The two questions above are among the most commonly asked by parents of newly-diagnosed autistic children. And wouldn’t it be great if there were a one-sentence answer to it?
Sadly, it doesn’t work like that. But here’s my advice, as an autistic man who used to be an autistic child, who gets asked this question a lot.
Full disclosure: this is a rewrite of an article that I wrote five years ago (way back at the start of Autistic Not Weird’s journey – long before its Facebook page reached a six-figure number of followers [all links on ANW open in new tabs] and before my Patreon supporters allowed me to do this for a living), which I have since disowned because I no longer agree with it.
Apparently I wasn’t as autism-positive back then as I was now. But honestly, I believe it’s important to listen to people whose opinions have evolved over the course of several years. Lots of years of reflection have gone into this article, so I hope it helps.
So, the first question – when should you tell a child they’re autistic?
Opinions on this issue range between those who “don’t want my child to have a label” (a very problematic opinion which I’ll address below) to those who think children should be told pretty much on the day of their ultrasound. My opinion is neither.
Four and a half years ago, in the first version of this article, I believed it depended entirely on the individual. I still believe this. What works for one autistic person may not work for another, because (rather inconveniently for everyone else) we’re all different to each other – for the same reason that non-autistic people are.
So, as always with my articles, read the advice and apply it to your own circumstances however you see fit.
What I will say though, is that I used to believe that if a child had a positive level of self-esteem, was happy being different and didn’t need to know about their autism, it was best to leave it until they did. This has changed.
I no longer believe there are good reasons to avoid telling a child about their autism, and I believe that hiding the news can cause more problems than it solves. This is, of course, as long as the news is delivered well (more on that later) and as long as the child is emotionally mature enough to understand the explanation.
(Oh, and if the child isn’t emotionally mature enough, it’s a better idea to simplify the autism explanation than avoid explaining it altogether.)
I have three main points I wish to make, followed by a nice Carroll diagram at the end.
1. A quick response to those who “don’t want their child to have a label”.
The word “label” is quickly becoming one of my least favourite words in the English language. (My least favourite of all is “inappropriate”, because it’s never been entirely clear to me what it actually means.)
Seriously, the amount of people whose main reason for not seeking a diagnosis because of this reason – and those who really did want a diagnosis but were discouraged by relatives/friends who used this reasoning – is very disheartening. Sure, there’s a generation of autistic children going through life without an explanation for their struggles, nor services or accommodations to help them with those struggles, but at least they don’t have a “label” whatever the hell that’s supposed to mean.
Except, they do. I’ll let this picture do the talking.
And yes, this picture is more about getting a diagnosis in the first place than not telling a child they’re autistic, but there are parallels here. The autism explanation grants an autistic child the right to not think they’re stupid, or naughty, or lazy, or incapable.
2. Tell your child they’re autistic when it benefits them.
Why is the word “them” italicised? Because it can be easy to fall into the trap of persuading ourselves that it’s the right time (or not the right time) to tell a child based on how it feels for ourselves. This can result in:
- Telling a child the moment you find out they’re autistic, before you’ve taken the opportunity to explore for yourself what it means (and as the person “breaking the news” to them, you serve them better by growing your own understanding first).
- Or, more commonly, not telling a child who is ready to learn about themselves because you are not personally ready for it.
Autism can be a tough subject to discuss, especially for those who have yet to make peace with it or understand what it means for a child and their family. But remember that the person who needs to understand autism the best, the most thoroughly and the most positively, is the child themselves.
3. And finally, make sure they’re among the first to know.
I once heard from a parent who was extremely hurt by her son’s school. Since he was struggling and had recently received an autism diagnosis, his teacher thought it would be a good idea to give the whole class an explanation about autism and why he struggles.
Which, in principle, is a good idea. Or would have been, had it been discussed and negotiated with the boy’s family, other staff members, and (most importantly) the boy himself.
But no, this was done before the mother had had any reasonable opportunity to talk to her son about his autism. (Because of course, sometimes it may be appropriate to wait before revealing their diagnosis. If that’s your decision though, bear in mind you’re just not telling them yet.)
Long story short, this boy’s entire class knew about his autism before he did.
As I said in my previous point, in all matters regarding a child’s autism, it is the child who takes priority. And this includes basic information governance, like who gets to find out (beyond those who have literal responsibility for them, of course).
In conclusion, here’s a diagram to illustrate the advantages and disadvantages of each action. Feel free to pick and choose which points are relevant to your situation. (Note that the right hand column does not say “not telling your child”, but rather “delaying telling your child”. Because that’s what it is, realistically speaking.)
|Telling your child they’re autistic||Delaying telling your child they’re autistic|
|Advantages||1) Your child most likely already knows they’re different, and it’s healthier to have a word for why.|
2) As your child grows up they will need to self-advocate. The more they understand their own needs, the better they can do this.
