Seeking Diagnoses – A perfect child in an imperfect world

I came across piece of writing this the other day when I was looking for a photo on my Facebook page. I wrote it 5 years ago after we had an initial consultation with my son’s wonderful paediatrician. He had told me my son was autistic but because the path of diagnoses had recently changed we would have to be referred to the areas autism assessment team as he was longer allowed to diagnose on his own, (he was about to retire and had diagnosed many children in his career and was, and still is, the most knowledgeable professional I have met regarding autism).

I had been on the waiting list maybe a year at the point I wrote this, my son was eventually diagnosed in July 2016 with ASD (autism spectrum disorder) using the PDA criteria as nothing else quite fitted. Anyway because of the paediatrician’s certainty I felt confident to open up a bit to people about what was happening and the likely diagnoses.  I immediately regretted that though as everyone seemed to have an opinion about it from ‘Why would you label him’ to ‘He looks fine. there is nothing wrong with him’.

I had soon had enough and, being a person who likes to put her cards on the table, I wrote this and posted it to my Facebook page. Things were a lot quieter after that…

December 13, 2013 at 9:57am

To All those who ask me why I seek an Autism diagnoses for my son as there is ‘nothing much wrong with him’..

I say true. There is nothing wrong with his high intelligence, his total honestly in all situations, or his sensitivity. The musicality he expresses and can let out at any time is a joy. Nothing is up with his reluctance to make small talk or need to know someone well before he has trust. His fear of unknown things is a natural response, it is good to have routine and we all like the familiar. The world IS a big, loud bright and scary place. Things do look better when neatly arrange and having order makes sense of things. Nothing wrong with being discerning or needing things to be just so, don’t we all strive for perfection? His focus on things is admirable and will most probably lead him to a field of high expertise, he could be leading light in his field one day, why should he feign an interest in things he has no interest in? I have no problem with his disregard for social convention, who made up the rules anyway? There is certainly nothing wrong with the way he is always and absolutely himself.

No there is nothing wrong with my son, in fact he is perfect in an imperfect world but I need him to have a diagnoses so society can allow him to be and not try to mould him to fit in with the ways of the masses when he can’t. To stop making him always try to see the world through their view-point and to take time to see it from his instead. To stop putting him in situations he finds unbearably loud and bright. To explain to him about unfamiliar things and reassure him that it will be ok. To understand that when he screams, or hides or refuses there is always a good reason. To have a reason to tell people not to force him to try to be anything other than himself so he stops coming home so upset and confused that he pummels me with his fists and screams…

Even with a diagnoses he will still be misunderstood and have problems with other people’s inability to accept difference, he will most likely be bullied at school and at work. He will find the modern world daunting and confusing at times..

So I say to you what is wrong with this world that my son needs a diagnoses just to be accepted as himself?

4 thoughts on “Seeking Diagnoses – A perfect child in an imperfect world

  1. This is brilliant, I love it xx

    Liked by 1 person

  2. Nothing wrong with your son at all. It’s the world which needs fixing, and we can just plug away and keep trying to change it x

    Like

    1. That’s my plan and with so many other wonderful parents like yourself and autistic advocates doing the same it has to happem.

      Like

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