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Aggression: Understanding Alex

  • Posted on April 8, 2013 at 10:05 AM

Kathleen and Kim wrote a post for The Autism Channel about aggression. I followed it with an initial post of my own about my son Ben. Now, I want to focus on Alex.

Alex is a more difficult “puzzle” to solve when it comes to aggression. For those who’ve been following along with my family for a while, you may remember that Alex used to be a very happy, contented child, who was also rather oblivious to his surroundings. When Willy and Alex were little and would “compete” over the same stuff, Alex refused to compete. If Willy took a toy from Alex, then Alex was content without it or would simply get something else. If we tried to give it back to him, he’d often simply set it aside and Willy would claim it. The only thing Alex was ever particular about was VeggieTales videos—which ones to watch, which parts to watch, ect. (He was also particular about touch, sound, and people, but not things.) Alex was genuinely, consistently happy.

At first, Ben’s birth changed little. Willy soon outgrew the toys that captured Alex’s interest. They veered further apart developmentally. Meanwhile, Ben was slowly catching up to Alex. At some point, Ben’s and Alex’s interests overlapped and there was once again “competition.” Ben would take from Alex and Alex would turn to something else.

Then, one summer, from seemingly nowhere, a switch was flipped. Alex started asserting himself. We encouraged this, because we had become quite concerned about how easily Alex could be taken advantage of without adult oversight and interference. A little assertiveness would be a good thing for Alex. Except, with Ben and Alex both having very limited verbal and social skills, this battle of assertiveness escalated rather quickly. At first, Ben was always the aggressor. The strife between them continued to escalate despite our interference and Alex “figured out” that aggression could help him get his way. Now, they both act aggressively when they want the same thing. They can go from being completely uninterested in each other to full-scale battle in a few seconds, skipping all the steps in-between.

We’ve developed strategies—mostly separating them and ensuring we have two of any highly desirable items, like Kindles—that reduce these incidents. Though they’re both still significantly delayed, Ben has surpassed Alex in language and social skills development. So, unless he’s having a bad day, Ben is usually able to avoid instigating incidents. Unfortunately, Alex is intentionally (or so it seems) instigating incidents, and not only with Ben.

Several months ago, Alex took up pinching—seemingly as a pastime. Even though we are people who understand that behavior=communication, we’re stumped as to what Alex is trying to communicate. Sometimes the message is obvious: You’re bugging me, get away. But sometimes it’s not: Like when he “greets” me by grabbing the underside of my arm and pinching me with his whole hand. I’m not the only target, but at home I seem to get the brunt of the “happy pinching,” meaning him pinching me when he’s happy and smiling as if in greeting. He’ll even echo “stop, no pinching.” It doesn’t seem as if he understands the words, but as if that’s the response he’s trying to get and he’s happy to have gotten it.

It’s not just happening at home, either. He’ll pinch anyone, from people who are helping him to random strangers. In the last few months, he’s added biting. If he can’t pinch, he’ll try to bite. I’m at a loss of what to do with this. I’ve worked with the school, but they don’t seem to be making any progress either. We don’t know what Alex is trying to communicate, nor do we really understand the function(s) of the behaviors. The only resource in our area that we haven’t tried that I’m aware of involves signing my child over to CPS, which is not going to happen. Ever.

I look back on the Alex we used to know, who was always happy, always peaceable, always so easy to please. It’s not that I really thought that could last, but… Aggression can escalate and become an even bigger problem than it already is, especially with puberty, and that’s exactly where Alex is right now—starting down the path of puberty. I fear if we can’t solve this problem soon, then it’s going to get worse, possibly much worse.

The lack of support is a big problem, but what’s worse is the lack of understanding and the tendency to place blame. Nothing is simple, certainly not aggression.

Our Hidden History

  • Posted on October 26, 2012 at 8:00 AM

In an effort to prepare for Willy’s appointment with the geneticist, I pulled the major records from all three boys’ medical files. Each packet of documents in these old files corresponds with a story point on the memoir I’m writing, but I hadn’t pulled any of them yet. For a while, I just re-read what had been said and what had been determined. I spent a little longer on Ben’s, because getting an accurate diagnosis was a bit more difficult with him. I thought about the moments and the hardships that had gone along with each of those packets of papers.

Reading them again, I was surprised at the hidden prejudice I saw so clearly. Alex, who is the most severely autistic of my children, was diagnosed with PDD-NOS, not autism. Though his verbal and nonverbal communication delays are extreme, he’s more socially-inclined than expected of an autistic individual. His ability to engage socially is impaired, but his desire to engage socially (with adults) is not. For this reason, he did not meet the criteria of autism.

As time has passed, as their skills have improved, neither Willy nor Ben showed this dramatic decreased desire to socialize that was expected of Alex in order to obtain an autism diagnosis. Their ability to socialize is impaired, and this ability is impaired in some different ways than Alex’s is, but the desire is there and it has always been there with all three boys in one way or another. Just not the “normal” ways.

One thing my husband and I learned early on is that if we wanted to engage our children in a social way, we’d have to do so where they are, which wasn’t where we’d expected them to be and it certainly wasn’t where we were. So, we adapted. With Willy, we were able to adapt the most successfully, because we could understand what motivated him. With Ben, we were able to adapt with moderate success, because we could understand enough of what motivated him to do so. With Alex, we’re still trying to figure out what motivates him. We’re still adapting. He’s still very much where he is, and we have to come to him to make the connection—but sometimes he just seems out of our reach.

The motivation is there, but with such a severe communication disability, we can’t quite make the fully satisfying connection that Alex craves.

The possibility exists that part of the reason that Alex struggles as much as he does is because he’s having seizures that we’ve failed to recognize. Until we saw this neurologist, the possibility of seizures—of Alex having seizures “now,” instead of developing them later—was never mentioned. He was never tested for “hidden” seizures, because we didn’t know that he should be. The more I read about epilepsy, the more I wonder: Is this the missing piece? Is this the key?

We won’t know until after a few more appointments—one for the initial evaluation and one for the video EEG and one for the post-evaluation, and possibly more in between—the first of which has been scheduled for early December.

Flipping back through these packets of information, I read the doctors’ words and there are passages that slap me in the face. These assessments that we endured to get where we are now were wrought with prejudice: Everything about them is underwritten with the assumption that it is wrong to be autistic. And what’s worse, the answers these assessments provided might not even be enough.

Since almost the beginning, I recognized my children as neurologically different or neurodiverse, and yet it’s only within the last few months—with the onset of epilepsy—that I’ve taken any of my boys to a neurologist. Always, it’s been psychologists. When I define autism for publication, I start by referencing the DSM-IV, a psychology manual. Throughout this time I’ve been suspicious of psychology, of the nature of the discipline, of its start with Freud, of its connection to eugenics, of its overzealous classification of “disorder.” And yet, here I am, realizing with not a small bit of guilt, that I’ve been enabling them to define autism for my children, for my family, and even for my writing. I’ve been enabling them to define, despite my resistance, the nature of my children’s being. I’ve been enabling them to set value (rather, lack thereof) on their worth.

I can justify it. The neurologists were always too difficult to get to. The referrals were always for psychologists. The system funneled me in this direction, and to get my boys’ the services and accommodations they needed I had to work within the system. I know why I did what I did.

But it all sounds hollow now. Empty. Mistaken and misguided.

What if, this whole time, Alex was having untreated seizures? What if treating those seizures empowers Alex to make the connections that have so long eluded us all?

Whether that’s true or not, I can’t help but feel that, despite my best efforts, I’ve failed my sons.