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  • I have been meaning to write on autism with a more scientific style. Nevertheless, living with an autistic child is less of a science and more of an art, an art of loving that parenthood comes with but is sometimes lost under the pompous lights of a name to the problem.

    I thought that starting to write from the outset of this journey is the right thing to do. We tend to forget details that get engraved in our ordinary live or hidden under the importance and prominence of recent experiences. Therefore, loosing my touch with the peculiar and discomforting feelings that come with a diagnosis that puts your child in the Autism Spectrum is very possible if I do not keep a record. But this is not a diary. I am writing this piece with a very specific subject in mind. It is not a generic advice think. It is the stirred up and swirled around my tongue gist of the understanding I have formed during my first days with a diagnosis.

    Well the doctors will say to you (at least ours did) that your child is the same child and nothing has changed. This is true but very hard to conceptualize correctly initially. Theories of the symbols' power are there, and the fact is that whatever is given a name is not the same thing again. The name carries over a whole contextual background, abstracts and averages over reality and in the case of autism provides a peek to the future that is not very attractive. The child remains the same. But her/his problems are now deterritorialized. It is not my son falling on the floor to express his anger, it is autism. It is not my son that speaks very little, it is autism. It is not my son who does not know how to play, it is autism. Autism looks like a demon that constantly slaps your child. And as you read about it, you suddenly find out more wrongs about your child; you observe his eye contact; you ask yourself: has he smiled socially, does he really express himself with the faces he is doing, can he love me?

    It is not a long way from the demon who slaps your baby to the demon that is your baby. And what makes it even closer is the demon you have to be to your child. You look for treatment but you know it is management. And oh the things we are to manage! Teaching friendship was the greatest shocker for us. How is a relationship a friendship if it is taught? I have probably had the worst skills in approaching people (more on that on a future writing) but I cannot accept someone having to teach my son how to flirt, how to make friends, how to play...But there is only one way to see it and soothe the bitter ache. And this is what I set out to write about.

    Autism treatment sounds hard. All these different things you have to provide (speech therapy, occupational therapy, whatever else you find on the way...) are the easiest part, though. In this journey you know the destination. It is the normality you are seeking and this normality is deeply embodied in you. You want your child to be like you. Nothing original here. But the real difficulty is neuro-typical treatment. In all parent-child relationships there is a reciprocal evolution. We also have to evolve according to our children, we have to understand the music they are listening to, the sports they like, the friendships they make. When your child is autistic add to that the fact that you have to understand the life your child lives to a much deeper and fundamental level. What does relationship mean to your child. If not friendship, love, hate, then what?

    The label attached to our children makes that even more difficult. Autism, from the greek "αυτός", our children are labelled as people that are closed to theirselves. Therefore, the label implies that there is no reason to look and understand how they do relate. They just do not relate. And that is just wrong and unfair. Because if our relationships can be taught to our children, then they surely have the capacity for more than that and this capacity is used in a way we fail to appreciate. I do not mean to say that they are better. But the difference is not just in the mental aspects that gained so much interest in the context of the double exceptional and savants circus. The difference is also in the feelings and relationships aspect. Because as far as our children see us, we are the autistics, completely oblivious to the ways they want to relate with us, persisting on our peculiar behavioral demands with a passion that breaks their joy. The day we get the diagnosis our heart is broken. Our childs heart is broken for much longer and will remain so if we do not struggle to train ourselves to their way of joy as much as we struggle to train them to our behavioral obsessions. If they are to feel insiders somewhere, then this should be firstly our heart.

    (to be continued)
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