Being told your child has autism -This is family

Posted on 25 May, 2022.

I’m a talker, I wear my heart on my sleeve. But when you suspect your child has autism – and don’t yet know – it can be hard to talk about. You don’t want to give them a label, especially if your suspicions are wrong!

What does it feel like to be told that your child has autism? For a label to be placed on something that you had been wondering about for so long? One mum shares her story. In the hope that any other parent in the agonising limbo, waiting for a diagnosis, feels less alone.

How does it feel to be told your child has autism?

Honestly, I don’t quite know. And I’ve just been told this 3 days ago.

Just like every family is different and every child is different, everyone’s experience of getting an autism diagnosis will be different too. But I thought I’d share my experience so far, in case it helps anyone else on this long and winding road.

For me, it feels like we’ve been on this journey for a very long time. It feels like we’ve known the answer deep down for a long time. But in reality it was only about 5 months ago that the GP suggested autism may be the reason behind my son’s challenging behaviour. Sure, we’d spent the past few years questioning if there was ‘something’. I’ve lost count of the number of times I’ve Googled autism signs. But it hit me like a ton of bricks when the GP actually said it. (She suggested it, she didn’t make a diagnosis).

Wanting to talk, but not wanting to label

I’m a talker, I wear my heart on my sleeve. But when you suspect your child has autism – and don’t yet know – it can be hard to talk about. You don’t want to give them a label, especially if your suspicions are wrong!

I think that’s the same reason I had refrained from raising the problems sooner. When he was a baby we felt he was ‘different’ to other babies around us – but hey, we’re new parents and meant to be loving every minute! When he was two his behaviour was extremely challenging – but that’s why it’s called the terrible twos right?! And then the troublesome threes…

OK, by three we were crying out for help, but our concerns were brushed aside by the GP and health visitors. They said he’s too young to diagnose behavioural problems, he’s still developing, we can’t refer to CAMHS (Child and Adolescent Mental Health Service) until he’s six. SIX!!

A trip to A&E and the catalyst for change

The real catalyst for getting any sort of help was when social services got involved. (The aggressive behaviour towards siblings had resulted in a couple of trips to A&E – the first time they laugh it off, the second time they report you.) But in a funny sort of way that was the best thing to have happened. Now we were listened to, now we were given help. The GP took us seriously and made a referral to a developmental pediatrician. We were given a family support worker, and regular meetings started taking place at school with a team of healthcare professionals and the headteacher.

It would be so easy now for me to jump right to the point where we got the diagnosis. But I’m not going to do that – and let me tell you why.

little boy covering his eyes

An eternal limbo of uncertainty

The part where you know your child is on a different path to others is a weird part. It’s been suggested to you that they have additional needs, but you do not yet have a diagnosis. And this is a part where I have done a LOT of Googling, but I don’t find many people talking about. People tend to talk about the part where they’ve been diagnosed onwards. (Perhaps with the odd retrospective ‘I always knew there was something’ thrown in).

This is the part where you are constantly looking for signs. Constantly Googling. Where you’ve been told to make notes, keep diaries, go on courses to find out more – but you still just don’t know. So you have days where your child’s symptoms are less clear – or actually just not there. And then you beat yourself up wondering if you’ve got this whole thing wrong? It’s the part where you go from thinking ‘My child definitely has autism’, to ‘Actually I think it’s ADHD’, to ‘No – all kids do x, y, z sometimes and we’ve got this all wrong’.

little boy playing with bricks

It’s a lonely limbo too

It’s also the part where you are still living with your daily struggles, and still feel unable to talk about it. You don’t feel able to join support groups. And you also don’t have that ‘reason’ to explain to others why things are the way they are. This is a lonely and confusing part.

It is also a part that you know will be long (unless you go private), but you have no idea how long. That massively adds to the frustration.

So I wanted to write this to anyone who is in this eternal, uncertain limbo. You feel alone, but you are not. People don’t talk about this part, but one day when you find the courage to start talking, you will realise that there are many, many other families going through similar (albeit unique) experiences. And once you start talking to other parents, you may realise your children do exactly the same thing in certain situations – and that feels SOOO reassuring.

This part is long, but it won’t last forever. You’re doing everything you can with the information available to you, and you’re fighting your child’s corner each day. So pour yourself a hot chocolate and take a deep breath. There will be a conclusion eventually.

What next?

I’m officially the other side of that weird part now. We have the diagnosis. But ultimately we have the same amazing, loving, funny, clever child that we had before.

I don’t know what’s next – I’m sure there will be positives in terms of getting any extra help, and I’m sure there will continue to be hard times too. So wish me luck, as I do you 🙂

If you think your child has autism

The National Autistic Society is the UK’s leading charity for people on the autistic spectrum and their families. They have in depth advice and guidance. They have branches all across the UK to provide support, information and social activities for autistic children, adults and their families. And they also have a directory of services and support for families and an online community. They are an invaluable source of support.

Would you like to share YOUR story?

We’d love to hear from you. This Is Family is all about sharing family stories – especially from families who feel like their voices are not often heard. Every family has a unique story to tell. We’d love to hear yours. Find out how you can feature on our blog and get involved. So that other parents can feel less alone.

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