Half the Story (and Then Some)

I know I have become the ‘autism’ lady. (Hopefully without the eye rolls.) I talk a lot about it, because I think a lot about it. But today I want to talk about the other half of my son’s story. The other A word. Auditory Processing Disorder.

When someone has autism, they can also have co-occurring conditions. The co-occurring conditions can be many or few, severe or mild; just like autism is a spectrum. They can vary greatly from one person to the next. Lots of things come into play, like genetics, environment, early intervention, etc. It’s important for everyone to know – above all else – that each person is unique and should be treated as such. Autism is not cookie cutter.

OK back to my son. When we found out Simon had auditory processing disorder, the word autism wasn’t officially in the ring yet. He was not even two at his first hearing test. And we had it repeated months later to confirm that his hearing was in fact perfect. That is always the first thing they want to rule out. Before he was three, we had to have him under anesthesia (scary) for a procedure to see if his hearing was damaged somewhere further in. Again, the tests showed perfectly functioning ears, but what it also showed was the message was getting lost or scrambled on the highways from the ears to the brain. It was explained to me like this: imagine you are listening to the radio and someone is turning the volume down and up and down and up constantly. Try to imagine getting only every other word. Would anything make sense? Would you get tired of trying to figure stuff out? Would you tune it out when it became more confusing than helpful? This knowledge didn’t make it easier, but it all made sense now. His ignoring us was more than just ignoring us.

So life went on. We kept him in early intervention. We tried sign language. We tried PECS. Everything was slow and very very difficult for him. So here is where the autism came into play. We knew he was missing information. We had scientific data that his brain was not getting the messages in the right order. But now we also have this. No motivation to WANT to communicate. Autism is the lack of social adaptability. An infant will want to watch your face and learn your facial gestures. Will want to learn how to make you do what he wants. Will want to make a connection for the sheer joy of connecting. Autism is what happens when the part of the brain that does all this is affected. My son doesn’t instinctively want these things. BUT he has come to find the value in these things. This is where the hard work comes in. Not only by therapists, but the parents must consistently build these skills. What some people consider a lost cause, I consider no different than a damaged part of the body that needs physically therapy to strengthen it again. It’s not impossible. It may not be fully perfect, but does one have to be fully perfect to be functional? Or happy? No. Therapy is therapy. Brain or body, we are pliable and can heal. The brain especially can regenerate and create the pathways that where not working from birth. And that is why all insurance should cover therapy for autism…but that is an argument for another day.

Have I mentioned sensory issues? I’m sure you’ve seen this part of autism, the rocking, the ear covering, the intense dislike of touch etc. This is a common co-occurring condition also. It’s very different for each kid. Luckily, Simon doesn’t suffer to the extreme some do. His life isn’t disrupted too much from it. He takes in information at much higher frequencies than we do though. His brain is taking in almost all its information through sight. Millions of pictures filed away in his brain. This is a lot to process. Add to that loud sounds and fast-moving objects, or unpredictable ones, and you have one very over stimulated kid. His brain can’t decipher what information is more valuable, it all goes in at the same frequency. The natural inclination to be able to zero in on that one thing to focus on isn’t there. It is what makes learning difficult. Paying attention is difficult. There are distractions everywhere. And it can be overwhelming. So Simon compensates by holding his ears to mute the input and gain some balance. Or makes a sound louder to drown out the input and gain control that way. It gives him time to register and focus on what he needs to. People think it’s odd, but it’s actually great. It’s him taking care of his needs and not freaking out.

So this is my Simon in a nutshell. It’s autism. Its auditory processing disorder. With a little sensory mixed in. Shake that up and you have a nice little cocktail of issues to make my kindergartener a superhero in my eyes. Because I know he works harder than most, and he is happy and loving and beautiful despite it all. Yes he’s quirky. But so what? He’s mine and I love him and I hope that I taught you something so maybe you can love him too. Or at the very least be thankful. Because the human body is complex. A miracle. A mystery…and taken for granted. Be thankful! And please…be patient to those that never can take it for granted.

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Suzy Higley

Suzy Higley

Wife to my childhood sweetheart. Stay-at-home mom of 3 awesome boys, ages 14, 12, and 5. My youngest is non-verbal and has Autism. Currently starting a community with other Autism Moms called Better Together. More social learning opportunities for our kids on the spectrum are needed...and because I couldn't find them, I'm creating them. I also draw and paint on both paper and walls...and furniture. And speaking of furniture, I have a chronic furniture rearranging condition that I'm seeking help for. Not really...it's my favorite.

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