3) If a topic is openly discussed, there’s no stigma or shame.
|1) Avoids a conversation that you may personally find tricky.|
2) Avoids the “labelling” issue (for better or worse, as discussed above).
3) May prevent the child from thinking they’re “defective” (although this is only the case if it’s either explained badly, if the child has already been led to believe that autism is a negative, or if the child has very low self-esteem).
|Disadvantages||1) The possibility that they may start using it as an excuse, which I address in this article here.|
2) It could affect their self-perception negatively. (In all fairness, this happened to me. For a little while, anyway.)
3) Honestly, I used to think there were more reasons than this. But now I’m struggling.
|1) Every autistic person’s first priority is making peace with themselves. Withholding crucial information about them can be damaging to this.|
2) It’s unlikely to help the child if they’re not given an explanation for the differences they already know they have.
3) There are moral issues around keeping a child in the dark when everyone around them (teachers, professionals, family members) are seen as having an automatic right to know.
4) One day they may find out, and wonder why the information was kept from them. Their natural assumption will be that their autism was something to be ashamed of.
Ok, I’ve decided to tell them. But how do I do that?
Before I go further, most of this section is written on the assumption that the parent is having a specific ‘breaking the news’ discussion with their child. But plenty of my friends with autistic children have told me that:
“Well autism’s never really been a secret in this house. We’ve always talked about it openly so our child learned about it early and has just always accepted it.”
If that works for you, use that.
As for how to ‘break the news’? Two important words: make it positive, and make it personal.
Why positive? Because the first thing anyone learns about autism is that it’s “supposed to be a bad thing”. (I personally disagree, but then again I’m only a real-life autistic person and a tutor for autistic students, with personal and professional experience of autism ranging from academic high-flyers to those with profound disabilities, including 34 years of having an autistic brain myself, so what do I know?)
So with that in mind, being cuddled up to your child in tears apologising for this demon that’s taken over their body is not likely to help them grow up with a positive self-esteem.
Of course, don’t fake the positivity. Because (leaving aside the fact that your child will probably sense the insincerity) there really are positives with regards to autism that don’t need faking. Equally don’t fake the lack of struggles either: as I often say, true autism awareness means being open and honest about the negatives but not letting them dominate the discussion.
And secondly, make it personal.
Your child will be far less likely to positively accept (or even understand) what their autism means if it’s described as a cold, tick-box list style of symptoms, or like a metaphorical box they’re supposed to fit their identity into.
For each autistic trait they have, find a personal example of how it applies to them. For example,
“You know how you’re an expert on keeping facts in your head, but you find your teacher’s hints difficult? It’s because your brain processes things differently.”
“This may explain why you find bright lights and loud noises difficult to cope with, but also why you’re so creative.”
Thinking of real-life incidents and memories can help too, e.g.
“Sometimes it can be difficult to know how somebody else is feeling- remember the time when I shouted to you because you were far away, and you thought I was shouting because I was angry with you?”
And a few extra bullet-points:
- Choose a time when they’re calm and open to listening. As tempting as it may be to give them the explanation while they’re in tears after a meltdown, it’s most likely better to wait until their view of the world around them is comparatively calm.
- Explain that autism means they think differently to other people. Differently, not wrong.
- The wording we choose often has an impact too. It’s better to explain that certain things “take a little longer to learn” instead of “things you can’t do”, for example.
- If your child has examples of things they can do that their neurotypical classmates can’t (for autism-related reasons), use these as example for how their differences are not necessarily bad. Common examples may include incredible attention to awesome hobbies, an excellent memory, intense compassion, or a logical approach that helps them solve problems.
- Be positive, but don’t lie/exaggerate to them (e.g. “you are destined to be the next Albert Einstein.”) Find a balance between giving them reasons to be positive about their brain and not glossing over the challenges they face.
- Finally, you might not even need a full and long discussion about it. Your child may accept what you’re saying quicker than you think. The conversation should be as long as it needs to be, no longer and no shorter.
Of course, take as much insight from this article and ignore as much as you want, depending on the particular needs of your child. The absolute best way of talking to your child about autism is meeting their own individual personality, and you will be the one who best knows how to do that.
And that’s it!
I hope this article helps those who read it: again, I felt it important to rewrite it on the back of four and a half years of reflection on what it means to be autistic and how positively our identities deserve to be approached.
For those who want to join Autistic Not Weird’s Facebook community, it’s right there behind the link. And since writing for Autistic Not Weird is literally my job now, here’s a link to my Patreon page for those who want to help me keep doing this for a living (in exchange for various rewards).
Take care, and all the best to you and your child when the conversation comes.
Chris Bonnello / Captain Quirk-
Underdogs, a near-future dystopia novel where the heroes are teenagers with special needs, is soon to be released through Unbound Publishing. A character-driven war story which pitches twelve people against an army of millions, it balances intense action with a deeply developed neurodiverse cast.
Chris Bonnello is a national and international autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).
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