To the parent of a newly diagnosed autistic child…

To the new autism mum who just wants someone to tell her that it will be okay

I think you know by now – no one can tell you what the future holds. No one can tell you that this path will be easy, that it will not be fraught with heartache and frustration. No one can tell you that this will all go away, that the child you love so fiercely will be just like other boys and girls.

I cannot tell you that.

But I can promise this –

One day, you will wake up, and that cold dead weight in the pit of your stomach will feel a little lighter. You will barely notice, hardly perceive the change that happens oh so slowly. But, one day, the texture of your reality will feel comfortable again. You will no longer feel like you are in a bad dream that you need to escape from, if you could only wake up. One day, there will be a new normal and you will know that you will be okay even when some things are not.

I know, right now, that future does not seem possible. You might be desperate for immediate relief – for someone to tell you that there has been a mistake, for tales of other children who lived ‘normal’ lives, who achieved amazing things. You may scour the internet for every scrap of information, for every sign that your darkest fears are unfounded. Be careful. Madness lies that way. For every story that brings you comfort, a dozen more will paralyse you with dread.

But they are not your story. They are not your child’s story.

Biggest excited by his windmill

There will be dark days. There will be times when the sick terror returns and you could scream with frustration. Sometimes, the fight will exhaust you – the fight to make it through the day, the fight to stay calm, the fight to be your child’s champion when no one else seems to care. You will feel so tired that you will wish there was a choice, a way to stop, a way to curl up in a ball and give in to despair. These things are almost certain.

But certainty is a scarce commodity. Your worst fears are a physical presence, concrete, weighing you down, restricting your airways. Hopes and dreams seem light and flimsy – as inconsequential as the air. You cannot grasp them long enough to trust that they are real, to imagine they could come true.

But some things are true.

You are strong enough. You will adapt, become a better person. Love, safety and happiness – they can be enough. Most days, they will be enough. When your child achieves something, you will be delirious with joy. When they do something you once thought was impossible, you will dance, giddy, around your kitchen. When you can penetrate their world, when you share the wonder of their unique perspective, when they make connections with you, and others – you will know that there is peace and goodness in the world once again.

Right now, you feel raw, bruised – your wish to take it away is all you can focus on. Or, you cling to a future you could bear, a future filled with those flimsy hopes, and you cannot escape idea that it is the only future that you want, that it is the only future that will not be a tragedy. That will not change quickly. This grief – it is too powerful to melt away.

But terror will retreat. That concrete spectre of dread will lose its power to haunt you so relentlessly. Hopes and dreams will evolve. Joy will become tangible again.

I cannot tell you that it will be okay but I can promise you that okay will change.

And that will be okay.

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17 thoughts on “To the parent of a newly diagnosed autistic child…

  1. So well put, I always feel so bad for those who have a newly diagnosed child. I want to tell them it will be okay, but it never really is, it never goes away, but you do learn to adapt and being okay is however you perceive okay to be. Lovely post, all new autism mum’s should read this xx

    1. Thanks so much for such a lovely comment. Yes, that is just what I wanted to get across – that is is ok even though it is not ok too! Thanks again. xxx

  2. Oh my goodness, my 9 year old daughter was just diagnosed yesterday and this article popped up in my feed today! Thank you for such an understanding and insightful article. I feel like I’m not so alone, that other people have gone through what we are going through right now and felt the same, and it is ok to feel like this. Thank you!

  3. From a mum with an autistic son who is now 13, we have been through ups and downs and told many times he will not be able to do some things and has often proved us wrong. All children, including those with an ASD, are individuals and will have their strengths as well as things they find challenging. The autism is always there and I am sure I will always worry about his future, but we have also had some great days when I am so proud. Hold onto those little things and steps forward which may seem tiny but are huge for your child. The most important thing to remember is that you are not alone, there are many mums and dads out there who have been through the same thing, from diagnosis to the journey through life and we are all rooting for you and understand how you feel.

  4. Somehow “okay” takes on a new meaning. Sometimes I feel lonely, but I know that I am not alone – there are so many others feeling just the same. #spectrum_sunday

  5. I was so very lucky not to go through this. I realised my eldest is autistic because my sister is and had just had her diagnosis. So, I had support from my family immediately and never really had that lost feeling.

    I have been so overwhelmed by the support other parents online can provide, though, and I think this post is a great example of that.


  6. #SpectrumSunday such a touching post, for my local parents support group I like to choose a blog of the week as there are parents who are at the start of their journey, this will be fantastic to share, thanks for sharing your wonderful knowledge yet again 🙂

  7. Such a lovely post. Now my son is going into his final year at Uni I can really look back and reflect on all this. He wasn’t diagnosed until he was 10 and his life was SO different back then and we feared he would never live any kind of normal life. #SpectrumSunday

  8. It’s amazing what a good day can be measured by and different people have different experiences. As Joseph has become older our lives have certainly changed and we’re great at celebrating small wins #SpectrumSunday

  9. I came here looking for any tips on chewing/sucking clothes and stumbled across this post. Thank you for writing this, your words are comforting to a Mama who is in a state of limbo right now (closing stages of diagnosis with an agonising wait to just get told what you already know!).

  10. I realise this is an old post but I wanted to let you know how much reassurance I have gained in reading this. My son has just been diagnosed with Autism and he is only 19 months. I have been searching the internet trying to understand if his early diagnosis means something more dreadful for him. But you are right – “madness lies that way”!! Yes indeed the stories and blogs I have read are not mine and my son’s future. Ours is yet to be told. I have taken great comfort in reading this particular post but also everything you have written about your sweet little boy and the story of your life with Autism.

  11. Having someone tell me it was going to be ok early on, and spent the time to explain that to me, would have made a world of difference early on. Three years on, we are in a much different space to where we were when my son was first diagnosed.

  12. I remember that feeling immediately after diagnosis, its like looking at a stranger in a way as it feels like starting over with a brand new set of rules and expectations!
    I think for us the hardest part was and still is, trying to not worry about other peoples opinions and reactions to our pda boy while we do what is needed for our new normal

  13. You know, it will be ok! I was once that mum of two newly diagnosed children. I have good days, fantastic days and days of sheer frustration and sometimes a little bit if sadness. My advice to you is to just go with it. Don’t fight against who your child is. Each day, each week, each month and each year that passes….it will get easier and it’ll be OK ❤️❤️❤️

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