My son has autism; hear me weep/roar depending on the day

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Someone wise once said, write from the scars, not the wounds. The theory goes that the wounds are too raw, too much, and people will turn away. And all year I’ve been waiting until I’m okay enough, until I have a grip on it enough, until I have some kind of ‘great wisdom in hindsight’ to write or talk about it. But I just don’t yet. So here I am, ignoring good advice and writing from the wounds. Turn away now if it’s too much.

Early this year, our son was diagnosed as ASD (that is, he’s on the autism spectrum). Truly, this knocked me sideways for months. I cried and lay awake at night for months. Tears lay just below the surface, ready to spring like a leaky hose, for months.

But I have felt like I’m not supposed to say any of that.

I feel like what people want to hear me say is: “oh, that’s okay, he’s still him; nothing’s changed; it’s just a spectrum that we’re all on; he’ll be fine; he’ll find his own way in the world; gosh, it’s not like it’s cancer or anything!; plenty of ASD geniuses in the world; in fact, he’ll probably find a cure for cancer, ha ha!; hey, it’s practically trendy these days!; everyone’s got issues; everyone is different.’

But despite all the logical understanding I have, this is what I felt: SHOCK. Deep, deep, shock. (Even though, ironically, I’d suspected it from not long after birth.) This shock was followed by FEAR–paralysing, gripping fear for his happiness, his future, and his ability to “be normal” (which is completely counter-intuitive because statistically speaking he isn’t by definition normal; he’s exceptional.) Will he ever have friends? What if he’s picked on and bullied? What if he can’t go to school? We’d already had to pull him from daycare because his sensitivities meant he wasn’t coping. It wasn’t too far a leap to realise that kindergarten/prep/year 1 might not go well either.

Again, none of this worry is logically helpful. Just take one day at a time and all that.

But when someone tells you that your child is different and will struggle in the mainstream world, then every primal, mother lion instinct you have will well and truly rise above any kind of logic and roar the the flaming house down.

I have tried to talk. And these are some of the things others said to me:

  • I don’t believe there’s anything wrong with him.
  • He’s four years old; he should be able to go to the toilet properly/get dressed/feed himself by now.
  • Are you still going to continue to vaccinate? 
  • Oh, that, yes my child does that [behaviour] too.
  • All men are like that aren’t they?!
  • I don’t believe autism is real. 
  • Have you taken him off gluten? 
  • Do you worry it’s something you did while you were pregnant?

At times, when I’ve tried to talk to others, I’ve had them change the subject, shift uncomfortably in their seat, look away. I’m not sure if they’re turning away from the topic of autism, or they’re turning away from me, my pain, my tears, my fear. Or maybe it’s their own.

Do you know what I’ve felt most this year? ALONE.

Dreadfully, painfully, frighteningly alone.

Other people’s denial of the diagnosis has shocked me to the core, carved deep wounds and made me afraid to reach out further. I’ve also been afraid to reveal my son’s diagnosis because he’s a person and maybe he wouldn’t want this information to go out to the world?

But then Hubby and I talked about it and decided that hiding and keeping quiet was akin to shame.

There is nothing wrong with our son. But he is different and he does need help and he is, by government definition, disabled. (And you know how much the government would like to get out of handing over monetary assistance for therapies, so perhaps this whole autism thing is real, yeah?) None of this is something to be ashamed of; it just is what it is. But so often in life, anyone who is different in any way is pushed into the shadows. Difference makes us uncomfortable.

Flynn’s paediatrician, who did his final diagnosis, said emphatically: “Let me very clear–there is nothing wrong with your child. He just happens to fall into a very small percentage of people whose brains are wired differently. The problem, though, is that we put them in a situation (such as school) where the majority rules and expects them to just get over it and cope.”

Our early psychologist, who did most of Flynn’s testing, has three children on the spectrum herself and has raised them to be loud and proud about it; to see it as a marvellous stroke of luck that they are truly gifted; to talk openly about it to others and really own it deep inside. Her children can’t even imagine being neurotypical let alone want to be anything other than autistic, so strongly has she instilled in them a sense of pride in who they are.

That’s the kind of mum I want to be for my son. Until then, I’ll just keep taking it a day at a time, loving him to pieces, laughing at his jokes, marvelling at his mind, and gently quietening the fears as they loom, and encouraging hope and pride instead.

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12 thoughts on “My son has autism; hear me weep/roar depending on the day

  1. As I read your words, so many thoughts came to mind that I couldn’t begin to articulate them in a blog comment. The most powerful sentence (for me) is the one in which you write how painfully alone you’ve felt this year.
    We all try to protect ourselves from being rejected by those who can’t cope with our pain, and it leaves us feeling terribly lonely, as if we’re the only ones facing what we must face.
    This might be labelled writing from the ‘wound’, but I think it’s just writing from the ‘heart’, putting into words what so many people are feeling. Your words will connect with others who face the same diagnosis in their child, and with still more who feel similarly alone in facing different battles.
    You’ve written a bridge for connection and I’m glad you have. Please know you’re not alone. There are many out there who will read this and immediately think, ‘Thank God it’s not just me.’

  2. Hi Josephine,
    I’m really sorry that some people around you haven’t known what to say about your son, or have said odd things. It’s awful that your pain should have to be magnified by feeling alone with it.
    Your honesty about the comments that aren’t helpful will make sure the rest of us don’t repeat those mistakes, so thank you so much.
    All the best with your fascinating, joke-telling, beloved son.
    Fiona

  3. Oh Jo I’m with you! I felt exactly the same way…people do say those things…..and I too Thank God that it’s just not me! A very honest Post to share with us all! Sending Hugs to you…..Dzintra xo.

  4. Hello Jo, just getting to my computer after days away. I feel for you sooooooo much and my heart aches to hear of your lonliness. People have good intentions most times, but I’m thinking you just mainly need them to listen and be there for you when you get down in a hole. I’m sending positive vibes your way right now.
    Shirley xox

  5. I could not have summarized the way I am feeling any better than this. Just reading this today helped me collect my thoughts and realize I’m not alone so I can move on with my day. Thank you!

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