When are the Autistic Behaviors ‘Normal’?

This morning my autistic son crawled into bed with me at 1 AM. This is very, very rare for Cooper. One year ago, yes, he was a terrible sleeper. He would wake up a dozen times a night and start his days at 3 AM. But, not anymore. My kid is a sleeper now. My first thought…he is in pain.

As Cooper’s mom, I’ve learned that when behaviors change in a child on the spectrum, finding the reasons why can feel like trying to find a needle in a haystack. They can’t verbally tell you something hurts or feels weird. Nor can they always process it. In my son’s case, he shows us pain with increased or new behaviors. As we say in our world, ‘He’s dialing it up to a ten.’

I personally don’t believe that super intense behaviors are my son’s ‘normal.’ He is typically happy and jolly. He smiles. He laughs. You will encounter doctors and other medical professionals on this journey that will say to you…’that is normal for autism.’ They may be referring to self injuring, hitting, poop smearing, screaming, etc. It could be anything. I am no expert, but in our case, when my son is super behavioral he is in pain.

Changes in Behavior

So, when he climbed in my bed this morning, my PTSD kicked in full force. I immediately starting making mental notes. I noted he’s been waking up earlier for about a week now. He’s humming more. His hoarding and mouthing of objects has increased. Then I noted external changes. We had a party over the weekend. We had lots of people at the house. His sugar intake is up. His water intake is down. When was the last time he pooped? Has he had gluten or dairy? Are there changes at school? Is school noticing anything? Are their bruises on his body? Does he have a fever? Are we sticking to his routine?

I know this sounds crazy. Trust me. Even as I’m typing it I know people are going to think I’m neurotic.

I’m not.

I have a son with nonverbal autism who can’t communicate or process pain, stress or sadness. And, to make it even worse, my son had chronic ear infections for three years of his life and I didn’t even know. Talk about loading on the mommy guilt.

The Tough Years

In my defense I knew in my gut something was wrong and I was doing everything I could to figure out why my child was regressing right in front of my very eyes. Cooper was almost three. The autism diagnosis had just been slapped on his head. I read books and blogs and talked to other parents. Behaviors were normal. Not sleeping was normal. Strange noises were normal. Or, so I thought.

At the time Cooper wasn’t sleeping. And I don’t mean that in the cute, oh, my baby wakes up a few times a night, way. Cooper woke up a dozen times every single night. It seemed like every day his autistic behaviors were increasing. He was moaning, rocking, pacing, hitting and kicking. For periods he would stop sleeping all together. I’d call my pediatrician daily and tell her something was wrong. We’d go in for a visit and I’d mention Cooper’s constant runny nose. She’d note that he had no fever and that he was just exhibiting autistic behaviors. She’d say that his behaviors were normal for a child with autism.

I knew something was wrong with my son but I couldn’t get help. It was like no one in the medical profession would listen to me. Every month or so I’d be told that Cooper most likely had an ear infection and that antibiotics would clear it right up. Except, they never did. It was like he was immune to them.

Cooper’s behaviors peaked at age four. He completely withdrew. People started saying the term, ‘severely autistic.’ Which I very much struggled with at the time. But the real issue was I knew my kiddo was in pain and I couldn’t help him. I knew something wasn’t right.

My Child is in Pain

I remember thinking…This is so much more than ‘just autism.‘ He is in pain. I am a failure as a mother. I can’t help my child. No one in the medical world will listen to me.  All of those thoughts rushed through my head on repeat.

But, I never gave up. I just kept calling doctors and making appointments. And to be perfectly honest I didn’t always feel supported in these decisions. But, I did it anyways. I kept bringing my super, super challenging kid into clinics and telling our story. I got smarter too. I would speak to doctors first without Cooper. I’d show videos of Cooper in pain and exhibiting behaviors. I’d demand tests and x-rays. I’d quiz doctors on Autism. If they didn’t know the answers I’d find another one. I’d complain too. If something was wrong with the care that was being offered I told someone.

Thankfully, I eventually found an amazing pediatrician who referred us to an even better ear specialist.

By that time Cooper had four sets of ear tubes placed and an impaction (for constipation) surgery. Each surgery was equally traumatic. It’s a proven fact that children on the spectrum have greater struggles with the effects of anesthesia. Each one was so, so, so bad. Nonverbal and extreme pain don’t go well together.

On the fifth set of tubes we had Cooper’s adenoids removed. At the same time we were told by a Naturopath that a dairy allergy can be linked to ear infections. That was a little over a year ago. Cooper hasn’t been sick since although both of his ear drums have been scarred significantly.

If I’d only known. If only he could have told me his ears hurt. If only the doctors and pediatricians would’ve looked past his ‘autism.’

Needle in a Haystack

I’m telling you this because Cooper crawled in my bed this morning around 1 AM and my PTSD kicked in. Something is off with my son and I need to figure it out. And the task of that feels so daunting.

Even though I am always writing and talking about autism I don’t always feel like I have amazing advice for other parents. I more so just tell my story.

But, if I can tell you one thing it is this: You know your child better than anyone else in the world. You are the expert.

You see them at home. You lay with them. You study them. You are in-tune with them. If something seems wrong…don’t settle. You have the PhD in your child.

Call the doctor every day. Demand x-rays or a better level of care. That was hard for me at first. We are taught to believe that doctors know everything about healthcare and they don’t.

Never give up on finding answers either.

If I look back over the years I see a very high correlation to pain and behaviors. My son can’t communicate pain. So instead, he takes control where he can. He lines things up. He hoards. He nests. And then the pain comes out in other ways. He stops sleeping. He starts self injuring. He starts hitting me. I personally don’t believe my son’s autistic behaviors are ever his ‘normal.’

I can say with certainty at this very moment that something is going on with Cooper. I don’t know if he’s tired, getting a cold, constipated, sad, etc. But I can tell you I am sure as heck going to find out.

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