How and when to explain an autism diagnosis to my five-year-old

[Anymoor]

my daughter has just turned 5, so young for her school year. She had a diagnosis of autism while still at nursery (4) and had an EHCP done when she started school. She loves school but struggles with reading and writing but is very hyper focused on her interests and can tell you facts on space and history that are very detailed. I suspect she is dyslexic. She struggles with melt downs and emotions.

we have not specifically told her she is autistic as it has never come up. Yesterday she was wearing a sunflower lanyard (given to her by a play worker at nursery ’to help people understand that she likes to look closely at things to understand’ while at a museum and another visitor (a young adult) asked her if she had autism and started taking to her quite intensely about it. I chatted with the boy and my daughter didn’t really pick up on the autism part, we just chatted about how friendly he was and it was nice to have a chat. But it has made me realise that I need to talk to her about it. I don’t want to label her in her head or make her think she is different in a negative way. I am also worried that she will start to struggle in year 1 in September as she is significantly behind her peers with reading etc but just hasn’t realised yet.

any advice for how/when to have a conversation? I don’t want it to become her personality but also want her to be aware?

there is also a lot of negativity about too many diagnosis at the moment and it makes me conscious of people judging her.

When any of her behavior reflects Autism, such as repetitive behavior at that time when stopping her, you can make her understand what autism is and how we can manage it to control the severity of the symptoms.

My DS is ADHD and ASD, he’s 7.

i didn’t want to sit him down and say your this, you’ve been diagnosed with this.
the dr told me to approach it as pp has said, when he does something autistic or adhd. This is for all types of behaviour that comes with being ND. So not just when needing to correct her.
so for example her special interest being space you can tell her being autistic makes this subject so interesting for her and she’s able to gather all the information etc

he now comes to me and says which side of my brain was that.
he took it really well, granted doesn’t understand the extent but he’s really interested in others who are also autistic adhd.

I keep it upbeat and positive.

Thank you both, not sure why I feel it is such a big thing, I just don’t want to mess it up or cause her worry

I'd encourage you not to relate it to his behaviour at all. Instead, I'd encourage you to talk about the diversity of people in the world and how different people think differently. Get books about autism and autistic kids and adults. There should not be a 'sit down, I have something to tell you' conversation, but just a normalisation of the idea that different people think differently, have different strengths and weaknesses, and need different kinds of support - and that it's all ok. This should open up thinking and conversations, and eventually, he may come to you and say, 'ah, that sounds like me - am I autistic?' At which point, you can just say 'yes'. The problem for parents and children is when they're first given a diagnosis, and then need to find out what it means. Do it the other way around.

Ditto for dyslexia!

It feels a big thing, because it is. You’ll know which way to take it with her.

I couldn’t give him a book about it prior to saying anything to him as he just wouldn’t be interested.
we found it best to talk about it as when something happened.
I also felt he had the right to know and waiting for him to ask me if he’s autistic just feels abit wrong.
each to their own though.

Sorry, OP's child is a girl - I got that wrong in my post, though I don't think it changes my advice. Much depends on the age and the individual child, but 5 is still very young. A child in later primary school may be able to form a view about whether to tell their friends or the whole class they're autistic, but at 5, depending on the child, she might just go around announcing it to everyone without them or her knowing what it means, but the label can stick. It's always tricky to know with these things, but I think you could try to promote awareness about the specific issues without the label for now and see how that goes, while also talking about neurodiversity . I think calling each specific behaviour autistic or not reduces their personality to autism. My son hates that.

@LimeSqueezerTheir so interesting aren’t they as my son loves to know and I wouldn’t say it’s reduced his personality. If anything I feel his confidence has grown. But this just shows how different everyone is.

theres quite afew ND children in my sons year and their all open about it within class. They are going into year 3 though, it definitely wasn’t the case in reception, it is young.

it is very tricky

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