The Underbelly of Autism

His teeth rip my flesh.

I can’t pry him off.

He yells “NO”, stands up on the bus seat and dives over the back of the bench in front of him. I catch him before he lands head first on the hard floor below (and the bus monitor holds him from behind) but he latches onto my arm with his teeth repeatedly before we can get him into a sitting position.

This is the dark side of autism; the aggressive and/or self-injurious behavior part.


The night before the bus incident we gave Luke a buzz cut and he got thoroughly upset as per usual. He hates getting his hair cut. We do it at home and last night my husband had to mostly sit on top of him in the chair since he thrashed around so much.

Since Luke, 12, is mostly non-verbal we aren’t sure which Luke detests more, the sound of the shaver or how it feels on his head. We’ve tried therapy to desensitize him to this process but so far no luck. My hubby, Mike, a tough Aurora cop, got bit on his leg while I held on to Luke’s lower half and a friend cut his hair.

Don’t get me wrong.

We love Luke so much and our family wouldn’t be complete without him but that doesn’t mean things are easy. Far from it.

I remember when Luke first lost his speech at 3 years old and our older son, Brandon, wondered if he would ever again here Luke say, “Hi, Brother”. Brandon was 8 at the time and is now 17 and he hasn’t heard it since. We do hear a very occasional word from Luke and he continues to learn to use an app on his IPad to communicate but we still so often don’t know why the meltdowns happen. I try to play detective and figure it out but often fail.

The thing with Luke is he can quickly recover and 10 minutes after a huge tantrum he turns into our smiley, social guy again. There are just so many daily cycles.

As April has arrived and along with it Autism Awareness Day/Month I don’t think it is more “awareness” that we need but more UNDERSTANDING of the toil that autism takes on the individual who has it and his or her family.

So if you see us at Target, and Luke is laying on the floor yelling, don’t assume I’m a terrible mom. Don’t assume he’s a horrible tween. JUST DON’T ASSUME.

He may be overwhelmed by the noise or the busyness and having a moment. If that moment involves him banging his head on the floor or lashing out give us a hand not a judging attitude.




About morethanwords1

I'm a mom of two very different boys. One has no probelm talking, loves and is gifted at reading and writing and the other has a bright smile, amazing laugh but can barely talk.
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6 Responses to The Underbelly of Autism

  1. Jacquie says:

    So well said and written. You are an amazing mom and Luke is beyond blessed to have you. Love you, my friend!

  2. Natalie Pamphile says:

    There is no getting around the fact that Autism Spectrum Disorder takes a huge toll on families (and marriages). I hope that after reading this post, we will all come away with a little more insight and empathy, and will remember to be gracious when we cross paths with a person with ASD who is behaving in a way we may not understand.

  3. Amy Gfesser says:

    Thanks for this blog, Deb. So many people who do not have to have “autism” in their lives do not even try to understand. Sometimes, we just need someone to listen to us without judgement and without giving advice.

    We, the families of individuals who have autism, are a huge “mission field”…..We are desperate for support and help. One does not need to go to another country to serve as a missionary. We are right here.

  4. Michelle says:

    As a helper for Luke in Sunday school at church, I feel your pain. 😉 Pun intended. I learn so much from Luke and from your family. You all have a special place in my heart.

  5. MERIDEE WELSH says:

    no words. you are amazing.

  6. Truth….love you guys! ❤

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