Apr. 27th, 2009

ladymirth: (comfort jwm)
Ann Bauer writes about the Darker side of Autism. 

My brother is autistic. Not high-functioning austistic, just severely autistic. He's eleven years old and can't understand more than direct commands and can't read or write. He loves attention and people, and he's sweet and quiet and affectionate most of the time. He loves dancing and music and swimming pools and long drives along the beach. 

He also goes through periods of intense rage, where he screams for hours and stims and slams doors hard enough to break them. He will pull our hair and claw at our faces and bite and hit anyone who tries to touch him. My father, who is 6 ft and 210 pounds, is the only one who can subdue him or withstand his assaults. My brother is developing in the same build as my father - tall and with significant strength even at the age of 11. The more he loves a person, the more he takes the brunt of his anger out on that person, or harm himself if he isn't allowed to hurt someone else. He loves Dad more than anyone else; as a result, my father's body resembles that of an SF veteran's. 

We early on decided not to dope our bright and beautiful baby up with pills, like he's some kind of a wild animal. He doesn't throw tantrums because he's bad. They can be triggered by anything from a nightmare to a bird chirping outside (some sounds are painful and disorientating to him) to being sad about being scolded. His response to sadness and guilt his also anger;  even after the inital reason for the tantrum has passed, his sadness and guilt at having hurt us or being scolded for it will make him continue to be angry. 

I know my brother's world is a painful and uncomprehending one and that he isn't in control of his reponses. Just as I know that his world is also a beautiful and simple one - being surrounded by family, praise and attention, bright colors on TV all elicit huge grins and overwhelming happiness that he can only express by stimming, dancing and full-body hugs. I know he doesn't mean to hurt us. 

But we're still human. We can't help but yell at him and hurt him back sometimes, when his tempers go on for hours and neighbours become curious and his fingernail marks burn all over our arms. I don't know what's worse to watch - my mother's unreasoning anger that has her crying and hitting her own baby when he won't stop hurting her and screaming that he's a demon sent to by God to punsh her for her sins or my father's resigned stocism as he impassively lets my brother beat him and scratch his face bloody until he burns himself out. 

He rarely beats on me, though. I can't decide whether its because I don't spend much time with him and therefore he is least affectionate toward me of all the family, or because I have never hesitated to return his blows with interest whenever he does beat me. The rest of the family says that he's scared of me. I'm not proud of this, I don't want to hurt my baby brother whom I love, but I really do believe that there should be at least one person in the household who can put the fear of God in him. Usually, he both adores and is cowed by my father, but Dad refuses to check him when baby is in one of his pain-induced rages. So I do it for him. 

In my defence, I at least make sure I never hit him in anger. Nor do I hit him unless he's hurting someone else and will not respond to any other method to get him to stop. When I hit him, it's a calculated message: "this is what it feels like for the person you are hurting. You stop inflicting pain, and I will stop inflicting pain on you. You can scratch and hit all you want, but I'm going to keep returning every single one at you until you stop. I don't care how angry you are, it is NEVER EVER okay to hurt someone else because of it. If you do, YOU WILL GE HURT." 

Now, if he is as incapable of self-control they say he is, how come he reigns himself in when I give him a warning or refrains from hitting me even when he's in a tantrum? He's enough in control to be afriad of the policemen, for Christ's sake! We've told him that policemen take naughty children to jail, and he stops all stimming and screaming when we point one out. I know that fact that he suppresses his tantrums doesn't dissapate his anger, but at least it stops him hurting other people.

I don't know whether all autistic kids are capable of that kind of self-restraint, but I do know that for my brother, fear tactics are usually a temporary but effective counter-measure against uncontrolled aggression. True, these don't work on the rare occasions that he really loses it, but we can still subdue him when he needs to be. 

But I'm afraid of the future. Will we still be able to control him when he's 6 ft tall like my Dad, and he weighs 100 pounds more than I do? Will my Dad be able to be his son's punching bag when he's old and frail and brittle? Will he one day hurt my parents when my sister and I are no longer at home to intervene? I've always promised myself that my brother would live with me if and when my parents got too old to handle him - I've already told Boy that I won't marry him if he has a problem with that. (Group homes and social support are not viable options for us in the third world). But what if I can't take care of him? My husband, whoever he may be, may be a very good man, but will he be able to bear all the inconveniences and hazards of co-habitation with my brother for years and years, without the bond of blood that ties me to him? Will my children, if I have any, be safe around him? Will I one day be made to choose between caring for his life and having a life of my own? 

Ann Bauer's resolution to kill herself if her son ever took a life is deeply resonant with me, because both my parents have expressed similar resolve. My mother, in her lowest moments, have declared that if Baba ever proves to be uncontrollable and dangerous to others, she will kill him herself and then commit suicide. My father repeatedly says that his only desire is for Baba to die before he does, so that no one else will be burdened with the task of caring for him. My sister and I have railed time and again at my parents' conception that our brother would ever be a "burden" on us, but in our secret hearts, we all know he will be in the long run. We all love him beyond everything, but it doesn't change the reality that my parents are never going to have the peaceful sunset years they deserve.

I hate watching my brother grow up. It is a travesty to watch him grow big and strong and beautiful, when his mind will always remained trapped, stunted and under-developed and he will never be able to gain more than a child's comprehension of the world around him. I wish I could freeze time and make him stay a small boy, who is regarded with pitying forgiveness by society, whose tempers can't yet accidentally kill his parents and whose only impulse when he meets a pretty lady is to kiss her on the cheek. 

June 2009

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