Day 15 – A mini tutorial

5 things I’d like to share about living with autism…

  1. The first few days after your child is diagnosed are hard… It doesn’t matter how much you were expecting it. I knew. In fact, I’d pushed for this diagnosis… but hearing the words is hard (Or perhaps even harder is seeing them in black and white!). I cried. Partly, relief that it was no longer in my head… and partly grief… that it was no longer in my head. That diagnosis meant I had to – once and for all – let go of all the hopes and dreams I had for my child. And that’s hard because often they are unconscious dreams… Ones you never really knew you had until you had to let them go.
  2. An early diagnosis really, really helps… And not because of the reasons you might think: I am NOT a proponent of ABA (Applied behaviour analysis). I strongly DO NOT believe an autistic child needs (or wants) to be changed. No, the reason I’m so keen on early diagnosis is that it gives the child and the parent time to adjust to a new reality. For us, J was home schooled for 3 years. I’m not saying that is right for every child, but it was right for J. It gave him time to be who he was. To learn and be confident about who he was. And that was important…. You know it’s going OK when this is your school photo!!
  3. Give it time… Autism is not the horrible place people tell you it is. I’ll be truthful, when I actually got the letter confirming J’s diagnosis…. it felt like someone had turned off all the lights in my world. It felt like a dark and scary place and we didn’t know which way to turn; I just knew that turning the lights back on was no longer a possibility. But we did just take our time… and our eyes adjusted… Think of it as being in a dark room… eventually, the natural light from windows and doors illuminates the space. It wasn’t (and will never be) the same…. but we see and experience things that someone who always kept the lights on will never see. And some of those things are amazingly beautiful….
  4. There are many many benefits…. I know, I know…. you don’t get it: How can there possibly be an upside to autism…. this lifelong disability? But there are. Yes, there are things that J can’t do…. but there are things he CAN do which are simply amazing. He can wear clothes based solely on how they feel; Not whether someone else thinks it’s what he should be wearing. He can make friends based on personality without ever even seeing race, religion, financial status or popularity. He can break pretty much any security system about (and certainly every single one designed to contain a 9YO boy!) He can do what he wants because the ‘rule book’ went out of the window years ago! In short, he doesn’t compare himself to others and he doesn’t compare others at all. And believe me… that’s liberating! It’s different… absolutely… but often, that can mean better 🙂
    Here’s J…. Not ACTUALLY touching and therefore not ACTUALLY breaking the rules!!! He knows how to push it to the limit!!!
  5. Trust yourself!! As I said, the rule book no longer applies. You are going to have to figure this out on your own… Yes, it’s harder when there is no manual there to guide you, but (I promise!) it’s also way way more fun! I like to think of life with J as using one of those curly-wurly straws… Harder work to get your drink, but… Oh! Didn’t we all want one of those straws!!

Am I saying that I am pleased my son is autistic? That’s not the question…. It’s not a question I would or could have answered before those lights got switched off!!!  Am I saying I would not change a single thing about my autistic child? Absolutely!!! He is perfect. Just the way he is.

So, to any parent facing a soon-to-be or recent diagnosis…. take it slow… don’t listen to what could go wrong… listen to all the things that could go so amazingly right!!

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