As a parent of a child with autism I feel like I’ve gone through two big milestones. The first was the point that we got told that yes, those quirks, strange behaviours and unique things he was doing were indeed autism. And the second was the moment that we had to tell him about it. For us there was a cavernous four whole years between those two things - his diagnosis at 3 years old, and the day, just a few weeks ago, when he was 7 when we sat him down and told him he was autistic. That’s a long time to know something so major about your child and him be none the wiser. It’s also a hellova long time to build up to ‘the autism chat’ with him.
Photo byKitty Gale
Our son has high function autism, which means he’s in mainstream school but with one to one support and can, I suppose, as the label suggests, ‘function’ in the world, all be it with some challenges. Maybe if he were more severely autistic we wouldn’t have needed to tell him about his autism because it wouldn’t really have made much difference to him. But for us, we wanted him to know and became almost desperate to get his autism out in the open. It had become a word that we whispered in conversations and now he could read we were having to hide the autism books we’d bought and the letters back from school that mentioned it and the documentaries we’d saved on Netflix about it and clear our search history for fear he’d see it.
Autism had become like a dirty secret in our life when in actual fact it was anything but.
I pride myself on being really open with people about his autism as I’m on a bit of a quest to help normalise neurodiversity and push it in a positive way, yet here I was mouthing it to friends when he was in earshot and doing weird eyebrow morse code movements when trying to communicate with his teacher on the subject. We’d been advised by various SEN professionals that the timing for telling him was key. If he was too young he wouldn’t understand and might become extra anxious about it. We were also warned he might then use his autism diagnosis against us like some kind of super-excuse: “It wasn’t me, Mum. It was my autism that made me do it. Soz.”
So we waited. And waited. And waited. Until he was 7 years old. Not because we felt he was mature enough to ‘get it’. More because we just couldn’t hold the bloody topic in any longer. We needed to explain to him why he had so many extra doctors appointments compared to his friends. Why he had to have someone sitting with him in class helping him. Why he had to go off and have special lessons on how to socialise. Why he was freaking out so much because a bee just flew past. Why he hated us asking him to do anything. Why he got so very angry and upset and frustrated simply because we’d asked him to pass the remote control. Why he felt the need to squash his sister’s face a thousand times a day. Why he never got tired. And why we always were. It was time because we felt we owed it to him to be able to explain why he was in such a spin half the time.
So we started to research ways to tell him and found there was very little resource out there for parents. There are books that help you build up to it and we took the advice of a child psychologist on what kind of things we should say, but in terms of putting his autism in to words that he’d understand we were floundering.
We also had a very real fear that we’d say the wrong thing, Maybe we’d start to tell him and end up waffling about his autism in such a way that we went widely off subject (not great for kids, let alone kids with autism) or we’d be too vague (again, not great, he needs facts and solid reasoning.) We were also completely terrified that we’d cry. Which was mortifying. We didn’t want his autism to seem like such a bad thing that the very mention of it made his parents weep. Because his autism isn’t a sad thing for us. It’s often overwhelming and we worry about the future and we feel sad that he finds some things so goddamn hard, but starting off his autism journey with a sad, blubbering-mess of a conversation would’ve felt totally wrong. We wanted to empower him about it, not plunge him in to therapy.
So we decided to tackle “the chat” like we would tackle our work. My husband and I are in advertising so we created a presentation for him like he was a client and we were going to sell him the big idea that he had autism and make him buy it like it was a good thing to have in his life. So we took the dry literature the psychologist gave us and simplified it, added in pictures of things he loves – he’s mad-keen on Star Wars and we knew he’d be drawn to the presentation if he saw it in there. We pointed out his strengths, stuff that his autism helps with and also added in the things he might find trickier because of his autism. We also added photos of us and his sister so it felt like it was all about him and not about anyone else, really important for him as he’s quite literal.
Photo by Kitty Gale
Then we scheduled a session to go through it with him and the psychologist there to back as up. The day arrived and we were incredibly nervous. I was excited to get it done and see how he took it. Yet apprehensive that it wouldn’t go to plan or he’d hate us for not telling him sooner. I was also prepared for him to say he already knew and why had we gone to the trouble of doing a whole silly presentation when we could’ve just asked him about it. Duh.
As we sat down to go through the printed out presentation document I was grateful that he chose to climb on my knee and listen from this vantage point. I didn’t want my face to give away my nerves. The presentation went well. He listened as his Dad talked through each page and he even asked a few questions along the way: “When did I catch this autism then?” “Does Frankie (his cousin) have it too?” (There was a bit of a heartbreaking moment when he realised he didn’t and that they weren’t the same in his eyes anymore.) Everything ticked along smoothly until the very last page of the presentation. When we reached it both my husband and I looked at each other - we’d choked on the very last hurdle. Neither of us could read out the words. So our son took over and read it out. Which, looking back, was exactly how it should’ve gone of course. On that final page was a picture of us holding him, beaming with pride. He read the words out slowly and then smiled:
“The most important thing is we love you because you’re you and our love will never stop.”
That’s when we knew whatever happened, we’d be okay. Because if the only thing he took away from that day was this, then that was actually the only thing he needed to know.
Charlotte Adorjan is a Freelance Writer and Creative Director. She also helps to run Woodism, an art collaboration, selling prints and cards written by her autistic son and designed by his Dad. Profits go to Ambitious About Autism the national charity for children with Autism.