A couple of days ago, Alphonse woke up with a swollen eye, new bruises on his face, and a sour disposition. The day before, he had been intractable in his self-injurious behaviors and all our attempts at redirection were unsuccessful. I guess given that day’s circumstances and the days previous to that, a meltdown was to be expected. Then again, I guess I have gotten a bit soft and a wee bit more optimistic, so used was I to having back my amiable, sweet boy.
And then the inevitable happened. I was upstairs cleaning our bedroom, confident that he was going to be alright downstairs with three people looking after him. I had barely started on folding the sheets when I heard a loud angry scream (his), and more screams and shrieks afterwards. When I got to him, he had already pulled clumps of hair and ripped a shirt. He buckled furiously under the weight of his restraints (two people holding back his arms, one holding his head in case he decided to hit it- we were lucky he didn’t kick us that day) and we wrapped him with a thick blanket before he calmed down.
As I investigated the events of that morning, I was told that he had been calm before that fit of anger. The person’s intent was only to greet him with a kiss. Understandably, Alphonse’s “victim” was shaken and upset by this sudden turn of events. How can he be calm one minute then fly into a rage the next? It is quite difficult to explain how sometimes even the most innocuous things can set off a negative reaction in individuals with autism.
Imagine trying to control all your senses to keep calm, to hold back all the sensations coming at you all at once, only to be suddenly interrupted or surprised with abruptness of sound and movement. Imagine suddenly being assaulted with a sound or movement that you felt was threatening. Imagine not being able to discern intentions. Imagine fear and panic you cannot express with words. Were I in his shoes, I don’t think I could have held on to my calm that easily too.
I don’t think people understand just how much we’ve asked of Alphonse in the last year alone. When we decided to make changes to our household, it was always with the intent of caring for and helping the people we love. Unfortunately, we also overestimated Alphonse’s capacity to adapt to change and we are all paying for it now.
All those changes in his routine, the different people in and out of our home, the disruption to all that is comforting and the same, the chaos brought about by the unpredictability of each day- didn’t we ask him to accept all these without question or explanation? Didn’t we ask him to bend over backwards for us, while we tried to accommodate others’ needs before his? How could we have expected him to watch placidly while everything around him changed and continues to change? How could we not have expected him to react with aggression and self-injury? We bear the guilt of his pain.
It’s devastating to see Alphonse angry, to see the smiles replaced by a sullenness surpassed only by his ability to inflict damage to others and to himself. But it’s just as devastating to find fear and apathy sown in the hearts of those whom I expected to love him unconditionally.
I am heartbroken for Alphonse.