Monday 27 February 2017

How to tell your child they have autism

Over a year ago, I posted some top tips for how to tell a child they have autism. It was possibly a bit rich of me, considering I hadn't yet told our girl she was autistic, but I'd done some research and wanted to keep it in mind for when the moment arose.

Well, I finally decided the time had come.
Rainbow brain black head text different not less

I picked a good time, I remembered one of Temple Grandin's favourite phrases (Different, not less), I took a deep breath, and I planted the seeds.

Before I tell more, I'll come clean. I had to bribe Sasha to have a 'chit-chat' with me (her words for if we ever have a talk, though it's usually when she's in the bath and she wants to tell me something long and complicated about Skylanders or Minecraft). The reward for our five minute conversation was to be fries from that famous chip shop - a guaranteed way of making sure she is in a good mood.

Sasha has been struggling to explain her upsets of late, and has frequently said that she can't find the right words to tell me. That, coupled with the fact that we are about to start some serious discussions about what happens next in terms of schooling, and a couple of articles I've read about why it is better for children to know about their autism, was the nudge I needed to try and start this conversation.

We've never tried to hide the word autism at home; our eldest knows and understands all about Sasha and her particular type of autism (Pathological Demand Avoidance). Due to Sasha being diagnosed young (she was just 2 and a half), and subsequently being signed off by the paediatrician and most other services, we've never really had to go into meetings or appointments with her where autism was discussed. Last year when she was in hospital I did have to inform medical staff of her diagnosis, but most of the talk was carried out away from Sasha's bedside in order to try and keep her anxiety levels low.

A couple of months ago, Sasha mentioned to me about how a boy at school who she likes, and who shares her cooking sessions, was out of his classroom like she was, getting extra help. She didn't mention anything about the way he looked, interestingly. I wondered if this might be the chance I needed to start a slightly deeper conversation and so I asked her if anyone had mentioned the words 'Down's Syndrome' to her. She said 'no', so I started to try and explain, only to be met with 'oh, do I have that then?'. At that point I took a deep breath and asked if anyone had ever mentioned the word autism to her... and she shoo-ed me away, grabbing the iPad, attention totally gone and not wanting to chat any more. Not because she didn't want to hear about autism specifically, but it was clear her mind had wandered and she wanted to watch something more fun on YouTube.

I left the room, and wondered if another opportunity would present itself. To be honest, over the next two months it didn't, so I decided to create that moment myself. As Sasha gets older (she's 10 this year), it feels like she is doing more thinking generally and I was worried that she may internalise any worries about being different, and not being part of friendship groups. The girls in her class are all totally lovely with her; they accept her for who she is because they've been with her since the age of 3 or 4. But they have all moved on, and grown up; they are at the stage when they want to have girlie chats about make-up and music and go shopping together or hang out and watch movies - all things which Sasha would find difficult.

So I went to sit with Sasha, armed with our copy of the fabulous book created by Chris from Autistic Not Weird, which has a photo of Sasha on the front and inside. I had her attention (because of the fries, I'm not daft) and asked her again if she had heard of the word autism. No, she replied. So I asked if she had noticed that she found things a bit more difficult than some of the other children in her class. She thought about it for a second, and then suggested that she was more stressed more of the time than the other children. That felt like a key moment; in some small way she is understanding her struggles.

We talked a bit more, about how she has extra help from classroom assistants, and how she doesn't do homework (because it gets her too stressed), but it was fairly clear that she hasn't actually given it much thought before now. I didn't labour the point; instead I referred back to the everyone is different idea, and then I brought out the book to show her. At first, she didn't spot herself on the cover, but when I told her the rough area to look, she found her picture, but it made her want to hide her face - 'mum, you know I don't like the popularity!'. Then when she realised there was an even bigger, full page photo of her inside, she didn't want to look at it, again seemingly embarrassed by the spotlight.

What we love most about life book Autistic Not Weird

So I moved on fairly quickly (it was time to get the fries; after all, we had been talking for all of about, ooh, six minutes maybe) and I left the book at the edge of the sofa. I'm guessing it won't be looked at again for a little while, but maybe one day before too long, her curiosity will kick in and she'll want to know a little more about people like her. Her Tribe. Different, not less.

(and as a little footnote, Temple Grandin has actually been given a copy of this book)

For more information about PDA, please read the book shown below: 
* this is an affiliate link and I may receive a small commission if you click and go on to buy anything. It won't cost you any extra.
Book cover for Understanding pathological demand avoidance syndrome in children, by Phil christie, margaret duncan, zara healy and ruth fidler
(Other PDA books can be found in my 

To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?

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