In the short time that I've been a member of this exclusive little SEN club, I've met a vast variety of parents from all different walks of life. What remains constant throughout all of us, aside from the obvious, is a real fear of labels. Not one of us is truly at ease with the idea of slapping a sticker on our child's forehead that says "Autistic", "ADHD", "GDD" etc, at least not in the beginning. Why is that? Well, why would we? When the mainstream world we are sending them out into does not bend, adapt, or understand anyone who does not fit its socially accepted mould nearly enough.
I didn't think we had any ASD children at my school at the time. Looking back, I realise they were just labelled as the naughty kids, the ones who "just didn't want to be there" or "didn't respect the teachers", or worse, "the weird ones". Autism in our mainstream media has been so widely misrepresented if seen at all for so long that when I've told older members of our family that Noah is on the spectrum I hear "Oh what a shame." My brother suffered horrendous bullying all through his school years, so I am well aware of how cruel other children can be. It was something I was acutely aware of before Noah was even born. I wanted him to be liked, to have friends, and be happy. When it became clear that there was something different about him, my fear that he would be bullied like my brother ramped up massively. I didn't fully understand his Autism, how could I expect other children to?
This fear came to fruition one morning standing in the queue for pre-school. A child and his mum were waiting behind us and I heard the little boy call out "Mummmm?". I don't know what made me look, but I locked eyes with the little boy who instantly bit his tongue and stared back at me like he'd been caught out. I looked away, and then I heard it again, quieter this time, "...muuum?.." he said, "HE eats PLAYDOUGH!" and pointed at Noah. Instead of seeing an opportunity to say something about not judging others or how some people are a little bit different, the mum just said "Oh." I feel how petty and paranoid this all sounds, but my heart sank. I really felt like I was listening to Noah's first bully. The first of many I would have to defend him from. He may have only been 3, but someone in his life has taught him to look down on people who are different or neglected to teach him anything about kindness. I suppose that's the crux of the fear really, people are just downright unkind, and so many parents are resistant to getting a diagnosis for their child. In reality, though, no label means no help. Our mainstream school system has a one size fits all attitude, an educational standard that for some children is as unattainable as the airbrushed skin in a makeup advert. Without a label, that standard is just expected of them, and if they can't meet it, they're classed as a failure, a naughty child, the weird one.
So, we parents have to put our resistance to one side and fight for the diagnosis our child needs. We don our armour, and weed-whack our way through their childhood, clearing the way and protecting them from as much danger as we can. I'm a firm believer that the best form of prevention is education, which is why I've recommended a couple of books to family members and friends with Neurotypical children because understanding is how we change the negative stigma around ASD. For adults - "The Reason I Jump" - By Naoki Higashida, a non-verbal Autistic Japanese man who wrote this when he was 13.
For children - "The Abilities In Me" (Series) by Gemma Kier. Give them a read, educate yourself, and pass it on.
Learn, Share, Educate. That's how we change the world.
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