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
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
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
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”.
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).
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
Telling your child they’re autistic
Delaying telling your child they’re autistic
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).
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
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
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.
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.
Underdogs, a near-future dystopia series where the heroes are teenagers with special needs, is a character-driven war story which pitches twelve people against an army of millions, balancing 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). Autistic Not Weird on Facebook