How to tell child about autism

[arinya]

Our 11yr old is likely to be diagnosed soon. At this stage autism hasn’t been mentioned to them by us or anyone else. So far, conversations have been framed as talking to professionals to try to find out why they struggle with certain things ( can be anxious and have some sensory reactions). Child is female, very bright and high achieving, school have no concerns as she does everything she needs to there and appears to have friends etc. So is likely super high masking. Child has said before that they don’t feel different to their friends. Child has never said they feel different to others and generally has lots of the same interests of kids her age, so this may all come as a surprise to her. I am not sure how she will take it. Obviously we don’t want to say she has autism until we know for sure, but she needs to do the ADOS assessment soon so we do need to talk about that. Any advice?

Sorry no useful advice but definitely bring it up with her well in advance of the appointment.

The first thing we were asked at our ADOS was what did she feel about being diagnosed.

It's a very tricky age for an assessment as they strongly want to "fit in" with their peers, but aren't quite mature enough to understand the bigger picture. I would definitely only do it if you feel a diagnosis will help her, i.e if you feel she will need support with school, university or in work.

I can't give any advice because what we did didn't really help (tried reading various books, watching BBC documentary on autism in females, discussing it in a positive way) Your daughter might be more accepting though and may even already suspect she has it maybe.

Thank you. What was your experience?

Definitely don’t focus on the problematic stuff and use it as an explanation, or wait for a meltdown and try and tell her that she’s only feeling that way because autism!

(Friend’s dh basically did this, after leaving all the parent workshops to his dw and caused havoc with their teen)

I know that’s stating the obvious but it actually is important to get your head around the concept of autism before you try having the conversation. When we’re thinking about our dc possibly being autistic it’s framed as the “something wrong”; the explanation for the bad stuff. But it’s much more than that.

Really delve into the positive side if you can - I don’t mean twee super power stuff, but if your dd is autistic, this is her neurological wiring. It likely is a huge part of why she’s good at fitting in, making friends and figuring stuff out. It probably plays a part in the subjects she excels at and in her interests.

And if she is autistic then the apple probably didn’t fall far from the tree so think about that too. Do you have traits, or did you fall in love with someone who did?

It’s hard if you dont have a certain answer yet, so maybe you need to handle this with a mild curiosity at this stage. It’s just a question to answer.

My ds was diagnosed at 3 and young enough not to really notice or question, so I had time to come to terms. It’s much tougher when they’re older and it’s important that you look after yourself in this process because she’ll need a lot of reassurances and support. Do you have RL support? Could you afford (or find) a counsellor to talk with?

Who's driving the assessment and why? Anxious and some sensory isnt much to go off and the why could inform the how and what to tell her. My DD was diagnosed at 10, but she's felt different to her peers for a long time and already had Autistic siblings. She was fully informed, we had a long wait and she kept asking when we'd know and what id she wasn't and hoping for a diagnosis to explain how she felt.

Id probably approach it as this is one of the possible reasons for xyz that we're investigating so we can get you the support you need. There's a few possibilities and we're starting with this because of abc. We might find out you're Autistic but it could be something else. That a diagnosis doesn't change who she is, its to help her understand herself and why she might find certain things hard and so you can get her the support she needs. Sorry very tired, so fairly generic, but this would be the underlying structure on which Id build an explanation specific to her.

We just emphasised that a different type of brain causes different strengths and challenges.

Freaks, Geeks & Asperger syndrome is good. It's written by a boy on the spectrum. About 20 years old now but I'm sure it's still available.

The main issues she has had are sensory (noise) and she has anxious thoughts around upcoming events and she also struggles to move past a negative experience as she assumes it will happen again. These things have now started to affect her day to day life and prevent her doing things she wants or needs to be doing. We have met with a private clinic who said definitely anxious but they were unsure of anything else,and asked us as parents to complete the social responsiveness scale questionnaire . Her score puts her in the severe range so they have now suggested going down the route of full autism assessment.

Just in the same way you would if your child had other health symptoms which may possibly have an underlying cause. So say, I've noticed that you find .... such and such a thing.... easy/difficult whatever, or I've noticed that you are particularly drawn to ... whatever type of behaviour.

Say that knowing about your body and your brain is important because it means that others can be aware of it but most importantly that she can be self aware.
Say that if you notice symptoms which maybe add up to a certain conclusion then it's prudent to see a specialist, just as you would if you felt you were diabetic or had coeliac disease for example. Maybe there are children she knows with dyslexia for instance, and you can explain that they also will have been to see a specialist to tell them about how they experience certain circumstances.

Thanks for all the responses. We discussed earlier today and she was very open to it all.