Interview by Maura Campbell, Spectrum Women Features Writer.
I just blitzed through the book I wish I could have read when my son was diagnosed with autism eight years ago. Fifteen Things They Forgot To Tell You About Autism, penned by Debby Elley, one of the driving forces behind Aukids magazine, was published in April and is already attracting great reviews.
I can see why.
Debby’s book is packed with helpful advice and practical tips based on what she’s learned over the years as a mother of twin autistic boys. It reads like a conversation with a wise and trusted friend and is in turn moving and wickedly funny.
Debby’s deep love and absolute respect for her 14-year-old boys — minimally verbal and sensory-seeking Alec (who reminds me so much of my own son every mention of him made my heart swell) and the hyperlexic, pioneering Bobby (who has definitely inherited mum’s sense of humour) – shines through in every page. This is Autism Parenting Done Right.
I caught up with Debby to ask her about some of the key moments and wonderful insights in her book.
I love how you came up with ‘Autism Sundae Dessert’ as an alternative to ‘Autism Spectrum Disorder’. Where did that idea come from and how do you use it to explain autism?
As co-editors of AuKids magazine, Tori Houghton and myself have always enjoyed finding creative ways of explaining aspects of autism. The phrase ‘Triad of Impairments’ had always bothered both of us, because of its negativity. I remember the day we came up with the autism sundae dessert. Like all our best ideas, it was a real mixture of input. Tori suggested that Neapolitan ice-cream worked well because it had the three elements of the ‘triad’.
From there, we played with the analogy, adding elements to the ‘sundae’ to explain various aspects of autism. So, sensory issues became ‘chocolate sauce’ because they covered the main aspects of autism. A Flake (so-called ‘challenging’ behaviour) wasn’t part of the sundae but could be added or taken away according to the environment. Sprinkles were the positive elements of autism. The best aspect of the sundae, I feel, is that it explains autism as something that is changeable in nature. The ice cream scoops change size according to different individuals and their environments. The triad to me was a very rigid definition in comparison.
I think like many good ideas, we didn’t realise quite how successful the Autism Sundae Dessert would be until after we’d printed it. Tori and I both agree that it’s the best feature we ever worked on and we’d love to publish a book for children and teachers on it because I believe that successful peer training in autism is the way forward. One of my main concerns is that autism isn’t adequately — or positively — explained to the people affected by it or to those around them.
One of the main themes in the book is about keeping a positive perspective – not to mention a sense of humour — and helping others around you do the same. Can you give us an example or two of how that works?
I’ve just always had this daft nature, that I tend to see the funny side of things. I think humour is really under-rated — it gives you power over any situation. For instance, I noticed my husband’s electric shaver in pieces earlier today. I posted an image of it on Facebook, saying that Alec’s weekend project had been creating a fantastic puzzle for Daddy to solve on his return from his golfing weekend. I don’t know, I could have despaired that Alec had done this, but what’s the point? He’s done it anyway! And actually you had to admire the fine motor skills involved!
A sense of perspective I think is easily gained if you focus on your own family and your own kids, not on what everyone else has got. It’s about choosing to live your life your unique way, rather than treating it like a price comparison website. It’s about judging success not in terms of academic credentials, trophies and promotions, but by happiness. Humour helps you gain perspective, I suppose.
I think also if you see behaviour as a natural part of someone’s autism, you’re far more likely to have a positive perspective on it than if you see behaviour as a depressing example of how ‘faulty’ your child is. My belief is that if you accept and work with autism rather than against it, you’ll always keep perspective.
Your descriptions of how you weave learning seamlessly into everyday activities were really useful. I love the idea of education by stealth — you’re like the teaching equivalent of a ninja.… Why do you think that approach works so well?
Well that’s very kind of you but I think basically this came from not wanting to be a therapy mum! My kids used to switch off every time I tried to teach them things in a formal way. Again, co-editor Tori Houghton, a speech and language therapist by profession, has been instrumental to my learning in this respect. She’s the one who taught me to look for opportunities in the every day. Many moons ago, I did a postgraduate degree in personnel and training. The training element of that convinced me that people only learn when they are properly engaged and having fun. To engage autistic kids, you have to take the lead from them — there really is no other way. It was a case of wasting my time, or mucking in with them, so I chose the latter.
You make the point throughout the book that autism is not a ‘solid brick’. What changes have you seen in your sons over the years?
