Co-editor of the not for profit parenting magazine, AuKids, Debby Elley has now written her first parenting guide, Fifteen Things They Forgot to Tell You About Autism: The Stuff That Transformed My Life as an Autism Parent. Here on our blog, she describes the book and its aims in her own words.
I’ll let you into a secret. It’s not really fifteen things, it’s a lot more. My son Bobby calls it Fifteen Things YOU TOTALLY MISSED About Autism, but the thing is, you’d be forgiven for missing them. No-one tells you what it’s important to know. You sort of find out the hard way. That is, with time and effort and sometimes a few tears.
Fifteen Things… is the sort of book that I could only write having amassed a decent body of evidence from my own experience of raising twins. It’s now 12 years since they were diagnosed and I’m one of those parents who can look back with the benefit of hindsight and tell myself where I went wrong. That’s no fun at all, so I thought that I’d prefer instead to tell those at the beginning of this learning curve where they can go right.
I’m hoping that people will finish the book and go away with a couple of insights that will shape their views. The first is that you can’t change a diagnosis, but you can shape your reaction to it. Having done that myself, I have found positive thinking the key to living in harmony with autism and I think it’s the thing that has underpinned all our progress from the moment we realised that our twins’ brains were wired differently.
The second is a point that I’m very fond of making. Autism is not a solid brick, although it seems that way when a diagnosis is handed over. Someone’s autism changes shape according to their interactions with the environment. Other people are a big part of the environment and so it follows that with some decent strategies and a good understanding of their experiences and difficulties, coupled with a calm disposition (most of the time!) parents – who are central to a young person’s world – can really help a child with autism to thrive.
What frustrated me when the twins were younger was the idea that a solution was out there, but no one was telling us. There is no big secret. There are simply a large number of small solutions and after many years of putting those strategies into place, I’ve seen first-hand how they can make all the difference. Sometimes, though, you have to wait a while before you see the benefit.
This book isn’t designed to be po-faced or patronising. God, I hope not. As I wrote in the introduction, humour is my trusty sword and I use it within those pages to axe through the traditional jargon and mythology that surrounds autism and to clear a path for others to tread along.
I hope that above all, Fifteen Things becomes a celebration of autism and a battle cry for parents everywhere to bring their kids out into the open without fear, shame or embarrassment. The more the world sees of autistic people, the more they’ll learn not only to accept it, but also to celebrate it.
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