Understanding Self Injurious Behavior

To the autism families that are just learning about Self Injurious Behavior (SIB):

I know you’re scared. I know you’re sad. I know you’re mad.

I know you’re confused, so confused.

Guess what, that’s ok and you’re not alone.

We began our journey of SIB on August 14, 2016 my son was 4 years old.

My son Deegan was diagnosed with Autism clinically (ADOS) at 22 months old, on September 18, 2013. We began to see “signs” when he was just 13 months old and he began early intervention, speech, & occupational therapy at this age.

For those who may be reading and do not know what SIB is I pulled a definition;

SIB is defined as behaviors that result in physical injury to an individual’s own body. Common forms of SIBs in individuals with ASD include head banging, punching or hitting oneself, hand/arm biting, picking at skin or sores, swallowing dangerous substances or objects, and excessive skin rubbing or scratching.

On August 14, 2016 it was like the flip of a light switch for my son.

My son went from 0 SIB to crisis level stabilization for 2 months at Children’s hospital. More of his little skin was bruised, scratched, pinched, bit than it wasn’t.

Just writing this I see the images and stomach aches so bad. Seeing my 4 year old baby acting in this manor broke me and I’ll never be the same.

I know I suffered some type PTSD from this and I can only imagine what he did.

During this 2 month inpatient crisis stay I remember advocating for my son so hard, so hard. While feeling like I was dying inside.

I kept telling them something is wrong with him.

He couldn’t just go from a 4 year old the day before who had autism with only mild, mild, mild behaviors, to crisis level behaviors of SIB (I don’t even know SIB existed).

The only thing they could do was give my son an injection of Geodon (that is not marketed for children under 12) to shut his little body down.

I remember running into the hospital with his little body in my hands and collapsing in the ER floor searching for help.

I felt as if I was screaming for help and all these nurses and doctors just stared in confusion. I couldn’t barely speak and they needed me to, to try and understand what was going on.

I was so scared.

I pulled it together and finally began explaining to them that my son was 4 years old he has autism and is nonverbal and we were driving and he began punching himself so hard in his little head (they could see the bumps and bruises from it and he was continuing to do it in front of them).

I was so scared. And after I said autism to them, I can almost remember seeing them not scared. Seeing them look at him differently.

They didn’t pick him up and rush him back and put stat orders in to scan everything in his little body to see what was wrong like I thought they were going to.

Matter fact they never did one lab, scan, or medical kind of testing.

As soon as I said he had autism and was nonverbal, I know now they had their minds made up, it was his autism causing this.

I know now why they reacted this way. It took me a while to figure it out. And it’s something you’ll have to just figure out if ever your child experiences SIB.

It’s habitual behaviors they said. It’s behaviors because he’s not getting his way. It’s anxiety. It’s sensory overload.

He has intermittent explosive behavior disorder. He has an intellectual learning disability.

It’s because he has limited functional communication.

That’s all the things the doctors told me for months.

Well, the level of SIB he was engaging in wasn’t from any of these things they initially told me. It was from his little brain having blood on it.

It was such small amounts they couldn’t do anything about. Just watch while he was in severe pain and self injuring himself so badly from the pain that he was causing more injuries to his body and to ours.

He broke his arm during one of his cycles and fractured my wrist. All because he was in pain. Not because he has autism.

We’ve found a lot of different disorders Deegan has throughout his journey that unfortunately comes with pain and the pain leads to SIB. He still gets bruises, scratches, bite marks on his bad cycles of pain. But what I can tell you is it’s gotten so much better we’re learning as a team with Deegan being our guide and navigating us to how we can help him.

Yes, he’s nonverbal but he understands now where he didn’t three years ago. He didn’t understand how to communicate what pain is and that by putting his head through a wall isn’t going to take that pain away.

We take it day by day. There’s always a new day tomorrow.

We look at his progress. And do we have cycles of regression and scary cycles, yes. But with every cycle he comes out, we come out stronger.

We just made it through the worst cycle he has had since 2016. His doctors and his school was recommending an inpatient stay for him. I was scared.

I almost gave up, I needed a break. I have 5 other children. But I didn’t and I’m so glad I didn’t.

He hasn’t been back since 2016. He’s so worth it, so worth it.

I could go on and on, there’s so much to Deegans journey. It feels amazing to be able to write about it to others that understand.

Others who don’t go through it, they don’t understand. It’s not their fault. I get it, it’s hard for them to give me the empathy I need when I share what little I do with them about these tough times.

It’s a nice comforting feeling to know you’re not going through this alone and to be able to share and get the empathy you need when sharing your journey.

Written by, Cassi Cook

Feel free to follow Deegan’s journey on Facebook at Deegan’s fight with Autism. Have a blessed, beautiful day and remember you don’t have to live your future and your past today. Live today only because if you try the contrary it hurts and it’s hard, really hard.

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