My daughter "doesn't want autism"

My 12 year old daughter has had a recent diagnosis of ASD and since then she hasn't wanted to talk about it, only that she doesn't want people to know which I think this is because she had some awful bullying experiences last year, a few this school year and she's feeling really isolated from her friendship group after slowly being pushed out. I've been quietly researching what her consultant advised in the report (mostly being able to name/identify emotions, the physical feelings associated with them, PDA and social stories etc) and any attempt I've made to discuss it, no matter how small and infrequent, causes her to shutdown and withdraw.

Her dad and I aren't together but she se's him regularly, when communicating with me his response to the diagnosis has been pretty poor - essentially it's nonsense with an undercurrent of embarrassment/shame. 

I got some resources to be able to name emotions etc and showed them to her, she got very frustrated so I put them away to bring out at a later date when she is ready. 

It came to a bit of a head earlier when I suggested we go through what her school day typically looks like so I could try and identify areas she enjoys compared with what she struggles with. She was initially up for it and a common theme that came up was that she doesn't like sitting at the front in class which felt like a small win to finally be able to get any information out of her. I could tell she was losing interest and asked if she'd like to stop which she did - so I did. 

I bought up the emotions wheel and she wanted to look at it so we were discussing what physical feelings happen with different emotions and she told me she doesn't want to do any of this, she wants things to 'be normal' 'we didn't have things like this before' and all of this makes her sad because she 'doesn't want autism'.

I'm more than happy to wait until she is ready and learn what I can, change where I can but I don't want to ignore it because I don't want her to be ashamed of who she is. I understand that it may feel too much for her and too soon, I just don't know what to do.... please help! 

  • she told me she doesn't want to do any of this, she wants things to 'be normal' 'we didn't have things like this before' and all of this makes her sad because she 'doesn't want autism'.

    I'm going to suggest a different approach here.

    Gen Z kids are raised in an environment where they like to "gamifty" situations - try to find ways to get to the win faster, circumvent the hard slog etc.

    First of all I would check you have a solid understanding of autism and what traits your daughter has then make sure she understands which of the difficulties she has socially are caused by these. Keep it short and to the point as she probably has a low attention span for things that are uncomfortable for her.

    Point out that there are techniques she can conciously use to help her fit in, but that they come at a cost to her emotional energy.

    Teach her how to mask and appear normal. Where she has stims, point these out and suggest ways she can hide these or shape them to be a part of her personality more. The shaping part is probably going to happen more about age 15 when she starts to become more her own person though.

    If she suffers from bright lights or loud sounds, teach her to avoid situations and when she cant, to use ear protection (noise cancelling headphones) or tinted glasses (or sunglasses). Teach her to make these part of her fashion statement.

    Scripting can also be taught - it typically required roleplay to get it working well and she has to be in the right frame of mind to do this..

    Teaching her how to cope with the unexpected is also incredibly helpful. Just getting her to talk through the situation and maybe roleplay something she really struggles with will help her build confidence.

    Just having her back, listening to her issues (when she wants to talk) and being there for her will be a lot, and if she is really struggling then trying to get a therapist for her - sell it as a coach rather than therapist and it will help.

    I'm suggesting these options as a way for her to fit in as best she can until she is willing to become more of her own, unique person, and by the time this happens then the bond between you should be ready for the more challenging tasks ahead.

  • Ok then, let her describe herself as eccentric or quirky.

  • Usually the teacher decides the seating plan so it may be that the OPs daughter has been put there by the teacher. Some of our autistic students dislike being at the front as they feel more "seen" by other students and would prefer to be out of sight of others. If she is being targeted the teacher should deal with that.

  • It's a book available on Libby , if you don't have a library card you can register online. Sorry I wasn't clear lol 

  • The Spectrum Girl's Survival Guide: how to grow up awesome and autistic by Siena Castellon 

    I'm recommending you read this first and then pass on to your daughter if you feel it's right for her. It was written by a 16yo who was diagnosed at 12 so might help you understand where you're daughter is coming from, and help your daughter understand that autism isn't a bad thing. It's endorsed by Dr Temple Grandin. 

  • isnt the bad kids usually at the back causing trouble though? maybe shes at the front to avoid being targeted by the bad at the back?

  • she doesn't like sitting at the front in class

    I would make contact with the school's SENDCO, if you have not already, and support her by asking that she is not placed at the front of classes. This may make her experience of school less challenging for her. I am a teacher and making reasonable adjustments for all of our neurodivergent students is now becoming a routine part of our teaching practice.

    1. Your post made me feel sad. She is possibly trying to make sense of it in her own way, and what she can do to "fit in". What a horrible time. We are so confused at this age. Sounds like you are doing what you can in a very caring way. I hope she finds ways that help her. I wonder if there are any good books for a young female about how to understand autism? X
  • emotions are often a private thing that we dont want to share. a sign of weakness and shame if they are public.

  • I can only speak for myself but the majority of the autistic people I have known and certainly myself tend to be a problem oriented. Talking about how things make you feel without talking about the problem and how you might solve a problem just feels hollow. You’ve already identified a lot of things that make her feel bad. Feeling like she isn’t normal makes her feel bad. Being bullied and un popular makes her feel bad.

    why would she want to talk about a situation that  made her feel bad unless she was working towards trying to fix it? I imagine that’s her attitude. You have to understand recognising emotions in herself and recognising them and others will be two completely different processes for her. Success in the one will not translate into success in the other.

    if you want to talk to her about her feelings you’re probably gonna have to talk to her about her problems. and if you want to talk to her about her problems you’re probably going to have to give her the impression that you’re at least trying to help solve them. So are you ready to address your soon to be teenagers popularity crisis?

    Because if you’re trying to convince her that life would be better if she just learnt to process her feelings of being upset about being isolated and eat them up then I think you’re going to be disappointed.

  • All that 12 year olds want is to fit in with their peers. This is perfectly normal. Give her a few years and she will start to positively engage with the fact that she is autistic. It is just a matter of emotional maturity.

  • I was like this until I was 20 - I ignored the fact I was autistic etc.

    Have you tried showing her examples of well known people (including those she may like) who are autistic?