Once a child is diagnosed as autistic, there is a long list of things the parent(s) will need to do. First, there’s all the paperwork involved post-diagnosis. Then, there’s the potentially taxing task of trying to get support in place for your son or daughter, but there’s another difficult thing parents will need to do at some point.
At any stage during childhood, on receiving a diagnosis, an autistic person may struggle to make sense of what it means for them. This is where a parent should be able to tell their child about being autistic. There are a number of obstacles to overcome when telling them, including:
- When and where to tell them
- What to say about their diagnosis
- What it means for them
- How to word it in a sensitive, non-scary way
Whilst it’s not a secret that must be kept until your child turns 18, informing your child of their diagnosis straight away could cause a little too much damage, particularly if it feels rushed.
The right time
It can be tempting to let your child know straight away. Getting it out of the way will save you a job later on, but it’s important to leave a little time, but how much? It depends on their age, as well as how they would prefer to communicate.
If they’re no older than eight years of age, it might be worth waiting until they’re able to understand what autism is. If they’re in their teens, it can be done within a few months or weeks, but not too hastily. Regardless of when you tell them, it should be at a time when they’re at their calmest and most content.
Your child has a right to know about their autism diagnosis. By leaving too late, you risk dropping a bombshell that could affect them well into adulthood. In informing them of the diagnosis, they’ll at least know of the reason why they see the world differently to their neurotypical peers.
As for the time of day, it should be done at home during a weekday evening, when school is out of the way and they have had their dinner. When everything else is out of the way, ask them politely if they want to talk to you. Then, turn anything making noise off, such as the TV or radio.
When telling them, try to word it as sensitively as possible, whilst explaining what autism is in a few simple sentences. If your child is aware of anything about them that’s ‘different’ like stimming, being sensitive to background noise or finding it difficult to make friends, relate those traits to their autism diagnosis.
Whatever you tell your son or daughter shouldn’t just be restricted to one chat. If they need to know anything, set aside some time to answer their questions. If they keep asking, it shows that they’re eager to learn more about themselves, which isn’t a bad thing. Being inquisitive is a positive personality trait, particularly in adulthood.
For the conversation, here are a few suggestions for topics to talk about:
- The trips to the diagnostic service
- Some of the positives of being autistic, such as attention to detail and honesty
- How unique autistic people are – we make up just over 1% of the population
- Famous autistic people who’ve gone on to achieve great things – singer Susan Boyle, actor/writer Paddy Considine and academic Temple Grandin are all great examples
- Persuading them to be themselves – they don’t have to change who they are for anyone
Educating your child
After breaking the news of your child’s diagnosis, the next step is to help them learn about their own condition. Luckily, there are many great resources out there for you to explore. Books, websites, apps, YouTube videos – there’s a wealth of information tailored to autistic children in different age groups.
Starting with books, they should be informative but fun too, in case your child isn’t feeling quite so positive about their diagnosis. Blue Bottle Mystery and the highly-relatable Of Mice and Aliens, both from Jessica Kingsley Publishers, are two titles that fit the bill.
As for videos, have a look at our What is Autism? page, or just search for terms such as ‘children with autism’ on YouTube and other video streaming websites. Then, you’ll find all sorts of short films to help your kids get used to their new-found diagnosis. The autistic blogger Purple Ella has created this excellent video about how and when to tell your child that they are autistic.
Apps are arguably the greatest means of helping your child to understand autism. Ones worth downloading for their smartphones and/or tablets include The Autism Discovery Tool and, to understand sensory overload (if they experience it), this VR one from the National Autistic Society.
The process of telling your child about their diagnosis is strewn with pitfalls. If you do it in a way that’s positive, supportive and tailored to their needs, it need not be that way. Find some useful info, be prepared to answer their questions and do it when they’re ready.