’s abilities and the way he thinks. It’s going to help give him the support he needs. He truly isn’t trying to condone bad behavior, he just needs extra help and love.

I’m trying to remember that he has just as many struggles as his siblings, they’re just different struggles.

He learns differently and it’s going to take extra patience for us to parent him. I hope this helps him get the support he needs to live a full life.

Written by, Kate Anderson

I’m Kate Anderson. I live in Colorado with my husband and three kids. You can follow my blog at www.thisspecialjourney.com or find me on Facebook at www.facebook.com/thisspecialjourney or Instagram @thisspecialjourney1  

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