Thursday, 3 May 2018

What Do You Tell Your Child Before Their Autism Assessment?

I wrote this post nearly two months ago, but didn't feel ready to publish it at the time. I still don't now to be honest, but as it's been a while I'd better get it out there!

So since writing this post, things sped up somewhat. By somewhat I mean a lot - having been told we'd be waiting a year for Girl Child's ASC assessment, we then got a phonecall at the end of January to say our appointment was in March. Actually, as I write this post, we had it this morning.

One thing I struggled with in the run up to the assessment was knowing what to tell Girl Child. At 6 years old I wasn't sure I was ready to tell her she might be autistic, partly because, well, what if they said she wasn't? She sees things so black and white that telling her one thing only to have to backtrack would really upset her. But at the same time, how was I going to explain to her that we were taking her out of school for a few hours to play in a room with a stranger while we were in the next room answering questions?

I turned to Google as any 21st century parent would, but found little guidance. A lot is written about what to tell your child after diagnosis but I couldn't find anything about what to say prior to the assessment. So I asked a couple of bloggers with autistic children what they'd said or done, and here's what they had to say:

"I think it depends on the age of your daughter and level of understanding to be honest. With older children that understand I think its important to be honest with them about what it going on. My 13 year old is currently being assessed and doesn't like the idea of it but needs the help and I have told her and so has the person assessing her, that she might get a diagnosis. My son however was assessed when he was 7/8 and didn't have a clue what was going on at the time so I just told him he had an appointment. After he received a diagnosis I explained it to him at his level of understanding." - Autism Kids On Tour

"I told my son that we were going to see a lady who just wanted to chat with him for a little bit. I said there would be toys and things to play with so it wouldn't be too boring. To be honest, he doesn't really understand anything complex so this was enough for him. I told him the morning we were going as he can't cope with transitions and when he knows something is coming up soon then his anxiety goes through the roof." - Living With A Jude

I got advice from other parents privately too, and in the end decided to keep it simple. We considered waiting until the day to tell her but, as it was an early appointment which meant her morning routine would have to change to allow us to leave sooner, we decided to tell her the night before. At first I just told her that she had an appointment in the morning so wouldn't be going straight to school but we'd get her to school as soon as possible afterwards so she didn't miss too much. When she asked what the appointment was for I told her it would be a bit like when we went to see the lady with lots of toys who talked to her a bit about school last summer. (That was one of our CAMHS appointments prior to being referred for assessment.) She was a bit worried when I told her it would be different people because she doesn't like new people but didn't ask any more questions, which surprised me. Normally she won't stop asking questions! On the way to the appointment we told her we'd be in a different room answering some 'boring questions' and this didn't seem to bother her too much.

So if you're reading this wondering what to tell your child, my advice would be not to overthink it. You know your child best and you know how much information they need or would find helpful right now. If they're older it might be appropriate to explain what the assessment is for, but for younger ones sticking to the what rather than the why might be best. They may surprise you by not actually asking that many questions - if you've got this far they're probably used to going to random appointments by now!

Oh, and if you are reading this in preparation for your child's ASC assessment, I send you love and strength. It's scary, I know. But you've got this far, you can do this next step. Deep breaths, it's going to be OK.

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