THE BLOG

Sister to Autism

24/06/2014 17:50 BST | Updated 24/08/2014 10:59 BST

When I look at him, the first thing I see is my brother. The first thing I feel is love, but the second is always worry and then the guilt. This is the perpetual cycle of emotions, which have ruled supremely for eleven years. It is something, which can at times be immensely crippling, and at others, entirely grounding. When humanity is lost elsewhere, I find it within, through my experience with my brother.

I experience my brother's autism in a similar vein to my parents. I feel the worry, the unrelenting concern, I feel the isolation even, second hand, but no less impactful. I am in-between being the authoritarian and the outsider; I am a close connected observer, with no power to control or aid. I have no avenues with which to console my distressed sibling, perhaps not even a proper sense of how to do so. I understand that to a parent, the cry of their child is unbearable; this feeling often extends to me. There is a sense of helplessness, but never in the self-indulgent sense of the word.

I can feel like a stranger to my brother. He can feel almost unreachable, devoid of emotion or a capacity to regard me as a sister who he might love. My access is limited, my access to him and to the brother, sister relationship I sometimes desire, although I can never imagine an exchange satisfying me. I may look at people with functional sibling relationship with a sort of lust and perhaps a retrospective sadness, but ultimately, despite the strain, nothing could replace it.

I feel love on a fierce level, I feel protective, but without means with which to practice it. I feel anger when the stories of social dysfunction at school or gatherings reach me. I feel angry when children don't have the patience for him and I worry about his outcast status. I feel guilt as strongly. I feel it when I command attention over him, I feel it when my patience runs thin, I feel it when I am thoughtlessly reactive and I feel it when I am anything but a perfect influence. I feel guilt in regards to my parents. I feel it when I engage in selfish behaviour and put on any sort of pressure in requesting attention, although I feel guilt in isolating myself from the people who are already habitually isolated in many aspects.

In regards to being the sibling under the parents of an autistic child, I have grown up without the blanket of machine like parental operation. The humanity always shone through when there was no energy left to save face for me. The daily struggles my brother faces only extend to struggles my parents will face. I am a third party observer of catastrophe in my home. I am unfamiliar with the struggles and not out of ignorance; I feel isolation from my family, because I cannot be involved in such issues, because my awareness is not necessary. I am unable to help, I am unable to contribute, I am almost not a part of my family if I am not as much a part of their struggle. I can even feel guilt out of including myself in the experience, as if I am not active enough in it to justify the sadness and loneliness I profess to feel within it. I have no direct responsibility, no direct obligation, so how is it my battle? My worry and concern feels met with confusion, as if I have no basis to feel it and I feel conflicted as to whether I should. The live your life, we'll deal with this attitude, is one of hurtful exclusion. But retrospection is both a great and terrible tool. With it I understand the loving nature of their actions, but we are quicker to understand and internalize the feeling then we are to listen to justification, we will sooner react then respond. This is an exemplification of my own experiences with autism in relation to my brother, the simple fact that we are reactive to it, before we are responsive or understanding.

Right now, the only thing I beg is that this is not received as a dramatised narration of a sister's self-indulgent anguish. My intent is to extend the experience of the parent, to that of the sibling. It is harder to generalize in this aspect. Experiences as a brother or sister vary from that of parenthood. One can enter sibling-hood at any age, where a parent generally enters such a situation as an adult. This can be an important distinction, and integral to how one might receive the experience of an autistic family member. This is why I cannot suggest that my lone account is universal, nor will I attempt to. The progression of ones cognition at the time of a siblings introduction, can greatly impact the level with which it may affect you or the level on which you understand. You may be an infant and brought up with it as more commonplace then a teenager who is already formed in behavioural patterns. There is a vaster range of experiences in this aspect; I can only narrate my own.

If I was to speak lastly as a spokesperson for my family as a unit, I would tell you that we do not play victim, and we are not simply 'dealing' with a dud card. We don't perceive this child as a burden or a dead weight, he is not an obstacle, he is not a subject or a tool to serve our own senses of self, and though we can always falter at times in our thoughts, and it can be harder to tell ourselves this some days, we are family and there is always love. There is no blame on the child or their autism, though it can sometimes feel like it's an easy scapegoat for our problems. There is an insensitivity that suggests that expressions of distress are requests for pity or signs to push us harder, but often times these are not calls for advice, these are calls for support, and these calls come rarely, because they are too regularly met with judgments on our inadequacy's as parents or siblings. Human faults deny the perfect backbone for this child, we lack consistency, we lack discipline and we lack strength. To be reprimanded for this is sometimes necessary, but on an unrelenting basis, only serves to diminish our sense of ability. Comparisons come too easily, often times they only serve to make us regretful or sorry for ourselves. This is when those insidious victim attitudes set in, this is also where they must stop; this is where you shake it off and keep on, some days you may accept it with resignation, but removing the assumption of difference you are left with the simplest of concepts: Here is my brother, how I love him.