Book: 15 Things They Forgot to Tell You about Autism

For parents of children with autism, the best thing they could hope for when starting their journey is a friendly and somehow thoroughly knowledgeable voice which can give them advice and guidance. Now, such a voice exists in book form. Written by a local mum of twins with autism, Debby Elley, “15 things they forgot to tell you about autism” is a practical and gently humorous look at raising children with autism.

Mum of Autistic Twins Gives Easy Advice for Busy Parents

If you’re looking for autism information these days, you’ll be spoilt for choice. It wasn’t always the case. Twenty-five years ago, you’d be scraping around for parenting advice and would be lucky to find an A4 photocopied sheet illustrated with a rubbish selection of Clipart to ‘liven’ up the rather dull and patronising advice.

Nowadays, we have the opposite problem. To find information on any autistic trait, you can choose from a bewildering array of information in books, on websites, in forums, on blogs… it’s everywhere.

To use an old analogy, it’s great that we finally have our haystack, but it doesn’t make it any simpler when you’re trying to locate a needle in it.

I stumbled across the problem of information overload when my twins Bobby and Alec were diagnosed with autism 11 years ago. Faced with a vast amount of information, I didn’t know which way to turn. It also surprised me that there weren’t any parenting magazines in the UK focusing on children with autism. Instead, I’d flick through some American glossies on the subject, which often focused on causes and cures, interspersed with advertisements for dubious autism remedies.

As a journalist, it rankled that there wasn’t any impartial, practical advice. The tone of the information certainly didn’t reflect my upbeat personality. Why was it that everything on special needs was so very studious and serious? I hadn’t lost my sense of humour because I had autistic twins. Heck, I needed it more than ever.

That’s why ten years ago, speech and language therapist Tori Houghton and myself combined our professional expertise and personal experience to launch AuKids magazine in the UK. The idea was to wade through the jungle of guidance, select the best bits and translate them into digestible chunks for our busy readership. It was all wrapped up in a lively package of graphics and humour. The humour went down a storm. It seems that there were many parents out there feeling the same way as I did.

My first book, 15 Things They Forgot To Tell You About Autism, is an extension of those ideas that made AuKids a success. Its style is (hopefully) witty, candid and optimistic and it’s aimed at people who want to learn more about autism without committing lots of time to a technical read. I’m hoping that as well as the wider public, my core readership will be parents looking for a bit of hand-me-down wisdom from someone a little further down the line in terms of autism experience.

15 Things… is all the things about autism that I wish I’d realised sooner.

So, what did they forget to tell you about autism? One of my biggest ‘lightbulb’ moments was that autism isn’t set in stone. It changes and is mouldable like clay. The environment, people and other pressures contribute to how a person’s autism translates into their behaviour. The autism itself is here to stay, but the distress that often comes with it can be greatly reduced with a little understanding.

This brings me onto another lesson that I learnt over the years. To work with autism, you need to climb inside your child’s own universe. For too long there’s been an assumption that the most successful interventions are to do with ‘normalising’ autistic behaviour. Bright kids can learn to adapt their behaviour to suit the non-autistic world, sure, but it’s only a superficial change and what it teaches them is that they can’t be themselves if they want to be accepted.

In my chapter Your Place or Mine? I point out that if we’re to expect autistic people to try and accommodate our own world, we have to meet them in theirs, too – and respect it. Over time, I learnt to have a genuine understanding of autistic differences and I’ve never ignored them as inconvenient or irrelevant. It’s made a huge difference to my twins.

For me, the last decade has been about realising and accepting that there is more than one way of living life. I think above any parenting technique, acceptance of autism is what’s ultimately responsible for my twins’ happiness. The second strategy that has had the biggest impact is staying calm. Patience was a huge lesson for me, but it has reaped equally huge rewards. Autistic children have difficulty in regulating their own emotional temperature. If you keep your behaviour nice and relaxed (most of the time!), it very gradually teaches them how to do the same.

Above all, I want my readers to know that you don’t have to be perfect to be a good autism parent. You simply need to tweak your parenting methods, incorporate them into a daily routine, and do it enough of the time to be reasonably consistent. You’re allowed to be normal and have bad days. You’re allowed to be lazy and not do a thing some weeks. Autism parents put huge pressure on themselves to be ‘therapists’ with super powers. The best therapy, I learnt, was having a laugh with my kids and simply being around them when they wanted me to be.

I hope that mums, dads and other carers will come to think of ‘15 Things They Forgot To Tell You About Autism’ as a friend in book form. It’s been a real pleasure to pass on the lessons I’ve learnt – and if the proof is in the pudding, Alec and Bobby are both contented teenagers. At the end of the day, I couldn’t ask for more than that.

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