So Just What IS Wrong with Your Son?

It’s a question I get a lot and it has a complicated answer. I usually just say autism and leave it at that. If I’m feeling generous I might say high functioning autism or even Aspergers. It’s the easiest answer, it explains why he seems “weird” to you, even if it isn’t the whole answer.

medical record

When he was younger if someone asked, I just stopped. I didn’t say anything at all. There were no words to describe what we were going through, even if a doctor had given us a straight answer I wouldn’t have been able to articulate it to someone else. What was wrong with Yoshi? Everything.

We still haven’t gotten a straight answer from the doctors. No one is sure why his body doesn’t seem to work the way it should. In the last eleven years my husband and I have pieced together our own theories for the reasons behind it all, but we also stopped caring so much about the whys. We are still trying to nail down all of the solid whats.

Yes, Yoshi has high functioning autism. We can start there. It is the most obvious piece of the puzzle. In our house HFASD looks like a hyper-verbal little boy who bounces from one obsession to the next. His perceptions and expectations influence (dictate?) how we make a lot of our decisions.

He cannot read social cues or pick up on vocal nuances. He has no filter—and I mean no filter. That is not to say that he lacks empathy because once he is told that he has said something inappropriate, he feels terrible (no one torments themselves like Yoshi), he just can’t master the art of not saying those things in the first place.

Yoshi might be the most annoying kid on the planet. He. Never. Stops. Making. Noise. Never. The noises vary, along with his obsessions, but they are constant. Besides the steady stream of sound effects from his mouth, his hands are busy spinning things (he will spin anything) on the closest flat surface. Those things also make a crazy amount of (very annoying) noise.

He has a huge heart. He genuinely cares for the people in his life and he desperately wants to make friends. Someday I hope he is able. Yoshi has a fierce sense of justice, and that tends to get us in trouble more often than you might think. He will not do the wrong thing, nor will he tolerate witnessing others break the rules. And there is no gray in Yoshi’s world. A lot of his meltdowns stem from seeing others break rules and get away with it or not understanding that sometimes there is space between right and wrong.


… it does not happen like it does for you or me.


Those are just the things inside of Yoshi’s mind. He also has a disconnect of sorts between his brain and his muscles. This miscommunication means that he may try to tell his arm to straighten, but it doesn’t straighten.

Everything that Yoshi can do physically, he does through muscle memory. It takes a very long time to teach his body to do those things, and then he can only continue to do it because he trained his muscle to know how. When his brain tells that muscle to complete the task, it does not happen like it does for you or me.

As soon as you think, “I’m going to move my finger,” your finger will move. You don’t even have to consciously consider it. You just move your finger. When Yoshi wants to move his finger, he tells his finger to move and hopes that it happens. There might not be a delay or there might be. It might move further than he intended or not quite as far.

This disconnect affects Yoshi’s gross, fine, and oral motor control. Because he has to consciously control his movements, he struggles to use both sides of his body (or the top half and the bottom half) at the same time.

He does learn, it just takes a long time. At the age of nine he was able to stick out his tongue. He recently was able to lick the front of his teeth. After two and a half years in private gymnastics lessons he learned to lock his elbows (in a straight position). In six weeks of two-a-week, half hour swim lessons he learned to hold his hands with his fingers touching (that was basically all they did—hand over hand, until he could do it himself.)

He also forgets. If he stops doing something his body forgets how. We have had him in swim lessons since he was nine months old, very seriously since he was about three. The kid can swim. He has needed to be rescued on more than one occasion because he just… forgot. Yoshi takes swim lessons year-round, even though he can swim (adequately) because if we stop, he will literally drown. I’ve seen it happen.

I don’t know if the muscle weakness that he experiences is caused by a lack of control (poor coordination) or just a need for increased strength. I don’t know because I’m not a licensed therapist. But we recently got good news! My husband’s insurance decided to cover autism therapies next year, including speech, physical, and occupational. It’s about ten years too late for us for a lot of things but we are excited to be able to get him OT next year!

Yoshi has battled an intermittent undiagnosed GI bleed his entire life. When he was a baby, it was diagnosed. He had a protein allergy that was basically shredding the insides of his digestive tract. The bleed wasn’t intermittent at that point. It was constant and it was killing him—literally.

comic looking for doctors

We cleared it up when we completely removed protein from his diet. Then it came back. Then it went away. Then it came back. You can see where this is going. There was no rhyme or reason. We kept food diaries. We did elimination diets. We did all the tests. We saw all the doctors.

This was the period of his life when we battled food allergies. At first, he was (literally) allergic to everything. Then he was allergic to almost everything. Then no one could agree what he was allergic to, or even if he was allergic to anything. A lot of the doctors were trying to connect the GI bleed to allergies, even after the other allergy symptoms started to subside and the test results were inconclusive (at best.)

We’re eleven years in now, and it’s better. My husband and I actually think that we cracked it (we think it is an issue with chlorine.) A couple of years ago he had a nasty flare up and there are a lot of residual potty issues so the weight of the entire issue still hangs over us.  I don’t know if we’ll ever be completely free of it.

The truth is, there is nothing wrong with my son. He struggles with a few things, he is different in a few significant ways. He gets a little closer to “normal” every day, even if he will never quite get there.

I’m so fiercely proud of him. He brings me joy, even when he is making me crazy. Man, I love that kid. But for now, this is the list of struggles for my son—autism and all the ice cream.

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Image Source:
Comic courtesy of my husband
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