Gorgeous boy – I hate it when your pain is deep, unfathomable, unreachable.
Today you cried for thirty minutes because there was something wrong with your food. An unexpected shape or colour – you were too distraught to say – but it was wrong and there was no way to fix it.
I hate it when I mention autism to friends and they stay silent, or change the subject quickly – a passing flicker of chill in a warm conversation – though I know it is just because they don’t know what to say.
I hate it when the health professional says “Oh there’s nothing wrong with her though, is there?” when talking about your sister. Though it is meant without malice, still, it is a spike in my throat, stealing my voice, silencing my outrage. I look over, but you are oblivious.
But can I hate autism?
I hate it when you hurt yourselves, and I cannot control my terror, when the dead lead sickness comes and I should be brave to save your fear – but my own is screaming at me.
I hate that my expectations of what you should be sometimes stop me revelling in what you are.
I hate that cancer took my grandmother, that it will take many others yet, people with loves, who love, people whose absences will be felt keenly. I hate it when I wake from a dream about her and know she is gone all over again. I hate the unfairness of that.
I hate bigotry. I hate callousness. I hate grief.
But can I hate autism?
When you are anxious, you press your thumb into the palm of my hand and make circles, over and over again. The pressure, the sensation – they soothe you in busy places. I see your unease grow and I know you will ask “Mummy, can I have your hand?” I feel you relax as you take it.
Is that you, or is that autism?
When you listen to music, your whole body is alive. You never sing the words. You are always the drums, or the bass. The rhythm flows through you and so does your delight. The songs must be exactly as predicted – old friends.
Is that you or is that autism?
When you speak, often you do not sound like a child. Facts and rules and repetitions – you learn phrases and delight in them. Words are like games. Nonsense and muddled phrases make you laugh until you cannot breathe. Your strict idea of what is right heightens your sense of the absurd, I think.
Is that you, or is that autism?
The two are irrevocably intertwined. There is no break between them – like balls of different coloured dough, mixed and kneaded, there is no way to separate them, no way to restore the distinct colours that they were; they are one.
I have seen it written down, that phrase. I have heard someone say it. I hate autism. I know where that thought comes from. When the screaming will not stop, when the trip is called off, when we cannot complete a simple task, when I fear that you will be unhappy, alone – I know that deep frustration, that poisonous rage.
I know that hate could be a name for that.
But I do not hate autism. I could never hate autism. Because I could never hate you.
When you are older, you might see the shadow of fear and frustration in my eyes and think that you caused it. In truth, it is what all parents feel. We fear because there is so much to lose. One day, you might hear the health professional who says there is something wrong with you – and you might believe them. One day, you might think that, given the choice, we would take it away. And so I need you to know –
Life with autism is sometimes harder. But life with you is a gift.
This post was, in part, inspired by ‘Five ways to damage an autistic child without even knowing’ from Chris at Autistic Not Weird. Please check it out.
Awesome post. I think my husband struggles with this same question and my bipolar. Although I am not my illness, the characteristics inherent in my illness are a part of me.
Beautiful article, thank you.
Your eloquence and your love are so beautiful. With tears in my eyes, I thank you. I could no more hate autism than I could hate my kiddo’s red hair. They are both part of the wonderful gift that is him.
I’m with you. I’ve never hated autism; have learnt so much from it and about it, and about myself because of it. Autism is amazing; our children are amazing. You are helping ensure they grow up in a world where other people see that too. Thank you xx
It’s so beautiful, the way you speak of your little boy. How lucky he is to have a mummy with such understanding. 🙂
Really thought-provoking. Autism is just another way of looking at the world. I hope for a world that is better informed; posts like this go some way to doing that. Thank you.
This is wonderfully raw and honest – and the comments are too are so helpful to someone only just realising the size of My gifts! Thank you xx
Lovely post. My daughter is currently being assessed as being on the spectrum and when talking to a family psychologist recently, he actually used the phrase, ‘but all the rest of your children are normal’. God I hated that, what’s normal anyway? x
This post really resonates. When people say things along the lines of “It’s a shame he has autism”, I can’t help but think “Is it, really? Because then, who would he be? He wouldn’t be HIM”.
Great post. You can hate it but you will always love him. Autism is what makes your son as special as he is. X
Thought provoking words. Can you hate autism, I really don’t know as whilst you have all the difficulties that go hand in hand with it, without those your son wouldn’t be the boy you know and love x
This touched me. Thank you x
Thank you.
This is really thought provoking…
Without Autism your boy wouldn’t be the boy you know and love….
You have a very special boy xx
Every word of this. It’s a real love/hate relationship some days. Thanks for putting it down so eloquently. #SpectrumSunday
I shared this post across my social media this week it’s a fantastic post 🙂 Definitely as with my almost 5 year-old ‘a gift.’ X
I love reading your posts so very much as you speak my very thoughts. It can be tough but it is what makes them unique and loveable. Traits that sometimes only we can see the beauty in. Thanks for sharing <3 #SpectrumSunday
I left a huge facebook comment relating to this when I first saw it last week. I loved this post, I think it resonated with a lot of people! #spectrumsunday
As parents we will always hate seeing our children struggling, distressed or in pain. It’s ok to hate those things and as you said – the autism is him – and that’s the whole point of love.
This is so beautiful and moving, thank you x
Thank you for this really honest post, as an autism parent I know how you can feel sometimes. It is easier to hate autism and hide away from it and become overwhelmed by the problems it causes your child. As my son has grown older I have come to terms with it more and sense those things that upset him, which he deals with much better with now he is older. I have also found some really amazing qualities that my son has and things that he does and how he is that are really special and unique in a good way, and that make me so proud of how far he has come. x
I am a 27 year old girl with autism. I just wanted to say that I am sending virtual hugs to you. My mum thinks similar things to you I think. It was interesting to read the bit about the music, as I adore songs with lots of drums and bass- they take me away from things that frighten me into this amazing world in my head. Like a holiday!
I hope that as your boy gets older you can communicate with each other more about these things and maybe understand each other more. I certainly think that has happened for me and my mum.
All the best, isabel
what a lovely article, such a strong bond
Oh Danielle,inly just got around to reading this.It is beautiful and it made me cry.Thank you.
Very nice. Well written.