Many people ask me what it is like having a child who is on the autism spectrum. I am never really sure how to answer this question, as he is my child, who I love and adore, and yes he can be so difficult but he is mine. I think in such instances what happens is that my protective parental nature is evoked.
The truth is having a child with autism for me is a mixed bag. No two families or individuals are the same so some of my personal views expressed in this article may not resound with others. There are some parents though who may read this and think we are living the same lives.
I find having a child with autism a lot of hard work. It is constant, it can be exhausting, especially as he gets older and I see more and more of his potential but also his deficits. Because he has classical autism, which comes with a learning disability and social issues, I feel like I am not only his parent but also his teacher. I find because there is no incidental learning taking place I am constantly having to be his guide as a parent but once again as a teacher. We are constantly focussing on appropriate social behaviour and reinforcing educational concepts. At a recent school meeting, when the occupational therapist gave me an extensive list of things to include as a sensory diet at home, I thought I might cry. I felt that I could not fulfil another role… it is enough. The hard work is pervasive. It not only applies to all the different roles I find myself playing in his life. It is physically hard work, making all the different meals, managing all the extra therapies, accommodating his needs in relation to an already busy home and personal schedule. It is also emotionally hard work, helping him and my family understand his difference, dealing with his meltdowns and moodiness, let alone my own fear and worries.
I also find having a child with autism like mine, who has a big character crazy fun. I find myself having to get down to his level at times, which includes me behaving in a carefree child-like crazy way. We have a great amount of time giggling at his innocent ways, his big personality, his fun loving nature.
I find having a child with autism that I often marvel at him, his beauty, his innocence, and his sweet and personable nature. Sometimes this is not all positive. I marvel at how hard things are for him, how he cannot fathom a simple concept.
I find having a child with autism all consuming. He is my life. I know parents of neuro-typical children also feel that their children are their life, but as a parent of both neuro-typical children and a child with special needs, there is a difference. I cannot articulate the difference; it is not that I love him more or less than my other children. It is not that I care for him more or less. It is the way he is always with me in my mind. I worry about him more, I think about the impact of everything on him, he is with me consciously more than my others and I know that he is a lot in my subconscious, there are often many issues about him I find myself battling to resolve.
He is not only all consuming in my life, but in my family’s life. He is everyone’s life; he has a substantial impact on the family. My neuro-typical children think about him differently compared to how they think about each other. They treat him differently to how they treat each other. We sometimes do not get to be a “normal” family, in what we can and cannot do. This can sometimes be very unfair on everyone.
The biggest philosophical question I am ever faced with is whether I would change my child? The truth is I do not know. Sure I would love him to not have autism, but I know the autism is what gives him so many of his unique elements that I love about him so much. The way his brain works differently in truth is one of the most appealing and yet most frustrating things about him. He is who he is because of the autism. I do know I wish things were not so difficult for him and I do wish that we could sometimes be a more “normal” family and do things others do. It makes me feel bad to think such things but thinking these things is normal. It does not mean I love him any less. I do sometimes wish he were different. In truth, I also wish sometimes I was different, a person who did not care so much, a person who did not internalise it so much, a person who did not think about it all so much. I also know though that I am the best parent for my child. No one will love him like I do and no one will try as hard as I do. So when I remember all this, no I would not change him for the world or myself. Therefore yes; it is a very mixed bag!