Published on 12, July, 2020
Hi all, brand new here and really trying to find my feet. We have an 11 year old daughter who had an ASD assessment a couple of months back and we feel now is the time to tell her. She starts secondary school in a few weeks, the private clinic that did the assessment has let us down a bit to be honest as we were hoping for their support in telling her at the start of the summer holidays but they have been totally out of touch with us. Just hoping for some advice or reassurance or anything really in avoid place to start even with explaining things to her. I’m very much of the opinion that it should be all looked at positively. My worry is she will shut down, not talk, stop us talking about it then keep it all in. I’d love to find a way of speaking to her where she doesn’t feel that way about it, but also if she does, a way to keep dealing with everything and not make it a negative thing. Any help hugely appreciated. Thank you all!
Hello and a warm welcome to our Community.
The below National Autistic Society article includes information (plus some tips from Parents of Autistic children) about how to prepare for helping children to learn about their Autism Diagnosis.
Within the link area towards the bottom of that webpage there is also a section called "Article Sources" and if you scroll down through the list of research articles you will see a grouping of several ones about Parents / Children / Teenagers.
https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/after-diagnosis/talking-about-and-disclosing-your-autism-diagnosis
If reading lots of things starts to feel like a homework overload; you might be glad of watching a couple of the National Autistic Society YouTube videos:
There is also an Australian animated video "Fast Facts About Autism For Kids"(which might be pitched at about the right age group for your Daughter and is narrated by children) which explores some of the potential concerns that she might think about (perhaps if you were to watch it a few times first, then watch it together with your child and discuss it a bit with her, and maybe reassure her that you can watch it again together when she has had a chance to think about things for for a few days - as there is quite a lot of information to which both you and your child are being introduced:
https://m.youtube.com/watch?v=dUbsyd8Fnyw
Perhaps there might be a support group for Parents / Families with Autistic Children in your area - your nearest National Autistic Society Branch might be of interest too (here is the search page):
https://www.autism.org.uk/what-we-do/branches
There are also some suggested books which approach topics particularly relevant to Autism in Girls and Women (your local Library Service might stock some of these titles):
https://www.autism.org.uk/advice-and-guidance/what-is-autism/autistic-women-and-girls
It might help your Child to know there are other Girls, Teenagers and Women who live their lives well. Recognition of that Community might be aided via awareness of The Autistic Girls Network (thinking of starting at a new School, you might find some of the items on their Download section helpful):
https://autisticgirlsnetwork.org/
If you become concerned about your Daughter potentially becoming shutdown and not talking with you about worries and feelings - it might be worth considering that it is possible she may not actually find it quite as easy as some other Children to recognise the range of emotions at that point and the range of names to choose to describe those feelings and sensations.
Having some visual prompt strategies available may assist her in such a situation. She might feel able to point out to you / select an image with which she identifies at the time (even if she were not in a position to have a conversation about it with you at that moment).
Such visual strategies do not necessarily need to be items purchased - it might be a comfort to her to use e.g. the illustrations in a book with which she is already familiar, or examples of family photos of people and places (examples of other experiences which were new to her at the time but turned out well, people she knows looking happy / sad / tired).
If your Child enjoys art and drawing you could even try drawing together things associated with the topic and potential emotions (either a separate drawing each and compare together afterwards, or take it in turns adding a bit of the picture taking it turns to build the story together.
E.g. what do you know, do, and feel about the journey to get to the new school / what new experiences might be included at the new school / things we already understand and exploring the new things we don't yet know much about / people, places and sensory input to be enjoyed versus the situations we find scary or overwhelming and way we could do about that situation.
It might be worth considering that lots of Autistic people (of all ages) really like to know much more information, in advance, about: new people (names, roles, what they look like), venues, building layouts, facilities you will see there, where you can ask for help, where to find a quieter place if needed, and the schedule of events (now and next).
Sometimes this is known as a Social Story. Perhaps you and your Child could make one of your own together about the new School?
There might be a good website and Newsletters for the new School, or they might have featured in an article on the website of a local newspaper, or you could take some photos of the travel routine and the building.
In this way, your Child can learn to recognise the information and the part they will take in the new routine and ask you anything they are not confident about before School starts
Here is an example (by Autism Little Learners) of the sort of information which might allay any concerns:
https://drive.google.com/file/d/14KVaBB6Ea7KniH7yjaIYUt_y8kFsdFiB/view
This step-by-step video introduces Social Stories in more detail:
https://m.youtube.com/watch?v=JMPV-8ojHvk
Learning about Autism, your Child's identity as an Autistic Girl / Teenager / Woman, what reasonable adjustments might enable her to thrive and find her place in society is a journey you can explore together (with support from other people along the way).
You did not mention contact or support via her new School (your Daughter is unlikely to be the first Autistic child they have welcomed to their School). I would hope you will be able to establish a rapport / partnership relationship with her new School to add them as another source of knowledge and support for your Family.
One aspect of our Community Forum which might not be immediately obvious to a new member is that you can see historic posts grouped by category e.g. Parents and Carers.
You may also benefit from engaging with the Autism Central programme:
https://www.autism.org.uk/advice-and-guidance/autism-central
I think there may be a problem with the link within the above page so this may be easier access:
https://www.autismcentral.org.uk/about-us#:~:text=Autism%20Central%20is%20a%20peer,for%20autistic%20people%20they%20support.