Blimey, loads. When Bobby was a toddler, he wouldn’t look at you, had no language and was extremely repetitive. Now his language is only limited by the fact that he’s a moody teenager. He is thriving in a mainstream secondary and relates to people really well. I’m most proud of the fact that he reads and interprets emotions accurately. Alec has changed from a kid very much inhabiting his own world to one who is thoroughly engaged with our world now. He relates to people, he shares thoughts and he shares jokes. And now we have the thrilling adventure of verbal language emerging, too.
I thought you made a really interesting connection between intense interests – which you refer to as ‘specialisms’ rather than ‘obsessions’ — and teaching conversation skills. Can you explain a bit more about that?
If you’re following a child’s lead in order to engage them, the logic is that when they talk about their ‘specialism’ this is yet another opportunity to follow their lead to develop conversation skills.
There is some stuff written about autism that I find plain dumb, and one thing I read was to teach social skills by asking an autistic child to limit their ‘obsessional’ talk to a certain time of the day. Durh! My point, made in the book, is that if your kid wants to talk about Pokemon a lot, then let them, but teach them basic conversation rules so that their ‘specialism’ becomes a training ground. I think quite a lot of parents switch off when listening to ‘obsession’ talk, or they just nod and say ‘Yes…yes…oh really…’ without really listening. If I don’t understand something Bobby has told me, I tell him he needs to slow down and remember that I don’t know as much as he does. I’m not going to humour him by pretending I get it when I don’t. With this technique he’s learnt a lot. When your child is highly motivated by something, you have to make the most of that opportunity!
You talk in the book about respecting your boys’ individual needs and picking your battles. How do you decide which issues to work on with them?
In my head, I’m always thinking ‘Will this get in the way when they are twenty?’ I’m imagining the day that I’m not around to interpret for them. So if the answer is yes, something is interfering with their functioning, or preventing independence, that’s something I focus on. It’s just a stretching exercise, taking where they are at and gently extending their abilities over time. I don’t make a daily to do list or anything and I try not to put pressure on myself or them by making targets. At the end of the day, they’ll get there when they are ready. The biggest issues are ones that if not nipped in the bud, could cause serious problems further down the line.
I thought you made a very important point when you said “our children are constantly learning that being themselves isn’t quite good enough”. I certainly recall that when my son received his diagnosis, everyone around us spoke about it as though it was all bad news. What one piece of advice would you most like to give to parents of a newly diagnosed child?
I’d tell them that their child had a brain that worked differently — it’s not faulty, it’s just built differently. If I could wave a magic wand, there would be a great effort to change the messages that parents are getting subliminally through the diagnostic process. I think that the entire way that you parent an autistic child is shaped by the very first messages you receive when you’re told they have autism. We have to recognise that and help parents to feel positive right from the start. I’m pretty annoyed about it actually! As I said in an article on this recently, we have to show parents both sides of the same coin rather than make them feel as if their precious currency has suddenly been devalued.
You do a lot of myth-smashing in the book. Which sacred cow would you most like to slaughter and why?
Ooh goody! I think it’s the myth that autistic people don’t have empathy or don’t feel things as strongly as everyone else. People really need to understand that autistic people can have a difficulty in interpreting what they’re seeing and linking it to people’s emotions. So, for instance they may realise that someone is feeling sad but not link it to the vase that they have just dropped and smashed. It isn’t lack of feeling and empathy, it’s difficulty in interpretation. I think this one makes me most angry because people on the spectrum work incredibly hard at interpreting.
The final chapter of the book is entitled ‘Only Autistic People Have the Answers’. What is the single most important thing you’ve learned, as a parent, from autistic adults?
I think it’s that there’s a logic to everything they do and that it’s always a coping mechanism for what they’re experiencing.
How has parenting Alec and Bobby changed you as a person?
In lots of ways. It’s made me more patient and more accepting. I come from quite a high-flying family but it’s taught me to see success in very different ways. I don’t want to sound soppy or anything, but really it’s taught me what it means to be human.
You’re a great writer and all that, but I have to say the highlight of the book for me had to be the collection of ‘Bobbyisms’ that popped up throughout the chapters — the sprinkles on your Autism Sundae Dessert, you could say. So, my final question is this: when is Bobby’s book coming out and how can I pre-order it?
Ha ha! Bobby’s Bobbyisms are really funny. He makes me laugh every day. I do have a collection, but it’s really up to Bobby…he calls everything about his younger self ‘cringey’ at the moment, so I’m not sure he’d agree to this, but I’ll certainly look into it! As Bobby’s insight matures, I’m hoping that eventually he will be able to write about his experiences, too.
Debby Elley is co-founder and co-editor of the award-winning Aukids magazine. She lives in Cheshire, UK.
Fifteen Things They Forgot To Tell You About Autism is published by Jessica Kingsley Publishers.