Two specialists offer their top tips for parents preparing to tell their child about his/her autism diagnosis.
“I think we need to tell our son about his autism, but we aren’t sure what to say.” Does this sentence sound familiar? Parents can be downright terrified of the “talk”—and it’s no wonder.
Autism is complex and the language around it is confusing. When you factor in a child who may have high anxiety and almost certainly difficulty processing verbal language, it isn’t surprising that parents and carers can feel daunted.
Here are seven tips to help you:
1. Understand autism
You don’t need to understand everything there is to know about autism; with 30 years’ knowledge between us, we’re still learning! The starting point for you should always be your child. Seek to understand certain aspects of his/her behavior that may strike you as different or confusing.
We know the first thing you’ll want to do is look on the Internet. Please be aware, though, that it carries lots of conflicting opinions. Many who write about autism also have a hidden agenda—a political point to push or something to sell. Look for information written by charitable organizations or renowned professionals such as Tony Attwood.
When choosing a book, look at it first on your own before you share it with your child; otherwise, you may suddenly encounter a page you don’t like. Also, thoughts may crop up as you’re reading on your own that are later handy when sharing the book with your child.
Our book, The Ice Cream Sundae Guide to Autism, was written with both parents and children in mind. It started out as an article that provided a simple explanation for parents who wanted to describe autism to their families. Once it became popular, we wrote a children’s version. The book will help you identify the ingredients everyone has to varying degrees when it comes to autism, and those some have and others don’t. Children can design their own, making sense of where they fit into the bigger picture.
2. Explain autism as a collection of differences
It’s very easy to focus on autism in terms of impairments. In fact, this has traditionally been the way in which autism has been described—as a “triad of impairments” (language, social interaction, and rigidity of thought).
The worry that autism causes parents when it first becomes apparent can lead to feelings of concern when “translating” it to their children. With views further shaped by the negative language often surrounding the condition, it’s no wonder some parents feel in no place to be positive.
The truth is, autism is a condition with many upsides and downsides. Your job, when you are explaining it to your child, is simply to refer to it in terms of differences, some of which he/she may find helpful or not so helpful. Some may be both at the same time.
In our book, the language about autism is neither positive nor negative—it’s neutral. For instance, if you have trouble “reading” how others are feeling (or being a ‘people detective’ as we say in the book), the chances are your brain will be rather good at learning about the things you like instead, because that is where its energy is focused. Or, you may not see the ‘bigger picture’ in context, but can spot details others would miss. Spoken language may be hard for you to digest, but the flipside is you could be extremely good at remembering visual information. These are valuable and unusual skills.
3. Encourage your child to see his/her autism in context
We’d like to share with you a secret.
Autistic “impairments” never exist in a vacuum. They are the result of neurological differences combined with a person’s environment.
Yes, your child is different. Whether or not these differences cause him/her to be impaired depends very much on his/her surroundings and how other people—including you—can adapt around your child.
Autistic children can thrive in the right conditions. So when explaining autism to your children, make sure they understand why they may feel fine at home but not okay in other places. Autism simply affects them more when there are more demands on their brains. Knowing this is very powerful, because it means they can learn about the environments that suit them best and their difficulties become less bewildering.
4. What we don’t know naturally, we can learn
One key message to get across to your child is: what you don’t know naturally, you can learn. In our book, we use the concept of a spoon as a way of illustrating assisted learning, which is used to scoop out some ice-cream.
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5. The autism conversation grows with your child
When Debby’s son Bobby was six, they had their first conversation about autism. Debby said: “You’ve got a brain that works a bit differently, because you have something called autism. That means that your brain can work very fast with some things but needs a bit of help with other things.”
Autism isn’t a “sit-down talk” in the same way as sex education. Autism is far better understood if the conversation grows with your child. Keep the language simple at first and add more detail about ‘why’ as your own understanding—and his/her ability—grows.
6. Use ‘distancing’ language
A Canadian speech and language pathologist, Heather MacKenzie, taught us that using “distancing” language helps children take information less personally. For instance, a phrase such as “Because of your autism, you might struggle to pay attention,” can easily harm a young person’s self-esteem. Rephrase it: “Because of your autism, your brain sometimes struggles to take in a lot of words at once, but if we write them down it helps your brain a lot.”
This allows them to take a bird’s eye view of a difficulty and not become quite so emotionally involved with it. Notice, too, how we always pair the difficulty with what can be done to help.
7. Use solid, not abstract examples
We’ve always said that although we’ve written a very nice book to give you the right language to use when talking about autism, autism is best explained ‘on the go’ in the context of daily life. This is because it’s much easier to talk about when you have an exact example in mind, rather than as some abstract notion.
So, for instance, if your child is struggling with a change, you could say, “Hmm, you know why you are finding this hard? Your brain doesn’t like it much when things change, that’s part of your autism. But, if we give you lots of warning and tell you exactly what to expect, your brain finds it a lot easier!’
Explaining why he/she finds something difficult and what you can do about it means that, as he/she grows, he/she will instinctively know there are always strategies available to help. Eventually, he/she will start to use these strategies autonomously. That’s what autism and independence is all about—understanding it’s part of you, and how to accommodate it.
A final word
Some parents are concerned that if they are too accepting of autism, they won’t be able to help their child to overcome some of his/her struggles. In fact, it’s the opposite. As a speech and language therapist, Tori found positive parents were the ones who saw the most progress. Great progress is about spotting the small communication signals your child is giving and building on those. The focus isn’t on what’s lacking, but on what’s already there that can be built on.
We’ve found that if you work with autism, rather than against it, you’ll get far better results.
This article was featured in Issue 112 – Understanding Diagnosis & Disorders